Hi my name is Lorna and I am a fulltime mother of 6 young children and full time carer of my husband, who is a brain injury survivor. It has been 1 year and 3 months since he was involved in a serious cycling accident, where he sustained a severe TBI. He had skull fractures, swelling, 2 brain bleeds 1 of which was in the brain stem, and underwent a crainectomy 24 hours after he was airlifted to hospital. He remained in critical condition for just u der 3 weeks and then spent a further 8 months across 3 different hospitals. My husband was damaged mainly on the left frontal lobe which has resulted in many long last disabilities, he has cognitive impairment, aphasia, communication and processing disorder, deaf in one ear, nystagmus and has been registered as partially sighted. He is still not able to walk unaided as he is high risk of falls and requires to use a wheelchair outside. He still dose not understand what has happened to him or why he can not go out alone or work. It's particularly hard for my husband as all of his friends have abandoned him, he has no family in this country except me therefore he is exceptionally lonely and of course dose not understand why his friends ignore him now. Hospital was a very hard time, he had to re learn everything and there was a period of time after he woke from his coma that we could even communicate properly as he forgot all his English and was only speaking arabic, a language I didn't know, but have since been motivated to learn because of all this and am currently taking lessons.
It's also very hard for me, I have no family nearby so I am doing this singlehandedly, with the help of some neighbours and school mums and we do have carers coming once a day too but the majority is done by me. Although it is tiring and also physically painful as I have alot of physical health issues which I'm also having ongoing treatment for, I also have severe mental health conditions that I've been battling for years and this is where I find is the hardest. I still haven't fully processed what's happened, I still can't get over the fact I will probably never have my husband, how he was before, back. Its like I'm grieving for the person he was whilst getting to know the new one. My love for him has not changed at all and if anything I love him even more and am very over protective of him now but I really miss the deep connection we had before, we were not just husband and wife but best friend's.
I guess I'm writing here because I feel like everyone else doesn't understand how I'm feeling, I get told to be appreciative of the fact he's still alive which of course I am but this is a journey you will only really understand if you experience it yourself.
We have had a referral done to headway for the day centre a while back now so hopefully he will be accepted for that soon as he definitely needs to connect with other people going through similar and likewise for me too.
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Deenlover
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⁷Hello Deenlover, you will very quickly receive many emphatic responses which agree 100% with the feelings of isolation you have expressed here. I had a brain injury back in 1999, I fell on holiday and like your husband also suffered with aphasia and a total lack of understanding regarding what was wrong with me. To a much lesser affect I still have a lack of insight on an almost daily basis so it's an ongoing thing. That's probably not what you want to hear but sadly in most cases whilst the affected person does get better they do have issues they can't really cure and hence have to tolerate. The loss of friendship thing happened to me too, it took a year before I noticed that they were drifting away and then a year later I found myself very much on my own. Sadly, that, like the slow recovery following brain injury appears to be pretty standard too and not at all unusual.
I would not worry about being accepted into Headway, you have already qualified as people who need to meet others in similar situations so I sincerely doubt you will have any issues there. It's a time thing though, it's all time based regarding recovery and if you asked me how long, I'd say think about how long a piece of string is. I overcame some problems but it took years, thinking about it now, it took about 6 years of my life away from me, or maybe 10 years is closer to the truth. And these days I still have issues daily to think about, it's an accident which keeps reminding me that it happened. It could have destroyed me completely but now I just accept it, it's there, it's not going anywhere, it's not going to have a day off, so it's best to just accept it and integrate it into your every day life. I wish you lots of good fortune and I hope soon you start making progress, slowly, as slow progress in my case was all I could hope for. Gradually, day by day, month by month etc etc he'll get a little better.
I'll finish by stealing skydivesurvivor's comforting words - you are not alone, you are definitely not alone, brain injuries happen to thousands of people every year in the UK alone. And all of them have been exactly where you are now, including me, and that has to make you feel just a little bit more positive than before.
hi, merry Xmas! He sounds very much like the old NEW me!! It will be a long hard struggle for y both am sorry to have to say. He just has to relearn so much, for you it’s gonna be much harder unfortunately. Sorry to sound so foreboding?!! I hope y find comfort, advise from others here. Oth survivors and family are here to consult, we use it as a sounding board, we can rant to unseen people who’ve been there!! It saved me many times!! A great place to vent y frustrations & seek information!! Please know we will be here whenever, y not alone!!
So sad to hear how your lives have suddenly changed Deenlover, but welcome to this forum, I hope that you will both find support and friendship here, and in your local Headway.
