Hello to everyone: I'm new here so just wanted to say... - Mencap

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Hello to everyone

Stevens-Sister profile image

I'm new here so just wanted to say hello.

I started caring for my disabled brother October last year as our Mum passed away from cancer. He was in my care from June when she first became unwell.

We were always close so it was easy to continue with his care but to be honest I have never felt more alone this past year.

He has a severe learning disability that no one has heard of LOL and lots of health issues as well.

I have a wonderful Husband but the rest of my family have carried on their life as normal yet ours has been turned upside down.

I am at a stage in my life where my children have grown up and left home and am very financially secure and was travelling around the world (pre covid) and now all that has gone.

Our older Sister provides no support at all and just sends a weekly text of 'How's Steven?' I've started replying with one word!

As he moved local authority as well we have been without any support since Oct. We have finally been appointed a social worker but so far that has consisted of a 10 min visit and a referral to a day centre that is still closed.

She also gave no help with reference to legal guardianships etc.

I'm sorry if I have moaned a bit, I love him dearly to bits and would never have not cared for him but its very difficult.

Thank you for listening to me x

21 Replies

Hi it your the carer and your brother is living with you, your social services should have offered you a carers assessment as your needs are important too. Also contact the carers association to see what they can offer. Are you getting any benefits for your caring role, if your brother lacks mental capacity you can apply for deputyship for him online on the government website if he has capacity which it doesn’t sound like he does you can get a lasting power of attorney for him for health and well-being and property and finance. I’m guessing your an appointee for your brothers benefits ??? If I can be of any further help please do ask and the Mencap helpline is always a good place to start as well. It’s such a lonely quest when your family aren’t very supportive I know only to well so no question is to stupid and where always here to offer support in anyway we can. Caring is not easy and I’m sure your doing the best you can for your brother in these difficult times so never ever forget that he’s lucky to have you.

Hi Jofisher.

Thank you for your reply. Yes he lives with me and my family now. Becoming an appointee for his benefits was the easy bit once I had made numerous calls and a letter to Social Services. I cannot claim carers allowance as I work from home for my own business and although I pay myself a minimum wage even that was too high. They haven't completed a carers assessment for me either.

He does lack mental capacity and was born this way. I have just started looking into the Court of Protection as he often has to go into hospital and although my Mom always signed on his behalf she never had any legal docs to back this up. I don't want to encounter a time where this becomes an issue although his main hospital where he is treated for kidney and heart problems know us very well and have always been marvellous.

He doesn't have any savings, just his benefits that go into my account.

Thank you for your very kind words. He calls me his gorgeous sister. The other one is just his sister!

😀

You maybe aware of all these things but your brother should be able to get a leisure access card for sports activities etc I don’t know what’s he’s aBle to do, you can also get a C.E.A. Card online which gets you cinema tickets you pay for one carer goes free and you can apply for reduced theatre tickets in most if not all theatres check it out. We have a national trust card for my son also and he has to have two carers so they get in free. I used to buy a merlin card for Thorpe park ect and I was allowed three free carers for that as I got a letter from his doctor to say this was necessary. You can get a short break fund from the carers association if you need. Break away. Your should be entitled to some respite as well and do make sure you register with crossroads because if you ever need to go somewhere urgently or are ill you need to know crossroads can help support for 48 to 72 hours depending on when it’s required. If I think of anything else I will let you know but most membership places allow carers in free. Bless him your brother clearly loves you and appreciates all you are doing and what a wonderful husband to be supportive in this way as there’s a lot that wouldn’t. Thank god for nice people

Thank you for all the time and effort you have taken. He has severe Aortic stenosis so gets very tired easily so sports activities etc tend to be out of the question. He loves bowling, darts and snooker so once life has got back to some normality we definitely want to start going more places. He had to isolate with COVID as he had a kidney transplant in 2018 so is immunosuppressed. He also likes theme parks as well but only the kiddie rides. My Mom never took advantage of any support but then she had me. He did love his day centre before the closed for COVID but now we are in a different council they won’t let him attend the old one if it eventually opens. We are hoping he takes to this new one when he gets there.My husband has always been good with him. He draws the line at wiping bottoms but after raising 2 children you get used to that! Thanks again.

