Caregivers and Stress

[girl_dee]

i have thrown myself in the position of caring for my aging mother, again. i went to a stress management seminar for the caregiver yesterday and it was quite enlightening. i'm still processing all of it.

Anyone else in the caregiver role? A parent, partner, child?

[Teddybear]

i have thrown myself in the position of caring for my aging mother, again. i went to a stress management seminar for the caregiver yesterday and it was quite enlightening. i'm still processing all of it.

Anyone else in the caregiver role? A parent, partner, child?



I have done it before and I KNOW I will have to do it again one day. It is extremely stressful please make sure that you have a support system so that you can get some me time away

[girl_dee]

I have done it before and I KNOW I will have to do it again one day. It is extremely stressful please make sure that you have a support system so that you can get some me time away

My mother is no longer critically ill, she is still fragile but not on deaths door. She weighs 89 pounds.

She is demanding to say the least.

[Okiebug61]

Red's mom lived with us for 7yrs. It was always stressful and it took a great toll on Red. Her mother had dementia and as it got worse it became undeniable that it was time to let go. Having to put her mother in a nursing home was not easy but it actually extended her life. As the counselor explained, once a person reaches a point where they know no one around them it is time to let go. The facility we chose for her to live in took her without any expectations and that was the answer. Red could no longer deal with watching her mother fade. Red needed to let go for her own sanity. The people where Red's mom lived knew her how she was not how she use to be. That is the hard part of letting go, you think your care and love will bring them back, the truth is it won't. It becomes a guilt trip for a lot of people.

Dee I don't know your exact situation but I will send positive thoughts your way. It's not easy and I commend you for deciding to take this on. Your mother has a great daughter and I hope you know that about yourself.

Peace!

[Teddybear]

My mother is no longer critically ill, she is still fragile but not on deaths door. She weighs 89 pounds.

She is demanding to say the least.

I have cared for 2 partners who have passed and I got all wrapped up in caring for them that once they were gone I was lost. I felt I didnt have a purpose anymore. I wish I had more of a support system to help me get out and have me time. I have learned the hard way and I hope you dont.

Its feels like you dont doing all you can to take a few hrs a week just to be U. you will need it take it and DONT let anyone keep u from it

[girl_dee]

Red's mom lived with us for 7yrs. It was always stressful and it took a great toll on Red. Her mother had dementia and as it got worse it became undeniable that it was time to let go. Having to put her mother in a nursing home was not easy but it actually extended her life. As the counselor explained, once a person reaches a point where they know no one around them it is time to let go. The facility we chose for her to live in took her without any expectations and that was the answer. Red could no longer deal with watching her mother fade. Red needed to let go for her own sanity. The people where Red's mom lived knew her how she was not how she use to be. That is the hard part of letting go, you think your care and love will bring them back, the truth is it won't. It becomes a guilt trip for a lot of people.

Dee I don't know your exact situation but I will send positive thoughts your way. It's not easy and I commend you for deciding to take this on. Your mother has a great daughter and I hope you know that about yourself.

Peace!

Thank you :)

((((( Red )))))) for Red, it must have been hard.

My mother and i calcified this role reversal in my twenties. Nothing that has happened over the years was without my consent.

So much of what is happening now brings up old stuff.

She is extremely CLINGY. When i don't invite her to do things, she becomes snarkly at me.

People say not to take it personally, how can i not? It stings!

[girl_dee]

I have cared for 2 partners who have passed and I got all wrapped up in caring for them that once they were gone I was lost. I felt I didnt have a purpose anymore. I wish I had more of a support system to help me get out and have me time. I have learned the hard way and I hope you dont.

Its feels like you dont doing all you can to take a few hrs a week just to be U. you will need it take it and DONT let anyone keep u from it

Do you think for some it's a calling? Like some folks always seem to end up in a caregiving role.

In my group yesterday there was a lady there who was widowed, then her boyfriend who she was also caring for didn't want her there anymore. She was so lost. She said the same as you , she felt she has no purpose. Why do we feel we have to be caring for someone to have a purpose????

i was not asked to do this, i chose it.

i moved back to New Orleans, bought a house with an apartment/cottage in the back to put her in, because she wanted to be closer to her kin, only she has complained about just about everyhting and not found any happiness.

She wants to be IN my house. i want to live alone, and for the most part she is in here anyway, i don't want her here when i wake up and go to bed! There is no reason for her to be.

i was dillusional when i thought she would be happy in her little home. She clearly is not, and reminds me daily that she wants to be IN my house.

Bottom line is that there is old stuff.. that i will never be enough and she will always be miserable.

[TruTexan]

I live 15 mins from my mom and have for the past several years. I take care of things she needs to have done, take her to regular doctor appts out of town to see her heart specialist and her vascular specialist. I help fix the house when it needs something , work on her car or van, etc. etc. My mom needs me around, so I am here. We lost my stepfather in 2010 so I remained close by. I would much rather be living in Austin, but mom needs me, so I'm here. My younger sister lives in TN and helps with what she can like online banking for her, helps pay mom's bills, and sends money or whatever should I need something for the house I cannot afford to get or if mom needs anything. My older sister stopped helping period. She's a bitch and when mom goes, I"m gonna blow my ever loving mind at her about it. I was asked by my younger sibling if I would stay to help mom and I promised her and my mom I would. Hence, I"m single and cannot take on the responsibility of looking to date anyone let alone a relationship. I have already enough on my plate with my own issues and making sure mom is alright. She's the only mom I have to do what I have to do for her.

Dee, I pray your time with your mom will be good times with her and that you don't become overly stressed. I know my own mom can be very demanding among other things.

[girl_dee]

I live 15 mins from my mom and have for the past several years. I take care of things she needs to have done, take her to regular doctor appts out of town to see her heart specialist and her vascular specialist. I help fix the house when it needs something , work on her car or van, etc. etc. My mom needs me around, so I am here. We lost my stepfather in 2010 so I remained close by. I would much rather be living in Austin, but mom needs me, so I'm here. My younger sister lives in TN and helps with what she can like online banking for her, helps pay mom's bills, and sends money or whatever should I need something for the house I cannot afford to get or if mom needs anything. My older sister stopped helping period. She's a bitch and when mom goes, I"m gonna blow my ever loving mind at her about it. I was asked by my younger sibling if I would stay to help mom and I promised her and my mom I would. Hence, I"m single and cannot take on the responsibility of looking to date anyone let alone a relationship. I have already enough on my plate with my own issues and making sure mom is alright. She's the only mom I have to do what I have to do for her.

Dee, I pray your time with your mom will be good times with her and that you don't become overly stressed. I know my own mom can be very demanding among other things.


i have decided that i can't worry about what others won't do. My brother checked out LONG ago. i have to do what i need to do for me and let the rest go.

Some ask me how i can be so good to my mom with the upbringing that i had. i have my crosses to bear, she has hers.

[TruTexan]

Do you think for some it's a calling? Like some folks always seem to end up in a caregiving role.

In my group yesterday there was a lady there who was widowed, then her boyfriend who she was also caring for didn't want her there anymore. She was so lost. She said the same as you , she felt she has no purpose. Why do we feel we have to be caring for someone to have a purpose????

i was not asked to do this, i chose it.

i moved back to New Orleans, bought a house with an apartment/cottage in the back to put her in, because she wanted to be closer to her kin, only she has complained about just about everyhting and not found any happiness.

She wants to be IN my house. i want to live alone, and for the most part she is in here anyway, i don't want her here when i wake up and go to bed! There is no reason for her to be.

i was dillusional when i thought she would be happy in her little home. She clearly is not, and reminds me daily that she wants to be IN my house.

Bottom line is that there is old stuff.. that i will never be enough and she will always be miserable.

Dee, my mom has not been happy since I can't remember when. She argues with me, yells and screams at me, etc. etc. etc. and sometimes I just have to step back and say ok, she's not the mom I used to know anymore. My mom doesn't want to live with anyone or have to depend on anyone, it makes her nuts because she's independent and thinks she can afford to go it alone, when in reality she can't. It seems that with aging comes a part of unhappiness for some, like my mom.
Could it be that your mom is afraid to be alone ? I don't know her but sounds like it.
When my stepfather died, I took the brundt of my mom's anger and since then it's not ever changed. She's nice to my sisters but I"m the one that gets yelled and screamed at and told things that stings really deep, that are truly ugly. I fully understand where you're coming from . I just can tell you from experience, to keep going to therapy, it will help you learn to step back and not take it personally as much at times.....not all the time......but sometimes you'll be able to.
If you need anything let me know.

[Teddybear]

Do you think for some it's a calling? Like some folks always seem to end up in a caregiving role.

In my group yesterday there was a lady there who was widowed, then her boyfriend who she was also caring for didn't want her there anymore. She was so lost. She said the same as you , she felt she has no purpose. Why do we feel we have to be caring for someone to have a purpose????

i was not asked to do this, i chose it.

i moved back to New Orleans, bought a house with an apartment/cottage in the back to put her in, because she wanted to be closer to her kin, only she has complained about just about everyhting and not found any happiness.

She wants to be IN my house. i want to live alone, and for the most part she is in here anyway, i don't want her here when i wake up and go to bed! There is no reason for her to be.

i was dillusional when i thought she would be happy in her little home. She clearly is not, and reminds me daily that she wants to be IN my house.

Bottom line is that there is old stuff.. that i will never be enough and she will always be miserable.


I dont know if ppl r called to take care of loved one or not.

When both of my partners got sick and we knew they were going to pass I CHOOSE to stay.

I can say that neither of them really was one to complain however I know that no matter what you do for some it will never be enough. I had a friend who took care of her father and he was a piece of work.

By the time they had to find a home for him there was so much animosity tween all the family members it wasnt funny.

I swear if i have to take care of my parents i will but my brothers better b there to give me a break when needed

[PoeticSilence]

I'm the caregivee. My wife is the caregiver. I think that a person who has gone from being productive and successful and even adventurous has a right to be angry with themselves when they lose those qualities unwillingly. That being said, I don't think it's right to take it out on your caretaker. I know I've done this, but the times are few and far between. Usually it's happened after a lot of frustration has built up and she's wanting some recognition for what she's going through too, and somehow, I haven't done that.

It can start easily, maybe she was putting my leg wraps on, and making me feel like she was rushed or maybe she inadvertently bumped my other leg while passing the wraps over and under. Of course I'll say Please be careful, be careful of my legs. She'll get exasperated and claim that she is, with that tone that means she's heard this before. Maybe I'll feel the wraps are too loose and say so, and she'll say they aren't, and of course within a few hours, they are so loose, they've come undone. It can be the smallest of things. A tone. A sigh. A look. A certainty of being ignored, rushed, refused. I imagine it's the same for nearly everyone.

We've worked it through, but still we can have our days. She just needs to get out of the house, go to a movie, go out to eat. Just go away. I can't really go away. Maybe I can go to another room and stay there so she has some time to herself. I try to do as much for myself as I can, but even I had to come to grips with what I can't do. She worries about going too far in case I fall or get hurt (a brush with a empty cardboard box tore my leg open and it took months for that tear to heal).

I think we've worked out a lot of things, and she meets with my doctors after I have, in case there're things she's concerned about or wants to talk about privately. I also have to remember to recognize her, thank her for cooking, tell her what I did like about it instead of what I didn't like about it. Offer to fold the laundry since she's washed and dried it. Try to keep my side of the bed made when I'm getting up so that she doesn't have to. My arms aren't too badly affected so I offer foot rubs.

The most important thing I have to do is that when I'm frustrated, I have to remember not to take it out on her. She's likely just as frustrated as I am. I try not to deal with social security or things that will get me upset when she's around at all. And most importantly, I have to remember to thank her sincerely for what she does for me. Usually at night before she goes to sleep. I want to make sure she knows that I know that she's valuable to me and not just some health care giver that I got stuck with.

[Rockinonahigh]

When my grannie finialy became so forgetful she didn't know where she was nor could she deal with the live in sitter I finealy went to night school to finish high school and cared for her myself,this went on for a couple of years.One morning I got up to my mother asking me where she was,I said check the bathroom,well grannie had some how unlocked the safety latches and was no where to be found.She was almost 80 at the time,I called the police,any and every one I knew,the mounted patrol that I belonged to got involved so for three days no one knew where she was.Then a friend of ours who owned the old family grosery
about a mile from home called to tell us they had her at the store,they herd something going through the garbage cans' thinking it was an animal so went to check it out then found her then called us.She was starving,covered in bug bites whit scratches plus bruises.I went to pick her up.thank goodness she knew who I was,I had her checked out by a doctor that said she was just a lost person who was probly on the river banks from the injuries she had but no one had done any thing to her thank goodness.We put her in a care facility that took really good care of her.BUT,I was the hardest thing I had to deal with at the time.We all blamed our selves for not being more aware of her roaming the house at night,but she had never done anything like that before.
Till the day she passed I went every day after school,brought her home on weekends and holidays there she was put on meds to help her be easyr to deal with.I'm glad she had such good care at the home but wish I could have done more,now I know I did all I could so did mom.The other family members,some did what they could some fell into the void.
Dee just take it one day at the time,go to what ever help group you have,as for the family that dosent feel they could help you cant' change them,I know I have tryed.One thing that could help is adult day care,I worked in one for a long time it was godsend for the families of the people that came that came,we had a nursing staff with a staff that really cared for everyone.I will send you all the energy I have to send.Take care .

[Nat]

I love this thread. Even for those of us who aren't primary caregivers now, there's a time when many of us will be on the caregiver or caregivee side in the future. Whichever side we fall on, I think it's helpful to have more understanding beforehand.

And as the daughter of a primary caregiver, I'd love to know how those caregivers here are most in need of support. As a caregiver, what most do you need from your loved ones who are not in the caregivee role?

[dykeumentary]

I love this thread. Even for those of us who aren't primary caregivers now, there's a time when many of us will be on the caregiver or caregivee side in the future. Whichever side we fall on, I think it's helpful to have more understanding beforehand.

And as the daughter of a primary caregiver, I'd love to know how those caregivers here are most in need of support. As a caregiver, what most do you need from your loved ones who are not in the caregivee role?

I take care of my mother- not living full time with her, but 2-3 days a week.

It was interesting to think about the question of what support i need.
When I was recently hospitalized and then recovering, my friends took up my responsibilities to mom- and that was an amazing blessing (not least because it involved travel to her).

Also fascinating to have to be the one receiving the care, instead if giving it. (A short video about my illness is in my signature link)

I'm single, and starting off trying to schedule dating around eldercare can be tricky and/or embarrassing. I know I should think "If someone can't handle my devotion to my mother, it's a bad match!" But what if the woman is really hot and I just want to date her? Anyway.
When I had to live with my mom (she had a more serious situation then) it was also awkward to not be able to bring women home.

People have told me that I'm "tied to my mother's apron strings" and that it's usually a gay (male) clichè to fret over one's mother. As always, it comes back to sexism and homophobia I guess.

Ever since I started taking care of Mom I've wanted to make a dykeumentary about how lesbians - who were often kicked out their families for their sexuality (and/or gender expression) are the ones who end up doing the eldercare. Is there already such a film? If not, should we make one?

[Happy_Go_Lucky]

How incredibly emotionally draining for any of you who find yourself in a caregiving situation with someone you love.

That being said, my situation is being the primary medical POA to my male parent. Did I mention he is a POS?

I believe it may be easier to deal with a parent whom you loathe as opposed to having warm and fuzzy feelings to someone you adore and like?

Any thoughts?

[Teddybear]

NImr t How incredibly emotionally draining for any of you who find yourself in a caregiving situation with someone you love.

That being said, my situation is being the primary medical POA to my male parent. Did I mention he is a POS?

I believe it may be easier to deal with a parent whom you loathe as opposed to having warm and fuzzy feelings to someone you adore and like?

Any thoughts?

I struggle with the thought of one day being the caregiver of my father. I KNOW its going to fall on me. We barely speak he was still tried to b emotional abusive I learned to turn that off long time ago. I'm still dealing with his.chit from childhood damn sure don't want to deal with new chit now or in thefuture. Both of my brothers just hang around thinking when they r gone there is some money to get. We all were raised by these.ppl where they think they have money is beyond me.

I pray daily that if it comes to me caring for him that the anger, and fear I have for him will not show and that I will make WHATEVER time he will have left will b comfortable and some hoe loving

[TruTexan]

Nat, to answer the question of what I need from loved ones because I am a caregiver to my mom..............
I need support, I need relief, I need to have a life of my own and not just one that encompasses mom. But the latter will have to wait as I don't live in a community that has any lesbians around, so I have no close friends near and I haven't seen the few friends I had in Austin in a long long time. I do once in a while, save up money to go see my cousins and stay gone for a few days, but it costs me a financial hardship to do so because I live on a limited SSDI income. The only person that I can talk to about my stress levels when mom gets into her "moods of yelling and ranting" is my shrink that helps manage my care for my ptsd/anxiety and depression. I know mom doesn't mean to do and say the things she does, and that she truly does appreciate me helping her when she needs my help. I know and understand how she feels as well. I get it. I too have lost a a part of me in my disability and not being able to work anymore, I"m physically disabled on top of the other.

Ok, hope more people post. I have subscribed to this thread. Thanks Dee, for starting it.

[TruTexan]

Today's stressors came in the mail for mom today.
Letter 1 from social security stating they are taking away her SSI.
Letter 2, 3 and 4 are taking away her food stamps, medicaid, and assistance in paying her medicare payments and assistance with her RX costs.........trickle down effect from a mofo typo in the system between VA benefit amounts she will be receiving Dec.1st and her SSI/Social security being notified electronically. SOMEWHERE SOMEONE WITH FINGERS THAT DON"T WORK AND A MIND THAT CANNOT COMPREHEND that she actually receives 110 from VA NOT 220 in Dec. 2013 caused this f'n problem. NOW I have 15 days to get the system fixed so to RESTORE mom's full benefits of everything they took from her. THIS KINDA SHIT PISSES ME THE F OFF. I am so freaking stressed out today from making calls that would do nothing for her today, that it's pathetic. Turned it over to my younger sister to see if Social Security will talk to her, she's signed on as someone that can talk to them about mom's case with her case manager, even though mom was sitting in the room telling social security to talk to me about this to get it resolved before DEC 1st.
Why can't they get this shit right?? IS it that f'ng hard to do that job? JESSSUS H CHRIST man.
I hope that mom will move to TN to be near my younger sister whom handles most of the issues like this, so she can take care of her better than I can. My sister bought a home for her to move into but mom refuses to go there.
Mom cried so hard today when she read those letters then blurted out she was better off dead. I had to step in and get her mind right and tell her it was going to be alright. The stress that she already lives under with not enough money to live on and now this, just broke her today. All I could do was tell her it would be alright that we ...my sister and I... would make sure it got fixed. Then I find out that next year, the VA, Social Sec. and SSI are all giving a 1.5 percent pay raise next year in Jan 2014. so I'll have to go through another reporting of mom's income changing as soon as she gets that increase and deal with that then Before they start saying AGAIN that she owes back pay because they overpaid her like they did this year and the year before. IT's a never ending fucking battle with the gov't. and I'm just sick of it. Why can't they just make it more simple and do the job right the first time.
SMFH@ the system.

Anyone else dealing with this kinda shit yet???? I hope not.

[girl_dee]

I love this thread. Even for those of us who aren't primary caregivers now, there's a time when many of us will be on the caregiver or caregivee side in the future. Whichever side we fall on, I think it's helpful to have more understanding beforehand.

And as the daughter of a primary caregiver, I'd love to know how those caregivers here are most in need of support. As a caregiver, what most do you need from your loved ones who are not in the caregivee role?

nat, i adore you!

I am going to read thru the post but i was reminded the other day that sometimes we are caregivers of ourselves, always.

Ever had to put your own needs above all else?

Thats a hard thing to do, and that in itself can be stressful.

[girl_dee]

The support group i went to the other day was all
About self care for the caregiver.

It was about admitting that its ok to be upset and losing patience. Its to want some time away.

A lady spoke up who has been married for 45 years to her beloved. He had a stroke. He is angry at the world and takes his frustration out on her.
She broke down and said she is ANGRY as hell because this is not the retirement she planned on. She does not know this post stroke husband. She feels robbed. She is at her wits end and i was glad she attended.

Helps me feel not so bad about my own situation.

[girl_dee]

How incredibly emotionally draining for any of you who find yourself in a caregiving situation with someone you love.

That being said, my situation is being the primary medical POA to my male parent. Did I mention he is a POS?

I believe it may be easier to deal with a parent whom you loathe as opposed to having warm and fuzzy feelings to someone you adore and like?

Any thoughts?

Yes. Why are you doing this? What in us makes is us do such things .

Syr says i am an emotional masochist :|

[TruTexan]

My mom draws a small check from the VA as a widow because of my stepdad's passing. She also draws SSI and social security. This month mom got a letter from social security saying she would be drawing double her VA benefits due to the VA matching data it received. Guess what happened? It was a MISTAKE that caused her to lose her SSI benefit which in turn stopped her medicaid, which in turn stopped her Medicare premium payments, which in turn stopped her Rx assistance program, which in turn stopped her Food stamps. All because the VA is now using a computer matching program that sends the information the widower receives about her VA amount to the Soc. Security Administration which caused a DOUBLE amount to be shown as being received next month, which stopped all the benefits she was getting by the end of this month, NOV. 30 2013. Between my sister and I, we were able to get social security to get the correction made, but still have to now RE-APPLY for mom's food stamps SNAP benefits. Her check from SSI will be late next month if not the month after, and I'm still not sure if her Medicare savings program for paying her medicare premiums and extra help with her Rx 's will still be in effect for next month due to this mistake. Soc. security says it should be alright, but to reapply for snap food benefits which will take 30 days to get it processed, so mom's food stamps probably won't be here in time on the 1st of DEC. like she needs it to be. This new matching system between the VA and social security has caused problems for many widowers that I saw in the Human Resources Dept. complaining about all their benefits being stopped due to the same problem I am helping my mom deal with NOW.
IF you have a parent you help , watch for this issue, and get on it right away or it's going to be a mess if you don't. JUST FYI. If you need any help with this , let me know, I've dealing with it now.
Justy.

[girl_dee]

My mom draws a small check from the VA as a widow because of my stepdad's passing. She also draws SSI and social security. This month mom got a letter from social security saying she would be drawing double her VA benefits due to the VA matching data it received. Guess what happened? It was a MISTAKE that caused her to lose her SSI benefit which in turn stopped her medicaid, which in turn stopped her Medicare premium payments, which in turn stopped her Rx assistance program, which in turn stopped her Food stamps. All because the VA is now using a computer matching program that sends the information the widower receives about her VA amount to the Soc. Security Administration which caused a DOUBLE amount to be shown as being received next month, which stopped all the benefits she was getting by the end of this month, NOV. 30 2013. Between my sister and I, we were able to get social security to get the correction made, but still have to now RE-APPLY for mom's food stamps SNAP benefits. Her check from SSI will be late next month if not the month after, and I'm still not sure if her Medicare savings program for paying her medicare premiums and extra help with her Rx 's will still be in effect for next month due to this mistake. Soc. security says it should be alright, but to reapply for snap food benefits which will take 30 days to get it processed, so mom's food stamps probably won't be here in time on the 1st of DEC. like she needs it to be. This new matching system between the VA and social security has caused problems for many widowers that I saw in the Human Resources Dept. complaining about all their benefits being stopped.
IF you have a parent you help , watch for this issue, and get on it right away or it's going to be a mess if you don't. JUST FYI. If you need any help with this , let me know, I've dealing with it now.
Justy.


Good Gods.... now that must be extremely stressful.
My mother only gets SSI and medicare. She pays for supplement insurance everymonth. It works for her. She has had some serious medical issues and it saved her from going into debt. Its a good insurance and she loves the peace of mind it gives her.

Then my sister decided mom needs to stop *wasting* $200.00 a month for supplement insurance. i disagreed. i have enough to deal with where my mom is concerned and chose NOT to deal with this. i told my sister she can take this issue up with my mom. She did, my mom said she didn't want to leave her insurance because its a good one and she trusts it.

That should have been the end of that.

She mentioned it to me and i told her that i was not interested.

THEN my sister writes to me a long snarkly email about the issues with my mother and once again turned it around that she is a victim of some sort.

Yah that ended well!

[girl_dee]

i've never heard of people on SSI getting food stamps. How does this work?

[TruTexan]

If you are getting SSI and social security, you may qualify to get food stamps....New name is called SNAP, Supplimental Nutritional Assistance Program. Apply at your local office, make sure you give them a copy of your SSI benefit letter(if you don't have one call social security and ask them to mail you a copy of your benefit letter for SSI it's diff. than social security), and any other income you get. IT varies from state to state the amount you can recieve in SNAP food benefits. Also, if you qualify and receive SSI and social security, you can most likely qualify to get your state to pay for your medicare part B and D premiums (or most of them) and possibly even for getting medicaid. This depends on the amount of money you get each month and what your state allows. Please contact you local food stamp office to ask about snap and medicaid applications for paying for your medicare premiums. You can also contact social security to ask them about an application for EXTRA HELP for paying for your medications too. . Fill them out, you never know what you qualify for.

[TruTexan]

Dee, I sent you a couple pm's you might could use for info.
Justy.

[girl_dee]

Dee, I sent you a couple pm's you might could use for info.
Justy.

i got them and thank you.



My stress with my mom is not so much on the finance end, although she would be in a home if she did not live with relatives.

My stress is frustration. Frustration with her enjoying being helpless, her being inconsiderate and unappreciative. i am also very much aware that i put myself in this situation again.

[Jar]

i got them and thank you.



My stress with my mom is not so much on the finance end, although she would be in a home if she did not live with relatives.

My stress is frustration. Frustration with her enjoying being helpless, her being inconsiderate and unappreciative. i am also very much aware that i put myself in this situation again.


You're doing the best you can and you have a big heart like me. You're in a tough place and she yanks that guilt cord. If it's any consolation I would've done the same as you have .... Really sorry Dee

[girl_dee]

You're doing the best you can and you have a big heart like me. You're in a tough place and she yanks that guilt cord. If it's any consolation I would've done the same as you have .... Really sorry Dee

Jar, you have no idea how much these words to me. Truly. i feel like no one gets me, and everyone thinks i am just stupid for doing this, again. Thank you.


i feel all i hear is *close your door, lock her out, tell her to go home, set her straight, don't do this don't do that, TELL her ... " especially from those who would never speak to her this way, like my sister.

and although all those things are the logical thing to do, they are not who i am.Maybe that's why i am in this situation. i feel i can do all those things and not in a way that makes things worse.

When i explore WHY i do this *thing* with her, and i do, i know its because of my upbringing, wanting that acceptance, but i am here now, i have to live with myself, and for me i have to figure out a way to make this work so i am not completely insane, and its one day at a time. New challenges everyday with her.

i came home today from work, and closed my door (signal for stay out!) and spent a while just being home and also sending a message that i am not available 24/7. The whole time i knew she was back there waiting for me to open the door. i am trying to train myself not to think about that and just *be*. THat is the part i am struggling with.

After two hours i texted her to tell her that she could come over and watch tv with me if she wanted to. No reply and she was in the door within 15 seconds.

i basically have to kick her out every single night to give myself time before bed. It feels like i am kicking her out, because going to her place is pretty much the worst punishment in the world.

Its hard to live this way, but i have faith that it will get better and we can get through this.

[TruTexan]

Dee, I do hear you and I do get you. I totally do. I get that she's driving you insane or making you feel that way. I get that you are doing this because of your upbringing.....same here with me and my mom. I DO understand that you have to put your foot down about your mom being over all the time, and I totallly get that ....totally. I Live in a seniors and disabled community and the neighbors around me are constantly knocking on my door and needing mo for something. I had to pretty much get ugly about it because trying to tell them in a nice way that they are too needy just wasn't getting anywhere, and all the complaining about themselves. MAJOR stress overload on me and my own shit ya know. Then I have to deal with my own mom and how she treats me at times. OMG talk about major fucking ptsd/anxiety/depression overload,, can you stay stick a fork in me I"M DONE !! Now that I've gotten the point across to most of my elderly neighbors that I"m not available at their beckon call, that part of my stress is reduced a little. BUT, I still have my own crap to handle and then stuff going on with my mom like the shit I am NOW dealing with. Somedays I just wanna move the fuck away and be done with this, but then that part of me that says NO she's your mom stupid, do what you gotta do ,,,, kicks in inside and I stay. I've given up having a relationship with anyone because I take care of mom even though I don't live with her, I still have too much on my plate to even date anyone. .......besides the fact that I live in BFE little town heehaw tx that doesn't have any gays around here. UGH just another thing I deal with. I miss Austin, I miss my few friends there, I miss my cousins and my other part of my family that I connect with, and someday I want to move back to Austin area or atleast near there. I love it there, but alas, I took on my due dilgence to take on my mom and be here for her and any and all issues that come up be it going to doc. appts or fixing something with the car, her house or anything else that goes haywire like paperwork and such. I do what I can on my end, and my younger sister that lives in TN, she takes care of the bitching at social security and paying some of mom's bills for her out of her own pocket cause mom can't afford things like car insurance, etc. If it weren't for my younger sister, my mom would be really in much worse shape than she is. SO, I get EXACTLY where your coming from. I'm just sorry your mom doesn't appreciate anything about you and what you're doing for her.
Atleast mine will apologize to me an then cry and tell me thank you for helping her after she's yelled and screamed at me about her frustrations and whatever is bothering her. I"m sure you're not even getting anything like a thank you at all or even apology for anything she's said or done in the wrong to you and for that ................I can understand your frustrations with your mom and family with what they tell you that you should do. It's not that easy is it ? I KNOW IT"S NOT....period.
Hang in there my friend. Hang in there.


OH and I don't deal with stress on any level anymore. I can't take it or handle it most of the time. My ptsd and anxiety disorder has trumped those coping tools.

[TruTexan]

Dee, here is a link for the Medicare Savings Program cause your inbox is Full.

This covers the QMB , SLMB, QI stuff I sent you a note about. Just read up on it for information there should you need it.

http://www.medicare.gov/your-medicare-costs/help-paying-costs/medicare-savings-program/medicare-savings-programs.html

[RockOn]

I left Atlanta and moved back home in 1982 to care for my terminally ill mother. I took her to the hospital for her chemo treatments, spent the nights with her in the hospital. The nurses were so good to us. They would wrangle a cot into my mom's room for me to sleep on. I have always raided the refrigerator at least once during the middle of the night. The nurses did not scold me for staggering out of my Mom's room half asleep in pajamas to get a couple of pints of chocolate milk and eat anything I found that looked good.

Dee, I want to make a couple of suggestions since you are involved in a difficult situation. Take great care not to let your battery run low. Also, it is very important that you make time for you and take it.

Best Wishes to You!

[Okiebug61]

Yes. Why are you doing this? What in us makes is us do such things .

Syr says i am an emotional masochist :|

Some of us believe we can change a past a person an attitude or the future. The truth is we can only control that which is in our control and that is ourselves.

[girl_dee]

Some of us believe we can change a past a person an attitude or the future. The truth is we can only control that which is in our control and that is ourselves.

Yes, i feel i've done what i needed to do, now i need some self preservation.

The day will come where she is dependent on me, and i know it, but right now ain't the time.

[girl_dee]

Dee, I do hear you and I do get you. I totally do. I get that she's driving you insane or making you feel that way. I get that you are doing this because of your upbringing.....same here with me and my mom. I DO understand that you have to put your foot down about your mom being over all the time, and I totallly get that ....totally. I Live in a seniors and disabled community and the neighbors around me are constantly knocking on my door and needing mo for something. I had to pretty much get ugly about it because trying to tell them in a nice way that they are too needy just wasn't getting anywhere, and all the complaining about themselves. MAJOR stress overload on me and my own shit ya know. Then I have to deal with my own mom and how she treats me at times. OMG talk about major fucking ptsd/anxiety/depression overload,, can you stay stick a fork in me I"M DONE !! Now that I've gotten the point across to most of my elderly neighbors that I"m not available at their beckon call, that part of my stress is reduced a little. BUT, I still have my own crap to handle and then stuff going on with my mom like the shit I am NOW dealing with. Somedays I just wanna move the fuck away and be done with this, but then that part of me that says NO she's your mom stupid, do what you gotta do ,,,, kicks in inside and I stay. I've given up having a relationship with anyone because I take care of mom even though I don't live with her, I still have too much on my plate to even date anyone. .......besides the fact that I live in BFE little town heehaw tx that doesn't have any gays around here. UGH just another thing I deal with. I miss Austin, I miss my few friends there, I miss my cousins and my other part of my family that I connect with, and someday I want to move back to Austin area or atleast near there. I love it there, but alas, I took on my due dilgence to take on my mom and be here for her and any and all issues that come up be it going to doc. appts or fixing something with the car, her house or anything else that goes haywire like paperwork and such. I do what I can on my end, and my younger sister that lives in TN, she takes care of the bitching at social security and paying some of mom's bills for her out of her own pocket cause mom can't afford things like car insurance, etc. If it weren't for my younger sister, my mom would be really in much worse shape than she is. SO, I get EXACTLY where your coming from. I'm just sorry your mom doesn't appreciate anything about you and what you're doing for her.
Atleast mine will apologize to me an then cry and tell me thank you for helping her after she's yelled and screamed at me about her frustrations and whatever is bothering her. I"m sure you're not even getting anything like a thank you at all or even apology for anything she's said or done in the wrong to you and for that ................I can understand your frustrations with your mom and family with what they tell you that you should do. It's not that easy is it ? I KNOW IT"S NOT....period.
Hang in there my friend. Hang in there.


