What is it like to be a young carer?

June 8, 2020

Today marks the start of Carers Week, an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK. According to the last census, there are 166,000 young carers in England, but recent research suggests that the actual figure may be as many as 800,000. In this extract from Lights for the Path by Madeleine Davies we hear of the real-life experiences of young carers.

Long Years

My mum was ill for two years before she died. Many young people spend much longer living with a relative with an incurable disease. Death is inevitable, and yet distant. There may be many occasions when it seems close, before retreating again.

Hundreds of thousands of people in the UK are ‘young carers’, which means that they are providing care for someone who is physically or mentally ill, disabled, or misusing drugs or alcohol. Many aren’t receiving any support at all – partly because the truth about their lives is invisible to those outside the home.

In On Eagles’ Wings, a novel by Sue Mayfield, Tony cannot remember a time when his mum, who has multiple sclerosis, wasn’t ill. By the time he’s a teenager, he’s an expert in helping to care for her, and his feelings oscillate between envy and guilt. He’s never had ‘the sort of mum who held you tight and made you feel better, who rushed to your bedside to grip your hand and stroke your hair . . . He resented the hours he’d spent looking after her, hated the clinging smell of illness, the tear-stained eyes accusing him.’ When his mum goes into hospital, he only learns that she is likely to die when he overhears his father on the phone, describing it as a ‘great blessing’ – language that makes Tony furious. Does his dad actually want her to die?

Losing a person after a long illness can create confusing feelings. You might have already started mourning for them years earlier, only for them to get better again. Which emergency will prove to be the final one? When the end finally comes, you might feel relief, especially if the person was in pain, and that might, in turn, leave you feeling guilty.

In an episode of the Griefcast podcast, the comedian Charlie Russell tells the story of her mother, who died on Charlie’s 18th birthday after many years of struggling with bipolar disorder and alcohol abuse. Charlie talks about her memories of trying to look after her mother, even as a young child, and living a ‘double life’ at home and at school. On the day that her mother died in hospital, she went to her school leavers’ ball, where she had an ‘amazing time’, spending a brief period in a parallel universe in which her mother had never been ill. ‘If someone gave me a button that said, “If you press this button your mum hasn’t died and it’s all different,” I don’t think I would press it because I was exhausted,’ she explained. ‘I didn’t want my mum to die . . . and I miss her so much, but I also couldn’t continue like that anymore. It had been all my life: 18 years of hiding and dealing with my mum not really being a mum. If I could have my mum back, well, I would, but if she were to come back and it were to be like that again, I actually can’t do that again.’ Charlie felt like a ‘fraud’ because of these complex feelings of relief, guilt and sad- ness, and worried, then, that she wasn’t ‘allowed’ to be in the ‘club’ of people grieving. If you, too, have experienced relief, it’s important to know that that’s normal and no reflection on your love for the person.

Bringing together stories of loss, advice from doctors, counsellors, authors and others as well as Madeleine’s own experience, this book offers practical tips and incredible comfort, telling readers everywhere: you are not alone, and you will find your way.

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