
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?
it’s really too bad, so many of us are in difficult situations.
I know there was a book about breast cancer called "The Long Goodbye", and I'm sure it's a horrible disease, I don't want to take anything away from anyone who has had it or lost someone to it, but I think dementia is truly the long goodbye.
hearing loss and cognitive decline/dementia often go together.
they know they have quite a lot of “power”.
sometimes they’re unfriendly. but they know we can’t replace them easily.
it takes time to train new people. very hard to find honest, hired caregivers who don’t steal in your home. we don’t have cameras at home, but we know stealing happened. the current caregivers do the job well, but they’re quite unfriendly sometimes.
i would fire them. but...
we need private caregivers. they know that.
i hope i find some good alternatives at some point.
it would be best of course:
a friendly, competent caregiver. i need to find better caregivers!!
it’s unfortunate to be dependent on these people.
hugs to everyone!
i hope your saturday is good!!
Best wishes to you !
And that my brother is just living his life with not a care in the world for what is going on.
Oh, did she? I don't.
None of these things are things I'm doing for MY life. In fact, it's an accepted family fact that this IS my life. I'm made to feel selfish if I even suggest I get a day to myself without having to think about all of this stuff. One day to fill my head with whatever I choose, not filled with the needs of someone else. This is a Herculean request. Often met with exasperation, excuses about why they can't chip in, how hard it would be to come over and stay here for longer than an hour, etc.
It's all very complicated and I guess that's normal when you care for elderly parents. There are resentments and anger and hurt feelings and, generally, one person does get stuck with the majority of the work. I'm sure it goes back to family dynamics and childhoods, etc. but, boy, I hate to say this...I wouldn't wish it on anyone.
" the amount of mental energy and space in my brain that takes up that isn't mine anymore."
That's what got me the most. Even over two years later the estate is not quite wrapped up. More of my brain space is mine now and I look forward to the day when the tangibles I still have to do are finished.
I don't think people who haven't been there get it. I am trying to spread responsibilities among my kids so no one gets it all - even if I have to hire someone to do some of it.
As you have often said, do something good for you today.
2) Defrosting meat in cold water and a plastic bag, he turns the heat on under the pan.
3) He piles plastic tubs and boxes up, in the middle of the kitchen, and the largest goes on top. I cannot access stove.
4) I am cleaning and organizing, clear out a space, he puts stuff in the space which prevents me from organizing.
I don't know how he sneaks to do all this, when he never leaves his computer or cell phone.
Only a small example of daily struggles.
Now she quietly sits and watches tv with me. I do not miss the narrating. I do miss the conversations we had.
But I'm careful who I express these thing to. When people say, "you should be glad you still have your mom."
Cannot see me as a GROWN, INTELLIGENT PERSON...just her "little girl." :/
Doesn't want to accept the fact that she has a VICIOUS temper and acts like a 2 year old at times.
Wants everyone to think she's really a nice, friendly caring lady with her mind intact. (To the best of ours and doctors' knowledge, she does have her mind but she would literally kill someone if her "secret" was discovered.) Keeps her temper a secret.
Has admitted she needs help, but then when help is given, isn't always willing to cooperate.
for moi: the constant changing of their minds: I bought them new duvets,
dialogue:
yes ok I want it, (so I make the beds),
no I don't, (so I removed them),
now, can I get them back....
moi: suuurrrre, tomorrow.
It does more harm than good to over humor them because it complicates things unnecessarily for the person with dementia.
If you've made the bed, it stays made. It does get done again.
When it's time to get dressed (depending on how advanced the dementia is), you offer two choices. Not let them look through a whole closet. Unnecessary complications.
Repeating the same question over and over again in a loop. Don't answer every time.