Caring for someone with a TBI

Hi All, I came across this forum when looking up information on the headway website. My husband suffered a TBI in June 2013 and has done very well in his recovery but he's now at the stage where he is trying to accept what's happened and adapt. He is very down just now as his work have capped his wages as he had to be moved to a different dept on his return to work to make things easier for him. He hasn't taken this very well and seems to be worse than ever with very low mood & repeating the same things over & over. I try to be supportive but it's very hard as feel so helpless. :( anyone else share experiences of living with someone with a TBI?

10 Replies

  • Welcome Rose. It sounds like your husband has reached that point where most of us do ; the one where we're tired of 'acceptance' and putting on a brave face, and which poses the question 'Is this it ?'.

    Has your man had any counselling/therapy of any kind to help him deal with his low mood ?

    Cat x

  • Hi welcome

    I hope you find the forum welcoming and helpful

    I agree with Cat it sounds asi if your husband could use support

    Get him to talk to his doctor

    Best wishes

  • My husband went through exactly the same thing so after chatting. To him I arranged a meeting with his neuropsychologist who managed to help him understand his situation, alternatively a headway centre might be able to help. X

  • Hi

    We are 3 years in & still things are very challenging. I really do feel your pain as the time you are in now was our most challenging.

    You sound to me like you are doing everything you can... just be there, help & support...

    You definitely need some help for YOU too. Is there a local Headway group that you can go to for the wife/relative of a brain injured person? I used to go to a meeting where we could help each other, share experiences, ideas & have somewhere we could vent (most importantly!!)

    In fact, that is one of the things that got me through that difficult time.

    The thing my husband found hard was not being able to look after me as he did before, he wanted to be the man of the house, and of course, this wasn't possible. He is a very different person since the accident (car accident on honeymoon in Mexico) and it has taken him such a long time to find out who the new person is... I think we are the ones who find out first though :(

    Really hope things progress & you can find everything you need to reach your 'new normal' xxx

  • Sorry, just to add. My husband had a neuro psychologist & he was great: also attended the Oliver Zangwell Centre which was a god send... Rehab xx

  • Thank you so much for all your replies. My husband is seeing his GP today. He has had some counselling and I have arranged some further sessions for him. I plan to contact the rehab unit where he was discharged from as I think he only now would benefit from talking to professionals about the extent of his TBI and the effects.

    Mowgli123 i really do feel I would benefit from venting so will research where the nearest headway group is for me. Thanks again all xx

  • As one who was cared for by my dear and now sadly late mum I only discovered what I had put her through in later life.

    My accident occurred just before my first job - apprentice telephone engineer - they sacked me 6 months later and this was the pattern for a few years until I learnt to accept what I had become, the why, what and who.

    Only then did I settle down and I suppose it took between 5 to 8 years to slowly occur.

    My recovery took 15 years but for all I know I'm still in recovery 48 years on, just takes a long time.

    My mum put up with a lot, I was almost 17 when my accident occurred and I became something I would now cross the road to avoid. She never backed down and I wouldn't be the person I am today without her help and dedication.

    What I'm trying to say, perhaps badly, is that your contribution to your husband's recovery is worth more to him than he will be able, at first, so show.

  • Hi Rose. I am a TBI victim, and had my accident in January 2013. I have lived by myself for the last year. Every time I try and organise something, I get very fatigued, and I now believe my neurologist when he told me I would take 5-10 years recovering.

    At the moment I am going through a very 'down' phase and seem to spend a lot of time crying! If I watch TV and there is a happy or sad occasion I burst into tears! I suppose it's an improvement as up to five months after my accident, I felt absolutely no emotion. I was asking my kids to please just kill me, and wondered why they were getting upset!

    When I'm fatigued now, I get quite slurry in my speech, and very wobbly in my legs. When I really battle to walk straight, it's a sure sign I am tired. People tell me I have improved, but I don't feel like it, - I have to take their word! I am very lucky that cognitively, I have repaired quickly, but there is no way I would be able to be employed yet!

    Good luck with your husband, and please feel free to write an time!

    We only TRY to help! 😃😉

  • welcome to the forum Rose, I hope you can find the answers for the kind people who make the effort the help others through their own experiences, I am new to this forum and have found some of the replies very helpful indeed.

  • Hi Rose,

    Welcome to the forum.

    There are a number of carers to BI here and so you should be able to get some direct advice from your side of the fence.

    I think anyone here with a BI will tell you it's difficult sometimes to realise the pressure and stress our BI personality puts on our family members, my poor old wife has her work cut out with my mood swings. Fortunately my family have learnt that when I get fatigued I get really grumpy, irritable and emotional. Getting really wound up and angry over the stupidest things that before would have resulted in a laght or a harumph rather than a bellowing and red faced rage.

    The biggest problem for me is trying to get others to understand that it's not just physical fatigue it's also mental fatigue which badly affects my physical capability and how litttle of either can cause it depending on it being a 'Bad' day, 'Better' day or the rare 'Good' day. Sometimes that fatigue can hit unexpectedly and out of the blue.

    I can really empathise with your husbands frustration at not being able to do what he used to do and the apparent lack of acceptance he's experiencing. It is REALLY hard getting used to the 'NEW YOU' that most BI discover they are.

    I mostly only respond to posts and put up very few of my own but the support and comfort to be gain from others posts and repsonses is major in helping realise that you are far from being alone and that most if not all that you experience along the way is common and quite normal with BI.

    I am sure you will get the support and info here that you so need plus contact with Headway themselves would also be of great benefit.

    All the bestest


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