My husband suffered a severe tbi in April 2024 after a motorbike accident which wasn't his fault.Today seems a particularly challenging day, how do we both learn to accept our new normal? He's done amazingly well physically but I definitely think he's struggling mentally.
How did yourself, your partner or family move forward from this?
Some days feel very alone, like no one really understands unless your living it.
Hi LoveRunning,
Recently I encountered a quote by James Conrad from his book, Lord Jim.
"A man that is born falls into a dream like a man who falls into the sea. If he tries to climb out into the air as inexperienced people endeavor to do, he drowns. The way is to the destructive element submit yourself, and with the exertions of your hands and feet in the water make the deep, deep sea keep you up … In the destructive element immerse.”
Despite the contortions of the sentences, it spoke to me. Previously I have viewed active fighting against challenges as a key life skill. This quote made me think more about the fact that there are unique rewards that can come from embracing and even yielding, rather than confronting, a challenge. My husband has a progressive fatal condition. Embracing rather than accepting the new normal has allowed us to find the parts of that 'deep sea' that are opportunities for new life patterns that have filled us with joy for many years that might otherwise have been filled with regret or resentment of the progressive decline.
A few examples. I don't know if the mental struggle you describe is emotional or a difficulty with some types of mental processing. Take whatever he likes and whatever he can do, and work together to make those a frequent part of his life. Rejoice in and express gratitude for everything that he can do and that you can do together. Fill his viewing with positive shows, movies, documentaries that reinforce love and noble struggle. Smoothly compensate for his disabilities. Do whatever level of exercise he can do. Use music to set or raise the mood: Pandora is our best friend.
Wishing you all the best.
Thank you for replying to my post. I keep reminding him to embrace the new you, and it's OK to accept that you've changed.
With two young children 4 and 7, parenting now can sometimes be a challenge. One of us saying one thing and the other the complete opposite.
He does love listening to music and he says that helps, so will continue to do so.
So good to know there's other people out there in very similar scenarios.
spent month in an induced coma after mine. Sorry to sound bad, divorced hubby for abandonment, lost my social group, only family that stayed in contact mum & dad who I supported through their demise. Now bro has power of attorney, siblings fell out over inheritance. Had day centre, closed. Still struggling after 24yeara!! Hope your path goes better! Good luck!! This site is a life saver, hope y find support here!
Though 24 years years 😢 but this site is definitely a life saver ❤️
Hi!
I have no advice but just came to say my husband and I are in a very similar position (he’s recovering from an ABI) so you’re not alone at all.
Physically he’s okay, apart from an unrelated dodgy hip, but mentally - it’s a battle for him (and in turn, me!) everyday. He’s had about 4 different personalities since his discharge from hospital, none of them much resembling the old him and the new one being the most challenging.
All I will say is make time for yourself if you can, it does make the world of difference!
Take care x
This sounds pretty similar to my husband, physically you wouldn't know what he's been through. But mentally some days I'm unsure what husband is going to wake up. It's the hidden disability.We've had various different personalities too and traits he never did before. I see glimmers of the old him, some days are more tricky than others.
Thank you for replying 😊 x
This resonates with our situation so strongly!! I say he’s like Wurzel Gummage never know which head and personality he’s going to put on…
It is exhausting, but that is the best advice, give yourself some time out, you feel so much better and it’s so much easier to cope.. Stay strong lovely….
It really is exhausting, trying to work and two young children too.We're only 7 months into the recovery period and have been told it takes a year to reach the peak but a good couple of years for other smaller subtle changes.
Thank you for replying.
I’m 4 years next week past my accident and still learning .. I have gone from I will win no matter what, denial , operations, fighting pain, anger( thought the roof) but the last 12 months have been a very difficult time of trying to understand, paying private for help to allow me to understand and no longer in denial .. my husband has been though all of this including me throwing chairs , hitting tables , screaming ……. It has been hell and we have done 6 months counselling which has helped us both learn and develop a better way forward .. I very much hope this doesn’t sound just negative as it is four years , I’m no longer in denial ( that’s possible the biggest thing) our marriage is better than it has been for the last 4 years , and I’ve recently started using the App for meditation which is amazing to actually find the OFF SWITCH which I desperately needed and didn’t know how to find it .. .. Sue 🙂
Glad the counselling helped, Teazymaid. We probably need counselling too - but we are rubbing along. Some days better than others. . . . some days me being really unreasonable, and him getting upset. So good that you have found the OFF SWITCH. Does your app keep count of how many minutes you sat? I found one which did, and I sometimes look at the cumulative total, which shows me I am progressing. Slowly, but progressing.
