Poignant Moments...A Caregiver's Perspective

Dialysis patient and author Jurgen Hesse says, Poignant Moments…A Caregiver’s Perspective “. . . is the kind of moving story that cannot be told enough times.” Many people unfortunately do not understand dialysis, but all know that we have kidneys.

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Location: Attleboro, Massachusetts, United States

Sunday, December 04, 2005

On Poignant Moments…

On Poignant Moments…A Caregiver’s Perspective by John Francis Wissler "Wow! This is so poignant and heartfelt…a significant piece of work." -Lori Swartz, MSW, LICSW ". . . I am brought back to earth with a jolt! It is a beautiful work. . . .you and so many others like you (caregivers)-are so much more . . . (you) have dealt with horror yet how well you have softened its edges with humour and empathy. . . . These are things we, who work with those who are chronically ill, need so much to be reminded of . . . Thanks for the reminding. Well done." -Professor John Agar, MBBS, FRACP-Director of Nephrology, Chief of Medicine, Barwon Health, The Geelong Hospital, Geelong, Victoria, Australia “I found myself not wanting to stop reading…not only informative but captivating ...a required reading for everyone in government and the healthcare profession.” -Martha Washburn, Caregiver on the cutting edge of Nocturnal Home Hemodialysis. “A powerful memoir as a caregiver... It’s the kind of moving story that cannot be told enough times so that people understand what it means for someone to be on dialysis, and how the caregivers often get involved. It’s a better understanding of kidney failure and the inadequate and often failing remedy of transplanting a cadaveric or live-donor kidney.” - Jurgen Hesse, Author-The Dying of the Light and Nine Lives of a Pessimist/Dialysis Patient "To see your partner so sick and feel helpless, this story is good for the caregivers who have walked in similar situations and felt these very feelings." -Marlene Axtmann dialyzed her husband David for over 33 years at home. David was also the author of Dialysis-An Unanticipated Journey. “You do not have to be a doctor, or ESRD patient to relate to this book. This is a story of struggle, pain, love, loss, happiness, defeat, triumph. It is a true story about true people. There is no candy coating, no savoring of one's emotion, just life.” -Annie Maloney ". . . well presented inside. . . . a tremendous amount of work went into the project. The pace of the writing seemed to me to reflect the sometimes frantic times . . . descriptions all through the book were very clear. . . . Even more than helping the caregiver, your book might, in the long run, create an awareness among (health) providers that has been missing. Great Work." -Fran Anderson, retired Registered Nurse “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, FAANUniversity Distinguished ProfessorMichigan State UniversityEast Lansing, M Poignant Moments…A Caregiver’s Perspective Published by BookSurge, LLC ISBN: 1-4196-1042-2 An Amazon.com Company

Wednesday, November 30, 2005

The Back Cover of Poignant Moments...

“Wow! This is so poignant and heartfelt…” -Lori Swartz, MSW, LICSW “A powerful memoir as a caregiver . . . a story that cannot be told enough times." -Jurgen Hesse, author Dying of the Light/Dialysis Patient "Not only informative but captivating . . . a required reading for everyone in government and the healthcare profession.” -Martha Washburn, Caregiver on the cutting edge of nocturnal dialysis. "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 Chambers, OTR/L, LADC 1 "To see your partner so sick and feel helpless, this story is good for the caregivers who have walked in similar situations and felt these very feelings." -Marlene Axtmann dialyzed her husband David, author, Dialysis-An Unanticipated Journey, for over 33 years. “You do not have to be a doctor, or ESRD patient to relate to this book. This a story of struggle, pain, love, loss, happiness, defeat, triumph. It is a true story about true people. There is no candy coating, no savoring of one's emotion, just life.” -Annie Maloney “It’s not sugar coated . . .” a home dialysis nurse. Front Cover Photography and Design Copyright © by Robert J. Andrews

