Participant Group: Young and adult carers

Young carers Action Day 2022: Meet Isla

During February 2022, our professional artist Beth Coleman led dance workshops with young carers in Scotland as part of our Young Carers Action Day (YCAD) programme, which culminated in an online showcase on 16 March.

This year’s theme for YCAD is “taking action on isolation”. In a survey of young and young adult carers by Carers Trust, 33% of respondents said their caring role resulted in them either ‘always’ or ‘usually’ feeling lonely.

The Create workshops, part of our award-winning inspired:arts programme, were specifically designed to tackle these feelings of isolation by giving young carers the chance to develop their creative and social skills, build their confidence, meet other young carers, and express themselves.

Young carer Isla (13), who cares for her older sister, shared her experience.

Meet Isla

“I really enjoyed being able to choreograph my own dance and teach it to someone, and coming together as one big group to learn everyone’s moves.”

Isla (13), Young carer

“I mostly care for my older sister who is disabled, but I also care for my grandparents and my aunt who is currently on crutches due to a broken leg. I’ve been a carer my whole life. I always grew up with my grandparents and my older sister so I’ve always just done it.

“My sister only has one vocal cord so her voice is unusual and her words tend to get mixed up. She has trouble speaking and expressing her emotions a lot. She struggles to communicate that something is wrong, or that she doesn’t feel comfortable. She also has trouble breathing, she has either a lung or a heart disease, I can’t remember. She has this tube to help her breathe. We can usually tell if she’s having trouble breathing because her eyes will actually turn a different colour, from green to blue.

Above: watch the young carers perform their dance routine for Young Carers Action Day 2022

“The workshops taught me everyone is unique”

“In today’s workshop we had to choreograph something by ourselves and then put it in one big dance so it all lines up. We all worked separately or in small groups, and once we were done with our dance, we all came together and combined it as one big dance.

“You had to piece things together to make sure they fit. It was really fun but it was also a bit awkward because some people could do things that others couldn’t, so you would have to try and do the move or switch it a bit. The workshops taught me that everyone is unique, everyone has their own styles and type of ways their body moves.

“I really enjoyed being able to choreograph my own dance and teach it to someone, and coming together as one big group to learn everyone’s moves. It felt really good when we completed the dance and did our first rehearsal, it felt like we were all in sync and we enjoyed it.

Coming back to earth

“If you’re younger, you might have more time for creativity but now I’m older I get less time to be creative. High school can get stressful so you don’t really have time to chill out and be a bit loose.

“My lifestyle is very different to those who don’t have caring responsibilities. Sometimes at home it can get really stressful, for example if something happens before school, I could then go into school and that could affect my learning. But it doesn’t happen all the time.

“Projects like these help young carers because if they’re having a really stressful day they can find their way back to earth again and get back into that circle of where they first were.”

This project was delivered in partnership with Carers Trust.

Young Carers Action Day 2022: Meet Esme

During February 2022, our professional artist Adele Watts led photography workshops with young carers in Surrey as part of our Young Carers Action Day (YCAD) programme, which culminated in an online showcase on 16 March.

This year’s theme for YCAD is “taking action on isolation”. In a survey of young and young adult carers by Carers Trust, at least a third of respondents said their caring role resulted in them either ‘always’ or ‘usually’ feeling ‘worried’ (36%), ‘lonely’ (33%) or ‘stressed’ (42%).

The Create workshops, part of our award-winning inspired:arts programme, were specifically designed to tackle these feelings of isolation by giving young carers the chance to develop their creative and social skills, build their confidence, meet other young carers, and express themselves.

Young carer Esme talked to us about her experiences.

Meet Esme

“These projects help me not to focus on stuff that’s happening at home. It makes me feel free from all the responsibility. It also helps me escape reality.”

