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.

[DrSarahmac in reply to Maurice_Mencap]

Hi. It sounds like your sister has similar needs to my daughter. Almost on the cusp. Can appear confident and engage with people on routine stuff but can’t manage her own finances, appointments, forms, personal care, relationships etc. I’ve recently engaged a “personal assistant” to work with her a couple of hours a week. It’s someone to keep an eye on things and provide support with day to day stuff (I still manage the finances). It takes the pressure off me and gives my daughter another positive relationship in her life. It’s also someone to step up and advocate for her if I’m ever ill or worse. They would be able to work with you to identify the key risk areas and help your sister navigate the agencies she/you will have to deal with.

[Numphed in reply to DrSarahmac]

Thank you so much for your reply.

This sounds like a brilliant idea and I'm wondering if I could find someone who could double up as a home help but who is practical enough to sort out other minor issues and supportive enough to spot when she is not well or just heading for an upset or low mood.

Like you - I can manage the big issues at a distance - but it's the little day-to-day things that jump up and bite me on the bum! They regularly make me sit down and weep and wish I wasn't so far away...

Cx

[DrSarahmac in reply to Numphed]

Yes it’s been a real blessing and removes the “what if “ anxiety. Not cheap but her benefits cover it. Maybe your local mencap can help you find someone? I got mine through local recommendations but the council also do a “support with confidence” scheme run by trading standards to connect you with approved people. They may do it in your area too.

[Numphed in reply to DrSarahmac]

Thanks again. The council where she lives are a bit haphazard I'm afraid but under lots of pressure but they do provide a list of approved home helps so might be a good place to start. Just have another friendly, understanding human voice to answer the phone - rather than a call queuing system - would be a great help!

[DrSarahmac in reply to Numphed]

Yeah our council only do a list. You have to take it from there. But at least it’s a starting point. It’s ok to ring a few and get a feel for how they might suit your sister. Take care and keep us posted 👍

[BestestBGs]

Hi Numphed, I can completely identify with your situation. My sister is 3 years younger than me and has a mild learning disability. She lived with our Mum all her life, until Mum died 14 years ago. Mum would have nothing to do with Social Services, so they always managed on their own and she too was overprotected by Mum. I took over responsibility for my sister, by default as I'm the eldest. We have a brother who has always lived away and for the last 6 years has lived abroad.

Louise has always been able to work and still does so. She lives on her own and I fully support her but luckily we (hubby & I) only live a mile away so it is easy for me to keep an eye on things. My sister sounds very much like your sister, as she too copes for the most part day to day. However she doesn't always tell me if something is wrong and I only end up finding out when I go round to her place . Louise is unable to navigate new places so has to be escorted to begin with. She is also unable to do anything online and doesn't understand any letters she receives, so I deal with all the paperwork.

Approx 4 years ago we put in place a Lasting Power of Attorney (Property & Financial Affairs) to try and make it easier for me to act on her behalf with her Housing Association, etc, though in practise this does not always work. It may be worth you looking in to this if you haven't done so already. I'm also registered as her carer with our GP practise but messages are sent to her even though she doesn't understand them.

I have always been worried as we were Louise's world outside of her work and I felt she needed some sort of life away from us. It was only through a Female Learning Disability event run through our GP Practise group last year that we found out about some learning disability clubs run in the evenings near us. Louise now attends these and enjoys doing so; it is lovely seeing her make new friends.

I would be happy to be in contact with you.

[Numphed in reply to BestestBGs]

Thank you so much for this. It would be wonderful to be able to be in contact with you.

Your advice is so sensible as I realised some time ago that I needed to sort out some of those things and I already hold Power of Attorney for Anne and I am registered as her carer with our GP and both of those moves have been game-changes - but she has lots of health problems and her care is very patchy and I feel I have to constantly nag them to make sure she doesn't get overlooked.

Thank you again for responding and I'd love to talk more...

Cx