Yes, this platform is an absolute lifeline.
It’s headspace I’m using and yes it keeps track of the minutes I have used it
Well done. Its a great step forward, isn't it. My takeaway for today is your expression - Meditation is the OFF SWITCH. 😀
All I can say is - you are not alone. I was the one with the bang on the head. My husband sometimes feels really isolated. Like nobody knows what he has to put up with.
I do, really, because in the sane moments I tell myself, he's right - I was being unreasonable, and really unkind. There are no moments to tell him so - maybe I will make time to do that.
There are people here all the time. Please, please don't sit there on your own. Any question, look at threads on the same subject. Or any need to see responses, just write on this platform - someone will be here. Talk to headway. Talk.
Organise some counselling - take up meditation. Just suggested things which might help. But most importantly, assume a large, collective hug. That was from us.
I could have written this myself, unless your living with it and in the situation you really don't know what it's like.Sometimes feel like he's trying to protect me from the injury but we're in this together.
I'm having trauma counselling at the moment, trying to encourage him to have some too as think it could be ptsd too.
Thank you for replying x
PTSD is the hardest thing to live with. I have done that. Keep trying, and try every way - the breakthrough will come when you succeed. I have seen two things succeed.
1) Tell him that it is not mumbo jumbo - it is a kind of aid to 'self-training' which improves self reliance, and helps you move into a more constructive frame of mind.
2) Tell him that if he does go and it doesn't work despite him doing everything they asked him to do - there are exercises - then we can all agree that you were right to object.
This was something I had to use.
the chimp parodox book .. it’s brilliant and great for the everyone
HI LoveRunning,
You are in very, very, early days. His injury is still considered 'fresh', believe it or not.
A lot of people are quite reactive in the beginning. Their poor brain may even be becoming more injured in the first 3 or 4 months. This is because the chemicals the body produces, that deal with inflammation, actually melt the tails of neurons.
I know myself, in the first year, I was very easily irritated by ... well, anything... nothing... I didn't understand at the time using my brain was, well, like trying to walk on a broken leg. Of course it complained...and showed itself in various ways.
I feel if you call Headway, and see if they have counselling for family members, that might help quite a bit. You will hear what others go through, may get some resource tips, and start to see he's... well, normal for where he is.
The old him is still in there. Does that mean the old him will come back the way he was before. Well, that's not really likely. The brain reforms connections etc and so they aren't like the old him, but he is still the old him - and will have limits -- perhaps a bit emotionally different - and what is him at his core will still be him. I am not explaining it well.
Asking for help - for you, and not just for him - is really important.
You see, he is often unaware of a lot of things that are going on. That's just part of the injury. That can be hard for you - because he doesn't see it and maybe can't see it.
A lot of healing happens in the first 4 years or so - it keeps happening after that.
There are lots of ideas for coping skills around that can help him - he will have to find them himself htough - because everyone rolls a little differently - this is because the injuries are all slightly different - and because what a brain is like depends a lot on what areas were developed before the injury.
You aren't in an easy spot. No doubt about that.
This is a marathon that goes for years, not like a broken leg where you can do A B C and in 8 months - good as new. It's a process.
Keep us posted. Updates, questions, venting - all perfectly welcome.
Leaf
Really appreciate you taking time to reply, lots of people are saying its very early days and can relate to lots of the things you've said.I see glimmers of my husband some days more than others and he definitely pushing what he can do some days and the pays for it the next day.
I had a TBI during childhood so I can only ever guess who I would have been had I never had my accident (it broke off a large portion of my skull, I was in life support, etc.). I had a road traffic accident, which was not my fault. At the time of my marriage, I felt very much alone and I was depressed although I was never officially diagnosed with it. My wife has been incredibly supportive and having her as part of my life has been a great blessing. She's not a doctor but having simple things such as not rushing to place judgement on me, being patient and encouraging me have been very helpful (sadly that is something that not many people have done for me as many of them would simply see me as some unfortunate person or almost label me as being stupid). It took a while but gradually I was able to move forward and shortly after our marriage, people around me were already noticing that my personality had changed. I am not perfect and there are times when I end up annoying my wife as I cannot understand things quickly but it is considerably better than where I was before.
