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Images of Jay Boppre and with some of his family members and caregivers at his daughter's home outside in Kamloops, B.C. on July 1, 2010. (Peter Power/Peter Power for The Globe and Mail)
Images of Jay Boppre and with some of his family members and caregivers at his daughter's home outside in Kamloops, B.C. on July 1, 2010. (Peter Power/Peter Power for The Globe and Mail)

Moderate Dementia

Jay Boppre: A second childhood Add to ...

"I want to get in as much time with him as I can. Just to give him the best life possible while he's here."

'Scrub your hands together, Dad."

"The soap is in your hands. Wash your hands."

"Can you turn it off, Dad?"

"No, not the light switch, Dad. The water."

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Danielle Neilly is trying to keep her cool and get her father to bed one evening in June. "Yep, yep," Jay Boppre answers quietly, standing at the sink, reaching and stepping randomly, hoping he'll make the right move. Beside him, his four-year-old granddaughter, Jaelynn, finishes brushing her teeth, hops off her stool and goes to bed to wait for her story.

Alzheimer's has flipped time upside down in this house. At 26, Danielle has become her father's keeper. There is no one else: Her mom and dad split when she was a child and her father has no partner, her brother travels for school and work, a half-sister from another relationship is too young to help. So she finds herself in a role reversal. It's something many people with aging parents face, although less often with a four-year-old at home and rarely on her side of 30. Jay Boppre is only 56, an unusually young victim of an "old person's" disease.

Images of Jay Boppre and with some of his family members and caregivers at his daughter's home outside in Kamloops, B.C. on July 1, 2010.

Danielle pays her dad's bills and organizes his care. She takes him to the bathroom ("Dad, the toilet's over here"), squirts the shampoo bottle for him in the shower and helps him with his pants in morning. ("Right foot in the hole. There you go, Dad. That's it.") When they go out, she sits him on the step in her laundry room and puts on his shoes - Velcro tabs, no laces now. ("No, Dad, the other foot. That's it, Dad.")

It's like having a second child in the house - Jay even occasionally calls her "mom" - except this one is returning to infancy rather than growing out of it. The dynamic is not lost on Jaelynn. She rumbles a suitcase across the kitchen floor, and Jay barks at her to stop. "You can't discipline me," she says, and carries on.

Lately, Jay seems to be "unlearning" faster, as Danielle puts it, which is typical of patients who get Alzheimer's early. It has been four years since she watched at the doctor's office as her 53-year-old father struggled to draw a clock in his memory test. Now, he doesn't know the year or the name of his dog. Answering questions, he can string together a sentence before meandering into nonsensical stammering.

How does he cope? "Day to day, Danie and my friends and good food." He jokes about his disease: "I guess I'm down the toilet bowl now."

Standing at the door, with his shoes finally on, waiting to leave for a family outing, he quips, to no one in particular: "Tailgates and dust." Danielle laughs - the line is one of her dad's old catchphrases.

Before dementia, Jay Boppre was a commercial scuba diver, a volunteer fire chief, a small-business owner who once ran several provincial parks around Kamloops, B.C., and groomed the snowmobile trails. In 1999, he was named Citizen of the Year for North Shuswap, a cottage community outside the city.

A bachelor now, he has three kids: Danielle; an older son, Kyle, who is training to be a diver; and a 12-year-old daughter, Taylor, who lives in Saskatchewan with her mother. When Jay got sick, he was living alone in a house he built near Shuswap Lake, surviving on a diet of baby carrots, chocolate and ice cream, and forgetting to close the door to his wood stove when he went to bed.

He needs company, so Danielle pays a family friend, who is a practical nurse, to stay at Jay's house with her husband and daughter. One week a month, Danielle gives her a break by bringing Jay home.

Images of Jay Boppre and with some of his family members and caregivers at his daughter's home outside in Kamloops, B.C. on July 1, 2010.

"I think it's brought us closer," she says of their new relationship. But it's awkward telling her dad that he can't ride his snowmobile any more, and she often gets impatient when he can't understand simple instructions. The parenting courses she has taken for Jaelynn have helped.

Her partner, Dan Todd, who works for his parents' lumber business and helps with Jay's care, often reminds her: "You just need to take a breath and remember that your dad doesn't understand."

Danielle says: "I am trying to teach myself that I can't teach him anything any more."

But the worst lies ahead. Danielle has to decide the next step, and she dreads seeing her father in a nursing home among patients decades older than him.

"It's going to be really hard when he doesn't remember who I am."

For now, the struggles are more basic: such as getting her father to lie in bed properly so she can turn the lights out and read to Jaelynn. Her voice carries down the hall.

"Come on, Dad," she says with weary frustration. "You've got to put your head up here, and your legs need to go here."

"Just relax."

"You've just got to listen to one word at a time. Head. On. Pillow."

"Scooch down, Dad."

"Dad. Scooch. Down."

Fifteen minutes later, Jay is lying flat on his back, his covers tucked under his arms, his head on the pillow, his eyes wide open. He looks as tired as his daughter, and a little sad.

"I love you, Dad."

"Yep," he says.

Pausing to check on him again before shutting the door, Danielle fills in the answer she knows he'd want her to hear: "I love you too, Danie."

See more from The Globe's Dementia: Confronting the Crisis series here

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