Struggling

Hi all,

I'm new here but have spent a considerable amount of time reading the posts - it's reassuring that I'm not alone. I guess I just wanted to post to introduce me (32), my husband (29), and our current day to day struggles.

My husband had a serious accident back in January 2014, and along with some remaining physical difficulties (he broke his back so suffers from this too) - he also suffers from a brain injury. The hospital records suggest " large hemorrhagic contusions of the frontal lobes bilaterally and an occipital fracture". They said it was severe.

He has had all the relevent scans, and has seen a Neurologist, a Neuropsychiatrist, and a Neuropsychologist - both for initial visits in the first year after the accident, and follow ups now 3/12 years on. What has become clear is that he is getting worse.

I work full time, and so does my husband at the moment, but as soon as he gets home he's totally wiped out. I do everything around the house, all the shopping, cooking, cleaning etc. I deal with all the finances, plan any holidays, sort out cars etc. It's pretty draining.

What worries me is that there is no light, he's always tired, irritable, snappy. He gets ideas in his head and obsesses over them, I've had to take away access to his bank account as he impulse spends large amounts of money - but then I feel guilty that I'm controlling him. He can't make decisions about anything and ends up getting himself so worked up he locks himself in the bathroom in tears, he says he can't control what his head does. Sometimes all I want to do is get into bed on my own with a glass of wine and forget about everything, about how much he's changed, but that's not helping anyone as the glass soon turns into more - and its not me with the brain injury is it he's suffering more than I am.

Anyway, that's us. We're both still here, still trying, still struggling.

xx

30 Replies

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  • Hi Mrs Casper and welcome.

    Hopefully this website will help you both.

    I'm amazed your husband is working full time. Many of us are not able to return to work at all. He must be exhausted as I am sure you are too.

    My ability to handle money at first was abysmal and I have run up huge debts that will take me about 5 years to clear as I am now drawing my pension, but I have re learned how to budget again.

    I am sorry you carry the whole burden of runnng the household, my husband now has to do the lions share of the chores. I am improving and finding I can do more these days. I am 5+years post BI and expect to have to live with the consequences for the rest of my life, but I strive to improve which I am doing.

    Please contact the Headway helpline for guidance with all things BI related and come back to us here we have a wealth of experiences to share.

    Take care

    Janet x

  • Thanks Janet for your reply.

    His prognosis for continuing to work isn't fantastic (mainly due to his back injury as they have said he could be in a wheelchair in 3-5 years), so he's just keeping going I think for as long as he can. Not a great message to be told.

    He ran up some debts, I've cleared them back down and I think as he knows this he's not actually worried too much by me dealing with it all now - I'm hoping he too can learn to budget again in time.

    I find it really difficult to talk to anyone... this post was a huge step for me. In time I will contact the Headway helpline - just trying to get my head around things still at the moment. I never ask anyone for help, I'm always the strong one that gets her head down as supports everyone else.

    x

  • Hi again, I too thought I could manage without counselling but I finally admitted to myself that perhaps I should do it, so I did and it helped such a lot. I think we all probably suffer from PTSD, learning to live with a brain injury is so stressful as Pax says, for the whole family.

    We all learn to deal with it in our own way.

    You've taken the first step now so hopefully you can push on forwards now.

    Accepting the new person after the BI is crucial, and seeing the funny side of the scrapes and situations you get into is a must too. Remember neither of you wanted this to happen but working together on your new future will help so much.

    Janetx

  • Hi Mrs Caster.

    Welcome and I hope you find the answers and support you need from this sitemplate.

    As a bi survivor the first thing I would say is you have gto one thing wrong. That is it is effecting BOTH of you equally.

    Yes he has the bi but you both are living with its effects.

    As an insight into your husband bi he probably is still coming to terms with how he has altered and what he can no longer do. Being aware of this may not make it easier for him.

    This leads to frustration on top of the bi and can compound any problems he has.

    Has he had counselling to adjust to the new person he has become...In fact have you received counselling?

    It is easy to say it gets better...But it does although it can seem to be getting worse.

    The important thing is be honest with each other and keep talking. Yes he may forget and this will bother him ( trust me). Seek help...Any help. Headway is a good start and don't keep anything hidden.

    Maybe it's time to adapt and not just cope with the situation. This may include how he works. Allow for true rest breaks...fatigue make things worse than they ate so don't fight it.

