Where does a middle-stage person live?

madfoot

My sister is 65, looks youthful, could almost "pass" for a non-dementia person if you don't try to have a conversation with her.

Up till now we have had her living in a small house with a 24 hour aide. The landlord wants it back for his son, so we have to move her in July. It is not financially sustainable for her to continue to live with this illusion of independence.

But we are stuck between assisted living and memory care. I don't think she belongs in memory care, she doesn't need help eating or anything of the sort. She is not interested in painting wooden vases from hobby lobby.

On the other hand, assistedl living doesn't help enough, I don't think, for her day to day needs. She needs meds management and sometimes redirection.

Is there any kind of solution for memory care for a younger patient who is still relatively "with-it?"

M1

Short answer, no; she is probably appropriate for memory care. My partner also shuns group activities, but we make do. She and I do art projects on our own (she was very accomplished), and we sit outside, and putter in the plant room. but she likely needs that level of support. Go talk to your potential facilities and you'll get a feel for it. There are several folks in the sixties and even one in her fifties in my partner's facility. Sadly, all of us tend to overestimate our loved ones' abilities and underestimate their need for care.

Quilting brings calm

It might depend on the AL facility. You really do need to carefully determine what level of care each one provides.

Mom does ok at hers. There’s medication management, and shower help. There are group activities- that, yes, can include painting and assembling simple crafts. This particular AL has a lot of frail elderly and people like mom in it. She’s stage 4 and is ok to stay in her apartment between meals and activities and overnight. She wouldn’t be ok to cook, clean, drive, etc. However I expect Mom will need to move within a year or two as she’s going through Depends at the rate of least 5 a day. I’m not sure how long she will be able to manage that on her own.

GothicGremlin

I'll echo what @M1 said … many of us do tend to overestimate our loved ones' abilities, and we don't always realize how severe their deficits are - probably because we often provide a lot of scaffolding for them. But once you remove the scaffolding …

My sister was right around 62 when I placed her in memory care. She was the youngest person there, and looked like she didn't belong there - but she did.

"Showtiming" (somehow pulling it all together to make it seem like they're better off than they are) for us is stressful work for someone with dementia. My sister did this, and as a result she was always stressed, but couldn't tell us why. Later we realized it was because she just didn't know what to do with herself, and really couldn't navigate a full-sized house anymore.

When I placed her in memory care, she had meltdowns at first, but once she settled down she told me that she wished she had gone to memory care sooner. I think this is because the environment there is simple and structured. Stress is reduced.

If your sister is "higher functioning" for memory care right now, she probably won't much care for the hobby lobby vase-painting kind of activities, but what she'll probably appreciate is that simpler, structured, environment.

Good memory care facilities can assess pretty accurately what level a person with dementia is at, and structure activities appropriately. In my sister's case, memory care staff knew that she had her own band for a long time, so there was much karaoke, but no coloring book activities (although that came later).

madfoot

I just think of her walking in and seeing the place … and those loud alarms. I don't know. I hate this so much!

GothicGremlin

@madfoot I know exactly how you feel. I'm so sorry.

H1235

We are in the process of figuring out AL now. The place we have picked does an evaluation prior to moving in. This helps them to see what services she will need. The cost is based on the amount of services and level of care required. I’m sure when too much help is needed they would just refer the person to MC. I think most people do underestimate the level of care needed. It hard to accept.

housefinch

I might be misunderstanding here. If she truly requires a 24 hour aide, she is getting more assistance than maximum assisted living level of care I have read about. That typically requires memory care to replicate 24/7 supervision.

Quilting brings calm

I missed the 24 hour aid part. If she really can’t be left alone for a couple hours at a time, then AL is not the place for her after all.

M1

Not sure what you're referring to with "all those loud alarms.". That isn't an issue at our facility? Yes there are two locked doors into the hnit, but they are hidden and do not alarm in the MC area itself. It's not disruptive....Maybe it's something specific to that one facility? I would definitely ask.

harshedbuzz

I think it's hard for anyone to consider placement for their LO because we tend to see them through rose-colored lenses. If she needs 24/7 care it's not likely she could "pass" for very long at all with someone who doesn't love her. That said, care always has to be appropriate to the needs of the PWD at their most symptomatic rather than a stretch for them in terms of skills.

That said it is hard to imagine a LO in a purpose designed MCF that allows PWD to age-in-place which means there will be residents across the entire disease progression from mildly confused to actively dying.

I suppose you could try AL first. But that does come with caveats. Firstly, she will eventually have to leave which means another move and settling in with new caregivers and routines. And secondly, your sister might not be able to keep up with the conversation and activities in the AL. At best, she'll be exhausted from trying to showtime and at worst, she'll be bullied by the AL meangirls who resent having a PWD move in. The latter happened to my one aunt when family made this common misstep.

Dad's MCF only had the fire doors alarmed and I never heard them go off in the time he was there. IME, alarms tend to exist in places that were not designed to be dementia facilities or where populations are mixed with elopement risk individuals tagged. Dad was in a SNF once and tagged— the poor man set off the alarms anytime he was within about 15 feet of a door. It was a PITA.

It's hard to say whether a PWD will join activities. Dad hated everything but the music programming. His DON did set up a putting cup for him which he liked. My other aunt, who had been a real introvert, blossomed in MC and did all the activities on both the MC and AL sides for several years. She especially loved the afternoons out for lunch.

