I help care for my brother who has a learning disability. I worry so much about the future, as my Mum will be 80 this year and is slowing down. Mum and I both work together to take care of my brother. I have had ongoing mental health problems, with severe anxiety and depression. I have managed to work part time and keep my job. I am so anxious about if and when my Mum passes away or no longer is capable of taking care of my brother. I know that I couldn’t maintain the care long without her. Mum doesn’t want things to change in her lifetime, as she wants to care for him until the bitter end. When I bring the topic up about future care of my brother, I am told that it’s my medication that is making me talk that way or people are putting ideas into my head. My mental health conditions are always blamed, while I feel that what I am saying is a legitimate concern.

Hello & welcome

It’s OK for Mum to have her wishes but she needs to understand. You don’t intend to continue when she is no longer around.

How old is your brother? There needs to be a needs assessment(social services) for when your brother may need support. A care plan can be put on file and updated as and when. There are Mencap homes which on the whole provided excellent support accommodation. You can look into this in your are. Mum doesn’t need to be involved.

This would be good for both Mum and brother. I suspect Mum will reject the idea.

You can have a carers assessment which doesn’t need include anyone but you. In an ideal world Mum should a needs and a carers assessment.

So the bottom line is Mum can basically do as she wishes. You on the overhand can also do as you wish. So you need to find out about support services in the area for brother.

I get VERY annoyed with mothers like yours, who want to care for their son or daughter to the bitter end, without any thought of the consequences for the long term wellbeing of the son/daughter. Even worse, the idea of dumping the problem on another child!

My son was brain damaged at birth, can’t read, write or do any maths. I’m approaching 70, with health issues. He moved out of our home when he was 16, as a result. I have supported him throughout, his transition, able to tell staff his likes, dislikes. etc. etc.

He now lives 15 miles away, in his own flat with carer support, and he is rightly very proud of it. He comes home for the weekend every 2-3 weeks. He has worked out, with support, how to wash and dry his own clothes, fold them, put them away. He likes cooking, travelling, all sorts of things. It’s not perfect, what is, but I know that when I die, he will be well looked after and his life really won’t change that much.

My eldest son knows that I don’t want him to care for M, but I do expect him to keep an eye on him.

Talk to the learning disability team at Social Services and explain your concerns.
Have they ever done a Needs Assessment for your brother, is he receiving the right benefits, or is he stuck in perpetual childhood?

It’s easy to fall into the trap of caring to the end. The oldest carer I ever worked with was 97 when she’d realised she couldn’t continue caring for her learning disabled son, who was then in his mid-70s. They both went into separate care homes.

Another died, while his disabled son (who was non-verbal autistic) was in the house. Wnen they were discovered, the young man was so badly dehydrated he was hospitalised. Much longer before discovery would not have been good news.

Thing is, situations are preventable but they’re scary. They involve the unknown. Who will provide the care? What sort of horror zone will it be (after all, there are so many bad stories out there)? So some parents shut down the conversation. “I’m alright,” “I can do this for a long time to come yet,” - or they use other methods that guarantee to shut it down - “who have you been talking to?”, or “Have you taken your meds/is your mental health playing up?” - anything to avoid the topic.

Simple response: raise the subject a different way. Ask Mum if she’s written her will. Talk to her about planning for emergencies. In my job I always used to tell carers that you can plan for nice things but eventually the bad stuff will always happen, and you need to plan for that.

Example: My youngest son, who has autism, was due to stay with us for five nights while his kitchen was upgraded by his landlord. We arranged his care support to make sure he had plenty to keep him occupied, and set up a backup plan that if the kitchen took longer for any reason, he’d stay a full extra week until his Christmas plans set in. Staff were prepared and we got on with it. When we heard from the builders that the wiring in the kitchen had proved unable to cope with the changes, it was agreed that they would take a couple of extra days. We agreed with everyone that the backup plan would come into play. So we got the job of telling Mike. He was not thrilled. But once he realised we had a “plan B” that he could see meant no real disruption to his Christmas plans with a little help from Mum taking him in the car to fetch his Christmas presents to us, he settled down.

