Robin Giles felt like she was missing a joke. It was Christmas morning in 2012, and she and her husband, Joël, were going through familiar traditions in their apartment in London, Ont. Later they’d go out to visit friends and family, but for now, it was just the two of them and their cats.
They opened their stockings first, and Robin was becoming more puzzled with each object she pulled out: They were utterly random. Jo had always been a thoughtful gift-giver. One year for Christmas, he gave Robin a beautiful set of bound Paddington Bear books, a nod to her childhood favourite. He’d often come home from work with an album for her, or a treasure he found at a used bookstore. Today, though, her stocking was filled with CDs she already owned, and a used container of hand cream, as though Jo had bought a store tester. She kept thinking there was a punchline or a theme she wasn’t seeing.
She and Jo put on coffee and made cinnamon buns, but when they started opening presents, Robin’s bewilderment deepened. Jo’s gifts to her were a pile of used DVDs—titles that held no sentimental value. One was Tin Cup. “I remember thinking, ‘What the f--k? I don’t like golf or Kevin Costner,” Robin says. As she recalls this, she and Jo laugh at the memory, but, in the moment, it was deeply unsettling. “I don’t get it,” she said to Jo. “Am I missing something?” He was at a loss, unable to explain.
“I remember being really upset that Christmas—not because of the material stuff, but because it just felt weird,” Robin says. “It felt really weird.”
Something was wrong. This wasn’t Jo.
That Christmas, Joël Aubin was 36 years old and already battling hard to work around an erosion process that was hard-wired into every cell of his body. He had dominantly inherited Alzheimer’s disease, the result of a genetic mutation that snakes through family trees. The disease itself is rare, and Jo is a nearly unheard-of aberration because of his age. He wouldn’t know he had the disease for another 18 months—but he’d seen it all before: His mother was 47 when she died of the same illness. Jo’s teenage world had been ripped from its frame then, but he had grown up with no idea that he had a 50/50 chance of inheriting the same fate. Alzheimer’s disease would fray his marriage before fundamentally changing it, shrink Jo’s world to the size of his neighbourhood and forge his friends and family into a tight support system. And it would lead Jo to resolve to avoid a long goodbye like his mother’s, and to choose when his story would end.
The dominantly inherited form of the disease is said to account for fewer than one per cent of Alzheimer’s cases—Jo’s specialist pegs it at much rarer than even that—and it’s caused by a mutation in one of three genes. While the more common type of Alzheimer’s carries a genetic risk component that means certain people are more likely to develop the disease, this genetic mutation is different: For an unlucky few like Jo, it’s a terrible guarantee. These people overproduce a protein called beta-amyloid, which accumulates in their brains as “plaques,” while another protein called tau twists itself into “tangles” inside the nerve cells. Together, they strangle neurons and eventually consume memory and ability as the brain withers.
People with these genetic mutations usually show symptoms around the same age as their parents. A 2012 study published in the New England Journal of Medicine traced the insidious groundwork of the disease through “biomarkers” detectable in the body long before symptoms surfaced. Twenty-five years before Jo would have noticed any major cognitive problems, the levels of amyloid in his cerebrospinal fluid would have begun to decline, as the protein began to accumulate in his brain. Jo would have been about 10 years old.
Jo and Robin grew up in Kapuskasing, a remote northern Ontario town of about 8,200 people. In Grade 9, Jo met Shawn Veilleux and the two clicked instantly, becoming lifelong friends. Jo marched to his own beat, never worrying what other people thought. One weekend, a group went camping, packing little more than wieners to eat and a ridiculous quantity of beer. Jo showed up with a giant cooler stuffed with bacon, eggs, steaks, sausages—and one six-pack. “We all laughed at him. All the way to the provincial park, we laughed,” Shawn says. “It was just that Jo attitude: ‘Don’t worry about it. I know what I’m doing.’ ” By Saturday afternoon, everyone was so sick of hot dogs, they were begging to trade their beers for Jo’s food. “This guy walked out of the park probably with three cases of beer in his hands,” Shawn says. “He got us all. Everybody.” (Shawn and his wife, Chazza Currie, are good friends of mine, which is how I came to know about Robin and Jo.)
Jo had been forced to grow up quickly. By the time he started high school, his mother, Micheline, was in and out of care facilities. The genetic form of Alzheimer’s was known then, but, likely due to the limitations of small-town medicine, her illness was viewed as a puzzling mystery. Jo’s dad was consumed by his own problems, so Jo’s maternal grandmother and his teachers were his adult support system. His brother had gone off to college and returned home, but they weren’t close (Jo’s brother would turn out not to have the genetic mutation).
