Jeff is standing on the front porch. He likes to go outside when the weather is nice. Not that there’s anything extraordinarily pleasing about our yard—in fact, as the lowest lying lawn on the street, it’s something of a mud-pit—but he likes it nonetheless. He picks up sticks and breaks them into tiny pieces. I have managed to convince him to deposit his stick bits into a certain blue trash can that we put out with the recycling, as opposed to the regular garbage bin.
And it is probably simply my prejudice, as the occupant of a mind which seems, at this point, not to be neurologically impaired, that anyone who passes much of the day breaking sticks into fractions must be in need of some extra-curricular entertainment. Which is why, at 10 a.m. this morning, we found ourselves meeting with the program director at an adult daycare center fifteen minutes down the road.
Here’s my problem: As the primary caregiver responsible for someone who used to have an active and productive life, it’s really hard to let go of the idea that maybe he’d like to be “doing something.” When Jeff’s not breaking sticks, or bumbling through the grocery store (or other errand) with me at his elbow, he’s sitting in a chair. Dozing. Or reading newspaper headlines, which is about as far as he can get before his visual dysfunction makes him lose not just his line, but the entire quadrant of the front page.
He also really likes people. Especially middle-age to old people. Especially guys. The net effect of his reduced facial recognition seems not to be that he fails to recognize family, but rather that he “recognizes” everybody, and guys are perceived as buddies, almost without exception. So why would he not like a center full of a captive audience of instantaneous buddies?
At least that was my hopeful theory. What really happened was an example of the paradox of dementia-impaired discernment. And whether your loved one’s diagnosis is classic Alzheimer’s, or whether he has a variant like Jeff’s, this is probably something you’ve noticed: He may not know whether he’s putting toothpaste or calendula ointment on his toothbrush, but he does know when he feels patronized. She may not know her way to the bathroom of the house she’s lived in for 25 years, but she’s acutely aware when a life change seems to be pushing her closer to the margins of human society.
That’s what tripped us up. For now. It is possible that an adult day center is an idea we can revisit some day, but today he perceived the significance of the program in a very emotional way, and now he’s planning to move to Seattle.
And here’s where we see the other side of the discernment coin. For he knows, as I say, what it feels like to live under the cloud of other people’s diminished expectations of your competence. But he does not seem to know that he cannot take the first step involved in moving to Seattle, finding a place to live, and getting a job. In Jeff’s long-distant past he did just that—forty years ago he did move to Seattle, find a place to live, and get a job. But maybe I’m wrong. Maybe he does know that he can’t do that anymore. The more I think about it, I’m pretty certain that Seattle is—at some transcendent level that he does not need a full toolkit to grasp—his version of Valhalla. The place you go when you’re pretty much fed up with the row life’s given you to hoe, and you’re ready to pack it in.
There was an upside. A crack in the cloud that settled heavily over Jeff’s mood after our visit to the daycare center, where a welcome gleam of sun broke through. I reminded him of the end of his mother’s life…how she’d become extra-cantankerous, how she’d needed round-the-clock in-home care. “And what,” I asked, “would you have done if she’d refused to let someone help her? What if you’d had to care for her yourself, twenty-four/seven?”
For all the clouds, for all the confusion, for all the calendula ointment and misplaced bathrooms, he grasped my point. “You shouldn’t have to do that,” he said. “I can accept someone at the house,” he said, “if it would help you.”
“It would help me,” I said. “Thanks for being okay with that.”
And I am okay with that. At-home helpers is the plan I’ve got stashed in my back pocket for future use. When I start talking about Seattle too much, I’ll know it’s time.