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Archive for Thursday, June 17, 2004

Alzheimer’s challenges nation

June 17, 2004

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My mother has severe Alzheimer's disease. The tangles and plaques in her brain have left her unable to recognize me, her oldest child, and unable to do even the simplest activity. She must be fed like a baby. Lately, she's had difficulty walking, and sometimes I find her sitting limply in a wheelchair, staring vacantly at what only she can see, babbling a language that only she knows.

And yet I feel lucky.

I feel lucky because she lives nearby in a specially designed unit of a splendid continuing-care facility, where my father also lives. So I can visit her as I did this week, pretend that her mumblings are the stuff of conversation, watch as she waves her long, graceful fingers aimlessly in the air, kiss her cheek enough times to coax a smile -- and leave.

I almost feel guilty that I can leave. For I know how many people caring for someone with this most terrible disease do so without respite or enough support and resources, even though the caregivers are often old and frail themselves.

The vast majority of the 4 million to 6 million Americans suffering from Alzheimer's disease are cared for at home. A few, a very few, have the kind of resources that allowed Ronald Reagan to live out his life in relative safety, privacy and dignity. Most families struggle with challenges that, frankly, the outside world can barely comprehend.

If this nation genuinely wanted to honor Reagan's legacy and forthrightness about his disease, we would today commit ourselves to developing a strategy to care for the millions more who will succumb to Alzheimer's before any cure is perfected. This will require changes in attitudes and systems -- a recognition that Alzheimer's places unique stresses and demands on caregivers and that those burdens are not shared equally in a health-care universe as individualistic and inequitable as ours.

The fastest-growing segment of population is those over 85 years old, and it's estimated that 47 percent of them will develop Alzheimer's. Where will they live? If they stay at home -- and that is the best option for those in the mild and moderate stages of the disease -- will they be safe? If they must live in a nursing home or care facility, how can we ensure that they'll be treated with dignity and respect?

With its ad hoc system of child-care arrangements, tax credits, subsidies and scrambling, the American workplace has grudgingly recognized that employees need to care for their children. So, too, do we need to more aggressively support those who care for Alzheimer's patients, not only as a social good but also as an economic necessity.

Money is part of the picture, of course. Home health care workers affiliated with private agencies in New York went out on strike for two days this week, seeking to raise their wages from $7 an hour to $10. (Roughly half the agencies settled with the workers.)

Seven measly dollars to tend to adults who may not be able to speak, walk, reason, or control their bodily functions! A national caregiving strategy would figure out how to elevate and better compensate these workers, who will become ever more essential as the numbers with cognitive disease double and triple in the years ahead.

The world of Alzheimer's is like that moment just before nightfall, when all but the fireflies are shifting to darkness. There are glimmers sometimes of the voice as it used to sound, the sweetness of character, the smile. My mother may be half dead, but she is also half alive, and the soul trapped in her thwarted body deserves to be nurtured.

I am lucky, for she receives excellent care. Ronald Reagan received excellent care. May we be inspired to provide the same for the millions of average Americans who will suffer from and live with this disease.

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