'It’s so hard to believe because she’s so young'
Pam Byrne is quick to say hi and extend her hand to greet you at her and her husband’s garden store in downtown St. John’s.
“She’s as happy as a lark and always smiling,” her husband, Peter Byrne, said during a private interview earlier in the day.
“You’d never say there was anything wrong, looking at her.”
Pam may not appear sick, but her brain function is slowly deteriorating. She can’t remember how to wash her hair, tie her shoes or even get in a car.
Pam has early-onset Alzheimer’s disease, an uncommon form of dementia that strikes people under the age of 65.
She was 48 when she first got the diagnosis four years ago — “the worst day of our lives,” Peter said — and has since gradually and progressively seen her cognitive abilities diminish to point that she needs 24/7 supervision and care.
“People hear (she has) Alzheimer’s and they’re dumbfounded. ‘What? That’s impossible! Only 80-year-olds get that!’” Byrne said.
“It’s so hard to believe because she’s so young and she's such a vibrant, smart, intelligent, good-looking woman.”
It was her good looks that first attracted Peter in the mid-1980s.
“I’ll never forget those, skin-tight Levis 501s,” he said, laughing.
The teenagers first locked eyes on an airplane while flying back to Newfoundland from Toronto. Peter had been visiting with family. Pam had stopped over on her way back from visiting relatives in California.
The high schoolers, both in Grade 12, sat next to each other on the flight. She was in the middle seat. Peter was by the window.
“We started talking and we just clicked. I like to tell the story, she chased me for six months after, but really it was me chasing her…,” he said, with a chuckle.
“It was the beginning of a long, wonderful relationship.”
The two were together 11 years when they tied the knot on Aug. 2, 1996. Two children followed — Lauren, now 19, and Steven, 17.
“She was always a great mother,” Byrne said. “She loved family time.”
Pam was also an academic. After earning her education degree at Memorial University, she was among a chosen group to study for six months at Harlow, England.
She went on to become a substitute teacher until she began working as a full-time elementary teacher a few years later, first at St. Thomas Villanova in Manuels, then Beachy Cove Elementary in Portugal Cove-St. Philip’s and finally, St. Francis of Assisi in Outer Cove, where she ended her career three years ago.
Pam also earned her Special Education degree and was working on earning her Master’s degree through correspondence from Mount Allison University.
It was during that time — in November 2015 while he was away in Toronto on business as a Prestige Cosmetics distributor — that Peter got the first real indication that something was different about his wife.
“She called me and said, ‘I quit,’” said Peter, who was shocked, as she had been getting straight A’s in her Master’s program and was only one course away from completion.
“She was really upset. She said, “I can’t do it. I don’t know what’s going on with me. I just can’t do it.’
“And just like that, she quit.”
Pam explained that she was having trouble focusing, concentrating and remembering anything.
“It’s so hard to believe because she’s so young and she's such a vibrant, smart, intelligent, good-looking woman.” — Peter Byrne
When Peter arrived home, he made a point to watch her carefully.
He had noticed small things throughout that year — she was becoming forgetful and was repeating herself a lot — but chalked it up to a busy schedule with work, school, kids and their purchase of the new downtown business.
“Life was going 90 miles an hour, non-stop,” said Peter, who bought the family business Gaze Seed Company on Harbour Drive. “I thought no more of it than that.”
Shortly after she quit her Master’s program, Peter asked Pam to count him out 20 packages of seeds.
“She couldn’t get to five,” he said. “When she’d get to four, she’d put them all together and start again.”
Then, around that time, their kids asked her to make them grilled-cheese sandwiches
“She couldn’t do it. She had made grilled-cheese sandwiches for the kids their whole lives, but she couldn’t do it,” Peter said.
“She put two slices of bread in the toaster and didn’t toast them, put cheese on them and put it on a plate. There was no butter, no grilling in the pan. There was nothing.”
When Peter would ask her about it, she would be reluctant to talk about it.
“In the beginning stages, she knew there was something going on, but couldn’t accept it,” he said. “She was very guarded.”
But when Pam was handed $380 by a cellphone company employee — with surveillance video confirming it — yet denied having received it, that’s when Peter sought medical help for his wife.
“I knew there was something seriously wrong,” she said.
A visit to their family doctor turned into six months of neurology appointments and tests, including spinal taps. At one point, doctors suspected Mad Cow Disease.
In June 2016, doctors finally made the determination that Pam had early Alzheimer’s disease.
“We just cried and cried,” Peter said, recalling the horrible day they got the news.
While medication helped for a short period of time, the effectiveness eventually diminished over time.
Peter broke down crying when asked about their kids, who had a difficult time dealing with the gradual change in their mother.
“I couldn’t tell them, unfortunately, that it was going to be OK because I knew it wasn’t,” Peter said. “It’s not like you’re diagnosed with a cancer, where there’s a treatment plan with the aim of getting better and hopefully get on the road to recovery.
“With Alzheimer’s, there’s no recovery.”
Over time, she forgot how to cook, wash and read.
“All the things she’d love to do as a mother, she couldn’t,” Peter said, breaking down crying.
He said he initially made the mistake of insisting their kids be involved in tending to their mother and rescheduling activities to do so.
“I realized that teenagers should never be their mother’s caregivers. I realized they need to be teenagers and live their lives,” he said, wiping tears. “I should never have put that pressure on them.”
But he’s grateful for the help he does get from family and friends as they face the journey together.
Three years after being diagnosed, Pam struggles to put a sentence together and repeats herself when she does. She can’t remember how to get in bed and needs direction with what utensil to use when eating. She could spend hours sweeping the floor at the store and gets anxious when she’s in unfamiliar places.
“When she disagrees with you or when she repeats herself over and over, but you just agree with what she’s saying,” he said.
“But it’s been tough.”
It’s a struggle more and more families are dealing with these days.
According to the Alzheimer’s Society of Canada, Alzheimer’s disease — named for Dr. Alois Alzheimer who first identified the disease in 1906 — is the most common form of dementia. More than half a million Canadians are living with dementia, with 25,000 new cases diagnosed every year. Between health care and out-of-pocket expenses for caregivers, it’s costing Canadians over $10 billion per year.
More than 9,000 people are living with Alzheimer’s disease in this province, Shirley Lucas, chief executive officer of the Newfoundland and Labrador chapter of the Alzheimer Society, said. While there are no statistics regarding early-onset, she added, it’s not as rare as people may think.
“It’s not just a seniors’ disease."— Shirley Lucas
“It’s not just a seniors’ disease,” she said.
The cause of the disease not fully understood and no one treatment can prevent it. However, Lucas said exercising the mind (doing word puzzles, for example) and body, eating a heart-healthy diet, reducing stress and staying socially active may help reduce the risk.
“People really should be looking at their brain health,” she said.
As for the warning signs, Lucas said it’s common for people to be forgetful, but there can be red flags indicating things are more serious.
“People often say, ‘Oh, I forgot to tell you,’” she said. “But if someone has no recollection that they forgot to tell you something, or if they tell you something repeatedly, this may be a signal that something is going on.”
If there’s a bright side in Pam’s case, since her disease is based in the frontal lobe of her brain, Peter said, she likely will always remember him and their children — unlike many living with Alzheimer’s who are gradually unable to recognize family members, to the devastation of their loved ones.
He also takes comfort in knowing she isn’t suffering. In fact, Pam has never looked happier.
There possibly will come a stage where anger and aggression will come, he said, but for now, Peter and his the family are cherishing every day with her.
“She’s still the kind-hearted, bubbly, happy woman she always was,” he said. “And to me, she’s as beautiful a person as she was the day I met her.”