Esme, Young Carer

“I care for my mum because she has mental health issues. When I was younger she used to have really bad mental health. She shouted, screamed, cried a lot and used to throw stuff. Not glass but plastic stuff or pillows, she used to throw them across the room and get really emotional really fast. But now she’s gotten a lot better, she doesn’t cry as much. She still does get angry and shouts quite a lot.

“I think I was a toddler when she started having these problems, because I remember being downstairs in our old house and I could hear my mum and dad fighting. I was confused about what was going on. We used to go up to my nan’s a lot when my parents would fight. They’d make lunch for us until things quietened down, and then we could go home.

“Being creative with other people is great because they help you see different things”

“At the Create project today, the subject was wellbeing, and we were taking photos of things that made us feel calm and nice. We had a look outside and took some pictures of herons and birds and plants and loads of trees, wildlife and ducks. Some people took pictures of dogs. Some people did illusions where it looked like you were holding something and it looked bigger.

“I’ve enjoyed making new friends, having fun and taking pictures. The project made me feel happy. At first I was nervous because I didn’t know everyone, and then I started getting the hang of it and it was really fun. Being creative with other people is great because they can help you see different things. If you don’t see a cool photo to take, they can help you see it.

Above: watch a slideshow of the images taken by the young carers from Surrey, set to music written and performed by young carers from Wales

“Some people put raindrops on their pictures, so you know they’re feeling sad”

“I learnt a lot about myself on the project. I’ve learnt that I really like taking photos, and also that I’m really good at making friends. People tell me that, but I didn’t think it was true, I thought I chatted them to death. But I realised I don’t actually do that, we just talk and then realise we like the same stuff and we both have the same feelings.

“I get the chance to be creative after school quite a lot. Sometimes I’ll search up images to draw or paint. I used to do lots of painting and I painted this girl with blue and green strands of hair, it was really cool.

“I think it’s important to get the chance to be creative because you can express your feelings in just one picture. Some people put raindrops on their pictures, so you know they’re outside or they’re feeling really sad. Sometimes they have thunderclouds, or the sun if they’re feeling happy, or lightning if they’re feeling worried. I think lightning and thunder can really show how they’re feeling. When it’s thundering and lightning outside the sky has got its emotions out.

“I have skills that other young people might not have”

“Being a young carer can affect my schoolwork. My brother usually helps me with maths but he’s at college most of the time, so I struggle. However, as a young carer, I have skills that other young people might not have. I can rush about faster and if my mum needs me to do something she can’t do, then I just do it straight away. My mum also has a bad lung so she gets out of breath easily, just going up the stairs. We often have to get her a glass of water or something to eat.

“I don’t really think about the future because I’m focusing on the present. You don’t know what’s going to come the next day. My mum says she’s fine, but I know she’s not because she can’t breathe most of the time going up the stairs. These projects help me not to focus on stuff that’s happening at home. It makes me feel free from all the responsibility. It also helps me escape reality. It’s like reading, when you doze off in a nice read.”

This project was delivered in partnership with Carers Trust.

Meet Adult Carer Jack: “After four weeks of writing, I’m stunned!”

creative:voices is Create’s multi-artform programme that enables adult carers across the UK to take a creative break from their caring responsibilities. Working with our professional artists, they build trusting relationships with their peers and develop creative and social skills, new interests and confidence, enhancing wellbeing.

During January and February 2022, our professional artists Heather Milstead and Simon Mole led a series of creative writing workshops with adult carers in Leeds.

Adult carer Jack told us about his experience.

“IT’S EASY TO LOSE YOURSELF IN CARING.”

“I care for my wife right now, but I’ve cared for quite a few people over the years. I started caring 10 years ago for a friend who was dying of a brain tumour. After that I was caring for my parents. In 2016 my father fell and fractured his spine at the age of 94. We had to look after him and that was a really difficult one. He died six months after, but then I was caring for my mum. She was 94 and she died three years ago.

