Hey all. I wonder if you good folks can help me with a dilemma.
I have a 11-year old half-sister. She was born with down’s syndrome (as my mother was in her 40s when my sister was born), and they suspected autism too, which has been since confirmed. This means, as you might imagine, that she’s very different from other kids and needs a lot of attention.
It means that to those who aren’t prepared for it, she’s a lot to handle. She doesn’t speak, but has a hell of a shouting voice, which she uses frequently. She still requires nappy changes. She’s quite destructive and noisy. She likes music, and is always trying to turn the sound up on the music player, throwing things around (including very heavy things, at other people), jumping on furniture, and pulling hair, glasses and other things. She’s a lot to handle in shops, as she has a habit of trying to grab everything on the stalls and hangers, and she has quite a reach, given her age.
It’s especially difficult as she doesn’t socialise, given her autism. As I said, she loves music, but she has no interest in interacting with others, and will pull hair and glasses and other things. She dislikes cuddling or most physical interaction.
Now, I love my little sister a lot, but I have to acknowledge I would find it near impossible to have her around constantly, and I am amazed my mother’s managed it so well. But this weekend she told me that she’s made a will stating that everything she and my stepdad have, on their death, will go to my sister – nothing for me. I’m completely okay with this.
What I wasn’t sure about, however, was her intention that if they were both to die, they want my sister to stay in the house by herself and be looked after by carers, instead of being taken to a dedicated home. I confess I don’t know much about how this all works, but from what I’ve been told, if she’s in the house alone, she’d not be looked after 24/7 and anything could happen to her – the carers might be neglectful, or might not show up at all. I live on the other side of London from them because of work, so it wouldn’t be possible for me to see her regularly.
Is my mum being sensible with this plan? Or am I being naive in thinking a ‘home’ (if that’s what it is called) is better than her being in her own house? Is there an alternative?
My mum seems pretty dead-set on this approach, and while not a religious man at all, I wouldn’t want the first thing I do upon her death to be overturning her wishes. Like I said, I have no interest in getting any of the will.
Sorry for the long post. TL;DR: is it better to have a down’s child in their own home or in a caring facility?