I lost my older sister on May 30 to bacterial meningitis. She collapsed at home and was taken to the hospital on May 24. We (my parents and I) drove to the hospital (which was about 6 hours away) to see her. We stayed a few days but had to head back home (she had not shown any signs of improvement at this point). On the 28th, we received a call that she was worsening (liver failure as a result of cirrhosis and kidney failure). The neurologists assessment was "hopeless prognosis" on the 27th. The plan was to remove life support on the 28th but when we arrived we saw some movement in her which we had not seen before. The movement was described to us as posturing (decerebrate posturing) and not a good sign. Apparently posturing is simply a brainstem or spinal cord reflex which can be spurred by touching them. I decided to stay the night with her hoping it might spur some miracle recovery. I talked with her and tried to get her to move her fingers and then her thumb. Her arm did move down for me on occasion and I'm haunted by whether it was simply that reflex or if she was actually responding to me. I keep replaying it in my mind. It happened several times. I mentioned it to a nurse in the morning and to my parents when they came back in... I can't recall what the nurse said (if anything). My parents said they tried but didn't sense a response... I'm sorry this post is so long and maybe doesn't even make sense. I'm just so concerned that a critical sign of recovery was missed and it's all my fault. The odd thing is, we moved forward and removed life support on the 30th and I was at peace with the decision then and for the next few days was fine with it. Then one morning I woke up (around June 2) and started thinking about the above and now I can't shake it... Maybe it's just part of the grieving process but I have no idea. I have just started seeing a therapist to help. I do have a tendency to ruminate and have had bouts with OCD in the past.
Of course it does. You've suffered quite a tragedy. No wonder your world feels so rocked.
I'm glad that you're going for therapy, it's important for you to process this with someone
trained to help.
I can't say if your sister's arm movement was in direct relation to your asking her to move it. Did it only move when you asked her to move? The reason I'm saying this is when my dad passed, his arm (the one he could still move) kept reaching up and out like he was trying to grab something. He was totally out of it with the morphine for at least three days. My brother got very agitated the day before he passed. I was with him and he kept sitting up, lying down, moving his arms and legs. I think it is just part of the whole thing.
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If you open the door even a little bit - the devil will fling it open. Keep it closed with prayer.
It would move on its own too... Apparently with abnormal posturing the movements can be spontaneous or from stimuli (like touching). Still I get troubled by the whole event. The more I think about it, the worse I feel... I hope time will give me some peace over this.
I think it's grief, and like a feeling if only you could take that moment back, she may still be here today. When my husband passed, I went through a lot of this. 2 and 1/2 years later, once in a while, I still go through it a little. Like there must have been something I missed, or I could have done something differently or better. But as time ticks along, it does bring more and more peace. I am able to grab it pretty quickly today and tell myself that it was his time, and it had nothing to do with me. I am confidant about 95 percent of the time today that everything was done with the best of intentions, and that there was nothing I could control or change. Rest easy, and allow yourself to grieve. My heart goes out to your family.
Melissa
I saw something similar in a brain damaged person from a motor vehicle accident. It is generally an involuntary movement once the brainstem has been damaged. It is commonly seen in spinal cord damage, which would include meningitis. I am so sorry for your loss. I know it is hard but try to accept that things happen and sometimes despite our hopes and best efforts, there is really nothing that one can humaly do to stop the course of the damage.
Hi, would also like to say - you get "survivor's" guilt. As humans, when something goes wrong, we look for people to blame - even if it is ourselves. It was not up to you to get her better or recognise signs of improvement - that's what nurses and doctors are there for. You did what you were there to do, what could make a difference - you held her hand, you stayed with her and you were there for her. Hold her memory close, but let her go. All the best, my friend
