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Charlotte Prong Parkhill Photo

Charlotte Prong Parkhill Photo

Mary Beth Wighton, right, seen here with her partner Dawn Baxter, is working with a local Alzheimer’s research program at the University of Waterloo to raise awareness about frontotemporal dementia. Wighton is facing a fatal illness and the family is preparing for a difficult future.

Living well with dementia

(Editor’s note: This is the second part in a series about Mary Beth Wighton, who was recently diagnosed with dementia at the age of 45.)

By Charlotte Prong Parkhill
Kitchener Post staff

Mary Beth Wighton is a very private person. But she wants to share her story of what is going to happen to her, and to her family, as she lives through the final stages of a rare disease.

That’s because she knows that, along with an aging population, there’s a big spike in the numbers of people with various types of dementia expected in the years to come.

And she doesn’t think our health care system or our community supports are ready for it.

“When all these people reach that age, our health care system is truly going to be overwhelmed,” she says. “If they don’t have programs that really make sense, we’re going to be in trouble. We’re in trouble now.”

Wighton has frontotemporal dementia, a disease that she wants to raise awareness of because it is more rare than Alzheimer’s and also brings different symptoms.

For Wighton, that can mean sudden, aggressive behaviours that she can’t control.

For instance, a few weeks ago she became unreasonably angry with her 18-year-old daughter Brianna for talking on the phone late at night. She started yelling in what her partner Dawn Baxter called “a rage.”

Then she left the house in the middle of the night in a snowstorm. Police quickly found her and called Baxter, but Wighton refused to get in the police car. She walked home with the police following her.

“And Brianna was right there, waiting. I came in crying and she rubbed my back, helped get me into bed,” Wighton says. “I can’t imagine my parent doing that — and then, for her to be so gracious and loving.”

It’s tough for Baxter to see the daily changes in a woman she knows to be gentle and caring.

“This woman never swore. And this disease has made her nasty at times. I know it’s not her. I know it’s the disease,” she says.

“Just watching someone with all Mary Beth’s education and drive and motivation — watching all that turn into someone else, it’s torture. It’s constant jabs to the heart.”

Along with the emotional challenges are the practical considerations. Wighton said they’re the sandwich generation — with aging parents and a teenager at home — but a sandwich “with a couple of sides,” she jokes.

Her symptoms include body tics or constant movement. She can’t be left alone while cooking. She can’t drive or make important decisions on her own.

“Dawn is expected to work and take care of me,” Wighton says.

The closest FTD support program is in Toronto. Local day programs for people with Alzheimer’s don’t really suit Wighton’s symptoms or her age.

“I don’t fit into that. And what happens, because of incidents like what just happened with the police, they don’t necessarily want me either. They can’t control me,” Wighton says.

Sherry Dupuis, director of the Murray Alzheimer Research and Education Program, said part of her mandate is to create better language regarding these behaviours.

“We don’t label people as violent or aggressive when they’re displaying personal expressions of their experience,” she says.

“All responses have meaning, and it’s the job of professionals to explore the meaning behind the behaviour.”

Wighton’s symptoms are expected to get worse and include the potential for inappropriate sexual behaviour.

“I’m horrified to think that could happen,” she says.

The disease will eventually kill her, possibly within four years. It means she will not live to see her dream of becoming a grandmother. The family’s financial struggles mean they won’t be able to spend those years travelling and enjoying each other’s company. And eventually, Wighton knows she’ll need respite care and has accepted that.

“It absolutely feels difficult for me. I can’t imagine being cared for by anyone. I’ve always been very independent,” she says.

But in the meantime, she wants to help educate others. Years ago, she was a world traveller and manager of a training team, so education has always been a big thing for her.

“Let’s learn from the person living with dementia, and from Dawn, and from Brianna, the 18-year-old who has a parent with dementia,” she says.

“All of a sudden, these ordinary people aren’t ordinary anymore . . . and that’s why I want to share my story.”

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