'UNTIL YOU WITNESS IT, YOU CAN'T IMAGINE'
MICHELLE SIU/FOR THE GLOBE AND MAIL
Alzheimer's robbed Grant Crosbie of his identity; it turned his wife into a full-time caregiver. Sandra Martin chronicles one couple's harrowing, year-long quest to find the support they need
Grant Crosbie is leaning forward in a chair, his rugged profile illuminated by the filtered light through the grimy hospital window. His eyes are closed and his chin rests on the closed fist of his right hand. He could be striking a pose as Auguste Rodin's The Thinker, although what he could be pondering is impossible to divine, given his cognitive deficits and his drugged stupor. Lean, his cropped dark hair speckled with grey, he is wearing a long-sleeved T-shirt and mauve-plaid pyjama bottoms. He hasn't moved for two hours on a late November morning in 2014, except for fleeting grins and a slight nodding of his head in response to the jazz playing from the iPod in his lap. Otherwise, Mr. Crosbie is oblivious to visitors, medical staff, family and even the din from the corridor where workers are replacing the floor in the acute-care hospital in which he's been a reluctant patient for four months.
This is not the dynamic man I remember meeting in the late 1990s. Back then he was a vice-president and general manager at The Globe and Mail, ensconced in the suite of offices across the invisible editorial portcullis from the noisy, unkempt newsroom where I worked.
His wife, Karen Harrington, is as animated as he is soporific. She cuddles him, coaxes him to wake up, tries to remove his earbuds, but he resists. They make an attractive couple, but they represent our deepest fears about the future: At 71, he has an aggressive form of Alzheimer's disease; and she, a decade younger, is a full-time caregiver.
FRED LUM/THE GLOBE AND MAIL
Nobody knows why Alzheimer's stalked Mr. Crosbie and preyed on him voraciously. After years of exercise and clean living – he was once a contender for the Olympics – he could be a poster boy for all the things you should do to stave off dementia. And yet here he is, unable to be left alone for even a minute and, when in a frenzy, capable of knocking a support worker unconscious.
His family no longer wastes time on what-ifs. They have far more practical concerns, such as finding a long-term care facility that will accept someone with his unpredictable behaviour. Nearly four months earlier, desperate to cope on a holiday weekend with a normally affable man who had suddenly become violent, Ms. Harrington had brought him to the emergency department of Toronto Western Hospital. He ended up in restraints and on heavy intravenous doses of Ativan and Haldol before he was tranquil enough to be admitted for observation. She's been told he could be there for several months, even a year, at a cost to taxpayers of approximately $2,000 a day, because he needs a male support worker and there is nowhere else for him to go.
"Until you witness it, you can't imagine what this disease can do," Ms. Harrington says. "I have to try to keep a sense of humour and remember him the way he was."
A RUNAWAY TRAIN
If Mr. Crosbie, a pre-baby-boomer, can't find a spot in an appropriate long-term facility, what is going to happen when twice as many patients are straining their way through our ulcerated medical system? There were 747,000 Canadians living with Alzheimer's disease in 2011, the year that Mr. Crosbie, then 68, was diagnosed. By 2031, when the earliest baby boomers turn 85, some 1.4 million Canadians are likely be afflicted with some form of dementia. Caring for them is a crisis bearing down on us like a runaway train.
Alzheimer's patients such as Mr. Crosbie don't belong in an acute-care hospital, acknowledges Kathy Sabo, the chief executive at Toronto Western and senior vice-president of the University Health Network (UHN), a teaching, research and clinical health-care system in Toronto. They "come into hospital when families can't cope," she says. "On a given day, we have 65 to 70 patients here, and across UHN we have over 110." The length of stay can be anywhere from five days to a year, she says, with the biggest pressure coming from the rising number of people needing long-term care.
Most people don't think about hospital capacity until they are "directly and personally impacted," Ms. Sabo says. And then they shake their heads at the decrepitude of the health-care system we love to brag about. Our "illderly" universal medicare model doesn't include integrated long-term residential and home-care services. Consequently, these increasingly essential components of elder care are not automatic, not protected from user fees, and not portable from one jurisdiction to another.
