> Emotional and Mental Health > Brain Function

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

Michelle Hancock wishes she remembers more about her grandfather, who died with Parkinson’s and Alzheimer’s when she was a teenager. michellehancock.ca

Source: alive #324, October 2009