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Dancing With Rose

A Strangely Beautiful Encounter With Alzheimer's Patients Provides Insights That Challenge the Way We View the Disease.

August 22, 2004|Lauren Kessler | Lauren Kessler last wrote for the magazine about the Coast Starlight train. She directs the graduate program in literary nonfiction at the University of Oregon. Her most recent book is "Clever Girl" (HarperCollins, 2003).

"I am so glad you came," Ellen says when I greet her. She is sitting at the dining table sipping juice, a slender, almost frail woman. But Ellen has presence. She has the posture of a dancer--shoulders back, neck elongated, head up--and the gaunt face of a once beautiful woman, with large milky hazel eyes and high patrician cheekbones. She smiles and reaches for my hand. "It is so nice of you to visit," she says.

Ellen is gracious and polite, but the truth is, she doesn't remember me. She doesn't remember that we've visited a half dozen times before, that a few days ago we had tea together, that just yesterday I sat on her bed for a half hour massaging her hands with rosemary mint lotion. Ellen, like the 43 others living at this residential care facility, has Alzheimer's disease. Her short-term memory is shot, and her long-term memory is quirky and dreamlike, with images that are sometimes bright and lucid, and other times so out of focus that she can hardly make them out. Her life is like a puzzle someone took apart when she wasn't looking. She can see some pieces, but she can no longer see how they fit together.

This is what Alzheimer's does: It fractures life. It erases the past. It scours the body of its remembered self. My mother Marguerite had it, and during the last year of her life, I watched her change from a pleasantly addled woman, the dotty aunt who makes you laugh at her occasionally inappropriate remark, to a person who forgot how to chew. This is a grim, dreadful and devastating disease. I know that from personal experience, and I know it because it's what I read--what we all read--about this illness, from the heart-wrenching memoirs about loss to the clinical reports about irreversible brain plaques.

What we learn from medical science is just enough to terrify us. We are told that Alzheimer's is a slow, unstoppable, degenerative brain disease--unstoppable being the operative word. After many years of hard work and many millions of dollars of funding, researchers have plotted the changes in the brain of a person with Alzheimer's--the buildup of insoluble protein deposits in the spaces between nerve cells (plaques), the snarling of twisted protein within the nerve cell (tangles).

Their research has shown that these plaques and tangles first damage areas of the brain that control memory, language and reasoning, and then spread to areas that control sensory processing and conscious thought. They have found that in the final stages of Alzheimer's--which may come as soon as a few years after the first symptoms appear or as much as 20 years later--the plaques and tangles are so widespread and the damage so severe that the brain cannot handle the simplest of functions. They have precise brain scans to prove it, detailed images of shrunken cerebral cortexes, shriveled hippocampuses and enlarged ventricles.

What they don't have is answers to the questions we care about: What causes these changes? Why do some people get Alzheimer's while others do not? How can the disease be stopped or, better yet, cured or even prevented? Without these answers, Alzheimer's remains a frightening kind of disease: an epidemic with no known cause and no known cure. No wonder we're terrified. Even the upbeat Alzheimer's Assn., which for 20-plus years has been championing the cause with thoughtful, consoling material directed to the families of those with the disease, calls the Alzheimer's journey "long, painful and exhausting."

Last night I watched a rerun of a two-hour PBS documentary called "The Forgetting: A Portrait of Alzheimer's." The portrait was unremittingly bleak. Alzheimer's "closes the curtains on a person's life," the narrator said. It is "existentially terrifying" and "relentlessly destructive." It "robs you of who you are."

But I wonder: Is Ellen nobody? How about the others who live in this home?

Questions like these have haunted me since I stumbled through that last year with my mother. Clearly she wasn't living the life I knew, the life we shared. Did that mean she wasn't living a life at all?

This morning Ellen is out with the others in the large, sunny common area that serves as a combination living room, dining room and den for this section of the facility. Here these sections are known as "neighborhoods." Each has 14 private rooms surrounding a sky-lit open area, and each, despite identical soothing color schemes and homey furnishings, manages to have its own personality. Ellen lives in neighborhood 3, which is home to the highest functioning. They can still dress themselves and eat unaided. They can still talk.

"And where do you work?" Ellen asks me, as if we'd just been introduced. I tell her. "Ah," she says. "My husband . . . he used to . . . he doesn't . . . ." It is getting harder for her to find the right words. She looks at me expectantly, as if I might finish her thought. I smile and nod, pretending that she has just said something I understand. She smiles back. "It's so nice of you to visit," she says.

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