"A lot of carers face a loss of identity and a loss of self – because it’s all about the person you’re caring for," says Amy*, 29, whose caring role began at 18 when her younger brother developed a serious drug addiction. Amy left the situation four years ago, and now works at Carers Lewisham in south London, a centre dedicated to supporting carers, rather than those they care for. "We show them there’s light at the end of the tunnel," she says.
One in 10 people in the UK are carers, and 58% of those are women. A carer is defined as "anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support." Those classified as young carers (under the age of 18) can have a particularly hard time, with 68% experiencing bullying at school, and four times more young adult carers drop out of college or university than non-carers. Amy had to defer her university place for a year, and her grades understandably suffered because of stress at home. Her colleague *Gemma, 22, also interviewed below, has been a carer for her mum for as long as she can remember, and left mainstream education at the age of eight after suffering horrific bullying. She started attending sessions at Carers Lewisham when she was 10 – "It was the only interaction I had with people," she says.
The centre offers practical and emotional support for carers, from counselling to grief recovery, mindfulness classes, help getting back to work after time off, and specific sessions depending on type of care, i.e. those caring for someone with dementia, those caring for someone with a physical disability, and so on.
Ivona, 45, also interviewed below, runs the Young Carers Service at the centre, taking groups aged eight to 16 on days out bowling and ice skating – "just giving them a chance to be by themselves and to focus on their own needs." Ivona grew up in New York and was a young carer for her mum, who had physical mobility issues and later, bipolar disorder. As she explains, young carers can start to feel depressed when they enter their teenage years, as that’s the time you start becoming more aware of your home life in comparison to your peers. Teenage carers often assume that the only career path available to them is a caring role, "since they’re so used to helping". Ivona is passionate about showing young carers that they have other options and that they don’t have to be defined by their caring role forever: "We want to let them know that they can go and do something completely unexpected with their lives!"
This was the case for Claire, 28, who now runs her own business and works in production in the fashion and beauty space. Claire cared for her mum, a single parent who was diagnosed with a neuromuscular disease when Claire was eight. "I was the eldest child, so I had a range of responsibilities, from caring for my two younger siblings and taking them to school, to cooking, cleaning and generally looking after my mum; helping her bathe, walk around, taking her to the doctors etc." Claire says the experience had a huge impact on the person she is today: "So many of my personality traits and strengths are because of the responsibilities I had as a child. I'm mad organised, very independent (some might say bossy), and that's probably because I was juggling so many things growing up. It's most definitely shaped the person I am today, and for that I'm grateful."
Claire's story is the kind Ivona wants to share with the young carers she works with at the centre. "These different trajectories are what my colleagues and I have been discussing as we all made different choices in our lives as carers. There aren’t enough narratives about the type of decision-making that a carer must go through." Below, we hear from four women who were all once young carers, and who now work at the centre, about what life is like for carers today.
When did you become a carer? My caring role started at 18 for my younger brother who has addiction problems. He turned quite abusive – mostly verbally, but there was one incident when things got physical and he pushed me down. My brother was stealing money from my mum and then stealing more expensive items and selling them on. For the first few years, my mum thought Oh he’s young, he’ll grow out of it, and then it became clear he wouldn’t. I left the situation four years ago when it got too much; I didn’t feel safe, I wasn’t sleeping, and I realised it would never change if I was still there, because I was the buffer between my mum and my brother. If he was trying to force her to give money, I would step in. My mum later told me, after I had left, that she’d contemplated suicide a lot during that time. She used to be such a strong character, she had real intelligence and wit, but she became very insular and everything became about my brother. I have a lot of guilt for leaving but I had to do it, and it gave her the courage to leave as well, eventually. Her breaking point was when he followed her to the train station trying to get money out of her, and publicly humiliated her until she gave it to him. He’d be banging on her bedroom door, it was a horrible situation. She ended up in a lot of debt. There is always the person in the family that ends up picking up the mantle. I lost a sibling, and I also lost the person my mum used to be. My brother resurfaced this Christmas. He had been living in a homeless shelter that helps people with drug addiction get back into work. He did get back into work, but as soon as he had money again, he immediately started buying drugs, which broke the terms of the shelter’s lease, so then he came knocking on our door. I have a lot of resentment and anger at the situation. And a lot of guilt.
How hard is it for the carers you work with today to get financial support? There is definitely not enough funding to cover all those who need support in the borough. This often leads to carers having to leave work, and it can feel like you're almost being forced into the role of caring full time. The local council is equipped to offer more support e.g. pay for professional carers/home augmentations for the most severe cases – or for those who are persistently vocal, but you have to yell and scream to be heard.
How did your experience with your brother change your perspective on life? Life is shitty! But it makes me appreciate the things that are good. I have a very supportive partner. I really enjoy working here, I have great colleagues and friends. My partner’s experience was very different from mine – he had two parents, they owned their own house, things were stable. Some people are just so lucky. I was raised on benefits in a single parent household – and I've had to deal with the stigma attached to that. My partner had a much smoother time, but you can’t hold it against people – life is a lottery!
