Family

Alzheimer’s is called the ‘family disease.’ How to address the issues in your personal Alzheimer’s circle.

Lost in thought: The long goodbye

Lost in thought: The long goodbye

by JOAN WALTERS

First, it was small things going strangely wrong.

Steve Rayner came home one day and told his wife he hadn’t been able to figure out which coins to give the server for his large, cream-only coffee at Tim Hortons.

Occasionally, he was confused at work, especially while doing simple math, although he’d been good at numbers all his life.

Sometimes, Steve could not translate the hands on a clock into the correct time.

I would be lying if I said I wasn’t scared, not for me but for my family. I do not want to be a burden.

Normally outgoing, Steve became subdued. From time to time, he broke down in tears.

He was in his late 50s, healthy and fit. Tall and rangy, he played basketball, bowled in a league and golfed with buddies. The changes were puzzling.

The Rayner family doctor thought Steve was stressed and depressed. He prescribed antidepressants. Steve went on leave from work.

Then one afternoon, Steve was left in charge of his infant grandson. Told by his wife and daughter to feed the four-month-old at specific intervals, and to record the times, Steve instead gave the baby a bottle every time his grandson cried.

He wrote down nothing.

All afternoon, he fed and re-fed the screaming infant, strewing baby gear everywhere.

“It was a disaster,” Steve’s wife, Carol, recalls. “We had to use gripe water for the baby and calm everything down.”

Finally, in August, 2012, when Steve was 58, a neurologist diagnosed him.

Steve has early onset Alzheimer’s disease, a degenerative brain disorder that will rob him of all his cognitive abilities and cripple this physically vital man’s ability to function.

Steve’s brain will shrink dramatically, slowing or stopping nearly all its functions.

The Alzheimer’s will gradually close Steve off from every reality of life and shut down his ability to care for himself. The disease will kill him.

It’s something Steve and Carol try not to think about. “I try to kind of bury it away,” Carol says. “If I think about it, it could take us over.”

Steve is at the leading edge of the 10 million Canadian baby-boomers who turn 65 in the next 20 years, bumping up the number of dementia cases as this huge population transits into senior citizenship.

The Alzheimer’s that bedevils Steve is the most common form of dementia, a group of brain disorders that will sharply rise in Canada as the majority of the baby-boomers shift into their final years.

 Ask anyone, any group of people, and chances are they’ll either know someone with dementia or are caring for someone with it.

Dementia in all its forms — and there are many — will be an exhausting, unrelenting fact of life for the millions of loved ones and caregivers attached to these disintegrating families.

In the Hamilton Niagara Haldimand Brant LHIN, just over 25,000 people past the age of 65 are living with dementia today — a count that will increase 25 per cent by 2020.

The Hamilton-Niagara area will have the third-largest prevalence of dementia in Ontario by 2020, after the Central LHIN that covers the suburban communities directly north of Toronto, and Central East, which sprawls out from Toronto to Algonquin Park.

Mary Burnett — CEO of the Alzheimer societies that serve Hamilton, Halton, Brant and Haldimand Norfolk — says the disease is already having a huge impact.

“Ask anyone, any group of people, and chances are they’ll either know someone with dementia or are caring for someone with it.”

Experts warn that concern is mounting about the ability of the Canadian health system — and the economy — to cope with dementia’s rising tide.

“Understand that dementia is probably one of our biggest health care challenges in Canada today,” says Mimi Lowi-Young, CEO at the Alzheimer Society of Canada, the umbrella agency for all types of dementia.

Yet Canada is the only developed country in the world without a national dementia strategy, a major frustration when other jurisdictions have attacked the problem forcefully.

Elsewhere, there’s money for research and integrated planning for care.

“We want action to make sure people with the disease can live with dignity and quality of life … that is really really important,” says Lowi-Young.

The Canadian society in fall 2013 released a plea for the federal government to bring together a national partnership of dementia experts, health care providers and researchers, funded as a not-for-profit organization.

“We have the best minds and the best of intentions,” Lowi-Young said in a speech at the Economic Club of Canada in Toronto.

“Yet what is missing is a fully co-ordinated response to curb costs and meet the crushing needs of families and those living with this profoundly life-altering and ultimately fatal disease.”

The long goodbye

Dementia — especially Alzheimer’s — is often called the long goodbye, or the slow funeral, so powerful is the displacement and detachment of the victim from normal, daily life.

“I find it hard not knowing what is happening to me,” Steve Rayner wrote in his journal just after being diagnosed. “I would be lying if I said I wasn’t scared, not for me but for my family. I do not want to be a burden.”

Steve/Carol Rayner

Steve’s handwritten notes reflect the shock of passage into early stage dementia, and his shattering realization of what the diagnosis means. An avid basketball player, for example, he was already beginning to see how Alzheimer’s would change his game.

“I sometimes guard the wrong person now,” he wrote. “Anyone who plays basketball will know you don’t do that.”

To his grandchildren, still very young, he wrote: “As you get older, I want you to always be good to your mother. I should be around to make sure. I love you a lot.”

Steve says today he has hope — hope that he will still be able to spend time with his grandkids, hope that his decline will be manageable for his wife, Carol, hope that perhaps there will be medical advances to help him beat what is currently an irreversible disease.

“It’s not like having cancer,” he says in an interview. “The quality of life I’m going to have is going to be OK for me.”

