"We have put our life on hold. We live out of boxes."
On a Tuesday afternoon at a McDonald's in Mississauga, Radhika Dhingra, looking thin and frail in her wheelchair, gingerly sips from her plastic cup. She insists that her son, Shan, and his wife, Mary, bring her several times a week for the same snack: fries, apple pie and tea, which, to her 93-year-old mind, is unmatched by anything Mary or Shan can brew at home. Even at Indian restaurants, the family has, on occasion, smuggled in a McDonald's cup to fool her. Radhika's children sponsored her to come to Canada from India in 1975, after Shan's father died. Her current fixation with McDonald's, the family theorizes, is rooted in the afternoons when she took her grandkids there for a treat after school.
The fast-food chain has also been falsely imagined into her childhood memories. "My mother asked, 'Where are you going?' I'd say, 'I am going to McDonald's,'" she recites firmly in English at least a dozen times that afternoon, looping back no matter what question she is asked, even when Shan queries her in Hindi. Shan shakes his head. "She can get stuck here for hours," he sighs.
But Radhika is happy with her McDonald's fiction, and there's no sense arguing; the mixed-up facts are cemented in her mind, until, eventually, her Alzheimer's disease will steal even them away. She can be cranky, so Shan and Mary are prepared to go with whatever works. They are seniors themselves with health problems, but little time to keep up with their own appointments. Shan, 75, a retired environmental design consultant, had a heart attack in 1999 and suffers from chronic fatigue syndrome; Mary, 74, a former office administrator, has stenosis of the spine, as well as arthritis.
"We are a three-patient family," Shan says.
Throw in the complications of culture and language, and Radhika's caregiving becomes quite a challenge. Even in multicultural Toronto, resources for immigrants with dementia are spotty. Until last fall, Rhadika was living with one of her daughters in Richmond Hill, Ont., with Shan and Mary providing care for long hours and weekends. Caring for Radhika is a role that would traditionally fall to Shan, the only son, rather than his four sisters.
But Radhika needed increasingly more care, and in November, 2009, when Shan and Mary looked for a day program where the staff spoke Hindi and the food was vegetarian, the only one they could find was an hour away, in Mississauga. The driving was too onerous, so they moved.
"If you had a sick child, wouldn't you move to the place where they could get the best help?" Shan asks. Their new place is a one-bedroom apartment (Radhika has her hospital bed in the den off a sunroom), made smaller still by stacks of boxes leaning against the wall. They won't unpack, because they don't know how long they're staying; Radhika is wait-listed for long-term care - Shan and Mary visited a dozen homes before choosing three of the most culturally sensitive facilities. But they have no idea when a bed will be ready.
Meanwhile, for Mary, the move has meant fewer visits with her own mother, who is in a retirement home in Toronto after refusing to live with any of her children. "We come from different sides, that's for sure," says Mary, who married Shan in 1988 after meeting him at a group for divorced parents. If she's lucky, she sees her mom once or twice a month. She feels guilty that her time is so consumed by Radhika's care. "This is the only conflict."
Mary doesn't speak Hindi, so the bulk of her mother-in-law's care falls to Shan. She can be remarkably stubborn. They spent days searching for a missing comb, with Radhika angrily demanding it be found, that no other comb would suffice. She insists on wearing the same pale scarf every day, and when one end was shredded in the wheel of her chair, she refused to part with it.
Her daughters bought at least a dozen green scarves to replace it. None, their mother said, was the right colour. Finally, her personal support worker, Preeti, found a shade that matched, and the swap was made when Radhika wasn't looking.
Preeti - her full name is Gurpreet Kaur - is a 38-year-old Sikh originally from India, and Shan's lifesaver. He found her himself, after an exhausting "revolving door" of support workers provided by the Community Care Access Centre who could not speak Hindi or didn't understand dementia.
"Take it or leave it," Shan says he was told when he complained. "They just want to fill in the slots."
