CANADA: For the grace of God, go I

OTTAWA, Canada (Ottawa Citizen),March 10, 2008: Bruce McLeod is all heart and soul. It's his mind that's failing. The former executive's life is caught in a hopeless loop of premature dementia. Yet even as he loses himself, he's determined to help others By Shelley Page, The Ottawa Citizen Sunday, March 09, 2008 What day? What day? What day? Urgent and anxious, Bruce McLeod calls out at daybreak, sometimes as early as 4 a.m., when his wife, Mary, shushes him so she can get a bit more sleep. It's a question he will ask dozens -- if not hundreds -- of times throughout the day. "It's Wednesday, Bruce. Wednesday," she says patiently one recent morning, pouring a coffee after a restless night. She will remind him as often as he asks. "WEDNESDAY" -- it's written on the white board in the kitchen of their sprawling bungalow in Riverside South. Since the former Canada Steamship Lines executive and Deacon in the Catholic church was diagnosed with frontotemporal dementia in 2001, his wife has learned to guide him patiently through strict routines that provide order to his jumbled mind. The illness, known as FTD, has been called Alzheimer's in reverse. There are no known causes, treatments or cure. First, the illness steals an individual's social and behavioural skills. Memory is the last to go. Bruce is stuck in a hopeless loop of forgetting as his mind succumbs to the final stages of an illness that has been known to strike a patient as young as 21, but usually hits people in their 40s, 50s and 60s. __________________________________________________________ Seniors World Chronicle adds: An Overview of Frontotemporal Dementia Frontotemporal Dementias — An Overview Frontotemporal Dementia (FTD) is a group of related conditions that share many clinical features and all result from progressive degeneration of the anterior temporal and frontal lobes of the brain. These areas of the brain are associated with decision-making and control of behavior (frontal lobe) and emotion and language (temporal lobe). The hallmark of FTD is a gradual, progressive decline in behavior and/or language. Patients may suffer from a decline in one or both of these areas, but they are always characterized by a gradual onset at a relatively young age, and a continuing decline after onset. As the disease progresses, these deficits cause significant impairment in social and/or occupational functioning and result in an increasing dependency on caregivers. Visit The Association For Frontotemporal Dementias site __________________________________________________________ Bruce has become a kind and gentle babbling child. He approaches loved ones and strangers, grabbing their hands and holding tight. What day? What day? What day? The routines of each day are signposts to and from his former life as a businessman who also ministered to street people. This day, Bruce wears his Rebel with a Cause T-shirt, emblazoned with Jesus on the cross. Every Wednesday, he attends the Jericho Road drop-in at St. Paul's Eastern United Church on the edge of Byward Market. He used to go to meet with street people, addicts and recently released convicts. Now incapable of conversation, he still attends, always in his Rebel T-shirt, now threadbare. Rebel rebel rebel, he repeats on Wednesdays. Mary says the drop-in gives Bruce a sense of importance. "Soon he'll have to go in a wheelchair. I hope they just let him go until he fades away. He'd be crushed, somewhere inside, if they didn't want him anymore." Since his diagnosis, Bruce has struggled to understand his worth. Now that he can barely express himself, Mary is left to interpret his needs while helping him find a way to contribute to the worlds he long inhabited. She, too, struggles to care for a dementia patient who is much younger than most. Elderly dementia patients frequently end up in nursing homes in the final stages of their illness, and life, in large part because their aged partners don't have the energy to provide care. Mary is convinced she has the tenacity to keep her husband of 43 years at home, but needs more support from the health system. "I absolutely want to keep him here," she says, "but I need more help." At times she is overwhelmed by the difficulties of caring for a man who is like a large and wandering child. On occasion she leaves notes that read, "I need a break from your illness. Not you." Then she meets a friend for coffee, or goes for a drive alone to have a little cry. Artifacts of a Former Life Reassured that it is Wednesday, Bruce slides a Palm Pilot from the leather pouch around his neck. He opens then closes it, opens then closes it. He struggles to decipher the date. The gadget used to run his life, now he can't grasp its use. He frets when it is misplaced, which is often. Once back in its holster, his mind turns to another artifact of his former life. Wallet? Wallet? Wallet? He says this in a garbled, frantic tone that only Mary, and others close to him, understands. She pats the pocket of his pant leg. He grasps for his wallet, opening it to find several credit cards -- all expired and placed there by Mary, along with a $10 bill. As soon as he puts the wallet back, he forgets where it is. Wallet? Wallet? Wallet? His family recently bought him five identical brown leather wallets, anticipating their inevitable loss. FTD is the second most common form of dementia among people under 65, making up about 25 per cent of cases. It's estimated as many as 15,000 Canadians who suffer from dementia may have FTD, though it is misdiagnosed frequently. The cause is unknown and there is no cure, but about half of the cases are thought to be hereditary. It's hallmark is a gradual, progressive decline in verbal skills and increasingly inappropriate social behaviour (swearing, overeating or drinking, impulsivity, shoplifting, hypersexual behavior) and a deterioration in personal hygiene. As