McIntyre, of Sydney, has served as a caregiver for her husband, who is currently a resident of Highland Manor in Neils Harbour. She spoke movingly about their experiences since his diagnosis during the sixth annual research breakfast held by the Alzheimer Society of Nova Scotia at Centre 200 Wednesday.
Her husband is now 76, and they have been married for 32 years. McIntyre visits her husband every Saturday.
“John and I go for walks together, we sit together, we eat lunch together, we laugh and we sit with the other residents,” she said.
“I’m his wife. I can’t change things to go back to what they were, but I can enjoy what we still have. We have respect, we have compassion, the enjoyment of seeing each other, the smiles, the hugs, holding hands. We have love.”
John was diagnosed in fall 2009 with early-stage dementia. His daughter had noticed that his judgment and response time while driving had slowed.
“I thought that was a man thing,” McIntyre said to laughter. “I didn’t see the signs of a memory problem.”
Issues in the early days included planning around his inability to drive. An avid walker, John walked daily to meet up with friends for coffee every morning. For the first 18 months after his diagnosis, he was able to continue to do the things that he enjoyed, such playing guitar and singing, and telling stories.
In early 2011, when McIntyre would come home for lunch, she would sometimes find her husband wasn’t at home and she’d find him walking home from the coffee shop “in his own little world,” unaware of the time. One day, when she went looking for him after being unable to reach him by phone, she found that he had spent the entire day at Tim Hortons, not realizing that his friends had been there and gone already.
The McIntyres were able to make use of adult day programs that provided John with snacks and activities.
“He liked the idea of being with people all day, they’d pick him up in the morning, he’d spend the day with the group, and the driver would bring him home,” McIntyre said. “It provided extreme relief for me, because now I didn’t have to worry what he was doing during the day.”
Through the Alzheimer Society of Nova Scotia, McIntyre was able to access a caregiver education class, which she said provided much-needed information. John’s name was placed on a waiting list for a nursing home, they made sure their legal affairs were in order and McIntyre was able to access some respite care.
Even when John’s name was placed on the waiting list for nursing care, McIntyre didn’t believe it was a step they would have to take.
“I was saying, ‘My John would not be going there,’ but we put his name on the list because they advised that we should do so,” she said. “They saw something that I didn’t.”
John’s memory continued to deteriorate. With the help of John’s daughters, they tried activities to keep his brain active. McIntyre began attending monthly Alzheimer's disease care meetings. She was also fortunate to have support at her workplace.
As John’s disease progressed and he required more and more care, in February he was placed at the nursing home in Neils Harbour. John is now so comfortable there that McIntyre said they likely won’t move him if a placement at a closer home becomes available.
“What I’ve learned is you can’t fix the problem, you can’t fix the disease — you have to be ready to make changes in your life as the disease progresses.”
In the early stages, the changes are minor, but they become major.
“You’ll probably get angry. You’ll get mad. You’ll cry and you’ll be frustrated. It’s how you deal with these challenges that will help get you through the many stages of the disease,” McIntyre said.
Dr. Jeanne Ferguson, geriatric psychiatrist with the Cape Breton District Health Authority, and Lloyd Brown, executive director of the Alzheimer Society of Nova Scotia, also spoke during the breakfast.
Brown noted the Cape Breton event attracts more attendees than similar events in Halifax and Kentville, which he said is sign of the hard work of the local committee and the quality of presenters.