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!

Is it possibly Alzheimer's? I believe that people with Down's are particularly susceptible to Alzheimer's, and that can come with an initial change in personality, including aggression.

Yes urgently get the care assessment.

She can move into supported living, it depends a bit on her age but typically they try to place with 2-3 people who have similar capacity and are similar age group (eg if your sister is in her 40's they will aim for late 30's to 50's rather than 25 year olds) and a carer will generally sleep over with more support during the daytime as per the residents individual care plans. The care plan will stipulate a number of 1:1 hours to get her into the community, perhaps volunteering, doing sports etc.

Alternatively theres the option of full residential care, though this tends to be only if they have more reduced capacity or are much older. Or the opposite end if she could cope would be a flat of her own with carers coming in.

As part of her plan, the carers will get her included into local activities for people who are learning disabled eg locally a Christmas ball is being held shortly and all those I know are going, outfits being planned (I know lots here through work). They try to get people to lead the best lives they can

I hope this gives you an idea, it takes a while to get the right placement sometimes because like with any of us, sometimes a household dynamic doesn't work but once that hurdle is achieved it can be a very positive step to move out.

I should add benefits will cover costs and care will be via direct budget from the council but you can help get things sorted by making sure that the relevant paperwork is filed with the court of protection to be able to deal with finances legally, that she has universal credit and pip applied for if she isn't currently claiming (she can claim whilst with your mum and it's far easier to add housing to the existing claim).

Hope this helps, but do have patience, took around 6 months to sort a placement here, and had to move after 10 months as first didn't work out but all is good now for 4 years.

Yes I believe it is, and I have heard they are susceptible. I need to try and convince my mom to get her to see a GP I think

Thank you for this, it is so helpful.

I don’t know too much about her finances but I know she gets the full award of PIP I think?
But even that gets paid straight in to my mom’s bank account rather than hers so I guess we wouldn’t even be able to access it if anything happened to my mom?

I really appreciate the positive story. I need to do a lot of work on my mom to convince her this is the way to go. It’ll be so much better for everyone if she finds her somewhere now rather than when it’s too late

Also - she is 42

@Worriedaboutsisterp Hi, it sounds also that your sister is not getting a lot of help or emotional support, or even stimulation and social activity and she would be possibly better off in a structured, semi independent housing situation. I think things have become too rigid with your mum for your sister, she needs to live independently or as independently as possible for her own sake.

Social services will ask your mother if she wants your sister to continue to live with her. They will ask your sister if she wants to stay living at home. Unless your sister wants to leave home it won’t be pursued by social services. My sibling lived with our mother until death and only then did social services begin to look for somewhere for them to live as the two of them, although unhappy together had become so enmeshed.

At that age it is possible that dementia is starting so I would focus on getting that medical review. There are a lot of other things it could be too.

The living situation is separate and it might be better to keep it that way. If the issue is dementia it might change what the best place for your sister to live would be anyway.

I really feel for you all. I hope your mum can think a bit differently,especially if she is at risk from your sister

Also, I wouldn't be too much focused on the dementia angle. It sounds, to me, like your sister maybe wants a bit more independence (away from being stuck in front of tv) and is crying out for a different life?

Bless her, she's locked in that house every day, all day? That would affect anyone's mental health.

Definitely right to demand she's assigned a social worker, if she doesn't have one already.

There is funding you can apply for that allows the hiring of a TA so they could take her out once a week or so. They could also advise as to local initiatives for work or training placements and independent accommodation companies in the area.

It really sounds like someone needs to step in and get your sister better care. I'm sure your Mum loves her to absolute bits and obviously worries about her future, but in truth your sister's present isn't OK either.

She needs help. Someone in your family needs to step up and fight for her. Funding doesn't always come easily.

Please look into Shared Lives. You will need a care assessment. It is best to do this prior to your mum becoming unable to look after her so there can be a transition period. Dementia particularly Alzheimer's disease is is very likely diagnosis as the link with downs is high and happens at a much younger age than in those without downs. You will need to push social services to help. There should be funding for various support that she probably is not accessing.

sharedlivesplus.org.uk/find-your-local-scheme/

Every local authority has a scheme but you will need an assessed need and a referral.

