Robin Giles is waiting at the entrance of her London, Ont., apartment building when the little white bus pulls up at the curb. The door to the lift swings open to reveal her husband, Joël Aubin, sitting in his wheelchair, grinning broadly at her. His arms undulate through what looks like a slow-motion drumming routine, and he snaps his ﬁngers continuously.
The wheelchair lift has jammed, and after the bus driver makes several attempts to get it working, she asks Robin if she can get Jo — as he’s known to most everyone in his life — off the bus without his chair. “We can try,” Robin says.
She climbs aboard, takes Jo’s hands in hers and coaches him to stand and follow her down the aisle. As is nearly always the case when Robin is within range, Jo’s gaze rarely strays from her. She backs down the bus steps and talks him down them one at a time. It takes Jo a couple of tries to climb the high curb, then he settles into the wheelchair the driver has extracted through the rear door.
Jo turns to Robin. “Holy s–t!” he exclaims. Robin and the bus driver roar with laughter.
This is the routine — minus the glitch with the lift and Jo’s perfect comedic expletive — every weekday around 3 p.m. During the school year, when Robin is teaching, her dad meets the bus every day when Jo returns from a day program, and Robin comes home soon after.
Four years ago, Jo was diagnosed with dominantly inherited Alzheimer’s disease, an extremely rare form caused by a genetic mutation slithering through his family tree. Jo watched his mother die of the same illness when he was a teenager. Even in this early-onset form of Alzheimer’s, Jo is a terrible rarity: he was 37 years old when he was diagnosed.
Read the first story about Jo: Jo Aubin has Alzheimer’s. He’s 38.
Now, Jo is 41 and Robin is 40, and they are navigating unthinkable territory. The “bastard monster,” as Robin sometimes calls Alzheimer’s, has been swift and relentless, but the assault has been particularly vicious in the last six months. Jo’s ability to speak has all but disappeared, his mobility is reduced to a slow, assisted shuffle around their apartment, and he requires hands-on help with every task of daily life, from dressing and brushing his teeth to eating and safely sitting down in a chair.
So far, with the help of her family, the day program and the sheer force of her own will and devotion to Jo, Robin has managed to provide all his caregiving at home. Families of people with dementia land in different places on this issue, but to her, it’s beyond question that Jo is not here anymore; most everything that made him Jo has been stolen. “But it’s almost like an echo that’s left,” she says. “It’s like I want to take care of this Jo because it’s honouring the real Jo.”
When she’s forced to move Jo into a nursing home and Robin loses her ability to care every day for the echo of the man she married, that will mean he’s really gone. “Sometimes people very kindly say, ‘Oh, it will be better when Jo is living somewhere else.’ No, it won’t. That’s the part that people don’t understand. It won’t be better. It will be the worst part,” she says through sobs. “Because I don’t consider what I’m doing a negative thing.”
But Robin knows a reckoning is imminent. And she also knows, because they talked about it many times before Jo lost the ability to have those conversations, that he despised the idea of going into a nursing home. In recent months, Robin felt compelled to put Jo on two waiting lists, but what haunts her is that he still seems so aware, she can’t imagine wrenching him from the peaceful, comfortable world they’ve built around him at home. There are still those fleeting moments — like his response to the ordeal of navigating the bus steps — when the old Jo resurfaces and announces himself with surprising clarity.
After saying goodbye to the bus driver, Robin guides Jo’s wheelchair onto the elevator and pushes the button for their floor.
“He’s not ready to go anywhere yet,” she says. She looks at Jo, then reaches over and ruffles his hair.
Robin greets Jo and wheels him up to their apartment as he arrives home from his day program at McCormick Home. (Photo, Chris Donovan)
More than two years before Jo was diagnosed, bizarre little glitches began to suggest something was terribly wrong. There were Christmas gifts that made no sense, problems with software he’d used for years or basic household tasks that went ignored. He saw his family doctor repeatedly, but medication and counselling — based on the assumption that the problem was depression or anxiety — went nowhere. Eventually, Jo was less able to teach high school — he was working at the same school as Robin — and their marriage frayed.
