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

[Worriedaboutsisterp]

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!

I was also going to recommend contacting HFT. They're fabulous.

www.hft.org.uk/

ask for an assessment www.nhs.uk/conditions/social-care-and-support/assessment-care-needs/

It's quite common for a disabled person's income to be viewed within the family as general household income.
Not that I'm comparing this to your mum OP (honestly!), but a social worker case I had some input towards involved a disabled woman being supported to leave her family home and share an adapted bungalow with another woman who had similar learning disabilities. They were supported in their new home by a Care Provider. She had absolutely no money at all to help purchase items for her new home (the Local Authority provided basic items only, such as white goods, bedroom furniture and sofa. The family had used every penny that she had and refused to pay for anything for her new home, even fighting against the LA to retain control over her money.
Both women benefitted hugely from living much more independently and their quality of life improved. It was an absolute pleasure seeing the transformation, in their lives and personal development, even though of course it was limited by their disabilities.

Due to cuts in Local Authority funding, cases are usually closed if there is no current involvement in many council areas. Previously, cases were reviewed annually and the clients given an assessment of their needs if they were happy about this. Staffing shortages has led to most annual reviews being abandoned in respect of clients who have no current SW involvement. If you contact your local social services department, they will have a central point of contact that would reopen your sister's case and they may be able to encourage your mother to change her stance.

Please, please get SS involved.

As PP have said, there must be forward planning in place for whenever your mother for whatever reasons is no longer able to care for your sister.

If a care assessment reveals that your DSis is a 'vulnerable adult' other support and services are available to her.

It is really really difficult to intervene in these ingrained situations, and almost impossible for a family member when emotions run so high, and no doubt your mother will very mixed emotions about giving up looking after your DSis (pride, guilt, love, shame - all sorts of things come together to make people often react very defensively). It can be much easier for all concerned if a 'stranger'' from SS does the dirty work.

The situation your DSis is in, while not uncommon, is really sad and ultimately dangerous for all concerned. Please be her advocate and get help involved.

I don't think you're BU, I pick up from your posts that you're worried about your Mum too.

I would seek some support from DS Association, Social Services and Local Carers support.
My son is 31, I'm 57...I'm suffering carer fatigue (the care for him has included 10 years of caring for elderly DM and PIL).

My son goes to a day centre four days a week, he enjoys hates it, mostly, but NEVER wants to go, every morning is a battle.

He has severe LD, austism, mobility problems and multiple health problems.

Whilst I was caring for my mother, I was forced through circumstance to push him towards occasional overnight respite (he was always so heartbroken at the suggestion, so previously I had just let him get his own way it go).
It was the best thing I ever did, he loves to go.

They are totally geared up to support him and I am able to recharge my batteries stay sane.

I worry about the future, he has an older brother but I would never want him to be his carer.
I see him living in supported accommodation within the next 5-10 years. A number of his peers from the day centre already do so.
I am lucky he has a good care co-ordinator from Social Services and our local SS is pretty good with Adult Learning Disability support.

There are days after days after days where I feel totally ground down even though I love him with all of my heart.

I hate to go out with him, it's so exhausting, he can be so challenging and I am worn out.

Then there are days where he makes me laugh till I cry, my heart burst when I see his kindness and compassion for animals, babies and little, old me women.
So I plod on.

Ah ThePlanet these situations are so emotionally complex

My brother has learning disabilities and lives in supported living. My parents were very keen to get him settled before they got too old. The situation you describe is very common and it does sound as though your mum is reluctant to do any forward planning.

My friend’s aunt is in her late 50s and moved into supported living last year. Prior to this she had stayed at home all her life and had a close almost codependent relationship with her mum. She has taken to her new situation like a duck to water. She goes out with carers often, helps in her house, goes with a carer to help in a charity shop once a week. She still sees her mum but has a much greater level of independence.

Contacting a the Down Syndrome association in the first instance is a good idea.

@ThePlanet it might be a good plan to get the Supported Living move off the ground now; I can’t see funding being exempt from cuts. Please think about it seriously. If he loves respite care, he’ll love independent (from you) Living too.

Your mother may find it difficult to take her out and possibly is trying to protect her from a world that can at times be unkind.
I completely agree that this situation is not good for your sister and that there needs to be forward planning.

My mother and sister are in a similar situation to your family OP but some years on. My mother is 91 and my sister is in her sixties. They live together and my mother has never allowed my sister a life of her own. My mother has always insisted that I will care for my sister when she dies (I won't and have made it clear that won't happen).

Social services are aware and involved on the periphery now, so that at least when my sister has hospital appointments she gets a carer take her, and when mother had a hospital stay last year because of her diabetes carers looked after my sister in their home. I live from day to day, worrying about the two of them, but can't do any more for my sister until my mother isn't here anymore.

My uncle was like those, however more independent- able to shower, make basic meals, pop into town etc.

My grandmother was 85 when she died and my mother took over the caring role and moved in with him. His behaviour deteriorated over the coming years until she could cope no more. She placed him in a supported living service the same week he was diagnosed with dementia (common in those with Down syndrome).

He should have been placed years previously. The benefits to him being there far outweighed any negatives. Mostly the negative was family feeling guilty.

I'm happy to say that I'm glad his last years were happy, even though he didn't really know us at that stage.

