Emily Doyle and her partner David Simon, an avid fisherman now living with dementia. (Photo courtesy of Alzheimer Society of B.C.)

No one should have to face the dementia journey alone

Alzheimer Society of B.C. shares stories for Alzheimer’s awareness month

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Alzheimer Society of B.C.

The Alzheimer Society of B.C. is sharing stories and encouraging the public to learn about its Alzheimer’s Awareness Month campaign. It is sharing resources to help people stay connected to loved ones in their lives affected by the disease and find support from the society.

“In an increasingly uncertain world, it is so important to show people living with dementia they’re not alone,” said Jane Hope, support and education coordinator at the Alzheimer Society of B.C.’s North and Central Island resource centre, which serves people in Ladysmith.

Emily Doyle, a caregiver living in Parksville whose spouse, David, was diagnosed with Alzheimer’s disease in 2017, said she was shocked when she found out. After returning from a fishing trip up-Island, the couple met with a geriatric psychiatrist because David had been experiencing low energy and mobility issues since a bout of pneumonia earlier that year. “He didn’t show any memory loss at the time,” she said.

Emily is one of many British Columbians joining forces with the Alzheimer Society this month to say, “don’t change. Even if they do.” The campaign aims to inspire mid-Island residents to reflect on the ways they will continue to show up for the people in their lives who are living with dementia or are giving care.

The couple worked with a specialist to see if medications could be used to slow the progression of David’s disease. But they ultimately found the side effects outweighed the benefits, including issues with his balance that resulted in him voluntarily giving up his driver’s license.

Though they asked to be evaluated for access to health care services, including home support, day programs and respite care, in August 2018, David wasn’t evaluated until January 2019. They were told he should be on the waitlist for long-term care.

Despite this, Emily wanted to keep David home, feeling if they had access to support services, they would be able to manage the situation.

When Emily began having challenges caregiving, the geriatric specialist referred them to the Alzheimer Society of B.C., where she was able to participate in a number of education sessions with other caregivers.

“There was so much good advice, like keeping a journal to track the progression,” Emily said. “We got to meet other people going through the same thing — although everybody’s journey is different.” They stayed in contact with other families they met, having lunches and going on walks with them. “That was incredibly helpful at the time.”

“Dementia can leave people living with the disease and their caregivers feeling isolated,” Hope said. “Being able to talk about what they’re experiencing with other people affected by dementia can have a huge impact on their ability to cope.”

Emily and David made a point of trying to stay connected to the people around them, regularly attending family events and their neighbourhood’s happy hour parties until David started to have problems keeping up with conversations and showing changes in behaviour. “People still invited us,” Emily said. “But it became awkward.”

David moved into long-term care in 2019, initially at a care home that was farther away but offered more entertainment and opportunities to keep him engaged. He was scheduled to move closer to Emily in March 2020 but then the pandemic began, which meant he had to stay where he was. They weren’t able to see each other again for four months, and even then, only through FaceTime. “He didn’t recognize me,” Emily said.

COVID-19 has continued to be a challenge for Emily and David. He was moved to a closer care home in September 2020 and visits were limited to outdoor trips where David was often too distracted by his environment for their visits to feel meaningful.

Along the way, Emily has continued to adapt to David’s changing abilities while working to keep him engaged. While he couldn’t play music or go fishing anymore, she was able to play the music he loved – the Eagles or Rod Stewart – and recorded fishing shows for him to watch. As his disease has progressed, that has had to change.

“I visit him mostly for meals now,” she said. “He doesn’t talk much, but at least I can chit-chat with him and he’ll laugh if I make a joke about making him put up the Christmas lights because he never liked doing that.”

Alzheimer's Disease