OH and I don't deal with stress on any level anymore. I can't take it or handle it most of the time. My ptsd and anxiety disorder has trumped those coping tools.


Thank you, and thank you for the PMs with lots of information.

For me, i DO enjoy her company, i can talk to my mom about anything. We love doing the same things, flea markets, garage sales and good ole trip to wal mart. i love that someone is around here, what i don't love is her smothering me.

She will apologize this way "go, go have fun, its not your fault you have a life and i don't" Thats her version of an apology. :|

She sits in pity land watching my neighbors come and go, She misses working. Work was her ONLY social activity. She still goes to visit people where she used to work and envies them. She just point blank hates getting old.

[TruTexan]

Thank you, and thank you for the PMs with lots of information.

For me, i DO enjoy her company, i can talk to my mom about anything. We love doing the same things, flea markets, garage sales and good ole trip to wal mart. i love that someone is around here, what i don't love is her smothering me.

She will apologize this way "go, go have fun, its not your fault you have a life and i don't" Thats her version of an apology. :|

She sits in pity land watching my neighbors come and go, She misses working. Work was her ONLY social activity. She still goes to visit people where she used to work and envies them. She just point blank hates getting old.

Is there some type of community center that is open to the elderly during the day near you so you can get your mom some activity going like being around folks her age and playing dominos and card games , bingo, etc. That tends to help if you can find some stuff for her to do during the day. Here where I live, the elders get together and do those things so they aren't stuck at home bored and such. They can visit and talk, etc. I kinda figured that your mom was as you described above. She's bitter about not being able to work. Heck, it might even help if you got her into therapy if you could so she can talk to someone else besides you about how she's feeling. My mom doesn't think she needs any help so I have no way to get her behavior any better, so It's me that gets the therapy.
I get you when you need to have a life of your own and need not to be smothered by your mom. I think I"d go nuts if my mom smothered me on top of all the other stuff that goes on. I KNOW I'd lose my coping skills in some way. When I Lived with her, it was worse than it is now, so I moved out, couldn't take it anymore. It's better than it was at least for now.

This past year, my sister bought a place that she remodeled, in TN down the road about 10 mins from her house, so she could try to convince mom to move into so she could be closer to her when she needed to be. I"m game for her moving, but mom is adamantly saying NO WAY. She doesn't understand that she can't afford to move into low income housing and her house is falling apart due to termites over the years. I"ve done all I can do with keeping if livable, but the time is coming soon that she will need to move out of it. Thanksgiving my sister will be here a week staying at mom's and I'm sure she's going to talk to her once again about her moving to TN to live in that home she got her and fixed up. It's in excellent shape and is on a beautiful piece of property. Mom could live there and not have to pay rent, just bills and if she can't afford all of them, my sister would help her pay them. I hope that she comes to realize that it's the ONLY option she's got. I can't help her financially.

[Gemme]

Thank you, and thank you for the PMs with lots of information.

For me, i DO enjoy her company, i can talk to my mom about anything. We love doing the same things, flea markets, garage sales and good ole trip to wal mart. i love that someone is around here, what i don't love is her smothering me.

She will apologize this way "go, go have fun, its not your fault you have a life and i don't" Thats her version of an apology. :|

She sits in pity land watching my neighbors come and go, She misses working. Work was her ONLY social activity. She still goes to visit people where she used to work and envies them. She just point blank hates getting old.

Does a bus line run close to your home? Is there somewhere she could volunteer? It sounds like she felt useful at work and if she could be useful again, maybe that would cut down on some of the vinegar that you're on the brunt end of.

[TruTexan]

i've never heard of people on SSI getting food stamps. How does this work?


Dee, that special program for SSI....suplemental security income......recipients has to be done with the social security office by asking them to do a Manual Request for Certification for Medicaid in the computer system so SSI sends that information to the health and human services dept. so that they can get on the special program to recieve the highest benefits for food stamps, get their medicaid, and get on the Medicare savings program. IF you apply for food stamps seperately by online or filling out the application even though they are getting an SSI check, the food stamp amount will be lower. I dont' know why exactly, but This is what has happened to my mom today. I was in contact with the main office in Austin today that told me social security needed to send that manual request for medicaid certification in the computer system so they could restore the correct benefits and correct amounts she SHOULD receive via the SSI special program.
Just an FYI for you. oh, and SS is not the same thing as SSI they are two seperate checks/benefits.
SSI is ususually given to those that don't draw enough SS pay and there is a yearly allowance made to cover the difference by getting SSI benefit with SS.
IF you dont' understand any of what I'm saying, call me, I'll be glad to explain it to you, anytime.

PS..........
If you don't get SSI because you make too much SS then you must apply for food stamps via the regular application process.

[girl_dee]

Is there some type of community center that is open to the elderly during the day near you so you can get your mom some activity going like being around folks her age and playing dominos and card games , bingo, etc. That tends to help if you can find some stuff for her to do during the day. Here where I live, the elders get together and do those things so they aren't stuck at home bored and such. They can visit and talk, etc. I kinda figured that your mom was as you described above. She's bitter about not being able to work. Heck, it might even help if you got her into therapy if you could so she can talk to someone else besides you about how she's feeling. My mom doesn't think she needs any help so I have no way to get her behavior any better, so It's me that gets the therapy.
I get you when you need to have a life of your own and need not to be smothered by your mom. I think I"d go nuts if my mom smothered me on top of all the other stuff that goes on. I KNOW I'd lose my coping skills in some way. When I Lived with her, it was worse than it is now, so I moved out, couldn't take it anymore. It's better than it was at least for now.

This past year, my sister bought a place that she remodeled, in TN down the road about 10 mins from her house, so she could try to convince mom to move into so she could be closer to her when she needed to be. I"m game for her moving, but mom is adamantly saying NO WAY. She doesn't understand that she can't afford to move into low income housing and her house is falling apart due to termites over the years. I"ve done all I can do with keeping if livable, but the time is coming soon that she will need to move out of it. Thanksgiving my sister will be here a week staying at mom's and I'm sure she's going to talk to her once again about her moving to TN to live in that home she got her and fixed up. It's in excellent shape and is on a beautiful piece of property. Mom could live there and not have to pay rent, just bills and if she can't afford all of them, my sister would help her pay them. I hope that she comes to realize that it's the ONLY option she's got. I can't help her financially.



Trust me i've thought of this. My mom is only 75. She does not resonate with older folks and has never, ever had friends. She won't go anywhere unless it's with me or someone close.

[girl_dee]

Does a bus line run close to your home? Is there somewhere she could volunteer? It sounds like she felt useful at work and if she could be useful again, maybe that would cut down on some of the vinegar that you're on the brunt end of.

i've thought of this too. She can drive around here so that's not the issue. i've mentioned volunteering and doing stuff. She does not feel well everyday and her immunity is still VERY bad, still she could do ANYthng but sit around here feeling sorry for herself, waiting for me to walk in.


BUT if it were her idea to do ANYthing i would not care, at least she would have some sort of quality of life.

[TruTexan]

Trust me i've thought of this. My mom is only 75. She does not resonate with older folks and has never, ever had friends. She won't go anywhere unless it's with me or someone close.


I hear ya, my mom is 72 and hates visiting anyone. She doesn't have any friends that she talks to and mostly it's ME and I hear the same stories ,etc all the time. Wears me out as I'm sure it does you as well.I wonder why it is that our 2 moms are like this? It's like they don't wanna do nothing to make themselves happy at all or bring them joy. Almost like it's TABOO for them. SMH*

OH and I'm still having to deal with mom's benefits issues. Damn social security hasn't done entered into the computer the manual request for medicaid so mom's benefits are restored and so I can get Austin health and Human services to FIX the problems with her benefits and benefit amounts. This is a fucking nightmare. I've contacted my state senator and gotten them involved in it and now today contacted my local congressman to get them involved in this and to make a formal complaint on mom's behalf that there is a fucking problem with the system checks and balances betweent the VA computer matching program and Social Security Doubling the benefits and knocking her out of SSI benefits which in turn cause the fucking nightmarish snowball effect for ALL of her state benefits. Hopefully sometime next week this will ALL be resolved so she is restored in the system BEFORE DEC> 1st when her benefits are due to come for that month. And BEFORE THE END OF NOV 30th when they are to STOP existing for her.
I wouldn't wish this shit on anyone I hated ..........just saying.

[TruTexan]

ok, I"ve been running my ass off this week to take care of sending paperwork and make phone calls to diff. agencies to help mom get her benefits back. Today, I was so damned tired I laid down to take a short nap, and slept for over 4.5 hours. I think my body and mind just needed to shut the hell down and regroup because of all the stress. I woke up still feeling tired though and I hope I can sleep tonight. I know when this is all over with in the next few months, omg that long?, I will probably sleep for a freaking week, just to regroup. UGH.

[girl_dee]

Even with all the stress, smothering and clinging on to me for dear life i am thankful that my mom isn't as sick as she was and will enjoy a nice holiday with the family together again.

Last year she was pretty much near death and none of us really knew. She hid it well. She told me she is very afraid of dying. i know she thinks about it a lot.

[PoeticSilence]

It took me a while to catch up, but I'll toss in a couple notes. When I was trying to figure out how wait on disability to kick in (still waiting) I started looking up state agencies for aide, and my pharmacy and my doctor worked out something where I get all but one of my meds for free. The other one I pay seventy five dollars a month for. That's a four hundred dollar a month burden lifted from my shoulders.

The other program was with NE state social services. They set me up with foodstamps, and Medicaid for my wifes' son, we are still working on me and my wifes' Medicaid. They also gave us utility assistance, it was only like four hundred dollars for the entire year, but believe me, that was very helpful because I live in a very cold place when winter hits.

I have totally humbled myself while I wait for my long term disability to recognize my inability to work, and for my SSD to kick in, and I called every charitable organization in my city, including churches to see what sorts of aide I could get. One place that was invaluable was a place that rents out things like wheelchairs and reclining chairs that help you stand, and oxygen concentrators. My concentrator costs me four hundred dollars a month to rent it out, but I'm working something out with them right now since I no longer have insurance. If that doesn't go through, I'll go back to the place I got my wheelchair from and rent that concentrator they have for like fifty dollars a year.

Call everyone, even your local YWCA and see if they have any programs to help an elderly woman and give them your specifics. I've even been offered a weekly class for free on dealing with my disability stress. At one of the hospitals they have a special swimming pool for disabled people and I'm waiting to be notified of my SSD before I can apply to use the pool. Now remember, I'm the caregivee, not the caregiver, but I'm sure they'll have something for you as well. There are plenty of potlucks and meetings for caregivers in my community, you really just need to check around.

My AARP newsletter and the AARP site also had a ton of information about services available to me and my caregiving wife. Don't forget to give them a shout out.

[TruTexan]

OK, good news: My mom's state benefits have been reinstated as of today, but they are still working on reinstating ALL of her food stamp benefits like she had before in the special SNAP Cap program. Since I had to re-enroll her for Snap, they cut her food stamps down from 65 to 29 without the special program she was in. So, they are working on that part of the last thing to fix, and I Hope they can give them all back to her, she needs every bit of them she can qualify for under that program.The Bad News: My sister found out my mom's SSI check and Social Security check will both be late in December and the only thing on time will be her tiny VA check on the 1st of Dec. So, my sister took mom to walmart and got her some stuff she needed and I hope she went to the grocery store as well. I'll be helping mom with money come the 3rd of Dec when I get my own disability check so if she needs anything else, she wont be going without.
My younger sister and family are down from TN for Thanksgiving, and are staying at mom's so, no stress on me having them in my 1bdrm apt. I"m happy she was able to come down because we wouldn't get to see her for Christmas this year.

Dad is coming down day after Thanksgiving to stay with me for a week, that's a bit stressful, but I"m going to try and make the most of it, I haven't seen him in a few months and he's had another stint put in this past month. He's only got the upper part of his heart that works due to a major heart attack years ago causing the lower half not to pump. He is not that healthy with a bad heart, but he gets around ok. He's also diabetic and starting to lose his eyesight in his right eye he had surgery on it a couple years ago that didn't help any. I"m glad I get to see him and spend time with him. At anytime, he could have another major heart attack and I could lose him. I wish grandma was coming with him, but she's staying home and is going to enjoy her time alone from dad. She deserves it since dad can be a real pain in the ass to her.
Anywho, I hope all of you have a Happy Thanksgiving and are able to share it with loving family and friends.

[TruTexan]

I finally got my mom re-instated for her medicaid, medicare savings program, etc and still working on her Snap food stamps.....I just have to wait 48hrs to see if they are activated by then. By Jan.1, her Snap foodstamp benefits should be all on one card and not 2 because they had to do a supplement to make sure she gets her full amount she is due like she had before all this stuff got messed up. I'm glad the Congressman and State Senators for my district were able to assist in the matter and getting things going again. I'm grateful for their help. It's been very frustrating. My younger sister spoke to a head supervisor at social security and got them looking into the matter of the doubling of benefits to see if it's human error or computer issues. I also have my congressman and state rep. working to see if that is a nationwide problem. I hope it's not, if it is, man o man, it's affected thousands that are on SSI and VA widows benefits. I just hope it's fixed before Jan.1st so it doesn't happen again with the cola raises.

Hope everyone else is doing great !

[girl_dee]

My mother could benefit from the new programs offered but she is too stubborn to even look at them. She's happy with the insurance she pays for each month so i am leaving that subject alone.

Things have gotten much better. She waits i be invited after work at least. She still has absolutely no life outside of me but i cannot fix that. She has offers and could reach out but she won't. i just go on about my business and include her when i want to.

Its a sad existence but its all her choice. It weighs heavy on me but its much better.

[Rockinonahigh]

A quick note.In the doctors offices there is a magazine that has all kinds of agencies with phone numbers to a lot of services both nationaly as well as state wide,I can't remember the name of it but I haven't seen an office that didn't have a bunch of them..take one it's free.

[TruTexan]

So are all the other caregivers doing ok lately? I'm doing well so far. MUCH LESS stressed since I got mom's benefits all restored so far, we'll see how things go in Jan. 2014 when cola raises are here.

I hope all of you are having a much less stressful month this month, despite the holidays being upon us and that you all had a wonderful Thanksgiving.

[girl_dee]

The weekends are a challenge for me. My mother waits for me to open the door to let my dog out to pounce on me and she does not let go for two days straight. She comes in and i have to fight to get her back out again. Her apartment is so damn nice, its very upsetting to me that she is so unhappy in it. i worked so hard to make it a place of her own that she can do whatever she wants in and afford to stay somewhere besides a home.

i told her that i needed to make a call.. HINT HINT go home! She will leave with a *ok i'm going to give you your SPACE*.. or *i'm aggravating you aren't i????*.. or *ok i'm going so you can have your privacy*

Just once can't she go because she likes being in HER own space? Why make a comment?? Just go and be glad that we've spent the day together. Nope, there is non of that, just snark. The only time she is happy is when we are out shopping or hanging out. i keep thinking if i do the things she wants and needs to do she will back off, that does not work, as soon as we are done with one thing she is ready to do something else. She is miserable here and bored to death because her fear of the world keeps her locked up. She lives literally 10 feet from my back door and locks herself in anytime she is there.

i keep hearing that one day i will be sorry i am being this way because she won't be around. i am sure that is true,but right now, in this moment i feel smothered. AND i did this to myself.

She only wants to socialize if i bring her, she won't drive to see the family but pushes me to bring her. i am trying to understand what the problem is.
She does nothing to enjoy herself in her place/space. Just sits and stares at the TV if she is in there. There is no *homely* feeling in there, its just a place she hides until she sees me and runs over here.

AND of course the guilt over the way i feel weighs heavy on me.

[TruTexan]

Dee, maybe take her to see a therapist during the week? I think if you set up an appt. for her and take her, and explain to the therapist what's going on, maybe she/he could help. Just don't tell your mom it's a therapist. It's time to do something so you don't regret anything you have done and time to do something about the issues at hand so your mom understands too and possibly gets that in her head as well. I'm so sorry you're feeling so much guilt about what you feel you need to do for your own sanity, I hear ya, I had to see a therapist on my own just to get through some things about my own mom. I hope you will consider this and see about getting help like this. I think you will possibly get some relief going. Her Medicare will cover the cost of seeing a therapist less a copay of 20 percent if she's on Original Medicare and not a Medicare advantage plan, otherwise if it's Med. Advantage plan then it's whatever her copay is for them. (If she has only the Red White and Blue Medicare Card that's Original Medicare).

What my sister and I are trying to get our mom to understand is that her damn house is falling apart and she can't afford to live in a reduced income apt. because she doesn't make enough to make ends meet without rent already, and my sister bought her a home but it's in TN, and mom refuses to move there to be near my younger sister and leave me or my older sister here in TX. She's stubborn and doesn't understand what we try to do for HER, Especially what my sister has done. So, we just have to wait and see what happens with the house she's living in to fall in or something drastic to get her to move to TN. I just hope one day soon, she will come to appreciate the new home and want to move into it and move there.

[girl_dee]

Thank you but there is NO way on Gods green earth my mother would go to a therapist.

But i could use one!

[TruTexan]

Thank you but there is NO way on Gods green earth my mother would go to a therapist.

But i could use one!

Then by all means, go and get some relief for yourself and bounce some stuff of them, maybe there's something they can come up with to get your mom to be more active. Have you tried taking your mom to a seniors activity center on the weekends to see if there is any activities going on and get her comfortable enough to meet people and maybe start going? I dunno.

PS. My mom won't see a therapist either, that's why I WENT. lol

[JustLovelyJenn]

I have never really thought about the fact that I act as a caregiver until recently, when a specialist we were seeing suggested I might look into getting a caregiver to help give me a break.... I have a 9 year old son with high functioning Autism Spectrum Disorder, ADHD, and an impulse control disorder.

Its a lot of work, and a whole lot of stress... I am just going to follow along for now.

[TruTexan]

I just had some ideas Dee:
what if you talked with your mom and designated certain days she can come over and you two can play board games or card games together or regular dominoes? Maybe you can set up a few days a week that you can get your mom to start playing those games with you and in time, if she enjoys it, then you can ease her into going out to the local community center to play them with others her age group?

Or get her to volunteer with meals on wheels. If she doesn't drive she might be able to get someone in the area that does this, to pick her up and she can help prepare meals or even deliver food with someone, for those that need it.??
Just a couple Ideas that I hope might work for ya.

[Redsunflower]

I wanted to send out some hugs to all the carers around here just now.

[TruTexan]

I"m lucky my mom still does things on her own without me. She's pretty independent in that regard to getting around and doing stuff . I do however have to drive her to doctor appts out of town, she becomes a nervous wreck when in major traffic or going long distances. I take care of her needs when things with the home are concerned, if she needs anything personal and cannot afford it, mom comes first for me. I am the only one here that is willing to stay here and help her when she needs someone. My older sister lives 5 hrs away and is stubborn and hardly even calls mom anymore. My younger sister lives in TN and takes care of everything else mom needs such as roofing materials I need to put on the house to stop leaks, etc, and any major stuff like that that I cannot afford to do, but I do the labor work in return. I work to keep mom's car up to date and check it all the time, change the oil, tune it up, rotate the tires, etc. I just went through an ordeal with her losing all her major benefits and getting them reinstated. Finally, they seem to be alright for now, but we'll see come next month if they get screwed up again. Geeze I hope not. That was a nightmare to take care of. Anywho, I do what I do for my mom because she's the only mom I have and I love her, but I just can't live with her. We don't get along in that regard living together. Mom has OCD really bad and anything I do like wear socks or shoes in the house drives her mad crazy and she just loses it. LOL, so I live 15 miles from her, and keep my own sanity, and give her her own space she needs. It's best this way.

[Redsunflower]

Thank you for the welcome TruTexan.

Everything you describe sounds so familiar to me, I read your posts about the benefits mistake, I feel like I'm reliving all that frustration just hearing about your situation. Keeping calm and continually doing what needs done, in addition to all your own stuff, is not easy.

Keeping her car ok, I used to wonder why I did that for my ex when she didn't drive it for years but I did it anyway, the hospital appointments, always so many of them, one of the good things about all my ex's stays in hospital was that at least I didn't have to keep driving her there, how messed up is that?

Sounds like you and your mum living apart is a more manageable arrangement for you, that's great, you need your space.

As for the guilt...there's a conversation or 10 I need to have with my therapist.

Thanks for a great thread, I'll keep dropping by.

xx

[TruTexan]

I know that being a caregiver causes a lot of stress on each ourselves, we just have to remember that all of us need time to ourselves and sometimes therapy to cope with things that we are living with doing for our loved ones. I hope if any of you are feeling overwhelmed, that you seek out a therapist that you can trust to help you cope.
I know I had to after my stepfather died and I got the brunt end of mom's anger issues with losing him. It was aweful hateful on me and I about lost my sanity until I sought out help from my psych. doc that set me up to see a therapist so I could learn new coping skills to deal with my mom and her behavior towards me. It's better now that I don't live with her. At least now I can just get in my truck and go home to get away from her anger issues and yelling at me for things beyond my control or hers. She gets in moods where she's so angry and bitter about her life and how hard it is on her to survive and the loss of my stepfather and his help. I understand it but it doesn't make it right for me to have to be mom's target. It makes me nuts when she does that stuff. So now I just get in my truck and leave and go home to my own peace and serenity here in my little apt. just 15 miles from her.
Makes me sad that I have to do that, but I cannot be that target for her anymore.
I learned not to have any guilt about leaving her when she' s so angry and going home. It used to tear me up inside, but now I do not let it get to me that way anymore.

Keep coming back Redsunflower. Thanks for your input and story.

[Medusa]

I am the primary health advocate for my Pops.

We spent several years playing tug-o-war with one another about his health. Him refusing to get treatment and me getting angry, sad, resentful, hurt, anguished, and every manner of feeling in between. He agreed to get treatment back in August and we have spent the last few months going through various VA programs, getting him registered, getting his diagnosis, and rebuilding the tiny part of our relationship that suffered for the last few years.

This might be unfair but my stress level dropped 100 points when he walked in to the VA for the first time. Just knowing that he was willing to try. Willing to hope. Willing to take value of his life. Willing to WANT to be around for me, my Sister, his grandchildren.

It's still hard. Re-arranging my schedule at work has been blessedly easy due to having an amazingly good unit administrator but the VA is 35 miles each direction and it's a lot of driving.

He has 6 appointments scheduled so far for January and more will be coming.

The bright spot with all of that driving is that we get 2 hours of time with one another to chit-chat and shoot the shit, catch up on family business, and basically just love on one another.

I am getting to be the parent right now. Instead of it being really stressful anymore, I have found it joyous and such a deep blessing that I probably will label this past year with my Pops as some of the sweetest time we have ever spent with one another. I know it won't always be this easy and that it will be harder as we go on but right now, I'm just grateful for the tiny little miracles.

Peace and blessings to everyone in this thread going through the hard stuff with parents. Hug them hard and remember to be kind to yourself as well. <3

[TruTexan]

Medusa, great post by the way. I'm so glad your dad has you to help take care of him and that he is making the true effort to take better care of his health. I hope it all gets better for his health from today on. Good to see you posting here. Keep coming back.

[girl_dee]

I have never really thought about the fact that I act as a caregiver until recently, when a specialist we were seeing suggested I might look into getting a caregiver to help give me a break.... I have a 9 year old son with high functioning Autism Spectrum Disorder, ADHD, and an impulse control disorder.

Its a lot of work, and a whole lot of stress... I am just going to follow along for now.

i was hoping some that are taking care of young folks would chime in. Sometimes i don't think those who do give themselves credit. It's stressful caring for a healthy child, it must be completely overwhelming (however rewarding) taking care of a high needs child.

you get to feel tired and stressed out when it happens!

[girl_dee]

I just had some ideas Dee:
what if you talked with your mom and designated certain days she can come over and you two can play board games or card games together or regular dominoes? Maybe you can set up a few days a week that you can get your mom to start playing those games with you and in time, if she enjoys it, then you can ease her into going out to the local community center to play them with others her age group?

Or get her to volunteer with meals on wheels. If she doesn't drive she might be able to get someone in the area that does this, to pick her up and she can help prepare meals or even deliver food with someone, for those that need it.??
Just a couple Ideas that I hope might work for ya.


Thank you for the suggestions. i'm working on getting some sort of pattern going with her.

[girl_dee]

tonite my mom and i were invited to a friends birthday party. She really likes this lady and wanted to go. it was for 6:30.

At 3:30 she started stressing about when we were leaving. Then it started raining so she was stressing about that. Frantic even. My mother has been deathly afraid of bad weather since i was a kid, (like hide in the bathroom with a flashlight and a radio until it stops raining) .... we finally left and she was chattering about how bad things are, and the rain OMG if it doesn't stop raining and why did we go out and the restaraunt had nothing she wanted so she didn't eat, she wouldn't touch the napkin because she may get a rash, sooooo she just sat there not eating... and it was too cold and the people were too loud and the little kids were being mean to each other (being normal) and and and...

Then when we left she wanted to stop and get something to eat.

my poor mom just cannot relax, she jumps out of her skin for just about everything and at times she feels like a complete stranger.

i was a bit stressed out when we got there after all that but then i just let it go and said screw it and had a great time.

[Redsunflower]

i was a bit stressed out when we got there after all that but then i just let it go and said screw it and had a great time.



Well done for getting through all the stress stuff and managing to have a good time anyway, it's much easier said than done.
:-)

[JustLovelyJenn]

Has anyone every had to fight to get proper care for their loved one... whether in a home or a school? I fear this is the path I am headed down right now, and I am not sure how much of a fight its worth... Or how much of a fight I can handle.

My son is in 4th grade... he has severe behavior needs due to autism, adhd, and an impulse disorder... and I found out this last week that they are restraining him unneccessarily, and doing it improperly at that. I don't know how much of a fight this is going to be... and I am wondering if it will even be worth it, or if I should just find somewhere else for him to go to school...

[Redsunflower]

Has anyone every had to fight to get proper care for their loved one... whether in a home or a school? I fear this is the path I am headed down right now, and I am not sure how much of a fight its worth... Or how much of a fight I can handle.

My son is in 4th grade... he has severe behavior needs due to autism, adhd, and an impulse disorder... and I found out this last week that they are restraining him unneccessarily, and doing it improperly at that. I don't know how much of a fight this is going to be... and I am wondering if it will even be worth it, or if I should just find somewhere else for him to go to school...

Hi there JustLovelyJenn

So sorry to hear you're having a difficult time with your son's school. How difficult for you, and him. I'm not sure how much help I can be; I live in Britain and I'm guessing you're in the states. However, if you lived here, this is what would happen.

An educational psychologist would be involved who has a good understanding of the educational needs of children with adhd, asd and associated behavioural difficulties. They would co-ordinate a consistent approach, in consultation with yourself, and follow this up throughout your child's schooling. Does his school have one of those?

Failing that, you could go back to the psychologist that diagnosed him. If he's on meds you may have contact with that person anyway, and ask them to help by contacting the school.

If it's all too much and nobody is listening, in Britain you could contact a social worker to fight those battles for you.

It's all so stressful but will be so worth it once your son is more settled. Best of luck with it and let me know how you get on.

Rxx

[TruTexan]

I'm sorry about all that Jenn. I wish I had answers for you. I would contact maybe someone with the Disabilities dept in your state , maybe they can steer you in the right direction?

[Venus007]

Searching for a Medicaid bed in a facility that is rated at least above average to well above average for the HL's dad. It also has to be relatively close to where we live so it makes our daily trips easier.

Who would have thought finding a bed in a facility with the combination of moderately close by, quality care that takes Medicaid would be so difficult in a metropolitan area of 5.6 million people.

The clock is ticking on the rehab center. In 3 days his Medicare will be up for the short term rehab facility. They told us we had 60 more days on Monday then on Friday after 5pm told us he had to be out Wednesday or we have to pay $142.00 a day. (We can't afford that).

Considering how hard it is to find the elusive Medicaid bed, we should have started sooner, immediately even. Now we know I guess.

[TruTexan]

Sorry to hear of the troubles with finding a facility that works for your family, venus. I hope you find one.

[TruTexan]

Being a caregiver to my mom is stressful. Now my birth father is not in so hot a shape. He's got diabetes and he's got blood in his urine, an open sore on his foot he's got meds for thank goodness, and a 30% usage of only the upper part of his heart, and he's not been feeling well and is anemic. I worry about him, he lives with my 93 yr old grandmother...his mom. She gets around really well, but I just hope I'm not in for some more bad news about my dad. We've been trying to have a relationship the past 2.5 yrs now since I honestly didn't know much about him when I was a kid and only visited him for short time when I turned 21. I don't wanna lose my dad anytime soon and I hope the tests my dad is taking will give reassurance that what he is going through is nothing serious. He lives 5 hrs from me just south of Austin. I don't have funds to take a trip to go see him but I do call him often. Keep him in your prayers please. Thanks.

[Redsunflower]

Hugs to you Tru, I'll be keeping you and your dad in my thoughts.

Rxx

[TruTexan]

Mom is having carpal tunnel surgery on her left hand in Jan. 2014. She's been complaining for years about her left hand and wrist bothering her now it's gotten bad enough to do the surgery because it's bothering her in her sleep now. When she wakes up it's hurting and feeling numb and she can barely move it. So, the doc recommend surgery to stop the pain and hopefully with this new type surgery they do now, it will stop not only the pain but allow the nerve not to get pinched and cut off circulation. We also found out she's got rheumatoid arthritis in both hands now, they just aren't bad enough to take any meds for unless it's tylenol.
I myself need to go in a see someone about my left hand/wrist, it's been hurting me more since I injured it back in 04. Time to see the doctor and see if I need surgery done or if it's arthritis or both. It goes to tingles and hurts all the time and I lose circulation in it so time to go now. Maybe I too can get some relief from the pain.

Dad has been going to see his doctors for his issues. His foot is healing up nicely now since the doc grew a culture and was able to determine precisely which antibiotic to give him to heal him up. His kidney doctor is running tests on him now and we'll see what that entails at a later date. He's still due to see his cardiac doc. to run doppler tests on his legs to check for blockages. And still due to get his colonoscopy done. Not much I can do but wait for him to tell me what's going on.

I hope all the other caregivers and their family are doing well lately.
Merry Christmas to you all and Happy New Year!

[TruTexan]

Well today was mom's surgery for carpal tunnel, later today that is. I just got home and am now trying to relax. She is doing alright but we'll see tonight and tomorrow after the lidocaine wears off her hand. she's allergic to codeine so doc prescribed tramadol. I hope it helps her with the pain she may have. I"ve never had this surgery, although I probably need it done as well. She's out of commission using her left hand until stitches come out in 2 wks from now. Then we'll see what's going on with it. I don't know if she'll need hand therapy for strengthening. I just am glad it's over with and she's back home. She was so afraid today and I know it was hard on her emotionally because everytime she's had heart or artery surgery it's scared the babyjesus outta her. The doctor and I both reassured her it was a minor surgery using a twilight like drug called versed to put her to sleep. When he told her that the surgery was only 20 mins long and about the light anesthesia, she was at ease then. She woke up 30 mins later and was just fine, smiling and being all sentimental with me. Man, that just made her feel better. I"m glad she didn't wait to have the surgery, she needed it and I hope it works for her.

Dad is still seeing his doctors, his foot is finally on the mend. He fainted at the podiatrists office last week so they rushed him to the hospital and kept him for couple days doing tests trying to figure out why he fainted. They thought something was wrong with his kidneys but he says he's fine now.
He's home now, but I worry about him. He doesn't always tell me when things are bad for him, he thinks because I live 5 hrs away that he shouldn't tell me because there's nothing I can do for him. He has so many issues going on with his heart and arteries and his diabetes. I told him next time something is going on, he better tell me so I know and can at least talk to him on the phone before something really bad happens and I can't . My grandmother was the one that told me he was in the hospital so I just played it off and called his cell phone to see what he was up to, he finally told me after being there 2 days. SMH, and I'm just as stubborn as my old man is, and I wasn't even raised by him. LOL

I hope all the other caregivers out there are doing well and that their caregivees are also doing well. Have a great weekend one and all.

