Removed my mom from life support. Need opinion/reasurance.

  1. hi. i really need your opinions on this, please tell me what you think.
    my mom passed away about 7 months ago. she was very sick. she had m.s, had a heart attack, had heart disease, was diagnosed with diabetes a month before she passed, along with many other things. she had pain 24/7, was constantly tired. she was only 43. she was very sick, especially more-so at the last few months. she couldn't bathe herself, couldn't go up/down stairs, couldn't really controle bladder anymore, could barely walk, and she never left the house. she began having difficulty breathing and even stopped breathing once. she went to the hospital and was put on life support twice. she developed pnemonia. (not from the life support). the doctors said that she would never get better. she had a feeding tube put into her nose. the doctors said that all they could do for her was so perform a tracheotomy and put a feeding tube into her stomach. because of her m.s all the food/liquid that she would consume would fall directly into her lungs and she would aspirate. she was very very sick and wouldn't get any better. the doctors said that even with the tracheotomy she wouldn't still be back and forth on and off life support for the rest of her life. my family made the decision to remove her from the life support. the past month before she even went into the hospital she had been saying "i just want to go home, i want to see my mom and dad, i can't do this anymore." we removed her from the life support and she passed about about 4 and a half hours later. we did this out of love because she was sick and knew she wouldn't recover fully from this... but now i worry: are we going to go to hell? is it okay what we did? is that our place to do that (god). etc...like is my mom being punished because we did this? i just worry so much. any bodys opinion would just be wonderful, please tell me what you think. thank you, in advance, so much.
    jennie
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  2. 20 Comments

  3. by   ZASHAGALKA
    Of course it's ok. I'll tell you what I tell patients pondering that decision: there IS no right or wrong answer; there is simply a BEST answer.

    Of course you aren't going to hell for such a decision - this isn't euthanasia - you didn't kill your mom, you stopped actively intervening and let nature (God) take his course.

    As free willed humans, we have the power to defy nature. We have amazing technology. But just because we CAN do something doesn't mean that we Should.

    There are things worse than death and suffering needlessly with no hope of improvement is one of those things.

    Besides you need to understand that this wasn't your decision to make. It was your mom's, and you made it clear that she made her decision. The doctors didn't ask you what you wanted; they asked you, as a surrogate decision maker, what SHE would have wanted. That's an important distinction.

    I'll leave you with a Bible verse that I think is appropriate: Ecclesiastes 7:1 "A good name is better than fine perfume, and the day of death better than the day of birth. It is better to go to a house of mourning than to a house of feasting, for death is the destiny of every man; the living should take this to heart."

    Take it to heart. You didn't do the wrong thing. You didn't do the right thing. You did the best thing. And that's enough.

    Be at peace with yourself about this as it was your mom's decision - not yours.

    ~faith,
    Timothy.
  4. by   directcare4me
    Quote from ZASHAGALKA
    Of course it's ok. I'll tell you what I tell patients pondering that decision: there IS no right or wrong answer; there is simply a BEST answer.

    Of course you aren't going to hell for such a decision - this isn't euthanasia - you didn't kill your mom, you stopped actively intervening and let nature (God) take his course.

    As free willed humans, we have the power to defy nature. We have amazing technology. But just because we CAN do something doesn't mean that we Should.

    There are things worse than death and suffering needlessly with no hope of improvement is one of those things.

    Besides you need to understand that this wasn't your decision to make. It was your mom's, and you made it clear that she made her decision. The doctors didn't ask you what you wanted; they asked you, as a surrogate decision maker, what SHE would have wanted. That's an important distinction.

    I'll leave you with a Bible verse that I think is appropriate: Ecclesiastes 7:1 "A good name is better than fine perfume, and the day of death better than the day of birth. It is better to go to a house of mourning than to a house of feasting, for death is the destiny of every man; the living should take this to heart."

    Take it to heart. You didn't do the wrong thing. You didn't do the right thing. You did the best thing. And that's enough.

    Be at peace with yourself about this as it was your mom's decision - not yours.

