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cousinburnie Asked November 2017

Does anyone ever... quit?

My dad is in memory care with dementia. The place is well-staffed and well-organized and they really try hard to find ways to keep my father engaged and happy. He hates it. He calls it an institution. I used to spend more time with him and see him four or more times a week. Now that he just complains to me, I spend less and less time with him, just seeing him once on the weekend. I have no energy for him after a long day of work, even calling him has become impossible. This year has been one crisis after another for him. Up until May he was fine and lived completely independently. He was still balancing his checkbook and doing the math in his head. Now he doesn't even remember where he was born. Many things happened to him, I won't go into it. I have tried to do all the right things but he kept getting worse, and his unhappiness is the worst part. I no longer have any sense of self and am have become deeply depressed. He is just going to keep getting worse, and at some point run out of money and have to be in a place that isn't so nice. I feel like I am being sucked down with him and by my feelings of failure. I have two siblings who don't help. At this point it feels like, it's me or him. If I don't stop seeing him and try to have my own life, I'm going to end up in a psych ward. I am not exaggerating. The thing that makes it harder is that once in a blue moon, he'll act more like his old self and joke around and crack me up. The man can be very funny. And when that happens, I know how deeply I will be broken hearted when he is gone, and how I wish I could be with him.

GardenArtist Nov 2017
One of the tactics I've found when I feel down, overwhelmed, really challenged and ready to "throw in the towel" is to remind myself how much worse it could be....

I could be in Puerto Rico living w/o power for an indefinite period of time, in literally primitive conditions. Worse, I could be a Sandy survivor, still living in primitive conditions years after the hurricane.

I could be one of the people who become lost in the wilderness and literally freeze to death b/c of exposure and lack of proper clothing or gear.

Then I realize that I only have to deal with human conditions, not catastrophic weather conditions that no one can control.

And sometimes I read Chicken Soup books, for people facing challenges. So many of those people face dire situations far more serious than I do.

I think one of the hardest parts of caregiving though is the lack of good choices, or sometimes just the plain old lack of choices, period.

cousinburnie Nov 2017
Thank you, everyone, for your helpful and kind words. Thanks for the welcomes too.

I'm doing this on my own. Beside the non-helpful siblings, I don't have a spouse. My ex left three years ago. I have a lot of grief about that but he cares about my father and helps out occasionally, more than my siblings for sure. But otherwise I'm living alone, I work full time and that's all there is. It's been a long haul of things in my life getting worse for a while now, but really the last six months have been really one thing after another mostly around my father. Every time I tell people the next awful thing that has happened that can't believe it, they say, wow, you really don't get a break.

You're right, SueC1957, I miss who my father used to be, who I catch a glimpse of once in a while. The truth is, he was not a great father for most of my life, but I moved on from that and somehow we became friends about ten years ago. I miss that person who was my friend, who was interested in my life (when I had one).

You're right, GardenArtist, there are no good choices.

And talkey, you have a point, that I may be triggering the complaints. All I hear from people at the facility is how well he is doing and they can't all be lying.

Thank you, everyone, for not judging me and giving me permission to get myself back. I swear I don't even know who I am anymore, I just have a vague memory of the someone I used to be.

I wish you all relief from the pain and moments of grace.

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gladimhere Nov 2017
Yes, many of us quit. I cared for mom with Alzheimer's and her hubby general age related decline for four years 24/7 without much assistance. He was a wonderful man and stayed sharp. Mom however.... I even moved 450 miles away to be able to return to my profession. I quit, not because of mom or hubby, but because of dysfunctional twisted sisters that lived 5 and 10 miles away. I just got very tired of their treatment of me. They did not believe how sick mom was. The distance was good for me as it was impossible to visit as often as twisteds thought I should. We need to care for ourselves first. Then do only what we can for others. No guilt.

Welcome Burnie.

SueC1957 Nov 2017
Welcome Burnie,
You kinda' can't quit but you can limit the amount of exposure you have.

My mother and I never got along very well but it's been real hard watching her go through the stages of Alzheimer's. She doesn't even know who I am anymore. She has chronic headaches and she tells me about them at least every 30 seconds. There is no cure. I'm ready to loose my mind. We visit until I can't take it anymore. That's the visit, "I have a splitting headache." Dear God, even though she's in stage 6-7, isn't there anything else we can talk about? I feel at times like I'm loosing my mind too. (I'm past menopause, so that can't be it!)

I'm considering going back to the city I used to live in Mexico for a few days just to "hide". I have other family problems also and I can't remember when I've been this depressed. I can't take anti-depressants because they mess with my heart. It's hard to be a faithful Christian when you feel like your life is crumbling around you. I just wish I could make all this go away. I completely sympathize with you. Sometimes you just want to cry.

I thought this time in my life would be easier (I'm 60). I thought all my problems would be solved and I'd just "coast" until I retire. The next 5 years seems like an eternity. I don't want to watch my mother turn into a vegetable and have to go through the other family difficulties too. Where do we go to give up?

