Struggling with Decision to end Mom's Dialysis

Discussion in 'Finding it Difficult to Move Foward' started by AndyIrish, Aug 6, 2022.

  1. AndyIrish

    AndyIrish New Member

    My Mother, Lisa, died April 9th 2022 at 59 years old.

    My mom had what she described as 'jerks and seizures' in April.. she had myoclonus like I do, a part of Epilepsy which she and I both had/have - they ended up actually being small strokes which sparked a chain of events that led to her being in hospital and rehab for 10 weeks with horrible demensia and hallucinations abd.memory loss.

    I ended up being forced to take over her medical decision-making and have her declared medically and mentally incompetent.

    She was in endstage kidney failure - had been on dialysis for 8 years and it was becoming slightly less effective but the main issue was she was hsving constant horrible torturoys hallucinations. She was confibed ti a wheelchair befire this incjdent and had dtarted going blind to make matters worse. 3 months prior she lost a breast in her fight against breast cancer.

    After 10 weeks a very inciherebt team of doctirs and nurses at a rehab indicated they did not think she would be able to live independently and odds were better then not her demensia would remain and she would be sent to a nursing home for permanent resudence.

    My motger prior to all of this expressed she would ratger discontinue dialysis then be in a situatjon if ever being in a nursing home.

    She made a couple of mentions of discontinuing dialysis and then changing mind in stint in hospital and rehab - she didnt make much sense in the end.

    Eventually I/the Doctor called a hospice consult[__ its confusing... i called them in ovet her mental state and scheduled tge appointment... at the meeting the hospice rep said the Dictor called them in due to Mom's dialysis not working...]

    In the end - rather then drag it iut further and admit her to a nursing home, I told them to stop the dialysis. I wad umable to hold a full ck versatjin with my Mother kn this and have cknfidence she understood what was goijg on - I made the decision to stop her dialysis and out in hospice on my own.

    Mom wanted out of hospia/rehab - was happy to go home.

    I spent 5 days straight with her in her 1 vedroom apartment, awaje around the clock administering pain medication with my stepdad.

    The first day back home she called Hospice saying she would like to leave hospjce but by end of call said she was unsure.

    I dont think she ever understood she was in hospice or her condition.

    She slipped effectively into a coma... she woke for a few minutes the day begote she died... mumbled something about coffee... she hadnt been awake in 3 dayd.... i cried and held her and kneeled at her side begging her to 'tell me im not killing you, Mom... tell me, I'm not killing you...'

    she looked at me and in the hoarsest softest whisper said, '..no right call to make... love you'....

    It was tge last thing she ever said to me. She died the next morning.

    I was very close with My Mom but had not seen her much the last 6 months before hospitilization due to the Pandemic and my toddler and life changes... she had mentioned me not being a good son and missing her when she was gone...

    ... I do... I miss her terribly every day and will always wonder jf I killed her or robbed her of her time...

    .... my mother would always tell me she 'loved me more then life itself'... and I cling to that hope most days, praying that up in Heaven she forgives me for the decisions I made...

    I often regret making the decision and having done it feels like an anchor on my soul. I am torn om it - I was sure at the time I was honkring her most truest wishes and sparing her dignity at end of her days - but omce she was actually gone - that ratiinal decision is hard to reconcile with my heart and my soul and my mind...

    ... that part eats me up alive to the point I cant hardly think about it anymore... my family tells me I did the rjght thing... but they didnt make tge decision... I did...

    This wqs in April, 4 mo ths ago... I comfort mt StepDad by text occasionally... he sent me a Birthday card last month and I hadnt expected him to keep doing it and I cried.

    I want to talk to my Mom so bad its ohysically painful and I miss her so so veru much.

    My wife doesnt like to talk about these things and I just... needed a place to out it out ij tge world and mayve see if someobe else experiwnced something simiar or if they lost their Mom - how did you help make the Grief lessen over time?

    Her name was Lisa and she was the most amazing person I knew. Losing her was losing my staunchest ally - losing the only person in the world I knew beyond a shadow of a doubt would take a bullet for me, would die in my place... was the person who loved me unconditionally... I had even come out as Bisexual to my Mom in my teens and she carried it with grace... she was my ally even when I was in the wrong... I was the ultimate Mama's Boy...

    but it was important to throw her name out there for some reason - again, her name was Lisa and she was gentle and funny and caring and this world is so much lesser because she is gone from it. It breaks my heart my 3 year old daughter wont get to know her. Her birthday party was the day after Mom's funeral.

    Mom was able to give her her birthday presents on her fuest day if hospice at home though, last day she was awake - which was nice.

    ... I am... yea... just trying to find advice to lessen pain becayse it comes every day and more days then not I still have short, quiet tears roll out missing Mom and I was never the kind of guy to cry.

    How do I reconcile the decision I made with myself and does this pain lessen? Will I ever find forgiveness? I feel like I havent had a right to grieve her as if sge was in a car accident or died in a hospital bed or in ger sleep... she died becayse of something I controlled... I made a decision... I signed a paper that caused her to die...