Oh my goodness, my heart breaks for you, it really does. My children are grown, so I only have my husband to look after, so I can't imagine what it must be like with 6 young children, and your own problem to top it off. You poor thing. I'm so glad he is able to go to a day centre, and hope it's more than one day a week? This will help enormously.
I understand absolutely what you mean about grieving for your husband while getting to know the new one, that's one of the hardest things. Although I have to say mine isn't as severely injured as yours. I too became very protective of him, perhaps too much, taking away any independence he had left, which I regret. But from the sounds of things your husband needs you all the time.
Can I suggest you get your husband to do puzzles, if he is able? And does he do any exercises?
I think his friends are so horrible, abandoning him. Have you tried reaching out to some of them, explain how he needs them? Appeal to their better natures?
I don't know what to say, other than krp posting on here, especially if you need to get things off your chest. People are great on here, and I'm sure you'll get more helpful replies than mine.
Stay strong. I hope with all my heart that things improve for all of you. Xxx
Hi Lorna, yes, my heart broke for you too, reading this. I relate totally to the grieving and the sadness at the friends who have abandoned him. Well I am almost 3 years on in this journey and this Christmas 2 of his friends have finally made contact with me and asked if they can visit in the new year. So you never know. My husband's brother plucked up the courage to visit him for the first time recently and he said he will visit again. ( He told me it was the changes in him he was dreading to see, but he found the reality wasn't as bad as his imagination). Also I do hope you will find over time you will make new friends, maybe you are already, with those kindly neighbours/school mums.I feel it will take years to process what has happened. I miss my husband terribly still, but am learning to adjust. Like you I love him even more now, but my love is a more maternal protective experience. I am learning too, to 'take my thoughts captive' as we need to protect our own mental health.
I send you and your family my very best wishes. And my prayers. A very big welcome to our group, hoping it offers much comfort through all this.
hi and welcome to this group .. I’m the one with the TBI and feel very sorry for my husband having to deal with the new me especially the anger … I’m more than aware how different I am but it’s also very difficult for my husband also .. I’m sure both you and your husband will get help from this group as for me it has been my only support network and I’ve gather more information on here than any where .. please feel free to ask anything 😊some extremely sound advice is always here . .. we are not medics / Drs but we do have experience and hopefully this will help you not feel so alone … Sue x
I'd like to think that his friends have gone beacause they too feel lost about what is best to do and how to do it. It does not come naturally to many people. Rather than leave it up to them to hopefully one day get in touch, how about managing the situation a bit by sending them a group invite for a cuppa with you both. They might feel relieved that there is an opportunity to see him... Once they see him it is hoped they will arrange a time when each of them can go and visit him. If they don't do this, again you could suggest that them each agreeing a time to come and see him. Hopefully that could work?
I might be totally off the mark and I'm sorry if that is the case. I know people are strange when faced with adversity. I just know if they could be involved it would help you as well as your husband.
You have such a lot to do. I hope the Headway comes through soon... Take care xx
Welcome to this forum which I am sure will be a good source of both information and comfort for you.
You are doing amazingly well caring for your husband whilst also single handedly keeping the family going. I can only imagine the strain you are under trying to get through each day - you must be physically & emotionally exhausted. Please try to give yourself some time - even if only a short soak in the bath after a full on day.
My brain injured adult son was a very popular man with a lot of friends. Unfortunately only a few have actually visited him although many message & ask after him. Those that do visit have said they can’t understand why more don’t make the effort - saying it is selfish etc. I liken it to a reaction to someone bereaved - some just don’t know what to say or how to react so just don’t do anything. We are grateful for the small circle that do visit as they have lots to talk about - past memories, families, work etc. Before first visits I explained exactly how son is & what to expect - & I was there with them. They all said their biggest fear was they would get upset infront of him. I told them not to worry & just leave room if they needed to - bathroom break, telphone call excuse to give them time to gather their emotions.
Very best wishes to your husband in his recovery. Thinking of you all & hope the New Year brings brighter days for you & your family.
I will leave all the wonderful advice to others here to give you as I’m still trying to come to terms with it and come here for support. What I can tell you is that everyone here is amazing. They understand and help so much with making you feel you’re not alone.
I understand everything you’ve written - I’m still learning to come to terms with it. I had my accident 19 months ago, I still have no memory of that day other than closing the gate as I left for work and then I was in a bed in hospital and it was night. I didn’t understand, couldn’t work out why I was there, felt silly being there, thought I should be at home. I didn’t realise I’d nearly died in an accident until days/weeks later. I’ve been told that’s the brains way of protecting you from a traumatic experience. I still have no recollection of that day other than those 2 small memories.
Your husband will improve, but there will be changes to what he can do, but he’ll still be the man you fell in love with. Stay strong, come here to ask advice or just to “let of steam” after a bad day. x
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