His physio is coming along really well, however his cognitive skills are not.I've been told that he may have to be assessed and moved elsewhere as they are worried that the more mobile he becomes, the more he is likely to wander off and become a danger to himself. I'm conscious that the unit he is in is the only one of its kind in this county, so am very concerned that he may be moved to a nursing home or similar, where he wont receive any therapy. Does anybody else have experience of this and know what I might expect or what my rights are?
We are not married and were not living together as such so I have no legal right to determine his future, however his family (brother and sister) do not live nearby and have not given any indication that they will help with this. I'm really all he has to fight his corner.
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fred59
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Thank you for your question, I am very sorry to hear of the situation with your partner, but pleased to hear about his good physical recovery.
If there are no similar units nearby and there is a sound medical case for further rehabilitation, the medical team should be able to refer him to another unit out of the area. Basically medical need should come first, so hopefully if he needs more rehab a more suitable place can be found.
It might be helpful to call our helpline to discuss things in more detail - they can have a look into other rehabilitation units and send you some information that should help you, as well as referring you to your local Headway service for support. As his partner your opinions should be taken into account, so the more information you have the better.
You can contact us on 0808 800 2244 or helpline@headway.org.uk
I hope some of our members can post some of their personal experiences below too.
My Jake was moved out of county to get the right rehab support under the named patient programme, so hopefully your partner can receive the same level of support.
With regards to his family; have you tried reaching out to them? My experience is that they will be so grateful that you are staying involved that they will absolutely back you.
Thats kind of what worries me. If he's moved out of county, how could I visit, and who else would bother. At the moment I visit every day as I have been signed off work but that won't be for too much longer. I think he needs a familiar person around to keep the memories alive, but I know his family wont be there. A sister who hasnt been in touch since he left intensive care 5 weeks ago, and a brother who lives abroad.
Can I ask - which county did Jake go to?
Thank you for your reply
Fred (perhaps I should change this to Freda-forgot I registered under his nickname!)
Jake went to Glenside in Salisbury and I visited him on Wednesdays and brought him home on Friday afternoons until Monday mornings.
I had the exact same concerns as you as previously I was off work and visited him every day, sometimes twice. What I found when he moved was that he was able to properly focus on his job on the days we were apart and that the time we had together was better for it.
It is also worth remembering that if you set the expectation that you are available all the time now, you will need to both overcome changing that expectation later. Trust me, long term you will both need time for yourselves if you are to stay sane and together!
That's a good point about visiting, although I wouldn't like to be unable to visit at all, and being in Cornwall facilities are few and far between. I expect he will have to be moved eventually though, so i'm trying to be prepared. At least in my head. I have to agree that it is good to have a break from daily visits. I had a bad cold this week so didn't go for two days. He seemed extremely bright and cheerful when I eventually got there, with good reports from the therapists.
My family are in Dorset/Hampshire so not close enough to be around all the time, but they have been visiting in relays. I'm relying on friends for backup at the moment because my son and daughter + respective families can't be expected to be here indefinitely.
Is Glenside a private unit? Salisbury would be great if I still lived in Poole - but then my life would have taken a different path if that was the case I guess.
7 weeks in is very early days, so try not to panic too much. And if he is starting to get mobile now that is very positive. I would suspect then that he would not be moved to a nursing home, as that tends to be for patients who are not at all mobile, and not able to do much/any of their personal care.
My boyfriend Richard was in hospital for 8 months last year, and was moved out of our local hospital to a regional rehab unit, but I still managed to visit every day. And the unit he went to was so much better for him and he made much more progress than he would have done elsewhere. But I do understand your anxiety, it's a tricky balance between prioritising recovery and regular visits.
We were also not living together at the time, but I didn't find legal rights a problem. As I was the person who visited the most I was consulted on all decisions, and by default became next of kin, so the hospital really shouldn't be putting up any barriers to including you in his future.
Cognition deficits are more difficult to overcome than physical. I find brain training a good idea - try lumosity.com where you can play 3 games for free every day. Obviously this might not be possible in hospital with no wifi, but any puzzles can help.
Good luck, and try not to panic too much, everyone involved in his care will want him to recover.
Thanks Paula. Thats really helpful. I was just surprised that they are talking about moving him so soon when I was initially told that he would be a long term patient. They mentioned last week that as his cognitive skills arent improving that he may need 24 hour care elsewhere. Seems too soon to be saying that. Everything is scary at the moment as I'm sure you know.
