My sons brain injury is destroying us

My son had a severe traumatic abi in 2005 when he was 25. Since then he has undergone inpatient rehab and now has 3 support workers and has just moved into a new property of his own. Great! you may say, isnt he doing well. Wrong, he is totally dependant on us and we still support him 24/7 . The problem is he has no insight into his difficulties and cannot see what we do for him (which he cant help). He resists his support, gets angry and verbally aggressive, he has memory and other cognitive difficulties and is sexually disinhibited. Both me and my husband are on depression meds. I lost my job through having time off, my husband has just been discliplined at work as he is unable to cope and we dont have a life anymore. There should be more support for families through statutory services apart from the 'token' carers assessment through social services which is a joke. We have other children who have not had our support over the past 7 years and i feel very guilty about that.

17 Replies

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  • my sympathy, I had an assessment carried out without even having been seen. I called them up and said I was going to pass on the assessment to the press,........... full service resumed

  • really wish i could offer some advice for you

    I was not a nice person after my head injury, had/still have a lot of those problems, but have coping mechanisms in place i spent 4 years going to lemington rehab hospital for all different therapies its mostly time and learning whats right and wrong i concentrate hard on peoples reactions to what i do now and this helps me know what is socially correct or if i have ovrstepped the mark.

    its easier writing here on internet because you tend not to say the wring thing when writing it

    but in the real world i tend to say what comes into my head or inappropriate comments out loud (i know i have done it after, but at that moment in time, it just seems ok to say these things)

    carers have the tough part i think, we have no option but to deal with the brain injury, but carers see all the bad things and tend o be diplomatic when we mess up.

    but we need a kick up the arse too, so dont be afraid to say what is needed to be said, you have to be cruel to be kind,

    so i think you do need to be firm with him and tell him some home truths, we all need that otherwise we get so self absorbed in our own problems that we dont see what we do to those who love us

  • Very well said....!!! My children are my carers and believe me ,If they can do it anyone can...My sons have had to put me in my place many ,many times and sometimes if we are in the outside world people do the TUT TUT thing and look at me as if my kids are rude and unruly ..with a ' Are you really going to let them speak to you like that look',I do step over the line at times and I can be self absorbed but in the last five years one very big lesson we have learned is not to hold back say it like it is,.Honesty wins the day..sometime it ends up in a plate smashing session...but It really is better out than in.

  • How very difficult for you, your husband and your family. There is no easy solution and not much help for those looking after brain injury patients. (Ironic hey, patients you need lots of that, as you will well know)

    I'm continuing to recover from my brain injury and my husband is the supporter. If you think we can help in any way please let me know how I can send my email address/phone number (privateley) and we can have a chat. It's good to talk and share experiences and maybe help each other. I wish you well take care :)

  • It is so hard to carry on normally at work. My mum had a SAH a year ago and I took a week off but then had to go back and try to be myself. My dad then had a very severe SAH in August and it really was touch and go, again I had a week off then back to work as everyone says you need to get back to some sort of normality. But how can you when both your parents have a brain injury? Fortunately mum has made a pretty good recovery, she is able to drive but gets very tired easily and is unable to enjoy reading, crosswords etc as she did before. My dad is in unable to speak or walk and is on a stroke rehabilitation ward, getting very depressed. How can you ever get back to normal! I have carried on as normal at work as the novelty wears off quickly for others, but have been selected for redundancy more than likely due to the, what I consider small, time off. They have denied this but there are other people who are difficult to deal with and rude to customers who have kept their jobs! I really feel for you, how awful you lost your job and your husband has been disciplined, lets hope these people never have to deal with something like this. My best wishes to you and your family.

  • Hi, your mum must have had her SAH moreorless the same time as I had mine. Reading what you have said may have been what my children faced. I just wanted to say "thank you" from a mum to her precious children, we could not have done it without your love and support xx

  • I am sorry your family is having such a hard time. I'm not sure where in the country you are located but Headway UK helpline should be able to put you in touch with your local carers support group... They may not have all the answers (in fact I'd be amazed if they did) but they can provide a safe place for you to share your experiences with people who understand and will listen and share their experiences and information. Some of the most useful information around comes not from professional or statutory services but from those who walked this road before us.

    I wish you all the best in your journey, Try to be gentle with yourselves.

  • Dear 'abisupporter',

    What you describe concerning your care of your son must mirror my own late mother's experience with me. I was almost 17 in 1967 when my TBI occurred.; I became a total 'barsteward.' I was in your words, "angry and verbally aggressive, with memory and other cognitive difficulties and sexually disinhibited."

    My father had left when I was almost 14 leaving my dear Mum to deal with the aftermath of my accident. There was no rehab, no support worker(s) and no property for me. She was stuck with me at home.

