By Robin Roberts
In the 2014 movie Still Alice, Julianne Moore plays a prominent linguistics professor diagnosed with early onset Alzheimer’s disease. After leaving her position at Columbia University and struggling with how to live with the disease, she gives a moving speech at a conference in which she explains what it’s like by saying, in part, “Our strange behaviour, our fumbled sentences changes others’ perceptions of who we are and our perception of ourselves. We’ve become ridiculous, comic. But this is not who we are. This is our disease.”
Somewhere in that strange behaviour and fumbled words, she is still herself. So are the 747,000 Canadians living with this progressive brain disease, echoed in the Alzheimer Society of Canada’s current campaign, Still Here.
“What people told us is that, as difficult as a diagnosis of dementia is, what can be even harder are the attitudes and the stigma that they bump up against when they tell people,” says the Society’s Education Director, Mary Schulz. “People still have the ability to contribute and still have a life to live even though they’re going to need increasing amounts of support as they go along. But when the dust settles, I am still here.”
And that’s what the following three people, all living with dementia, felt it most important for others to know through their inspiring stories: that they are still here.
Paul Lea was in his mid-forties when he started to notice he was having memory problems and confusion. Although the issues continued for five years, he paid little attention until one day, at work as a quality control auditor for Levi Strauss, he had finished measuring a shirt and couldn’t figure out how to put it back in the package. When he raised his concerns with his doctor, he told Paul it was nothing to worry about.
Six months later, he was standing in a Toronto bank when he felt a shooting pain behind his left eye. As he was driving home, he began to lose vision in that eye. The symptoms eventually faded, until a few months later, when they returned but much worse. He called an ambulance and, at the hospital, was told he’d had a massive stroke. He was just 50 years old and lucky to be alive.
But his memory lapses persisted, and five years later he was officially diagnosed with vascular dementia. Although keeping busy has helped him adjust, he has limitations. In addition to the major stroke, a series of small strokes cost him his peripheral vision in his left eye, so he no longer drives. “I would if I could just do a series of left-hand turns,” jokes Paul, now 63. His daughter “daddy-proofed” his apartment, where he lives alone, so he doesn’t bump into furniture as much as he once did.
He used to love to cook, but he now has trouble following recipes. He was also burning through a few pots, so he colour-coded his stove’s switches: red means they’re on, green they’re off and safe to touch. He was once adept at the computer, but finds social media has gotten too complicated. So he fills his days playing brain games, watching movies, listening to music, walking up to 15 kilometers a day in warmer weather, and writing.
In 2012, Paul published a book, Live or Die: The Struggle to Survive by the People of Haiti, based on his 2003 trip to the impoverished country where he worked on behalf of orphan children. He’s now writing another, this one called The Event That Forever Changed My Life, chronicling his experiences with Alzheimer’s disease. “I never thought I’d be a writer,” he says, “but I also never thought I’d be in the situation I’m in now.”
Despite his diagnosis, his strokes, his diabetes and a mild case of chronic obstructive pulmonary disease, Paul Lea remains positive. “I’ve always been that way,” he says. “When my friends had problems, I’d tell them there’s always light at the end of the tunnel, no matter how miniscule it might be. It’s always there and it’s up to you to make it brighter.”
So many of those friends, however, don’t come around much anymore. “It’s almost like they think this disease is contagious. They don’t have the patience. I wish people understood that we’re basically the same as they are except we have issues or problems. It’s not something we brought on ourselves, it’s just a cruel twist of fate. We do feel hurt by being ignored and sometimes just talking about what’s wrong with us is helpful.”
To others who have been diagnosed, he advises the same. “Talk about it, whether with friends or professionals. And focus on the things you can do. Find something, a hobby, you can do and do it well. If not, don’t give up. Life is short and if you’ve got a hiccup in your road, just burp and get on with it.”
Bea Kraayenhof was working as a nurse in southwestern Ontario when she was involved in a serious car accident on the way to her night shift. She attempted CPR on the driver who caused the accident but was unsuccessful. While dealing with the insurance company, she was put through a series of programs and tests, which confirmed the memory problems she’d been having for the previous few years.
