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'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.
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 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.
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 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.
Then the whole thing starts all over.. Eunice fussing over Mama 'till Mama insists she sit down!! Until Eunice sits down, then Mama says in her sweetest southern drawl, "well it sure would be nice to have a pillow behind my back" Lol. 😂
I understand the irritation you felt when she used to ask what the hurry was. On the occasions when my brother telephoned my mother, the first words she always said to him were "when are we going to see you?" - which he took literally as a request that he visit her, which made him feel guilty, which he resented. Not that it ever made any noticeable difference to how frequently he visited.
But you have nothing to feel guilty about - you're already spending much more time with your mother than used to be possible. Isn't it a sort of compliment, that she'd like you to hang around a bit longer?
I hope you do find a congenial volunteer, that would be great for your mother. But it'll still be generally true that no one is more interesting to a mother than her children are, however often she sees them.
The comment "I don't need outside help - I have you." sounds just like my mother. Setting boundaries is hard, I know. I think the only thing harder than setting boundaries with your parents when you're young and helpless is setting boundaries with them when they're old and helpless.
You need to believe in your heart that you have the right to set limits on your mother's claims to your time and energy. It gets easier with time, if that's any help. It gets easier with support, which I hope we can offer you here.
It may help if you remind her, repeatedly if necessary, that you still need to take care of your own life even though she's old now and needs your help. If she says "Why the rush?" you can always say "I have things to do at home." That is always the reality, after all. After you do her laundry, you need to do your own laundry. After you clean her kitchen, you go home to a kitchen that also needs cleaning. It is easy for elders to become very self-focused and forget these obvious facts of life, but that doesn't mean they can't be reminded. That approach actually works with my mother - maybe it will work with yours as well.
Good luck!
Mom seems to be breathing her last breath one day and is improving the next. I am not in a hurry for her to go nor do I want her to linger but I want to know when.
Right now i am living with someone who has it hot in here- who sweats in the winter?ugh