In attending a support group for the loved ones of those living with Alzheimer’s Disease, Erna de Burger-Fex learned she was experiencing something called ambiguous grief, a profound sense of loss without a death.
“You're losing them a little bit all the time,” said Erna.
The long-time columnist for the defunct Northern Life newspaper and now Sudbury.com attended the 2024 IG Wealth Management Walk for Alzheimer's at Delki Dozzi Park May 25 along with husband Alex Fex.
Alex, a former mayor of Walden, Inco employee and sports star in his youth, was diagnosed with Alzheimer’s eight years ago.
“I look at him sometimes, and I think you're such an intelligent man, what happened?” she said. “He was in politics, he was in real estate. He worked with Inco in the office, he was in all kinds of sports. And it’s different.”
It all began with uncharacteristic bursts of anger, although Erna is quick to point out that Alex was never violent toward her. Now he’s actually very passive and affectionate.
Still playing hockey as of this spring, 82-year-old Alex is doing well physically, although Erna can see the progression of his disease of late. He lost his driver’s licence around 18 months ago, and has his moments of confusion. Erna is his primary caregiver.
“It's so hard to watch,” Erna said. “We've been married 60 years, we've known each other 65, and to watch this decline is very, very difficult. I cry sometimes in the bathroom with the door closed so that he doesn't see me cry, because he'd say, ‘Why are you crying?’”
Erna urges those who think their family members may be in the early stages of Alzheimer’s to visit their primary care provider, as they can provide a referral to a geriatrician for diagnosis.
She also greatly recommends they seek services from the Alzheimer Society of Sudbury-Manitoulin North Bay & Districts, which include a caregiver support group, adult day program, assessments and system navigation.
Shannon Ketchabaw, who’s the executive director of the local Alzheimer Society branch, also has personal experience of the disease.
Her father, Joey MacDonald, was also diagnosed with Alzheimer’s eight years ago, at the age of 66. He’s unfortunately now in the end stage of the disease, living in a long-term care home, as he can no longer be managed at home.
“This is extremely personal,” Ketchabaw said.
She said her parents don’t live in the Greater Sudbury area, but they are also receiving support from the Alzheimer Society, which has made their journey a bit easier.
“It doesn't change that you're a care partner 24/7 and caregiving for someone, that doesn't change that journey, but it certainly helps that there's support out there or people you can call or you can get that little bit of respite through a day program for a couple hours a day,” she said.
She said more than 6,000 people in the local society’s catchment area have been diagnosed, and 650,000 nationally. And with the population aging, this number will only rise.
With an Alzheimer’s diagnosis being an overwhelming and lonely time for the person diagnosed and their loved ones alike, services provided by the society are essential, she said.
“We help keep people at home,” Ketchabaw said. “We help people to stay and have the stability that they need and not have to present at the hospital department.”
Although this year’s Walk for Alzheimer’s, which supports the work of the society, was unfortunately held on a cool, rainy Saturday this year, the event had a good turnout. About 140 people had registered to take part, contributing toward a fundraising goal of $70,000.
“All of the money we raise today, it remains local,” Ketchabaw said. “It supports our programs here in the community.”
Heidi Ulrichsen is Sudbury.com’s assistant editor. She also covers education and the arts scene.