    ~faith,
    Timothy.
    I would add to this, but there is nothing I could say that would express my thoughts as beautifully as Timothy has. I feel the same as he does, and I also know that your mom would not want you to suffer guilt over her own wishes and unavoidable destiny. You have been through an experience that we all hope and pray not to have. It sounds to me like you have been a brave and loving daughter, and I wish you peace and serenity. Have a good day tomorrow.
  5. by   papawjohn
    Hey JennieIrene

    My first wife (after we were divorced) died of cancer only a little bit older than your Mom was. Our two daughters and Hospice (ohhh!!! Thank you all Hospice nurses!!!!) helped her through her last months. (My present Mrs and I moved from Md to Tenn to be near my kids for this.)

    I was shocked at how depressed her death made me!! We'd been apart for quite a few years. We'd had lots of anger. Still-once you give your heart you never get all of it back, I guess.

    I'll tell you what seemed to help my daughters and me. We changed our mental picture of their Mom. We tried, conscously made the effort, to remember her as he was before she was sick. Because, I told my dtrs--she isn't sick anymore. She is in perfect health now and in perfect peace.

    Remembering her as sick, you want to do something--to save her. Remembering her as in perfect health and peace, you only miss her.

    They scattered her ashes in the Smokey Mountains. They're both doing fine.

    Papaw John
  6. by   NRSKarenRN
    Quote from jennieirene
    but now i worry: are we going to go to hell? is it okay what we did? is that our place to do that (god). etc

    your answer is clearly here in your mom's statement:
    the past month before she even went into the hospital she had been saying "i just want to go home, i want to see my mom and dad, i can't do this anymore."
    your mom was telling you that she couldn't go on living with her health issues and wanted to go home to her heavenly home. i've taken care of many patients on 30 years who've uttered similar statements. giving a family member permission to die is one of the hardest things thing you can do....but also a great gift too.

    when my grand mom was 99 1/2 she contracted pneumonia had only been in snf ~ 6 months. one week after return from hospital she was increasingly weak, i asked her if she did she want to see 100 " i'll try to hang on if you want me too, but i'm so tired, ready to go home". as soon as she said that i realized it was my needs i was thinking about, not hers. told her i loved her, and didn't want her to suffer and it was ok for her to join pop-pop. she died within the week.

    my mother in law had valiantly fought ms and ovarian ca--lived 10 years post ca diagnosis. she almost died 3 times but pulled through over past 2 years. when the blood transfusions were every other day for 2 weeks, triple ivab, 10 different specialists to mange care i old my husband things were not improving and we had to tell her it was ok to leave us. both my husband and i told her it was ok to leave us, we'd have such great memories to hold in our mind and heart. it was the hardest thing i ever had to do as a nurse.

    unresponsive, i had my then 4 1/2yo brought to hospital to see her for last time as they were so close i knew he needed to have closure with her. he kissed her and told her he loved her and bye bye. thirty minutes later she was sitting up, and within an hour shared a milkshake with him. after he left she told me, she wanted to "come home". i told the docs no more aggressive treatment and made arrangements for homecare: low airloss bed, iv diluadid pump via her portacath and 24 hour nursing care as bedbound. thought she would last for few weeks with hospice at home. she arrived home friday afternoon --kept saying how glad to see us but wanted to go home. kept reinforcing with her she was home at her house. "i'm just so tired, but first time pain free in years". she died monday 11 am.

    both of these experiences along with my time in hospice reinforced to me that when people say the want to go home, they are really talking about their eternal home. some have even said family is calling for them--have had entire one sided conversations take place in my presence with patient looking like they are seeing and talking to family member in the room. others very religious have told me god's calling them.

    seems to me you did everything right in listening and hearing your mom's final wishes. know that it took me over 2 years to accept my mil passing and i'm tearied eyed as i type this , 16 years later.

    here's a {{{{{{hug}}}}} to help in healing. may you find peace.
    Last edit by NRSKarenRN on Sep 23, '05
  7. by   VivaLasViejas
    I really can't add much to the beautiful sentiments already expressed here. Just know that God made His decision long before you even became involved and knows your heart was in the right place. And I think you can be absolutely certain that your mom went to a place of light and peace, where she would never again experience pain or suffering or the indignities of being ill.

