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!

Yes it definitely sounds like you need to have her registered as a vulnerable adult at risk.

This is so sad to read. I’m the parent of a child with Down Syndrome and can in some ways understand your mother’s reaction when discussing the future, I can’t stand the thought of my child not being with me as no one understands them like I do etc.
But, your sister really should be having annual health checks including blood tests to check for thyroid issues, coeliac disease, diabetes etc
I think if you’re able to you should try to get her to the doctor and also perhaps try to find out if you have a local Down Syndrome support group/charity who would be able to provide you with support and advice. What a tricky situation for you and your family x

Be gentle with your mum. She is faced with what to her is an impossible, appalling situation - that one of her children will not be independent and will not be properly cared for when she dies. That must weigh heavily when she has done everything for your sister up to now. Remember, in your mum's generation, assisted living for people with Down Syndrome was a very different thing - institutionalising and so on. Is it possible she has fears/hang ups about what that kind of care looks like?

You saying you aren't going to be accommodating your sister probably sounds like a very final no to your mum. What are you willing/able to do? If you're able to oversee her care and visit her regularly in supported living, maybe you can say that to your mum, so she isn't just hearing 'we can't help'. Then the conversation has something positive to move on from.

I'm a social worker and a sibling of a person with downs - frankly if my parent's care was as poor as the care you describe, I'd be making a safeguarding referral on the grounds of neglect. Honestly I'd be livid. Don't get me wrong I have enormous sympathy for parent-carers, especially elderly ones, but limiting another human's life chances like this is seriously not okay.

I'd also recommend getting a referral made to the local NHS Community LD team. I work for one and we have psychologists, psychiatrists, OTs, physios, nurses and SLTs.

They should be able to do an holistic assessment so see what professionals can have an impact. Your mum could also do with a carers assessment to see what other support can be put in place. You'd need to contact social services for that.

I know there are horror stories about residential care in the news, but there also many fantastic services out there. I think you probably need to persuade your mum that you need to start "future proofing" now so plans can be made while your mum and sister are able to contribute rather than have an emergency placement forced on them because there's no other choice.

Can you help to support your mum in getting additional help for your sister? Is your mum
concerned that your sister will end up somewhere miles away and she wouldn’t be able to visit?

You need to tell your mum what you will help her with, now and in the future. She’s probably worried you’re going to abandon her.

This was my thought too @Worriedaboutsisterp your mother’s treatment of your sister is neglect. Your sister is fully reliant on her care giver who doesn’t appear to be taking very good care of her if she only bathes weekly, hasn’t visited a dentist in what sounds like 30 years, never sees a gp, has poor nutrition and doesn’t have any external social contact. This has now escalated to pushing which is verging on physical abuse on both sides and could so easily escalate.

Based on what you’ve said I would be concerned about your mother taking drastic steps to avoid your sister out living her, desperate people do desperate things. I would urgently be making a safeguarding referral because this sounds like a really unhealthy situation for both of them, especially if your sister is physically capable of hurting your mother and lacks capacity to understand consequences of her actions.

Sorry, to clarify - when we say we can’t accommodate her, we mean she cannot live with either of us. Obviously not that we would wash our hands of her. My sister and I managed to talk my mom in to making a will, leaving everything to our sister who has DS, with us overseeing it being spent on her needs if that makes sense.
It’s just that she will not be able to physically live with either of us.

I completely agree with you.
How do I make a safeguarding referral and will my mom know I have done it??

Both me and my other sister have tried numerous times to ‘step in’ and make appointments and take her to them etc but my mom shuts it down. Short of physically removing her from my mom, I’m not sure what else we can do.
The only thing I managed to get done for her was a visiting chiropodist to sort out a very painful callous on her foot.

I will do literally all the research and enquiries and everything and I am sure my other sister would help. It’s the trying to convince my mom that she needs to do what’s best for my sister that’s the difficult part. I have began the process of getting a care assessment and I am waiting for them to contact me. I am hoping I can be there when they visit because I don’t trust my mom not to down play it all

I will look in to doing this, thank you

If you type in your council name and contact adult social care, safeguarding. You should find a phone number for your local authority team.

You can remain anonymous but, it be helpful for the allocated social worker to have your input.

OP you have my sympathies. I think you have to report the situation to social services and then cope with the fall out. Your mum sounds like she's totally blocked off the idea that anyone could meet your sister's needs other than her. Her attitude is understandable, but is very unkind to your sister, you and your other sibling. I don't think for a minute your mother is doing it because she wants to hurt your disabled sibling, but the fact remains what she is doing is harmful and it has to be addressed. Your mum might be angry and hurt, but so be it. Your sister needs her horizon's widening and to receive proper care.

I have seen middle aged people with LD absolutely thrive upon moving to supported living, sometimes after the death of a parent who has controlled and restricted them. A safeguarding referral might be the way to go as the LA will have a duty to follow up.

I'm with you - sorry, it's hard to give advice when you don't know everything that is going on. It sounds like you are very engaged and proactive so definitely keep pushing for those referrals. I hope for your sister's sake you find a solution x

Hi op some brilliant advice here especially around diet /living arrangements.
I would strongly urge you to make sure you whatever happens that you and your siblings can retain control over her money.

This is something else that we need to sort out as at the moment, her PIP gets paid directly to my mom’s bank account. She has full control over it.

What you must avoid at all costs is her money being controlled by the state. So so random care worker gets to decide what she spends her money on.

I hate to say it but it does sound like your sister is being neglected.

Even if she doesn't want to move out, things need to change.

I know it's out of love but your mum needs someone from the outside to speak to her. Make her see sense.

I would urgently contact adult services and say what you've said there...

For people lacking capacity for a lot of decisions - any decision must be taken in the 'best interests' of the client.

Clearly a lonely, bored young woman with a very elderly mum, needs stimulation, good diet and a life. It's not good enough just to keep her alive,! She needs a life worth living doesn't she...?

An obvious and major issue here, is that neither of them will most likely have any idea what a future life could 'look like', then the default will be thr status quo...

I'd phone social services and follow it up with a bullet point letter... As factual as possible...

I'd outline what a day looks like for your sister.

Her current health..

How her social needs are (not) being met...

Your mums advancing age and not wanting to think about the pressing issue...

Clearly state NOW that there is no possibility of either sibling caring for her should your mum become incapacitated/die.

Ask for an urgent meeting...

I'd mention phrases like... Best interests, (unethical for state to leave her in this situation!), also query whether this is an adult safeguardinf issue..
Also talk re imminent /likely carer breakdown (your mum)

Good luck... It's a horrid situation..

I've known of several sad cases where adult people with LD have had to have emergency placements wherever they could be found when the elderly parent suddenly died /became suddenly incapacitated... It was very distressing for everyone.

A distressing case where One adult son with pretty bad LD was sectioned and led out in handcuffs from the family home where he's lived for 55 years when his mum had a skddent stroke and couldnt care for him.

Hideous.

Would have been so much better had plans been put in place.

As well as getting your mum to write a will, you should also persuade her to take out power of attorney for you and your sister, so that if your mum becomes incapacitated , you can access her finances to help care for your DS sister and make decisions for her welfare.

@Worriedaboutsisterp I don't think you'd necessarily be able to get power of attorney over your sister, as she has probably never had capacity to grant it. You need to be looking at a deputyship. https://www.gov.uk/become-deputy

I'm sorry, I have a younger brother with severe learning disabilities. Thankfully he's not quite sufficient enough to need a deputy, but he does have an appointee for his benefits. It seems that the deputy route is a lot of commitment, but given the responsibilities and power it is understandable that there is oversight.