Robin, meanwhile, had grown up very close to a guy named Rylan, whose parents were friends with hers, and Rylan knew Shawn. They soon formed a tight nucleus within their larger social group. After Jo’s mom moved to a facility a 45-minute drive away from “Kap,” some combination of their foursome would go with him to visit her: a bunch of teenagers helping a friend face something that would buckle the knees of most adults. Robin was almost two years younger than the guys and, when she was in Grade 11, she and Jo started dating.
In January 1996, when Jo was 19, his mom died. “That was a day I would never want to recreate. It was beyond hell,” he says. “That kind of impeded my faith in anything, really.” He dropped out of school and started numbing himself with alcohol and drugs. Shawn and other friends tried to talk him into going back, but it felt futile and presumptuous: How do you tell a teenager who’s just lost his mother that he needs to get his life back together? “Robin was the person who saved him,” Shawn says. “It got to the point where he was willing to go back because she was there.” In the fall of 1997, Jo, Robin, Shawn and Rylan moved to Toronto and rented a house together. Robin and Jo attended York University, both studying English and history. Their relationship was on and off in those years, but there was always a sense of coming home. “Jo and I, we just always found each other again,” Robin says.
By that point, a PET scan would have revealed tiny snowdrifts of amyloid accumulating in Jo’s brain. An MRI would have shown the beginnings of atrophy in his hippocampus, the region of the brain responsible for making new memories.
Jo and Robin moved to Halifax so he could attend teachers’ college and she could go to grad school. One night, Jo came home and started picking away at his guitar, then played Wonderful Tonight by Eric Clapton and pulled out a ring. “He was as close to Henry Rollins as I could get in real life,” Robin smiles, comparing him to the musician, writer and spoken-word artist. And all Jo ever wanted was to be a teacher and to be with Robin. “Those were the two things that always centred him in his life,” Shawn says. “Whether Robin’s in the room or not, he’ll always say, ‘I don’t know what I ever would have done without her.’ ”
Robin moved to London for teachers’ college while Jo finished in Halifax, then she landed a job at H.B. Beal Secondary School, teaching English classes and First Nations students. Jo spent a year in Kap, teaching at their old high school and living with Robin’s parents, Kip and Kathy. Then he joined Robin in London and Beal became his home base, too; he couldn’t land a permanent teaching job, but he cobbled together enough long-term placements for a full-time schedule. In June 2009, they got married. Robin’s mom made her dress, and they had a 14-person wedding party; Shawn was Jo’s best man, and Robin had her sister, Taryn, and her childhood friends, “the Kap girls,” next to her. They laughed through the whole ceremony.
For Jo, teachers’ college was just walking through the door to who he’d been all along. “He didn’t want to be a teacher, he just was one,” Shawn says. The kids who needed Jo most always seemed to find him. Beal is a large high school renowned for its visual and performing arts programs; it was a natural fit for Jo, who devoured classical literature for sheer enjoyment and spoke music as his first language. His guitar was usually nearby, even at school, and he loved Pearl Jam, Bad Religion, Mumford and Sons, Black Sabbath and the Ramones.
By the time he was 30, five years before his symptoms would announce themselves unmistakably, Jo would have shown changes in his scores over time on certain clinical-dementia-rating scales and a standard memory test.
'It's kind of like you're going through a forest, and the more you walk into the forest, the leaves get bigger and bigger and bigger, and you just become overwhelmed,' he says. 'It's just something that you can't stand.'
Jo can’t recall when he first noticed something was wrong. The march of his illness makes it difficult now for him to tell the facts of his own story, but he can explain his emotions and experiences; he just has to work hard to make language obey him. “The first time that I realized was shocking. It was like I don’t know who I am, I don’t know what I’m saying,” Jo says now. “I don’t feel like myself because of this disease.” Sometimes the words that are available to him are one or two stops away from the words he really wants, rendering his thoughts slightly impressionistic. This is one way he describes living with dementia: “It’s kind of like you’re going through a forest and, the more you walk into the forest, the leaves get bigger and bigger and bigger, and you just become overwhelmed,” he says. “It’s just something that you can’t stand.”
After his diagnosis, Jo would tell his doctor he could remember moments in his mid-20s when he would feel momentarily disoriented while walking somewhere. And Robin can think back a decade to little things such as Jo forgetting to move the clothes to the dryer—but everyone does that once in a while. Just before that Christmas, in 2012, things changed. “At first, it was really subtle,” Robin says. “It just seemed like he couldn’t manage like he used to. He was a bit more scattered, when it came to work, which wasn’t like him.” Jo seemed withdrawn, too, his normally sociable nature giving way to someone who didn’t want to go out with friends.