nerve cells in the frontal and temporal lobes shrink and die, patients lose self-awareness and display little insight into how their behaviour affects family or friends. Patients may display repetitive behaviours -- walking to the same place day after day, hand clapping, or humming the same song repeatedly, just as Bruce plays Amazing Grace over and over. Many of those diagnosed with FTD have young children, or are in the prime of their career. Dementia probably struck Bruce when he was 57 or 58, although it wasn't diagnosed until he was 59. He'd finished work with Canada Steamship Lines in Singapore and had just accepted a job in Ottawa as president of the Cement Association of Canada. Mary, a family therapist, didn't notice anything amiss until he got fired. "When I look back, he probably hadn't been doing his job." She recalls visiting his office and finding a stack of untouched documents on his desk. He was usually so efficient. A week later, she noticed the same stack stashed in an office cupboard. During an out-of-town conference, she observed the vice-president of the association attend important meetings, leaving Bruce on the fringes. In the wake of his firing, earlier erratic investments and ill-thought out purchases took on a new light. He'd poured $225,000 of their retirement savings into a bad investment with barely a second thought. He'd purchased seven time shares in Mexico. The day after Bruce lost his job, Mary insisted he get a CATscan. It revealed a shrinkage in the frontal lobe of the brain. He was first told he had Alzheimer's, then frontotemporal dementia and finally, Primary Progressive Aphasia, one of a handful of variations of FTD. The neurologist gave Bruce about seven years to live. Mary wanted to understand how the illness was affecting her husband's mind. In 1992, when she was studying toward her Masters of Education, she practised by giving Bruce an intelligence test. She still had his results. She gave him the test again. In some areas where he had previously scored in the 97th percentile, he'd dropped as low as the fifth and 15th percentile. Once a master of interpersonal skills, he was unable to read nonverbal cues. It didn't matter if someone was happy or sad, he just didn't notice. His memory was still intact, but he fretted about how to contribute despite his illness. Archbishop Marcel Gervais said he would ordain Bruce as a Deacon, even if he had only a short time to perform his duties. For a time after he was ordained in 2003, Bruce was able to do sermons. He also married one couple -- his son and daughter-in-law -- and baptized a baby. He was a beautiful writer, crafting his homilies with care. Eventually, though, Mary would type them out and include cues to PAUSE or TAKE A BREATH and LOOK UP. His voice became monotone. He could no longer focus. He gave his last sermon in February 2006. The Guardian of Lost Souls Beacon Deacon Beacon Deacon These words frequently punctuate Bruce's conversation, the meaningful punchline to a question he once asked about his worth. Should he should continue to walk the streets of downtown Ottawa, offering socks and sweaters and kindness to lost souls? Was he making a meaningful difference? He raised the question one night at a gathering of street people. "I thank God for you, Bruce," one man answered. "You're not just my Deacon, you're my beacon." Beacon Deacon Beacon Deacon It was all the encouragement he needed. Even as his ability to interact began to fail, he continued to reach out. Another deacon, John Kennedy, took Bruce out five hours each week -- rain or shine -- to support him as he ministered to street people, while also making sure he didn't dash into traffic. But soon Bruce was crowding strangers and make rambling, confusing comments. He eventually stopped visiting the streets, talking with the homeless. Up until last year, Bruce and Mary volunteered at the Shepherds of Good Hope one Saturday each month. They stopped when Bruce could no longer release the buns from the tongs fast enough to satisfy the hungry homeless. Mary stood next to Bruce, poking him into action, while trying to calm the disgruntled people who couldn't understand her husband's lack of expression or slow response. At home, there are challenges. Last year, the couple realized they could no longer afford their dream home by the Ottawa River in Manotick. His earlier bad investments, in part, necessitated the move, plus they needed a bungalow. Mary hopes the move will be Bruce's last. She doesn't want him to live out his final months in a nursing home, surrounded by elderly dementia and Alzheimer's patients. She pays for the help of two nurses, and receives 15 hours of paid care from the region's Communicate Care Access Centre. Bruce is 232 pounds and 5 foot 11, so care is difficult. He needs help bathing, dressing and using the toilet. Mary argues that it would be cheaper for the government to provide her with 24-hour care than to put Bruce in a nursing home. A nurse is paid $22.50 an hour to provide in-home care. For a full day, that would cost the system $22,781 a year, less than costs of a nursing home, she argues. Throughout it all, Bruce remains calm and accepting. He believes he will soon see Jesus. When he could still utter full sentences, he used to say, "Thank you Lord for Mary's patience." Mary wants their days together to be spent living, not waiting for Bruce to die. Mary held a "Celebration of Life" for Bruce two years ago. It was done at the suggestion of the Alzheimer Society of Ottawa. Friends gave tributes to Bruce. After each, a selection was read from his spiritual writings of the past 34 years. Mary has bound these reflections into the "Book of Bruce." She also tries to steep each day in meaning. Monday nights are "date" nights. They drive 44 kilometres to get a low gas price and an additional .6 cents off in "bonus bucks." They take a large circular route