Anyone Living in Assisted Care with LO?

WIGO23 · April 6

As I continue my research on possible future options to meet my DH’s needs (and mine), I would like to hear your experiences if you or someone you know has lived in assisted care as a couple —-one healthy and one with ALZ. Some care facilities allow this and some don’t in our area. But, as you know, the real information comes from those living it, not those marketing it. Once again, thank you for any information you care to share.

harshedbuzz · April 6

Assisted living can mean different things to different people making it hard to answer the question. Do you mean a personal care facility where medications are handled, optional meals/weekly housekeeping are provided and there's a daily well check with daily assistance with ADLs available or do you mean memory care?

There was a gentleman in our IRL support group who lived in a CCRC with his wife who had dementia. They started out in an IL apartment which was basically like living in any apartment— the DH was responsible for everything but exterior chores. When she got worse, he "upgraded" AL in the same apartment. This got them prepared meals in the dining room, weekly housekeeping and meds management (he was a retired physician who didn't need this, but it served as their daily "well check". He was able to add laundry and hire aides to allow him to go to his clubs and meetings but TBH, it wasn't perfect. He still had to provide the bulk of her hands-on care and gained zero opportunity to leave spontaneously if his wife was agitated. He didn't have to cook or do laundry but was still a 24/7 caregiver unless he was able to schedule respite ahead of time.

HB

SDianeL · April 6

be sure to ask if they allow him to age in place as he progresses. Will they provide 24/7 skilled nursing care for him? If not you will need to hire caregivers which is very expensive. Remember an AL facility isn’t locked and secure so he could leave and wander. For these reasons many don’t choose this option.

WIGO23 · April 6

https://alzconnected.org/discussion/comment/269751#Comment_269751

Assisted living is quite different from memory care. I stated assisted living. No healthy spouse is allowed to live in memory care. But some facilities or communities do allow a healthy spouse to live with their partner in assisted care apartments.

sandwichone123 · April 6

My dh's memory care is licensed as assisted living, and for a price I would have been able to stay there with him. I did consider it, but I would have had to maintain my own house both for my son who lives with me and to have a place to return to. I never did it, but I know there was at least one couple living there for a time where the spouse was healthy.

Karen711 · April 6

Hi Wigo23- I’m not living this yet but I’m anticipating the day when… . I just toured a place near me that offers independent living all the way through memory care. I have my own health issues that make caregiving for my DW increasingly challenging and so I’ve had to consider memory care for her as I’m getting more and more worn down. My DW is solidly in Stage 5 with shadows of 6, yet amazingly healthy and it’s crushing to think of placing her. One of the ways I’ve thought I might make it more “palatable “ to me (I know she’ll hate it and probably hate me for it) is to move both of us; her to memory care and me to independent living.
I’ll look forward to hearing responses to your question.
💜

Quilting brings calm · April 7

I’m sure ALs would be happy to have a healthy spouse living there for whatever the second person fee is for an apartment. When my mom and step-dad moved in to the AL, she needed a lot more help than he did. He was still driving, doing the grocery shopping etc. I saw several couples there where one spouse was healthier than the other.

I also know of one couple that moved into memory care and only the wife needed it. The husband didn’t want to leave her. He could come and go as he wanted - he just had to have the staff buzz him in and out. The fee for him was set lower - basically to cover room and board. The director mentioned it to me when I was looking for a place for my parents before I settled on the AL.

harshedbuzz · April 7

@WIGO23

I was just asking because 1) in my state, both "assisted living" and "memory care" are licensed under Personal Care and 2) some folks use assisted living generically or even euphemistically to describe a secure MC setting.

Dad's MCF has an option for a non-dementia spouse to reside with their PWD. There is a double suite in each neighborhood for that or a sibling share.

HB

WIGO23 · 2:37AM

I wanted to share with you all something I found astonishing. As I continue to speak with care facilities about costs and options of a healthy spouse living with one with ALZ in Assisted Level Care, here is what I found. Two facilities said it cannot be done. Why, I wonder? If the healthy spouse is willing to live in assisted care without needing it and pay a second person rate, why doesn’t that work? It would seem that the second person rate could be reduced since services are not needed. The other person receives the care that is being paid for. This helps the healthy spouse and helps the patient.

One facility said yes but you both pay the assisted rate even though the healthy person does not get the services. This particular facility would be $14,000 per month! And this is after a significant entry fee.

Another facility said you could live in independent level care level paying the couple’s fees of $80,000 per year and then be required to hire home health care of approximately (or more) for an additional $80,000.

Who can afford such fees and why wouldn’t you want to keep couples together as long as they wish to be?

I understand that Memory Care with its lock down aspect as well as being rooms not apartments are not suitable for couples. But if you can manage with Assisted Living care, why make it so expensive or not allow couples to stay together?

Goodlife2025 · 3:44AM

This has been an interesting conversation for sure and just confirms for us there will be no assisted living or memory care facility. The costs mentioned are beyond considering.

harshedbuzz · 11:13AM

@WIGO23

I can think of a couple of reasons why this would be discouraged.

The first might be liability. If they're in the business of providing care and a PWD is harmed because of something a spouse did, they could be held liable since they were responsible for that person.

I could also see where the non-dementia spouse, acting as an advocate, might impact the amount of time given to other residents especially if they are chatty or need something themselves.

But I think the bigger issue is that of having a PWD in the AL population. IME, the general elderly population isn't especially accepting of those with cognitive impairment or dementia— they can be pariahs. IME with an aunt who was placed in AL rather than MC, inclusion did not happen. Aunt couldn't keep up with conversations at mealtime and activities. The other ladies went middle school mean-girl on her.

Even folks here, who presumably are more thoughtful on the topic, sometimes comment how hard it can be to tour MCFs and see PWD who are further along in the disease process. Often the spouse or adult child struggles to accept MC as appropriate because they believe their LO looks younger than the rest of the residents. I'm sure the marketing team know this and work hard to present as active retirement for those who need a little assistance.

These places, even the not-for-profit ones operate as businesses. If they can sell you an AL and MC for a spouse, they would absolutely do that. I don't think preserving couples in the same unit is a goal; they probably consider the same campus as "living together".

HB

WIGO23 · 1:58PM

harshedbuzz, I agree that keeping couples together is clearly not a goal but it should be. If what you are looking for is a “campus style community”, no more home maintenance, light housekeeping, easy access to activities and your PWD is high functioning, then why separate people?

Assisted Living is not for the advanced stages of dementia but it is totally suitable for the early stages. It can provide community and activities all in one place making it easier on older people to obtain. Again, bottom line is our care systems are designed not for consumer’s needs but for profit.

Anyone Living in Assisted Care with LO?

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