But my biggest piece of advice to anyone in this situation, is don't see this as you are 'giving up' on your child/family member. See it as you would for any adult, you are helping them transition onto another step of their lives with more independence.
I can guarantee that they will end up having a far greater social and Activity life than you could imagine.

Also, yes there have been negative stories around services for people with learning disabilities, however these are thankfully few and far.

to everyone currently making these decisions, because it's bloody hard!

Thank you for the flowers @chiryburpycheapsheep and the advice @Knittedfairies

You see, it's the WinterBourne View type reports that keep me awake at night and feed my inertia to change things.
But I know I must consider it before too long, for his sake as well as my own, it's the next milestone I must help him to reach.

For him to be admitted into care suddenly, upon my death is another haunting worry that keeps me awake.
It is the next milestone I must help him to reach.
Common sense tells me that I must get him settled and as safe and happy as I can while I am here to monitor and advocate for him.

It feels SO scary to think about and then it's SO easy to be weighed down by the events of the day to just brush the uncomfortable thoughts away to think about another day. I channel Scarlett O'hara a LOT. :)

i certainly don't try to stop him living his own life as pp have suggested others they know have done, though I question whether it really is a case of not letting them live their own lives or protecting them after years of bad experiences?

91!!!

Anyway OP, I hope you are able to muster some outside support to meet your Mum and sister, just to begin talking and gently but firmly push things in the right direction before some illness or accident takes away their choices.

Gawd...I'm a right preaching hypocrite one to talk

I think you need to get in touch with downs syndrome charities and also find out what kind of care could be available for your sister. Tread gently though. I think the best way to approach this is by trying to explore what your mum enviasges will happen when she is no longer around to take care of your sister. I have two dc who will need care and it is a very emotive and difficult issue but I also am determined to see them settled independently from me before I am too old to care for them. My dp struggles hugely with the idea of care or supported living but I constantly remind him that it is in their best interests that we get them settled in the right provision. Your mum needs support to do this and to feel confident that she is doing the right thing.

I used to work in a supported living house. Basically, its a house share with other people with learning disabilities. They have their own bedroom and have communal areas.
In a good placement, the support staff should encourage your sister to lead a more independant life. Things like making her bed, running herself a bath, making herself a cup of tea. It all depends on her level of ability, but the possibilities are endless.

Sorry posted too soon.

What i mean is that the life she is living at the moment is neglectful. Her needs are not being met, in the right setting your sister will flourish. Dont feel guilty or scared.

Please get in touch with adult social services. It sounds as though your sister would be entitled to Direct Payments/Individual budget funding. This can be used to pay for a personal assistant who could take your sister out for a few hours a week shopping/to the cinema etc and help her have a bit of life away from your mum. Social Services would first need to do an assessment though to work out what is needed. I'm sorry to say that your mum is being very selfish and I wonder if she is relying on your sister's income to give herself a more comfortable retirement than she might otherwise have? Please don't think that I am being horrible but I completely understand the situation. I have a 41 year old disabled daughter who lives independently with a lot of support - it was a long hard road getting our darling DD to that point but so worthwhile to see her enjoying her life and so much less worrying for us knowing that our other DD's won't have to care for her when we're gone. That was never what we wanted for her or her sisters. You really need to have a serious talk to your mother about how she views the future for your sister once she has gone - you need to point out that she is being extremely unfair to her and to you and your other sister with her current stance.Please don't give up on your lovely sister and try to get her the help she needs now - it will be so much better for all of you. Good luck OP and good for you worrying about your sis!

She should be having a yearly review from your local learning disabilities service (who would have funded the previous day service). Call them up and ask to chat with the duty social worker about your sister. They can discuss options for the future etc with you, and how to increase the quality of your sister's life now.

Thank you so much everyone for the advice and for telling me your experiences.

I have arranged to meet my other sister tomorrow to discuss what to do next and will show her these replies. It is true that we need a plan now before the decision is made for us!

Best of luck Worried. I think you’re being wise to help your mum think of your sister’s future, and kind to your sister. If she had to go into emergency care on your mother’s death, it would be traumatic for her; a phased transition would be in her best interests.

Very best of luck to you OP. I do hope you manage to get social services involved in your sister's life.

Thanks Ellfed
I suppose the worry is doing so against my mother's wishes and the strain that may put on the family. But something needs to happen!

Very best of luck, Worried

No doubt the conversation/s with your mother will be difficult, emotional and painful but they are so necessary.

I agree with PP: maybe you can 'sell' her the idea of outside assessments and help by pointing out that this gives her an element of control over what choices are made, whereas if it just suddenly comes to crisis all decisions will simply be made for your DSis.

Also, sometimes if helps if you and your other sister 'take the blame'. "Yes, mum, you are doing a brilliant job with DSis and you have done it so well for so long, but we can no longer cope with the idea of leaving you to it". Something like that.

Your mum is neglecting your sister. Phone SS.

My SIL has learning difficulties and health problems. Despite a really supportive mum and dad (and brother aka DH), she has been in supported living for 2 years and is so much better off. She lives with 2 of her friends who have similar disabilities and I swear her social life is better than mine! She is absolutely thriving. Multiple groups every week and she is learning various independence-based tasks through her amazing carers. People with disabilities can have great lives if they are given the opportunity!

Best wishes to you and your family.