Living with someone with a BI

Hi All, I'm sorry to post such a negative post but I need to get this off my chest and feel like no-one else understands. My husband had a traumatic brain injury in June 2013. at first we were just so glad he was doing so well that everything else seemed insignificant but over the years the effect the BI has had on him has become more apparent. He lost his job in oct 2015 & shortly afterwards we found out I was pregnant. He hasn't found work since as he has been planning to start his own business which I was fully supportive off. Luckily my wage was enough to cover bills etc and he had some savings which he has now used to buy equipment for the business but he just can't seem to get started. My issue is that since I had my son I feel differently about our life and things that I thought I could live with before I just don't want to now. Having a baby has changed me as a person and it's making me so sad. I have tried so hard to support my husband and I know motivation is a big thing for him & its not laziness but I feel like I am at the end of my tether with it all. I am having to go back to work early as we need the money but I just don't think he realises how much of a big deal it is for me. He has been working with a mentor through the job centre to try and get the business started but he's now got a deadline of 10th of April & he's doing nothing to try and meet it, it's like he has no concept of time he leaves everything to the last minute. I feel like he has spoiled a lot of my maternity leave as things have been so stressful and he is just always there I get no time to myself. I keep telling myself things will be better once he is working again but then I'm actually really considering whether this is the end of the road for us. That makes me really sad and I know he really needs my support but I just feel I can't do it anymore. I know people are going to tell me to go to headway but my husband is so stubborn he definitely wouldn't go he doesn't accept help from anyone. Sorry for the long rambling post that's only a fraction of what's going through my mind right now 😢

20 Replies

oldestnewest
  • Hi yes living with B.I partner is hard, yes you feel alone! Yes they can be needy (like kids) My hubby is back at work and has just had more suergy so is at home reacovering, Do give Headway a call. They support the whole family and offer a wide range of services. Being a new mum is hard enough without the extra stress you have!

  • You know living with a BI needs counselling, and I would say for you both.

    Your husbands life has changed phenomenally too, he will be dealing with a raft of changes to his body, personality and the way he now has to live his life.

    I thought I could manage without counselling but I had to admit it was necessary, not least o understand my anger and frustration. I have the BI in our family, and I have been unable to work since, I am now retired, but my husband would never admit to needing help coping with me and our new life so I have had to do it for both of us.

    It may be that your relationship will not survive many don't because life changes so much and it is not what either partner signed up for, but you do need to talk with someone, perhaps your husband will agree when he knows how difficult this is for you or just how serious the situation has become.

    Good luck

    Janet

  • You need some help NOW. Firstly see your doctor and see if he can give you something for some temporary relief. Ask him if he can arrange urgent counselling for you - if not, see if Headway can. You need someone independent to talk this through with.

    Mark (I seem to remember his name is Mark), is probably not being deliberately difficult. Maybe he is worried about starting on his own and is trying to put it off in case he fails. People with bi's find it hard to get motivated anyway.

    Try to get some help for yourself first, then you can start thinking about your future.

    Lots of luck

  • It sounds like you're having a really rough time, and I couldn't agree more with what the others have said: you need some help with your feelings, and you need it now. There's no way I could have got through my wife's BI (still getting through) without the help of therapy, it's been a lifeline for me. But I also recommend making use of Headway - as the others said they're there for the whole family, and they have lots of experience they can bring to the table. I know what it's like to feel alone with this, and it's excruciating. Wishing you all the very best.

  • Sadly folks with Brain Injuries can be hard work to live with, how self aware is he of his problems? I can be a right so and so but slowly am getting there

  • Hi gosh you have coped with so much. Firstly welcome you will find so much support here we all help each other. Reading your post I can see you have carried so much on your shoulders. Just handling all the symptoms of someone with a brain injury can be overwhelming. But you have been the one holding the household together, bringing in the money and organising things. To top it all you've coped with pregnancy, and probably what should have been a special enjoyable time has had so much pressure loaded on top of it.

    Your change in feelings I would say is natural, you have had a baby and your priority is their welfare, and you will have a strong bond with them. I wouldn't beat yourself up, it isn't easy to cope with it all.

    When you live and are a support mechanism for someone with a bi, its a natural reaction to have anger, frustration and doubt whether you actually want to carry on in the relationship. That question is something only you can answer. But there is so much support out there, not just him but for you. You've taken the first step by coming on here and writing your post. My partner has a bi and I have gone through all those emotions, and still do. He was in denial for six years, it was only when he physically saw what his behaviour was doing to me that he opened his mind to getting help. Its easy to forget because my partner struggles with communication and maybe your partner does to. That they're trapped, can feel depressed, confused and also grieve for the person they use to be. Unfortunately we can't drag them to see the dr, they've got to come to that conclusion themselves.

