Hi All, our son was involved in a RTI in June, he was out running when he was hit by a car. He suffered a serious head impact and subsequent brain injury. He is 27 years old and prior to the accident was physically fit and doing extremely well in his career and relationship.
After being airlifted to the regional trauma unit, he was admitted to ICU, we were prepared for the worst, but after some initial complications he rallied and started to recover well. We were told to expect 6 weeks in ICU, another 6-8 weeks in HDU and then weeks/months of further treatment and rehab. Things moved very quickly and he made progress much faster than anyone expected and he walked out of the hospital after just under 12 weeks.
All of this is amazing and a real testament to our NHS. He is now back at home and getting regular support (Physiotherapy, Psychotherapy, Occupational Therapy, Speech Therapy), so there is no real complaint here. My/Our issue is that whilst our son is progressing and improving slowly (and yes I fully understand that it can take years to reach the optimum recovery), we as a family have no idea how to support him and as parents how to support his wife.
In many ways he is becoming more independent and wanting to do things, but it is clear his decision making and awareness of his actions is not where it was. This is causing issues with him letting us support his wife, his managing his finances, his desire to socialise and so on.
Don't get me wrong, we are so grateful that our son survived and is recovering, but the current situation is taking it's toll on his wife and we don't know how to help. We have contacted Headway locally a number of times and never received a call back or any support from them. We are out of our depth and concerned for our son's future and his relationship with his wife. After all they are both very young and have their whole lives ahead of them.
Sorry for the long post and 'thank you' if you have read this far, but any advice would be most welcome.
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Parentals
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As a wife of someone with similar problems..... Over four years, you have to be incredibly strong and tell your partner the truth. Managing the money can be a huge problem. Keep repeating what priority spends are. Try to encourage what you consider safe socializing.It's great you are supporting them both.
Your sons partner will need that so much.
Strange that Headway are not responding. Try to find out where your local group is. Maybe the rehab centre can give you info.
If you discourage always give an explanation. Don't tip toe round it.
The early days are particularly hard and there is no set ways of dealing with thongs. It's a long road.
It is so great you are reaching out, looking for ways to help.
I am not sure what the issue is with Headway. Make sure you are asking for help for yourself, as they may not have the authority to speak to you if it is worded otherwise.
You could also have a quiet word with your daughter in law, with a Headway counsellor to give input - let her know you are there for her and supportive of the marriage and want to help in any way you can.
It is a tricky situation, no two ways about it, as mtbi/ tbi people are not aware of so many things... it does take quite literally years to see and understand all the ways you have changed, and they can be hard to accept. Also, people tend to get easily irritated when their grain is overloaded, going through a stage of being angry easily is really common. In other words we often are not easy to be around. Coping with the injury becomes the water we swim in, 24 hours a day, no hope for vacation.
Local societies have programs for friends and families to attend on their own, and there are Neuropsychiatris who can see him on his own and also meet with you as a family. This kind of setting normalizes the situation to a degree, and the psychiatrist is familiar with brain injury and mentalhealth and family dynamics. Seeing such a person can really help a lot. You will develop a common language and understanding of the situation and won't be flying blind, as you are doing now.
The most important thing is patience. You are going to have to rise above and let a lot go like water off a duck's back. Because there will be a lot of brain injury stuff/changes going on and it is not under anyone's control.
The most important thing is kindness - to your son, your daughter in law, to each other, and too yourself.
Another important thing is acceptance with out understanding.
This is a situation that requires serious adulting.
Doing some mindfullness classes help. I will give you the crash course right here - if you can not solve it or understand it do not spend time thinking about it - think about what is going on right now, or something beautiful, or something that brings you peace, in stead. Watch what you feed your mind - negative thoughts, TV, news, etc - feed your mind instead things that support you being kind, in the moment, and feeling good about the small joys of life - no matter what else is going on.
It won't go the way you imagine. It's ok. It is a journey, not a destination.
Oh, and forget the idea he will ever be the old him again. He won't be. He will still be him, just a different one. It's ok. Acceptance helps a lot.
