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Regret/guilt/feeling what she felt

Discussion in 'Coping After a Sudden Loss' started by Zev, Oct 7, 2018.

  1. Zev

    Zev New Member

    I'm not sure if anyone can provide something more than the typical "You tried your best" or "It will get better over time" that I've been receiving from friends and family, but I lost my mom just over a week ago, her death "sudden" despite her being in extremely poor health. The main source of the ruminating thoughts in my head is from the knowledge that my decisions pretty much sealed her fate, no matter how good my intentions were. (Sorry for the long post)

    My mom was in and out of hospitals, rehab centers and skilled nursing facilities the past six months. She managed her worsening liver condition with medication while more and more issues popped up, like an abnormal heart rate, blood clots in her leg, compression fractures in her back, and just a few weeks ago, sepsis. She developed opened wounds all over her arms, legs and back, and when I flew in from the West Coast, they immediately started talking to me about hospice. Now, don't get me wrong: I knew my mom wasn't going to be playing tennis the next weekend and living another year. But she completed the course of antibiotics for the sepsis, she no longer needed blood pressure medicine, and they took her off critical.

    The problem was she was still in so much pain and was on so much pain medicine, she was incredibly weak and having difficulty swallowing. They had to reposition her every few hours and clean her wounds. She was hanging by a thread, not eating and not getting nutrition, and her pain would pop up at random times, including when the ICU nurse -- who was assigned to just two patients -- was with her other patient. So despite multiple snafus by a home hospice company I picked, I ultimately decided to take her home to see if a new environment would help her start eating again, and she would have a nurse just for her 24 hours a day to give her pain medicine. I made that decision despite my mom shaking her head no when I asked if she wanted to go home.

    To make a long story less long, the hospice nurses were awful, my mom had more pain despite being on morphine, and she had a recurrence of sepsis less than 48 hours after coming home. I found that out after taking her to another hospital, where she suffered so much during a 13-hour stint in the ER. Her face was yellow from her liver condition worsening, and she was no longer able to talk or even react to anything anyone said. While my mom hadn't been super verbal up until that point, we communicated every day, and she would ask the nurses where I was when I wasn't in the room. Now she couldn't say anything as her body shut down. I can't stop thinking about how much she suffered in that final week. How confused and scared she must have been. Did she wonder where I was? (even though I was in the hospital 12 hours each day) Did she feel I abandoned her? Because while I agree with everyone I've spoken to that there's no way to know if she would've endured the same fate had I left her in the hospital the first time, I feel like I let her down. I feel like that's not the ending she envisioned, and she depended on me to help her avoid it. A week before I took her home, she grabbed my arm and said, "Don't let me die! Please don't let me die, I'm not ready." ... And I can't shed the regret and guilt of how my decision to bring her home had such negative consequences.

    Thanks in advance for reading and providing any insight.
     
  2. griefic

    griefic Administrator Staff Member

    Zev, thank you so much for sharing your story. I'm so sorry for the loss of your mom, and for all the pain you are feeling. I will avoid the "you tried your best" response, because clearly you have heard it before, and I recognize that it's not always enough. It's fine for other people to say it, and nice that they're trying to make you feel better, but unless you can really believe it for yourself, than it just doesn't quite matter what others say.
    Here's what I will tell you. This happens to grievers all the time. Faced with an impossible situation, people caring for a loved one have many hard decisions to make and are usually making them under very stressful circumstances without a lot of help or time to research or decide. We don't get a split screen into the future to know if we take this path how this decision will go, or if we take the other path how that decision would go. So we do the best we can with the information we had at the time. And I know that sounds similar to the advice you've already heard but it's a very VERY important question for you to ask yourself: did you do the best you could with the information you had at the time? Based on everything the doctors were telling you, based on everything you were seeing, and based on what simply felt right to you in your gut in the moment, did you make the decision that you felt was best for your mom? I already know the answer. Of course you did. The problem is, the outcome is not what you would have wanted, and now faced with this loss of your mom you can't help but go back and wonder "what if?"....
    Second guessing isn't officially listed as one of the stages of grief, but it should be. It is so common to take this time and this void that you now have and to fill it with endless regret, guilt and second guessing.
    You've heard that hindsight is 20/20 and nowhere is that more true than in grief and loss. Looking back now if feels more clear what you should have done (or perhaps at least what you should not have done) and many grievers can spend the rest of their lives going over and over these decisions in their head.
    In the end, you have to let yourself off the hook. Not right now. This ruminating is actually a very normal, and actually therapeutic part of the journey. There is so much to process with a loss, and your brain may simply be more comfortable going back and reliving details than it is in facing the emotional loss and pain that comes when we lose a mother.
    In time I hope you can let yourself off the hook. I hope you can recognize the great lesson in loss - we don't have as much control as we think. Because if we did than no one that we love would ever die. So we do our best. And I guess in the end, that is the best thing you can tell yourself. You did the best you could with the information you had at the time. There is no one in the world who wants better for us than our parents. I hope in time you can find some peace with what happened, in the way that surely your mother would want for you.
    I thank you for being here and I hope this has been a help. Please keep in touch and let us know how you're doing, we'd love to hear from you. I wish you all the best~
     
