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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be worried about what the future holds for my sister (who has down' s syndrome)

49 replies

Worriedaboutsisterp · 11/04/2018 11:32

I have nc for this

I have a sister who has down' s syndrome. She is in her mid 30s. She still lives with my mother who is in her early 70s. My sister has never been taught to look after herself. She cannot even run herself a bath let alone cook or clean. I am aware that many people who have DS are more than capable of a higher level of independence and I do believe that my sister has never been given this chance as she has had everything done for her.

My mother smokes (in the house) and has a very unhealthy lifestyle. This also means that my sister has a very unhealthy lifestyle too. They don't exercise, their diet is terrible and my sister doesn't even go for regular dentist check ups. She was born with heart problems and gets asked to attend medicals every year to check on her health. Sometimes, my mother will just leave if she feels she has been waiting too long and takes my sister with her.
My sister rarely gets to socialise with other people. She couldn't go out without my mother anyway but she spends pretty much all day in her bedroom with her curtains drawn watching tv. It shows when we try to speak to her - she will often look at my mother to answer for her. She did used to go to a centre every day for adults with disabilities but thanks to funding cuts this stopped a couple of years ago.

Both myself and my other sister have tried to talk to my mother several times about this but it always ends the same way - with my mother in tears unwilling to have a proper conversation about it. Recently, my sister had her PIP increased thanks to the new mobility portion payment of the payment and I suggested to my mother that she use that money to take my sister out more and get her involved in more activities etc but she hasn't listened to me. We can't even invite my sister out without my mother as she gets incredibly offended and gets upset with us.

Now I know my mother wont be around forever. My father lives on another continent and has all but washed his hands of the issue. I am scared for what will happen when my mother does eventually pass away. My other sister and I have both said that the sale of my mother's house could pay for her care but I don't even know exactly what sort of care would be available to her. And it transpires that my mother hasn't even written a will. And who knows if my mother may end up needing that sort of care herself one day and need to sell her house for that reason!

I am the youngest sibling myself and over the years we have tried to address this issue many time but to no avail. I'm really not sure exactly what to do next!

OP posts:
Spaghettijumper · 11/04/2018 11:36

You could contact the Down Syndrome Association for some advice and perhaps get in contact with other people in a similar situation? www.downs-syndrome.org.uk/?gclid=EAIaIQobChMI_qmP_4Ky2gIVC53tCh3R1wMPEAAYASAAEgJ-pfD_BwE

You could also contact Social Services but I'm not confident they'll do much as your sister is being cared for and isn't in danger. They may give you advice as to what's available though.

TheDinosaurRoars · 11/04/2018 11:41

That sounds a really difficult and worrying situation for you.

Are there things your sister would enjoy doing that your mum might not, so you could invite them both safe in the knowledge your mum will probably decline?

I wonder if your mum cries when you try to talk to her because she feels guilty of how your sister is and maybe she feels that she should have or could have done more to change her lifestyle and enable her to be more independent. I don’t know how you have approached the conversations with your mum but do you think explaining that you all work together and help each other to help your sister would work? Alternatively, being quite brutal and telling her exactly how awful your sister’s life might be after she dies if she doesn’t try to help her with independence now could be another way of going about it (although that would be my last ditch attempt).

Could you also seek any advice and support from a charity for down’s?

x2boys · 11/04/2018 11:52

That's a worrying situation , I'm the parent of a child with severe autism and learning disabilities and the future terrifies me I'm hoping eventually he will live in some kind of supportive accomadation ?

Marylou2 · 11/04/2018 11:55

That’s a very difficult situation for you OP. You sound a very compassionate and understanding sister. Does your sister have a social worker or GP you could speak to or perhaps you could contact your local adult social services and discuss the issue.
Could you arrange with other members of your family to sit your mum down and voice your concerns. I know this will be difficult but it may make your mother realise that she needs to act in your sisters best interests. Good luck with all you do.

Knittedfairies · 11/04/2018 11:55

I had similar issues with my brother, although he did attend day service provision so he wasn’t as isolated as your sister. My mum expected me to look after my brother when she and my dad were no longer around. It was never discussed, but I knew. I broached the subject and said I wasn’t going to do it; unfair on my brother, moving him 80 miles from his friends and unfair on me, because my own son has a severe learning disability. It would be fair to say that things were very frosty for a year or so after that... My brother was then hospitalised and Social Workers decided my parents could no longer care for him properly, so ‘kidnapped him’ (according to my dad) and moved him into a Supported Living placement. The last two years of his life were the happiest time for him - which makes me sad that he could have had it years before.
The other thing that I know my parents did was to use some of my brother’s benefits for things that did not directly support him. I’m not saying your mum does this, but it’s not uncommon.
Does your sister have a social worker? She may have slipped under the radar but that would be your first port of call. Good luck; it’s a hard conversation to have with a parent.

MrsJayy · 11/04/2018 11:57

Relative of mine works with women with DS it is assisted living and they are cared for in homes (houses) 24/7 If you contact your LA adult social services they could point you in the right direction, you are right your mum isn't going to be around forever and your sister deserves a healthy life.

immortalmarble · 11/04/2018 11:59

It can be very hard getting out with someone who is disabled. You sound as if you disapprove of everything your mother does. Are there other issues there?

twinkletoedelephant · 11/04/2018 12:02

My brother is 40 and lives in a supported residential house ( he is not capable of independant living) he has a very busy social life and is enrolled on various courses that might interest him at the local college woodwork / gardening etc.

