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Member Experiences . . .

Books
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# Web Link Hits
1   Link   A Husband, A Wife, and an Illness
by Dr. William July

... nationally bestselling relationship author. I have written four books on relationships and I'm frequently on national television and radio shows shows discussing relationships and news stories. My wife, Jamey Lacy, is a former athlete, wellness expert, and speaker. We were living the American dream when she was struck with a devastating illness. As we forge our path to healing and recovery, we've discovered vital ways to live our lives beyond illness and we want to help you do the same thing.

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2   Link   An Emotional Survival Guide for Caregivers
by Barry J. Jacobs

WSA Caregiver Journey presenter and author presents this book after years of research in his psychology practice and his own experiences as a child with family caregiving.

"At night, after the patients are tucked tightly into their beds, there's a hush in the hospital hallways, and you can hear bad news coming..."
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3   Link   A Three Dog Life
by Abigail Thomas
(Reviewed by Gail Neustadt)

... is a collection of impressionistic vignettes about how the author faced fear, anger, and guilt after her husband of 13 years suffered a traumatic brain injury when hit by a car while chasing their dog.

Abigail points out according to Wikipedia, Australian Aborigines slept with their dogs for warmth on cold nights, the coldest being a “three dog night,” and this becomes the basis for her book’s title. In this beautiful memoir Abigail recounts, not only how she survived the emotional traumas universally experienced by all caregivers, but also how her eventual acceptance of “this man is not the man I married,” leads Abigail to a life enriched by new friends and new pursuits imbedded in an independence she never imagined.

Abigail’s three dogs along with family and new friends become the foundation of her emotional recovery. Just as she provides support and unconditional love to her damaged husband, so too do the dogs provide the same to Abigail. While her husband speaks a confused but sometimes strangely prophetic language, Abigail derives wordless communication from her beloved dogs learning the simple pleasure of just being together.

Despite his suffering hallucinations, confused language and a personality disorder, Abigail is able to create a positive existence for her husband as well as for herself even in the face of institutionalization.

This is a book that spoke to me as a former caregiver. It made me cry and laugh, sometimes at the same time bringing rainbows into my reading experience, and I highly recommend it, not only to caregivers but to those who want to understand some of the challenges of caregiving.
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4   Link   Chronic Progressive
Chronic Progressive
By Marion D. Cohen
Reviewed by Sigrid Weimer

Chronic Progressive is a well thought-out series of poetry written in three parts, which outline the stages of being a long-term caregiver. Part 1 – “Wrought with Efficiency” - describes the early stages of an illness through the spousal caregiver’s eyes. Laced with a small dose of denial, Part 1 shows the beginning of a new normal. Part II – “Out of the Frying Pan” – deals with the identification of a failing spouse and the nursing-home era of the caregiving journey. Finally, learning to navigate the good and bad days as they come, in Part III – “Out of the Fire” - brings an acceptance that life and marriage will not return to the pre-illness, two-way relationship. This section is also about being a Former Well Spouse, and then finding new love.
Throughout the three parts, Marion Cohen is skilled at providing helpful advice and suggestions to give guidance to the caregiver. The book emphasizes moving on, during and after the caregiving years. Some concepts that struck me were that a caregiver should keep his/her individual talents active and make an effort to replenish him/herself as much as possible. Keep your friends and realize that not all friends and/or family will stay close. Also, organization is key to providing a constant in your routine.
Chronic Progressive is an easy read. You can read one page or ten and put it down until you have some quiet time again. I also feel it would be an excellent source to introduce others to your plight without being overwhelming. It can be difficult to discuss our situations with others, but this resource would be a welcome addition to a caregiver’s aids.

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5   Link   Cruel and Unusual
by Marion Deutsche Cohen
FREE DOWNLOAD

This "prose well spouse book" is a collection of related essays, the ideas gleaned from interactions with people while promoting "Dirty Details: The Days and Nights of a Well Spouse.
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6   Link   Liberating Losses: When Death Brings Relief
by Jennifer Elison, Ed.D. and Chris McGonigle, Ph.D.
(Reviewed by Barbara. Plasker, Ed.D.)

This book "brings a taboo subject into the light. It lets people know that they are not alone when they feel relieved when their loved one's suffering is over and their caregiving days are behind them. Liberating Losses gives the reader permission to let go and move on."
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7   Link   Mainstay: For the Well Spouse of the Chronically Ill
by Maggie Strong.

This practical and informative book describes the author’s journey as a spousal caregiver. Not only does Strong describe her husband’s battle with Multiple Sclerosis, she gives us concrete, hard-sought information on depression, impotence, fatigue, downward mobility, isolation, anxiety and the loneliness that can accompany a chronic illness in the family. This book started our Well Spouse Association.

Mainstay is out-of-print, however, used copies may be found on bookstore websites such as Amazon.com and Barnesandnoble.com .

Selected chapters (more than half the book) are available on this website, for supporting (paid) WSA members. Log in, and choose the Members Area.

