Alzheimer's disease · Assisted living · Caregiver · Caregiving

Assisted living, part 1 / June 20, 2006

Today my sister and I visited an assisted living residence, the first of at least four that we’ll visit. I’m learning as I go along. I did quite a bit of research beforehand but there’s nothing like the experience of walking into a place and imagining your parent living there. I actually felt sick about it all morning. I had gone into work in order to have something to busy me, but we are also dealing this week with the resumption of our homemaker visits–this time with my sister being around to make sure she gets in–and so I’m never sure from one day to the next how my mother will react to that. So far she has only been mildly peeved, but I’m intuiting something brewing. The potential problem “may” be something I had never considered: Eva, our homemaker, speaks perfect English but with a lovely Spanish accent, and I’m wondering if that, combined with my mother’s hearing loss, makes it hard for my mother to understand her. “I kept having to ask her to repeat herself,” my mother told me today.

But back to the assisted living visit. As I said, I’m flying by the seat of my pants here–even with all the books and online resources available. I can’t imagine what people went through before the internet age, when there weren’t even specialized programs for dementia sufferers. Actually, I have some idea, having read Mary Ann Mayo’s Twilight Travels with my Mother which details her funny but harrowing story of trying to get decent care for a mother with AD at a time when the only option for moderate to advanced dementia was a nursing home. But today I realized that each person has to confront the prognosis and play the odds in an intensely personal way. Thinking about my task reminded me of all the people I know who have already arranged for placement of a family member in an assisted living or nursing home. From the logistics to the finances to the emotional skirmishes–so many people have gone or are going through this, all the while knowing that this place will most likely be the last home for their loved one. How do you cope with that?

I guess a good argument for doing the legwork well before any move is anticipated is that you can tell yourself that you’re doing this “just in case.” This gives a little breathing room. It’s sometimes necessary to tell yourself stories in order to get up the courage to do what needs to be done. I don’t mean telling yourself lies–if that were the case, you probably wouldn’t be dealing with the situation at all–but rather to allow yourself to entertain all possibilities, even the statistically minute but hopeful ones. Maybe the prospect you’re facing will never come to pass, maybe it will. The bottom line is that you’re dealing with the hard stuff, and how on earth can you be any more let down than you already have been?

The place we visited today is fairly new. The surroundings are cheerful without being too confusing, the lighting was not too bright and not too dim. There are only about 40 residents and I noticed the staff taking an active interest in them. When we arrived, a guitarist/singer was performing for them all in the lobby. Some of the residents were engaged and some were not. I counted about seven staff members moving around the group, singing and in one case, dancing with the folks. A few of them were wearing funny hats. The two women who met my sister and me took us through one of the two wings into a common area where we sat and talked. Once the performance was over (this was at 2:30 in the afternoon) several residents passed by, and a couple stopped to talk with us, which I liked. I also liked hearing that there are daily activities but no one is forced to participate. Most of the residents hang out together in the dining area, although there is also a beautiful “living room” and a fenced-in garden. There are private and “companion” (2-person) rooms, with a memory box outside each one.

I won’t go into the particulars–this is clearly a well-run place. The cost runs from $4200-4800 a month, everything included, depending upon the level of assistance and the size of the room. So that would be a stretch, even with the VA’s Aid & Attendance. But it is located a stone’s throw from the house where my mother grew up–it’s five minutes from my house and I pass it on my way home from work, so it would be the most convenient for visiting. And the nursing home in the complex is the only one in Rhode Island that embraces the Eden Alternative (more about that in another post).

Luckily for my immediate mental state, my mother was having an excellent day today. I of course didn’t tell her that I’d taken the afternoon off to go look at assisted living, but coming home to find her alert (despite some steamy weather) and in a good mood made the day a little easier. She enjoyed her dinner and afterwards we sat, as we usually do, in the living room while I knitted and she watched the Mass (well, only up to the sermon–at that point she decided to go to bed.) But she actually brought up the wedding on Saturday, wondering which of the three blouses she would pick to wear with her new pantsuit and shoes.

Tomorrow is another appointment, and then I’ll give myself a break before looking at the next two.

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