Steve's discharge from Neuro rehab after TBI

[Alico2112]

Hello peeps,

Is there anyone out there who has had experience of discharge from Neuro Rehab following a TBI? My son is 33 and has been in rehab since last March. His latest discharge date is mid April and up till now I havn't been able to find a nursing home in Somerset that isn't primarily for the elderly/dementia.

I would love to have him back home but the rehab centre have advised a nursing home. I'm still undecided and from the homes I have seen so far I'm not inclined to put my son in a place where he will just stagnate. He needs plently of stimulation to progress. Any info/advice will be very welcomed.

[Alico2112]

I should also mention that Steve does not have any behavioural problems, he is very laid back and always smiling or laughing. He loves jokes and is usually very helpful where he can be with his personal care etc.

[cat3]

Just my personal opinion Alico but if you'd be happy to care for your son at home I think it would offer him a far better quality of life than a care home.

It depends on whether you have (or can provide) any extra facilities needed and whether you have the time and energy to see to his needs on a long-term basis.

I've had recent experience of relatives in care homes which have received excellent reports and where the staff are visibly well engaged with the residents. However, I've seen no evidence of stimulating activities, but these are elderly people with few needs apart from the most basic.

Only you can judge what level of care your son needs and whether or not you're equipped practically and physically to provide it but, if it were me and I felt capable, I'd bring him home.

Have you thought of phoning the Headway helpline for advice and more detailed information. The number is 0808 800 2244 and it's staffed from 9am-5pm Mon-Fri.

Good luck with this Amico and all best wishes. Cat x

[Alico2112 in reply to cat3]

Thanks Cat for your reply, I'm sure I could care for him with an added care package in place. I would also be able to manage his weekly routine to ensure he received the right levels of stimulants & rest. I feel he would also benefit being around family. I did call Headway a few days ago & they are going to liaise with his rehab centre before coming back to me. I'm just worried they will decide a nursing home is the better option & it will be taken out of my hands.

[gj124]

I was in hospital/rehab for over a year. My husbsband fought to get me home for pretty much the same reasons. I am only 50.

I came home with a care package of 4 visits per day. The care company have been very supportive and helpful, the carers have been fab. Fortunately the garage had already been converted into another room and this became my downstairs bedroom. It hasn't been easy but I feel I have come on loads since I came home.

Hope this helps. If u have any specific questions please go ahead.

[Elenor3]

Hi prior time my own tbi, I worked in a large number of special schools, day care & nursing homes in the Somerset area. But despite the great services provided by the centres I visited, with recent personal experience of Bi - I'd choose home care with family over a care home if a care package and the practicalities were in place. As previous respondents have said, go to Headway for further advice. Wishing you all the very best of luck

[Sweet-pea]

My sister came home after 6 months of rehab. She has 3 carers per day and it works well the majority of the time. Just when carers are sick or on holiday it tends to go wrong with no one turning up or someone arriving not understanding what to do. But 99% of the time it's fine. My sister was 52 when she had her brain aneurysm and that was now 3 years ago. Even though she hasn't moved forward a huge amount I think she is much better being at home with her family around her for support.

I would fight for your son be at home.

[lrose08831]

My husband was in a neuro rehab unit but all the other residents were significantly worse than he was and it actually had a detrimental effect on his recovery they wanted him to move to another unit but I fought to get him home as I knew he would progress better in his own environment. You know your son and you'll know what's best for him. L x

[Susan65]

Hi Alico,

Such a confusing and unsettling time for you, and I'm sure it's hard to know what to do for the best. Just a thought but if your son is still making progress in rehab are they able to extend the period? My son has been in rehab for 2 yrs now. He does have challenging behaviour at times since his TBI but there is also no doubt that he is still benefiting from rehab and making progress.

He's 3hrs away from us, but probably where he needs to be at the moment.

I live in Devon so can understand how hard it is to find somewhere suitable down here.

I know with my son's situation it's a case of standing firm with them and refusing to let him be moved until they suggest somewhere that can really meet his needs. Easier said than done at times though I know!

Try not to feel too rushed into making a decision.

Wishing you all the best in your search.

Susan xx

[Alico2112 in reply to Susan65]

Thank you for your response Susan. It must be hard at times for you being 3 hours away from your son, I know I find it hard being just 1 hour away but like you I know that he is where he needs to be and to be honest if that place was in another country we would find a way to make it happen wouldn't we. Steve's dad & sister live in Cornwall so they have a 2 hour journey to visit him.

