This disease sucks

Anonymousjpl123

My mother has some form of dementia or Alzheimer’s. We are still waiting for formal diagnosis, mostly because she resisted doctors so long so when she started going it was like starting from scratch. She sees a neurologist again in July.

Her cognition is getting worse. She lives in AL and calls me asking when I’m picking her up to go home because it will rain (not sure where she thinks that is). Other days she is fine.

incontinence is a huge issue, we’re working on it.

She gets confused about who people are.

Her friends call me worried about the changes they hear on the phone.

I constantly feel guilty she doesn’t live at home with me, but she would be 1000 times lonelier in my house (I don’t have other family here).

I really wish we lived in a society where there were better solutions for aging people

MN Chickadee

Agreed. Although my mother wasn't happy at home either. She just wasn't capable of happiness during the middle stages of Alz. In later stage 6 she mellowed out and had settled into her facility and seemed content. I hope your mom makes improvements. My mother also flipped out about the weather during her adjustment period. She would call saying we had to come get her due to rain or snow, and then when it really did rain our snow outside she really got worked up. It sounds like you're doing your best for her, that's all we can do.

harshedbuzz

@Anonymousjpl123

I wonder if your mom's living situation is part of the problem. Is this a hospitality-model AL or a higher acuity MCF?

AL is a poor fit beyond the very earliest stages of dementia. Staffing levels and activities won't be appropriate for a PWD and other residents will likely avoid social interaction with those who can't keep up with games and conversation because of a cognitive shift. She might do better in a place where she gets more attention and assistance.

If she has reached the point where she's incontinent, she may be asked to leave soon anyway. What do you mean by "working on her incontinence"? IME, unless you are there to escort her to the toilet every 2 hours, there is no fix for this beyond Depends or other incontinence briefs/diapers.

HB

Anonymousjpl123

first thank you both for taking the time to respond. This is the only place where I feel people actually understand what I’m going through.

@MN Chickadee it’s weird because she has settled in, in many ways, and is sooooo much better than she was when she lived alone. It’s just exactly what you just said: she calls me with an “emergency” almost every day, which is often the same non emergency as the day before. I know she is frustrated and doing the best she can. I’m certainly doing everything I can think of. It just feels like there could be something better, but maybe I’m wrong.

@harshedbuzz its an AL with a memory care unit on site. One of the things that appealed to me is that there are a lot of early to mid stage Alzheimer’s people there. My guess is 60-70% of the AL residents have memory loss. She has made 2 or 3 friends she eats with every day (she’s 82, ones 86, and one is 91). They seem to genuinely support one another. All have some cognition issues.

For the incontinence, “working on it” means after she acknowledged it (which I was so grateful for) and we actually talked a bit about it, I bought her a bunch of different types of protective underwear. She hates the Tena, likes the washable ones somewhat more, and I told her I could order her a few different types to see which she likes best. It’s a HUGE deal that she is willing to wear them. that’s partially why I’m not sure what stage she’s really in: she is conscious enough to know she is having accidents, but was literally having them in public (hence the discussion and switching out of underwear). That has to suck, knowing on some level you are off, but totally not knowing on another level. Example: she is happy wearing them (relieved they work), but has called me every day to tell me about this new “problem” as if it is literally the first time we’re talking about it. When I mention how glad I am that they are working and should I get more, she says “yes that would be great.”

So she calls each day with no recollection we’ve been discussing it. When i remind her, she does seem to remember a little. It’s like that with a lot of things. Like where she lives for example. Half the time she thinks she lives at my house.

I don’t think she’s ready for memory care, but I know that’s where she’s heading. The staff agree, and we’re all watching her (the staff are great at this place, know the residents and families,l and there’s a lot of contact$. She still wakes up, dresses herself, gets to meals, and socializes in the common area for a bit. And she does like her apartment.

The part that sucks is just how confused she is so much of the time, and watching her get worse. Does that make sense?

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Anonymousjpl123

Thank you Victoria. I do need to start reading up on the disease, and learning more, and getting out of my own head about my particular situation (more knowledge/facts, less stressing about the unknown). I clicked on that e-book and it's a great resource.

I didn't think about that with the washables. I wish they made the disposable ones nicer! Maybe I'll find some nicer ones.

The staff do check in on her, and they do housekeeping 2 times a week. I know that you are right - being agreeable and soothing, not "don't you remember we talked about this" - is better. This is all still new to me and I confess, sometimes I do fall into that. I try not to be too hard on myself, but I do know how truly unhelpful that response is.

I do appreciate all of the comments. I know I probably sound repetitive. I just have to stay grounded in getting through my day to day while also being mindful of what my mom needs - and when her needs change. Again, I so appreciate this forum. It eases my mind.