HB

madfoot

Wait - there's karaoke? That's great news for if I'm ever in the same situation! (keinahora)

I really really appreciate your insight - I think I really just need to go visit several MC units and keep an open mind.

madfoot

Nah, she would be fine most of the time. She has 24 hour care at home bc she has nothing to do all day and needs direction / to be taken places to do stuff, which will be at her fingertips in MC, and because she needs someone to handle her meals. All of this to say - the MC unit, just by dint of her physically being there, will replace 99% of what the aides do.

Like I said, she can "pass." She just needs direction. Lots and lots of direction.

madfoot

Oh. To be clear, when I say she could "pass," i just mean if she doesn't open her mouth. She is not old or frail, she dresses all cute, her hair is colored and styled, she wears sunglasses most of the time so you can't see how vacant her stare is, that kind of thing. That was just shorthand for "she doesn't shuffle around in a housedress with her hair standing up like Cloris Leachman."

I am sadly all too aware that she can't "mask" or showtime. But thank you! That is a good reminder to keep myself honest / realistic.

It's most of all that she becomes enraged when we try to take her to a place with "so many old people." Which I get. She is youthful, her friends are youthful. She still has a picture of herself in her mind, and she still thinks that she can do whatever she wants, mostly because we spoil her as much as possible.

She wants to be self-directed and have self-determination. Don't we all! So I really just feel for her. She didn't deserve this. None of our LOs did. I have a particular ex who definitely deserves it, but so far he seems to be rolling around just fine. Life is hilarious sometimes.

harshedbuzz

@madfoot

I really do appreciate the disconnect between how your sister looks relative to the people you will see in MC.

That said, there were 2 outliers in dad's facility on his hallway. One was a woman who was so nicely dressed and groomed, it took me a good month to realize she wasn't employed the in some administrative capacity. She looked as if she's walked out of the Chico's catalog right down to the fun jewelry. Turns out her family hired an aide for 2 hours each morning to help her get ready for the day. There was another woman who looked really young— like not a day over 35 with no grays that required touch-ups and nary a wrinkle. Ironically, neither of these women could really converse much compared to my dad who I would say looked like a Yeti (sweatpants perpetually twisted, tee half-tucked, hair like a wild man half the time from lying in bed) except to do so would be insulting to Yetis. You can't always tell by looking.

What sort of things do her aides do with her during the day? Dad's MCF had a range of social offerings from exercise, crafts, movie matinees, weekly lunch outings, religious services, music, gardening. My aunt's facility was looser about activities and initially kept her in the AL side during the day because she was so pleasant and cooperative.

HB

GothicGremlin

@madfoot

Deciding whether or not to place a LO in memory care is difficult, with so many factors to consider, so I'm not advocating one way or another. You'll know what's best for you and your sister.

My experience mirrors many of your concerns, in fact, I could have written both of your longer posts.

Peggy, my sister, was a couple of years younger than me, so I had that to deal with too. Most people in my family look younger than we are, so Peggy at 62 looked like she was in her earlier 50s. She also work make-up, her hair was long and blonde, her nails were always perfect, and she always dressed well. You'd never know anything was wrong with her just by looking at her. And she was by far the youngest person in her memory care facility. She had issues with that, but the farther down the road she got, the more she accepted it, and even appreciated it. She bonded well with one of the staff caregivers, who would do her hair every day. Peggy often had elaborate Game of Throne-type braids (which Peggy loved). That caregiver had mad hair-braiding skills!

When I first placed Peggy, staff had me fill out a questionnaire about her life - favorite foods, favorite music, favorite movies, religion, military service - it was pages and pages long. This was how we got karaoke. 🙂 They really do try to tailor activities as much as they can. And yeah, Peggy's memory care facility was much like how @harshedbuzz describes - exercise classes (lots of chair exercises), movies, drives to nearby parks, special monthy dinners, gardening (their garden was gorgeous).

This tome-length post is my way of saying that if you decide to go that route, I think you'll find that there's a little something for everybody in memory care, and it's really not a hellscape, it can actually be quite nice.

MN Chickadee

In some areas there are group homes for dementia. While I don't often recommend them there may be a time and place such as a younger PWD who is in between. It may have more of home like feel and a mix of ages. They often don't work for families long term though. Not enough activities going on, they can't have an activities person for just 4 or 5 people. Along with other challenges. Usually only one aide on at a time, so no oversight or second pair of eyes if they aren't being professional or neglecting their patients. Tour some facilities that are both AL and MC. There are places where they provide a bit more in AL to cover that gap when someone is in between, but it really depends on the place. Some facilities will send a more functional PWD over to the AL side during the day for activities that have a bit more pep, or on their field trips if staffing allows. No matter who she is surrounded by, the transition will probably be hard and take a while. But with time it should be ok. My mother also looked and acted much younger than the rest when we moved her to MC. But there is a lot of turnover. When she moved in there was a young onset PWD who was in his 50s but he passed away within a year. Others came and went. She complained a lot about "the old people" but with time settled in and didn't notice. In the early months she was mostly friends with the staff and helped them out with setting the tables and lunch prep etc. Also consider that people with dementia have a hard time with any move and it can amp up behavior and anxieties and reduce their abilities for a while or long term. In a new foreign setting some may suddenly not find the bathroom in time, may start to wander, may lose other skills for a while. If she moves to AL and has a hard time, the structure and supports may not be there because they simply aren't staffed to that level like MC. There's often one aide to dozens of residents, where as in MC it will be a better ratio. If your resources allow you to hire your own aide to spend time with her in AL during the transition that might make it possible, but it's still kind of a gamble. Make sure wherever it is they can provide the care she needs; that has to drive the decision making, not trying to make her happy. Happiness can be elusive if not impossible with dementia regardless of where they live. Safety has to come first. Place her based on her worst days not her best, and expect the decline to continue. It's hard, I know.