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Posted: Thu Apr 01, 2021 10:20 pm
M was brain damaged at birth, the cord was round his neck and he was slow to breathe, but there was a big cover up, long sad story. Part of him is operating at 3 year old level, can't read write or do any maths, but can be trusted to light up and look after a 10 ton steam roller! He lives in a privately rented flat, on his own, with carer support. Rent paid in full by Housing Benefit. Feel free to send me a PM.
Posted: Mon Apr 05, 2021 9:12 pm
Thanks for that BB. I don't think that would work for her. She would need someone with her 24/7. She does crazy things like wakes up at 4am to take the rubbish out leaving the door wide open and doesn't understand what danger she puts herself in or others.
I know they have hostel kind of things for young people and people with MH issues but I don't know about physical ailments but I guess this could be looked into.
Sorry BB and Penny, can I just ask, if someone went to the GP with her, would they be able to talk without her in the room or would she have to be there? I know for a fact she would say she is fine and nothing is wrong with her.
Still can't work out why the GP's have not noticed anything. When she walks, she walks like she is going to fall over and she won't walk in the middle of a path, she will walk into the wall or table. Truth be told, until Penny mentioned dyspraxia, I thought she was just being silly walking into walls and tables and tripping up. My bad. But I'm not her carer and never will be so trying to sort things out for her whilst Mum is still about.
Sorry if I sound awful. I never agreed to look after or care for anyone in the family, it just happened. I'm happy to do it for Mum but not the siblings - and I do it begrudgingly! I would rather they try and gain a bit of independence and life skills before it's too late.
Posted: Mon Apr 05, 2021 11:20 pm
some people are funded for 24/7 support, some live in small group homes or share a flat/house and have shared 24/7 care. There are lots of options. GPs are jack of all trades and masters of none. They have very little training about special needs. A friend of ours trained to be a GP a few years ago and literally had one afternoon lecture on special needs!!
Your GP will only talk to you about her without her there if she agrees this. Nothing stopping you writing to him though about your concerns.
Posted: Fri Apr 23, 2021 7:55 pm
I wouldn't go to the GP with her. I don't really get on with her. She does my head in most of the time. Sorry if that sounds awful. Life is hard having to look after Mum, her and the other sibling on top of my own issues and the ***** next door.
Sometimes I long for an escape from this bloody awful life.
How do you all keep so strong and work through it?
Posted: Sat Apr 24, 2021 6:16 pm
Hi on the verge. I am Kristie I am a volunteer for Carers Uk. Welcome to the Forum. You`re not alone, we are sure that many on here will understand exactly how you feel and offer support. Caring can be very lonely and the pandemic has made caring responsibility challenging as many carers have been socially restricted and unable to attend social groups etc.
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They provide information and guidance to unpaid carers. This covers-
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Posted: Thu Jun 24, 2021 8:03 pm
I don't know if I can keep up with my sister anymore. I wish my Dad had sorted something out for her in the long term. I think everyone knew there was something not quite right with her but nothing was done about it.
So the neighbours are having some work done in their house (not the nasties, the other side). Each time a hammer is banged or a drill is whirred, she has to look at the side where the noise is coming from. She swings her head at such force, it's like it's going to spin all the way round.
I've noticed she hordes things too. I was hoovering the house today and noticed she keeps piles of empty cardboard boxes and empty plastic bags and fruit bags in her room. Is this normal?
There's loads of other stuff too I have noticed. Initially I thought she was just a lazy bugger and could never be bothered doing anything but I am now realising there is something else the matter with her. I've mentioned it to Mum but I think she more or less swept it under the rug!
I think the ideology is that when Mum is no more, I will remain here and carry on looking after her and the other sibling. No ******* way, I will escape as fast as I can. I do feel sorry for her and the sibling but I'm not their parent and I am not the only sibling so they can't expect me to do everything.
Posted: Thu Jun 24, 2021 8:20 pm
I think you should plan your exit strategy immediately, have your own home, keep an eye on mum, but be her care "manager", making sure she is OK, but not providing hands on care. Only this will make everyone realise how much you have been propping the family up.
It's time for you to exert your authority too, you are effectively the head of the household. Insist on no food in sister's bedroom for a start. She needs support, undoubtedly, but she needs "someone", it doesn't have to be you.
I'm afraid you are going to have to be very firm with mum too.
Posted: Mon Jul 11, 2022 7:57 pm
OK. I've been a really bad person and I feel ashamed of myself.
There's been times when caring for the family, having COVID and dealing with the c***s next door has gotten too much for me. At times, I have lashed out at my sister (learning difficulties and mental age of a small child) and called her every swear word under the sun.
I really regret the outbursts but the way she is just ends up winding me up. It's not her fault for how she is and how she acts but equally, she should not be my entire responsibility. Her idiot Dad knew there was something wrong with her but never did anything about it - kept her cooped up at home, never let her out, she just watched soaps and did nothing else. Well he went and bloody died 10+ years ago and now it's on Mum and me now.
I just ended up shouting at her - called her a silly bloody b***h and to start acting her age - she was sat in the front room, randomly stood up, went to peer out of the peering glass in the door, sat down, stood up, sat down, randomly walked across the room, got on all 4s and started poking at the cupboard and then sat down again.
I begrudgingly cook and clean for her. I ignore her as I do not have time for her but sometimes she just really winds me up.
How she has got through this many years without the GP's / professionals picking up on anything is beyond me. How is it possible? Am I missing something here?
Posted: Mon Jul 11, 2022 9:04 pm
As the mum of a 43 year old man, brain damaged at birth, with severe learning difficulties, a very much loved member of the family, but I can't care for him full time. He lives in a rented flat with carer support.
By the time he was 16 I was utterly exhausted, 14 lots of antibiotics in 12 months. GP insisted that Social Services fund a boarding school placement, then college, then residential home, then his flat.
I understand your frustration. My eldest son is 2 years older, I always did my utmost to help him as much as possible, but it's hard for him too.
What you are doing amounts to domestic abuse, not because you are a bad person but because you are on the verge of a breakdown, never having been free to choose what to do in your life, because of your parents inability to help their child.
It is time to break this circle of frustration.
Start by asking Social Services for an advocate and an urgent face to face Carers Assessment.
YOU are NOT responsible for your sister. If your mother cannot or will not take responsibility for her, then Social Services can give her support. At the moment, it sounds like she needs Emergency respite.
Posted: Mon Jul 11, 2022 9:46 pm
My only concern is she can present well and that's why I think the GP's have just let it slip. I will follow up this emergency respite thing. Do I just phone social services?
I don't think she would ever be able to live on her own. She normally wakes up at 6am and goes outside without a care in the world about any danger she puts herself or anyone else in. She does nothing at home, doesn't help with a thing. If and when I am cleaning, she hotsteps it into another room so doesn't have to do anything.
Do you think I could get locked up for domestic abuse? Is this my exit plan? I just don't see any way out other than this.