New member- don't know what's going on right now!

Hi everyone, I'm new here and very new to the subject of "brain injury"

My fiancée fell down the stairs at home 2 weeks ago today. He suffered a bleed on his brain and had surgery to remove the clot. He has "multiple contusions" and a base of skull fracture and his brain is still swollen apparently. He was in a coma for 9 days and has been awake now for 4 days. He's conscious most of the time (he is finding it very difficult to sleep in hospital) so is very tired! He is very confused and delirious, from what I gather he has frontal lobe and temperal lobe injuries. At the moment his speech is pretty perfect, he is articulating very well but is rambling on like someone with dementia. He looks so confused and is suffering with horrendous mood swings and is being very verbally aggressive and nasty and is generally completely confused all of the time. I know it's still very early days and the progress he has made since he's been awake is already amazing but I just don't know what we can expect in the near future. The consultants haven't really informed us of any sort of insight into recovery time or what happens next or how damaged he is. I'm really struggling seeing him like this, he is normally a 32 year old, fit and healthy, very strong willed person and it's like being with a stranger right now. Does anyone have any experience with this sort of injury that could give me some advice or share some knowledge? Thanks in advance!

25 Replies

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  • Hi Elizabeth

    You are in the right place for informal support.

    Please ring Headway they have much more information than any one of us can offer.

    I'm not surprised the medics won't give you an idea because everyone is different.

    Two things strike me and one is that you say your fiance is a strong willed person. This is good and he can use that to help his recovery.

    You need to take care of you and make sure you get plenty of rest because you are both at the very beginning of a long journey.

    Come back anytime with questions a rant or news we are here to help however we can.

    Love n hugs

    Xoxo

  • Hi there,

    I'll just reiterate what Janet said. Janet is wise, oh yes.

    Stick around and join in whenever you feel the need, we're all here to give words of help and advice. I'm a twenty year veteran of brain injury myself and stumble on here every day to see if there's anything I can do to help. Don't hesitate to ask for help.

    Baron/Andy

  • when you think about we re in a better position to give advice because we re there / been there

  • Hi Ellz,

    If you look around the site at posts already on here you will see that what your fiancé is going through is pretty standard. I personally did not have a trauma to the brain that was localised. My brain injury was caused by viral encephalitis which resulted in my whole brain swelling and the damage could not be predicted at all. The family had to wait and see what problems I would be left with once I woke, if in fact I did "wake".

    Anyhow, it's a long story and I am at 4 years now, unfortunately my BI has meant I have been unable to work since and have mainly been left with balance issues, sight problems and fine motor skills issues.

    The reason I tell you this is because they will be unable to tell you long term outcomes at this point. Brain injury recovery is along process and depends on the type of injury and the individual involved.

    Time in this instance is crucial as is patience. You will have to be strong for both of you, and watch and wait. Your fiancé will be extremely confused, his brain will be trying to make sense of what has happened.

    I remember my husband constantly telling me I was fine and being cared for in hospital, whilst I was in the coma but it didn't stop the confusion as I awoke, I couldn't understand why I was in bed and couldn't move or drink or eat , it took a while for me to make sense of it.

    So he will need lots of reassurance and understanding, he will probably not be in control of his anger so don't take anything he does or says to heart. In some ways his brain will be like a child's relearning skills that have been lost and for the most part a lot of these skills can be re-learned but it will take that time and patience. Remember how a child learns, lots of repitition to lay down those pathways in the brain, and it takes some time to control emotions too, think of the tantrums that are acceptable in children, not so in adults!

    So here you have found a good place, come back as often as you need, vent your frustrations and seek any reassurance you need, someone will be around to support. And remember the helpline you can expect a warm welcome there too. Headway has lots of leaflets to explain all aspects of brain injury and a nurse you can speak to on specifics.

    Don't forget the team looking after your fiancé in hospital, ask lots of questions and ask them to repeat if you're unsure or don't understand. My family were brilliant and spoke up for me when I couldn't we got probably the best outcome we could.

    So take care of yourself too and keep us informed

    Love Janet x

  • Welcome Ellz, even if it's a forum that you had never envisaged visiting. Rest assured you can receive great support here and from Headway both locally and through their helpline that I suggest you call this week. They can talk you through what is going on with your fiancé in more detail as they are qualified medical professionals with an expertise in brain injury.

