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Books
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# Web Link Hits
1   Link   Strange Relation: A Memoir Of Marriage, Dementia And Poetry
By Rachel Hadas
Paperback, 240 pages
Paul Dry Books
List price: $16.95

Main link is to NPR's Talk of the Nation show March 10, 2011 interview of Rachel, who is a widely published poet, and a Board Member of the WSA.

Other links:

The NPR blog has a writeup here: http://www.npr.org/blogs/talk/2011/03/10/134424454/in-grief-as-in-life-we-are-all-different

Read An Excerpt here: http://www.npr.org/2011/03/10/134428733/Spouses-Dementia-Leaves-Poet-A-Strange-Relation

The book is available from:

http://www.amazon.com/Strange-Relation-Memoir-Marriage-Dementia/dp/1589880617/ref=sr_1_5?ie=UTF8&qid=1299852110&sr=8-5

Review to come.


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2   Link   Cancer, a Caregiver's View
Cancer, a Caregiver's View. Poetry by Donna Marie Merritt. Avalon Press, 2011

"A touching, moving journey through a debilitating disease. All loving caregivers, not only those whose loved ones have cancer, can definitely relate. These poems brought memories to the fore, and tears to my eyes."

reviewed by Arline Shapiro 		909
3   Link   Chronic Progressive
By Marion D. Cohen
Reviewed by Sigrid Weimer

Chronic Progressive is a well thought-out series of poems written in three parts, outlining 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 guide caregivers.

The book emphasizes moving on, during and after the caregiving years. Some concepts that struck me were:

- 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.

- 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.

1307
4   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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5   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..."

The book is also available online, through the publisher's website here: http://www.guilford.com/cgi-bin/cartscript.cgi?page=pr/jacobs.htm&dir=pp/gg&cart_id=400670.1187
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6   Link   First Aid for Heroes
By Jane H. Davis. . Published by Rocket Science Productions. http://www.rocketscienceproductions.com/ [Northern Virginia, U.S.]
(reviewed by Richard Anderson)

First Aid for Heroes is a personal memoir that begins with the 9-11 disaster, and carries the motif through, in the subsequent life of the author. Jane H. Davis’ account of heroism, not on a grand scale, but in a very personal, everyday way – describes her own heroism in living an “ordinary” life which the reader learns, turns out to be much more than ordinary in several ways.

After the September 11, 2001 attack on New York’s World Trade Towers, Jane called a friend at the American Red Cross station in Fort Bragg, NC, to ask what she could do to help. Starting by answering the phone at the base, she soon volunteered as an RN to go to New York City, and was assigned to do liaison and supervisory work at the Red Cross’s 24/7 Respite Center, where First Aid of all kinds and meals were made available to the Ground Zero workers.

The center was a place of refuge and respite for the men and women who had been working long hours helping sift through the wreckage for human remains, and Davis writes of the powerful emotions they felt as they talked, and of her own as she listened.

Her story evolves with personal difficulties not of her own making that she overcame, and in reading of those I couldn’t help but reflect on how her struggles mirrored those of the thousands of families, friends and loved ones who were directly affected by 9/11.

One of her personal struggles came in 2006, when her husband, Col. Gary Matteson, U.S. Army, was diagnosed with Parkinson’s Disease. Davis’s description of the events leading up to the diagnosis will be very familiar to any spousal caregiver – the change in the marital relationship, the confusion over what was going on, and her own dedication to helping her partner regain a life in the face of a chronic illness.

Their relationship was further tested when Gary was diagnosed with Mantle Cell Lymphoma, a rare cancer. Treatment ensued. For herself Jane joined the Well Spouse™ Association, when she learned about it from a friend, and found it was a support, along with other steps she took, as a resilient survivor of what many would call a life interrupted.

In an epilog, she is able to relate that Gary’s cancer treatment was successful. Nevertheless, we well spouses are realists, and know that nothing in life is guaranteed, so we need to give, and take what we can day by day, in our personal relationships.

Everyone has a story, and in their story, if you look for it, you may well find a kind of everyday heroism in the face of sometimes great difficulties. First Aid for Heroes is a fine example of that.
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7   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
 		2909
8   Link   Hope Through the Eyes of Love
Hope Through the Eyes of Love: Life and Marriage in the Face of a Brain Tumor, by Patricia Meserve Gauvin and Angel Logan

Patricia Meserve Gauvin has a background in nursing with various jobs all enabling her to be her husband Ron’s advocate, caregiver, rehabilitation nurse and home health care clinician during his past 20 year triumph with a brain tumor.

Patti wrote her husband’s autobiography and developed a model for living through adversity for her master’s thesis at Antioch New England.

A review of the book is forthcoming. 		948
9   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. 		2582
10   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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11   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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12   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 		3201
13   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.

 		2917
14   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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15   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.
 		2914
16   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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17   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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18   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. 		2463
19   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.
 		3463
20   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. 		2904
21   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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