Parents of TBI survivors

After a tearful call to Headway this morning about my daughter who suffered TBI 2 years ago and is having problems adjusting, they suggested I try this forum to contact other parents. My daughter is 22 years old and I’m looking to ‘compare notes’ with other parents and maybe even offer some support to others who are just finding themselves in this position and not knowing how to support their child.

47 Replies

  • You might want to also check out this private FaceBook group. It is a tremendous group. "The Personal Side of Traumatic Brain Injury" Both carers and those with brain injuries are part of this group.

  • Thanks so much sca2013, I’ll have a look.

  • ruthiet29 i have an abi i suffered mine 51/2 years ago, the problem your daughter is having is realising we are not the same people we were before our brain injuries.

    im on meds for aggression and and mood swings, im noise intollerant, i behave inappropriately at home and out, hate crowds, extremeley rude, dislike strangers.

    since my bi ive been diagnosed witn epilepsy and adhd, i see a neurologist and a psychologist.

    my my advice ruthie, would be to look up yor local headway group, they meet once a month, your daughter will meet others with a tbi abi who shell be able to talk to, and youll get to meet meet the long sufffering darlings who pu up with us.

    welcome to the family

    steve x

  • Hi Steve - thanks so much for your honesty. Heartbreaking to hear of you suffering. I think you’re right, she is realising that she’s not the same, but doesn’t know who she’s supposed to be anymore. She has some of the behaviours you mention but also internalises a lot and tries to manage her life through controlling her eating. As parents we simply can’t fix this and that’s the hard part. We will never give up trying to help her, but it’s exhausting. Trying to hold down full time jobs, because we have to not out of choice, is just overwhelming. Thank you and best wishes to you and your loved ones. X

  • Well done! Not all parents and siblings react like this - my mother died suddenly and my father and siblings, nephews and nieces all abandoned me and mine. No reason given.

  • Hi, re-reading this it occurs to me that part of the block you are experiencing is because you have characterised the situation in a way which will not allow you to move forward. 'Who she is supposed to be', 'controlling', 'fix this'

    If you re-frame your perspective it will be much easier but that does depend on liking yourselves and wanting to be kind not critical...

    Everyone is on a life journey and really virtually no one is remotely interested in them or wastes any time thinking about who they are supposed to be! We are who we want to be and that is a result of how we progress though life, the decisions we make etc. It is flexible but we are still fairly 'hard-wired' which can make it tricky at times.

    As for control - it is really helpful to accept that after a TBI your 'unconscious' brain (the part that runs the ship) is in the driving seat. Normally it stays in the background and indulges/services the conscious brain - no matter what it wants/does! You really have no choice but to co-operate as this doesn't change...

    As for 'fixing' - that is not going to happen as a brain injury is far too serious/fundamental/irreversible to be 'fixed'. On the plus side we are lucky to have survived - many don't. If we decide that we really don't want the new deal on life there is always the nitrogen option. But life is still there and no-one can predict it. I had two wonderful children after my TBI and I am not sure why but my unconscious brain did not clobber me with pain when delivering them - the midwifes were puzzled as I did not even know that first stage was happening and second took an hour and I was 'away with the fairies' as my brain ran the show! Occam's razor would suggest that it was a result of my post TBI brain.

    Also access to the internet and FB messaging with my daughter at Uni are simply wonderful - and not available to my mother who was left with just my father...

    Actually this ought to be easier as the accident recedes into the past as you will not really have a clear idea of how things 'ought to be' to adhere to! And actually everyone's life is a journey like this and fixed ideas only lead to unnecessary stress. Give it a go, let yourselves off the hook and start observing the phenomena of daily life, discuss them with others eg at Headway and discover a whole new life. All the best!

  • Hi Caroline - great perspective and yeah we try hard to be kind to ourselves. The nhs were really good at explaining the potential impact of her new brain, but obviously give you all options as they could never tell how each individual will be in years to come. So we’re all in this acceptance phase I guess and all trying to adjust as a family. Being in the thick of it each day can fog perspectives and I have to say, this forum has been great at allowing me to step back a bit. It’s invaluable to hear from people with bi who have gone through their own versions of this chapter and are happy and fulfilled.

