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.

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.

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!!!

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:

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.

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.

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.

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...

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.

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- 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.

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

((((((((((((((((((((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...

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.

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

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....

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.

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.

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:

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.

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)

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

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.

Saw this great little video on PBS Newshour this evening:



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.

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?

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.

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:

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

...
 

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:

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.

Caretaking and Aging
 

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.

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.