We get together here and draw strength from each other. No one else understands.
Do what you need to do for self preservation. Don't feel guilty. You miss the dad you HAD, not the person he is now. You're in mourning, as I am. But you have to take care of yourself to keep your sanity. Hang in there. Keep posting. Do something good for yourself. You won't loose your mind, it just feels like it. :)

anonymous144432 Nov 2017
Cousinburnie, if someone had told me that my life would go where it now is, I'd never have believed it. I took care of mom in my home for 3 years. I was at a very low point last year at this time with mom still at home with me. Since we placed her in a nursing home in January of this year, it's truly like a weight has been lifted. I actually feel fortunate at this point since I was able to officially retire at 62. There's not much more going on in my life socially than before, even with mom out of the house, but I'm fine with that. Two months ago, I seriously started walking outdoors daily like I used to do, rain or shine. I've lost 15 pounds, and my mood has lifted tremendously. I plan to continue this until I can't walk anymore, lol. I live close to the nursing home and actually do visit her daily at dinnertime and feed her. It's a duty I don't seem to have a hard time doing, though that could change. Her dementia is such that she probably doesn't know who I am most days, and I'm actually glad about that for both our sakes; makes it easier to have the visit and see that she's comfortable. She's adjusted as well as can be expected; nobody truly wants to be there, I'm sure, but God knows it's livelier, brighter, probably cleaner than things were here with just me to try to entertain her. The folks there really do their best to try to work with her, and she can be a real handful some days. Dumb as it may sound to you, I hope you can do something as simple as take a walk once in awhile. God bless you.

cousinburnie Nov 2017
Update: I saw my father this morning. It seems that the needs meds have started working as he was slightly more engaged. I told him I was going on a little vacation and he wished me a nice time. It was the first real exchange we'd had in weeks. So I am very, very thankful for that. Happy thanksgiving!

talkey Nov 2017
Cousinburnie, it's too much, too fast, and all alone -- even if you have a supportive partner or spouse, it's not the same dynamic as support of a sibling. And I don't know if it's harder to be in this alone when you have siblings as opposed to those who don't. But watching -- daily or weekly or monthly -- the decline of your parent, alone, when you do have siblings, is very sobering and unjust. In my case, my siblings were there for lots of help when they were young adults, both from my parents and from me. Now I'm walking thru this alone. My husband doesn't get it. He will help occasionally if I'm very direct, but I alone know my dad and see the fear and loss that he faces. You must take care of yourself, as others have said; else, you'll be no use to anyone. Dad's facility has felt that my visits (daily) were a trigger for his complaints. (I'm the fixer, so let's find something to fix... And he's fine when I'm not there.) I have changed some of my responses, and it's helping. I still go every day bc I know our time is short. But if I needed to back off to take care of myself, at this point, I would. You're not a failure -- he's being taken care of. And now you can take care of you.

NYDaughterInLaw Nov 2017
“Self-care is never a selfish act—it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others.” - Parker Palmer

Gershun Nov 2017
It doesn't help when you have siblings who don't help. I hear ya there. I had one sister who tried to help by driving me places but the others........sweet didly. I wouldn't have minded so much if they weren't such a bunch of hypocrites. Oh so sad about Mom but you wouldn't know it from their actions.

You could give up and just throw in the towel or you can just take it a moment at a time. I find if you imagine a whole lifetime of something it seems unbearable but if you live your life in increments it's so much easier. You can handle anything for another 5 minutes, right? Noone knows how the future will go. My Mom's death was unexpected. I thought she would have lived much longer. I'd give anything to have to worry about her again.

So, live day to day, not as if this is going to continue forever.

GardenArtist Nov 2017
"I swear I don't even know who I am anymore, I just have a vague memory of the someone I used to be. " I think a lot of us feel that way, and I think it's part of the progression of caring. I've thought often that I am so far now from the person I expected to be, so far from living the retirement life that I expected to have, and that prompts me to think more creatively about integrating at least some aspects of that person and life back into the current situation.

When I go upstairs to my "studio", with all the fabric, yarn, patterns, clothes I've made since I began sewing at 13, I see the foundation for my "old self", and it does help balance the existing situation, which isn't going to be forever unless I die first.

But sometimes just "escaping" to my studio as I call it, helps me remember that at one time I had none of that, created it, and it's still there for me when I can get back to it.

I used to love the JAG programs; I thought they were just so uniquely and realistically representative of military people who deal with the same problems we do but even more b/c of their professions. In one episode, one of the officers comments that he's "so far from what he used to be he hardly recognizes himself." That's not the specific quote, but the jist of it.

It was a good reminder, and insight, into the fact that we caregivers aren't the only ones whose lives take unexpected turns. It helps me keep perspective and remember that mid-course corrections are frequently possible.

Burnie, try spending a little more time on yourself, gradually, even if it's just 5 minutes, then 10 minutes. Retreat and relax. If you have a whole day, as I sometimes take, it's literally a miracle regenerator and you can return to the caregiving with more emotional and mental strength.

This probably sounds simplistic, or those who have more challenges to face than I could easily think, "well, she's doesn't take care of two parents with dementia", or something like that. And that's true, nor do I know if I could handle it if faced with it.

But from my situation, I'm trying to start little and work out respite and restoration, and for me, it's a lifesaver, and I hope that my experience will help others facing caregiving burnout.

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