    Thanks again, Ruth

  • carolineld that was a great help x also if i have a problem i talk to a tbi /abi expert me !!!. i march around my lounge talking about my problem, sometime swearing because in mid conversation with myself i cant rember the word im looking for and my wife isnt there to play word games with.

    eventually i find the word and eventually sort my problem, works for me.

    steve x

  • Ha I know the elusive word phenomenon! They do arrive though - even in the middle of the night...

  • ruthiet29 theres a book id recommend you read, its how the person with the tbi thinks hes progressing and how his wife see it differently.

    the book is called within touching distance and its by james cracknell and beverley turner.

    if you think the name is familiar james was an olympic rower

  • This forum is lovely, and hi! There is something about face to face though.

    Headway local groups helped me, and others.

    See parents/partners as well since it’s always difficult for them if not more so than for the injured.

  • Hi Roger - thanks for this and hello! we’ve met the local Headway group and they’ve been great. Hoping to get my daughter in volunteering soon to try to help her to re-focus on something other than her overwhelming emotions and give her some social interaction which she sadly lacks at the moment. It is that bit for us as parents that we’d like to have contact with others. I’m familiar with the website and I’ll certainly revisit Edinburgh’s group again to see what they have for Carers. Thanks again

  • I’m going to be personal now, ie British was of saying I may be rude but I’m going to do it anyway!

    What support has she had? It’s easy to miss out on support that you may not even know exists? NHS is brilliant but navigation of it is a hard work.

  • She’s been offered OT, neuro-psych, physio on nhs but is refusing everything. She’s 22 so we can’t make her do anything unfortunately. We’re exhausted.

  • I was supposed to have neuro-psych, OT Physio after Hospital but I was conviced I was fine!

    4 years on, I had realised I wasn’t fine, and had assements and what from all of the above services and more, it’s not uncommon to be a poor patient, it takes time to be self aware it is difficult to see it.

  • Morning Roger, ok that’s interesting. It’s good to hear what you’re saying having gone through this yourself and have managed to navigate your way through it. I know u must be challenged every day still. Thank you, you’re all superheroes!

  • She is probably not ready for the neuro-psych but the physio is 'the sooner the better'. Once you have a head injury you have to become the handmaiden of the brain in many respects - before the TBI was one's amazing servant which we all take for granted and many are even inclined to abuse... NB if one resists doing this the brain can become quite ruthless in flooring you when it feels the need! Your daughter might well benefit from talking to others who have this challenging path in life to get a broader perspective?

    Oh and do look after yourselves - mindfulness is a great modern tool I find! (and I am just listening to the Rag'n'Bone man btw)

  • I’ll get back to you later on all your posts but love rag n bone man!!

  • It is really early days for you! I was 26 when I had my TBI and 28 years 'down the line' and now experiencing the effects of aging which my neurologist never mentioned. Our brains do an amazing job adjusting and coping with what they have to work with... But as we age we lose brain cells - everyone does - and it runs short of options... Plus of course every TBI is unique by definition and hence the victim and their carers are the experts on observing the reality. I have always been very grateful for and supportive of my amazing brain and its capabilities and do everything I can to assist it. I get the distinct impression that it appreciates my cooperation too and both communicates things and doesn't clobber me as hard as it might were I not!

  • Hi again Caroline - it is early in her progress you’re right. I know things will change constantly. It’s seeing her so unhappy, with hardly any independence that scares me I think. I just want to kiss it all better like I used to - but I can’t. She was 18 months into her degree with a part time job before this happened. The good thing is she’s surrounded by a loving family and we’ve just got to be patient and listen to her when she’s ready to talk.

  • Welcome Ruthie. As Steve has mentioned, adjusting to the changes in ability/personality after brain injury can be a long & challenging process.

    I hope you and your daughter will find the support and encouragement needed to enable your girl to find a decent quality of life, and with an injection of optimism & humour for you both.

    All best wishes, Cat x

  • Thanks a lot Cat. It’s just so difficult to get her engaged with life at the moment. She tried returning to college last year but it was too difficult for her so she made the decision to withdraw. Since then she’s been on a slippery slope emotionally and I’m scared of where this is heading. We try listening, talking, cajoling, making her laugh... but she’s refusing any professional help with neuro-psychs, any form of rehab. She doesn’t want to go anywhere as she doesn’t see the point in anything and we literally ignore her wishes sometimes and just insist she comes with us. It’s hard as a family to know what to do and how to do it.

