Robert McCrum, once the books editor for the Observer, is a literary man, an official senior citizen since his sixty-fifth birthday in July, and the survivor of a major stroke almost a quarter century ago, which he wrote about in My Year Off. No surprise, then, that he is more inclined to think of death than his contemporaries, or that he took the title of his recent book on the coming passing of the largest generational cohort in Western history, Every Third Thought, from Shakespeare’s philosopher-mage Prospero: “And thence retire me to my Milan, where /Every third thought shall be my grave.”
What may be surprising to readers, as it was to the author, is what McCrum learned wandering about Britain talking to his contemporaries about their thoughts on the endgame. His book, McCrum declared, ended up with more pages devoted to mental than physical worries, because his generation was the first in history more fearful of what it sees as the living death of dementia than it is of death itself. The rise of personal autonomy to the highest of Western values is usually cited as the prime driver in support for medically assisted dying, but there can be no doubt the negative side of that adherence—the raw fear and revulsion at the very concept of losing that autonomy, of the obliteration of self-awareness—is closer to the bone.
Baby boomers have reason for that fear. The numbers, as they tend to, tell a pitiless tale. The worst news about dementia, especially Alzheimer’s—which accounts for three-quarters of the cases—is that we haven’t seen the worst yet. Over the coming decade the elderly percentage of the developed world’s population will balloon. Over-65s now comprise seventeen percent of Canada; by 2030, they will be a quarter of the population. More and more of us, more physically healthy than ever before, will live to experience dementia, and there is next to nothing on the medical horizon that might ameliorate its effects. There are more than ten million Alzheimer’s patients in North America and Europe today, a number that will double over the next twelve years. The patients will increasingly be baby boomers, and not their parents. The boomers began turning sixty-five in 2011. Since then, a thousand Canadians have hit that milestone every day, a rate that will continue until—of course—2030, a year that’s starting to sound like a good bet for Armageddon.
The heaviest weight will fall, as always, on women, and in a particularly vicious way. The world’s primary caregivers also make up two-thirds of Alzheimer’s sufferers, partly—but not entirely, suspect researchers, who point to possibilities ranging from the long-term effects of pregnancy to estrogen levels—because they live longer than men and are more likely to reach the riskiest age for the disease. The financial burden is already enormous—$55 billion annually in Canada and the U.S., just from income forgone by family members (read women) taking time off work to care for parents—and the stress toll even greater. Care for elderly relatives is exhausting and, frequently, depressing, according to decades of studies, and care for the cognitively impaired grindingly so. The care they are providing their own parents means boomers can see the dementia wave coming, however much they avert their faces from it.
All that is true, writes Mike Barnes in Be With: Letters to a Caregiver, and profoundly wrong at the same time. Barnes, sixty-three and on the cusp of seniorhood himself, is a fine writer—he has had poetry collections shortlisted for major awards, short fiction included in Best Canadian Stories and The Journey Prize Anthology, a superb noir novel, The Adjustment League—who has had no easy life. Profoundly bipolar, prone since his twenties to cycle in and out of deep depressions and episodes of psychosis, Barnes knows the struggle to maintain a disintegrating self as well as any Alzheimer’s patient. Or, to be more exact, he adds in Be With, the struggle to craft a new self from the shards of the old.
He’s also a fine son. Now ninety-two, Barnes’s mother, Mary, is in the final stages of Alzheimer’s, the days when the disease, “having bored down through memory, language, thinking and feeling, is now at work in the basement,” taking apart the machinery that allows life itself. Barnes has been Mary’s primary caregiver through it all, for the seven years since her diagnosis, and the years of erratic, frightening, unnamed symptoms that preceded it. His four short letters (the entire book is only 156 pages) are addressed to those who are now in the position he was in seven years ago. Suffused with an awareness of what new caregivers are going through, they stand out for addressing not only dementia’s assault on the sufferer’s self, but its assault on the primary caregiver’s self. In their simplicity and even-handed tone, the letters achieve their author’s difficult aim: they present as a literary Third Man, a friendly, authoritative voice in the dark that will lead its at-the-end-of-their-tether listeners through to the endgame. (There is, naturally, no happy ending.)
Yes, Barnes calmly sets out, every awful thing you fear will come to pass. Alzheimer’s will tear you apart, whether you have it or you are deeply involved in the care of someone who does. You are dazed, sleepless, and confused right now, partly because it is new to you, and partly because it is new to the sufferer. Many hells, he writes, are at their worst near their mouths, when flashes of outside light can still be seen, when “memories of the former life attack most sharply. When large parts of the self still linger on a visible shore, bereft and calling helplessly for your return.”
Mary took her diagnosis with the stoicism of the Depression-era Prairie girl she was, expressing some gratitude for finally knowing what she was up against. But years later Barnes found a journal Mary kept at that time; the day of the diagnosis has a two-word entry: Dear God. The early months were the time of Barnes’s eighteen-hour caregiving days, including the fear-stricken 3 a.m. calls, which lasted until Mary no longer knew how to use the telephone: Where am I? What do I do? What is happening to me?
