Needing a little hope.

My ex husband,Geoff,suffered a SAH seven months ago and does not yet walk or speak. He has managed the odd word now and again but nothing convincing. He has also responded to family with smiles and cheeky gestures. He is now in his third hospital and we have been told he is to be discharged in two months time as he isn't progressing and they don't foresee any iminent change.

Our son and daughter are very saddened by this, although they always understood it was a possibility, but our expectations were clouded by the fact that I had a SAH just six months before and, although there are always residual problems, I was home and functioning within three months. They had seen me at the worst stages of the illness, so they were still recovering from that trauma when their dad collapsed with the same thing.....awful for them.

So, for all our sakes, I would really appreciate any information from anyone with experience of progress after such a long period. It would be something to hold on to that Geoff might,one day,have some quality of life,

Regards,

30 Replies

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  • Yes, Anthony, I've seen your references to this several times.......I'll do some research.

    Thanks. ;) :-I

  • life really hasnt been very kind to you all i had an sah in dec 2007 i couldnt even stand let alone walk on a frame until may 2008 after 3 hospitals and 16months i was discharged but not to home my decision home was in spain and i would have been far to much of a liability and burden on my fiacee and her 2 girls as for the talking i am afraid i canrt offfer any comfort other than when i was in hosptal there was a lady with similar problems but the speech and language therapist had he talking in a few months good luch god bless neil

  • Thank you,Neil, for your support. I know from your history that you are no stranger to heartache.

    Take care. cat x

  • i hope things do improve fr him.as u been through a lot already .x

  • Thank you,ricozoe,for your comforting message.

    Best wishes, cat x

  • In terms of a TBI 7 months is a relatively short time. Please do not give up hope.

    Geoff is showing very positive signs. It is essential that if he is discharged from hospital that he continues to receive rehabilitation. His consultant should be able to recommend somewhere suitable.

    Remember as a family that the best rehabilitation is contact with family, friends etc. Keep talking about happy memories, current events, his hobbies, etc. Gentle physical contact is also good. Just stroking a forehead can be so reassuring.

    Sending best wishes to you all. x

  • Many thanks,Sandra, for your reassuring words, We will not give up hope.

    Best wishes, cat x

  • For some the road to recovery is much longer than others. My brother had his TBI six years ago and is continuing to make progress even though we have been told many times that nothing more could be done for him. The key for him has been to keep accessing services such as Speech & Language and Physiotherapy and to make sure that he does the recommended exercises every day. I absolutely agree with SandraEB that social contact and interaction is really crucial. I have met many people over the last six years who have suffered a SAH and the ones that seem to do best are those who are stimulated and are encouraged to keep trying. Try to remain positive, there is definitely hope for him and remember that each brain is unique and will recover and develop at a different pace.

  • Many thanks,Kakebock,for your reply. It's inspiring to hear of your brother's continuing progress......and may it continue. Your message is very encouraging and appreciated.

    Regards, cat x

  • Everyone seems to recover in their own time and pace but Im aware that answer is not much help to you :-( it sounds like u have all been through so much already. I know people who have taken varied times to recover but the important thing always seems to be someones recognition on their limitations but also their determinism to not give up and to persevere. The drs can rarely give definite answers in relation to recovery and brain injury so I hope Geoff has the strength to keep fighting regardless of any predicted outcomes.

    Take care

  • Thank you so much,Marmite.

    Best wishes, cat x

  • I am so sad to read your story, first thing I would like to say is please do not compare your condition with your husbands, however similar no two conditions are the same,

    Has you husband had physio? there are a number of different types; walking talking cognitive balance, so check these out and push push push for the right services. As frightening as it is for you it must be as distressing for your husband. After my operation in October 2007, when I was asked to sign a care plan the realization that I could not write scared me senseless. Before my physio got me up and walking she focused on me getting up and out of bed on my knee's talking came in the form of singing. I lived on my own and would sing to my dog; just as well I did not live with Simon Cowel.

    I was horrified when an electric bath hoist, grab handles and perching stools were installed in my home, but as the physio said to me she did not want me becoming distressed or physically exhausted and relearning how to do things the wrong way.

    My suggestion would be for you not to put pressure on your husband but on getting the right services.

  • Yes,brighton88,Geoff has been having physiotherapy and speech therapy but in seven months he hasn't responded well enough to receive cognitive therapy. It's so difficult when someone doesn't engage mentally or speak,to persuade them to co operate with any form of therapy. Maybe going home will trigger memories that have lain dormant and produce responses?

    Thank you for taking the time to reply. Everything you have said makes sense and is really reassuring.

    I pictured you alone and singing to your dog and it made me cry ! Take care of yourself. cat x

    PS your dog looks very lovable.

  • yep I felt as though I was going mad, heaven knows what the dog thought, but she was and still is there for me and just as lovable. Only thing I would question is if the therapy seems not to be working, ask if the type of therapy can be changed in order?

    Although I did have it rough it was a case of sink or swim coz I was alone

  • Headway are sending me a booklet on rehabilitation options so that might give us some idea of what's available.

    I was lucky enough to have an uncomplicated recovery so all this is quite new to us. Also, as Geoff is remarried, our son and daughter are not considered next of kin, so imput has been a big problem. x

  • Hi Cat3,

    I sent you another message yesterday - can you just get back to me and I'll post it out - need a little bit more information for the envelope :)

    Thanks.

  • Details sent to your inbox.

    Many thanks,

    cat 3

  • You an ur family have really been through it hope every thing gets better for u xx

  • Thanks for your support,natalie.