  • Perhaps it's more difficult accepting the sudden limitations at an age where we'd normally be visualising our potential far into the future. I know how difficult it's been for me, even at retirement age.

    It'll be different for each individual, depending on personality, but is it possible that (like me) your daughter will only find her way in her own time and needs to complete a grieving process for the part of her that's now lost ? Acceptance of brain injury issues can be a protracted business.

    I'd be tempted to ease off any pressure and present options for going forward quite casually. Perhaps even the gentlest persuation might be seen as your acceptance of her new status when she's not ready to accept it herself because, for her, it would be accepting second best.

    I'm sorry you've been given such a challenge Ruthie when you'll already be facing your own sadness over your daughter's issues. And there's so much trial and error to go through ; I know it can be exhausting.

    I hope your daughter will make peace with herself and hit upon new goals before too long. I'm sure you'll be ready & waiting with love and support m'dear. Best wishes for happier days ahead.

    Love Cat x

  • Thanks Cat xx

  • Our daughter is 21 and she has started college. We are 11 months into her recovery from a an ABI. We applied and got an EHCP Education and Healthcare Plan which will help her access 1:1 support to get the education she may want, based on and starting from her needs. I know you said she tried college but maybe an EHCP will help her access education in other ways? It sounds like she might be interested in Nutrition (or Animals as is the case if my daughter or drawing etc.) An EHCP will last until she is 25.

    Speak with the SEN Special Educational Needs department from your local authority to see if this is a route you might want to pursue?

  • Hi there - thanks so much, I’ll definitely look into this. She decided she wanted to do a smaller modular-based home study to test how she gets on. She can do this over a year so can pace herself. She got the first introductory paperwork today so we’ll see how she goes. Thanks again

  • Best of luck with her course Ruthiet29. I also noted your concern regarding your daughter's controlled eating. I think you are right to take note, a friend of mine's daughter (no BI) is getting fabulous support for her controlled eating from:

    Best of luck xx

  • Thanks phoenix68 x

  • I hear you, Ruthie, and you are not alone.

    For the first couple of years after my husband's brain injury, he was in a very similar mindset to your daughter - just brushed any changes in him under the carpet. And you can understand why because dealing with the trauma of what's happened is just so tough. But I was helpless and it was exhausting - neither of us knew how to adjust.

    Fortunately - and I use this word deliberately - Alan (hubby) hit rock bottom. He started a new job that flagged up his injuries and he was forced to deal with the changes in him. In truth, second to the TBI, this was the hardest thing to go through. It was heart-breaking watching him deal with it but for the first time I had to let go... I couldn't fix him and the support he needed could only come from professionals, all of whom you listed. Difficult as that was, it took the responsibility off my shoulders and allowed us both to recover and cope.

    Since then Alan has moved mountains. He is so strong, resilient and accepting of what happened. He can now openly talk about his brain injury, something he could never do before. He now attends monthly Headway meetings and in April last year, he ran the London marathon for Headway and raised nearly £5K. A transformed man. An incredible man. A happier man.

    We still have struggles with the changes caused by the TBI but we now know how to manage them because of the support.

    As parents or partners our instinct is to fix, save, rescue but all we can do is support. Your daughter will need to face up to what happened - and she will - but you have to let the slippery slope run it's course. Hard as that is, it will be the best thing for her. She is so young, which has mixed blessings; less emotional maturity to deal with all this but a long life ahead in order to be able to.

    So much of the recovery focus with a TBI is on the physical, but no one tells you about just how hard the mental and emotional part is, right?

    You sound like amazing people. This will get better. Have faith. Keep strong and keep reaching out.

    Take care.



  • Hi Jo - I read your message at work today and a lot of what you say makes sense. So much so that it calmed me down a little. I suffer from flashbacks and relentless panic attacks after the accident so can go from zero to that sickening stomach churning fear in seconds. It’s getting better as time moves on but this latest phase of her not eating (she’s so thin) and being so desperately unhappy triggers this sheer panic. Almost as though I’m bracing myself for another bad thing to happen. It’s exhausting keeping it under control. Counselling has helped with tools to manage it but, I wonder, how did you cope?

