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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, anger and sadness as a sibling

You’re not alone! This is very common for siblings. Read our advice on coping with feelings here.

I feel so lonely

This is another very common feeling for siblings to experience. Read our advice on coping with loneliness 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 jo@samaritans.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:

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:

  1. 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.
  2. 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
  3. 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:

  1. 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
  2. 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
  3. 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

Can my parents stop me seeing my brother?

“I have a difficult relationship with my Mum, who lives with and cares for my brother who has Down Syndrome. My Mum has stopped me from seeing my brother and won’t let me in the house. I’m devastated. I know he wants to see me. Can she do this?” – Adult sibling

No, your Mum cannot prevent you from spending time with your brother without good reason.

If your brother is over 16, he is seen as an adult in his own right in terms of the law. This means that it is his choice, and your choice, to have a sibling relationship. As his carer, your Mum would need good reason to prevent you from spending time together. For example, if your Mum had evidence to believe that you were a safety risk to him.

Contact Adult Social Care at your brother’s local authority. Tell them you are being prevented from seeing him, and that you believe this is not what he wants. A social worker should intervene, and should support you to have contact with your brother on a regular basis.

The social worker should ask your brother if he wants to see you, not your Mum. If the social worker is unsure if your brother has the ability to make this decision, they may complete a mental capacity assessment. If your brother is deemed not to have the ability to make the decision to see you, a best interests decision should be made. This decision should take into account all the evidence from people closely involved in his care.

You know your brother inside out. You know the way he responds to you when you walk into a room, how he lights up, the way he smiles and laughs when you share an in-joke, a favourite programme or a song. Write down every piece of evidence you have that shows he wants to see you and demonstrates the strength and importance of your relationship. If your relationship is questioned, you may need this evidence to ensure the right decision is made to help you both to have contact again.

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:

  1. 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.
  2. 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
  3. 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.

Everything revolves around my brother and I’m tired of feeling ignored. What can I do to change this?

Tell your parents what you need. Whilst it may feel obvious to you, it may not be obvious to them. It also may be hard for them to acknowledge that they haven’t met some of your needs up until now. Take it a topic at a time and make your suggestions specific.

Consider the difference between:

“You always talk about my brother, but I want you to talk more about what’s going on in my life”

and

“Let’s talk about my brother first for about fifteen minutes and then let’s talk about my children; job-hunting; decorating…”

The second statement clearly explains that you want to discuss a specific topic in your own life and still provides space to discuss your brother.

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.

Am I a sibling carer?

Some adult siblings think of a ‘carer’ as a family member who lives with their brother or sister and helps with:

  • Washing and dressing
  • Making meals and drinks
  • Cleaning and laundry

But the definition of a carer is actually much wider than this. Think about what you do for your brother or sister that you wouldn’t do for an adult without a disability. This might include:

  • Answering the phone to your brother five times a day when he calls for support or because he is lonely
  • Reading through bills with your sister and helping her to understand them
  • Advocating for your brother’s needs at meeting with a social worker
  • Phoning a hospital when your sister is admitted to let them know how she prefers to communicate

You do not need to live with your brother or sister to think of yourself as their carer. Your brother/sister might live:

  • In residential care
  • In supported living
  • With your parent(s) or other family members
  • By themselves, with a housemate or with a partner

Recognising the role that you play in your brother or sisters life can help you to access more support for yourself. Benefits of recognising yourself as a sibling carer:

  • Protection from discrimination under the Equality Act 2010*
  • Right to request flexible working hours and to have time off in emergency situations
  • Recognition of your role within other services. Some GP services allow sibling carers and their disabled brother or sister to visit the surgery at the same time to avoid two trips
  • Having a carers assessment, to look at the support you need to continue your caring role
  • May be entitled to carers allowance, depending on the number of hours you provide care

*England/Wales/Scotland. In Northern Ireland you are protected under the Human Rights Act and Section 75 of the Northern Ireland Act. This requires public bodies to promote equal opportunities for carers.

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.

Read about the experiences of sibling carers who have spoken to their employers about their caring role:

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

Visit www.SeeAbility.org

My sister has has repeated stays in hospital because of her epilepsy and I’m tired of all the healthcare jargon

Health and social care staff sometimes forget that the words they are using are jargon – it’s OK to remind them. Ask them to explain what they mean, and don’t be afraid to ask several times if their descriptions are still not clear.

There’s also The Care and Support Jargon Buster. This is an online plain English guide to the most commonly used health and social care words. You can search for a word or phrase and find out what it means. The definitions are in plain English rather than legal.

My sister struggles to use a computer, but it's really tough trying to help her with it over the phone. I live miles away, so I can't just pop round. What else can we do?

You can use something called ‘remote access’ or ‘remote support’. This allows you to see your sister’s screen from your screen (but does involve you logging in and her allowing this). It can usually be used across smart phones, tablets and computers. Search ‘remote access’ plus the type of device on google to find out more. It may take some experimentation to see what works, but once you both get the hang of setting it up, it could be very helpful when you’re sorting out tech issues remotely.

I'm thinking about getting my brother a tablet - what accessibility features are there on Apple and Android devices?

Tech expert Ray Weaver explains and compares useful accessibility features including quick edits that make screens less confusing, voice tools for blind and partially sighted users, tricks to adjust the touch sensitivity of a screen, live captioning features for hard of hearing and d/Deaf users and much more.

I'd love a new way of keeping in touch with my sister who has learning disabilities

Book Creator is an app that lets you make an interactive book, with colours, text and images. You can add your own videos, sound effects, speech, songs, noises or web links. It’s colourful and uncomplicated to use. You don’t have to create a whole book (but you can if you like!). You can make a couple of quick pages to let your sister know about your week. It’s like an interactive letter. Find out more in this video from tech expert Ray Weaver.

I want to talk to my adult son about his learning disabled sister's future. Where do I start?

Many other parents and siblings will be wondering the same – you’re not alone. How do you prepare for the future and what would  a successful future look like for you all? It can feel overwhelming at times as there can be a lot to think about – health, finances, care, housing and more. As parents and siblings, we want our relatives to have a safe and happy life.

Here’s our advice:

  1. Start small. It’s normal to want to delay planning for the future because there’s just too much to think about. Start small and take it a piece at a time. Be led by your son.
  2. Use a planning guide such as Thinking Ahead: A planning guide for families. It’s free to download and there’s a re-writable version for you, your son and daughter to make notes on together. What would you like for the future? What would your son and daughter like to happen and do they agree?
  3. It will take time. It’s normal for conversations between parents and siblings to take place over a period of time which will vary from family to family – it will take time and won’t all be resolved in one go.
  4. Get more information about wills, trusts and planning for the future at one of Mencap’s online seminars here
  5. Tell your son about Sibs. There are 1.7 million adult siblings of someone with a lifelong disability in the UK – your son is not alone! We have a range of support for adult siblings at different points in their sibling journeys including support groups, guides, an ebook and events.
  6. Remember that you can consider a range of options for your daughter’s future including the type of care, support and housing that she might want and which also might be suitable for her.
  7. There are lots of options for different types of sibling relationships. And there is no right or wrong. Siblings have no legal obligation to provide care for their disabled brother or sister when a parent dies – they don’t become ‘next of kin’ in the eyes of the law. Some siblings may help with care tasks, some prefer not to and there’s a whole spectrum of relationships between. It’s about what works best for both the sibling and their disabled brother or sister.
  8. Remember that you’re not alone. Reach out to other parents (on mencap’s forum, at your local carers centre, on facebook groups) and share your thoughts and questions. What are their experiences of planning for the future? It can help to meet others who understand your perspective as a parent.

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:

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