Also realize that a lot divorces do happen when one of a couple gets such an injury - it is not anyone's fault. When one person suddenly changes so much, the other party just may not be able to adjust to the new person. Or, the new person can't adjust to their existing spouse. Your daughter in law also is her own person, and needs your support as if she is just as important than your son - with full acknowledgement she is on her own personal journey. Both need to be able to breathe and rechoose each other. This is a process that can take some time and you can not interfere with.
Yes, do get help from Headway. Since no response, maybe try asking what you can ask for and that may help you get the right language to access various options.
Bless you for being there. Seriously...... A lot of us here have had relatives and friends run screaming for the hills, never to be seen again. Just keep being there. Messy, imperfect, chaotic, or brilliant - just keep being there.
Leaf, thank you so much for your considered and heartfelt reply. At times we feel so alone and unqualified to walk this road. Nevertheless, we will be here, regardless of future outcomes. Our DIL is amazing and considering she too is alone, she moved to the UK to be with/marry our son after they met in Asia. They both had their careers on track, have bought their own home and in time planned a family. Of course all of this is still 'potentially' possible, but we all know life for them will not be like they had envisaged.
I think that the acceptance is key and some of us are further along that track than others, which again causes conflicts, conversations about 'giving up on him' and such like have been had.
There has also been suggestions that he may return to work (he works in Software Development) in the new year, this also worries me on lots of fronts:
- He is different than before and I worry about how his colleagues may treat him
- If he goes back will it impact his position to future earnings (he has cover for sickness/disability)
- Will his career stall
- How much patience will his employer have
- If he can't do what he did before, how will that affect his mental health and long term recovery
So many questions. I also know he is keen to go back to work, because he is bored and has too much time, but it constantly feels like he is trying to run before he can walk.
I will try to contact Headway again, but am disappointed with our touchpoints to date.
I would say those are all important questions. Only from my own point of view (4 months since having the TBI but bearing in mind all circumstances are different) I would say that it would be a tall order for your son to go back to work how he was before. I have a small car sales business and I am managing that from home but I am pretty sure that I wouldn’t be able to do full days at work. I took a carpet up in our bedroom the other day and needed to have a sit down afterwards. Hopefully his employer will be understanding and give some kind of plan to help him integrate back in. I think (again my personal opinion) he will need to face up to the fact he will not be able to do everything as before, please don’t take this as a negative. The more that I have come to terms with the fact I can’t do what I did before my accident the more it has helped me push myself in other ways. He will get down days, I have for sure but it is a case of waking up the next day and putting the bad one behind you.
I would definitely try headway again. They lady I spoke to the other day about my cranioplasty and loss of smell and taste was brilliant.
So very sorry to hear this, and my sympathy as a parent with an adult son and family, as there's sometimes only so far that we can go, but horrendous to have this happen to your son, it's very hard indeed, and you will be naturally grieving for your child, and for what this might mean for his future life.
While my previous work life has gone, I'm painstakingly building a new life which still feels relevant and full - and with realigned priorities, which actually I don't regret. I also need to value what is, rather than what is lost. Brain injury is a struggle though, even if it's one that doesn't show, and your family will need you, particularly when tempers fray.
I'm with Leaf, she said it brilliantly. And as you will read on here, so many family units are left to cope on their own by family and friends, in increasing isolation, that you hanging on in there for them both is invaluable.
If you tried the local Headway before, please try the national helpline number that Marnie posted - in office hours - they are very well thought of by this community.
Every brain injury is different and has a different trajectory. That said, there are commonalities, and the one I have trouble getting my head round, is the initial ( and possibly ongoing) loss of self awareness, which means we still think we can do stuff as we have always done. It makes it difficult for families to cope, and also can impede getting help and treatment - but it's very good to hear from you that he is getting support.
Ongoing help from a neuropsychologist would be invaluable, they are excellent at coaching in practical coping strategies with our fatigue and dodgy memories for example, and for providing emotional support for our frustration and grief for what we have lost. Mine was a godsend, she did so much for my recovery.
