ARLD - Decompensated Alcoholic Liver disease

[Neverending_story]

Good afternoon
Long story short - hubby has ARLD - he was given days to live beginning of March as he developed Hepatorenal syndrome twice with decompensated Liver cirrhosis and was sent home with End of life plan and Hospice, he stayed home with carers whilst I went to work (someone needs to pay the bills and put a roof over our heads), he was home for nearly 3 weeks but I could not handle it anymore, he was being stressed, more confused, falling over and thought 'this is the end', he was taken to a Hospice home and still there, they are planning to discharge him home next week.......
What do I do??? What can I expect other than the confusion, jaundice & generally looking after him?
We are trying to source a care package with the NHS through the hospital but the funding is so untasteful it doesn't help him i.e. carers for 2 mins four times a day......he needs more permanent care than this......
Has anyone been placed in a similar situation & I dont know what to do!!
Thank you

[Catkins]

I haven't got personal experience of this but know bits from people I work with (I work for the NHS, predominantly with elderly/complex medical conditions).

I am sure you can request that he shouldn't come home until a care package is in place. Be very clear about what you are able to provide by means of care yourself. I'm not sure exactly what it's called these days, but there is a benefit you can claim to help pay for any care he needs, attendance allowance/care allowance? It might be worth contacting your local CAB to find out about benefits.

Also look into regular respite care so the load on you doesn't get too heavy. Locally here we have an organisation for carers, that help provide information/support for people in our area. There might be some like that in your area?