Finally, Jo’s doctor referred him to a specialist, and in June 2014 he was diagnosed with Alzheimer’s. A year after his diagnosis, Maclean’s chronicled his story to that point. Jo — so articulate that it had always been a running joke among his friends — struggled slightly to make words do his bidding, but he explained what it was like to live with dementia. “It’s kind of like you’re going through a forest,” he said. “And the more you walk into the forest, the leaves get bigger and bigger and bigger, and you just become overwhelmed.”
Jo was adamant that he didn’t want to end up in a long-term care facility like the one in which he’d visited his mother—sometimes with Robin along for the ride when they began dating as teenagers in Kapuskasing, Ont. — and he hoped that Canada’s legalization of assisted death would allow him to avoid that. But when medical assistance in dying became law in 2016, excluded were “advance directives” that would have permitted people with dementia to set out terms for their death while they still had capacity to consent.
Now, that dark forest Jo described is closing in. “In a lot of ways, it’s good that you don’t know what was coming, because if you knew, you would probably run away screaming,” Robin says. “But like everything else, it’s a progression where you look back and think, ‘I don’t know how we got here.’ ”
She thinks of life in chapters divided by school years. Last fall, Jo’s mobility was fine, and they could still go to the movies or grocery shopping, though she had to ensure he stayed with the cart. He could no longer speak in full sentences then, but he could tell her his preference if she gave him options.
Now, Jo’s communication is mostly reduced to quiet, monosyllabic responses to yes-or-no questions, along with the occasional full phrase, often in humorous contexts. This spring, he began to use a wheelchair at the day program and on the bus, because he was having trouble navigating steps and had fallen occasionally when he misjudged the location of a chair.
Mostly, Jo looks like any guy in his early 40s and just like he always has, because even as he’s had to switch to comfortable clothing with no buttons or zippers, Robin has stuck close to his personal style; his wardrobe is still heavy on band T-shirts. But there’s a sort of veil in his gaze now and a relaxed softness in his facial features. When Instagram or Timehop present Robin with old photos, she can see some important source of light in Jo that’s gone now. A trip to the beach two years ago seemed ordinary, but when the photo appears, she can remember the day vividly: a postcard from another world where such things were possible. “It’s pretty devastating,” she says. “But also it’s nice to remember those times.”
Jo is fed lunch at McCormick Home. (Photo, Chris Donovan )
Doctors often use the term “insight” to discuss whether a person with dementia is aware of their condition; some people come in for an appointment furious at a spouse who keeps insisting they’re losing track of things when they’re sure they’re not. Jo was acutely aware of his illness early on, and he and Robin talked about it often. “He was just frustrated by the hand he was dealt, and he was always, always worried about being a burden,” Robin says. “We would tell him, ‘You’re not.’ ” Jo stopped having those conversations about a year ago.
Robin has continued to work full-time out of financial necessity and to maintain a little island of normalcy with a job she loves. There are two big reasons she’s been able to do that and still care for Jo at home: the McCormick Dementia Services day program, and her father, Kip Giles. “I literally don’t know what I would do without him,” Robin says.
Three years ago, she called him in Kapuskasing and asked if he would consider moving in with them for the school year. “I immediately responded within a second or two, ‘Sure, of course,’” Kip says. Robin’s mother, Kathy, had died of complications from heart problems and pneumonia in January 2015, so Kip was on his own, and his reasoning for immediately saying yes matches Robin’s explanation for her devotion to Jo: when your family is in trouble, you’re there — that’s it. “Why sit up here, 1,100 km away and be by myself, when I know my daughter needs my help?” Kip says. “Realizing that I was going to be able to help in any way that I could made me feel like a parent.”
One of the first times Kip met Jo was shortly after he and Robin started dating in high school, when there was a party going on next door. “I wouldn’t say he was completely inebriated, but he stumbled in the front door,” Kip says, chuckling. “My wife and I both turned and said, ‘Oh yeah?’” Jo’s home life was rough, so he more or less moved in with Robin’s family.
Now, each fall when Kip returns to London after spending the summer at home, it’s jarring to see the changes. His first reaction is always anger at what’s happening to Jo, though he keeps it to himself. One of Robin’s frequent refrains is, “It is what it is.” And Kip thinks that makes sense, but even though he and his family are not at all religious, he can’t help wondering if there isn’t something more. “When you’re faced by a situation like we are, you have to think, is there some sort of plan going on here, some sort of test? Why did it happen to us?” he says. “And of course, the answers are still out there somewhere.”
