Independent living with support

[Loveblue123]

Hello, my 33 year old son sustained a TBI in a motorbike accident just over 2 years ago. After a spell in ICU and a neurorehab unit he returned to live with me and his dad. He is under the care of our community neurorehab team and a neuropsychologist but his progress has plateaued over the last months. He has been unable to return to paid employment due to difficulties with short term memory loss, executive function, fatigue, pain/mobility/ dexterity, depression/ptsd and overwhelming sensory overload particularly with noise. He is lonely but struggles to meet up with friends, he wonders why anyone would want to be his friend. He feels that he needs to move out of the family home to make more progress as he feels like he would try to do more for himself if he was living alone and he feels like he needs his own space which I completely understand. His neuropsychologist supports this but preferably in sort of supported living environment, she referred him to Adult Care Services. A social worker has visited to assess how much support he needs but says that there is no supported living accommodation in this area for people over the age of 25 or under the age of 55 ... this seems like a massive gap, surely he can't be the only person in this situation! Social worker recommends registering for council housing and employing our own support worker/ PA via direct payments from the council. It can take 3 or 4 years to get council housing so we have been looking at private rentals but they are massively expensive and his only income is UC and PIP. We came across a nearby supported living place whilst googling but it is for people with mental health difficulties rather than brain injury. He would probably qualify due to his depression/ PTSD but I'm unsure that this would be the right environment for him as I got the impression from them that it can be noisy as a lot of the people staying there have issues with drugs/alcohol abuse and often 'kick off'. On the plus side there is 24/7 support on hand. My son prefers the private rental option but I worry he would be isolated and it may not be financially possible. I think he would agree to the supported living though if it meant he could move out sooner.I'm sorry for the long message but wondered if any of you can share any advice/experience of either of these options . I desperately want to do my best to ensure the right support for my son to help him gain more independence.

[TreesMTBI]

Hello Loveblue123, I’m sorry about your son and this situation you all find yourselves in. I just wanted to respond for moral support, I don’t unfortunately have any answers. But I’m in a similar position as your son, as in back living with parents, feeling a bit isolated etc, although not as affected as him and not yet looking for independence as too many other issues going on.

What a wonderfully supportive mother you are to try and get him where he wants to be.

I hope you find a solution that works for him and you his parents, soon, it does seem there are considerable gaps in the options available to this age group everywhere.

All the very best to you all.

Tx

[Loveblue123 in reply to TreesMTBI]

Thank you so much for your lovely caring response, it made me tearful but in a good way!I really hope you are getting the support you need and wish you the very best xx

[TreesMTBI in reply to Loveblue123]

Oh yes I am very fortunate. I too have very supportive wonderful parents who go through so much themselves, making sure I am okay. Remember to take care of yourself x

[TreesMTBI in reply to TreesMTBI]

Your post has reminded me to check in with my parents to make sure they are doing okay too. X

[cat3]

Hi Loveblue. This may be a pretty drastic option but I'm wondering if you're in a position to modify your own living arrangements so your son can remain at home but more independently.

In a very different scenario to yours, my god-daughter has worried for years about her dad's chronic health issues and his refusal to move in with her and her family.

But this year he's agreed to the move, since she and her husband have agreed to extend their home (a modest house but with sufficient ground for an extension) to provide decent sized accommodation with it's own entrance.

I just heard today that this plan is going ahead and it reminded me of your predicament. 🤔

Cat, x

[Loveblue123 in reply to cat3]

Thank you for the suggestion Cat, an extension would be a possibility. I will chat with my son about it xx