Related topics: •  Book Review: Alzheimer's Memoirs •  Book Review: Navigating the Alzheimer's Journey

The Forgetting: Alzheimer's: Portrait of an Epidemic
By David Shenk
Anchor
Paperback 304 pp $13.95

Losing My Mind: An Intimate Look at Life with Alzheimer's
By Thomas DeBaggio
Free Press
Paperback 224 pp $24

When It Gets Dark: An Enlightened Reflection on Life with Alzheimer's
By Thomas DeBaggio
Free Press
240 pp $24

Ralph Waldo Emerson and Jonathan Swift were men of formidable intelligence, both renowned for their wit and brilliance. Emerson was particularly proud of his sharp, disciplined memory and once observed, "We estimate a man by how much he remembers." It makes it all the sadder that, by the end of their lives, both Swift and Emerson had lost their minds.

Swift appears to have had a presentiment of his own mental demise, predicting years before his decline that, like a diseased elm, he would "die first at the top." Both men ended their lives in helpless silence. Emerson was ghostlike, unable to remember events that happened seconds before or to write his own name. Swift became ornery and violent before ultimately losing his ability to speak. His last words, uttered in frustration when he couldn't find the words he wanted, are heartbreaking: "I am a fool."

Emerson and Swift are assumed to have died from Alzheimer's disease, a relentless, progressive illness that robs people of their memory, reason, and, eventually, the ability to care for themselves. The last days of these great thinkers are described in The Forgetting, by David Shenk, which is considered the definitive work to date on Alzheimer's disease.

Drawing on years of careful research about Alzheimer's disease, including interviewing patients, families, doctors, and scientists, Shenk braids reportage, analysis, and personal commentary into a coherent whole that leaves the reader both educated and terrified.

After all, what fated roll of the dice might not bring up anyone's number -- yours, mine -- and place us among the 5 million Americans living with Alzheimer's? Who, also, in their 50s, 60s, or 70s can say with certainty that today's casual moments of forgetfulness ("Where'd I put my keys?") will not become tomorrow's tug on the brain's curtain as it closes into darkness? "Alzheimer's disease overtakes a person very gradually," Shenk writes, "and for a while can be indistinguishable from mild memory loss. ... The first few slips get chalked up to anxiety or a lousy night's sleep or bad cold. But how to consider these incidents of disorientation and confusion when they begin to occur with some frequency? What began as isolated incidents start to mount and soon become impossible to ignore. In fact, they are not incidents; collectively, they are signs of a degenerative condition. Your brain is under attack."

Shenk's book is elegantly written and exhaustively researched. He puts the disease into historical perspective and introduces the reader to the work of Alois Alzheimer, the physician who first discovered and named this disease. He examines the latest scientific research on causes and cures. He gives fascinating portraits of accomplished thinkers and artists who suffered from dementia, including Willem de Kooning and E.B. White. By offering snapshots of individuals in various stages of the disease -- and depicting their caregivers as well -- he makes this information come alive. The result is a powerful portrait of a ruthless enemy that sucks its victims dry before finally killing them. As Shenk observes, Alzheimer's leads to "death not by a thousand cuts but by a thousand subtractions."

Shenk's book reminds us, in case we need reminding, of the wonder of the human brain. The brain, he tells us, is "by far the most complicated system known to exist in nature or civilization. ... The brain is so ridiculously complex, in fact, that in considering it in any depth one can only reasonably wonder why it works so well so much of the time." But as we pass through our daily routines, most of us take our brains for granted most of the time, says Shenk. "Only when [the brain] begins to fail in some way, only then are we surprised, devastated, and in awe ..."

Although Shenk is clearly an intellectual enthused by the challenge of exploring what is currently acknowledged to be an unanswerable mystery, in one of the final chapters he does pass along a few bits of counsel from medical specialists on activities that might -- and a tentative "might" at that -- reduce the risk of getting the disease or delay its onset. Exercise, get plenty of sleep, avoid fatty foods, keep an eye on blood pressure, eat foods rich in antioxidants like spinach, broccoli, oranges, blueberries, strawberries, brussels sprouts, and red grapes -- and keep your mind active.

That last piece of advice, although endorsed by leading Alzheimer's researchers, borders on the loopy: "Read, discuss, debate, create, play word games, do crossword puzzles, meet new people, learn new languages." Short of evidence, are we to conclude that playing 300 games of Scrabble a year will reduce the risk of Alzheimer's? Or doing the Sunday New York Times crossword puzzle in 30 minutes means that plaques in the brain will never work their sinister effects? After all, those lost to Alzheimer's include many of the world's greatest thinkers, writers, and scientists of their day.