Hi fred59. Gosh how your last statement really resounded with me - everything is scary at the moment, but as Pazstan has stated, it is very early on. Now I don't know if this will help in any way, but here are my experiences.
My son suffered a hypoxic brain injury three and a half years ago where he went without oxygen for over 10 minutes. This occurred in a hospital that was in a different county from where we lived. When he was 'well enough' he made the 250 mile journey back home to a rehab unit here, instead of going to one that was local to the hospital where the brain injury occurred. I felt, probably as you do, that familiar faces and places and love were equally as important in his recovery as the rest of the therapy that goes with an injury of this sort. After about a year I was told that the time had come for him to leave the rehab unit and there was talk of him going into a local nursing type home. I was horrified as I felt that he would not receive the right sort of support that he (to me anyway) so desperately needed.
Instead of just sitting back and taking what I was told would happen I began checking out what else was available. It was by doing this I found out about BIRT, the Brain Injury Rehabilitation Trust. The BIRT unit I found that was in my opinion the best was one in Goole in Yorkshire, a mere 371 miles from where I live. I had to make a choice, what was best for my son. I decided that although it would be impossible for me to visit that often, I would always be there to love and care for him; but the opportunity for him to get the best rehab he could in the early stages after his injury would not always be there.
The decision, from what I gathered, is to do with funding and this is up to your local PCT (at least it was for me). I think I was quite fortunate inasmuchas when I was told where he was going to be sent to I objected strongly and told the rehab hospital where I wanted him to go. They then passed on my comments to the PCT and eventually a decision was made. Fortunately for us all my choice was accepted and my son continued his rehab in Goole. It really was a life-saver and he came on in leaps and bounds in the 10 months he was there. It was well worth all the pain of not being able to see him that often. Following on he is now in another BIRT unit, but this time closer to home - just a mere 120 miles - so I can see him more often. And now finally, after being in one hospital/rehab unit after another for three and a half years, he will be discharged in about 37 days, and he's counting
I suppose what I am saying is not just to accept what is being offered, talk to whoever is in charge of his proposed discharge and see what they can offer, discuss alternatives and try to find out what else is around that is close to you. Whatever you do, good luck. It is early days, and I can relate to what you are going through. Good luck, and take care
Thank you-I'm so glad I found this site! It does sound as if you have to fight for a fair deal though. Some people have mentioned that I should be dealing with a social worker, or at least that he should have one assigned. Is this something that you did?
I'm sure you cant wait for your son to return home....I hope all goes well for you.
I've just read your post regarding your son's brain hypoxia and you really gave me hope. My boyfriend who is 22, suffered brain hypoxia due to a drug overdose. He has been in hospital for 5 months tomorrow, and he is still in bed but responds to many commands and he really puts an effort to everything. he recognizes familiar voices especially mine and his mother's. Now he's going to rehab very soon! He lost around 10-12 minutes of oxygen.. Do you have any recommendations if you do not mind???
Hi Sabrina. I think your reply came to me by mistake...did you mean to send to Charlie's nan? My partner has a hypoxic brain injury (not my son). He was in rehab for a year and came home just over a year ago. Whilst not as able as he was he has come a long way. Main problem is his memory which is sometimes as short as minutes. I think Charlie's Nans son had a much better outcome from what I gathered.
Sorry I don't even know what I'm doing. He's my boyfriend not my son .. I miss him terribly and I don't know if its possible to continue our relationship..that kills me.. If you don't mind, did your partner loose a lot of oxygen?.. And was he in vegetative state? How is he now? Can u be in a rel with him? sorry for all d questions it feels like I'm dying slowly without him
I know how you're feeling. It's such a difficult time isn't it. My partner lost a lot of oxygen and had numerous cardiac arrests. He wasn't expected to survive and was in a coma for a while. It took months for him to reach the stage he's at now. He thought I was his sister, talked complete rubbish, had no idea where he lived etc, etc. It is now over two years and he's home. He no longer talks nonsense, remembers who everyone is..including me (!). I have to say though that the relationship is more of friend/carer now. He has support workers with him all week because he didn't recover well enough to take care of himself. Mainly due to his short term memory issues. I'm sure you've been told that all brain injuries are different and that they can't predict an outcome. I would say it's far too soon to know how your boyfriend will recover and do try to stay positive. I've seen some amazing recoveries, and heard of lots on this site.
