Adult sibling carers
Many siblings have grown up alongside their brother or sister and may never have known a life that doesn’t centre around their brother or sister’s needs, routines and abilities. They may be born into a world of providing care.
Being a sibling carer is different to other caring roles
For most adults, becoming a carer is a role that has a clear start point, whether this is sudden or gradual. For example, a parent might become a carer when their child is born with a disability or a husband might become a carer for his wife when she acquires dementia. Some carers may have felt more freedom and less responsibility before the caring role became a part of their life. A sibling may have far less experience of this, if any at all.
“A sibling relationship is one of the most unique familial relationships out there. It usually outlives any other kind of familial relationship, meaning the impact it can have in shaping an individual’s life can be huge. When you add disability to this, the relationship becomes even more formative, for both parties.” – Read Holly’s story
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 physical tasks (like getting washed and dressed) or practical tasks (like cooking or cleaning). 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 another person of the same age, 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 a meeting with a social worker
- Phoning a hospital when your sister is admitted to let them know how she prefers to communicate
- Helping your brother to feel calmer when he is extremely distressed or agitated
You do not need to live with your brother or sister to think of yourself as their carer. They might live in a residential care, supported living, with your parents or other family members or with a housemate/spouse/partner.
“As a member of the Asian community, I know there is a lack of understanding and representation of disability and caring. There seems to be an ingrained need to ‘be strong’, ‘hide’ disability and to ‘just get on with it’. It’s also normal for girls to help out more around the house, so to others, I was seen as no different.” – Read Monica’s story
“I’ve got to think of a distraction and quickly… ‘From the day we arrive on the planet And, blinking, step into the sun…’ I’ve pulled my phone out of my bag and I’m playing full volume The Lion King soundtrack. People are staring but it doesn’t matter. Slowly your eyes move away from the screaming child, and you reach out to take my phone. You change the track until you find the one you are looking for – Michael Buble, Cold December Night playing volume 100 in July in the middle of a farm.” – Read Louise’s story
Being a sibling carer is often a changing role
Siblings may become carers for their disabled brother or sister in childhood or in adulthood, and the role might fluctuate over the years depending on what other support is available and the other demands and commitments in a sibling’s life. For other siblings, it is a role that they have in childhood and throughout their whole life. In single-parent families, siblings often tell us they felt a heightened sense of responsibility when they were growing up to support their lone parent with caring tasks.
Unlike their peers, many siblings grow up with a sense that they may become a carer at some point in their life and the responsibility of this can feel immense. It’s very common for siblings to feel completely daunted by this. Many siblings find they start taking on more care tasks for their disabled brother or sister as their parent(s) start to age. This transition might be sudden (e.g. when a parent is admitted to hospital) or gradual over several years. Some parents find future care very difficult to talk about and this can be challenging for siblings who want to take on more care. Read our guide Talking to your parents about common sibling issues for more advice.
Being a sibling carer can be a large part of a sibling’s identity and this continues beyond the life of the person being cared for. Sibling carers whose disabled brother or sister has died may mourn not only the person, but the loss of the caring role as well. Sibling carers who have two or more disabled brothers or sisters that they care for, may find the loss of one of their brothers/sisters exceptionally challenging as they continue to care for the other(s) at the same time.
“Sometimes we have had to accept we have done all we can and tried our best. It is exhausting.” – Adult sibling
Do I have to be a carer for my disabled brother/sister(s)?
No. You have no legal responsibility to care for your brother or sister. It’s your choice (and theirs) whether you become involved in their care or not – and to what extent. Some siblings are involved a lot, some not at all, and everything in between! Your relationship is yours alone and no one can tell you what is right for you both.
This includes if you have previously agreed to care of your brother/sister. Life changes, all relationships change and people’s needs change too.
Remember that many people with lifelong disabilities have no siblings or other family members. All of their care and support may be organised and provided by the local authority. If your brother/sister needs more care, contact the local authority and request a care needs assessment. Visit Disability Rights UK for more information on getting a care needs assessment.
