Sister with Down's behaviour deteriorating, I'm caught between our parents not communicating about her provision and finding it v difficult

[Daisy_Fox]

I am an adult with a sister with Down's Syndrome who is 3 years younger than me (also an adult). She still lives at home with my mum and mum's partner, whilst I live a couple of hours away. I am finding it really difficult mentally whenever I come home to visit now due to tensions in the house over my sister's behaviour. She takes money, hides food and alcohol, and just generally doesn't do as she's told by them and basically rules the roost. I know my Dad and Stepmum also find it really tricky, but mum doesn't involve them in any decisions to do with sisters care and sister doesn't spend weekends there anymore because she says she doesn't want to (my suspicion is because she can't do what she wants when there as she does at mums).

I'm really close to my sister, and did a lot of care for her when we were kids due to my mum's own mental health struggles. I'm also close to my mum in our own way, but I don't know if she fully understands how much of a parental role I played in my sister's life when I was a child myself.

Myself, my dad and Stepmum all think that the only way my sister's behaviour will change is for her to be in supported living. She needs a full reset and change of routine, boundaries, new experiences etc. My mum find's this really difficult to process, I know she knows it's the right thing but she isn't moving on the process.

It's got to a point where I don't want to come home and visit because of the atmosphere. Mum's partner is fed up with my sister and her behaviour, and fed up with my mum's lack of action, but he also doesn't have much understanding towards her disability. Today whilst at my mum's, my sister confiding in me that she was kicked out of a local shop for stealing. I don't know whether to tell any of the 4 parental figures in her life because I just don't know what will be done to help

I want to find a way of supporting myself to cope, but also how to start some sort of mediation between everyone involved about what's best for my sister, or maybe tips on how to broach difficult conversations about someone's duty of care/future provision? I know it shouldn't be on me as the sibling but I feel powerless at the moment and not sure how to change things.

[Jofisher]

Hi I would speak to the carers association and a mediation service if you feel that would help. It sounds like your sister needs an assessment of need through adult social services to assess her needs. You could see if your sister is entitled to an advocate from Independent mental capacity advocate who can help support your sister and Mum. Just a few ideas to be getting on with.

[LDAutie]

hi Daisy_Fox im not a parent,im a service user so i dont hhave any answers but it might be worth looking into sibs: sibs.org.uk/support-for-adu... sibs have posted on here a lot asking for peoples questions (set up by mencap)-theyre a charity supporting siblings of disabled people, but jo is spot on as usual. unfortunately the social services are understaffed more than ever right now so it might take a lot of time getting the asesment.

[Eeviee]

Hi there. It sounds like a really tricky situation because unless you can all work together your sisters behaviour will probably deteriorate to the point where an external agency will get involved ie the police or she might become the target of unwanted attention from an undesirable third party. For example , A couple I knew had problems with their daughter and male friends. so I think the sooner you can all sit down and plan for your sisters future the better. I would expect that the plan would involve supported living which will need the input of adult social services so you will need to get in touch with them . The sooner the better as any assessments and recommendations will take a long time. Ie years probably. In the meantime you could try to get a social worker allocated , if there is not one already , who might be able to suggest organisations or departments within social services that might be able to help with your sisters challenging behaviour. Well done you for reaching out. You can be the best advocate for your sister as you are clearly aware of all the issues that need addressing so don’t worry about whether you should get involved or not. As we get older we become aware of our parents limitations and if we can take the lead in certain situations then so be it. It’s not going to be a quick fix though and it sounds like your mother is the key person who needs to understand the importance of giving your sister her independence whilst making sure that she is safe and behaving in a way that does not put her at risk of unwanted consequences. I would speak to a mencap adviser first before contacting social services just so you are clear what is needed and they might be able to advise on how you can all work together in your sisters best interests. Good luck.