So he is still with the nappy and tracheostomy? How is his speech and mobility? ... My boyfriend tries to communicate a lot he makes sounds like 'aaaa' ... He tries to say simple words like yes/no but doesn't seem to control them..
No, he came off those a long time ago. I think you're reading my old posts. He can get about although he's slow, can't drive sadly. His speech is ok, not as good as it was, but he does make sense now. You'll probably see a lot of gradual changes over time. Have you put a general post on here? I expect you'll get lots of replies that will help you. Lots of people who have come through with pretty good recoveries post on here and I think they're doing a lot better than my partner!
Having said his recovery isn't brilliant, we have just come back from Turkey, and he enjoyed that. Main thing for him, as I've said, is that he doesn't hold new memories very well, so will only remember what we've done when I show him photos.
How did his speech start then? That's all I want, to be with him.. If he could just talk and understand ! And how long did it take for him to be 100% alert?
It's going back a bit but his speech after the tracheostomy was removed was just mumbled nonsense. Then he would start coming out with strange comments, such as he was planning to rearrange all the boxes on the wall....? Boxes? What boxes? It was months before he made any real sense. Once he became mobile he used to pack all his belongings ready to come home, only for me to put them all back when I visited him. That stage seemed to go on for ever! I can't say exactly when he became more lucid, it was very gradual. He often used to tell me his dad had visited (his dad died some years ago). Apparently it's called confabulating. Now he can talk ok, but doesn't ever make decisions, and is quite childlike. They told me if he hadn't fully recovered after two years I wouldn't see much change from then on, but you have a long way to go yet! Hold on and try to be positive.
They told me he would never be able to speak, walk, eat again... they aren't helping me at all!! now he's going to rehab even though they do not really want him, but then we're also going to take him to a private rehab which is really expensive.. So your partner, he was completely vegetative?? if you do not wish to answer its okay I fully understand, but it's hard to have hope that he'll be back when he barely moves.. he makes eye contact and turns his head when i talk to him... what can I do to enhance his speech ?
He was in a coma and from the tests they told me that he would be in a vegetative state and it would be kinder to stop his palliative care. He then started to respond slowly so they kept up with the care and were quite shocked at how he started to improve. Could you not ask for funding for the private rehab? My partner was in private care for seven months, funded by PCT.
Still early days and it sounds positve! When it first happened to my husband(TBI) he was taken out of intensive care and was and put on another ward although he was very confused .It was supposed to be 24 hour care but unfortunately he ended up hurting himself badly (falling). I did push to get him transfered closer to home and he was put on a general stroke ward where he was very unhappy (although safe) but we all agreed he was better at home (this was about 10 weeks later). He needed to be watched 24 hours a day as you never knew what he was going to do (razor in mouth instead of toothbrush etc). I was fortunate that i had my sons to help but it would be hard on your own. He did come on fantastic at home and i took every bit of help i could get , although you have to fight for it! Do you have a social worker? if not push for one, mine was a good help and the nurse from headway was brilliant and i got my own little 'fighting team' together! Go off your gut feel and do what you think is the best thing as after all you know him best! A year down the line my husband has improved amazingly! Good luck with your fight!
That all sounds familiar- my partner was moved to a stroke ward for two weeks and although the staff were pleasant enough they didnt seem remotely aware of how to deal with him. I have been approached about having him at home but I couldnt give the 24 hour care in my current situation. I really dont want him to feel abandoned though. Im sure its too early in his recovery to be thinking of discharge - but as your husband was home within 10 weeks maybe I have that wrong. I was told initially that it would be a minimum of 6 months. How did you go about getting a social worker on the case? Did your husband lose his cognitive skills? .....sorry so many questions in my head, dont know where to start!!
yes- I thought your situation seemed similar but he was getting very depressed in the stroke ward and we felt he would give up hope hence the Neurologist said he would be better at home . When it first happened I thought(and was given the impression by the hospital) this is it for life as it was all so negative! When i took him home he was still in the post trauma
stage( i found out later )which can go on for months . He lost all cognittive skills and had to be retaught, didnt know his name, couldnt read or write or feed himself and acted like he was in dream .It took time but things gradually came back, not to the same extent as before but a good 85%(he is 14 months down the road). the hospital should be giving you a nominated social worker and you should be in touch with an ABI team,occupational therapists, physio's ,speech therapists. The Headway nurse pointed me in the right direction and came to meetings with me (beyond the call of duty)! I was a bit like 'a dog with a bone' and pushed for everything especially the speech therapist. After 6 months I enrolled him on Adult literacy and Maths courses, which really helped and made him go everywhere to practice speech ,using money etc . They will try and palm you off as funds are limited but SHOUT! it works. Anything else I can help you with just ask- I've been there and know how you are feeling
PS (I went away last weekend with the girls and he made
hotpot(with a crust!!) and washed my sons work whites-how's that for hope?)
