Adult sibling carers

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 parents 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

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. Read our guide Getting a care needs assessment for more advice.

“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

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
• Time off from work in emergency situations or in planned situations (England/Wales/Scotland)
• 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

There isn’t a nationally recognised carer card scheme, but there are other ways to show that you’re a carer – read more from Carers UK here.

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 [email protected]. 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

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

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

“The truth for me is I still don’t really know how I feel about being a sibling carer as I haven’t had much of a life without being one. What I’ve come to realise is that my role as a carer has taught me so much and fundamentally shaped my identity.” – Read Mohamed’s story

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

Carers UK:

• Getting a carer’s assessment
• Financial support
• Your rights at work
• Technology and equipment
• Online forum

Carers Trust:

• Find services near you
• Grants and discounts
• Getting a break
• Young and young adult carers (under 25)
• Resource library
• Advocacy

Carers Week is an annual campaign held in June each year to raise awareness of caring. Visit www.carersweek.org for more information and to find events happening near you.

• Join a support group
• Join our adult sibling Facebook group
• Shared experiences of adult siblings
• Coping with feelings
• Loneliness
• How to find a counsellor
• eBook ‘Self-care for siblings’
• Guides for adult siblings
• Sibling bereavement
• Find help
  

Here’s a selection of stories from adult sibling carers:

• Ruby – “I feel every pain that passes his body”
• Josh – “People often don’t realise I am an identical twin”
• Mohamed – “I’ve really been through a range of emotions, from joy and happiness to isolation and loneliness”
• 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”
• 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”
• 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”

And you can read the full collection of stories from adult sibling carers here.