I feel like I'm drowning. I'm stuck in this circle of hell and don't know how to stop it. I'm husband was run over Sept 23 and suffered a severe tbi. We've been really lucky physically but mentally it's really hard. It's like all his redeeming features have gone and all his bad points amplified. We're having the same argument every day. He won't do anything to help himself. Threw away his smell test today as he's sick of me nagging him to do it. How he expects to get his smell and taste back without trying, i don't know. He's so frustrated with everything and I'm worn out mentally and emotionally. He won't listen to me with any ideas of how to help himself, getting a routine together, doing puzzles, trying something new, exercising. Just sits and moans and doesn't help around the house, won't cook or clean,
Drowning: I feel like I'm drowning. I'm stuck in... - Headway
Drowning
I'm sorry to hear this, there is little tougher. Remember though that your husbands brain isn't working properly. It's not working properly, like a faulty computer. Try not to blame him. Ring Headway for some help.
Hi TBI-wife,
Have you spoken to Headway or checked out these tips?
headway.org.uk/about-brain-...
headway.org.uk/about-brain-...
He sounds depressed, which many of us have gone through. Is he willing to talk to a psychologist that is experienced in brain injuries?
Coming to terms with the life-long impact of having a brain injury can be extremely hard. I know it was a big hurdle for me and I wanted to recover and return to normal. But life has taken a different path, and the sooner I accepted that the sooner I could be happier and manage life according to what I could do.
Are you able to get some additional help around the house while he is recovering?
Make sure to look after yourself and take some time out.
Hi TBI wife
This is a hard post to answer for me and I hope I get it right.
Is he still getting help? Headway was my first help. They understand, offer advice, help to find support etc. They also introduced me to this forum. Another source of support is Brain & Shine, run by aTBI survivor and his partner.
It’s early days in his recovery (sorry) and if he’s like I was, then he’s having a hard time understanding what’s happened and grieving the loss of his former ‘self’. He’ll be in a spiral of grief, anger, self pity and a feeling of being alone. Please understand I may be wrong, everyone is different, I can only say how I was and I wasn’t nice.
If he’s in the same place then I can give suggestions, but everyone is different so they are only suggestions.
Don’t rush him, don’t push him. Give him space to work it out. Speak to his GP and ask him if he’ll see your husband so he can put him in touch with mental health support, counselling, etc. Check Headway website and see if there’s a branch in your area where he can attend meetings.
Look after yourself. This is hard on you and you’ll need support. Speak to your GP about it and see if you can get counselling or other form of support and help. Chat, scream, rage, swear, cry here. We’ll “hear you” and offer support to you from this end. This forum has been a lifesaver for me. Go out, meet up with friends for coffee, join a group (paint, dance, singing, exercise anything) so long as it takes place outside the home. This will be your time.
I hope I’ve helped in some small way. It’s a tough road but you don’t have to travel it alone.
Take care x
Thanks everyone. We did have support through insurance, but the other side stopped funding with no notice , which has really set him back. We saw the neuro rehab last week and they'll.put us in touch with the support team, but who knows how long that will take. I thought the hospital rollercoaster was bad, but it's nothing compared to this. Every day is a struggle. I'm going ro try headway again. The main problem is he won't engage with what could help so I'm struggling to understand why you wouldn't even want to try.
That last sentence - that would be classic depression.
I was given lots of ideas of things to do early on by well meaning friends and family - but the truth is they didn't realise the enormity of what they were asking me to do with my screwed up brain - it was like being asked to climb Everest. I honestly tried to set up a work style routine at home while I was off sick, but was quite relieved when the neuropsychiatrist basically said ' well that wouldn't work at all - probably make things worse' the problem is we look ok on the outside - on the inside it's a different story though. Six and a half years in, I can actually follow conversations (but talk a little bit less) write emails (but get a bit tired and am slow compared to before) remember strings of numbers like telephone numbers long enough to write them down ( small miracle - took a while!) Keep going all day without a break (occasionally) go in supermarkets without feeling (too) sick - and even go on holiday by plane (hurrah!) but be exhausted for a week afterwards. Luckily the short term memory is still a bit iffy ( I write everything down on my phone) so I don't really remember that much old me, but am conscious that sometimes its quite hard being 'new me'.
