Gary Quinton keeps a small leather-bound pocketbook on him at all times. It’s filled with handwritten notes and reminders splashed with yellow highlighter.
"On a good day, that’s the first thing he looks at," says Judy, his wife of 53 years. "He works hard at being organized. And then I’m there to help remind him."
Gary has Alzheimer’s disease. He was diagnosed eight years ago after family noticed he was getting distracted while driving and having trouble completing errands.
For Judy, it was a relief to have an explanation for the cognitive lapses. For Gary, the Alzheimer’s diagnosis was just another fact of life.
"It’s sort of like getting wrinkles or going bald, you know, it’s not something that we’ve chosen to do, it’s happened to us," he says. "And I just thought, ‘Well, you know, I’m just going to be me carrying on, doing what I can do, and enjoying life as much as I can.’"
Gary’s version of "carrying on" is something to aspire to.
Physical activity, particularly cycling, has always been an important part of his life and a way to cope with difficult emotions. At 79 years old, his daily exercise routine includes an hour-long walk with his dog, Piper, a well-behaved mini Goldendoodle, at the crack of dawn, followed by a post-breakfast walk with Judy and a round of 60 push-ups and sit-ups and 20 chin-ups.
"It used to be 100," he says with a chuckle.
During the winter, snow barely has a chance to finish falling before Gary is outside with a shovel clearing the sidewalks up and down his Riverview street. Cycling — something he fell in love with as a kid in Vancouver — has become an all-season affair thanks to studded tires.
January is Alzheimer’s Awareness Month and Gary is one of four individuals featured in this year’s Alzheimer Society of Manitoba campaign, the goal of which is to challenge misconceptions and share lived experiences about the disease. Other stories come from caregivers, children and spouses of those with Alzheimer’s and dementia; the latter being an umbrella term for memory loss conditions under which Alzheimer’s falls.
"There’s lots of myths out there about dementia that as soon as you have a diagnosis, your life is over. That people with dementia can’t contribute," says Wendy Schettler, chief executive officer of the Alzheimer Society of Manitoba. "But in fact, that’s just not true."
Gary spent his working years teaching English at Gordon Bell High School and wants to educate others about the disease. One of the first things he did post-diagnosis — after giving up driving — was tell everyone in his social circle that he had dementia.
"I would forget people’s names and so I didn’t want people to think that I was snubbing them or that I didn’t care about them," he says. "Some people sort of shied away from me after that and that was perfectly reasonable, I could understand why they might feel that way; I wasn’t the person they used to know."
That reaction isn’t uncommon. While news of a dementia diagnosis can cause friends and family to rally around an individual, Schettler says stigma surrounding the disease can also lead to a loss of social support.
"They were no longer part of the conversation, people didn’t ask them questions or ask them advice anymore," she says of some client experiences. "It’s also very difficult for their family or care partners, who require that support around them and really need to be part of the world."
Dementia is a degenerative disease that over time can lead to personality changes and a loss of cognition, language, short-term memory and executive functioning, like the ability to plan and work towards goals.
Winnipeg geriatric psychiatrist Dr. Barry Campbell says that while dementia is among the worst, all-encompassing afflictions out there, diagnosis doesn’t have to signal the end of days.
"I wouldn’t want to minimize how terrible a thing it is," he says. "But having said that... there’s living with dementia and there’s living well with dementia and one of the things that allows a person to live well, probably most importantly, is a supportive spouse."
Even those with mild symptoms can’t live independently, which places the burden of care on close family members. Because of this, caregivers experience higher rates of mental health issues and depression.
"It’s not an easy thing to do," Campbell says.
Gary’s decline over the last eight years has been slow — something that can be attributed to his regular physical activity and mental stimulation (he is a voracious reader and holds court over the diversions page of the newspaper). Judy says her husband’s short-term memory is getting shorter, items are getting misplaced more often and tasks requiring any kind of planning need to be done together. Teamwork, routine and a shared sense of humour have made life not only manageable, but enjoyable.
"He’s the brawn and I’m the brain," says Judy, a self-describer planner. "Midway through, I sort of thought, ‘How am I going to cope? How am I going to manage what’s going to happen? How should I be prepared?’ All these things that I couldn’t answer because everyone’s trajectory is different.
"The best thing was that I realized (I had to) enjoy today because I can’t say in a year’s time what’s gonna happen."
Both have benefitted from programs at the Alzheimer Society. Gary has been meeting with the same support group, which staff have dubbed "The Laughing Group," weekly for eight years. The meetings are virtual and less often these days, but he’s glad to be able to connect with his community, one way or another.
"He’s sometimes puzzled… but when we get the iPad and as the people pop up on the screen his face just beams," Judy says.
"I love Thursday mornings," Gary adds.
For many people with dementia and their caregivers, the coronavirus pandemic has upended familiar routines and cut them off from social circles they relied on for support and stimulation. Those living in long-term care facilities — which is roughly one third of the 23,000 Manitobans with dementia — have suffered disproportionately from staffing and resource issues during the pandemic.
Schettler has a 97-year-old friend living in a care home and has watched her become more frail over the last nine months of isolation.
"We’ve tried to visit over FaceTime, but it’s very hit and miss," she says. "She is deeply, deeply sad and she knows that she has very limited time left and can’t fully understand why I’m not coming into her room to visit her, why I’m not there for her. And it’s heartbreaking."
While the effects of the pandemic on those with dementia haven’t been carefully studied, Dr. Campbell says the prognosis isn’t good.
"So many families say they’ve really noticed a decline in the person," he says. "I think it really underlines the fact that in places like long-term care, staff are tremendously overworked and without the contributions of the informal supports that families give, the resources are really woefully inadequate."
Once a decline happens it’s rare for a person with dementia to return to a previous level of functioning. Right now, protecting those who are most at risk of contracting the virus comes at a significant cost.
"It’s a tough one," Campbell says. "While isolating people stops them from dying, not driving a car stops you from dying as well. But there’s benefits to driving and some risk in life is appropriate, if it maintains your quality of life."
Eva Wasney is a reporter for the Winnipeg Free Press.