    How, I have no idea, she saw it through and in later life ~34 years after the event I saw fit to thank her for all she had done, and indeed given up for me.

    I did settle down; I stopped being stroppy and managed to control other urges too. It all takes time. I stopped being stroppy some ten years after my accident; the stuttering for words stopped perhaps 15 years after. Now 45 years on my memory is better. I am prone to the odd rant but not in the same vein of nastiness as before.

    I can't offer any advice to allay both your situations but be aware of what you can influence and what you can't. If you have access to social services see if you can get some assistance for yourselves, at least in the short term, so that your lives return to some normality and don't forget, Headway may also be able to advise you.

    I do hope that you can see this through.

  • i have been through the same stage mine started in 1999 and after 7 years it became impossible as he was involved with a drug addict prostitute but over the years its got better he still gets angry but is living in his own home does his own shopping i have him for 70 hours a week and have him working on motorcycles etc to keep him busy and give him goals the ss are a total waste of time in fact they supported his episode with the girl and tried to get them married as he owns his own home the consequences would have been dire.

    have you considered hbot it worked for martin

  • I understand totally, I was just such a son. I still have anger within me and have been helped to better understand the full picture with Cognitive Behaviour treatment. I went through lots of stages and lived on the streets for a short while as I didn't want to burden my parents or anyone. I have been extremely lucky and am now married with beautiful children and an understanding wife who knows the frustration has a knock on effect to myself and the pain and headaches. We also got no public services assistance and even my ex-serviceman support didn't help the family at all. This is of no help to your problems of course and the knock on effects they have on the rest of the family but know that at the very lest our best wishes are out to you all. There are devices that can help for example we have a cooker that senses when it's lit and if it's cooking anything to prevent accidental spillages burns and fire. taps that can only dispense water when hand pressure is on the tap, to prevent flooding the home but I know any device doesn't cover the amount of support that others give.

    To your son I know how you feel from day to day the fear, the anger and regrets don't let it all build up within you to much and do ask for help from Headway or even friends around you. I lost my mum and it's only now I can spot all my family did for me. Don't give up hope and find a channel that will help you, I am lucky as I found work out there and love singing (even if I can't remember lyrics I can make my own up). Don't give up on your dreams as without them you become a statue failure is only something that exists when you give up...

  • I hope you dont mind me popping in, I joined this site a few weeks ago, as some of you know I joined because I help out in a small way in my local Headway charity shop and I wanted to find out a little more about Headway and the people that they help, I have met some really friendly people on here and what strikes me most is the straight no john bull talking, the honesty and the care and support for each other. I cannot begin to understand what it must be like for you the sufferers or the carers and I will not pretend that I do but I do agree with what I forget says, some of the best information and advice comes from those who have been there. I feel for you and your husband and I am wondering if like some other organisations Headway offers some kind of respite for carers while also giving help to the sufferers. A small break now and again for you to recharge your batteries. I hope I have not over stepped the mark here. I wish you all the best.

  • gaymon wanna do more mate local headway groups are always looking for volunteers. once a month.......look up your local group or someone in the shop may know

  • Dear All

    Thank you for your thoughts, advice and support. I know that we have to deal with this as a family but sometimes it becomes too much. Your support has been great. Have a good Christmas and New year.

  • Our daughter was the same age, and had an accident in July, wonderful talented graduate, and had very similar experiences to you. The family is left trying to cope with the seemingly uncopable! But we have to move forward, and not backward - if we support each other we might just be able to make it - remember you are not alone out there, there are others on the same ocean - and sometimes the waves get the better of you - I really do hope you feel that there is some support out there, and will think of you both. Take care.

  • I feel for you and reading all the comments makes me sad, we are at the very start of my brothers recovery and it hurts so much, my parents are living and i see their pain, life is hard as normal life continues and doesnt stop - but the loss of my brother and waiting to see his outcome just gets harder x i feel comfort from you and feel your pain and wish there was something i could do - my thoughts are with you x

  • My parents had the same problem. Suggest your other kids go onto this site to begin to understand that this is a wide ranging problem for society. I repaired myself through Smile and Laughter therapy by watching any comedy shows to release natural Endorphins. The health service will not be your answer they are still not set up to cope with head injury nor is the medical or health service. The best way forward is to visit Headway Good Luck and seriously start praying it worked for my family

  • abisupporter i doubt hes too chuffed about it either!!!

    i speak as one who is aggressive has mood swings sexually inapropriate inside and outside the home and despise people who say they understand when they havent got a clue, because they arent going through what we are going through.

    advice and i suggest you take it, join your local headway group and meat wives and partners who put up with this and listen to their coping strtategies.

    my wife just tells me im being inapropriate

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