  3. Sciguy

    Sciguy Well-Known Member

    Sorry to hear about your mother. I lost my mother suddenly in May. In my case, however, she was not ill for a long period beforehand. She literally dropped dead. I found her on the floor, stiff and cold the next morning. She obviously had some undiagnosed heart condition. If I had insisted on her going to the cardiologist routinely, would she still be alive? Who knows, but I asked myself that question a million times. I also felt guilty that I did not hear her fall in the middle of the night, even though I was there in the house. Guilt almost always accompanies the loss of a loved one. I can't say anything that you haven't already heard. I just hope that you find this site helpful.
     
  4. Zev

    Zev New Member

    Thank you very much for the replies and the sentiments. I feel for everyone who has to go through something like this. I think the last part of my subject line (feeling what she felt) has been -- and could be going forward -- the toughest part for me. I'm not sure how much the bereaved think about this ... how do I put this? ... Like I had mentioned, a week before I brought my mom home, she told me not to let her die. She did that in the morning of what was a pretty surreal day: She had me bring her rabbi and as many of her friends as I could find to the hospital. Singing, prayers and laughter filled the ICU as people packed into this room. My mom was overcome with emotion, she thanked everyone for visiting, she thanked me for being there by her bedside the whole time. She apologized for any aggravation she had caused me in the past. ... She lamented her situation and wondered aloud why God was doing this to her, but if you had been there the whole day, you would have seen a certain level of catharsis, a certain level of closure.

    And while I would still be devastated, if she had passed away in her sleep that night, it seems like that would be a good way to go out. A peaceful way. ... But she didn't. And what I'm trying to say is that I think a focus of mine was to try to find a peaceful way for her to go out. Or at least not a brutal way. Let's put it this way: I really wanted her to eat and drink, because she needed the nutrition, but at the same time, the doctors and nurses scared me so much about her choking to death because of swallowing problems. I thought to myself, "That would be a horrible way to die. I need to make sure that doesn't happen to my mom."

    But in the end, she suffered so much anyway. During her couple of days in home hospice, she was in a quiet, warm, dark room. But when I took her to the ER, it was loud and it was cold and it was bright, and I could see what she was feeling and I could feel what she was feeling. As her sepsis resurfaced, her body temperature dropped, and the hospital took forever to give her a heating blanket. The cold and the pain and the confusion and the fear. I wouldn't wish those on my worst enemy in their last days, and here that's what she felt. There are images from her final days I can't even type about, it's too much. And in the weeks leading up to all of this, she was so dependent on me in the hospital. She had all these friends, but at the end of the day, it was like the roles were reversed and I was the parent and she was the child. And she needed me. She would just want me to sit there and hold her hand until she fell asleep and be there when she woke up. And it hurts my heart to think about what she was thinking and feeling during those final days.

    I know death isn't nice and neat, and maybe I sound too idealistic. But these are the thoughts going through my head, and unfortunately I don't see a reset button to change my decisions and give my mom a less painful, less confusing, more peaceful, more closure-filled passing.