How do you know when someone with brain injury is ok to be left alone?

[Angelia1234]

Its hard hearing the therapy team say Russ needs 24/7 care based on him getting up without his walker a couple times in 2 months. Of course in the nursing home, theres no access to a stove, stairs or wandering off out the door. I spend countless hours with him and all i really notice is he cant recall showers well. I cant leave him there forever but i cant bring him home and be here 24/7.

[mp3mills]

Hello. My husband is a walking, talking, still intelligent survivor but is not safe to be left on his own for more than 5 minutes due to short term memory loss. Five to ten minutes is the longest he can remember anything.

I have survived for the last 14 years by using support workers to either stay with him when I need to go out, or to take him out on the bus (companion bus pass is worth its weight in gold).

As a Carer you are entitled to have a life of your own. This could involve work, adult education, hobbies, voluntary work etc. I was given an invaluable piece of advice and it works well with social services to get exactly what you need. Providing it costs social services less money to support you in your caring role than it would to put your husband in a residential home permanently, and he needs 24/7 supervision, then you say what you are prepared to do and they have to cover the rest.

Good luck!

[Angelia1234 in reply to mp3mills]

Ive had a couple people tell me to file as his full time caregiver. We both need more time to make that decision. I keep prayer he heals enough.

[fred59 in reply to mp3mills]

I’m having a similar problem at the moment. Last year my partner (who I don’t live with, but provide informal support for), was assessed as needing 24 hour care. As you say here, they funded the hours that I said I couldn’t cover. However when it came to this year the respite funding didn’t get paid when I was expecting it. When I called to chase it I was told that a new assessment was needed. They then stopped the respite funding and told me he doesn’t have a health care need, so the 50% contribution currently paid by NHS is going to stop. On top of this social care say that assistive technology should be able to replace some of the 1:1 support. This is coming from someone who has met my partner once, for around 10 minutes. He has no short term memory but they don’t see why this means he isn’t safe to be left alone. He needs prompting for every action or he wouldn’t do anything. Probably wouldn’t even get out of bed. Needs reminding that shower gel is needed rather than standing for a few seconds under a dribble of water. I could go on. Before now we have had lovely understanding social workers, but this year I seem to have been landed with a jobsworth who has been told to cut funding.

My own health is suffering because of all the stress. I had to cancel two holidays because of the lack of respite funds and then had to virtually beg for funding in order to visit my brother who was in a hospice, and subsequently passed away.

This week we have a meeting to work out his new support plan. I’m dreading it!

[Angelia1234 in reply to fred59]

Oh boy. This is my fear. Even if i find help once hes home, what happens when the funding/programs stop. And yes, very stressful so who takes care of us after we have a nervous breakdown?.

[fred59 in reply to Angelia1234]

I guess in your case there is still a long way to go before you know his possible outcome. You could see a vast improvement so 24 hour care won’t be needed. I’ve heard a lot of positive stories on here, just think my partner was one of the unlucky ones.