“When you’re younger and busy you think it’s because you have too much on your plate,” she says of the gaps in her cognition. Three particular incidents, however, caused her to take it seriously. As an avid greeting card maker, one day she’d gathered up all the cards she’d been working on but noticed one was missing. She looked everywhere for it, finally discovering it later that evening in the refrigerator. Another night she’d gotten into her car after being out with friends and noticed it was running, and had been for over four hours. “The blood drained from my face and I thought, ‘Oh my gosh,’” she recalls.
But the most alarming incident was the day she’d started down the stairs of her suburban home to fetch the mail. She felt a cold draft on her legs, looked down and realized she had forgotten to put her pants on. “That one really upset me. I thought, there is something wrong, this is not kosher.”
A visit with a specialist confirmed her diagnosis and, at 48, she was told to retire from nursing. “I think the worst part of being diagnosed was losing my car licence, my job, my mobility,” says Bea, now 62. “You lose everything at the same time. It becomes an emotional blitz. But you have to learn to get over it, and if you don’t it’s just way worse. I did not allow myself to be angry. It is what it is and I try and make the best of what I have left.”
What she has left is work with the Niagara chapter of the Ontario Dementia Advisory Group, where she’s a founding member, speaker and advocate for others with dementia. “I’ve been very blessed with being able to do as much as I can for the cause. I’m a great believer in [the adage]: if you don’t like something, don’t complain about it, change it.”
Although she finds using the transit system confusing, she prides herself on having “two feet and a heartbeat,” even if those two feet sometimes need the assistance of a walker because of arthritis. She also stays engaged through social media, thanks to a niece who helped her set up a Facebook page.
As for what she would advise others who have also been diagnosed, “I would just really encourage them to not let it hold them back. It’s been my experience that the more you come out with it, the more you yourself feel comfortable with it, the more others will be comfortable with it, the more you can go out and socialize and be a part of the community. This is not the end of the book, it’s just a new page in a new chapter.”
Jim Mann was working as director of government affairs for Canadian Airlines when one day, in early 2007, he became disoriented at an airport. “I couldn’t figure out what to do,” he recalls. Another day he left his Vancouver home for the library but quickly forgot where he was going. “I noticed the book in my hand, so I went to the library.”
As concerning as these episodes were, he says it wasn’t a big surprise when he was diagnosed later that same year. “My mother was living with dementia at the time I was diagnosed, and we were following her journey.”
Jim’s own journey, after retiring from the airline, continued with contract work and volunteering with the Alzheimer Society of Canada as well as the BC chapter, where he’s currently featured in a video on their website describing what it’s like living with the disease.
“It keeps me going, it gives me a purpose,” he says of his involvement. “And that’s part of the issue for people with dementia: they need a reason to get up in the morning, just like everybody else does. If they are discounted as an individual because of their diagnosis, then you’re going to take that purpose away from them.”
Jim says many people have misconceptions about those living with dementia, including how they can appear. “When you tell people you have Alzheimer’s, they’re surprised you’re able to have a conversation. I was 58 when I was diagnosed and people told me, ‘You’re too young, you cannot have Alzheimer’s.’ So you end up justifying your own diagnosis.”
Jim, now 66, says part of the reason people outside his family were also surprised he had the disease was that he didn’t talk about it. “I had not been very public with what I was going through. It’s not something you want to talk about early on, but finally it was more [pronounced]. I may repeat myself, I may ask the same question more than once, but so what?”
When he eventually did open up to others, some, unfortunately, didn’t react so well. “You don’t communicate with some friends as often; some you don’t see anymore. Relationships change.”
What he would like them to know is that most people with dementia don’t change. “They are the same person from the day before to the day after; they don’t suddenly change. There are many stages, usually, between the diagnosis and end of life. People need to understand that there is a life after diagnosis.”
For others living with the disease, his advice is simple. “If you want to stay active, stay active. If you want to volunteer, go for it. If you can’t drive anymore, take a bus. If you’ve never taken a bus, there are people who will help you. Life can continue. Life does continue.”
Although there is no cure for dementia, research around the world is ongoing. Meantime, the Alzheimer Society of Canada and its provincial chapters offer extensive information and support for those living with the disease, as well as for their family, friends, colleagues, neighbours — anyone who wants to better understand what it’s like.