Retirement Community Question

bestyet

My husband is in mid-dementia and is OK right now. My dilemma is wanting to move to a retirement community but if he gets worse, he will need his own housing and I can not afford paying for two communities. If he starts being aggressive or wandering he would have to leave and I don't know for how long he will still be OK. Are there medications that keep him calm? I know the retirement community would be good for me but if it gets to the point I can't leave him alone,I'm not so sure it would be good for him. Anyone live in a retirement community with a spouse with dementia?

DHteam68

https://alzconnected.org/discussion/75530/retirement-community-question

When I was doing research on retirement facilities (that offer some extra care options) I discovered that both my DH with early Alz & I would have to be individually evaluated for level of independence. For my DH, it would be as if he was entering on his own and I wouldn’t be there. He could do all ADLs & follow directions when we were evaluated.

After “wellness” evaluation, the senior+ facility told us that DH would have to sign up for level 1 medication & wellness care (extra cost). I suspect that this minimum level was required for anyone with Alz

In addition, for the fully independent spouse, the multi-day check-ins & medication management rules for the less-independent spouse can take some getting used to & complicate medication management.

I’d recommend that you find out how residents are screened at entry into the community and any required care levels & costs. My understanding is that these requirements have to do with state facility licensing rules. In some states if the facility offers any kind of care services, even if the community is for mostly independent seniors, they will have to evaluate the independence of every prospective resident - and sometimes there are extra costs.

Good luck.

BPS

I considered doing the same thing but even if you get in the community most have limits on how much care they provide. If your husband starts wandering or becomes aggressive or starts making inappropriate comments or actions he would have to move. Medication can reduce some of those things but I don't think it can always completely stop it. Others here have more experience on that and hopefully comment. Knowing that this disease only gets worse and that I couldn't afford 2 communities I decided against it in our situation.

H1235

Welcome. I’m glad you found us. I can’t speak to the pros and cons of a retirement community, but I can say it WILL come to a point that he can not be left alone. You should plan for that. Your local commission on aging may be able to tell you what services are available in your area. If you haven’t seen a lawyer yet, you probably should. If Medicaid may be necessary they could help you with how to manage your assets and help determine if it’s even a possibility for you.

blacksparky

I am assuming you are talking about an assistant living retirement. If not I’m sorry for assuming. We live in a 55+ active living community where everyone lives in their house. Lots of amenities for active seniors. My DW was in stage 4 only 9 months ago and now is entering stage 6 where she needs 24/7 care from me. I have a couple of paid caregivers for about 6 hours a week come to our house and keep an eye on her while I get some respite. The point I’m trying to make is everyone’s progression is different, some may stay in early stages a long time or in my DW’s journey it was 9 months. As far as I know the medications can help with anxiety and aggression but there again no promises. Hang in there and hope you can figure out what to do with your LO.

Quilting brings calm

A retirement community normally refers to a place where people over 55 live independently but might have access to housekeeping and a club house, etc. in your case, I would suggest assisted living. Many couples move into AL when one needs extra help or supervision. This allows the ‘healthy’ one to come and go knowing their loved one is safe while they are gone. It also allows the ‘healthy’ one to be able to concentrate on their loved ones free of the worries of maintaining a household. In addition, because the ‘healthy’ person is living in site, the other person can usually be allowed to remain there longer than they might be on their one. Usually the cost for the ‘healthy’ person is nowhere near the cost for the ‘unhealthy’ person - basically the second person is paying for a fee that covers meals, utilities, incidentals, etc.

SDianeL

You would need Assisted Living and need to ask if the person with dementia can age in place. They would probably require separate accommodations when that happens. A PWD will at some point need 24/7 care. How would you provide that? AL’s are not secure. The PWD could leave. There is a recent news report of a PWD walking out of the facility at night and found deceased. Either way if you remain together you may have the expense of hiring caregivers in addition to the AL cost. No easy answer I’m afraid. 💜

Michele P

You were given good advise here. A 55 retirement community is not the same as a community that offers assisted living through memory care. A 55 retirement community will not keep your loved one with dementia safe. We live in one. There were neighbors with dementia with full time caregivers. At some point, all of them had to be placed into memory care. This is what you need for your loved one. The facilities where we live offered a huge discount if the spouse moved into the facility in a section where no care was needed. Some were as little as 1,000 a month. This included a room with small kitchen, all meals, and activities. We found it was less expensive for memory care than assisted living once the loved one needed too much care with daily functioning. You pay a flat rate for all of the care vs paying extra for every service. The license that the facility holds determines the services that they can provide to patients. Ask what type of license is held and the services provided with that license. Ask what doctors are on a regular rotation, if physical therapy is provided, skilled nursing, or if transportation is available to see a doctor outside of the facility.

Maru

I looked into AL and MC last year…toured a number of facilities in the area. Each of them said the same thing: that once a person starts to wander they are put into MC. That would have meant that if I stayed in AL I would have had to bear the cost of both MC and AL or move myself out. Ultimately, our children came up with an alternate plan which will involve them taking more responsibility. It was amazing how just their expressing willingness to help gave me such a great sense of relief.