There are days when Karen Best wanders around the Woodlands of Sunset home, clutching a pen.
While most of her memories have escaped her, she finds comfort in the familiar act of holding a pen in her hand, though she has no idea why.
It was not all that long ago that Best, soon to be 61, was an award-winning investigative reporter with the now-defunct Dunnville Chronicle newspaper.
Her dedication to her craft, strong work ethic and extensive, unbiased coverage of the infamous 2006 Caledonia land dispute and other area Indigenous issues, led to a prestigious job offer as communications officer with the Six Nations of the Grand River.
Sadly, her stint at that high-profile position led to her eventual termination in May, 2014.
It wasn’t known at the time that she was suffering from early onset Alzheimer’s Disease.
Once a master communicator, eager to tackle any subject in the interest of educating the public, Best became suddenly depressed and confused, isolating herself in her Caledonia home; rarely talking to anyone.
Looking back, the symptoms were there, her daughter, Cassandra Best, told ThoroldNews.
She liked to hoard things: particularly, piles and piles of newspapers, which surrounded her desk at the Chronicle office.
“She became like a recluse. She wore her housecoat,” not dressing for days. “She never did the typical repeating questions, like you hear with Alzheimer’s Disease. She just withdrew and started watching cat videos all day on YouTube. She would say things that didn’t make sense, so I said, ‘I have to take her to the doctor’.”
Reluctant at first, Karen agreed to go when her daughter said that she herself was experiencing anxiety and depression; a ruse that worked.
“She’s a very caring, loving mother so I knew she would come to help me.”
During the course of completing a series of cognitive tests, it quickly became apparent she had dementia when she couldn’t draw a simple clock on a piece of paper.
Diagnosed with the memory-robbing disease in the summer of 2015, Best’s condition has progressed more rapidly than that of her father, who was also diagnosed with dementia that same year.
Best is dealing with a double whammy, said her daughter—“Because she has the frontal temporal dementia as well as the early onset Alzheimer's. With early onset, it’s pretty typical that it progresses so quickly, which added to the cruelty.”
In Cassandra’s words, “It felt like it was a kick to the gut.”
Once health assessors determined that Karen couldn’t stay at home safely —even with her husband Bob’s help—she began attending adult day programs.
“It’s financially difficult to pay for all this,” said Cassandra. “She was too young to get Old Age Security, so we decided to put her in long-term care. She was deemed in crisis because she was wandering around Caledonia. At Woodlands of Sunset, she’s in a secure unit.”
She’s resided at the Welland home since November, 2016.
Because of her strong work ethic, “They told her she’s there to help others,” explained Cassandra. “So sometimes, she’ll say, ‘I have to get to work.’ When she carries a pen, she feels better. Reporting and writing was her life.”
Due to her compromised decision-making capabilities, and inability to take long walks by herself, she’s no longer physically fit, as she once was.
“She gained a lot of weight because she doesn’t know she shouldn’t eat a whole cake.”
At the outset, she suffered the common dementia symptom of paranoia, believing people were stealing her possessions.
“Now that’s gone, as she doesn’t remember the things she had to steal.”
However, when Cassandra brings her two boys—Malcolm, age five, and Liam, 21 months—to see their grandma, her instincts are still razor-sharp.
“When she sees the baby might roll off the bed,” her arm instantly flies to save him.
On a day-to-day basis, though, “It really impacts kids. My five-year-old is more advanced” (mentally than his grandmother).
She can’t comprehend enough to read but Karen still enjoys leafing through books with pictures, said Cassandra; “and she loves kids and animals.”
In Canada, 16,000 people have early onset Alzheimer’s Disease.
Cassandra’s 11-year career in ad sales at a radio station ended a few months ago, when she spotted an online ad for a manager of fund development for the Alzheimer Society Niagara Foundation.
“I just thought, I wonder if there’s something I can do to make more of a difference. I was very naïve, like many people, who thought it’s an old people’s disease.”
Now working at the St. Catharines office, Cassandra takes some comfort in seeing that so many other people share her situation.
“We see the clients come through the door and know the difference it makes for families,” she said. “I have the best motivator. She recognizes me but doesn’t refer to me by name. I don’t know if she knows I’m her daughter. ”
A former Thorold resident, Cassandra and her husband Taras and their children live in Vineland. Her sister Kathryn, 31, lives in Vancouver and brother Greg, 28, lives in Mississauga.
“I get help from a support group for dementia caregivers who are under 40 (online), from Chicago. I found out about it from (celebrity) Seth Rogen, whose mother-in-law also suffers from it.”
As part of Alzheimer’s Awareness Month this January, author Mike Barnes will present his book, Be With: Letters to the Caregiver at the Niagara Falls Library on Jan. 14 at 6 p.m.
In honour of her mother, Cassandra is taking part in A Walk for Alzheimer’s, which leaves from Brock University on Jan. 27 at 11 a.m. Participants can register online or in person at 9:30 a.m., when a Wellness Fair will be held in the Ian Beddis Gym. Free parking is offered in Lot D.
“The early stage programs are what the walk is funding,” said Cassandra, adding, “The walk is a therapeutic thing for families to do. There’s a sorority from Brock (University) doing it. I have a personal goal of getting more young people to care.”
The Niagara chapter served 77 clients and caregivers in Thorold alone in 2018.
The event will feature live music by Cory Cruise, a Babysitting Angels Kids’ Zone, appearances by Fluffy the Clown, and the 501st Legion Canadian Garrison as popular movie characters.
Several supportive programs are offered at the Alzheimer Society office at 403 Ontario Street on an ongoing basis, both for patients and their caregivers.
To sponsor Cassandra in her walk, visit her pledge page here.
More information is available here.
