What Lies Ahead

When I was about seven or eight, I went to the bank with my mother. She needed to open an account, which — as bizarre as it may now seem — wasn’t then the easiest thing to do as a newly divorced woman.

I can still picture the clerk at the shopping centre branch: small, bearded, haughty. Several times he emphasized her married name —“Mrs. Dunsky”— and asked whether “Mr. Dunsky” was aware of this new account.

Finally, my mother had had enough and snapped, “It’s Dr. Dunsky.” (Eventually she dropped her married name entirely.) My mother never lorded her academic achievement over anyone. She never hung her doctorate on the wall of her office — a rite of passage for professionals of her vintage. She never even framed it; I finally did that for her years later.

To contemporary ears, the story may not sound like much. But in the mid-1970s, when the title “Ms.” was still controversial, that episode became a kind of encapsulation to me for what it represented about my mother: educated, independent, indignant. It also made me feel good that she had put that officious little twerp in his place.

Now, fifty-odd years later, that same proud, accomplished woman has Alzheimer’s. Actually, the official diagnosis is dementia, but since Alzheimer’s accounts for most dementia cases, we mostly use that word.

It’s a frightening term for my mother — an unambiguous one. Ever since my paternal grandmother began her own decline with dementia years ago, I’ve known that it’s one of the things my mother has dreaded most. “She’d be better off dead,” my mother said to me once after I’d visited my grandmother, when she was in the late stages of the disease. I had never heard anyone say such a thing, but I understood exactly what she meant, which was not at all mean-spirited: quality of life matters. (Admittedly, not everyone agrees. My father, who spent much of his last year of life in hospital with failing organs, believed in living, no matter what. “How many times do I have to tell you?” he berated me once that year. “Quality of life is a goyishe concept!”)

By my twenties, my mother had made it clear, on several occasions, that she didn’t want to end up like my grandmother. She talked to me about the Hemlock Society, a right-to-die group in the United States, and asked that I help her figure out how to use services like theirs should the need arise. Long before Canada’s medical assistance in dying law was passed in June 2016, my mother was a proponent of the right to choose to end one’s life; I know she spoke to at least one doctor friend to explore her options in the event she was losing her mind and no longer wished to live.

At this point, as I understand it, she’s at an intermediate stage in the course of the disease. She still lives on her own, remains active, sees friends, takes classes, attends concerts, and generally lives her life as best she can. She is not unusually depressed, angry, or paranoid — emotions that may accompany the disease. Being a practical person, once the reality of her situation sank in, she pretty much resumed her normal behaviours and outlook on life — which tends toward optimism — though she waited about a year before telling her friends. She still has her corny sense of humour and loves to laugh.

She forgets things, however, and needs more help with everyday matters that most of us take for granted, like properly caring for a skin cut or setting an alarm. She’s often confused about dates and time. Conversations are more restricted and repetitive, and they tend to reach back to what she knows instead of looking forward to what she may once have been interested in. New instructions that have two or more steps are nearly impossible for her to follow without me explaining and showing her over and over. The time is approaching when she’ll have to move to a residence. That she doesn’t forget: it’s a prospect she’s not too pleased about. She is also quick to point out when I get things wrong or blank out on a detail. “You see?” she’ll say. “It’s not just me who forgets.” It’s not that she relishes these moments as small victories; rather, she doesn’t want to feel as though she’s changed too much.

But something has changed. The fact is there’s now a race between a wasting neurological disorder and death: Will my mother lose her mind before she dies? And so, even though she is living “as independently as possible, as safely as possible, for as long as possible” (the wise advice of one of her doctors, though easier said than done), she is increasingly judging her life through this lens.

My mother may be eligible for “Track 2” MAID, available to those “whose natural death is not reasonably foreseeable,” and she has raised the possibility with me dozens of times since her diagnosis. Unsurprisingly, these conversations always end up at the same place: she wants to avail herself of it “when the time comes.” What was true decades ago is still true today.

I find myself wondering what the MAID specialists will make of her memory lapses. Will they be disqualifying? Are these doctors experienced enough to know the difference between forgetting a name or a date and remembering one’s principles? Let’s say she’s approved for MAID, keeps that approval in her back pocket, and goes on living until she no longer takes pleasure in life. If that moment comes only when her Alzheimer’s has significantly progressed, will she then still be deemed competent enough to consent to her own death?

That’s one of the tricky consequences of MAID: one has to regularly be asking, “Am I ready?” I’m certainly not going to be standing over her, tapping my watch and saying, “It may soon be too late.” On the other hand, she’s relying on me to make sure she doesn’t suffer, and she has made her intentions crystal clear. There’s no easy answer to that.

