I've joined so I can ask this question: have you or anyone you know been in a vegetative state (due to trauma, I believe that an infection or otherwise has a different path?) for over 6 months and have they regained some level of awareness?
My partner was hit by a car and has been in a vegetative state for 6 months now.
A bit of background: He has learned to close his eyes and move them at the same time. He has learned to swallow and has a good cough reflex. He wiggles his fingers sometimes. He will turn his head towards sounds fairly frequently and he is good at tracking you when you walk around his bed. Once I asked him to move his eyebrows and he did but this hasn't been repeated so I guess it was just a coincidence.
Also I am aware that he is on his own path and will not follow in anyone else's footsteps, I'd just like to hear of any other experiences, to maybe get hope and/or perspective.
Also it'd be really nice to speak to someone who has been through similar, it is painfully lonely watching the man you love just lie there and not being able to get any response/nothing you seem to do helps.
Thank you in advance to anyone who answers me
31 Replies
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Hi
sorry I can't answer you I am sure someone will be able to help
May I suggest contacting Headway•s helpline
I am sure they will be able to offer some guidance
Well my heart goes out to you and well done for coming on here and asking for help, thats the first tough step conquered. I too have found loads of advice and gained knowledge on here to help my situation. I have learnt the biggest piece of advice here is time, hopefully over time your partner husband will improve and you will see that. Im sure there will be theres here who have a very similar situation and wen offer more advice but as dillm has suggested give your local headway a call as you will get good support from them.
You are not alone now you have found this forum.
Do keep coming back here for support too. Good Bless and have a fantastic boxing day. XX N
Thank you, I hope you had a lovely christmas and new year x
i dont know about the vegetative state but whilst in a comatose state i could definetly hear everything, i was in a dream state whereby what i heard and experienced influenced what i dreamt. i could hear my wifes voice coming from the sky in my very lucid dreams. There were times when i dreamt i was drowning whilst scuba diving, these were when i was choking due to the tubes and the siezures. There was a time when i dreamt i was getting married again and this was when my wife had put wedding photos at the bottom of the bed and was telling me about it. The photos by the way are an important psychological ploy to humanise him to the staff, otherwise he could become just another piece of meat to them.
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Thank you for sharing your experience, it's good to have an idea of what could be going on inside his head. Whenever I leave him I always tell him a nice story in hopes that he will dream of that instead of anything that could be scary. And thank you for telling me about the photos, after being in there for 6 months I think it would be easy for them to see him as just part of the furniture. x
No experience to offer except Headway helpline and this forum are fantastic they are what got me through my moderate head injury, when I had no other support cause medical professionals missed the neurological injury from my accident only the muscular skeletal injuries. Good advice given to me doctors are better at diagnosis than prognosis. Where I work many children with cerebral palsy are given no hope but with the right therapy and committed carers they exceed gloomy prognosis. So keep positive, and open minded. Focus on the positive signs and get support for yourself you are a casualty too. My heart goes out to you. Keep posting.
welcome my dear i hope that you can the support you need,Headway really are fantastic! and have lots reasourecs and they undsersatnd what you are going through.my heart also goes out to you blessed be xx
Hi, first of all I would like to offer you all my sympathy. My Dad suffered a severe brain injury last year. My experience of dealing with his hospital consultants makes me wonder if you've had the chance to have a proper discussion of your partner's case with the medics who have/had your partner under their care? If so they might tell you what clinical experience or knowledge they have through reading of cases comparable to that of your partner. I also agree with the others who have responded to you that Headway are good people to know of what sort of recoveries have been made in comparable cases. I'm also wondering whether you've had the chance to have a discussion about your partner's current level of awareness?
I hope your dad is recovering well? It was a bit awkward with our situation as the accident happened in the Falklands (he was in the Navy) and spent the first 5 weeks in ICU in Uruguay, so everything was in Spanish. I've been told its 50/50 that he will speak again, but he's recovering slower than they had thought/anticipated. He's still in the hospital at the moment, to be moved to rehab hopefully this month. I'm not sure the Drs at the hospital will be able to tell me as much as the Drs in rehab? Thank you for your advice x
Hi Sera, I'm sorry I can't answer either, except to say Remember Michael Scumacher, the Formula 1 racing driver, he was kept in an induced coma for a very long time and I think Matt said something similiar about his own circumstances on here very recently as well.
You say there is definitely a level of consciousness in your partner, so follow the others advice to keep him 'humanised' in the eyes of the medical staff, while his brain rests and slowly heals itself to a better level than now.
