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Author Biography: John Francis Wissler

Born in New York City, John Francis Wissler was raised in Medfield, MA. He became involved with End Stage Renal Disease in 1990 due to his significant other Lois’s battle with kidney stones. He turned caregiver and peritoneal dialysis partner for her in 1996. Due to peritonitis and one and a half years of hospitalizations, in late 1999 he became a fulltime caregiver.

 

Eventually he and Lois became one of only 25 people in the state of Massachusetts to perform home hemodialysis in 2000 until her passing in March of 2001.

 

John then turned author later that year and published his memoir, Poignant Moments . . . A Caregiver’s Perspective chronicling their 12 years spent together battling a disease suffered by over 300,000 people in the United States and 1.4 million worldwide. His book has been touted by some of the top nephrologists in the world. He currently resides in Attleboro, MA.

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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. 

 

 

Comments by Professor John Agar

 

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

 

 

Oncology Nursing Society

www.ons.org/publications/journals/ONF

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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Review by Christopher R. Blagg, M.D.

 

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

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 When I first read excerpts of Poignant Moments . . . I was immediately caught up in the story. It became much more upon reading the entire story. I was struck by the stark honesty of one caregiver’s account, which other caregiver’s will relate to. One forgets the sacrifices of these caregivers.

 

The story also illustrates that sometimes empathy is lacking from the medical community, family members and friends at times.

 

The role of the caregiver is portrayed with clarity. The other issues of insurance, financial woes and some history of the disease (ESRD/Dialysis), studies and treatment options and dilemmas are also described in much detail. A wonderful, enjoyable read.

 

When asked what a caregiver would get out of this book, I replied: “It's simple, you're not alone. Amidst what may appear to be a bottomless abyss of frustrations and anguish there are those who do care. Throughout the poignant, or if you wish bittersweet experience as a caregiver, you will survive as many others before you have and carry on your life with memories and hope.’"

 

Lauren Cambers, OTR/L, LADC 1

 

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Poignant Moments . . . A Caregiver’s Perspective is a book that every caregiver, patient, and doctor should read. I was a caregiver for my sister who had cancer for over four years and I could relate to the author John Francis Wissler taking care of Lois.

We always think of the patient and what they go through, but this book is a down to earth story about real people trying to make ends meet and making it through some really bad times, with Lois going through kidney failure and dialysis along with the other health problems that came her way. She was one strong lady for sure but she had a caregiver, lover, partner, who was right there with her through it all.

I am now the patient and my husband is the caregiver and for all I went through like John, it makes me thankful that much more. There are all kinds of information in this book too for dialysis patients. I think Wissler covered it all and did just a remarkable job. I cried, laughed, and was in anger at some points of what they had to go through. It is a shame that there is not a funding for caregivers, some kind of support for those of us that spend everyday taking care of someone and most of the time barely a pat on the back. All the while trying to keep a happy face and being strong for all to see.

 
Sue Reckner is a former caregiver for her sister, turned care reciever and ESRD patient
 
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National Family Caregivers Association Announces November As National Family Caregivers Month

 

Caregiver and Author John Francis Wissler’s Story Illustrates The Struggles of 50 Million People Providing Caregiving Services To Loved Ones

 

(Boston, Mass., October 2005) - Organizations, major corporations and community-based groups around the world will celebrate (NFC Month) in November to thank and support family caregivers. John Francis Wissler, author of Poignant Moments . . . A Caregivers Perspective, is available throughout November to talk about his 12-year experience as the primary caregiver to Lois, his longtime significant other.  Lois passed in 2001 after a long bout with End Stage Renal Disease (ESRD). 

 

Poignant Moments . . . A Caregivers Perspective is a memoir chronicling John and Lois’ experiences with the U.S. healthcare system as well as their struggle to understand ESRD.  Moving as well as funny, Wissler’s unique perspective is much more than a “how to” or “self help” of dealing with government bureaucracy; it is a tribute to John and Lois’ relationship and to the struggles and triumphs of caregivers worldwide. 

 

Caregiving comes from the heart, the soul and the inner most part of one’s self,” said Wissler. “Family caregiving is often an undertaking of insurmountable complexities. It is an issue that touches most everyone at some point in their lives. Sharing my story is the best way to honor Lois and help others in similar situations in saying ‘you’re not alone.’”

 

John and Lois’ story speaks to everyone as the concerns of caregivers has moved from being a private family situation to a societal issue impacting policy makers, employers, insurers, and healthcare professionals. 

 

According to the National Family Caregivers Association (NFCA), in any given year over 50 million people provide some level of caregiving services. More than 25 million people provide, on average, 20 hours of care a week, or more, for a loved one. Those services are valued at more than $257 billion dollars a year. Family caregivers provide more than 80% of all home care services. Of today’s  family caregivers, 46% provide some level of nursing support and 52% provide help with daily living activities such as dressing and toileting.  Additionally, businesses lose between $11 billion and $29 billion annually due to employees’ need to provide care.

 

NFC Month is organized each year by the National Family Caregivers Association, a grass roots organization whose mission is to improve the overall quality of life of family caregivers and their loved ones.

 

To learn more about John’s story and the difficulties facing family caregivers, please call John directly at 508-287-0818 or email: PoignantMoments@Hotmail.com

 
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