The Crosbie family's ordeal is a cautionary tale. They were caught flat-footed because Mr. Crosbie's cognitive decline struck early and progressed so rapidly that neither they nor the system had time to prepare. But there's a hidden bonus in his catastrophe: His wife is active and devoted, able to be a full-time caregiver and advocate.
About 70 per cent of family caregivers for Alzheimer's disease are women, but women are also 72-per-cent more likely than men to succumb to the disease, mainly because they live longer. Some scientists think that they have been traditionally more susceptible to the disease because they took care of others instead of straining their brains in higher education and competitive work environments. Others say it is estrogen-based. Nobody knows for sure.
Here's the truly scary part. Rather than providing care, many women will need it at the very moment when fewer people are having children and living in traditional family units. The 2011 census revealed that close to 28 per cent of Canadians live alone, a number that has more than doubled since 1971.
Finding flexible, cost-effective, caring solutions as the baby boom reaches its most expensive health-care years is a complex business. Building warehouses for seniors, only to shutter them (as we are doing with schools) after the boomers barge their demographic way through old age and death, doesn't appeal to deficit-fighting provincial governments and revenue-starved health-care administrators.
Current thinking says we should "age in place" with the support of telemedicine conferencing, nurse practitioners and personal support workers (nannies for grannies) to supplement family caregivers until it all becomes too much. Then we will either shuffle off this mortal coil or be transported to a high-level facility designed to cope with extreme behavioural issues or complicated physical needs – or both. The problems are clear, but finding the political will to finance the right answers is almost as perplexing as discovering a cure for Alzheimer's.
NEEDED: ELITE REGIONAL FACILITIES
Dementia has had its share of celebrity victims, including actor Rita Hayworth, U.S. president Ronald Reagan, writer Iris Murdoch and artist Willem De Kooning. Alas, Alzheimer's has never attracted the same kind of funding as breast cancer or heart disease, although the medical and pharmacological strides in treating those diseases mean that more of us are living long enough to suffer the ravages of cognitive and neurological disorders.
The disease is named after a German doctor named Alois Alzheimer. In 1901, he observed a patient named Auguste Deter, 51, in the Frankfurt Asylum. She was confused, extremely forgetful and paranoid. Her condition disintegrated rapidly and she died five years later. In a post-mortem, Dr. Alzheimer discovered that her brain, which had fewer neurons than usual, had dark deposits (plaques) and fibrils (tangles). We now know that she had a genetic form of early-onset Alzheimer's.
Dr. Alzheimer wasn't the first to observe these abnormalities, but he was able to connect them with the aberrant behaviour and cognitive deficits of real patients. Although much more is known today, many discoveries since plaques and tangles, while initially tantalizing, have proved frustrating. For example, close to 700 nuns from the School Sisters of Notre Dame in the United States signed on in the 1990s for a long-range study of aging and dementia. "They'd have their lives measured, their minds challenged, and in the end, their brains autopsied," science writer Jay Ingram writes in The End of Memory.
One of the nuns, Sister Mary, an Energizer bunny in a habit, taught until she was 84 and continued to ace psychological tests until shortly before she died at 101. An autopsy revealed that her brain was riddled with plaques and tangles, particularly in the hippocampus and cerebral cortex, two prime areas that Alzheimer's attacks. She should have been demented – but she wasn't. That anomaly has led some scientists to speculate that cultural, intellectual and environmental factors may either protect the brain or make it more susceptible.
Laboratory research isn't enough, says Larry Chambers, scientific adviser to the Alzheimer Society of Canada. We need education and training, he says, to help patients and caregivers cope with the disease as it progresses over the typically eight-year period from diagnosis to death. That begins with public awareness and lessening societal stigma because "the more people understand this, the better prepared they will be when it happens to them." Another key is getting disparate agencies "to work both with the individual caregiver and at the organizational level" to support patients at home in the early stages and then in facilities when families can no longer cope.
"We have to raise the bar in long-term care homes and build capacity in their ability to care for people," Dr. Chambers says, by developing elite regional facilities that provide residential care, and training for health-care workers, but that also function as academic centres of research into aging – similar to acute-care teaching hospitals. At the same time, he argues, we need to improve education and compensation for personal-support workers in long-term care homes. "They are the largest group of health-care providers and they have six months or less of training to deal with the most complex people we have in our society," he says. "We don't want to put any resources into that sector and I don't think the baby boom is going to stand for it. They will want quality."
