being discharged from rehabilitation after TBI

[Maychristine]

hi guys back again,

just reaching out for some advice on being discharged from rehabilitation unit.

my dad had a TBI in June , he is been in hospital ever since. He is currently in a level 1 rehabilitation unit, he has been there 3 months.

after a meeting with his therapy team, they have said that he will be discharged as he is not meeting any ‘goals’. He is unable to understand and his cognitive abilities are poor. Although we slightly disagree with this.

he will need 24/7 care. And that will mean full time care at home or going to a care home. We do not know what to do. We want him to come home but worried this is impossible with having to have changes the home and giving up work to care for him. Financially, how will this work ?

we fear that a care home will be horrible for him. I personally feel that he will not ever make progress in a care home as it will not be suited to his needs, more just basic care without rehabilitation. Also my dad is only 50 !

any one have any advice on what to do?

A lot of friends, family and the rehabilitation team at his hospital are saying he needs to go to a care home. I feel like this is giving up on him. I have so much hope that he will get better, even just a little bit. And I feel being at home will also aid his progress, by being in his familiar surroundings with his family.

I guess I’m just disappointed that things didn’t work out as we hoped. That the rehabilitation would work and he would be better.

Thank you x

[Oppo24]

hi MayChristine, so sorry to hear about your dad. It must be very difficult for you. Before making any decisions try to see whether it would be possible for example to take perhaps a 6 month sabbatical from work, or to work from home, so you could be there to help your dad. You can also then see what financial help might be available to assist. There will be things and help you can apply for. I agree that your dad would find being at home much easier and his recovery would be much more likely to progress at home. He will need time but with love and support he should start to improve. Best of luck

[Dvorak]

A friend of mine who is physically disabled following a TBI in 2019 and has some cognition issues lives in a specialist care home for neurodisability and buys in extra OT. It is not cheap but has helped.

[Kentcarer in reply to Dvorak]

I have had this experience with my 66 year old partner. It’s very difficult. I looked at having him home and got planning permission and quotes for the house and care costs then realised with great pain it wasn’t feasible. He needed nurses on hand. You need an assessment of his needs to help evaluate if you can have him at home. and you must try to get NHS funding for his future care although this is hard to get it means your money can be used on extra private physio or other services which the NHS cannot provide of for which there are massive waiting lists. We didn’t get it but I’m going to have another go. We have a good nursing home although it’s 40 mins away from me there’s nothing else locally that’s good. I go 5 times a week. One of the biggest shocks to me was the lack of NHS help for him. They can take the view ‘he’s had his go’ Join your localJeadway group and get recommendations for private neurophysio people and the support and experience of people who have been down this very difficult road. I wish you and your dad well.

[Nanapal]

Hello Maychristine, I understand your deep concern for your dad and making what is right decision for him. I hope you get a lot of advice and support with making that decision - take on board all sides what your dad would want, medical, social services, family, friends and people’s insight from this forum.

Our then 38 year old son needed 24 hour care following his cardiac arrest and subsequent hypoxia brain injury which resulted in various medical needs apart from very complex physical ones. We researched and were also given a list of care homes that could possibly meet his needs in our area North East of England - we visited all ‘4’ of them. Having to accept coming home wasn’t an option (medical needs) we channelled everything into getting the best environment for him. After a lengthy minefield battle with CHC ( Continuing Healthcare) we eventually got a place in a lovely care home which yes does have elderly residents but also has separate rehabilitation units - ours is Headway accredited. Staff are very experienced in dealing with complex needs which we thought essential as caring and understanding of someone with the effects of a brain injury is totally different from nursing/caring/rehabilitation of say an elderly resident with dementia or nursing care. Our son’s home have their own physios, Speech & language therapist, dietician, regular visits from local GP etc. Is it perfect - no as it isn’t ‘home’ but it is perfect for our sons needs. Maybe a similar care home might be available in your area which could be right for your dads needs at the moment with the aim of getting him back home with you.

Whichever decision you come to regarding your dads next step I wish your dad the very best with his recovery. Take care Nanapal. x

[Maychristine in reply to Nanapal]

thank you so much your reply was so helpful!