[TruTexan]

How are all of you caregivers doing lately? I haven't posted in a while either.
I'm dealing with things that are happening here with an old woman that is 86 and and has dementia or something going on, she's delusional and accusatory of me. I have become a target for her yelling and screaming at me for no reason, she thinks I"m doing all sorts of things. It's gotten worse in the last year. I have been dealing with this neighbor like this for 2 years now and finally the new manager that's been here since last year is trying to get the woman's family to do something about it. She's about to get evicted because she's harrassing me and I feel bad about it but I have to take care of my own sanity. She's affecting my ptsd, anxiety goes through the roof and I end up taking full dosings of my anxiety meds just to calm down some. I lose sleep over all this and it's just getting worse for her and for me. I told my apt. manager today either something is done to stop her or I"m moving out. I don't know what else to do. I"ve been asked to give my manager 2 months so I agreed to it. I told her I have no place to move to but if I have to, I WILL MOVE OUT because I can't live like this anymore. I just feel like calling my younger sister and telling her I need to move on with my life and for her to come talk mom into moving where she is so I can move on. I feel bad about all this but it's just getting to me. The stress and the worries and the bullshit dealing with this neighbor. I"m in therapy and dealing with some issues I need to deal with but this stuff with this lady is interfering with my life. I feel like putting my head in a wall or pulling my hair out....I won't do that,I'm just venting. Adult protective services was called about her last year and they say they cannot make her go to a nursing home to get the help she needs, that they can't intervene because she's not harming herself or in harms way.
I just wish her family would get off their asses and take care of her better and move her to a nursing home where she needs to be. It's ripping me up emotionally and mentally to deal with her almost everyday she sees me outside, and I feel trapped here, stuck in my apt so I don't have to deal with her. I just wanna scream my head off !
Sorry for the vent, but I just needed to. thanks .

[TruTexan]

My father lives 5 hrs away with my grandmother just outside of Austin and hour. He's not in the best of health and has been battling a foot infection. So far, his toe got infected and wouldn't heal, then they tried the chamber to flood him with oxygen to stop the infection, that didn't work, and they used a vacuum on his foot to draw it out and use honey to try and get the bacteria to go to the honey and come out of his toe so the vacuum could suck it out. That didn't work. He got 3 more places on his toe that were more infected so they did surgery on it and removed his big toe all the way down to the large toe knuckle.
The surgery was Friday, on Sat the wound care nurse said it looked good, on Sunday dad started running a fever and the toe didnt' look like it was healing and was warm to touch. On Monday, today, he saw the podiatrist and he was running a fever the surgery site was healing and had an infection in it again. They admitted him to the hospital there in Austin. He isn't in pain or anything, he's diabetic and has severe neuropathy in his feet so he doesn't feel pain. I'm worried the will cut of part of his foot, then that will get infected and then they will go all the way up to just below his knee. I sure hope what they are doing will heal his infection . I would hate for my dad to lose his leg from all this. It's really weighing hard on my mind. I'm concerned for him. His diabetes is stopping him from healing and I don't think the first surgery got all of the infection because it was in his bones in his toe. Worry worry worry is all I can do. This is a procedure that can change my dad's life forever and put him in a wheel chair. If he loses part of his leg, I hope medicare will pay for a prostetic leg for him to use to walk with so he has he ability to walk again. UGH so frustrated and so frustrating for him I'm sure. Please keep James in your prayers that he heals quickly and doesn't lose a limb from all this. Thanks.

[TruTexan]

On July 20th just after midnight,my father lost his battle with diabetes and congestive heart failure. I was with him by his side on the evening shift in hospice care. He passed peacefully and I know he is in a much better place.
He decided long ago that he wanted to donate his body the the UT Medical Science Center in Houston which will return his ashes in a couple years. His memorial was on Aug. 2nd, where beloved church members, close friends and family members attended.

After having endured the stress of losing my father, I was able to return home 3wks later only to find my mother has been having irregular rapid heart palpitations and rapid increases in blood pressure. She was taken to the hospital and given a chemical stress test to look for more blockages as she is prone to atherosclerosis ...aka hardening of the arteries. They couldn't find anything that would have caused her symptoms of left shoulder pain, left sided throat pain, and the rapid increases in blood pressure and heart palpitations. This happened while I was gone with my father. A couple days after I returned home, it happened to my mother again. Once again she was taken to a different hospital in Tyler where they still couldn't find anything wrong to cause this to happen. We have urged the heart doctors office to call me as soon as they get a cancellation so my mother can get in to see her cardiologist sooner than Aug. 29th for her yearly appt.
After the stress I endured being with my father , I've come home to more stress about my mother. I don't think I can handle one more ounce of stress at this time. I"ve reached my limit and have begun to shut down emotionally.
I guess I'm trying to protect myself from the fears of losing my mother as well if something happens to her. She lives in a rural county area where the bridge is out that the ambulance drivers have used to get to the county roads. While mom was on the phone with 911. I beat all the drivers to her location and found out that the ambulance had gone to the bridge to get there and couldn't and was re-routed to the county roads back way to her location and became lost. It took over half an hour for them to arrive and finally get there to her. I'm so pissed at the county for letting this bridge issue get put off for replace and rebuild because what would have happened to my mom if this had been a heart attack ? I'm calling my state senators office to try and get something done about the bridge issue, it's not supposed to be rebuilt until sometime in 2017. That's just too long and not only my mother elderly that lives in that area but there was another incident where a 50 ish man was thrown from a horse and needed an ambulance and they couldn't get there in time to treat his head wound which may have saved his life. There are other older folks that live in that area that I am concerned about as well as children. I'm just flat out angry about the bridge issue. I just hope that I can get something done about it. I hear ya.....good luck with that right? ......well a person can try and should try and that I will do.

I hope each of you caregivers' lives has settled down with less stress, but for me, it seems when it rains ....it pours. I need a dry spell for a while.

Justy

[TruTexan]

Lately in the past several months, it's been so stressful just to even be around my mom for me. I just can't handle the amount of yelling, griping, bitching, screaming at me that she does. I lost my control today with her and yelled back to just get her to stop it. This went on for hours today, I couldn't do anything right and she's blaming me for things that she's chosen to do and not allow me to help her with, that's my fault how? OMG I'm so broken inside it hurts me to no end to be screamed blamed and yelled at for things that aren't in my control or for things I don't do for her because she won't let me. My mom is miserable where she lives, she wants things better but she will not do the things necessary to make that happen, like move to my sisters home in TN where she will be well taken care of. Instead she takes her anger out on me and has been for several months now. I know how the old saying that says you hurt the ones you love the most that are closest to you, but that's the shit that has to stop. I can't take anymore, my ptsd is at an all time high, my anxiety is running amock and I'm having to take double the pills for anxiety to keep mine under control. I've talk to my therapist yesterday about all this and about how guilty I feel that I need to distance myself from my mother (she's toxic to me ). I feel that it is my responsibility to help her when she needs help and when I do things for her, all I get is bitched screamed yelled at about doing it the wrong way. I feel so empty inside towards my mom now, I just don't even want to be around her, that's how broken I feel and I feel guilty about it so much that it's causing my depression ptsd and anxiety issues to rear their ugly heads too, along with how my mom talks to me and treats me. I told mom today that I am done, I won't be yelled at anymore, I won't tolerate her behavior towards me and I'm tired of coming over and helping her and all I get is bad attitude towards me, the yelling, screaming blah blah blah BS that i go through that I was done. I can't take anymore. I'm not going to do this with her anymore.
Texted my younger sister in TN and told her whats been going on, she won't get the text until she leaves home for work tomorrow, no reception in her home to get it. She's going to be pissed off at me for sure, but oh fucking well. This is what I have to do for me to take care of me and distance myself from someone who's acting like a mad woman that's losing her mind.
She's like jekyll and hyde, nice one minute then here comes the craziness and drama. UGH I feel so broken and so guilty for needing to just exit this entire life of taking care of my mom. I sure hope therapy will help me feel better about what I need to do for me to take care of my own needs first.
UGH UGH UGH TRILLLION UGHS.

[TruTexan]

Just bumping the thread tonight.

[Cailin]

Caregiving in any manner is hard. I'm not a caregiver for my family; I work through an agency, so I am contracted out to help families with their loved ones.

It can be so difficult some days, especially ones with dementia/Alzheimer's. The hours are long, you don't get paid overtime, and you don't get paid time off, no medical insurance etc. (not all agencies are like that, but most) so when you do this job, you do it for the reward of caring for someone, and not much more.

Ive never known my client in any manner other than when I met him, but I know that it wears down his wife. I think in some ways it's harder for family to be the caregiver, because you remember what they were like before, and the emotional pain that comes with seeing them deteriorate before your eyes. Not to mention the stress of moving your schedule around, and for some even having to quit their jobs.


it's not any easy task, but sometimes it's good to get a paid caregiver through an agency, just so that you can get some 'away time' to feel like you're not losing your mind.

[Jedi]

I give care to my disabled roommate. It is a lot to handle but the reward of helping her stay independent is awesome. I can't describe it. It takes a lot out of me lately, as the roommate I shared care with had a double bypass.

It just so happened that she came home with a dead chair and me on very little sleep. I kinda set her up at the tv and went back to crash. This person is not my family. She was just there for me in a really bad time in my life and when no one else wanted me around she talked to me. I don't feel as if I "owe" her anything. It just makes me feel good to be helpful.

The stress it brings is hard. Her problems are usually serious. Like falling on the ground serious. I've had to pick her up off the sidewalk because she tried to walk the dog without having her seat belt fastened. I should tell you....she has MS and is paralyzed and confined to a power chair.

It is sad to watch her deteriorate as progressive diseases will usually end up doing. My hat is off to all of you who do this as a profession. You are truly wonderful hearts.

[Cailin]

Today, like every day, I handed my client his pills- one by one- so that he could take them with water

him:"I sure wish I knew what all these pills were for"

me: "I have no idea. I think some are vitamins, for your heart and for you brain"

him:"well those brain pills sure aren't working"

could not stop laughing.

[Kelt]

Just thought I'd sign myself into this thread, it looks like I'm going to be involved in this world to some degree or other for a while.

I'm leaving in the morning for what will be my second trip to deal with the aftermath of my fathers stroke. It's a long commute, a seven hour drive each way, to go see what can best be done about a bad situation. It's early days and all pretty surreal at this point. My folks are in their eighties and I am the only child, they have no friends or community, and it seems my mother may be failing as well. I had to put my father into skilled nursing mid-feb and my mothers behavior in the facility has led the management to suggest I have her tested for dementia. I made her an appointment with her regular Dr for Monday and will take her to it as I don't think she'd find the place on her own.

I'm incredibly thankful that they have resources (financially) to deal with all of this, but there is much more to it than that. I have to find housing for my mother either way. She's okay for a week or two if I set up everything in advance and she only has to get back and forth to the facility my father is in.

She doesn't seem to do much on her own so I have spent the day batch cooking healthy food to take over and stock her freezer, loaded the car with empty boxes to put in the garage for her eventual packing, and made appointments to get things like taxes, income streams, and possible housing options lined up.

I'm in the deep end of the pool and don't really know what to do other than everything. My plan at this point is to try to establish some kind of routine, one week there, two at home (to deal with my own stuff) and see if it works. I know it will get interrupted and changed with circumstances but just need to pretend to myself that I've got some kind of handle on things. For this next week while I am there I will just focus on keeping moving and doing the best I can figure out how to do.

Thanks for listening.

[cricket26]

i have a mother who is disabled, and needs help going to drs appointments, a daughter who lives with me who is going thru a divorce and it is a very emotional process that put her in the hospital for a short time, i have a very demanding job that does not allow much time off (and the emergencies never happen on your time off anyway right?) my home and my car are in constant need of repair or maintenance....i am feeling overwhelmed....my niece is here for spring break and we are going to have some fun :)

[Kätzchen]

Although my mother lives hundreds of miles from me, we are each other's life line. A few years ago, she slipped in icy concrete at work, which set off a firestorm of health events, which brought out undiscovered physical conditions, which morphed into cancer trajectories. Simultaneously, I went into spider monkey mode in matters of support for my mother.

She is flying in next week for a medical consult, which we hope puts an end to the relentless paperwork generated by the original event at work which turned her life upside down. I am taking that day off to escort her to her crucial medical appointment and to provide what support I can give.

She has outlived several near death experiences associated with the original event. Her mind is sharp. Her ability to out wit problematic conditions inspires me and teaches me critical skills in how to solve problems and problem solve outcomes which have intended or unintended consequences.

I will savor our time together next week.

Sending lots of healing energy today,
:bouquet:

[Kelt]

I'm back from my week+ in the land of weird. Surreal doesn't even to begin to describe some of what is going on, I'll have to come back over the next couple of days and vent a bit, I'm glad this thread is here, I'm gonna be a new regular.

Everyday seems to be a new test of how many hats can I wear at once. A sample day: waking up to discover my mother has decided the house should be 90 degrees : setting up the special hearing impaired phone that I ordered and had drop shipped only to discover she doesn't plan on using phones anymore ::blink:- touring two more nursing homes to make sure my father is in the best : finding more clothes for him and learning how to use the heat press in laundry for labeling : having my ass pleasantly kissed by a "wealth management" firm that is doing literally nothing for us (at $55k per year in fees just to be on 'standby') and assessing whether or not I'm up for this challenge myself : straight back over to the nursing home to work with PT on customizing a wheelchair : whisking mother to her Dr appointment where she forgot where she was or why only to have the Dr say she's fine to live by herself based on a questionnaire :blink: of course as we left she wanted to know who the nice man was :doh: : off to the accountant to sign papers that aren't ready : discovering the park brake on her car decided to seize in the parking lot >> REAALLY?? : get that towed and another car : to head back to the nursing home to learn about swallowing issues in stroke patients from the speech therapist : back to mothers house to put together a tv because hers has been broken for a month only to have her tell me she won't watch it even though she just asked me to "fix" (replace) it that morning. :blink:.................etc............etc........ ... Of course then she only sleeps about 4 hours a night because throughout the day she 'nods-off' every half hour and gets her sleep then, and when mother's awake...yep, the 90 degree thing.

I'm pretty sure there was more and that was only one day. After a week of those days I'm pretty much ready for the booby-hatch (her term) myself.

And of course at the end of all this the return 7 hour drive at the end where I come home to find the yard guy bailed again and I have no food. :blink:

Me tired... :thud:



Oh yeah, :cat: hates me for being gone.

[TruTexan]

I hear ya Kelt. Sorry things aren't going so smoothly trying to take care of your parents. If your mom is having issues with dementia a bit, have you thought about putting both your parents at the same facility? Often times they will allow married couples to move into a room together. Honestly, with your mom's issue with memory, I'd be afraid to leave her alone in the house, let alone drive a car to the store, something could happen to her, as I'm sure you are aware. I know it's difficult caring for parents, I care for my mom. She gets around really good on her own, but there are a lot of things she just can't do anymore and things I must do to help her. I handle everything from paperwork, to making her appts with doctors and taking her there, to making sure the house is repaired, the car is repaired, etc. Things I cannot do, I get someone else to fix them and have to contact my younger sister for financial help to get them repaired. My younger sister lives out of state in TN and wants my mom to move there with her so she's better cared for, but mom won't move there cause she don't like the hills and don't like the snow they get and blah blah blah whatever else excuse she can come up with. It's actually been a few yrs now that I've moved back here to help my mom. And it's cost me friendships and a love life as well because there aren't any gays here in redneckville small town in Tx. The few friends I do have all live in Austin or that area, so I don't see them hardly at all. I get lonely and bored here as I am disabled myself. I often wish my mom would move to TN to be with or nearer my younger sister so that I can have a life of my own and find a gf. I haven't had a partner in yrs now, long time. I'm ready for someone to be in my life though. I miss that part of my life. AS much as I love my mom, I want MY life back and let my younger sister who is married take care of mom and see how hard it is on me for while. She gets all snippity with me and acts like it's supposed to be easy to do but it isn't when mom yells and screams at me and acts like a child at times over stupid stuff and over her life being so hard. I have ptsd, anxiety, and severe depression and she affects me in a bad way when she acts like that. Drives me nuts. I've had to go back to therapy just to learn how to not let it get to me and cause me more issues with my own stuff. It's helped but I still get upset when it happens and takes me days to overcome the rattling it causes me.
I just wanted you to know, I understand what you're going through with the parents. Keep posting, someone is reading, I know I read often here and don't reply, but felt like I should with what you're dealing with. Keep on keeping on Kelt. Hang in there.

[Blade]

I have had a hand in caring for my parents and their issues the past few years. They are in their 70's and though they are still mobile and mostly can do for themselves they do depend on me to help them as needed.

Daddy has in the past 5 years had heart surgery, eyelid surgery, hernia surgery, and most recently cancer treatments. Mom does good at getting him to his appts but she wants me to go with them when he has to have things done at the VA in Charleston.

Moma has had surgery on her wrist and hand from a fall 10 years ago that she didn't have taken care of then. She is right handed and this has been a real challenge for her to learn to use her left. It's been quite a challenge to keep her happy and fed, as Daddy does nothing for her. It's hard juggling, work never knowing how many hours I will work or what time I will get off and their supper schedule between 5-6 and the other things she needs help with.

Thankfully my roomie has helped with getting them supper and helping Mom write out her bills and things like that. I know as the years move on they will require a lot more of my time. I know I am very fortunate that they can still do many things for themselves but I see those things dwindling a little at the time each year.

KUDO's to those of you taking care of parents and siblings it takes a lot out of you and from you, but I always think you are better for it in the end.

[Kätzchen]

My heart goes out to you.

After reading your post this morning on the way the 'Wealth Management' agents were fly-fishing your current situation, I couldn't help but think that your parents are so fortunate to have you handling and overseeing their care and managing their collective financial resources.

What you're going through is somewhat the proverbial mountain I will find myself scaling. My mother and I think quite a bit alike on most matters in life and unlike your situation, where I am presuming you are the sole child of your parents life, I am 2nd eldest in my parents' brood of children, with siblings that would not watch out for my mother's health and welfare. I'm the proverbial loaded shot-gun, my mother keeps by the 'door.' And my brothers and sister know this, as well as other certain people (doctors, wealth mgmt, etc) have come to realize, during the tiring process of staring down and eliminating threats or potential threats, that can and sometimes do, affect my mother's slice of life.

I hope you are able to cultivate and set aside time just to think, rest, and find solace out in nature, so that your mind and soul get the necessary reprieve to make the best decisions possible, each and every day, during this extremely challenging time.

Happy Sunday, Kelt.

:bouquet:

[princessbelle]

I'm back from my week+ in the land of weird. Surreal doesn't even to begin to describe some of what is going on, I'll have to come back over the next couple of days and vent a bit, I'm glad this thread is here, I'm gonna be a new regular.

Everyday seems to be a new test of how many hats can I wear at once. A sample day: waking up to discover my mother has decided the house should be 90 degrees : setting up the special hearing impaired phone that I ordered and had drop shipped only to discover she doesn't plan on using phones anymore ::blink:- touring two more nursing homes to make sure my father is in the best : finding more clothes for him and learning how to use the heat press in laundry for labeling : having my ass pleasantly kissed by a "wealth management" firm that is doing literally nothing for us (at $55k per year in fees just to be on 'standby') and assessing whether or not I'm up for this challenge myself : straight back over to the nursing home to work with PT on customizing a wheelchair : whisking mother to her Dr appointment where she forgot where she was or why only to have the Dr say she's fine to live by herself based on a questionnaire :blink: of course as we left she wanted to know who the nice man was :doh: : off to the accountant to sign papers that aren't ready : discovering the park brake on her car decided to seize in the parking lot >> REAALLY?? : get that towed and another car : to head back to the nursing home to learn about swallowing issues in stroke patients from the speech therapist : back to mothers house to put together a tv because hers has been broken for a month only to have her tell me she won't watch it even though she just asked me to "fix" (replace) it that morning. :blink:.................etc............etc........ ... Of course then she only sleeps about 4 hours a night because throughout the day she 'nods-off' every half hour and gets her sleep then, and when mother's awake...yep, the 90 degree thing.

I'm pretty sure there was more and that was only one day. After a week of those days I'm pretty much ready for the booby-hatch (her term) myself.

And of course at the end of all this the return 7 hour drive at the end where I come home to find the yard guy bailed again and I have no food. :blink:

Me tired... :thud:



Oh yeah, :cat: hates me for being gone.

Wow Kelt. I feel for you. There is a LOT on your plate!!!! I'm guessing you are alone in this and that is not good. If you have no siblings, or at least none that will help, you are not alone. My brother passed a few years ago and this left me alone to care for my mom. I have since moved in with her because it made it way easier to care for her than from afar. But, i get that most people don't have that option. We, thankfully, lived less than a mile from each other so it was an easy option for me.

I wonder if you have (and please forgive me if this is redundant or too invasive) reached out to others...as in ...does their insurance company have Case Managers, Social Workers...do they qualify for Home Health and so on. There is a huge amount of help out there, problem is most people don't know where to look for it. Another problem is people may think they don't qualify for it, but almost all qualify for some.

I am a Registered Nurse and Case Manager and work with the elderly on a daily basis. Please reach out to someone, and feel free to reach out to me if you want to, you gotta get some help.

And again, you may have already done this but you should not be facing this along. No one should. Please know i am posting this with empathy and compassion.

In the mean time, i'll remember you in my prayers and send you white light and positive energy. We all have these "things" to deal with. The secret in walking the easiest and BEST path, is knowing our options....

[lillith]

***Trigger Warning - Topics of emotional abuse, violence, and healing are below***

I was my mom's wild child. I am her youngest and the only one she raised until a teenager (this part is an super long story). I came back home when I was 28 and my son was four years old. I had no intention of sticking around that long. Well, 12 years later, here I sit. I have been to sole caretaker of my mother for the last four years. I have a brother (12 years older) and a sister (seven years older). Neither of which could take the time to come over and hang out with my mom, so I could take care of me. Neither of them seemed to care about what was happening with my mom. I would contact my brother, who only lives three miles from us, every time we ended up in the hospital. The response I often encountered was that it was my fault because I wasn't taking good enough care of her. He would yell at me and tear me apart. I endured this because he was her son, and I didn't want him to leave her, too. My sister left us ten years ago because of me, or so my mom says.

It seems that a lot of it is my fault, but I have done everything I could do that she would allow me to do. I tried to get her in home physical therapy, which she would kick out the physical therapist and never do any of the exercises. I tried to get a nurse to come over and be with her, so I could go just have a minute to breath. She would kick the nurse out, too, and I often found myself walking the people downstairs and apologizing profusely. She would yell at me that I don't need any time for me because she didn't take the time when she was raising me. I can only understand the frustration and fear my mom felt in marginal ways, but I tried to connect with her. I tried to make things better for her.

She has been in and out of nursing homes and the hospital, but this last jaunt into the hospital and the nursing home broke me. She has a history of leaving without doctor's consent, so when she called me two weeks ago to come and get her, I told her no. It broke my heart, and I sit here and cry now because of what has resulted from that one two lettered word. It was then that everything of the last fours years, honestly my whole life, came tumbling down out of my head and heart into my mouth. It was in those few minutes that everything I could never voice because I couldn't ever admit to myself was true. She threatened me through intimidation, "You better come get me." I still said no. She threatened me through guilt, "If you don't come get me, I'll call your brother!" I told her to go ahead and do that. Then she started to cry, "You don't love me." I said that I did and that is why I am saying no because I cannot take care of her the way she needs and that was me showing her that I loved her. She got angry again and told me that she was moving out. I said that is fine and that all of her things will be packed before she could get here. She hung up on me. I think I started to grieve then. I think in those quick moments I realized I just lost my mom because I figured it all out. I was the adult child of an emotional abuser, and I made the conscious choice to no longer be that child. I lost my will and desire to take care of her. I lost the guilt and shame of not being enough.

She called back later and tried to negotiate. She suggested that I move my son out of his room, so she could be in there. Before, she was in the living room. I laughed. I asked her who on earth asks their child to put them above his or her own child? She again got angry and hung up. It got to the point that I didn't want to answer my phone when she was calling. I felt like a horrible daughter and human being.

Two Fridays ago, I packed all of her things and she came with my brother and his wife to get them. It did not go well. My brother got violent with me and my son stepped in to defend me. My mom told me it was my fault that he put his hand on me.

It has been over a week since she has been gone. I have thoroughly cleaned the house, blessed it, but I still cry. I have missed worked and I keep looking for someone to tell me that I have been wrong in all of this because that is what my old tapes tell me I should be hearing. I wish I missed her. I feel bad for not feeling bad enough. I feel like a dick because I know that my life will better without all of the drama and heartache.

[Kelt]

It's really good to have this thread here. Princessbelle, you are right I am doing everything myself, I don't have any family to help as an only child. Part of the weirdness is that my parents don't seem like family to me either. They pushed me away long ago as unacceptable. They are old people I know who have no one else. The phone call I got from my mother about this stroke was the first time she's called me in twenty-six years. I have seen them every few years and spoken briefly on the phone with them (my instigation) every few months, I don't really know why. My father has always been psychologically abusive to both my mother and me. I got out, and have always felt protective of her even though she chose to not interact with me lest it upset him.

It's a long complicated story that is probably just like a hundred others, so the details don't matter that much. I do need to hire others but right now in this initial period of what I have learned is the "Medicare 100" first days, it feels like I don't have time to find the right people to hire. I know it will work out in the long run, but it's crunch time. I think what I am doing would be classed as geriatric manager of some sort. My father also has cancer (he was taken off his coumadin (warfarin) for surgery and that's what stroked him out) so I am trying to set up a transition to Medicare hospice + gap insurance to cover medical expenses when the 100 days are over. Room and board will be self pay at around $9k per month.

I am taking time for myself, that's part of my one on; two off schedule. I'll burn out quick if I don't. I am taking food with me so that I will eat healthy and so will my mother by example and the fact she doesn't want to cook. I do the best I can to get sleep and have no plans to move anywhere. The weeks that I am home I am planning and working on this but at least I can concentrate and take breaks in the flow. I will make sure they are both safe and comfortable and that their assets are protected.

I came to realize a few years ago that with my father there would never be a reconciliation, nor a cathartic clash of titans, as it had been in my head for so long. It was deflating and also hurt but I got over it. I am now coming to realize that there will never be a hallmark relationship with my mother in the aftermath of his death. That is kind of sinking in now along with the fact that she simply doesn't care. It's too late, the woman I thought I knew so many years ago isn't really in there anymore.

I've offered my mother everything from occasional part time to full time live in help and she says it would be too invasive. Yet she seems amenable to looking at assisted living or an "independent-retirement" apartment with supplemental help. Go figure. I know she is in a strange place emotionally where she can't quite grieve her husband of 60 years because technically he isn't dead. I've suggested support groups for either caregivers or widows (to be?). She has been cut off and isolated for a long time, and hearing loss isn't helping. She is timid and well trained to not think of herself. I know she can't live alone and the reason I took her to a Dr for dementia evaluation was so that I could figure out if I should get her something in regular assisted living or if I should get her into something that could provide memory care. They seem to be divided and I don't want to set her up to be in a place where she might make friends only to have it taken away because that place may not "do" memory problems. I also understand that there are medications that can help if it's caught early.

For now I only leave her for two weeks and make sure she has a full tank of gas, food, and a bunch of cash if she needs anything. There isn't much else I can do other than work as fast as I can to get her in a better situation and my next trip over I am setting appointments for just that.

Oy vey. Ramble, ramble. I guess that's what this thread is for.

If anyone actually made it through this, congratulations! You have a longer attention span than I do, I've written this down over three sessions, lol. Here's your prize. :present:

:cheesy:

[TruTexan]

Kelt, I would suggest that you talk to those at the Assisted Living Place to see if your mother can actually function there with medications and if she cannot, will she have to move to a different facility? I live in an all adult retirement and disabled community for seniors, as I am young but disabled I am allowed to live here and it helps me afford a place to live. I had some problems with an elderly person and her dementia while living here and it became a nightmare for me to deal with. They ended up forcing the family to do something about it and moved her out because it started to cause problems with my own peace and tranquility the more the woman's disease progressed. I know it affects people differently, but I would suggest you speak to the Assisted Living Place before just placing her there. They may not be equipped to handle someone in her condition should her condition deteriorate more. I know there is medication she can take that may help, but is she willing to take it EVERYDAY? is the issue as well. The woman where I live wouldn't and she became aggressive and agitated more and more everyday, driving me nuts til they made her move out to a nursing home equipped to deal with her. It's not only your mom that you need to consider about where she lives, but others that may have to deal with her daily as well. Just something for you to think about.

[MsTinkerbelly]

For most of my adult life i took care of my folks financial and government paperwork, because one day they just looked at me and said " we don't get this anymore".

My mom fell one Christmas eve and broke her hip in the CVS parking lot, which required surgery and extensive rehab which required more decisions and every day visits and feeding my step-father. Then, my step-father became ill with kidney disease and heart disease...i took him to alll of his appointments including the appointments to put in his shunt for dialysis...then he had a massive heart attack, and my mom was forced to terminate life support.

My mom also had kidney disease which she told no one about, because if you don't think about it, it will all go away...until she wound up in the hospital with an emergncy shunt in her neck, and dialysis three times a week.

All of this occured as i began to become ill, and wound up with a triple by-pass! We began converting my mom's garage into a suite (she had a two bedroom house and we have a daughter) for my wife and i, and we moved in to care for my mom, who had quickly begun to go downhill...during all of this, my loving wife took care of both of us, got us moved, and began to work from
home.

My sister, ah my sister.

I think during the last 2 years of my Mom's life, my sister watched Mom for ONE DAY, and took her to dialysis ONE TIME when i had the flu. When she was in the hospital, full of fluid in her lungs and barely breathing (every couple of weeks) she took reports over the phone, and visited kind of hit and miss. Having a sibling certainly does not guarantee that you get support...something that was hard for me to take.

I worked full-time during all of this...my wife changed her schedule to work from home to make sure my Mom was safe and cared for...you know who suffered through all of this? My daughter! I had no time for my daughter, and for several years she was the one who got short changed the most.

I would gadly do it all again if it meant i had my mother back...but i have to say that was the most stress i have ever endured.

Do the best you can to take it one day at a time...and to just stop and breathe once in awhile.

[Galahad]

Alzheimer medication helps my mom. If we had the funds I would have put her in a memory care home early. The best ones have so many stimulating activities and start at the low end of care to the end of the disease. There are many of them now. Starting early could make a difference.

[princessbelle]

Here are a few places that may be a help for those of us taking care of our parents and need a place to start.

As i said earlier, sometimes it's just knowing who to reach out to...

First, Office of aging.
I didn't put up a link because you need to look in your city/county. So, type that in first then the words office of aging. They have tons of resources available and most are free. They even have catalogs of free or nearly free help in your local area, from low cost dentist to sitters to help for hearing impaired. This is the "go to" place for financial assistance as well. Including meals on wheels (for meals delivered to the home daily), food stamps, etc.

Check into their insurance. If they have a supplemental insurance plan such as Humana or Blue Cross or Mutual of Omaha or any of those, give them a call and tell them the situation. Ask them for help. Sometimes they have case workers, social workers, doctors, nurses that can come to the rescue and even come to the house, monthly, weekly to assist with the care.

SSI directly in your town...call and set up a meeting. Take all of their earned income for the previous year and see what they qualify for. Sometimes, you may be surprised...pleasantly.

If your loved one is home bound, they could qualify for home care...talk to their doctor. Do they need help with medication compliance, therapy, ect. And if so, you can usually get assistance with bathing. Again, they must be home bound and this is usually short term.

Need help with cost of medication for your parents? Check out this site...

http://www.needymeds.org/index.htm

Type in the name of a medication and it will bring up a list of places to apply for low cost and often free medications. You will have to show proof of income, etc. But, it's worth it.

I'll post more later. There is help out there. Hang in there everyone..we are all in this together.

[Kelt]

Here are a few places that may be a help for those of us taking care of our parents and need a place to start.

As i said earlier, sometimes it's just knowing who to reach out to...

First, Office of aging.
I didn't put up a link because you need to look in your city/county. So, type that in first then the words office of aging. They have tons of resources available and most are free. They even have catalogs of free or nearly free help in your local area, from low cost dentist to sitters to help for hearing impaired. This is the "go to" place for financial assistance as well. Including meals on wheels (for meals delivered to the home daily), food stamps, etc.

Check into their insurance. If they have a supplemental insurance plan such as Humana or Blue Cross or Mutual of Omaha or any of those, give them a call and tell them the situation. Ask them for help. Sometimes they have case workers, social workers, doctors, nurses that can come to the rescue and even come to the house, monthly, weekly to assist with the care.

SSI directly in your town...call and set up a meeting. Take all of their earned income for the previous year and see what they qualify for. Sometimes, you may be surprised...pleasantly.

If your loved one is home bound, they could qualify for home care...talk to their doctor. Do they need help with medication compliance, therapy, ect. And if so, you can usually get assistance with bathing. Again, they must be home bound and this is usually short term.