“I know that I don’t HAVE to do things for my brother. Although it goes against the grain, I’ve started telling people that no, I won’t see if he’ll let me sort out his finances because he’s somehow not able to manage this himself now; no, I can’t persuade him to apply for housing benefit even though he’s a few months in rent arrears because he wouldn’t let staff at the scheme help with this; no, I’m not even going to try to persuade him to accept help with sorting out the dirt and clutter in his flat that’s already led to them raising a safeguarding alert, due to the risk to himself.” – Read Kate’s story
What difference does it make if I see myself as a carer?
Recognising the role that you play in your brother or sister’s 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 carer’s assessment, to look at the support you need to continue your caring role
- May be entitled to carer’s allowance, depending on the number of hours you provide care (and providing no one else in the family is already claiming this, such as a parent. Only one person can claim at a time)
- If you don’t qualify for carer’s allowance but still provide care, you may be able to claim carer’s credit
- May be able to access carers advocacy. An advocate is someone independent, who supports you and helps to amplify your voice in a challenging situation, for example, if you were making a complaint against health/social care
You may also be able to access certain discounts for carers or other support from your local carers centre.
*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.
“Being validated as a carer is everything. It’s essential to understanding yourself. So many of us don’t recognise we’re carers and that’s problematic. Carers can come in many different forms and you can even be a carer from a distance.” – Read Monica’s story
The importance of your own health
Just as in a flight emergency, you must put your own oxygen mask on first. You need sleep, exercise, warmth, nutritious food, rest, play, relaxation and social time. You deserve and need these in your own right, as you are a human and these are our basic needs. However, you also need these if you want to keep going for your brother or sister. You can’t care for someone if you’re burnt out and ill yourself. Looking after yourself is the best thing you can do for your brother or sister.
Prioritising your own health
It can be especially challenging for siblings to meet their own health needs because:
- They are often used to coming second (or third or fourth…) to the needs of another and aren’t used to prioritising their health, or in some cases, even noticing how their own health is changing
- They may be comparing their own health problems to their disabled brother or sister’s that may seem more severe
- They have competing demands on their time
However, looking after your own physical, mental, emotional and social health is a vital act. Self-care isn’t a luxury – it’s a necessity:
- If you struggle to notice your own needs, make a point of checking in with yourself regularly. Whether it’s a 5 minute diary entry at the end of the day or a pact with a carer friend once a week that you’ll both ask each other this honestly, this can help bring your own needs into your awareness
- If you find yourself comparing your health needs to your brother or sister’s, remember that whilst their needs might be more severe, that doesn’t make them more important. You are both humans who deserve to be safe and healthy. No one takes priority
- If you need more breaks as a carer, get a carer’s assessment to look at the support you need to continue in your role. Some siblings feel guilty taking breaks from caring. Ask yourself: Would I work in a job without annual leave? Would my brother/sister want me to take a break and look after myself? Will it be good for our relationship for me to have some space?
- Make sure you seek support during a crisis. When your brother or sister is admitted to hospital, the care tasks can increase and the stress can take it’s toll. Watch out for carer burnout, insomnia, stress, anxiety and depression. Seek extra support during these times and speak to your GP immediately if you are experiencing any of these
- Need to speak to someone urgently? 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
“Growing up with a disabled sister meant that my parents worried a lot about her health, and while I’m sure they didn’t mean for this to happen, I started to feel bad about my own health – like survivor guilt, almost. I think my eating disorder was directly influenced by the environment I was in and the messages I received. It was part self-punishment but also a way of proving that I had needs, and I wasn’t always “okay” like other people seemed to think” – Adult sibling
Being a distance carer
Some siblings consider themselves ‘distance carers’, if they are providing emotional and practical support and live about 30 minutes (or more) from their brother or sister.