“I’ve been caring for my wife almost the entire time we’ve been married. She’s from Northern Ireland and grew up during the Troubles. She suffers from complex PTSD, an acute anxiety disorder, which affects her behaviour in a number of ways.

“Being a carer limits what I can do. My wife needs a lot of emotional support. I have to be very careful what I say and do when I’m around her. I try and give her a lot of encouragement. It’s not always easy.

“The biggest challenge of being a carer is getting the help that you need yourself. It’s easy to lose yourself in caring. The compassion fatigue is challenging. When my mum died, I didn’t feel grief at first. All I felt for the first month was relief.

“AFTER FOUR WEEKS OF WRITING, I’M STUNNED!”

“The Create project I took part in was mainly focused on poetry, something I’d never really done before or even thought about. My memories of poetry are from school, having to plough my way through The Lady of Shalott. After completing four weeks of writing, I’m stunned. I still can’t get over the fact I’ve written these poems. I’ve even looked online for places to submit them to, and I’ll definitely keep writing as long as the ideas keep coming.  

“Doing something creative felt … ‘wow’ is the word that springs to mind. I do a lot of photography but this was a different feeling. It was really exciting. I think my wife’s a bit surprised with what I’ve come up with. She’s seen a different side of me that she didn’t know existed, because I didn’t know it existed either.

“I like trying new things and as I get older I find it becomes more important not to get stuck in a rut doing the same things all the time. It’s important to get out of your comfort zone, and I can’t think of anything more outside my comfort zone than writing poetry. The project taught me that the rules can be broken. You can get away from the norm and end up with a poem that’s probably better than if you had stuck to the rules.

“IT’S GIVEN ME A NICE WARM GLOW.”

“Writing poetry is really cathartic, the process has felt like it’s soothing something in me. Projects like this one give you something else to think about rather than what’s going on around you. They take you out of yourself. In my case it’s given me the confidence to do something different. It’s boosted my self-esteem. I think, ‘wow’, I’ve written a poem, something I never thought I could do. It’s given me a nice warm glow.”

Meet Aarchna, an adult carer from Harrow

creative:voices is Create’s multi-artform programme that enables adult carers to take a creative break from their caring responsibilities, build trusting relationships with their peers and develop communication skills, new interests and confidence.

During October 2021, we worked with 11 adult carers from Harrow aged 26-60 for eight weeks of music workshops with our professional musician Fernando Machado.

Aarchna told us about her experiences:

“I care for my daughter who has had mental health issues and I also care for my elderly mum. My role is very busy. If you are in a full-time job, in normal circumstances you do 9-5 and then you’re finished. But as a carer, it’s a full-time job. They’re calling in the middle of the night, there’s always something that’s not right so you’re a fixer basically. You just have to keep on fixing, fixing, fixing all the issues they have. So it’s a very difficult role, but it is for life, and you’ve just got to take each day as it comes.

“I enjoyed the group work, I enjoyed writing the lyrics and everything together. Working with a group of carers, we created something really nicely co-ordinated. I never knew I would love musical instruments because some of the instruments I’ve never even seen! So now I’m actually looking at anything in my kitchen that can make some sort of rhythm or noise.

“I’VE DECIDED TO TAKE UP GUITAR LESSONS”

“I was so impressed with the way Fernando introduced us to all the different instruments – the guitar particularly – that I went out the next day, saw a guitar at a charity shop and I just couldn’t stop looking at it. So in the end I bought it and I’ve not stopped using it! I don’t even know any notes of music but just having the guitar on my lap and listening to the sound, even if it’s not tuned, it’s just so relaxing and I have now decided that I will take up some lessons.

“THESE PROJECTS TAKE AWAY THE ISOLATION”

“Projects like this really help carers because we come away from the caring world to something different and it’s very special because our world is in a bubble. It’s 24/7 and you’re so sucked into it that you forget your own self. These projects give you an opportunity to see what you’re capable of, doesn’t matter what age. It gives you happiness. It’s meeting other people and you don’t feel so isolated. So I think projects like this are really helpful. It really just takes away the isolation because you’re struggling on your own. People say they’ll help or they understand, but really, they don’t know what you’re going through in your day-to-day routine. So our world is different.