I would love to be able to bring him home but that just wouldn't work as he is at the moment, and I couldn't give full time care in any case. I'm interested in your comment about a headway nurse....?
He already has OT and Physio. His physical condition improves daily - although he has an underlying heart problem just to add to the mix...I just wonder what I should be looking for in terms of cognitive skills. Did you see a gradual daily change or were there plateaus followed by sudden improvements? I think perhaps I expect too much too soon, but not knowing what is "normal" or common means I struggle with it. He will talk complete nonsense sometimes, then asks me if I want a lift home or want him to cook dinner. Doesnt believe he's in hospital....and so on.
However I do like your story and it sounds very hopeful. Just hope we have a similar result. I think I need to develop a pushier nature, my problem is I get too emotional and then cant get my point across.
Thanks for taking the time to listen. Hope the hotpot was a success!
I got in touch with headway and they gave me the phone number of their nurse/liaison (doesnt actually 'nurse' but is trained and can give advice) and was a great asset.
With regard to the cognitive skills- it was slow (but everything was slow for me anyway!) but he will get there. Initially Ian couldnt read and write and we had to relearn him from basic childrens books, he just basically didnt know where he was in his mind but looking back i think he was still in basic recovery.
Like i said before i was lucky, I have my sons who live at home but it would be hard on your own. Ian also came out with sensible things then in the next breath rubbish. 14 months down the line i cannot beleive the difference and how the brain can adjust. Ian was and still is a positive person and i think that made a major difference to recovery, what is your partners general personality like?
I would look at the rehab they are offering and research it and get the opinion of the headway liaison nurse as they will know what else there is.Any news of a social worker?
I know it's horrible at the moment and like living a nightmare (why us? etc) but it will get better !
Just re-reading some of the messages and realised I didnt reply to you. The latest thing I was told was that they are thinking of finding a "care in the community" placement as his physical health, reading, writing and so on are reasonable. Debatable in my opinion! He has little to no short term memory so would be a danger to himself if he was sent home. If I could afford to give up work I would try to care for him myself, but that isnt an option.
Care in the community does not sound like something that would improve his memory, so I have asked them to consider a BIRT unit 100 miles from here, and they are looking into that. It still feels like i'm abandoning him though, and I would only be able to visit at weekends if he goes that far away.
I mentioned at the hospital about a social worker, and they didnt understand why he would need one. What was it that yours did for you? My main worry- next to his health- is how his bills are being paid,and trying to get benefits for him. They dont make it easy do they!!
I would phone phone headway and ask to meet your local HATS nurse, who will have no doubt been party to this situation before and can advise.Phone social services yourself as the social worker i got helped fight my partners corner and sorted out any benefits due(DLA after 3 months). I found the care in the community sadly lacking and if that was all my partner had to rely on he wouldnt have come as far as he has-it consisted of occupational therapists coming the odd hour and drinking tea and asking how he felt-all words no action!The speech therapist/physio was good though! I would push for the BIRT unit as he would get far more out of that than the other option, but you have to be very strong as in my view they just wanted the bed back and to offload responsibilty on to another department.
To be honest my partner didnt remember much about the first six months of recovery and the first year of recovery is the most crucial.Ian's short term memory was bad but it has come back at about 90% so hopefully over the next few months you will see these changes and more!
At the discharge meeting there were 9 people all discussing my husband and i phrased the question "where will you lot be in 6 months?"and i was right as we only see one of them just over a year down the line.!
It is very easy to get lost in the system and just accept what is said and go with it, as you get tired of the hassle. You know he is still not able to make decisions, so cause waves if need be ,as you are the crucial most important person in his life. Best of luck-stay strong! It does get better its still early days
Recovery from a TBI is very slow, but it *can* happen.
