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  • Happy Thanksgiving/Caregivers

    Caregivers-Let Us Unite! Happy Thanksgiving!

    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 350,000 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…”

  • #2
    Ok this is the first time I have heard of dialysis patients being called terminally ill.
    does anyone know of a good exersise program for someone who has had a stroke and fixing to be on dialysis??

    Comment


    • #3
      Raw terms

      In raw terms, yes a dialysis person is terminally ill. No dialysis, simply put you die. Although I forget the exact figures, but dialysis patients have a high mortality rate in the first place especially on a 3X's per week regimen. Longer, slower, home dialysis is better because it mimics what normal kidneys perform. That being working 24/7.
      As far as exercise for a stroke, as explained in my book, Lois went through a stroke and the doctor determined it was time for dialysis at that time. Exercising quickly went out the window. I would suggest follow your doctor's advice. Best of luck, John

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      • #4
        Oh my gosh!!!! I was just at your site about the book you wrote. I have heard of you in the clinic I go to. I am getting the book as soon as we can afford it, my husband is disabled too, he is completely deaf but you could not tell the way he takes such good care of me,I can't wait to get it so my husband and I both can read it, we know we have a long road ahead of us and I really don't know what on earth I would do without him, I have no children and I have no family up here in Ohio, they are all in Texas what is left of them. I was a caregiver for my sister who died of cancer at the age of 40, it was the hardest time of my life.My poor brother is fixing to loose everything he has worked for all his life with the same problems I have except he has not had a stroke, thank God..He has two young daughters and they have their own lives and he is all alone. I deeply worry about him so much, but I am so happy that he will be able to do dialysis at home as part of what I have read on your site, home dialysis people live longer. I just wanted to tahnk you so much for replying and giving me a chance to figure out who you are, God Bless You and Good Luck to you...Sue

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        • #5
          Email me

          CajunSue,

          Email me if you want the book and we can make finannacial arrangments easily.

          John Francis Wissler

          Please pass the word around your dialysis unit.

          Comment


          • #6
            Thank you so much John, I have sent you an email and I will let the clinic know. One of the dialysis nurses will be glad that I am getting the book, she has sent me to different places on line for info, like my lab reports and trying to understand what all of it means, and meds that I have never heard of and have a nite stand full of them.I thought with me being 50 when I was told I ws looking at dialysis I thought it didn't happen to younger people, but I have seen little children and young teenagers and it just breakes my heart. I guess once your a caregiver it rubs off o you to where you wish you could help them all, I sure found out alot about my inner self taking care of my sister. It was like I was on the journy with her and at the end it was so peaceful holding her, I knew she had fought the battle of her life, and I also know she is with me until the end of mine..I have wrote a story about us on my site if you would like to read it and have time here is the url...Just scroll down the page to my links and read a tribute to my sister
            http://angelfire.com/mi4/cajunsue

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            • #7
              John Wissler's Book is a must read!!!!

              Hello everyone, I recieved the book John Wissler wrote on his caregiving to his partner who was on Dialysis and their life jorney. It is called Poignant Moments. I must tell you it is one of the best books I have ever read, their life was just about how mine and my husband's is right now. I am only half way through with it but I just got it yesterday and just could not put it down. Now this is a book that tells things like it is. Many people WILL relate to it, thank you John so much for being a part of this forum so I could have the chance to read the book, I wish you all the best in the world, because you caregivers are to me the most important people in our lives, it does not matter if we are dialysis, Cancer, or what ever type of patients. I am not yet ready for dialysis, I am still at 17% and Medicare will not cover dialysis until I am down below 15%. Everyday is a new learning day for me. I think the best thing a kidney patient can do no matter what age is to learn all they can before the big day and that is what my goal is right now. I am learning to take one day at a time. I felt lousy as hell last week but this week I feel better, and my blood test showed it. I am just starting to learn what all the blood test mean, what Bun is and all those other things they check for. I am not a anemic yet, I am lucky for that and I know before it is over I will be. I have a brother who just had a blood transfusion and is getting the shots and will start his dialysis at home on the 20th, about the time I will have lab reports back on my next 24 hour urine test, which is what my doctor is going by before he starts me on dialysis. My brother has two grown daughters who live about 15 minutes or so from him. He is going to do this alone. I just hope and pray they will look in on him. He says they have their own lives. I guess I have started a book here, I didn't mean to make it so long, just get the book and read it, John said he was no writer, well I say it is some of the best stuff I have read. Sue

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