    I'm a carer for my daughter who is making wonderful progress following a car accident and severe traumatic brain injury last spring. She too was in a coma for a few days and woke up completely "scrambled", a very descriptive word used by one of the ITU nurses. Your fiancé is in the throes of post traumatic amnesia. This can take the form of confusion, inability to know what year it is, inability to remember something that was said or done five minutes previously, becoming fretful, anxious or aggressive. It's an anything can happen, unpredictable phase. My daughter wasn't exactly aggressive but she did use rather colourful language throughout her stay in the trauma ward. Even when she could barely talk her swearing was impeccable.

    As for the consultants being unable to give you an indication of recovery, take heart that everyone recovers in their own way at their own rate. Consultants can only give you a guesstimate. It is a highly educated guess but none the less a guess. For instance we were told my daughter might be able to return to work a full year after her accident. She's beat that prediction by about five months. Although she is not back full time, working at full capacity, she is getting there gradually.

    Anyway, don't want to ramble on further as Headway are better placed to advise. I just wanted to encourage you to accept what's happened and move forward hour by hour, day by day. Also, get plenty of rest, eat well and generally look after yourself. It's a lot harder to cope when you are running on empty. I hope there are family members that can take some pressure off you too.

    Kindest regards,

    Lazuli

  • lazuli i totally disagree with your last comments........you are in a better position to give advice, because youve been there.

    i did smile when you mentioned your daughters bad language!!!!

    i found it amusing because my bi left me constantly swearing ( you dont say whether she still swears ) the only time i dont swear is when im writing, because i have to think what im doing

    steve

  • I know exactly what you're going through. I was in your shoes just over 3 years ago. My then fiancé, now husband, suffered a brain haemorrhage on his right temporal lobe and had emergency surgery to stop the bleed and remove a clot.

    At the time I remember feeling shocked, terrified, overwhelmed but also unbelievably strong - like I'd tapped into an inner resilience I never knew I had. I'm sure you can connect to that.

    The first thing I'd say to you is hang in there. You are having to be so strong, attentive, positive and sharp to take in everything that's going on and what the medical staff are saying/ doing. This part of the trauma is so frightening because of the uncertainty. Every day will bring its own rollercoaster of progress, setbacks, concern and relief. Just ride it out. The truth is, you can't have the answers or the promise of how it will go or how he will be at this early stage. Frustrating as that is it is a day-by-day wait and see journey you are on just now. The doctors aren't likely to give you any assurances so soon. But remain positive. It will drive you forward at this difficult time. It helped me; when Alan (husband) was in ICU I started to keep a diary. Every day he would do something small, that would often go unnoticed by his medical team, but to me was a glimmer of his old self pushing through. I wrote it down so I could remind myself he was getting better. I knew him like no one else. Only I could sense those subtle breakthroughs and it kept me going.

    The fact your fiancé is talking well is extremely encouraging. The aggression, delirium and confusion is all normal stuff immediately after brain injury. Alan was very aggressive, rude to me in particular, and unrecognisable when he woke up. He even punched a nurse and put her in A&E *awful* This is not who he is; he's such a gentle loving person. I was so fearful he would be different. But then, glimmers of 'him' would shine through and I soon realised that these symptoms were acute side effects of the bleed. Over time, these subsided and he became more like his old self.

    You must be feeling all over the place right now, my lovely. Fear, joy and adrenalin become part of the emotional norm at this time but just go steady, take every hour at a time. Keep yourself fed and watered and get plenty of sleep; you need to stay as well as you can to cope with the physical, mental and emotional demands of all this. And, as hard as it is, don't think about what the future will bring - just yet. It's impossible to know and right now your energies are better placed dealing with the daily rollercoaster you and your fiancé are on.

    I see you're engaged. That was also Alan and I. I remember all our friends and family saying 'he's got to get better, he's got a wedding to go to'. At the time, I just couldn't face the 'W' word. My whole world had been turned upside-down and the wedding seemed like the most insignificant thing. We were eight months away from the big day but I just erased it out of my mind - what would be would be - and turned all of my energy into supporting Alan's recovery.

    Our ending is a happy one. Alan left ICU, went onto HDU and eventually was strong enough to be discharged into a neuro-rehab facility where he spent six weeks. After further community support he eventually phased back into work... and we got married! :-)

    Truthfully, he is different in some ways. The nuts and bolts of him are still there, he is Alan, but there are side effects that we have both had to learn about and overcome and are still mastering today. It isn't easy. But we are getting there.

    Life seems very unfair sometimes. We could never in our wildest dreams imagine such a trauma happening in our lives. But, you will get through it. Lean on those around you just now. Suck in the support. Be brave but allow yourself to crumble on the days when it feels too much - others will catch you. Laugh. Sick as it sounds some of my fondest memories of Al's time in ICU was in the waiting room with family and friends laughing at funny stories about him. Kept me sane. Reminded me of how much I love him.

