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.
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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.
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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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. :)
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.
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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