Am I doing it all wrong?

CJ56 · October 15

My mother is 89 - diagnosed this summer with early onset. We moved to the house next door last year in an effort to have her age in place as long as possible. Everything seems to be accelerating now.

I've been noticing cognitive decline since 2022. She scored 26/30 last year and 21/30 this year on her MMSE which seems like a fast decline.

We took the car away last month - not as difficult as I expected but still stressful.

The biggest challenge right now seems to be the withdrawal. She does absolutely NOTHING all day long unless I take her somewhere. She just sits and stares - sometimes not even getting out of per PJ's or bathing. She no longer does puzzles, cleans or works in the yard - all things she used to do. She only watches TV for about an hour (5 o'clock news) and rarely listens to music anymore. She doesn't get on her computer either - like she used to. She rarely goes to church now and only has coffee with her one friend once a month now (if that).

I tried to get her to go to the Senior Center in town - community gathering - but she doesn't want to go. We've reached out to the church to see about having someone visit once a week. And we are working on setting up an iPad for her to see if she will engage in games or youtube videos.

I intended to have her age in place as long as possible then likely move in with us - before memory care/assisted living - but now I'm wondering if the (more forced) social interaction and personal care at assisted living would be better NOW?

Any personal insight? Thks.

M1 · October 15

Welcome to the forum. The "doing nothing" is a big part of the disease -it's both apathy and loss of executive function. She doesn't initiate activities because she can't, and she also can't sustain attention if someone else initiates. But she's probably quite content doing nothing- it may be more bothersome to you than to her. There's no proof that social engagement will slow her decline. it sounds like she's at a more advanced stage than you realize- we all tend to overestimate our loved ones' abilities.

where you house her may depend on what's best for your whole family. It doesn't sound like she's safe to be alone, would someone always be with her if she lived with you? If she can afford memory care (and she probably needs memory care as opposed to assisted living), you may want to do it sooner rather than later.

NizhoniGrrl · October 16

She may also be depressed. What meds is she taking?

psg712 · October 16

Withdrawal from social interactions, inability to initiate or sustain usual activities, neglect of personal hygiene ... these are all factors that led to my mom’s move from AL to MC this year. AL didn't "force" any social activity, and even when they did get her to sit with a group doing a game or craft, mom didn't have the focus or understanding to participate.

At this stage, she seemed unable to form new relationships or learn new tasks. Sadly, she has forgotten how to do basic personal tasks such as brushing her teeth. Memory care has been a blessing by providing a secure and supervised environment for her.

If your mom doesn't do puzzles or watch TV, I doubt that she would start to do games or videos on an iPad. Yes, have her evaluated for depression, but I agree with M1 that it's probably progression of dementia. It's just too hard for her brain to do all the processing needed for her usual routines and relationships. It is hard for us to watch. I hope that you find the care situation that is best for your mom and your family.

mabelgirl · October 16

Recently having gone through 2 hurricanes in 2 weeks my mom’s ALF lost power. This forced her out of her room to be with the others for a couple of days. She hardly ever left her room before. She refused to go to my one sister who did have power. We noticed she was “interacting” with others and seemed to be happy. We thought what a blessing a disaster left she’ll socialize more now. Power was restored and lo and behold, she’s back to cocooning in her room! I really think it’s more comforting to her not to have the busyiness others bring. Then she can call and complain about how bored she is in private! Prayers for acceptance.

Quilting brings calm · October 16

Even in an AL she would spent blocks of time during the day in her room if she chose. There are activities, but no one is forced to go. There are meals, but meals will be brought to them if they don’t go to the dining hall. My mom has anxiety and depression. She’s on meds for it - but truthfully she is incapable of the thought process needed to work her way through it. She can’t do any kind of mental exercise about ‘what’s good in her life’ because she can’t remember what she did yesterday.
You can’t make them happy- all you can do is try to keep them safe.

CJ56 · October 21

https://alzconnected.org/discussion/comment/225685#Comment_225685

I thought about that. She is not taking any antidepressants.

CJ56 · October 21

Thank you for the insight and advice.

housefinch · October 22

I would get the legal/financial planning done to have MC as an option, if it’s possible. Sounds like she’s no longer able to initiate activities independently and probably needs 24/7 supervision. She wouldn’t know how to respond in an emergency, etc. I doubt an antidepressant is going to magically fix this.

Am I doing it all wrong?

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