Book Review: Poignant Moments: A Caregiver's Perspective

Discussions for Patients, Family, and Friends HD For Patients
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Reprinted with permission of Oncology Nursing Society
www.ons.org/publications/journals/ONF

Poignant Moments: A Caregiver’s Perspective. John Francis Wissler. North Charleston, SC: BookSurge Publishing, 2005, 332 pages, $19.95.

Poignant Moments captures the story of the joint struggles of a patient with end-stage renal disease (ESRD) and her family caregiver. The trajectory tracks early disease and culminates at the end of life. The purpose of the book is to share the chronic care experience with descriptions of the horror, fear, uncertainty, and real anger so often experienced by family caregivers.

The foreword was written by an individual with renal failure. The text begins with a description of the last 24 hours of life and discusses a history of ESRD and Medicare. An epilogue, glossary, and references also are included. The remainder of the book is divided into three sections and 19 chapters.

The author describes his experience as a caregiver for his wife during her long trajectory (1990–2002). He discusses care ambiguities, uncertainties, many complications, ethical dilemmas, medical conspiracies of mixed communication, and misrepresentations of information from healthcare providers. The journey is filled with periods of complexity and dilemmas dealing with the regulation for healthcare coverage and eligibility to receive a renal transplant.

The book poignantly describes the experience of the patient and caregiver. The author takes readers through the complexities of care with very vivid detail and conversation.

Poignant Moments contains an extensive discussion of the journey, beginning with kidney stones through changes of physicians, numerous medical setbacks, dialysis, preparation for kidney transplants, amputations, and death. Each is told with careful dialogue between the patient and family caregiver.

Caregivers’ emotional highs and lows are presented effectively. Each chapter is filled with examples from patients and their family members experiencing longitudinal chronic care. Direct quotations add to the richness of the descriptions. Comments from the author, facts about the disease, healthcare regulations, and dilemmas are interspersed with the dialogue.

One limitation of the book might be the amount of technical language that is used. Many lay caregivers and readers would have difficulty with the technical language, even though a glossary is provided. Perhaps a summary of helpful strategies could be included for family caregivers. A specific list of resources also might be useful.

Poignant Moments is a narrative with strong descriptions and quotations that make the accounts seem alive and truly poignant, which is consistent with the title. The intended audience should be family caregivers throughout the United States who need to know that they do not struggle alone. However, the book’s audience also should include physicians, nurses, and other healthcare providers and policy makers so that they see how families struggle with chronic care and family caregiving. Very detailed descriptions of emotions, reactions, and feelings are captured in this account of being a caregiver.”

Barbara Given, PhD, RN, FAAN
University Distinguished Professor
Michigan State University
East Lansing, M

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Reprinted with permission of the Sun Chronicle http://www.thesunchronicle.com/

Attleboro man shares story for caregivers
By Gene Moore

A friend of mine, John Francis Wissler, an Attleboro resident, has written an enlightening book whose subtitle “A Caregivers Perspective” appealed to me in my current care-giving situation.
It is a story from the perspective of an eventual caregiver who fell in love with a person and “cannot describe her in simple terms.”
The story is made readable and real because of the author’s style, very personal and conversational.
I do recommend that anyone with kidney stones or kidney malfunction read the book. The explanations are very clearly written and essential for those with kidney problems.
The book starts with a loving foreword about kidney dialysis by Jurgen Hesse, a broadcast journalist from Vancouver, Canada. He, an 80 year old, tells of his gratitude for his life being extended by dialysis and his congratulations to the author giving details of the caregiver’s life.
Almost immediately, the story of told of the author’s friend Lois’s last hours after years of life extension by dialysis. You may want to skip that part, but if you do, you lose the gist of the story, the caregiver’s perspective on the giving of care.
A long interesting chapter tells of the beginnings of treatment of kidney problems and the difficulties of the attempts by President Harry Truman to provide government help for people who have a kidney problem.
Many years later, in 1965, the Mills Bill, which gave us Medicare and Medicaid was signed. The first person to sign up was Harry Truman. However, it took many years until, thankfully, President Nixon signed Titles XVII and XIX of the Social Security Act. These provided care, for the first time, for dialysis to be covered.
The bulk of the book tells a chronology of the author’s and Lois’s experiences, both the good days and the bad.
For me, currently a caregiver myself, the ups and downs of their lives is presented lovingly and helps me understand the caregiver’s role.
The story proper starts with the author driving his girlfriend to Mass General Hospital because she had painful kidney stones. It goes on through gradual discovery of the need for dialysis to cleanse the body of wastes and to regulate body fluid levels.
There are good times and bad times for people undergoing dialysis. In between dialysis times the author and Lois get involved in politics, plant tomatoes and beans and otherwise have normal lives.
Interspersed with these good times is a long, detailed explanation of the many frustrations that a caregiver has. Among those is the frantic search for places where kidney dialysis can be had within reasonably distance from Attleboro. Also the trouble a caregiver or a patient can have with the frustrations of the medical delivery system.
Even the acronym for Lois’s disease, ESRD, is threatening:, End Stage Renal Disease.
In the book, the author takes us through a litany of medical troubles, starting with the above-mentioned kidney stones and proceeding with the horrors of first time dialysis. The list is long: finding nearby dialysis sites, getting rid of the kidney stones, the grind of three time weekly dialysis, the search for home dialysis equipment, the fall into peritonitis, surgery for ulcer removal, removal of a weakened kidney, toe amputation.
The depression of this long list of events is ameliorated by the upbeat of the caregiver himself, John. Francis Wissler.
The benefit of this detailed chronicle of troubles for me is the tireless energy of the caregiver, the ability to hang in there when all seems dire.
If you or a friend is a caregiver, I suggest you recommend to him/her the reading of this book. It shows the possibility of lasting through grim medical crises. The title of the book is “Poignant Moments.”

Eugene Moore is a community columnist. His commentary appears every other Monday. Ordering information on Wissler’s book is available online at www.poignantmoments.tripod.com