Get to Know Leila

In this episode, we get to know Leila: a carer, researcher, artist and illustrator who supports her younger brother. Leila chats with Rose, a young carer studying Health Science who is passionate about raising awareness of carers and people living with disability in the community. Leila and Rose chat about Leila’s interests, looking after herself and making plans to move out of home.

This episode of YC Bytes was hosted by Nina Longfellow. It was written and produced by the Carers NSW Young Carer team. The Acknowledgement of Country was recorded by Lua Pellegrini, Wiradjuri Woman and young carer who grew up on Darug country in Western Sydney. Special thanks to our speakers who contributed to today’s episode.

If you are a carer, or if you know a carer aged 18 years or older who is interested in advocating for carers in NSW, check out the Carers NSW Carer Representation Program. Becoming a Carer Representative provides opportunities to do this through policy, committee, media and public speaking activities. For more information, please visit the Carers NSW website.

For support as a young carer, check out Carer Gateway or call 1800 422 737 to find out what’s available in your local area. Carer Gateway is a national model of carer support available to any carer across Australia.

Carers NSW is the peak non-government organisation for carers in NSW. We provide information, education and training, research, resources and a range of carer-specific programs and projects to support and raise awareness of family and friend carers in the community. For more information about Carers NSW, please visit the Carers NSW website.

Contact the Young Carer team by calling 02 9280 4744 during business hours, or email yc@carersnsw.org.au.

Subscribe to Carers NSW monthly YC eNews to stay up to date with opportunities and updates from the team, and follow the Carers NSW Young Carer Program on Facebook.

Transcript

Leila:
If you know a young carer, try to help them make space for themselves again.

Nina:
Welcome to season two of YC Bytes, a Carers NSW podcast series focusing on young carers. My name's Nina, and I'm excited to be your host for this season.

Lua:
On behalf of Carers NSW, I would like to acknowledge the traditional custodians of country on which we live, learn, and work. We acknowledge the wisdom of Elders past and present, and pay respects to all Aboriginal and Torres Strait Islander communities of today.

Natalie:
In this series, you'll be hearing the voices and stories of young carers. In New South Wales, young carers are children and young people aged 25 years and under, who help care for a family member, partner, or friend living with a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness, or who is frail.

Nina:
Our aim is to raise awareness in the community about young carers, as this is a group of people who are often not recognised or understood. In this episode, we get to know Leila. She met with Rose to chat about gaining independence as a carer and moving out while prioritising her own needs and avoiding burnout. Before we listen to their discussion, I'm going to share a bit about who they are and what they're up to. Leila is a carer living in Sydney, working as an artist, illustrator, and researcher. She's currently working on a project examining how Western Sydney University supports their staff members who hold parent and carer responsibilities. Rose has been a young carer for over 15 years. Over this time, she's gained a wealth of experience and understanding firsthand of life as a young carer. She's studying health science at Western Sydney University and is looking to pursue a career using the foundations of her caring experience. She's been a voice in her community promoting and recognising both carers and people living with disability.

Rose:
Hello, and so lovely to have you here today. I just want to chat and get to know you a little bit more. So how about you tell me about yourself and your caring role and what types of things you do to support your brother?

Leila:
Yeah, so thank you for having me, Rose. I'm really excited to be here. So I am an artist, a researcher, and a carer, and some of the stuff that I do for my brother, it's kind of varied over the years, but I've kind of moved into more administrative support kind of role for him. So I do a lot of his NDIS paperwork and organising his doctor appointments and physio and OT and whatnot, and kind of just making sure that we're trying to build his independence in these ways. My mum is his primary carer right now, and so when she needs to take a break or she needs someone to come and help out around the house, I come back.

Rose:
You step up in that role?

Leila:
Yeah. So I'm supporting the primary carer in providing that care.

Rose:
No, it's so rewarding hearing carer stories. As a young carer myself, I think it's really important to hear how roles can also change over time. I start my day with two Weet-Bix and some skim milk. How do you start your day?

Leila:
Yeah, look, I'm not the best morning person. Mornings are pretty rough for me, so it can really vary depending on the day. And I'm quite lucky because a lot of my work is quite flexible, so I can take the mornings a bit slower.

Rose:
Sleep in a bit.

