Hi

Hi I am new on here, feeling a little lost to be honest. Following another sleepless night, trawling the internet for answers to questions I don't have I came across this page. Not sure what I am doing here or what I want it just felt right - it's now day 21 since my husband suffered a major brain injury which has turned our lives upside down. He is in a coma in the John Radcliffe hospital and our future suddenly is very unclear - I am functioning for the sake of our daughter who is 11.

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  • Hi and welcome. I know just how you feel - it is many year's since my husbands major brain injury but I remember it like yesterday.

    Please give Headway a ring, they can answer all your questions and give you all the information you need. For support, please keep in touch on here, we all know how it is for you.

    It is still very early days for your husband. The brain is a wonderful organ but after a catastrophic injury it takes a long time for it to recover. Just keep talking to him when you visit, let him know you are there. If you read some of the posts on here, you will find amazing stories of recoveries from horrendous injuries, the one thing everyone will tell you is that it takes a lot of time before you can tell the outcome.

    Life will be difficult for you, and for your daughter, but hopefully before too long, your husband should be showing signs of improvement, slow at first but getting there.

    Lots and lots of good wishes to you.

    Jan

  • Thank you so much Jan today I am going to ring headway - my family have persuaded me that a day off from the hospital to spend with my daughter is essential - today the door is locked as I am feeling suffocated by good will which sounds dreadful, I have closed my social media page as it seemed wrong x

  • You have to do what feels right for you, it doesn't matter what other people think. The most important things at the moment are that you give your daughter the time needed to help her through this and to keep up your strength. Make sure you eat properly and sleep if you can. It is going to be a long and difficult journey and you need to be prepared for it in the best way you can.

    Take what you need from others, let them help out with shopping, cooking etc but remember this is your journey, just keep strong. Many people on here who have been in your husband's position will tell you how it was for them, how it helped to have family talking to them., etc. I know that for YOU, the important thing is to keep up your strength, give your daughter the help she needs, and be prepared for this to be a long journey. Don't forget to ask for help if you need it, but don't let people 'suffocate you by good will'. Just ask them to give you space and time alone with your daughter when you need it. Only you can know what you need.

    You could just use your social media page (or get a family member to do it for you) to update friends on your husband's condition - it is much easier to do that than to have to have everyone phoning or asking you all the time how things are.

    Any help we can give, just let us know - the people on this forum are wonderful and extremely caring.

    Jan

  • Thanks Jan this is lovely and I will certainly remove my head from the sand and ring headway today.

    My main struggle is not knowing and an overwhelming terror that he won't know our daughter x

    I keep being told early days still but but the Neuro surgeons words on the first day are all I can hear coupled with the need to do the right thing by my husband. I know this is not a life he wants, sorry if that sounds awful but I know for a fact he would not want this but it seems so out of my control - they keep operating despite telling me he has had a major catastrophic life changing brain injury.

    I now have a DNR in place - I am not sure what I should be saying to a little girl whose daddy went out one evening and has not come home, she has been to see him once when he was on the normal ventilator. However she doesn't want to go back and now his eyes are open and he is simply staring with no recognition I think she would be terrified.

    X

  • Hi Lormck, I`m a new member to this site. I noticed your post was written 7 months ago. Five weeks ago my 51 year old son had a motorbike accident, he is still in a coma. Your post is exactly what our family are going through, and I wondered what your outcome if any has been. My son opens his eyes, but just stares. He can`t communicate with us and I`m not sure that he is aware of us. He moves his arms and legs repetitively. My family and friends have been a great support, but I wanted to ask somebody who has gone through this same nightmare as myself.

    Best wishes and hugs to you. Carole x

  • Please check the headway post "best wishes for Christmas and new year"

    The helpline is closed until the 3rd of January at 9am.

    We here will help in any way we can and I see you've already met a kindred spirit in exhaustedwife .

    Welcome.

    Love n hugs

    Xoxo

  • Thank you that's so kind x not sure what I'd say to them anyway x

  • Please don't give up. Miracles do happen.

    You can look at people's profiles and I am thinking of miracleman in particular.

    No one can tell you for certain what is likely to happen.

    While your husband is in this condition you could record some not his favourite very quiet music and positive messages for him like something good from your daughter's day.

    It is vitally important that you look after you and get as much rest as you can.

    As for telling your daughter I would probably nstart by asking why she doesn't want to see dad again. Children often understand a lot more than we credit them with.

    My explanation would be something like

    Although you can see your dad he is really very lost somewhere deep inside and we don't know if he will be able to find a way back to us.

    Not sure if this is any help but as I said please don't give up.

    Love n hugs

    Xoxo

  • Massive help thank you all so much xxxx just a bad day for me today x

  • You and your family are in my thoughts.

  • I'm so sorry for all you're going through right now Lormck. It's shocking how our lives are turned upside down in an instant by brain injury and it's a long & very different road we travel from then on. But with brain injury the outcome can be surprising and often better than anyone, even the doctors, can foresee.

    On the rehab ward, after a brain haemorrhage, I was surprised to find my son videoing me on his phone as I walked (with difficulty at that time) back from the bathroom to the ward. He told me it was something he never expected to see again after the poor prognosis the doctors had given weeks earlier.

    Keep reassuring your man, by touch and talking, to guide him back into consciousness. My uncle talked to my cousin & played her favourite music for months during her coma after a RTA ; she told afterwards of how comforting his presence had been.