He visited his family doctor, looking for answers. He had been diagnosed with depression and anxiety in university, and now the doctor focused on that and prescribed anti-depressants. Jo started seeing a counsellor, too. But nothing improved. Instead, the mundane little glitches started to arrive in a steady, ominous stream, and there were bigger moments that were unsettling in a way that became impossible to ignore.
In June 2013, Robin was helping Jo practise for interviews for the next year’s long-term teaching placements. He always did well because he was so articulate, but now he was tongue-tied, unable to explain concepts he knew thoroughly. “I remember being frustrated: ‘Come on, you’re such an awesome teacher, why can’t you just do this?’ ” Robin recalls. He came out of one interview and told her he’d blown it. “I couldn’t talk about anything,” she remembers him saying. “I don’t know what happened.” A month later, as they were both finishing up teaching summer school, Jo complained to Robin that there was something wrong with the report-card software. Robin helped him, but it didn’t make sense that he was struggling with a program he had used for years. “This isn’t normal,” Robin thought. “Something’s going on.” In August, they visited Ottawa, and Chazza and Shawn’s three-year-old son, Luke—his given names are Luke Joël Rylan, a walking tribute to those Kap friendships—suddenly asked, “Where’s Uncle Jo? That’s not my Uncle Jo.”
At first, Robin thought she just needed to be supportive and patient if depression was the culprit, but things only kept getting worse. She started to push Jo to insist the doctor take his problems more seriously. (The doctor did not respond to interview requests.) In September, he ordered an MRI, and told Jo the results were normal. In fact, the scan showed that the “sulci” in Jo’s brain-—the grooves in the cerebral cortex, which normally appear in cross-section like tightly folded fabric—were slightly widened, and the lateral ventricles were enlarged, revealing early atrophy. But they wouldn’t know that for months.
For Robin, the hardest thing was the change in Jo’s personality. He was usually a sunny guy, and the two of them could talk for hours about work or books or music. That was gone. And those little daily moments in which you know you are loved and part of a team because someone made coffee—it all disappeared. “When I look back, sometimes I think that was harder than when we finally got the diagnosis,” Robin says. “He was not the person I knew; he was not the person I married.”
At one point, Jo confessed to her he was afraid that what had happened to his mom was happening to him. Robin reassured him: It can’t be that. She realizes now that part of her knew already; she couldn’t help but connect the dots between his mother’s history, the research she’d done and how much Jo had changed. But still, a louder internal voice kept insisting it had to be something fixable—a brain tumour, something more plausible than Alzheimer’s disease in her 37-year-old husband. “I think in my gut, I kind of knew, but denial is a pretty strong survival mechanism,” she says.
As the 2013-14 school year went on, a chasm opened up between them. Robin is a person who gets things done, and her instinct when something is wrong is to grab it with both hands, figure out what it is and do something about it. To her, it was clear that Jo needed to see a specialist. Jo, on the other hand, is laid-back and sweet-natured, not someone inclined to demand answers. Of course, he wanted to get better, and he was taking medication and seeing a therapist, so what more did she want? Their relationship began to fray. “It was an ugly time for us,” Robin says.
For Jo’s co-workers, it was a long while before the small, subtle lapses added up. And the “Beal family” unconsciously camouflaged problems: They simply pulled together and helped Jo, without registering how often they were holding a door and beckoning him to the classroom next to theirs, or what it meant that he needed that cue. “Sometimes, he would have a bad day, but he had lots of totally fine days, too,” says Sandy Pool, one of Robin’s closest friends on staff. “We weren’t thinking big-picture at all. Not for a long time, at least.” But, as the school year wound down, Jo had a hard time following, or even finding, instructions left by teachers for whom he was substituting. He began teaching less.
The tension between Jo and Robin escalated into an ultimatum: He had to get more help, because she couldn’t keep living that way. Robin went to a doctor’s appointment with Jo in May, bringing along the autopsy report in which his mother’s illness had finally been diagnosed as Alzheimer’s disease. The document felt cruel in her hands, but she was desperate. She had to push the doctor relentlessly, but he finally conducted a memory test on Jo, and the results warranted an appointment with a specialist.
Jo was referred to Dr. Michael Borrie, a geriatrician whose soft and precise speaking voice still curls gently around a New Zealand accent, even after 30 years in London. He’s the medical director of the Aging Brain and Memory Clinic and cognitive clinical trials group at the Parkwood Institute, where Jo and Robin went for an hours-long diagnostic appointment in June 2014. Borrie went over Jo’s medical history and his mother’s illness with them, and Jo completed a battery of cognitive tests while Robin answered questions about what she observed with him day-to-day.
