Alzheimer's Disease: A Story of Love and Loss

Oct. 22, 2010— -- Ten years after her death, it is my mother's needlework now that calls me back to her prime, to her grace, and helps me hear once again the sound of her laughter.

She had a fine hand with a needle, as they used to say. Pillowcases and canvasses, wall-hangings and purses, abstract, figurative, decorative -- so much craft and loveliness spun from her fingers as she sat under the lamplight, her glasses perched on the end of her nose, her feet tucked under her on the sofa, as the conversation of her family -- a husband of 36 years, ten children -- carried on around her.

Without missing a stitch, she'd join the conversation, offering an opinion, or sometimes a line of poetry (the Brownings were favorites). And sometimes, the steady, intricate minuet of needle and thread would cease, she'd drop her hands into her lap, throw her head back and laugh. She had a wonderful sense of humor, my mother, a rich, almost fatalistic, appreciation of life's occasional absurdities. I miss her so much.

We hardly noticed it at first. She'd stop in her needlepoint, look at her work in surprise, and say, "Where was I?" And then she'd count her way back into her place and carry on.

The interruptions grew more frequent. The counting became harder. And all that was left in her lap, under the blank gaze of Alzheimer's, was a canvass ragged with confusion, streaming threads like spilled paint or weeds grown up to choke a rose garden. The minuet stumbled, slowed, ended.

What Alzheimer's takes from a person is so precious, so profound -- it just flat breaks your heart. And yet, it is in that loss, in that suffering, that we find our calling in this cause. And I believe we find a paradoxical gift as well.

But first, let's recall for a moment the sheer scale of what we're dealing with here. More than five million Americans are living with Alzheimer's today. It is a disease that primarily strikes the old among us -- though more than 500,000 Americans with Alzheimer's and dementia were diagnosed before the age of 65.

This is one of the greatest global public-health challenges of our time. And that is why it's time to fight, to break out of the surrender that has surrounded this disease for far too long.

Racing to Find a Cure For Alzheimer's

Because there is hope. There's always hope -- we're human, that's what we do. We hope. After years of research that has sometimes seemed to be frustratingly slow, glimmers of real advances against this disease can be seen. The underpinnings and causes of Alzheimer's are beginning to be grasped. Diagnosis is improving, and can be made at earlier stages. Treatment research is proceeding by leaps and bounds -- there are more than 100 drugs being tested right now, and some scientists are even looking into the possibility of an Alzheimer's vaccine. These are exciting times in this cause.

On "Nightline," we profiled Rich Smith and his wife of 17 years, Sherry. Rich is 57, and living with Alzheimer's. After the initial shock of the diagnosis, Rich and Sherry decided to act -- to do something to fight this disease, for themselves, and for all of us.

So they decided together that Rich would volunteer for a cutting-edge clinical trial at Georgetown University Hospital: the first gene therapy for Alzheimer's.

It was a truly brave decision. Rich and Sherry are pioneers, out on the frontier of this fight. And we need a lot more like them. Every Alzheimer's researcher I meet tells me the same, surprising thing: There is a desperate shortage of people willing to volunteer for clinical trials of drugs and other therapies for Alzheimer's.

Rich and Sherry are helping to make our dream -- a world without Alzheimer's -- come true.

One more thing. I want to tell you about my brother Jay.

I have nine brothers and sisters. Jay is our oldest brother, the firstborn. Jay was my mother's primary caregiver as she slipped into the shadows of Alzheimer's (my father having died many years ago now). You know what it means to care for someone with Alzheimer's—how exhausting, how frustrating, how stressful, how sorrowful it can be. It's hard work.

Jay is a very private man. He doesn't think of himself as a hero. But he's my hero. Jay gave me something in those long and difficult years, taught me something I'd like to share with you.

Among the many challenges caregivers face in the course of this disease is the loss of dignity Alzheimer's can bring to people. My mother needed everything done for her. And her oldest son -- her firstborn child -- with a tenderness and abiding respect that exceed my capacity to describe here -- did all that.

Sometimes, people are frightened or even repelled by people with Alzheimer's -- and it can be scary and disturbing. But for Jay, my mother was until the last, as she had been for each of her ten children from the first: She was beautiful. And isn't that something the world needs to remember about all the stricken, and the dying, and the forlorn and marginal among us?

Alzheimer's Caregivers: 'A Lesson in Love'

What Jay showed me -- what he lived -- was this: To love someone is to serve them. To work for them. To give of yourself to them. And what he lived -- what all of us in this community live every day -- goes far beyond Alzheimer's.

Think of Jay -- think of all the daughters and sons, wives and husbands, friends and nurses and medical personnel who are taking care of someone with Alzheimer's somewhere in the world right now -- think of all that tenderness and respect and service and love -- and imagine for a moment. Imagine that the wide world had as much solidarity and commitment as you find every day in every family facing an Alzheimer's diagnosis.

Living with Alzheimer's, hard though it is, is a lesson in love. Here's what we know: We are all so dependent on one another. We are all caregivers. These are basic facts of human life -- facts perhaps forgotten too frequently in a society such as ours. We who have been touched by Alzheimer's just happen to know these facts a little more...acutely.

So while we fight for a world without Alzheimer's, we learn something true about life, we find a hidden gift, if you will, a grace in the midst of this terrible disease.

Even in the shadows, there is love.

The Alzheimer's Association needs volunteers to participate in the many clinical trials underway to treat and hopefully cure this disease. Click here to learn more about the clinical trials and what you can do to help.