I have been really struggling since last November (2012). My mother was at work one day and during a meeting she was having, she stood up and said to the people in the room.... I am really dizzy and then collapsed on the floor, went into a seizure followed by 2 mini strokes. My mother lived in another state from me and I flew out to where she was to be with her in intensive care. Long story short, she had a subarachnoid hemorrhage. My family and I had to make a decision after she had been on a breathing tube and feeding tube for 14 days. The doctor said that we needed to make a decision because she needed to perform a tracheotomy so they could put a permanent breathing tube in her. The doctor said that the best we could hope for after my mother wakes up from her coma was that she would be in a nursing home for the rest of her life in a bed with a permanent breathing and feeding tube and she would have to be moved every 2 hours so that she didn't get bed sores. That would be the extent of her life. My family and I had to make the decision to take her off of life support because she would never want to live that way. Well, it's been 9 months and I can't get her taking her last breath out of my head. I question myself every day if we made the right decision. After all a doctor is human. How does she know whether or not my mom would have been the one person who would have survived and turned out ok? The whole staff kept telling us your mother is very very sick. She was in a coma and then they had to put her in a further induced coma so they could try and get her brain to stop swelling so bad. I just need to hear from someone if it's ever possible for someone with the worst case scenario to ever function somewhat normal after this. I feel like I have murdered my mother even though the doctor said it was the best decision. I am really struggling with this and would like to hear from someone who has dealt with this type of injury before and what has happened to their loved one if they were able to make it through a severe subarachnoid hemorrhage involving strokes, coma, swelling of the brain and seizures. I really need information to help me place the lost feelings I have with knowledge. Thank you for listening and for any stories or advice you can give me.
Hi Lisa,
I'm so sorry you had to make such a difficult decision on behalf of your mother. I can't imagine the pain and sense of responsibility you must feel about what you had to do, because I haven't had to be in your shoes, but I do know firsthand a fair bit about the subject.
I suffered a ruptured aneurysm (which nobody had known about) in May 2009 at the age of 27. I had a really large sub-arachnoid haemorrhage but (mainly due to my age) I didn't lose consciousness and was still able to talk and move despite the seriousness of the situation. I spent nearly 7 weeks in hospital, and then 8 weeks resting at home... but I came out of it without any major deficits or impairments beyond muscle loss and headaches. I felt it might be helpful to share this very different outcome to your mother's story exactly because it is so very different, and so freakishly rare to have a recovery like I did.
When I was in hospital recovering, I devoured EVERY piece of information I could get my hands on because I needed to understand what was happening. I had heard about brain haemorrhages before and knew what an aneurysm was... but only in a very vague and abstract way. I felt like a victim in many ways, but ultimately, beyond the anger at the situation, I learned how very, very lucky I had been and how things usually turn out for those who suffer ruptured aneurysms. 40-50% of sufferers die from the initial bleeding, around 15% before they ever make it to an emergency room. Of those who survive the initial bleed, more than 66% suffer permanent deficits and impairment. The major predictor for what a patient's outcome will be, is their condition when they are hospitalised. Condition is usually judged by the Hunt & Hess scale, which runs 1 to 5 (5 being most severe) - from the sounds of your description, your mother would have classified as a 5 given the severity of her seizures and coma. A grade 5 indicates an approximate survival chance of 10%. That's chance of survival, not of recovery... combine a 10% survival chance and the worst initial condition with the overall stats above and you can see that it is insanely, insanely rare for someone in your mother's condition to have any form of meaningful prognosis.
SAH is sadly not an uncommon thing in world terms - they have really solid and deep data about the subject, and the medical profession does have a really good grasp on the realities involved. If the medical opinion after 14 days was that there was no realistic possibility for meaningful recovery, I think it is an opinion you can completely trust. Your mother had a very poor prognosis when she was admitted to hospital, and during that prolonged period of swelling her brain would have become extremely damaged. The hospital would have been doing everything possible to encourage the swelling to go down, to be controlling the pressure inside the head, etc, etc... but ultimately if they can't control it, the tissues of the brain will die off and there is a limit to what it can endure and recover from. If parts of the brain die it is possible to for people still to function, perhaps with impairment... but if too much of the brain dies there is a tipping point at which someone can't recover meaningfully.