Need help with cost of medication for your parents? Check out this site...

http://www.needymeds.org/index.htm

Type in the name of a medication and it will bring up a list of places to apply for low cost and often free medications. You will have to show proof of income, etc. But, it's worth it.

I'll post more later. There is help out there. Hang in there everyone..we are all in this together.

This is a great list, thank you so much for posting it. I have used a few so far, and some of this will be size of town related (as I am finding) the aging catalog is quite good, though their local state office comes up a bit short. They live in a town of 75k so there is a lot less available than a city of a million.

I have spoken to both her Dr (little to no help) and also the social worker at the nursing home who has given me some contacts. Some of those have panned out and some haven't, I'm going to contact the social worker at the cancer treatment center my father was going to also. I do get a bit tangled up because, of course, nobody is available right now and I end up leaving messages all over town and am always doing something else when they call back. That just is what it is.

One thing I am specifically looking for right away is some sort of geriatric general MD for my mother. Sort of like a pediatrician only the other way 'round. It seems that it isn't really a popular specialty. At the nursing home there is a practice of four Drs that covers it and the other facilities and the social worker told me I could use them for my mother also. When I called them though it turns out they only see patients who are in a nursing facility and the umbrella group they are in only covers family practice and pediatricians. :confused:

I want to find a Dr for my mother who will take early stage dementia as a serious possibility (unlike her current Dr) and run some specific tests. It was other medical professionals who noticed her symptoms and told me about this. I have talked to her about it and she agrees that she wants to pursue it so that if there is a problem she can get medication, and if there isn't she will buckle down on making better lifestyle choices around food, sleep, etc, or we can put her somewhere that those things are monitored for her.

If anyone knows of a specific terminology I can search, or ideas of where I can find a geriatric MD, I'd be most appreciative.

[clay]

google "gerontologist" Kelt!

[princessbelle]

This is a great list, thank you so much for posting it. I have used a few so far, and some of this will be size of town related (as I am finding) the aging catalog is quite good, though their local state office comes up a bit short. They live in a town of 75k so there is a lot less available than a city of a million.

I have spoken to both her Dr (little to no help) and also the social worker at the nursing home who has given me some contacts. Some of those have panned out and some haven't, I'm going to contact the social worker at the cancer treatment center my father was going to also. I do get a bit tangled up because, of course, nobody is available right now and I end up leaving messages all over town and am always doing something else when they call back. That just is what it is.

One thing I am specifically looking for right away is some sort of geriatric general MD for my mother. Sort of like a pediatrician only the other way 'round. It seems that it isn't really a popular specialty. At the nursing home there is a practice of four Drs that covers it and the other facilities and the social worker told me I could use them for my mother also. When I called them though it turns out they only see patients who are in a nursing facility and the umbrella group they are in only covers family practice and pediatricians. :confused:

I want to find a Dr for my mother who will take early stage dementia as a serious possibility (unlike her current Dr) and run some specific tests. It was other medical professionals who noticed her symptoms and told me about this. I have talked to her about it and she agrees that she wants to pursue it so that if there is a problem she can get medication, and if there isn't she will buckle down on making better lifestyle choices around food, sleep, etc, or we can put her somewhere that those things are monitored for her.

If anyone knows of a specific terminology I can search, or ideas of where I can find a geriatric MD, I'd be most appreciative.

You are exactly right on the terminology of "Geriatric MD". However, know they are few and far between, especially in small towns. A lot of them are not in general practice and instead see our geriatric population only in the nursing homes, assisted living facilities, etc. But, they are out there.

I would suggest...call her insurance company (still unclear if she has supplemental insurance) tell them you want a Geriatric MD and her zip code. They should tell you who is available and who is accepting new patients.

If that doesn't pan out, my next suggestion would be to seek an internal medicine physician. These docs generally know their stuff and are also used to working with dementia type diagnosis. Also, it may be prudent to get her a psych eval. Not sure if she would be agreeable, but if she is i believe it would be a possibly good option. They work with dementia as well and i would be willing to bet (reading your description of the circumstances) that she may be dealing with some depression.

If she does not have supplemental insurance then call her Primary Care Doc and tell them you want a referral for the above. You shouldn't have to do all this leg work yourself. The squeaky wheel gets oiled ya know? Make a ton of phone calls..someone out there will listen...i just know it!! :)

[TruTexan]

Hey Kelt,
I use the Department of Aging and Disability Services for things I need help with for my mom such as assistance and referrals. Try googling that they may know of some doctors in your mom's area that specialize or treat dementia patients? Worth a shot.

Sorry you're having to end up doing so much leg work for a small town. i do it for my mom and the population there is less than 4,000. Yep it's not a typo. LOL I live in a smaller town just up the road from her and run myself ragged at times for her. But, I do what I must for my mom because she's the only mom I have and I love her.
We do what we know is right by our parents when we are able and can continue doing so. I reach my days at times with mom that I get so frustrated with her behavior towards me and her anger, that I just wanna walk away and tell my younger sister "she's all yours! I"M DONE" days. But I haven't .....YET.
Still hanging in there trying to do my duty as a daughter/son/butch/me for her.


Kelt, what town, state an county is this in? I wouldn't mind helping you google stuff to help you out to keep your head from spinning around so much if you need me to. PM me if you want to, I'm home all the time and can do that, I"m disabled myself.

[MsTinkerbelly]

This is a great list, thank you so much for posting it. I have used a few so far, and some of this will be size of town related (as I am finding) the aging catalog is quite good, though their local state office comes up a bit short. They live in a town of 75k so there is a lot less available than a city of a million.

I have spoken to both her Dr (little to no help) and also the social worker at the nursing home who has given me some contacts. Some of those have panned out and some haven't, I'm going to contact the social worker at the cancer treatment center my father was going to also. I do get a bit tangled up because, of course, nobody is available right now and I end up leaving messages all over town and am always doing something else when they call back. That just is what it is.

One thing I am specifically looking for right away is some sort of geriatric

general MD for my mother. Sort of like a pediatrician only the other way 'round. It seems that it isn't really a popular specialty. At the nursing home there is a practice of four Drs that covers it and the other facilities and the social worker told me I could use them for my mother also. When I called them though it turns out they only see patients who are in a nursing facility and the umbrella group they are in only covers family practice and pediatricians. :confused:

I want to find a Dr for my mother who will take early stage dementia as a
serious possibility (unlike her current Dr) and run some specific tests. It was other medical professionals who noticed her symptoms and told me about this. I have talked to her about it and she agrees that she wants to pursue it so that if there is a problem she can get medication, and if there isn't she will buckle down on making better lifestyle choices around food, sleep, etc, or we can put her somewhere that those things are monitored for her.

If anyone knows of a specific terminology I can search, or ideas of where I can find a geriatric MD, I'd be most appreciative.

Kelt,

Check and see if the area has a senior center, or if there is one in a larger town nearby...they will have a list of Doctors that specialize in geriatric care.

[Kelt]

My folks have Medicare parts A and B, also D for prescriptions which are handled mail order by their medi-gap policy which is through Aetna.

I did just look up through the NAGCM to find Geriatric Care managers and they are all over 100 miles away, on the 'city' side of the mountains. I actually have a copy of a directory called innovAGING put together by one of these corps that run nursing homes (and I imagine many other related 'services') there is a lot of advertising but also some good numbers to chase. The company is Hyatt and they run two of the four nursing homes in the area including the one he is in. Anyone know them? Thumbs up or down?

Right now I'm in a little bit of hurry up and wait. I am booking appts for viewings at places for my mother and we will go to those on the next trip. There is only one 'campus' style CCCR in the area and we have been to it. She likes it a lot and so do I. It would have the advantage of letting her progress in one place, but it doesn't specialize in memory. This is the hard part, showing her things that she could get her heart set on and then maybe having to take it off the table later. I will slant things a bit toward memory places for the next visit.

Now that I've been to all four nursing home options I'm putting together an assessment to go over with my father. They have their pluses and minuses but are largely similar. I know he thinks there must be something nicer and cosmetically there is one that is newer, but the place I have him has a very good staff (others probably do too) and awards for their therapy. All of them allow us to fix up his room any way we want and I will ensure that where ever he is settled for 'long-term' will be nicer in terms of having his own things around him. I haven't gotten into that yet until I can make a determination if he will stay in this place or go to another.

Today was easy, only two urgent calls from the nursing home, one about a wheelchair and one about glasses. My mother of course involved in both. The social worker is being great about giving me a heads up so that I can jump in when needed. I can't get the last form I need for my own taxes, I fired the lawn guy, also known as landlord (that was tricky) and interviewed two new services for here. Tomorrow is a Dr consult for a surgery that looks like I won't be able to have recovery time for so I guess it's a good thing I don't have to have it immediately, and I'm working on the property title for the folks house. I got this. :blink:

[Kelt]

Kelt,

Check and see if the area has a senior center, or if there is one in a larger town nearby...they will have a list of Doctors that specialize in geriatric care.

Ah Ha! I hadn't thought of that one. I'm getting good info from you folks here and in pm's and rep, thank you all! Keep 'em comin'. :cheesy:

[MsTinkerbelly]

Kelt,

When you check out homes, check with your (the state it is in) licensing agency for their most recent facility review, which will give all violations and corrections made by the facility. It is public info, so you will not have trouble obtaining the reports in a timely manner. You can get the telephone number from the facility license which should be posted in plain sight.

Ask for a list of menus from past months, find out flexability of meals and special diets, staff to clent ratio, a list of the past month's activities...do they provide rides to shopping, doctor appointments etc.

Also, be careful when bringing personal belongings to the home...anything of value will disappear very quickly...tis the nature of the beast. Take pictures, affix permenant labels, engrave things like televisions with name or identifying info.

There are exceptional care facilities, and there are exceptionally BAD facilities...since you will not be around to do daily checks, look deeper than they want you to see. I ran care facilities as a certified administrator for 16 years, and the stories i could tell you!

[Kelt]

MsTinkerbelly, you are 100% right. Fortunately the facilities I've gone to seem to be eager to show off their reports and other awards for excellence for bragging rights.

We have been picking up menus and as I schedule the next round of places for my mother on the next trip I've been setting up lunch tours where we will look each place over and then go over the details while having lunch in the dining room with the residents.

The place where my father is also warned us about valuables and we are labeling everything. They gave us a lockbox for any valuables and I put his electric razor in it. Unfortunately, my mother only remembered to give it to him once in two weeks, so I just put in in a drawer where aides can give it to him and if it grows legs I'll just get him another.

So today has been going swimmingly, me making tons of calls and setting appts, making spreadsheets to compare everything (:cheesy: there's always a silver lining) and making several really good quality contacts. I found what I believe to be a really good hospice outfit and am setting up a sit down with the intake nurse for my next trip over so that I can get that into place when the Medicare 100 is over. So, I called the social worker to verify the quality of the hospice orginization and that they like to work with them and....

**** Trigger portion ****

Only one problem.

My father has quit participating in anything. Refusing to get out of bed, go to therapy, eat, anything. So when I called, she told me that they had a conference this morning about him and the Dr will see him tommorow morning. I was clear with my father about how this works: if he makes progress in any of the three therapy areas and participates, Medicare picks up the tab: if he doesn't, they won't.

So now, we are setting up a teleconference call "care conference" on Friday, with all departments and both my mother and father present. I have to figure out how to talk to a man who can't speak, on the phone, in a room full of people he isn't cooperating with, from several hundred miles away...

I, and they, believe he is trying to die. I don't blame him, I would too, this is his living nightmare. He lives in a state with "Death with Dignity" laws, but he has to be able to make verbal requests and self administer the drugs to carry it out.

I seriously don't know what the f*ck to do.

I already pulled the plug once. 6 weeks ago in the hospital they called it at 72 hours and with his medical directive against feeding tubes and DNR in place, signed him off to the 'end of days' type hospice and authorized the fluid IV to be pulled so he would die faster of dehydration. The next morning right before transport got there he woke up. Now here we are. I dunno. Now the only way this works for him is to die of starvation and that will probably break my mother.

Well, once again, thanks for listening.

[TruTexan]

Kelt, I honestly feel for you, your family and everything you are having to go through. Can your father communicate through writing at all since he cannot talk? What about a computer pushing the letters with an aid of some sort so he can type what he needs to say? I'm so sorry he's going through this and that your mom is as well and that you are all alone doing this yourself. If there is anything I can do for you, please let me know. I can lend an ear to listen if you wanna talk one on one. Just trying to offer you a friend if you need one to talk to.
I admire your strength, determination and endurance Kelt. It isn't easy doing what you are doing for your parents and being so far away. It isn't any easier being there with them either, can be more difficult dealing with all this close up first hand too. Keep on keeping on Kelt and hang in there .

[Kelt]

Kelt, I honestly feel for you, your family and everything you are having to go through. Can your father communicate through writing at all since he cannot talk? What about a computer pushing the letters with an aid of some sort so he can type what he needs to say? I'm so sorry he's going through this and that your mom is as well and that you are all alone doing this yourself. If there is anything I can do for you, please let me know. I can lend an ear to listen if you wanna talk one on one. Just trying to offer you a friend if you need one to talk to.
I admire your strength, determination and endurance Kelt. It isn't easy doing what you are doing for your parents and being so far away. It isn't any easier being there with them either, can be more difficult dealing with all this close up first hand too. Keep on keeping on Kelt and hang in there .

It's a good idea, and I did try it. He reads and comprehends well so I took over a large printed alphabet and a pointing device. It turns out to be a one way street, he can get letters in but not out. I think he's short circuited. He can point a drawings that speech therapy gave him of "wheelchair", "bed", "lay down" in picture form. He indicated he wanted my pen and paper once and I gave them to him: it was total frustration for him and I'm not trained in how to do these things. I think over time he could re-learn some, but the cancer would get him before then.

Thanks for the ideas though. :)

[afrcnqueen]

I can so identify with everyone who has posted in this thread in some form or other. I am a caregiver for my mother who is a young 65. I've been taking care or assisting her in some manner on and off for the past 15 years. With me flying back and forth from California for one reason or another. How long I stayed depended on my work, her health (meaning how bad a shape she was in) if I were single or in a relationship.
I left a gf once to come take care of my mother when she was in the hospital for gun shot wounds caused by a family friend. Needless to say he is no longer a friend of the family and said man has since passed away.
I spent that time with my mother for 2 years getting her back to her health or at least where she wasn't dependent on anyone including me. Then gf and I obviously broke up, she wasn't going to move back home with me and she started seeing someone else when I couldn't give her a time frame of when I would be back with her and resume our lives....fast forward to 2010....

I was living in Cali recently single and living my life and enjoying my job and friends. Phone call comes in...my mother isn't doing well I might have to come home for a bit. A bit is still today. This is a woman who was knocking on death's door when I came into town so I didn't think she would last long.
She has been diagnosed with breast cancer 2x the most recent was stage IV currently in remission by the way. She had a heart valve replaced ten years ago and is on Coumadin to prevent blood clots. She is diabetic and currently going through a myriad of complications, she just had a toe amputated 2 weeks or so ago and now they are possibly talking more amputations. The past year she has been in/out of the hospital about a dozen times ( I lost count). From the 3 gun shot wounds she developed other complications over the years including very little use of her left arm because her left elbow was shattered and the prosthetic got infected and had to be taken out.
I know all the nurses by name and face and doctors. I know the hospital in and out like the back of my hand.

I had an aunt who came to visit not too long ago to 'help me' and let me get some time to myself and just be. Well....she ended up needing emergency surgery cause her appendix ruptured so she was no good for about two weeks. I played nurse now to two sick people taking turns going in/out of the hospital. Not even 2 weeks after my aunt's appendicitis she needed gall bladder surgery. Oh. My. God!! Can we say what the eff!?!?!
So I did what I had to do. Aunt has recovered and is well on her way home now.
Mom had been in a rehab facility the past two weeks recovering from the amputation. That wasn't going so well because each day she was in pain and was progressively getting worse. Turns out it is infected!! Guess what, she is back in the hospital for god knows how long. They will probably amputated the other toes while she is in there right now.

Did I mention that I am an only child? That I work and have been working full time since I moved back in 2010. I ran mom to all her doctors appts, surgeries, physical therapies, picked up prescriptions, took care of the house and anything else that needed to be done. Oh and communicated with the rest of the family who are in South Africa about what is going on and how she is coming along.
Some of mom's friends helped as much as they could. But all of them work and have families and their own stuff to take care of. So everything else fell on me. I Love my mother and she was and is my responsibility to take care of.

In the almost 5 yrs since I moved back and started taking care of her. I forgot about me and my needs. She became my priority, my every waking thought and every spare moment I had. when I wasn't at work or sleeping that is.
I know about Stress! I know about being tired. I know about going through the motions and running on automatic pilot. I know about neglecting your own happiness and health to care for someone else. I know about forgetting what it's like to be free of responsibility. I know what it feels like to go through your own aches, pains, sadness, loneliness, fears, anger, guilt, resentment, frustration and anything else you can think of alone. I know what it's like to be involved in a relationship and not be able to make them a priority or run off to go see them. I know what its like to go out for dinner with friends and be mentally occupied by the 'what if i'm not there and something happens?' so you leave early. In a nutshell, I know what its like to drown while awake.
I'm am physically, emotionally and spiritually empty. I have no empathy or sympathy for anyone at the moment. I am angry, tired, empty and just plain sad. It is just recently, that after a long time of carrying it all on my shoulders that a very special person 'suggested' some types of government programs offered by the state and the hospital I am taking advantage of. I am also seeing a therapist. I am right now dealing with the health issues of my own that have risen and I neglected to address.

My head is at least above water. I still cry and not sleep well but I put one foot in front of the other and continue. I crash and fall apart, but what's important is that I get up even when it takes everything I have left for me to do it. I will get through it. And so will all of you who are caregivers and caretakers and partners and friends and family and parents or children.

Thanks for listening *s

[JustLovelyJenn]

I have posted a few times about being a caregiver to my son with autism. A friend today pointed out just how much extra I do to keep my house running smooth. It made me think about my stress levels.

He is ten now.... and my son requires a few extra things at home.

We run a three part behavior program in our home that has to be monitored daily and weekly. He tracks his three chores each day which must be written on a board before he gets home from school so he can check them as soon as he walks in the door. For this he can earn up to $5 a week. He tracks his behavior at school, receiving a yes or no for morning preparations, behavior at school, and completion of homework each day. This requires an email to his teacher every day because he can not be trusted to bring a report home. If he earns 80% of these points he can have a Slurpee and a slice of pizza at 7-eleven on the way home. And we track "respect" at home. If he responds in appropriate respectful ways during his home time he receives 30 minutes a day of computer time on weekdays and 90 minutes on weekends. Disrespectful behaviors like yelling and refusals loose him 5 minutes at a time. More than 3 weekdays with lost time and he looses computer for the weekend.

These guidelines were developed with the help of every adult in his life including his therapist and have to be followed exactly. He has to get his allowance on time or he melts down. He has to get his pizza every Friday or he melts down. He can not do more than three chores or he melts down. Everything had to be carefully worded and explained. And then it took almost two months to get him to do the things we expected with regular success and minimal meltdowns.

We have to plan outings no less than two days in advance. Outings require drop bags that have meds, food, toys and electronics if they are going to be longer than one or two hours. Schedules have to be visually displayed in advance and must be followed. If a change is going to happen in the schedule or an outing is being canceled a rescheduling must immediately be presented, especially if the outing is desirable.

BUT, even with all of this, today I was reminded about the hardest part of taking care of my son. Its effect on my daughter. My son looks normal, he's smart, and he can out think you most of the time. He is physically capable of doing everything anyone else dose... but emotionally and mentally he just doesn't understand so many things. It's hard for my 12 year old daughter to understand why she is held to different expectations than her brother. Why she has more responsibility than him and why she feels like she has to "pick up the slack" so much of the time. I do the best I can to give her extra opportunity to do things she loves. Extra time with her friends, and outside of our home. But she's a caregiver too, and she doesn't even understand it yet.

That made me sad today.

[TruTexan]

This week, I have been to my mom's almost everyday so far for one reason or another. It's reminded me of just how much she needs me to remain here, no matter how bad I feel about my own life and all the loneliness I deal with being away from community of other lesbians and friends and even having a lover.
Today, I realized just how much my mom depends on me and it's been awhile for me to be able to see that because of all the tantrums shes thrown in the past. Today, I was exhausted and fell asleep for a nap and slept 4 hours. I reminded myself today that I have to take care of ME first in order to take care of mom. Today did a lot of realizing things that haven't been in the forefront of my mind.

I'm grateful for this thread. I'm grateful to know that there are others here that are also caretakers of their parents to remind me that I"m not alone in this.

So Today, I say Thank You, Thank you to all of you here that allow us to vent and converse back and forth. Thank you for understanding and having compassion.Thank you for being here for one another. Thank you my friends.

[Cailin]

today my client wanted to go get a belt for her daughter in law

dilemma 1) daughter in law is in England,

dilemma 2) client cannot walk well, has lupus

so I called in advance to ask where I should park to have the least amount of walking (she doesn't have a wheelchair, just walker). I park where they indicate me to.... only to realize we are nowhere near the Coach store. so we leave the Macy's store that we were told to park at and then drive to the other side. we finally get to the correct store-- they don't sell womens belts in the store.

(I'm laughing at this point-- sod's law)

she then wants to try saks fifth. so we drive over. this time I go in to check it out first, so she doesn't have to walk unnecessarily. Nope, they stopped selling belts


"well, this was an excersize in futility" she said

I agree-- we should have known the moment we were told to park at the wrong place.



just another day in the world of caregiving.

[Kelt]

First up I just want to say that this thread is proving to be really good tool for decision making in that if I have to write things down in a way that explains it to a general someone else, I have to get it pretty clear in my own head first to do that. So, thanks folks.

I also have my best Bud of 38 years in my corner; he has been going through a lot of this with his mother for the last decade, she is 92 and his experiences are helping me see a bit further down the road than I otherwise could.

*****************

A new day, a new set of decisions. This is an update to this (http://http://www.butchfemmeplanet.com/forum/showpost.php?p=979891&postcount=107) post.

Yesterday was a busy one. I spoke to the hospice intake nurse I had been setting an appointment with for when I would be there, and she drove over to the nursing facility to do and evaluation with my folks now rather than later. She had access to all of the medical records, spoke with the Dr on site and my father's previous GP. She spoke individually and together with both of my parents and then called me. After a lengthy discussion with the nurse, and then a long call with my mother in the evening, I have decided what's next.

I'm going to have my father re-catagorized from a rehab patient to a hospice "Comfort Care Only" patient. I will have Medicare stop paying for room and board, my mother will start being responsible for that portion of it. (Read: I will sort out her income and set up a financial plan on my next trip and hand her the checkbook and tell her what to write and to whom. No responsibility there. :blink:) Hospice will begin billing Medicare for their services and we (mother) will pick up any financial overruns with me in the audit seat.

He qualifies for hospice with his stroke related issues so I don't have to run around getting the cancer angle worked out which is a big relief to me. He will be offered pretty much whatever he wants without any pressure to do anything that would make him uncomfortable or cause duress. With his physicians directive and DNR in place, we will let nature take it's course without alteration. He has made it clear to everyone involved that this is his choice and preference. I will call the director of the facility today to see if this can be done without the conference call.

I will make this as seamless as possible for my mother, although that may be tricky. She is completely overwhelmed by paperwork and jargon, she doesn't understand it. When we signed him in, I was her effective proxy. It was as my Buddy described; the facility was so relieved to see an adult child arrive that they worked almost exclusively with me. They had one simple form for my mother to sign reassigning her signature to me as a "family Representative" and another for me stating my roll as representative and releasing me from any financial culpability as her proxy. It worked well because I was there in person. I hope to delay paperwork until I get there but have prepped my mother that she may have to sign some things she doesn't understand (something she has never done) and I will have to guide her on the phone as it happens.

It feels right and I am glad to have something going into place that makes sense for the situation. I speak only from my family's position as atheists and right to die proponents. This set of decisions is obviously not mainstream, but it works for us.

Thanks for listening, I'll be back with and update to my whole 'decisions about mother' later.

*****************

I found what I think is a good resource, especially for my mother, but also myself, in learning what to expect, and what some good questions to ask are regardless of a persons beliefs around death. An NIH booklet titled "End of Life: Helping with Comfort and Care (http://www.nia.nih.gov/sites/default/files/end_of_life_helping_with_comfort_care_0.pdf)" I would recommend it to anyone dealing with a situation that may end in death as general good information.

[MsTinkerbelly]

First up I just want to say that this thread is proving to be really good tool for decision making in that if I have to write things down in a way that explains it to a general someone else, I have to get it pretty clear in my own head first to do that. So, thanks folks.

I also have my best Bud of 38 years in my corner; he has been going through a lot of this with his mother for the last decade, she is 92 and his experiences are helping me see a bit further down the road than I otherwise could.

*****************

A new day, a new set of decisions. This is an update to this (http://http://www.butchfemmeplanet.com/forum/showpost.php?p=979891&postcount=107) post.

Yesterday was a busy one. I spoke to the hospice intake nurse I had been setting an appointment with for when I would be there, and she drove over to the nursing facility to do and evaluation with my folks now rather than later. She had access to all of the medical records, spoke with the Dr on site and my father's previous GP. She spoke individually and together with both of my parents and then called me. After a lengthy discussion with the nurse, and then a long call with my mother in the evening, I have decided what's next.

I'm going to have my father re-catagorized from a rehab patient to a hospice "Comfort Care Only" patient. I will have Medicare stop paying for room and board, my mother will start being responsible for that portion of it. (Read: I will sort out her income and set up a financial plan on my next trip and hand her the checkbook and tell her what to write and to whom. No responsibility
there. :blink:) Hospice will begin billing Medicare for their services and we (mother) will pick up any financial overruns with me in the audit seat.

He qualifies for hospice with his stroke related issues so I don't have to run around getting the cancer angle worked out which is a big relief to me. He will be offered pretty much whatever he wants without any pressure to do anything that would make him uncomfortable or cause duress. With his physicians directive and DNR in place, we will let nature take it's course without alteration. He has made it clear to everyone involved that this is his choice and preference. I will call the director of the facility today to see if this can be done without the conference call.

I will make this as seamless as possible for my mother, although that may be
tricky. She is completely overwhelmed by paperwork and jargon, she doesn't understand it. When we signed him in, I was her effective proxy. It was as my Buddy described; the facility was so relieved to see an adult child arrive that they worked almost exclusively with me. They had one simple form for my mother to sign reassigning her signature to me as a "family Representative" and another for me stating my roll as representative and releasing me from any financial culpability as her proxy. It worked well because I was there in person. I hope to delay paperwork until I get there but have prepped my mother that she may have to sign some things she doesn't understand (something she has never done) and I will have to guide her on the phone as it happens.

It feels right and I am glad to have something going into place that makes
sense for the situation. I speak only from my family's position as atheists and right to die proponents. This set of decisions is obviously not mainstream, but it works for us.

Thanks for listening, I'll be back with and update to my whole 'decisions about mother' later.

*****************

I found what I think is a good resource, especially for my mother, but also myself, in learning what to expect, and what some good questions to ask are
regardless of a persons beliefs around death. An NIH booklet titled "End of Life: Helping with Comfort and Care (http://www.nia.nih.gov/sites/default/files/end_of_life_helping_with_comfort_care_0.pdf)" I would recommend it to anyone dealing with a situation that may end in death as general good information.

Kelt, ** trigger warning** death and dying

When my Mom got to the point of pain and no hope, my sister and i were asked by the hospital hospice team to talk with her about her options. Mom was on dialysis, was about to lose both feet, and had a stomach infection eating her alive. I should back up a bit and tell you that when they wanted to have a hospice meeting, neither one of us thought death and dying, we thought care plan for the future! Soooo, needless to say we were crushed!

Mom chose to stay in the hospital hospice, and to terminate dialysis; she lasted 1 week before she died. I stayed with her for the entire week...my wife brought me clothes and i used her shower. It was the most difficult thing i have ever done in my life.

As a Christian and a proponent of assisted suicide, i agree with your decision 100% (not that you need my validation), and as i read your post yesterday re your father's condition my mind went to the memory of the peace my mother's decision gave her, and hoped you would find a way for your father to retain his dignity, and you your sanity.

I wish you strength during this time Kelt.:bunchflowers:

[TruTexan]

Kelt,
My father also decided to do hospice and stop all care for his heart, have his pacemaker shut off because his kidneys were failing, he was diabetic, had had more than 2 heart attacks after having had 3 recent foot removal operations, and he just couldn't do it anymore. He was ready to die, had made peace with it, decided on his own that he wanted to do hospice in a nursing home setting in his own room. I stayed with my father overnights, switching out evenings with my half sister his other daughter and my half brother his son, in evenings after his work. My father made peace with everyone he felt he needed to including my mother and I. I was with my father overnight the evening he passed away, my brother had just left to go home when I had to call him on his cell to have him come back. My father passed a week after being put into hospice, on July 20th,2014. I understand what you're about to go through and I hope your father's decision gives him peace within as it did mine, and I wish you and your mother peace during your time of need.

[princessbelle]

I can so identify with everyone who has posted in this thread in some form or other. I am a caregiver for my mother who is a young 65. I've been taking care or assisting her in some manner on and off for the past 15 years. With me flying back and forth from California for one reason or another. How long I stayed depended on my work, her health (meaning how bad a shape she was in) if I were single or in a relationship.
I left a gf once to come take care of my mother when she was in the hospital for gun shot wounds caused by a family friend. Needless to say he is no longer a friend of the family and said man has since passed away.
I spent that time with my mother for 2 years getting her back to her health or at least where she wasn't dependent on anyone including me. Then gf and I obviously broke up, she wasn't going to move back home with me and she started seeing someone else when I couldn't give her a time frame of when I would be back with her and resume our lives....fast forward to 2010....

I was living in Cali recently single and living my life and enjoying my job and friends. Phone call comes in...my mother isn't doing well I might have to come home for a bit. A bit is still today. This is a woman who was knocking on death's door when I came into town so I didn't think she would last long.
She has been diagnosed with breast cancer 2x the most recent was stage IV currently in remission by the way. She had a heart valve replaced ten years ago and is on Coumadin to prevent blood clots. She is diabetic and currently going through a myriad of complications, she just had a toe amputated 2 weeks or so ago and now they are possibly talking more amputations. The past year she has been in/out of the hospital about a dozen times ( I lost count). From the 3 gun shot wounds she developed other complications over the years including very little use of her left arm because her left elbow was shattered and the prosthetic got infected and had to be taken out.
I know all the nurses by name and face and doctors. I know the hospital in and out like the back of my hand.

I had an aunt who came to visit not too long ago to 'help me' and let me get some time to myself and just be. Well....she ended up needing emergency surgery cause her appendix ruptured so she was no good for about two weeks. I played nurse now to two sick people taking turns going in/out of the hospital. Not even 2 weeks after my aunt's appendicitis she needed gall bladder surgery. Oh. My. God!! Can we say what the eff!?!?!
So I did what I had to do. Aunt has recovered and is well on her way home now.
Mom had been in a rehab facility the past two weeks recovering from the amputation. That wasn't going so well because each day she was in pain and was progressively getting worse. Turns out it is infected!! Guess what, she is back in the hospital for god knows how long. They will probably amputated the other toes while she is in there right now.

Did I mention that I am an only child? That I work and have been working full time since I moved back in 2010. I ran mom to all her doctors appts, surgeries, physical therapies, picked up prescriptions, took care of the house and anything else that needed to be done. Oh and communicated with the rest of the family who are in South Africa about what is going on and how she is coming along.
Some of mom's friends helped as much as they could. But all of them work and have families and their own stuff to take care of. So everything else fell on me. I Love my mother and she was and is my responsibility to take care of.

In the almost 5 yrs since I moved back and started taking care of her. I forgot about me and my needs. She became my priority, my every waking thought and every spare moment I had. when I wasn't at work or sleeping that is.
I know about Stress! I know about being tired. I know about going through the motions and running on automatic pilot. I know about neglecting your own happiness and health to care for someone else. I know about forgetting what it's like to be free of responsibility. I know what it feels like to go through your own aches, pains, sadness, loneliness, fears, anger, guilt, resentment, frustration and anything else you can think of alone. I know what it's like to be involved in a relationship and not be able to make them a priority or run off to go see them. I know what its like to go out for dinner with friends and be mentally occupied by the 'what if i'm not there and something happens?' so you leave early. In a nutshell, I know what its like to drown while awake.
I'm am physically, emotionally and spiritually empty. I have no empathy or sympathy for anyone at the moment. I am angry, tired, empty and just plain sad. It is just recently, that after a long time of carrying it all on my shoulders that a very special person 'suggested' some types of government programs offered by the state and the hospital I am taking advantage of. I am also seeing a therapist. I am right now dealing with the health issues of my own that have risen and I neglected to address.

