Guidance please

[richarduk]

Hi

I am looking for guidance on support that can be offered to my sister-in- law who is 50 and has Down’s Syndrome.

She is cared for by my mother in law who is 79 and over the last 18 months my sister in law’s dementia has progressively worsened.

The support she received which was a community centre 3 times a week has recently stopped as they are not trained for dementia . Respite stopped during COVID but now this has been taken away for the same reason.

I am very concerned that my elderly mother in law who receives no additional support of any kind has become isolated delivering 24 hour care .

My mother in law lives in Luton Bedfordshire and I would be grateful if you could assist me in finding out what support is available .

Thank you

[Eeviee]

Hi there. You need to get in touch with social services asap and see what support you can get for your relatives both your sister in law and your mother in law as her carer. Also contact carers Uk and mencap as another starting point. Possibly contact any other organisation dealing with dementia. Good luck

[49Twister]

If your mother in law is happy to receive support for her disabled daughter I would contact social services in your area immediately and ask for the adult learning disability team. Explain the situation as urgent and a social worker should be allocated to come and do an assessment of your sister in law’s needs and also your mother in law’s needs as her carer. This will alert them into providing the support they both need and set things in motion. I would also make an appointment with the GP and get him/her on board in organising the support they both need and deserve. Hope this helps.

[BenjiB]

You definitely need to contact social services asap. I’ll be really honest now. I’ve cared for those with DS and dementia. It’s incredibly hard and I think your mother in law is best to consider residential care at this point. I know that’s a hard thought but it’s not something an elderly person themselves is going to be able to deal with.

[Tracidu]

Hi, I am sorry to read this , it's one thing I didn't really think about for the future of my son , it's very sad . .My mum suffered with dementia , it was very hard to deal with , I had my learning Disabled adult son to deal with aswell as my husband who was terminally ill. I dont know how your mum in law is coping but I really feel she needs to get in touch with Social Services ASAP. I know how hard it must be for her , When eventually after nearly 4 years careing for my mum it became too much as she was severe and a danger to herself and others, sadly a nursing /care home had to be found . I felt I was letting her down .

There were 2 DS gentlemen in the place I found who were being looked after , they had family visitors all the time . Its a stressful situation trying to find the best place with good care and I didnt want SS to choose so a lot of foot work was involved. I hope I'm not over stepping the mark suggesting care but if all else fails it is an option for you mum in law . Take care and very best wishes to you all .

[Iolo]

Hello,

I want to echo everything that others have said about reaching out to social care and the local learning disability team (some teams accept direct referrals from families) but I also wanted to share a positive story. I knew of a brother and sister who lived together, he had Down’s and developed dementia and she cared for him. They were both in their 70’s. It got very stressful for her but then social care arranged for care to come in every day to help alleviate the pressures and give her some time for herself. The main issues were caring stress and lifting risk for her and the risk of falls for him as his bedroom and bathroom were upstairs but they managed with the support and some environmental adaptations and she was pleased because she was worried about him going into care. Sadly he has now passed away but in his own home and bedroom. Conversely I have known others to move into care and flourish relatively speaking. I think I just wanted to provide some hope as these times can feel so worrying for people but there is help out there, it’s sadly just not always that easy to get it.

Another source of help are Admiral Nurses. Their role is to support families with their caring role but each area has different arrangements. There is information about them here: dementiauk.org/get-support/...

dementiauk.org/get-support/...

There is also useful information on this website: bild.org.uk/product/downs-s...

I am happy for you to direct messages me if you need any other advice, it can feel easily overwhelming how to get help but I hope these stories and options help in some way.