    And as others have said, keep on making time for you and your daughter. I know you'll both be in a strange and awful place right now.

    Sincere best wishes for better days ahead, and please keep us informed of your man's progress ..................and how you're coping. Love Cat xx

  • Thanks car your words have really helped me xx

  • Hi also know what you are going through and my 13 old daughter had to be told about her grandad (my dad) and also did 1 visit but that visit she did my dad waz still in his 2 week coma from a very server brain injury and his eyes waz closed. But now my dad is awakening me and my family decided not to take my daughter to visit as we felt would be to upsetting for her considering her grandad is totally not her granddad she knows and luvs at this stage and also my dad looks very confused so we decided to leave for another 3 weeks or so to re access then. Everyone will have different apinions on this im sure but i do belive each situation and child is different and it will be the parents and family decision with the well being of both patient and children to be considered

    All my thoughts to you and yours family and i will pray for improvement for sure

  • My thoughts are with you as well x xxx

  • Hi :) welcome to the forum. There are several partners and spouses if tbi sufferers here who will fully understand you're position. Drop by anytime - there's always soneone here :) x

  • Hiya oh sweetie it's so terrible for the families of people affected by brain injuries but there's lots of support from others on here and searching the internet all night isn't any good the Drs are there for that sort of thing the best you can do right now is get some sleeping tablets from the gp if you need them and get as much rest as possible like you say to function for your daughter you'll be no good for yourself or your family if your tired or get ill my darling xxxx

  • Thanks Hun you I am so humbled by all the lovely messages, people are so kind x

  • Hi hope you are keeping your head above water. It is such a hard time to get through. Everyday brings some Dr talking at you about the worst scenarios I remember feeling like they were physically squeezing my heart. So I stopped listening and in my head just said what will be will be. Believe it or not this helped me. Like you I stretched myself out like a piece of elastic but you have to accept you have no control - very difficult for us women. You have to put it all in the hands of the hospital and hope for the best outcome for your husband. Lots of love to you all xx

  • Hi,

    I hope your husband is getting better, slowly but surely. My dad had his first unruptured anyeurysm when I was 11 and a bleed 18 months later. My childhood was changed overnight and I lost the dad I knew and loved but have gained a man who has been left with disabilities but who I respect so much for all he has been through. Looking back at how my mum coped and tried her best to ensure me and my (16 year old at the time) sister had as little disruption to our lives causes a lot of distress but as a family we have overcome it and although he has never fully recovered and has long term affects and the impact it has had on all areas of our lives was massive, he is happy and that was 26 years ago. Treatments have come along so much and rehab too which was severely lacking when my Dad first became unwell. I wish you and your family all the best and despite me now being 37 I remember being that 11 year old girl going to see my dad in hospital and being so scared but my mum was brilliant despite her own heartache and explained everything to me as much as she could to reduce my fears. I hope talking from 'that 11 year old girl' point of view helps you and your daughter and although every head injury is different there is light at the end of the tunnel, with maybe a few adjustments along the way.

  • Thank you so much for this message it was so very kind of you, it's four weeks Friday since his accident and he is semi conscious but no response to commands or much movement of limbs x my daughter seems to be accepting it but lord knows how x in typical 11 year old fashion she has just announced that she's turning vegetarian - bless her x

  • Ha, you will spend your time fretting and worrying and she will be worried about eating meat :-) children adapt, better than adults I find through my personal and professional experiences. They accept change and I don't remember that time of my life being traumatic (other than the first sight of my dad as I wasn't expecting what I saw but that is no fault of anyone's). You will get through this and cope the best you can and that is all that can be expected of you. Try not to worry too much about how your daughter is coping, there will be hurdles but they can definitely be overcome. My mum made photo albums up for my dad to trigger his memories and although she kept me involved she sheltered me from a lot, which I realise now. It's a fine balance and only you and your family will know how to manage it but please look after yourself too and it's ok to ask for help.

  • Thank you so much you will never know how much your words lifted me tonight xx

  • Just seen your post - we are one year on from our dads traumatic brain injury at the time my brother was 10 & devoted to him. That was always the hardest part for all of us - do we take him don't we but ultimately we decided not to as neither of them would of benifitted from the visit- dad semi conscious and him unable to talk and play with him like he would expect.

    We're 1 year on from being told he has 3 areas of catastrophic brain damage your best hope is a vegetative state or a severely disabled man - it was rammed down our throats every day - "your dad is gone" he has minimal brain activity

    He's now working 10 hours a week at his old job , living independently with some help from us and is walking talking and arguing with us as good as he did before 🙈

    I've made a point of taking dad back to intensive care twice now to show them they were wrong and that although they can't give false hope they also shouldn't be giving out definate negatives

    It's an exhausting time - bombaded with messages and offers , every scenario whizzing round your head - the future a big black hole , I hope in a years time your in my position ... offering a glimmer of hope in what at the time seems like a hopeless situation x

  • I just keep reading and rereading this x seems a lifetime away 😭

  • It seems like a lifetime ago we were there - I'm sure it can't only be a year but you are stronger than you think and time passes , keep a diary jot down what's happened each day , have at least 1 day a week where you do something with your daughter ....it's a horrible time and I genuinely never believed we would be where we are today - many times I wished he would just pass cause I couldn't bare the thought of the future the drs predicted.

    Do contact head way they have been invaluable to us on the road to recovery

    Sending lots of strength and positivity x

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