Learning to forget: From Alzheimer's to acceptance
Credit to Author: Denise Ryan| Date: Sun, 27 Oct 2019 13:00:28 +0000
When Tony Wanless walks into the Hampton Inn & Suites hotel in Vancouver, he gets to forget that he has Alzheimer’s and remember who he really is: a gregarious, self-deprecating, engaged human being with an appetite for conversation, an aptitude for quips and an independent streak.
Wanless is here as a member of Paul’s Club, a social group for people with young-onset Alzheimers. Paul’s Club meets at the hotel Tuesday, Wednesday and Thursday for social activities, for lunch and for forgetting.
For Paul’s Club members, forgetting is an accident, but for founder Nita Levy, forgetting is a gift she gives. “They leave their diagnosis at the door,” says Levy.
Most club members arrive on a HandyDart bus. Wanless, a former Province columnist, prefers a taxi. He’s not quite ready for the HandyDart, but he doesn’t like taking the SkyTrain during rush hour.
“It’s too confusing,” he explains.
Wanless pulls out the dog tags he wears around his neck. The tags are stamped with his name, a contact number and the word he hoped he’d never hear: Alzheimer’s.
“It’s embarrassing, but I need it. Sometimes I’m just mystified as to what I’m doing,” he explains.
Wanless laughs a lot about his predicament — the way his brain “short-circuits.” Like the wires don’t connect. He estimates the short circuits happen about four times a day.
“It’s unpredictable, that’s the problem,” explains Wanless. “You don’t know when it’s going to cut out.”
He might find himself standing in front of a door, holding a key in his hand and wondering what the heck it’s for. If he takes his time, he can figure things out.
Wanless tries to be patient with himself — something that doesn’t come naturally. “I have to be very, very … ”
He searches for the word, but nothing comes. He smiles and shrugs it off.
Words were Wanless’s stock in trade — they made him money, built his reputation and provided for his family.
They are still his refuge. “I love to read,” says Wanless. Then he cracks: “I just can’t remember what I read.”
Wanless, 70, along with his wife, author June Hutton, has just finished writing a memoir entitled Four Umbrellas about dealing with his dementia. The project was conceived during a walk on the beach in 2017, shortly before Wanless was diagnosed with Alzheimer’s, but after his cognitive impairment was becoming clear.
“We wanted this to be from Tony’s perspective, while he still had insight into the experience,” says Hutton.
Going public is the last thing most dementia patients want to do.
According to Krista Frazee of the Alzheimer Society of B.C., fear of the disease can lead to isolation.
“There is a lot of stigma and misunderstanding around all dementias, and it’s alarming for people who don’t know a lot about the disease to understand that people as young as in their 50s are being diagnosed,” said Frazee.
Tony Wanless with June Hutton at their home in Vancouver, BC, October 22, 2019.
Wanless is among approximately three per cent of Canadians who have “young onset” Alzheimer’s.
The term applies to those who receive a diagnosis of Alzheimer’s or dementia when they are younger than 65. Like many with young-onset, Wanless was diagnosed after the age of 65, but the diagnosis was retroactive.
Dr. Robin Hsiung, associate professor in the division of neurology at UBC, said the majority of patients diagnosed with young-onset have a clear family history of the disease affecting multiple generations, and a genetic component.
According to the Alzheimer’s Association of Canada, 564,000 Canadians are living with some form of dementia. Seventy thousand of those live in B.C., and about 5,000 of those are under the age of 65.
Those with young-onset face unique challenges, said Frazee: “They may be the breadwinners in their families, have young children or teenagers at home, and they may have difficulty finding age-appropriate care programs.”
Levy and her husband Michael hoped to address these special needs with Paul’s Club.
“This diagnosis is really, really emotionally devastating for the individual and their families,” said Levy.
Levy said they chose to hold the program at the hotel in part to get away from a medical or clinical setting. Their youngest member is 46.
“There were excellent adult day programs in Vancouver for older patients, but none were for someone who is physically active and fit,” said Levy.
The goals of Paul’s Club, said Levy, are to help members remain socially active, engaged and stimulated.
“A lot of our members couldn’t tell you what they’ve done at the end of the day, a walk, ice cream, lunch at an Italian restaurant or yoga, but they go home happy, in a positive state and energized,” said Levy.
Because the club runs from 10 a.m. to 4 p.m., it provides important respite for caregivers like Hutton.
Tony Wanless lives with June Hutton at their home in Vancouver, BC, October 22, 2019.
Research published in the journal Lancet Neurology shows that among young-onset Alzheimer’s patients who carry at least one of the genetic markers, the brain plaques that are a hallmark of Alzheimer’s appear up to 15 years before memory problems become evident.
Hutton says the couple can now look back nearly 20 years and see changes in Wanless’s behaviour that may have been early signals that his brain was changing.
In 2002, when Wanless was 52, he made a sudden decision to leave his job as a reporter. He also lost interest in his other passion: gardening.
Wanless, who worked at the Province for 22 years, where he wrote a popular column called The Cheap Guy, kept busy after early retirement.
He worked as a ghost writer, and wrote for B.C. Business and the Financial Post. But by 2007 he was having difficulties completing assignments. “I lost a couple of jobs. Something going on. A little confusion.”
He thought it was stress. “After it happens a few times you realize, maybe it’s me.”
