Anyone experienced brain injury rehab?

[arvia2023]

Has anyone had a family member in brain injury rehabilitation?

My DH is now in rehab after a few months in acute care. I am finding managing the medical side like a full time job with lots of phone calls from the team on issues and not a lot of rehab. I feel like my DH is disappearing into the system. I just want him home but he seems to be going backwards since he arrived there.

I work full time and have a lot of financial pressures to work through in additional to being a parent. Its becoming increasingly difficult to cope with the load.

Would be good if anyone can relate or provide me with any advice or insight on how to navigate the NHS system and survive an ongoing trauma.

I didn't directly deal with it, but my dad was in rehabilitation for a while after a stroke and I know my mum felt the same as you and found it really frustrating and difficult. Have they given you any idea about when he might be able to start looking at coming home?

Mine has a progressive, degenerative disease. The system seems to be set up assuming the people using it are older and retired. My best advice to you is to seek out a carers charity in your area. Make demands on social services; your earned income should not be taken into account when means testing. Every time there is a disability-related expense document it. Your dh should be being an equal parent and partner. If their disability prevents this demand help.

Oh, and make appointments at your convenience.

I think it depends on the place. My friend had Covid which caused massive strokes. She's very young (mid thirties) so she got some great care at the Royal Hospital for Neuro Disability. She had to wait quite a while to go there from a normal hospital where the help was zero. She had fantastic physio, OT, speech and language etc. It was really amazing and she made big improvements. She was then moved to a more local centre after a few months, which was pretty dire. It felt like a nursing home, though it was supposed to be rehab. She got so depressed there after just under a year we got her out and back home (she had not been home for 2 years).

The home care isn't great from a rehab point of view but at least she is at home with her kids and continuing to make physical improvements. She can't walk or talk but she points and communicates. Her husband has given up work to take care of her and the kids (2 young ones and a teen) and they are waiting on housing. It's very very challenging.

I think there is a lot more she could have in terms of better communication devices and much more physio (currently only once a week) but they are just not available. Her husband does research on various devices to help her muscles and has bought some of them. She can now stand with a Sara Steady and is very determined to walk.

I don't really know all the hoops that had to be jumped through but English is not her husband's first language so it must have been difficult. Good luck and I hope your husband can make some major leaps forward.

Just to add, there is a point where the NHS swap the funding to the local authority. This is usually at the point where they don't need medical care. At this point it's easier to get them out because obviously it's v expensive for the LA to pay for rehab and home care is cheaper.