Ruth: I’ve started to dread the jaunty sounds of my cell phone ringing. For the past few days, it’s been bad news. Daddy, who’s been recovering pretty well from hip surgery, has fallen three times. Since he’s in the late stages of Alzheimer’s, he forgets he’s been hurt and forgets he should use a walker. He just heads outside, into the small, secured yard where he can walk.
Twice, he’s fallen on his bad hip and had to be taken to the hospital and x-rayed. The third time, he scraped his face and had to have stitches. At the hospital, he had a CT-scan that showed some bleeding in his brain. But he seems fairly happy, his doctor assured me over the phone. “But, of course, he doesn’t make any sense at all,” the doctor said.
So, once again, he was sent back to the Alzheimer’s facility where he’s lived for more than seven years. It’s hard to remember what he was like then, in those first months, when he could carry on a brief conversation. Five minutes later, he’d repeat that same conversation. But, if you didn’t notice that, he made sense, at least temporarily.
But that’s all gone now. He can still string sentences together, but they have nothing to do with what you’ve said to him. They’re purely random.
I’m not religious, but I do have some vague beliefs about human beings having a soul, some spark of individuality and personal experience that defines us. Alzheimer’s bludgeons that vague idea. How can a soul be something separate and inviolate (and even eternal) if it’s subject to deterioration and annihilation by a physical disease? Where is our father’s soul? His face is blank and childlike, he can’t anticipate a future or remember a past. He lives in a seemingly endless series of isolated moments.
“We want to keep him walking, to ensure his quality of life.” That’s what I was told after his hip surgery. I wanted to scream, what quality of life?
But all this eldercare, illness and rehabilitation are a runaway train. Get on it — fast — or be branded as insensitive and uncaring. Talk to the people who show up, offering their Medicare-sponsored services to rehabilitate the remnants of a human body and life. Act enthusiastic about how everything is going to get better, since government-funded help is on the way. Don’t ever question whether this is a good choice (don’t even acknowledge there are other choices, like doing very little or simply making your father comfortable). The runaway train wants all its passengers onboard and properly cheerful. Don’t ever ask where the train is going or whether the trip makes sense.
I’ve always been uncomfortable around Accepted Wisdom, since you’re never supposed to question it or ask why it’s accepted or even vaguely wise. You’re just supposed to fall in line and mouth those bromides about progress and quality of life. Aside from that, you can keep your mouth shut — and along with it, your eyes, ears and brain. Here, in the battered body of an 82-year-old man whose memory has deserted him and whose consciousness is a series of random shapshots and whose former competence isn’t even a distant memory — here, we talk about quality of life. No winks, no rolled eyes, no air quotation marks. Sincerity, enthusiasm and blind, fervent belief are required, you negative twit.
So, he’ll fall again and again, and we’ll all continue to do the “right” thing and patch him together. And we’ll never talk about the insanity of modern medicine and the healthcare and insurance industries or how many billions of dollars are being spent in the last months of human lives, when spiderwebs of dementia have choked thought and memory and purpose.
I hate this and worst of all, I hate the fact we can’t talk about it, really, except behind locked doors and with carefully hushed voices.
In the meantime, I have a shoulder that’s killing me and sounds like a baby’s rattle when I move it. And yesterday, I talked to a friend of roughly similar age whose back and neck have become instruments of torture. But hey, we can still laugh about it at our age. That’s something. That I can live with.
In the meantime, Ellen is in southern Israel, beyond the internet. It’s hard to feel like a fabulous geezersister when there’s only one of us.
(Copyright 2007 by Ruth Pennebaker)