Newbie

Hi all, I'm new here. I am currently in the midst of a difficult situation. A family member has suffered a traumatic brain injury from which the doctors are saying there is no hope of any meaningful recovery. She is just existing on a life support at the minute but they are clear that the state she is in as good as she will get. I am devastated. Made worse by feeling very alone and I'm wondering if there is anyone who has experience of this situation and would be able to talk to me about it.

Thanks in advance

Kitty

7 Replies

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  • Many people here have had the same experience and I am sure they will be replying to you shortly. Importantly, don't EVER give up hope. There are lots of people here who will tell you they had the same prognosis and yet they are now living useful lives - although not the same lives they had before. Keep a diary where you write down everything that you are told, every little improvement in her day to day life. Talk to her, play music, whatever you think she would like. Most of all make sure you all get plenty of rest, it will be a long, long journey to whatever recovery she makes and you need to be prepared for some very testing times.

    Speaking from my experience, I was told my husband wouldn't recover enough to ever come home, I should put him in a home and leave him there. That was nearly 30 years ago. He recovered enough to work and, although he is different from the person he was once, no-one meeting him for the first time would know that there was anything wrong with him.

    Do keep posting on here, there is so much support. Ask anything you like, someone will probably have the answer.

    and look after yourself...

  • Hi Kitty,

    Can I reinforce what Jan has said, never, ever give up hope.

    My husband was told that if I were to survive I would be in a permanent vegetative state and asked him to put DNR on my notes,

    Luckily it didn't come to that, I came out of the coma and off life support, my family had many words with the hospital staff when I was beginning to wake, the hospital staff insisting it was just wishful thinking on the family's part when in fact I was starting to respond, not by blinking my eyes, or squeezing hands as the most common way but by sticking my tongue out in response to questions.

    It has been 5 years now, and I am doing fine thank you, it has taken a lot of work on my part, I had to learn to walk and care for myself again, I was dyslexic when first trying to read and I have problems with fine motor skills, but my memory is much better now and I have quite a degree of independence, going to London and Glasgow by train on my own.

    Unfortunately I had to give up work, I have physical problems and fatigue problems that preclude work and I no longer feel my reactions are good enough for driving. But, life is good, hopefully the doctors will be proved wrong, they always give a gloomy outcomes for brain injury because recovery is so unpredictable.

    Keep talking to stimulate your friends brain, surrounding her with friends and family, and don't forget to keep reassuring her, believe me it is true that the patient can hear when in a coma, but not everything as you drift up and down through different concious states, I can remember snatches.

    So again, don't ever give up.

    Best wishes

    Janet x

  • My daughter had a car accident on the 2nd of January 17 she has a severe diffuse axonal injury and bleed on her brain stem she was on life support and then a tracheotomy we was told in icu that she may not make it a month later we was in rehab we're she had spacticity in her legs and one arm she has had Botox put in twice to relieve it,she was been peg fed she is now sitting on her own standing with help and learning to walk, eating everything in site and talking although she has cognitive issues and memory problems gets confused she has come such a long way and I'm told it's still early days, her consultant told me today she is doing amazing nobody expected her to get anywhere near how she is now, I know how hard it is to stay positive in the early days but were there is life there is hope, it is still hard now because nobody can give you any answers as to how good there going to get, just hang on in there the doctors don't even know ,it is just time for the brain to sort itself out xx

  • Hi Kitty,

    I'm new on here too. We're nearly 10 weeks in from a fall my Dad had down stairs and subsequent bleed on the brain with potential brain damage. He was in ICU for 6 (long) weeks and it was 50/50 whether he would survive the first week. He is now in a high dependency ward but no longer needing high observation. He has just started speaking (some of which we can't hear) and has been answering crossword questions in the past few days (amazing!!) It's been a rollercoaster 2 months but hang in there. I'm sure all our visits and talking to him, playing music etc has helped. I think they always give a bleak picture and it is very hard to tell at this early stage. Take care x

  • kitty dont give up hope. sit with her, take music you both like a photo albumn and talk about the things you did in the past and..............the the things youre going to do in the future.

    be the person you need to be, strong and help your your family member get through this first hurdle.

    good luck

    steve x oh i have an abi

  • Don't give up hope. I think that one of the things I have come to understand since my husband had a Tbi last May is that the brain is so complicated and everyone's is different in recovery even doctors said to me it's hard to say how someone is going to recover. I was told my husband wouldn't walk and would not be able to communicate this was nearly a year ago however is can walk and talk. He has other problems that he won't recover from but I've learned that you need patience and keep hopeful

  • Hi Kitty

    I can only reiterate what everyone has said about not giving up.

    I don't know the specifics of your family member's injuries but this is what happened to me. I really hope it helps but I do apologise if it doesn't.

    My bike accident was back in September and the verdict at the time wasn't good at all. My wife tells me that that she was, initially, given allsorts of bad news which ranged from not making it at all, to being permanently paralysed.

    Here I am 8 months later laying in my own bed with a cup of tea listening to the kids get ready for school. Once the coast is clear I shall get up and get myself showered and dressed.

    There's been a lot of hard work and tears up to this point with much more to come and I know I wont be back to work this year but I will eventually.

    Look after yourself as your family member will need you like never before.

    If you need someone to talk to feel free to send us a message.

    All the best

    Neil

    x

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