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Yoga sounds great. I really feel like I need a respite . . . a spa vacation or something. Thank you!
I have an extremely boring, thankless, physically hard job where I make a boatload of money. I understand burn out, and I understand not walking away.
And we're in the boat where we can't take vacations, so there is no respite away.
I make sure I get massages, and treat my body well. I exercise, and eat well, and do something that is spiritually fulfilling to me -- I quilt. That little bit of time sewing each days gives me peace to face what I do.
So my advice is to take care of yourself. Make sure you are eating well, exercising to help with the stress, and find something that when you doing it totally occupies your mind. I know whan I am vacuuming the hallways and checking lights and doing the mindless stuff I do, I am thinking about how do I want to quilt that baby quilt, what thread do I want to use....
And if quilting isn't your thing, maybe you write that novel, or learn to golf, or crochet or knit, or even read books to write reviews or discuss at the library meetings....
I have an extremely boring, thankless, physically hard job where I make a boatload of money. I understand burn out, and I understand not walking away.
And we're in the boat where we can't take vacations, so there is no respite away.
I make sure I get massages, and treat my body well. I exercise, and eat well, and do something that is spiritually fulfilling to me -- I quilt. That little bit of time sewing each days gives me peace to face what I do.
So my advice is to take care of yourself. Make sure you are eating well, exercising to help with the stress, and find something that when you doing it totally occupies your mind. I know whan I am vacuuming the hallways and checking lights and doing the mindless stuff I do, I am thinking about how do I want to quilt that baby quilt, what thread do I want to use....
And if quilting isn't your thing, maybe you write that novel, or learn to golf, or crochet or knit, or even read books to write reviews or discuss at the library meetings....
Excellent ideas . . . I thought I was taking good care of myself, but I think the cumulative stress caught up with me. I do get bodywork, but I think I need more right now.
Quilting sounds wonderfully meditative. I live a lot in my head so something that takes me out of it is good - I do collage, and that is meditative to me but when I am worn down, I "forget" all of my tools and just go into survival mode.
My mom addressed these questions to a family member (female) who was caretaking her sister, after being told on several occasions that she was exhausted, emotionally and physically but that she could't abandon her sister cause "there was no one else to take care of her."
My mom asked her - "what would happen to your sister if you died tonite?"
This opened a long discussion, wh/ led to the conclusion that . . . even tho this caretaker had always vocalized that her sister "had no one" and that she felt "responsible" for taking care of her sister . . . when it came down to it . . . she was exhausting herself and there were plenty of resources that were available to her sister . . . including services through the local Council on Aging.
In fact, after examining the whole circumstance, the caretaker decided she had more or less created the situation as it existed - b/c she had never given her sister the chance to make some arrangements on her own or accept help from anyone else. No one had to step in, no one had to even offer to find other assistance (even for the caretaker to "take a break") b/c the caretaker had put herself last on the list and spent all her energy on making sure her sister's needs were met.
And here's the kicker: it wasn't as tho her sister had ever gone out of her way to do a thing for her - so it was puzzling why the caretaker had sacrificed so much of her time and energy for someone who wasn't even that grateful and had surely never shown her sister the same level of concern their entire lives.
I just wonder: assuming you have not been named by a court as guardian for this person, and that you are not getting paid for helping this person . . . what would happen if you just stopped helping?
Not that you need to answer that! Just wondering if you had considered that scenario.
I was a caregiver for longer than a decade and I think anyone who does this will go through these same feelings.
Here's what worked for me. I put a time limit on it. I told my sibling I would only do it for X time and after that, it was their turn. And I didn't really care how much they had to rearrange their life. I had done my share. And if I didn't have a sibling, it would have been assisted living/nursing home. By that time, my patient wouldn't know who they were or where they were so it no longer mattered.
I spent my time planning all the things I would do after my 'sentence' was up. The first thing was moving far away from everyone who wanted me to 'do' for them. For me to survive, there had to be an end to the misery.
The average time from diagnosis to death for a dementia patient is about 10 years. I gave it a bit longer than that. Forget 'services' and 'respite care' to help you out. The only thing I could ever get was a support group...... And who was going to take care of my patient while I was gone? The Good Fairy? I had one heck of a time getting to the grocery store.
I know how awful this feels. You loved this person who used to be your Mom, Dad, sibling, whatever. And it makes you feel even worse that you resent them taking over your life. I get it. I lived there for ages.
My mom addressed these questions to a family member (female) who was caretaking her sister, after being told on several occasions that she was exhausted, emotionally and physically but that she could't abandon her sister cause "there was no one else to take care of her."
My mom asked her - "what would happen to your sister if you died tonite?"
This opened a long discussion, wh/ led to the conclusion that . . . even tho this caretaker had always vocalized that her sister "had no one" and that she felt "responsible" for taking care of her sister . . . when it came down to it . . . she was exhausting herself and there were plenty of resources that were available to her sister . . . including services through the local Council on Aging.
In fact, after examining the whole circumstance, the caretaker decided she had more or less created the situation as it existed - b/c she had never given her sister the chance to make some arrangements on her own or accept help from anyone else. No one had to step in, no one had to even offer to find other assistance (even for the caretaker to "take a break") b/c the caretaker had put herself last on the list and spent all her energy on making sure her sister's needs were met.
