Life as a young carer
Ray Thomas chuckles as he recalls the sight of bread appearing to butter itself on the kitchen counter back when his daughter was at preschool. “Sarah couldn’t reach the counter to make sandwiches, so all you’d see is the bread and knife looking as though they were doing it themselves,” he says.
Sarah has been a carer for her mother, Carole, who has multiple sclerosis, since she was small. Then, when she became an adolescent and her father was diagnosed with degenerative bone disease and fibromyalgia, she had to become his carer too. “I’ve never known anything else,” says Sarah, who is now 18 and who continues to do everything from general household chores to helping with medication, providing physical assistance, filling in forms and many other day-to-day jobs.
“One of my earliest memories was being amazed to see my friend’s mum walking. I thought all mums were disabled and all dads worked long hours,” she says, as I talk to her and her parents at their terraced home in Shrewsbury. “But I can’t say I was disappointed when I found out that my mum was different,” she adds, thoughtfully. “It has meant she’s always been around and although it’s hard to say what I’d have been like if I hadn’t cared for her from a young age, I do know I’m very independent – far more so than most of my friends.”
It’s true that Sarah’s confidence, assertiveness, empathy and buoyancy all combine to make her seem much older than her teenage years, while her relationship with both parents reveals a rare mixture of easiness and frankness.
There are lots of assumptions made about young carers, says Sarah, not least that they miss out on holidays. “In fact, we usually got away three times a year. Then there’s the assumption that my education suffered. But I did well in my GCSEs and am enjoying studying health and social care at college. If anything, I hand in work early. Mum’s illness is so unpredictable that I’ve always felt I need to be ahead of the game.”
Neither Carole, 56, nor Ray, 59, feel guilty about the role Sarah has had to play. “People often ask me that,” says Carole. “But I think the illness has given us advantages as a family. Not only have she and I had much more time together than most families, but I think the illness has made me a better person for keeping life in perspective. Hopefully I’ve passed that on to her.”
Carole was only 20 when her first symptoms of MS began – notably, blurred vision and pins and needles in her legs. “It wasn’t long after we’d got married and there were days I thought I was losing my mind. One day when we came home to find the cat dead, I even got them to do an autopsy because I wondered if I’d caught something from her. So I was relieved, two-and-a-half years later, to get a diagnosis. Finally, I had a name to put to it and could get some treatment, although there wasn’t much around at that time.”
Although he didn’t explain why, a specialist told Ray and Carole he wouldn’t recommend having children, so they put any hopes of expanding their family aside until another specialist said he could see no reason not to. It was eight years before Sarah finally arrived. “Carole was the healthiest I’ve ever known her during her pregnancy and the happiest I’ve ever known her when Sarah was born because she was such a distraction from the pain,” says Ray, although it’s Sarah who appears more well-versed in the details of that period than any of them.
“I didn’t cry and they only had to wake me to feed me. If I fell asleep on the floor, Mum would just put a blanket on me as lifting was hard for her,” she says, as her parents nod in agreement. “As I entered toddlerhood, I didn’t see the point of tantrums or crying, so I continued to be no trouble. If Mum needed to rest, Dad simply took me out. Friends and relatives helped out a lot too. In fact, I loved it when Mum went into hospital because I got to have a sleepover at my friend’s house,” she says.
Sarah’s earliest duties were things such as unfolding Carole’s walking stick, lending her a shoulder to lean on to get out of a chair and basic housework. Later, she started to give her mother injections, do more housework, plan meals and check tablets, as well as help her in the shower and bathroom.
“By the time I had got to year 9, my school teacher said, ‘If you think about it, you and your mum’s roles are reversed’ and I thought, yes, I’ve never thought of it like that before, but it’s true.
“It wasn’t just the practical things – I had become an emotional support to her too. As my dad’s pain has become more constant and agonising, that’s happened with him too. It’s not something I feel remotely bitter about, but it must at least partly account for why I’m not your typical teenager and I never do stuff like drink and party hard. I’m a lone ranger and a very sensible one at that.”
Not that any of them see their situation through rose-coloured spectacles. “There are weekends when I literally cannot move and Sarah has to move my legs for me, while Ray’s pain can be unbearable, so of course it gets us down sometimes,” admits Carole.
“We can irritate each other,” says Sarah. “We don’t shout or argue, but because we’re together in this house most of the time, sometimes I don’t know how we don’t wind up killing each other.”
“I think you forget how young I am sometimes too,” she adds, addressing her parents. “I asked Mum what a word meant the other day, and she was really taken aback.”
