ST. JOHN'S, N.L. — Peter Byrne greets customers with a smile and soon after erupts into laughter during a chat with one of them at the checkout.
It’s a busy fall day at his St. John’s gardening store, Gaze Seed Company on Harbour Drive, where the shelves are chock full of spring bulbs, vegetable seeds, plants, containers and other gardening supplies and accessories.
“It’s been crazy busy here,” Byrne said, looking around the store. “There’s been a lot of people in the last few months, for sure.”
But there’s one person, in particular, who’s missing — his wife, Pam.
The 53-year-old has early-onset Alzheimer’s disease, an uncommon form of dementia that strikes people under the age of 65. Since she received the diagnosis at age 48, Pam — who had worked as an elementary teacher while working on her master’s degree — has gradually and progressively experienced diminished cognitive abilities to the point that she needs 24/7 supervision and care.
Early last year, she was able to function somewhat independently and was at the store almost every day with her husband, keeping him company and doing whatever she could to stay occupied.
“There’s a big difference in her now, especially in the last six months. Before this, we were still able to do things and kept going. Now, it’s to the point where it’s starting to interrupt our lives.” — Peter Byrne
Things have changed dramatically since The Telegram last visited the couple in August 2019, when she was quick to give a friendly greeting.
“There’s a big difference in her now, especially in the last six months,” Byrne said. “Before this, we were still able to do things and kept going. Now, it’s to the point where it’s starting to interrupt our lives.”
The biggest change has been in her difficulty communicating.
“She’s always got lots to say, but struggles to say it,” Byrne said. “She’ll get two words out and then the hand actions will start. She’ll get really frustrated if I don’t understand what she’s trying to tell me.”
He said Pam has lost up to 20 pounds this past year — a noticeable change on an already small-framed body. She also tires easily, affected by what doctors told Byrne was “sundown syndrome,” a condition in which dementia patients experience confusion and extreme fatigue when the sun sets.
“By 7 o’clock, she’s ready for bed, no matter what,” Byrne said. “Before, we used to be able to have a nap if we were going out to dinner with close friends and I’d get until 10 p.m. with her. But there’s no more of that, which is sad because you feed off the people around you. It’s been a major factor in our lives.”
Pam also frequently wanders, meaning Byrne has had to put chimes on the front and back doors of their home. She’s also extremely unsteady on her feet. Byrne and Pam’s caregivers have to help her with every aspect of her daily life, including getting dressed, bathing and eating.
“She can’t do anything for herself anymore,” said Byrne, adding that their children Lauren, 20, and Steven, 18, try to help when they can. “She’s 100 per cent dependent.
“Doctors say it’s just the regular progression of this (disease), but seeing such drastic changes in her lately is tough.”
Support is crucial
Dr. Susan Mercer, who works in geriatric medicine with Eastern Health, said only three per cent of dementia patients in Canada are under the age of 65, but it can be difficult, given their unique circumstances — including having to deal with younger children who are witnessing changes in their parent.
It’s why having support is so important, she said.
Mercer said it’s important that dementia patients get cognitive stimulation and physical activity.
“Even though a patient with dementia might forget when someone visits, that doesn’t make the visit any less meaningful,” said Mercer, who noted supportive environments, such as nursing homes, are typically geared toward older adults. “There’s still value in that moment.”
Kristy Mills can attest to that.
She has been Pam’s good friend for more than 20 years, and while it breaks her heart to see the changes in her, she’s just glad to be there for her.
“She wouldn’t be able to call me by name, but she recognizes me and as soon as I walk in, her face lights up,” said Mills, who is also a teacher, one of many things she has in common with Pam.
“Every time I go to see her, I keep hoping she’s not worse than the last time. But she’s still Pam and I still want to keep that connection with her. I just want to try and hold on to that friendship for as long as I can.
“And as long as I can make her happy, it’s so worth it and I’m going to be there for her … and for Peter, too, because he’s losing a lot through all this.”
Young Onset Dementia Cohen et al October 2016.mov from brainXchange on Vimeo.
Valuable visits
Byrne said he couldn’t have made it this far without that kind of support.
“The support you can get from family and friends, you can’t put a price tag on it, honestly,” said Byrne, who also noted the tremendous support of her caregivers. “And it means more now than ever.”
Byrne said staff at the Alzheimer’s Society of Newfoundland and Labrador sent him a quote six years ago, telling him it would stick with him — “The greatest gift you can give someone is your time because when you give your time, you’re giving a portion of your life that you’ll never get back.”
It did, indeed, stick with him.
“It’s so true. You just can’t put a value on the time you spend with someone with Alzheimer’s,” Byrne said. “Even if they don’t remember you after you leave, it’s the smile you put on their face for those few minutes, the bit of conversation. It just brightens their day and means the world. It definitely means to the world to Pam and to me.”
His advice to those with family members with Alzheimer’s is to not be afraid to ask for help.
“I used to be afraid, but I realize now just how valuable it is,” he said.
Byrne knows the day will soon come when Pam will have to be placed in the care of a nursing home, but for now, he’s enjoying the time he has with her.
“We’ll deal with things as they come, but for now, we’re making the best of every day,” he said.
“The first thing we do in the morning is look at each other and smile. The laughter is not as frequent as it once was, but we still have fun now and then together.
"I still think she’s amazing.”