Leila:
Yeah, sleep in a bit, take it a bit slower and give myself a bit more time to figure out what I need to do.

Rose:
That sounds cool. So obviously you've been in this caring role for a while. Do you think that your caring role supporting your brother has influenced your decision to pursue some of your interests? So, what are you... Outside of the caring that you do, what kind of stuff do you get up to?

Leila:
Yeah, so I think I started caring for my brother more formally when I was around 15, and so that was towards the tail end of high school. I would stay at home with my brother and just make sure that he's okay. And in that time, there was a lot of downtime, so I would draw a lot, experiment with photography and-

Rose:
Really creative stuff.

Leila:
Yeah. I took the time as an opportunity to work on skills that I was interested in learning, even knitting and stuff like that. So that was all stuff that I took advantage of when I was responsible for my brother and caring for him.

Rose:
Yeah. Because I know for me in high school sometimes, trying to balance school and caring responsibilities, did you find that having outlets outside of caring… Personally, I found that obviously caring is part of my life, but there is also so much more to my life and who I am as a person, which I think is really important that it doesn't define who I am. It's part of who I am, but also there is so much more. And did you find that balancing that also let you be a young person as well as a young carer?

Leila:
Yeah, there's definitely external pressures to try and define you as just a carer or just a student or just this. But I guess caring is something that's so ubiquitous through my life, it's an undercurrent to everything I do, and so it influences my choices and how I spend my time and what feels like a good use of my time.

Rose:
I find sometimes goal setting a little bit challenging. However, setting goals I think have also contributed to a lot of things, being able to manage myself, managing caring roles. How do you feel about setting goals and is this something that you find helpful? Does it drive you? How does goal setting fit into your day-to-day life?

Leila:
I think it can be really easy as a carer to lose yourself in all of the day-to-day and admin tasks that kind of pop up. Goal setting has been really helpful for me in taking some time to reflect on what I want to do and just making sure that I'm taking care of myself as well. I don't really mind so much not achieving those goals. I think it's just the practice of taking a step back and thinking about what I want to do that I find more helpful about it. That's not to say I haven't achieved some of those goals, but I definitely don't put that pressure on myself to achieve it or feel guilt if I look back and I haven't.

Rose:
I think that's important as well. You might have small goals, you might have larger goals, short-term, long-term goals, and I think it's important that you work towards them, but it's okay if you don't get to them.

Leila:
Yeah. No, definitely. I think with caring as well, specifically, you learn to be very flexible when things change.

Rose:
Oh yeah, 100%. Because some of those skills almost you're saying like being flexible, I think that's a skill that sometimes people don't really associate with. How do you think some of the skills that you have developed and maybe learned through your caring role, but also through life have been able to be transferable in things that you are currently doing?

Leila:
Right now, I wear a lot of hats.

Rose:
Do you want to share some of those hats?

Leila:
Yeah. I work as a freelance artist, so I'll have art contracts from different clients come up. I work as a research assistant, and so research assistant work is a lot of contract work as well. So you're working for a short amount of time and then moving on to the next thing and I think being a carer, juggling all those different kind of tasks and responsibilities has translated really well into freelance work for me. I'm quite comfortable and not afraid of having multiple things running at the same time.

Rose:
So you've got time management skills. Pop that on your resume, number one, time management.

Leila:
Honestly. No, but I have definitely talked about it in interviews. When that question pops up, I bring up my caring experience.

Rose:
 I think it's important to recognise that caring has all those skills that you can take on a job and you don't necessarily even need to bring in that caring role, but you can say you've got time management skills, you can take initiative and responsibility. And I think that's good. With goals, again, I see- five years is a long time, and I know some people find this question a little bit challenging or it's like, "Oh, five years, five years from now," do you have goals? Or even just in short-term in the next couple of years, where do you see yourself? What are you kind of interested in doing, pursuing? Is it- we see you in some art magazines or research stuff?

Leila:
Yeah, weirdly looking five years into the future is not really daunting to me. I guess it's exciting.

Rose:
So many possibilities.