AGITATION, AND FLEETING CLARITY
In early January 2015, Mr. Crosbie is as agitated as he was somnolent six weeks before. Workers have finished replacing the floor on his unit, so the hospital is less chaotic, but something is bothering him. He is pacing in small circles like a dog in need of a walk, mumbling to himself and coughing, the remnants of a bad flu that had afflicted several patients over Christmas and kept him in isolation for a week.
Born in Chatham, Ont., on May 15, 1943, Mr. Crosbie grew up in Montreal with a younger sister, played violin in the Montreal Junior Symphony Orchestra, competed in team sports, and became a member of both the Canadian national luge and bobsled teams. He was headed to the Winter Olympics in Grenoble, France, in 1968 until he crashed and broke his ankle badly. His wife speculates he may also have suffered some incipient brain damage from rattling around the curves on superfast luge runs in the days before people took much notice of concussions and safety gear.
Gingerly, Ms. Harrington tries to calm her husband, a man used to making decisions and giving orders. She gently propels him toward his chair, but he balks; she tries to insert his earbuds so he can listen to some calming music, but he shrugs her off. She gently wipes his dripping nose, directs him to the bed, sits beside him and gives him a hug and a kiss on the cheek. Suddenly, he puts his hand on her knee, smiles and exclaims "Yahoo," as though he were an ordinary man, chuffed by a public display of affection.
Clarity is fleeting. He resumes pacing and mumbling. A few minutes later a nurse comes in with his medication mixed into a small container of apple sauce and gives it to Ms. Harrington to spoon into her husband's mouth. "Soon he will calm down," his wife says, speaking with the authority of an experienced caregiver.
FRED LUM/THE GLOBE AND MAIL
QUIETLY LOOTING THE BRAIN
The couple met at the Montreal Gazette. They married in 1985 and moved to Toronto so that he could take up a job as group publisher of trade publications in what was then the Southam newspaper chain. They quickly had two children, Renée, now 29, and Michael, 27. By the late 1990s, Mr. Crosbie was general manager of The Globe. A few years later he left during an ownership shuffle, worked for a time as a consultant, and then signed on at Now magazine as director of advertising, a position he held until he turned 65 in 2008.
By then, he was compensating for his memory lapses by taking copious notes in meetings, admitting to colleagues that otherwise he would forget what they said. That's how the disease manifests itself in the early stages, quietly looting the brain, "nerve cell by nerve cell, a burglar returning to the same house each night," writes Margaret Lock in The Alzheimer Conundrum: Entanglements of Dementia and Aging.
Lots of people over 60 forget names and dates, and fear they are heading for senility. Most aren't – at least not yet. Some researchers suggest that peanut butter provides a cheap and easy diagnostic tool, because Alzheimer's patients have a diminished sense of smell even in the early stages. By measuring how close a spoonful of peanut butter has to be held under the noses of patients with mild cognitive impairment for them to smell it, researchers can predict which ones are likely to get Alzheimer's, rather than another dementia, and begin appropriate treatment.
Theories about preventatives abound, including exercise, watching your weight, learning a second language, completing a daily crossword, playing mind games, and even dousing your food with turmeric because there is a low rate of Alzheimer's in the Indian subcontinent. All these measures are fine, but none has proved definitive in halting what Prof. Lock describes as "more severe memory loss, followed by confusion, garbled speech and movements, hallucinations, personality changes and moods that can swing from anger to anxiety to depression."
There are also warnings about triggers. In the late 1980s, a Canadian scientist with the peculiar name of Donald Crapper McLachlan tried to link aluminum saucepans with the onset of Alzheimer's, needlessly persuading many people to eliminate them from their kitchens. The most recent research points to that old bugaboo, sugar. Science writer Ingram suggests in The End of Memory that "disturbed insulin function in the brain parallels the course of the disease, appearing early and worsening as time goes on." He argues that non-genetic Alzheimer's may be a Type 3 form of diabetes and warns that "if diets laden with sugar and fat are significant risk factors for Type 2 diabetes, they would also be risk factors for Type 3." All of which sounds reasonable until you remember that fit, athletic, sugar-spurning Mr. Crosbie has a virulent non-genetic form of the disease.
