It is peaceful and serene.
Except for my mother’s disquiet. She stares in mute reprimand. Her bewilderment and resignation somehow don’t mitigate her anger. She often tries to talk—desperate guttural pleas. She strains for cognition and, shockingly, sometimes bursts forward, reaching it—“Nice suit,” she said to me, out of the blue, a few months ago—before falling back.
That is the thing that you begin to terrifyingly appreciate: Dementia is not absence; it is not a nonstate; it actually could be a condition of more rather than less feeling, one that, with its lack of clarity and logic, must be a kind of constant nightmare.
“Old age,” says one of Philip Roth’s protagonists, “isn’t a battle, it’s a massacre.” I’d add, it’s a holocaust. Circumstances have conspired to rob the human person—a mass of humanity—of all hope and dignity and comfort.
When my mother’s diaper is changed she makes noises of harrowing despair—for a time, before she lost all language, you could if you concentrated make out what she was saying, repeated over and over and over again: “It’s a violation. It’s a violation. It’s a violation.”
The numbing thing is that you see this all coming—you see it, but purposely and stubbornly don’t see it.
As it started with my mother, it was already advanced for a college friend and close colleague. As an only child, he had less room to hide. I looked on with mild concern at his helplessness. I kept thinking my situation could never get as bad as his—he spoke actually, not comically, of murder. But we all catch up with each other. All train wrecks occur on a time line.
For my mother, it began with her feet. Her complaint, which no doctor could put a useful name to or offer much respite from, was that she felt the skin on her feet was too tight. One evening, almost three years ago, getting into the shower, she caught her lagging foot on the rail of the shower door and went down into the tub. She lay there, shivering in the tepid water until morning, when her neighbor became alarmed. There is a precept here, which no doctor quite spells out: Once it has begun, it has begun; decline follows decline; incident precedes incident. Here’s the medical language: “A decrement in capacity occurs.”
But we’ll cope, of course. My mother’s shower was equipped with special chairs (the furniture of aging is its own horrid story), grab-bars and easy-reach phones installed and I-can’t-get-up beepers subscribed to. She actually learned how to fall (not falling not being an option). At the least sign of a tumble, she would sink almost elegantly to the ground, and then, not being able to get up, she’d beep the police, the affable police, who would come and hoist her to her feet, whereupon she’d fix them coffee and all would be sort of well.
And then a holiday—those unfailing barometers of family health. Thanksgiving 2009 was already a weird one. My wife and I had split earlier in the year. The woman I was seeing—and had moved in with—was coming. My children were boycotting. It was my mother who was trying to be the strong and constant pillar. She insisted she could do the job. Her neighbor—a man who had been squiring her around for many years—would load the turkey, too heavy for my mother to lift, into the oven. My sister and I would arrive before the handful of other guests to do the finishes. All was in order when we got there—the potatoes boiled and ready to be mashed in one pot, the carrots roasted, the onion custard baked—all in order except that my mother had done these preparations a week before. Every pot yielded an alarming odor. What was worse was her lack of comprehension—and lack of alarm.
Plans, obviously, had to begin in earnest. Her three children—my sister and I in New York, my brother, a software consultant, in Maui—conferred. An independent life goes into receivership—and you think, How did we miss all the failing indicators? My mother, like a rogue accountant, had been hiding much of the evidence: She could no longer tell time, nor count, nor keep track of dates.
Anyway, this is what assisted living is for, no?
We would move her to Manhattan, and, we managed to convince her and ourselves, she’d begin a great new adventure.
She was game—and relieved. The place, the Atria on West 86th Street, was just a few blocks from where my sister, an artist, lives and works. A national chain of residences for the elderly, the Atria is more a real-estate business than a health-care enterprise, providing, at hefty cost—the apartments are in the $8,000-a-month range—quite a pleasant one-bedroom apartment in a prewar building, full of amenities (terraces and hairdressers) and gradations of assistance. But it is important to understand—and there is no reason why one would—that assistance in an assisted-living facility, even as you increase it and pay more for it, is really not much more than kind words and attendance, opened doors, a bit of laundry, and your medications delivered to you. If there is a need for real assistance of almost any kind that involves any sort of calibration of concern, of dealing with the real complications and existential issues of aging people, then 911 is invariably called. This is quite a brilliant business model: All responsibility and liability is posthaste shifted to public emergency services and the health-care system.