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Mom passed, but I couldn't bear to be there at the end.

Discussion in 'Life After Caregiving' started by moonfx, Jul 26, 2020.

  1. moonfx

    moonfx New Member

    I lost my mother to cancer about a month ago. They believed she had pneumonia, which turned out to be the cancer spreading into her lungs. She became ventilator-dependant, and asked me to end her life support if she did not improve. We waited a while, worked with her doctor and a family member who is a doctor to do all we could before making that decision. I was able to visit her and be with her in person as they removed the life support. I'm orphaned at 27.

    I know it shouldn't feel this way, but I have so much guilt over not staying in the room with her until she passed. I was with her a long time while she was on the ventilator and for a while after it was removed, and that was when it got very hard. I held my composure for a long time, but the way she was was so painful for me to endure. I didn't want to be a sobbing, panicking mess in there when I intended to be supportive and guiding, so I stepped out for a break. I immediately broke down and rushed out of the hospital to my family (in COVID time, they only allowed one of us up at a time. everyone waited outside of the hospital). Her brother replaced me and stayed with her until she passed. I kept going back and forth on my choice to leave the room until I no longer had the opportunity to go back up. Even though I've cared for her for so long, I feel like I "failed" at this.

    For her safety I had to ask that people stop visiting and limit her person-to-person contact in mid-March. Our home health aide and myself became the primary caretakers.
    I have a full-time job and did not live at home with her; she didn't decline in health much until recently, so the plan was to finish out my current lease and then move back in.

    My parents and I cared for my grandmother through a painful and protracted course of dementia for nearly 10 years when I was younger. I saw the toll it took on them, and knew how much it had hurt me to be in that proximity. I thought I had found a good medium for myself in taking care of mom. Be there with her in person on the weekends to do full 24/7 caretaking, facetime, phone calls, and texting all the time otherwise. And yet I still feel so robbed of time with her, and angry at myself for not having the stamina to do everything or the money to quit my job and be with her more.

    I don't know what I'm hoping to gain by sharing all this. I know I did the best I could, and I desperately try to believe her friends and siblings when they say that I was good to her.
  2. RLC

    RLC Well-Known Member

    I am so sorry for the loss of your Mom. I feel your pain, and agony in your writing. And I know how that feels, it’s devastating and overwhelming. Your story makes me cry. I’ve lost both my parents, when my dad passed I was 36, and thought I couldn’t live a day without. More recently I lost my husband suddenly to a massive heart attack that took him in 2 hours. I went into shock, this was so unexpected. My daughter was 34 and my son 31. They’ve both had a difficult time losing their dad.
    You’re putting guilt on yourself, and I understand that, we all tend to do that to ourselves. But we shouldn’t. You were great support to your Mom. My Mom had heart surgery and I was one of the first to go in and see her after surgery. There were so many tubes and iv’s and monitors etc, all over her, I wasn’t able to stay with long, I stepped out of her room to compose myself, but like you I lost it. I leaned against the wall and sobbed and slowly slid down to the floor. All kinds of nurses and medical people ran to me. So I understand how it feels to see someone you love so much in so much pain. It’s so hard to watch. Because of covid you couldn’t have multiple people in her room together, so it all fell on you. With multiple people everyone would support each other and your Mom. But sadly that couldn’t happen. It’s so understandable to feel like it’s too much. You did the right thing for you at the time, and your Mom wasn’t alone, she had her brother by her side. Watching our loved ones pass is so very difficult. I know I won’t say anything to help you with the guilt you’re feeling, but you were and are a loving carding daughter to her. And she knew that. She felt your love. You honored her request and stayed by her side. Your loss is so recent, and we tend to over think and rethink and question and what if. We put ourselves through torture, and shouldn’t.
    Your Mom is still with you, she’s a part of you. She’s in your heart to stay, that’s not going anywhere. And eventually all the wonderful memories will bring a smile to your face. Be good to yourself and try to get past the guilt. Your Mom loved you and wants you to be ok.
    You did the right thing by writing your story, it’s cathartic. Keep visiting this site often, and continue reading and sharing stories. Everyone here knows the pain and understands how you feel.
    Sending you hugs!
  3. HankersKing6

    HankersKing6 Well-Known Member

    My heart goes out to you as I read your story. Your family even said you were a good person who did all you could for your mother. Don't be so hard on yourself. She knew you were there. I lost my mom to cancer two months ago. My siblings and I worked a schedule so she would never be alone. I prayed that when she did pass I would be there and I was. Thank God. But I also feel at times I should have sat with her longer. Taken more time to sing with her. Payed more attention the day she died and stayed in her room. I don't know. When you have done all you can with gratefulness that's all you can do. Cherish the memories and smile because if your love. Blessings! Be encouraged!
  4. KateIsNotOkay

