Traumatic brain injury

[Littleferns]

Anyone got any advice for me? My DD (26) was knocked over by a car 3 months ago. She received a traumatic brain injury and is still in hospital. She’s currently in a neuro rehab unit and I’m really struggling. In some ways I feel like I’ve lost my girl and yet Shes still here. Her short term and immediate memory has been badly affected. She seems to be cognitively intact but can’t retain any new information or remember anything about the last 2 years.
physically she can’t walk and has a severe right sided weakness.
she has a growing awareness of her situation and has been really sad that she’s not ‘normal’ any more.
How do I navigate this and be the best mum and support for her whilst dealing with my own grief that her life has changed forever. I could cope with the physical difficulties if only her memory was better.

I hope she recovers well.

Have you been directed to Headway? https://www.headway.org.uk/

I have no advice to offer, but couldn’t just scroll past without saying anything.
Im so sorry for the position you are all in and I hope things get a little better each day ❤️

Dearover There is Headway support at the neuro rehab unit and she is lovely but I haven’t had chance to really speak to her on my own.
Quite rightly the support is focused on my DD ATM. I am just putting a brave face on things when I’m there but I cry all the way home. It feels like I’m grieving but she’s not died (thank god!)
but I feel guilty for even thinking like that.

Please don’t feel guilty. It’s very logical that you’re grieving - grieving the reality of the loss of the life she was living and the loss for you of that daughter.

Ever has changed for both of you. Staying the obvious I know, but it really is understandable that you feel this way.

You need your own support so that you can continue to support your daughter. Thinking of you.

I have no real advice but I didn't want to scroll by.
I think grieving is an understandable way to feel to be honest. Your DD is still alive but you're grieving for her former life and the difficulties she's facing. I really hope she recovers well.
A former colleagues father had a traumatic brain injury after being knocked off his bike by a car. He had severe memory and personality changes to start with and had to relearn a lot but 5 years on is able to walk and drive and live independently, albeit with some balance problems.

I’m so, so sorry. This sounds so traumatic for both of you. I agree you need to grieve the life you thought you dd would have, but don’t despair - she may recover much better than you had hoped.

Sounds like you might benefit from some MH support? Sending gentle hugs.

FeelingSoOvewhwlmed I hear stories like this and they give me so much hope, She has already improved so much, but the loss of memory and ability to retain anything scares me. No one seems to be able to tell me if that will ever change. She is scared too and not understanding why every day she wakes up not knowing what has happened and where she is. It’s like Groundhog Day for her. I grieve so much for her but also selfishly for me. Shes my youngest and was just becoming independent and suddenly I could do what I wanted to do and now it’s looking like she’ll be dependent on me forever so all my plans and dreams are gone too. Which makes me feel bad for even thinking that.

I would consider that grieving, but for an imagined future rather than a death. It’s completely understandable.

I don’t know Headway but do they do any family support groups? So you can have a chance to talk.

That sounds really hard - for you both.

In the 'brain healing' world 3 months is nothing, so what she's like now is probably not what she'll be like in a couple of years. The brain takes a really long time to heal - new 'pathways' are formed to bypass scarring etc...its a really complex thing, and it all takes time. And yes, her life has changed forever - but what you're seeing now is unlikely to be the end result, if that helps?

(Caveat: I'm not a brain surgeon, but I underwent emergency brain surgery a few years ago, and the difference between me at 3 months post surgery, and me 2 years later was huge... And at the 3 months mark I thought I was 'fine' and couldn't understand I was unable to work.)

Wishing you and her the very best, it's a long journey 😔

My DSis had a stroke when she was in her 30s - it was devastating. Her personality changed significantly, and it was so hard for everyone. The thing with brain injuries is that no one can predict how your DDs recovery will be, how long it will take, what permanent impact it will have on her and so on, so trying to find out the answers to these things is nigh on impossible.
So, rather than looking at the long term, look at the here and now. It helped my DSis when we made a photo album with pictures in to remind her who we / her Dc / her best friends were. You could do this now on a tablet with a voice over so she could play it back when she’s confused over what’s happened.
Focus on the short term things - physio, speech and language support etc. My DSis would get very tired very quickly as it took much more effort to do anything both physically and cognitively in the early days - she would need to sleep a lot! But gradually, over time, she began to improve.
If you focus on her making small steps improvement rather than her ‘getting back’ to how she was before the accident, that will help all of you.

