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
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…”
In the summer of 2007, Julie and Lowell moved to another condo in the same building. Not only was the new unit a disorienting mirror image of the old, with the kitchen and bedrooms to the left rather than the right, but a full renovation was under way. Carpets were torn up, the kitchen cupboards had been knocked out, and wires hung down. Lowell sat up in bed and surveyed the rubble: “Where am I? What have we done? ”
Around the same time, he was showing uncharacteristic agitation while riding the subway, and when they started planning a trip to Russia he became strangely reticent, though he had visited there many times before on cross-cultural exchanges tied to his teaching. Julie knows now that she rationalized the more subtle changes. “Things happen as you get older,” she said. “You do get older.” But Lowell’s disquiet about the new condo was of a different scale. Such was her struggle to pacify him that in the days following they booked the appropriate tests. “He asked before we knew,” Julie said: “‘Do you think I have it?’ ”
They will knock on our doors,” Dr. Serge Gauthier says about the baby boomers. “All of them, I’m sure.” He is director of the Alzheimer’s Disease Research Unit at the McGill Centre for Studies in Aging, in Verdun, Quebec. The question, he says, is what to tell the individual keen to know his or her risk: “Does everyone who is forgetful need a PET scan? No—but who does? ”
Age is the risk factor that encompasses the other big ones: family history and genetics, gender (twice as many women as men get Alzheimer’s), cardiovascular disease, and diabetes. Evidence is gathering to support what ought to be an intuitive leap between brain health and heart health. Alzheimer’s can cause cerebral bleeding and vice versa, and aerobic activity three times a week has been shown to slow the rate of shrinkage in the hippocampus.
“If you’re preventive about heart attacks in your fifties and strokes in your sixties, you may reduce the risk of dementia in your seventies,” Gauthier says. “That’s a lot of bang for your buck.”
Further motivation is that there is no magic bullet in the offing; not a single new Alzheimer’s drug has been approved in the past nine years. Dr. Judes Poirier, the centre’s former director, says if anything positive has come from the “miserable failure” of recent drug trials, it is the new attention being paid to the idea of “simply and humbly” keeping dementia at bay. Delaying onset by two years would drop the rate of incidence by 33 percent within a generation, and a delay of five years would cut it in half. “If we delay it by ten years, something else will kill you,” Poirier says. “This is the beauty of Alzheimer’s.”
Lowell has an absurdist bent that complicates a reading of the illness. One of his typical jokes: “What’s the difference between a duck? ” And he has a knack for sharp neologisms, at one point referring to Toronto’s mayor as a “bombastard.” While one of his paid caregivers, Olga De Vera, tidies up in the kitchen, he shows me the view he and Julie have down Yonge Street to the financial district and the CN Tower. “There are the mountains,” he says. Lowell taught at Colorado State University in Fort Collins; does he now see a horizon of the Rockies out their floor-to-ceiling window, or is he just making an off-the-cuff metaphor? He considers the frosty December clouds gathering above Lake Ontario. “I guess not,” he says, which doesn’t resolve the question.
He turns his attention back to me. “I’ve got some sentences for our letter,” he says, entering the living room and scanning about. Olga is Filipina, and from her quiet watchfulness I assumed she was a grandmother to many, but it turns out she has no children of her own. With Lowell’s suede-bound journal in hand, she follows behind him, setting the book on the ottoman between the upholstered chairs. She encourages him to have a seat and then says she’ll be going.
“I don’t need any instructions other than ‘good luck,’ ” Lowell says.
“Carol will be here at ten tomorrow,” Olga replies.
“Tomorrow is Carol.”
“I thought today was Friday.”
“Tomorrow,” she says. “Tomorrow you go to the program.”
“I thought tomorrow was Carol.”
“She is,” Olga says. “Friday.”
“Tomorrow is Carol,” he whispers, as though the phrase is a cryptogram.
“Good luck, Mr. Lowell,” Olga says from the door.
Lowell and Julie got to know each other in 1996, at a convention of social work associations in Hong Kong. They managed a long-distance relationship until Lowell retired in 2000, when he moved north from Fort Collins and became the kind of stay-at-home spouse who kept the laundry hamper empty and the refrigerator full. “All my friends wanted to rent him,” says Julie.