What It Feels Like To Be Panicked All The Time
Another big piece of the puzzle Robin assembles for Jo’s care is the day program he attends every weekday, where his youth and exuberance have endeared him to the staff. Karen Johnson, director of McCormick Dementia Services, thought it was cool when baby boomer clients added the Rolling Stones and ABBA to the musical rotation. But then Jo showed up and they started playing Pearl Jam. “He’s been a gift,” says Johnson. “He’s been an absolute gift.”
When his mobility was better, he often strolled around the common area. One day, a diminutive older man tottered past Jo anxiously with his cane. Jo threw an arm around his shoulders, leaned down and planted a kiss on top of the man’s bald head. The staff lost it. Sarcasm is often one of the first things people with dementia struggle with, Johnson says, and some get deeply suspicious, unsure how to process subtle humour. Emotionally, Jo has landed in quite a sunny place, and it’s most often in smartass moments that he returns to himself and drops a choice one-liner, with brief, remarkable social clarity. “He’s a beautiful enigma,” Johnson says.
Staff thought he looked like a volunteer when he first came to the program. Even now, though he remains in his wheelchair and is much more an observer than a participant, Jo looks elementally wrong for the setting, like a grandchild who came to visit and got misplaced. His presence proved a startling education even for people who work in dementia care. “When Jo came, I started writing a letter to my kids: ‘If this happens to me, I want this, this, this, this, this,’ and they know where it is on my computer,” says Sue Rumble, the nursing care manager at McCormick, choking up. “Because I never thought [about it] before: What if, in two years, I get the diagnosis of dementia? What if I can’t tell my kids what I want?”
In January, as Jo’s needs increased markedly, Robin forced herself to put his name on the waiting list for McCormick Home, which is part of the same facility as the day program. That wait-list is years long, so it was a way for Robin to do the thing she dreaded without really doing it. And if by some miracle Jo did get a spot, Robin told herself it wouldn’t be so bad for him to go to a place that had already become his “second home.” Still, this step was so painful that Robin refused to think about it in the days afterward.
The progress of Alzheimer’s forces constant little adjustments, but Robin and Kip have developed a daily routine they share for Jo’s care during the school year, and Robin and Jo navigate on their own during the summers. “It’s not hard to take care of Jo right now — it really isn’t,” Robin says. “It’s exhausting and it’s really sad, but it’s really not that hard.”
Jo has been incontinent for months, so after she wakes him up in the morning, Robin changes the special briefs he wears and helps him dress. She settles him at the centre of their L-shaped sofa and gives him his medication, then he watches TV while she prepares breakfast.
They mostly watch the Comedy Network, because although Jo used to love horror movies, anything too aggressive or emotional bothers him now. Music is similar. “We found out the hard way we don’t put Peter Gabriel on for him,” says Robin, recalling the time they found Jo weeping in his headphones.
He seems to quickly lose interest in any new television show, but the ones he watched before Alzheimer’s encroached — Seinfeld, The Big Bang Theory and Mike Molly — hold his attention, and he sometimes interacts with the characters. Anytime Donald Trump appears onscreen, Jo recoils and snarls with disapproval; he was aware enough when Trump was elected to have decided this is the appropriate response to the President.
Robin can instantly read every one of Jo’s reactions, and she explains them not in the manner of speaking on behalf of someone who cannot speak for themselves, but the way you might translate from one language to another. When she perches next to him on the couch to feed him or brush his teeth, the gentleness and respect of the gesture lies in how casual it is: this is just what we do now, you and me together. No big deal.
Robin and Jo hang out with Robin’s sister, Taryn, and her father, Kip, who also act as caregivers to Jo. (Photo, Chris Donovan)
But the disease seems to progress in plateaus connected by sudden declines. By spring, Robin could not ignore the vicious slope of things. There was an entirely sleepless weekend over Easter when Jo reacted badly to a change in medication, and the crisis pushed her to look at other facilities. There was one, just outside London in Komoka, Ont., that caught her attention. The grounds were beautiful, and, when she drove by a few times before she could bring herself to make an appointment for a tour, something about it felt right.