    Let him take on a little reponsibility no matter how trivial .. Oh and be prepared for him failing ..But let him keep trying. That little victory of taking over any small job is such a lift.

    As for money he probably knows he has problems but knows he can't help it. Hey treat him like a royal ...He doesn't carry money ...works for me.

    Yes I know I should understand money but I have major problems in budieting. I know this and if the answer is to remove my access then if that's what has to happen then let it happen. Theres more important things for me to concentrate on.

    So my best advice ...Keep talking and remember to see the funny side when things go wrong. Oh and a bi effects the WHOLE FAMILY.

    All the best

    Pax

  • Oh and p.s. Sorry for long post.

    Pax

  • Thanks Pax for your reply.

    Neither of us have had counselling... we both find it hard to talk about the new 'him' and our new lives as a result. I think we are both guilty of trying to carry on as it was before even though we know deep down we can't.

    Can you suggest any sort of responsibility that might help things? I don't mind if he fails, I'll be there to pick him back up.

    x

  • It's the hardest part letting go of what was and accepting what is. Try your local Headway about how to access counselling.

    As for a task it can be anything he may enjoy or a part of tending to he home. RememberIng to allow time to rest. Also remind him that whate er task he takes over is one less for you and that it will take him longer but it's ok.

    It could be keeping one room tidy or putting in the laundry. Anything he did before bi. It's not to compare how he has changed but to prove he can still do it...All be it maybe slower or in a different manner.

    I never managed to return to work but mange various voluntary work. Also I try...And I will say try ..To keep the house tidy and other household chores. Yes I do forget to do them when I say I will. Yes they do take 4 times as long but it s my imputation into the house.

    Remember there is life after a bi it's just possibly a different one.

    Pax

  • Thanks again.

    The additional difficulty we have is his back injury, whereas before he could mow the lawn - its now too painful. Where he could bend down to pick the laundry up - its now too painful. And with the prognosis of him being in a wheelchair in the next 3-5 years as his back further deteroriates I can't see anything getting better... ever. And him being told that aswell must be so crushing.

    I find his BI difficult because some of the time he's ok, he'll sit down and scroll through auto trader dreaming of nice cars like he always has, but the next minute he's obsessed with buying one and it doesn't matter whether we lose the house that will be what he focuses on to the point of tears. I don't know whether to stop him looking in the first place, stop him when he starts obsessing, or to just leave him be.

    I asked him to put a picture up on the wall a few weeks ago, I put it next to the TV so he would see it every night as a reminder. It took 3 weeks to go up. The woman in me just thinks 'typical man' (sorry guys no offence at all intended!), but the other side of me knows he can't help it and I really don't know how to help him through that sometimes.

    x

  • Yep the man thing doesn't help. Didnt break my back but tore muscles causing my back to twist . Was told I would be in a wheel chair by my 50'side. It sure looked probable but touch wood have stayed on my feet just.

    As for tasks try seeing what you can adapt. Can you find a cheap second hand ride on or self powered lawn mower. Not a patch on a car but it's got an engine.

    It may take a while to find a suitable task but keep at it .

    Pax

  • mrs casper im on meds for my aggession, i hate crowds and noise to name a few and become tired very easily.

    it is suggested, if a person has a bi and works in the morning one day, he then does nothing until the afternoon the following day and so forth, it sounds to me as if your husband is overstretching himself which is causing his fatigue and leading to his aggression.

  • Thanks. He's not aggressive at all which is a good thing.

    An interesting point though about working hours, I do think his fatigue contributes hugely to our difficulties, I'm just not sure his employer would accept reduced working hours :(

  • mrs casper hes snappy he cant control it, neither can i, although the medication keeps it under control so im not as bad as i was.

    one of the side effects of a bi is fatigue, i dont know what he does for work but hes overstretched and unfortunately because you dont have a bi you dont understand.

    i wouldnt wish a bi on anyone

  • There is a difference between being snappy and aggressive. He's not aggressive.

    No I don't have a brain injury and I don't fully understand, but this site is for carers too and I'm only here because I'm trying to get help - just like you.

  • mrs casper i have a bi

  • I know.

    We are both here for help in different ways.

  • Contact Headway. I think you'll be pleasantly surprised how much help they can be to both of you.

  • I've not even been able to bring myself to read these replies until today... talking is hard! I am trying to work myself towards contacting them though thankyou.

  • Fantastic words pax.