    Take care cat x

  • Thank you all for taking the time to reply to my mum ( cat3) it has been a roller coaster year and it really does help to hear other people's experiences, you are all amazing and I wish you all the best. I have to say today was a difficult one as it is Dads birthday and I was unable to see him. Mum shouldn't have to be doing this after what she has been through. Love to you all.

  • Thanks m'dear. Prefer your new photo. xxx

  • Hi cat3,

    Thank you for your question and I'm very sorry to hear of Geoff's situation. It's good to read the supportive replies from our members on here.

    There are different types of rehabilitation unit - some are more intense 'post-acute' units that provide rehab in the earlier stages, and others provide long-term/slow-stream rehabilitation that can last many months and years in some cases. Also some areas have excellent community services that can allow people to continue to receive rehabilitation at home.

    An old-fashioned view was that recovery stopped after two years, but nowadays it is accepted that it can sometimes continue after that point, albeit at a slower pace - that gives you an idea of how long things can take.

    It may be that the unit he is in at the moment simply don't offer the sort of slower programme he needs, but a different service may be more geared up for this (although I know you said he is now in his third placement). It might be worth talking to the rehab team about this anyway, and they could perhaps arrange for an assessment from another unit? Certainly he will need a good discharge plan to ensure he continues to get support in the longer term.

    We have a booklet called 'Rehabilitation after brain injury' that explains the options and could help you to make the case. If you'd like me to post you a copy, please send a private message on here with your full name and address.

    I do hope this helps, and please let me know if you have any questions.

    Best wishes,

    Headway.

  • Thank you so much,Headway,for your interest and advice and I have messaged you with my address.

    Thank you in advance for the booklet, which I look forward to.

    Regards, cat3

  • I was 18 when it happened to me (Xmas Eve 1987). I actually suffered 3 (1 big, 1on operating table and a small bleed 6 months later). Initially i was in a coma a week and not expected to live so i was about to be placed on the list to be donating organs.

    Back in 1987 not a lot was known and i was in hospital nearly 7 weeks.

    Since i came out ive had to relearn to walk and learn to speak properly.

    25 yrs later ive since trekked 55 miles on Gt Wall of China for Headway. Took part in a World record abseil.

    Anything is possible.

    Im well aware that not everyone can be the same. I was young and extremely fit when it happened to me. Every head injury is as unique as a fingerprint.

    I hope this gives you a bit more encouragment.

    DAVID X

  • Yes,it does give encouragement,David. You are obviously a courageous person with great spirit.

    Geoff was a very dynamic and determined individual but it has been difficult keeping up the hope when, after seven months, he is still so childlike (chewing everything he gets his hands on, and smiling a little too much.)

    However, I am re-energised by the comments from you and everyone else. Thank you so much. cat x

  • Hello - there is always hope. My boyfriend was in hospital after a brain injury last year, and when he was discharged another patient in his ward was being discharged to a nursing home - after 9 months and no progress, was also told that he wouldn't get petter. He couldn't walk, talk or sit up and was minimally aware. When we went back 4 months later, this patient was still in the ward (he had got an extension) and had had a miraculous transformation - he could talk - far from perfect, but could take part in a conversation, was wheeling himself around the ward, and had started to walk with a frame. I don't know what had happened, apart from lots of therapy. So always hope, and make sure he does lots of exercise. I have heard from other people who were told they wouldn't make more improvement too, but it's not always the case.

    Good luck

    Paula

  • Thank you, Paula.....this is exactly the type of story which brings us hope in our particular situation. I know things might not work in Geoff's favour but an account such as yours does give everyone something to hang on to. The talking is key for us.....if he could talk, at least he could communicate his feelings.....his immediate needs.

    I hope your boyfriend is progressing....take care of each other. cat x

  • Hi Cat3, this post only came up in my email box today, 10 months after my problem, so having read yours now, I do hope there has been some progress for Geoff since you posted back then. You are such a good support to others, me included, I hope and wish you and your family are finding your way through it all. Shirley x

  • Hi Shirley. I was quite surprised to see this blog heading reappear but it's so kind of you to ask about Geoff even though it was before your time. Yes it's 18 months now since his SAH and there have been many pitfalls along the way. He has suffered pneumonia & chest infections and, we're told, he is now in the early stages of Parkinson's disease.

    He is in a nursing home where he seems comfortable and the staff seem very caring. But he still doesn't talk & cannot move from his bed, although he interacts with his visitors with enormous smiles, nodding or shaking of the head and some cheeky (rude) gestures, which suggests that his old gregarious personality is still active. He seems, however, totally unaware of his situation with never a hint of displeasure.

    It's so difficult for my daughter and son to have involvement in his care as his present wife is so unwilling to share information which only she is privy to, being next of kin. They did manage to speak to his GP some months ago and he agreed to arrange further speech and physio therapy but this was curtailed for good when the Parkinson's was diagnosed.

    So we are still coming to terms with this but still finding it hard to accept that this larger-than-life, hard working, big hearted guy has had his life halted in this way.

    Thank you again for asking Shirley, it really means a lot. Love Cat xx

  • sorry to see things didn't improve Cat and yes I understand the position your son and daughter find themselves in.

    I think we all find our lives have halted or altered in such sudden and unexpected ways, even though we do try and keep going day by day. Until I researched brain haemorrhage myself on the internet last spring, I genuinely had no idea at all of the complications that can and in most cases do come with a brain injury and its repercussions, no matter the cause of the injury. I will still keep looking in France for better support here than the system can or wants(not) to offer. I currently have an internet friend over here looking into the information that was posted for me from Gordon at the Child Brain Injury Trust.

    Thank God for Headway and the people who seek and give help and advice on the posts; S x x

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