Remember, where there's life - there's hope . It will also be a tremendous strain on you, so look after yourself and your body as well, by eating properly. Also, many other carers on here have said in other posts, about keeping a daily record of improvements, drawbacks, and perhaps some days when nothing obvious happens.
In the months following it will hopefully be a boost and of encouragement to you both during and following his his recovery. Tell him the good things he's done or have happened on any of the specific days.
Thinking of you at what should be one of the happiest times of the year, so I wish you both a Healthier and Happier Year in 2016. S x x
Thank you! I hope that 2016 will be a lot better for everyone and thank you for your positive, kind words, sometimes you just need to hear them to restore a bit of hope xx
This is the first time I have posted- but I read a lot of posts and responses and relate to many of them. My husband suffered a severe tbi in 2011 and was in a coma for 6 weeks with a gcs of 5. He had a tracheostomy and whilst in the coma had spasticated limbs, seizures and muscle wastage. During this time his gcs went up when I was there chatting to him normally, but would go down when other people talked over/about him and did not interact. I know that by being there as much as possible, talking to him like he was my husband and not an invalid and physically touching him and stretching limbs/muscles etc has definitely made a huge difference to his recovery.
When he was at the same level- just sometimes eye blinks for recognition etc it felt that this could be as good as it gets and that was hard on everyone to adjust to. We were lucky that he did improve and we never really gave much credence to the limitations we were told.
When he went into neuro-rehab we never knew what would happen - would he ever walk again? we will know when he walks. Will he ever talk again? we will know when he talks. So it seemed that often I was the bigger expert on my husband than the doctors - to whom he was just a patient. To me he was my life. So I learned everything I could and got involved in every minute of his rehab - attending every session and giving up work to be with him during his recovery.
It was worth having that determined hope - every day is still a physio day 24 hours a day, but it has paid off. He will never be the person he was, but nor will I.
There is hope there - I know 6 weeks coma is not the same a 6 months, but in total my husband was in hospital for 6 months and I can only tell you to hang in there - there can be huge improvements as slow as they seem and there are no assurances. From preparing myself to turn off the machines to what life is like is just incredible!
He talks much more than he ever used to - now he knows the need to communicate when we used to take it for granted, walks in an idiosyncratic way, is joyful when he re-remembers things he has been told again or been reminded of, is still working towards recovery of other aspects - but there are so many amazing things he has achieved, and has yet to achieve, that I am sure you will both achieve things you never thought possible.
Thank you so much for sharing what are spasticated limbs? How did you know his GCS went up when you were there? I'm so glad your husband has come back to you I spent 5 weeks by his side every day, but could barely touch him as he was so fragile, even taking him to have a scan made his vitals drop I just need to remember how he was at the start when his accident happened and compare it to now.
Whenever I go I do a sort of routine: clean out his mouth (which he will now keep open when I do so - he chews a lot normally) wash his face, comb his hair, put deodorant on him, then let him rest for a while and then do some physio on his arms, hands, feet and legs. The other day I was telling him how much I love him and his eyebrows moved into a sort of sad position (it's rare his eyebrows move at all) and he really squeezed my hand hard - one of the worst things i've found is wondering if that's him responding to me, or if that's just him doing it and its a coincidence
You do give me hope I just have to keep trying my hardest and then i'll at least have the small comfort of knowing i've done all I can.
We would talk to him about each fragrance and a time he would have smelled it in a way that might encourage him. We felt we could share more memories this way and help him to focus if that was what he needed.
Whether this stimulation contributed to his improvements or not who knows but it helped us feel closer.
It is so painfully lonely to be so close to someone you love and not be able to reach them the way you want to and I wish you both strength and comfort.
Thank you for the advice he has a tracheotomy at the moment so im not sure I can do that right now, but its definitely a good idea to do in the future when we can I hope you and your husband are doing well x
Amber, I'm looking for people to join a support group. Will you email me at grantmaryweiss@sbcglobal.net? My nephew has a severe TBI and it's not looking good.
Sera, I'm looking for people to join a support group. Will you email me at grantmaryweiss@sbcglobal.net? My nephew has a severe TBI and it's not looking good.
My Husband of 35 years has been in the same situation for 38 days they asked me three times in the hospital to end his life at hospice the last time they were angry with me when I refused after a horrible battle i was able to get him to a long term hospital since his pupils are responding to light and he is also moving his fingers and opening his eyes exactly like your partner I feel lonely scared and i am not allowed to cry because my children become affected and I have no local friends to support me s But i need to give him time and I have hope just like you do
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I just need to remember how he was at the start when his accident happened and compare it to now. 
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