Saturday, November 26, 2005

Friday, November 25, 2005

Foreword by Jurgen Hesse

Giving care is one of the most satisfying and demanding tasks human beings can perform. There are some fifty million of these caregivers active in the United States, and we may assume that in neighbouring Canada the figure is around five million. To whom do these people give care? The problem of modern miracle medicine is that longevity has risen dramatically, but as a result chronic diseases, which would have killed off their victims when nature intended, they are kept alive. These days modern medicine interferes and prolongs the life of these victims by years or even decades. Let me tell you how I know, and how caregiving has affected me. In 1985 I was diagnosed with an unstoppable case of glomerolunephrosis, i.e. my kidneys were failing. In 2000 they were no longer filtering the toxins from my blood, nor did they remove the waste fluid anymore. I would have died within weeks, at best months, if a German doctor had not invented the principle of the artificial kidney machine in the late Twenties. It took another thirty years for medical technology to build a functioning hemodialysis machine. For the past five years I have gone to the hemodialysis clinic to rid my blood of toxins and waste fluid. In the unit we have up to twenty-eight kidney patients at a time, three shifts a day. Many arrive by car, others take the Handi-Dart that picks them up and takes them home again. Yet others are not mobile and arrive in wheelchairs, pushed by—yes, by their caregivers, who can be members of the family or volunteers. Or they wheel themselves, alone. Some even have electric scooters, without a caregiver. Having a caregiver live with you is a blessing. My wife is a caregiver for me, and she accompanies me to every hemodialysis session, uncomplaining, patient, always on hand to fetch a blanket, perform this or that little task. At the same time I see many elderly men and women arriving alone. You can usually tell them because they like to talk, and don’t want to let you go. Loneliness affects all of us, but caregivers make the loneliness of the terminally ill bearable. Without someone who cares—and this is the deeper meaning of giving care—we wither. Consider this: whatever your endstage disease may be—and statistics will make sure that you are a potential target for such an event—someone who is there for you when you are handicapped or immobile can make your illness appear less of a burden. I remember a man in his forties: Type One diabetes (Insulin-dependent), heart problems (they come uninvited, believe me), and without working kidneys. When I first saw him, he was lying flat on a special trolley outside the main entrance of our hospital. He looked very short. A midget, I thought. Then I realized that both his legs had been amputated at the hip. He was unable to move his arms. So he lay there until the Handi-Dart came to take him home. That first day I saw one of our nurses outside, lighting a cigarette, and putting it between his lips. You see, he didn’t have a caregiver. Months later I saw his for the last time on a gurney, sitting up, obviously in great pain. Someone pushed him out the door. Next time, I asked where Mr. X was. “Oh, he passed away.” That was his obituary. Was there someone who cared for him? Surely, no? Or perhaps the caregiver was him/herself unable to help; or the person just did not care enough to help him defeat his loneliness and helplessness. When you read this book, you will find out about giving care from someone who gave care. I never met the author, we are email acquaintances, but I know what he had been through when he was there for every session of the home dialysis, and when the endstage renal disease became worse, and when she died. At least she died not alone. We see a lot of pain in our dialysis unit, just as you can see it on the oncological clinic, the general hospital wards. When I was in CCU1—Cardiac Care Unit 1—my roommate died. No one was with him. Opposite me, in the dialysis ward, a fellow patient died during dialysis—a rare event—while he lay there alone in his bed, wheeled in earlier from another hospital ward. After the health professionals left, some relatives came whom I had never seen before, shuffled their feet, went away again, and then the dead man was zipped in a body bag and wheeled out, while the nurses drew all the curtains around our beds. What do people think we terminally ill people want before anything else? We want someone to give a damn for us, someone who offers us his or her care, who is there while we are thinking about what Raymond Chandler has called The Big Sleep. Sleep well tonight and think a little about whether you, yes you, might try caregiving as a gesture of goodwill—someone terminally ill will thank you. It’s a tough commitment, but it’s doable. Jurgen Hesse, J.H. lives in Vancouver, Canada and is the author over more than 40 books, among them “The Dying of the Light,” based on the Dylan Thomas poem and dialysis. Read more: @ http://poignantmoments.tripod.com/

