Being an adult sibling of someone with a lifelong disability can be a complex and challenging experience. Whatever your situation as a sibling – you’re not alone. It can be tough trying to find the right information online and at Sibs, we’re here to help you. These are the questions we’re most asked by adult siblings. We’re still adding to this page and really appreciate your patience as we build it. If you’d like to help us develop our website and written resources you can join our Reader Panel.
Many adult siblings are used to coming second (or third, or fourth…) to the needs of their disabled brother or sister(s). It can be hard to prioritise your own health and wellbeing. But self-care is not an additional luxury – it’s an absolute necessity. That’s why we have listed these resources first.
Where can I meet other siblings?
You can join one of our friendly online peer support groups for adult siblings. Find out more and sign up here.
I have a lot of feelings of guilt, worry or anger as a sibling
You’re not alone! This is very common for siblings. Read our advice on coping with feelings here.
I'm struggling with my mental health
Some siblings live with stress, anxiety or depression for a long time – too long, in fact, because they feel like it’s an inevitable part of their lives. It doesn’t have to be. There are a whole range of treatments and support available.
- We appreciate that in some areas booking a GP appointment can be really challenging, however we strongly encourage you to see your GP and talk through your symptoms. If you are a carer for your disabled brother/sister make sure your GP knows this too, as local support may be available
- You may also be interested in our advice on how to find a counsellor
- Apps like Calm and Headspace
- Find out more about mental health at mind.org.uk
I need urgent mental health support
You are not alone – reach out for support:
- To talk about anything that is troubling you, call Samaritans on 116 123 any time of day or night or email firstname.lastname@example.org
- Prefer to text? Use the ‘Give us a shout’ text service. Text ‘Shout’ to 85258 to talk about your feelings, at any time of day or night
- CALM (for men). Phone line 0800 58 58 58, open 5pm – midnight. Webchat service here
I’m only just starting to think about my experiences as a sibling and my life growing up. There’s a lot to think about! I’m not sure where to start
You’re right, there’s a lot to think about! When an adult sibling finds Sibs they often say “I never knew there was a charity for siblings!” and feel really surprised to learn that they have needs too. They might also feel a huge sense of relief, as if part of a jigsaw puzzle is slotting into place. Growing up with someone who has a lifelong disability will shape who you are, in the same way that any experience does. You might find it helpful to explore this more:
- Read about the positives and challenges of being a sibling
- Download our eBook, ‘Self-care for siblings’
- Read real-life experiences from other siblings
Take this a step at a time, as it might feel overwhelming to read it all at once. You might also find it helpful to write or draw about your experiences, talk to a trusted friend or join a sibling support group
Where can I find a counsellor who understands what it's like being a sibling?
This is a good question to ask, as all counsellors are different and it’s important to find someone you feel comfortable with. Read our advice on how to find a counsellor here.
My disabled brother was abused and and the impact affected me too
You are not alone in feeling impacted by this. As one sibling told us, “[The abuse] was like an explosion that rippled outwards – it affected us all”. As an adult sibling you may be a key support for your brother or sister through this very difficult time and it is important that you look after yourself too. Read more advice for siblings on dealing with trauma after abuse here.
I'm struggling to maintain my physical health
Many people find it hard to take up and continue a healthy lifestyle and this can be especially challenging for siblings because of the competing demands on their time. But looking after your physical health is one of the best investments you can make in yourself – and it doesn’t have to be the most time consuming.
- Speak to your GP about any ongoing or new health conditions that are troubling you – don’t ignore them
- The NHS website ‘Better Health’ has some realistic and useful ideas to help you lose weight, quit smoking, get active and drink less
- Want to improve your Sleep? Apps like Sleepio (based on Cognitive Behavioural Therapy) can help, even if you work shifts looking after your brother/sister
- You may be able to track your progress on an in-built app in your phone, or using an app like MyFitnessPal
Questions about the future are some of the most common we receive at Sibs. Many siblings feel worried about their disabled brother or sister’s future at some point, whether this is an ongoing worry or it occurs when there is a change in the family. It can feel overwhelming at times. It’s important to know that you’re not alone and that there is a lot of information and advice out there to help you plan.
Do I have to look after my disabled brother when my parents die?
No. You have no legal responsibility to care for your brother. It is your decision whether you become involved in his care or not.