The Dhingras qualify for two hours of help each day to get Radhika washed and dressed, a job she refuses to let her son do, and which is difficult for Mary, with her arthritis and back problems. In four months, about 20 different women appeared at the door in the morning. Each time, Shan would have to train them in Radhika's particular habits - her slow pace, what goes where, her preference for the white facecloth to wash her hands. Her English, always stumbling, has largely vanished since her diagnosis; in agitated moments, she further complicates matters by resorting to an Urdu dialect she learned as a child.
One morning in the bathtub, his mother yelled, "Hot! Hot! Hot!" in broken English, harshly scolding the latest support worker, an earnest and friendly Bosnian immigrant who, Shan says, was trying her best to be helpful. "Are you a numbskull?" Radhika scolded, reverting back to Hindi. "You aren't listening to me!"
"She didn't understand," Shan says. "Was my mother saying, 'The water is too hot,' or 'I need more hot water?' That's not safe." Instead of getting a break from his role as caregiver when the support workers came, Shan stood outside the bathroom door translating. (He also has to do this at each doctor's appointment, and every time she takes a memory test, which is in English.)
Finally this summer, he found Preeti through India Rainbow, a community group for South Asian seniors, and asked the CCAC to hire her for his mother. Preeti, who has a quiet, patient manner, won her over by knowing the words to an old Indian song that Radhika likes to sing. (She has no trouble remembering the words to long prayers and songs that she learned when she was a child.) Now, Radhika warmly calls her my "Beti," which means daughter, and Mary and Shan can leave the house when she arrives.
Twice a week, Radhika spends the day at India Rainbow, and on one Tuesday morning in late August, she sat grim-faced on a couch beside the program co-ordinator, Sarah Ivan, who started off by greeting the 15 seniors in a list of languages, including English, Punjabi and Hindi. Not everyone in the session had dementia; about half have medical conditions or mobility issues, others don't like staying home alone all day while their children work.
Before the group sessions began, one man was carefully colouring a picture of a giraffe torn from a child's colouring book, another flipped through a newspaper.
Ms. Ivan called for jokes. There was a chart on the wall with the heading Rainbow Idol, that awarded stars to participants for "making someone smile, telling a joke, taking a walk."
At the end of the month, the one with the most stars wins a certificate. (Radhika had collected three stars for each of the days she had come that month.)
There were varying levels of interest in the session - one woman had come prepared with a joke about a telephone repairman, while the chin of a man in a green turban had drooped to his chest.
Exercise class began with a round of laughter ("One. Two. Three. Ha, Ha, Ha.). They marched in their chairs and puffed up their cheeks, and pantomimed rowing with a swimming noodle. Radhika was coaxed into moving her feet by a staff member, but looked unimpressed. A parachute emerged and plastic beach balls were tossed on top; the residents were told to fling the edges of the parachute to bounce the balls. It's a game for kindergarteners, and the members of the group, even Radhika, were suddenly energized.
"If you don't hit the ceiling, no lunch!" Ms. Ivan told them, to laughter. Lunch is always a traditional vegetarian meal. On this day, it was split moong dal, a curry dish. Radhika sat eating in silence with two other women. Because she had seemed tired that morning, Shan and Mary were returning early to pick her up and take her home for a nap.
The three of them can go on this way for a while, but Radhika is slowly declining. Her topics for discussion are shrinking away "like the walls are closing in," Mary says. And Radhika revisits some of them - the story of her scouting trophy, the Muslim friend she had in school, the fictional McDonald's - so often that Shan can predict her next sentence. This summer, a daughter, now 72, visited from India, and Radhika refused to recognize her. "My daughter is young and beautiful," she insisted, and wouldn't let Shan's sister sit at her side.
Shan can usually coax his mom into a good mood by singing in Hindi. "You have to be innovative. Right now, the song is working."
But not forever. Shan and Mary, living in an apartment of boxes, with their own uncertain health, can't last.
One morning, Shan woke up to start the coffeemaker and then returned to bed, having forgotten to do so - a silly mistake, but in the back of his mind, he worries that maybe dementia is in his future. Leaving McDonald's, he and Mary work together, carefully wheeling Radhika out the door and over the curb, then holding her arm while she steps into the car.
Caring for his mother is a journey, Shan says, but worry lines his face.
"How am I going to give oxygen to anyone else, if I don't have oxygen for myself?"