Participant Group: Young and adult carers

Meet Lily, a young adult carer

inspired:arts is our multi-artform programme with young and young adult carers. During the pandemic, many of the projects have been taking place online, via our Create Live! delivery mechanism.

In August 2021, our professional artist Lucy Marriott delivered an online photography project with young and young adult carers from Milton Keynes. This gave them a break from their caring responsibilities and encouraged them to take time out of their day to be creative.

Lily (not her real name) cares for her mother who lives with epilepsy. 

I was six years old when I began caring, I’m 23 now. My mum is quite an unwell lady so I started caring very young. She had taken on a lot of responsibility and, with her being unwell, it became obvious that my brother and I would have to take over some things.

When I was younger I just helped her with a number of things because one of her health issues is epilepsy, so her memory goes. Obviously the caring role increased over time and I basically do everything around the house, except helping her with money.

“An idea could be brilliant but with a group of people, it becomes outstanding.”

Young adult carer lily

Today we were doing a photography workshop. I felt quite proud of some of my images. I really liked how each photo got a comment on what was liked about it and the intention behind the images. I really liked how encouraging and supportive Lucy was. We were able to bounce ideas off each other and everyone was equally respectful of each other. One idea could be brilliant but with a group of people it becomes outstanding.

As a carer, the social side has been hard. When it comes to making friends it’s quite hard for me, even to this day, because that social learning from when you were younger never really took place. Projects like this one with Create are great because you’re learning and having fun but also being social. You’re seeing people who are in the same situation so you don’t feel alone, knowing there’s a support system out there if you need it. Even though today was just a few hours and we were at home, it still gives us that space to interact with each other and have fun.

Photograph taken from one of our inspired:arts Milton Keynes workshops.  

Meet Laura: “The workshops have helped me learn the value of money”

change:matters is an important new programme that is educating and upskilling young carers across the UK on the topic of money and family finances.

Over three days in August 2020, Create’s professional Artist Chloe Cooper delivered visual art workshops with young carers from Milton Keynes.

One of these young carers was Laura (17) who cares for her twin siblings, both of whom are on the autism spectrum, and her mother who has fibromyalgia and arthritis.

“I care for three people in my household. I care for twins who both have autism and my mother who has fibromyalgia and arthritis. I help make sure the twins know what is going on around them and I help them with their basic needs like getting dressed and making food. I help my mum carry things around or help her with the twins if her back is hurting. I often look after the twins so she can have a quick rest. I’ve been caring for the twins since they were three; they’re 10 now, so about seven years in total.

“As a young carer I feel like I’ve definitely had different experiences. There are some people who don’t know about or understand mental and physical disabilities. Compared to other people, I’ve got more of an understanding of how these disabilities could affect people and how I can help.

THE VALUE OF MONEY

“Through the art project we’ve learnt different financial literacy words and what they mean. We created comics using those words to develop more of an understanding of how money is going to impact our lives.

A comic book made by young carers from Milton Keynes on a change:matters project

“I was a bit nervous meeting new people over Zoom. I’m not much of a people person, I don’t spend time in giant groups often. But after a couple of hours of getting comfortable and getting to know people, it was so wonderful! I got to enjoy myself and I felt like I made other people happy around me. Some of the kids asked me to help them draw or give them advice, and we were able to give each other feedback, which was just so fun.

“Through the project I learnt about the difference between a current account and a savings account. I thought they were the same. I also learnt about the difference between a debit card and a credit card. I had no idea a credit card was borrowing money from a bank, I thought they were the exact same thing. I learnt how interest can vary and how interest works and how it can be in our favour instead of the bank’s favour or in the favour of the person you owe money to.

“The workshops have helped me learn the value of money. When you’re growing up, you don’t realise how much or how little money you have, or how it works in the real world.

A COMMUNITY OF CARERS

“As young carers we are a community of people that help others close to us when no one else properly can. Bringing everyone together to have fun, relax and be themselves – even if it’s just for a couple of hours –  is amazing because you get to find out other peoples’ interests and you meet people you never thought you would meet in your entire life. It’s really wonderful to be part of a community of young carers.”

A comic book made by young carers from Milton Keynes on a change:matters project

change:matters is funded by The Chartered Accountants’ Livery Charity. Additional support has been provided by Network for Social Change and The Worshipful Company of World Traders.

Meet Corinne, an older carer

art:links is Create’s national project with older people including older carers. The project works to reduce isolation and promote wellbeing through the creative arts, empowering participants to stay active, develop new skills and make friends.