Interview with Home Dialysis Central

An interview with author John Francis Wissler on Home Dialysis Central Lois & John Lois was born with only one working kidney. So, she was more than a little concerned when she developed stones in her "good" kidney. The kidney stones were painful, and Lois spent 3 weeks in a Massachusetts hospital getting treatment to break up the stones and pass them from her system. The experience was the beginning of a new phase for Lois and John (her significant other)...a phase that would involve both of them in learning about and living with chronic kidney disease. A learning processAfter her kidney stone episode, Lois began to see a nephrologist ("Who even knew what a nephrologist was?" laughed John. "We even had to learn that.") for regular check-ups. And, both Lois and John began to search for information about kidney stones, kidney disease and living with chronic illness. "Educating yourself is paramount," said John, "if you don't know what's going on you'll be stuck." At first John and Lois looked up information about the best diet for people with kidney stones. They quickly moved on to learning about the stones themselves, the tests and the treatments. Because they knew that Lois' remaining kidney was likely to fail, they also learned about chronic kidney disease, kidney failure and dialysis. Next, came financial research. How were they going to pay for Lois' medical care? What did it take to qualify for Medicare coverage that would help pay the cost of dialysis? Even though they didn't have a computer at that time, Lois and John used other resources. "We'd go to the library or ask friends and family for help," remembered John. "Eventually we got our own computer. It's a great way to get information. Now I just Google everything." Starting dialysisLois' kidney function continued to deteriorate, and 6 years after her kidney stone episode, her doctor told her it was time to start dialysis. And she did start—like most people do—with in-center hemodialysis. "Lois never liked in-center hemo," remembered John. "Whenever she was there, all she could think about was how sick she was." Lois and John were so unhappy that they changed dialysis centers to see if things might be better someplace else. When a nurse at the new unit asked if anyone was interested in learning about peritoneal dialysis (PD), they jumped at the chance. She and John trained to do PD and happily went home. "PD was fabulous," recalled John. "We started doing manual exchanges and then moved to a cycler. Lois loved the fact that she didn't have to go to the dialysis center anymore." Unfortunately, a severe case of peritonitis ended Lois' ability to do PD, and when the infection cleared up, she went back to in-center hemo. Discovering the home hemo optionMeanwhile, John was talking to people with chronic kidney disease online...in chat groups and on discussion boards. Through these people, he learned that it was possible to do hemodialysis at home. "Things were changing and coming full circle from the sixties, when dialysis all began." he said. John started to look into home hemodialysis as an option for Lois. "I knew she wasn't going to last much longer in-center," he said. "She disliked it so much she would always want to come off early, and that's not good for you. Those 15 and 20 minutes add up over time. We learned about patient and caregiver control and that yes hemodialysis can be done at home. With willingness, desire and the thought of a better quality of life (QOL) we realized, 'there's no choice!!'" John and Lois liked the idea of home hemodialysis, but they were afraid that Lois had too many medical complications to qualify. After much discussion, Lois told the head nurse at her dialysis unit that she was interested in doing dialysis at home. She got a referral to the home training nurse. "We met with the nurse, with the dietitian, the social worker, and the doctor to talk about home dialysis," said John. "We were surprised, but Dr Lauer (Allan Lauer, MD) gave us the OK." Getting readyJohn had some doubts. "I sat on a bench outside the dialysis unit and thought about it long and hard," he recalled. "What was I getting myself into? Could I handle the responsibility?" Encouragement from the home dialysis staff at Taunton Kidney Center (Taunton, MA) and the belief that home dialysis would be better for Lois helped John make the decision to go ahead. Lois and John began training for home dialysis in September 2000. They went to training sessions 3 times a week on the same days Lois had her dialysis treatments. Sometimes, John went into the unit for extra training on Lois' days off. "I was afraid of the training," John said, "but it was not as tough as I thought it would be. It was actually easy." After 3 months (with a few breaks due to scheduling) John and Lois passed the test—they had the knowledge they needed to do dialysis at home. Home at lastNow, he's glad that he did. "Things couldn't have been better once we got Lois home," said John. "She could sit or lay in her own bed; she didn't have to be in one of those recliners." Because Lois was more comfortable at home, she was able—and willing—to dialyze for longer periods of time. "We did dialysis 3 times a week for 4 1/2 hours," John reported, "and our goal was to get to 5 hours quickly." Lois' lab values improved greatly and she began to feel better. Gradually, she was able to relax her dietary restrictions, too. "Her labs were so good she got to eat her first baked potato in 5 years," noted John. Lois used a Fresenius 2008H dialysis machine at home, and John handled the equipment set-up and tear down. "After awhile, I could set everything up in about an hour," he said. Help and technical advice from the dialysis staff was as near as the phone, but John rarely needed to call. "I tell everyone not to be afraid of the machines," he commented. "They may look scary, but they have so many safeguards and failsafe mechanisms with more bells and whistles than the average police car, that things hardly ever go wrong." Things went well for several months, but then Lois' hematocrit levels began to drop. She needed a blood transfusion and tests to find out what was wrong, but Lois didn't want to go to the hospital. Low hematocrit levels contributed to her becoming tired and lethargic. When she began to have breathing problems, her caregiver urged her to seek medical attention-which she did. She was admitted to the hospital with a "small amount of pneumonia." In spite of medical care, 6 days later Lois died. "Everything—all her medical problems—just caught up with her," explained John. Encouraging othersJohn remains a vocal and written advocate for home dialysis. "Home dialysis was the best thing—mentally and physically—for Lois," John declared. "I just wish more people were aware that it is an option. You don't need to be formally educated. Lois was and I, as a caregiver, was not. Willingness, desire, and motivation are important features. This can be done, yet our United States government needs to be educated." For that reason, and to encourage others who are living with kidney failure or caring for someone with kidney failure, John has written a book about his experiences with Lois and her struggle with kidney disease. He hopes the story will give others in similar situations the courage to learn about—and even try—home dialysis. John tells the sometimes heart-rending, touching story of their struggle to improve the quality of Lois' life....the challenges presented by the various systems they encountered, the moments of pain, joy, and humor. Lois died in March 2001 of heart failure linked to chronic kidney disease. John, her loving companion for years, tells the story of Lois' life (a strong, feisty, irascible, lovable person) with kidney disease, her successes with home dialysis...and his role as her caregiver in a personal memoir, written as a nonfiction novel entitled, Poignant Moments . . . A Caregiver's Perspective. The self-published book by BOOKSURGE, LLC (an Amazon.com company) is available via John's own website at http://poignantmoments.tripod.com or Amazon.com.