My head is at least above water. I still cry and not sleep well but I put one foot in front of the other and continue. I crash and fall apart, but what's important is that I get up even when it takes everything I have left for me to do it. I will get through it. And so will all of you who are caregivers and caretakers and partners and friends and family and parents or children.

Thanks for listening *s

You are going through so much i don't even know where to start your hugs at. It sounds like you may be getting some help at this point and it sure sounds like you need it.

I've said this before but sometimes it's just knowing who to reach out to so that we can get some support. Once that door opens, then other doors seem to open. I know you are overwhelmed, tired, frustrated and at wits end, but i hope you also are proud of yourself. I'm proud of you. Just reading everything you've done for your mom, your aunt, keeping your family updated and so on, i am VERY proud of you and can tell you are someone that does not take family lightly or for granted. Your mom is lucky you are her daughter.

Hang in there. Therapy is a GREAT idea. Talk to friends, family, here on this thread, talk to anyone that will listen. I will listen!!! "WE" will listen!!!!

Hold that head high. You WILL get through this!!!!

[TruTexan]

I can so identify with everyone who has posted in this thread in some form or other. I am a caregiver for my mother who is a young 65. I've been taking care or assisting her in some manner on and off for the past 15 years. With me flying back and forth from California for one reason or another. How long I stayed depended on my work, her health (meaning how bad a shape she was in) if I were single or in a relationship.
I left a gf once to come take care of my mother when she was in the hospital for gun shot wounds caused by a family friend. Needless to say he is no longer a friend of the family and said man has since passed away.
I spent that time with my mother for 2 years getting her back to her health or at least where she wasn't dependent on anyone including me. Then gf and I obviously broke up, she wasn't going to move back home with me and she started seeing someone else when I couldn't give her a time frame of when I would be back with her and resume our lives....fast forward to 2010....

I was living in Cali recently single and living my life and enjoying my job and friends. Phone call comes in...my mother isn't doing well I might have to come home for a bit. A bit is still today. This is a woman who was knocking on death's door when I came into town so I didn't think she would last long.
She has been diagnosed with breast cancer 2x the most recent was stage IV currently in remission by the way. She had a heart valve replaced ten years ago and is on Coumadin to prevent blood clots. She is diabetic and currently going through a myriad of complications, she just had a toe amputated 2 weeks or so ago and now they are possibly talking more amputations. The past year she has been in/out of the hospital about a dozen times ( I lost count). From the 3 gun shot wounds she developed other complications over the years including very little use of her left arm because her left elbow was shattered and the prosthetic got infected and had to be taken out.
I know all the nurses by name and face and doctors. I know the hospital in and out like the back of my hand.

I had an aunt who came to visit not too long ago to 'help me' and let me get some time to myself and just be. Well....she ended up needing emergency surgery cause her appendix ruptured so she was no good for about two weeks. I played nurse now to two sick people taking turns going in/out of the hospital. Not even 2 weeks after my aunt's appendicitis she needed gall bladder surgery. Oh. My. God!! Can we say what the eff!?!?!
So I did what I had to do. Aunt has recovered and is well on her way home now.
Mom had been in a rehab facility the past two weeks recovering from the amputation. That wasn't going so well because each day she was in pain and was progressively getting worse. Turns out it is infected!! Guess what, she is back in the hospital for god knows how long. They will probably amputated the other toes while she is in there right now.

Did I mention that I am an only child? That I work and have been working full time since I moved back in 2010. I ran mom to all her doctors appts, surgeries, physical therapies, picked up prescriptions, took care of the house and anything else that needed to be done. Oh and communicated with the rest of the family who are in South Africa about what is going on and how she is coming along.
Some of mom's friends helped as much as they could. But all of them work and have families and their own stuff to take care of. So everything else fell on me. I Love my mother and she was and is my responsibility to take care of.

In the almost 5 yrs since I moved back and started taking care of her. I forgot about me and my needs. She became my priority, my every waking thought and every spare moment I had. when I wasn't at work or sleeping that is.
I know about Stress! I know about being tired. I know about going through the motions and running on automatic pilot. I know about neglecting your own happiness and health to care for someone else. I know about forgetting what it's like to be free of responsibility. I know what it feels like to go through your own aches, pains, sadness, loneliness, fears, anger, guilt, resentment, frustration and anything else you can think of alone. I know what it's like to be involved in a relationship and not be able to make them a priority or run off to go see them. I know what its like to go out for dinner with friends and be mentally occupied by the 'what if i'm not there and something happens?' so you leave early. In a nutshell, I know what its like to drown while awake.
I'm am physically, emotionally and spiritually empty. I have no empathy or sympathy for anyone at the moment. I am angry, tired, empty and just plain sad. It is just recently, that after a long time of carrying it all on my shoulders that a very special person 'suggested' some types of government programs offered by the state and the hospital I am taking advantage of. I am also seeing a therapist. I am right now dealing with the health issues of my own that have risen and I neglected to address.

My head is at least above water. I still cry and not sleep well but I put one foot in front of the other and continue. I crash and fall apart, but what's important is that I get up even when it takes everything I have left for me to do it. I will get through it. And so will all of you who are caregivers and caretakers and partners and friends and family and parents or children.

Thanks for listening *s

Hugs to you and what you've been through, are going through and will go through in the future. I commend you for taking care of your mom and I too am here to read, listen, talk to, converse with, etc etc etc. I am one the "we's" Princess mentioned, as are others in this thread I'm sure. We're all going through different things at different times and we've all made sacrifices to a degree or will make them in the future. Be PROUD OF YOU. I am.
I'm around most of the time if you ever need to just vent or talk or discuss. I check in often, I don't work , I'm disabled but if you need me ever, I"m there. It's tough I know, I go to therapy to deal with my own issues as well as dealing with my mom and how she handles her behavior with me. It's stressful often and drives me nuts to the point that sometimes I want to quit, but I DON'T. I won't. I can't. She's my mom and she needs me just like all of our parents need us to be there for them. So hold your head up HIGH , SMILE when you look in the mirror each day, KNOW that you are doing the right things within yourself, even when things get so difficult you feel like tossing in the towel and don't, you keep going. Just don't forget to take care of YOU in the mean time. YOU come first so that you can do for mom.

[Medusa]

This thread popped up on the front page and is so timely right now.

I thought I would be a lot older when my parents started having severe health issues and I was put into the role of caregiver (even on a semi basis).

I've talked openly about my Pops and his struggle with Cancer, the VA healthy system, and my role in his care. I have found myself frustrated, sad, angry, and mentally exhausted at different times during the journey of his care and hospital visits and stays. I've looked around online for support and it has helped some to know other people go through all of the emotions too.

At this point, my Pops is Cancer-free and can lead a normal life but basically has regressed from a man who used to never want anyone to do anything for him because he "could do it himself" to this person who expects me to do *everything* for him. Anything from calling a cable company for him to doing his taxes. He is capable of doing these things but it's almost like he got comfortable with not having to handle anything. Needless to say, we've had to have conversations about how he has got to step back up and handle certain things in his life because I am working full-time and still going to school full-time and can't take on some of that stuff.

It's tough and worth it but there are days when I am emotionally tired.

[TruTexan]

Ok, I'm tired today. I've been running all week back and forth to take care of things for mom, both my aunt and my uncle and back and forth we went. Today I had to go replace the fuel pressure regulator on mom's car(leaking gas), so had to take the car to my uncle's house to borrow tools to do that. FIXED THAT.I'm still waiting on the AC control panel to come in the mail form my sister, so I can go replace that too. Next thing I've been doing is working on my aunt's issue all week with her high cost of medicare part B drug copay deductible. There just doesn't seem to be any help out there for her in our county. I've exhausted all avenues to no avail.And state issued Medicaid does NOT cover prescriptions, talked with the state medicaid OMBUDSMAN directly in Austin over medicaid about it. So, whenever my aunt and uncle need help with things such as medicare issues, medicare state paid premiums, paperwork, etc, I am their go to gal. I've also been dealing with a long term issue to resolve their telephone constantly going out on them after it rains. I've spoken to so many supervisors, my head hurts. Hopefully it will get resolved and soon as they are both medical patients with either Heart or Copd issues, so they have to have a working phone at all times. This is my mom's brother and sister-in-law, they are all up in age here around me, and all younger than my mom, late 60's to early 70's with my mom at 73, they stair step in ages. I also get calls from her other younger brother to do computer stuff for him or fix their computer issues for them, or order parts online etc etc etc. Which I just fixed their computer the day before yesterday. So, all I've been doing all week long is doing for others. The rest of today, I'm not going to do anymore if I can help it. I need time for me to recoup my brains and mental and physical exhaustion from all the things this week.

I hope the rest of you are getting needed rest as well. Have a good weekend, all of you.

[afrcnqueen]

Thank you princess belle and Tru for all your kind words and support. It does help to know that I am not alone in this. I also want to say Hugs to everyone on this thread who is and has taken the role of being a caregiver. It is a difficult task but we do must be done for those we love. My thoughts and prayers are with you all. Please take care of yourselves and I will do the same.

[Kätzchen]

Thought I would share a tiny bit more about my role as a caregiver to not only my mother, but as a caregiver to my youngest son.

Last summer, my youngest son lived on his own, worked a relentless schedule at work (upwards of more than 60 hrs/wk), then moved back home last October and fell apart mentally and emotionally. For the past three months, I have observed him having lucid moments to sheer irrationality, bordering what I think has spiraled into a strange case of schizophrenia.

My youngest son spends hours sleeping or will wander off for unexplainable walks to unknown locations. Only to come back and melt into his bed and have conversations with people you cannot see.

He's been in and out of the hospital. No insurance, not able to work, can't get him to go to a social service agency to get approved for a state medical card or be evaluated properly by medical personnel.

There are days I feel I can't take another single incident or event --- with either my son or my mother (she is and can be very needy).

But I keep watch over my son and look for ways I can lead him to safety, when he seems to be lucid/rational.

My heart goes out to those of us who are caring for people, near and dear to us.

[Martina]

I am truly terrified as I enter this phase. I am afraid I am not going to be good at caretaking, that I will be impatient or bring her down with my sadness and fear.

I also hate to see her struggle with anything really. This is my mother I am talking about. I can't say the words, but this is a disease where there is not a lot of hope. We do hope. But it's hard. I mean it's hard. It's weird sitting in a neuro unit listening to others and wishing your mom had been shot in the head or had had a stroke. Or had heart disease or anything else almost. She's always been healthy. Always afraid of illness too. And then this. She is not prepared for it.

I just want to find the thing in the universe that I can blame for this and beat it to a bloody pulp. If we were wealthy, we could not buy our way out of this. We are going to a world famous cancer center in a couple of weeks. My mom overheard a nurse talking about it and referred to us as richy riches. We're not. Far from it. We have insurance and the sense to go to a world famous cancer center. I mean, shit, who would not try to go to one?

But no one has a handle on this. No one. A future generation may not face this terrifying prospect, but my mom will.

[TruTexan]

My heart goes out to you, your mom and your family, Martina. I pray for your mom to have a successful journey fighting this disease. I know all too well the toll cancer can take on a family, my uncle had brain cancer. I wish you strength and patience in your time of need and for your mom I wish her courage, strength, willpower, and wellness.

[princessbelle]

I am truly terrified as I enter this phase. I am afraid I am not going to be good at caretaking, that I will be impatient or bring her down with my sadness and fear.

I also hate to see her struggle with anything really. This is my mother I am talking about. I can't say the words, but this is a disease where there is not a lot of hope. We do hope. But it's hard. I mean it's hard. It's weird sitting in a neuro unit listening to others and wishing your mom had been shot in the head or had had a stroke. Or had heart disease or anything else almost. She's always been healthy. Always afraid of illness too. And then this. She is not prepared for it.

I just want to find the thing in the universe that I can blame for this and beat it to a bloody pulp. If we were wealthy, we could not buy our way out of this. We are going to a world famous cancer center in a couple of weeks. My mom overheard a nurse talking about it and referred to us as richy riches. We're not. Far from it. We have insurance and the sense to go to a world famous cancer center. I mean, shit, who would not try to go to one?

But no one has a handle on this. No one. A future generation may not face this terrifying prospect, but my mom will.

My heart goes out to you and yours.

It's like being on the edge of a cliff and having no idea if the other side is a thousand mile drop or a step and even more terrifying is knowing there is no safety net, no harness to hold you up. I get it. We get it. Hang in there. One day at a time. One hour, one minute at a time. That is all you can do. :rrose:

[Kelt]

I actually took the day off today.

It was hard as things kept popping into my head but I just jotted them onto a list for tomorrow. I slept in, errands, shopping, gym, library, cleaned the house, and enjoyed a river walk.

I did pick up a couple of books at the library researched the day before but didn't open them. Now I'm watching a movie.

MUCH. Needed.

[afrcnqueen]

The latest update with mom:

She went back into the hospital on Tuesday last week with a MRSA infection on the toe that was amputated.
She was in more pain than before.
While in isolation this week and fighting off the infection. She decided to have the surgeon take the entire foot about 1/3 of the way down from the knee. This way she has a better chance of wearing a prosthetic after.
Will the foot amputation work and she will be on the mend and pain free? Can't say. Don't really know. she also has the other foot to deal with in the near future. She may end up amputating that one as well.

In the meantime, I need to think about making the house accessible for her to get around in. Things such as wheel chair ramp; stair lift for the internal of the house; or possibly turning the basement into a 'studio' type living area for her.

I'm numb to be honest. I'm also overwhelmed. But I must do what needs to be done for her.

[TruTexan]

It's days and evenings like this one I just want to pull my fucking hair out and say.....don't call me bitching cause something is broke on your car, your brother says nothing is wrong and don't change out the part, and yoU KNOW it's broken and had my sister order the part for you, then tell ME I don't know what the fuck I"m talking about nor do I KNow what I know in how to replace the damned thing for free..............???? REALLY MOM???? I was a fucking mechanic !! REALLY?????????? ARE YOU going to tell me AGAIN HOW STUPID I AM and I DON"T KNOW WHAT THE FUCK I"M DOING??????????? OH MY FUCKING GAAWD!!! I Just want to pull my fucking hair out now!

[JustLovelyJenn]

Today was such a hard day. I am so emotionally spent. Its hard to keep it together by the end of the day when things go this way.

I know... I'm a mom, kids have bad days... I get it. But I'm not just a mom... I'm an AUTISTIC MOM. That means I'm part mom, part caregiver, part behavior specialist, part psychologist, part special education teacher, part mediator, part enforcer...

Today I took my kids to swim at the YMCA, like we do every Friday. My son broke his goggles recently. He doesn't have a new pair yet. Well, today the Y didn't have a loaner pair. So he stood and waited for someone to return a pair, he tried to fix a broken pair, he hovered by the stairs watching for another pair to appear, and finally... he started harassing the kids who got to them first to find out when they would be done with them so he could have them. We talked about it, I reminded him that Easter was soon and he got all his summer toys in his basket so he might get a pair then. I gave directions for him to do something else and finally I gave an ultimatum that if he couldn't play and stop bothering people he would have to leave. He refused. He was totally fixated on the goggles and nothing else existed. Finally after almost 20 minutes of trying to get him back on track I told him we needed to go change and grandma would come and get him. That he could try again on Wednesday. He started SCREAMING... he screamed and threw a tantrum loud enough that the Y attendant came and shut the door to the family room. I know I had other parents looking at us and wondering why I was letting my child behave this way. It took an addition 20 minutes of him screaming and crying and pulling at me and refusing... to get him out of the building and into his grandmothers waiting van (my daughter was still inside playing). That last few steps out the door as I am standing behind him pushing him forward a gentleman opened the door and held it for me with an understanding look. I almost broke down in tears on the spot.

He hasn't had meltdowns like this in a long time. I know things have been harder for him lately, and we are dealing with med changes again. But its physically and emotionally exhausting to have to calmly try and convince someone who is being so aggressive to do what you need them to do. Especially because he's not a little boy any more. I can't move him, or restrain him on my own. If he doesn't go willingly, I'm stuck. He's always sorry after, he just can't control himself in that moment.

I really need a break.

[Cailin]

Flomax is a prescription that basically helps someone urinate.. and in some cases, urinate frequently.

My client has a prescription and he quite often makes funny quips about Flomax

One day he said (in his South African accent, which adds to the humor for me) "I thought of a new curse," he said. "Oh yea, what's that?". He goes "May you ever have to take Flomax"

So today, city workers were outside cause a major raucous (he likes his quiet.. he calls the police on barking dogs). He says "When they get off work, they should all have to take 20 Flomax's each"

smh.

[Kelt]

We'll see how this works posting from my phone, please forgive any errors.

Today I pulled the plug on my father for the second time. As I mentioned in a previous post, a couple of months ago when all of this started I signed him off to hospice and had his IV removed, and then he went and woke up.

It's been two horrible months in a nursing home. He is basically starving himself, and now he is at a state where he just sort of fades in and out of consciousness. A little while back I put him in hospice care and three days ago I took him off of all medications other than pain and anxiety. (It's not like he needs his blood pressure meds now). About a week and a half ago, he was having a hard time breathing but his blood oxygen was still staying high enough. At the time I had to make the decision to give him a little extra oxygen just as a comfort measure, not to be sustaining, so that he wouldn't have to work so hard. Now that some time has gone by, and he hasn't had even fluids for four days I've decided to remove the oxygen just in case it is now acting as an artificial support.

I feel like I live in a barbaric country, there is no way anyone could ever consider this humane, he looks like something straight out of a concentration camp. This is tearing my mother to pieces, and it's not doing me any good either. If this is how nature takes it's course with a stroke victim, shouldn't we be humane enough with all of our medical advances to help them just a little at the end? Rhetorical question of course.

I would, (and could), treat a dog better.

(If anyone is wondering, all of the attorneys carefully crafted words can't help in this situation, the paperwork is in order to prevent this from happening, yet it is.)

I had planned to drive home last Saturday and I am getting to the point where I really will not be able to stay here much past tomorrow as I have kept pushing off my own obligations at home. Today was especially fun, I got to take my mother to the funeral home so that we could fill out all of the paperwork and pay for the things we are going to have done in advance since she can't deal with it by herself if for some reason I cannot be here long enough.

Mother is a whole other story entirely, and I won't go into it today. Suffice to say, my ideas of what kind of help she needs going forward are changing the more time I spend with her. I'm trying not to kill her about nine times a day, but it just isn't her fault. She really is that confused.

I'm afraid this is a jumbled mess, but trying to do this on the phone isn't working. I'll wait until I get home to post more. Thanks for listening.

[Kätzchen]

Sometimes, when life is terribly difficult (like last week when my son decided he didn't need his arm or hand anymore and he ended up having emergency surgery - he goes back for more surgery tomorrow), I count myself super lucky that I live where hundred year old Larch stand tall in dense groves of pine.

Spending time among the trees and waterfalls helps in transcending painful life events and helps me so much.

http://media.dallas.city.cx/sites/70/2014-02/hVDRvYFZ.jpg

Sending lots of peaceful energy to everyone, tonight. :candle:

[Kelt]

It worked. He's free. Exhale.

[TruTexan]

I swear, the last few days in a row there is NO Pleasing my mother and she remains upset over things that I have nothing to do with, like her car having issues and she won't let ME fix it, and takes it to a mechanic whom can't get said parts at the local parts stores, I can order them and replace them myself, but NOOOOOOOOOOO. And so she bitches about it more and takes all her crap anger out on me. And my younger sister is in the worst mood eva, she didn't want that phone call about the part she ordered that is WRONG, now she's gotta eat that cost and buy another one, but she won't let me ORDER THE PARTS MYSELF, so she's in a piss pooor mood and feeling the strains financially herself and may be losing her job (i hope not) and is feeling like she's the only one doing stuff for our mom, when in fact she is financially but not with everything else that comes along with caregiving stress(see she lives in Tennessee, not Texas). Our older sister needs to get off her ass and start helping financially(years over due on this fact). I would but I can't, I live on disability small check, so I do the other things like fix shit, take mom to the doctor, handle any paperwork and insurance shit that goes awry, deals with SSI and social security, gets her help financially with her electric bill, and fixes the lawnmower and what she will allow me to repair on the car. MY GOD I"m so sick of my mother's attitude that it sucks being around her. I know I shouldn't feel this way, but man, I just feel like I'm done when she's like this and I want to move and move on with my own life, find a partner that I can love and loves me in return, etc and move on with my own damn life. I don't have a life of my own . UGH
I have a migrane today over mom's and my sisters issues upsetting MY issues I deal with. Dammnit, I just got back into town and been running my ass off for the last several days in a row, since last Friday, and tomorrow I have to go see a neurosurgeon for my back, then when that's done, come back and take mom to go pick up her car, which couldn't be fixed and that she has to spend money on to put it all back together. UGH UGH MF UGH.


DO I have permission to stick my fucking head in a hole in the dirt and have someone bury me ? UGH

[TruTexan]

After having flown to TN with my mom and staying there a week at my younger sister's home. Mom got into a small tiff with my sister in which I had to set them both down and tell them I can't take the stress and neither can they. I made them hash out what was going on to try to resolve it.

Ok, now we're( mom and I) on the plane this past Monday and mom is fine, we land and wait for my uncle and she's fine. We get into the car and start driving. A little while passes and mom just explodes on me like fireworks went off and starts this yelling screaming bull shit, blaming me, saying ugly abusive things to me and one of them was that I never help her. I tried my hardest to ignore her and asked her to please just STOP, then my anxiety and ptsd went through the roof because she just kept on and on and on. Nagging and bitching at me and carrying on like some lunatic. My uncle is driving and we are distracted by the heavy rain falling and all the yelling in the car. I'm trying to focus on watching for our signs for turns to get to the freeway to take us home. He stops the car at a gas station and goes inside to the bathroom. I'm in the car with my mom and she's yelling and screaming at me even more and then from the back seat she reaches forward balls up her fist and starts hitting me in my right shoulder that's between the seat and car window and starts threatening me shaking her fist at me. I got out of the car, pulled open the back door and told her that if she didnt' quit hitting me I was going to call the cops and have her arrested for assault then get her evaluated for help because I can't take anymore shit. I've been helping my mom since my step father passsed away in Jan. 2010 and I've been having to put up with her abuse and treatment for 5 1/2yrs now. I got back into the front seat, buckled up and lost my control, yelled at her and told her I"M FUCKING DONE. AND I"M NOT TAKING HER TO THE DOCTOR TUESDAY. She begins to tell me OH YES YOU ARE. I said MOM, What part of DONE do you NOT UNDERSTAND? I'm NOT TAKING YOU ANYWHERE ANYMORE and she better call my uncle SAmmy to take her to the doctor. I told her I didn't want any further contact from her, not to call me later and apologize because her apologies are worthless and meaningless because they mean nothing without her change in her behaviour. That I didn't want to hear from her again and not to call me for anything. I'm so overwhelmed with anxiety and depression and ptsd rearing it's ugly head I'm losing my coping skills again. I didn't sleep at all after I got home that night. I had night terrors one on top of another and would wake up in fear and sweating. I had to call my case manager at the Andrews Center where my therapist works and where my doctor is to see if there is ANY WAY POSSIBLE that they can find a way for me to continue seeing my therapist and use my medicare insurance that will pay for more therapy. The center only allows so many sessions and I'm out of sessions. I was crying on the phone with my case manager practically begging her for her help. I just don't know how to walk away without a support system emotionally and mentally. I need my therapists help to get through this and the guilt that I feel inside. I called my younger sister and told her what happened and that I just couldn't do it anymore that it's affecting me too much to continue helping our mom. I then asked my sister if she had any understanding of why mom chooses to do this shit to only me and no one else, my sister had no answer and could only say I"m sorry, so I told her I was DONE taking care of mom, that I needed to take care of Me because I can't deal with mom anymore. It's just too much, and all she could do was be quite on the phone, listen, and in a soft voice to me said OK, OK.
Man, I have so much stuff on my own plate that is overwhelming me and now this shit with my mom. I feel like I'm such a bad person for telling mom that I can't do it anymore because of her behavior. I live in a one horse town and there is only 2 people here that I consider friends in my all adult seniour citizens apt complex. I have only 1 that will talk to me about this stuff but has nothing really to say about it except that she's sorry I"m going through all this with my mom. I Need Emotional support from friends and family and I just don't have that. I am reaching out to those of you caregivers to see if you all can help give me this. I need all the emotional support I can get. I'm all alone here and no one in my family understands. I called my grandmother and a dear friend from online and both tell me to take care of myself and leave my mom alone and don't talk to her if she calls. I know I have to take care of me because if I don't and my depression gets any worse, I'll be so messed up and end up having a nervous breakdown. Which I cannot stop if it happens. All I can do is ask for emotional support from online friends and my therapist and case manager. I'm also going to go through back surgery on June 18th and I don't need anymore stress in my life. I need calm and peace to be able to go through recovery until my back is healed. So, please , if you can, send me messages and talk with me even if it's just talking about the weather. I would appreciate it.
Thanks in advance,
B.

[Kelt]

Well folks, after three days of mother being bat-shit crazy, I've got her moved.

She's got her things, she's in a place I consider to be much safer, and she has little to worry about. There is the potential for a good life for her there if she chooses to avail herself of all it has to offer.

I've got it set up pretty much hotel style where she just signs for things and it all gets put on one monthly statement, one copy to me ,one copy to her finance boys who pay it after I approve. She will never have to see it. So as long as she is on campus I don't have to worry about her losing a checkbook or weird amounts of cash. They drive her around to appointments and whatever else she wants, so that gets her off the road too.

I also got in touch with the corp my father used to work for and talked to them about the problem with no piece of paper being safe around her and was trying to work it out where I would get all the paperwork at my home and if something needed to be signed, I could send it to my notary and have them take just that one thing to her home and handle it the rest of the way for me. No dice from the pension folks.

I'm not and don't want to be full POA unless she is incapacitated medically, it's a dignity thing, I don't want to have her declared incompetent until I really have to. So they (Boeing) have a nifty little work around where I can do just a corporate POA so that I control all of the things around pensions, medical, etc for that company only. She still gets to be "independent", but I can take care of quite a few of the issues for her.

I got that all officially signed and sent off yesterday, huge sigh of relief for me.

So now of course her car is officially dead, and the AC which I tested fine the day before I last left has also bitten the dust. It's pretty hot here and guess who is using the house as temp lodging until it sells?

Slowly, very slowly, things are starting to fit into place. Two more days to get her unpacked and take care of a couple other meetings and I get to drive home Saturday (and listen to another audio book, life saver), then I get my own life for a couple of weeks which I hope will involve watching my new seedlings take off in the garden!

[Kelt]

Hey Tex, check your PM.

[TruTexan]

Hey Kelt, thanks.

Also, I'm glad you've gotten everything set up for your mom, it's been an ongoing process I'm sure. I hope she enjoys her stay there and finds a lot of new friends she can talk to , gather with, and play games, etc.
Here's to our back surgeries buddy. I wish you well in yours if you choose to do it. Me, I'm going through with mine, it's finalized for the 18th June, a day surgery if all goes well from what the nurse told me. I see the doc 15th June and he'll talk to me about it more then and explain it all to me.


I wish all the care givers stress free times to come.

[TruTexan]

It's going to be an ongoing emotional struggle for me to make final decisions about what to do about my mom. A part of me wants to completely walk away because she's toxic to me and the guilt lies in me for thinking about leaving her behind because she's my mom and the only parent I have left that's living, even though she treats me badly.
I hate being in this position, it's tearing me up inside.

[TruTexan]

My younger sister that lives in TN that financially takes care of my mom, finally got a hold of her via phone and she talked to mom about her behavior towards me. She told mom under no circumstances should she ever lay hands on me again. That if she's that angry, she needs to stop yelling and wait for a time when she's alone to do all that screaming and yelling, etc. And to stop pushing my buttons and that I wouldn't respond to her and feed into her bullshit.
She also told mom that she wouldn't have taken her to the doctor the next day either, after her behavior like that. That I had the right to say NO and not do it. That I had the right to tell her I wasn't going to help her anymore if she kept acting like this, that it's a bad relationship she's building with someone that is her child and that loves her enough to stay here near her and give up my life plans to take care of her when she needs my help. What a way to treat me like that. And that she was so wrong for acting and behaving like that and that she knows if the roles were that she was here that mom would act the same way towards her.
And told mom to call me and apologize because she was very wrong for doing things like that all the time and it needed to stop and she needed to go see someone because she's very bitter and angry about her life and that her children have to help her make it through every month.

Anyways, mom called and I made her wait to talk to me for 3 more days, after a full 7 days of not speaking to her already. She apologized and told me she called and got medicaid to help her get to her dr. appts. every time she needs to go and that it was free. I was relieved because she always has a habit of trapping me in the car while driving and starts yelling and screaming and then it turns into a full blown fight with words between us and my ptsd and anxiety runs amock when she does that, WHILE I'M DRIVING.
Thank goodness I don't have to drive her now. Whewww what a damn relief.

I'm still not sure if I'm going to move away or not and fully walk away. I need to talk to my therapist and my case manager to make sure I make sound decisions because I don't trust my own decision making process when I"m stressed the hell out like I've been this past week and ongoing.

Thanks for everyone's pm's and words of encouragement and support on my rep comments as well. I appreciate every one of them. It's nice to know I'm not alone in this mess and that there's people in the world that actually care about what I"m going through. So Thank you all again so much from the bottom of my heart.

[Kelt]

Well folks, after three days of mother being bat-shit crazy, I've got her moved.

She's got her things, she's in a place I consider to be much safer, and she has little to worry about. There is the potential for a good life for her there if she chooses to avail herself of all it has to offer.

I've got it set up pretty much hotel style where she just signs for things and it all gets put on one monthly statement, one copy to me ,one copy to her finance boys who pay it after I approve. She will never have to see it. So as long as she is on campus I don't have to worry about her losing a checkbook or weird amounts of cash. They drive her around to appointments and whatever else she wants, so that gets her off the road too.

I also got in touch with the corp my father used to work for and talked to them about the problem with no piece of paper being safe around her and was trying to work it out where I would get all the paperwork at my home and if something needed to be signed, I could send it to my notary and have them take just that one thing to her home and handle it the rest of the way for me. No dice from the pension folks.

I'm not and don't want to be full POA unless she is incapacitated medically, it's a dignity thing, I don't want to have her declared incompetent until I really have to. So they (Boeing) have a nifty little work around where I can do just a corporate POA so that I control all of the things around pensions, medical, etc for that company only. She still gets to be "independent", but I can take care of quite a few of the issues for her.

I got that all officially signed and sent off yesterday, huge sigh of relief for me.

So now of course her car is officially dead, and the AC which I tested fine the day before I last left has also bitten the dust. It's pretty hot here and guess who is using the house as temp lodging until it sells?

Slowly, very slowly, things are starting to fit into place. Two more days to get her unpacked and take care of a couple other meetings and I get to drive home Saturday (and listen to another audio book, life saver), then I get my own life for a couple of weeks which I hope will involve watching my new seedlings take off in the garden!

Eight days.

I got a call today from one of the campus ministers (she's an atheist, that's a whole other story) who met her today while she was out walking on the grounds. She got turned around and was trying to orient herself by local businesses, which she does well, and did exactly what I told her to do: when you pass someone while exploring smile and say hello, they may be nice or grumpy or you could make a new friend. Hey, it works for me...

Anyway, they struck up a conversation and whatever transpired led him to look up her contact number and give me a call. I think it'll be alright, I explained about her husband of 60 years recently dying and that she just moved in a week ago and was under a lot of stress.... I appreciate that he was concerned and maybe simply taking an interest, but I can't have this go sideways, not yet.

ETA: Three hours later when I talked to her on the phone and asked how her daily walk had gone she had no recall of meeting anyone. In two or three days she'll think of it, maybe.

I really thought this was under control and I could go back to portions of my life for a while. I'm going over week after this but it was to be the last interval visit for a while so I can get some things done at home while she adapts. I am calling her everyday for now for a while and she gets that if I just keep a regular visiting pattern she will not grow into her new life and will just wait for the next time I show up. She also knows and is seemingly okay with the fact that at some point very soon I have to do a medical thing that will possibly clip my wings for several months.

I am so worried that they will ask her to leave because of cognition/memory problems. I am still working with her Dr to look for other causes beyond the normal altzheimers screenings, she just had another test today, for carotid artery blockage. I meet with her Dr next week to go over results but I don't think that's it. I'll ask for a referral to a neurologist but don't know what else to do. I couldn't even get a tour of the really good memory care facility without a diagnosis.

