Families shouldn’t be left alone to care for Alzheimer’s victims

Posted on January 31, 2011 in Child & Family Delivery System

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NationalPost.com – fullcomment/canada
January 31, 2011.   Matt Gurney

Tasha Kheiriddin’s honest description of watching Alzheimer’s disease slowly take her father (When Alzheimer’s Hits Home, Jan. 18) would be recognizable to anyone who’s lost someone to the disease, as I recently did. It’s a particularly cruel way to lose someone you love. You have to let go of them twice: The first time on the dreaded day when they stop recognizing you, and later on, when even the comfort of a familiar face and voice is lost forever, as well.

While Kheiriddin’s piece was a personal reflection of her own private loss, it couldn’t have been more timely. The very day before it ran, an unidentified 66-year-old woman believed to be suffering from dementia walked out of her home into -27 C weather. A newspaper-delivery woman making her pre-dawn rounds found her body several hours later. Attempts to perform CPR proved impossible. She had frozen solid.

This is the nightmare of families of those suffering from Alzheimer’s, and it takes a huge toll on the caregivers trying to keep these tormented victims safe from themselves. The loved ones of the sufferers, often elderly themselves, are not only on duty all day, but also all night, sleeping lightly, praying they’ll wake up if their husband or wife or parent gets up and walks out.

Families caring for victims with Alzheimer’s need help. It is not feasible to leave them alone to care for confused, but often physically robust, people who sometimes react violently to well-intentioned efforts to protect them from their own disorientation. But it is very difficult to get help. In Ontario, it takes an average of six months to place a relative into a care facility. That time is reduced to somewhat less than two months if they are sent by a hospital, but can be as long as two to four years where service levels are low or when family insists on placing their relative into a care facility proximate to the family. These lag times are unacceptable, especially given how rapidly Alzheimer’s can progress. (Private beds can secured with greater ease, but at a cost that can quickly wipe out the savings of even affluent retirees.)

And there are also social issues. Many segments of Canada’s ethnic mosaic place a high value on respecting their elders, which can make it difficult for them to admit to others that their relative’s mental faculties are fading. There are also language barriers that can make diagnosis and treatment difficult (there have been suggestions that that played a role in the tragedy in Toronto). There is also ignorance of the realities of Alzheimer’s both in the public and in the government services that will find themselves on the front lines of dealing with the victims.

The most disgusting recent example of that was brought to us courtesy of the Winnipeg Police Force last fall. A resident of that city, Rose McLeod, telephoned the police after her husband Joe, suffering from Alzheimer’s and disoriented and angry, shoved her to the ground. This is a brutal, but relatively common, result of the disease: When confronted by unfamiliar people trying to prevent them from leaving the house, many Alzheimer’s victims — understandably — feel threatened and attack. When the police arrived, rather than taking the poor man to a medical facility, they charged him with assault and jailed him. Joe McLeod stayed in a holding cell for almost five weeks before the courts released him into the care of a local nursing home (the assault charge was eventually dismissed).

These recent tragedies are just the beginning. There are an estimated half-million Canadians suffering from the disease today, but improved life expectancies and an aging population will see that number more than double over the next generation. This will place exponentially increasing burdens on both families and the health-care system, as an increasingly elderly population loses the ability to care for their own family members. The annual economic costs are projected by the Alzheimer’s Society of Canada to reach a staggering $150-billion by 2038, when nearly 3% of the population will likely be afflicted.

But the true cost cannot be measured in dollars and cents. Alzheimer’s is a disease that utterly destroys its victims personalities, leaving them bewildered wisps of their former selves, with nothing to look forward but a slow slide into incontinence, immobility and ultimately, a sad, pathetic death. And that doesn’t account for the suffering of the families, who have to watch this slow process helpless to do anything, forgotten by their spouse or parent, and must sometimes even defend themselves against their relative’s confused attacks. When death finally comes, grief battles against the guilt at the relief that’s felt.

The miracles of modern medicine have enabled our bodies to live past what is, for many, the mind’s best-before date. And they may yet provide a cure. But until that day, our society must steel itself for the wave of Alzheimer’s and dementia that is our future, and put in place the long-term care facilities and community support programs necessary to confront it. It won’t be cheap. But to do otherwise is unconscionable.

National Post

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