When did you become a carer? My mum got ill right after I was born. She has Crohn's disease and chronic obstructive pulmonary disease. I started helping out when I was little. When I was eight, I left school because I was very badly bullied. They used to hold me down in the playground and cut my hair off. So I was home schooled. Just before I left, someone from Carers Lewisham came in to recruit new young carers. I registered here when I was eight. I didn’t do anything for the first year because I was terrified of kids my age after my experiences at school. But when I was about 10, I started coming to the centre two afternoons a week. It was the only interaction I had with people. We would go out – even if it was just to McDonald’s. And we’d go to museums. We’d go on day trips and on weekends away too. One of the women that worked here, who was sort of like a mentor, found a college for me when I was 16. I hadn’t done my GCSEs, but she found a preliminary GCSE course and filled in the whole application for me and insisted I sign it. So I went to college and I got my GCSEs, and then I did a secretarial law course. I just recently signed up for an Open University course in work, law and society.
What's your relationship like with your mum now? I still live at home and care for my mum. I make sure she goes to her doctor’s appointments, make sure she actually listens to what they’re telling her and implements the advice. My relationship with my mum is really good. We've always got along. She’s never made me feel guilty. She wants me to go out and live my life.
What's the transition like from young carer to adult carer? The youngest carers (8-10) look at their extra caring responsibilities as a point of pride since they get to do more 'adult' things around the home and outside. Most very young carers have not yet socialised too much in the homes of their peers, so for them, being a young carer with all the added tasks seems 'normal'. Once the young carers reach their teenage years, it appears that their pride often gives way to resentment and anger at being 'stuck' in a home situation that impacts on their time both academically and socially. I was a young carer for my mum. She had a lot of physical mobility issues. I was very helpful around the house, I cooked, I cleaned, I did the ironing. As I got older, my mum started to have more mental difficulties, she developed bipolar disorder, so all of a sudden my role changed to include things like financial management. That’s when I started to realise that other kids got to just hang out after school, whereas I had to go home and take responsibility.
How did being a young carer change your worldview? It made me realise how lucky people who aren’t carers are! The analogy I use is when you’re in a caring role, everybody else gets to be a brick, and you are the mortar, so you have to become flexible and accommodate everybody else’s needs. You become codependent, meaning that your feelings and your reactions and your emotional wellbeing are dependent on what the other person is doing. So if my mum was in a good mood, I was in a good mood; if she wasn’t, then I wasn’t. You get to a point where somebody, like a therapist, says 'Well, what do you need?' and…you have no idea. It was a struggle but I went away to university, which allowed me to forge my own path a little bit. After university, I had career opportunities on the other side of the world, but I couldn’t pursue them, which caused some resentment. When my mum passed away, I moved away. But my sister has had bone cancer for the past 20 years. She got sick when I was 18. Fortunately, now, she has enough income to have help. I go back home [to New York] when I can but my life is here now. The thought of going back to care for another person is too much. I spent most of my life caring. As my therapist reminds me, I was born to have my own life as well!
When did you become a carer? I started caring for my mum in 1979, and I’m still caring for her. She’s got dementia, she’s 91 now. There are five of us in the family, but as is usual, it falls to one person. My siblings said 'Oh you’re doing such a good job, you carry on,' and I said 'Yeah, but can you help me?' Then you find out that you can’t really ask them for anything because they’re not really interested. They all decided to move out of the area [laughs]. What that meant was that I didn’t go anywhere and I didn’t do anything, because if I did, I’d have to make sure someone else was there to keep an eye on her. Eventually, I made the difficult decision to put her in a residential home, which is safer for her. But they wanted to place her in a home in Kent, and that would have been a long journey for me, so I asked the woman who was placing her for the website she was checking for places on, and I went on the website myself every day to try and find a home closer to where I lived so I could visit her regularly. I finally found one close by and I didn’t hesitate when I found it – I said 'That’s it, that’s her room, number 31, that’s where she’s going to be' – and I called straightaway and sorted it out. Now I visit my mum three times a week. She knows who I am. She comes running to me when I go to visit which is very sweet – she’s like a child again. She’s a really good person. I just wish I’d had more support from my siblings. I was frustrated because it really affected my personal life. As far as they were concerned, I was free to care for her because I wasn’t married and I didn’t / don’t have kids – not because I didn’t want to have them, I did, but there you go.
How did you find Lewisham Carers? When she was diagnosed with dementia, there wasn’t much guidance, so I did a course on dementia to find out for myself what was happening to her. I learned a lot from that. There’s no one who tells you, after diagnosis, what to do. I was at my wit’s end and I picked up the phone and called Mind for some reason and just said 'I need help' and burst into tears. The woman listened to me and asked me about my mum and my situation. She said 'Have you heard of Lewisham Carers?' and gave me the number. I wish I’d known about it earlier.
*Some names have been changed