Grief is hitting her really hard now that so many of the other distractions have been removed. I don't think there is anything I can do besides let some time pass and just be available to talk to if she wants. The minister was very nice and is also a grief counselor so he may check in on her a bit. I just really need this situation to hold together for awhile, since I am pursuing this medically and had her checked before we moved her in, I think it's safe, but what next? :thinking:

[TruTexan]

Well the bickering and bitching and nagging from my mom seems to be quieted down after her blowup earlier last month. My younger sister stepped in over the phone and backed me up. Mom is now having Medicaid take her to her appointments with her doctors.....we'll see how long this lasts.
And, she's got an attitude towards me that just makes me feel like she doesn't care about me honestly. She doesn't want me to help her, so I"ve told her just to call me if she needs anything but she's being stubborn and tells me she won't call me. I am just stepping back, letting her do her thing, and go from there. We'll see how things go soon.


Take care everyone and I hope things are better for your mom, Kelt.

[SelfMadeMan]

My wife and I are licensed providers, and have had the same woman with us in our home, for 9 years. Her diagnosis is frontal temporal dementia. In the time we have had her, she has gone from walking independently, and helping feed herself to being in a hospital bed full time requiring full care, and no longer "tuned in". She has been non communicative since she came to live with us, but she used to smile and make eye contact and interact a little. It's been sad to watch her withdraw further and further over the years, and the work has gotten more and more stressful as well. It's also been rewarding, and I know we've taken wonderful care of her. We have also gotten close to her husband and now grown children. We're retiring from this work as of August 1, and she will be moved to her next home or facility, and I've struggled with the very different emotions of relief and guilt. I didn't expect the guilty feelings I guess, but the family loves her being with us. Now that our kids are all grown and out of the nest - we want to have an easier, simpler life. So in August we're moving into our beloved motor home full time, and will be living on the Gulf of Mexico! It's a dream we've had for over 10 years and it's so crazy that it's actually happening. I'm not sure I'll know what to do with myself after all of these years being responsible for another human being 24/7!

[Kelt]

I just saw a video that is so exactly like what it's like to deal with my mother it both cracked me up and made me want to cry a little bit.

Dotty sends a text (https://vimeo.com/128544536) < It's vimeo so I can't imbed it, but it's worth a watch. Apparently it's winning all kinds of awards, so it's hitting a nerve with folks. It's really quite sweet.

It's also why after about three days of this I want to strangle her just a bit. It's not her fault, but it's maddening if you aren't there yet yourself. Then of course when I go home I want to strangle myself for not having quite enough patience...

[MsTinkerbelly]

I just saw a video that is so exactly like what it's like to deal with my mother it both cracked me up and made me want to cry a little bit.

Dotty sends a text (https://vimeo.com/128544536) < It's vimeo so I can't imbed it, but it's worth a watch. Apparently it's winning all kinds of awards, so it's hitting a nerve with folks. It's really quite sweet.

It's also why after about three days of this I want to strangle her just a bit. It's not her fault, but it's maddening if you aren't there yet yourself. Then of course when I go home I want to strangle myself for not having quite enough patience...


I have taken care of MANY people with varying degrees of memory loss/dementia/alzheimers, but i have never experienced it in my own family. I have watched the effect of these diseases on the families of my residents, and i have seen the tears of frustration and loss on heir faces.

I don't have any magic words that will fix things, or bring back that person who used to take care of you...but you have my prayers for strength and patience while you deal with this tragic situation. (f)

[EmJay]

I don't like the term "caregiver" when it comes to me and my dad. So I prefer to just say were hanging out. We've been hanging out for 4.5 years now. He has ALS and for the last 2-3 years he's been fully paralyzed and requires 24/7 "hangouts." I spend days with him while my moms at work and she spends nights. It's never a guarantee when my mom will be home as she is a manager of a bank so some nights she doesn't get home till late. His breathing isn't great or even really good so we always make sure 1 of us is with him, it's too scary to leave someone else who doesn't know the breathing/eating routines he has. All of this kinda makes it so I am not really capable of being in a relationship. Most plans I make get cancelled because I am needed here when my mom may work late or simply because I'm exhausted at the end of the day. I don't have a whole lot to offer anyone because he is my number 1 priority and will be for the rest of his life. And when I think of dating later I can't help but think I will be so broken when he's gone that I will be so much more than a hot mess. Similar to dead inside maybe? My thoughts right now are.. If I'm lonely right now... What is it going to be like when he's gone. That scares me.

[Tommi]

Late stage Alzheimer's has taken her memory.

Now, it is taking her smile, her legs, her light is dimming. Her life is day to day.
My wife watches as her mother sleeps, expecting to see her chest rise and fall for the last time, her breathing stop, as she slips away in her sleep.

The last year has been a quiet decline for both her parents, after caring for them at home for 10 years. Her Dad is hanging on, loving his wife of 62 years, as they toddle to bed together every night.

It is life ebbing away, and taking it's toll on my love. Finally, two of her six siblings are offering her support. all out of state, Saying they will help. They will help find a place for them.

Will they step up to the plate, after 10 years, as their parents must move on and all want them to be together. Can we fly them from California to Michigan, both on oxygen, and relocate these febrile folks where the big family says they will care for them, visit them, and know it won't be for long.

The hourglass is running out.

[Kelt]

I'd think that 3 months after my father died and a month after moving my mother things would be getting easier. A couple of days ago I got a packet from the attorneys, I have four tax returns to do. :blink: One joint for when father was alive, one individual for my mother, one for the estate, and one for the trust. Then of course I have to do my own which is every kind of messed up from a cross country move in 2014 (CA thinks I still live there?) and three "event" changes in health insurance over the last year. Sure I'd be happy to do full asset and inventories from the date of death which I didn't do at the time because I didn't know it was needed (What? I've never been an executor before!) and all the companies I need to get info from have to use third parties to get access to their own information on an "as of" date.

Which means power of attorney.

I got a corporate POA a couple of months ago to take care of mothers pensions and medical needs. Of course they spelled my name wrong and that took a month to fix. Now I have a full POA for everything and have been sending that out since most places have a legal departments that take 6-8 weeks to process. Naturally, I didn't notice that this POA also has a spelling problem in that it adds a middle initial, one that's not mine. I missed it and only found out when the first brokerage called me to tell me my information request was denied from the mismatch. Seriously? Spelling errors are costing me weeks/now months of lost work. It's only a 14 hour drive to fix this. :blink:

But that's okay, I only sent out 12 of them. :badmood:

[Kelt]

I just got an email from one of the people I have working at my folks house. The estate sale begins tomorrow morning. I don't have any attachment to the house, I'd only seen it twice before my father's stroke. They only had it 8 years.

But, the stuff inside, I really didn't go through it much, what would I keep? Furniture? Full up. Art? Most of it paintings done by my grandmother who died when I was 4, her life in Hawaii, I only remember (vaguely) one visit even though I gather she travelled with us quite a bit. Knick knacks from the global travels I wasn't a part of, cool stuff, but not my memories.

Most of the things from my childhood were the regular things, the good china and silver from holidays, they were posh at the time but nowadays so many people in their 80's are dying and there isn't much value to them on the market and nobody entertains like that anymore. Certainly not me, and my folks hadn't used those things for 30 years or more. It's just a little weird to know all those things won't be somewhere in a cupboard anymore. If it's this strange having only the early part of my life erased in a distant sale, how weird is it going to be for my mom?

It's 60 years of her life and maybe all of her memories. She's having a hard time remembering much without the visual queues around her. She has some things, it was hard to convince her to take anything, in the midst of her grief. She got so mixed up when it was time to pack, I gave her two weeks, she kept sorting things for the sale (something I'd told her not to since others would) and not thinking about the things she would want for herself. In the end I had to figure out what one little old lady in a one bedroom apartment would need and pack it in two days. I feel badly that I couldn't let her have longer to cull through her life and pick through the small things. But she wouldn't, and now it's really too late.

I'm driving the 400 miles back over on the 9th for a week of meetings with guys in suits, signing off the papers to list the house for sale, and taking my mother up on Mount Rainier (where her parents met) for a day trip and spreading my fathers ashes. Illegally.

There is no family, my mother doesn't know anyone anywhere.

I feel like some kind of monster for doing this to her. (w)

[JustLovelyJenn]

I think I found my tipping point today. My son is on new medication, that isn't really working at all. The whole summer has been a marathon of yelling, arguments, refusals, and meltdowns. I did my best to remove my daughter from it by sending her to camp, her grandmothers, her friends... as often as possible. That left me and my 11 year old son with autism to try and stumble through the summer. I still had things to do, obligations to fulfill, even though I wasn't at work. I walked out of stores when he wouldn't stop arguing, watched him closely to catch when he was trying to shoplift, and tried to juggle him in one hand and the rest of the world in the other.

He's decided he hates me when he's mad. He tried to run away this summer. He slams his head against the floor, or a wall, or a book and tells me he hopes it makes him go away. I tell him I love him, but his behaviors worry me. I hug him and cuddle him whenever I can, but still try to be strict about the rules.

I just lost it today. Today the curtain rod was torn off the wall. Just one more in the list. It was added to holes in the ceiling, broken door frames, damaged vacuums, stained couches and carpets... and I lost it. I called his father for support, suggestions, anything... and the response was... "well watch them closer, just take things away, I don't know what to tell you, I don't let them do that to my house."

I curled up and cried so hard for almost an hour on my bed. The boy was in the bathtub... and my daughter was trying to finish the chores I had been asking them to do all day on her own... finally. And I cried, and I'm still crying. I just can't do it all on my own. I'm tired of the people who are supposed to be my support telling me how I must be doing it wrong. I'm tired of not being given time for my own emotions, my own needs, my own anything.

I'm trying to do this on my own, I'm working full time, I'm going back to school to increase my earning potential... and my grandmother just died... I'm sorry I stayed in bed till 8 am... and the kids can't monitor themselves that long... but something has to give... I just don't know what to do anymore.

[TruTexan]

Last weekend over the holiday weekend, mom had an episode of pretty good swelling in both her ankles(not overly swollen but enough), the right one broke open on the skin with a tiny hole and started seeping clear fluid. I took her to the doctor Tuesday last week when the doctor opened her office after the holiday. Dr. said could be cardio or vascular issue, but she wasn't sure what the hell was causing it. So I asked if one of mom's 4 blood pressure meds she's taking could be causing her feet and ankles to swell and so she checked that and lowered one of them that could and has her taking it at night instead of day time. I then this week on Monday called my mom's vascular surgeon's nurse to talk to her about what happened and for her to talk to the doc to see what we should do or if he wanted to see her. The nurse called me back and said YES he wants to see her and he didn't know what happened to cause it and also wanted me to make an appointment to take her in to see her cardiologist as well. SO, I did. Taking mom to see vascular surgeon on Sept. 22 for checkup and to see her cardiologist on Sept. 28 for check up as well and to discuss what's happened. It hasn't happened again but that doesn't mean anything. Her feet and ankles swell everyday but something caused more swelling that usual and something caused the skin to tear open a tiny hole in her leg and leak fluid. So, I hope it's just from her medicine and maybe one of them will change it and that it's not a blockage somewhere in her leg (which she's already had 3 surgeries done on her artery for blockages) or a blockage around her heart(which they found one late last year where her 30 yr old heart bypass graff had collapsed and so they put a new stint in it. She's had 2 bypasses on her heart done 30yrs ago, I just hope it's not another one gone bad). I'm worried but I can't tell my mom that, she'll freak out. She knows I called her dr's about what happened and said she'd go in. Now my younger sis is worried too and is glad I'm taking her in to check about it.
Let's hope and pray for the best result. Thanks for listening.

[Vincent]

***Trigger Warning - Topics of emotional abuse, violence, and healing are below***

I was my mom's wild child. I am her youngest and the only one she raised until a teenager (this part is an super long story). I came back home when I was 28 and my son was four years old. I had no intention of sticking around that long. Well, 12 years later, here I sit. I have been to sole caretaker of my mother for the last four years. I have a brother (12 years older) and a sister (seven years older). Neither of which could take the time to come over and hang out with my mom, so I could take care of me. Neither of them seemed to care about what was happening with my mom. I would contact my brother, who only lives three miles from us, every time we ended up in the hospital. The response I often encountered was that it was my fault because I wasn't taking good enough care of her. He would yell at me and tear me apart. I endured this because he was her son, and I didn't want him to leave her, too. My sister left us ten years ago because of me, or so my mom says.

It seems that a lot of it is my fault, but I have done everything I could do that she would allow me to do. I tried to get her in home physical therapy, which she would kick out the physical therapist and never do any of the exercises. I tried to get a nurse to come over and be with her, so I could go just have a minute to breath. She would kick the nurse out, too, and I often found myself walking the people downstairs and apologizing profusely. She would yell at me that I don't need any time for me because she didn't take the time when she was raising me. I can only understand the frustration and fear my mom felt in marginal ways, but I tried to connect with her. I tried to make things better for her.

She has been in and out of nursing homes and the hospital, but this last jaunt into the hospital and the nursing home broke me. She has a history of leaving without doctor's consent, so when she called me two weeks ago to come and get her, I told her no. It broke my heart, and I sit here and cry now because of what has resulted from that one two lettered word. It was then that everything of the last fours years, honestly my whole life, came tumbling down out of my head and heart into my mouth. It was in those few minutes that everything I could never voice because I couldn't ever admit to myself was true. She threatened me through intimidation, "You better come get me." I still said no. She threatened me through guilt, "If you don't come get me, I'll call your brother!" I told her to go ahead and do that. Then she started to cry, "You don't love me." I said that I did and that is why I am saying no because I cannot take care of her the way she needs and that was me showing her that I loved her. She got angry again and told me that she was moving out. I said that is fine and that all of her things will be packed before she could get here. She hung up on me. I think I started to grieve then. I think in those quick moments I realized I just lost my mom because I figured it all out. I was the adult child of an emotional abuser, and I made the conscious choice to no longer be that child. I lost my will and desire to take care of her. I lost the guilt and shame of not being enough.

She called back later and tried to negotiate. She suggested that I move my son out of his room, so she could be in there. Before, she was in the living room. I laughed. I asked her who on earth asks their child to put them above his or her own child? She again got angry and hung up. It got to the point that I didn't want to answer my phone when she was calling. I felt like a horrible daughter and human being.

Two Fridays ago, I packed all of her things and she came with my brother and his wife to get them. It did not go well. My brother got violent with me and my son stepped in to defend me. My mom told me it was my fault that he put his hand on me.

It has been over a week since she has been gone. I have thoroughly cleaned the house, blessed it, but I still cry. I have missed worked and I keep looking for someone to tell me that I have been wrong in all of this because that is what my old tapes tell me I should be hearing. I wish I missed her. I feel bad for not feeling bad enough. I feel like a dick because I know that my life will better without all of the drama and heartache.

Lillith,I just wanted to say I had a similar situation sort of,my relationship with my mother was not good,ever,I wont go into it,but I ended all contact with my mother nearly 2 yrs ago,and it was the best thing Ive ever done,I chased a woman all my life who only ever hated me,I so badly wanted her to love me,I must be bad right,if my own mother hates me.?
But now it was the best decision I made,to look after me,I'm new here,but I think the threads here are so real,so thank you everyone for your honesty and openness.

[TruTexan]

OK enough for today of my mom. I wanted to strangle her today because she wasn't paying attention to the cardiologist telling her NO SODIUM OR SALT in her food anymore and Then after seeing him, I took her to a pretty darn good and local bbq place because she hadn't had any in a very long time. She was just griping about everything. OMG,That is when I was about to lose my cool. I had to walk out after eating and take myself out by the car and just light up a smoke. She stresses the hell out of me and I hate it, then I want to strangle myself because I can't seem to manage my stress level around her and she aggravates my ptsd so badly. I'm still tight and stressed and just got home, so I'm going to try and relax now because Tomorrow I have to take her BACK to the Cardiologist in the afternoon for an ECHO on her heart. He also took her off of 1 of her blood pressure medicines named amlodipene (sp?) because it can cause swelling and then wants to see her after the ECHO is done but 2 weeks later. I'm trying to be the good daughter and caring daughter I was raised to be but it's taking it's toll on me to do it. She honestly grates my last nerve of the day at times. And THAT makes me so upset with her and myself. OK that's enough of my ranting. sorry.

[Kelt]

Costs for Dementia Care Far Exceeding Other Diseases, Study Finds (http://www.nytimes.com/2015/10/27/health/costs-for-dementia-care-far-exceeding-other-diseases-study-finds.html)

This. Just hired two assistants for mother this week, fortunately she doesn't need much right now. The writing is on the wall though, this will only get more expensive, never less than it is now.

Medicare doesn't cover sh*t for this because it isn't "medical".

:thinking:

[Zimmeh]

I started caring for family members when I was 18 years old. A month after my 19th birthday, my grandma lost her battle with lung cancer. After I graduated from high school, my dad was diagnosed with heart problems. I took care of him until I was 28 years old, when he passed away from heart and respiratory failure. Nearly thirteen years later, I still have an issue with his death. It has caused me to suffer from depression and anxiety.

Zimmeh

[ksrainbow]

https://caregiver.org/taking-care-you-self-care-family-caregivers


ks-

[Kelt]

Things have actually been going along okay for a few months now. Mom really likes the place she is living and the people there. I'm relived to know that she has a car and driver (so she's off the road) is eating well, and has social support.

I've hired a couple of periodic "helpers" for things that her lack of short term memory impacts, and that is going well; also we are figuring out how to have a relationship with each other.

I am getting her caught up on deferred maintenance with all the medical folks and part of that was a mammogram that she'd forgotten about for four years. That led to them wanting more images because of tissue changes. No surprise, she's 84 after all but they wanted to be careful because she had breast cancer about 25 years ago.

Well, this morning they called to say they want a biopsy too so I set it up. I told Mom it was probably just old scar tissue or something so that she won't worry too much until we know what is what, but between you and I; I really hope it isn't back. This is a family that doesn't question that we die of cancer, just which variety.

2015 already had way too many "events", neither she nor I need to have anymore for a while.

I hope she's okay, we'll know more in a few days... :thinking:

[clay]

<snip>



Well, this morning they called to say they want a biopsy too so I set it up. I told Mom it was probably just old scar tissue or something so that she won't worry too much until we know what is what, but between you and I; I really hope it isn't back. This is a family that doesn't question that we die of cancer, just which variety.

2015 already had way too many "events", neither she nor I need to have anymore for a while.

I hope she's okay, we'll know more in a few days... :thinking:

(((((((((((((((((((((Kelt & Mom)))))))))))))))))))
I totally agree on "no more events for you two this year!!!

Please keep us posted and know you & she are in my thoughts. Will offer you both up to Universe for good news. Hang in there buddy! :vigil:

[TruTexan]

Hey Kelt,
I hope and pray your mom's biopsy is normal. I know she and you both have had a rough going of things already. Please keep us informed, I'll keep your mom and you in my prayers.

[Kelt]

Things have actually been going along okay for a few months now. Mom really likes the place she is living and the people there. I'm relived to know that she has a car and driver (so she's off the road) is eating well, and has social support.

I've hired a couple of periodic "helpers" for things that her lack of short term memory impacts, and that is going well; also we are figuring out how to have a relationship with each other.

I am getting her caught up on deferred maintenance with all the medical folks and part of that was a mammogram that she'd forgotten about for four years. That led to them wanting more images because of tissue changes. No surprise, she's 84 after all but they wanted to be careful because she had breast cancer about 25 years ago.

Well, this morning they called to say they want a biopsy too so I set it up. I told Mom it was probably just old scar tissue or something so that she won't worry too much until we know what is what, but between you and I; I really hope it isn't back. This is a family that doesn't question that we die of cancer, just which variety.

2015 already had way too many "events", neither she nor I need to have anymore for a while.

I hope she's okay, we'll know more in a few days... :thinking:

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now. :watereyes:

[TruTexan]

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now. :watereyes:

I'm truly sorry to hear this Kelt. I wish there was more I could say or do. I'll definitely keep you and your mom in my prayers. Hang in there.

[DapperButch]

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now. :watereyes:

Oh, my friend, I'm so sorry. Day at a time. All you can do is what you can do. One foot in front of the other. Repeat.

I'm here for you, pal.

[clay]

Kelt....I am so sorry you are having to endure this on top of all else and am sending you & mom both hugs. I will keep you both close in my heart & wishes for a good outcome. Take care my friend!!!





And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now. :watereyes:

[Kätzchen]

It seems like I have been a caregiver since as far back as I can remember. I've cared and given care not only to both my sons, who've both had they're own sets of challenging issues, but was caregiver and chief overseer of my siblings, at such a very young age -- up until the time I just couldn't do it anymore.

This year marks another time in my life where I've got my mother who's got herself painted into a proverbial corner, she's elderly, can't take it anymore the caregiver role she's held actively all her life, both professionally as a nurse and as chief overseer of three siblings of mine who have had challenges most all their lives, much like the scenarios both my son's face, except stark racial differences in the case of my sons, rather than as not so visible in the case of my three siblings.

I hate secrets. I'm not good at keeping secrets. My mom told me something tonight and told me to not say a word...to the person, my sibling who is culpable of what she's said to me.

I guess where I'm going with this is that care giving isn't always a physical concept. That care giving roles can wander into the non-physical realm. Which is a tricky place to be, when faced with not wanting to keep secrets....which in the case of my mother, keeping secrets is valued highly. I can't keep secrets. To me, that's allowing unhealthy cycles of behaviors the latitude to become more entrenched in abuse based behaviors and in styles of communication.

I can't be a party to keeping secrets. It's not okay. To me, it's not healthy. It's a toxic part of cycles of abuse and in order to break the cycle of both abuse and it's more silent role in care giving, as it's been in roles of care giving for both my mother and I, then I have to find a way to effectively not be party to this kind of behavior, which finds a comfortable home in the way care giving has always been practiced between my mother and I and with my siblings and my sons.

I feel so incredibly stressed out. I've got my mom's dire situation on one side, my son's dire situations on another side, then there's me. My own dire situation which based in physical and mental health, my own emotional well being is at stake.

And all I can do right now, is make sure I'm taking care of me FIRST by getting enough food to eat, enough rest and deep sleep, and being as thoughtful as I can where my own sanity is at stake.

I've been shoring up my boundaries because it takes a lot of energy to make sure I give myself the level of care I deserve and need to remain healthy and cognizant of all that is before me, each day of life I am grateful to have.

I have no idea what tomorrow will bring, but today I did my very best at caring for me.

One day at a time.

Some days, it's one breath at a time.

Living moment by moment, believing in my ability to care precisely for me, is probably one of the best things I've done for myself since I came to realize how important it is for me to take care of me.

:bouquet:

[Gayandgray]

Hey there, I can relate to your situation as I'm a caregiver to my spouse, plus work fulltime as a caregiver. Finding ME time can be hard! I'm on a caregiver support group online that has really helped me a lot. There are good days and bad days. Like you said, take one day at a time and some days (like today) one breath at a time, too! If we don't take care of ourselves then we will get burnt out.

[Kelt]

My luck seems to be holding, we had moms surgical consult yesterday and the surgeon is going to pull some extra hospital time so that she can have her surgery on Monday morning. This helps me out a lot with extra travel.

For some reason I have been equating in my mind recovery from a mastectomy as being similar to top surgery. Apparently not, looks like it's going to be pretty easy for her. Then of course it's just back to hurry up and wait a few days for pathology till we figure out what's really going on.

Here's hoping for no complications…

[DapperButch]

My luck seems to be holding, we had moms surgical consult yesterday and the surgeon is going to pull some extra hospital time so that she can have her surgery on Monday morning. This helps me out a lot with extra travel.

For some reason I have been equating in my mind recovery from a mastectomy as being similar to top surgery. Apparently not, looks like it's going to be pretty easy for her. Then of course it's just back to hurry up and wait a few days for pathology till we figure out what's really going on.

Here's hoping for no complications…

Hi, Kelt. My understanding is the difference is that they take the lymph nodes out with a standard mastectomy. I don't understand why it would be easy?

On the other hand, in the scheme of things, top surgery isn't really bad. Depends on what you are comparing it to, of course.

You and your mom are in my thoughts (like you are every day, I am just too shitty of a friend to reach out to you. :( ). I love ya, brother.

[TruTexan]

My luck seems to be holding, we had moms surgical consult yesterday and the surgeon is going to pull some extra hospital time so that she can have her surgery on Monday morning. This helps me out a lot with extra travel.

For some reason I have been equating in my mind recovery from a mastectomy as being similar to top surgery. Apparently not, looks like it's going to be pretty easy for her. Then of course it's just back to hurry up and wait a few days for pathology till we figure out what's really going on.

Here's hoping for no complications…

Hey Kelt,
I'm hoping that everything turns out for the best for your mom and for her recovery. I'll keep you both in prayers as I do often. Thanks for keeping us updated.

[JustLovelyJenn]

I haven't posted in here in a while... so I thought I would give you all an update.

My stress levels are pretty high these days and on the rise.

My son lost his psychiatrist, we tried to get a new one out of town and they declined after a single consult because they felt that we were too far away to adequately manage his medications. He did make some med changes at our consult and then recommended a new local psych. The state medical denied the new medication the second month, along with all but one of his other meds... it took 3 weeks to get that straightened out... all of which he went unmedicated. We then met with the new doctor who is making yet another med change, which was almost denied again.

He is having so much trouble this year I am just at my witts end. His defiant behavior is off the charts and there is nothing I can do to get him to comply. Bribing, threatening, discussion, negotiation... none of it works. If it doesn't directly benefit him he just wont do it... and hes now too big for me to force the issue. Hes been becoming increasingly aggressive towards his sister. From pinching her butt, lifting her skirt, blocking her way so she can not leave a room... and even threatening to ruin her violin with a kitchen knife. I am so glad I made the decision for her to move to her fathers for the time being. She doesn't need to be exposed to this every single day.

The aggressive behavior has also become a problem at school. We have been in for multiple meetings over the last semester and changed his behavior plan more than once. He has stolen a teachers cell phone (he had it for 4 days before anyone knew), locked his teacher and students in the classroom with him and wouldnt let anyone in or out, and made bodily contact with a few students (shoulder shoves, pushing, etc) hard enough to hurt them...

After a lot of discussion and some serious sacrificing on the part of my family we decided to take him out of school and enroll him in an online schooling program. My mom is coming to my house during the day three days a week to run his schooling, and the other two he will stay with my brother. I will work with him on school work one day during the weekend when I am off work.

I feel exhausted. All the time... and trapped in this house.

It doesn't help that I am also dealing with some health concerns of my own that are keeping me down a lot so I cant even be up and moving around to compensate for any of this...

Anyway... I know that was kind of a rant... thats where I am right now...

[TruTexan]

It's not easy dealing with things on a daily basis, Jenn. I understand you need to talk about it. I'm so sorry that you're dealing with all this I wish there was more I could say or do for your situation. I know you must be so stressed it's not even funny. Please try to take care of YOU whenever possible because if you dlon't then your no good to anyone else. Remember, you can always come here to vent or whatever. I'll say prayers for you and your family. God Bless you Jenn.

[Kelt]

Hi, Kelt. My understanding is the difference is that they take the lymph nodes out with a standard mastectomy. I don't understand why it would be easy?

On the other hand, in the scheme of things, top surgery isn't really bad. Depends on what you are comparing it to, of course.

You and your mom are in my thoughts (like you are every day, I am just too shitty of a friend to reach out to you. :( ). I love ya, brother.


Since we're not going to do anything reconstructive there won't be any binding post surgically, and apparently she's going to have pretty much full range of motion in her arm within a few days. Of course this all depends on how far they have to go with the lymph nodes, but it's expected to be a pretty smooth recovery. We are going to do some radioactive tags for lymph node mapping during the surgery to try and get all of the bad ones while sparing as many of the good ones as possible.

Then of course is when the fun begins. Three or four days after surgery we should get the pathology and then it's onward to oncology. Mom and I have been having some pretty good talks, (which she remembers for about an hour), about how far she wants to go with treatment. If the treatment can be handled with something like hormone blockers, a possibility, then that would be fine. If they recommend extensive or harsh chemo, she doesn't want to do it. She would want me to switch her to hospice comfort and care.

My main job at this point is to get her out of the hospital as soon as possible, it shouldn't be more than one night, and then to make sure she doesn't end up in a nursing home. After watching my father die in one of those last year, there is no way I'm going to let that happen to her.

To say I'm having a hard time with all of this would be an understatement. The "hurry up and wait" is the hardest part, there's just no way to know how this is going to go until we have the pathology report post surgically.

Surgery tomorrow morning.

<<<< Would like to crawl into a hole and pull it in over myself.

[easygoingfemme]

Kelt- the radioactive marking is a really great progression in this type of surgery. It certainly spares a lot of the lymph nodes, where it used to be that all would be taken out. However, the process of that surgery can create a fair amount of discomfort and decreased range of motion. Also depends on how the surgeon goes in. I don't know if your mom is having a mastectomy or lumpectomy but each would mean a different way of going about it. She will likely be given recommendations on restricted movements for a week (no raising arms over shoulder height) until a post-op check where she can be given exercises to increase range of motion and loosen up scar tissue. I hope the pathology comes back in your favor with clean lymph nodes and more.

My very best to you and your mom tomorrow and in the coming weeks.

[DapperButch]

Since we're not going to do anything reconstructive there won't be any binding post surgically, and apparently she's going to have pretty much full range of motion in her arm within a few days. Of course this all depends on how far they have to go with the lymph nodes, but it's expected to be a pretty smooth recovery. We are going to do some radioactive tags for lymph node mapping during the surgery to try and get all of the bad ones while sparing as many of the good ones as possible.

Then of course is when the fun begins. Three or four days after surgery we should get the pathology and then it's onward to oncology. Mom and I have been having some pretty good talks, (which she remembers for about an hour), about how far she wants to go with treatment. If the treatment can be handled with something like hormone blockers, a possibility, then that would be fine. If they recommend extensive or harsh chemo, she doesn't want to do it. She would want me to switch her to hospice comfort and care.

My main job at this point is to get her out of the hospital as soon as possible, it shouldn't be more than one night, and then to make sure she doesn't end up in a nursing home. After watching my father die in one of those last year, there is no way I'm going to let that happen to her.

To say I'm having a hard time with all of this would be an understatement. The "hurry up and wait" is the hardest part, there's just no way to know how this is going to go until we have the pathology report post surgically.

Surgery tomorrow morning.

<<<< Would like to crawl into a hole and pull it in over myself.

I'll be thinking of you and your mom, my friend <bro hug>.

[clay]

((((((((((((((((((((Kelt)))))))))))))))))))

You know I am with you on this...and send you user reps, but wanted to stand strong here as well.

This is no easy journey by any stretch of the imagination. The hardest part is on the caregiver...and the wait is really stressful.

The blessing is in that she can make her mind up even though she forgets after a bit. I think she is making wise decisions and you are able to support her in them.

Things will progress as they are supposed to, and I have really positive hopes for a good outcome for her. I send you energies for this journey....stay strong...and know I am always here for you....you are a wonderful

person....she must be so proud of you....hang in there my friend...blessings for mom & you...you both are in my heart & thoughts every single day...





Since we're not going to do anything reconstructive there won't be any binding post surgically, and apparently she's going to have pretty much full range of motion in her arm within a few days. Of course this all depends on how far they have to go with the lymph nodes, but it's expected to be a pretty smooth recovery. We are going to do some radioactive tags for lymph node mapping during the surgery to try and get all of the bad ones while sparing as many of the good ones as possible.

Then of course is when the fun begins. Three or four days after surgery we should get the pathology and then it's onward to oncology. Mom and I have been having some pretty good talks, (which she remembers for about an hour), about how far she wants to go with treatment. If the treatment can be handled with something like hormone blockers, a possibility, then that would be fine. If they recommend extensive or harsh chemo, she doesn't want to do it. She would want me to switch her to hospice comfort and care.

My main job at this point is to get her out of the hospital as soon as possible, it shouldn't be more than one night, and then to make sure she doesn't end up in a nursing home. After watching my father die in one of those last year, there is no way I'm going to let that happen to her.

To say I'm having a hard time with all of this would be an understatement. The "hurry up and wait" is the hardest part, there's just no way to know how this is going to go until we have the pathology report post surgically.

Surgery tomorrow morning.

<<<< Would like to crawl into a hole and pull it in over myself.

[Kelt]

I am happy to report that mom's surgery was quite successful. It went off without a hitch and the really great surprise was that most of the lymph nodes were already gone from her surgery 25 years ago we just didn't know it. My hope, confirmed as a possibility by the surgeon, is that that would have reduced the ability of the cancer to metastasize. It's still a waiting game for pathology and then oncologist, but at least there were no negative surprises during surgery.

After surgery? Never a dull moment.

Mom was pretty spun out with confusion afterwords, which I thought was going to be the case because she was in an unfamiliar environment with lots of things she didn't really understand. I thought we'd be OK for one night in the hospital but when I had to leave at 9 o'clock I was still afraid that she might wake up in the night and try to get out of bed to figure out where she was. I knew she wouldn't get far because her legs were tied to the bed with those things they put on to prevent blood clots . I had the staff set a bed alarm just in case so that if she tried to get out of bed and alarm would go off.

