Product Description

In 1977, at the age of 36, Jeffrey Cohen, a physicist at the University of Pennsylvania, was diagnosed with multiple sclerosis. But it wasn't until 10 years later that the 'dirty details' began, when the disease had progressed to the point where he could not transfer himself out of his wheelchair. That point is where his wife Marion begins her memoir of care giving: 'If I had to explain it in three words, those words would be 'nights,' 'lifting,' and 'toilet.' And then, if I were permitted to elaborate further, I would continue, 'nights' does not mean lying awake in fear listening for his breathing. 'Lifting' does not mean dragging him by the feet along the floor. And 'toilet' does not mean changing catheters. 'But dirty details', Marion Cohen teaches us, involves more than 'nights', 'lifting', and 'toilet'.There is the loss, anger, fear, and desperation that envelops the family. She reveals what it felt like to be consistently in 'dire straits' with no real help or understanding, what she characterizes as society's 'conspiracy of silence'. Chronicling their lives in the context of her husband's progressing disease, she discusses the raging emotions, the celebrations, the day-to-day routine, the arguments, the disappointments, and the moments of closeness.During the 15 years she cared for him at home, both continued to work on various projects, share in the rearing of their four children, and be very much in love. This powerful, honest narrative also delves into the process of making the 'nursing-home decision' and those decisions Cohen made to put her and her family's life together again. Marion Deutsche Cohen is actively involved in the Well Spouse community and has published many poems and articles on the subject and on home schooling that have appeared in such publications as the "American Poetry Review", "Disability Rag", and "Mothering". She currently teaches mathematics at Temple University.

Product Details

• Amazon Sales Rank: #1363734 in Books
• Published on: 1996-03-29
• Original language: English
• Binding: Paperback
• 220 pages

From Library Journal
Teacher/author Cohen, whose husband was disabled by progressive multiple sclerosis (MS), chronicles with raw intensity and candor the "dirty details" of caring daily for the chronically ill?i.e., "nights," "lifting," and "toilet." She elaborates: "...'nights' does not mean lying awake in fear listening for his breathing. 'Lifting' does not mean dragging him by the feet along the floor. And 'toilet' does not mean changing catheters." Cohen spares the reader nothing: endless sleep deprivation; frustration with inadequate or nonexistent support; catch-as-catch-can home care and respite services; crazy-making bureaucracy; and self-doubt, fear, and anger. Unlike the standard guides for MSers (e.g., David Carroll's Living Well with Multiple Sclerosis, LJ 5/15/93), Cohen's work offers no handy how-tos. More primal scream than primer, it is an uncommon acknowledgment of the dire straits in which well caregivers find themselves. Recommended for medical and caregiving collections.?Anne C. Tomlin, Auburn Memorial Hosp. Lib., N.Y.
Copyright 1996 Reed Business Information, Inc.

Review
"Marion and her family have done a wonderful job of showing that there is life after innocence... And while each episode is a cry for help--a proof that 'one person, one family cannot do this alone'--it is also a testimony that no matter how late in the game help arrives, it will not be too late. Her message, then, to society is: mark us 'fragile' but don't leave us for dead." --Maggie Strong, Founder, Well Spouse Foundation and author of Mainstay

From the Publisher
Caring for her disabled husband, Marion Cohen tells her story from the viewpoint of a Well Spouse

Customer Reviews

Necessary Medicine for a Well Spouse
This book is painful to read and even more painful to live. That is why it proved to be necessary medicine for this well spouse. A testament to the fact that I am not alone, I am not crazy, and there is "life after innocence." I will cling to that as I trudge this path of "chronic bereavement." For a Well Spouse, this read is a must for surviving the isolation and endless hard work imposed upon unwitting victims of devastating, chronic illness.

Thank you Marion D. Cohen, God bless you for your brutal honesty.

Exceptional and Honest Account
This exceptional experience of a person with MS and the problems of living with a well spouse are documented thoroughly here. I wouldn't say this is an optimal guide for the newly diagnosed, but it is an honest account of much of what a well spouse goes through in coping with a chronically ill spouse.

powerful and troubling look into the life of a well spouse
This book is difficult to read, but difficult to put down as well. The unimaginably difficult life of a person with severe MS is virtually ignored by his spouse as she describes her daily routine of caring for her husband. This bothered me at first, but there are other books about those who live with MS -- this book is about how this disease cripples the life of a spouse who is in perfect health. My husband has MS and I have to say, this book scared me to death. Yet it was a comfort to know there are others who understand the frustrations, guilt, and anger a well spouse experiences.