One of the tests Jo completed was the mini-mental state examination (MMSE), a widely used 11-question measure of cognitive function. Jo gave the year, season, date and day of the week correctly, but he said it was July instead of June. He rhymed off his country, province and city, but got the name of the hospital and the floor he was on wrong. When the examiner listed three objects, Jo could recall them all immediately, but a few minutes later, he couldn’t remember any. Patients are also asked to write a sentence of any kind, and they earn a point if it makes grammatical sense. Jo wrote, “I am a legend.” The final question asks people to copy a simple diagram of two overlapping pentagons. Jo’s drawing was slightly warped, but he got the necessary components right, and he rendered it with the fine, feathery lines of someone who has been drawing his whole life. The MMSE is scored out of 30. Doctors consider the test results alongside other information about how patients are doing, but generally, a score above 26 is normal; between 20 and 26 suggests mild dementia; 12 to 19, moderate dementia; and below 12, severe. Jo scored 23.
Borrie brought Robin alone into one of the little windowless consultation rooms tucked into a hallway near his office; he always speaks to caregivers first, to see if his diagnosis fits what they see every day in the person they love. There was finally an explanation for everything: Jo had Alzheimer’s disease. Robin felt frozen, barely processing the news; the thing they feared most, which had seemed so impossible, was real. Borrie gave her time to collect herself before he brought Jo in to tell him the diagnosis. Jo was devastated; he knew what this disease meant. He and Robin sat there together, struggling to absorb the words. As Borrie explained how the illness would progress, he tried to balance that with a little hope, outlining treatments that might slow the cascade of symptoms. But really, he spent much of the appointment simply consoling them. Robin’s enduring memory would be that while the doctor and his staff had diagnosed Jo with a fatal illness, they were so incredibly kind to them.
They were like zombies when they left the appointment. Jo, exhausted from the testing and emotionally wrung out from the result, collapsed into bed. Robin went to the grocery store, but she was so distraught, she couldn’t make her debit card work. Still, under the raw shock, there was something else, too. “There was also relief, at least, knowing this is what it is. We can name it, we can deal with it,” she says. “This is why the last few years have been so hard.”
Jo shut down completely for several days. As summer went on, he remained in his own private darkness much of the time, retreating even more than the Alzheimer’s had already caused him to. At the same time, there was a shimmer of denial: They both thought that if Jo took his medications, he could put the disease on pause. And there was some genuine hope, too, in the possibility that he could participate in one of the studies testing potential Alzheimer’s treatments, or that Borrie could persuade a pharmaceutical company to provide a drug in development on compassionate grounds. Chazza and Shawn came to visit with Luke and their younger son, Seth, and Robin’s sister, Taryn, was getting married in the fall, so there were happy events mixed in with the bleak reality.
In August 2014, Jo went to see Borrie again. At the first appointment, the doctor had started him on Aricept, a drug that reduces the breakdown of acetylcholine, a learning and memory chemical that declines in the brains of Alzheimer’s patients. Now that Jo’s system had adjusted, Borrie added memantine, a drug that normalizes communication between nerve cells. He also recommended an adult day program Jo could eventually attend, but Jo didn’t like the idea. He would be the youngest person there by decades. And he didn’t need another glimpse of what his future held.
'I am mine': The disease starts to show in Jo's writing
Jo completed these tests in order to monitor his disease. He was asked to write a sentence of any kind and earned a point if it made grammatical sense.
The consultation rooms where Borrie sees patients are wallpapered in diagrams he uses to explain things. One poster depicts a graph with three lines. The “natural disease path” of Alzheimer’s slopes inexorably downward at a cruel 45-degree angle; the second line, “symptomatic treatment”—the ideal outcome of drugs such as Aricept and memantine—runs parallel to the first, but hovers above it, showing everything a little better off but the basic disease path unchanged; the third line represents “disease-modifying treatment,” and, from diagnosis on, this route marches defiantly through the illness, nearly level with the horizon. For now, that third path—a cure for Alzheimer’s disease—exists only in the hypotheses and hopes of researchers.
Someone asked Barry Greenberg once in a job interview what his life goal was. He said he wanted the packaging for a drug that could treat Alzheimer’s disease framed on his office wall, knowing he played some role in its existence. He was 30 years old when he said that; he’s 59 now, and he’s still working on it. “We had a lot of hubris back in the day, when we first cloned the amyloid precursor gene, that we were gonna have this thing licked within a decade, in the 1990s,” he says of one of the genes that carries a mutation guaranteeing the disease. “Nature has a way of insidiously laughing at that.” Greenberg is director of neuroscience drug discovery and development for the University Health Network and director of strategy for the Toronto Dementia Research Alliance. He’s one of the people leading the search for a drug that could make that third strand on the chart on Borrie’s wall a reality.
