Coping when someone you love has a brain injury

My 20 year old son fell 20 feet last Wednesday. He landed on his head. He had a large extradural haematoma, has fractured his skull and has a few other injuries. He is still in ITU sedated and ventilated. He has woken up, but when they lighten the sedation he gets too agitated and they have to restate him. Has anyone else out there been through anything like this. Have spent a week at an ITU bedside and I'm a wreck!

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  • I was 3 weeks in a coma in HDU and as I eventually and gradually came round I used to get quite agitated, this lessened as I became more aware of my surroundings, but my family did say it was the worst time ever for them.

    Patience and time are the watchwords look after yourself and rest when you can, he is in the best place for him and will need all your support.

    Talk to him a lot, he may be able to hear you, I remember snatches. My son and daughter used to read to me, leaving me with my iPod running when no-one could be with me, so even an audio book would help.

    We're here for you as is the Headway helpline just ask or post to vent feelings we understand.

    Love Janet x

  • Oh D.mum you have my sympathies. I remember nothing of the first three weeks but I'm told by my son & daughter that I was constantly agitated.

    I had to have both hands permanently bandaged to prevent me from pulling out my catheters and tubes, and apparently I was angry and swearing most of the time.

    As Janet has already said, it is a waiting game ; a tiring and thankless one, 'til there is the smallest sign of improvement.

    My daughter used to unbandage my hands on visits so that she & my son could hold my hands, then re-bandage them when leaving. I feel I remember that contact and that it was so important & comforting.

    I'm so sorry for your son's misfortune, and all the anxiety you are suffering. Meanwhile, remember to take care of yourself i.e. eating & sleeping (if possible) because your son is going to need your support when he begins his recovery.

    My heart goes out to you both. Please keep posting if & when you can.

    Sincere best wishes and a great big virtual hug, from Cat xx

  • I can echo what Janet and Cat have already said. I too was in a coma for three weeks (in another country) and upon awakening I can remember the fear, the terror, the confusion, the hatred of medical staff, the sense of utter hopelessness and just the outright feeling of despair. I remember lying in that damned bed trying to work out where I was and why I was there, who the annoying strangers (friends and family) were, what my name was and just what the point of everything was. It was a hideous time and I wouldn't wish it upon anyone.

    Patience, patience and the keyword here... patience. It will get better, it just takes time and more time. Baby steps, a little more every day. It really is hard going but hang on in there. It DOES get better and easier, I swear to you.

    Very best wishes, I and many others on this site are thinking of you

    Baron/Andy

  • Whether induced or 'natural' a pattern has emerged here already and it's the 3 week coma. I've seen this period mentioned by others too. Just a thought....................................

  • i agree time,paitence and pure beailf that he will get better,its hard but it works! when my hubby,was in hospital i wore bright colours to visit him and was always postiave.hugs and healing xx

  • One tip I can recommend is to bring photos of family and friends in and place them at the bottom of the bed. There is a strange reason for this and not one you would immediately think of. The idea is to humanise him to the rest of the nursing staff, they get so inured to the plight and pain of individuals that they can get blasé to the needs of the patient and treat them like just another number. He will receive far better and more personal care if the staff see he is a person with a life loves and family. This was originally a tip from my brother in law who is a hospital consultant. It also helps as when he wakes he will see pics of the family around him.

  • Also the family dog or cat. It gives nursing staff an easy way in for conversation, 'is that your dog? What's it's name?' Also photo's of them with friends.

  • I was so unsure about posting on an online community. Have never done it before. All your replies are making me cry because they're all so positive. Thank you!

    They woke him today, got him off the ventilator but he was too agitated so he's back in induced coma and on vent again. But he did respond to commands when he woke up and he definitely squeezed my hand fleetingly last night. I'm going to see him shortly. We're only 1 week into this - so clearly a very long way to go. xxx

  • Hi,

    Fortunately I haven't directly been in your son's place but as others here have said you do need to make sure that you get the rest you need whist at this stage because you will need the energy later.

    A close freind and fellow band mate of mine had a serious push bike accident (hit and run) and despite medical predictions he made a much better recovery than the one forecast and a I swear it was because of the devotion and work his wife put in.

    When I visited she would ask me to leave the room and then come back in to try and get his short memory working again which helped him a lot. So whilst he is at present in the best place possible for his immediate care and as the others have said important to be there for him your biggest energy drain will likely be later when he properly comes round so take the best care of yourselves now and rest as much as you can.

    I truely hwish you and your son well and remember that the medics although supportive and comforting do tend to be pessimistic in their prognosis.

    I've recommended KNIFEMASTERS suggestion as my Aunt was a nurse and matron often in intesive care units and has said the same about personalising your sone to the staff. Another thought is to use his name to them as well "John, my son, seem to need his mouth moistened". The use of the christian name is personalising as well.