By the summer of 2010, she felt uncomfortable leaving him alone all day while she was at the office. Olga, a personal support worker whom they pay privately, was found through a friend of a friend; she takes Lowell out for fresh air and keeps the condo in shape. Once he could no longer dress, shower, or prepare a meal for himself, he qualified for another PSW through the OACCAC. Carol Gilchrist initially came in two mornings per week, but she and Lowell got along so well—she sometimes gets him singing and dancing, despite his daybreak malaise—that Julie paid for a third day. By last November, the OACCAC picked up the cost of the extra day, and this summer added a fourth (Saturdays, when a different PSW comes). As a rule, help is provided according to need; but in practice, overall resources are proving insufficient. Olga, who now comes five days a week, is spelled off by Jessica MacKintosh, who is also privately paid.
Julie says the supplementary care consumes much of her take-home pay and has eaten into her savings. Then there is the investment of time required to manage four caregivers, and a divestment of the couple’s privacy. I ask Lowell if he considers the revolving door of staff “a necessary invasion.” He frowns at the phrase. “They are all strong people,” he says.
Even as he has been forced into an intimacy with strangers, his best friends have at times seemed strange to him. Two summers ago, he and Julie were hosting his oldest pal, Carl Spina, and his wife (Carl served on the committee that hired Lowell to Colorado State from the University of Kansas in 1974). One morning, Julie suggested a trip to the nearby farmers’ market. She struggled to reason with Lowell, whose anxiety was running amok. “You say you love me, but it’s just for the others to see,” he told her. When Carl—with whom Lowell ran a psychotherapy practice for several years—tried to intervene, Lowell snapped, “You’re not my friend! You’re not the Carl I believe in!” Julie and Carl’s wife went out for a walk, and Lowell retreated to the bedroom. When Carl looked in on him, Lowell was staring at the ceiling with the covers pulled up to his neck. “I get like that sometimes,” he said to his friend. “I don’t know what I’m doing.”
These rare, brief episodes only emphasize the less sensational, but more complete, metamorphosis under way. Lowell has become quiet in Olga’s absence. He is staring past me, the cold sky reflected in his glasses. Over his shoulder, on the shelf of an antique cabinet, sits a caricature of Lowell sculpted by one of his graduate students. The waxen doll has a generous salt and pepper ponytail and wears sandals, a breezy cotton shirt, and a knowing grin; it bears an uncanny likeness to the Lowell of a decade or two ago—the man who, Carl tells me, was regularly sought out for his informal counsel, a kind of patio mystic. “He had no agenda except to be present,” says Carl.
With so much of Lowell’s focus and vigour going or gone, it is an arresting irony that an inert doll has come to embody his more animated self. Carl acknowledges that the regular phone calls that have buoyed their friendship since Lowell immigrated have, over the past year, become onerous. “I know he’s there, but the conversation will just stop. It’s hard to stay on with him.”
Lowell and I have drifted into just such a no man’s land; neither of us has spoken in a few minutes, and I can’t recall what constituted the last exchange. I’m trying to avoid prompting him. As I begin to wonder if, or when, our wordlessness became actual disconnection, Lowell catches me off guard. “What are you thinking about? ” he asks.
“That was going to be my question.”
Rather than opening his notebook, Lowell places a hand over it, palm down and slightly raised. “You have a thought here, and then it moves, and then it’s altogether gone…” His hand hovers through a long pause, as though the next remark is being summoned arduously from a Ouija board. “Is it gone? It’s all lying right there in my heart and in my head.”
Lowell, Jessica, and I sit in the living room with a cooking show muted on the flat screen. A collage of antique fob watches decorates the opposite wall. It’s June now, and Lowell seems a little too sunk into his chair, a little more shrunken than when I last saw him, at the psychiatrist’s. He once said the illness and his personality are “intractably interconnected.” I ask him now if he might elaborate; he can’t, though he seems to brood over the chewy words attributed to him. With the no-nonsense method that defines her trade—you can’t be passive when cleaning a man’s face, or helping him button his pants—Jessica chimes in, “He’s told me how it feels. He will say that it hurts him to be deteriorating.” Since we have begun to talk about him rather than with him, I’m a little embarrassed, but Lowell remains unruffled.