Barnes has moved Mary four times in the seven years since her diagnosis, each move to a more secure location roughly mapping over her inexorable decline: from mild to moderate cognitive impairment, moderate to severe, severe to very severe, very severe to late stages, and the approaching latter days. He leads the reader through those stages, the anxiety of the loved one, the understandable guiding principles of institutions—order, safety, and profit—and the close attention caregivers have to pay to the process. He knows you’ll lose friends through inattention (and inability to talk about anything else), the favourite pastimes that will fade away. He knows the mistakes you’ll make—in retrospect, Barnes believed he let Mary’s personal hygiene slip through the cracks for a while—and he urges you to beat yourself up over them, because that will spur you to do better. Oh, and spend money, all you have if necessary—that’s what it’s for, isn’t it, to care for those you love?
His touches matter-of-factly—although his anger is palpable—on what is even less openly discussed: the sibling question. Boomers are by definition rich in brothers and sisters, whom they will need themselves in the future, considering how short they are in offspring. Who helps and who doesn’t with mom—it’s almost always mom—can turn brutally divisive, and everyone who writes about it tries to take the high road. In her family memoir All Things Consoled, which shares the same September 18 publication date as Be With, about the last years of her parents (who did not suffer from Alzheimer’s), Elizabeth Hay, sixty-six, walks lightly around a now-repaired relationship with one brother. The book takes material from fiction she wrote in her thirties, work that focused heavily on her experiences growing up, but which she did not want to publish while her parents were alive, “especially,” she says, “about my father’s temper.” She was a prime target of that—more than her siblings—but she still stepped forward as the primary caregiver in the last crisis years of her parents’ lives.
The siblings essentially cooperated in delivering that care, but a comment from a friend of Hay’s reveals the fissures that can arise. The friend had received a reproachful letter from a sister who was looking after their mother in her old age. Her friend’s response? “Fuck off. You took it on. If you didn’t want to do it, why did you take it on?” She tells Hay, “We were in Vancouver. There was nothing we could do. And what it all boiled down to was that she felt unappreciated.” “Feeling unappreciated,” runs Hay’s plaintive reply, “isn’t nothing.” As the Vancouver comment makes clear, geography plays a large role, although, to those nearer the scene, it often sounds like a cop-out. And geography can be shorthand for jurisdiction in a decentralized federation: living in Ottawa, Hay was not much nearer to her parents in London, Ont., than was her brother in Montreal (although she was much closer than the siblings in Halifax and Mexico City), but when her parents relocated, it was near her; it was very helpful that they already had Ontario health cards.
Barnes’s four siblings are close enough to their mother in Toronto, but still mostly “absent,” as are most dementia patients’ family members, in his experience. Often, he writes, on visits with his mother in a crowded ward, he is the only visitor there. He mentions one sister by name, the one who helps with Mary’s care, but the other three siblings go unnamed. Barnes is not openly judgmental, but clearly believes they are failing in what would be both burden and boon to them, in the duty that Barnes’s title captures: “I spent a lot of time with her, all I believed I could spare. I should have spent more.”
Barnes knows more than the pain and sorrow, the mistakes and regrets, something else that forms the core of his book. He knows that caregivers, caught up as they are in the overwhelming practicalities of looking after patients, can easily miss that the “object” of their care is not only still alive in the midst of living death, but still living: “All people with dementia, and some of them strikingly, show depths of sensitive awareness, resilience rising to heroism, and a capacity for joyful relatedness that is almost totally missing from public discussions of their condition.” Sometimes, in fleeting moments, Barnes adds, Mary’s life has even been “enhanced” by her disease.
For many people that last comment will be a bridge too far, even offensive, although Barnes is adamant it is true. But on his main assertion he is simply, arrestingly, correct. Dementia patients invest enormous creativity into adjusting to their new realities. If, as their recent past fades away, they want to go home, even if the home they can remember is not only thousands of kilometres but dozens of years away—Mary once wanted desperately to return to a long-gone Saskatchewan—they will work hard at figuring a way there. They will declare they have received eviction notices and have to go somewhere, that they have had a call from a long-deceased elderly relative of their own—that they have to go home to provide caregiving themselves. Mary has shed defences, habits, her lifelong mental hide. Hidden interiors emerge from all Alzheimer’s patients. Sometimes the results are ugly—we hide things for a reason—but at other times not at all. Among the many things Mary sheds like an old skin, Barnes writes, are the alcoholism of her fifties and the casual racism that had always marked her speech. She began to respond to people entirely by their attitude to her, warmed by kind attention, cooled by polite distance. Once physically standoffish, she has gained an appreciation of touch, the first and last of human senses.
Barnes has been moved and amazed by his mother’s courage and effort, how she has learned to be a new person. She has had dementia for perhaps twelve years, a significant chunk of her life, as long as her K-12 school years, he points out, just as he has spent a solid portion of his life—almost as long as his childhood with her—seeing her through it. What really matters, he concludes, is the hardest thing, being there with her. “For every thousand pages describing how living is shattered by this dread disease, there should be at least one page observing how living goes on within it.” Be With has 156 pages of them.