    But for you because you have a baby you have to take care of yourself. It can help you by talking to us, maybe a local support group. I hope anything I have said has been some help. I wish I could make it all better for you x

  • Thank you all for taking the time to reply. I definitely need to get myself some counselling I realised that more once I'd written this post as there's so much more I could have said that is all bottled up. We have both been to GP and are on waiting list for counselling but It is a long list. I will see what I can do otherwise to get some help for myself. It's probably just because we have been in each other's pockets for the last 9 months but I just feel suffocated. I find the relationship controlling but just by how stubborn his brain injury has made him - everything is his way or no way. I do talk to him often but I have to pick my moments because he can either listen to me or shut down and it makes his mood even lower. I do think things will be a bit better if he can get working again and get his confidence back but will have to see if he can actually get started. He used to be so hard working even after his bi but the longer he is out of work the harder it is getting. He is just so stubborn he has lots of supportive family and friends but he doesn't want to accept help which really frustrates me. I do totally understand none of this is easy on him either he feels bad because he's not earning and he struggles with his low mood etc but he is the only person that can help himself now. I feel better even writing these posts so thank you all for replying and listening. I will definitely get myself some help then see how things are after that x

  • Thank you for taking the time to reply it does help to know I am not the only one although that's how it feels! I hope things get better for you too. Take it easy xx

  • Hi Rose, Jules here

    I lost my full time job and work from home very part time now.

    I misbehaved very badly in the early days and he did leave me.

    I know that i will loose my part time job soon (just cant do what i am being asked), and keep trying to start working from home for myself. Its in my blood to want to work. Cant imagine not.

    Like your husband, i keep trying to move on with it, but so far havent.

    I made the mistake of announcing to people in my family that 'it will be ok as i am going to work for myself'. It was a mistake as now they ask me how its going and i feel ashamed i havent done anything about it physically.

    In my head is a different matter - i mull it over and null it over.

    I rally couldnt tell you why it happens, I just cant get started. I know i have some good ideas as i can tell by peoples reactions when i talk - but still i cant get started.

    I worry that people might think i am lazy, i'm not. But i wish i had kept it to myself - maybe its pressure thats stopping me. Wish i could tell you.

    I think its brilliant that he is at least thinking along the lines of working for himself - but understand the void mean while - especially with a baby - must be very scary and sometimes unbearable.

    My new partner had some counselling earlier on, he didnt talk about it much, but it did seem to help him.

    Probably no help at all to you, but wrote it in case it was.

    Hope you get things sorted.

    Kindest regards

    Jules

    x

  • Thank you for your reply jules it does help to see it from the other side. I think that is also what my husband is struggling with as everyone is waiting on him getting started. I will have another chat to him and see how he is feeling about it all. I hope you will be able to work for yourself in your own time. Take care x

  • Helps me to see from the other side too. My hubby is almost 1 yr post SAH and much of his time is spent sitting. He can't seem to get started on anything either, even when we agree an activity, identify the goal and write down all the steps needed to get it done (and where the tea breaks are). So frustrating. I've lost my partner in life, my rock, my confidante and have gained an immovable teen!

  • It's so hard when you feel that way too. I see a lot of the person my husband used to be but there are a lot of changes which I thought I could live with but after I had my son I'm finding it so hard. I hope things will get better for you - the recovery is a very long one in fact I'm not sure it ever really stops but hopefully your husband will get more motivated in time. Take care, L

  • First, I'd like to say I'm so sorry you and your family is going through all this with a new addition that should make your world beautiful and full of lovely memories and not so much stress and hardship. This was my biggest hurdle to get over was I'd forget time and I has severe time conception problems after my accident caused me two TBIs. I suffered two auto accidents back to back. I would forget why I was doing what I was doing and or how I got where I was at. It was horrible at only 30 years old. I've also survived a tumor in my head and a skull fracture at 17. My life has been bumpy and trying at times. I write a to do list everyday and a weekly outline to and stick to it and this began to improve my memory. I set timers and reminders. When you have a BI your mind spaces out and can't gain a set thought pattern. Cognitive therapy really helps overcome this. He really needs neuropsychological testing and cognitive rehab to be able to function in a new job role. The worse thing to do is to start something completely new and unfamiliar after a head injury that the brain did not do before the injury. He's going to have to get some type of cognitive help or he'll never get over the hurdles. Hang in there for you can do this!