“As carers we always look after everybody else and you never ever think about yourself. So to create something for yourself with alike people, it just made me think that there’s something inside you, there is a talent. I think Create works for the words it says, it created something in us. It gave us an opportunity to create something which we never knew we had.”

creative:voices Harrow was supported by Arts Council England, awarding funding from The National Lottery.

Meet Alexandra, an adult carer from Leeds

creative:voices is Create’s project giving adult carers the opportunity to explore their creativity in high-quality creative arts workshops. In October 2021, members of Carers Leeds took part in collage workshops with our professional artist Renata Minoldo. We spoke to Alexandra about her experience on the project. 

“I’ve been caring for about six years now. My father has a lung condition, which is terminal. A couple of other family members who are closer to home have had illnesses that have left them feeling very anxious and struggling with their mental health most days. With my father it’s a degenerative disease so we know the stages it will go through, but the mental health side is much more unpredictable and therefore more difficult from a carer’s perspective.  

“I didn’t really appreciate how many different technical forms of collage there are. It’s not just cutting a sheet out of a piece of paper. You can look at it from more of a surrealist perspective or an impressionist perspective. Or you could go out and collect materials from your garden and use leaves and flowers and bits of twigs and come up with more of a botanical piece of work. It’s really expanded my horizons.

“I’ve enjoyed mixing with the group and people of all different ages, viewpoints and backgrounds and it’s obviously influenced the pieces of work that we’ve done. But we’ve also formed mini friendships. We’ve all been supportive of each other and if one of us has said ‘I don’t think this piece of work is very good’ somebody else has always chipped in and said ‘well actually I see it like this’ and ‘I really like this aspect’ and it’s given you confidence that it doesn’t really matter whether you think it’s good or not, it’s just doing it and enjoying it. I feel quite happy and surprised at myself because I was quite proud of some of artwork.

RECONNECTING WITH YOURSELF

“Having the chance to be creative helps you use your brain in a different way. We spend a lot of time doing things that we have to do and you can get very stressed if that’s your whole life. Creativity just gives you that mindfulness space, that time to recharge your batteries, or to have a go at something you didn’t think you could do and get that sense of achievement from doing it. So I think it’s really important to do something like this.

“It also gives you a bit of a chance to be you, because a lot of the time carers lose a big part of their identity when they become the person who is looking after someone else. They sacrifice a lot of their own life, their own wishes and ambitions and things they’d like to be doing with their time because they have these other responsibilities. So this gives a little bit of that back. You can do something for you. You can do it on your own terms. You can just be you, you’re not having to be the carer, you’re being yourself, which is nice because you sometimes lose your identity a bit when you’re supporting someone else.”

creative:voices Leeds was supported by Arts Council England, awarding funding from The National Lottery.

Meet Lachlan, an adult carer from Scotland

creative:voices is Create’s multi-artform programme that enables adult carers to take a creative break from their caring responsibilities, build trusting relationships with their peers and develop communication skills, new interests and confidence.

During September and October 2021, thanks to our partnership with First Sentier Investors, we brought together 16 carers from Edinburgh and Glasgow for six weeks of online photography workshops with our professional photographer Alicia Clarke.

Lachlan (not his real name) told us about his experiences.

“I care for my wife. We’ve been married for 44 years. About seven or eight years ago, completely out of the blue, we thought she’d had a nervous breakdown. It ended up with her being in the Royal Edinburgh Hospital on several occasions, the first time for 10 weeks. It turned out she had developed bipolar disorder.