Siblings tell us that being a distance carer can be challenging at times, because:
- Their brother/sister might struggle to communicate on the phone/video calls/email so it’s hard to get a true picture of how they are
- They might rely on others (e.g. staff/other carers/parents) for updates, which means the information is being passed on second hand or in some cases, isn’t passed on
- There isn’t the flexibility to just ‘pop in’ and check how they are or to visit quickly in an emergency situation
- Attending appointments and meetings can be very time consuming and involve a lot of planning
Some siblings tell us that it’s also helpful caring from a distance, because it gives them space away from the carer role and lets them have more time to themselves.
“As an adult sibling carer to my disabled brother and sister, their health is a constant worry to me. I worry that paid carers won’t fully understand how important it is to maintain their routine and eating habits – which have helped fend off seizures.” – Read Prakash’s story
Supporting your parent(s) and other family members
You might also find that you are providing emotional and practical support to your parent(s), in their role as a carer to your disabled brother or sister:
- Listening to them while they share their worries about your sister going to a new day centre
- Looking up information about relevant laws online so that they receive all the support they are entitled to
- Employing and paying for practical outside support, such as a cleaner
- Only telling them about the ‘good things’ going on in your life and not sharing your own worries/stresses because you feel that they have enough worries and stresses caring for your brother or sister
- Not asking for your own support that you might have done otherwise, for example asking your parents to babysit their grandchildren
Some sibling carers may also be:
- Caring for ageing parent(s) or parent(s)-in-law (visit Age UK for more support)
- Caring for a parent with a mental illness or physical disability
- Caring for their own children or step-children
“I’m the only family member for my brother aged 52 with Asperger’s and my mother, aged 88, who has dementia.” – Read Kate’s story
Sibling carers whose parent(s) have died
It’s usually a sibling who has the longest standing relationship with their disabled brother or sister. When a care home closes, health professionals switch jobs and parents pass away, it is often a sibling who is still present in that person’s life providing consistency in their care over a lifetime.
Sibling carers whose parent(s) have died may:
- Feel additional pressure to provide care, support and advocacy for their brother or sister, as they may be their only relative
- Feel lonely in their carer role, as there may be no other family members who know and understand their brother/sister like they do and who share family memories
- Feel worried about whether they will die before their brother/sister, and how their brother/sister will cope with this and who will look out for them
- Be managing their own aging process and health needs, which may have increased
- Be coping with changes in their brother/sister’s health relating to the ageing process or complications in medical conditions that are degenerative
“Caring for my brother is very isolating and the responsibility huge. Other relatives “help” but I have to drive everything. After the support group, I had more energy and an idea of what to try next” – Adult sibling
Top tips for sibling carers
- Make time for yourself. Put things you enjoy on your calendar. Protect these times like you would a dentist appointment. Even if it is just 20 minutes reading a book – these breaks matter and the benefits add up over time. Don’t cancel on yourself, and if your time gets cancelled because of a caring emergency, re-book it like you would any other appointment. Setting boundaries around care tasks can also give you a helpful mental break, e.g. no emails to the social worker after 8pm.
- Check that you’re receiving all the benefits you are entitled to. Millions of people miss out every year, so it’s worth taking ten minutes to use the Turn2Us benefits calculator. You can also search for grants.
- Keep relationships going and have time free of care-talk with friends and family members, including your disabled brother or sister. This will help to give you a mental break from caring and will help to maintain your usual relationships. Be explicit and ask for support with this if you need to, for example, ‘Let’s talk about the hospital appointment for 15 minutes, then let’s talk about…’
- Meet other sibling carers. Join one of our sibling support groups, go to your local carers’ centre or contact a charity specific to your brother or sister’s disability. Don’t be isolated. The emotional support can really build your resilience and help to sustain you. If getting to an online or face-to-face support group is too difficult, join online communities that you can dip in and out of, like our sibling Facebook group #Siblife or the Carers UK online forum.