  • Mrs Caspar your post really chimed with me... It was me who had the TBI in 1989 and my husband who has borne the brunt of it since; I too recovered sufficiently to return to work FT for a few years but then got so tired, developed Sjogren's and had to give it up, got depressed and got into debt - and I lost it rather when my DH invited a burly bailiff in by mistake (my children still remember that!).

    Some very good points here so I would only add two pragmatic things to consider maybe? First that it took them a decade to diagnose the cause of my incredible fatigue - basically brain damage led to Central Alveolar Hypoventilation - my brain simply didn't trigger me to breath often enough and if I was sitting alone at my computer/desk or driving (ie not talking!) my blood oxygen would fall and my brain would say SLEEP - not yawn or feel breathless. And when asleep it would fall below 90% and I now have memory problems and permanent damage. Anyway a new GP listened and referred me to a Respiratory Consultant who sent me home with a little wrist oximeter with a finger-stall. Bob's your uncle and I had the Oxygen Service installing an oxygen machine and all the tubes and small cylinders to take when I go out. they also reimburse the cost of the electricity which we really need! My neurologists did very expensive MRI scans which showed nothing remarkable, er, that was it! It might not be CAH of course but it is well worth ruling out.

    The second suggestion is to go on anti-depressants - SSRI pills. I was reluctant and waited years - it was only when my mother died suddenly aged 71 and my family promptly dumped me and mine - not even sending birthday cards to their nephew & niece since - that I 'bit the bullet'. They are not a solution of course - I see them rather as an essential emotional 'cushion' (life-jacket?- which, at the right dose, protect you from the torrent of despair and give space to live and breath. Too high a dose though and I find that I become cold and uncaring - not nice at all! My GP is great and I have a pill-cutter and tweak my dose by half a pill either way when I expect things will be challenging. It is actually empowering to realise how these feelings are controllable and can be banished. After all we have enough on our plates don't we????

    I'll stop there. But do use this forum as there are quite a few of us around and who can understand. Take care.

  • Thanks for your message and sorry it's took me a while to reply. After I posted I couldn't actually believe I had pressed the 'submit' button so went away for a few days.

    I'm sorry to hear they look so long to diagnose your problem, but glad they eventually have.

    Anti depressants... there's so many horror stories about addiction it scares me. I have done some research though an am starting to take 5-HTP. A natural form I'm told. I don't want to go to the doctors and neither does my husband - stubborn I know lol.

    My life has had its fair share of ups and downs. My ex of 10 years used to hold up knives to my throat and throw things at my face and injure me, he never worked and just drank and did drugs and we almost lost our house, my Dad was an alcoholic and I lost him when I was 18, I lost my grandma and grandad a few years later, my other grandad needed open heart surgery, my husband has a witch of an ex who makes our lives difficult to see his son, and now my husband also has lasting damage from an accident that wasn't his fault. Phew.

    I dunno I feel like everyone has problems though and everyone else gets through them don't they? Do I need pills to cope? Can I keep going without them? (Hypothetical questions)

  • I don't have an advice, but maybe it makes you feel better to know you are not alone? My husband also had a BI (6+ years ago) and is getting easily aggravated.

    His mood changes so suddenly that when I come home from work after picked up our daughter from preschool he's all happy and chatty, then goes upstairs and like 1 hour later he comes down starts shouting at her, because he wants to make a sandwich and she's there "bothering him". When in fact all the kid did was play with a ball, turned her back to him.

    Obsessing over things happens all the time too.

    One day he is building a PC (he used to love that), buying all sorts of parts from Ebay, watching videos on youtube about etc. Then few days later he'd be obsessing with homeless people, watching 100s of documentaries about it and so on.

    I do hope you can reconnect with your partner again and things return back to normal, as much as they can be ofcourse.

  • Thankyou for taking the time to reply. Your username saddens me :( Nobody should feel lonely (although I do too which I think makes me even sadder for you!)

    It does make me feel better that I'm not alone thankyou. It's so hard though isn't it knowing you can't help them? I can't imagine how difficult it is trying to explain to your daughter aswell.

    We are still close, I think he doesn't realise how much I'm affected to be honest. I'm the strong one that stays there and keeps going no matter what...

  • Its great that you are still close. I think it's rare from what I've read and watched on TV.

    Don't be sad for me life is what it is and we all get through it one way or another. Even though I do feel a bit lonely at the moment it is not why my username is called that. It's just a nickname I've had since I was a teenager.