    Take care and wishing you all well

    Sporan

  • I was in exactly your sons predicament, I fought them for weeks before they could bring me round successfully. Four years later to the untrained eye you would think I was just like any other normal person. Just hang in there, it's going to be a long hard journey, but people do recover, expect problems and complications but they are challenges to be overcome not submitted to.

  • It's to soon to make any judgement but you have optimisum on your side. Allow the doctors to do their nit then take it from there. Everyone is different.

    Take care.

  • Reading this post/replies made me cry, felt SO sad, as I was eating my evening meal. It's SUCH a tough AWFUL thing for a family to go through, HELL. I haven't experienced it from THAT side but I 'felt' it when reading and often think it's tougher on families than us with the brain injury. BOTH awful though, AWFUL for everyone involved.

    And it goes on & on & on = for life. No cure, we work SO hard to learn/adapt and families do too PLUS doing/helping with all the stuff we can't do/need. And THEIR needs even more neglected than OURS - and ours are mega ignored, not counted, neglected so that's saying something.

    So many friends/families working long hours every day every year and NO respite usually and often unpaid, get ill themselves (and all those extra costs on heath service/society/insurers) coz no help or support (or homes, transport, EVERYTHING I mean NOTHING? made EASY for us to try do much as poss ourselves) for them or us.

    So MANY people affected and all so invisible, just carrying on, best they can, behind closed doors mostly.

    Trying to talk about all this (because important and big interest) but NOT in public in person - I need to do it from home, hopefully with cartoons and pix = a goal. NOT demonstrate make BIG fuss coz not ME, try do it MY way, best I can.

  • hi, I was in a similar situation with my partner last autumn. He was in an induced coma for the first few days and then didn't come round when they took him off the sedation. They had to put him back under the drugs when his brain pressure started spiking and his temperature went up. After two weeks he was starting to respond and react slowly. We were told to expect the worst as the injury was so severe. After eight months he is walking with the help of physios and has retained all his memories, characteristics and personality. He is still in a rehab unit and is unlikely to come home for some weeks yet.

    Brain injuries are so diverse and the legacies can be very difficult to predict. I would just say from my experience hang on in there. Talk to your son and keep making physical contact. Its apparently been shown to reduce blood pressure etc. I'd agree with the suggestions made above to personalise your son and tell the staff about him.

    The other thing that the staff and my family made me do was to pace myself. My partner's family live 6 hours away so for most of the time it was just me. Once he started to come round it was clear that it was going to be a long process so I had to find a way of managing work, my own mental health and providing the necessary emotional and physical support for my partner.

    I realise that it's different when it's your child but if I can do anything or you've got any questions please let me know. I found this group really useful, particularly in the early stages so would like to return the support.

  • Oh yeah talking is good, I could hear my wife's voice even under coma telling me that I'd had an accident and everything would be ok

  • Bless you and your boy x Nothing to add to what has been said above but I will keep you very much in my thoughts and prayers over the next few weeks.

    Look after yourself: your fighting for him is so vital at the moment and you need all the strength you have x

  • Hi

    So sad to read your post which brings back so many memories.

    My son had a brain haemorrhage 4 years ago and was in intensive care, sedated and ventilated for 10 days. The doctors tried to reduce the sedation on several occasions but were concerned that he was having seizures so sedated him again. It was a terrible time but a friend told me to take each hour, each day at a time which I tried to do and really helped.

    When he came round he was irritated with me which I found really upsetting, he explained to me later that he was angry with me and thought I'd left him in hospital. He didn't understand what was happening.

    I agree totally about taking in photos not only for him but for the nursing staff to have some idea of who he is as a person and his life.

    Quite by chance, when my son was transferred unexpectedly to a hospital miles away, I had some photos of him and his work, an artist, and photos of his children.The staff said how much that helped them to relate to him as a person.

    They also said take in his favourite shower gel, deodorant etc, anything familiar to him as even though he was sedated he may be aware.

    It's a waiting game, one step at a time. I really feared the worst.

    A miracle happened and I am so thankful he is here and well. He spent Just over 5 weeks in hospital.

    One major thing in your favour is that you've found this support group who will always get back to you and understand. By reading these posts you will get some understanding of brain injury no matter what type it is. You will see that everyone has something in common, similar experiences, behaviour, it is so helpful.

    Post on here day or night and someone will get back to you.

    Thinking of you at such a difficult time, one minute, one hour, one day at a time. As others have said look after yourself too as you'll need your strength as time goes on.

    Let us know how he is and you take care

    Love Alice xx

  • Yup, did the angry thing as well, I would shout at my wife telling her to get me the Fock out of here, and if I find my shoes I'm just going to walk, then I would bash myself with the anglepoise lamp next to the bed and hit all the buttons on the machine that goes ping! Then I'd refuse to talk to her for a day. We laugh about it now as we understand that wasn't me, it was Mr Brain Injury talking.

  • I so feel for you, it's such a helpless feeling, especially when it's your child that is hurt.again I can only echo everything that has been said.

