The husband of the youngest-known person in Edmonton to be diagnosed with early onset Alzheimer’s is sharing the couple’s story of love and commitment, and raising awareness about the disease.
Bill Hobbins’ wife Sue Richards is starting to forget who he is.
It was when Richards was in her late 30s that she started to notice problems with her memory.
She was diagnosed with early onset Alzheimer’s at the age of 40.
“She almost had a nervous breakdown knowing that things were showing as much as they were and at that point I convinced her then that we should really get her tested and find out what was causing it,” Hobbins said.
Now at just 46-years-old, Richards is the youngest-known person in Edmonton to have early onset Alzheimer’s.
The couple, who used to love biking, skiing and hiking together, was forced onto a difficult journey.
“I can't say that some days aren't a challenge and I honestly have some good crying that I do but I really got to put on a brave face and come in and let Sue know that everything is good. I often remind her that,” Hobbins said.
“I told Sue right from the get-go that I was here for the long-haul and she could count on me for support.”
Hobbins took care of Richards for as long as he could at their home, feeding, bathing and dressing her.
“There were days where there were a lot of tears shed,” Hobbins said.
“She would often say she didn’t want this disease and nobody does. I continued to tell her that I love her dearly and I wasn’t going anywhere. She didn’t have to face this thing alone and I still today stand by her 100 per cent.”
But it got to a point where Hobbins could no longer care for her on his own.
Richards now lives in long-term care at the Edmonton General.
She doesn’t speak, and has to wear a helmet in case she falls.
Her disease is something experts say more and more Albertans are being diagnosed with.
Early onset Alzheimer’s is a form of dementia that strikes people under the age of 65.
The latest numbers suggest about 15 per cent of Alzheimer’s patients in Alberta are under 65.
“Here in Alberta, it’s more common than we realize. That number is the highest in Canada, in all of the provinces,” said Bill Gaudette with the Alzheimer Society.
“We're not sure why but it's more commonly here, apparently, than in other provinces.”
Gaudette says research over the past five years has shown the disease is affecting more people in early middle age, challenging the stereotypes surrounding Alzheimer’s.
“We have stereotypical ideas of Alzheimer’s,” he said. “I think one of those stereotypical perceptions is that's an old persons disease. You get to a certain point in your life where you have those kinds of conditions, which is not true, but that is the stereotypical perception.”
Gaudette hopes sharing stories like Richards’ will encourage people to talk about Alzheimer’s and dementia.
“It's still not quite acceptable to talk about them openly so we pretend, grandma’s a little different but we don’t ever say she’s got dementia, we avoid those titles or terms,” Gaudette said.
Hobbins has received support from the Alzheimer Society and has shared his story at public speaking engagements through the organization.
He says while Richards' may not show it, he believes his wife is still aware of her surroundings.
And while it’s devastating for him to watch the disease progress in her, Hobbins says he made a promise to stay by her side and intends to do so, even as she slowly forgets who he is.
“Often the staff says, when I come into the unit, they immediately see a change in her. Personally for myself, I’m still able to make her laugh and smile and get a reaction from her in a positive way. That makes me feel so much better,” Hobbins said.
“You really learn to take stock of those little things that mean so much, you hold on dearly to those precious memories we’ve had over the years.”
With files from Carmen Leibel