My mum wanted me and my sister to 'look after' him. But he needs 24 he care really and she was gently persuaded to try the residential care placement. He has changed houses 3 times .

My mum died 5 years ago and he had a Well established routine already so it wasn't too disruptive for him to change things he is safe and happy

Knittedfairies · 11/04/2018 12:03

Strange, Marble, I didn’t get that from the OP at all.. It is a difficult situation however well you get on with your mum.

MrsJayy · 11/04/2018 12:07

I don't think the Op dissaproves of her mother would just like her sister to be Ok. Mum and Sister have got stuck in a routine of sitting about the house that really isn't a life.

Worriedaboutsisterp · 11/04/2018 12:07

The other thing that I know my parents did was to use some of my brother’s benefits for things that did not directly support him. I’m not saying your mum does this, but it’s not uncommon

I would say this is almost certainly the case. I know the payments my sister receives are quite high. I don't know what the money is spent on.

Thank you for the advice everyone.

immortal you probably aren't far off the mark as I'm not close to my mother. But she has a car, can drive and my sister is not physically disabled. She can't go out without my mother as she wouldn't know how. Wouldn't be able to catch a bus or even walk anywhere as she wouldn't know where she was going.

OP posts:
MizCracker · 11/04/2018 12:07

I'm not sure if this is appropriate, but you could call social services and explain the way in which your sister's health and other needs are being neglected. I believe if someone is considered a "vulnerable adult" then SS will at least do an assessment of them.

It sounds like your sister has fallen through the cracks and isn't on any health professional's radar. Calling SS might get her back into the system.

Worriedaboutsisterp · 11/04/2018 12:10

To add as well I don't think my mother is being intentionally cruel. She is just stuck in a routine as a pp said and it's probably hard for them to get out of it.
My mother doesn't really have anyone else either so she may need someone to care for as much as my sister needs a carer if that makes sense.

OP posts:
Worriedaboutsisterp · 11/04/2018 12:11

I don't think she has got a social worker. I don't remember my mother mentioning one for a a good few years so it may be the case that she has fallen through the cracks as you say.

OP posts:
Bekabeech · 11/04/2018 12:12

I grew up with a neighbour like this (although they didn't smoke and seemed healthier). When the Mother died it was a shock for the DS man, and his sisters got him into sheltered housing. but it would have been so much better if he'd got out more before.
But I thought that kind of thing was just in the past. I know that Mother had reacted to being pressured to "just put him in care and forget about him".
Could you get your Mother to see how some DS people live nowadays? The ones who live near me have pretty full lives - they stopped me to tell me about their Christmas party last year.
I wonder if she is a bit depressed and so frightened for the future that she just can't think about it.

immortalmarble · 11/04/2018 12:13

I understand that Flowers but even when they aren’t physically disabled it really is very difficult, sometimes.

I doubt very much your mum needs someone to care for. More likely she would give anything to see your sister living the life you and your other sister can and do.

cestlavielife · 11/04/2018 12:15

You need to go to ss and have a meeting
You need to plan for when your M dies or can't care any more
You need to discuss whether this amounts to neglect of your sister as a vulnerable adult and does it meet safeguarding threshold?
Speak to local carers org. For advice
You need to discuss future plans look into supported living etc

Try and visit a supported living home near you to see how they run. Or try and get in contact with a family member of someone to find out how it works . Try carers org. It ..might reassureyou there are options out there.

MrsJayy · 11/04/2018 12:15

It sounds like she is proud but struggiling she has cared for her for 30+ years and is maybe just tired but refusing any help

Viviennemary · 11/04/2018 12:15

Good idea to contact the Downs syndrome charity as they will most likely have come across this before. it's unlikely your Mum will change her ways unless she can be persuaded by somebody outside the family. I think you're right to be concerned about this.

TinaTop · 11/04/2018 12:17

I know a lady with Downs (child of my mums neighbour) who was in a similar situation - not allowed to do anything for herself, socially isolated with mostly only parents for company. When her parents died she felt lost and completely regressed. She stopped speaking, then stopped walking, then stopped going to the toilet and had to be put in nappies, etc. Now she basically sits and stares at the wall all day in silence. Very sad.

chirpyburbycheapsheep · 11/04/2018 12:25

My mother doesn't really have anyone else either so she may need someone to care for as much as my sister needs a carer if that makes sense.

This makes perfect sense to me. Do you believe there is a certain amount of co-dependence going on? I am disabled and my mother actually benefitted from my illness in many ways as she got to keep me close and not be all alone. She was 'bereft' when I moved out and still wants me to come back regularly. I think it's hard for people to understand that mind set as most people think 'Oh I am sure she wants her daughter to live a full independent life......' Actually I think it is more complex than that and there can be deep ambivalence.

The practical side of things I think other posters have given good advice and you seem like a very caring sibling Flowers

chirpyburbycheapsheep · 11/04/2018 12:26

Tina that is utterly heart-breaking and has made me cry

Gonegrey31 · 11/04/2018 12:27

Please also contact “The Home Farm Trust”. Wonderful charity that deals with the situation you described.

ghostyslovesheets · 11/04/2018 12:30

adult social care team might be able to help - she needs support to develop her independent skills and have a life - plus planning needs to be in place for when your mum dies (sorry x)

Spinsterf · 11/04/2018 12:37

Definitely contact the social services. Your sister is a vulnerable adult, and although I am sure your mother loves her she is not ensuring all her needs are being met. She needs more than just being kept fed and safe - despite her disabilities she may still enjoy meeting others, doing varied activities and forming relationships with people outside her family. It doesn't sound as if she is getting the opportunity to do any of those things.