    KateIsNotOkay Member

    I hope you come back and read the replies to you! I lost both my parents in the last 4 months, and I have similar feelings of guilt, even though rationally I know I did the best I could. You sound like a very thoughtful and caring daughter, and everyone should be so lucky to have someone like you to be with them. I get angry reading about how some people planned it all out, sat peacefully guiding their loved ones - because I was a mess when my mother and father died. My mom had an operation after she had sepsis (it was very sudden), and although I stayed all day and into the evening, I stepped away and was gone when she coded - my sister was there and saw it by herself, which I feel guilt about. We stayed with her after that, knowing she would pass when they took her off the vent, and we couldn't stay the final 10 min after they extubated her. We were ragged and had sobbed over her and told her goodbye. But I flagellate myself over not being there at the very end.

    I then took care of my father immediately after that, on hospice. He had a prolonged death, and there are many things I wish I had done for him, things I wish I had not done like tests he ended up not needed. This grief process seems to entail a lot of beating oneself up about "should've, could've, would've." So when I get in that loop, I try to remember things I know I did right, and let myself off the hook for things I could not handle in the moment, trusting that my parents loved me enough to understand. I hope you can do that, too.

    I'm so sorry. You are much too young to be orphaned. Wish I could give you a hug, and I hope you have an aunt or maternal figure or best friend in your life to give you some comfort. The chat room on here is helpful, if you ever want to come by. Keep breathing in and out. You did not "fail at this," I promise you! Your love was no doubt a great comfort to your mom. I wish you and your brother peace.

  5. daddysgirl0807

    daddysgirl0807 New Member

    I write this with a heavy heart .I am the only child to my parents and a single mom to my twin children.I hv been a daddy's girl right from the beginning .He has been the only person who never let me down and was closest to him.I married a narc who walked out on me and my kids aft he was caught cheating even then my dad was there fr me.my dad was my rock.even aft my marriage my parents stayed with me as my mom was unwell with kidney problems and i used to tk care of her with my dad.Mom passed away in 2007 and in 2016 my dad was diagnosed with prostate cancer .all thro the treatment phase i ensured he never got to know his diagnosis till he got his last round of radiation .i cared deeply abt him.but i hd been depressed with the long divorce battle tht i was fighting with my narc ex and it took its toll on me there were times when i lost my cool with my dad said a lot of hurtful things etc and repented it .In 2019 my dad got dengue fever and he was 79 .he seemed to be improving but turned for the worse and though he seemed bit sleepy etc at the time of discharge I got him home thinking it might be weakness and tht evening i said a lot of hurtful things to him as i was burned out staying awake for 7 days back to back in hospital and with my two kids alone at house 24X7 .I was exhausted and stressed beyond words .But by noon i understood he was worsening so we again took hin to hospital only to shift him to ICU as he had developed guiillan barre syndrome I was shocked .he was on ventilator for 28 days and docs tried convincing me to pull him off vent i didnt budge .Ultimately he came off cent and on oxygen but though out of crisis had come in a vegetative state he had a food pipe and was with tracheostomy and could not move his hands or legs.he was brought home with a ICU created at home with 24X7 nurses and me by his bedside every night my dad would be serious with some or the issue and in those 12 days he was at home we had to rush him to emergency care to the hospital thrice .finally when he became tachycardic and we rushed him to the hospital with pneumonia ,the ICU doc advised me againn that i m prolonging his suffering and he would onl be facing a new infection in next 2 weeks even if we cure this or stabilise this there is no end and i dont know what happened to me i took the decision of pulling him off and putting him on hospice care and aft medicines and support was pulled off i hd requested dad stays in ICU till he passes away as i wanted him to pass away peacefully I also requested that they sedate him which they did and was holding his hands assuring him that i would tk care of myself and my kids as he slowly passed away me holding his hand by his bedside.I feel guilty for taking tht decision i feel i gave up on him and he had never given up on me he was the only person who had not disappointed me ever in life and i failed him miserably .Its been 2 yrs 14 days he has passed away but not a moment goes by when i dont cry and my grief has not lessened by an inch I dont know what to think and i detest myself I could hv been kinder to him esp in the last days I always took care of him loveingly and he was the dearest person to me