If there were any basic suggestions I would give: be patient, accept what has happened, try not to place judgement, talk about issues in detail (do not simply expect him to grasp everything the way you would), find ways to cope /find coping strategies and do not isolate yourself. This is a good platform which might help as there are others who have head injuries. Another I would recommend perhaps which also has some resources is the UK charity, SameYou. I hope that helps. All the best with everything and don't give up
Thank you replying to my post, makes me feel less alone knowing people are out there going through similar to my husband and I. Haven't heard of the charity SameYou so I'll look into that thank you 😊
Most welcome. When I had my accident years ago, there was no social media or even Internet so I realise it can be quite isolating /make you feel alone and misunderstood. Here's the link for SameYou, which was founded by an actress, Emlia Clarke: sameyou.org/
It's really tough, particularly given the number of people who (understandably) don't get it, the fact that your mental and emotional capacity to deal with all the issues (and admin!) around it is lessened, and the fact that so many parts of life are not very accessible. I don't want to sound trite or diminish this - I've done an awful lot of raging against the dying of the light, and there is definitely a space for that - whether it's having good people you can rant to, doing so via groups with other people in this situation, or writing down your feelings. Throwing things (maybe beanbags rather than china?) is allowed!
I've also come to appreciate the friends who allow me to just be - that can mean some days just coming round and sitting in bed with me because moving or using screens is too much - and I've had to try to be clearer to some other people on what I need (I think I still expect people to ask me, and they often don't). Tbh I've also lost quite a few friendships. This is definitely a test of relationships.
I think the one thing that helps is knowing that rest is what I need, and trying to think of it as a positive for my body, not just a loss of things I could do. It feels like a bit of a divine intervention to finally sort out other health stuff tbh - not easy, but thinking about what I can do for my partly preexisting issues with sleep, exercise, nutrition, etc, which contributed to the fact I was ahead burnt out. I started a new gym routine (I was never a gym goer!) because of my consequent dysautonomia, and that felt like something to *do*, rather than another thing I couldn't do.
I also feel like I do a lot of nesting and leaning into the little, stiller, quieter comforts (I have a book about 'the joy of wintering' which sums this up). Particularly at this time of year. I haven't explained that very well but - it's basically permission to be what I would have previously called 'lazy' and luxuriate in creature comforts like hot baths, etc etc.
I still try to do some fun things, like the pub quiz but with AF beer (I've really got into that), even if I'm rubbish, when fatigue allows.
And I have this taped up on my wall - sorry I can't remember the author.
'This is the time to be slow,
Lie low to the wall
Until the bitter weather passes.
Try, as best you can, not to let
The wire brush of doubt
Scrape from your heart
All sense of yourself
And your hesitant light.
If you remain generous,
Time will come good;
And you will find your feet
Again on fresh pastures of promise,
Where the air will be kind
And blushed with beginning.'
I completely identify with this . My husband was in a car accident on Christmas Eve last year - despite horrendous injuries physically he has recovered really well . Mentally it is a different story - he refuses any counselling or neuro help but is totally selfish, angry and just wants to be on his own . Not sure how much longer I can stand it - if he would get help I would feel some hope . Today he told me he couldn’t see what it has to do with me and why I feel impacted by it all . Maybe you can persuade you husband to get support - try the Headway helpline too .
Maybe keep a diary that you enter in only positive things in, however small. Then, on a bad day you can look through it together and see those small steps…
Good luck !
My husband is currently in Neuro rehabilitation with a severe head injury frontal left lobe. He’s physically recovering from icu weakness. His cognitive injury is significant but early days. Anyone else in this situation?
Hi Mancityman,
Sounds very similar to my husband in the early days. Once my husband got over PTA the cognitive side improved too, is your husband suffering from PTA (post traumatic amnesia) ?
I'm very thankful and lucky that my husband got to go to a Neuro rehab facility.
He may have PTA as he’s very confused, agitated and frustrated at times. He’s in week 5 rehabilitation currently. I’m hoping that he will improve in time. I’ve been told if not and it’s his injury he won’t be coming home… safeguarding issue his Dr is saying. It’s such a horrific situation if he doesn’t improve cognitively. Physically he’s doing pretty well and learning to stand this week.
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