Caregivers and Stress

[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.

[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]

Originally Posted by 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.

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.

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]

Originally Posted by Kelt

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.

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!!

[MsTinkerbelly]

Originally Posted by Kelt

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.

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.