Fade to Light: One of the most terrifying aspects of Alzheimer’s disease is that those afflicted can seldom tell us what it is like
October 26, 2012
LOWELL JENKINS leans back in a rocking chair in his condominium, sixteen floors above the crossroads din of Yonge and Eglinton in Toronto. He is wearing a pink sweater against the threat of April rain, and tapping a pencil on the knee of his new jeans. A mug of black tea sits on the kitchen counter next to a tall glass of daffodils. But the golden years calm is illusory: Lowell is unsettled as he studies his decorated refrigerator. Below valentines from his grandchildren (“I Heart U Grandpa Longhair”) hangs a colour-coded image of the brain. “Something was bugging me,” he says. “I wanted to match some information with what was going on.”
Each lobe is described so briefly—the hippocampus is the area where Alzheimer’s disease starts—that for Lowell the image is less instructive than it is a blunt reminder, a signpost he passes repeatedly whenever he is in a roaming mood. Now seventy-eight, he is approaching five years since his Alzheimer’s diagnosis.
“I’m an example of the more pronounced…” he says. “Hmm.” With both hands, he holds the pencil horizontal at his chin, his thumb and forefinger pinching the eraser: “See how it gets in there? ” For the retired social work professor, broken ideas are anathema. He has never needed so much time to locate the right words; nor is he accustomed to having the search turn up nothing. “You think you’ve got things under control, or at least managed, and then you find you don’t even… you can’t…” After several beats, he asks what we were talking about. I point to the brain on the fridge: “I was just curious about that.”
“Me, too,” he says. “I’m trying to understand what’s happening to me.”
IT IS A MONTH LATER, and Lowell’s wife, Julie Foley, has left work early to drive him to an appointment with his geriatric psychiatrist. She also has a background in social work; a former CEO of Osteoporosis Canada, she has for the past year and a half led a team hired by the Ontario Association of Community Care Access Centres (OACCAC) to assess integration of the in-home services the agency arranges for provincially insured patients. She checks her laptop one last time at the dining table that serves as her home office, then steers Lowell to the front hall. He steps with vigilance. Mobility is a creeping casualty of Alzheimer’s, and even before a couple of recent minor falls heightened his caution he moved like a mechanical toy stiff at the hinges. Julie eases his braid of silver hair away from his denim shirt collar. As she sets a red scarf loosely around his shoulders, Lowell, a few inches taller, looks at her through his eyeglasses, which rest low on his nose. “I know there are things that need to be done,” he says, “and Julie does them, so…”
She smooths the scarf against his chest. “So we’re okay,” she says.
In the stop-and-go midtown traffic, Julie rests her right hand on the automatic gearshift—an old habit, perhaps—but from time to time she moves it to Lowell’s thigh. The sunroof is open to a clear sky, and the light angling through is cut by the shadows of trees, hydro poles, and strip mall signage. Lowell’s eyes are narrowed against the flickering, and he doesn’t notice when one of Julie’s artificial fingernails falls off in his lap. “It’s amazing I can still drive like this,” he says. He looks at Julie before adding, “That sentence didn’t go where I wanted it to.”
“Start another one,” Julie says. She gets up to cruising speed before retrieving the royal blue nail and pressing it back into place.
THE GERIATRIC PSYCHIATRIST first talks to Lowell alone. When Julie is brought into the office to round out the appraisal, Lowell stands and meets her eyes, and he doesn’t sit until she does. The doctor’s review with Julie quickly becomes a checklist—paranoia? anxiety? hallucinations?—and Lowell gets tense. “I didn’t know I had these things.”
“He’s just asking,” Julie says.
“I don’t think anything is worse.”
While most people associate Alzheimer’s with memory loss, its effects on reasoning and behaviour are no less defining, and arguably more problematic. The doctor scans his notes from their last visit and asks if their nights are still “disturbed.” Once or twice a week, Julie explains, Lowell has been getting up in the middle of the night to pull all of the bedding onto the floor. He will build a pile, move it back and forth between bed and floor, and then cruise the condo, amassing blankets, towels, sofa throws, any covering he might suitably add to the lot. His compulsiveness is most pronounced in the morning; he’ll pace between rooms, asking basic questions repeatedly, and it can take a few hours for Julie to ground him in the day. Since his nocturnal behaviour has been comparatively short lived and benign, she tries to leave him be. Earlier that week, however, he worried that the condo might catch fire, and set about giving his mountain of linens a cautionary soak in the tub. Julie intervened. Defusing her husband’s puzzlement was preferable to dealing with a flood.
The doctor returns to short answer format. Does Lowell need help toileting? Occasionally. Incontinence? Rare. Exercise? “We get him walking every day,” Julie says. “He’s a trooper.”
“Troop, troop, troop,” Lowell says.
The doctor suggests that there is no need to change Lowell’s drug regimen: no tranquilizers are necessary, and “he’s on the maximum we can do for memory.” Hearing the overall positive assessment, Lowell says, “It’s a miracle!”
“You’re getting lots of help,” the doctor says.
“I’ve got a good psychiatrist.”
Lowell uncrosses his legs and shifts forward in the chair. He has raised his failing game for this visit, and is worn by the exertion. When Julie stands, Lowell rises to his feet with purpose but then seems unsure what will happen next. She goes to him, and they leave the room with arms entwined.
DEMENTIA IS A PROBLEM around which the curtains are often gently drawn, so when I first met Lowell and Julie, over a year ago, I explained that I wanted to get a peek at what they were “struggling with.”
“Living with,” Julie corrected me. “Some days it’s a struggle, other days not.”
That hopeful pragmatism squares nicely with the Alzheimer Society of Canada’s philosophy. In fact, early on in Lowell’s illness, Julie was asked to apply for the organization’s vacant CEO role, but she decided it would be “too much Alzheimer’s.” Increasingly, we will all feel the deluge. The prevalence in Canada of all forms of dementia—Alzheimer’s is the most common, accounting for nearly two-thirds of all cases—is projected to double from half a million this year to 1.1 million by 2038. Meanwhile, Alzheimer’s has rocketed up the list of diseases we fear most; according to recent polls, it is second only to cancer, and it sits first for those fifty-five and up.
Although Lowell is twelve years older than the oldest baby boomer (and seventeen years older than Julie), he knows he personifies the coming wave. A critical difference is that while many people with moderate, or middle-stage, Alzheimer’s have anosognosia, or impaired insight, Lowell remains alert to his plight. Still, he had trouble understanding my designs—Were we going to write a letter together? To whom?—and Julie had to warm him to the idea of being profiled. On one of my initial visits, Lowell, with a twinkle in his eye, seemed to be rehearsing first lines for a full-blown biography: “Lowell Jenkins grew up in Faucett, Missouri. His childhood was not all blue skies… Lowell Jenkins is a natural-born helper… Lowell Jenkins woke up one night and couldn’t figure out where he was…”