  • Thanks for this reply it was very helpful. I have honestly tried so hard to get him to get help and have told him perhaps this is too much pressure but he keeps saying it's what he wants to do but then can't actually get organised. We don't really need the money so to speak as my wage is decent but he is so unhappy being in the house all day he needs the routine so even if he could get a part time job that would help him. I will speak to him again about getting some professional help. Thanks again. Take care x

  • A part- time job would be the best to start with. I am single and work in the insurance and risk management legal field and I have the task of knowing thousands of laws off the top of my head. I have to work full- time and I couldn't even get awarded my Social Security that I had paid into for years. I am a devout Christian and I am a scientifically unexplainable living miracle. I shouldn't be here, but God makes the impossible possible. Without faith and without a hope in something we can not achieve as humans. You loose hope you loose your fight.

    I landed my dream job at the beginning of this year that I'd wanted since the start of my career and I did it as a brain injury survivor! I'm making more money than I ever have in my life and I'm on my way to management. My brain is getting in it's groove as well. I'm making it and your family will too! I also take vitamins and know that the B- complex vitamins help heal the brain and their is a product available on the internet and in select pharmacies call Folinic Plus that targets neurological and brain tissue injuries to naturally stop the inflammation and correct the misfires that occur after injury and illness. Try some of this for it's a top recommended natural treatment by neurologist. I increased my vitamin C as well and this has greatly helped. I'm like a new person. Walk for exercise at least 30 minutes every day because the stimulates neuron re growth and rejuvenation in the human brain. Inactivity kills and progresses conditions especially in the brain. Crosswords are good brain exercises and trivia games. This stuff works and is relatively cheap, but the rewards to the brain and quality of life are priceless.

    I feel both of your pain. I'm so glad you're blessed with a good wage and aren't facing loosing your home or etc. I found all to often that lack of medical and financial resources including vocational rehab specialist in society available to aid BI sufferers to return to work. This is another thing he could try is a vocational specialist and not just a career center coach. Vocational specialist understand the exact medical, physical, and emotional challenges between the injury and the barriers to meaningful work. They can empower him to become independent and feel like more of the man of the house even though being sick and having a BI and surviving made him man enough already! Men can not accept not being able to provide for themselves and their families. He has these feelings on top of the battle with his brain obstacles. My hats off to you for being so brave, strong, and supportive! You can make it through this as a family!

    Take Care,

    Kim

  • I'm sorry to hear about this. The headway booklets are very helpful and you can download them on the portal. There is one for caring for someone with a brain injury. My mum changed after her injury and has PCS. She is improving but it takes time.

    If someone has a frontal lobe injury, it can interfere with the ability to process tasks. This might be hindering your husband from putting plans into action.

    As I've said in other places in the forum, you can try a new approach to diet using Tina M Sullivan's great book, Nourish Your Noggin. Available via amazon. She advises on herbs, drinks and other recipes. To get started, try avocado, eggs and cooking in organic coconut oil. Spices such as tumeric, ginger, cumin, black pepper and cinnamon. Thai curries fit the bill nicely.

    Take care and hope things improve soon

    xxx

  • There is something you could try: Send him an e-mail or text telling him what you have told us. How you love him and want to support him but how worried you are that he is not coping with this new business. Make sure he reads it when he has time to think it through. Maybe seeing it written down he will understand better than never ending conversations that go round in circles. It's worth a try whilst you are waiting for the counselling.

  • Hello, I'm sorry to say I can't give you any more advice than already has been said. I just wanted to say that your post has given me a good insight to what could happen to my marriage if I'm not careful. You see, I was the one in our marriage that suffered from the tbi and i have just come home after 6 month's in hospital. I know it's hard for the whole family and not just me, hopefully my thinking will stay that way.

    I sincerely hope everything works out for you and your family. Thank you for sharing your experience, it's certainly opened my eyes.

    All the best

    Neil

  • Thanks for replying Neil. You are already half way there if you can recognise the impact it is having on not only you. My husband has never really had that insight. All the best for your recover. Take care x

  • Hi Dougie, Jules here.

    Just wanted to say hello there.

    Knowing your just home from hospital brings back some memories for me - as it will others here.

    I guess i just wanted to send you a friendly 'hello' really.

    Jules

    x

You may also like...