But this time, putting Jo’s name on the list meant a concrete step toward the eventuality Robin still couldn’t contemplate. Because this nursing home is on the outskirts of the city, seniors who don’t drive have difficulty visiting, so the waiting list was only a few months long. If Jo’s name came up, Robin would have 24 hours to accept the spot and five days to move Jo in; if she declined because she didn’t think he was ready, they would close Jo’s file for 12 weeks and she’d have to start the application process again from the bottom of the list. Robin wanted every possible day that she and Jo could have together at home, but it was impossible to know where they’d be if she turned down a bed and his file was locked in purgatory for months. “That system is brutal,” she says. “You kind of have to be ready to pull the trigger.” Ontario’s Ministry of Health and Long-Term Care says the system is designed this way “to facilitate timely transfer and to avoid delays for other applicants.”
Robin pushed the decision away as long as she could, then finally put Jo’s name on the list at the end of June; there was no way to know how quickly the wait-list would move.
Right around that time, Shawn Veilleux, Jo’s best friend and the one person in his life who has been around longer than Robin, visited from Ottawa. He’s been rocked by Jo’s deterioration in recent months, but he still catches these brief glimpses of his friend. Shawn would say something deliberately stupid, and all of a sudden he’d see a look he knew well: a grimace of disapproval before Jo turned away, snickering. It was Grade 9 in Kapuskasing all over again. “I knew he got the joke,” Shawn says.
During that summer visit, Shawn could tell Jo knew him immediately, and it took him a little while to recognize his wife, Chazza Currie. But it was clear Jo couldn’t quite place their sons, eight-year-old Luke and five-year-old Seth. Then, when they were getting ready to leave, Jo folded Luke into an enormous hug and kissed him. “Didn’t know his name, couldn’t say his name, but the hug he gave him was genuine,” Shawn says. “It was the only way he could say it, but it was, ‘I know who you are.’ ”
Robin can’t even look at Shawn when he’s around, because she can see the devastation in his face. Shawn sharpens Robin’s kitchen knives every time he visits, because there’s really nothing anyone can do — but you have to do something, so that’s what he does.
Shawn is haunted by a conversation he and Jo had after the diagnosis. They were at a barbecue and the two of them went for a walk alone. Shawn says Jo asked him to promise he would never let him go into a nursing home, that he would help him find some way to end his life on his own terms. “That’s the hardest story to tell: a buddy asks you to help him die before he ever has to go into a place like that, but there’s nothing you can do,” Shawn says, weeping. “I told him, ‘I need you to tell me when you’re ready. How are you going to know?’ He said, ‘I don’t know, Shawn.’” They never spoke of it again.
When I Was Diagnosed With Cancer, My Wig Became A Lifeline
A swift and merciful end to Jo’s life is also the only deliverance Robin can see from this choice she doesn’t want to make, and the eventuality Jo never wanted for himself. “It sounds horrible, but when I go in every morning, there’s a split second where I just hope that he’s passed away,” she says. “Every morning, I just think maybe he’s had, I don’t even know what—an aneurysm or a stroke, something that took him peacefully while he was sleeping.” It is appalling to her that Jo’s own wishes for the end of his life don’t appear to count for anything.
In the early days after Jo was diagnosed, Robin tried a support group. But the format just wasn’t for her, and anyone close to her age was caring for a parent or grandparent with dementia. Instead, it has been in the experience of losing your spouse when your lives are just being constructed, not Jo’s specific diagnosis, where Robin has found fellow travellers. She clicked with an online community dubbed the Hot Young Widows Club, founded by a woman whose husband died when they were in their early 30s. Robin also has a close friend — one of her “Kap girls” — whose husband died of cancer a year and a half ago, and there, too, she’s found a connection.
Taryn Giles, Robin’s younger sister, is another key thread in their support system. When she ﬁrst met Jo as a self-described surly 12-year-old, they often sparred, but as time went on, they developed a close relationship based on unrelenting sarcasm and long conversations that were “most often ridiculous, but sometimes profound.” Taryn lives on a farm just outside London with her husband and visits often to help care for Jo, or simply hang out.