The most active area of drug research right now is for the very early stages of Alzheimer’s, because the disease is already well-advanced by the time people experience noticeable cognitive problems. “What you’re trying to do is stop a disease process that’s already rip-roaring away in the brain,” Greenberg says. “I personally don’t think we’re going to be able to treat or cure Alzheimer’s disease once it’s established, because the brain is already significantly damaged.”
These “prevention studies” require a population of patients who are not yet symptomatic, but are guaranteed to get Alzheimer’s—people with a genetic mutation like Jo’s. There are currently three major projects under way around the world, administering intravenous antibodies and other selected drugs to patients in hopes the treatments can help remove the buildup of amyloid in the brain before it inflicts damage. It appeared initially that Jo was excluded from all these studies because his disease was too advanced, but Borrie found one he’s eligible for, and he’s working to make that happen. It’s too late for Jo himself to benefit, but the key to finding a cure for Alzheimer’s may well lie with people who have his form of the disease. “Here I am, 30 years out from what I thought was a seminal discovery,” Greenberg says, “and it was, in some respects. I’ve still got to say, optimistically, that we’re five years away from identifying something where we can say, ‘This is going to prevent the disease.’ ”
September was very hard for Jo and Robin. A new school year started, and Robin and their teacher friends went back to work, but Jo did not: His diagnosis and difficulties the previous spring made teaching an impossibility. On a visit to Ottawa that fall, Jo and Shawn went into the backyard one night with their drinks. Jo could barely get the words out when he told Shawn his teaching days were over. “I can deal with all this other crap, because it is what it is, but that hurt,” Shawn recalls him saying. “That’s me, that’s who I am.” The end of the career he was only just establishing made his illness brutally real. “The disease didn’t take his brain first—it took his happiness, his centre,” Shawn says. The last class Jo ever taught, the previous spring, was Robin’s.
She tried to make things sounds better: “It’s like you’re retired. How are you gonna spend your days?” she’d ask. But it was awful, for both of them. Teaching had been a huge part of their shared life, and while that was suddenly gone for Jo, she still walked out the door every morning to the place where they used to work together. Jo tried to fill his time: He wrote and sketched and read, and he would walk to a nearby library and bring home whatever caught his interest. “It sucks,” he says, “but you have to make the best of it, right?”
At the end of October, he saw Borrie again and repeated the MMSE. He performed better on the questions about time—for someone as intelligent and educated as Jo, there can be a slight uptick in performance with practice—but he guessed the building he was in was the Hospital for Sick Children. The strokes on his pentagon drawing were skilful as always, but one of the shapes looked as though it were made of popsicle sticks that had been pulled apart. For a sentence, Jo wrote, “I am mine.” The phrase didn’t make any sense, so he didn’t get a point for it. He scored 18 out of 30. An average decline of two to four points on the MMSE would be expected over the course of a year for a patient with Alzheimer’s, but Jo had lost five points in four months.
One evening late in the fall, Jo planned to meet Robin at Beal for a dance show. He was going to take a bus he’d been on countless times, but he got on the wrong one, then forgot where he was going. He hadn’t taken his phone with him, and Robin spent frantic hours trying to find him while he rode the bus to the opposite side of London and back. Finally, after midnight, Jo walked in the door of their apartment. That was the end of him taking the bus on his own. In December, Robin’s friend and co-worker, Sandy, took Jo shopping for Robin’s Christmas gifts. Robin had provided a list, but the point wasn’t for her to get what she wanted—it was all about Jo having a victory come Christmas morning. He and Sandy got the cookbooks and tea she asked for, then Jo picked out a Jack Johnson album. Robin loved it.
Then, in January this year, the ground dropped out from under them. Robin’s mom, Kathy, had been ill for a long time with heart problems. She caught pneumonia and simply couldn’t recover and, on Jan. 30, she died. Kathy was a creative force—she sewed, knit, quilted, painted and made pottery—who always told you what you really needed to hear, no sugar-coating; Robin is her mother’s daughter. Through the stormiest days of their marriage before Jo’s diagnosis, she never judged—she simply stood by them and loved them. “Moms just know, right?” Robin says, sobbing. “You pick up the phone, you talk to your mom, you don’t have to say anything. It’s a mom.” And her mother’s death was the first life-altering event for Robin during which Jo could not be her source of support. He would notice her sadness, but some days needed to be reminded over and over why she felt that way. As Robin recalls all of this months later, she and Jo sit on opposite ends of the couch in their living room, both of them weeping. He watches her with mournful eyes, as though he’s sitting just a little too far away to reach her.
Robin ordered a monitor bracelet. But who will look for an Alzheimer's bracelet on a man in his 30s?