Taking care of my mother occupies a good portion of my schedule: it’s like having a busy part-time job. But I am happy to do it, however trite that may sound. Yes, there are sometimes frustrations in the moment, but, on the whole, being needed by someone you love is rewarding. (When I changed careers a decade ago, I mentioned to an acquaintance that I was considering social work. He counselled against it and said, “Taking care of your mother will be your social work.”) For her part, my mother is grateful for everything I do and often lets me know.

Mostly we agree about her needs, which is helpful. Partly this is because, although ninety this month, she is in remarkably good physical health. This past spring, my brothers, our spouses, and I took her to Paris, a city she loves, and she kept pace with us, walking over 20,000 steps a day, according to the app — literally every step of the way, including the 200 stairs in the pretty Abbesses Métro station in Montmartre.

Less agreeable is her reluctance to ask for help. Last year, after lengthy negotiations, my mother finally accepted some part-time assistance. She was adamant that she didn’t need it but acquiesced when I finally said that I needed a break occasionally — that I’d like to go on vacation with my wife, which would be difficult if my mother always relied upon me. (My brothers don’t live in the same city as my mother and me.) Now I get calls from Mae, her personal support worker, telling me that my mother has sent her home after an hour or two. “She won’t let me do anything.”

Harder still are the disagreements that never get resolved. As much as I try to treat my mother with dignity and to respect her autonomy, my perception of her abilities and her perception of them are increasingly at odds. I can draw on my own experiences as a parent of young kids to navigate those gulfs — back when I reserved the right to have the last word during disagreements — but I don’t particularly want to parent my mother. Besides, if I’m not around all the time, I can’t.

A small illustration: As a child of the Great Depression, and being of a certain sensibility, my mother will not take taxis. Taxis are an extravagance. People like her walk and take transit. So, even though she’s old, has had several falls (one symptom of her Alzheimer’s is impaired visuospatial function), and can afford it, she will drag her cart along with her to do her shopping, getting on the bus or the streetcar or the subway, rain or shine.

Part of me admires this tenacity: she is living her life on her own terms, which she’s always done. But I also shake my head. Some of her falls have required trips to the emergency department though she luckily hasn’t broken a bone — yet. “If you fall again,” I tell her, “you could break something that matters. Then the things you still enjoy will be much harder.” She says she understands and that she’s careful and that she’ll take a taxi if she needs to. But she doesn’t, and she won’t.

As bewildering to me as these choices are, she now seems to rely more on her habits of mind, formed over a lifetime, and less on a consideration of possible consequences. My choices are still temporal: I see my life unfolding in time, tied to a larger story, like a movie. Maybe her reality is no longer connected in that way. Perhaps each choice she makes is like a photograph, an expression of a particular time and place — a moment that reveals something but is strangely devoid of context. Maybe her Alzheimer’s has allowed her to figure out the art of being in the present, and she’s become a master of mindfulness. In instances like these, it’s hard to know where her personality ends and the disease begins.

Like many people, my mother has always enjoyed going through photographs. Lately she’s been going through decades’ worth of them. Is she doing this more now because of her Alzheimer’s? I don’t know.

There are pictures of her life in Montreal: her children, grandchildren, colleagues, and friends. Lots and lots of friends. As an only child, she’s always considered her friends to be extended family. But it’s the pictures from her earlier, pre-Canadian life that stand out to me the most. Those include scenes of her youth in Egypt, in the era immortalized by Lawrence Durrell in The Alexandria Quartet. Photos of my grandmother in her nurse’s uniform and of my mother and her friends from “les Éclaireuses”— Girl Scouts. Behind her in one picture is the Aswan Low Dam, taken several years before construction began on the larger High Dam — a priority of the Free Officers who overthrew Farouk I in 1952. There’s another with her best friend, Aviva, who died in her teens, and with Aviva’s brother, the namesake of my oldest brother. There are pictures of my great-grandparents, after whom my other brother is named. They had fled the poverty, antisemitism, and pogroms of the czarist Pale of Settlement, the region of the Russian Empire beyond which Jews were forbidden to live. Although citizenship in Egypt wasn’t in the cards — ironically, after the Russian Revolution, my mother’s family were registered as “White Russians”— they were safe and settled.

Then there’s a series of photographs from her university years at the Sorbonne in the 1950s, where Jean Piaget taught her psychology and Jean-Paul Sartre gave her a book of his with a personal inscription. There she is with her dapper boyfriend Gilbert, who used to pick her up on his Vespa to go for a midnight soupe à l’oignon at Les Halles, long before the market was razed. This was postwar Paris, which was only then emerging from the continental devastation of the Second World War, but also the Paris of Jacques Brel, Yves Montand, and Édith Piaf — and of eastern and central European émigrés from the early, unsettled years of the Cold War.