Jessica asks him, “What makes you frustrated about this? ”
“Huh? ” he says, sitting up a little.
“What are the types of things that frustrate you? ”
Lowell points to an ear. “I still can’t…”
“What bothers you? ”
“Getting asked the same question over and over again.”
Jessica laughs loudly and heads for the kitchen. Within her earshot, Lowell says, “I think I’m scared. But I don’t go around talking about being scared.”
“Are you worried about Julie? ” I ask.
Lowell stares into the middle distance. I can’t tell if he is struggling to put the matter together, or if I’ve raised a notion that is too baldly heart rending. He starts picking at his scalp. Alerted by the pause, Jessica looks in from the kitchen. “Stop scratching,” she says. Lowell blinks but continues to pick. “Lowell! Stop scratching.”
“Worried,” he finally says. “Yes.”
Julie and I meet two weeks later at a Yorkville coffee bar. Her contract with the OACCAC is about to finish, and she will not immediately be looking for work. She is a compact woman with a blond bob that frames fierce blue eyes, and I can’t imagine she suffers time wasting in the boardroom. If she felt her future with Lowell was bearing down uncontrollably, she would say so. “I can live with a certain amount of ambiguity,” she says. “You can only plan for so much.”
I ask if Lowell’s dementia has outpaced her ability to come to terms with it: “Five years ago, I wouldn’t have believed all the change that was in store, but you make adjustments as you go along.” She keeps one eye on the queue of busybodies over my shoulder, absorbed in their smart phones. “The illness is not linear,” she says. “It’s back and forth. There are lots of times when life is compromised only a little.”
Her equanimity sometimes seems impossibly resolute. “We never spent any energy pretending,” she told me in an earlier conversation. In the winter, when they added his name to the three-year waiting list at their preferred long-term care home (the Isabel and Arthur Meighen Manor, where a third of the beds are dedicated to dementia patients), she listed for me the triggers that would determine when she could no longer cope: when Lowell has “real trouble” sleeping, when he can’t use the toilet without help, and when he can’t be left alone at all. Several months later, her list has not changed; nor has her hope that the three factors will coincide with a sputtering of Lowell’s self-awareness. “The meaning of being at home is only lost if they don’t know where they are,” she says, projecting the professional persona she admits has served her well during Lowell’s illness.
As a backup plan, she put Lowell on the list for a second place, knowing there was a good chance he would be offered a room there sometime this fall. The problem is, if the offer comes and they turn it down, Lowell’s name will be removed from all lists for several months; she would then have to reapply to join the back of the line at Meighen Manor. As a result, she has been debating whether to take his name off the list for the second home.
She doesn’t know if the call will come when she wants it to, because she can’t know when she will want to get the call. Her grip on the inevitable—Lowell taking a bed, at best, several blocks away from home—does not simplify the question: when should she end what they have together? “You have to be thinking of your life after,” Julie says. “You—” The café’s juicer makes a high-pitched gnashing that could drown out a wood chipper. She coolly waits, then resets her thought. “If I put it off for too long, I’ll be a mess,” she says. “I have to pay attention to my grief.”
Wherever Lowell’s reverie about Julie takes him, he is back in a flash. He studies me, his trusty pencil tucked behind one ear, angled cannon-like over his glasses. “An idea I’ve used in lectures is the idea… when the attention to human need manifests itself in the structure… wait now…”
Jessica sets a plate of crackers and cheese on the ottoman, and beside it a tissue box in the form of an Easter Island moai (the tissues emerge from its nose). Lowell sits up and leans toward the food. “Having a structure where everyone takes care of everyone else,” he says.
For the purposes of glimpsing Lowell in his prime, a former colleague of his sent Julie a video, circa mid-’80s, of him and Lowell (with two graduate students sitting in) discussing “the nature of helping.” Lowell wears a tweed blazer over a pink golf shirt, his hair thick and wavy. He attacks the topic with vim. “Helping takes courage, it takes openness, it takes risk taking. Helping is not a thing or an entity; helping is a process.” His eyes dart about the small gathering inclusively, he peppers his answers with references, and he circles back simply from digression. He’s in his element, his intelligence on autopilot.
When he has finished his snack, he pushes into the chair’s plush arms and works himself upright. While half-standing, he gestures to his willowy legs: “It was never like this before.”