Well, she did try to get out of bed, got all tangled up in IVs and cords and things and took a fall. Fortunately she bounced instead of broke, (a small miracle given her osteoporosis), but she did manage to rip out her surgical drain. I got the call at 3:30 this morning to let me know what had happened and that while she was OKish, we would have to check in with the surgeon when he does his rounds to make sure I can still bring her home today. Like there's really any choice. What am I going to do, leave her there for another night? Have this happen again?

Obviously, I'm going to have to come up with something better for future field trips. I'm thinking the only way to handle this going forward is to get her a private room with somebody to sit up all night, probably me, to answer her questions when she wakes up so that she won't try to get answers on her own.

Oy vey!

I can go over there in a couple hours and see what's what. At least the surgery is done.

[Gayandgray]

My thoughts and prayers are with you! I know how hard it is to have a loved one sick. Hang in there!

[clay]

This is great news my friend...up until the fall...but also good news is no broken bones.

Those are compression hose to prevent blood clots....:).

Caring for an elder loved one is no easy feat with dementia thrown into the mix...but you are doing wonderfully well with being there for her...I am sure she appreciates you for that in her heart & is grateful for you....

Hang in there my friend....I am walking in spirit with you buddy....hugs to mom...keeping you both in thoughts & well wishes....thanks for the update....






I am happy to report that mom's surgery was quite successful. It went off without a hitch and the really great surprise was that most of the lymph nodes were already gone from her surgery 25 years ago we just didn't know it. My hope, confirmed as a possibility by the surgeon, is that that would have reduced the ability of the cancer to metastasize. It's still a waiting game for pathology and then oncologist, but at least there were no negative surprises during surgery.

After surgery? Never a dull moment.

Mom was pretty spun out with confusion afterwords, which I thought was going to be the case because she was in an unfamiliar environment with lots of things she didn't really understand. I thought we'd be OK for one night in the hospital but when I had to leave at 9 o'clock I was still afraid that she might wake up in the night and try to get out of bed to figure out where she was. I knew she wouldn't get far because her legs were tied to the bed with those things they put on to prevent blood clots . I had the staff set a bed alarm just in case so that if she tried to get out of bed and alarm would go off.

Well, she did try to get out of bed, got all tangled up in IVs and cords and things and took a fall. Fortunately she bounced instead of broke, (a small miracle given her osteoporosis), but she did manage to rip out her surgical drain. I got the call at 3:30 this morning to let me know what had happened and that while she was OKish, we would have to check in with the surgeon when he does his rounds to make sure I can still bring her home today. Like there's really any choice. What am I going to do, leave her there for another night? Have this happen again?

Obviously, I'm going to have to come up with something better for future field trips. I'm thinking the only way to handle this going forward is to get her a private room with somebody to sit up all night, probably me, to answer her questions when she wakes up so that she won't try to get answers on her own.

Oy vey!

I can go over there in a couple hours and see what's what. At least the surgery is done.

[Rockinonahigh]

Boy did I ever mess up tonight, Since I have been down with both my knees being so bad and my back issues as well just today I finely couldn't even stand up to fix a simple bowl of oatmeal this morning so I ended up having a couple pieces of left over fried chicken for breakfast. I tried to fix dinner and still couldn't do it with the pain I am dealing with so I called my son to bring home some kind of take out for dinner. Any way before he went to bed I ask him to make a pot of coffee being he brought a fresh can of French silk coffee.
The last I made coffee was last Sunday and haven't cleaned pot since so it really needed a washing out first. He said "why haven't you cleaned the pot out it's nasty" then proceeded to dump the entire pot upside down in the sink, I mean the whole contraption. At that point I just sizzled with my Aries temper then tore everything out of the dish washer threw it on the counter or where ever it landed then stuck the taken apart pot and all the dirty dishes in then turned it on. I have been doing the laundry, still fixing meals plus doing all else I could do to the point I couldn't do any more, I knew I was over doing it but things needed to be done. The crap about the coffee pot just hit me wrong.
My son has gone to bed before I could appologise for being stupid, so I wrote him a note saying I was sorry incase I didn't get up before he left to say before he left. I know we will get past this cause we never or rarely have something like this come up...this is his first taste of being a care giver even in the smallest way and my first ever needing anyone to be one for me, it is a hard adjustment for me cause I always have been able to do it myself.

[Gemme]

Boy did I ever mess up tonight, Since I have been down with both my knees being so bad and my back issues as well just today I finely couldn't even stand up to fix a simple bowl of oatmeal this morning so I ended up having a couple pieces of left over fried chicken for breakfast. I tried to fix dinner and still couldn't do it with the pain I am dealing with so I called my son to bring home some kind of take out for dinner. Any way before he went to bed I ask him to make a pot of coffee being he brought a fresh can of French silk coffee.
The last I made coffee was last Sunday and haven't cleaned pot since so it really needed a washing out first. He said "why haven't you cleaned the pot out it's nasty" then proceeded to dump the entire pot upside down in the sink, I mean the whole contraption. At that point I just sizzled with my Aries temper then tore everything out of the dish washer threw it on the counter or where ever it landed then stuck the taken apart pot and all the dirty dishes in then turned it on. I have been doing the laundry, still fixing meals plus doing all else I could do to the point I couldn't do any more, I knew I was over doing it but things needed to be done. The crap about the coffee pot just hit me wrong.
My son has gone to bed before I could appologise for being stupid, so I wrote him a note saying I was sorry incase I didn't get up before he left to say before he left. I know we will get past this cause we never or rarely have something like this come up...this is his first taste of being a care giver even in the smallest way and my first ever needing anyone to be one for me, it is a hard adjustment for me cause I always have been able to do it myself.

Why didn't he just clean the pot? It sounds like you have a lot going on right now. Hope you feel better soon.

[Rockinonahigh]

Why didn't he just clean the pot? It sounds like you have a lot going on right now. Hope you feel better soon.

My so is really sharp about lots of things but not at all in the kitchen, he is as lost as a goose. I had to draw a chart on how to load the dish washer, you wouldn't beleave how many ways he has loaded it and washed the dishes. I hope things get better to. T y.

[Gayandgray]

I'm curious if anybody here is a caregiver to their spouse/partner like me? I belong to an online support group that has been a lifesaver for me, but there are only like two other lesbians there caring for their spouses and they don't post often. Sometimes I feel like I'm the only lesbian around that has to take care of her older, sickly spouse. But I'm sure there are others out there somewhere? :koolaid:

[Brae Windsong]

I have been taking care of my spouse for about 8 years. She's been on Hospice for almost 3 of those. She has heart failure. My brother moved in about 5yrs ago and is a big help.
She stays in her hospital bed in the living room all the time, and I stay in my room.
The weight of long-term caregiving is enormous. I get very little time away. I did go see my kids in Sept to welcome my youngest grandson and I've scheduled a trip there for next week. I went back to college last year; so I get out of the house one night a week for class. Other than that, I'm here all the time.
I struggle with burnout daily. I see a therapist, but I haven't found a support group.
I would love to interact with someone about the stress of caregiving.
Gentle hugs to all the caregivers.

[Kelt]

Whew! Taxes.

Just short of a year ago in a huge karmic swipe, my father died on tax day. You had to know him to get that, but to say it was ironic is a major understatement in a Monty Python kind of way...

Today the E-file happened, 7 federal and 2 state tax returns filed and the only one of them that needed a 90 day extension (estate) was also completed. While I'm no accountant, I was the one who rescued the three carloads of paperwork and brought it all back to my place for sorting so that I could spend the last six months looking for and providing the answers to the endless stream of questions from 3 accounting firms.

I can breathe again.

Well, for a month or so anyway. There are other legal things afoot, but for me this was the big day, I couldn't stand the though of a bunch of extensions dragging this out forever and it actually got done!

I know it doesn't really sound like a caregiver stress, but this was background music to a host of issues with my mother's practical needs and the fact that she has both dementia and now cancer too; an interesting mix since she keeps forgetting she has cancer. :blink: For the best I suppose. I'm on a learning curve with each passing month or so presenting a new puzzle to solve. What has she forgotten to do? How do I fix that from where I am? Does she even know she forgot how to do something? Or, did she just stop doing it?

I'm incredibly lucky in that I have found some really good "on ground" caregiver help and her RN is in a position to hire and manage other care providers to spot changes and help her with things that need helping with. (An ever changing menu)

I dunno where this is going... I'm just glad the taxes are done and Mom is safe.

[MsTinkerbelly]

Whew! Taxes.

Just short of a year ago in a huge karmic swipe, my father died on tax day. You had to know him to get that, but to say it was ironic is a major understatement in a Monty Python kind of way...

Today the E-file happened, 7 federal and 2 state tax returns filed and the only one of them that needed a 90 day extension (estate) was also completed. While I'm no accountant, I was the one who rescued the three carloads of paperwork and brought it all back to my place for sorting so that I could spend the last six months looking for and providing the answers to the endless stream of questions from 3 accounting firms.

I can breathe again.

Well, for a month or so anyway. There are other legal things afoot, but for me this was the big day, I couldn't stand the though of a bunch of extensions dragging this out forever and it actually got done!

I know it doesn't really sound like a caregiver stress, but this was background music to a host of issues with my mother's practical needs and the fact that she has both dementia and now cancer too; an interesting mix since she keeps forgetting she has cancer. :blink: For the best I suppose. I'm on a
learning curve with each passing month or so presenting a new puzzle to solve. What has she forgotten to do? How do I fix that from where I am? Does she even know she forgot how to do something? Or, did she just stop doing it?

I'm incredibly lucky in that I have found some really good "on ground" caregiver help and her RN is in a position to hire and manage other care providers to spot changes and help her with things that need helping with. (An ever changing menu)

I dunno where this is going... I'm just glad the taxes are done and Mom is

safe.

You have accomplished so much in a year!

The fact that your mother has been safe and well cared for is nothing short of amazing given your grief, the heavy load of paperwork, new home ownership and the logistical nightmare of doing it all many miles from your mother.

I hope you don't mind, but you are always in my prayers...comfort and strength in all you have to do are my focus.(f)

[dykeumentary]

Eldercare is hard, I imagine spouse/partner care is also really difficult.

[TruTexan]

me, I'm a caregiver to my mom already and now my aunt, since my uncle recently passed away. I'm stressed out big time. my ptsd is running an ugly muckity muck in me. I've been ordered by my therapist to do watercolor painting, even though I suck at artistic abilities, and adult coloring with coloring pencils. I'm not amused by this but I'll give it a good go and hopefully it will help lower my own stress levels from my own crap in my head going on. I go for a heart stress test next week just to be on the safe side of my life. I wanted a full blown check up for blockages due to hereditary issues with cholesterol crap in my arteries. Ok ok I'm shutting up. I haven't posted in a while because I'm not enjoying doing much of anything this past couple months. I hope everyone here is getting the support they need. God Bless ya'll.

[Kelt]

Saw this great little video on PBS Newshour this evening:

0eUc7hjYLbI

I was never around the elderly until my father died and I had to move my mother into an elder community. During and after her move I've had occasion to spend 1-3 weeks at a time there with her, (they have guest suites to let), I always have dinner with her in the dining room at a group of 6 friends table, we walk on the campus trails and bump into neighbors, go to her knitting group to be social, etc...

I've gotten to know many of her friends and neighbors to the point of visiting them as well when I am there.

I'm gaining an appreciation for what is really involved in aging in several different ways. I think this is invaluable information, and as much as I may carp about it sometimes, this time may be the best life lesson gift she could give me.

A little pre-Mother's day thankfulness.:bunchflowers:

[socialjustice_fsu]

Saw this great little video on PBS Newshour this evening:

0eUc7hjYLbI

I was never around the elderly until my father died and I had to move my mother into an elder community. During and after her move I've had occasion to spend 1-3 weeks at a time there with her, (they have guest suites to let), I always have dinner with her in the dining room at a group of 6 friends table, we walk on the campus trails and bump into neighbors, go to her knitting group to be social, etc...

I've gotten to know many of her friends and neighbors to the point of visiting them as well when I am there.

I'm gaining an appreciation for what is really involved in aging in several different ways. I think this is invaluable information, and as much as I may carp about it sometimes, this time may be the best life lesson gift she could give me.

A little pre-Mother's day thankfulness.:bunchflowers:

This is so apropos for my situation right now, too. Thank you for sharing this. I had no idea my life would detour this way as I become mom's full time caregiver.

[storyspinner70]

I care for my ex. He's 42, but has had a lot of physical issues as well as mental illness. He was abusive when we were together, and has no one else but a sister who is more mentally ill than he. He has Bipolar Disorder, Borderline Personality Disorder, Depression, OCD which makes him extremely paranoid, ADHD, dyslexia and a host of physical problems - diabetes and neuropathy because of it, hbp, lesions in his brain more than likely caused by the abuse he suffered as a child, etc, etc, etc. He's on roughly 20 separate medications a day.

Generally speaking, he's mobile and gets along pretty well on his own physically, though he tires easily. He is not very well educated in technology, and his dyslexia makes it hard for him to understand things he reads unless he spends a rather long time at it, so I end up taking care of all his bills and his disability check. He can't even write a check or use the ATM without me with him. He does his own laundry, mows the grass (but can't weed eat), pays for our cell phone bill, helps around the house. So, it's not a one-way street.

It's just so hard to deal with him sometimes. The paranoia especially makes for a lot of frustration. I feel "stuck" with him, because I am. I doubt anyone would be able to deal with him, so can't see him ever moving in with any of his girlfriends. Leaving him with no one to care for him is not an option, either. So here I am.

I'm always thinking how much easier my life would be. I try very hard to be patient and I'm failing. He's a better person than he used to be and is no longer abusive, but the stress of dealing with his mental illnesses gets to me. I get angry with him when I should understand. I found some online support places because I can't afford therapy right now with the monthly price of his medication and me having no insurance, and I need somewhere to work through my issues so I stop taking them out on him. I have times of depression, because he is a lot of what is keeping my butch and I long distance. It's so fucking hard. I love him like a brother and resent the hell out of him at the same time.

Women in my family generally live to or past 100, but all seem to have dementia or alzheimer's. My mother is 68 so hopefully I have plenty of time, but even that hits me sometimes - what would I do caring for both of them?

[girl_dee]

My mom is declining and its a hard thing to witness.

She's not the gentle, sweet old lady, heck she's not even old.

[dykeumentary]

This is so apropos for my situation right now, too. Thank you for sharing this. I had no idea my life would detour this way as I become mom's full time caregiver.

And I sure didn't ever imagine that I would be my mom's caregiver!
I was the least likely of her children to even reach 25 years old, and certainly put as much distance as I could between myself and my family (and they wanted me far away too) back in the 80s.
But here I am.
It's very very difficult.

[Kelt]

Saw this great little video on PBS Newshour this evening:

0eUc7hjYLbI

I was never around the elderly until my father died and I had to move my mother into an elder community. During and after her move I've had occasion to spend 1-3 weeks at a time there with her, (they have guest suites to let), I always have dinner with her in the dining room at a group of 6 friends table, we walk on the campus trails and bump into neighbors, go to her knitting group to be social, etc...

I've gotten to know many of her friends and neighbors to the point of visiting them as well when I am there.

I'm gaining an appreciation for what is really involved in aging in several different ways. I think this is invaluable information, and as much as I may carp about it sometimes, this time may be the best life lesson gift she could give me.

A little pre-Mother's day thankfulness.:bunchflowers:

She did it!

In the first minute of this video, Flossie asks "Will this go viral?"

Update: As of tonight over 4 million views.

Made me smile big. :cheesy:

[girl_dee]

I am currently trying to arrange to work from home. Iknow my mom will need me during the day soon.

[socialjustice_fsu]

There are times here lately the only solace I find is through tears and prayer. Does anyone else feel this way? I know this sounds so foolish but I watched a rerun of Frasier late tonight. It was the last one of the last season, I think. I cried until I almost made myself physically ill. It felt like a thousand tears was shed over this stupid rerun...then I wondered if all the fears and unknowns had to find an escape and this was it.

[girl_dee]

There are times here lately the only solace I find is through tears and prayer. Does anyone else feel this way? I know this sounds so foolish but I watched a rerun of Frasier late tonight. It was the last one of the last season, I think. I cried until I almost made myself physically ill. It felt like a thousand tears was shed over this stupid rerun...then I wondered if all the fears and unknowns had to find an escape and this was it.

For me i am.just scared for my mom. Glad you had a release :bunchflowers:

[socialjustice_fsu]

For me i am.just scared for my mom. Glad you had a release :bunchflowers:

Dee, I am so scared for my mom, too. I have never known fear this deep and wide. I am thinking of you and holding you close. Please know that.

[Greyson]

dee and sj, thank you for posting so honestly about your experience as caretakers. I had an assignment this past semester to write a piece about my experience of losing my mother and now caretaking for my elderly father. I discovered some things about myself that were both uplifting and other things about myself that gave me pause. No matter what there is going to be "feelings" involved you cannot get around that.

sj, you already know this but I will say it, the tears are there because of circumstances going on now and from past hurts and disappointment. The miracle for many of us is that we can still find some sort of reason, faith, grace to continue on and in time even with some joy still in us.

Both of you are strong, and intelligent women. You have earned the respect and love of many. Although we have never met "face-to-face" I have had the experience of benefitting from your presence and words here in this online community. My thoughts are respect are with you both.

[girl_dee]

you know what is hard is when you give your parent all of the love and understanding, patience and financial assistance you can, and its more than has ever been received. My mom and I are in a good place now, but I know in the heart of hearts its only because I am the only one of her three children that has anything to do with her. If I had nothing to offer her, I would be rejected as well, and I think that has caused me to do so much for her over my adult lifetime.

[socialjustice_fsu]

dee and sj, thank you for posting so honestly about your experience as caretakers. I had an assignment this past semester to write a piece about my experience of losing my mother and now caretaking for my elderly father. I discovered some things about myself that were both uplifting and other things about myself that gave me pause. No matter what there is going to be "feelings" involved you cannot get around that.

sj, you already know this but I will say it, the tears are there because of circumstances going on now and from past hurts and disappointment. The miracle for many of us is that we can still find some sort of reason, faith, grace to continue on and in time even with some joy still in us.

Both of you are strong, and intelligent women. You have earned the respect and love of many. Although we have never met "face-to-face" I have had the experience of benefitting from your presence and words here in this online community. My thoughts are respect are with you both.

Dear Greyson, I am so grateful for your post. It helped me keep going today. I am learning a great deal about myself and sometimes it does give me pause. As I have cared for my patient's in hospice over many years this is so very different. I am on the other side now. While I am so physically and emotionally weary I have certainly been enlightened. I find the tears (sometimes) to be some sort of cleansing ritual - for lack of a better description. When I moved home to mom's I walked into a less than ideal situation. I suppose I was in denial for months. But that is the past. I can only move forward. I do find some solace through prayer and meditation.
You have no idea what your thoughts have meant to me. You are wise, insightful and will be one of the best hospice chaplains to walk this earth. Go forward with your passion...not many of us ever find it.
Peace, my friend, peace.

[Andrea]

As my honey's diseases progress, I have taken on more of the responsibility but I know I need to take on more. This is hard for us because for the 10 plus years we have been together, I have been the income earner and he has taken care of me.

Now I need to learn to cook (it has been years) and find the energy to work, keep the house, etc. And I want to do it gently so he doesn't feel guilty about not being able to accomplish what he used to.

I feel like I am walking a fine line and am very surprised there aren't local support groups for care givers.

I find being his memory is one of the most energy draining parts of taking care of us.

Thanks for giving me a place to vent.

[Kelt]

Whew! Taxes.

Just short of a year ago in a huge karmic swipe, my father died on tax day. You had to know him to get that, but to say it was ironic is a major understatement in a Monty Python kind of way...

Today the E-file happened, 7 federal and 2 state tax returns filed and the only one of them that needed a 90 day extension (estate) was also completed. While I'm no accountant, I was the one who rescued the three carloads of paperwork and brought it all back to my place for sorting so that I could spend the last six months looking for and providing the answers to the endless stream of questions from 3 accounting firms.

I'm incredibly lucky in that I have found some really good "on ground" caregiver help and her RN is in a position to hire and manage other care providers to spot changes and help her with things that need helping with. (An ever changing menu)


Update:

Yeah, letter from the IRS today, nothing worrisome in particular, just a hold up to close the estate. "We're holding your refund until we finish reviewing your tax return." I wonder which one they're talking about. :seeingstars:

I am so grateful that the on ground people I have for mom are on the ball. A couple of weeks ago they noticed her surgical site looked weird. I had them take her to the surgeon who was mystified and said it was probably a change in blood flow. :blink: OK...

4 days later another caregiver said it was changing and sent a photo to her (private) nurse. He promptly booked/took her to her regular Dr who examined it under UV in a dark room and started her on an antibiotic course. Nobody really knows what's going on, but we're all hoping for "small subcutaneous infection" to be remedied in a few days. We'll see...

I have a yard full of contractors and jury duty in three weeks (which I postponed for the surgery 5 months ago).

Suitcase handy...

[socialjustice_fsu]

my precious mom is coming home from being in a physical rehab facility for 2 months following a major stroke. I will be her care giver. Although the CNA's, PT and OT have taught me so much related to caring for her I continue to feel inept. The thought of this dependency on me is overwhelming. We do have home health coming in starting next week. Mom is a one person assist with almost everything. She lost most of her vision, her speech has been affected and her left side is basically useless. I try not to think about the future too much but right now I seem to be doing a lot of 'what if's.' My health is not too good. Open heart 4 years ago, 1 MI and the constant fear of another one. My 35 year old daughter lives with mom and I. She is not a kind person and is a hindrance in most ways. Always wanting to argue....Not sure if I can tolerate that part too well. My mom has always been my daughter's enabler and subsequently it has created something similar to a tyrant. Mom has refused to make her move - only to rescue her one more time. She is a full time college student so at least she is earning a degree with good grades.
All I can do is take it one day at a time.
I am grateful for this place to simply talk it out and know I am not alone.

[TIMBERWOLF]

I would like to say great job to those of us that have had to take care of parents, spouses or ex spouses. It's not a easy job cause if it was everyone would do it. I know just watching my best friend of 14 yrs and now wife that she put up with a lot of abuse and shit taking care of her ex partner with cancer cause she promised hym she would and to me that is commendable . I came down to help her with hym and he asked me to take care of her and my wife's daughter and also to shave hym. Dignity is something I gave my Mom and Dad when they were passing. im in End Stage Kidney Disease and have many Dr Appointments that my wife sets up with the right Dr's, takes care of the house and her daughter plus going to college on line. Sometimes I don't know how she does it, but I appreciate her and love her so we do what we can. I wish she had better insurance so we can get her taken care of also. Just ranting today but GOD,Great Spirit blessing on all that have to do this.

TIMBERWOLF

[Kelt]

Update:

I am so grateful that the on ground people I have for mom are on the ball. A couple of weeks ago they noticed her surgical site looked weird. I had them take her to the surgeon who was mystified and said it was probably a change in blood flow. :blink: OK...

4 days later another caregiver said it was changing and sent a photo to her (private) nurse. He promptly booked/took her to her regular Dr who examined it under UV in a dark room and started her on an antibiotic course. Nobody really knows what's going on, but we're all hoping for "small subcutaneous infection" to be remedied in a few days. We'll see...


Today she thought it looked worse so her RN went to check it himself. Yep, it looks worse, he sent me the pic, we/he decided that with a three day weekend coming up it wouldn't be a good idea to wait for her regular Dr. He took her to ER where they did some bloodwork, x-ray, and general head scratching. Something isn't right but nobody knows what, another heavier round of antibiotics for now. Next week back to surgeon for an exam, maybe a tissue sample or something if no change...

I cannot believe what good luck I have in this RN that I found for her, he coordinates everything, does all hiring and payroll for her other helpers, and on and on. It's 8:45pm where she is and he just called me again to tell me the med change and let me know he had gone to the drugstore and got her started with this first night dose. Her meds are all mail order, so he is really going out of his way to do all these extra things. He also worked in the local hospital for 17 years, the last five in oncology, so he knows the local surgeons, Drs, and all the nursing staff.

I, of course, am stuck here for a bit. I gave up on her attorney and am now working with mine while I work on my own revised will, to set up a game plan for what happens to her if something happens to me. (I'm the only one who knows how all the moving pieces fit together) Week after this next one I have 5 days committed to jury duty. I hope everything holds together for a couple of weeks, or better yet resolves.

The good news is that mom feels fine, not sick or in pain, likely enjoying all the extra attention. :)

[Chad]

My turn is coming, my mom is 84 and we are working on a plan. I am scared for the years ahead. I am the only surviving member of our family besides mom so it all comes down to me.

[Kelt]

My turn is coming, my mom is 84 and we are working on a plan. I am scared for the years ahead. I am the only surviving member of our family besides mom so it all comes down to me.

You're in the same boat I'm in. No help or backup. My mom is also 84. If your mom has friends or a church or something that might be a start.

I'm glad you're working on a plan now, there are more details than you can imagine. I thought my folks had living wills, it turned out to be just pour over wills and asset paths. When my father died last year was when I figured out they had changed things recently, and apparently not finished.

Figure out all you can now before the pressure hits, you'll thank yourself later.

[Chad]

You're in the same boat I'm in. No help or backup. My mom is also 84. If your mom has friends or a church or something that might be a start.

I'm glad you're working on a plan now, there are more details than you can imagine. I thought my folks had living wills, it turned out to be just pour over wills and asset paths. When my father died last year was when I figured out they had changed things recently, and apparently not finished.

Figure out all you can now before the pressure hits, you'll thank yourself later.

Thank you, my mom has a big support group where she is but I have to move her because she lives too far away from me. I wonder how that will effect her quality of life.

[DapperButch]

Thank you, my mom has a big support group where she is but I have to move her because she lives too far away from me. I wonder how that will effect her quality of life.

Chad, Kelt lives far from his mom and he has been able to manage it. I am sure he will come in and give you some ideas.

My role in order to "take care" of mom is to NOT move. Like, I no longer see myself as having that choice since we live near each other. My sister is on the other side of the country. Don't feel bad for me though, I like where I live. But, there are also a couple of other places I have fantasized moving to. Also, my sister will be very involved with getting/keeping things set up for mom. I won't be alone in it, even if I lead it.

I don't expect that my mother will ever live with me though. She has a large long term care insurance plan which gives the option for people to come to her house instead of her moving into a facility. She can use her monthly allotted amount however she would like. We hope that unless she has cognitive difficulties that she would be able to stay there until the end.

All of you guys are amazing for what you do for your parents. My hat is off to you. Hang in there.

[*Anya*]

>Snip<

I don't expect that my mother will ever live with me though. She has a large long term care insurance plan which gives the option for people to come to her house instead of her moving into a facility. She can use her monthly allotted amount however she would like. We hope that unless she has cognitive difficulties that she would be able to stay there until the end.

.

You touched on something important Dapper.

Money.

If our parents or ourselves were/are able to save/invest/have long-term care insurance; it is much, much easier to ensure needed care, than if we do not.

My parents are very well-off. They both had great jobs and my father invested and saved.

They are now in a very nice assisted living facility. My dad is now 92. He is cognitively intact but never recovered from a hip fracture from about 4 years ago. Most elderly people do not survive a year after one, so he is fortunate in that regard.

Due to their money, he receives the highest level of care for all of his needs. This ensures he does not require a higher level of care such as a nursing home. I do not believe he would survive that mentally and would give up.

My mom is 89. She is in better physical shape and requires a lower level of assistance but they live together in the same sort of apartment. All their meals, nursing care, doctors, etc. are taken care of.

As I am the black sheep of the family and am periodically "kicked out" of the family, though I am a nurse, my father chose my oldest brother as the one to make all of their healthcare decisions and my youngest brother, the total spendthrift, to be the executor of the estate.

It is what it is and though you can sense bitterness on my end, I am glad that they have money for good care.

The alternative is to do what many of you are doing: moving or considering moving parents into your home to provide the care that they need.

Even if my parents were speaking to me, I do not know that I could do it. My parents were/are severely critical of me and abusive physically and emotionally until the day I moved out on my 18th birthday. Coming out as a lesbian put the icing on that cake for me.

This brings me to myself. I fear for my own aging and health. I love my girlfriend dearly but she is lacking in the empathy gene and does not suffer illness or weakness very well.

I had health problems by the time I could afford to purchase long-term care insurance and a private disability plan. Ergo, I will not have that as my parents do.

My recent illness, including spending 5 weeks in the hospital, almost 3 weeks of 3 times per day IV antibiotics through a PICC line from home health RN's (I refused 3 weeks of a SNF for fear of greater expense and catching some other infection) brought all of it into sharp focus for me.

According to AARP: The aging population is growing, and so is the number of lesbian, gay, bisexual and transgender (LGBT) adults who are moving into their later years. In the next several decades, LGBT adults age 65 and above is expected to double, reaching more than 3 million by 2030.

We face lack of family support, lack of resources, lack of money, fear of hostility by caregivers due to being LGBTQ, among other issues.

I guess I am sharing this because many of you are in your 20's, 30's, 40's. I encourage you to do what you can to plan for your later years. It is not just our families that we have to consider but ourselves. We get sick and we will need caregivers.

When I was younger, aging seemed so far away and my whole focus was on my then-partner and raising two daughters to adulthood.

It is not far away at all now.

[Kelt]

Chad, Kelt lives far from his mom and he has been able to manage it. I am sure he will come in and give you some ideas.

My role in order to "take care" of mom is to NOT move. Like, I no longer see myself as having that choice since we live near each other. My sister is on the other side of the country. Don't feel bad for me though, I like where I live. But, there are also a couple of other places I have fantasized moving to. Also, my sister will be very involved with getting/keeping things set up for mom. I won't be alone in it, even if I lead it.

I don't expect that my mother will ever live with me though. She has a large long term care insurance plan which gives the option for people to come to her house instead of her moving into a facility. She can use her monthly allotted amount however she would like. We hope that unless she has cognitive difficulties that she would be able to stay there until the end.

All of you guys are amazing for what you do for your parents. My hat is off to you. Hang in there.

I'll step in with a couple of thoughts and if there is interest some of us can talk about it in depth. Since this has been my whole life for the last year and a half I could go on forever...

First, Chad, your mothers social support network is invaluable, if she has one now you might think about being the one to move. If she loses it and can't form a new network in a new place you become that too and it can seriously affect her health and your availability of time for anything else.

Second, there are two ways to do this, bluntly it's about money. This is expensive no matter how you do it and you will pay with either cash/insurance or time spent doing things yourself and finding resources through other services/agencies. Each way has its own advantages/disadvantages, my mother has money so I can hire a lot out BUT...

Dapper, are you listening? There are tons of services available to the elderly if they low income qualify. If they have assets, all of that just evaporates. :blink:

I didn't want to move my mother out of her house right away but weirdly it boiled down to transportation. She needed to be taken places because the week my father died their car did too, not repairable and mom wasn't too good behind the wheel anyway. Their town had plenty of options, the big elderly transport for hire system (oops, you can't use it unless a specific diagnosis or are resident in a "community") or the non-profit version of the same for anybody; except she lived one block over the county line. Many small independent outfits to drive folks to their medical appointments - all income qualified - no go if you have resources (and what about things like getting groceries or a haircut?) Taxi? No company large enough to trust and unreliable at best in her location.

The only way I can see doing this from a distance, and I am very fortunate in this, is to not have to work. I do have to drop everything and go, with very little notice, for undetermined periods of time, on a regular basis. Maybe self employed - non-location dependent. It's all about finding good comprehensive systems and then tying them together. My mother lives in a very nice community in an independent apartment with a private car and driver, cook, houskeeping, etc. I have an additional system on top of the one there for private medical help, which as I posted, came into play yesterday, again...

There are several people on this site with a variety of situations going through this right now. Chad, ASK. If you haven't done this or been around it before the learning curve is steep. Voice some of your concerns and folks with matching circumstances may step in or folks like me can give some best guess or anecdotical ideas.

[DapperButch]

You touched on something important Dapper.

Money.

If our parents or ourselves were/are able to save/invest/have long-term care insurance; it is much, much easier to ensure needed care, than if we do not.

My parents are very well-off. They both had great jobs and my father invested and saved.





Dapper, are you listening? There are tons of services available to the elderly if they low income qualify. If they have assets, all of that just evaporates. :blink:



Yes, Sir, I am! Why do you think mumsie has long term care insurance!

The first order of business for me after Dad died was to find mom a good financial advisor. He said that my mother was in that sweet spot place financially where based on her age (and other health data), she should have enough money to live through the rest of her life, including assisted living needs. The other option was long term care insurance. I voted for long term health care insurance, my sister agreed, and mom rolled with it. I do believe I did due diligence in choosing the policy and had enough information to be convinced it wouldn't "go away" or something when she finally needed to access it. It is also very low criteria of medical assistance needed, in order to get it activated.