Thursday, November 24, 2005

Yes! I have read it - …it is a most fitting tribute to Lois and something I know she would be so proud of… you for writing .... 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. John, it 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. 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. 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 feeeling cheerless: what it must be like to see someone you love physically struggle when so strong yourself. These are things we, who work with those who are chronically ill, need so much to be reminded of - now and then. Thanks for the reminding. John Agar Professor John Agar, MBBS, FRACP, holds the title of Director of Nephrology, Barwon Health, Department of Renal Medicine, The Geelong Hospital, Geelong, Victoria, Australia. He is also the Chief of Medicine at Barwon Health, a senior transplant physician at the Transplant Clinic, St. Vincent's Hospital, Melbourne, and a Clinical Associate Professor of Medicine, University of Melbourne

Tuesday, November 22, 2005

Review of Poignant Moments...Dr Christopher Blagg, MD

The world is full of caregivers, many of whom are not professionals but rather are family members or close friends. While many of these 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 excellent, and very touching. Christopher R. Blagg MD FRCPProfessor Emeritus of Medicine, University of WashingtonExecutive Director Emeritus, Northwest Kidney Centers, Seattle

Poignant Moments... A Caregiver's Perspective

by John Francis Wissler

“ . . . it is a beautiful work. . . . I am brought back to earth with a jolt." Prof. John Agar, MBBS, FRACP, Director of Nephrology Geelong Hospital, Australia. Published by BookSurge, LLC an Amazon.com Company ISBN: 1-4196-1042-2 Google it

