Sister with Downs Syndrome becoming aggressive

[Worriedaboutsisterp]

livid that I have just typed out a huge post and the screen refreshed and it got deleted!!

Anyway, name changed for this as it’s outing.
My sister has DS and lives with my elderly mother who is not in the best of health. She does nothing with her and I feel like my sister’s cognitive health has began to decline. She is starting to develop some strange habits she has never had before and has started becoming angry and even aggressive when she is unhappy about something. I witnessed this myself the other day and her and my mother were physically pushing each other around.

My mother buries her head in the sand about my sister’s future. She thinks if anything happens to her, that my sister would just come and live with me or my other sibling. We have categorically said we would not accept this and my mother just gets upset and shuts the conversation down.

I have contacted the council about getting a care assessment done. Mainly for my sister’s benefit as she never gets taken out anywhere and spends most of the day alone in her room watching TV. But also because I need to know what accommodation options there are for her.

Has anyone got any experience with this?? What options are available for her to move out and live independently? She cannot do most things for herself. Can’t run a bath or sort her own shower and my mother only baths her once a week!

Sorry in advance for long response and q's.

Like others have said this would fall under safeguarding a vulnerable adult.

Your sister needs an assessment under the Care Act. It should be your sister who is asked whether she would like this and if she refuses or your mum refuses access there are ways the local authority can intervene through using the Mental Capacity Act if necessary.

Do you know if your mum is deputy for health and welfare for your sister? It sounds as if she is not acting in your sister's best interests by refusing help or refusing to address the inevitable. It is something we see all the time when working with families in similar situations.

In cases where it is needed they can go to Court to ask for the powers to remove a person to a safe place such as a care home, obviously this is likely to be more distressing so they will need to evidence they have tried or risks would need to be severe enough for action to be taken without attempts first, and they'd need to evidence why they believe your mum isn't acting in your sisters best interests.

Social services would also likely call a professionals meeting / safeguarding meeting to discuss risks/develop a plan with GP / LD team and social care and to ensure agencies are sharing info.

if your sister became very unwell / was putting herself or others at risk the mental health act could be used.

I'd also be seeing if she has been under the care if the LD nursing team, like others have said they can provided support and education to your sister and mum and would work alongside a social worker. As well as helping to get the necessary health checks done for your sister.

It is likely the first thing offered would be a support package in the community, this could be a way to get support going in the home or for your sister to start going out with someone.

As your sister has PIP it is likely she'd need to contribute to the cost of social care. Do you know if your mum has a separate bank account for your sister? Do you know if she is using the money for your sister's needs/wants or keeping it herself or saving it up? Does your mum receive carers allowance?

Another thing would be for a carers assessment to be offered for your mum.

Have you spoken to a charity like Mencap for support/ advice?

There was a recent case where a woman with Downs's Syndrome died as a result of severe neglect, it is a tough read due to the nature of what happened but the serious case review highlights learning points/best practice, and you could mention this if you struggle to get anywhere with the local authority:

www.blackpoolsafeguarding.org.uk/assets/uploads/Adult%20V%20SAR%20Learning%20Brief%20final%20280323.pdf

There isn’t a ‘register’ as such - you need to make a safeguarding referral to adult social care for the physical shoving if nothing else. The enquiry will take into account immediate risks as well as your sister’s longer term needs and wishes. Although she has Downs and maybe the onset of dementia, she may have mental capacity to decide on her living and care arrangements , so just don’t expect that adult social care can go marching in and make your sister move or accept care. FYI - unless your mum has DWP appointeeship or power of attorney, she doesn’t have any legal right to make decisions on behalf of your sister

Well I can tell you what happened with my family. My sibling had a social worker who visited and I emailed social services regularly to tell them the true situation. Right up til the day mum died I was giving updates. When mum died social services sorted for carers to visit four times a day, but wanted my sibling to stay in the house. The house had not been left to them in the will, luckily, as it would have been incredibly sad and unsafe for them to live alone like that. On top of stroke, epilepsy and an LD 5th also have a tendency to set fires. I badgered social services relentlessly about finding somewhere for my sibling to live and after a couple of weeks they had a very bad fall and ended up in hospital. They stayed in hospital until a place in a lovely home was found. Moved there and have been the happiest I’ve ever seen.

I used to have sleepless nights for decades worrying about this, but with hindsight there was nothing I could have done differently to have changed the outcome. Social services would have moved them years ago, but had neither the will nor the power to do so while both mum and sibling were alive. So do what you can but don’t let the worry take you over. And on no account agree that your sibling lives with you unless this is what you want to happen.

Like pps have said I wouldn’t jump to dementia in a 42 year old. My aunt had Down’s syndrome and lived with us after my grandma (her mum) died so I grew up with her. She developed dementia in her mid 50s and died at 60.

Are there any daycare type centres that she could attend? My aunt went to one during the week - it was almost like school - for adults with a variety of physical and learning disabilities - and she really loved it. A bus would come to collect her, she had friends, they did activities, learned life skills. Sounds like that kind of thing could be a lifeline for her.

I meant you need power of attorney for your mother- everyone should have one in place in case of incapacity. You can do it online yourself- costs about £80, which means if your mum had a sudden stroke or got dementia herself then you would have access to your mums finances.

Thank you so much everyone for the replies. You have been so helpful!

I will definitely look in to all of these options that have been suggested.