At first, when Jo would experience a sharp decline, Taryn didn’t know how to talk to him, so she would bury herself in a book at the other end of the couch. “I didn’t know how to reconcile the fact that I’m going to talk to you and you’re not going to be able to talk back to me, and that is the opposite of my relationship with Jo. So it was really, really hard at first,” she says. “And then I just thought, ‘Well, screw it. I feel worse if I’m sitting here ignoring you.’ ” So now, she tries to talk to him the same way she always has, and she hopes that resonates with him.
Recently, Jo and Robin were hanging out at Taryn’s house. Taryn’s fiery personality has long been a running joke, and as she was venting about her day, she commented that she was feeling crabby. Jo turned to her and remarked with incredulity, “You?!” When Robin and Taryn — clearly loving it — retell this story later, Jo chuckles and says “Bee-beep!” in a sort of cartoonish trumpet sound effect when they reach the punchline. That sets off another round of appreciative laughter from the two women. This noise — or a well-chosen curse word—are the ways Jo chimes into a conversation now, almost always with dead-on comedic timing. As language has become less and less available to him, it appears he may be using a sort of musical substitute to make himself heard.
Music is interpreted in a different region of the brain from speech, says Dr. Michael Borrie, Jo’s doctor and a geriatrician and medical director of the Aging Brain and Memory Clinic at Parkwood Institute. So people with advanced dementia may be completely unable to answer verbal questions, but still be capable of singing entire phrases of familiar songs. “A different part of the brain circuitry is involved with music, and it seems to be preserved longer,” Borrie says. “Eventually, it would be lost as well, but even as people are dying with dementia, families will often ask to play their favourite music and it seems to have a calming effect, at least from the family’s perspective.”
Jo’s cognitive function has fallen off much more swiftly than would normally be expected, so Borrie has stopped testing that now. He doesn’t want to cause unnecessary “anguish” — more for Robin at this point than for Jo. One of the questions on the standard exam asks the patient to write out any sentence, and Jo has repeatedly scrawled “I am mine,” which is the name of a Pearl Jam song; Borrie says it happens sometimes that people get stuck on a particular phrase.
Robin poses for a portrait in her living room. (Photo, Chris Donovan)
A standard test for depression in dementia patients shows a reduction in Jo’s angst over time as his awareness of his illness has gradually evaporated, and that too is not uncommon. The Zarit Burden Interview score, on the other hand, measures how the demands of caring for a person with dementia change, and that metric has marched steadily upwards. The test consists of a series of questions such as, “Do you feel that your social life has suffered because you are caring for your relative?” Caregivers like Robin answer with five responses ranging from “never” to “nearly always.” A cumulative score is assigned based on the responses; in broad terms, below 21 suggests little or no burden, 21 to 40 mild burden, 41 to 60 moderate and above 61, severe burden. In June 2014, when Borrie diagnosed Jo, Robin’s responses added up to a Zarit Burden score of 27. When they saw the doctor this May, it had reached 48.
Robin has been “remarkable in her resolve” to keep Jo at home, Borrie notes. She would ideally like to keep him at home until the very end of his life, when he could enter a hospice to die, though she knows that is unlikely to be feasible. The most common causes of death in people with dementia are dehydration if they can no longer take in food and liquid, or pneumonia if their ability to swallow is so compromised that they choke and aspirate food, which causes an infection in their lungs. But there really isn’t an expected prognosis or timeline.
Borrie does not view it as his role to discourage caregivers from any plan. Rather, he tries to get them to talk about a “threshold” at which they could no longer look after their loved one’s needs, or would feel it was more acceptable to move them into long-term care. Even still, after some people move into a nursing home, certain caregivers are so hollowed by guilt that they won’t leave their bedside. “They sit like a vigil,” Borrie says. That’s when he and other staff members will intervene, attempting to grant the caregiver the absolution they have denied themselves. “Our role is to say, ‘There is going to be a time beyond this time, and you have to give yourself permission to recognize that you have honoured their wish and kept them home as long as you possibly could,’” Borrie says.
In late June, when Robin forced herself to put Jo’s name on the waiting list for the nursing home in Komoka, she hoped they would have the summer together and could see what happened after that. At the beginning of August, they had a routine home visit from the Local Health Integration Network (LHIN) that administers all health and long-term care issues regionally across Ontario. These meetings are frustrating, because they get someone different every time and it often seems to Robin that they haven’t read Jo’s file. The caseworker glanced at her computer screen and announced that Jo’s name was next up on the waiting list; it could be months or a matter of days. “It knocked the wind right out of me,” Robin says.
