Living with learning-disabled sibling who is disruptive at night

Carers' health and wellbeing
1

I live with my 62 year old father and 33 year old disabled (physical and learning difficulty) sister. My sister had an extended stay in hospital earlier this year, and has been using a hospital bed in our living room since coming home over four months ago.

My dad is my sister’s primary care giver, however she attends a day center three times a week (previously Monday-Friday; re-integration has been gradual) and carers attend three times a day to assist in hoisting her in and out of bed into her wheelchair, and for cleanliness routines.

Our main issue is that my sister’s sleeping routine is absolutely awful since returning home, and after four months, shows no sign of improvement. She wakes up several times per night and absolutely screams the house down, until my dad is woken from the sofa he now sleeps on downstairs and provides the arbitrary request that she calls out for. These vary from “HELP!”, “I’m crying”, “Tears in my eyes”, “Can’t sleep”, “Something else (on TV)”, “Too hot”, “Too cold”, to plain old blood-curdling screams, and she is incredibly loud.

There is no reasoning with her, and she is intelligent enough to know how to manipulate her behaviour in to waking my dad (and ergo everyone else in the house) up, for the attention she calls out for.

She doesn’t seem to be in discomfort, as she is very good in communicating that, but this insistent behaviour continues and is absolutely wrecking our sleeping patterns.

I’m not sure if I’m asking for advice in what services are available, or seeking validation that this isn’t normal or sustainable behaviour to live with. My mental health is suffering, I’m constantly exhausted and it’s affecting my performance at work.

A care home seems extreme and would be very difficult to come to terms with on a personal level, however what other options are really available?

2

First, some background on me. My son was brain damaged at birth, some things are badly affected, he can’t read, write, or do any maths, but he can do other things normally. Fortunately he is fit and healthy but after 16 years without a child free day, my health was ruined forever and my GP told Social Services he must become a boarder at school. After residential college and a lovely residential home, until the management changed, he now lives in a privately rented flat with carer support. I’ve chaired several special needs charities, organised play schemes and supported many parents locally.

Your sister should never have been sent home like this!
It’s a recipe for disaster and only a matter of time before dad, unable to sleep in his own bed, gets very ill leaving you with two to care for! Neither of you are getting any decent sleep. Her needs are so high that she needs 24/7 care.
Has your sister had an NHS Continuing Healthcare Assessment? It should have been done before discharge, involving dad.
A bit more background would be helpful, about what she was like before hospital admission, why she was admitted, and what consultation there was with you and dad before she was sent home?

It’s important to focus now on what all three of you NEED. Are the LD Health Team supporting you?

3

Hi @Wrighty

Welcome to the forum.

this doesn’t sound sustainable for either you or your Dad.

Did your sister sleep in her own bedroom prior to being in hospital? What was her sleep like then?

It sounds as if she has become very institutionalised due to her extended hospital stay and used to there being night staff awake and around at night. Did she enjoy being in hospital or find it traumatic?

Your sister could move into a small group home or a shared house with other people with similar needs. She would need funding for this and it might be part health and part social care funding.