    I wish I was there to hug you and hold your hand through all this. It's a lonely place being the partner of the trauma patient but let as many people in as you can to stay afloat. And you will float. You're stronger than you know.

    Take care. Stay strong. Stay present.

    Here to talk if you ever need to.

    With love and supportive thoughts,

    Jo

    .x.

  • Sounds like you're both doing very well with it. I was in a similar condition to your fiancee but am now 'seemingly normal', keep a relationship together and a baby came along which I manage no worse than the average bloke ;-). It's likely his ability to deal with basic life logistics will be very compromised for a good while, and as his hardware and software adjust to new neural pathways this will leave him fatigued for sure. The book 'Touching Distance' by James Cracknell/Beverley Turner might give some good insight, though of course outcomes are very varied...

    Very best wishes

  • excellent suggestion bards, my wife read it when i had my bi

  • Morning

    Just a quick , practical note from me for now (others have covered most other aspects I would say)... you mention him not getting much sleep in hospital....I got good earplugs and an eye mask early on in hospital....and got my kids to write a big sign that I put on bed when I was using them so staff knew.... just a thought.... also some calming music through headphones helped sometimes .

    Kx

  • i told them to shut up, all i could hear was yakyakyak

  • That wouldn't ve helped at all in my case... neuro ward where everyone was in same situation ie - emotional and filters missing ... and staff had their jobs to do as well as machinery bleeping and whirring all the time ... was glad I had earplugs /eyemask

  • moo196 only lost my filters gradually over a period of time, i do embarass her quite often i only know because she tells me off.

    my neighbour the next morning was telling his son , it was the best sleep for ages, i whipped back the curtains and said thats only because your deaf as a post !!!

    food was good though.

  • Thank you all so so much, it's so nice to speak to people who actually understand what I am going through right now! People keep saying "is there anything we can do?" And I'm like "yeah take me back to the 7th of February and make Mark sleep on the sofa and not go upstairs!!" I guess it could have happened at any time though. Thank you for all your replies, I really appreciate your comforting words and advice. I will try and reply to you all individually when I get some more time but please know that I am so grateful to all of you for taking the time to reply to me.

    Love Ellie xxx

  • No worries, my lovely. Don't feel pressure to reply; we're here to support you at this difficult time. Last thing you need is to feel obliged to get back to us all with so much on your shoulders just now.

    Hang in there, chicky. And take care of you.

    Jo

    .x.

  • Hi Elizabeth, my OH had the same injuries, in a coma a few weeks then woke up very confused (that is the post traumatic stage) and couldnt think straight. He actually said 'my hard drive is broke' (he used to be in computers) That went on for about four months. He slept a lot and we encouraged him too and sometimes spoke a lot of rubbish!. But it is an excellent sign that his speech is so good at this stage, as my OH was very slurred although it came back , he still has bad days! I think the early signs look really good for him. Think of it as a mending period where the brain is trying to sort

    out the right pathways. It is a horrible time but you will see improvements and you will

    feel so tired and mentally drained yourself. x

  • Hi There

    Oh my goodness that was like reading what happened to my husband just over 8 years ago on 6th February.

    He fell downstairs backwards in the house and had same injuries as your Fiancee.

    My husband also very strong willed.

    It is very early days for you both. My husband was in hospital for just over 6 weeks then got discharged. It sounds as though he has the same cognitive problems as my husband too!

    The consultants wont predict the outcome of his recovery as everyone with a TBI recovers differently.

    If your Fiancee continues to have moods swings/irritability ask for a meeting with his consultant and get him to refer him to neurophysicologist. I had to fight for this but I didn't give up and got a referal.

    Headway are also very good and can send you leaflets on Brain Injury.

    I know what a shock it is to see your partner like this it is like being with a total stranger. Very hard to cope with but hey 8 years down the line although tough years we are still together.

    Keep in touch with how your Fiancee is doing.

    Take care x

  • Hi Ellz. 2 weeks is no time at all in recovery terms for brain injury. I had a bleed on the brain and my family said I was so confused and angry during the first 4-5 weeks that they feared I was lost to them forever.

    Within 2 months I was walking again (albeit like Bambi) and making complete sense. My point is that it's far, far too early to make assessments or predictions right now. My recovery was judged remarkable by the doctors as, apparently, it can be a matter of many months for damaged brains to sort themselves out !

    Remember that your man is probably totally unaware of his behaviour right now ; his poorly brain is struggling to make sense the confusion within. I can't remember anything at all from the first month in ICU and I was devastated to learn later how I'd been aggressively tearing out my tubes and swearing like a trooper !

