YC Bytes
For more information about Carers NSW, please visit www.carersnsw.org.au
YC Bytes
Get to Know John
In this episode, we get to know John. John has been connected with the Carers NSW for over a decade, and has been a strong advocate for young carers for many years. John chats with host Nina about how his caring role has changed from when he started caring at 5 years old to now, how important school was for John and how he started a support group for his peers, the importance of practical support for young carers more broadly and how John’s caring role ultimately shaped his career. John is now 23, lives in Central West NSW and cares for his mother living with a mental illness.
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.
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.
If you are working with young carers in NSW and you would like to arrange an information session for your team/s at work or school, please call 02 9280 4744.
If you would like to be involved in making positive change in your sector and improving young carer awareness on a larger scale, check out the Carers NSW Young Carer Inclusion Network. This initiative brings together a range of like-minded representatives from all sectors working with young people who want to help improve young carer inclusion across NSW. For more information, please visit the Carers NSW website or call 02 9280 4744.
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.
John:
Whenever I reflect back on that eighty-odd thousand stat, I always go, "Well, there's always heaps more out there," but the thing is they're hidden young carers.
Nina:
Welcome to season two of YC Bytes. This podcast series aims to raise awareness of young carers who are children and young people, 25 years and under, who provide care and support for a family member, partner or friend. We believe it's important to shine a light on young carers as they're often not recognised or understood. My name is Nina and I'll be your host for this last episode of the 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.
Nina:
In this episode, we get to know John. John's been a young carer since the age of five. He's now in his 20's, lives in Central West NSW, and cares for his mother. John's been connected with Carers NSW for over a decade and has been a strong advocate for many years. And now, let's hear from John about what he's been up to since first connecting with Carers NSW over 10 years ago.
John, can you tell us a little bit about yourself and who you care for?
John:
My name's John. I'm 23 years old. I'm someone who is sociable, outgoing, care for mum who has mental health issues, and I'm also the young carer rep for my Local Health District's Consumer and Carer Consultancy Committee. I'm also studying my diploma in counselling, which is something that's keeping me very, very busy.
Nina:
We understand that you've been caring for your mum since you were around five. How has your caring role changed over the years as you've grown up?
John:
My family and I, we moved from Sydney to Central West NSW. During that time, there were times when dad needed to travel back and forth for work, so I was doing a lot more caring for mum at a very, very young age. That's where that five or six has come from.
Nina:
And what were some of those responsibilities when you were five or six?
John:
Receiving calls from my primary school.
Nina:
When you were five or six?
John:
Yeah. Yeah. Yeah. Yeah.
Nina:
What were they calling about?
John:
They did it in a nice discreet way. They would call my teacher, the teacher would then let me know that I've got to go to the office and then the office would be like, "Hey, your mum's called. She needs you to go home and support her." Lucky I only lived about a four- or five-minute walk from my primary school, so I was getting a bit of exercise at a very young age.
Nina:
Getting your steps in.
John:
Oh, most definitely. And some of the things that I was doing was being there for mum when she was having a down day. It might be that I might be needing to get mum's medication, or even just be there when she's having a panic attack.
Nina:
That's a lot of responsibility for a young person, especially having to provide that role of emotional support. Did that make you grow up quite fast?
John:
Oh, most definitely. A lot of people that I interact with, mainly adults over the course of my caring life, they have said this saying to me, "you are beyond your years."
Nina:
Yeah, I feel like that's true for a lot of young carers.
John:
Oh, 100%. That is.
Nina:
And what did your caring role look like as you became a teenager and now an adult?
John:
When I got my driver's licence, I was able to drive mum to the hospital, to appointments. But yeah, just doing the household duties, advocating on behalf of mum as well at appointments, and also attending appointments, and just making notes of what medical practitioners or clinicians have said during the appointments and things that need to be followed up. And because, not only myself but also other young carers that I have spoken with or spoken to, we know what the person is capable of at times. There's been times when I've had to step in and say, "Hey, no, I don't think that mum will do this type of thing. Do said task."
Nina:
Yeah, advocating.
John:
Advocating, 100%.
Nina:
You mentioned you're an only child. Are you the primary carer or were you the primary carer for your mum? How much of a role did your dad play in all this?
John:
Me and dad shared the role obviously when I was a lot younger and he was needing to travel back and forth for work because bills need to get paid, et cetera. I was doing a lot more of the caring role. Now that I've gotten a lot older and mum's stable, he's now become a bit more of the carer because they want me to have more independence and be able to do things that other people my age are doing, like traveling, that type of thing without needing to worry about what's going on at home. Because growing up wasn't easy. I did miss out on a lot of things, some activities, spending time with friends.
Nina:
What was it like being a young carer growing up in a regional town and how do you think that that might have differed to someone like me? A carer in a city.