Leila:
Yeah. One of my key goals is to help my brother gain more and more independence. I think it's something that not only will benefit him but will benefit me and the rest of his support network. The more independence he has, the more agency and the more choices he has in how he wants to live his life. And then for me personally, I have been freelancing now for two years, but doing it full-time for the last six months. And I think I'm really excited to see whether I can sustain that, and I really want to complete a PhD. I think academia and research more broadly is a space that works really well for not only my creative interests, it's quite like a creative field, but also it has flexibility that isn't really present in other industries. So I really want to take advantage of that and really bolster my academic career.

Rose:
Sometimes in life as a carer, there can be challenges. I know from experience myself. Can you think of a time in your life that was quite challenging and how did you overcome it? Tell us some tips, maybe some tricks in how you support yourself and your wellbeing.

Leila:
Yeah, obviously there have been some times as a carer that had been really challenging. I remember when I was finishing high school, I was in year 12 doing my HSC, things really ramped up in how I needed to care for my brother and his caring needs just became quite a lot more intense during that period. I had in my mind, I'll be caring for my brother through high school, but I'll get to dedicate those last few months of year 12 to just really-

Rose:
To you and to your study.

Leila:
Yeah. And unfortunately that wasn't really how it panned out, but I guess I relied in my family. I was quite open and transparent with my school about some of those challenges and so a few of my teachers really stepped up and they kind of provided me with extra tutoring and mentorship in that time. And I think I just pulled deep from the reserves if I wasn't caring for my brother, I was writing essays and preparing and studying. And I definitely knew that I was going to burn out, but I was kind of planning for the burnout to occur once I had-

Rose:
Post-HSC?

Leila:
Yeah. Post-HSC, I could take that time off and just really reset and just let myself re-energise, not feel guilty about not doing anything. And a challenge kind of popped up as I was doing my honours, and again, I kind of had this expectation that this was a year where I could really focus on myself, really focus on just dedicating myself to doing as well as I could. And that was in 2020, so through COVID.

Rose:
COVID as well, another challenge.

Leila:
Yeah. And so there was new anxieties and challenges that I had to work through with my brother and stuff. And yeah, I think both times it was just really important for me to rely on people and just not pretend that it wasn't hard. I think a lot of people-

Rose:
Put a brave face on sometimes and it's okay not to be okay.

Leila:
I would say one more challenge, which I think I've experienced was, I guess it's not in the caring dynamic change, but my needs changed. So in the beginning of last year, I think I decided I wanted to move out and transition from being a primary carer for my brother and kind of explore what my life would look like with a bit more space. And so, I talked with my family and mostly my mum because she was going to take on my more-

Rose:
More caring responsibilities.

Leila:
And we spent quite a lot of time preparing and working through how we could do this. We first had to increase my brother's NDIS budget, and so that required a few months of engaging with his-

Rose:
Providers and all of that background information.

Leila:
Yeah. And doing a review for his plan and just making sure that we had enough funding to afford for me to do this. And then also talking on that emotional level of how supporting him was going to look like in the future and slowly transitioning from that full-time to more distance role. And I think the challenge in that wasn't necessarily with my brother, but in kind of supporting my mum through that and making sure that her needs were also being met. But yeah, I think we've managed to stick the landing. It's going well now, but yeah, we'll see.

Rose:
First of all, it is a big step when you're a carer to then put a distance between yourself and not even the person, but trying to prioritise where you want to be in life and what your goals are as well, and I think that is really important. And I found that… maybe some listeners might also have that challenge or even just their thinking about, "How do I take that step as a young person to move out?" Because there's a time where people want to move out and start the next... Whether they're going off to uni or to study or to work or just to move in in a share house, who knows? I had a similar thing about a year or two ago where I was like, "I feel this strange feeling about wanting to stay." But also I was like, "I've been a carer and I love what I do, but I also... It's time to put myself first," which I find as a carer myself, I'm always putting even not necessarily my mum's needs, but my friend's, work. Everyone else I put above me, and it got to a point where I thought, "Right, I need to prioritise my wellbeing because I want to have a life that I enjoy and not being burnt out or risk being burnt out." So I made that step. And I think… obviously you mentioned you talked to your family. Do you have any other support networks? Do you talk to your friends?

Leila:
Yeah, definitely. So yeah, relied on all my friends and family and being open and transparent with them, but also talking it through with my brother's support coordinator, to be honest. They were really supportive and really helpful and kind of led the charge in how we were going to go through that review. I just want to also say that it's amazing that you took that step and prioritised yourself. I think for me, because my brother's younger than me, I was reflecting on the point that I will probably be his primary carer again in my life and that this is going to be a lifelong-

Rose:
It's a journey.

