Faced with Alzheimer’s disease, this couple still finds time to dance, and to seize the joy of the moment

When Sheree Fitch’s husband was diagnosed with early Alzheimer’s disease, she sought information to help them cope, but the negativity she found only increased her distress.

“[It was all] “Oh, it’s a horrible disease, and it’s a nightmare, and oh, you’re going to hate your spouse,” said Fitch, the author best known for her children’s books. mabel murple And Sleeping dragons all around.

“And I kept thinking, ‘No, no, there’s got to be a way that this can also be something that you travel together,'” she said. The flow Matt Galloway.

“It’s a different kind of life, but you have to find a way to hold on to that joy and that beautiful part of who we are together.”

Fitch’s husband, Gilles Plante, worked as a CBC journalist before retiring at 53 and building the couple’s dream home in River John, a small fishing village in rural Nova Scotia. His diagnosis came in early 2017, at the age of 60.

Doctors said they expected another five good years at most, but “we’re past that…so I’m not complaining for sure,” Plante told Galloway.

“It’s not perfect, but not as bad as I expected.”

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Laura Middleton is an Associate Professor in the Department of Kinesiology and Health Sciences at the University of Waterloo. She will moderate the online panel “Finding Hope in Dementia”.

According to the Alzheimer Society of Canada, 28,000 people in Canada live with early-onset dementia. A case is considered early if it is diagnosed before the age of 65, although it affects some people as young as 30.

The couple moved to River John in 2011 and set out to turn an old property into a working hobby farm – which they called the Happy Doodle Do. Plante has a carpentry shop where he makes and repairs for the farm. At the time of his diagnosis, he transformed an old granary into a small bookstore open for a few weeks in the summer, decked out in fantastic colors that reflect Fitch’s whimsical handwriting.

“When you have animals and a big place, there is always something to do… [it’s a] goal for the next day and the next,” Plante said.

“I wouldn’t leave this place for [anything]. They should put me in the truck,” he said, laughing.

Fitch described the house they built as a “childhood dream come true”.

“The river is below us and it’s beautiful. And across the road we have critters, lots of them. Rabbits, sheep, donkeys and chickens,” a- she declared.

Although the farm and its workshop keep Plante active, they disagree on how active he should be.

“I’m worried about his fingers and the saws,” Fitch said, adding that Plante insists he keep doing the things he loves to do.

“He’s like, ‘But Sheree, I’d rather die doing what I’d like to do.’ And I say to myself: “Yes, but like that, there will be a lot of blood”, she said.

“You have to laugh about it. Because I have to learn to let go and let Gilles do what he wants to do, within the limits – and Gilles has to listen to me too.”

Fitch said the years since his diagnosis have been a learning curve, and still are, but they both decided to share their experience to break taboos and help others facing a similar diagnosis.

“I want people to know that there is a way to endure this disease that isn’t this total, dark nightmare,” she said.

“There’s a joy in this chapter of our life together that I can’t quite put into words, but it’s real.”

Plante says he has no regrets.

“I’m in a good position and even if I die tomorrow I say, ‘OK, I’ve done my time and I’ll wait for it on the other side.'”

Find joy in the present moment

Fitch and Plante met in 1992 and married two years later. She said he has been a “quiet force” in her life, teaching her to live in the moment.

This has been the key to living with Alzheimer’s disease.

“Nothing is predictable. It can change every hour – sometimes every five minutes – and so on. [you need] this ability to kind of be in this joyful moment and let it go,” she said.

“It’s just amazing to me – how much fun we still have, how we dance.”

There are times when she’s angry, Fitch said, and times when it’s hard not to compare their current lives to the one they once led. But there are also times when it’s clear to her that even though her memory is failing, Plante still has her wisdom and the love they share.

In 2018, a year after Plante’s diagnosis, the couple lost a son, Dustin.

“I don’t remember much, Matt, of that year, but I can tell you that my husband with Alzheimer’s cared for me more than I cared for him,” he said. she told Galloway.

But even though she sometimes feels overwhelmed, those feelings don’t last.

“I know the man I had in my life. I know what we had. And so I’m grateful — more than anything else, I’m grateful,” she said.

“Love This Man Enough”

On the evening of his diagnosis, Plante told Fitch that he would one day like to have access to medical assistance in dying (MAID). His mother suffered from Alzheimer’s disease at the end of her life, and he did not want to go through the same ordeal.

The couple disagreed over her wish for nearly two years, Fitch said.

“I was angry. I said, ‘Don’t you think I love you enough to take care of you like everyone else?'” she said.

“Then that night…he said, ‘Sheree, it’s not about you. It’s about what I want.'”

In that second, she realized that she “would have to find a way to love this man enough to help him do what he wanted to do, when he wanted to do it.”

Under current legislation, people seeking MAID must be able to provide informed consent at the time of the procedure. In cases involving Alzheimer’s disease, patients fear the disease will rob them of this ability to consent – and some choose assisted death sooner when they can still meet the requirements.

The federal government is reviewing a range of extensions to MAID legislation, including prior consent in certain circumstances. Provinces and territories also apply their own regulations. In February, Quebec introduced a bill which would establish guidelines for authorizing certain advance requests.

Plante doesn’t plan on accessing MAID anytime soon. He told Fitch that when he can no longer get up, dress, and work on the farm he loves, then that’s not the life he wants to lead.

“It’s his decision about ‘when’ and so that’s the framework we have to work within,” Fitch said.

“And yeah, I’ll layer it over there to do the chores, you can be damn sure of that.”

In the spring, and beyond

With spring approaching, the couple are planning a year of rebuilding at the Happy Doodle Do Hobby Farm. Their barn was damaged by post-tropical storm Fiona last year, and Plante will use his building skills to repair it.

“It’s easier because you don’t have to be very fancy – a barn is a barn,” he said.

The bookstore will remain closed this summer, to give them time to catch their breath.

“I can’t wait to plant things…coming out of winter is the best part of the year, and summer to look forward to,” Fitch said.

The children’s author struggled to invoke the playful verse she’s known for, but kept a diary of their experiences with Alzheimer’s, with ongoing work she calls Moments.

In one piece, she included a line from the wedding vows they took nearly 30 years ago. At the time, she didn’t mean “till death do us part”, so Plante suggested an alternative.

“He said, ‘In French, we have an expression: And beyondand that means ‘and beyond,'” she said.

“We’re living that. We’re living that moment that we know will be beyond that as well. And I think when you can stay in that area, it’s fine.”