I talked a lot with my mother when I was in the hospital. We have a family history that is very full of Alzheimers and her greatest fear is losing her mind all that comes with it. It is a fear I share. Even though I was recovering well in the hospital, there was still a fairly high chance that my aneurysm might re-bleed and that I might suffer deep and lasting mental/physical damage. Nobody (or at I think) would ever want to live as a half-alive burden on others. I certainly would not. And we talked a lot about that. And if she and I had ever found ourselves in the awful, painful situation you and your mother found yourselves in, we would have wanted the same outcome. You didn't kill your mother, you did the right thing for her and the only thing that makes any sense in the situation. Past a certain level of damage there isn't any real hope for recovery and although I did not know her, I bet your mother would not have wanted to be half-alive.
Nobody has been in your shoes, obviously - but what you feel sounds normal to me. You had to take a responsibility on which nobody ever expects to have to do. It isn't normal or expected to have that power of life over someone else. But you have to know that it wouldn't have been life in the sense that we understand it. What killed your mother was a massive brain haemorrhage, that's what took her from the person she was - it wasn't you that did that and you shouldn't let yourself take the blame for something you were forced to do by circumstance.
I know the stuff I write might seem blunt/cold/factual in places - but I think it's crucial to see the reality of what SAH is all about. It's an awful thing and most people don't come out of it alive, let alone well. You certainly didn't fail your mother. I hope you find a way to feel better and begin to realise that you did the right thing, and really the only thing you could.
Bruce.
Hi Lisa,
I am sorry for your loss. My story is a lot different from your moms however here it is... I am so glad I did not have a dnr or living directive when my annie burst. If I did I am pretty sure I would not be here. I would not want to live on a machine and that would have been in there. I would not want to be severely brain damaged and that would be in there. When I first arrived at the hospital and when they discussed how bad I was they told my husband that I would be 40% - 60% brain damaged. I had that much blood in my brain. As time went by from surgery to me being fully coherent that % greatly got reduced. They estimate I might only have 10%. Even though they only estimate it at 10% I suffer from constant migraines, depression, lack of energy, can't concentrate, any complex thinking will leave me with a migraine so bad I will be in bed for a day or 2. I feel like a burden to my family now. I was the caregiver. I took care of everyone and everything. The only thing my husband had to do was wake up go to work and come home. I did everything else. I can no longer do that which has left me feeling useless. Lately I find myself feeling on a regular basis that I am not living I am just existing.
Lets go back to the story of your mom. Sounds like she had several strokes, seizures, had to be put into an induced coma, and had severe brain swelling. After reading Bruces post she had very little (I would say less than 1%) of ever coming out of a coma let alone leaving a meaningful life. I think you did the right thing by letting her go and be at peace rather than living on machines. I hope this helps you deal with the decision. My thoughts will be with you...
VJ
I believe if your mother was to survive she would have survived...this to me is beyond what a Doctor says and knows, but what one's faith will tell us...hold on to the fact, that the life etched out for mom was no life and she is at rest and no longer in pain...Hold very tight to your good memories and know that your mom loves you and it was just her time...~ sending an extra thought and prayer your way ~ Colleen
Wow! Thank you so much for all of this information it is very very helpful. First off, let me say that I am so sorry that you have had to go through this yourself but I am so greatful that you pulled through it and are alive. I can't even imagine what you have had to go through but I am just really amazed that you were able to get through it and still function normal. I think you are right, it has alot to do with your age. My mom was 62, smoked and high blood pressure amongst other surgeries she has had to endure in the last 5 years. It has been a long road for her but I know she never in a million years expected this to happen. You are right...she was a 4 on the hunt and hess scale when it was time to make the decision. I saw for myself the physical exam they gave her to see where she was neurologically. There was no reflexes at all when they did the test on her. I made sure I was there to see it for myself. I really appreciate all of this information because it is extremely helpful to me. I also thank you for sharing your story and the talk that you and your mom had. Funny, my mom told me when I was younger that if she ever was in a car wreck and was on life support for it.... she said to pull the plug. That is all I had to go on when I made the decision. I still in the back of my mind was wondering the whole time... what if she is the odd ball that gets through this and functions ok.... the doctor is human what does she know? That was the biggest thing I was fighting with. The other thing that stands out in my mind is that she was in a meeting at the time it happened with a bunch of doctors! She was airlifted from the military base to a top hospital for this type of health issue. She made it to the hospital on a helicopter. My mom was a fighter. Always has been. Never took any mess and always said it like it was. For her to make it that far (and as you said... most people never make it to an emergency room alive) I had to wonder to myself, is this a sign. If she was fighting to make it to this hospital maybe this is her telling me she doesn't want the plug pulled. I struggle with that thought in my head every day. They did finally get her brain swelling to go down but it took them putting her in an induced coma on top of an already existing coma to get her brain to stop swelling. I was sitting with my mom for many hours obviously and I believe that people can hear you when they are in a coma. I said to her, "mom, if you can hear me... I need you to send me a sign if you want me to let you go because I can't do this by myself." The next day the doctor came into the room and said.... "your mom is doing something very strange." I said, "what?" the doctor said, "she is holding her breath and there is no logical explanation for it." She told me that she had been fighting her breathing tube and they finally got her stabilized with it and then she started holding her breath and there was no medical explanation for it. I took that as my sign. Man was that a tough decision to make. It haunts me every day.