John:
Support can be far and wide. Growing up there was limited support for young carers in Central West NSW. There would be the odd camp maybe once or twice a year, but nothing really formal. You do feel isolated.
Nina:
Did you get any support from the NDIS or were there support services for your mum that in turn benefited you or not really?
John:
Most definitely, because that's one way that I found out that there was a term out there for what I was doing. Through mum's support worker, she did a bit of research and presented it to mum and dad and said, "Hey, know what's going on at home." There's a term out there and there's also an organisation in Sydney that can support John and his caring role.
If it wasn't for mum's support worker, who knows if I would've ever known if there was a term for what I'm doing, otherwise I was and still doing it out of love for mum because she's been there for me when I've needed her and I just feel that it's the right thing to do for mum is to do it to help her out when she needs me.
Nina:
Can you speak to me about some of the challenges that you face growing up as a young carer?
John:
Sometimes there's been a bit of misunderstanding, not only with fellow peers but also with clinicians, because they're seeing such a young person doing adult responsibilities, if you will. There have been times when I've attended appointments and mums outlined, "Hey, this is my son John." And when I've tried to step in to say some things that shunned me off or just listened but didn't listen 100% and gone, "What’s he know? He's only eight, or nine, or 10," whatever the age may have been. Understanding with peers and also understanding with clinicians or medical staff if you will.
Nina:
Why do you think the clinicians, or medical staff, or just people in general do that?
John:
Lack of awareness? I would say about young carers and also there could be personal judgment coming through as well because they may be saying, "Why should a young person be doing this?"
Nina:
How did you cope with school and being a young carer?
John:
For me, school was very positive. I viewed it as respite, time away from my caring role, time for me to interact with other people my age, forget about what's going on at home, focus on schooling. There were times when I may not have completed all the task, assessments, assignments, homework, et cetera. Teachers were very understanding. If I needed to leave school early or have a couple of days off, there was no dramas. And actually, when I was in year 10, in conjunction with the head teacher of, well-being, we created a young carer support group for young carers year 7 to 10. And I still remember to this day, we had it on a Wednesday afternoon and between year 7 to 10 there were about 14 young carers that attended.
Nina:
That's so interesting because I never met a young carer in university. I wasn't a young carer when I was in high school, but I'm pretty sure that my younger brother had never met another young carer. It's so interesting that you even had the language to identify and create this group.
John:
Oh, most definitely.
Nina:
And how did this group come to be?
John:
Me and the head teacher of wellbeing, we were chatting about young carers and she had a big passion for young carers and we were looking at ways to provide connection with other young carers, but also enhance awareness throughout the school. We thought about why not create a... I don't really like using the word support group, but a group.
Nina:
A little collective or something.
John:
Yeah, collective, of young carers. From there, it just grew and grew. We went around, that our names and if we felt comfortable sharing a bit about our caring role, and at the end a lot of the young carers said, "Yeah, I know that person, but I didn't realise that they were also a young carer," and that other person was in their year, and just blossomed from about 14 young carers through to about 30 to 35 young carers between year 7 to 10.
Nina:
It's so interesting because there's somewhere around eighty-three-ish thousand young carers in New South Wales, but that simply can't be accurate, especially if you have a support group of 14 people in just your school. There has to be more young carers.
John:
Oh, 100%. Whenever I reflect back on that eighty-odd thousand stat, I always go, "Well, there's always heaps more out there," but the thing is they're hidden young carers.
Nina:
And moving from high school out into further study or full-time employment, how is that transition?
John:
My young carer role has actually shaped the career path that I've undertook. The first job I had outside of school, I was a carer peer worker and I was the first carer peer worker that organisation had employed.
I still remember doing the interview, so nervous thinking, "Oh, I haven't got this." They want people with a bit more experience or a bit more older. But no, hey, I was in that job for about two years, two and a bit years and thoroughly enjoyed it.
Nina:
Do you like working in this sector?
John:
Oh, 100%. I love working in the mental health sector. It's really rewarding.
Nina:
And would you say that you like being a young carer?
John:
Oh, 100%. I love being a young carer. There's nothing in this world that I would change.
Nina:
And that is so sweet. That's really interesting because we have quite opposite experiences. I'm also a young carer for my mum, but for me, I don't enjoy being a young carer. What about it do you love so much?
John:
The skills that I've been able to achieve in my young carer role.
Nina:
Tell me more about these skills.
John:
Time management, advocacy skills, knowing about the medical system, if you will, and also learning empathy and all these skills have been transferable into my adult life, whether it be for work or for personal.
Nina:
Do you have a personal achievement that you are most proud of?
John:
I actually do, Nina.
Nina:
Tell me more.
John:
Have you heard of the NSW Ambulance Star Award?