Some siblings feel that the role of keeping an eye on their brother or sister is automatically left to them, upon the death of parents. Siblings may find themselves changing jobs or moving house, in order to live closer to their brother or sister. It’s important to know that you do have a choice in the level of involvement that you have. Some siblings may choose to become very involved with their brother or sister’s care, and others may choose not to – and there are many different levels of involvement in between. You have no obligation to have any contact with your brother if you don’t want to. Your relationship with your brother is yours alone – no one can tell you what is right for you both.
Do I have to pay for my disabled sister's care?
No. As a sibling, you have no obligation to pay for your sister’s care. The local authority has a duty to assess your sister’s care needs, and to put support in place if she is eligible to receive it. They will only assess her finances – not yours.
My brother has learning disabilities and there's so much to think about with his future. Care, health, money, housing – how can we plan for it?
Planning for the future can feel like an overwhelming topic for siblings. Write down all your concerns and all your wishes. What would you like for your brother in the future? How much involvement would you like in his life and in what ways would you like to have this? You don’t have to have definite answers – you just have to give yourself space to think about it. Talk to your brother (if appropriate), your parent(s), a trusted friend, do research online or seek counselling.
There’s a really useful guide called Thinking Ahead: A Planning Guide for Families. This downloadable resource available from Together Matters, covers all aspects of future care in manageable chunks. There’s also a version for your brother to use if he is able to, called I’m thinking ahead. Whilst this guide is aimed at families of someone with a learning disability, many others may find it helpful too.
I want to talk to my Dad about my sister’s future care but he refuses to discuss it. How do I get a conversation started?
If your sister is still living with your dad – and always has done – it may be very difficult for him to imagine a time when she will not be there. It’s a really tough topic to address. Approaches you can try are:
- Little and often. There is a lot to consider with future care so break it down into small chunks. For example, ask your dad one question per week. Take care over the time, place and way that you bring up the topic. Change takes time. Try this over the course of a year.
- Come back to it at a later date. If you feel the little and often strategy isn’t working, wait a while before raising the topic again. This may feel counter-intuitive and exactly the situation you are trying to avoid – but people take action in their lives for different reasons. It may be easier to engage your dad in a discussion when there has been a change in the situation e.g. your sister’s needs have changed, or your dad’s ability to cope or provide care has changed
- Identify someone else who can raise the issue. There may be someone else who can start the conversation with your dad – another sibling, another relative or a trusted professional. They may be able to raise the topic whilst you are with your dad or they may be able to persuade your dad to talk to you about it.
I want to leave home for university – but I’m afraid of leaving my mum to care for my disabled brother and my two younger sisters on her own
It’s important to remember that you need to make the best decision for you. If your brother needs more care and support, this needs to be assessed by the local authority. You have no legal responsibility to care for your brother. Staying at home to care for your brother – at the expense of leaving home to follow your own interests – may result in you feeling resentful towards him.
If you choose to go to university, remember that:
- You can come back and visit. When you do, you will be more likely to spend positive time with your brother and you will have new experiences to share with him
- You can keep in touch. If your brother isn’t able to keep in touch by phone, email or facetime – send something in the post that you know he will enjoy, such as a photo or a bar of chocolate
- You can find support. Connect with other siblings at your university, set up a support group and make new friends. You are not alone in feeling this way
There’s no one else to look out for my disabled brother, so it’s down to me. I really resent this situation and I don’t want to do it. But if I walk away, I know I’d feel guilty.
You’re not alone! Many siblings in this situation experience resentment or guilt. It can feel like being between a rock and a hard place where neither choice feels like a good one. Some siblings feel angry that this is the life they have been given and that they have had no say about being placed in this situation.
Some siblings feel that after their parents die, they become ‘next of kin’ and have parental or caring responsibilities for their disabled brother or sister. This isn’t the case. Siblings have no legal responsibility to provide care and support.
It doesn’t have to be an all-or-nothing situation. Try and find a way that works for you without the resentment, by just doing what you can. What tasks a sibling can and cannot do needs to be a discussion between the sibling, their disabled brother or sister, and adult social care.
Don’t feel guilty for saying no to tasks that you don’t want to do. You are taking care of yourself and in the long run, this is a much better decision for both you and your brother. In fact, it’s vital.
Remember – it’s OK to have your own life.
You might find it helpful to chat with other siblings who feel the same about this. Join a sibling support group here.
I’m finding my brother’s care home hard to work with and I want a better relationship with them
Here’s our advice for building a better relationship with care home providers:
- Be confident. You do have the knowledge, you do have the expertise and you have built up years of experience on your brother or sister’s medical, behavioural, communication and personal needs.
- Build relationships with the people who acknowledge and support you in your role as an advocate or carer for your brother or sister e.g. a strong relationship with an epilepsy nurse will be helpful if care home staff struggle to recognise seizures.