And then Israel, the first country to offer her citizenship. My mother was part of the large Jewish exodus from Arab countries that took place in the middle of last century. Forced to leave Egypt with no assets (Jews had “donated” their property to the state, no matter how little), she and her mother arrived in Haifa as refugees in the late 1950s and lived together in a tent while they learned Hebrew and waited for the government to find them a place to live. There’s a picture of them both in their first few weeks in the country and another, taken later, of her dressed for her first job in psychology, in Tel Aviv, where she eventually met my father.

Growing up in a pre-digital era — actually, a pre-automatic age — and never being particularly good with technology, my mother generally relied on others to take pictures. She’d ask for copies and always say, “Make sure you write who’s in the picture on the back, and where and when it was taken.”

I can remember her handling a good camera only once: when she went to Greece after the fall of the junta, as the country transitioned to democracy. For that trip, I taught her how to use my Nikon — ISO, f‑stop, shutter speed — and she took some pretty nice pictures. In Athens, she tried to find a beloved mentor she knew from her teens: a middle-aged expat from Alexandria nicknamed Monsieur Nix, who had introduced her to art, music, and literature. Who has these kinds of memories anymore?

I grew up with all of her stories. At some point soon, they will disappear, just like the thickly accented English of the men and women from “the old country” that featured in the soundtrack of my youth. These photographs remind me that history isn’t the distant, dusty past but actual events that happened to real people in specific times and places not so very long ago.

Last winter, my sons got my mother a digital frame and loaded it with hundreds of photographs that play on rotation. Initially she was thrilled, but now the screen stays off unless I turn it on. She forgets how to make it work and doesn’t like digital snapshots anyway; she finds them too insubstantial. She prefers pictures that she can thumb through, those that are tactile and permanent.

The digital world is a nightmare for those with Alzheimer’s. Things that I may find maddening online — remembering passwords, blocking pop‑up ads — are impossible for my mother. Not difficult, not challenging, but impossible. She simply cannot do those things — or pay her rent on her building’s “improved” website, book a doctor’s appointment on the clinic’s “health portal,” or adjust the number of times her phone rings before switching to voicemail. So I take care of these administrative minutiae. But my intervention further severs my mother’s relationship with the world, which seems especially foolish given that social interactions — even talking on the phone — are helpful for people in cognitive decline. If elderly people are often ignored by the twenty- and thirty-year-old nerds who are designing our future, those with dementia aren’t even considered.

Unfortunately, that’s sometimes also true in the physical world, including in situations where I wouldn’t have expected it. Some of the doctors my mother sees ignore her and talk to me instead. When they do this, I keep my eyes focused on my mother, hoping they get the hint. Sometimes I have to tell them, or remind them, that she’s the patient, not me. “Talk to her,” I’ll say. “Don’t worry. I’m getting it all, and I’ll ask questions if I have to.” The funny thing is that my mother, who worked in health care her whole life, had told me this would happen once I started going to doctor’s visits with her.

I understand that people are busy and that my mother will repeat the same question again and again — sometimes during the same visit. But come on! This is a human being, not an amalgam of cells and symptoms. I don’t expect others to have as comprehensive a view of my mother as I do, but I am sometimes stunned by her invisibility, especially to those who should know better.

Thankfully, she will also tell me about how nice people are to her in everyday interactions, rising to give her a seat on the subway, which she seldom accepts (“It’s good for my balance to stand”), or offering to help with heavy bags as she walks home with her groceries. The world sees her as a little old lady now, which is sometimes nice, sometimes not.

As I said, my mother has retained her sense of humour, and she continues to make me laugh, though unintentionally on occasion.

A little while ago, at her urging, we finally sat down with her family doctor to discuss MAID, to make sure that her wishes were known and for her to understand the process. However, when her doctor asked her why she was thinking about this, my mother got MAID and Mae, her support worker, mixed up, as well as the reasons for wanting one and hiring the other. “I don’t want MAID,” my mother said. “My son insists because he wants to go on vacation.” Fortunately, her doctor didn’t call the police to report me, and after I explained the confusion to my mother, she laughed and corrected herself.

And so here we are, managing as best we can. There’s no cure for Alzheimer’s, but there’s also no denying that my mother has had a good, rich, and rewarding life. And isn’t that the point?

Sometimes I can’t remember a particular word for the crossword puzzle I’m solving. It’s on the tip of my tongue, but it just won’t come. In those exasperating moments, I slow down, think about all the things my mother can’t remember, and reflect on how well she’s handling the curveball that’s been thrown her way.