One night at the end of April, things fell apart anew. Jo and Robin were in bed reading when Jo began flailing one arm and staggering around the bedroom. Robin was terrified. She managed to calm him down, and he said he’d thought there was something after him. Once he fell asleep, she spent the rest of the night online, researching Alzheimer’s and hallucinations. The next day, Jo seemed a little foggy, but otherwise normal, and they went out to run errands. While they were in line at a store, Jo suddenly stepped in close to Robin, threw a wild-eyed look over his shoulder, and launched into the same defensive motions. This episode lasted much longer; two men nearby helped Robin guide Jo to the floor and someone called the paramedics. “I was a total, total mess,” Robin says. “It was terrifying thinking, ‘Is this what it’s going to be now? Is this what life is going to be?’ ” After several hours in emergency, the doctors diagnosed Jo with seizures, which are not uncommon with Alzheimer’s disease.
The next day, he and Robin were in the car when he had another seizure. “His entire face blanked out,” Robin says. “It was like somebody else was there.” She asked if he was okay, and he couldn’t answer. She pulled the car over. “Do you know who I am?” she asked. No. “Do you know who you are?” she asked. No. “I’m Robin,” she said, horrified. “I’m Robin?” Jo asked. “No, you’re Jo. I’m Robin, I’m your wife,” she explained. “Okay, you’re my wife,” Jo replied.
“That was the worst,” Robin says. “All of a sudden, it was like we went off a cliff.” Jo came out of the episode quickly, but Robin was shaken to her core. The next day, Jo saw Borrie and, not long after, he went to a seizure clinic, where they put him on seizure medication. For a week or two after the incidents, it was as though the Alzheimer’s had leaped ahead several months. But soon, the hangover effect wore off.
Jo did the MMSE again at Borrie’s office; it had now been nearly a year since he was diagnosed. It was April 2015, but he guessed the year was 2014 and the month was September, and he couldn’t name the building where the clinic was located. One of his pentagons looked as if it had been broken open and moved to one side, and his sentence was, “I am awesome!” This time, he scored 14 out of 30. (He may have still been affected by the seizures; a few months later, his score improved to 16.) He was 38 years old.
Part of Jo's cognitive function tests involved copying a drawing of two overlapping pentagons. An average decline is two to four points on the test over a year. Jo lost nine points in 13 months. A score from 20 to 26 suggests mild dementia.
It’s sometimes difficult now for Jo to keep track of the words or ideas in a conversation, so he uses emotion as an entry point instead. He focuses on people’s expressions or individual features to read the mood, and he’s often animated and sardonic in his responses. A conversation is easier if it’s a familiar topic or in a quiet environment with people he knows well. “Sometimes I get nervous and just start creating alphabet,” he says. “It’s just a mess.”
One Saturday in mid-June, he and Robin joined Sandy, her husband, Joe, and their five-year-old daughter, Chloe, for dinner at a gourmet burger place downtown. The restaurant was noisy and crowded. Jo initially decided on a burger, but the server bombarded him with options, and when the food arrived, it turned out Jo had ordered a bucket of poutine. When they’re around people who don’t know about the Alzheimer’s, Robin keeps tabs in case Jo needs a hand, but otherwise lets him be. “The waiter didn’t know. He thinks he’s a 30-something dude out with his friends, ordering supper,” Robin says. “It’s almost like an invisible illness.” Later in the meal, Jo leaned toward Joe (they call them Jo-Jo and Joey, respectively, to keep them straight) and growled in a goofy voice, “Drink your Coke!” Drily and lightly, Robin said, “Don’t make it weird, Jo. Don’t make it weird,” and the conversation rolled on. “Things got weird” is their shorthand for moments when Alzheimer’s elbows its way in. Just as there are familiar places that are easier for Jo to navigate, there are also friends with whom everything is fine, no matter what. When Robin talks about the constant concessions they must make to this greedy disease, she says, “This is the reality” often, as though she’s reminding herself there’s no point in wasting energy fighting it. There are moments when you can practically see her taking the things that are too hard to look at and bundling them off to one side. “For better or worse—I’m not sure yet—one of the things I am good at is I can compartmentalize,” she says. “It’s an emotional thing, but you have to leave your emotions out of it. You can’t think about all the stuff that you wanted to be, or hoped to be.”
But it’s different with Sandy and another friend, Sue Silcox. They both teach English at Beal, and the three of them have one of those friendships you see in a sitcom and wish for in real life. On a steamy Sunday near the end of the school year, Robin met them for lunch, and she was still five feet away from the table when Sue launched into a story about being shocked by the electric fence at her parents’ farm. They spent the next hour alternating between crying and laughing, telling each story as a group performance. For Sandy, the hardest thing is when she knows Robin is just shoving aside things she can’t deal with because she’s in survival mode. “I know that, when she’s ready to open that box, it’s going to be awful and ugly and sad,” Sandy said. The waiting is worse than when it all falls apart, because then they simply put their arms around Robin. A short time later, Sandy said something that made Robin cry, and Sue rummaged in her purse and pulled out a weird little knitted cloth her daughter picked up at a church retreat. “I only have a prayer shawl,” Sue deadpanned, handing it to Robin in lieu of a tissue. The three of them stared at it, then shrieked with laughter. Robin and Jo’s friends always want to know how they can help and, since they can’t do what they really want—fix everything—they’ve learned the importance of frozen yogourt runs, nights out where you pretend everything is fine and breaking the tension. “I miss Jo, too,” Sue says softly.
