An Alzheimer’s Toolbox

I’m sitting in the courtyard of the assisted living dementia unit where Jeff lives. He is in a weathered teak chair catty-corner to mine. I’ve got my iPhone plugged into mini portable speakers, and my eclectic collection of tunes are on “shuffle.” At the moment, Simon and Garfunkel.

The picket fence surrounding this nice flowery yard is just over six feet high. There’s a butterfly house attached to it, just where another of the four chairs surrounding our table backs up. I’m noticing this in particular because of stories my fellow Alzheimer spouses tell of their loved ones piling up chairs to scale the fence and make a break for it. 

These days, I cannot imagine Jeff having the wherewithal to mount such an effort, but I don’t suppose my comrades-in-spousing had it on their radar either. But if it were I, and I wanted to get over that fence, the chair and the butterfly house could be just the stepping stones I’d need.

In Jeff’s case, his visual impairment, which stems from Posterior Cortical Atrophy being his special strain of Alzheimer’s, is a limiting factor which many of his fellow residents (the ones who wander about finding interesting objects in other people’s rooms) don’t have.

One of the things I brought with me this morning, in addition to my computer, is a jar of silicone leather sealer. Yesterday, after an episode of leakage involving Jeff’s roommate, I deemed the “dry-clean only” cushions on Jeff’s IKEA “Poäng” chair to be irredeemable, and I replaced them with the easiest care kind available, which happen to be leather. It’s more like car seat leather than leather jacket leather, and I think it’s fairly wipe and wear, but I’m still taking precautions. The silicone is really for shoes, but why not chairs too?

So everything in Jeff’s dementia-oriented “neighborhood,” including the items I brought for him, needs to be passed through the dementia-friendly filter. I think the chair is wet-proof enough. I think the fence is high enough. And I think the care–barring those inevitable moments of piled-up crises which life enjoys staging–is enough. 

In the interest of theme I will attempt, six paragraphs in, to conjure one. Or perhaps one and a half. The first part is this–whether we care for our loved ones at home, or rely on a facility, we will rarely feel that we’re doing better than “enough.” And as for the second part–a spousal caregiver does not achieve emancipation by placing the spouse in an ALF (assisted living facility) or nursing facility. He/she has simply made use of a tool among the many tools–home health services, day-care programs, helpful family–that are jumbled in the caregiver toolbox into which all caregivers find they must reach sooner or later. 

Note that second part–the ALF as a tool for caregiving. One that might be neither necessary nor appropriate in the life of every person with Alzheimer’s, but one which seems to be working for us. Maybe better than I even wanted it to. A few days ago Jeff’s brother and sister-in-law came to visit him. We sat in the courtyard for a short while before wrestling with the notion of whether we could take Jeff out for dinner. Me #1 thought “definitely not,” whereas Me #2 felt inclined to honor the wishes of Jeff’s brother who thought it was worth a try. Well, #1 acceded to #2, and we gave it a shot. Me #1 tried not to say anything as we struggled to get Jeff positioned in the car, as he faltered entering the Irish Pub (because of the dim lighting,) and as he waved his arms and said “There are communists in here!” It sounded like a joke, but it wasn’t. That was just the kind of day his brain was having.

After a somewhat tense (for me) meal of helping him grasp his Kaliber non-alcoholic beer and feeding half his chicken caesar salad to him, I petitioned our communist waitress to please hurry with the check, because it was abundantly evident to me that Jeff just can’t manage “out” anymore.

I said goodbye to my brother and sister-in-law in the parking lot, and got stuck in a small stretch of traffic jam. It was never such a relief to get him back to his relatively well-managed home. The needs of all Alzheimer people shift, and this is where ours have shifted to. I do not know whether he will ever need to go back to the hospital for medication adjustment. But now that we’ve done it once, I at least feel like I know how to use that tool. I just hope I can leave it in the box. I like this ALF tool better.