She put down a HUGE amount of money to buy it in one block. At that time, doing monthly payments meant that if you didn't use it (i.e. died before you needed to access it), your heirs lose it. With buying the the policy outright, and if it wasn't used, your heirs got more than half back. I heard that this changed at some point since we bought mom's policy; heirs will get some money back even if owners of the policies paid monthly for it.

Anyway, the data shows that people die on average between 2-3 years after moving into assisted living. The policy that my mother bought will cover her for 6 years for an assisted living apartment costing slightly more than twice the amount of the average cost of an assisted living facility per month around here. I believe the data indicated that services in her home - even 24 hour coverage- would last about that long, too. I dunno. Then, of course, if she needs more, she still (hopefully) will ahve enough money to cover her until the end. She only spends what she makes per year, pretty much. I DO think it will be ok. Otherwise, I think that my rich sister should cover her costs! lol

Did you look into/encourage your mother to buy long term care insurance after your father's death (I think I asked you once if they had any and you said no?). If not, why not?

I have heard that the price for long term care has gone of astronomically since my mother bought her policy 6 years ago. It had already gone up a great deal at the time she purchased; supposedly when these type of policies came out insurance companies set the cost of those policies too low and were scrambling to get on top of it.

I didn't know really anything about long term care before I looked into it, but having worked with the severely mentally ill in the past, I knew a lot about medical care, including the fact that they had to have NOTHING in order to get into long term care facilities. That is what started my hunt.

Do you recommend parents selling their houses to their kids early on so that this asset could not be touched? I am just thinking about how it is problematic if a person sells/gives money to their heirs less than 5 years before prior to their "spin down". At that was my understanding 10 years ago. Or something like that.

[Kelt]

Yes, Sir, I am! Why do you think mumsie has long term care insurance!

The first order of business for me after Dad died was to find mom a good financial advisor. He said that my mother was in that sweet spot place financially where based on her age (and other health data), she should have enough money to live through the rest of her life, including assisted living needs. The other option was long term care insurance. I voted for long term health care insurance, my sister agreed, and mom rolled with it. I do believe I did due diligence in choosing the policy and had enough information to be convinced it wouldn't "go away" or something when she finally needed to access it. It is also very low criteria of medical assistance needed, in order to get it activated.

She put down a HUGE amount of money to buy it in one block. At that time, doing monthly payments meant that if you didn't use it (i.e. died before you needed to access it), your heirs lose it. With buying the the policy outright, and if it wasn't used, your heirs got more than half back. I heard that this changed at some point since we bought mom's policy; heirs will get some money back even if owners of the policies paid monthly for it.

Anyway, the data shows that people die on average between 2-3 years after moving into assisted living. The policy that my mother bought will cover her for 6 years for an assisted living apartment costing slightly more than twice the amount of the average cost of an assisted living facility per month around here. I believe the data indicated that services in her home - even 24 hour coverage- would last about that long, too. I dunno. Then, of course, if she needs more, she still (hopefully) will ahve enough money to cover her until the end. She only spends what she makes per year, pretty much. I DO think it will be ok. Otherwise, I think that my rich sister should cover her costs! lol

Did you look into/encourage your mother to buy long term care insurance after your father's death (I think I asked you once if they had any and you said no?). If not, why not?

I have heard that the price for long term care has gone of astronomically since my mother bought her policy 6 years ago. It had already gone up a great deal at the time she purchased; supposedly when these type of policies came out insurance companies set the cost of those policies too low and were scrambling to get on top of it.

I didn't know really anything about long term care before I looked into it, but having worked with the severely mentally ill in the past, I knew a lot about medical care, including the fact that they had to have NOTHING in order to get into long term care facilities. That is what started my hunt.

Do you recommend parents selling their houses to their kids early on so that this asset could not be touched? I am just thinking about how it is problematic if a person sells/gives money to their heirs less than 5 years before prior to their "spin down". At that was my understanding 10 years ago. Or something like that.

Lol, of course you've got it handled financially, I wasn't questioning that. I just want to make sure you're ready for the sudden course changes that can happen. My mom is very well off, I figured I could just staff her up at home with lawn guy, housekeeper, cook etc. Who knew a damn head gasket on the Buick could start a cascade of events that would lead to me moving her thirty days later??! It has actually turned out very well and she thanks me at least weekly for getting her into a place where she can make friends and feel safe. (Those little pull cords make her feel much better, and me too)

I'm really glad you got your mom one of the policies that pays a set amount to be used at will rather than just covering specific events, it should save you a ton of headaches. The 6 years should be plenty, just don't start it until you need to.

My mother doesn't have long term insurance per se, we just pay as we go. A number of years ago my father hit a point where he considered them to be self insured and he was right. She has SS+pension+2 large untouched annuities and a trust fund so we're good to go so that she can have the best of whatever she wants. I just manage the managers at this point (that sounds so easy now after a year of tearing my hair out to set it all up). It used to be that folks with assets would set it up so that the kids could be "evil" and strip them of assets through legal maneuvering and then just show up with "gifts". This was how my folks were set up for years but the IRS wised up about 15-20 years ago, the 5 year look back is now carefully scrutinized as I understand it.

On the house, I would ask an Estate attorney. She could gift it now but of course any amount over $14k would have gift tax applied, if there are any trusts involved it could be held inside of that to be protected from liability and just regarded as part of her portfolio. Unless the title changes names prior to her death there will be possible estate taxes involved if she leaves over X amount. Over my pay grade, you should look into it. The annual "tax free gift" of $14k per year is a great tool for folks it could apply to. My best bud's mother has been in a facility for years and is about to run out of money and get switched to Medicaid. His sister has been doing this for years; have their mother "gift" the money which was set aside in an account for if she should run out in the sisters name. You do have to have faith in the account holder to not just hijack the money though. Now when they need it they can use it for the extras not otherwise covered. I think this might be a way around the look back as well, check with someone qualified.

Right now I am mid-estate plan for myself and it looks like I will put my house into a trust, it makes life much easier for whoever gets it. When I knew I would have to sell my folks house I just cleaned out the possessions and handed the keys to the trust officer. They are required by law to get fair market value and do all the messing about with RE agents and such. I was so overwhelmed at that point I would have sold it for $10 just to be done with it, so the trust set up really helped.

On a side note: I posted some time ago an article about the cost involved in "the last five years" of the three primary ways people go, cancer, heart or dementia/AZ and the ranges given were $200-$300k for the five years. As I look at my mothers actual expenses now with fairly low needs I think those numbers are wrong, it must discount housing or something because she's about $50k per year after taxes now ($250k for 5yr) and it will only go up from there. The place where I have her is within a couple hundred bucks a month of the other places so it isn't much out of line with "average" independent living + six hours a week of personal care. By contrast, when my father was dying that last month when he was under hospice the SNF charged $10k for the one month room and board and that didn't include supplies or medical. I guess that's just to say the numbers used by planners might not pass the reality test.

******************************************

I know some of this doesn't look like what most would consider "caregiver stress" since it isn't the daily feeding, clothing, driving around part of it. I've done a share of that too, spoonfeeding my father who hated me and brushing his teeth when staff didn't show at the SNF, setting up my mother who didn't call me for 26 years because she was too timid to cross my father etc.. I think stress comes in different forms and everyone gets a unique set of challenges. I talk about having to do this all myself, but on the other hand I don't have to work around siblings that might have different ideas or other relatives trying to micromanage.

I really hope other folks will come by and give their take on what they are dealing with. Anyone who cares about anyone else be it partner, parent, or child is exactly one nasty accident or disease away from suddenly becoming a "caregiver" in some capacity.

[Kelt]

Today she thought it looked worse so her RN went to check it himself. Yep, it looks worse, he sent me the pic, we/he decided that with a three day weekend coming up it wouldn't be a good idea to wait for her regular Dr. He took her to ER where they did some bloodwork, x-ray, and general head scratching. Something isn't right but nobody knows what, another heavier round of antibiotics for now. Next week back to surgeon for an exam, maybe a tissue sample or something if no change...


Welp, mom got lots better with the second antibiotics and now this "thing" has taken up a new residence a bit lower. Her nurse took her to the surgeon for the follow up appt scheduled before and he did a core tissue sample on the spot. Now we're back in the wait for pathology bucket again. Nail bitin' time for another week.

It's the waiting that drives ya nuts...

[easygoingfemme]

I need to have this conversation with my parents. They are in their mid 70s and doing great, but anything can happen. We talked about it a bit about 5 years ago when we were tag teaming taking care of my grandmother through her end of life and made some light plans, but everything was so heavy and emotional at that time I'm not sure where they stand now. I am glad, for many reasons, that I had an active role caring for my grandmother during her decline. Stage IV breast cancer, alzheimers, sundowners syndrome. She kept us busy. One thing I learned was that I'm not going to be able to count on my brother to provide any actual help. Gratitude to you all who are spelling out the thoughts and options to be looking at for long term care and security.

[easygoingfemme]

Kelt, hoping you get results from the tissue sample very quickly and that the results are not worrisome...

[Kelt]

Kelt, hoping you get results from the tissue sample very quickly and that the results are not worrisome...

It's good news, the cancer has not returned. The infection is a weird one and quite large, but we are treating it aggressively with antibiotics (which I hate but are sometimes what you have to do..), topical steroids, and probiotics that will continue for three weeks after the antibiotics so that we can help her system rebuild when this is hopefully past. Thank you for keeping in touch on this . :)



On a side note: I posted some time ago an article about the cost involved in "the last five years" of the three primary ways people go, cancer, heart or dementia/AZ and the ranges given were $200-$300k for the five years. As I look at my mothers actual expenses now with fairly low needs I think those numbers are wrong, it must discount housing or something because she's about $50k per year after taxes now ($250k for 5yr) and it will only go up from there. The place where I have her is within a couple hundred bucks a month of the other places so it isn't much out of line with "average" independent living + six hours a week of personal care. By contrast, when my father was dying that last month when he was under hospice the SNF charged $10k for the one month room and board and that didn't include supplies or medical. I guess that's just to say the numbers used by planners might not pass the reality test.


I wanted to come back in on this since I came across something new to me and I learn everyday how much all of this costs.

I was looking at a "Long term healthcare cost calculator" on the Lincoln Financial site since mom has an annuity there and I am sort of looking at whether or not I should do a long term policy or annuity for myself. It was interesting that instead of using the $200-$300k figures for 5 years used by financial planners, their tool uses $91,250k per year with anticipated inflation of 2.9% per year. That is just the default starting point, the calculator has sliders to change the basic variables to test different scenarios. I'm sure other companies have similar tools. Granted this is a type of company that sells large and complicated insurance products it would be in their interest to use higher numbers to sell bigger plans.

However, it seems like maybe they are closer to the truth, and maybe under still, to what I'm seeing with my friends and myself dealing with this.

Food for thought...

[Kelt]

Pretty sure mom has "Sundowners" I'm learning about it. :(

She had her second middle-of-the-night stroll last night after being the only one who heard a fire alarm, same as last time. At least this time she grabbed her purse and didn't get locked out.

She also cancelled her driver to the dentist today because her primary nurse called her this morning to say he would take her. He's in El Salvador this week. :thinking:

I spoke with her back-up nurse who has lots of dementia experience and told her I thought mom was having "auditory hallucinations" and a couple of other things. She said she thought it was this sundowners condition. In reading through some of the symptoms, I'm glad she's only having the more benign ones for now.

[easygoingfemme]

Pretty sure mom has "Sundowners" I'm learning about it. :(

She had her second middle-of-the-night stroll last night after being the only one who heard a fire alarm, same as last time. At least this time she grabbed her purse and didn't get locked out.

She also cancelled her driver to the dentist today because her primary nurse called her this morning to say he would take her. He's in El Salvador this week. :thinking:

I spoke with her back-up nurse who has lots of dementia experience and told her I thought mom was having "auditory hallucinations" and a couple of other things. She said she thought it was this sundowners condition. In reading through some of the symptoms, I'm glad she's only having the more benign ones for now.

My grandmother had sundowners syndrome and it was really rough as time went on. She "ran away" a lot at night and imagined a lot of horrible things were happening in her house and out in the world. Once she was in assisted living she had a security alarm on her wrist to alert staff if she tried to break out at night. I do know that, when it was first developing, we found she improved when she started getting injections of vitamin B12. The summer months also help as it really is impacted by darkness. Winters get rough with sundowners. I'm sorry this is being added to her care needs.

[Martina]

My mom has 24/7 HHA's and long-term insurance which covers about a fifth of the cost. The rest comes from savings. I have lung issues and arthritis. I cook and do the finances and arrange everything, take her to treatment, and so on. It really takes two to take care of her, and as I am an only child, the second person is someone we have to pay. If she goes into a facility, long term insurance will pay more, and with her income, I imagine she would be fine. It's not likely though. If she goes downhill (god forbid), it probably won't be long because she has a kind of cancer that when it grows, it grows fast. It's glioblastoma. What Beau Biden had.

She just got out of the hospital. Stroke, they think, but they are not sure. At least it wasn't tumor growth.

[MsTinkerbelly]

For the years we cared for my mother it was the worst stress I can ever remember going through, and I had help!

My spouse stepped up and changed her life to work from home...she was there doing all the bathing and wiping during the day while I went out to work, and I had the nights including all trips to dialysis. I had to take a lot of time off work to take her to doctor appointments, but fortunately in California my employer had to let me!

While we had a lot to handle, I really felt blessed to have had that time with mom. I will always be grateful that I had such a wonderful love to help get us through it.

My thoughts go out to all of you struggling to find ways to care for your loved ones. (f)

[Martina]

I am so so sick of unsolicited advice especially from "friends" of my mom's who have not offered or given any help. (Silent scream)

[flapdoodle]

9 years ago, I uprooted my life, rented out my house to move back to NY to care for my Mother.
This lasted years.
I had lost so much weight from stress, I was weak, tired, exhausted in every way.
I was moms legs ..eyes, everything. After a broken hip and other walking issues, Mom was recliner bound, unable to even get up & get into bed, but, sharp as a tack. My heart hurt watching my Mother suffer in a body that was no longer hers.

My wife and I lost our moms 4 months apart. I can wake up every day knowing I did my very best. I deal constantly with the "if I was this ..or had I done that would mom still be here", I learned I had done all I could and no matter what more i did or didn't do, the guilt of not being enough would always loom.

She became my best friend, confidant, buddy, full time job, and my child, while always being my Mom. She died in my arms, while I was wetting her lips, she smiled and drifted off knowing she was safe.

She once called me her life line.
I wish she would call me right now.

You are all amazing for what you are doing. It's the most important job you will ever have.

[Kelt]

I'm working through the documents to set up an alternative power of attorney and guardianship for my mother should something happen to me before she dies. So far I have an incredibly detailed an comprehensive medical dpoa done, good enough I've decided to use it myself as well replacing what I currently have. Don't even start me on the financials, I hope those will be ready in a week or so. This should have been done a year ago, I had to switch attorneys to get the ball rolling, I hope there isn't too much fallout because I still need the original one for some other things. I just can't leave her unprotected this long.

Since there is no family, I have to use a stranger, a geriatric care manager. I've never made such difficult decisions in my life. Trying to imagine every scenario, predict every possible hiccup, and put in place bulletproof provisions for each. It can't be done of course due to the ever present "unknown-unknown".

This is unlikely to be needed as I plan on staying alive, but this would also go into effect if I hit predetermined levels of incapacity due to disability I cannot predict.

At the same time it is getting ever more real in my own mind that I have to do this for myself as well.

There is a lot of very unpleasant thinking that has to go into all of this. :thinking:

[TruTexan]

I have decided it's time to leave here. I've decided it's time for me to get MY life back. It's time for me to move on from being mom's caretaker. I love my mom, but my life is changing around me, I"m involved with a beautiful woman, and it's time I spent MY life, living it. I've decided I'm moving in with my gf.
I know it's going to be a rocky road for me to talk to my family about it, and younger sister will use manipulation and guilt trips to try to get me to stay. I can't let them put me on a guilt trip. I've done my part and it's time I lived MY life as I need to live it. I will only be at most 5 hours away, it's not like I"m 3 states away. Mom's brothers can watch over her or she can move to Tenneessee to live with my younger sister. I've done all I can and I'm burnt out and need my life back. I love mom, but it's long over due.

[Martina]

Today the oncologist used the word "dying" for the first time, referring to my mother who has brain cancer. I just can't accept it. There can't be a world without my mother in it. There is no world that I accept without my mother in it.

[dykeumentary]

For the last 10 years my life has been spiraling closer to Mom's and to being her caregiver. This summer that's all I did. Last week she broke her hip. So combined with her advanced Parkinson's, the nursing home seems to be the best option.
I'm devastated. Could I do more? Could I have prevented this? Am I letting her down if she goes to a nursing home?

[Zimmeh]

After taking care of my dad for the last ten years of his life and seeing how he was treated in a nursing home; I decided to become a certified nursing assistant and eventually a registered nurse. I will treat all of my residents with the respect and dignity they deserve. On Friday, I started working on the floor of the nursing home and started talking to an elderly woman named Betty. Her and I both agree, that the Wizard Of Oz is one of the best movies. Watching her smile at the thought of remembering watching this movie, melted my heart.

Zimmeh

[MsTinkerbelly]

For the last 10 years my life has been spiraling closer to Mom's and to being her caregiver. This summer that's all I did. Last week she broke her hip. So combined with her advanced Parkinson's, the nursing home seems to be the best option.
I'm devastated. Could I do more? Could I have prevented this? Am I letting her down if she goes to a nursing home?

What a difficult decision you face...

I always told myself that my Mom would never be placed in a nursing home, and I was lucky we never got to that point. Well actually that is not 100% accurate...she went to a nursing home for rehab and care when she broke her hip. I ran several care homes/skilled nursing facilities, and they are mostly wonderful places.

Sometimes the decision boils down to where would she receive the best care?

Can you do it at home? Are you healthy enough, because it takes everything out of you. Do you have support? Is home the best place for her, or does it feel like you HAVE to in order to be a good child?

I hope you have help in making your choices, but it can be a struggle if you have siblings who are not on the same page, and can't/won't help.

Hang in there and do the best you can; she is lucky to have someone who cares in her life.(f)

[Tommi]

Hope everyone is well, and able to give thanks for the life you have today, and hope for a sunny tomorrow, and give thanks some more.

[TIMBERWOLF]

Its a hard thing and sad to watch your parents go down hill and the best we can do is make sure they transfer to the afterlife the Great Spirit has been prepping them for. I took both of my parents to a safe and loving relief of this land.
Now My older sister who wouldn't listen to me when I told her not to go on Home Hemo due to her having uncontrolled blood sugars,BP and fluid gains and 3 heart attacks has passed on this last Monday. I have been on dialysis for 3 yrs and when I was on peritoneal dialysis I had to have emergency surgery and almost died for infection. I told her then do not go on home dialysis stay in center. My sister was the type that wouldn't listen to anyone but scam guys.
May she rest in peace or finally find peace.

[Tommi]

Its a hard thing and sad to watch your parents go down hill and the best we can do is make sure they transfer to the afterlife the Great Spirit has been prepping them for. I took both of my parents to a safe and loving relief of this land.
Now My older sister who wouldn't listen to me when I told her not to go on Home Hemo due to her having uncontrolled blood sugars,BP and fluid gains and 3 heart attacks has passed on this last Monday. I have been on dialysis for 3 yrs and when I was on peritoneal dialysis I had to have emergency surgery and almost died for infection. I told her then do not go on home dialysis stay in center. My sister was the type that wouldn't listen to anyone but scam guys.
May she rest in peace or finally find peace.

Sorry for you loss. Many with Disease and illness visit here, , send love and hope, and giving thanks this week. Knowing diabetes, and kidney failure, like you do, and having the support of love at home has made a difference in your longevity I bet. Besides, with your spouses medical background, she knows when and what to do.
She has been a caregiver her whole life, plus raising a child with difficult needs by herself,

So well wishes to you, Spirit Dancer and your daughter

[TruTexan]

Well my new life move was a huge mistake. I'm now back and living with my mom. I dont have the means right now to get my own place. Its going to be a very long time begore I can. Please pray mom and I get along well enough until I can move out after paying off my debts.

[Zimmeh]

I work in the rehab unit at a nursing home. It's a good feeling to watch your residents become well enough to go home. Some of our residents never leave. I make their stay a very happy one. The residents call me and my coworker the crazy aids. I hope you make the best decision, because my mom and stepdad put his grandma in the nursing home where I work. She received the best care and love until her death this past Monday.

My thoughts are with you,


Zimmeh

For the last 10 years my life has been spiraling closer to Mom's and to being her caregiver. This summer that's all I did. Last week she broke her hip. So combined with her advanced Parkinson's, the nursing home seems to be the best option.
I'm devastated. Could I do more? Could I have prevented this? Am I letting her down if she goes to a nursing home?

[dykeumentary]

Zimmeh, I'm sorry for your loss. Also thank you for your kind words of support.

[Kobi]

My Mom is 87. She was well enough to live alone in her own home until a month ago when she fell and hurt her leg.

She has been in rehab and was doing well but it became clear she could not live alone anymore. Her memory deficits became more noticeable out of her own environment. And physically her mobility is limited due to her pre-existing medical problems and now the leg.

Her personality makes it more complicated. She is either crying hysterically or verbally lashing out at everyone who is trying to help her or completely normal and calm. You never know which will greet you when you call or visit.

Sometimes she understands assisted living is needed. Other times she does not.

There are 3 of us kids. I have been in and out of the hospital since August and am facing anther surgery by Xmas. My sibling who took over Mom's care had a heart attack 2 weeks ago and the stress of dealing with her on this matter is affecting him noticeably. He has to leave when she starts with her crying or anger because it upsets him so.

My other bro and wife have had to take over the planning and the physical stuff us other 2 cannot do. Funny how they kept their distance for the last 10 years even tho they live next door to Mom, and helped only when asked and the help came with attitude. Now, they are more than happy to help out now as needed without any attitude. Irks me to no end.

Yesterday, she was evaluated by the assisted living they chose. We are awaiting word on her acceptance. It sounds like a very nice place and is lovely. But, Mom isnt a sociable kind of person. She prefers only to be with family. There are only a handful of us left and we are scattered thru New England.

Mom is stressed to the max. We are stressed to the max. I wish I knew what to do to make the transition easier for her and for us.

[Zimmeh]

Kobi,

I would go visit this place. When a new resident comes to my unit, we make them feel at home. If they cry frequently, I go up to them and hug them. This is a scary time for them. We had one lady, who would punch us and by the time she was sent home, would give us a hug. Just give your mom time to adjust to being in the rehab home and put up pictures of you and your siblings.


Zimmeh

[Tommi]

My Mom is 87. She was well enough to live alone in her own home until a month ago when she fell and hurt her leg.
------
Mom is stressed to the max. We are stressed to the max. I wish I knew what to do to make the transition easier for her and for us.

For the last 10 years my life has been spiraling closer to Mom's and to being her caregiver. This summer that's all I did. Last week she broke her hip. So combined with her advanced Parkinson's, the nursing home seems to be the best option.
I'm devastated. Could I do more? Could I have prevented this? Am I letting her down if she goes to a nursing home?

Kobi and dykeumentary,

It is a tough transition, and one we never want to face. Dykeumentary, imagine this is so hard to watch, and not be able to stop the progression of what will be best for them.

Kobi, Just wanted to let you know, I have seen folks just like your Mom thrive from a safe transition. Even though a loner, she may find that the companionship, safety and once familiar with the folks will bring her a new lease on life.

Take her things she is fond of. Framed Favorite photo's for her wall, and even a bedside lamp, or other items they may permit will help.

Hoping for the best for you and yours. (f)

[Kobi]

The not-for-profit educational travel organization Road Scholar offers $1,300 grants for caregivers to help eliminate cost as a barrier to participating in a learning adventure. Available in 50 states, the programs provide a warm, inclusive community that all Road Scholars enjoy.

Who Is Eligible For A Family Caregiver Grant?

You’re an eligible caregiver if…

Your loved one is receiving Home Care, Hospice, visiting nurse, LPN services, or comparable or related services.
Your loved one is in Hospice, Adult Day Care, Memory-care, Nursing Home or comparable or related facility.
You lost a loved one within the past two years who was in any of the above situations.
You live in the United States and are 50 years of age or older.


How Much is The Award?

The Caregiver Grant is an award of up to $1,300 applied to the cost of a Road Scholar program. Road Scholar only asks that you pay a $100 deposit, to ensure your spot in the program.


Can I Use The Grant for Any Road Scholar Program?

The grants are only available for our programs in the United States that cost no more than $1,400.


What’s Included in Road Scholar Programs?

We take care of everything. Lodging, meals, field trips, transportation during your program and much more — it’s all included.


Can I Go by Myself?

Yes! Solo travelers love our learning adventures for the warm and welcoming camaraderie.

The Caregiver Grant is applied to the cost of your program only. It does not cover the cost of transportation to and from your program.

These grants will be available until they are all awarded.

website (https://www.roadscholar.org/about/financial-assistance/caregiver-grants/)

[Chad]

My mom had a knee replacement last Tuesday. The hospital sent her to a "rehabilitation center" on Thursday.

Well last night I got the call that mom was crying and the "rehab center" was neglecting her.

I went into full on bull mode (not pretty). I called mom's doctor on her cell phone and told her that I was coming up there today and taking mom back to the hospital. Well the "rehab center" was really a nursing home and it was gross. I took mom back to the hospital but after 5 hours in the ER they would not admit her. So I brought her home to my house.

Tomorrow we will begin again with a doctors appointment and try to get her into a real rehab center.

Sometimes the health care system can be a challenge.

I have to take off work but hey she is my mom.

[pumpndude]

Hi, I'm a caregiver for my mom who is 94yr old now and my sisters legal guardian. She has slowed down a lot more and her memory is starting to affect her and I have my sister who was born slow...She used to help me more but she had surgery in 2014 and right now she needs to walk more and start lifting weights to get her arms stronger. She doesn't walk as much as she could, so she's a work in progress..

Yes I get somewhat stressed but I'm grateful that I can be there for my family... I have been in recovery for 20 yrs now....I am grateful that I found recovery and I have a place to vent, at meetings (AA/NA), and meet people that are care givers too....
I manage all accounts , bills , etc. , I don't have more time for home repairs or work on property. I'm on disability but I think that's helpful because I can be home more.

I have work to do on my property too but one job at a time....I'm going to finally go and talk to a worker and see what kind of support I can get....I'll sign my mom and sis up for meals on wheels and see if I can get help cleaning the house....whatever help I can get will be very helpful

I would love to have support from a spouse but that's not the case...
Some day I will find the right lady as a partner and best friend or she will find me.....

Anyway that's my story ....

To all here, I just take it one day at a time and take timeout for myself....

[MsTinkerbelly]

Hi, I'm a caregiver for my mom who is 94yr old now and my sisters legal guardian. She has slowed down a lot more and her memory is starting to affect her and I have my sister who was born slow...She used to help me more but she had surgery in 2014 and right now she needs to walk more and start lifting weights to get her arms stronger. She doesn't walk as much as she could, so she's a work in progress..

Yes I get somewhat stressed but I'm grateful that I can be there for my family... I have been in recovery for 20 yrs now....I am grateful that I found recovery and I have a place to vent, at meetings (AA/NA), and meet people that are care givers too....
I manage all accounts , bills , etc. , I don't have more time for home repairs or work on property. I'm on disability but I think that's helpful because I can be home more.

I have work to do on my property too but one job at a time....I'm going to finally go and talk to a worker and see what kind of support I can get....I'll sign my mom and sis up for meals on wheels and see if I can get help cleaning the house....whatever help I can get will be very helpful

I would love to have support from a spouse but that's not the case...
Some day I will find the right lady as a partner and best friend or she will find
me.....

Anyway that's my story ....

To all here, I just take it one day at a time and take timeout for myself....

Here in California you can get hours for domestic help if your doctor says you need them, and you are under a certain $$ income or receive SSI in addition to SS disability.

It does not have to be a licensed person...they just take a 1 day seminar about rules and regulations. My friend gets 24 hours a week of help with feeding, dressing, bathing...they don't monitor how the hours are broken down, so someone could come in and clean, do laundry, cook a weeks worth of meals for the freezer, etc...

IHSS is the agency, check your listing for the number in your area.

Good luck!

[DressyFemme]

My partner is permanently disabled due to type 2 diabetes, a foot deformity and torn ligaments in her lower legs from a work accident. She uses a cane, walker or wheelchair depending on the length of excursion. She gets SSD and her disability retirement pension. It was a huge adjustment for us especially her as we were both active... dancing fishing coffee nights running a dinner group running a brunch etc. we cut back.

I HAVE to have me time. Even if it's going to the store to get groceries or pharmacy.... it helps me recharge. It's otherwise challenging. The hardest part was learning how to dress her wounds in her feet. I'm not a nurse but she ran out of nurse visits and Medicare won't pay for any more. I'm squeamish around blood. Her feet are more stable now but her treatment caused a foot deformity that makes it painful to walk.

I'm so glad to see this space is here. Anyone have any tips on devices that magnify syringe markings? Right now I draw her insulin everyday and I know it's important she can do it herself.

[girl_dee]

my mom is having a bad day. I try to put it out of my mind, but its hard.

Having distractions is good.

Honestly I cannot even believe she is still alive.

[MsTinkerbelly]

I'm so glad to see this space is here. Anyone have any tips on devices that
magnify syringe markings? Right now I draw her insulin everyday and I know it's important she can do it herself.

I'm not sure if it would work for you, but I put on very strong reading glasses ( like you get at the dollar store) or I use a magnifying glass to check how much I have pulled into the syringe.

[girl_dee]

Well my mom says she is feeling a little better.

Honestly I cringe waiting to get that reply in the mornings.

[Chad]

My mom's birthday is next week. I cannot wait to spoil her.
She is doing great with her new knee. I just need to tidy up her yard a bit. Also, I will clean her house while I am there.

[cricket26]

i picked up groceries for mom yesterday she seemed in good spirits :)

[girl_dee]

it seems like most of us are looking after our mothers. .........

Mine told me yesterday she was not well and could not get out of bed the entire day. Said she had fever and couldn't breathe well.. but not bad enough to go to the hospital. I was so worried i didn't sleep all night.

First thing this morning I texted her... there is always this sinking feeling waiting for her response. She did reply that she was feeling a little better. Great i thought. .. but again she says she is just not well.

Well a little while later she sent at text to me, that was obviously for one of her
posse buddies at the home..

"Yes, i texted you earlier,,, i am better, I'm going downstairs"....

I said well thats great mom! Have a nice time with your friends..

She says " I am still sick i just think the fresh air will help me"

She will NOT give me anything positive, ever. She wants me to think she is miserable and on death's door.

WHY????

[kittygrrl]

it seems like most of us are looking after our mothers. .........

Mine told me yesterday she was not well and could not get out of bed the entire day. Said she had fever and couldn't breathe well.. but not bad enough to go to the hospital. I was so worried i didn't sleep all night.

First thing this morning I texted her... there is always this sinking feeling waiting for her response. She did reply that she was feeling a little better. Great i thought. .. but again she says she is just not well.

Well a little while later she sent at text to me, that was obviously for one of her
posse buddies at the home..

"Yes, i texted you earlier,,, i am better, I'm going downstairs"....

I said well thats great mom! Have a nice time with your friends..

She says " I am still sick i just think the fresh air will help me"

She will NOT give me anything positive, ever. She wants me to think she is miserable and on death's door.

WHY????

I went through the same thing with my mom. I don't believe even medication can help. As I've gotten older, I see why my mom felt the way she did. It's natural as you get older to see you are approaching the great unknown..some welcome it, others are frightened..In the end I think they greet it with a certain amount of relief and anticipation..From my own experience I would tell you to accept where your mom is. She does not feel well. There is a reason for it-it's called old age. Accept it and try to take it in stride and weird as it may feel to you, try very hard to appreciate and savor the good moments you have with your mom, yes even the bad moments! One day when she is gone you will be so happy you spent the time holding her hand and listening to her aches and pains. Give her some of your very positive energy..even if she doesn't believe in it. I wish the best for you and your mom<B

[girl_dee]

I went through the same thing with my mom. I don't believe even medication can help. As I've gotten older, I see why my mom felt the way she did. It's natural as you get older to see you are approaching the great unknown..some welcome it, others are frightened..In the end I think they greet it with a certain amount of relief and anticipation..From my own experience I would tell you to accept where your mom is. She does not feel well. There is a reason for it-it's called old age. Accept it and try to take it in stride and weird as it may feel to you, try very hard to appreciate and savor the good moments you have with your mom, yes even the bad moments! One day when she is gone you will be so happy you spent the time holding her hand and listening to her aches and pains. Give her some of your very positive energy..even if she doesn't believe in it. I wish the best for you and your mom<B

thank you. this helped A LOT. :bunchflowers:

[Chad]

My mom's neighbor is back saying that he will buy mom's house. I hope that he fallows through this time because I need to have mom here with me.

I have great hope that this deal will go through.


:praying: