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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 ...

Dave is indifferent, Susan believes, to his own disease - or at least, he never really acknowledged it, or appeared shamed by it. After he was diagnosed, she agonized over how to get rid of his van without causing conflict. She let the battery die on a cold Winnipeg morning, and told him: "Someone is going to drive you." Once in a while, he'd take the keys and try to start the engine. "We'll have to get it fixed," Susan would say vaguely, and he'd forget about it. Finally, she kept Dave distracted while the vehicle was taken away on a flatbed truck. "He never said a word. To this day, he's never noticed it was gone. I worried about it for a year."

Dave, who at 57 is strong and able-bodied, was told he couldn't stay at a day program because he was too 'busy.'

57 laps

There's no easy place for a physically strong adult with dementia. Susan tried a seniors' day program, but when the staff weren't watching, Dave would drink coffee all day and make loud outbursts that disturbed the older patients - at one stage, he liked making bebop patter to Mary Had a Little Lamb. She tried a second place that has an indoor track: Dave walked it 57 times in one afternoon; he was just too "busy," Susan was informed, to stay at the day program. But she couldn't leave him at home, the police had already been called to a nearby strip mall after he wandered into a staff room and was caught rooting through the fridge. When the officers spoke to him, he couldn't give his name or address. They let him go. Susan found out only when she called the mall after Dave mentioned someone had been mean to him. "He was oblivious."

So she went to local home-care agency, and pushed until she received day-long care for him, someone to be with him while she was at work. That has been another frustration: Sometimes, the worker doesn't show and Susan has to leave school for the afternoon. And often, Dave is allowed to just sleep or watch television all day, which means he doesn't get a lot of stimulation. To fill the gaps, she relies on her mother and his parents, who are in the mid-80s and live across town. Dave's daughter, Danielle, now 25, also visits.

Over iced tea on Susan's patio, Tom and Barb Gustafson discuss their son's illness while he takes a nap inside. They say it has been hard to watch him die this way.  "You think you'll go before your children," Mr. Gustafson says. "I do a lot of crying," his wife adds. In May she answered the phone and heard Dave say, "Hi, mom." He hadn't called her in two years. "He remembered that I was his mother. I was so excited."

Susan expects she'll have to put her husband in a home by next year.

Ever downhill

"Sometimes a window opens," Susan observes, quoting Dave's doctor. A few weeks ago, Susan recalls, Dave walked into the produce section of the grocery store and said: "Wow, it's really cold in here." More words than he'd strung together in months.

"He picks up more than you know," Kay says.

"But the windows," says Susan, "are getting smaller." 

Talking to her is like listening to a mom's complaints - from the lousy day care to those stressful trips to the grocery store. "Some of the behaviours can drive you up a wall," she says. "Like sometimes when I  am making dinner and he is glued to me. Like when your kids come home and they are hanging off your legs."

Susan carries cards in her purse, describing his dementia and thanking people for "your patience with my husband." She doesn't need the cards as often any more; as the disease progresses, her husband becomes more complacent. Dave used to grab chocolate bars at the checkout and then get asked to put them back. Now, she gives him the produce bags to hold, and he trails behind her, looking like a bored husband on a shopping errand, holding them open when she asks. "Good job, Dave," she praises.

By next January, Susan suspects she will have to put him in a home. His disease is considered "relentlessly progressive." And she is exhausted: working long days, and coming home at night to a man-child husband who knows her now only as the woman who takes care of him. "When I have a really bad day," she says, "I phone a friend." Or she goes to visit one, parking her husband in a corner with a colouring book. 

It's not the life they imagined, the one promised in the smiling wedding pictures on her bookshelf. "People say, 'How do you handle it?' 'Well,' I always say, 'What choice do I have?'"

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