“I worry about my wife’s condition, she’ll be on medication for the rest of her life. The medication has changed her character a bit. We’re very scared of reducing it even slightly because she may become ill again, and we’re trying to avoid her ending up in hospital. So that poses challenges. It’s not easy but I’ve learnt to live with it. Care for Carers have been very supportive.

“I’ve always found it difficult to talk to people. I’m a bit of an introvert. This project with Create totally put me at ease. I found it very easy to talk to the other people. I just loved every minute of it. Each week I’d be apprehensive, and then within five minutes I forgot about any inhibitions and just sat down and enjoyed myself.

“I found the photography very challenging and very interesting. I love street photography, landscape photography, that kind of thing. When it came to still-life portraiture it really tested me because half the time I couldn’t think of anything to do. But when I saw other people’s ideas they were very clever, it gave me ideas and I just thoroughly enjoyed it.

FINDING FRIENDSHIP

“The project has taught me to challenge myself and try things that I’m not comfortable with. When Alicia told us what she wanted us to do, I was frightened actually! It took me completely outside my comfort zone. When I came up with an idea, even if I didn’t think my own stuff was very good, the end product pleased me. It really was quite exciting, especially for someone my age.

“Part of this project, too, was speaking to the ladies from Glasgow and Edinburgh, and it was lovely meeting them. They were really lovely people. On one of the projects we were supposed to do, I was so busy talking to one of the women in my group that we completely forgot what the project was! For that short time I felt we became friends, which was lovely. We’ve all got similar problems, caring for people, etc, and for that short while we either discussed some of our problems or it took our minds off it completely and relaxed us.

“Alicia is a very, very fine photographer. I think it sets a very high standard for the project when you’ve got somebody as good as that. She put you at your ease and she was interested in our thoughts, and if she couldn’t answer your questions she would go away and find out. She took a real interest in the people.

“With the project and the tasks Alicia gave us, it now focuses me on different ideas: I will now go to the Botanics at some point and try to do some flower photography; or do things in the house that I wouldn’t normally do. It has opened up new ideas for me.”

Meet Harrison, a young carer

art:space, Create’s multi-art programme with young carers, is delivered in partnership with British Land.

In August 2021, our professional artists Alicia Clarke and Teresa Paiva delivered photography and ceramics projects with Southwark-based young carers. This gave the young carers a break from their responsibilities, encouraged them to build trusting relationships with their peers and developed their social skills and confidence, enhancing their wellbeing.  

Harrison (not his real name) spoke to us about his experiences of taking part.

CARING IN LOCKDOWN

“I care for my mum because she is going through a tough time right now. She has helped me, so I repay her by taking care of her. Sometimes it can get a bit stressful for me because when my mum is in pain it upsets me and makes me worried.

“Lockdown was really hard for me because I had to stay home. I didn’t feel great as I had to spend more time alone. These projects have helped me feel less isolated because I get to be with other people.

“I heard about the projects through Southwark Young Carers. I took part in photography workshops and ceramics. In photography, we got to go out to different places around [Surrey Quays] shopping centre and take photos of the lake. In ceramics, we got to create things with clay and then we made shrines. Doing creative workshops in person was really fun and I got to use my creativity.

“I would like to take photography as a GCSE now!”

Harrison

“The artists, Alicia and Teresa, were really fun and they helped me a lot. They helped me understand and they also taught us a lot of different things that I remember today. I would like to take photography as a GCSE now. I went to the photography project and took part and I feel like it can really help me when I grow up. I was interested in photography before but the project made me a lot more interested, because we were able to grow and learn different things and be creative.

HOW CREATIVITY HELPS

“Doing something creative felt really good. It’s important to be creative because it allows you to make your ideas into a reality. Doing things with other people made me feel happy and helped me a lot too. Meeting new people was nerve-wracking at first because I didn’t know anyone but as it went on, I became more confident.

“Projects like this help carers like me because I learn new things and it gives me time to myself. I feel less isolated because I get to be with other people, and I feel more connected to my community. The projects have helped me change for the better!”