Hi i am new here, i am a full time carer for my daughter, she is 42 has severe learning disabilities, and physical disabilities, i am a lone carer my husband passed away a few years ago, i cared for him for the last 6 years before he passed away, these last few months has been very hard my daughters daycenter closed in march and she hasn’t been there since, no respite but its been like that for many ,
Hi & welcome Susan
Times are difficult and that’s without adding Covid into the mix. Are you connected to any local carers groups and your local Mencap. Are you and your daughter able to get out at all. As the day centre is closed. I can only image how disrupted this is for you both.
Hi Susan, welcome to the forum.
My son has severe learning difficulties, now in “supported living” but was left entirely on his own for 19 hours a day.
I have many friends in your situation. One couple are 75 and 84!!
All I can suggest is that you nag Social Services, because they will think you are OK otherwise.
Thankyou for your replies, i do take my daughter out for a walk when i can with tthis weather not often, there are no mencap groups in area our last one moved then closed down, i have nagged social services but as of the pandemic there isn’t a lot at the moment they can do, it doesn’t help you don’t have a assigned social worker and have to go through everything every time you call, there are a lot of people a lot worse of than me but it feels good just to have a little moan
Hampshire don’t usually allocate social workers either, and don’t keep good record either. I spend so much of my life going over the same things to different staff. In total, over 25 different members of SSD staff!!!
Hampshire don’t usually allocate social workers either, and don’t keep good record either. I spend so much of my life going over the same things to different staff. In total, over 25 different members of SSD staff!!!
Hi Susan, welcome to the forum
This sounds like a really difficult situation for you, have you thought about coming along to one of our care for a cuppa sessions?
We’re running series of online weekly meet ups for carers to get together and chat informally. People say they’ve found it really helpful and supportive and it’s nice to be able to take a little bit of time for yourself. There’s no pressure to share any more than you’re comfortable with. Join up details are here:
https://www.carersuk.org/help-and-advice/get-support/online-meetups
Do join if you’d like to
Best wishes
Ingrid
Susan, in Hampshire, where I live, they have now categorised service users into 3 groups, prioritising those who need day services most. As M lives alone, he was in the highest category, and can now go to one day service 3 days a week.
I suspect your LA is working a similar pattern, and also suspect that as you are not making a fuss, you are in the lowest priority group.
When I was 54, I was diagnosed with cancer. At 56 I was disabled in a car accident, saved only by the fact that I was driving my late husband’s Range Rover, not my Escort. My husband died when he was 58, suddenly, from a heart attack.
Don’t let the LA fob you off. You really do need to work out where your daughter is going to live as soon as possible. M had to move out when he was 16, due to my health issues. He went to boarding school, residential care, and now in his own flat, with carer support. I have been around to help with making his flat a real home for him, and making sure staff understand his background and challenges. He comes home regularly so we still see a lot of each other.
My brother with Severe Learning Disabilities used to go for three days a week (Hampshire). He is now living in a care home but had a letter yesterday from where he used to go to respite that they are merging with one at Fareham for the near future and everyone is going there which would have meant a 60 mile round trip to get him there and another 60 miles to collect as we are on the Dorset border.
Lindi, did they consult with you?
First I heard was letter yesterday. Thank you BB for all your help in the Summer A has settled in well and seems to be liking it there 