I don't think you sound cold at all. I love people that tell it like it is because how else are you gonna know what your dealing with? I really really appreciate you telling me everything. You sound like my mom.... a fighter. :) I am so glad that you are here today and I have a feeling you are going to be just fine. The fact that you have the insight like you do and keep up with the information like you do says alot. You hang in there and I will say a prayer for you. I think you are an inspiration. Thank you again for sharing with me it means alot.
Lisa
Thank you so much VJ and yes that does help me. I am so sorry to hear that you have suffered like you have. It sounds like you went through something similar to my mom and I am really glad to hear this information because it sounds like you are managably functioning.... may not be at the capacity that you were before but it sounds like you are able to manage am I right? I feel so bad that you are having migraines, depression, lack of energy because I know that has to be so frustrating for you especially when you never had that problem before. I know that your husband is so thankful that you are alive. See and it bothers me that they told you that you only had a 10% chance and look at you now.... you are functioning. See if I knew my mom could have had a slight chance of functioning I would not have pulled the plug. It even looks like .... just reading from your email that you are able to still write good and comprehend things. Please don't feel like a burden to your family. That breaks my heart to hear that because believe me they are so thankful that you are alive. If I was your family I would be blessed that you were still here. When you are married it's for better or worse and now you are having to deal with the worst and I know your husband loves you and is thankful you didn't go on. I had just gotten engaged the month before my mom passed. We lived in two separate states so we had planned a month in advance me and my fiance going to stay with her over thanksgiving. 5 days before thanksgiving...I got the call from my brother that she had been airlifted to the hospital. I got there and it didn't look good. My mom never got to see my ring, she never got to hug my fiance and she never got to help me plan a wedding. It has taken me 41 years for this moment and now I won't be able to have my mom help me and be by my side. So believe me when I say your family is very thankful to have you. Even if my mom wasn't as active as she was before but could function....just having her in a room with me while picking out my wedding dress would make me happy. Thank you so much for sharing your story with me. I really appreciate it and I am so sorry that you are having to suffer. My heart aches for you. It truly does. Don't give up hope, you are alive for a reason. Believe that! I will say a prayer for you. Thank you again for sharing with me.
Lisa
Thank you so much Colleen, I really appreciate those comforting words and I do try my best to hold on to the good memories but sometimes it makes me sad to see a smiling memory and then reality hits again. I know with time, things will get better. I just miss her so much. Thank you again for your thoughts and prayers. I really appreciate it.
Lisa
Hi Lisa,
You are so very welcome. Your post touched me a lot and I just hope anything I said is able to be of any comfort or help to you. I think in so many ways the trauma of something like SAH is worse for the family and friends than for the person. When I was in the hospital I had a bad patch for a few weeks due to vasospasm and fears over possible swelling and was in the ICU for roughly two weeks. Everyone I knew was completely terrified... but I was miles away in a strange hallucination where I thought we were in a spaceship and off to colonise a new planet - it sounds insane, but it is comforting to me in hindsight (and maybe to you I hope!) because although technically I was very near to death, my mind made a strangely comforting cocoon for me to live in. I was not afraid at all - I like to think this is what the mind does for us as a protection when it is close to shutting down. I guess maybe your mother would have been in a reality involving less spaceships (I've watched a lot of bad sci-fi in my time) - but I feel sure her mind made her a nice place to go that was not frightening.
I think you are right about people in a coma being able to hear - it sounds very much like your mother was sending you a message, and it sounds very much like she would not have wanted to live her life on a machine with extensive damage. I suppose there will always be a part of you that carries guilt, but I hope you are able to come to feel that you did the right thing and the thing that was in line with her wishes and what was best for her.
Thanks for your kind words and thoughts about my own situation - I have been beyond fortunate with my recovery - I still have some headaches and get vertigo occasionally, but other than that I'm just the same as before now. It feels a little like a bad dream sometimes... like maybe it didn't happen at all. It has taken a good few years to feel mentally positive again... but I'm feeling like the future is bright now.
Thanks again for your kindness, and please be kind to yourself too! :)
Bruce
Ah God Bless Lisa...wishing you a good day...cyber~hugs Colleen