- Communicate clearly with managers who are ultimately accountable for your brother or sister’s care. If things go wrong, a good manager will take responsibility and work with you to make changes. Be assertive, not aggressive – this will get you better results.
- Be kind to support workers as they have a difficult job and often receive little recognition for their role. Thank them when they go the extra mile. They will be more likely to do it again in future and build a positive relationship with your brother or sister.
- Know the difference between a personal mistake and a poor culture. Mistakes will happen – we are all human. It’s important to recognise the difference between a personal mistake that someone takes responsibility for, and an organisational culture of poor care, neglect or abuse. If the latter is in effect, take action and make a formal complaint and report safeguarding concerns.
- There are ways you can be more assertive. You may find that it’s difficult to put your point across when you’re face-to-face with people. Send an email in advance or jot down relevant points to take with you. Take a friend, and ask them to remind you of the points you want to make. Just having someone with you can boost your confidence to communicate your views. They can also help by taking notes of what was said in the meeting.
- Know that you can change providers if the organisation does not meet your brother or sister’s needs. Even if you have been told there are few providers in your area, it’s important to tell adult social care that your brother or sister’s needs are not being met by the current care provider.
I oversee all of my sister's care and she's not getting enough support. I keep telling the social worker this, but I'm being ignored.
It’s really frustrating when you’re not listened to as a sibling, and it’s not acceptable. You have such a valuable role in your sister’s life and you deserve to be heard. Here are some suggestions for tackling this:
- Be specific about what help your sister needs. For example, don’t say ‘My sister needs someone to check in on her’, say ‘My sister needs reminding to brush her teeth and take her medication every day’. Read our guide on getting a care needs assessment for more detail.
- Don’t let somebody tell you that you are not allowed to give your opinion as a sibling. As a close family member with an active interest in your sister’s wellbeing, your opinions on her care should be heard.
- Get support for yourself. The phone calls and letters can feel endless at times – make sure you take some time out for yourself too and that you have your own life. You must look after yourself first in order to look after your sister.
- If you want to make a complaint, do so in writing and be clear about the outcome you would like for your sister. Keep a record of your complaint and consider taking your complaint further if your complaint is not resolved. Read our guide on making a complaint for more detail.
What support am I entitled to as a sibling carer?
As a carer for your disabled brother or sister, you can request a carer’s assessment from the local authority. This looks at your needs as a carer, not at your brother or sister’s needs (if your brother or sister needs more support, ask the local authority for an assessment of their needs). The carer’s assessment should look at what support you need to keep caring, such as respite breaks.
Find out more about a carers assessment from Carers UK
Other types of support for you as a sibling carer:
- Join a sibling support group
- Search online for your local carers association
- Find support on facebook groups relating to your brother or sister’s diagnosis.
What benefits can I claim as a sibling carer?
You might be able to claim Carers Allowance if you’re looking after your brother or sister for 35 hours a week or more. Use the Turn2Us benefits calculator to make sure you are claiming all the benefits that you are entitled to. It’s advisable to do this once a year, as benefit guidelines do change or your circumstances might have changed. Find out more about Carers Allowance from Carers UK here.
What rights do I have as a sibling carer at work?
At work, you have statutory rights and contractual rights. Your statutory rights are the ones that are written in law. Your contractual rights are the ones that are written into your work contract.
As a carer, you have statutory rights to:
- Time off for caring emergencies
- Request flexible working
- Protection from discrimination
Find out more about your rights as a carer at work from Carers UK
It’s advisable to look back at your employment contract or speak to your employer about their policies in this area.
My brother has learning disabilities and autism. He hasn't had an eye test for years, but really needs one. Where do I start?
You brother is not alone – adults with learning disabilities are 10 times more likely to have a significant sight problem, yet much less likely to have eye tests or access the necessary prescriptions and treatments.
SeeAbility is a charity that promotes eye care for people with learning disabilities and autism. Their website has a wealth of helpful information, including:
- Easy-read fact sheets and advice
- A database of opticians’ practices who have experience of providing eye tests to people with learning disabilities and autism
- Eye care champions who can advise or signpost
Can’t see you question above? There are hundreds of pages of valuable advice and information in our guides for adult siblings.
You can also:
- Download our eBook, ‘Self-care for siblings’
- Read real-life experiences from other siblings
- Join an online adult sibling peer support group to meet others
We’re still adding to this page and really appreciate your patience as we build it. If you’d like to help us develop our website and written resources you can join our Reader Panel.