Disability in the family

Whether your mum, dad, sister or brother, has a disability or illness, family life can be challenging. So how do you fulfil your role as a young carer but still have a life of your own? And what support can you get?

Sometimes it's hard to be honest about having a disabled sibling.

A family of carers

If you help look after someone else who’s frail, vulnerable, ill or disabled, then you are a carer. Research conducted in 2008 for the Young Carers Trust revealed that one in every 20 young adults aged 18-24 (nearly 225,000 people) and over 61,500 16-17 year-olds are carers.

Being a carer can bring about mixed emotions. Some people feel family life is strengthened by disability. Mohammed, 20, helps look after his father, who has a lung condition. “I think dad’s illness has made us closer than most fathers and sons. He can’t get out much so he takes a real interest in me and we are good friends.”

However, others can feel trapped by their situation. Kira, 22, fears she will never be able to leave home. “I was 19 when my brother had a brain injury, and I help mum care for him and my little sister. I love my brother but sometimes he’s violent, which scares me, and I worry that mum wouldn’t cope alone.”

If you’re the parent or main carer of a child with a disability

Don’t struggle alone: “I’m only 24, but I feel 100 sometimes,” says Jo, whose three-year-old daughter has epilepsy and cerebral palsy. “I hardly recognise the carefree person I used to be. But I can’t let myself get upset because who’s going to be there for my daughter if I lose the plot?”

It’s essential to get support before you reach breaking point. Being a carer can be exhausting and isolating, but you’re not alone. There are many others in a similar situation and often talking to someone about your feelings or emotions can help.

“You may be coping on the outside, but inside you might be distressed, exhausted and overwhelmed,” says Elaine Bennett, of Contact a Family. “Parents tell us that the best support they get comes from other families who have been in the same situation, so we help them get in touch.” Parents can also find emotional support on mumsnet, which has a busy special needs forum.

Apply for a short break: Spending quality time away from each other can be good for both of you. Some areas run play schemes, befriending services, overnight foster care and after-school clubs for children with disabilities. These are now called ‘short breaks’ – ask your local authority for details, as entitlement varies from place to place. You may need to be in receipt of Disability Living Allowance (DLA) to claim.

Get assessed: Are you getting all the help you need? If your child is disabled you have a right to have a needs assessment carried out by your local social services department. This can sometimes lead to more services being made available for your family.

If you’re the sibling of someone who is disabled

You’re not alone: “It can be hard for siblings of disabled people to speak honestly about their lives,” says Monica McCaffrey, Director of Sibs, which helps people who have disabled brothers or sisters. “People worry that their sibling might put off potential friends: sometimes they avoid socialising rather than mention it. So it can be very beneficial to meet others in the same situation.”

Talk about the future: Your parents may do most of the caring now, but what happens when they get older? “It’s a good idea for siblings to be involved early in discussions about the future,” advises Monica. “Sometimes parents find it hard to let go and let their other children get involved. There might also be conflict about what a sibling thinks their disabled brother or sister is capable of doing, or even what they should be wearing.”

Building a good relationship with a sibling: It’s natural for siblings to disagree and argue, regardless of disability or illness. Forming opinions is all part of growing up – but so is learning to express them appropriately. “If jealousy or resentment gets in the way of creating good relationships with your sibling it’s worth persevering to see if you can compromise and find a way to create a more harmonious family life,” says Monica.

If you care for a parent or other relative

Look after your body: If you’re aged 18-25 and look after someone for 50 hours or more every week, you’re three times as likely as non-carers to say that your health is ‘not good’. If you do a lot of lifting, or hauling around heavy equipment, it’s good to learn how to do it safely.

Look after your mind: If you’re feeling depressed or anxious, talking about it might help. Support – either at the end of the phone or online – is also available through organisations such as Mind and SANE.

Claim your benefits: Six out of 10 carers worry about money. Carers UK has information about Carers Allowance and any other payments you (and the person you look after) might be able to claim. You can also find out more about benefits for carers on Gov.uk.