Home after 8 weeks

[HJ10HMO]

Well today the hospital sent my other half home despite Pippa from headway ringing everyone yesterday and advising against it. As far as the hospital is concerned his orthopeadic injuries have healed and they wanted him out. There is an 18 week wait to see a psychologist for assessment and 12 week lead time for any sort of outreach OT work. I had not realised things were so bad for brain damaged people there does not seem to be hardly any funding available for this. So basically just been told we have to cope with it for the next 12 weeks and we are on our own. I have no idea what to expect and have seen many differences in Ians behaviour over the past 8 weeks. Have an appointment for myself with GP tomorrow but will have to drag him along with me. I just wanted to say a huge thank you to Headway for the help and advice they gave me yesterday when i reached the end of my rope with the politics of postcodes that we have fallen in the midst of. Also to say that I will definitely be doing some fund raising for this wonderful charity once things have settled down at home. Thank you so much for keeping me sane in an impossible situation.

[cat3]

Yes HJ I'm afraid things really are that bad and that's why we so badly need this community for the support and comfort we're denied elsewhere.

Remember that your partner's brain injury is healing/improving every minute of every day and what will serve him best will be lots & lots of sleep with gentle exercise in between. Tissue will always heal faster undisturbed, with no work to do.

I hope your Ian will show gradual signs of improvement as the days/weeks pass and as he, himself, starts to grasp the new situation he finds himself in.

All best wishes to you both, Cat x

[MXman]

Morning HJ10,

My Prayers are with you.

I too would like to do some fund raising for Headway but I'm not sure where to start. Giving my local centre a call would be a good start so ill do that today.

God Bless and have a peaceful Friday. Nick Xx

[RogerCMerriman in reply to MXman]

Main headway has various sponsorship challenges, my local headway had recently had a charity ball, and are affiliated with one of the London charity bike rides.

The ball was a hoot, and I'll let you know about the ride after the event!

[MXman in reply to RogerCMerriman]

Thank you Roger, Im over at my local Headway centre on Thursday so ill ask.

[lisa85]

I was very lucky that my accident happened over 11years ago and that Cardiff had the right support for me. I don't live in Cardiff but was sent to itu there and the pen refered to their rehab hospital as there was a bed available, and before headway came along to me I had the CBIT (community brain injury team) helping me along the way.

Wish you the best of luck and see if you can get a social worker that might be able to help with the ot and other things you have to do.

Lisa85 xxx

[moo196]

Hi,

It's an unfortunate situation that many of us have found ourselves in. At least you are on waiting lists - I might be tempted to ring them daily to make sure they know you need them. Is that the neuro community team ? Can headway visit you at home at all ? Not sure what your o/h initial problem was - I certainly overlapped assistance from the Stroke association .... I needed help and support and went through all/ANY route to get it.

It might actually be a blessing that he has to attend GP with you - a chance for you again to make the point that you are waiting for help.

I wonder if some routine might help in the meantime - for me it was crucial ( mind you I live alone so could only argue with myself if I didn't like it ) - get up , take meds, breakfast, showerm rest , stroll, rest , listen to cd story , lunch,, rest, yoga, tv, rest, cook, dinner, bed...... kind of kept that up for several weeks.

Good luck

K

[RogerCMerriman]

It's about as common as heart problems, brain injuries but no where as near funded. So said the Nero doctor we had as talk last headway meeting.

I would say take it one step at a time, is he enjoying home? Ie how is it going?

[HJ10HMO]

So far so good with him being home. I want to introduce him to this site for his own questions and worries as soon as I think he can cope with it. I have absolutely no training in dealing with brain injury so just using my instincts and things I have picked up from reading posts on here. Am making him do things for himself like making a cup of tea and a piece of toast so I know he will be able to cope when i have to go back to work. However also have to stop him from trying to do too much, its a bit of a challenge to try and get it right and i just hope I am doing the correct things. At the moment he is happy to be home and looking at all the familiar things with wonder. Had a bit of a meltdown when the kitten did not come back when called last night, I started letting her out while he was in hospital and he was panicking that she was knocked down or stolen. Silly thing turned up 5 minutes later but his mind went into one thinking that because he came home she left... assume that is normal ABI behaviour to fixate on something that is not really a problem. Had a plasterer round to give me a quote for a little job i want doing this afternoon, he raced me to the door then told the bloke he had to speak to me because he was f***** in the head.

I thank the lord i was born with a good sense of humour and very practicable so i am able to do most things myself. He is slowly coming to terms with the fact that his job as an HGV driver is gone, he will not get a proffesional drivers job again in the foreseeable future so we are going to have to look at some form of retraining if and when he is able to think about work. But because he is a proud man this is not sitting well with him.

I sold his car the day before he came home, which i think is a good thing because he would be tempted to drive it, we discussed it and agreed to sell as he had a loan for it and it is better to pay this off so we are not under financial pressure on top of everything else. He also has a heart problem which i have been concerned about blood thinners because of his 3 brain bleeds after the accident. Only time will tell the extent of the damage and we will just have to take it one day at a time. Thank you all for your comments and support.

[Sem2011 in reply to HJ10HMO]

Hi

I am sorry you and hubby are experiencing the lack of support post discharge, which is all too common. I sustained a TBI five years ago and my partner and I were left to our own devices. I do not remember a great amount for a while, but now I look back and think how hard it was for my partner, and relate it to bringing my first baby home 23 years ago, and not really having a clue and acting on instinct.

Fixation can be a common behaviour in BI. It is hard to explain but it is a all consuming ruminating thought, confusion, unable to cease worrying. My partner says I would need constant reassurance, explaining many times because I had forgotten or unable to process the rationale of my worry ( I have today problems with processing information, but I have improved greatly). I also found it helped me personally to write the answers to my fixation in a book, and could re-read to my hearts content, and it served as a black and white reassurance as conversations were confusing and forgotten. I wonder if this might help your hubby?

As others have said, I would phone everybody and anybody, and it sounds as though you have support from Pippa fro, Headway. Is she able to visit you at home? I know the funding is different in each county but we did receive Headway visits after contacting Adult social care at ESS council. They provided funding. i also overlapped and had input from Stroke association and OTsupport. I am not sure if you have already have this in place, but contacting adult social care, they assess the home for OT adaptations and care package.

I hope this helps. Xx

[Steve49]

Hi.

"OMG" this was me in 1998 !!!!!!!!

I had hoped things would have improved by now !!!!!!!!

Where would we be with out "Headway"

Unfortunately the "NHS " are still desperate for beds !!!!!!!

I was in hospital last week waiting for my procedure to be done.

At one point I was told to go home & wait with a 3" piece off plastic tube in my stomach.

I told them that I'm staying put thank you very much.

If I went home I would never see them again.

Steve.

[moo196]

Hi again - quick note to say might be worth getting in touch with Remploy about work possibilities. My local person was really helpful ( i've heard others not so but culdn't have coped without my guy)..... they deal with getting / keeping people with disabilities/newly disabled people in employment. they may just have some ideas you haven't thought about - and he was very good at knowing the benefits system and thinking of things that I couldn't have known about ( not that I was personally entitled to benefits.

Look them up in your area maybe ?

K