Hello, I’m new to carersuk. I (33m) am currently caring for my sister (37f) who suffers with multiple conditions (which I struggle to remember all of them due to a TBI I suffered with a few years ago). I became my sisters full time carer after my mother passed away and I had to leave the work force. my mother was also disabled herself, I had been caring for both my mum and my sister after work and on Sundays. I don’t exactly know what I’m looking for on here, I can just sometimes feel very alone, and am hoping there is others that can possibly relate. I also have trouble understanding with what sort of help i can get. P.S I apologise for the life story I find messaging very difficult.
Welcome to the forum. Does your sister have a physical disability, or learning difficulty?
When did she last have a Needs Assessment from Social Services, and you, a Carers Assessment?
Are either of you get any support from Social Services?
Hi @TBISunday
Welcome to forum.
Just a quick post as I really need to settle to sleep.
Being lonely is something lots of carers feel, non carers don’t understand how isolating it can be.
Carers Uk organises various online meet ups you may be interested in:
You are welcome to join in on Roll Call in the members section, it’s described as, ‘ Take a break from your caring to chat about the other things that are happening in your life and contribute to our monthly ‘Roll call’’.
What sort of care and support does your sister need?
Has she had a Needs Assessment and have you had a Carers Assessment? These can be the route to getting some help.
Hello and thank you for responding, my sister suffers with physical disabilities, but also has had some brain damage as well as complex PTSD. It’s been a few years since her last needs assessment, but unfortunately a major contribution to her PTSD is actually how she has been treated by social services in the past from the previous borough in which we lived. So it’s kind of a difficult situation at the moment, and neither of us are receiving any support from social services and I myself have never had a carers assessment.
Hi melly1, thanks for the roll call and online meet-ups suggestion. That sounds like something that would be beneficial for me. You are definitely right about non carers not understanding how isolated carers can feel, sometimes I even feel like I’m wasting my breath even talking to my closest friends.
My son is 46, some brain damage at birth. He’s had bad and good experiences from Social Services, now lives alone in a privately rented flat. After serious health issues, it’s impossible for me to look after him for more than a day or two. I would urge you to have assessments done and consider what would happen to your sister if you were suddenly taken ill, as I was!
Thank you bowlingbun! That is a very good point. I find it difficult to care for her as it is with my own health problems, and I know this may sound a little dramatic but it’s like I can feel my mental and physical health deteriorating, I no longer feel like the capable man I used to be. but you are definitely right, we should be having the assessments as soon as possible, for both of our sakes. thank you for sharing your own situation, you have really opened my eyes. I wish you and your family all the best.
My son became a weekly boarder at his school, then a residential farm college. Then a lovely care home, until it changed hands. Slowly that all went horribly “pear shaped”. Then he moved to his flat, about 15 years ago, it’s really lovely. Throughout all his moves he’s come home regularly to join in with family gatherings and go to steam shows and lorry shows. I’ve kept control of his benefits and nearly everything is new or very good second hand, with the aim of it all being serviceable long after I’ve died. He rings me every night for a chat to catch up on all the news from home, and tell me what he’s been doing.
That’s great. I’m glad he’s got his own place now and the freedom that comes with it. unfortunately it is not the first time I’ve heard of a good care home changing hands, and as you said going “pear shaped”. I really feel that the vulnerable and there family or carers need a lot more support than they actually get. It’s great to hear he is doing well, and still comes to spend time with the family and that you get to speak on a daily basis.
He has matured in so many ways I never thought possible. His flat is immaculate, even folds hid pyjamas and puts them on his pillow before going out, he does his own washing up, clothes washing, drying, and even ironing! He loves his little garden, mows the lawn often, and there is a hedgehog visitor at night which he feeds, as well as the birds. His speech is much better too.
That’s great! It sounds like he is really thriving, you should be really proud. And it’s also great about his speech, I myself lost the ability to speak and had to learn again and know how painful and frustrating it can be.