that includes a dozen gas stations, in order to congratulate themselves on the lowest price. "I have become an expert on remembering what price gas was," she told friends in a recent Christmas letter. They complete their date and spend the cents saved on gas at Starbucks with a decaf Americano for Mary and a chocolate dessert for Bruce. This costs $6.10. "The whole excursion doesn't make sense financially, but we have a sweet time together." Tuesday mornings are devoted to "cuddle" time, then Bruce goes to a day-away program to give Mary a break. On Friday nights, they browse in Salem Books on Merivale Road, then go out for souvlaki. Bruce always holds the restaurant owner's hand. What church? What church? "Greek Orthodox, my man," is always the reply. Bruce has been asking this question for about six months. It's the remains of a story about how he is a small-c Catholic and a Big-C Christian. He used to tell people that denomination doesn't matter, only that one is Christian. Timbits and the meaning of life The door of the red van opens and out bounds Bruce, heading to the front door of St. Paul's Eastern United Church. He's carrying a box of Timbits. He is trailed by his personal support worker and driver, Darryl Condly. Inside the church, Jericho Road meets each Wednesday. Wednesday Wednesday Wednesday It's a drop-in offering supper and spiritual support for street people and those fresh out of jail. Before Bruce got sick, he would minister to the homeless and the hurting. On this evening, he plows into the centre of all the people, opens the box of Timbits and starts to shove five or six into his mouth. It's compulsive behaviour. He's storing food like a chipmunk. Condly stands nearby to make sure Bruce doesn't choke, but is careful not to cramp his style. It's no longer clear what Bruce thinks or feels, but on these evenings it's obvious he feels he has something to contribute. After he's had his fill, he walks from person to person, handing them a Timbit or else grabbing their hand and holding it. What church? What church? Those who know Bruce pat his back and answer. Strangers brush him off or stare in bewilderment, having no idea what he is saying or what he wants. What church? He circles the room once or twice, then seems to get lost and scans for Condly. He ambles toward his nurse and plunks down. When Bruce realizes he's lost his Timbits, he goes searching the tables for the box. Condly has worked with Bruce for two-and-a-half years and has witnessed a steep mental decline. Once they had conversations, now Condly struggles to interpret the mumbles. He estimates Bruce's mind has been stuck on replay for about six months, relentlessly posing the same handful of questions. Condly also takes Bruce to the gym each day. Now, it's for only 15 minutes. Bruce sits on a few machines and goes through the motions, but doesn't exercise. But routine is everything. When Wednesday night comes to a close, Condly will load Bruce back into the van and they will go get gas, whether they need it or not. Condly will then shepherd Bruce home to Mary, who will tuck her husband into bed, hoping for several hours of sleep before the inevitable question comes. What day? What day? What day? And her inevitable response. "It's Thursday. Now sleep awhile longer." Holding on when all seems lost Terry O'Connor was a talented, talkative and outgoing public servant, professional photographer and recreational pilot until he was stricken mute and expressionless by frontotemporal dementia. As the disease progressed, he lost all that he loved: taking photos, flying a plane, working at the CRTC. He spent his final months confined to a nursing home bed. Unable to care for himself, he was fed by a tube. He died at age 61. The O'Connors had never heard of frontotemporal dementia until 2000 when they learned the diagnosis. FTD usually strikes people, like Terry, in their prime, though it is often undiagnosed or mistaken for Alzheimer's, a disease that usually affects elderly people. Louise retired from a 25-year high school teaching and counselling career to care for Terry. She learned quickly that those with "young person's dementias" have unique problems, ranging from inaccurate diagnosis to financial difficulties to the need for special facilities, distinct from those with Alzheimer's. Louise has become a leader in educating people about the disease, chairing the Advocacy Committee of the Philadelphia-based Association for Frontotemporal Dementias. She believes Terry showed signs of the disorder as early as 1998 when he started sleeping more than usual. His eyes no longer sparkled and his writing became very small and hard to read. He was obsessed with food. Doctors thought he was depressed, a typical early and wrong diagnosis for the condition. By 1999, he could no longer work as a senior analyst at the Canadian Radio-Television and Telecommunications Commission. In 2001, Terry lost his mobility, first relying on a cane, then a walker, and finally a wheelchair. Because of cuts at the Community Care Access Centre, Louise could only obtain three hours of government-paid home care. She placed him at St. Patrick's Home and used her savings to pay for physio, occupational, massage and speech therapists. The efforts improved the quality of his life, but didn't halt the illness. In July 2004, he was transferred to St. Vincent's Hospital where he died a month later. After her husband was diagnosed, Louise sought help from others in the same situation. In 2001, she helped found a support group for friends and family of residents in long-term care. She has advocated for a similar group for caregivers of individuals with early onset dementia. She continues to lobby for support for sufferers and family members. "If you know a family struggling with FTD, please support them," she says. "They need angels in their lives." See original report © The Ottawa Citizen 2008