Hello everyone – I am a 70-yr-old retired health care professional and writer; my EGFR has been in the low teens since 2019, and I have most of the challenges you would expect. As time goes by my renal status continues to deteriorate, and I’m not functioning as well as I used to in any area of my life.
Because of other health issues, my physicians tell me I’m not a good candidate for either dialysis or a transplant. I pretty much have mush for a heart. People choose dialysis because it can improve the quality of their lives; unfortunately that wouldn’t be the case for me.
So far I’ve done the things many of you have written about here to preserve my remaining kidney function for as long as possible, like switching to a plant-based diet and cutting out excess sodium, potassium, and phosphorus. Meanwhile my numbers and clinical status keep deteriorating no matter what I do.
I have come here looking for advice from any of you who are in a similar situation, or who have loved ones who are. I’m doing my best to enjoy the time remaining to me. Although I have adjusted reasonably well to my situation, unfortunately my family has not. Every time I try to bring up the future, they fall apart. I’m getting to the point where I’m going to need hospice support, but whenever I mention the idea of hospice or palliative care, all of their suffering makes me feel guilty and we talk about something else.
If any of you know any helpful approaches to take when discussing end-of-life planning with reluctant family, please share them. Any suggestions would be greatly appreciated – thanks.
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Havik
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It is a very tough road for all and it be quite lonely. I worked in Hospice and often the family has a harder time dealing with the end of life care than the patient. Think about it. You are leaving them. I get it. I have been dealing with my husband accepting just the changes in my life from my illness and he doesn't do well with it. But I have made the plans necessary in case something happens suddenly or whatever. I have done it more for me to know I am not leaving a mess behind. (Not that I am near death, but you never know.)
The best thing I can suggest is that you set up your palliative care now and hospice team and have them work with your family as well. Remember, you can come out of hospice. All it is is comfort care and it changes the payment structure for insurance. Talk to your doctor about getting that in place and getting social work to help with the family. It is part of the deal.
Stop feeling guilty. I would actually tell your family that they are making things harder for you. I sat my hubby down and asked him outright, what are the things you are scared of? Most of it was the upkeep on the house and being able to take care of me physically. He has health issues of his own. So.... I had all the house issues fixed like a new furnace and roof and so forth. I am teaching him all the things I do for maintenance and bills and stuff. We have worked with our lawyer, and I have in place all the documents for my passing such as a will and health proxy and DNR. I am working on a specific list of who gets what. My in-laws are prepared to step up and support him. And since I worked in homecare, I know that won't be an issue if I get incapacitated. I covered all the bases of his concerns. It made a difference for both of us.
Lastly, we are hear, here for you. It is easier sometimes to talk about our fears and worries to strangers, and it is extra comforting to know they get it. Your family is watching you travel on. I am not sure what your beliefs are but if they are religious, then ask your pastor, or priest to come sit and have a chat with you all. If you are not religious, (like me) then explaining that we all we travel on to a newer place and we will all be together again. I have done a lot of reading on near death experiences and what happens when we die. Theorists from Einstein, Dr. Moody, and Edison and much more all believe we "travel" to a different plane of existence. That we are energy and energy cannot be created or destroyed. And energy, once in motion stays in motion. So we, our soul or conscious energy continues on. Just some of my thoughts on the subject. And when I shared my feelings with my family, it helped a bit. My husband is Catholic and believes in heaven.... but my Step-daughter is more like me. And her comment when people ask how she feels about "things" is that she knows I will always be there, "haunting" her for the rest of her life. She is absolutely correct. 😃
Bassetmommer! Thank you so very much for your reply! I appreciate your compassion more than I can say; I also appreciate your concrete suggestions and encouragement. In one day, I have gone from feeling totally alone in the middle of this unhappy situation to feeling heard and supported. Please know that your words have made a huge difference to me, and I thank you from the bottom of my heart for sharing them.
I am sorry you are going through this illness with limited options. I can share with you our story… at 69 my husband was told he needed a kidney transplant or dialysis. He was only a candidate for transplant through a live donor and at 69 he felt there were others who needed a kidney more than he did. He started nightly PT dialysis. It has been two years now. He since has lost his sight due to diabetic retinopathy, neuropathy in his hands and I at 61 have become his full time caregiver. I share this to let you know the only way we get through every day is our faith in Jesus Christ. We both know we have the assurance that we will be with Jesus in Heaven when our days on earth are over. We will also see each other again. Does this mean there are no frustrations or tears? Absolutely not ; however we know God will never leave us. I also encourage you to speak to a Pastor or chaplain with hospice. We prayed for you. Feel free to respond with any questions.