True, his father, a Second World War veteran, had dementia, but the elder Mr. Crosbie was in his 90s, not his 60s, when he began to show symptoms. He died in 2011, the same year his son and daughter-in-law gave up their downtown lifestyle for what she calls "the perfect empty nester's bungalow" in Oakville, west of Toronto. Three days after they moved in, her husband was tested by a neurologist at the memory clinic at Toronto Western and diagnosed with mild cognitive impairment. Because it was "mild," that "gave us hope that we could cope with it," she says.
They went to memory workshops and strategy sessions, but Alzheimer's kept outpacing them. He never could remember his new home address or telephone number, and he soon gave up driving, cooking, reading, using the telephone and the computer, and handling their investments – serious assaults on his confidence and his autonomy.
MICHELLE SIU/FOR THE GLOBE AND MAIL
TERRIFIED BY THE UNFAMILIAR
Mr. Crosbie's illness circumscribed Ms. Harrington's life. He became agitated and demanding when she talked on the phone; if she wanted to leave the house, she had to find him a sitter and then slip away while he was distracted. "I kept him at home for two years with some assistance," she says, describing her husband's increasingly obsessive and paranoid behaviour.
Travelling, especially by plane, was impossible by 2013. Then Mr. Crosbie lost the ability to bathe and dress himself or to speak coherently. Gradually, even shopping expeditions became problematic because he loved dismantling displays, commandeering other people's shopping carts and grabbing her arm while she drove. As well, he began peeing in parks, corners of the house and wastepaper baskets – "inappropriate urination habits," as it is technically called.
Ms. Harrington applied for home care, and received her allotment of three hours a day, but she needed full-time help, which she couldn't afford when she calculated the cost over the decades it might take for her otherwise physically healthy husband to succumb to the devastating disease. She had to give up a young male volunteer because of her husband's jealousy, and a female support worker because she wasn't strong enough to cope with Mr. Crosbie's bursts of belligerence when he was thwarted. Besides, she says, "he didn't want to be with anybody but me."
Then things got worse. Late in July, 2014, Ms. Harrington booked a cottage for two weeks on Georgian Bay, north of Toronto, thinking the fresh air, lapping water and haunting call of loons would relax her husband. Instead, the unfamiliarity terrified him and she found herself alone and defenceless with a delusional man. He began tearing at towel racks and doorknobs like a prisoner trying to escape a cell. Ms. Harrington called their daughter, who came up after work on a Friday night to help. They now know he was in a frightening state of hyperdelirium.
On advice from their family doctor, the two women increased the dosage of his sedative and wrestled him into the car, although he refused to wear anything but underwear. It was the August holiday weekend, so their options were few. Either they had to call the police or they had to drive him to a hospital emergency department, the standard stopgap solution for families in a medical or psychological crisis. That's how he ended up in Toronto Western.
JANUARY – A NEW YEAR, AND NEW HOPE
Since then, Ms. Harrington has been visiting every day, feeding her husband breakfast and lunch, helping with his shower and walking with him outside – if the weather and his mood allow – and bunking down with a Toronto friend to avoid the commute from Oakville. In her spare moments, she deals with Community Care Access Centres, researching waiting lists for long-term care homes for people with special needs. It can take up to four years to secure a placement in her area, unless he can undergo assessment and successfully complete a four-month behaviour-modification program in a locked ward with high staff-to-patient ratios. Those units, where people with disruptive behaviours are assessed, treated and stabilized, are few and they, too, have waiting lists.
Her life sounds like a nightmare, but she has good news. Mr. Crosbie has jumped the queue for a spot on one of these units. It's not as grim as it sounds: Sheridan Villa in Mississauga, an easy 20-minute drive from their Oakville home, is a modern facility with recreational activities and family rooms. Mr. Crosbie's good fortune is at the cost of bad luck for others: The patients ahead of him have come down with the same flu that had flattened him over Christmas.
"Can you imagine if they had called me and I had to say, 'No, he's sick?' " she asks. "They did that to three other people."
