Rehab discharge- what happens now?

[worriedmumof3]

Hi, my 24yr old son suffered a tbi in August 2012 and i was told to prepare for the worst. Thankfully the worst didnt happen and we still have him. He is unable to communicate, has limited movement in his limbs and is totally dependant, but has always recognised us. The last couple of months he has been in rehab unit and lately has become much more aware, smiling at us and trying to talk. We can now hear his voice when he laughs! I was informed on Friday that he will be discharged in the next few weeks - he has just started to make progress?? Has anyone been in this position? Any advice would be greatly appreciated as I am totally lost. Thank you

[Pazstan]

Do you think he is ready to leave rehab yet? If not, you can always ask for an extension, citing reasoned arguments about why you think he should stay, but I don't know how likely you are to get it.

He will need a comprehensive care package and community therapy, and the hospital should be working with a social worker to put all this in place. It is available, but how much you get depends on where you live. As your son still requires a lot of help seek assurances that the community therapy will be ongoing, and not just last a few weeks. Ask for a carers assessment, I'm not sure if you are working, but if you are and want to stay working you should be able to, but hopefully you will be able to make that choice.

Has an OT visited your home? Have the necessary adaptations been made? They should have thought thoroughly about this before agreeing to discharge your son.

I panicked when my boyfriend left hospital after 8 months last year, but things are much better than I thought they would be and they get a bit easier all the time.

Things that have made it easier:

We have a support worker for 8 hours a week, who takes my boyfriend to swimming and the gym, so I know that he is going out while I am at work

We have support from an organisation called Family Mosaic, who fill in all the benefits forms/do appeals etc

Both of the above was organised by our social worker, so find out who yours is, and don't be afraid to ask for whatever help you need. I am amazed how much help is out there!

Also is there a Headway Support Group and day centre near you? If so go to the support group now, and get your son on the waiting list for the day centre (the hospital should do this)

Be positive - people do make much better than anticipated recoveries from brain injury, it can take a very long time. Life can still be good, if quite different to what you expected!

good luck

Paula

[Lubilu01]

My Dad had a catastrophic SAH last August, we were also told to prepare for the worst. He too is in a rehabilitation unit, unable to speak or walk. Recently we were told he had reached a plateau, not making any more progress, and there wasn't much more they could do so he would be sent home. I was shocked to be honest but then started to think if he was in a familiar environment then maybe he might make a bit more progress. However, he has now developed a problem swallowing (eating was the one thing he has been able to do for quite some time, with assistance) but now he is to stay in rehab for a while longer and then will need 24 hour care so they are talking about a nursing home. I don't know what to think, the thought of my dad in a nursing home is unthinkable but looking pretty necessary. Dads wife had been all set to have the adaptations done, a bed and wheelchair where on order and she had made the front living room into a bedroom but she has now been told he won't be coming home.

I wish you and your son all the best and hopefully he will benefit from being in familiar surroundings with his family xx

[worriedmumof3 in reply to Lubilu01]

Hi there and thank you for your reply. I am soo against my son going to a nursing home, he is 24 and I feel it would be like we are giving up on him, however if they told me it was in his best interests then I would have to go with it. But for now, I am going to fight for the adaptations to bring him home and try to keep strong and positive, which I am sure you are aware is not easy! I hope things work out for your dad, take care, cate x

[headwayuk Partner Headway]

Hi worriedmumof3,

Thank you for your enquiry, and I am pleased to hear of the progress your son is making.

The rehabilitation unit should be looking to put a full discharge plan in place at this stage. This should include identifying and commissioning any continuing rehabilitation and support he might need after he leaves his current placement.

Now might be a good time to ask for a meeting between the family and the rehab team to discuss these next steps. It does sound like he will need continuing professional support at this stage, so do make sure you put forward all your concerns and don't accept a discharge until you are confident adequate support is in place.

We publish two booklets that might be useful here - 'Rehabilitation after brain injury' and 'Caring for someone with a brain injury' are full of information that could help you to understand the options and make sure your son gets the best possible support. If you would like me to post these to you, please send me your full name and address in private message on here (click our username then the 'send a message' button on the left).

Can I also suggest you contact our helpline on 0808 800 2244 or [e-mail]. They will be able to talk through all the options with you and guide to to appropriate sources of support. This includes your local Headway group or branch, who may be able to provide more guidance, support and information. The helpline could also post out the booklets mentioned above.

We look forward to hearing from you,

Best wishes,

Headway.

[ncmurphy1951]

this is very difficfult more so for you his mum time to be honest and ask yourself is he well enough to be discharged a burden on you he will be but as a parent i would do anything for my children as my father would do for me but from what you have described this smacks of the nhs making a bed free and saving costs a tough decision but your sons well being is paramount here neil

[ncmurphy1951]

i totallly concur with headways usual excellent advice when i came close to being dscharged a full meeting of family called and my needs discussed at length after the 4th of these i was discharged

[worriedmumof3]

Hi Neil, thank you for your responding. I have a meeting on tuesday to discuss next step, because he is medically stable and no longer "acute" they want him discharged (he is taking up a bed), options are home with continuing health care or a care home. He is totally dependant and receives his nutrition and 5 times a day meds through a stomach peg, i know this will be hard times for my family (my youngest daughter is 8) but i have no option but to bring my boy home. I have a wonderful strong family and a wonderful son whose recovery i pray will continue, i am not expecting 100% but any % will improve his life. My next fight is going to be with social services as they want to scrimp on adaptations that are needed but bring it on - thats my boy and he fought for his life and now its my turn to fight for him to have the best one he can. I sound really strong when i have just read this back but to be honest it has taken ages to type because i keep crying. Got my strong head back on - thanks again Neil take care of yourself, Cate x

[NJH11]

Worriedmumof3

Good luck with the meeting (tomorrow?) when my husband was discharged it was as headway described and was all part of an agreed plan. Has anyone come to your home to see what needs to be adapted etc? My husband came home in stages, first for a few hours and then overnight etc. I understand that this may be different for your son. When I read your last message I had to respond to give you some hope. You will continue to see improvements and each small thing will be amazing. You do sound really strong but please take some time for you.....you will continue to need to dip into your emotional reserves so keep them topped up!

I also say don't make decisions based on emotions take time to be logical too....so whatever decision is agreed is not cast in stone either.

Whatever you decide we are all here to listen and help if we can

Take care xx