The centre where Steve is have already moved his discharge date a few times now as he slowly continues to progress. The centre only has 10 beds and funding is quite low, I just hope that lack of funds is not what determines whether Steve stays a little longer. I will fight for him to be where he needs to be after all I organised getting him flown from Krabi in Thailand to Bangkok on a private plane with medics as soon as I found out he had been attacked & left for dead on the side of the road on Christmas Eve 2014.

Just as I made my last post I was feeling very low, I've gone down with a horrible virus that has wiped me out for the last 12 days. This has been a tough year and I'm thinking of taking up yoga to help the stress levels. I havn't been able to see my son for the last 12 days which is also hard but I do know he is very well cared for and I can call them anytime to see if he is ok. Steve still can't speak yet so I can't talk to him on the phone.

It really helps to talk to people who have gone through or going through the same things so thank you again.

Ali xxx

[Elkay_1954]

Hi Ali. My son, now 31, also sustained a severe brain injury in Nov. 2013. Coma for two weeks. Unconscious for six weeks then four months in neuro unit. I fought to get him OUT as, although he initially made wonderful steps forward, was 'stalling' and pretty unhappy. He also has type 1 diabetes and they just couldn't give him the time I thought he needed to get well and make progress. He was walking by the time we left but had major problems and certainly couldn't look after himself in any way. We have a good family and friends network and taking him home was, at that time, the best thing we could have done for him. He has spent the last two years continuing to progress - and last week moved back in with his old house mates (now that's another whole load of anxiety and a later post on this wonderful site I think..). We have continued to 'stimulate the pants off' him whenever possible - recognising the essential down time in between of course. He attends a local community woodwork course - driving himself to his appointment each week, goes out with his friends. It's taken a long while and I know it's still going to be a long time until he is anything like the man he wants to be but he'll get there. Your son sounds like he has a lot of love and support around him. I hope you find a solution that suits you all - and fight for that care package if you think you can cope! X

[Flumptious]

I was in the rehab hospital until 7 or 8 months after my accident. It happened in July 2005, and the first time I went home overnight was at Christmas. (I didn't know the house - I had no memory of moving there, or of having our second baby, who was 14 months by then. Mind you, I was having difficulty believing she was mine, as I had (and still have) no memory of that second pregnancy!).

The rehab hospital sent me home for weekends, after that, but I was back in all week. Then I slept at home, but went in during the day. Then, it was only two days a week, then it was a couple of times a month, then once every few months. So, they *eased* me out, giving myself, and Mr Flump, time to adapt to it. 18 months after the accident, the guys at the rehab place held a meeting with some senior guys from work, to say "Look, give her a *chance* to come back...". I didn't realise how bad I still was at the time, but I have definitely come on loads in the years since I went back!

When I first came home, while I was off work sick, our girls were still in nursery, and we kept them there. I wasn't really safe to look after them, myself, for ages!

So, I was at home, alone during the day, for maybe 9 months. On the days when the girls weren't at nursery, we had to have a nanny person come around, but while the girls were at nursery, and Mr Flump was at work, I was alone - which was boring as hell, but I was safe enough.

I guess it depends on how safe your son will be, and what activities there will be - he will need things to do, and he will probably need people to do things with him, or take him places. I assume he can't drive (I still can't!). There might be things he can do, locally, but it depends where he is, and how far it is away from ... the library, the shops, the swimming pool...

[Hopefull22]

Glad your son will hopefully improve. Our son who is 34yrs had TBI in 2020. It happened the first day of lockdown. You can imagine not being able to see him for months. At first we wondered why did they bring him back, he has said that himself. As life is no longer the same for him. Frustration is a very big factor. I don’t think it’s easy for anyone to understand let alone the person with TBI. My advice would be for him not to be in hospital or a care facility, as they are just institutions at the end of the day. Our son had much more get up and when we him eventually got home. But the support was poor and we struggle as a family ( even being a medical family and our son was too). Mental Health Services are extremely poor in our area, pill pushing lot, your just a number. With all due respect people need to be treated as an individual. They only see them after their brain injury not that they were person before.

In our case if the doctors had listened to our son and my husband and respected them as people and their colleagues. We wouldn’t be struggling now.😔