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: #3171278 in Books
• Published on: 1996-03-27
• Original language: English
• Number of items: 1
• Binding: Paperback
• 220 pages

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

Customer Reviews

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.

i am in marion's postion
i ordered this book when i fell upon it by accident one day. i was desperate and surfing the web searching for others going thro the same hell as me. when it arrived i devoured it in one sitting, even writing notes - "this happens to me...this doesn't...this is worse for me...this is better." it does help to know that others understand. if anything i found the title misleading, as Marion really didn't go into much detail about the joys of "jar" let alone nights, lifting and toilet. but for me she didn't need to, been there, done that.

Addressing Every Carers Nightmare
Diagnosis of MS invokes many unanswerable questions. Every carer and sufferer dreads the worst scenario that MS can bring and this book illustrates exactly how bad it can be - for both the sufferer and, unusally, the carer. In a no holds barred tale every carer prays that this will not happen to them. If nothing else this book makes you face up to the fact that it CAN happen to you but the book has helped me prepare for whatever will happen and to be a little less afraid of the future as it addresses some of the unanswerable questions I have. I found the book motivational and stimulating as it helps me (the carer) and my wife (the sufferer) appreciate how lucky we are at the moment. Currently she can walk a little and "wheel" a lot. Having read this book I realised that we currently have a very good quality of life (compared to some other MS families) which we now enjoy even more. Thank you for sharing your pain. It helped make mine a little bit easier.