This is my first post on here, i’m a carer for my younger brother who has several disabilities including a terminal heart condition and mental delay.
I’m looking for some advice / options to help support my brother in the future, once my parents are too old, have passed away or are unable to help take care of him anymore. The general consensus is that i will become his solo carer with some additional help from my boyfriend but the thought of taking care of him on my own is terrifying. Its gotten to a point that it has started affecting my mental health and my anxiety is higher than ever.
I’ve been trying to find some daycare options to not only give myself a little breathing space but also so that he can socialise and have some time away from me, but it seems that every option that i have found is aimed either towards older adults or those that are trying to build skills to help them towards living alone which is something that will never realistically be an option for him. He requires one on one care at all times and is unable to fend for himself.
Has anyone else here had to deal with something like this? If you have any suggestions or advice at all i would be more than happy to hear it
The first thing to do here in order is to request a social care needs assessment. Contact the local council first thing in the morning to start the entire process. Consider his interests too. Do also make some brief summary notes. Good luck. Smile as you can do this. Once this is all over breathe in and out deeply. Be totally honest with them as far as possible.
Prepare a mini information sheet detailing his disability and personality. Trust your gut instinct. Do your research. Take a good close look at a few care home sites to see what they can do. Otherwise call up or email them to book a viewing slot in addition to tour the whole place in question. Find out as much as possible in advance. Read past the lines of the official care home report to discover everything.
Is your brother known to social services already? Does he/your parents get any support at all?
If not, then he would need a Needs Assessment for social services you can read about it here: Needs assessment | Carers UK
It would be wise to get the process started so that your brother get’s used to receiving support from others, if he is only used to you and your parent’s supporting him.
Due to his heart condition he may be entitled to joint funding NHS and social care or even all health care funding - Continuing health care.
Social care loves objectives and goals but for someone with severe or profound developmental delay then these could reflect his level so don’t worry too much about that.
The kind of thing you would be looking at would be a day service - some are council run and some are privately run; however, quite a few never reopened after the pandemic or a support worker coming into the home to support him there or taking him out and about.
If you don’t mind asking; roughly how old are you and your brother and when do you foresee your parents being unable to care for your brother? Being your brother’s sole carer with a support from your boyfriend, whilst very commendable is a huge commitment - how will you support yourself or have any time off or time for your relationship? Is this what you really want to do? Or would you be better finding supportive living or a small group home or a Shared Lives placement or similar for your brother - with you still being his involved with his care but more as an overseer and advocate for him and the fun big sister who still has energy to take him out and have him over to her house? Just consider all your options.
Welcome to the forum. My youngest son was brain damaged at birth 44 years ago, fit as a flea, but can’t read, write or do any maths. He now lives away from home, as I have health issues. You have an absolute right NOT to care. My oldest son knows I would like him to keep an eye on his brother, but nothing more. Your mum is being hopelessly unrealistic, Does she not realise that before she dies she too will need some sort of care? Will she expect you to do that as well??? I would suggest you and your partner move away asap. You have a right to a young and carefree life, with a family of your own perhaps one day.
I hope you’re managing to get a little time to yourself, to step away from all the pressures, and relax a little. I hear the anxiety and pressure in what you’ve written.
I do not have direct experience, unlike others in the forum who have offered their suggestions like @Melly1 suggesting the assessment and day service. I hope that social services & your GP are aware & appropriately follow up on your brother AND also your parents.
However, I wanted to respond because the words you used ‘The general consensus is that …’ struck me. May I ask ‘who’ exactly has made this decision for you and did you FEEL you had / have a full vote and could speak up in terms of what you want? Have you (ever) allowed yourself the thought as @bowlingbun has put it, to have your OWN decisions and future desires?
I’m sorry if this may be a sensitive subject and causes more anxiety. However, in my own culture, there were some expectations and opinions voiced. I was lucky that my parents empowered me and wanted me to be as independent as possible. BUT some people’s culture and upbringing can feel like prison bars.
In addition to the very practical advice given, may I ask if you have a good friend or family member who really understands you & the situation, that you can trust to support you and be an advocate for you within your immediate family ‘decision’ dynamics? Finding support services & the advice given is important. Also taking a bit of time & space exploring your options, with people you trust and feel safe exploring options with would be ideal, & with someone with similar/same cultural reference points if this is part of the mix.
We all know that services and support can be fragmented and patchy across the UK. Whilst you pursue the assessment etc. and literal care options, my advice would be to try to explore how you can support your own path, evolving your mental health and wellbeing as things change so that you feel you have 100% ownership and voice in decisions concerning your future. AND that if you do choose to care for your brother - in whatever form that is re. time, overseeing others or doing it yourself, etc-, you feel mentally prepared and at peace with the decision, to do so.
Thoughts, prayers and empathy to you.
You are in my prayers. Chiming in again, perhaps see if you qualify for financial assistance as well. My caree gets DLA which is paid into my own bank account each time. But since he is much older apply for personal independence payment in order to make things easier. Citizens advice can help with this part, feel free to take a look at their website, email them or call up in the morning to start the ball rolling. Best wishes. If you need any further help with the forms message me on here. You can do this.
Also find out more about classes and courses. Your local council website is a good initial starting point in addition to do further research. Try looking online. Make some brief summary notes. Otherwise maybe contact a few different local adult education providers to inquire.
You can then send out a bunch of emails to speciality interests clubs, groups and societies too. Call ahead to discuss your course options. Get hold a printed copy of their latest course brochure to read at home on your own. Read past the lines. Consider your own hobbies, interests and skills as far as possible.
If you love baking find a one day class for now. If you love sports approach your local leisure centre about attending daily fitness classes.
A friend of mine son is in the same boat and it has taken his parents a length time and many heated meetings to get him in a place to socialise with other he knows. If you and your boyfriend are worried about looking after your brother it might be worth looking at a frim that looks after disable people in different housing scheme where they do take the pressure off you. Good luck.
Welcome to the forum, Urgirldidi!
I’m going to start by asking a few questions. The first ones are quite personal and for you to answer honestly to yourself, not for us to know.
What do you want?
Have you talked it over with your boyfriend? What does he want?
Do you know that you are not obliged to care for your brother if you don’t want to, or don’t feel able to?
Okay. Whatever you want to do is the starting point to work from, and if that’s “I don’t want to care for my brother at all” - then you have that right. And that’s where you start from. Because you have to think about what you want and need first: it’s the only way to make sure your needs are considered by anyone else.
There are various options that include care homes, but there are also supported living opportunities. As an example, my son is in a supported living environment. He’s encouraged and supported to do as much as possible for himself, but under supervision (a necessity) and in some cases having things done for him where he would otherwise put himself or others in danger. He is not expected to suddenly become self-sufficient, although his skills in some areas have increased. He still needs supervision. You said your brother has a terminal heart condition: assuming that’s a degenerative condition, it might put him in a position where supported living is not such a good idea. Something to think about, rather than worrying. It also might mean that some of his funding may come from the NHS, but there’s no point in going into detail about that just yet.
Write down what your understanding is of your brother’s conditions and what he needs, before you even pick up the phone to your social services department - you need to know what you want to say beforehand in case you get flustered - then it will be on paper in front of you, so you don’t forget anything or get stuck.