Afterward, she talked to Jo about it. “I just wanted him to know that it was happening and I found another place where they could take care of him because I won’t always be able to take care of him,” she says. “I was obviously a mess and he got pretty teary when I was talking to him. And I asked him, ‘Do you understand?’ and he said, ‘Yes.’ How much he really understood I don’t know. But I think he did.”
She knows that if Jo could, he would tell her it’s okay, just as surely as she believes he would be saying that for her sake and not his own. To Robin, she and Jo stopped being husband and wife a long time ago, but he’s her family — “my person” — and her role now is to be his advocate and to provide comfort, which means everything from his basic needs to little daily joys. There is no magic epiphany that smooths over the twisted intimacy of providing nursing care for your own husband. “You just do it,” Robin says, her voice breaking. “I don’t really know. I just think, ‘What would he do for me?’ He’d probably do it a lot better. He’s much more patient than I am.” She’s thankful that at this point, Jo seems mostly unaware of what’s going on, but sometimes when she’s helping him to change or shower, a look crosses his face that suggests he knows exactly what’s happening and is not okay with it.
When Borrie speaks of helping caregivers identify reasonable thresholds and find some clemency there, the problem is Robin doesn’t feel anywhere close to her limit. One day, she knows, she will be physically unable to care for Jo anymore because he’s a big guy and she can’t lift him. But they’re not there yet, and so she’s not there yet.
There is a sense that the people close to the two of them think a lot about the toll of all of this on Robin, but she considers that a virtually irrelevant variable. Or rather, she understands the calculus in a different way. She hates the term “self-care,” for one thing. “People are always saying, ‘You have to make sure you take care of yourself, too,’” she says. “And that’s true. But sometimes, taking care of yourself is taking care of your person, because if someone else was doing it, that would be worse for me.”
A year ago, Jo began staying at McCormick for respite weekends once a month. Robin had resisted using the program for a long time, but with one of her Kap girls planning a wedding in Toronto, she agreed to try a two-night stay last summer. It was enormously stressful and strange to have someone else looking after Jo, particularly at night, but she forced herself not to check in, knowing they would call if there was a problem.
Jo had a great time, and now the experience of having him away for these short, regular intervals is an exercise in anxiety and relief that tug at each other in conflicting ways. By the second day Jo is gone each time, Robin can feel herself relax to such a profound degree that it’s almost a physical sensation. But she also notices a distinct calm return to her the moment he comes back home. “The term ‘wife’ is frustrating sometimes because we haven’t had a marriage in many, many, many years,” she says. “But it is still a weird mental thing to pack your husband up and send him away. It’s a very unnatural feeling.”
And while it’s impossible to ever forget about Jo’s illness, the daily blur of caring for him provides some protection against the worst places Robin’s mind might go. Without those hour-by-hour distractions, the black, hulking silhouette cannot be ignored. “When he’s not here, it’s almost more apparent how much Alzheimer’s takes up of our life,” she says. “When he’s here, we’re just doing the things that we do for him. You sort of don’t realize how much it consumes you until you don’t have to do it, even if it’s only for a couple of days.”
And when they’re home together, there are good moments — lots of them — tucked into the smallest, most ordinary pockets of the day. Before Jo was sick, he and Robin spent a lot of time hanging out on the couch together, and they still do that now. And even though it’s very different, it’s happy and peaceful. “We still laugh every day,” Robin says.
Then she pauses for moment. “The more I think about it now, I don’t think I’m going to be able to put him somewhere anytime soon,” she says. “I just don’t think I can.”
A short while later, Robin and her tight knot of close friends from work are gathered at one of their houses, and they’re talking her gently through how it might all be okay when Jo moves into a nursing home. “I can’t picture him being okay with it,” Robin says, scrubbing her eyes with the heels of her hands. “It’s a very intimate thing to take care of somebody, and I don’t want a stranger doing it. It doesn’t feel like the right choice.”