The book I think all family members should read, is despite its title, not actually a mindfulness book - but rather a personal diary account of how a lecturer in mindfulness at Bangor coped with her stroke ( another type of brain injury) in a book co- written by her neuropsychologist and friend Frances Vaughan, who has written a brilliant second section to the book about the different ways brain injury affects people, and what they and family and friends can potentially expect, and also help with, in terms of strategies to try, in a very clear and simple way. It rang very true for me, and explained a couple of things I hadn't realised about myself as well.
It's by Jody Mardula and Caroline Vaughan and is called 'Mindfulness and Stroke - living with brain injury'. I got it via my local library by requesting it (after some kind person recommended it on here) and they bought it in, interestingly enough.
Sympathy and best wishes and a virtual hug from me 🌸
Thank you Painting-girl and the other responses on here. I did call the Headway national line and had a lovely conversation with Julie. It truly helps to talk to people who understand what you are experiencing and getting some practical advice on how to cope and how to support our family. We know the road is long and will have many hazards along the way, but with the advice and support on here and elsewhere, I am sure we will be able to attempt navigating a reasonably safe course. We will see how the coming days and weeks will pan out🙏
Hi Parentals,
I’m sorry for what happened to your son - my daughter sustained a traumatic brain injury 3 years ago when she was 18 and it is a life changing experience. Knowing the fact that you are there for your son and his wife will help them not feel so alone through this. It’s wonderful to have that support. It is very level headed of you to say acceptance is key - it really is and it is what will help you get through this - it is something I’m still struggling with! No two brain injuries are exactly the same but life as it was before will not be the same. I wish your son and family all the best for now and the future 🙏
Hi Parentals, Im the wife of a husband with a TBI and 22 months in I am finding it more difficult than ever. Our support network and outpatient rehab has stopped and we are now feeling the real impact of TBI. My husband has been a little miracle having been found at GCS3 after being assaulted .He suffered a severe TBI and wasn’t expected to survive, yet he came out of hospital after 1 week in a come, 2 weeks on HDU and 6 weeks in a neuro rehab unit.
My husband has epilepsy as a result of his TBI but has now had his cranioplasty to replace his skull.
My husband has suicidal days, he is selfish, childish, has no inference, is impulsive, has no concept of finances and thinks his TBI has only happened to him.
We have been together for 25 years and have an 18 and 16 year old.
We have been fortunate enough to retain so much of him, yet he is a different man to the one I married.
I am exhausted…I work full time and I have type 1 diabetes. I fortunately am able to work from home but am effectively a full time carer, raise 2 kids and run our house. I have no time for me, at all, but actually wouldn’t want it.
I am in this in Sickness and in Health but he pushes me to my absolute limits.
The really difficult thing, and what we all remind ourselves many times a day, is that this isn’t his fault. He doesn’t know, understand or do it on purpose, he is single channelled ( as SALT put it).
However I do not under estimate the impact this has on all of us and do sometimes fear for all of our futures.
I have read several extracts to him from this book which I personally found very helpful:
I am also currently reading the James Cracknell book to him, as this is written by him and his wife. However I believe they have now split, his doing, which I have failed to mention to my hubby as I found out after I had purchased it.
I get no support from my husbands family, they and his friends think he is back to normal! My family are amazing and see what I experience, and fear for me and well all of us.
All I can say is that this is a long hard slog. I have no idea where we find our new normal but I will continue to fight for us. We have too much to lose and I won’t give up easily. I just have to accept some days are worse than others.
One thing I took from the first book mentioned is that the person with the head injury will find it so much harder to recover if they continue to try and find / be who they were pre BI. I believe that counts for all 4 of us. This is an experience that has changed us forever, and we now need to work on what our future looks like. It’s just going to take quite some time.
I think your post is so thoughtful, I wish I had more support and understanding from my husbands family.
Sorry for the long reply, it’s just funny timing as we hit, what I think might have been, rock bottom last night.
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My sons brain injury is destroying us
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