I am sorry to read this. Try to remain positive and hopeful. Although a slightly different scenario to yours, thirty years ago, one of my parents had a brain haemorrhage. I was told the chances of pulling through this relatively unscathed, was about 30%. My father was on morphine for two weeks and was told they might have to operate. To cut a long story short, he is still here and probably 95% of the person I remember him to be before this happened. Rehabilitation and recovery at home took many months and he periodically experienced excruciating headaches for years. The plus side is that your daughter is young and there are some brilliant physiotherapists out there. It is ok to feel sad about this, her life may have changed, but it just might be slightly different. Humans adapt and hopefully in six months or a year, things will have improved for you both.

Sorry, I am not able of help as I suffering with this after two years after a stroke on my left side brain. It's a long process and I am won't be fully healed for years, if ever. I have trauma after being neglected in the stroke ward too and am still traumaised (sorry, can't spell) it was like being in a nightmare.
I can only send you best wishes and hope your daughter was recover. It might take a long time so good luck.

countrymouse so sorry you have been through this and that you didn’t receive better care on the stroke ward , where you should have received the best of care. My DD was on a stroke ward for 6 weeks after 4 weeks in ITU whilst she was waiting for a bed in the neuro unit and I was honestly so shocked at the poor standard of care I witnessed at times!
I have always defended our NHS but I’m not sure now at all! The lack of understanding of stroke on whats was supposed to be a specialist ward was worrying.
I hope you received better care afterwards. The neuro unit m’y DD is in now is absolutely amazing!

Hello I was about to log out but I saw your thread and it really resonated, how is your daughter and how are you ?

hope the charities are supporting by now. I have been through this with my child, the hemiplegia and spasticity will get better, really important to use splints and exercises. The memory is really traumatic for them but it will get better, if she has not already been offered the clinical trial where they are offered ssri after the tbi is probably really important to follow up with neuropsychiatrist/neuropsychologist Sri help with depression that’s very very common and it’s neuroprotective. Right side hemiplegia has better outcomes than left, take it easy it’s a very very slow recovery process please remember how she is now is not how she is going to be. Fatigue is very normal. Best wishes, feel free to dm me.

I forgot so say, get her a good lawyer if she hasn’t already one.

Yes - lawyer up is good advice. A friend of mine lost her leg in a car accident and the insurance managed to get her private medical treatment throughout her prosthesis is much better than an NHS one etc.

a friend of mine also had a traumatic brain injury in her late 20’s. She was rock climbing. Induced coma for months and a long journey for recovery. She’s now in her early 40’s with a nearly 2yo and is happily married. She won’t work again but has a lot of really positive things going on. I’m sure her mum would consider talking to you

light11
how lovely of you to comment. We’re nearly five months in now and she is making slow steady progress. She has walked a few steps with the physios and has progressed from needing a full hoist to a standing turner to transfer. She can eat a soft diet and is no longer fed by tube.
But she still has no functional use of her right arm.
Her medium and short term memory have all but gone but the last couple of weeks she has demonstrated an ability to retain some information that we give her.
she is just so sad now she is becoming more aware. She misses her memory and her life and is scared at the prospect of always being disabled.
There is good neuropsychology support at the rehab unit. She is also having to deal with the information that her bf died in the same accident but she feels she can’t grieve as she can’t remember him.
There is no suggestion the car driver was at fault. So I don’t think she would be entitled to any compensation. It’s a long story but her bf was trying to hill himself and she went into the road to try and stop him and they both were hit.
it’s such a tragedy.
I will send you a personal message thank you so much as I do feel really alone.

sausage monkey
mit helps so much to hear stories like your friends.
All
my daughter has ever wanted is a home and family and she keeps saying now no one will ever want her and she’ll never have children now. It breaks my heart when she says that.

How is she now? All the best to you both.

There is a Oliver Zangwell centre in Cambridgeshire that’s supposed to offer really good neuro-rehabilitation as well as counselling for the depression and PTSD that comes from surviving a TBI injury.

sorryididntmeanto
how lovely of you to ask.
just over a year after that awful accident she is home with us and continuing her recovery.
yesterday for the very first time in physio she walked with no one supporting her. It brought such a lump to my throat!
her memory is still poor but she does retain quite a lot of new memories. She has been we been able to remember her boyfriend.
She still has a very long way to go and there is no doubt it is life changing for us all but I will never give up hope that she can improve.
I am on a long waiting list for talking therapy for PTSD for myself.
There seems to be very little support for young people with a traumatic brain injury, the local Headway doesn't seem to offer anything for her or me.

Thank you for updating. My sister suffered a similar thing just over a year ago, although the circumstances were not as traumatic. She was little older, late 30s. She has been lucky to also return home. She is able to walk but faces other challenges. I'm sorry to hear you feel unsupported, but I am glad to hear that your daughter continues to improve, albeit slowly.