Mom is 64, living with dementia and becoming more shut-off

KelD · November 2023

My mom is 64 and has dementia. Recently, we moved her out of her condo and into an independent living community. Problem is, she's focusing on the fact that she is 15-20 years younger than most of the people living there. She's become more insular and cut-off because of this. She does not want to be around old people is what she keeps telling me. She has anxiety and mild mood swings throughout day.

Does anyone have insight into what I could do?

Are there such things as independent living communities where people are under the age of 75?

harshedbuzz · November 2023

@KelD

IME, the any 55+/senior community is going to have a mix of ages. There are none "specifically" for 60-70 where they make folks leave. You can sometimes find a slightly younger mix at a brand new facility, but at a well established place she will be surrounded by older folks. Sadly, I am having the opposite issue; I moved my 86-year-old mom to a 55+ community where the average age is closer to 73 with many younger and still working. The place is 25 years old; it's a mix of 85-95 year-old original owners and 70-somethings running all the boards and clubs. If I take her to the pool, everyone is friendly-- with me. She's invisible.

How is the IL different than the condo in terms of support for her? Most of the ILs here offer not advantages over owning a condo aside from meals and weekly light housekeeping. By the time most folks are diagnosed with dementia, they are more likely to be a candidate for enhanced assisted living or a MCF. That said, dementia brings apathy as one of its key features, perhaps she wouldn't be any more social if you did find a unicorn facility peopled by folks just her age. I wonder if her isolation is more about being ignored by residents who don't care to interact with someone who can't keep up with activities and conversation. I saw this when my cousin moved mom into AL when she really needed a MCF.

HB

M1 · November 2023

Welcome to the forum KelD. I agree with harshedbuzz, i suspect your mom's expressing feelings of isolation is probably her indirect way of telling you that she needs a different level of support in her living situation. She may need the planned activities of assisted living or even memory care. The complaint about the age of the other residents is likely a red herring.

Quilting brings calm · November 2023

My MIL( no dementia) was 86 and still complaining that her fellow residents were OLD. They were her age… but she never thought of herself as old.

Let me ask this: why did you move her from her condo to the IL? because you felt she couldn’t maintain a home? Needed help with cooking and cleaning? activities? Supervision?

Many ILs are for people perfectly capable of living on their own who just don’t want to maintain a home. Some offer meals, housekeeping, laundry service. Many don’t offer any of that and are basically an apartment complex with a clubhouse.

I think the level of care might not be as much as she needs. She might not be able to keep up mentally and emotionally with any members that are in her age group and she ends up with the older members and that’s causing her anxiety.

harshedbuzz · November 2023

@KelD

I can really appreciate as a younger person called to be caregiver entirely too soon, that it would be extra difficult to imagine your mom in a care setting peopled by folks her own parents age.

That said, care needs need to drive the decision around placement. Specifically, you need to set her care level for when her symptoms and behaviors are at their worst-- not her baseline and not "mom on a good day". When dad was in MC, there was a younger woman (she looked maybe 40) on his hall. I don't know what sort of dementia she had-- perhaps a very EO or a TBI but she seemed about stage 6 and seemed to fit into the community well. A few of the older ladies doted on her.

HB

Emily 123 · November 2023

Hi KelD,

The effects of the disease are obvious (memory loss) and hidden (apathy, inability to reason through an issue, loss of empathy). The person with disease will try to adapt, but will struggle, and possibly start to withdraw. Consider this: Your mom is unable to retain any new information, because the disease wipes out the pathways that allow her to do that. So for her, recognizing and navigating any new environment is going to be hard because it will look unfamiliar to her every day, and she'll struggle to learn a new routine. Same thing with being put into social situations--she won't remember meeting people, or any details about them, so she will struggle to socialize, and people may tend to ignore her when they realize she can't keep up with a conversation. The anxiety and mood swings are likely related to being in an environment that's too challenging for her now, no matter what she says.

When we first have parents who need help, we very often are swayed by what they tell us. But they may not be aware of the extent of their losses (anosognosia) and there's a steep learning curve for the family as they try to figure out what the best support will be for them. The person with the disease is more successful when they have a sameness to their day. Even small decisions or tasks will become challenging, and so routine becomes their friend. With a diagnosis of dementia it's probably better to get mom to an assisted living that has memory care available (lots of good threads to search here about what to look for). You may also want to look to see if there are any residental care homes that might be nice.

These helped me::

https://www.smashwords.com/books/view/210580

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

And maybe watching some of these:

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Anosognosia https://www.youtube.com/watch?v=5nw3YUDQJuY

Teepa-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg

Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

Stage 3: https://www.youtube.com/watch?v=TIkTO4d8YyI

Moderate stage: https://www.youtube.com/watch?v=6cZTgG6kDjs