    You have nothing to be ashamed of, nothing to be sorry for. May God grant you peace within your heart.
  8. by   crazy4Him
    Hi Jennie, I am new here but I felt strongly that I needed to reply to your post. First off, you certainly are NOT going to hell. I had a very similar situation with my father. Although he was much older he too didn't want to go on. He had many health issues and was on dialysis. After my mother died he had a very hard time with it emotionally and mentaly. He developed a staff infection, his shunt becomed clogged and just wanted us to let him go. The doctors suggested that if we were ever considering taking him off dialysis this would be the right time. I told him that "there was No Way, he would die. "I couldn't play God". The doctor's response to me was both hard for me to take but a huge revelation, not to mention very freeing. After my statement he told me, "Why not, you played God when you put your dad on dialysis?" I was speechless, I never thought about it like that. Needless to say, after much discussion with the rest of the family and my father, we all decided to not continue with dialysis. He died 8 days later. As I pondered on all that was said and what I watched with both him and my mother's last years here on earth, I realized that modern medicine can be good and bad. For healing purposes it is wonderful and amazing but for those who are chronically ill and the elderly I am not sure that modern medicine is always in their best interest. I am currently in the LVN Program here in S. CA and doing my clinical in an extended care facility. I see the majority of patients there that are being kept alive by modern edicine and technology. Most are miserable and wish to be let go. Most of them would not be alive and in their present condition just 30 years ago because we didn't have the technology then that we have today. I believe that sometimes we need to leave things alone and let them take their natural courses. Please don't get me wrong I believe in the technology today; it has saved and kept people alive, it's is just that for those whose life has no hope of being independent, productive, etc., it needs to be reconsidered. I hope this all makes sense to those reading it. I don't believe in euthanasia but I do believe in letting nature taking it course.

    Allison
  9. by   talaxandra
    Hi Jennie,
    first I want to offer my condolences - this is just such a hard thing to have had to go through.
    I work on a neurology unit, and I've looked after patients with advanced neurological diseases like MS. The decision to cease treatment is never easy, especially when the person is young. Sometimes the person and/or their family decide to continue through until there's nothing else that can be done; often that's the right choice for them, though sometimes family members have spoken to me later and said that they hadn't realised how much worse things could get.
    More often, though, the person and/or the family decide that the fight is too hard and the cost is too high. That it's the right decision for them doesn't make it any easier or less painful.
    The decision you made was made out of love - your mother's suffering was to no purpose, as she would not recover, and it was what she wanted. You didn't cause her death - the MS did; you just allowed her to go at her time, rather than letting medical intervention continue until it reached its limits.
    While I of course can't speak for God, I can't believe that He would want your mother to suffer, nor condemn you for a decision that was made out of love and compassion.
    I know that it can feel like stopping treatment is tantamount to causing death, but I say again - MS killed your mother, not your decision.
    I hope this helps.
  10. by   Dalzac
    My mother died in 1983 after we had taken her off the ventilator after a cabg that went horribly wrong (no ones fault) she was brain dead but the night before her surgery she told me if something happened and she was brain dead to take her off the vent as soon as possible. I think she knew something would happen. I followed her wishes but my sister always felt it was too soon and we should have waited for a little while. I was an ICu nurse I knew there was no hope. but because I promised her I would do what she wanted ,I never felt any remorse or guilt. That was 20 years ago I still feel I did the right thing. Now my sister is in the same situation with her son she has left him on a vent for 2 yrs with no positive signs of life. she grieves more than a person should, but last night she called me to tell me that they have decided to stop his tube feeding. For the first time in 2 yrs , my sister sounded at peace. She has mourned him since his accident. that is a long time. but now she feels serene. and she told me that it was peace even since mom's death. Death is a part of life. Mant of us in here are ICU nurses and we see a fair amount of deaths. I have never feared it. It is every ones destiny. I probably don't make much sense. You will not go to Hell, you did a very loving thing for your mother.
  11. by   Race Mom
    Although I have never had to experience the decision making on stopping life support, my sister had been there 1 year ago with her 14 y.o. son who had an annyerism and two weeks prior to that our friends made the decision for their 2 y.o. after a routine heart surgery.