We have spoken to headway about the situation and they have given us the names of some local headway approved care homes. But it all depends on funding and if he gets approval for funding! Xx

[Nanapal in reply to Maychristine]

You are very welcome. I don’t know if you have already been advised but a Continuing Healthcare Decision Support Checklist ( information available on NHS website)is I believe first step in deeming if CHC funding maybe granted. In our sons case full funding was given after this checklist was discussed in a meeting (zoom in our case due to COVID) which consisted of representatives of his care in rehabilitation hospital, social worker, CHC caseworker and us. Unfortunately getting a suitable care home placement was where we encountered a lengthy battle with CHC . If you have time you may want to read back over some of my posts relating to that and helpful advice & replies from this forum I was given at the time. Hopefully the process is much easier for you and your family. As Nafnaf87 said you may need to fight to achieve what you want for your dad - we certainly had to for our son.

Best wishes Nanapal. x

[Maychristine in reply to Nanapal]

thank you,

We have had a CHC also over zoom to assess dad and he did not approve for funding ! Which we cannot understand why. Since speaking to headway they also disagree and told us to reapply and they are helping with the progress, so hopefully it goes well this time. We have looked at a local care home online that headway suggests and although I did not like the idea of a care home for dad, it looks amazing, so we are really hoping to approve for the funding . I have been in touch with our local mp a few months ago for some help . So I am hoping maybe she can help again (apparently she works closely with headway) xxx

[Maychristine in reply to Nanapal]

We will definitely fight for him all the way. We have had to in the past to get him a place in the level 1 rehabilitation unit that he is now in

[Nafnaf87]

Good morning Maychristine

Fight for what your father AND you family NEED and want.

Do not accept anything you don't think is right, 6 months total including 3 months rehab is nothing. The biggest problem is time annd it is the only asset that works, it allows the body AND the Brain to do their own work on their own schedule. In truth the medical people (neuro this, that and the other) have little idea what to do, the Brain is so complex.

Your father is only 50, I was only 32 (now 57), and I am still on the train. Because they fixed up the broken knees so I could walk, and I could wipe my own bottom basically I got abandoned, Covid came along after 20 years and I got abandoned some more by my family and also by every NGO I could think of. 3 years further on I have managed to get some input from the local Brain Injury Service which has been helpful, however they are probably going to try to withdraw again.

So, FIGHT, draw in everybody you can think of including your own MP. It may also be worth a letter to Chris Bryant MP who is currently steering his Aquired Brain Injury bill through The Commons.

Good luck and best wishes

Michael

[skydivesurvivor]

suffered tbi in 2000, spent 6 months in hospitals. 3 months in the Wolfson rehab, then home to husband, he couldn’t handle the changes in me. To be fair am now a different person to his wife?! Parental care helped me greatly, soo much to relearn!! When I became aware? Spent 22 years makeing, redefining the new me. A hard journey for all!!! Learnt to smile to spite adversity!! Family love is a wonderful thing, hope you all find your way, peace. Please visit this site whenever u need support, have found it immensely supportive tough times ahead for sure!! Wishing u well.

[Hidden in reply to skydivesurvivor]

Hello. Not much to add to what other people have said apart from my own experience. My husband was in hospital with a TBI for 3 months, then in a rehab unit level1 for another 3 months, 6 months in a rehab 2 and 4 months in a small rehab centre nearer home. He was discharged home from hospital last March. We did get CHC funding which has now been withdrawn.

It is very expensive to have 24 hour carers in your own home plus other expenses. Certainly explore the NHS neuro pathway for more rehab and the CHC route for care home or your own home.

It is very tiring and draining to care for your loved one at home even with 24 hour carers. On the other hand you can enjoy any little bit of progress and you can help with their recovery through your love.

All the best

[Maychristine]

thank you all for your responses been super helpful!!

We have been to a local headway centre and they are now helping us . Hopefully dad can get funding to go to a rehabilitation care home that is close to us! Then one day in the future we hope he will be well enough to come home xx