TORONTO, Ontario / The Globe & Mail / Life / Health & Fitness / Dementia / September 22, 2010
Susan Gustafson fell for a funny, curious, active man. Then, one day out of the blue, he began to fade away
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
By Erin Anderssen
Winnipeg — Globe and Mail Update
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?’”
John Woods for The Globe and Mail
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.
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.”
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.”
John Woods for The Globe and Mail
“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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