Curious, thanks very much for the encouraging words, and especially for the suggestion to consult with a chaplain/pastor. God bless you for sharing your strength with me, even though I'm a total stranger.
My father had CKD. Like you, his doctors didn’t see him as a dialysis candidate as it wouldn’t improve his quality of life. However, my mother wasn’t ready to let him go. Dad talked with his nephrologist about this. Dad’s question was approximately how long did his nephrologist think he would survive on dialysis… Dad’s heart was very poor. Hypertension, heart disease and ultimately heart failure were the catalyst for his CKD. Consequently, dad realized that he wouldn’t live long on dialysis. He further expected he would pass from a cardiac event. But Dad thought that giving Mom another 6-8 months might be enough to help her come to terms with his passing. He wanted to do this for Mom… He and I talked extensively about this. I went to most of his nephrologist appointments with him. So, I was at the appointment where Dad talked with his doctor about this.
They decided to pursue in-home hemodialysis. (This was more than 40 years ago.) My mother and I went through training and served as his dialysis care partners. This did seem to really help Mom. She came to understand exactly what life on dialysis was like for Dad. He had always been so social but was essentially tied to dialysis and felt so poorly between sessions. She hated seeing him have to spend so much time home alone as she worked. She and I talked about this numerous times. Meanwhile, Dad helped her prepare for a life without him.
Thankfully, Dad passed away while in the hospital for a series of labs. He had called for the nurse to help him get up to go to the restroom. When he stood up he slumped to the floor saying, “I guess I’m weaker than I thought I was.” Then he was gone; just like that. Fast with apparently no pain. His doctors told us that his heart had just stopped beating which wasn't unusual for dialysis patients (at that time).
By then we had plans in place to support Mom. She was finally ready to plan for all of this 4-6 weeks after Dad started dialysis. While it wasn’t easy for her and she missed him terribly, she followed the plans they had made and slowly picked up the pieces of her life crafting her new normal without Dad.
Ten years later Mom battled colorectal cancer ultimately loosing the battle. She fought bravely. She wanted to live for her children and grandchildren as well as her siblings. As I sat in the hospital with her after they discovered that the treatments hadn’t worked and her entire abdominal cavity was “packed with malignant tumors” she looked at me and asked, “Would you be alright with me discontinuing treatment?” I remember saying that I didn’t think that that was the right question. I then asked if she wanted to stop treatment. Chin quivering, voice shaking and blinking back tears, she shook her head yes as she said, “This is no way to live.”
At that point my job became supporting her through end of life. As one of her sisters, a retired nurse, said, “Your mother is busy dying now. She’s the focus. We’re here to support her through this journey.” We did our best to make Mom’s final months good. I wanted her to be able to see all her elderly siblings if possible. We managed it. We had a small family reunion with her children and grandchildren only. My sister and I took turns stayiong over night with her. She was so weak and had difficulty staying awake. We cooked and cleaned for her, looked at family photos, and watched A LOT of old movies. I’d rent them and bring them to her house. If she dozed off I’d pause them. We’d pickup where we left off when she woke up if she wanted. Ultimately we went to visit her in comfort care, where she wanted to be at the end.
While I have many cherished memories of both Mom and Dad, it was the greatest honor of my life to be there for them as they each battled end of life medical conditions.
Hopefully your family will be able to come to see that this isn’t about them. It’s all about you. They have critical roles to play in all of this, but you’ll be at the center of it. It really has to meet your needs first. My aunt was absolutely right…now is the time to support you and walk with you as you make this final journey.
Jayhawker, I don't know how to thank you for taking the time to share your family story. You're giving me a lot of hope and courage, too, by illustrating that family members can come to feel something positive about the process of saying goodbye. I hope to be able to help my family feel better about my end-of-life decisions; you have given examples of how this happened in your family. I'm so grateful for your personal response.
