Dementia: A Loving Tribute

The high school gym might have been crowded with dancing teenagers, but Karen Toole wasn’t always a part of the scene. If the party was lame, she’d take off early and head home—to hang out with her dad, Jerry.

Even back then, 40 years ago, father and daughter shared the kind of close relationship often idealized in the movies. “We were best friends,” Karen, 53, recalls.

These days, her relationship with dad is very different.

Jerry, 87, suffers from dementia, a progressive degeneration of the brain that affects one in 11 Canadian seniors, Alzheimer’s disease being the most common form.

As dementia advances, plaques or tiny deposits in the brain become toxic and cause cell death and decline, creating symptoms such as loss of memory, judgment, and reasoning, and changes in mood, behaviour, and communicative abilities.

For the Toole family, it was a new twitchiness to Jerry’s movements that triggered awareness of his condition about three years ago. Prior to that, the odd bout of vagueness had been overlooked as they had other health problems to deal with. Jerry’s gregarious nature had suited him well as owner of a cleaning business, but years of repetitive labour had left him with arthritis.

Still his spunkiness stayed intact when the diagnosis came, Karen recalls. “He was always smiling, always telling jokes,” she tells alive.

For almost two years, Jerry’s health was manageable enough that the family rallied around to provide the extra care. Seeing to his physical needs was a challenge but not as tough as watching his mental decline.

One day Karen’s mom Jane was cooking meatballs and Jerry kept asking about a Santa hat. Frustrated, she temporarily left him to his own devices while she finished the dinner. The next thing Jane knew, the police were at her door, Jerry in tow. He’d been banging on all the neighbours’ doors.

As upsetting as it was, the Tooles tried to focus on the better moments, the lucid moments, during which Jerry would snap back to reality, if only long enough to tell his wife she was pretty. Or tell his daughter—Toolbug, he’d always called her—that he loved her. Even in his declining state, he clung to humour.

Eventually, Jerry stopped walking. He’d had a hip replacement, and although the doctors told the family he was fine to walk, he never did. Loss of initiative, common with dementia, had set in.

For Karen, seeing her father in a wheelchair was traumatic. Somehow his physical deterioration made everything more painful. She grieved. She questioned her faith. It was hard to find the good, and harder to believe in it.

Special moments with her dad have convinced her to keep believing.

They happen less and less, but they’re powerful. “By this point, there’s no capacity for bull left,” she says. “A man is stripped down to his essence. You see his soul.”

Jerry’s priority remains his family. Some thoughts clearly linger heavily in his darkening mind. He apologizes repeatedly for being “a bad husband” and clings to reassurances that his family remembers him even when he can’t remember them.

Recently, he has started babbling. He’s on morphine for pain and these last few months, his condition has worsened. The doctors have explained that the next—and likely final–stage of his disease is silence, so Karen spends as much time with him as possible.

“Toolbug, are you here?” he asks suddenly as she pushes his wheelchair during a visit (he’s now in a special care home).

“I’m here, Dad.”

“Good. Help me decide. You can help me decide.” Jerry has been mumbling about heaven a lot, so Karen guesses what he’s not saying. “You do what you have to do, Dad,” she tells him. “Don’t worry about us. We love you. We remember you and always will. We’re fine, so you do what you have to do.”

Her role now, she has accepted, is to give him peace and closure, to reassure him that he has always been a wonderful husband, a great dad, and the best friend a girl could have.

The face of dementia in Canada

• Alzheimer’s disease and associated dementias are often misrepresented; the Alzheimer’s Society of Canada sets things straight:
• Half a million Canadians have Alzheimer’s disease or a related dementia. Seventy-one thousand of them are under 65.
• Alzheimer’s disease is the leading form of dementia, representing 64 percent of all dementias.
• Women make up almost three-quarters of Alzheimer’s patients.
• Vascular dementia is the second most common form of dementia, representing 20 percent of all dementias.
• More than one million people are expected to have dementia within 25 years.

Impact of care

Caregiving is a critical issue for people living with Alzheimer’s disease or a related dementia and for Canadians as a whole. According to the Canadian Caregiving Coalition:

• One in five Canadians age 45 and over are providing some form of care to seniors who have long-term health problems.
• Almost half the informal caregivers in Canada are between 45 and 54, many balancing this role with job and family responsibilities.
• A quarter of all informal caregivers are seniors themselves, and a third of them (over 200,000 people) are over the age of 75.
• Family caregivers are the invisible and hidden backbone of the health and long-term care system in Canada, contributing over $5 billion dollars of unpaid care.

Dispelling the myths

The Alzheimer’s Society of Canada (ASC) wants all Canadians to know the truth about this disease. Here are some compelling facts from the ASC:

• Extensive research has failed to find evidence that shows a conclusive link between aluminum and Alzheimer’s disease.
• Although genetics play a role in the disease, only five to seven percent of people diagnosed have the inherited form of Alzheimer’s disease.
• Earlier diagnosis, access to better treatment options, and a greater understanding of the disease itself are changing the lives of people with Alzheimer’s disease. Many people continue to lead active and meaningful lives long after diagnosis.
• In the past decade, people living with dementia have become important advocates for themselves, helping to raise awareness, as well as speaking out about their needs for care and treatment.