During a 2011 during a trip to China, Hutton noticed her husband wasn’t enjoying himself the way he usually did on a holiday. Back in Vancouver, while Hutton was out one evening, Wanless fell in the kitchen, and took himself to emergency. Later, he couldn’t remember what the doctors had told him.
“I sent him to the doctor about his memory. He came back and said everything was fine,” said Hutton.
It was the beginning of an agonizingly slow diagnostic journey.
Over the next year, the forgetfulness continued, so Hutton sent him back to their family doctor who referred Wanless to a gerontologist.
The waiting period to see the specialist was a year.
The gerontologist gave Wanless a screening test called the Montreal cognitive assessment. It tests executive function, short-term memory, language and visual/spatial abilities.
Scores range between zero and 30, and anything over 26 is considered normal. Wanless was on the low side of normal.
Wanless credits his interviewing skills and verbal acuity for his ability to game the test. “I present well if I have to. They give you this rinky-dink test, you do it a few times and you can do it very well,” he says.
Once again they were told to come back in a year.
Internally, though, Wanless was “beginning to panic.” He began to obsessively research cognitive impairment, convinced he could repair his brain.
“I exercised, changed my diet completely, quit smoking,” said Wanless.
In 2015, Wanless took the test again. His score had dropped significantly.
The physician diagnosed Wanless with mild cognitive impairment and prescribed Aricept — a medication used to treat Alzheimer’s symptoms — but didn’t mention Alzheimer’s.
“It’s a helluva thing to say to someone,” says Hutton.
Shortly afterward, the couple decided to write about the experience. Hutton wanted Tony’s words on the page.
“I had read dementia memoirs, including one written by Iris Murdoch’s husband, but they usually focused on the caregivers,” says Hutton. “I wondered what Iris was thinking the whole time.”
“The problem is she wasn’t thinking anything,” quips Tony.
Hutton smiles. “Perhaps she was. You are a perfect example of someone who continues to write despite this impairment,” she says.
Wanless nods.
Hutton doesn’t speak for him, but gently prompts Wanless when he trails off, nudges him with a bit of humour or reminds him of the next turn in a story.
She tries not to get emotional, but her voice betrays her. “We are best friends,” she says. “It’s hard.”
A passage from Four Umbrellas in Wanless’s words, written in 2017, describes the fear Wanless experienced over the possibility he had Alzheimer’s, a terminal illness with distressing symptoms and no known cure.
“It was like being told in the 17th century that you had indications of leprosy. Your initial thoughts are well that’s it, I am going to go through a long horrible period of degradation and will turn into some kind of subhuman, pitiful, creature who is just begging to die but no one will accommodate him.
“Probably like a cancer diagnosis once was. ‘Prepare to die’ and that sort of thing, which was common before they had treatments that actually worked.”
Tony Wanless with June Hutton at their home in Vancouver, BC, October 22, 2019.
Aricept helped. “It was like an energy boost,” says Wanless.
The couple pushed for an MRI but were denied on the grounds that an MRI wasn’t medically necessary.
But for them, it was emotionally and psychologically necessary.
“Tony needed to see what was happening in his brain,” says Hutton. “My argument was that it’s our right to know.”
In 2017, the couple was referred to the UBC Centre for Brain Health and Wanless finally got the MRI that showed atrophy in the temporal lobes of the brain, a hallmark of Alzheimer’s.
“It was incredible relief,” says Hutton. “Now we knew what we were dealing with.”
The diagnosis meant the couple could plug in to the available support systems and it made them eligible for the disability tax credit.
Hsiung said early diagnosis is also critical for researchers. The majority of research on Alzheimer’s has focused on the formation of amyloid plaques in the brain.
“It seemed to make sense that if we can reduce the amyloid plaques, we can reduce the progression of the disease, but the other school of thought is because we are looking at patients that are already symptomatic, that have significant impairment, perhaps that is too late,” said Hsiung.
Wanless has participated in two clinical studies, and volunteered to donate his brain for research after his death. He wants to do his part to help others.
“It’s one of the first things in my life I couldn’t do anything about, but I couldn’t ignore it either.”
There is no such thing as a physiotherapist for the dementia-affected brain. “I have to go over and over something some other dude would get in two seconds,” says Wanless.
He points to an orchid on a table in the lobby. “I know that’s a flower and if I looked at it long enough I could remember what kind it is. It just takes a while.”
To work on the book, the couple shared stories through email, with Tony riffing on his illness, and Hutton blending her research into a narrative. The title, Four Umbrellas, came from one of Wanless’s brain short circuits. The couple had to leave their apartment while the roof was being replaced on their building. When they checked into the Sylvia Hotel, they discovered Wanless had packed four umbrellas, one in every compartment of his suitcase.
Hutton said she is hoping the book, which is in search of a publisher, will provide a map to others facing Alzheimer’s, draw attention to the importance of early diagnosis and highlight the experience of someone going through the process.
Wanless wants people to know that Alzheimer’s isn’t a “scorched earth kind of thing. It’s not like everything is gone at once. It’s bits and pieces.”
How does he cope with a diagnosis that tells him he will lose his memory, his ability to care for himself and, within eight to 10 years, his life?
“I try not to think about it,” says Wanless in his typically wry tone.
Wanless is learning to live in an eternal present — and how to accept not knowing what the key in his hand is for, or what is behind the door he stands before. “I’m a lot happier now. One of the good things is not having all the pressures. All of a sudden you’re free.”