Jo's things: The following items, from puzzles to cats, are special to Jo
Alzheimer’s demands new counter-manoeuvres all the time, but that becomes invisible in the blur of everyday life. It’s only when they look back that it becomes clear how much has changed. Last fall, Jo needed only a few basic reminders from Robin to manage his day. By the end of the school year, that evolved into extensive night-before preparations and a daily memo reminding him of medication, meals and the right clothes for the weather. Robin also started drawing two little boxes on the note where he could check off his allotted cups of coffee, after she came home a few times to find a pile of empty K-Cups and an extremely caffeinated Jo who had lost track of his guzzling. “I felt great,” Jo declares with an enormous smile. “I was energetic, I could go and run.”
Jo often starts a chore and get distracted; they joke he’s like the dog in Up, powerless to resist the allure of a squirrel. But recently, Robin realized Jo was leaving dishes on the counter not because he’d abandoned emptying the dishwasher, but because he no longer knew where they went. They talked about labelling things, but Jo doesn’t want that. “I don’t want to live in a museum,” he told her. “I still want it to be home.”
There’s a sign on the inside of the apartment door at eye height, reminding Jo to text Robin where he’s going before he leaves, to write a note reminding himself of his destination, and to text Robin when he returns. It’s not a perfect system, but it helps while she’s working. Jo loves to listen to music and walk the streets around their apartment. He relies on a sort of intuitive assessment to know where the edges of that territory are: If the street signs and the view around him are familiar, he feels a general comfort that tells him it’s a good zone in which to travel. Robin is grateful for the Find My iPhone function, because she can check on him remotely if he doesn’t respond to her texts. “There are times he’s going to go out and I’m not going to know about it,” she says. “It’s very stressful to think of those situations in the future, but we can only deal with them when they come.” She’s ordered a monitor bracelet, but she worries about whether it will be helpful: Who would think to look for an Alzheimer’s bracelet on a man in his 30s?
Before Alzheimer’s moved in, their Saturday-morning ritual was grabbing coffee at Starbucks, heading to Covent Garden Market and running errands, and the rule was: No talking about work. They kept up that routine, even when work was no longer something they could talk about. But then there were a couple of incidents when Robin went to use a washroom and, when she came back, Jo was gone. “It feels like I have no idea where I am, and I have to start walking somewhere so that I can find something,” Jo explains. “I have to find her, because, obviously, she’s the one that’s gonna pick me up.” Those moments are awash in panic for both of them, so now the rule is that they stay within eyesight. The perpetual balancing act between Jo’s independence and his safety is hard on both of them. “It’s frustrating,” Jo says. “And I know that Robin doesn’t mean to be condescending, but . . .” She agrees with him, instantly and gently: “It feels that way, sometimes.” Each time Robin writes one of those increasingly detailed notes for Jo, she asks if it’s okay with him. And it isn’t, really, and she knows that, but this is what they have to do, and he knows that, too.
'When I look back, sometimes I think that was harder than when we finally got the diagnosis,' Robin says. 'He was not the person I knew; he was not the person I married.'
Before Jo’s diagnosis, the unknown enemy strained their marriage to the breaking point. Now, the disease has fundamentally altered it. “Jo is not able to do anything that you would consider in a marriage. It has really turned into a caregiver role; I am taking care of him,” Robin says. “There’s still a lot of love there, but it’s not a relationship that is two-sided. It just can’t be.” It would be a mistake to look at that clear-eyed assessment and think those words aren’t costly for Robin. “It’s hard sometimes, because when you say, ‘my husband,’ there are these things you think of that a husband is—and he was, for sure—that just aren’t there anymore,” she says. Asked how he feels about it, Jo says, quietly and deliberately, “I would love to be able to be the person that I was, but it’s not going to happen.”
One of the reactions Robin finds bizarre is when someone gushes that it’s so wonderful what she’s doing for Jo. This is ludicrous and insulting to her, because, if she just can’t quite put Jo in the “husband” box anymore, here is what he is to her, and what that means: “He’s still my family,” she says. “If your family is in trouble, you take care of them. There isn’t another choice. You don’t just walk away.” Robin has contemplated whether she would feel differently about what Alzheimer’s has done to their marriage if they were four decades older. She doesn’t think so. “You’re mourning the person who’s sitting on the couch with you,” she says. “There are glimmers now and then, but the essence of the person is changed.”