She runs through the options that might help preserve her and Jo’s world at home a bit longer: she can take a part-time stress leave at work, Jo can keep going to the day program, her dad will be back soon. “You’re never going to be ready for that, but maybe you’re just really not ready for that now,” says Sandy Pool of moving Jo. “If your gut is telling you he’s not ready for that now, maybe you need to listen to your instincts.”
These friends — Sandy, Sue Silcox and Danielle Sauvé — long ago stopped feeling like they could do much for Jo directly. So they’ve built a protective cocoon around Robin, warning well-meaning people at school not to ask about Jo at work, and mostly they think of their mission now as providing a normal-ish life, with dinners out, weekends away planned around Jo’s respite stays and a lot of cursing and shrieks of laughter.
Danielle and her husband, Steve Nazarian, started a GoFundMe account to help cover Jo’s long-term care, and it has raised about $23,000 to date. Robin was profoundly uncomfortable with the idea at first, but tried to think of it in terms of Jo’s needs and not her own pride. Jo receives long-term disability support, and he would qualify for a subsidy to cover the cost of a “basic” room, which means a ward with multiple beds in it, but Robin can’t bring herself to place him in that type of accommodation. A semi-private room in Komoka runs about $2,500 a month. “There’s nothing to say and there’s nothing to ﬁx, and this is the only real issue [where] I think we could at least be involved in helping,” says Danielle.
Taryn has already decided that when the time comes for Jo to go into long-term care, she will swoop in to handle the logistics of the move, which she feels will just be too much for Robin. But beyond that, Taryn has no idea what it will look like or how to help Robin through it other than to just keep showing up, so she figures she will make herself a forcible house guest for a while then, so Robin is not alone.
She’s watched her sister do everything from helping Jo shower to feeding him, totally unfazed by it all, like it’s just life. What Taryn doesn’t understand is how she’s managed to do it without falling apart. “I tell her, ‘He wouldn’t want you not being able to care for him, hurting yourself, struggling. He wouldn’t want that,’” she says. “I’ve told her that, but you can’t make that guilt go away, right?”
Robin reads Anthony Bourdain’s Kitchen Confidential to Jo before bed. They’ve read it before, but Robin says Jo finds comfort in familiar things. (Photo, Chris Donovan)
One day, about a month before school would restart and Kip would move back to London, Jo has returned from the day program, and he and Robin and Taryn sit on the couch watching TV together. Taryn is openly concerned that Robin is thinking of delaying Jo’s move to a nursing home. She says she wanted to check with Robin before mentioning the issue to Kip, so he didn’t launch into dad-mode to try to solve every possible wrinkle immediately. Jo turns to Taryn and offered a cheerfully incredulous, “F–k!” She laughs and agrees with him.
What it feels like to live with undiagnosed autism
“How about some chips for an hors d’oeuvre?” Robin asks Jo. She sits next to him and offers them one at a time, and he wolfs them down with obvious enjoyment. Then Robin reheats some pasta, drapes a tea towel over Jo’s chest and feeds him, seamlessly weaving the spoon around his undulating arm movements.
They would hang out like this — like always — for a few more hours, and then she would get Jo changed and give him his medication before helping him into bed. More than a year ago, Robin realized that Jo was struggling with books and reading the same page again and again. So without ever bringing it up, she started reading to him. Last summer they re-read the Harry Potter series, and since then, they’ve done Bruce Springsteen’s autobiography and Anthony Bourdain’s Kitchen Confidential. They just started For Whom the Bell Tolls.
Jo is often asleep by the time Robin finishes reading, and then she stays up on her own for a while. The emotions she’s boxed up during the day — the ones she doesn’t let Jo see because he absorbs them all — spill out then.
The last time Robin completed the Zarit Burden test about caring for Jo, most of her answers fell somewhere in the middle of the scale, but she answered some questions at the extremes. In response to the item, “Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?” Robin checked off, “Nearly always.” And to, “Are you afraid of what the future holds for your relative?” and “Do you feel your relative is always dependent on you?” she answered the same.
Then there were these questions:
“Do you feel embarrassed over your relative’s behaviour?”
“Do you feel uncomfortable about having friends over because of your relative’s behaviour?”
And: “Do you wish you could leave the care of your relative to someone else?”
Never, Robin answered. Never. Never.
In mid-August, Robin got a call from the nursing home in Komoka, offering Jo a bed. She turned it down.