Your welcome good luck with everything the council used to do discos for people with L.D. And all sorts but these things will have to wait until it’s safe here’s hoping it won’t be to long take care

And you. Best wishes.

It’s amazing that you’re caring for you’re brother 😊👍🏻 if you need any advice please do message me

Thank you Natalie

Sounds like your doing an amazing job, your brother is very lucky to have you and your husband. It's not easy and shame on your sister,. I understand as I have an older sister who treat my son who has a severe learning disability like a second class citizen. Consequently we haven't spoken for 12 years since our mother died. It's their loss, hard work but rewarding. Be a nuisance with the social worker and get all the help your entitled to, after all they have been working from home all this time and are well paid, don't be a martyr. Good luck and if you need specific advice or want to have a moan feel free to post on here.

Hi 49Twister. Thank you for your lovely words. My sister finds it so easy to step back, do nothing and have no pangs of guilt. I would never sleep again if I knew he wasn’t cared for like I care for him. The social worker spent 10 mins here, left me a form to fill out for his contribution towards care and promptly left. We have another assessment next week with the centre manager and she sounded lovely on the phone so fingers crossed that goes well. Thank you again for your message.

Hello

I don’t think anyone really gets how exhausting caring for our loved ones is. It’s 24/7 and your life effectively stops. My daughter says she will care for her brother when I’m gone but that’s not what i want for any of my children. I’d want them to look out for him and advocate for him but not care for him full time. My son has severe learning disabilities and severe autism and is at residential college term time . When he finishes we’ll find a supported living placement. When he first went to college the guilt was awful but once I saw how much he loved it I felt better. At the end of college holidays he is always anxious to get back and skips inside his house without a backwards glance or even a goodbye!

You definitely have to be a pain with the social worker. SS will happily leave people who live at home without support. You have to shout loud. Without sounding awful, you legally don’t “have” to house him and you may need to remind them of that.

Hi BenjiB. Thank you for your message. It’s all so wrong isn’t it that you have to fight to get help and especially at a time when you don’t have much fight in you. Steven will never be able to live independently anywhere so I know that he is with me til either one of us goes and that’s hard sometimes. My Husband keeps telling me the same about reminding SS that we don’t have to have him here. I’ve also read that it costs about 2k a month to have live in carers but I don’t get anything for looking after him (not that I want or need anything, but that’s not the point) as I cant even claim carers allowance. Thank you again.

It is hard. I struggled with the decision of residential college as my son has severe learning disabilities and is non verbal. He is so vulnerable. His placement is over £3k a week! He has 2:1 support at all times. I felt college was the perfect stepping stone to full time residential care/supported living. I definitely wouldn’t rule out supported living or residential care. There are some amazing places out there and support will be provided whatever his needs. We are looking at a community environment for after college and I know, yet again, I’ll have to fight for funding. There’s no way my other children are taking on the responsibility when I can’t so I’m trying to make sure we find the very best place for him. You should definitely look into getting a carers assessment done abs keep on at SS. X

My son goes to college in a different county and my nephew (also autistic) lives in a different county but our local county pay the fees.