- Get more information. Health and social care topics can be complex and lengthy – search for a ‘plain English guide’ or an ‘easy read guide’ to find something more straightforward. Call advice lines (such as Disability Rights UK) if you have specific questions. Don’t be afraid to ask, ask, and ask again. You won’t be the first person to have asked the question and you won’t be the last.
- Tell your GP that you are a carer and ask them to record this on your file. Some GP surgeries will offer specific support groups or information events for carers. Others will let you and your disabled brother or sister book appointments together so that you don’t have to make two separate trips to the surgery. Some carers have priority access to vaccinations that would protect the person they’re caring for e.g. flu vaccinations and Covid-19 boosters. Talk to your GP immediately about any stress, insomnia, anxiety, depression or carer burnout you are experiencing. Don’t ignore physical health problems that creep up on you too, such as an aching back or recurrent migraines.
- Get a carer’s assessment. This is an assessment of your needs (not your disabled brother or sister’s needs) from the local authority. They should look at what you need as a carer and what they can do to support you. Remember to provide specific examples of every aspect of care you provide and what you need support with. The support provided to you could include things like respite care for your brother or sister, so that you can have a break from caring.
- Get practical support. Ask friends and family for help with specific tasks. For example, you could alternate the school run with a friend, freeing up your time to make an appointment for your brother or sister. Some people use support brokerage services to outsource certain care tasks if they’re not entitled to more support from the local authority. A support broker has experience of the health and social care system and can carry out tasks on your behalf, such as making phone calls or writing letters.
- Build a circle of support. This is a group of people who meet regularly to help your brother or sister achieve their goals. Members of the circle could include family, friends and people in the local community. People in the circle have a genuine interest in your brother or sister’s wellbeing and are not paid to be there.
- Use technology wherever possible. Keep a notes app and a calendar on your phone to help organise appointments and phone calls. Look into assistive technology that may help your brother or sister, such as electronic reminders to take medication. Jointly is an app from Carers UK that can help a group of people to keep in touch, share information (such as a list of allergies) and delegate tasks to manage a person’s care.
More support for carers
- Getting a carer’s assessment
- Financial support
- Your rights at work
- Technology and equipment
- Online forum
- Find services near you
- Grants and discounts
- Getting a break
- Young and young adult carers (under 25)
- Resource library
Carers Week (5th – 11th June 2023) is an annual campaign to raise awareness of caring. Visit www.carersweek.org for more information and to find events happening near you.
More from Sibs
Stories from sibling carers
- Monica – ““Finding out I was a carer was my light bulb moment”
- Kausar – “Was I moulded into this role? It just comes from within myself” (video)
- Kate – “My Asperger’s family”
- Zeinab –“On many days, I am utterly fed-up or angry or sad or scared. And it’s really ok if you are too.”
- Holly – “How my sibling relationship changed as I moved away to university”
- Peter – “We siblings are versatile, courageous and brave”
- Louise – “A day out without words”
- Manni – “Becoming my brother”
- Sally – “My disabled brother lives in an annexe attached to my house. We have the loveliest relationship now”
- Amy – “I was a young carer for my disabled sister”
- Abby – “My employer was supportive when I told them I was a carer”
- Diane – “I’m really passionate about my brother’s care and getting the right thing”
- Carl – “Just because we appear to ‘manage’ does not mean we are ‘managing’”
- Catherine – “Becoming my brother’s appointee was a time-consuming but worthwhile process”
- Coronavirus: Sarah-Jane – “It was stressful supporting my sister through a major operation”
- Matt – “Ten minutes before a work meeting, I could find myself changing my adult brother’s nappy”
- Max – “Having two disabled brothers meant I grew up very quickly” (podcast)
- Dance ‘Joy’: Conversations with Carers produced by Rashmi Becker, Step Change Studios (video)
- Rashmi – “Having the permission to talk honestly is critical for carers”
Sibs would like to thank all the adult siblings on our reader panel who generously shared their time and experiences to help develop this page. Interested in joining our reader panel? Click here to find out more.