The worst aspect of Sarah’s life has been bullying by her peers. “I’ve never yet met a young carer who hasn’t been bullied. I think it’s because we stand out – we have often had to grow up quicker than our peers, and kids don’t always like that. In my case, there was a group who targeted me physically and verbally at school.
“Sometimes even adults were unkind. I have to go to our corner shop a lot and the woman there used to eye me like a hawk and was always rude to me, as if she was expecting me to steal. I suppose it’s because I was in there so much at such a young age. Then one day I went in with my mum and the reality of my situation must have hit her because she changed her tune completely, and has been nice ever since. But even when I was asked to carry the Olympic torch this year, there were people who told me I didn’t deserve to. These days, I can rise above it, but it used to really hurt.”
Sarah’s anxiety has not been easy either. “I’ve always been a nervous person, but after my uncle died in 2006, I started to get panic attacks. He was the fun one in the family – the relative who would let me be a child, taking me to places like the cinema. But even if he hadn’t died, I suspect I’d have some kind of issue. I’ve never met any young carer who doesn’t, whether it’s extreme shyness, aggression, depression or anxiety. It has to come out somehow.”
Sarah first started meeting other young carers when she helped to set up a local group for them, when she was eight. “It became my lifeline. It was somewhere where others really got what it’s like to be a carer, and it was a safe place where we could be brutally honest about our lives around each other. Best of all, it was where we got to be children. Play was a major part of those get-togethers.”
The group also became the catalyst for Sarah’s passionate campaigning for young carers and she continues to call for better support and recognition. There are an estimated 700,000 young carers in Britain, with an average age of 12, which is how old Sarah was when she posted a video on YouTube showing what life can be like. “Local councils and the government just don’t realise how much emotionally and physically young carers go through, and I wanted to show them,” she explains.
In 2009, Sarah won the Multiple Sclerosis Society’s Carer of the Year award and the International Caregiver award from the Multiple Sclerosis International Federation in 2010. Last year, she was invited to carry an Olympic torch in recognition of her work on behalf of young carers.
Her latest bugbear has been university. She started to wonder how she would ever manage to go. So strong were her views that in 2010, she was invited to air her concerns, along with four other young carers, at a meeting with David Cameron at Downing Street. “It’s not just me – it’s thousands of young carers in the same, and a lot worse, position who just don’t have any prospects because of it,” she says.
Ray accompanied Sarah on the trip. “David Cameron said to me, ‘So how are we going to get your daughter to university?’ I answered, ‘You’re the one running the country, you tell me.’ But he didn’t.”
In the end, Sarah enrolled for a course through the Open University. “It means I can stay at home and get the degree I’ll need to hopefully go on and work in health journalism or policy-making. It suits me, if I’m honest. I get panic attacks in exam situations and I just wouldn’t enjoy sharing a house with a bunch of partying students who don’t clean the bathroom or wash up. I just know I’d get teased.”
So what does the future hold otherwise for Sarah? Actually, she is engaged to be married. “We have no imminent plans to marry but there will come a time, perhaps when I am at university, that I’ll want to move in with him – I do think I’m increasingly ready for that. Mum and Dad have always encouraged me to grow up to have my own adult life, and while I used to worry what would happen to them, I think they would manage now. They have lots of friends and relatives, and I would never be far away.”
• Up to 700,000 children in Britain look after/support to some extent parents or siblings with disabilities, mental-health problems or who misuse alcohol or substances.
• Many provide more than 20 hours of care a week, with some doing more than 50 hours a week.
• Research shows that 27% of young carers, aged 11-15, miss school or experience educational difficulties and 68% are bullied by their peers and feel isolated at school.
Support for young carers
Many parts of the country offer a Young Carers Project. These offer fun (evening clubs, days out and holidays) and a listening ear when necessary. These are also a great source of information and advice for the whole family, as well as support to help young carers make the best choices for themselves. Most are listed on the internet, or find out more by emailing email@example.com.
• Young carers can gain help and support from a wide range of professionals, including doctors and school nurses, teachers and other school staff, social workers and youth workers.
• Carers Trust is a website and online support service, through which young carers can find others in similar situations to chat to in a supportive environment. There’s an online support team that offers email and chat sessions, and additional advice on the Agony Aunt pages. The team also runs a programme of web chats with special guests once a month. Find out more at youngcarers.net.
• The MS Society provides a guide for young carers on the resources page of its website, mssociety.org.uk. The charity also has a Young Carers Fund, which gives young people caring for someone with MS the chance to fulfil personal goals or wishes.
• Helplines, notably ChildLine, are a good source of confidential advice because you can choose not to give your name.