Hi Havik, you have touched my heart, I can’t imagine what you are going through. You are facing the most important challenge you’ve been through so far but, that’s what we are for, to go down the road with you and to remind you that even that this sis a tough road all people around you will do whatever they can to help you no matter what because of how much they love you. Our human nature make us hold on to our loved ones, but because of that love we learn to love them more to open our arms and let them go. Talk to your social worker, there are options of professionals (Thanatologists) that can be a huge help talking to you and your loved ones about navigating these times in all aspects. You have been so brave and strong that you and your loved ones deserve to be enjoying the time together, it doesn’t matter how much it is. You will learn as well to delegate in order to concentrate for this new journey. As a writer you will have time to put in words your feelings and to let every single one of your loved ones what a joy it has been to have them in your life. Don’t stop to think what you will loose, enjoy what you have now and get the help you need to plan and provide for them as you want. This is your time to do what your heart desires, this is the time to enjoy golden time with your loved ones, this is your time. Thanks for being brave, for sharing this with us and to let us write back. Your energy will guide them. Us as patients, caregivers and or family members will keep you in our thoughts wishing you to have tons of new good memories and joy surrounded by the ones you love. This is your time, I’m sure you will get them on board with whatever you need
Erifre, thanks very much for the reply and for the words of advice. You mentioned some specifics that hadn't occurred to me, but that I think will really help me, like making an effort to learn to delegate tasks so that I can concentrate on what's most important to me, and like making sure I take this opportunity to let my family members know how much joy they have brought me in this life. I appreciate your encouragement very much.
I'm not sure what all you need but check out Compassionandchoices.org. They are the non=profit that advocates for death with dignity. They have an end-of-life packet that covers everything, and I mean EVERYTHING, that you need to look at and consider when that time comes. It is free too.
jodaer, thanks! I'd never heard of Compassion and Choices, even though I'd scoured the internet for resources already. It's a wonderful site, and it provides useful tools that I know will make my tasks easier.
Sometimes we have to remember to Let Go and Let God.....
Talking about Death and Dying is one of the most complicated discussions we all endure...yet it is the one thing we all have in common...every one of us...
I am 65 and on Dialysis...I know my days are numbered....but i have had a great life and own so many fond memories ..I can hardly complain when so many never even made it out of the womb..I try not to concentrate too much on my passing.. but rather about what I have passed on....and I think I did a pretty good job that so many love me and will miss me...what a gift to have been here at all....
RhenDutchess123, you wrote: "I try not to concentrate too much on my passing... but rather about what I have passed on...." I want to thank you for your encouraging post and to let you know that you have passed on to me a gift of spirit and positivity. Thank you for sharing your perspective.
Hi Havik, and hi to everyone one else on here.I feel almost reluctant to post on here, and particularly in your case, which is very different from mine, but, strangely enough, we share the same problem, but from very different aspects.
I am 74, have been on haemodialysis for nearly 18 months now. I have been told that I am not suitable for a transplant, because of cardiac problems. I was made to feel by my wife and my two sons that I should pursue the transplant route and try to get the doctors to reverse their verdict in my case, and I did try, for the family's sake.
The problem is though that I have suffered bady from depression for the most of my life, and regret to have to admit to several attempts to end my own life - for which I have been made to feel incredibly guilty ( mostly from one of my sons).
I told my wife and sons that a transplant is not an option, although, when I pursued the idea with the last consultant I saw, he said that he would start the process if I insisted, but that the tests in my case would be numerous and extremely thorough. I feel extremely guilty for that misrepresentation of the real facts, but honestly felt that all the tests I would have to endure, coupled with the warnings of the dangers of the anti rejection medication I would have to take would all be too great considering this would be something I didn't honestly want.
I have had awful problems with blood pressure drops during dialysis, and for at least 24 hours after treatment, even though I am taking the maximum dose of Midrodine which the consultant prescribed. As far as I am concerned, having three four hour session a week, life is incredibly hard for six days each week; the only time I feel reasonably well is when I have two days off at the weekend; on my second day off, I feel reasonably normal, but that is one day a week; for the rest of the time, I struggle as best I can to do the things I am expected to do, despite feeling weak, exhausted, with very little energy.
I feel terrible complaining about my situation, considering yours, and others like you. I apologize for being in a situation I am sure you would appreciate, if it was a possibility for you.
When I have, in very dark moments, mooted my wish to come off dialysis to my wife, and let nature take its course, I have been made to feel incredibly guilty for such thoughts. My wife has made me feel that I must continue, for hers and the two son's families sake.
I feel that the cost, to me, of continuing treatment for the sake of others is incredibly demanding, considering I get very little out of life, and relish the idea of being able to stop the awful treadmill on which I am on. I even think that my wife would be much better off if I did die - she loves travel and I feel incredibly guilty for denying her her pleasure - although I know that it is possible to travel, once my dialysis sessions settle, without the regular problems caused by the low blood pressure. I have crashed a few times, passing out and having to be given oxygen. The idea of having dialysis abroad, or on a ship is horrific.
In conclusion, please forgive me for my post; I just felt I needed to be able to be wholely honest about my predicament, even if I am taking to someone who deserves so much more than I. I feel for you in your predicament, and apologize for hijacking your very sad situation to air my pathetic problems.
