Newbie

Hi i am new here, i am a carer to my 42 year old daughter, she has severe learning disabilities, along with physical disabilities, her daycenter closed down in march due to the pandemic and has been home with me since, there has been no respite either, its been hard going, i am a sole carer, my husband passed away a few years ago, where i cared for him to for his lastc7 years

Hi Susan,
welcome to the forum.

That must be very hard. You must be exhausted and starting to feel rather nutty!

S has autism and related learning difficulties and he was off his college day service until July, when they opened partly and gradually. Fortunately, his day service is an independent one, our LA ones are still closed - with the staff on full pay! However, this is not the case in many LA where day services have resumed. The legislation allows for this to happen. Larger day centres that do not have enough space to have everyone in at one time (and stay covid secure) can operate a limited service and offer less days.

If you’re daughter doesn’t have underlying health problems then start pushing the day service and social care to start offering her some hours.

If you are worried about her going back, what sort of help would you like for her/you? During this time social care have to be flexible to support carers and those who aren’t receiving their usual services. It’s worth getting onto social care and pushing for support?

Melly1

Thankyou Melly, i think i am going nutty, my daughter is diabetic, the day center she attended got flooded in early February, she was allocated a placement in early at a different daycenter only to close down 2 weeks later with covid, she was on the sheilding list until mid august, the daycenter did offer her one day a week but no transport, i dont drive and the daycenter is 8 miles away, social services has given her an assessment but didn’t make sense by bringing a social worker down from Birmingham to stay overnight in hotel just for one assessment, she was good though, she contacted daycenter and there wasn’t anything they could offer her at moment, and done a carer assessment over phone waiting to hear back from that, so fingers crossed i might be able to get some kind of help,

Oh Gosh Susan, 2020 has been a tough year for you both, what with the flood, change of day centre and Covid.

I’m still transporting S, (luckily I drive) as they cancelled transport too. They have started transporting a few young people but I think S would find wearing a mask on transport tricky, but from mid January I will need him back on transport.

Why on earth did they waste money bringing a social worker down from Brum?!

Does your daughter have support from paid carers to help with personal care etc?

If they day centre can’t help you could ask for some support until they can even if you just wrap your daughter up warm and the care workers take her for a walk - it would give you a few minutes break.

Melly1

Transport to any day centre that SSD provide should be provided automatically.

No i don’t have any paid care at the moment i have asked for it waiting to hear back it would help a bit just to have a hour or two break, transport has always been provided up until the center closed for covid, the funding is still in place with social services but for some reason local authority is not providing it only told when things start returning to a normal it will be provided again,i do feel sometimes that we are the forgotten ones i know i am not the only one in this predicament but sometimes it feels like

Your daughter should have a FULL package of care, not just leaving her with you!
What plans have been made for when you are unable to care any more?
Everyone should be looking to make her as independent as possible so transition is as easy a possible for her.

I have asked for a care package for my daughter, i know how extremely hard it was caring for her and my husband and fighting to get a little bit of help but it came to late, the impact of her father passing away was very hard on her, and still is, i want to make sure she is settled and i know happy and safe, while i am able, but its not that easy trying to pin them down or the same person to get the ball rolling, at this moment a hour or two break would help, but i find that our local authorities are not very helpful as long as she is being cared for thats ok , and due to covid there isnt much they can do, but they can make me feel guilty for bothering them