    ... how do I live with that?
  2. Chris M 2000

    Chris M 2000 Well-Known Member

    It is very obvious from your text that you loved your mother dearly and tried your very best to make the right decision for her.
    Turn this over to God and tell Him how troubled you are. Tell Him you still feel so guilty. Jesus came because we are fallible human beings. He knew we could not help ourselves, so He came to help us. He promises if we confess our sins to Him, He will forgive them and we can put them behind us. I am not saying you sinned, but I know your heart is so troubled that you feel like you have done something wrong. Having all of these life prolonging measures puts the family in a very tough place of making decisions about someone else's life. Before all of this new medical knowledge, your mother would have just died with the conditions with which she was suffering without there having to be any decisions made. Your mother loved you very much and you love her very much.
    The pain of the loss will lessen with time if you just keep walking down this grief road. All of the feelings you are having are very normal. This guilt is so hard on your health. Give it to God. He is strong and can carry our problems much easier than we can.
    Take care of yourself. I am glad you shared about what a wonderful person Lisa is. She must have been very special and would not want you to be suffering as you are.
  3. barnettmollykmel

    barnettmollykmel New Member

    I do not have any advice. I just wanted to say that I had to make the decision to stop my mom’s dialysis in December 2022. She was 54 years old. She had been on dialysis for 8 years.
    My mom went in for a CABG and she did fine and was weaned off of the ventilator. Unfortunately, she aspirated after vomiting, while on bipap after being extubated. Because of this she started to go downhill. We couldn’t get her off of the pressors, which ended up turning her hands and feet completely necrotic. She also developed a fever, and ended up needing a tracheostomy because of having to be re intubated. She wasn’t tolerating her CRRT which was the type of dialysis that she was on ( it just ran a lot slower and pulled less fluid over time because we couldn’t keep her BP up) and I was told by her surgeon that she could make a “full recovery”. I guess to him this meant that she could literally just lay there and be alive.
    At the point that I called hospice in my mother was dependent on the ventilator, was going to lose her hands and her feet, she had a PEG tube, had developed a massive pressure ulcer on her sacrum ( that as a CNA I believed to be a stage 3), so she could not eat, wouldn’t be able to go home and care for herself ever again.

    My mom was a Nurse and we had talked beforehand about what her wishes were. She was adamant about not wanting to be in a nursing home. She actually had been talking to her doctors prior to the surgery about how miserable dialysis had made her life. It just made her feel more sick. she had told me before the surgery that if she couldn’t go home to be with the dogs (they were her life) then she didn’t want to continue receiving dialysis.
    Knowing that she wouldn’t come off of the ventilator and needed her hands and feet amputated and wouldn’t be able to even eat food or move herself around, I decided to make the decision.

    now, I know this is what she wanted, but I too question myself. I never got to hear my mom speak again after her surgery. The last time I heard my mom speak was when she said I love you right before she went back. Because of this I often wonder “what if she had changed her mind” I wouldn’t have known because she was sedated for most of the time she was in the ICU. That was on November 8 she aspirated on November 11 and she ended up passing on December 6 2 days after I signed the papers for hospice. She didnt even make it to the hospice facility that morning.

    I understand wavering on the decision that you had to make. I understand having to be the one to make that call and grappling with whether or not it was right.
    I know that there aren’t many resources for this particular issue. And I identify with everything you had said including the not being able to spend as much time with her right before everything went down.

    just know that I know how difficult it is. Even today, I question myself at times.

    I know that what I have said may not be comforting, just know that I found it comforting to find someone going through the same thing. Feel free to reach out to me anytime if at all you need someone to talk to.
    Chris M 2000 likes this.
  4. Suntracker

    Suntracker Active Member

    Hello, my Mom just passed to be with God 10 days ago. Even as I type that it seems surreal. She abruptly went into the hospital after she called 911 because she was hallucinating. What happened after that is unbelievable to me even now after I lived it all. I also ended up in the situation of being the decision maker. There was a time in the hospital when 3 doctors "met" with me in her hospital room to tell me how they didn't think she was going to make it. I don't know what they thought I would say but at that time I was in full fight mode and not ready to give up that my Mom would pull through. She did end up being extubated and I really thought that meant she would pull through. They even sent her out of ICU, but she ended up back within a few hours. I believe now it was just my Mom's time to go and be with God and her body was making the decision. The doctors were on FULL CODE to do all the tests and re intubate or resuscitate for a long time. I then could even see myself that she was on her way to be with God. I really don't think that once this process begins that it can be stopped. I ended up talking to this doctor that was compassionate. He told me about his own 83 old Mom that didn't want any heroics done to keep her here. I now see this as the right thing. I did not ever expect to be in this situation but when this doctor asked me if I wanted my Mom to be re intubated or resuscitated, I said no. After what we had gone through waiting for her to be extubated and then when he described the resuscitating, I knew deep in my soul that she would not be able to take that she was too frail and that it would even be cruel. To keep her in a state of being kept alive by machines or broken bones OMG NO. No, no, no. When I saw her, she told me with her eyes and body language that enough was enough. Your Mom told you that you "made the right call" so I think that is so incredible you can know now you did the right thing. All the testing they did on my Mom everyday was becoming too much on her and I made the decision to go to comfort care and then they called me that she was on her way and would I like to be there. I kept repeating over and over "I'm coming; I'm coming" as I got ready to go to the hospital to be with My Mom as she transitioned to God. I am still so sad she is gone but to be free from the body is to be with God. She is with God and my father and brother. I am scared now to go to her apartment to see it empty. For the last 5 months I was caring for her and responding to her every need since my brother passed to be with God. I came across someone/something that said God's grace fills emptiness. I am sure He does and will. Of course, I miss her and right now I was sad that I can't call her or go over and spend time like we were, but God gave us time to talk, and I see that now. End of life is different to me now. All the heroics to keep someone alive after their time seems like it just keeps the person in bondage from going to be with God. I started to read the book Final Gifts and it has many stories of families and what they go through, and it helped me learn a lot about the end of this life and moving to the next. That nice doctor said to me when I told him I think I am naive he said we all are, and no one really knows until they go through it. This website has been helping me each day when I come in and read and write I feel like I am healing a bit more each time. xoxo ~Heather
    MICHAEL2023 likes this.