Nina:
I have not, but please tell me about it.
John:
The NSW Ambulance Star Award recognises young people who have had the courage to call triple zero in particular for an ambulance. I was the first male recipient in Central West NSW to receive this award. I remember being in year six, just going on a normal school day and I seen mum and dad there with a representative from the paramedics. And then, the next thing I know, my name gets called out and I receive this star award at the assembly and then I was also front page of the local paper the next day.
Nina:
From your NSW Ambulance Star Award to creating your carer support group in your high school, is there a goal that you want to achieve? Do you have any big hopes and dreams? What's next?
John:
I'm a person that goes on day-to-day things. If I did have a goal, it would definitely be continue advocacy and awareness raising for young carers, especially in regional New South Wales.
Nina:
And do you have any advice for young carers who might be listening?
John:
My advice for any young carers out there that are listening is reach out for support, whether it be through Carer Gateway, I've personally accessed carer counselling through Carer Gateway and have found it amazing, and don't be ashamed to tell people about what's going on, and you guide that conversation. If you are opening up and you want to talk about your caring role and you want to do this in a private space, let that person know as well.
Nina:
Do you have advice for someone who has a young carer in their life?
John:
My advice is that, do some research. Find out what's available in your local area. Give the team at Young Carers at Carers NSW or Carer Gateway a call, and don't judge the person for what they're doing. Allow them to tell you as much as they feel comfortable in sharing with you because it isn't easy to open up to someone.
Nina:
I love to jump in here as well and say rather than just saying, "I'm here if you need, I'm here to provide support." Think about practical ways that you can help out in a young person's life and then offer that.
John:
100%.
Nina:
I feel like, look, maybe we've had different experiences, but in my life I get a lot of, "Oh, we're always here. Just let us know if you need anything." But actually having a think about what you can do, it can make a world of difference in a young person's life.
John:
I couldn't agree more. There's been times when the practical side of things have helped me out a lot. I still remember to this day, dad was working. I had come home from school, it was the end of the day and I'm seeing mom go through a panic attack and I reached out to a neighbour to help out and this neighbour said to me, "John, I'll get my husband, because it was a wife that helped out at the time." She said, "I've got something going on tonight, but I'll get my husband to bring over some dinner." And I, like I said to you, "Look, are you sure I can make something up or..." "No, no, no, no, no, no. Bring it over on a plastic plate, et cetera, that you can just chuck away when you're finished." And myself and my family were forever grateful.
Another practical thing that I guess I've found beneficial is that, not sure if it'll be practical or not, but in my head I have found it useful is that friends understanding when I've needed to either leave an event early on or needing to cancel last minute because of what's going on at home.
Nina:
Yeah. And also at least with my friends, I try and say, "All right, we need to book in advance so that I have time to prepare. Let's pick a date and make it happen. Don't message me the day before. Let's pick a date and stick to it."
John:
See, that's why I'm the organiser in our friendship group.
Nina:
Yes, exactly. Well, thanks so much for coming on and letting us chat to you about your extraordinary life.
John:
Thank you for having me, Nina.
Nina:
Last episode, I mentioned data shows there are over 83,000 young carers in New South Wales. And if we take this number and we apply it to schools, it would seem that there's at least one young carer in every classroom in New South Wales. And while not all young carers are the main or primary carer, they still are likely needing extra support, particularly in school. How much are we doing to identify and support these carers? In my opinion, not enough.
A lot of the time people might assume young carers are helping to care for a sibling. But from the Carers NSW 2022 National Carers Survey, we know a lot of young people support a parent like John and myself. For young carers in these situations, there can be really specific challenges which can lead to our own physical and mental health issues, which is something that I feel really needs to be improved for young carers as a group.
YC Bytes is a podcast series developed by Carers NSW, the peak non-government organisation for family and friend carers in New South Wales. For more information, you can check out their website, www.carersnsw.org.au.
This episode was hosted by me, Nina Longfellow, and the Acknowledgement of Country was recorded by Lua, a young carer who is featured in the first episode of this season. Don't forget to check out the show notes to learn more about young carer supports and services. And if you haven't already, be sure to subscribe to YC Bytes.
Special thanks to John for joining us today and a big shout out and thank you to all our guests who have made this such a wonderful season. I hope you've enjoyed getting to know Lua, Leila, Caitlin, John, and international author Rab Ferguson as much as I have. It's been great hearing how caring responsibilities shape one's interests, hobby, career choices, and life. Another big thank you to the incredible young carers who interviewed our podcast guests. It's amazing to have their invaluable perspectives involved in both sides of the conversation.
As we wrap up this season, I want to take a moment to thank you and all of our listeners for their ongoing support. And to all the young carers out there, we want you to know that you are seen, you are appreciated, and you are not alone. Thanks for tuning in.