Leila:
Yeah, a lifelong journey and commitment and responsibility, and I'm excited to do that and I look forward to seeing how our relationship changes.

Rose:
And grows.

Leila:
Yeah. But you need to think about how you can sustain that healthily, not just for the person you're caring for, but also for yourself.

Rose:
When I look at my support network, I think of I've got my family, my friends, my partner. And I speak to a psychologist because I think personally that's helped me over the years, talking to a professional who's been able to guide me, I guess. I guess also guide me on who I am, but also how I find best to support myself. So, I put my cap on and I go for a walk. That's one way I find... Just spending 45 minutes to an hour outside, trying to do that daily just to get some fresh air, but also just to have ‘me time’. Sometimes I'll listen to a podcast, maybe YC Bytes. Sometimes I just listen to music or sometimes I just take out the headphones and just listen to the world around me. I also, I like to watch TV. I'm a bit of a notorious TV binger, but TV is an outlet for me. I do practice mindful meditation. That's not for everyone, I'm not plugging it here. It got me a long time to get into it, but they're kind of my top three things when I'm feeling that I need to take a step back, assess the situation, whether it's caring or whether it's my assignment that I might've put off last minute or whether it's something going on with friends, whatever. I just take that step back and breathe. What are your kind of three things that you do to get back into it, reset, or even just to spend some time doing stuff for yourself?

Leila:
Yeah, I think quite a few of them overlap. So watching TV, just taking some downtime. Walks are really-

Rose:
Good physical exercise as well, incorporating that in.

Leila:
Yeah. I can definitely fall into the habit of rushing everywhere, like almost running. And when there's a lot on my mind, I like to dawdle. That's what I call and I just-

Rose:
I like that. "I like to dawdle."

Leila:
Yeah, just walk around kind of aimlessly and sometimes I definitely fall into that kind of, "I have to do this right now or else everything else will fail." I think a lot of carers have this experience of they feel like we don't really have much time, and so if one thing falls to the wayside, suddenly everything else... Kind of that domino effect. And I've really tried to be mindful of not falling into that trap of thinking that everything is just going to snowball and it's just going to become a catastrophe.

Rose:
It's okay if one thing doesn't go according to plan or something, it's all right. We can pick it up and we can figure out without support or whoever it is to kind of move to the next thing. I noticed you like... Obviously art is a big part of your life and you've mentioned that before. Is there a particular style of art that you like to do?

Leila:
When I'm stressed out, when I'm trying to just calm down, I like to do observational drawings, so just drawing life.

Rose:
Okay.

Leila:
I guess you're not trying to imagine things, you're just looking at-

Rose:
Seeing it how it is.

Leila:
Yeah, you're just seeing things how it is. It's a bit meditative. And then I think the last thing I do when I'm not feeling great is just prioritising seeing... Going out and seeing people.

Rose:
I think it's so important, your friends and I think friendships are what got me through tough times in primary school, in high school, in university now. I think sometimes I feel it can be a bit challenging as you get older to make friends, but I think the unexpected friendships are the ones that people will just randomly will almost sense that I need to see someone and they're like, "Hey, Rose, want to go for a walk?" Or "We're going to the beach." And just seeing your friends because I think they're the ones that you may tell them about your caring life, you may not, but you're just friends. You're just a young person. And you're being a young person, you're doing young person things. You're allowed to do that, and you should be doing that.

Leila:
Yeah, definitely. One of the things I really struggled with as a young carer was feeling I was too mature. I was an adult before I was a kid, and so being around friends and just having fun makes me feel like I'm a young adult and I'm doing those things and having-

Rose:
So important.

Leila:
Yeah, definitely.

Rose:
And I think it's important also to know that if any of these challenges or anything raised anything for you, there are lots of support options available, with Carers NSW but also through other partnerships, and I will make sure that they are in the show notes for anyone that needs some support. We've talked a lot so far about a whole bunch of different things. It's been so amazing. What would you say... I mean, you've achieved a lot in your short lifetime so far, and I'm sure there's going to be so much more. We should do a podcast in five years to 10 years’ time of where you are now. But what would you say is your personal achievement that you are most proud of?

