Page 3 | Sister with Downs Syndrome becoming aggressive

Worriedaboutsisterp · 2024-11-16T17:13:14+00:00

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!

Terrribletwos · 16/11/2024 17:46

@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.

Original poster

Worriedaboutsisterp · 16/11/2024 17:36

Also - she is 42

OP posts:

Original poster

Worriedaboutsisterp · 16/11/2024 17:36

mitogoshigg · 16/11/2024 17:29

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.

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

OP posts:

Original poster

Worriedaboutsisterp · 16/11/2024 17:34

MargaretThursday · 16/11/2024 17:29

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 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

OP posts:

mitogoshigg · 16/11/2024 17:29

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.

MargaretThursday · 16/11/2024 17:29

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.