Alzheimer’s has taken so many choices away from Jo. He didn’t get to decide when his career ended, or when the plots of his favourite books slipped away, or how this disease affected his wife and the other people who love them. So here is what Jo wants now: He wants to decide how much suffering is too much, and when his life should end with dignity, and he wants to be able to communicate so he can say goodbye. What he does not want is to linger in a care facility. “Thinking of my mother and how she suffered for so many years, it’s not right,” he says, weeping. Robin talks, ever so gingerly, about why Jo wants to draw his own line in the sand, and he reaches out to touch her for the first time, tentatively stroking her leg. “It’s a disease where there isn’t a whole lot of hope. There is zero chance of a happy ending,” she says. “That’s just the reality of the treatment of the disease right now. The only thing in front of us at the end of the disease, and Jo’s life, is a very, very horrible way to die.”
They’re working with lawyers to try to find a way for Jo to record his wishes, so he can speak for himself in the future. On Feb. 6, 2015, the Supreme Court decriminalized physician-assisted death for people suffering with a “grievous and irremediable” medical condition. The court suspended its ruling for a year to provide time for a change in the law, and the federal government may ask for an extension. However, the court said nothing about dementia in its decision and, even in jurisdictions such as the Netherlands, where people may request an assisted death through advance-care planning, doctors have been extremely reluctant to act on that. Dementia is problematic, because, at the point when people may want their lives to end, they are no longer capable of giving consent and, when they could still consent, most would consider it too early to die. “The process is really fraught at the moment, and Canadians are not in a position to have their wishes respected, and we need to change that,” says Wanda Morris, CEO of Dying with Dignity Canada. This does not feel like an imminent issue for Jo, but the path of his disease is unpredictable. “We’re in a bit of a race against time,” Robin says.
'It’s a disease where there isn’t a whole lot of hope. There is zero chance of a happy ending'
In the Alzheimer’s landscape, it’s nearly as hard to know what’s around the next bend as it is to predict the far horizon. Summer once again offered a little reprieve, but, as for what life will look like in the fall and beyond, they simply don’t know. Jo has started spending two days a week at a day program run by Alzheimer Outreach Services of McCormick Home. The program is filled with thoughtful touches: The walls are covered in exquisite artwork created by clients, there are real bowling shirts for the raucous Xbox Live bowling league, and staff members communicate on headsets rather than a barking PA system. Jo is the youngest client they’ve ever had, which is one of the reasons he was once so reluctant to consider it, but it’s a warm place of real humanity. “We will surround them,” says Karen Johnson, the program’s director. “We will surround this family.”
Jo and Robin’s world now mostly revolves around their apartment and the homes of close friends, where they can relax and drop the effort-: If Alzheimer’s hijacks a conversation, everyone understands and nobody cares. They live in the perpetual present now. Every day is different and the larger reality is as vast as the sky, so they’ve learned to inhabit one square on the calendar at a time.
There are victories and heartaches in tiny daily moments that might escape notice in a different sort of life. One night in June, when Robin was working furiously on a curriculum project, Jo made dinner for the two of them. He had to put the chicken back on the grill three times to make sure it was cooked, and he served it with an unconventional side dish of pickled beets, but it was a thoughtful kindness Robin loved. A few days later, she came home from work to find the strings yanked off Jo’s guitar-. He was playing and tried to adjust the tuning, but something went awry. After they cleared away the mess, they sat on the balcony, had a beer and listened to Pearl Jam, and the night got a lot better. Near the end of June, Jo went back to Kapuskasing to stay with Robin’s dad for a few weeks. Jo and Robin talked one night, and he was so excited about buying the new Mumford and Sons album; that made her happy, but with a heavy heart, because they already own the album and have listened to it a few times.
On the sunny yellow wall of their living room, just above a big pile of Robin’s mom’s sewing supplies, hangs one of Robin’s artworks. It’s a map of Ontario, with Kapuskasing featured prominently, and stencilled on the map are the words, “I am mine.” She made the piece two years ago, long before Jo was diagnosed.
Here’s the thing: Jo deserved one more point on that memory test he did back in October. When he wrote, “I am mine,” it looked as though it didn’t make sense. But it does—and he wrote the same sentence on the test again a few weeks ago. That’s a Pearl Jam song, and the lyrics go like this:
“The north is to south what the clock is to time / There’s east and there’s west and there’s everywhere life / I know I was born and I know that I’ll die / The in between is mine / I am mine.”
That wasn’t Alzheimer’s. That was Jo.