How do I get through this

I feel like I am crying all the time. I hate it. I wish I can be stronger. My husband has been in brain injury rehab since early Sept. Hypoxia brain injury due to heart attack deprived of oxygen. Memory has got a bit better in some ways at least remembering what he ate in the morning but still saying a lot of things that he believes to be true when it's not true. It's hard to convince him otherwise. He started to be more stable in his walking about 3 weeks ago but yesterday he was back on the wheelchair again. They took off his meds - Keppra which was helping him with the shakes/ataxia so now he is shaking again so not safe without the wheelchair. Reason why they stopped it is because his personality got worst (side effects) - angry, wanting to sleep most of the time, stopped engaging/doing his sessions, thinking he is completely well, saying he doesn't have a brain injury & they are keeping him there for no reason. Criticises on anything when he has the chance, sarcastic, very challenging, he even said there's no such thing as OT, Physiotherapist etc, he doesn't believe they are professionals and he is just wasting his time with them. Things weren't so bad about 3 weeks ago and then his behaviour got worst. He won't listen. He keeps insisting his Dr said he is well enough and can leave and all these people don't know what they are doing. The Dr he refers to was someone he used to work with at a hospital but she has retired awhile ago so that is a make belief on his part. None of us can reason things with him now. It's so hard. When he knows I'm upset he will apologise and he will say something like "ok....I know I need to do my sessions, I will, I will try harder" but next day the same thing will happen again that he has skipped all his sessions". Sigh. Don't know what to say really. Just losing hope.

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  • yeah its tough my hubby had a bad reacction to the steoirds they put him on after his op,steroid physcois apparently! luckily now he is fine and back to himself.Try to stay posative i know its hard.Youre hubby will pull himself out of it eventully! honest big hugs and happy thoughts xxx

  • Oh dear how hard it sounds I have no wisdom or advice. I hope you are getting support. Sending a cyber hug xx

  • It is a long journey and such a difficult one which many of us have either experienced ourselves or like you are living it as a wife. How about ringing the Headway Helpline they are always there for you and are great listeners for you to off load. They are used to people getting emotional, upset and crying and don't mind at all. Sometimes a voice is more helpful than the written word on here.

  • Yoda-

    The fact that you're feeling it, whilst incredibly distressing for you, shows that you care. My brain injury, in February of this year, was due to a ruptured aneurysm, and I can empathise wholeheartedly with the 'making things up'- my theory was that my brain had bits of time 'missing', when I was anaesthetised, or sedated, and had 'filled the gaps', some of the gap-filling was plausible, some of it was utter nonsense. The weirdest thing is that I still have some of the 'memories' that I know can't actually have happened.

    'Confabulation' is the term for it, apparently, and it settled my mind to know that, depending on the area of the brain, and depending on the person, it's not unheard of, and doesn't mean I was 'going mad'. My son found it heartbreaking, my husband just told me I was 'being stupid', and 'talking rubbish.' You're an entirely different spouse to mine. My husband, who, in reality hadn't really been my husband for a while, and isn't likely to be my husband for much longer, has a very 'linear' approach to most things, and expected me to be 'better' as soon as he brought me back from the hospital. I'm not going to get his-better, there have been physical, structural changes in my brain, and they have left me with psychological changes. I have to leave the office about 75 times a day, because the woman who has the desk next to me SLURPS her tea, and eats with her mouth open, and it makes me irrationally angry- it did before, just not so much.

    For me, it's lucky that I've worked in mentoring/counselling/re-focussing adolescents for nearly 15 years. Through training them, I've been able to re-train me, and, although I do go through periods of being deeply despondent about the 'change' in me, the 'lack' in me, that's for me to deal with, I don't project-out.

    For you, you need support, and Headway might well be the best place to start, they're used to varying degrees of all of this. Asking for help for you is not an admission, or a failure, it's a strengthening process, enabling you to deal with what you have now, and what you will have in the future.

    For him, obviously the physical side of things does need addressing, but Headway ought to be able to point you in the direction of area-specific emotional support, as well. I'm the worst kind of hypocrite for saying that, but my background, my history, and my 'me' mean that I always want to try to sort myself out first, before I ask for help. I remember the angry-zombie phase very well, and I know I didn't make up sending the husband out for the shop for particular food, or drinks, that I didn't really want, just to get him out of the way, because I knew I was about to 'blow' over nothing. There are two enormous cans of rice pudding in my kitchen cupboard, I don't like rice pudding, but sent him to the shop more than once for it, because I knew I was about to metaphorically take his head off over nothing. The water he brought me to take my painkillers with would be "too cold, it hurts my teeth" or "tastes like it has been standing on the window-ledge", I was utterly horrible, and I know it, that's the part of me that can't stand to be 'looked after', combined with the pain and that fatigue that is perfectly natural after emergency brain surgery.

