In 2006, three neurologists concur: my husband has early Alzheimer’s.
He is a man of innate elegance, dignity, a very private person, so private that one hesitates to share personal matters with an impersonal public. But Alzheimer’s does not recognize elegance, dignity, or privacy. It is the one size fits all disease: whether you are pumping gas at the local station, or sitting in the back of the limo; walking the Fifth Avenue beat, or looking down on the park from your penthouse; rocket scientist or rock and roller, fit, flabby: Alzheimer’s makes no distinction.
Yet, despite the millions afflicted, there is still something of a stigma about the label. Just as cancer used to be a diagnosis whispered in close family circles so, despite the numbers, do many think about Alzheimer’s. It is the crazy aunt or uncle locked away in the attic. The first reaction to the diagnosis is often, like mine, denial.
That is why I admire Mel Goodes. Canadian born, Queen’s University educated, the former CEO and Chairman Worldwide of Warner-Lambert, Mel was diagnosed with Alzheimer’s a few years ago. And he has gone public, speaking in many cities on behalf of the Alzheimer’s Drug Discovery Foundation (ADDF) about the disease, telling us THIS is what Alzheimer’s look like. If the Goodes family can take that public scrutiny as the disease progresses, so can we. We have to because that public pressure is necessary if we are to find a more effective treatment and/or cure for this thief called Alzheimer’s.
The numbers are staggering. Five million Americans now, with triple that number a probability when the baby boomers become senior citizens. Can society afford to lose that much brain power? The drug companies can tell us the cost of bringing a drug to market, but how do we measure the cost of not bring a drug to market? ADDF – where I am a member of The Board of Overseers– estimates that in 2012 alone Alzheimer’s will cost the U.S. economy $200 billion.
As to the personal cost, make no mistake: Alzheimer’s may be a disease of the brain but it is paid for with the currency of the heart. The child who will never know the special bond with a grandparent; sons and daughters at the height of their careers being aked to become parents to their parents; caregivers who give up their lives before their patients do; partners, forced to watch years of love and intimacy disappear, as if they never were.
Over the past few years in the middle of my night, I have found myself remembering a poem:
The night has a thousand eyes, and the heart but one –
Yet the light of a whole life dies when love is done.
Only I rewrite the last line to read, The light of a while life dies when Alzheimer’s comes.
Because, although the disease brings in its wake exhaustion and financial stress, the worst, the very worst, is watching that light that animates a human being, in someone you love, go out bit by bit.
That, and an overwhelming sense of hopelessness because so far, there is no effective treatment, no cure for Alzheimer’s.
And there are no survivors.