Hi Mich. I’m sorry you’re facing such difficult challenges with your health. I don’t know what it feels like to be in your situation, and I know this isn’t really a response to the main points of your post. However, I do have a pressing observation to make: you speak about depression, and I feel like you owe it to yourself to address any depression before you attempt to make life-changing decisions such as discontinuing dialysis or declining a transplant.
You don’t need me to tell you that depression changes the way you look at the world. When someone’s depressed, they can’t see clearly and dispassionately; it’s like a darkness that settles around you that you can’t see through. How can anyone make a clear-headed decision like that? You can’t know what to do until the darkness recedes a little and you can see where you’re going more clearly. If you’re in treatment for depression, stick with it and maybe explore ways to enhance the effectiveness of the therapies you’ve chosen, and if this involves finding a new therapist/counselor/chaplain with a different approach, then find one.
I know it’s hard to muster the energy and enthusiasm for such work, especially when you’re depressed, but to repeat the topic sentence of my first paragraph, I feel like you’re cheating yourself if you don’t adequately address any depression before letting it make big decisions for you, decisions most properly made with an unclouded head and heart.
I know that’s a lot of unsolicited commentary. In your post to me you didn’t ask for a reply. Thank you for reading through this anyway. God bless you and good luck.
Hi Mich, Thanks for sharing your story with us, and, there is nothing to forgive. I'm in a somewhat similar situation except my family is supportive of my decisions. I'm not sure if I want do dialysis or not but am leaning towards not. While I appear to be a "good 80" as one of my doctors put it I'm not. I have 2 major conditions other than CKD, diabetes and copd. On top of that I have chronic, random pain which is getting worse. It makes it tough to do things and to enjoy life.
For what it's worth I totally support your decisions of going off dialysis. Is there any way to reason with your family? Maybe an outside source, minister or social worker. I don't mean to offend but it seems to me they are selfish ones, not you. Best of luck to you.
My heart goes out to all of you considering end-of-life issues. It's a subject that's very hard to address in our society and it breaks my heart when people are afraid to bring it up and prepare for it well. I will never, ever stand in the way in a person's decisions on the matter to stay or to go. As an older lady now, I have had several relatives and friends who have passed away - some easily and some with difficulty. To prepare for a gentle departure, please keep in mind that as kidneys fail, most will no longer process water so extreme swelling can occur, things like a pacemaker can amplify problems since no one can legally turn it off, and so forth. Then, even though one isn't on dialysis, dialysis at the end of life might be a welcome relief to relieve symptoms. While prophylactic dialysis isn't possible with hospice care, it can be an option with palliative care. Sometimes passing away from kidney failure can come quickly, other times it may be very slow and hard - it was that way in my husband's family. So simply look into all aspects of this so things go smoothly and easily. Those of you considering this now, you're very honest and brave. May we all have similar initiative in examining and preparing well for leaving this life easily and peacefully when that time comes. Hugs to all.
Darlenia, thanks for the compassionate, candid and practical post. You discussed several topics I've considered but haven't been brave enough to mention to anyone yet. My faith tradition and life experiences have taught me that death is indeed the appropriate and inescapable conclusion for a life lived, and I don't resent that. Instead, I'm grateful that I have had the opportunity to consider my own mortality in advance. The truth is that knowing that my remaining time here is short has given me an appreciation for living that I never had before; ironically, I have never been happier in my entire life. Now I have a much better sense of what everything is really worth, and I make a point of savoring the blessings of every moment, even ordinary ones. I permit myself to indulge in things I truly love, like fine old movies and fresh fruit, and I no longer feel obliged to carry on with activities that don't really matter to me, like anything that involves any sort of keeping up appearances.
I'm an old hippie burnout nowadays, but back in the seventies when I was a young hippie optimist, I struggled to understand my place in the universe. My two major takeaways from that time: one, too much orange sunshine will get you kicked out of your college housing; and two, mindfulness and presence in the moment can make you happy and can bring meaning and understanding to your life. I studied the teachings of a famous guru who had a little paperback book called Be Here Now. It was good advice then, and it still is today. Life may be short, but when you make a point of paying attention and drinking it all in, it's rich and satisfying. That satisfaction -- and the enjoyment that comes with it -- are the gifts that CKD has brought to me. If I were perfectly healthy, I would have missed them, and when I eventually died, I think I would have felt unfulfilled.
Hugs to you too, Darlenia, and thanks again for your thoughtful post.
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