Humour shapes the journey

By Michelle Pressé

Reginald Stuart had been dean of arts and science at Mount Saint Vincent University for almost 25 years when he started missing meetings and classes.

Stuart, now 72, and his wife Penni, 75, began to worry – it wasn’t like him to be forgetful. After a visit to the family doctor in 2012, Stuart was referred to a memory clinic. After months of tests, he was diagnosed with dementia.

In 2011, the Alzheimer’s Society of Canada reported 747,000 Canadians were living with Alzheimer’s disease and other dementias. By 2031, the number could almost double to 1.4 million.

“Most of us know someone living with dementia and we encounter people living with dementia in our everyday lives without knowing it,” says Linda Bird, director of programs and services for the Alzheimer’s Society of Nova Scotia. “It’s a disease you can’t see from the outside.”

January is Alzheimer’s Awareness Month in Canada. With 17,000 Nova Scotians living with the disease, Bird says there’s no better time for people in the province to get educated about it.

Most people associate Alzheimer’s with memory loss, she says, but the disease includes symptoms such as difficulties with abstract thinking, problem solving, language, personality changes and feeling disoriented. Symptoms can begin rapidly and worsen over time, often causing patients and their caregivers to suffer from depression.

But the Stuarts saw the diagnosis as inspiration to embark on a journey that led them to the Panama Canal, a place they dreamed of visiting for years.

As a historian, Reg Stuart calls it “the trip of a lifetime.” He retired in May of 2013. It was an easy decision for him. “It’s not like everything is missing suddenly in my life,” he says.

He feels comforted knowing his nine history books about American history, Canadian-American Relations and Canadian foreign policy are still available in libraries so people can learn from him, even if it’s not in a lecture or conference.

Since retiring, the couple of 42 years has been enjoying life and approaching Alzheimer’s with humour. Reg Stuart jokes that Alzheimer’s is “a wonderful thing to have. You can excuse almost anything. I highly recommend it.”

“I don’t,” his wife laughs.

For Reg Stuart, the hardest part of living with Alzheimer’s is the frustration of constantly forgetting where he put his things. He says it’s also hard knowing how difficult it is for his wife.

Penni Stuart says she misses him doing the driving and having intellectual conversations together at dinner. She’s been following the news on the upcoming American election, and while he is interested, the details are complex. But more than anything, she misses “the necessary support one needs in life.”

Across the country in Victoria, B.C., the couple’s 41-year-old son, Jona, was shocked to learn about his father’s diagnosis.

“It occurred to him that he might inherit the disease,” says Reg Stuart, whose mother passed away at 82 with Alzheimer’s. Because the disease is linked with genetics, people who have a parent, sibling or child with Alzheimer’s are more likely to develop the disease.

Penni Stuart says getting used to “the new normal” is difficult, but Alzheimer’s programs in the province provide support for patients and caregivers. After her husband’s diagnosis, she participated in “Shaping the Journey,” a program that educates Alzheimer’s caregivers about resources and how to manage situations.

Bird says support is vital because of the province’s aging population.

“We need to support people with Alzheimer’s whether they’re a family member, or just meet them at the grocery store or in line at the bank,” she says.

While education about Alzheimer’s can help people identify the signs earlier, Stuart says he wants more people to be educated about how to treat those living with the disease.

“People with Alzheimer’s are still the same people,” he says. “I suspect you could sit down and talk to me for quite a while and not know that I have Alzheimer’s.”

He isn’t letting the disease, or negative thinking, take over his life.

“One of the advantages to Alzheimer’s is you forget about so much, you don’t have as much to worry about.”