I had my TBI in July 2005. I have no memory of anything before going to a pantomime at Christmas, with my daughter. My husband had booked a 'disabled' seat, as when he booked it, I needed a wheelchair. On the day, he had to keep telling me "Sit down in the damned wheelchair, we have been given special seats!", as I refused to use it, as I didn't need it anymore. My memory was still bad, for months. The rehab hospital discharged me slowly, 6-8 months after my accident (going home for weekends, then going home overnight during the week, then only going in for a couple of appointments a week, then one a month...).
I was off work for 18 months, but I was very lucky, and they kept the job open, and let me go back, eventually.
I think (hope?) I am still recovering - I still see minor (although slow!) improvements. I am officially blind (I would say 'partially sighted, but hey, as the doctors call it blind, I save money on bus fares, train fares, TV license...), I have dodgy balance (which is definitely still improving, though), and I am still missing a couple of years of memory ("A *second* daughter? When did we have a second daughter? Oh, but she is cute. Is she really ours? What d'you mean, we moved house? Where to?"), but although that big chunk is still missing, my normal memory these days is fine.
He couldn't come and see me every day, in fact my memory was so bad that he bought a whiteboard, and wrote 'Rob will be here on Friday afternoon", so I always knew when to expect him. He also printed out loads of photos for the walls of my hospital room, of our wedding, our daughters, etc.
So, a TBI takes a long time to recover from, but it *does* happen - not all of it, but definitely some of it. The rehab hospital will have loads and loads of exercises for him to do (physiotherapy, SALT (Speech And Language Therapy), psychology...), and he really will benefit from them. The hospital staff will be happy to advise you about his safety - when (if!) he is ready to be on his own, or ready to go out on his own, etc. (I know I had hospital staff walk me into town, to a cafe, and then allow me to do that on my own...)
Good luck. i hope his recovery goes well. Don't give up!
I'm getting a bit confused as I posted my initial comment over two years ago, but have been getting quite a few messages this week! Has it reappeared somehow? Or was your message for Sabrina?
My partner has been home for a year now but still needs support workers to prompt him for virtually everything. He has virtually no short term memory and I was told that with a hypoxic injury the cells don't regenerate. So I think what we see now is how it's going to stay. He seems to have adapted to living in the here and now but it's not easy as he cant go anywhere on his own.
It's right what they say, every injury is different!
Hi , my brother has hypoxic brain injury and I feel for you , he has been hospitalized since January , his moods change all the time like bipola and he thinks he can drive and blaaa blaaa , he loves doing the dishes and mowing but wonders off down the pub , gives people money, very sad !!!! And no where locked up to put him as he would escape x
Hi. When/how did your brother get his injury? It is very difficult when the person you know so well changes personality to such an extreme. Is he getting support for this?
Hi, I'm so sorry for your situation. I had similar circumstances and have found that a sympathetic social and advocacy rights worker would be a good start. Also you need to ensure you are your partner's appointee for benefits as this can affect how your partner is looked after in a financial respect and of course this pays for hospital and care home fees. You are right that moving them to a care home would not promote or assist with the rehab needs and safety, in terms of vulnerability this is the prime concern. The social worker would work on your partner's behalf and if you could get the psychology and psychiatry team on board in terms of the rehabilitation benefits of remaining in a "fit for purpose" unit, then you could ask the social worker to make a case for this being the best or only place suitable for their needs. If the bed is technically a "hospital bed" and they are looking to move your partner due to them essentially needing a "social care bed" then you need to be able to prove that it would be detrimental to both you and your partner's wellbeing to move them. It would maybe be useful to contact their GP and councillor in order to gain support for your partners case to remain and explain your concerns. It is VITAL that you become the biggest nuisance out in order to protect your loved one. The funding issue is not going to go away, however those who shout loudest often get dealt with quicker! Good luck and I hop it works out for you. x
Hi Fred, I probably did, thanks for getting back to me. I'm getting used to it and while I'm at work I am not thinking about it, but you know what its like when something happens or reminds you and you want to talk to your partner about it and then remember they wont be able to understand. Its hard to get used to no one having your back, but hey, you have just got to get on with it and try and be happy with your lot. Hope things worked out for you. x
Hi. Well I’d like to say things worked out, but I’m currently going through a nightmare with social care....again!! Andy was discharged home after a year in rehab and has had a good package of funded support up until now. I don’t live with him, but I do fill in the gaps of his support. This year they have deemed that he doesn’t need health care and that assistive technology can replace a lot of his 1:1 support. Sometimes I wish I’d never offered my “informal support”. They really take you for granted.
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