http://poignantmoments.tripod.com/

Sunday, November 20, 2005

Thanksgiving, November is National Family Caregivers Month

Caregivers-Let Us Unite! Whether it is offering comfort, assistance, or solace to a family member, spouse or friend on dialysis, caregiving is one of the most important (and rewarding) acts that a person can perform for another. However, it many times goes unnoticed, unappreciated, or just taken for granted. November is a month for caring, sharing, and giving thanks. Thanksgiving Day will be celebrated now and ironically, it is National Caregivers Month. How appropriate! Native Americans, who provided food, sustenance, and support to our Pilgrim forefathers, were truly our first caregivers. As then, our era today needs the support for those who take care of their loved ones in need. One of the reasons that caregiving has evolved into a $265 Billion Dollar per year altruistic need (U.S.) is because of the increased longevity of life. It is estimated that in my state of Massachusetts alone the figure approaches $4 Billion Dollars a year. Much of this is due to advanced medical technology, but we also need to factor in the caretakers role. Caregiving is a universal undertaking of unforeseen magnanimous proportions. Therefore, more attention should be devoted to this cause. So what does this have to do with dialysis? In my book, Poignant Moments . . ., “Linda Alexander . . . points out that, “Dialysis patients have presented larger interpersonal problems for health care professionals to consider than many other chronic groups . . .” She goes on to explain “. . . their care entails attendance to variables not usually included in treatment plans. . . .” Here are just a few personal characteristics that ESRD caregivers face day in and day out with their care receivers: · Acute and chronic anxiety · Dependency · Depression · Restlessness · Anger · Complaintiveness · Non compliance And there are many more! When there is a choice, home dialysis, whether it is PD or HD, is among several options loved ones can make decisions. A time that, 33-year home hemodialysis caregiver Marlene Axtmann recently said to me, she was thankful for having her loving husband home during the holidays. But what do we have here?-we have approximately 300,000 thwarted victims of ESRD by a 1973 noble piece of legislation. Yet at the same time, Medicare does not allow for payments for dialysis caregiving, never mind an optimal health treatment plan or self-education for those afflicted. Caregivers for ESRD patients are not well known. Look at the internet discussion boards. Com’on folks we are few and far between. “There is a big gap there” as somebody in the know recently commented to me. Where are we, or for that matter, where are all caregivers for all chronic diseases recognized? It is in November-National Caregivers Month. Let us remember, “You’re not alone.” Caregiving comes from the heart, from the soul, from the inner most part of one’s self. Sometimes there is a choice. Sometimes you have no choice. Whether you feel you have alternatives or not, a caregiver frequently will be undertaking insurmountable complexities. It can be a trauma like any other. Dialysis caregiving often takes more than just psychological soothing. It takes on a technical aspect and commitment in knowing that there is not a cure; there is no hope, unless the care receiver stays on board; on board a ship that began in the sixties and is now surfacing after years of a non-responsive general public awareness. Home dialysis offers a more personal approach, including comfort, less arduous treatment, and empathy from professional caregivers. For these reasons, I am thankful during this time of reflection for having had the opportunity to care for someone I loved on home dialysis. As 81-year-old Jurgen Hesse, dialysis author and patient says, “What do people think we terminally ill people want before anything else? We want someone to give a damn for us, someone who offers us his or her care…”

Poignant Moments...A Caregiver's Perspective

Dialysis patient and author Jurgen Hesse says, Poignant Moments…A Caregiver’s Perspective “. . . is the kind of moving story that cannot be told enough times.” Many people unfortunately do not understand dialysis, but all know that we have kidneys. However, author John Francis Wissler will wager that almost everyone knows someone who gives care for a friend, mother, or father; a grandfather; a grandmother…a son, daughter…or a spouse and home hemodialysis patient. In the United States alone, caregiver value accounts for $265 billion per year. In this book a story is told of the skills, patience and stresses of one out of fifty million caregivers. Wissler takes the reader on a tortuous journey of him as caregiver, and his significant other, Lois, as care receiver, with all the bumps and laughs in the road along the way. No less important is the bureaucratic wrangling as the author relentlessly seeks the appropriate level of medical care for a woman in increasingly dire straits. Poignant Moments…is a compelling human-interest, educational, nonfiction novel that leading nephrologist, Professor John Agar, MBBS, FRACP in Australia says, “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.” Price: $19.95 a copy (plus shipping and handling) To order this book, please visit http://PoignantMoments.tripod.com/id12.html or www.amazon.com. 332 pgs.