And here's the kicker: it wasn't as tho her sister had ever gone out of her way to do a thing for her - so it was puzzling why the caretaker had sacrificed so much of her time and energy for someone who wasn't even that grateful and had surely never shown her sister the same level of concern their entire lives.
I just wonder: assuming you have not been named by a court as guardian for this person, and that you are not getting paid for helping this person . . . what would happen if you just stopped helping?
Not that you need to answer that! Just wondering if you had considered that scenario.
The person is in their early nineties and will no doubt outlive me. If I should predecease this person, then there are other family members who would have to step in (would not want to and have not responded to pleas for assistance - but if push came to shove, I think they would step up) . . .they are working full time, though, and I would not expect them to do anything now (again, I have asked and they have not responded favorably even when I asked for check-in phone calls when I was away).
It is definitely "survival of the fittest" and the person in question is far more fit than anyone else!
I was a caregiver for longer than a decade and I think anyone who does this will go through these same feelings.
Here's what worked for me. I put a time limit on it. I told my sibling I would only do it for X time and after that, it was their turn. And I didn't really care how much they had to rearrange their life. I had done my share. And if I didn't have a sibling, it would have been assisted living/nursing home. By that time, my patient wouldn't know who they were or where they were so it no longer mattered.
I spent my time planning all the things I would do after my 'sentence' was up. The first thing was moving far away from everyone who wanted me to 'do' for them. For me to survive, there had to be an end to the misery.
The average time from diagnosis to death for a dementia patient is about 10 years. I gave it a bit longer than that. Forget 'services' and 'respite care' to help you out. The only thing I could ever get was a support group...... And who was going to take care of my patient while I was gone? The Good Fairy? I had one heck of a time getting to the grocery store.
I know how awful this feels. You loved this person who used to be your Mom, Dad, sibling, whatever. And it makes you feel even worse that you resent them taking over your life. I get it. I lived there for ages.
Wow. You really did a lot. I have been managing caregiving for around 13 years, give or take . . .and I am toast. As I was doing that I was also helping to raise a grandchild, whom I love dearly (important because I did not resent doing that, but it was a lot) . . .and I was working full-time in a demanding job and going to school to get my Ph.D.
I could not do the actual caregiving (diapers and all of that) although now I am having to troubleshoot that problem and it is a HUGE problem . . .
I like your ten-year plan . . .I had no idea I was going to be doing this, I don't think anyone plans for it and then, it is inconceivable that it just goes on and on.
The person is in their early nineties and will no doubt outlive me. If I should predecease this person, then there are other family members who would have to step in (would not want to and have not responded to pleas for assistance - but if push came to shove, I think they would step up) . . .they are working full time, though, and I would not expect them to do anything now (again, I have asked and they have not responded favorably even when I asked for check-in phone calls when I was away).
It is definitely "survival of the fittest" and the person in question is far more fit than anyone else!
Those are some genetics, lol. Sounds like my family . . .
So it appears no one is really in the position to help out to the extent you are assisting . . . leaving you in a corner on getting help. What would happen if you just stopped taking care of this person? No other resources in the community? Could you announce to everyone "time out" - you guys figure it out - I am taking a break?
I mean, let's suppose you suddenly fell ill . . . what then?
Just asking some questions wh/ others really should have asked themselves on your behalf. Not meaning to intrude - you don't have to answer . . .
I am so sorry you are in this position. Anyone needs a break - a regular break! - from caretaking.
You sound fine to me. My wife and I also get weary of dealing with the world, the people, the economy. We are not retired yet but getting close. My advice. Too many people are trying to fix the worlds problems and some family members problems. You've given advice and help. Let them go. If they keep messing up, its their problem, not yours. Maybe try spending time with children. They usually aren't completely messed up yet. You might have a positive influence on them. Plus, younger adults/parents are often times "too busy" , to talk to them, listen, read to them.
Some withdraw to their homes or the golf course but this wouldn't work with me. You might try it.
Wow. You really did a lot. I have been managing caregiving for around 13 years, give or take . . .and I am toast. As I was doing that I was also helping to raise a grandchild, whom I love dearly (important because I did not resent doing that, but it was a lot) . . .and I was working full-time in a demanding job and going to school to get my Ph.D.
I could not do the actual caregiving (diapers and all of that) although now I am having to troubleshoot that problem and it is a HUGE problem . . .
I like your ten-year plan . . .I had no idea I was going to be doing this, I don't think anyone plans for it and then, it is inconceivable that it just goes on and on.
Just FWIW - the line between in-home and not-in-home care (whether in a SNF - an ALF or similar) is usually drawn at the incontinence stage.
And you are starting to paint a picture. Right now - it sounds like one of my aunts with my grandparents. She didn't have much money - and the deal was she was the one of 5 kids (and she was the youngest of the 5) who would take care of them - and then she'd get their money (about $100k when she started being their caregiver). My GPs were not particularly nice people (my grandmother was a real piece of work when it came to my mother) - but this aunt of mine did take care of them. For a long time. She endured a lot of abuse. And when my grandmother finally died at age 103 (my grandfather had died at age 96) - well there was no money left for my aunt. She died sick and miserable and broke maybe 5 years ago in a Medicaid SNF bed. Luckily - one of my other aunts and my father gave her money every month when she was still alive. So she didn't have to live and die like a pauper. But I think she would have traded those caregiving years for a life. Robyn
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