    Give it much more time my dear ; I'm afraid there aren't any short cuts in this situation...................just time. Take it slowly and look after yourself in the meantime. xx

  • Hi Eluzabeth, wishing you all the very best for the future and your partners recovery. I had very similar injuries about six months ago - felt like the end of the works at the time & some days now it still does, but recovery wise - lots has happened. Walking like Bambi eventually stopped (thanks cat - such a helpful description :) wish I'd thohht of it), sleep improved after several months, other things are up and dune but slow change does seem to happen like other replies have said. The hardest part is the length if time it's taking - so my advice will be : keep hanging on. It's a long road and this is very early days yet. No need to reply - everyone here knows what you're going through :) take care x

  • Hi Elizabeth.

    All I can say is hang on in there and try and keep positive. My brother who is 76 fell down the stairs and ended with bruising to the brain and several bleeds that was 11 weeks ago he came out of hospital/rehab last Monday. Like your fiancé his speech was fairly good after the first couple of days he was just talking rubbish. It was very frightening for his wife and myself particularly during the early stages when he went from childhood to working life to current life often within the same sentence. It is frustrating that Drs can't give you any idea about likely progress as you want to know what to expect and you want to be given hope.

    My sister-in law and I started keeping a diary of any improvements, and backwards steps, he made and being able to talk to each other about he said that today he remembered that today he is on stage 1 thickening fluids he walked 2 steps. If there is anyone else you can celebrate his improvements and discuss his setbacks with try and do it.

    I also found that reading the blogs and getting advice from people who have walked the same path invaluable so keep reading the posts and Headway will always give you advice. Stay strong

    rankjac

  • Hi, my son had his accident last July. Hes 12. Had a bleed and surgery to remove clots, and in a coma for 7 days. Its been 7 months for us and we are moving forward all the time. He walks and talks and does most things he should be coing. Its so different with everyone i know. Travis is so strong minded, its really helped him fight to grt his life back! Keep your strength up xx its hard but worth it! Xxx

  • Welcome, you have found a great forum with the most amazing people for support. As already said, it's very early days but I wish you all the best and will keep my fingers crossed for you both. Lots of love. xx

  • elizbells meeeeeeeee !!! i suffered a stroke 4yrs ago which completely changed me.....welcome to steve mark2.

    now heres the worse part , he doesnt know he s being horrible....i only knew becausemy wife picked me up.

    sorry to be horrible but you need to be prepared and you may even split as a result.

    so what can you expect when he is finally released from hospital definately not the person he was before.

    mood swings aggression forgetfulness bursting into tears for no reason noise intollerance inappropriate behaviour / speach in and out of the home strange sexual demands not just to you but to others as well.

    my suggestion is you get as much information as you can, best place to find that is your local headways group.........whats so special about that i hear you ask.........well you will meet people who have been where your fiance is now listen to their experiences and just as important will give you a chance to meet carers and partners of those affected and their experiences and how they cope and deal with issues.

    you can find your nearest group on this site.

    good luck theres a long rocky road ahead but dont forget youve got your extended family ............us!!! we know what the docs dont because we re going through it so are the best people to give advice

  • Everyone reacts and makes progress in different ways after head injuries and it's common the person with head injury won't realise how they have changed. As you say it is early days so some confusion will be normal. I had head injury in 2012 and made quick recovery which actually felt slow. I had car accident in coma 8 days and can say there was some concussion like certain things would happen and I wouldn't be sure if it was a dream or not later. I still can't be sure over certain things but I guess it was all real as I know the 1 thing I hoped would turn out to be a dream was real. Being told my dog had died. He was in the car with me and got killed. I was in hospital a month after coming out of coma and had to have Physio to walk again. I don't know if your husband needs Physio. My mum has told me since that her and my man expected me to come round and be back like I was before but unfortunately that doesn't happen. Most people or all people are effected in some ways rest of their lives. I feel that I'm back to how I was before now but my mum notices differences in me. I think main thing to remember is try to be patient with your husband and remember he can't help how it effects him.

  • Hi everyone, haven't been on here for a while as I've been very busy looking after my fiancée Mark at... HOME!! He made a dramatically quick recovery in hospital and was allowed home after just 3 1/2 weeks!! He is doing remarkably well, the post traumatic amnesia fizzled out and he is almost back to normal. It's incredible, I can't believe how lucky we have been! He is suffering from severe headaches but apart from that he doesn't seem to have any other lasting damage! I literally can't believe it! Thank you so much all of you for your support and lovely comments and advice, it really helped me through the most difficult time of my life and I can never thank you guys enough. Miracles really do happen xxx

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