Book Review

Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia

N Engl J Med 2008; 359:2403November 27, 2008

Article

Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia
By Thomas Graboys, with Peter Zheutlin. 201 pp. New York, Union Square Press, 2008. $19.95. ISBN: 978-1-4027-5341-1

Once, physician Thomas Graboys had it all — devoted patients, the best and brightest colleagues, a loving family, and a terrific physique. For the past decade, however, he has faced a succession of profound personal losses. His first wife died of cancer, and then he himself became ill — first with Parkinson's disease and then with Lewy-body dementia. This book is his story told from his own perspective, as composed by his coauthor and friend, Peter Zheutlin.

Graboys worried about the effects of his illness on his family, finances, and reputation, but he had enough family, relationships, and resources to support care at home. Most Americans with similar dependency face impoverishment and institutionalization, chaotic and impersonal services, and routine errors in treatment. Policymakers complain about Medicare's costs and Social Security's shortfalls, but they rarely recognize the inadequate supply of at-home caregivers and the inevitable reduction in retirement income, both of which are personal calamities. We do not have a plan that could mitigate these problems, especially if the economy remains weak for another decade.

Graboys and his coauthor present the hard truths of these situations, such as the distress of family members who are caregivers, the potential persistence of a fragile life beyond all predictions, the problem of finding meaning in life when one has serious dementia, the overwhelming financial burdens, and the frustrations of losing one's social role and memory. Graboys also mentions, but does not quite believe in, the possibility that family life could actually deepen its meaningfulness when members care for one another during progressive disability that eventually ends in death.

The narrative is presented as Graboys's first-person account, but the complexity and clarity of the prose show the hand of his writing partner. Readers would probably understand his situation more directly if the book included examples of actual conversations involving Graboys, showing the burden of dementia. Our society needs the perspectives that are provided by the stories in books like this, since our ability to evaluate the choices that patients and families make may be limited by our lack of experience. Graboys and his family encountered a profoundly problematic set of challenges as he lost his body movement, his medical practice, and then his memory. Exploration of his account and of other narratives of disabling and fatal illness helps our society to learn which actions in such circumstances are appropriate, which are heroic, and which are immoral.

Joanne Lynn, M.D., M.A., M.S.
Washington, DC, Department of Health, Washington, DC 20002
joanne.lynn@dc.gov