    One thing I learned from their losses, is that you can't be selfish and make the decision based on how it will affect you. That is not proper.

    Thank you for putting your feelings aside and making the desicion based on what your mom wanted. You are a beautiful human being and I'm sure God smiled down on you. How did you REALLY feel after you made that decision (leaving out your personal loss feelings for your mom)? I bet a wave of peace came to you, provided by the one and only. You just wish you never had to make that decision.

    Lisa
  12. by   onmyway06
    jennie,
    you are a good person. don't feel guilty. i can't speak for your mom, but imho i believe that your mom would not have wanted to 'live' on life support. i am sorry for your pain. you have my deepest sympathy. please stay strong. :icon_hug:
    Quote from jennieirene
    hi. i really need your opinions on this, please tell me what you think.
    my mom passed away about 7 months ago. she was very sick. she had m.s, had a heart attack, had heart disease, was diagnosed with diabetes a month before she passed, along with many other things. she had pain 24/7, was constantly tired. she was only 43. she was very sick, especially more-so at the last few months. she couldn't bathe herself, couldn't go up/down stairs, couldn't really controle bladder anymore, could barely walk, and she never left the house. she began having difficulty breathing and even stopped breathing once. she went to the hospital and was put on life support twice. she developed pnemonia. (not from the life support). the doctors said that she would never get better. she had a feeding tube put into her nose. the doctors said that all they could do for her was so perform a tracheotomy and put a feeding tube into her stomach. because of her m.s all the food/liquid that she would consume would fall directly into her lungs and she would aspirate. she was very very sick and wouldn't get any better. the doctors said that even with the tracheotomy she wouldn't still be back and forth on and off life support for the rest of her life. my family made the decision to remove her from the life support. the past month before she even went into the hospital she had been saying "i just want to go home, i want to see my mom and dad, i can't do this anymore." we removed her from the life support and she passed about about 4 and a half hours later. we did this out of love because she was sick and knew she wouldn't recover fully from this... but now i worry: are we going to go to hell? is it okay what we did? is that our place to do that (god). etc...like is my mom being punished because we did this? i just worry so much. any bodys opinion would just be wonderful, please tell me what you think. thank you, in advance, so much.
    jennie
  13. by   MDSlady
    You absolutely did the right thing.... you have to think about the quality of life that she would have wanted.....I know it is the toughest decision that you will have to make in your life, but you did the right thing.. Thank god she had a daughter like you. I only hope that the daughters I have, make the same decision. God be with you.......
  14. by   ?burntout
    jennie,

    it is so normal to worry after what you and your family have been through. sometimes it is hard to make choices for those we love although sometimes we know they are the right ones deep down in our hearts. it is agonizing to let our loved ones go.

    three years ago, my husband and i took our son off of life support. blake was born with congenital heart disease, along with a couple of other birth defects. he did so well for a baby born 8 weeks early and to have all of these problems, but eventually his little body just couldn't take it anymore. blake had to be coded twice in the very early hours the morning he died and we were told that if he was to code a third time, he wouldn't survive it. so we told blake's doctors and nurses to not resuscitate him if he slipped away from us again. later that morning, blake's heart rate started slowing down more and more and i knew deep down that it was time to let him go, in peace and i believe he was telling me it was time too: his daddy and i held him and we asked the nicu staff to take the ventilator off; a few minutes later, he earned his angel wings. he was 12 days old.

    i love and miss my son more than words will ever say. i wish every day that he was here with us and that will never stop. but i know where he is know that he is healthy and happy and that gives me a sense of peace.

    i don't think you will go to hell. you will not be punished: you listened to your mother and abided by her wishes to let her go "home".

    it is good to talk about your feelings. is there anyone you can talk to like a support group or anything. sometimes talking to those who have been where you are now helps so much.

    many hugs,
    ginger

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