Thinking back, all the stuff you would naturally take for granted and be able to do, is suddenly incredibly difficult - it all takes effort that wasn't needed before. Can you get him to a neuropsychologist that specialises in brain injury rehab - just being understood by someone else can make a massive difference to how we cope - this is why this forum is so very helpful.
On a personal note, I'm so sorry you feel so at the end of your tether too. Have you got time to read this book co written by a neuropsychologist - with some very helpful things for friends and family in the second section about handling someone else's brain injury. It's by Jody Mardula and Caroline Vaughan and is called Mindfulness and Stroke - it takes the form of a personal diary by Mardula, with comments by Vaughan, and then a second section by Vaughan at the end. Look up Mardula - she was involved with mindfulness at Bangor when she had the first stroke. Also look at 'The Ghost in my brain' by Clark Elliott.
On fatigue, which is the thing that challenges most of us, also look up the Spoon Theory.
me-pedia.org/wiki/Spoon_theory
Perhaps ask him how many spoons he's personally got at the moment?
Good luck, and hang on in there.
Badskater is right - your husbands brain isn't working properly and that's why he won't engage. It's not deliberate and it's difficult to understand because your brain does work properly so you can see logically how important doing the various exercises/therapy is. And quite understandably you're desperate to get on with it and try to start getting your lives back. Try not to panic or despair. It is still early days and yes you will be sick of hearing that but it's true. Make sure you get some support for you, I soldiered on for ages (about 18 months) and when I finally crumbled I literally couldn't stop crying. You have been through a huge trauma and you're carrying a massive burden in terms of all the stress and worry and responsibility. Get some support so you can breathe, and gently persevere with your husband. His brain is slowly recovering and you may find he begins to engage in time.
Will your husband take over his own rehab and you step back a little , as he has to want to feel better to actually achieve it .. I sound like your husband but I am and have been doing anything and everything that I can to stop this new me .. it most definitely has brought my worse side out and I feel emotional detached from everything .. unsure if this is the brain damage or just the trauma of the ne person that I am know ..
also would be go to a joint cousiller with you as this helped me and my husband speak in a controlled environment and be listened to .
I’m sure you will get others on here more advice as this has been the best place for me and I know others feel the same way.. Sue
Hi I also had my tbi from an rta back in 2019 & also lost my sense of smell wich has never come back ! I think lots of us have had points of very low mood & felt like giving up it's sounds like he's suffering from depression so I think you will need medical advice with that I personally started with cooking to improve cognitive abilities don't get me wrong it came with ups & downs then I was driven to back to things I liked to do so I started fishing it got me out and helped with head space and there things grew .really try with things he liked small steps but you will hit ups & downs enjoy the highs & the lows will decrease hopefully over time. Keep strong the recovery journey of brain injury is a tough road for everyone involved
Hi wife, I too suffered a moderate/severe tbi on the GCS, coming up to 6yrs ago. I was just separated from my Wife before incident and divorced just after and a big part of me knows I would have been hell to live with. Fatigue, motivation and anxiety depression are huge factors, personally if I pushed myself to achieve an activity I’d feel a lot worse after because the fatigue worsened my symptoms. If I had someone to do things for me i would have used it to sit around full time.
You are an example of how support for head injuries could and should be improved. All carers should be warned - a simple link to an on line document or video would do it. Or a pamphlet in hospital - that reactions of extreme grief at the loss of function and deep depression are common in brain injury, phone the GP service if/when they emerge.
No carer should be left to go through this as just raw novel experience.
Stopping this would be virtually cost free for the state.
Thanks, I agree. The family support has been pretty woeful. From 'we don't know' how he'll be affected in the hospital, through post-support. I've always said it's like I'm being gaslit, as he acts like my husband, Sounds like him, says some of the same things, but its not him. It's only when I read the literature it reminds me that this isn't normal but the injury. I'm just really tired, trying to get through, sort his employers, benefits and be a mum to a teenager who's pretty much lost their dad. While the nhs were amazing in the immediate crisis, once he didn't need nursing assistance we were thrown to the wolves. He can walk, talk, feed himself, so off you go back to normal. Seeing neuro rehab once or twice a year is not support.