    I completely understand when you say that Alan had to be at rock bottom before something was done to help. You just want someone to take that responsibility away, even just for a while.

    Thank you again

    Ruth xx

  • I can sympathise with your plight completely. My son had a cardiac arrest in July 2015 aged 18. He had just finished A levels and looking forward to a gap year before going to university to study politics and international relations. His whole life has been turned upside down as well as ours. I have given up work in an attempt to support him but life is very hard for us all. He has made good progress but is left with a poor memory and cognitive difficulties. He cannot accept that university is not realistic and doesn't seem to be able to move forward with his life. Try to stay positive although I know how difficult that can be.......

  • Hi Jane - so so sorry to hear that. Just so shocking for the family. It sounds like mine and yours are at the same stage of this recovery phase with very similar cognitive impairment. You’ve probably seen some of the comments on my post where people are talking about this lack of acceptance of change. It feels like we’ll have to ride this storm and do the best that we can. There’s lots of information out there but it’s applying the knowledge to any given situation at home, at the time it’s needed that’s the problem. I remember the neuro-psych commenting that my daughter will attempt to manipulate situations without actually having the thought process to work out what she wanted to gain from it which can cause a bit of chaos. It’s so complex, but yes you’re right, hope, love and positivity have to be at the forefront of every day.

    Thank you

  • We are still struggling to accept what has happened. It is so difficult to come to terms with especially as my other son has just gone off to university. We try to take one day at a time and not worry too much about the future. Take care xx

  • And you too Jane. Please PM me if you want to chat xx

  • What has been the impact on your daughter in relation to what her presentation is now?

    And well done for seeking advice and support. There is some good tips for you here x

  • Hi there - good question Linda. Let me see if I can make sense of the answer..

    So, she has global brain damage because she was hit by a car - hit the windscreen which impacted the front of her brain then was thrown onto the road where the back of the brain was damaged. In between were bleeds where her brain was obviously severely shaken. This means that now she has mainly short term memory loss with some long term memory gaps, although amazingly it’s only about 6 months she’s lost. The short term memory issue means she’s vulnerable if she’s ever out on her own, taking public transport; it has to be a well practiced bus journey that isn’t too long or she’ll forget how to get home. She has difficulty planning, concentration/focus depletion, lack of insight/ambition. She can fixate on things and sees no point in doing anything. Her moods are completely random.

    Oops! Went on a bit there sorry!

    There are some great people with great support here. X

  • Thank you for your reply, and your reply is valuable. Just one more question, what help or input or advice have you been given up until now, outside of approaching Headway.

    I am pleased you have had a good response, and I hope you continue to find help through Headway for you and your daughter. Everyone here has there story of a head injury and the impact on themselves and their family, as I have.

    There is no needs to "oops", it is okay to me to tell it like it is. With very best wishes to you and your daughter xx

  • I have seen your answer re help in another reply

    I spoke with a volunteer at my local Headway who had been in an RTA and was in hospital for 3 months. She said she felt safe on the ward, and when she went outside of it she became anxious, panicky and find it overwhelming. Added to this she had to get used to her new self and her family had to get to know her new self. It was hard all round.

    It may be that this is how it is for now, and that to take it day by day is all you can do, some days will be better than others, and that some activities will tire her out.

    Keep talking to us and Headway xxx

  • Part of her confusion is - she doesn't know what she can and can not do. Hope you purchased for her the Brain Injury Workbook from Headway. Little exercises to explore ability. Until I had this, I was unsure of my abilities. Once you know which abilities were untouched and which were impaired and which are not obtainable right now, the confidence comes flooding back. Its a state of being out of control and NOT KNOWING what you know and the emotions attached to this are hard for any non BI person to understand. Help her take control.

