After joining this group in December I’ve read loads off your post (some very helpful) I thought I should write my story
The only thing is that I would not no where to start and my post would turn in to a book as me and my family have had so much happen is over the last 12 mouth it’s untrue.
But really really long story short, dose anyone have any good advice on caring for someone who as had a brain injury as I am finding it really hard especially because my partner dose not accept this, and thinks that he as made a full recovery 12 mouth after being in coma for 4 weeks (after driving our car at very high speed in to a lamppost) and had to have a tracky and and had many chest drains
And had his ribs fixed as they were broken and leaning on his lungs preventing oxygen getting to his lungs. After waking from his coma he discharged himself from hospital as he thought the doctors wanted to kill him, my partner did not receive any aftercare due to him discharging himself.
I could go on but there’s not enough hours in the day and am already playing catch-up and it’s only 8am
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Kt333
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Talk to Headway Kt. Going into denial is so common after a brain injury because, although there are usually personality changes to some degree, the person with the brain injury doesn't see them ; they're in their own private world.
Sounds like your partner might be resistant to any therapy or aftercare so getting help for him will need some clever tactics. We have several members who care for difficult loved ones, and it's hard work. So please contact the Headway helpline for support and advice on 0808 800 2244 (office hours - free calls).
I have a brain injury so see things from a different perspective, but I know from what I've learned here what an enormous challenge caring for another can be.
I hope you get the help you need m'dear, but it will take time. I'm sure there'll be advice to come from those with direct experience.
Reading that brought back bad memories. Whilst I was on the I.C. ward I had a psychotic episode, when I realised the nurses were dissecting patients for alien research. By the time my distraught wife arrived I'd been sedated and I was insisting we had to escape before it was too late.
I was in hospital for a further 4 weeks and it took around 3 days before I accepted the nurses weren't aliens.
After discharge there was no follow up, it was 7 years before I was referred to Neuro-rehab.
For the first 12 months following my bleed it felt like my head was a snow globe, which had been given a good shake, feels like your nerves have been exposed and it's a emotional whirlwind.
Lack of insight is a common problem and even now I can find it difficult to self monitor.
By the 18 month stage I began to feel I was back to normal, I doubt this is true but then my second bleed so that does complicate things.
I can't be sure but I feel confident if I'd been referred to rehab a lot of the things which caused my life to unravel wouldn't have happened.
It was 2014 before my life began to settle down that's 12 years of bad things, which could have been avoided and my story is not that unusual. The lack of aftercare is a national scandal, do try and get rehab support a GP can make a referral.
i had a stroke 6years ago which left me with a brain injury, epilepsy, ope ( um my behaviour is unpredictable indoors and out, but im unaware of it until im told ) ive adhd, noise intolerance, but we have a good marriage, ilove my wife, i cause her no ends of problems when we are out because she is continually looking for possible flash points, pubs and restaurants are a nightmare for her because i been known to kick off but not know about it until she tells me off.
i dont go out on my own, i enjoy the time i spend with my wife to me thats precious.
i hope that helps, but thats from a man with an abi X
I am sorry to hear about injury and the delay in my reply
After reading yours and other people’s reply’s I feel a bit more optimistic about my situation I no that I’ve got a long road ahead but I love him sooooooo much n miss him even more but to be fair HE IS THE SAME PERSON just with a brain injury.
I don’t no wot our future holds but I no I am gonna remind him every day how much I love him
Keep showing him photos and keep making plans for our future as a family, and hope n pray that things will get better for us
All TBI’s are different in some aspect. However, I slept in a 2 week coma and thought I had recovered in 6 mths. I was wrong it took me 3 yrs to recover 90%. We can of course never recover 100%, it is impossible. Us men do find it hard to be weak though, we have to accept it at which point we can then start to repair ourselves. Good luck with it x
My partner has cared for me for 24 years it has come to the point he cannot cope any more with my moods . So he is divorcing me which as the person with tbi I am finding devistating. He should of gone at the very beginning. So if you cannot handle the situation now then it may not improve or get worst so do not give your partner false hope.
My husband had a bilateral subarachnoid haemorrhage in January after having silent bleedsover a few years. His behaviour towards me over the last couple ofyears has been awful. But like your OH he's also in complete denial about the whole thing.
It really impacted on my mental health, he's now hypersensitive to my mood changes so couldn't cope and had left me. He thinks we can live separately and remain married. I've told him it's not what I want. So I think we are going to end up divorcing. He's now completely selfish, never to blame and fixates on something until I could scream and he has said awful things about me to his family. They don't want to know me now but do nothing to help him. That's still all left to me. I do still love him but I have to be my priority. I know he can't help it but as he refuses to see anyone for any help I'm stuck. It's a terrible situation to be in.
Have you got a HATS nurse you can contact ? Ours has been really good and supported me all the way. You could ask the ward he was on for their number and see what they can do. All help is valuable in these awful situations xx
And what you wrote about ur OH behaviour sounds very much like mine
I get so Mad repeating myself then watch him struggle to do the simplest of things and then I just want to cry for him and love n care for him, I feel so sorry for him, and I do luv him ( the old and new him) but I just feel that his needs are starting to come before the rest of the families and HE doesn’t even see it, but myself and our 4 children do as we are always putting things on hold because off his behaviour
And as for support, I’ve sent many emails to support groups near me but not much hope, as I’ve had no reply
I do have a appointment with my health visitor next week (we have a six week old baby) and will ask her for some advice when I see her
I am also thinking of arranging a careers support assessment
I was only unconcious for a very small time. I came to the following days and apparently was rather disruptive to the point I discharged myself.
All this I cannot remember first hand...In fact the first year I rely on borrowed memories.
I then deduced that due to my short hospital stay I was now on the way to being fit and well
Ok I couldn't walk and my speach was bad but I would soon be back at work.
Was I trying to deny how I was. No I don't think I was. To be honest I just wanted to be well and back to " normal".
Well that didn't happen and eventually I decided normal was not for me.
You mention " love". From my point of view I never stopped loving my wife.
My wife on the other hand as well as not to keen on the new me felt like she would be cheating on the old me by loving the new me.
Confusing to say the least whilst trying to hold a family together. The upshot is we separated to give ourself space to work through things.
It was the worst time of my life...yet exactly what I needed.
Eventually we began dating...God that felt strange....And hen went on to renew our vows ( luckily we never made the divorce courts).
Have things been easy since.....Well no...But we are workin on it.
Basically to answer your questions, your husbands denial is classic behaviour that will be followed by acceptance. As for the person he has become ....That is up to the both of you about what the future has install for you both.
Work at ..even if it means a break...Hopefully you will find each other .
There is a way through...It just doesn't seem so at the time.
Thanks for sharing your experience and I you brought a smile to my face when reading ur reply
We have been together for 14 years and have 4 children
I think that us living apart would benefit our family my OH looks at this as a brake up not way forward even though he can’t stand the very noisy home where we live
I think most couples who go through a traumatic experience can begin to be very stressed, when their partner exhibits the same mannerisms they had during the bad during the bad period, it's something akin to Pavlov's dog.
Paxo05 response was spot on, I think given time for this to settle down and you may find being with each others doesn't set off all those subconscious reactions. The thing is divorce will change many practical things financially, possible including elements connected to the family home. Untangling all that could well make getting your relationship back impossible. Again some relationships can't continue and perhaps shouldn't depending on the couple and the circumstances.
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Hope after a TBI
Any advice appreciated
Seizure 8 months after TBI