But this is a minor complaint about a book that is majestic in its sweep. And whether or not eating wholesomely, exercising, and keeping the mind nimble are effective deterrents against Alzheimer's, they are still choices that anyone of a rational bent ought to embrace.

Shenk himself undergoes a transformation in the course of writing the book. He tells us that when he began his research, he viewed the disease with fear and dread. As he meets numerous Alzheimer's patients and learns more about the condition, however, his perspective becomes more complex. By the end of the book he grants the disease a perverse sort of status, as much a part of the human experience as death itself. Alzheimer's, he writes, is "a condition specific to humans and as old as humanity that, like nothing else, acquaints us with life's richness by ever so gradually drawing down the curtains. ... It is more painful than many people can even imagine, but it is also perhaps the most poignant of all reminders of why and how human life is so extraordinary. It is our best lens on the meaning of loss."

In his books Losing My Mind and When it Gets Dark, author Thomas DeBaggio describes this gradual drawing down of the curtains in the stark and vivid terms of someone experiencing Alzheimer's firsthand.

DeBaggio was diagnosed with early-onset Alzheimer's in 1999 at the age of 57. A former journalist who left muckraking for farming, DeBaggio developed a successful business growing and selling herbs from his backyard in Arlington, Virginia. He describes his goal in writing a memoir as follows: "Despite the poverty of words, and a memory chewed by Alzheimer's, I intend to open my inner life and at the same time reflect on everyday simple things, as death's shadow falls across my dwindling days ..."

He eloquently describes for us what it is like to live through Shenk's "death by a thousand subtractions." DeBaggio writes, "Every morning I awake in an unfamiliar thicket of blankets with a faint recollection there was a past but I have only the faintest idea of yesterday."

At another point he describes his deterioration more specifically: "In the last three weeks, I have lost much of my ability to multiply and add numbers, especially numbers containing 7s ... Word comprehension is becoming more difficult but most of the time by studying the word I eventually recognize it. Some common words, familiar for years, seem new to me ..."

It would be interesting to know how much assistance DeBaggio received in the arranging and editing of these books. The anecdotes are often repetitive, which makes one conclude that the editing was not extensive. If that is the case, then the achievement seems all the more extraordinary, because as DeBaggio chronicles his mental decline, he achieves a genuine poetry.

At the end of the book, for example, DeBaggio takes us on a walk through his beloved greenhouse and outdoor garden, now overgrown and neglected: "Our home on Ivy Street has the look of a wild, forgotten place. Weeds wander where there were once graveled walks. In the outdoor garden bed, the once lovely, well-tended plants are besieged by uninvited growth." In the greenhouse, "dead and dying plants lie in the deep shadows under the heavy wire benches. The place is in decline as is its owner, and fresh weeds cover the pebbled earth…"

Clearly, DeBaggio's dying garden, "besieged by uninvited growth," is a metaphor for his plaque-invaded brain and vanishing mind. But he doesn't just write about his illness and decline. Both memoirs form a collage of past and present as DeBaggio describes scenes from his childhood and young adulthood, his days as a journalist, and the pleasure he used to take in working the land. His painful awareness and charting of his own decline lend every anecdote the evanescence of a lovely soap bubble, for we know, as he does, that soon these memories and the mind that produced them will no longer exist.

DeBaggio seems to be writing as much for himself as for the reader, and it is clear that the writing helps him cling to the self that he sees rapidly slipping away. But as impressive as DeBaggio's work is, one questions the wisdom of publishing a second volume, given that many of the sentiments and observations are the same in both books. DeBaggio writes -- and often overwrites -- with deep emotion, which makes for powerful prose but works best in smaller doses.

In the scheme of things, however, this feels like quibbling, given the feat DeBaggio has accomplished in writing a beautiful and moving account of what it means to be living --and dying -- with Alzheimer's disease.

These are not comforting books. Rather, they take us by the scruff of the neck and place us face-to-face with this disease, whether we want to be there or not. But both authors accomplish this while maintaining a sense of hope for the future and a renewed respect for our fragile human enterprise, which manages to somehow carry on -- despite ravages from without and within.

-- Connie Matthiessen is a former staff writer for the Center for Investigative Reporting who has written widely on health and medical issues. Colman McCarthy, a former Washington Post columnist, directs the Center for Teaching Peace in Washington, D.C., and is the author of five books on social justice.

Last updated February 25, 2009
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