Support for older sister living alone for first time - age 69

[Numphed]

Hi - I would love to connect with others who are in a similar situation to me. My older Sister Anne has, what I would describe as, mild learning difficulties but has lived with my Mum all of her life. She is now 69 and Mum died just before Christmas - age 95. I support Anne as much as Can but live so far away (over 250 miles).

They were co-dependent for the last ten years and Mum prevented me from getting proper support and assessment for Anne from Social Services though I tried many times.

She is getting by, living on her own at the moment with my support and volunteers at a charity shop a couple of times a week and has a few light touch friends but is very lonely at home. She has the help of a few others but is lonely and it is a precarious situation. I don't want to get in touch with Social Services and say the wrong things.

Sorry if this is a long post...

[Maurice_Mencap Partner]

Hello Numphed , thanks for reaching out. You're not the first to ask a question along these lines, it can be a really tricky situation to navigate.

I'd recommend getting in touch with the Mencap helpline to speak to one of our trained advisers as a first step - you can reach them on 0808 808 1111 or on [e-mail] if you prefer.

There is also a great organisation called Sibs which is for anyone who has a sibling with a disability. Their CEO Clare answered some questions in an "Ask the Expert" event we had in the community last year. It might be worth looking through some of her answers here: healthunlocked.com/mencap/p...

You can find out more about Sibs at sibs.org.uk

Being so far away from your sister must be a huge challenge, so I think it would be really important to have that conversation with the learning disability team within the social services department at her local authority. What "wrong thing" would you be worried about saying?

[Numphed in reply to Maurice_Mencap]

Hi Maurice

First of all thank you for your reply. I have felt very isolated dealing with this situation so its a good start to feeling connected to others.

The 'wrong thing' is about advocating for Anne and misrepresenting her. She manages ok day-to-day but it's when even minor things go wrong that her world quickly collapses and she can become at best anxious at worst completely panics and breaks down - that's what is so difficult to get across.

When I speak to any agencies they just ask me if she can wash and dress herself etc which she can but she can't change a lightbulb or her quilt cover or open a can or manage most things online etc. She cannot navigate strange places on her own, escalators, trains etc - cannot understand simple GP communications things that most of us take for granted. But when she's questioned she can sound capable and wants to come across as ok - of course she does!

Do you see the challenge I have? I'm desperate for her to have as happy and as independent a life as possible after years of being held back and overprotected by my Mum all of her life but I don't really know how to do it on my own?

[Maurice_Mencap Partner in reply to Numphed]

Yes, I understand the challenge you're facing, unfortunately I've got no direct experience of anything similar so can only signpost you to others who might be able to help. I expect there are other members of the community here who have faced similar to what you've said though and will share their experiences.

It's definitely something that you will need some support with, and not something you should face alone. The learning disability team at the local authority where she lives will no doubt have come across similar situations though and so it would be worth having a conversation with them. Everyone's support needs are different, so I would expect them to be sensitive to that and understand that you're an expert by experience with your sister, and take on board the subtlety of the support she needs.

Agencies by contrast can be very 'matter of fact' as they try to build a picture of someone in terms of what their support worker would need to do for someone and build a package of care. It can feel very clinical.

It might also be worth contacting any of Mencap's Network Partners - usually local Mencap groups who work in regional areas - who carry the Mencap name but are independently run charities and organisations. They are often tuned into what support there might be available in your sister's area. You can search through our list of network partners here: mencap.org.uk/search/groups

[Numphed in reply to Maurice_Mencap]

Thanks Maurice - I've looked at the Sibs website - which is great - and already found lots of great support via this online community. Thanks again for your kind replies.