Hi OP,

Though people with downs syndrome are more likely to get dementia/Alzheimer's much earlier than the general population, I would be wanting to rule out medical issues first. Something as simple as urine infection or constipation can cause behavioural issues in people with learning disabilities. How's her diet? is it limited? Vitamin deficiencies can cause behaviour changes. Does she have an annual Learning Disability Health check at her GP. Anyone over 14 with a learning disability is entitled to one! Does she have thyroid issues (common in people with downs syndrome), if so does she have regular bloods for this and is so, it managed well. Is she seen regularly by a dentist? Would she have the capacity to recognize she feels ill and have the vocab/communication skills to let anyone know this? I would want to get all this checked out before I started mentioning Alzheimer's to professional's!, is she know to the local learning disability health team? They can support with getting health needs met!

And also, yes, and then as others have mentioned, she may well be extremely bored. However, maybe now is the time to starting broaching with your mum plans for the now and the future.

Sorry if any typos, I'm on the middle of cooking dinner!

Your sister sounds very unhappy and, frankly, unwell. She needs to be assessed. She would be far better going to a centre and mixing with others, doing things together, having a social life, etc. It could make her a new person.

However first you need to contact her GP and maybe a health visitor. Also do a bit of research yourself, there are various organisations and charities which can give much information about what is available. Social services may also be helpful, thee are social workers who specialise in people with learning difficulties and other disabilities.

All is not lost, don't immediately jump to an Alzheimer's diagnosis, she could just be lonely and depressed. Wait and see.

Good luck to you.

I just want to add that I know someone quite well who have a Downs syndrome boy of similar age to your sister. He really thrives at the centre he attends, has blossomed since being there. His parents are very pleased with him.

At the end of the day, it doesn’t matter what your mother wants. Its about what best for your sister and her quality of life, she should not be shut up in the house all day.

I am not blaming your mum, I am assuming she is elderly but you should contact adult social care to ask for an assessment for your sister. Its not fair and change is needed.

Unfortunately that’s right. Social services won’t step in unless they’re actually asked to.

I’m a retired learning disability nurse. I have had many clients who had downs syndrome who developed dementia as they got older leading to personality and behavioural change.
Does your sister have a community nurse from the learning disability team? They will be a great support in helping your sister and your family.

This is what I am worried about the most. My sister will absolutely not want to move out. She cannot cope with change as it is. My mom absolutely will not want her to move out either.
So what happens is they carry on as they are until my mom either can’t look after her, or until the day comes that she is no longer here. And then what? She isn’t going to able to move in somewhere suitable literally straight away but she has nowhere to go until then. Neither me nor my other sister can accommodate her

Her diet is very bad. I didn’t realise how bad until recently.
Most lunch times is a microwave sausage roll and dinner is usually a microwave meal (not healthy ones either) or something from the chippy. I cannot remember the last time she went to a GP nor had a general check up and she hasn’t been to a dentist since we were kids.
She wouldn’t have the capacity to say that she feels unwell in the sense of vitamin deficiencies etc, no. You make some very good points.
It’s just so difficult as whenever me and my other sister try and talk to my mom about it, she literally shuts down and ignores us or just cries and shuts down the conversation that way.
The last time I asked her what her plan was for my sister in case anything happened to her, she said “I hope that we die at the same time”
And then refused to discuss it.

I completely agree. My mom is mid 70s and not in great health herself.

UTI can cause aggressive behaviour, does she only get help with any washing once a week?

She will wipe her face with a wet flannel and brush her teeth every morning and that’s it until the weekly shower and hair wash

Well well worth starting to get known by the local LD team. More than anything else it means they have a baseline knowledge of her in terms of if your mother's health becomes at a level she can't cope anymore, so can inform any future planning, plus ruling out things like UTIs or constipation (which can send people's behaviour hugely off baseline) as an initial line of investigation.

It's just worth starting to build that relationship now, rather than having to do it when the shit hits the fan in years to come.

Also checking she's registered on the GP records as having an LD and accessing annual health checks. Plus contacting social services to access anything they're able to offer - something like day service even just a couple of days a week would take some weight off your mum and get your sister out and about to break up her week as well.

Dental check as well if you can access one and if your sister can manage it - or the LD team might have a specialist dentist they can refer on to - but that one's an infuriating postcode lottery (I can refer for half my caseload but the service isn't commissioned in the other area I work in).

Yes, dementia is a consideration with people with Downs Syndrome but it's not the only thing that can lead to behaviour change and it's a case of eliminating the possible causes and working through things.

It's really worrying that she's not having any check ups, could you maybe make her an appointment with the GP and offer to take her? I know you can't take on full time care but this would at least benefit your sister in the short term in case there is anything medical going on