    As an aside, I was hoping Headway was going to sort it all out for me. I'd had the workbook for a year and done maybe one third of it. I arranged a face to face one to one meeting with the local headway office volunteer coordinator. In this meeting, I was expecting her to say, yes come to sessions on these days and within a year you will be fine. NOPE. What she said was, people who have a university degree, who then experience a BI, they tend to complete the workbook on their own. They tend to lead their recovery on their own. They just get on with it. Took me a week of long walks and tears to accept her words. I thought, if they can do it, I can do it. Those words may have been harsh to hear but it sure propelled me to get off my arse, stop the negative downwardness, explore my abilities and recover. The Headway volunteer may have been telling me the truth or she may have just spotted something in me that was passionate, determined but lacking confidence. It matters not if she spoke the truth. It was exactly what I needed to hear. That was when my recovery turned around.

    You can help her by reminding her about things she used to like, if its her memory that has gone. Take a whole evening to sit with a photo album looking over times when she was younger. Preferably with the TV off with no other distractions. If others present, they are also focused on her. Its also as much about sharing your energy and love with her. She may say, no I don't remember. Smile. Look her in the eye. Convey the confidence to her that you knew she once had. And tell her the story of herself. In each photo, find a quality and strength that she used to have. In talking, speak as though she has the quality now. Believe me, its somewhere in her memory banks.

    What exactly does she explain she can't do now? Not what you think she can or cant do. It's what she perceives her abilities are. That is where to start.


  • Hi there - what great advice thank you. I’ll organise to get the workbook and see how she feels about it. At the moment she sees no value in anything, and I do mean anything.

    When she was in rehab for a couple of months we made her a memory board with photos of all of us with her in different places as well as pics of her favourite singers/actors. We’ve been through loads of photos and amazingly she has pieced a lot of her memories together. We carry this on even now with any photos we find and ask her about it in a fun way.

    We’re aware now that she needs her quiet space through the day and if we go out for dinner, for example we make sure she looks over the menu online so she can choose well ahead of getting there and we sit her so she’s not facing crowds. She doesn’t even know that we’re doing this we just make it part of every day life.

    We talk about her limited memory of when she was discharged after 4 months and laugh with her at some of the things she’s done (helping to unload shopping one day, we left her to it for a confidence boost, but have never ever found the tray of chicken...)

    What has resonated with me in your message though is the last paragraph. It’s about finding out what she thinks she can or can’t do.

    Thanks so much for listening!


  • She sure is lucky to have you folks looking out for her. Seems you have already worked out her sensitivities and are playing to her strengths which is wonderful. It is also clear she has been doing some of the most emotionally challenging healing of having to piece together her past. 2 years is not very long in BI terms and she is young enough (brain keeps growing until you are 21yrs old) for there to be every chance of gaining back an enjoyable quality of life.

    Each of those photos of her in different places, she formed a little part of her personality in each, she discovered something new about life which built who she is, how she feels about the world, and based on all of that, what decisions to make. Without these memories, the turf under your feet gets ripped away. You have no idea what to choose, what to eat, what to read, what to do, who you are, how you relate to others, until someone somewhere tells you what activities you used to do. Then you repeat them. And if you enjoy them, it stays. Often times, the new you doesn't enjoy the old activity. So then you are stuck with, ok so now what do I do if I don't enjoy what I used to do.

    For me the executive brain also got lost, which plans, and projects activity into the future, such as desires, aspirations, strategy, role-play, scenario planning. So you wake up, you don't plan, you simply sit and wonder, ok should I eat, am I hungry, am I feeling ok, how do I feel, is that pain, is that different to yesterday, I cant remember yesterday, panic, am I ok, what should I do and round and around it goes. And all the while your burning up energy simply thinking, which reduces communication effort, so you appear withdrawn to other people. Until. You decide to take control. Make lists. Follow activity list. Make a cup of tea. Success. Something completed. Confidence builds. Explore capability. Use Youtube videos of 10 min workouts or yoga sessions or mindfulness meditation to explore physical and mental capability which pumps the needed oxygen into the body.

    Headway also have a great 8 page factsheet in PDF format you could print off and give to her to scribble on. It helps to focus on .... what can I do, what cant I do.... not tried that yet so I don't know.... etc etc

    Its called Executive dysfunction after brain injury factsheet.