Steve’s life has already changed dramatically in fundamental ways.

He is prohibited from driving. He is no longer allowed to be alone with his grandchildren. He uses a pre-paid coffee card when he goes to Tim Hortons. And his memory is fading noticeably.

Carol needs to remind him every day to perform even the most normal functions, such as shaving and eating lunch. Otherwise, he forgets.

Steve is confident he’d be worse without his Aricept, a drug commonly prescribed at Alzheimer’s early stages. It’s given in expectation that it may slow the disease by boosting brain function.

Part of a class of drugs called cholinesterase inhibitors, Aricept is designed to increase the level of the chemical messenger acetylcholine in the brain, which may help to improve thinking, memory, attention and the ability to do simple tasks.

But the drug will not stop Steve’s decline.

Despite frantic research, no easy-to-apply or cost-effective diagnostic tools exist today to find the mutated genes, mini-strokes or debilitating plaque that confirm dementia early enough to make a difference.

Evidence of anything that may help prevent dementia is scant at best, although a recent flurry of reports suggests that brain health is aided by good nutrition, exercise and mental stimulation that taxes the brain.

The power of a plan

“We really are trying to treat the disease too late,” says Dr. Barry Greenberg, a high-profile researcher who believes dementia is a scourge that could bankrupt public health care. “We’re trying to build the dam when the tsunami is already on its way.”

Greenberg believes Canada cannot cope with what is “about to become a tremendously difficult problem” without a national plan that commits significant research funding — and money for proper patient care.

The U.S. and most other western industrialized countries have plans in place.

Research into early diagnosis is critical because by the time a person has symptoms, they already have an advanced stage of the disease, says Greenberg, strategic lead for the Toronto Dementia Research Alliance, a coalition of the five memory/dementia clinics affiliated with the University of Toronto.

Disintegration of a person’s cognitive abilities — memory, language and often movement — starts long before symptoms appear.

All aging brains sputter a bit at times, and some declining memory is a normal part of aging. But it can take several years of wondering what’s wrong before a diagnostician — usually a hard-to-book geriatric specialist or neurologist — confirms the chilling fact that what’s happening is not normal.

And a swollen dementia caseload is a proven threat.

Day by day

Like many people with early onset dementia, it took almost two years for Steve Rayner to find out what was wrong.

Steve fell into the estimated 2 to 10 per cent of cases that show symptoms before 65.

In many ways, Steve’s days are not much different now than thousands of other men approaching 60. Except that within the next few years, full responsibility for his daily life will pass entirely to Carol — whether he stays at home or moves to long-term care.

Steve knows he has a death sentence from Alzheimer’s — a disease that accounts for 60 to 70 per cent of all dementia cases. The median survival time for Alzheimer’s is an estimated seven years.

He worries about the crushing weight that Carol will ultimately face but says, “We just gotta go on.”

For years, Carol happily carried the normal burdens of a working wife, juggling her full-time job responsibilities with home and family.

But since Steve’s diagnosis, she has been solely in charge of everything — from finances to supervision of her husband’s medical care, plus double the household duties, which Steve used to share.

“At first, I cried a lot,” Carol says. “In the early period, it was really scary. People were talking to me about looking to the future, doing your power of attorney, your wills, preparing to go looking for care.”

But as her understanding grew, Carol calmed and learned to cope.

“On any given day, it’s different.”

As his memory, initiative and physical stamina deteriorated, Carol also began to supervise her husband’s daily life, right down to the minute.

Sometimes it’s like I’m a little boy and she’s my mother.

“Otherwise, he doesn’t eat, or take his walk or remember to shave,” she says. “He’s always saying: ‘I forget, I forget, I forget. ‘

Each morning, over breakfast cereal and newspaper, before she leaves for work, Carol writes out a daily schedule for Steve, then checks by phone several times from work to ensure he’s following it. She tries to give him tasks that keep him moving and motivated — exactly what dementia experts say she should do.

It might be fold the laundry, mow the lawn, empty the dishwasher and go for a walk.

“Without that, he would just be comfortable to sit and watch TV.”

Steve balks at the lists.

“Sometimes it’s like I’m a little boy and she’s my mother,” Steve notes. “My manhood gets a little scarred on that.”

But in many ways, the difference in day-to-day life for Steve is not yet as dramatic as those around him will eventually find it to be.

He no longer works, but considers his days a kind of retirement. He still plays golf and basketball, albeit with some hiccups. Steve and Carol still travel as a couple, this summer for a week to an American seaside resort.

Steve can tell time digitally, so he no longer looks at the hands on a clock face for information. He can still buy his lottery ticket at the corner variety store, the clerk helps him buy the ticket and pay for it.

In fact, his large circle of friends, his wife and family — even neighbours — watch out for and take care of him round the clock.

Memory is an ongoing problem, though: “I can start out to do something and just go around the corner of a room and I forget.”

Steve once felt embarrassed by the “stupid mistakes” he would make in front of others, such as passing to the wrong side in basketball, or retrieving a stranger’s bowling ball instead of his own. Not now, though.

“I’m past that. I have a good sense of humour and I can even joke about it now.”

To connect with help for all types of dementia, call the Alzheimer Society of Hamilton Halton 905-529-7030 or 1-888-343-1017 or go to www.alzhh.ca.

More from this series:

Lost in thought: The caregiver’s burden

Joan Walters is a National Newspaper Award winner.



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