Hi there. The Mencap helpline will be able to give you lots of help and there may be a group locally you can ask about things specific to your location. I just wanted to say, that after things open up with Covid and you have had the chance to visit the new day centre, if you think that your brother would be happier at the old day centre and you can logistically get your brother there, then don’t just accept that he can’t go ‘out of county’. Find out if the old day centre would, in theory be happy for him to continue there, and if they are then ask for a review of his placement. I would have thought that continuity of provision in light of all the changes your brother has had to adapt to recently would be a powerful argument. (You have to be able to evidence that the old placement best suits his needs so you will have to detail what exactly the old one gave him that the new one doesn’t like staff that know him well, his social network, any specific activities he enjoyed that aren’t on offer at the new one etc). It would be a fight so only worth pursuing if you feel strongly about it. Good luck with everything. x

Hi SpeedyH. Thank you for your message. You make excellent points about his continued care. The leader of the old centre told me on the day of my Mums funeral ( she looked after Steven) that he couldn’t go there anymore and it was unlikely that it was going to open up again due to cuts. He had a sweetheart at his old centre who he hasn’t seen since Oct last year. I’m just hoping that he finds another love at this new centre. He does fall in love easily! 😍 Thank you again x

Hi Stevens-sisterWhat an amazing job you’re doing supporting your brother.

Have you heard of the wonderful charity Sibs? You can find them at sibs.org.uk they have loads of useful advice and local support groups and other siblings who just ‘get’ what it’s like. Good luck!

Hi ApertSibling. Thank you so much your message and the information. I will definitely have a look. Thank you.

Hello Stevens-Sister

Welcome 😀

Oh wow - you have got some lovely replies. Just to echo what they all say so well, you are a wonderful sister and you are doing a great job.

Please do call Mencap's helpline if you would like to talk to one of our trained advisors. You find out more on here - mencap.org.uk/advice-and-su... or just call 0808 808 1111 (or email: helpline@mencap.org.uk).

It is also so important that you get the support you need. Please do see if there is a carers centre near to where you live. They may have an advisor who could talk this through with you, and they will probably know more about support that is available locally.

Finally - have you been in touch with the Sibs charity (sibs.org.uk/)? They support siblings. Please do see if they can help at all.

Best wishes.

Sarah

Mencaps's online community team

Hi Sarah. Thank you for your lovely words, yes everyone has been so lovely.I visited Sibs website earlier today and some of the statements could have been wrote by me.

Thank you again for the welcome and all the love and support sent so far.

Hello. I’ve just joined this forum and read your story. I could have written this!! My lovely mum passed away in April this year from leukaemia, my brother Stephen who has learning disabilities since birth lived with her. He now lives with my husband and I. Mum didn’t look into any form of plan B so I’m starting from scratch with social services etc! Stephen also moved counties to live with us snd he’s had major heart surgery this year after collapsing on New Year’s Eve. It’s a lonely place with lots to try to organise. I’m just starting to get assessments organised for us both with social services and look at all options with what’s best for Stephen in the long term. My brother lives in Canada and is supportive but this is limited as travel is difficult currently.

Stephen can’t live independently so will certainly be with us for a while if not permanently until we’ve explored all options available to us ( if any!).

It’s hard and I feel your pain - family is everything but that doesn’t make it any easier especially when you love your brother and want the best for him but at the same time try to have a life of your own.

Hi AliSwan,

I'm so sorry to hear about your Mum. We are certainly alike, and another Stephen!

Its so difficult isn't it to not only grieve but take on all the responsibility of your brother.

How is Stephen? I hope he has recovered from his surgery. It must be really hard with your other brother living so far away, I have family close by but they choose not to help out which just adds to my anger. I find it so hard to bite my tongue as well( so my husband tells me!).

My Mum would never discuss Steven if anything happened to her, it was always expected of me. My sister, although older, is a train wreck so it always going to be me!

My Dad died 23 years ago this last weekend so it was just Mum and Steven for so long.

He finally started at a lovely centre last week doing 2 days a week so I get 6 hours each day to myself but SS have determined that he can afford to pay £27.00 a week to go here. They don't take into account any monies that they should give to carers for providing 24 hour care and just leave him with the minimum income guarantee of £160 per week. That has to pay for all his food, utility bills, clothes etc but nothing for me. I can't even claim carers allowance. Its disgusting how they treat family carers isn't it?

If you ever just want to have a chat or a moan feel free to message me .

Take care,

Jackie x

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