Between May and June 2021, members of Age UK Islington took part in creative writing workshops via Create Live!, our online delivery mechanism. The project was led by our artist and writer Linden McMahon together with Nurturing Talent artist Rhys Cook. It was funded by Masonic Charitable Foundation and The Mercers’ Company.

Meet Corrinne

Corrinne (60+) is an older carer based in Islington who took part. She spoke to us about her caring duties and how being creative has added more colour to her busy life.

“I look after my 94-year-old father, who I spend the best part of two days a week with. He’s in quite poor health. He has leukaemia and other serious health issues, so going to support him is quite trying. It can be challenging because he has dementia too and wants to hold on to his independence.

“There’s been a lot of stress since my mum died a year and a half ago. I do think I have lost myself somewhere because you just spend so much time thinking and doing for other people. You’re continually catching up on yourself. My health isn’t 100% either. I’m still recovering from chronic fatigue syndrome with depression going on in the background. To have this chance is like a lovely breath and change to the rhythm of life.

“I think it’s important to be creative because it just takes your mind off the monotonous and tedious everyday. It’s so refreshing. It really is good for you to do that.”

Corrinne

“I joined a Create project about creative writing, which is based on a mixture of non-fiction and fiction. It’s about creativity, which is basically just a pull-out from yourself, about things that sometimes you don’t even know are there. With the correct tools, you can discover things about yourself that you didn’t imagine were there, and that’s why I have loved it. You can go from the oblivious to the sublime. Really, you can go from real life to sci-fi to the mythical. It encompasses virtually anything. I think creativity is fuelled by so many things like your background, your personality, your life experiences, everything. It’s really therapeutic because you just release something.

“It was great working with Linden and Rhys. They are a great team. Linden is very encouraging, very nurturing, makes everything easily accessible, and Rhys just backs them up on that and adds their input as well. The balance was perfect. I never felt threatened, never felt under pressure. It was great.

“Working with other older carers was very enriching because we’re all from such different walks of life and going through different stuff, but everyone was good-natured and kind to each other. We critiqued; we didn’t criticise. It’s a lovely group to share with and to brainstorm with, and to share humour with.

“I think it’s important to be creative because it just takes your mind off the monotonous and tedious everyday. It’s so refreshing. It really is good for you to do that. Even if you only get a chance to walk to the park it’s great because for me, I absolutely love just to observe and take in nature. Otherwise, I think your mind would get overwhelmed with thoughts, stress, problems and just take you away.”

Meet Georgina, a carer from Merton

Between November 2020 and March 2021, we delivered a series of creative projects run by our professional artists with older carers at Merton Dementia Hub as part of our art:links programme: photography with Alicia Clarke, music with Mike Poyser and radio drama with Jack Pryor.

These projects, delivered online via Create Live! enabled a group of older adult carers to express themselves through different artforms while developing new skills, reducing isolation and forming lasting friendships.

We spoke to Georgina (61) about the three projects, the impact they had on her life and the connections she forged with other carers in the process.  

“I started caring for my mum about seven years ago. She was diagnosed with Alzheimer’s when she was 82. It was good we got that diagnosis because it meant that we could then move forward with what we as a family could do to help her.

“My two brothers live with her. My role is to manage all the doctors’ calls. I keep a file on my mum so she’s got records of all the medication and the problems she’s had. When we go to the hospital, we take the folder so everyone knows what’s been going on.”

Participating in Create projects

photography

Click through some photos from this project below:

“I’ve been part of several Create projects with other carers. The first one that I did was the photography one with Alicia. It was really good. She got us to take photographs and upload them so we were able to see what everyone had done and how they’d interpreted the topic for that week.

“One of the things I’ve learnt from this project is about photographing at a particular time of day. Dawn and sunset are really good times. You also have to think about what your intention is when taking a photograph. What is it that you actually want to focus on? I think photography is something you can always build on.”

Music

“The photography project was also the first time I met a lot of the other carers. It was a good introduction to everybody and I was able to see them again in the next workshop which is the one that Mike did, all about music. It was really good because we didn’t know what to expect and it was really fun.

“We got to write lyrics for a quirky COVID song and we made noises with everyday objects. It was really interesting because you could be really inventive with sound. Things you wouldn’t necessarily think that you could make a sound with, you could!”