Leila:
Obviously, I could talk about some of the work, career-focused kind of achievements or academic achievements, but I think for me, the scariest thing was moving out, like taking that step. To be honest, I didn't think it was going to be possible, and I'm really proud of the fact that I took that risk, even if it was really scary and I didn't know whether it was going to work, how it was going to land, how it'd impact not only my brother, but the rest of my family. But I'm proud of how we kind of went about it and I felt like I was really patient with myself and with the situation and trusted that it will work out and advocating not only for my brother's needs, but my mum's needs and my own needs.

Rose:
Yeah, I think that's important. Advocating for yourself is so important as well.

Leila:
Yeah. And it was so foreign to demand that I needed space for myself, and I think I thought that it was going to be received with a bit of judgment or I was really worried that my family would respond in a way where they would be like, "Oh, well, this is a bit selfish of you." But they were really supportive, really understanding, and yeah, I'm really happy that I took that risk.

Rose:
You're just showing so much empowerment. And to our listeners that may be also thinking about that, there's so much advice I think we can pull from that definitely being… having those open conversations and talking through your support networks and just being able to recognise that your needs are there as well. I guess we're coming towards the end. Would you have one more piece of advice for any listeners who might be a young carer themselves or have a young carer in their life? What would be something to take away? Maybe touching on that conversations about moving out because that could be a thing that a lot of people might be transitioning through now.

Leila:
Yeah. The first thing that came to my mind was make sure you make space for young people to still be young people. That was the most helpful thing that my family and my school and university helped me do. They really helped to remind me to think about myself as a young person, think about what I wanted to do, helped me believe that we could figure it out together. So, I think if you know a young carer, try to help them make space for themselves again, because it's something that happens to most carers that they kind of just... They don't prioritise themselves. And with young people, I think it's even more prevalent.

Rose:
Yeah. In the classroom, in the community, there's always hidden carers. But also the ones that you do know, I think it's important, as you said, to remind them to be young people.

Leila:
Yeah. Help them foster that interest, their interests, and help them take opportunities that come their way and figure out a way to balance it all with all the other things that are going in life. And it can be really difficult, but those opportunities that I was afforded and supported through have really given me the life that I have, and I'm really happy with the life that I have.

Rose:
And the journey's just beginning. It's been such a pleasure chatting to you, Leila, and all the best with all those goals that you have and for the future. I've really enjoyed chatting.

Leila:
Thank you.

Nina:
Thanks so much, Leila and Rose, for your wonderful interview. Leila and Rose grappled with some really interesting points, which I feel is a constant tension of being a young carer. The tension between constantly putting someone else's needs above your own, all while looking after yourself and avoiding burnout. For me, being a young carer is a core part of my identity, whether I like it or not. The role I've taken up in looking after my mother and subsequently my brother has shaped all the other relationships in my life. Without realising it, I can go out of my way to support my friends emotionally, sometimes even financially. I check in with people who are struggling and ensure all these people have supports in place. And having this attitude isn't even a conscious choice. Sometimes I feel like it's just who I am now. Being a carer and supporting others is sometimes in direct conflict of my own needs. Sometimes I imagine my life is a bit like a cheesecake made up of different slices. I have my family life, my social life, my caring life, my work life. I also have my physical health, my relationship, my hobbies… As a carer, it feels like there's always at least two slices that go missing, and often that can be hobbies and physical health. And I feel like self-care is the sprinkle of icing sugar, which often gets left off the cake for young carers.

You can visit the show notes on today's episode to learn more about young carer supports and services, and don't forget to subscribe to YC Bytes to be notified when the next episode airs in a few months’ time.

This episode of YC Bytes was hosted by me, Nina Longfellow. It was written and produced by the Carers NSW Young Carer team. Special thanks to our speakers, Rose and Leila, who contributed to today's episode. The Acknowledgement of Country was recorded by Lua, who you might remember from episode one of this season.

Natalie:
Carers NSW is the peak non-government organisation for carers in New South Wales. We provide information, education and training, research, resources, and a range of carer-specific programs and projects, to support and raise awareness of family and friend carers in the community. For more information, please visit www.carersnsw.org.au or call 02 9280 4744.