“What’s wrong? ” Jessica asks.
“It’s like a loss of power.”
“Maybe we should go for another walk.”
“Well,” he says. “No.”
Shaking her head at him, she collects the empty plate. He straightens his legs and watches her go. “Camaraderie,” he says. “Now, there’s a word.”
There is still snow on the ground, and Lowell is out in a Siberian silver fox fur hat of such size and charisma it seems to wear him. He passes through the community health centre’s sliding doors and heads for the open, mostly full elevator with casual chutzpah. “Here comes the hat!” someone inside says. “Where’s it from? ”
“Moscow!” Lowell says. “I went there myself to get it.”
He is greeting everyone individually, and the hat’s earflaps are down, so he doesn’t realize two more people are trying to squeeze on: one of the staff from the specialized seniors’ program he attends here, and a white-haired woman who smiles cautiously. “This woman needs to pee,” says the worker, who then enters a security code into the elevator’s keypad. On the second floor, the woman in need gets out and steps aside, but once the cab is empty and the door is closing toward her, she seizes the elevator frame with both hands. Her smile holds steady even as she grips more tightly, and two additional staff members rush to help get her out of harm’s way. She is then calmly led off to the bathroom.
Among the eight other attendees in the program, the need for assistance varies widely, their impairments ranging from physical to cognitive. In an adjacent common room, everyone takes a seat, or is seated, around a long table on which daily newspapers are spread. Coffee and snacks are served, and a bubbly facilitator arrives to lead the reintroductions. Most participants are regulars like Lowell, who counts these thrice-weekly excursions as a highlight of his calendar. There is a man with sternly combed oily hair who is new to the group, and he is asked to say something about himself. “I was a teacher.”
“What did you teach? ”
“I was a teacher.”
The facilitator welcomes him, and says that in honour of the Chinese New Year she thought they might discuss the Chinese zodiac, match everyone’s birth year to an animal. When she gets to Lowell, he tells her he was born in 1934. “I’m a Leo,” he adds. “Not sure how that fits.”
She consults her chart. “You’re the dog,” she says.
Lowell’s eyes widen, and he starts barking. Giggles domino around the table. “Loyalty, compatibility, and kindness,” the facilitator reads.
The woman who had been escorted to the bathroom is ushered to a place directly across from Lowell, and he greets her by name. She studies him for several seconds. “I know you,” she says.
Lowell nods. “I’m just checking in,” he says.
After the warm-up chat, the group takes a break before some gentle calisthenics. Lowell and I stand off to the side as the facilitator arranges chairs in a circle and sets up a portable CD player. “Is our basket filling up? ” Lowell asks me in a discreet voice. While some participants have gone to the washrooms down the hall, one woman immediately selects a chair. She sits upright with one hand cupping the other and her head cocked dreamily, like a stoic on a bench waiting for a cancelled bus. “You could do a story on each one,” Lowell says. “With each one, you could hardly figure out what’s going on.”
Ten minutes later, he is tapping both feet madly to the Kinks’ “You Really Got Me.” You got me so I can’t sleep at night. The man to his right is conducting grandly with both hands; now and then, he looks at Lowell’s feet as though they are an instrument beyond his rule. The session is rounded out with some mouth stretching and vocalization. Lowell gets progressively louder with every repetition of the vowel sequence. During the last round of aeiou, he holds the U until he’s out of breath. When the snickering falls away, the man next to Lowell sings, “And sometimes whyyyyy.”
Shunt ahead to that gloomy April day with Lowell in the rocking chair. The pencil he was tapping has dropped into his lap, and he watches me take a note about it. He has not said anything for so long he needs to clear his throat. “How do I talk? ” he asks. I never had the impression that he distrusted his fragmentary speech; perhaps he regrets being defined by it: “I worry I made a promise I can’t keep.” I do my best to reassure him that he has helped me understand what it’s like when your mind betrays you, and our attention returns to the cross-section of the brain. The web of parts is austere, a primitive paint-by-numbers that would keep a child distracted briefly. I wait, as Lowell waits, for the understated summary line that will absolve his failure to realize a paragraph. Eventually, he says, “It’s the things it takes away.”
This appeared in the November 2012 issue.