Radio play

“We’re now doing a radio play project with Jack. We’re recording a story about magic objects that has become a really long story with all these different objects, what they do and where they take us. I’ve really enjoyed it. You have to get used to hearing yourself say things and do things that you wouldn’t normally do, and also critiquing your own performance. I didn’t know what to expect but it’s a good way of doing something completely different.

“I’ve learnt I can have a go at things”

“Through these projects, I’ve learnt that I can have a go at things. I can try things out and I can make a fool of myself if I want to and that’s ok because other people don’t even notice when I do. Maybe I’ve also learnt that I’m not so bad at coming forward.

“I’ve also really enjoyed meeting everybody, getting to know other carers and being part of a group. We’re all different, we all come from different walks of life but one thing we all have got in common is that we’re all caring in some way.

“Creative projects like this add a bit of a fun element to life. I think we all need something different and fun in our lives, no matter what we’re doing, particularly when you’re a carer. It just adds another vantage point to life and I think it’s good to have that. It’s good to have lots of things going on to keep life in the balance. It’s quite refreshing to feel that you can offer something that isn’t the norm.”    

Supported by:

Meet Sarah, a carer from Glasgow

Between February and March 2021, we took our creative:voices programme for carers to Scotland for the first time, thanks to our partnership with First Sentier Investors.

The visual arts project, delivered online via Create Live! by our professional artist Rachel McGivern, brought together carers from Care for Carers Edinburgh and Glasgow East End Community Carers over several weeks. It enabled them to meet new people, explore new modes of self-expression and develop creative skills including drawing, print-making and weaving, all from the safety of their own homes. 

Sarah (33) cares for her two sons. She shared her experiences of taking part in this project and how it has enabled her to reconnect with herself.   

“I care for my son. He’s five years old. He has been diagnosed with autism and also has reflux, which he has had since he was a baby. It’s 24-hour care. He’s had sleep issues so you don’t get enough sleep at night-time. He throws up quite a lot during the day, so there’s a lot of caring and cleaning up involved. It’s a very busy role, not only on the emotional side of things but physically as well.

“We also suspect that my younger son (4) may have ADHD. He’s very, very hyper and has sleep issues as well. It’s a lot of energy in the house. You have to withhold your self-expression just to carry on.

“I had to stop and say ‘I need to do something for myself’. This art workshop was the perfect opportunity. If the workshop wasn’t there I wouldn’t have stopped.”

“I feel really liberated”

“Most of my artworks from the workshops are unfinished, but I feel really liberated. I used to be an arts student, a long, long time ago, but my health has not been the best, and my caring role kept me away. So it was really nice to come back to this, to reconnect.

“This was a really important workshop for me, to feel confident in myself, to find my identity again. As a carer you lose your identity, you feel as if all you’re doing is looking after somebody else, and that somebody else becomes your number one. This break of two hours away … it was really nice to find myself again.

“This was a really important workshop for me, to feel confident in myself, to find my identity again.”

Sarah

“The first day I didn’t realise the Edinburgh Carers Centre were going to be involved as well. It was really nice that we were able to cross the cities and meet new people. Everybody was coming from different backgrounds, and everybody was really friendly.

“I learnt that, with visual art, nothing is right and nothing is wrong. Anything is your interpretation. Everybody had different colours, different ideas to display. They were all different, they were all unique. That’s something really interesting in visual art: your perspective, and your creation. You learn all these different mediums to express that, so it wasn’t just sketching. It was also a bit of paint work, print work, weaving using recycled materials.”

Standing Taller

“It’s difficult to describe the feelings you get [from being creative]… You feel more confident in yourself. You see a different side of yourself: that you can do something. And that something gives you more confidence to stand a little bit taller.

“Since taking part in the workshop, my husband has gone out and bought me a sketchbook. What I’ve learned from the project is that I will definitely carry on. If I get some more time to myself, I wouldn’t mind picking up my sketchbook and sketching up something really simple.

“I’ve already got a project for myself for the summer from the printmaking. I’m going to take some bags and T-shirts and print them up in something boyish so I can make something for my boys. The skills have definitely been handy, and I will definitely take them forward.”

Supported by:

Let’s dance: three young carers talk about dancing over Zoom

This February we teamed up with Carers Trust to run three dynamic dance projects with young carers in the South and South West of England during the half-term break.

Our professional dancers – Beth Coleman, Natalie Haslam, Amy Toner and Nikki Watson – led groups of young carers from Brighton & Hove, Bristol, and Buckinghamshire in three-day dance projects that gave them a chance to meet new people, express themselves and take an active break from their caring responsibilities.

