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New to caring - Carers UK Forum

New to caring

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Hi all,

I have recently been thrust into a carer's role. In breif my dad passed away recently, he and my mum lived with and were caring for my brother who was born with a rare hereditary neurological disease called congenital mirror movements syndrome. My brother is now 30 years old, when he was in his early teens he was diagnosed with a learning disability. Also was diagnosed with severe depression (probably due to the fact that he was severly bullied during his early teens) and has been on repeat prescriptions for it since his teens.
My brother had involvement from social services as a teenager but hasnt had any contact with soc servs or the G.P since 2005. He is housebound, thinks that the whole world is against him and doesnt want to go out or meet new people.

I hadnt had a relationship with my family for over 10 years as i left home at 15 due to being physically abused by my brother. Since my dad passed away i have been caring for my mum and brother as my mum has alot of physical problems and she suffers from OCD, she cannot look after my brother on her own and there is no other family that can help. I am currently trying to get an assesment for my brother from adult services so that he and my mum can get help.

If anyone knows anything about the type of help that might be offered please let me know your thoughts. My brother needs help with bathing and toileting and he cannot prepare food for himself. He also needs mental stimulation to cope with his depression and he only seems willing to talk to anyone about computer games as thats all he's done with his time for the last 20 years.

I have become very depressed. Before I found out my dad was dying I had no idea how my family were doing and I was taking counselling to help me deal with my childhood trauma and now im having to put all that aside for the sake of my mum and brother.
Its so hard but i wouldnt be able to sleep at night if i wasnt helping them. They have been imprisioned in their flat for so long and they really need my help.

Thanks for listening,

Hi Sare

I really think that the professionals should be assisting you. It all sounds like such an awful lot. When you speak to professionals always give details of "worst case scenario". Dont give any details of any good days there may be. Make sure that they know the past problems and that you need help with that before you go any further into caring. There is no legally binding rule that says we have to care for family members and assuming that the brother who abused you is the same brother you now have to care for. That would be unacceptable to me but perhaps you have more than 1 brother. When you contact Social Services impress on them how urgent it is that they get on board.

Little Lamb
I can only second what Little Lamb says.Oh,and welcome to the Forum. Image Image Image
I'm with Little Lamb on this one and welcome. If you need help, support or just to let off steam, there's always someone here to listen and advise Image
Hi there Sare, Just wanted to pop in and welcome you to the forum!

Very valid points from Little Lamb. My advice would certainly be to get on to Social Services as soon as possible.

Take care Sare.

Bell x
I was very concerned to read your post. Firstly, your brother is NOT your responsibility. Given the history between you, it would seem entirely inappropriate that you are expected to be involved with him at all. There are many different services available to both him and your mum. You need someone on your side. Depending on where you live, it might be someone from the CAB, Princess Royal Trust for Carers, or a Carers Centre. I would suggest that you get in touch with Social Services and give them a date, in writing, when you will no longer be caring for them. I have a son with severe learning difficulties who lives alone, with carer support. My mum is so disabled she cannot even brush her own hair or make a cuppa for herself, but she too lives alone, with carer support. In each case the care is arranged by the local authority. I now have some health issues so I keep an eye on both of them, and my son comes home alternate weekends. I hope this helps in some way, feel free to send me a Private Message (PM) if you like. Take care.
A huge thank you to everyone for your advice and support.

I have just filled in an assessment form for social services so I'm hoping help is on its way. Will definatley call the CUK advice line too.
Yes I was abused by the same brother as a child. Its hard but I now understand why he use to hit me and it actually makes me wanna help him even more. My parents never got any proper help for him they just accepted the fact that he was born ''mental'' (their words not mine) and just thought they had to look after him in their flat alone forever!

Don't know if anyone feels the same way but i feel like even when I'm not there looking after mum and bro physically, I'm always worrying about them, can't stop really.
You sound amazing, your family is very lucky, just do what you think is best for all of you, and that includes you, and I am sure that it will all come together in the end. And yes, I am sure that most of us recognise the worrying when we are not present, I tried leaving my mobile at home to stop myself constantly listening for it and checking it on the rare occasions I went out and then found myself jumping and listening to see if the call was for me every time a landline where I was rang Image .
Hi Sare,

Just wanted to say hello, and glad you've found the forum. I hope you get the help you need from Social Services, keep us updated.

Best wishes,
Hello and a warm welcome from me too. Its hard to know what to advise. In many ways, you know your situation very well indeed and have a good idea about how things affect you and what would help both you and those you care for. Making things happen and getting help is not always easy of course. Going it alone is a very tough ordeal, like trying to get a river to run uphill..... Please speak with Adult Services and tell them the situation and ask for help. be honest about the history and relationships. You are important in all this so dont pretend things have always been rosey. I am quite certain that you will be offered support, and wise counsel that will be a help.

I am very sorry things have been tough for you. But I am very pleased you have joined us here. An important step in getting things under control and getting support for what you are doing.

I wish you well, Sare.

Robert Image