    I remember having this print out in A4 paper for about 3 months and would glance at it daily and take one sentence at a time. I would scribble on it. and when I discovered another ability, I would tick it off the list with a happy face next to it. Its a new journey. The more effort expended exploring in the early stages or on repetition in later stages to gain a new skill, the more quality sleep and oxygen the brain needs to heal. More headaches occur during this time. I would do a 15 min walk around the block to help headaches. Tripping over pavements, knocking into walls, all sorts. But so long as I followed my activity list, I started to come right, feel better about myself, accept the failures, look forward to the next success, I was progressing.

    I've rambled now, hope some of it provides insight into just a little of what your daughter is experiencing. She is very lucky she has family that she can laugh about a mislaid tray of chicken and also can celebrate when she achieves something of importance. Its those milestones that keep you keeping on.

    Welcome to the forum. There was at one stage both mother and daughter posting, also both husband and wife, posting on this forum. They could use this as a way to understand each other better.

    Best wishes to you Ruth, and to your daughter.

    P.S. I would walk around and visit places I used to go in my early years of up to 7 years old but also up to teenage years. Sitting in these places quietly, I could suddenly hear the memories playing out again which opened them up to me. Worth a try.

  • Welcome Ruthie - you're definitely not alone... Your words remind me a lot of the first two years of my son's TBI. He had a diffuse axonal injury, multiple areas of severe damage and the prognosis was dire at the beginning. We are four years in and we are still seeing quite significant changes. He is a still a 'moving target' as far as we are concerned - surprising us with what he is now achieving. He was pretty unaware of his personal situation until year three - and that's when the real frustrations started to kick in. He would certainly understand how frustrated and demotivated your daughter is feeling right now.

    Our son is now cooking, driving and living independently. This year hopefully he will begin his mini-journey (but max achievement) back to paid work. There are still some physical things that are still really hard for him to do due to lack of coordination (he used to be a great athlete and drummer...) but he's trying to stay motivated and practise them. Short term memory is still very poor but he has learned strategies to help recall and depends a lot on his smart phone and smart watch - which remind him of his appointments.

    We have all had to develop our sense of humour (especially him) - but this is certainly a 'journey'. It's hard to say how fast you are going to travel but with the kind of love and support you are showing your daughter, she will get there.

  • Thank you so much Elkay. It’s just so heartwarming to know you’re all out there and have been or going through something similar. I befriended a lady who’s brother ‘followed’ anna into the trauma room with head injuries/coma etc. Right through to the same rehab unit in Sheffield. We still keep in touch 2 years on and we understand what we’re going through. But it’s still just a little different when it’s your child.

    It’s so good to hear your son is still progressing and fighting for his independence. I’m hoping that my daughter will come through this fog of depression and see the light at the other side. She’s got so much to give. She loves to help people and she has inspired others with her Headway posts and even working with the BBC building a VR experience to show ppl what it’s teally like to have a head injury. So we’ll keep cajoling, laughing with her when she’s up for it, treating her just like everyone else in the family and hope she sees her potential.

    Reading these posts has certainly given me hope. When you’re right in the eye of storm it’s hard to step back sometimes, but you’re all helping me do that.

    She’s amazing and I never get through a day without being truly thankful to the nhs, her strength and anything else out there that gave us her back.

    Thanks Elkay keep in touch x

  • I'm not surprised but honestly she making bad decisions. The best support anyone with a TBI can receive is from the Neurological service.

    I can honestly say without the help of a Neuropsychologist I wouldn't be writing this!

    I hope this helps her to makes the right decision.

    I do wonder if she understands what all these titles actually mean, who want to see a psychologist(?) but a Neuropsychologist is a totally different discipline, local Headway should be able to explain what each person actually does.

    A long journey but all the best.

  • Thanks Sealiphone - we’re trying to get her engaged with neuro-psych but so far she’s refusing. We’re trying this week once again to try and introduce the idea to her, in a different way, so we’ll see how it goes.

    It’s a case of trying different things with her.

    So good to hear it helped you.

  • Ruthiet29 ,I realise you may not want your daughter seeing that your fussing. So you may want to copy & print my response and tell her I'm coming over if she doesn't realise, I'm always right!!!

  • Hahahaha! That’s great Sealiphone I’ll make sure and tell her.

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