I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
I guess what it boils down to is I get most bothered by the fact that you are never really *done* with this job until ...well I don't know...after the funeral??? Sad. I am just constantly sad. I do not find joy anymore. With anything or anybody...not even my grandchildren can cheer me up anymore. If they're coming to my house, I sigh and try to summon up some energy deep down. Did *my* mother EVER DO THAT?? No, she enjoyed her grandchildren at her house while *I* worked to make it happen for her!!!.... And now... I feel guilty for thinking that way.
There's no relief from this, no way out - easy OR hard.
Caregiving no longer is something you DO (and therefore could stop doing) but something you ARE. You ARE the caregiver. Everyone's lives are organized around your adherence to that role. Your sister can move away but you can not. Other people can blame you for failing to keep Mom and home, but of course they don't share in the blame because they are not the Caregiver. You and only you are. And how could you possible think of upsetting the status quo, when it's working so well for everyone else?
It's exhausting and depressing, knowing that whatever care your mother needs for however long she needs it is going to fall on you. I know - I've spent several years trying to get myself out of that same situation, with mixed success. You did the right thing to move your mother into assisted living, to take some of the burden off yourself. But there's still a lot that needs to be done.
I know my mother fully expects me to remain in place as her main support system for as long as she lives (however long that may be) and expects me to pick up the slack if her needs increase or if other sources of help dry up. She needs that assurance in her own mind, but from my perspective, it makes me feel trapped. I sympathize with others who feel that way too. And all I can say to you is "You're not alone. In fact you're in very good company."
I know many of you are struggling hard in your situations. It's nice to have a place to share and know that we all understand. Many hugs to you all. Caregivers are angels ... even at those times when you don't think you are.
But..I sure miss having someone to talk to!
MOm has profound aphasia. Very little of what is said around her or to her actually gets through to her. None of what comes out of her mouth is recognizable words. The effort to sort out even one sentence can take an hour or more....and more often that not it is just complete nonsense. I find I cannot focus my attention that completely on her....especially knowing the result is not going to be any information that is worth the effort to figure out.
I really miss conversation. Just someone to talk to...about anything.
I'm struggling with this with my mom right now, I can handle transfers from bed to wheelchair OK, I've even gotten used to getting her washed after an accident, but when she can no longer help even a little bit even a small BM in her pull up ends up everywhere. I'm up against that invisible line I drew and I'm not ready for what comes next.
The only thing that works lately is denial.
".... Mom and I do not speak much. I feel that she resents that I am her caregiver. Her happiest time of day is when my brother calls and asks for money. I hear her talking with my husband and she is so chipper. I come downstairs and ... nothing. I've been a good a faithful daughter. I thought it would be a special time for us. Now I dread it and feel guilty. Mom is easy to care for. "
This, so much, this. My mother spends most of her time giving my angry stares and refusing to speak to me. But when the dog walks into the room she cheerfully converses with him. "Oh, Riley, there you are. How was your day? etc" Her caregivers and everyone she meets tell me what a sweet lady my mother is. But she is never that person for me. And, yes, I also have a brother who only calls when he needs money and boy does she light up when he calls.
I do believe that she resents me for taking care of her. Ironic, isn't it?