    I spent hours, just talking to my husband when he was in the coma, all sorts of trivial things like what the weather was like, what to cook for tea.

    I am positive he could hear me so tried to keep my voice cheerful.

    Also made the staff write the name he is always called, Dicky not Richard & took his favourite pictures in.

    Touch is really important too, stroke his hand or arm, it seems to help with the agitation which seems to be a normal process.

    Again, make time for yourself, it's vital. He needs you so you must stay well for both your sakes.

    Thinking of you both, stay strong xxx

  • Hello Desperate Mum. My TBI was in 1967. I've no idea what went on in the hospital with me. I was unconscious for almost two months. When I awoke it occurred to me I had a different personality; virtually opposite to the previous me. I lost all my friends immediately, my girlfriend was gone in two weeks and in absence of the brilliant support available today my dear, late mum looked after me.

    Every case is different; there are 'text book' events during recovery but within that framework each is different. A recovery does not occur in a short time; mine took at least five years for some noticeable effects but the rest occurred over the next ten or so years. I'm as right as rain now, or at least I'm happy with the residual minor effects of petit mal, sound sensitivity, depression and a strange spatial awareness. The meaning of that is I'm a grumpy old git who goes into trances now and then and who occasionally bumps into people or things.

    I hope all goes well for your son. Keep an open mind. I am where I am now due to the love and care of my dear and now late mum.

  • Oh my love this brings it all back. My daughter who is 25 had a RTA last February and was in an induced coma for 5 weeks. I can still hear the monitors with alarms sounding and watching the pressure in her brain praying that it wouldnt get to a point that they needed to do surgery to relieve it. Its a hopeless lonely place and even support of loved ones doesnt seem to help. Niki was finally discharged in March this year after 10 months in a rehabilitation ward. The first few months were so hard as she was almost manic - kept turning round and round in bed, pulling out the catheter. At one point she wouldnt keep any clothes on. Gradually she settled and cognitively she is pretty OK but as she damaged her brain stem she has physical issues and cannot speak yet. I can only say just keep loving your son and let him know it however you can. It will probably be a slow process but I take heart from this site as peoples stories show that there is recovery from brain injury - it just takes a long time.

    Sending all my love from one desperate mum to another - I know your pain.

    Kath

    x

  • what a worrieing time for you, try not to loose hope.

    But it is very early days

  • I'm so very sorry to hear about your son. My husband was in a coma for 9 days... He also became agitated when they woke him (it was an induced coma)

    There is a journey ahead of you, but we are all here for you & definitely get rest & help for you. Headway has been amazing for us. Keep strong xxx

  • Hi Desperatemum

    How is your son doing? And how are you? Thinking of you xx

  • Thank you! Its been an emotional roller coaster over the last 10 days. Well the best news ever is that they have been able to extubate him and he's doing really well. He started to wake up on Friday and made the OK sign, which led to tears all round. They then took the tube out on Saturday morning and one of the first things he said to me was "This is my Mum and she's a nurse!" I was sobbing ( I used to be a nurse). Today he's managed to eat and drink a little and has all his drips removed. He's still in intensive care - and he's a bit like a very drunk person. He's better today than he was yesterday and is very very tired, but he is there. Despite the confusion his personality is coming through. He is talking some sense and some nonsense. He has a broken arm which he needs an operation on. He also has a fractured eye socket which may also need surgery on. But he so nearly died, so these seem trivial.

    Thank you to everyone for their posts and sorry I haven't been on here much. Just racing up and down to the hospital!

  • Desperatemum am sorry for you, and your caring anxiety beside your son and for your son with the fall. I being a victim of a head injury also when I was 20. Just bought to me the anxiety my parent must of had sitting beside me.

    As hard as it maybe you need also to look after yourself and rest. I spent after some time in hospital some time with my parents before going to a rehabilitation centre.

    Thankfully much of hospital life I have no memory of such as learning to walk.

    I wish you both well

  • Another update. He's now on a rehabilitation ward doing really well. They're planning for his discharge. His broken arm had a plate inserted. His facial fractures are healing. He had his hair cut and looks so much better. They are busy testing his cognitive function which is "average" and likely to improve. However. In some ways I'm more anxious than ever because we still don't know what the future holds. Will he be able to hold down a job? Will he be able to finish his degree? Will he ever get married!? As crazy as it sounds it's also terrifying the thought of leaving hospital. It's such a safe environment and there are so many unknowns at home. He has also said he wants to go to my ex husband during the week, and mine at weekends. To me that seems crazy because my ex husband is at work all day, and my work have given me time off. The thought of him alone all day fills me with dread. But they have to be guided by what my son wants and of course I don't want to force him into things he doesn't want to do. But I do worry that he's not totally able to make a reasoned decision. I'm totally mad with my ex who appears to be happy with this potential arrangement. My son doesn't even have his own room at his house. My ex said he could have his bed!

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