    It is hard indeed knowing I can do next to nothing to help him. As for our daughter, she is still very young only 3 so we haven't explained anything to her yet.

  • Hi Mrs Casper looks like you've had a lot of great advice. From my own experience of bi I would say what your husband is experiencing is fairly typical of someone with a bi but under pressure although I admit I never had issues with spending /controlling money . Like a few others have said I'm also amazed he's back at work full time. I'm 2 years post bi and working 3 days a week and can't forsee that increasing anytime soon.

    Would it be possible for him to go part time at work? The symptoms you describe sound like severe fatigue to me which manifests in all sorts of ways but it can be managed.

    Wishing you both all the best and hoping you find a way through this.

    Rachel x

  • Thanks Rachel. From what I'm reading I do totally agree with your comments - it's a miracle he's working full time, especially in a physical job with his back injury too - but the fatigue is immense and could certainly be making things worse.

    I don't think in his job he could go part time unfortunately, which would mean finding something else. That though would put him under so much stress and pressure that I don't know whether that's the right thing to do either :( Catch 22.

    Thanks for taking the time to reply xx

  • Morning Mrs Casper,

    As others have said you have taken the first step by coming on here and talking to others. It really helps. I had a similar accident back in 2015 which resulted in 3 frontal lobe contusions and the loss of the old Nick. Its frustrating and a real tough one for him but also tough for you as it was for my wife. What really helped me and helped me to accept the new me was coming on here and talking to like minded sufferers then for me Headway counciling was wonderful and my councillor was and still is fantastic. I can say enough how positive counciling is. You and your husband will have to accept what has happened and I know thats easier said than done and it takes time. Going back to work for me was too soon but I got through it and made a few mistakes and learnt from them. Your husband needs to take it easy and take one day at a time.

    Well done for getting on here and it may be a good idea for your husband to come on here too.

    Have a positive day.

    Nick xx

  • Thanks Nick. It's taken me a few days to come back and read the replies... the day after I posted I just thought 'what have I done!' - and not in a good way!

    So sorry to hear about your accident, and I can genuinely say I feel for your wife too.

    I find it hard to talk as I'm always the strong independent woman that gets through everything without being phased, so this is a whole new experience for me. I even have a tattoo saying "she flies with her own wings"... asking for help isn't in my nature no matter how hard it gets.

    Counselling.... hmm... I just see visions of being sat on a couch with someone that thinks they know more than I do about myself. Telling me how I should feel and act. Totally get that is a blind sighted view and one I'm thinking I need to change after talking to all of you on here, but I'm not one for being politically correct hence saying it how it is (that is in no way meant to cause offence to anyone as I know lots find it valuable, that's the honestly in me and only my no doubt oblivious and incorrect view)

    xx

  • Ha ha ha I had the same view about talking to someone strange that knows nothing about me but its done wonders for me. Talking to someone who is trained in this sort of thing and yes it takes courage to do it but worth it in the end and what have you got to loose, I only had my sanity. Hope you have a good evening.

  • Welcome to this forum, Mr Casper.

    He may not get all the way back to the way he used to be, but don't assume that he cannot recover any more. I had a brain injury in 2005. I was in hospital for 8 months, and was off work for 18 months. My husband told me early on that I shouldn't expect any improvement after the first year. He was wrong. :-) It has been much, much slower, of course, but it is still happening. I went back to work after 18 months, but I recently had a chat about it with some colleagues, and they agreed that I had improved an awful lot from the way I was, when I first started back.

    However, it has needed a lot of work - exercises, and concentration. He needs to have things that he is concentrating on. I must admit, I am not sure what ways he should do this. Maybe playing games of some sort, like Monopoly, would just get him making decisions, and you could talk about it.

    Anyway, welcome to the forum.

  • Thanks for your comment and sorry to hear about your brain injury. Great news though that you are improving!

    I'm not sure whether he actually has too much to concentrate on at the moment. Working full time in his job is tough. And we've had a lot of reports from professionals that aswell that confirm his fatigue. Difficult though as maybe that helps and keeps him going? He doesn't even know what goes on in his head though let alone me.

    I totally love the monopoly idea to get him to make decisions, what a creative suggestion and one I never would have thought of at all! Such a small thing but actually yes, that could support his thinking with us talking through what he decides to do - especially with money involved. We used to play it before his accident so I can gauge too the difference in him.

    Thankyou for your comments x

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