Is there anyone else who has a partner in a PVS?

Its been nearly twelve months since my partners accident, after spending time in two different hospitals and a brain rehab unit we have now been told he is not responding to their programme and is showing all the signs of being in a vegetative state (something I always suspected but still not nice being confirmed by professionals). He is now in the process of being discharged and we have to find a care home for him that is adequate for his special needs. I just wondered if anyone else on here was in a similar situation? Most people I read of on here are on some road to recovery....its very isolating being in my situation, its not easy for people to understand...I know I wouldn't of before the accident.

5 Replies

  • Hi millie67

    Please do remember the Headway Helpline is available if you need to talk things through. As well as being a listening ear they will be able to talk through your situation and suggest sources of support. The telephone number for the Helpline is 0808 800 22 44 or you can email

    The helpline is open Monday to Friday 9am to 5pm.

    Best wishes


  • Dear millie, my heart goes out to you knowing how you've been clinging to any thread of hope all this time, only to have it pushed aside. It isn't a comparable situation, but my ex-husband (who's remained a good pal & is the father of my son and daughter) is now in a nursing home having spent a year in three different hospitals.

    It's quite heartbraking because although it had been a slog campaigning for speech & physio therapy it had become a prob/possibility since he had recently started to eat again after previously relying on a PEG. Although he hasn't supported his own weight for over twelve months and, apart from barely audible "Yes" & "Love you" on a couple of occasions, he doesn't speak. He does, however, interact with family and nursing staff by smiling and nodding or shaking his head.

    We were all so releived when he began eating again, and the next challenge was to get him to speak, in order for him to communicate what's going on in his head. But then the phone call came to say he'd been taken back into hospital with pneumonia.....caused, they suspect, by him inhaling the food.

    So we're all holding our breath again to see if he pulls through.

    But for you, millie, it's your life partener; your soul-mate, and I'm sure his decline has been devastating for you. I'm so, so sorry for how this latest development must be impacting on you and other members of your/his family.

    I hope you can take some tiny comfort from knowing there is someone out there thinking of you and willing you to be strong for the next chapter.........and from everything I've read.........It still needn't be the end of hope. With love, Cat xx

  • I know this is an old thread now but I'd just like to say that I am thinking of you, and that I at present am in a similar situation as you x

  • Hi Sera, I came across this discussiontoday accidentally and sorry to se you haven't had any responses so far. Sadly of course we are between Xmas/New Year. So I'd like to say I am sorry to read you are now where Millie was 2 years ago. Please do contact Headway on Monday if you can, either by email or I find telephoning them more helpful.

    Sorry I can't say anything more helpful at present, but if you want to add anything else or start afresh with a new Post putting more, then I'm sure you'llalmost immediately have responses from carers as well as those with BI's like myself. However I do understand how isolating it is or can be, whichever side of the fence you are on.

    So I'll finish by wishing you a hopefully Happier or better New Year!

    Take care, look after yourself, and I'm sure we'll chat here on HW again soon!

    Thinking of you also, virtual hug from Shirley x

  • Hi Sera, I'm sorry I haven't replied to your comment, been busy over Xmas. Thank you for thinking of us xx I hope your ok? If you want to message me for a chat that would be lovely, my partner is now in a permanent vegetative state and lives in a rehab unit, it's been a long and bumpy road to get to where we are today. How is your partner? And how are you coping? It's a lonely place having a partner with a brain injury, in over three years I am yet to meet anyone with similar circumstances to me and my family. Sending hugs and good wishes for the new year xx

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