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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 siblings’ life. For other siblings, it is a role that they have in childhood and throughout their whole life.

Unlike their peers, many siblings grow up with a sense that they will become a carer at some point in their life and the responsibility of this can feel immense.

Sibling carers whose disabled brother or sister has died may mourn not only the person, but the loss of the caring role as well.

“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 whether you become involved in their care or not. Your relationship is yours alone and no one can tell you what is right for you both.

Remember that many people with lifelong disabilities have no siblings or other family members, and all of their care and support may be organised and provided by the local authority.

Visit Disability Rights UK for more information on getting a care needs assessment.

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 a 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/spouse

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 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.

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.

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 let’s 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 or disabled parent(s) or parent(s)-in-law
  • Caring for their own children or step-children

“Caring for my brother is very isolating and the responsibility huge. After the support group, I had more energy and an idea of what to try next” – Adult sibling

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

“Other relatives “help” but I have to drive everything.” – Adult sibling

Top tips for sibling carers

  1. 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.
  2. 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.
  3. 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…’
  4. Meet others 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, find facebook groups that you can dip in and out of or use the Carers UK online forum.
  5. 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.
  6. Set boundaries around care time if you can. When you are a carer for your brother or sister, it can feel like care tasks seep into every area of your life. Put boundaries around the time and the energy that you spend on care time. For example, allocate yourself a set amount of hours per week towards care tasks or set a target of no care tasks after 7pm.
  7. 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. Talk to your GP about any stress you are experiencing as a carer.
  8. Get a carers’ 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.
  9. 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.
  10. 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.
  11. 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

Carers UK:

Carers Trust:

Carers Week (6th-12th June 2022) is an annual campaign to raise awareness of caring. Visit www.carersweek.org for more information and to find events happening near you.

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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.

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