If we hadn’t planned for it…we’d have had to rush round and ask Mike’s care team to change all their plans, and if/when we got agreement we’d then have to tell Mike, who would have picked up on the stress the moment he walked in, and he would have been a lot more difficult to settle.

So your could try talking to your Mum about being prepared. It’s not just for scouts. It makes it easier for everyone. Maybe start with a grab sheet for hospitals for each of you. Something that gives a short medical history and lists the current prescriptions. You know how hard it can be when you’re worried about someone and the hospital staff ask those questions. If it’s all written out beforehand, you can simply hand it over. I suggested that to my Mum years ago and she always had a printout in her purse about my Dad’s many conditions. She sometimes carried more than one and found it much less stressful than trying to think of things in a busy A&E. Maybe you could set up a hospital grab bag for each of you. Decide what needs to go in it. Then go on to the heavier stuff.

Mum’s not getting any younger and she needs to think about what she wants to happen to her son when she’s gone - and that has to take your needs into account. You have every right to say that you’ll be there to sort things out with social services but that you won’t be doing all the caring for him, that you have a life. It’s a tough thing to do, and you may need to get some help with that, perhaps from a social worker. It won’t be the first time they’ve come across this sort of thing.

Whatever you do, whatever you decide, remember that you’re doing the right thing for you, and that’s perfectly ok.

I just want to Thank you so very much for taking the time to reply to me. It means a lot to me and I have found what you all said encouraging.

I got some good news yesterday. My brother has been matched with a suitable volunteer to take him out for 4 hours per week. This took almost 2 years to get organised with Covid happening and the time it takes to find a suitable volunteer. The social worker called yesterday and we should meet the volunteer next week. All the necessary checks have been made. Mum has agreed to this, as the social worker got her on side and approached her in the right way. My brother is looking forward to it.

My brother has had a complete assessment done by a social worker, which means all that paper work is done.

My Mum has a suspicion of social workers. My brother is 45 and she has never let him go into any sort of respite care. He has never spent a night in anyone else’s care, except when he has been in hospital. The last time he was in hospital, we were allowed to stay with him prior to his operation but that wasn’t possible when he went to another ward to recover. He managed to stay on his own fine and actually was able to alert staff when another patient went unconscious.

Just four hours for a VOLUNTEER??
What a cheapskate that social worker is!

Have you seen a copy of the assessment?
Did mum have a Carers Assessment too?

My son’s care package is 4 hours of day service, plus 4 hours dom care in the evenings and 7 hours every Saturday and Sunday.

I also meant to say that I think that my brother is frustrated, as he is at home all the time with my Mum. I think that he could be doing so much more with his life and he could become more independent but still be cared for in supported housing. This would take the pressure off me and allow me to have a life of my own. Then, I would be in better form to support him. Anywhere, I go socially, he comes with me. The only time that doesn’t happen is when I go to work in my part time job.

I am so glad that your son is getting that level of support. Sometimes, I feel it is like the Stone Age in Northern Ireland when it comes to the social care sector. People only get any help when they are practically at breaking point. Mental health services also lag behind in NI, in fact the whole health and social care sector lags behind, as a result of underfunding and a lack of reform. There are some amazing people working in the health and social care sector in Northern Ireland, but they are overstretched and underfunded.

I agree four hours a week is quite shocking! That should be at least three to four hours daily. However, it’s a starting point would keep a diary of the hours activities. Find the most positive bits and get the volunteer to build on it. Social skills should be built in to the time spent i.e. purchase an item in a shop, ask a question at a venue etc etc.

Reading between the lines, it seems to me that the social worker has had to work hard to get your Mum to agree to anything, and that this is only going to be the beginning if it all goes well.

My Mum was the same about social services, and so are many older carers. They all had long experience of things going wrong and of glittery unicorn promises that turned out to be donkeys covered in - well, you get the idea,

The volunteer thing isn’t necessarily cheap: while the volunteer’s time is free, their supervision, training, support and DBS checks are not. But for some volunteers it’s a good way to get into a line of paid work with good references and an idea of whether they could actually stick at it without risking their benefits. And these guys tend to be more motivated, I’ve always found.

Hope all goes well for you and that this is really the start of more help and your Mum finally learning that it’s ok to let go.