Hi was wondering what sort of support you all get .
I have a 3 year old daughter and don’t seem to get any . Weather it’s official or family/friends.
All of his friends other than one don’t seem to bother with him anymore . And his family are non existent.
Xx
It is so difficult isn't it. I think a lot of people just don't know what to do or to say so they do nothing which is no help at all. Have you tried 'Care for the Carers', they have lots of things going on where you can meet up with others in the same position as you. Also Adult Social Care should be able to put you in touch with coffee mornings, etc for carers. Don't become isolated, there is help out there, unfortunately you have to find it.
Adult social care pulled out as soon as he came home . He has little support from therapists .
Thats nice and sometimes friends can find it hardest cos u lose everthing u had in common. Does he go to headway? It good place for advice but also he still very soon and will get better.
We are in the process of getting him in to headway . He came home in August and took us along time to try and get any support for him and us x
The lack of aftercare is a common legacy of brain injury. I had a brain haemorrhage 6 years ago and was pretty shocked, after two months of round the clock hospital care, to find myself back home with only family for support, though I did have a 3 month recall appointment and subsequent MRIs.
After a while, once you can walk and feed yourself friends consider you 'better'. Most people don't grasp the invisible nature of brain injury symptoms. For medical support I asked for a re-referral to my neuro-consultant who I waited almost a year to see and who I now see every 12 months !
But you have to be pro-active in finding everyday support I'm afraid ; the health service is so overstretched, so it won't be freely offered. I hope your man can manage to get to Headway meetings where he'll be in the company of people who really understand his issues.
And Jan's suggestion of 'Care For The Carers' is well worth worth a try.......
Cat x
Unfortunately it is rather a postcode lottery, and equally people do fall through the gaps as you where.
What sort of support if any are you getting at the moment? It is difficult sometimes to find how and where to get support in the NHS not helped by GP’s being rather hit and miss, for myself I have benefited hugely from my Local Headway who also suggested and helped me get back in the system for rehab see rogermerriman.co.uk for longer waffling about my head!
Hi roger . He went to a behaviour unit for 3 months as his behaviour was irratic , since he’s came home he gets maybe 2 hours a week and his therapist take him for a walk . I want to get him more behaviour and cognitive therapy. As well as seeing the psychologist agen .
We are in touch with headways and are waiting a social care assessment for funding x
Hi I'm also a carer for my partner who had a brain injury in 2015,i have a son who is 4. We had very little support from anyone until this year, when we got in touch with headway.
Hi kaz it’s hard work isn’t it with a little one as well. He does have therapy from the local rehab services but they take him for walks and don’t work on his behaviour ect which we have found to be his worse problem x
I dont get any support beside verbal support and i have a non existent family and dont really have many friends despite my various attempts at socialising
Unfortunally there is next to no support for people with BI. Headway being the only one in UK. In Rotherham area where I used to live they were not that good. They would plan things then cancel if not enough people were interested. No idea what it’s like round other areas. I moved to East Yorkshire last year and heard about a local BI group someone with BI had set up so started going there and can’t praise them enough. Luckily for me I don’t have problems with stuff that most people have I just wanted to get to know more people so going there has helped. As well as getting to know more people the man who set the group up started giving me personal training towards end of this year so I’m now aiming to be able to run 10k in April.
Since going there it’s made me realise how lucky I’ve been. I had to learn how to walk again after BI that took a few week, bit of short term memory loss but at side of most people that’s nothing. There is woman who goes to the group been in wheelchair years and just got back walking a few month back and now having problems with her leg so back in wheelchair, another woman used to play rugby before BI and not been able to run since cos it gives her headaches. She’s wanting personal training with me but up to now not able to do it. Actually feel sorry for both of them as it’s clear they both want to do more than they are able to. I’m just impatient wanting to manage everything at once, but at least even the times I struggle with personal training are cos anyone would and I can work to improve that. There are a few men who go to group who can run more than me but not getting any help so I’m probably at best stage where I can get help and able to do bits.
Hi there we are 15 months into my husbands bi. We have a local nhs bi team that my husband gets limited support through he is about to see a private neuropsychologist in the new year. Unless you make the effort to reach out for support I have found it doesn't make itself known which is such a shame! For yourself it might be worth requesting an appointment with the mental health nurse at your surgery..for me this was the best desicion I made! I now have support starting for me in the new year and our 2 young children will be getting external support as well as they now have a completely new daddy to adjust to, one who either sleeps or shouts! It's been extremely difficult for them both and myself but I am finally hopeful that we are going to start getting the support we so desperately need. It's so important that you get support for you..in some ways it's the most important thing as you are now ultimately responsible for your husband and your child and so keeping yourself above water is imperative. Keep talking on here and message me anytime 
Your daughter might still be a bit young but my boys both found elvin the elephant who forgets and my dad makes the best boats 2 children books about brain injury. Also for you to read James cracknell touching distance and brain injury a practical guide by Trevor Powell are both books I couldn't have done without.
Take care of yourself xx
You should contact your GP. Ask if they can be of help. Maybe put you in contact with other Carers or support organisations.
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