Further book reviews can be found at this website: http://tinyurl.com/ydzq3yf
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8   Link   The 36 Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life
by Nancy L. Mace, M.A. and Peter V. Rabins, MD, MPH

Although this practical and informative book focuses on Alzheimer Disease and related dementias, you can learn: how caring for any impaired person affects you, how to care for yourself, how to deal with financial and legal issues, and how to make decisions about nursing homes and other living arrangements.
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9   Link   Professor Cromer Learns to Read: A Couple’s New Life After Brain Injury
By Janet Cromer, Reviewed by Terri Corcoran

Former Well Spouse Janet Cromer chronicles her harrowing 7-year caregiver journey in Professor Cromer Learns to Read: A Couple’s New Life After Brain Injury. Although Janet is a psychiatric RN, licensed psychotherapist, educator, and freelance healthcare writer, this is not a “how-to” book. Rather, it is an extremely honest, open accounting of how Janet and her late husband Alan coped with Alan’s complex combination of heart disease, brain injury, dementia and Parkinson’s Disease.
Whatever the illness is that made you a well spouse, you will find relevance in Janet’s chronicle of the struggles common to us all: the horror and fright of facing chronic illness/disability after a diagnosis or major event (in Alan Cromer’s case, a heart attack after boarding a plane and suffering massive oxygen deprivation until he could be taken to a hospital, leading to severe brain injury); the heroic, extensive efforts to rehabilitate Alan as much as possible; the intense frustration and physical exhaustion of constant caregiving; the unbearable sorrow of losing so much of your spouse and your dreams for the future.
[note: rest of review will appear in the next issue of Mainstay]
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10   Link   Saving Milly: Love, Politics and Parkinson’s Disease
by Morton Kondracke

This informative book describes how Kondracke and his wife, Milly, coped with her diagnosis of Parkinson’s disease.
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11   Link   Passages in Caregiving
Now published -- Review forthcoming...

Described as “America’s most therapeutic journalist” and her writing “a road map of adult life,” the author of Passages, who became an icon of Boomers, will turn her attention to helping a generation navigate the emotional and practical sides of the caregiver role. In addition, for the first time, she will share the story of her personal passage to family caregiver for her husband. “It is a tale both cautionary and inspirational and one that readers will identify with both emotionally and situationally,” she says.

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12   Link   The Goldfish Went on Vacation: A Memoir of Loss (and Learning to Tell the Truth about It)
by Patty Dann
(Reviewed by Terri Corcoran)

If you’re a well spouse with young children, Patty Dann’s new book, The Goldfish Went on Vacation: A Memoir of Loss, is a valuable read. In only 154 pages of mostly two-page chapters, Dann openly describes the year between her husband Willem’s diagnosis of fatal brain cancer and his death, and how she involves their preschool-age son Jake in an honest journey in which they both learn to celebrate living and accept dying. Her grief, fears, and day-to-day struggles are all too familiar to all of us. As sad as her story is, it can be comforting to read the words of someone who truly understands our distressing challenges
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13   Link   The Human Side of Cancer
In The Human Side of Cancer, Jimmie C. Holland, MD, of Memorial Sloan-Kettering Cancer Center, explores the broad range of emotions people with cancer and their loved ones experience from the moment of diagnosis through the treatment and its aftermath.
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14   Link   When the Man You Love is Ill
by Dr. Dorree Lynn

Dr. Dorree Lynn’s latest book is entitled, When the Man You Love is Ill; Doing Your Best for Your Partner without Losing Yourself (Marlowe & Co. /Avalon Publishing 2007).

The break-through book is an emotional survival guide with a pragmatic approach, providing timely advice that is candid, compassionate and holistic. It goes beyond a basic “How To” book that helps a caregiver take care of an ill spouse or loved one. The reader will also learn how to take care of a personal relationship and how to take care of herself. The focus is on keeping a relationship that’s under stress alive and loving. In today’s world, most caregivers are women. However, there is a special chapter in the book that is dedicated specifically to men.
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15   Link   The Selfish Pig's Guide to Caring
by Hugh Marriott
(Reviewed by Terri Corcoran)

This book is a fantastic read, and it may leave you with some new coping mechanisms, more confidence, and a lot less needless guilt! With great humor and a sharply sarcastic wit, Marriott gets right to the heart of all the difficulties we caregivers encounter – emotionally, financially and physically. If you ever though a nasty thought, lost your temper, felt like you were going insane, felt isolated, friendless, frustrated with bureaucratic idiocy, or wondered why you were being a caregiver in the first place, The Selfish Pig offers understanding, comfort and assurance that you are not alone or insane or a bad person.

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16   Link   The Torch Carrier
by Antonio Richardson

Antonio Richardson has written a powerfully poetic autobiography, which begins with his life as a 25-year old well spouse looking after his wife, Cynthia, who developed breast cancer at the age of 24, when they had 3 children, the eldest only 6 years old.
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17   Link   When Things Fall Apart- Heart Advice for Difficult Times
by Pema Chodron

The author does not focus on any specific disease or disability but on the spiritual life of caregivers. Although the author is a Buddhist nun, she discusses coping strategies that any spiritual person can adopt. Applying the principles in this book will help well spouses develop wisdom, compassion and courage.
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Did You Know . . .

Greg Henson Pop Music
 

 Download, and Support WSA

The WSA is pleased and excited about a fundraising project one of our friends has undertaken. Greg Henson, singer/songwriter, has just released “Pop Music,” an album dedicated to raising funds for the Well Spouse Association and The Michael J. Fox Foundation.

Sample audio tracks  

 7. Something in the Air Tonight

 8. Poor Lonely Joan

Read more...

WSA Stories

The Most Loving Thing

The Most Loving Thing

By Dizzy -- WSA Support Group Leader, Forum and WSA Member 

A year ago today I walked out of the assisted living community without her.  It was quiet--deeply quiet--walking alone to my rented car and driving away.  Away.  A dreadful word loomed just beyond my sense of exhaustion, relief and freedom.  I didn't think about it head-on, but it lurked there waiting.  Abandonment.

A series of illness had hijacked her, and me, and dropped us in a strange land.  Her with dementia, me with my own madness for which I have no name.  It is the madness of loss--loss of a lovely home, a good job, friends, family, retirement, travel, community, intimacy, companionship--peace

Read more...

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