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Susan Gustafson and her husband, Dave, at home in Winnipeg. Dave, 57, was diagnosed with dementia in 2008. (John Woods for The Globe and Mail)
Susan Gustafson and her husband, Dave, at home in Winnipeg. Dave, 57, was diagnosed with dementia in 2008. (John Woods for The Globe and Mail)

Disappearing Dave Add to ...

Susan Gustafson, a school principal, came home from work in 2007 and found her husband, Dave, on the couch. "I lost my job," he told her, nonchalantly, and refused to give any other explanation. She was shocked: Dave had worked as a technical writer and illustrator for an aerospace company for six years. It was a good position, and he had not mentioned any problem, although he had seemed a little depressed for a few months.

She didn't pry, figuring he'd talk about it when he was ready. But, at 53, he was oddly unfazed about being fired, spending all day on the couch. He didn't want to go anywhere, so she went out with their friends on her own. His job hunt was half-hearted. Two new jobs didn't last; in one case, he was let go after two days. "I couldn't learn the software fast enough," he said.

This is not my husband, Susan thought, tiptoeing around the house. But dementia never occurred to her. She, like most people, considered it a disease of the elderly, a common misconception that often leads to late diagnosis when the affliction strikes early.

But something was wrong. Her husband was a computer engineer who had taken courses all his life, an outgoing toastmaster, a hockey player until suffering an off-ice heart attack a decade earlier. As a 12-year-old, he'd posted signs on a family camping trip directing "chess players of all ages" to his site for matches. He and Susan had met at a dance at the Scandinavia Club in 1992, and married in 1995; Dave had a 6-year-old daughter from a previous relationship. An award-winning educator, Susan had fallen in love with his sense of humour and his desire to learn. 

Finally, in May, 2008, a year after he'd been fired, Susan and his mom persuaded Dave to go for a check-up. At the appointment, he stumbled through the doctor's questions. A week later, he took a memory test and couldn't draw a clock. A nuclear imaging scan, using dye to map his brain, found creeping damage on both sides - evidence of frontal temporal dementia. This explained the laying around, and the apathy about the future, which are common symptoms.

It's also a disease that strikes early, and often advances quickly. The doctor gave him five years. Susan was stunned: "We equate dementia with Alzheimer's, and Alzheimer's with grandpa."

Dave was unperturbed.

"It was as if the neurologist had said it's raining outside," Susan recalls.

"I differ in my opinion," Dave told the doctor. And later at home, to Susan, "There's nothing wrong with me. When I get a job, things will be fine."

Susan, now 52, says: "I remember staring at him, thinking, 'Oh, my god, what am I going to do?'"

Dave's diagnosis came as a shock to Susan: 'I thought I was going to die,' she says.



Back to the future

Fast-forward two years. Susan gets Dave up in the morning, and tucks him at night. When they go out, she brings a change of clothes and a bag of colouring books and comics to keep him occupied. They play Snakes and Ladders - although Dave, Susan explains, often climbs ladders randomly and ignores the snakes - and when he recently peed by the car in Assiniboine Park, she stood at his side, hoping the passing cyclists and dog watchers wouldn't notice.

"I thought I was going to die," she says.

     Out for breakfast with her 81-year-old mom, Kay Jack, at a restaurant chosen because it's quiet and the food comes quickly, Susan hops between discussing a $5 sale on lobster tails and the city's transit developments, and quietly reminding Dave to wipe his nose and chew his food - just like a mother multitasking with her toddler.

But Dave is the opposite of a toddler - he is a tall and hefty 57-year-old rapidly unlearning the practical business of adulthood. He can still read, when Susan, with her patient teacher's voice, encourages him to do so: "Russian. Spy. Swap," he recites a newspaper headline robotically, but the words mean nothing. He flips the pages of a Fantastic 4 comic, ignoring the conversation. "Dave, would you like lobster on the barbecue?" Kay asks. "Yeah," he replies, without emotion.

While Kay and Susan are chatting, he suddenly stands up and wanders off without a word. "I guess we're walking," Susan says, and trails after him. She doesn't try to stop him; he's too strong and stubborn. She's not afraid he'll hurt her, she says, it's just easier this way: At home, until she padlocked the gate, he would head off down the street. Susan learned to go with him, until he turned back home.

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