DRAFT: This module has unpublished changes.

Book Review:  Voris, E., Shabahangi, N., Fox, P. (2009). Conversations with Ed: Waiting for Forgetfulness: Why Are We So Afraid of Alzheimer’s Disease?

By Sally Gelardin, Ed.D.

Like women and other minority groups, people with Alzheimer’s have been marginalized in our society. Like other individuals with visible and hidden disabilities, individuals with Alzheimer’s have been diagnosed into a box and set on display to be researched, analyzed backwards and forwards, and talked “about,” rather than “with.”  A new book, Conversations with Ed:  Waiting for Forgetfulness:  Why Are We So Afraid of Alzheimer’s Disease?, provides a fresh perspective on this dreaded “disease.” Ed Voris, the real-life protagonist and co-author, is a former contractor, trained in theology and business.  Afflicted with Alsheimer’s, Voris looks upon his challenges with curiosity, rather than dread.
 
In a recent caregiver workshop at Senior Access in Marin County, Patrick Fox, MSW, PhD, a co-author of the book, and chair of the State of California’s Advisory Committee on Alzheimer’s, noted that for the first time since its 25 year existence, the Committee has reserved two seats for individuals experiencing Alzheimer’s. Throughout the book, Dr. Fox emphasizes the importance of supporting “neurological diversity” in “ways of being that can truly deepen us.” Though Mr. Voris might have short-term memory loss, Dr. Fox notes that he makes invaluable contributions to society through his generous sharing of personal experiences.
 
The third author, Nader Shabahangi, PhD, a licensed psychotherapist and businessman, trained in philosophy and psychology, offers a multicultural perspective. He asks readers to imagine living in a society where diverse expressions are not judged and where there is an absence of hierarchy and valuation.  Dr. Shabahangi points out ancient societies, such as the Greeks, who used the word  “zenos” to refer to both stranger and friend, foreigner and ally.  Dr. Shabahangi asks us to relate to individuals with Alzheimer’s with zenos, “an attitude that is welcoming to what is new, strange and/or different.”
 
Dr. Fox says that there are diverse presentations of Alzheimer’s disease.  He gives an example of two sisters who came into a specialized Alzheimer’s clinic at an academic medical center: “… if you looked at the neurocognitive testing, the sister who didn’t appear to be demented had much worse scores than the sister who appeared to be much more demented.” Dr. Fox notes that “the first compensated for what she couldn’t remember by using humor, by being gregarious, by engaging people.”
 
In the reviewer’s opinion, whether we look upon Alzheimer’s as a disease or as a challenge that needs to be managed, individuals with this disability also deserve respect.  Like all of us, they have much to contribute to their families, their communities, and to the world. Watching a loved one become forgetful and grow old can be a painful process, but if we approach this process with an open mind and open heart, rather than fear of being afflicted with it, then we can find meaning and quality in our own aging process and in our relationships with individuals who are memory challenged.
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Reviewer: Sally Gelardin, Ed.D., is author of Career & Caregiving:  Empowering the Shadow Workforce of Family Caregivers (NCDA, 2009),  and co-author of "The Emerging Workforce Caregiving Housing Dilemma (The Business Renaissance Quarterly, Summer, 2009), and "Aging in Place and Live/Work Options." Career Planning and Adult Development Journal. Volume 23, Number 4,. She started the first job club for older workers in Marin County and was co-founder of the San Francisco Spiritual Eldering Group. She interviews career and caregiving experts on Careerwell's tele-interviews, careerwell.org, and offers workshops on caregiving and aging issues, integralaging.org.

DRAFT: This module has unpublished changes.