Looking 4 live in carers/company who specialise in DS. My sister is being institutionalised by her carers who deliberately sit her @ the TV

[Frazzled4]

I have complex health issues BT, C-PTSD and Heart so cannot look after my sister. Feel we are being failed by the system and everything is money not my sister led. There has to be people who specialise with clients that want to live at home and see them thrive, not just ignore them 😔

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Leave activities for them at place where she is - we leave activities for autistic son and phone up to make sure they are doing something But as for carers get in contact with social worker for disability - in the disability team or ask doctor, for help

[Charlie2750 Community friend]

Hello Frazzled4 and welcome to this forum.

I retired from nursing but during my time I met companions who lived in and they would stay for 2-3 weeks at a time and would have to take time off during the day.So it was the same person for 2 weeks or more.The compaions cost would depend on 2-3 issues.If they had to get up at night more than once it would cost more.If they had to give personal care it would cost more.Most were able to shop and cook and clean but you could possibly get a separate package which could come in and help your sister to get washed and dressed fed and tableted and then go leaving her to the companion.

You mentioned that your sister had DS which I assume is the other terminology for Multiple Schlerosis. . This forum is normally visited by people looking for help with learning disabilities and you may find more help on the other forums.

Could it be that your sister does not or has not the motivation to do anything other than watch the tv.?

I only offer advice and ideas but you may find someone else comes along later.

Care at home is expensive but may cost less than a residential home but if your sister needs a lot of "nursing care" in a Nursing home she could qualify for the Nursing element to be paid for .In some scenarios where there is a lot of care and she wants to stay at home she could get a nursing care package met by the NHS

Good luck

[Frazzled4 in reply to Charlie2750]

Thank you for your reply and all the suggestions you have made it has really helped Charlie. I do appreciate ot.

My sister has Downys Syndrome (DS for short). She was babied and got out of the habit so needs constant reassurance/promoting/attention not sure which tbh which is why professionnels who understand Downs will realise when they are being played or manipulated which my sister does to get attention or be the constant source of it.... Not sure which again as it is much worse as has suffered huge upheaval/change since Dad dying and covid all coinciding and everything she had to buffer that closed.

The carers have been caught watching tv with her sitting meekly. I have set up activities but I can't police them. My sister needs a little encouragement but it seems to be at the mercy of the carers following the tasks agreed or me putting cameras in to "motivate" them. In fairness they too view and treat her as a child because of her behaviour but she is a 49yr old adult. She is very capable around me or her centre but that has been closed and continues to be for the foreseeable future. She has classic health problems associated with Downs but is fit and healthy. She is a "hugger" and lost weight, has eating dysphagia all of which means she is at risk and shielded professionally ie no one will see her. She is safer at home if we want to avoid failing to thrive or catching anything and ending up with her in hospital which will be a trauma too far for her.

It's a tricky balancing process. If I can get it right she will thrive and we can support her. Covid is making this worse.

[Charlie2750 Community friend in reply to Frazzled4]

Hello Frazzled4

Sorry I misunderstood the Downs Syndrome abbreviation.

If your sister receives help in day centre if you feel right about it why don't you phone them and ask for one to one care.In our area I get Direct Payments for my sons care and his day centre was closed but soon started to offer 1-1 care and he now has 4 days each week.The direct payments we had to continue paying on approval and the order from Local Authority .If you get DP you can use these to secure an alternative arrangement in these emergency situations.Look at GOV.ORG website on use of DP.

good luck.

Charlie

[Frazzled4 in reply to Charlie2750]

Hi Charlie

Because my sister has Downs the centre has been shut since March and they are hoping to open in September if their isn't a second wave. Downs are huggers and most come with cardio and specific health issues which puts them at higher risk than other disabilities. The centre can't open. I am trying to get them to zoom activities so the group can all participate and see one another if nothing else than by zoom.

Atm it's in talking stages. 😔

[natalievbailey in reply to Frazzled4]

I’m interested in being a carer. Whereabouts are you living?

[MFrancis71 in reply to Frazzled4]

Hi I’m new to here and I totally feel your despair my daughter has SLD and lives at home with me and I have funded carers 4 days a week. Like you we have had most of her normal activities closed due to covid and I also feel like I’m just sitting her in front of the tv and computer most of the time. We are just doing cinema and going out for picnics and just trying to manage day by day until things improve. Do you employ agency or private carers I find private better as you can interview and not just be given anybody who the agency have available. Good luck x

[Shue Community friend]

Hi Frazzled4. How old is your sister? I totally agree she needs so much more than tv stimulation. She deserves more. My own son lives at home but attends a fantastic day centre 3 days a week where they do theatre classes, pub lunches and shopping aswell as life skills. I have just secured a fantastic support worker who will take him bowling, for a game of poole and a beer and to his mencap clubs. He does have a lot of other issues besides his Down's mainly mental health but his life will be so much more fulfilled from now and I imagine you want the same quality of life for your sister. Try the mencap helpline they will be better informed and direct you to appropriate services etc. 0808 808 1111. Contact the social worker and tell them you want more activities and stimulation for your sister, you're her representative push to get the best for her. Good luck and best wishes.

[HolisticMum in reply to Shue]

That is great to hear. I worry for my sons' futures and we need people who will stimulate them, treat them with love and respect. So lovely to hear you have good support workers. We do too at the moment but would also like to get younger people involved who would be similar age groups. That is quite hard to find unfortunately.

[Shue Community friend in reply to HolisticMum]

You could approach colleges or universities see if any doing social care, psychology etc would be interested. Good luck.

[I_am_a_sibling Survey Community friend]

Hi Frazzled4 , what a tough situation. You're not alone - many siblings are fighting for better care for their disabled brothers and sisters, and you're right that your sister needs more stimulation than just the TV. As others have said, it would be worth getting in contact with the social worker again. Activities need to be listed as part of your sister's care plan, so if they're not currently, then getting them on there would be a good way of making sure the carers meet that need. As well as the learning disability helpline (above), you could also contact Sibs, the charity for brothers and sisters of disabled children and adults to talk it through (see sibs.org.uk/contact/). Take good care of yourself and let us know how you get on. Fx