Ms. Harrington, who had been given 48 hours to accept the offer, spent the morning touring the 19-bed unit and filling out paperwork. Patients live on the locked ward, where they are seen by geriatric psychiatrists, neurologists, physical and occupational therapists and other health-care workers for up to four months. Room and board cost $2,400 a month – about $800 more than she is paying in the hospital – but he will get more attention and services and enough behaviour-modification therapy to put him on the waiting list for a regular long-term care facility.
He's won the health-care lottery, I suggest.
"No," she corrects me. "I've won the health-care lottery. He's going tomorrow," she says, a smile creasing her mouth and lighting up her eyes. "We are over the moon."
IN EARLY APRIL, A SETBACK
Ms. Harrington's jubilation is short-lived. Transitions are difficult for most people, but they are terrifying for a patient with severe cognitive difficulties. After Mr. Crosbie arrived by ambulance at Sheridan Villa he developed pneumonia, which brought on another state of delirium – hypo this time, which made him as lethargic and immobile as he was agitated and delusional when he was admitted to Toronto Western eight months earlier.
His left side is noticeably weaker and he can't stand or walk unassisted. Whether his new deficits are the result of a small stroke, or the effects of the rampaging disease, is a mystery. He's still wearing pyjamas, blue-plaid this time; Ms. Harrington buys them because the elastic waist makes it easier to dress him than struggling with drawstrings – an Alzheimer's version of "pull-ups." He's sitting in a $5,000 purpose-built, alarmed wheelchair (most of which was paid for under his disability plan) in a custard-coloured, ground-floor private room, which is more like an upscale dormitory than a hospital. There's a large window overlooking a garden that promises to be verdant if the coldest winter in memory ever ends.
He's thinner, but calmer and more present, possibly because he has been weaned off the four anti-depressants, anti-anxiety and anti-psychotic drugs that he had been prescribed in the hospital. Now he takes nothing more than a sleeping pill at night.
"He still knows me," Ms. Harrington says proudly, as she gives her husband a hug. Human resilience is astonishing in caregivers as well as patients. He seems to have vestigial memories of his former life as an advertising executive: His ramblings often sound as though he is conducting a meeting or reporting on a business initiative. Every so often Ms. Harrington recognizes the name of a project or former colleague.
He's not going to get better. There is no cure and no treatment. "As the brain loses mass," Prof. Lock writes in The Alzheimer Conundrum, "the rest of the body gradually shuts down." The best anybody can hope for is a measure of quietude so that Mr. Crosbie can move out of the special behaviour support unit, freeing up a place for another patient, and settle into a less intensively supervised ward.
He will probably live another two to five years. As his power of attorney for health care, Ms. Harrington has long since decided against authorizing heroic measures to keep her husband alive if he develops a life-threatening illness. "Why prolong this nightmare?" a relative asked when Ms. Harrington was agonizing over the decision.
As for herself, she is making her wishes clear. "If this happens to me, I'm going to Switzerland," she says, referring to the only country that offers assisted suicide to foreigners. "I don't want my children to see me this way."
Meanwhile, now that she knows her husband is safe and getting the care he needs, she has relaxed her vigilance enough to volunteer for the Alzheimer's Society, connect with other caregivers and pick up her organizing duties as mother of the bride for her daughter's wedding next December. Her life, which has been on hold for nearly two years, may be picking up again.
FINALLY, LONG-TERM CARE
More than a year after a frantic Ms. Harrington took her husband to emergency at Toronto Western Hospital, Mr. Crosbie, now 72, has moved into a regular long-term care ward at Sheridan Villa. "They finally found an anti-convulsive drug that keeps him calm enough to move out of the special behaviour-support unit," she says in a telephone conversation.
Mr. Crosbie, who has never regained the ability to walk unaided, remains physically strong enough to resist unwelcome requests from staff. He's still affectionate to his wife, although he talks less now. He is also having trouble swallowing. As for Ms. Harrington, she is excited about a new project: raising $100,000 for a caregiver's lounge, which will be named 'The D. Grant Crosbie Family Lounge in Support of Caregivers' when the new Oakville Trafalgar Memorial Hospital opens in mid-December. Making a difference for other families dealing with the same devastating illness is probably the last thing she can do for the man she has loved for more than 30 years.
Sandra Martin is a Toronto writer and former Globe and Mail staffer. She is currently working on a book for HarperCollins about the right-to-die movement.