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Brian’s choice: What happens when a man with Huntington’s disease decides he wants to roll the dice on life?

Brian Teske gets a helping hand from his wife Lynn at meal time at the long-term care facility he stays at.

Kevin Van Paassen/The Globe and Mail

Brian Teske sits in his wheelchair in a corner of the large dining room, wearing a blue polo shirt, black trousers and a waist-length apron. His wife, Lynn, spots me in the doorway and waves me over to join them at the table where she is spoon-feeding him dinner.

They met as teenagers at a high school dance in Orangeville, Ont., in 1975. Nobody knew back then that Brian's father, who had died at 42 of testicular cancer, carried the Huntington's gene, a hereditary defect that combines elements of Alzheimer's, Parkinson's and schizophrenia.

Brian was the first of the six Teske children to show symptoms, but eventually two younger sisters also tested positive. One of them, Kim, died a year ago, just before her 53rd birthday, after refusing food and water until her heart finally stopped beating. "I don't want to end up in an institution like Brian," she told me repeatedly before she began her fast. It took 12 days. Her choice was terrible, but her family supported her right to die before the neo-degenerative disease robbed her of her personality, independence and dignity.

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Six months later, the Supreme Court of Canada ruled that the Criminal Code prohibitions against physician-assisted death were unconstitutional for a competent adult suffering intolerably from an "irremediable medical condition." The ruling was suspended for a year to give the federal government time to draft legislation. So far, there has been nothing but silence, so people such as Brian continue to face horrific end-of-life choices.

He has already refused to have a feeding tube inserted when he can no longer eat even pureed food. Will he choke to death or follow Kim's lead and starve to death? Nobody knows for sure, probably not even Brian, but his wife says, it will "be his decision" when the time comes. Although, "anything would be better," she said in an interview, "than watching his face turn grey and his lips blue while he struggles to catch a breath." She's seen him almost choke to death a few times now.

He is still handsome at 57, with a shock of dark hair and sparkling hazel eyes. He comprehends everything, swivelling his head to follow conversations, but he can no longer walk, talk fluently, or feed, dress and bathe himself – never mind "wipe his own bum."

Ask him what he thinks of his sister Kim and he blurts: "Mad at her." Is he angry because she has escaped the fate that likely awaits him – choking to death or, if he is lucky, pneumonia from a chunk of aspirated food causing an infection in his lungs? Such philosophical niceties are beyond his ability to discuss.

Like many at risk for this cruel disease, Brian hadn't wanted to know its characteristics, its progress and, least of all, its prognosis (death comes from 15 to 25 years after diagnosis, according to the Huntington's Society of Canada.) As with Kim, Brian insisted he didn't want to live in an institution. But the disease got ahead of him; he became too disabled to commit suicide and he couldn't find anybody to help him end his life.

Besides, he had a wife, children and grandchildren to keep him going – he dotes on the children his daughter Sarah had after testing negative for Huntington's. Lynn kept him at home as long as she could with help from family and homecare services. When Brian's balance became wonky, she set up a hospital bed in the kitchen, but getting him to the bathroom on the second floor became increasingly treacherous – a couple of times they both fell down the stairs. Late in October, 2012, she moved him into Peel Manor in Brampton, Ont.

Lynn now comes five days a week after work, bringing him an iced coffee to sip through a straw while she feeds him dinner. Tonight, it is minced pork chops, carrots and boiled potatoes with gravy, but soon it will be pureed baby food. His place is set with toddler-sized cutlery, should he wish to try to pick them up in his gnarled hands, but he is content to have her feed him, mushing the food and then touching the spoon to her own mouth to test the temperature before offering it to him. All the while, she chats to him or to other residents until suddenly he shakes his head, purses his lips and blurts: "Full."

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After dinner, we settle in one of the ground-floor reception rooms overlooking gardens that might turn green if the weather warms up. She insists that spending time with her husband is all she wants to do because she loves him just as much today as when she first met him nearly 40 years ago – maybe more, "as we have grown and matured."

Brian's sisters, Dawn and Marlene, cover the other two evenings, often accompanied by his mother. Recently, his sister Dawn Bailie brought the Kevin Costner baseball film Field of Dreams to watch after dinner. "Chick flick," Brian barks when I ask how he had liked it.

"How long have you been here?" I ask.

"Too long."

Lynn touches his arm and he swivels his head to look at her. "Now, Brian," she says, locking eyes with him, "we are all doing the best we can." That seems to calm him.

He's had a good day, including being hoisted into a tub for his weekly bath. "He loves sitting in hot water," Lynn says while her husband nods with what I think is pleasure. He's looking forward to a hockey game between his favourites, the Montreal Canadiens, and rivals, the Ottawa Senators, this evening. "Why aren't you a Leafs fan?" I ask. He grimaces and barks: "Gilmour." I am befuddled until Lynn explains that her husband turned against the Maple Leafs after they traded their star centre in 1997 – about the time Brian was tested for Huntington's, but long before he agreed to find out the results.

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Back then, he had his own construction company and they were living a busy life full of plans and kids, including indulging his love of cars. On a holiday in 1992, they bought a powerful and rare 1965 Ford Galaxie 500 427 R-code in Loveland, Colo., hitched it to a trailer behind their pick-up truck and brought it across the border. Brian always intended to get it running, but money woes, largely caused by the onset of Huntington's, intervened. A few years ago, Lynn saved up enough from her salary to hire a mechanic to finish the job as a surprise for Brian.

Last August, she "tricked him" into thinking he was coming home for a respite visit from the nursing home to celebrate their 37th wedding anniversary. She hoisted him into her car and drove to their daughter Sarah's house, ostensibly for a barbecue. As Lynn parked on the side of the driveway, Sarah drove out of the garage behind the wheel of the spruced-up vintage car. They manoeuvred Brian into the front seat, picked up Dawn and Brian's mother Gwen, and tooled around the neighbourhood like characters from American Graffiti.

Such moments, captured in a fading snapshot on the wall of the bedroom Brian shares with another resident, are rare. The nursing home provides activities, but Brian mostly waits for his daily visit from his family. Lynn tries to protect him from upsetting experiences because she thinks he is losing the will to carry on. Even so, she's planning to take him to the small family gathering to mark the first anniversary of his sister's death. "I think he should be there," she says, "but I don't know how it will affect him afterward." That's her biggest worry: leaving her husband alone in the nursing home and not being there if he needs her. "That really upsets me."

Follow me on Twitter: @semartin71

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About the Author
Feature writer

Sandra Martin is a Globe columnist and the author of the award-winning book, A Good Death: Making the Most of Our Final Choices. A long-time obituary writer for The Globe, she has written the obituaries of hundreds of significant Canadians, including Pierre Berton, Jackie Burroughs, Ed Mirvish, June Callwood, Arthur Erickson, and Ken Thomson. More

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