    We got to the point where he was telling people that he was going to give me my 3am medication with a catapult, because I was so insufferably horrible when he woke me up to take them. (The easiest solution would have been for him to let me set my own mobile phone alarm, and take them myself, instead of assuming 'control'- grrr!) Now, we're two separate adults living in the same house, same as we were before, but now I have a cracking scar on my scalp.

    Long, waffly post, Yoda, I apologise- there is support out there, I'd say approach Headway, for support for you, and they'll guide you towards support for him. The kids I work with don't get it, but one of my go-to phrases is "You can't pour from an empty vessel." Build yourself back up, my love, because pouring all of your everything into him, when he's not receptive, is very, very draining, and leaves you little reserve to look after yourself.

  • Hi Yoda,

    My heart goes out to you as this must be absolutely tiresome and distressing for you. I completely agree with Gaia above and the advice given is bang on. If you can get to your local Headway centre who will help you as you need help too in many ways with whats going on here, give them a call.

    If you can try and keep optimistic and positive as the hole situation will bring you down if you let it and make you feel awful. The help on this Forum is fantastic and remember your not alone. Try and have a peaceful Saturday and God Bless. XX N

  • Yoda

    There is so much about brain injury that is unknown and there is no easy answer.

    I'm sure that many of us will recognise the denial your hubby is experiencing. For me I would not entertain the idea of doctors but would do anything for my OT or physiotherapist except when it was some aspect I was still in denial about.

    Please contact Headway.

    We are here for you any time you want to chat or vent.

    Lovenhugs

    Xoxo

  • First I am so sorry you're having to go through this. It must be extremely overwhelming and upsetting for you. One big thing - get the support you need personally. As others have said Headway is a great resource. Then you will be better able to deal with the situation you are in. Just realize that much of what your husband says and acts out is the brain injury and not the real him. I know it is hard to separate it like that, but it may help you deal with it all better. When he apologizes, that is the real him. Short term memory really doesn't work very well, so what happens in the moment is easily forgotten in the next minute, hour, day etc. My wife deserves a meritorious service award and so much more for her patience and help she has given me and continues to help me. It's actually two years ago to the day that I sustained my brain injury. My method of dealing with this , when I can remember is to just deal with it one hour at a time. There have been some really great hours and plenty of hours of challenges too. I wish there were a better easier way to do this, I just haven't found it yet. Wishing you all the best for your lives going forward.

  • Hi,

    It sounds like you're going through hell.

    From your husbands side of things, I'm similar in behaviour but less extreme and I know I put my wife through hell too.

    It's so frustrating, you feel Normal one minute and the next you're furious about your own limitations, memory, confusion, pain etc and who gets it in the neck? The one person who loves you the most. What a terribly unfair situation.

    At times I feel that things would've been easier if my op had failed and I'd slipped away, then this dozy miserable b#####d wouldn't be harrasing my wife.

    He WILL know that you love him ( I know my wife loves me ). Don't take any of the crap he throws as a personal thing, it ISN'T, it's just a new way to express our feelings.

    You've proven that you're strong and that you still love him, as you're still with him.

    Take it from me, he loves you more than he can show or say and there's a little boy inside him that's frightened.

    Be strong, you CAN accomplish anything you want.

    Best wishes, a 42yr old slightly wrinkled, with thinning hair little boy.

  • Thanks, another bad day today. Can't make sense w him & I know its not his fault. Just feel that I can't seem to help him. It's not going anywhere & feel like he's never coming home. I love him to bits & I know he does love me but he can't see it that he needs to help people or professional to help him. Sigh.

  • Thanks everyone for all your kind words & advise. It doesn't seem to get easier but I will try to be more patient. Yes probably need some "me time" so that I'm not so frustrated.

  • I really think you should look into getting therapy sessions for you and your husband. It's a great way of understanding things and making everything positive. I had therapy only 6 sessions and it stopped me crying all the time and helped gain my confidence back. Speak to your GP and ask....

  • Good morning can I tell you all of this sounds so normal, shocking I know but common after a BI. My husband thought he was in prison and what had he done wrong. He would have his bags packed everyday when I arrived at his rehab. He was put on Amantadine for Parkinson's which took a few weeks to kick in but was fantastic. Up to then he would not do sessions was walking length of corridor on Zimmer frame. He left there after six months walking without a stick. You have to just be loving and patient and do avoidance tactics at a faster pace. The staff will be so used to all of this stop feeling embarrassed. Life changes so much and we just have to change with it, don't give up I know you are worn out as all of this sucks you of any other life. You have to try and have some normality so try to do the odd thing that's not at the rehab unit like just going to cinema to see something funny, you can still laugh and should including in front of your husband.

    Take care of yourself too maybe have some counselling, I did and it does help.

    Livvy

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