Generations apart, Dag Furst and Bridgette Burton are connected by Alzheimer’s. Both are primary caregivers for their loved ones.
Furst didn’t think much of it at first.
His wife Barbara was shopping at Capilano Mall and called her husband in a confused state because she couldn’t find the car. Furst came to his wife’s aid, then left her to do some more shopping.
Then Barbara called again, half an hour later.
“I don’t remember where I put the car.”
That’s when Furst says he became nervous.
What followed for his wife of 50 years, was a standardized cognitive test delivered by her doctor.
“What day is it?” “Spell World backwards.” “Draw the hands on a clock to read 3:15.”
She didn’t do too well, says Furst softly.
Barbara was referred to the Alzheimer’s clinic at UBC where a diagnosis was confirmed. She was still on the south side of 70.
Furst is slowly losing the smart, beautiful woman with a wacky sense of humour he fell in love with on a Toronto University campus in the 1960s.
At first, the couple waded through the unpredictable waters of Alzheimer’s as a united front.
“She wanted friends to know that she was diagnosed, which also made it a lot easier for me as well. We didn’t have to go around and pretend and fake it,” recalls Furst.
Then things started to get bad, according to Furst.
There was a stage where Barbara was accusing her husband of all kinds of things, while in a delusional state and often in the middle of the night.
“She was determined that I was having affairs with just about everybody,” says Furst. “She had a story of me coming home stone-drunk and basically attacking her. She was literally shaking looking at me.”
Barbara would escape their home, one time climbing out the second-storey window, believing she was not safe there. On three or four occasions she was found wandering the streets near Lonsdale.
“So I think a big part of her disease is feeling trapped,” explains Furst. “Now I am her prison guard.”
Once a voracious reader and witty conversationalist, Barbara is no longer engaged in life. The couple has been resigned to watching two or three hours of news at night, “because we’ve got to do something together.”
The Fursts have been robbed of their retirement years and enjoying their vacation home in Sechelt, as Barbara deteriorates and Dag is left helpless – lost in the unpredictable storm that is Alzheimer’s.
His saving grace is the support Furst receives from private caregivers, along with guidance from a couple of education co-ordinators at the local branch of the Alzheimer Society of B.C., in Lynn Valley.
In addition to offering Furst a course in caregiving, the Alzheimer’s co-ordinators on the North Shore introduced him to another gentleman going through a similar journey. It turned out to be a re-introduction.
Furst had hired this gentleman in the early 1980s to work at a global professional services firm, when the worries in their lives seemed minuscule compared to what was coming for them in retirement.
The two took different paths and lost contact until recently, reconnected in North Van by their wives’ respective battle with Alzheimer’s. They get together for lunch or coffee, and compare notes.
More importantly, it’s a cathartic release for both caregivers.
“When I hired him I was concerned he was a little too detail-oriented,” says Furst with a smile.
It turned out to be the best asset Furst could have hoped for. His friend had investigated all the different organizations that provide care and had made copious notes that proved invaluable.
Furst feels there could be a lot more publicly-funded assistance offered to caregivers.
“We are approaching a social disaster,” he says.
Caregiver burnout is an epidemic that Furst is acutely aware of. In moments of respite, he plays squash with his friends or heads to the mountains for skiing.
But at the same time, Furst feels guilty.
He says he’s struggling with his wife going to a care home. But that’s when he can be Barbara's spouse again, and not the warden.
“It feels like a waterboarding type of torture. Some days I’m fine, and other days I think if I take one more drop I am going to go nuts. But also feeling, this is my responsibility."
While dealing with forces of Alzheimer’s and depression wreaking havoc on her brain, Barbara suffered a cardiac arrest and had a battle with breast cancer that resulted in a full mastectomy.
“So she’s had a really, really tough time,” says Furst.
“The thing that’s hardest about this is the recognition that there’s so little that you can do. You look ahead to what the solutions are and there’s no good solution,” alluding to fact there’s no cure for Alzheimer’s at the moment.
Furst is encouraged by the fact that frontline municipal staff on the North Shore are currently being educated about dementia, to spot the signs and suggest feedback on how to support those living with the disease in the community.
The three municipal councils have approved the Dementia-Friendly North Shore Action Plan.
With funding acquired through the Union of B.C. Municipalities’ age-friendly communities grant program, the local municipalities have partnered with the Alzheimer Society of B.C. to roll out a dementia friendly training program for frontline municipal staff, who will in turn train co-workers and volunteers in their workplace.
The municipalities have have also undertaken an awareness campaign that involves sharing facts about dementia on social media, as well as displaying window stickers in civic facilities across the North Shore.
One time when Barbara took off, she walked in a disoriented state from the Lonsdale area to Lillooet Road near Capilano University, crossing busy lanes of traffic.
Fortunately, a bus driver spotted Barbara and came to her aid.
“That’s certainly a sign of a dementia friendly community. That really impressed me,” says Furst.
At 35 years old, Bridgette Burton didn’t expect her mom, Julie, would start to forget.
The disturbing signs crept up slowly. Previously an introverted person, Julie’s personality started changing around the age of 70.
“She was a lot more open to trying things,” says Burton.
That turned out to be a bad thing in Julie’s case because she signed up for a bank account while in the early stages of dementia.
When Burton reviewed the paperwork, she saw her mom had been unwittingly signed up for a product through the bank. Julie had no recollection of going to the bank – even the day after.
In advocating for Julie, Burton is now embroiled in a dispute with the bank – on top of managing her single mom’s day-to-day affairs, and coming to terms with the inevitable greater loss ahead.
Burton is struggling to keep her head above water, while trying to run her own business in tandem with managing her mom’s complicated health issues.
“I definitely don’t take the time to … mourn mine and my mother’s relationship,” she says.
There is no more rapport between the loved ones. All the conversations are light and breezy, about the weather and Burton’s dog.
Eight million informal caregivers, including adult children, provide 75 percent of dementia care in Canada, according to stats from the Alzheimer Society of Canada.
Burton attends a monthly adult child support group at the Lynn Valley Alzheimer’s office which she says is helpful.
The outdoor enthusiast also goes skiing, snowmobiling or mountain biking when she has a spare moment.
Most importantly, she makes sure she hits the gym every morning at 5:30 – to keep a routine for herself.
Burton has also put in place some safeguards to protect her mental health, including daily meditation and learning how to process emotions as they come instead of burying them deep inside.
“I just need to be double strong for her,” says Burton.