Hi I am in a similar situation. Husband suffered TBI in November 2023. Hospitalised for 9 months. Been home since August. Still waiting for cranioplasty. He mainly sits around all day and is struggling with mental health, I try and give him structure but I am working full time whilst looking after our teenage / pre teen kids. Whilst also juggling therapy, hospital appointments, benefit claims, employment situation and spiralling financial situation. I worry that I too might break and who will look after everyone. We feel very lucky to still have him with us but it is so tough. And he is changed massively.
Hi TBI-wife,(I don't reply to many posts)
I can hear your frustration. And I see you. We all do. It's a lonely place to be on the other side of the injury. To be the hands, legs, eyes, mouth, cheerleader, nurse, housekeeper, chef, advocate and of course partner. It's exhausting, and I want to tell you that it gets easier.
I have and still do exhaust myself trying to fix my husband 4 years post injury. I just want him back. I just want him to try. He could be better, stronger and we could all be happier because he would recover and it would all be good again.
But I realised maybe a year ago that I was damaging myself and not allowing him the space to become or accept the new version of himself. If I could force him to just DO the things. Take him to physio, OT, gym, make him docomputer programmes and walking excercises. Specialist eyewear. Speech therapy. The pile was massive and I just kept piling, because we could fix him and then everything would be fine again.
So I took a step back because if I hadn't I would not be around to look after our kids or him.
He declined, but I started relaxing a bit. I gave myself space to grieve. And that grief does not go away, it just changes somewhat. I now feel he has relaxed a bit and will sometimes do more, but on his own without my nagging. I do of course still nag.
But sometimes when I'm getting all anxious and annoyed at him for being so incapable and not doing more, I step back and see myself through his or my kids eyes and am taken aback. Sometimes my good intentions don't seem so good.
He just wants to be home, and take part in some bits and bobs, go for a drive. Eat good food and watch Netflix. And sometimes we have a bit of a breakthrough. And sometimes he will push himself. Sometimes I will lose my rag because that desperation will creep in again. Sometimes, he will do the same. Because he just wants me to leave him alone to stuff a whole chocolate eclair into his mouth at once and to cheat leaning against the wall while he walks.
But please don't let yourself get tattered and torn. Time can and will help, it will also hinder. But it's a balancing act. And none of us are brilliant at it. But maybe give it all some time and or space.
I hope this doesn't come across as defeatist, because none of us in this situation are. But our job is and will continue to be hard as nails. May be worth picking some of the bigger battles. Or letting go of the plates that may be made of paper and picking one precious porcelain plate or two, and just keep them them in the air for now.
If he doesn't want to do a thing... maybe a period of picking one thing that you want to push him to do and just let the rest land where they may?
Apologies for the unsolicited advice, but I see myself and my husband in your situation. (I have binned some or most things because I could tell they made him feel bad, and me frustrated) And yes as some have said in the comments, there is just not enough support for THIS stage. But unfortunately we have to tick along as best we can in our different bubbles because not one of them is the same. And this is maybe where external support is difficult and can often seem to lean into the "find time for yourself/mental health" sessions.
I'm not sure whether any of what I've just typed resonates, but just thought I would pop in a (very long) comment to let you know that you are definitely not alone. Here if you need.
O
So sorry to hear what you’re going through. It’s so tough.
My husband’s brain injury was five years ago when my kids were at primary school and all I could do was to try to keep them and him safe and fed while trying to hold down my job.
He was breaking a lot of things and hiding a lot of stuff like my phone and wallet and keys, trying to put his fingers in pans of boiling water and take food out so the freezer and fridge and hide it so it spoiled.
So I had to hide things to keep our life on track. There were many days I dreaded waking up and I felt so alone but I had to keep going for the kids.
The good news is that progress will be made, you just need to try not to drown in this stage - albeit it is generally slow and painful. After a few years recovering my husband is a lot now better and can work part time. He still lacks motivation and empathy but if I try to patiently explain he does listen and can absorb. I’ve had to accept that while I’m working madly to sort kids/job etc, he’ll want to spend hours watching crap TV without helping but I understand this is the injury and I’m at peace with it now.
I wish you all the best, it’s a hard journey but it will get better xx
sounds like he’s still rejiggleing his grey mater!! Took me several years to recognise accept the changes in me. Y doing bril!! Ease up. And maybe he’ll be more inclined to do stuff?
Hello , I can't understand what is the matter with him? Which illness? But you say the smell and taste.That is also my problem after encephalithis. What about him?
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