Book Review: "Poignant Moments...A Caregiver's Perspective"

[Brian_Frick]

This review was reprinted with permission by Dr. Christopher Blagg.

The world is full of caregivers, many of whom are not professionals but rather are family members or close friends. While many care for the old or the disabled with various chronic problems there are now some 350,000 patients in the United States on some form of artificial kidney treatment because of irreversible kidney failure. Each has family members and others who are impacted by the disease and the need for repeated dialysis treatments. A small proportion of these patients treat themselves or are treated in the home with even more involvement of family and friends.

Poignant Moments . . . A Caregiver’s Perspective by John Francis Wissler is a remarkable account of the life and death of a dialysis patient as seen over the years by her friend, lover and caregiver. It covers twelve years of Lois’ life, the complications of her kidney failure, and the last seven years when she was treated by hemodialysis in a center and then treated herself by peritoneal dialysis, and finally with home hemodialysis.

When we first started using home hemodialysis in Seattle more than 40 years ago, it very soon became obvious that whether a family member or friend was actively involved in the treatments or merely stood by, they came under pressure from the repetitive nature of the treatment. Three times a week for hemodialysis and every day with peritoneal dialysis.

We also realized the importance, as with any chronic disease, of the patient becoming as knowledgeable as possible about their illness and its treatment and becoming responsible for doing as much for themselves as possible. Even so, the pressures on the family member or friend are considerable.

This book describes in detail the ups and downs of the life of one particular dialysis patient. Not all patients have so many trials and tribulations on dialysis, and some will get a kidney transplant. For the others, as the book suggests, treatment at home is better in many ways provided the patient has a home and someone to support them and wishes to do this treatment at home. Perhaps Lois would have done better today as the even greater benefits of doing hemodialysis almost every day are becoming obvious.

This book is an account of how two ordinary people coped with adversity for a number of years and the effects this had on them. Both Lois and John, the book’s author, have a lot to tell us all. It is great, excellent, and very touching.

Christopher R. Blagg MD FRCP
Professor Emeritus of Medicine, University of Washington
Executive Director Emeritus, Northwest Kidney Centers, Seattle

Poignant Moments… A Caregiver’s Perspective
Published by BookSurge, LLC
an Amazon.com Company
ISBN: 1-4196-1042-2
Buy it here!

[Jfwag]

Yes . . . it is a most fitting tribute to Lois and something I know she would be so proud of . . . and, though it is her story, it is so much yours too. Though I appreciate the word ‘. . . Caregiver . . .’ in your title, you - and so many others like you - are so much more than that. The spouse, the children, the parents and the friends of patients with chronic kidney disease and dialysis-dependence ride its emotional rollercoaster as much (and often more so) than the patient him/herself. Yet too little time is spent, too little recognition is given by the me’s’ of this world - the health professionals - who concentrate on the disease but are often blinded to the ways it affects those who love and care yet feel so helpless.

From a practical - and selfish - point of view, I welcome your support of home therapies. Why so many should fear home dialysis and think it impossible defeats me sometimes. Still, lets still battle on - we small voices of reason - lets not forget that nearly 100 years ago they nearly turned the Titanic. Maybe now, we can put in that little extra bit of oomph to do it.

It (Poignant Moments . . . A Caregiver’s Perspective) is a beautiful work. It put me in mind of one of the 1st books I read as a renal registrar back in 1974 about renal disease and dialysis - which I pull from the shelf as I type to remind myself (again) of the early days - The Courage to Fail: by Renee Fox and Judith Swazey. So much then was different - yet how the same. At the end, the same dilemmas, the same uncertainties, the same hope before anguish.

“. . . you had the courage to tell us what many of us need to be reminded - what it must be like to be feel helpless yet to be the only true and immediate help: what it must be like to need to cheer when feeling cheerless: what it must be like to see someone you love physically struggle when so strong yourself.”

Yet again, I am brought back to earth with a jolt. You have dealt with horror yet how well you have softened its edges with humour and empathy. Well done.

Prof. John Agar, MBBS, FRACP, Director of Nephrology Geelong Hospital, Australia.

[Jfwag]

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

www.ons.org/publications/journals/ONF

[Jfwag]

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