We spoke to three of the young carers to find out about the challenges they face and get their feedback. All names have been changed to protect anonymity.

Meet Poppy

Poppy (11) cares for her brother, Jack.

“I care for my brother Jack who’s autistic and I have to take care of him because sometimes it’s hard for my parents to do it on their own. I try to ignore it [thinking about my situation] as much as I can and try and play with my friends. I’m proud of myself and how I cope with it.

“I’d describe the workshop as one of the best experiences of my life. It was basically the first young carers thing I attended. I met a really nice person called Olivia as well. I got her phone number and when I got home, she added me to a group where I met 10 other friends.

“I liked getting to know everyone and making up dances with everyone. If I liked their dance style, I could memorise some of the ideas for another time. I have a private account on TikTok and I just love to get a random sound and be weird on there. You can try anything as long as you know that it’s not about you being good. It’s about you having fun and enjoying it and wanting to do it more.” 

Meet Erin

Erin (9) cares for her older sister, Emma.

“The first lockdown for Emma was really hard and she got really frustrated doing her work. Sometimes she’s happy and sometimes she’s not happy so I have to leave her alone or I have to play with her if she asks me to play. I don’t get to choose what to do – Emma chooses.

“Having this project has really made me feel free. We’ve been doing dancing and moving and energetic kind of stuff. We created our own moves and then we put them in a different order. It’s been fun.

“I enjoyed being creative with others. It made me feel quite happy because I can meet people on Zoom. I think it’s important to do creative things because then you can show people who you are, what kind of person you are just through art.”

Meet Bethany

Bethany (8) cares for her mother.

“We care for mum because she has a chest condition and her heart stopped. When she gets very ill, I have to call my sister or my brother or bring her things.

“The workshops made me feel weird (in a good way) and happy. We danced and played games. We made a Jacket Dance where we came up with a few moves of our own and did a solo performance.

“I do creative things by myself all the time but this is the only [creative] thing I’ve done this lockdown. I felt happy. I learned how to dance better than my sister. It was literally like somewhere without the coronavirus everywhere around me. It was a lot of fun.”

This project was part-funded by Carers Trust via a grant from the Department for Digital, Culture, Media and Sport, as part of the Government’s £750 million Charity Package #CommunitiesCan #letstalkloneliness

Meet Harry, a young carer

Nine-year-old Harry is a young carer who looks after his younger sister, who has autism, and his toddler younger brother.

On average, young carers like Harry provide 17 hours of care a week, which can have a significant effect on their schoolwork, ability to form friendships, and mental or physical health.

Christmas can be an especially challenging time for young carers, as their responsibilities increase. In December 2020, we partnered with Lambeth Young Carers to give 12 young carers the chance to take a break from their responsibilities and have some festive fun, supported by Greater London Authority via Groundwork. They took part in a three day comic-making project with our visual artist Chloe Cooper. The project was delivered virtually, via Create Live!

We caught up with Harry after the workshop to learn about his life as a young carer and how this workshop helped improve his wellbeing.    

“I have to look after two – Juliet, my sister who is autistic, and she needs help a lot; and my brother, Oliver because he’s a baby. When my sister goes to the toilet, she always needs someone to be with her to supervise her. 

“For my brother, I always have to try and distract him while my mum cooks. All the time. I always keep an eye on him. When I play games, I have to stop to help Oliver, then get back, then help Oliver, then get back, then help my mum, help my dad. It’s stressful.

“I always have to stop Juliet from carrying Oliver because she thinks he’s a doll and she starts to throw him all the way up to the ceiling and lets him fall to the floor. So when I hear him screaming, I go “oh boy!” and I have to run and walk and then Juliet goes “ai ai ai”. Then she puts him down.

“I really enjoyed the comic-making workshop. I especially enjoyed drawing my characters and helping everyone get ideas. I learned about characters, sound effects, speech bubbles, thought bubbles, captions, panels and backdrops. The workshop made me happy – I really want to say: ‘Oh guacamole!’ It’s my favourite line.

“I think projects like this are good for young carers because they refresh their minds. I can take a break just until 3 o’clock and then go back to helping mum or dad. I feel like I have taken a big break and I feel refreshed.”

CLICK ON THE COMICS TO SEE THE YOUNG CARERS’ WORK

All names have been changed to protect anonymity.