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?
    Chris M 2000 likes this.
  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.