Audio Transcript
Adrian Plitzco (Host) – 00:00:02: Hello and welcome to Tune in to Care, a podcast exploring the lives of carers. In this season, we shine a light on the diversity of caring communities. From bustling cities to remote outback towns, carers come from all walks of life, and though their challenges and experiences may differ, we hear how they all share the same resilience and dedication to their caring role. Tune in to Care is produced on Aboriginal land across Australia. We acknowledge the Traditional Owners as the Custodians of this land. Tune in to Care is brought to you by Wellways Carer Gateway. Carer Gateway is an Australian Government initiative providing free services and support for carers. My name is Adrian Plitzco.
Carer – 00:01:04: So, like I was a bit shocked how I had to go help him, especially how I was 11 years old. But I got used to it and it happens normally now. My mum asked me, my siblings, like, “maybe you should go help your dad a bit”. So ever since then we’ve been helping him.
Carer – 00:01:23: I’m in year 10. It’s really hard for me to do work and look after my brothers and siblings.
Adrian Plitzco – 00:01:29: Anyone can become a carer overnight, no matter how old or how young you are. For a young carer, the world can be complex and often challenging. In this episode, we peel back the layers of the caregiving experience faced by young individuals, and I’m sure we’ll see the profound impacts this role has on their personal growth, academic life, and overall mental health. Julia and Adam are both in this situation, both are young carers. They will, in a moment, share their experiences and tell us how they became carers at such a young age. And I’m sure again, we will gain some valuable insights into their unique responsibilities. I’ll also ask them what support and services they receive from Wellways Carer Gateway and how much it helps them navigating their caring role. After the conversation with Julia and Adam, I will also speak to two experts about the topic of young carers and what variety of support is available for them.
Adrian Plitzco – 00.02:38: I say hello to Julia and Adam, welcome to the podcast. Julia, I would like to ask you first, can you please tell us how young you are and who you care for?
Julia (Carer) – 00:02:49: I’m Julia and I’m currently 22 years old. The person I’m caring for is diagnosed with severe intellectual disability and autism level three, and she is unable to talk. So, she’s my older sister. Her name is Jenny and yeah, that’s who I care for.
Adrian Plitzco – 00:03:08: Thank you Julia. Adam, what about you? What’s your age and who do you care for?
Adam – (Carer) 00:03:13: Hi, my name is Adam. I’m 17. I, I’m currently still in year 12. Just about to finish my final exams next term. After that I’m going to go to the Air Force and hopefully get a job as a mechanical engineer there, study further there. And I care for my dad. His lower back, the problem with it is, it’s a nerve. Any sort of movement with his back kind of prohibits him from doing daily day-to-day tasks. I just kind of help him whenever he asks for help or like, whenever I see him struggling with anything, I come to his aid.
Adrian Plitzco – 00:03:51: Are you the sole carer for your dad or is there anyone else helping?
Adam (Carer) – 00:03:56: It’s mostly just me that I care for dad, but my brothers also lives with us as well.
Adrian Plitzco – 00:04:01: And why do you think it is important that you are the one who is in this caring role and not someone else, or let’s say some institution or maybe other services. Why do you think it is important that it is you who took on the responsibility?
Adam (Carer) – 00:04:18: I just feel more comfortable knowing that I’m able to take care of my dad rather than someone that I wouldn’t know. I know all his interests, all it his needs, so it makes it easier for him to ask for help as well.
Adrian Plitzco – 00:04:31: Julia, does that sound familiar to you? What makes it so important that you are in that caring role?
Julia (Carer) – 00:04:37: I help with my family as well because it’s my older sister, so I have my younger sister and myself and my mum to take care of her. And with my sister’s diagnosis, she just doesn’t know how to make decisions for herself. So, with Adam’s case, you could take care for an actual adult and an actual person who’s able to feel and speak out. I, on the other hand, is unable to understand her. So, most of her actions are just body language based on attitude and sometimes behaviour. Yeah, she changes a lot, and I have to adapt to them all the time. Yeah, and I have to try to do the guessing game. What does she want, what does she love? A lot of that.
Adrian Plitzco – 00:05:19: What are the challenges in your caring role, Julia? What are you confronted with?
Julia (Carer) – 00:05:25: The difficulties about it is like unable to predict what her state is, her mood is. So, most of the time when she comes home and she feels a little angry, she start moving things around or she just came home with something broken. Adapting to that and understanding what she’s going through, there’s a lot going on. So sometimes like frustration and angry and worried. It’s just like waiting for her to calm down and be prepared.
Adrian Plitzco – 00:05:54: Adam, can I say that the nature of your caring role is rather a physical one? Is that right or are there more challenges to that?
Adam (Carer) 00:06:02: I’d say my challenges is not being able to do enough for my dad because in that sense I still have to go to school. I still have to get my education and the problem is, while I’m at school, no one’s at home caring for my dad. I’m always, like, constantly worried whether he’s gotten out of bed yet, if he’s all right going down the stairs or going up the stairs, I just message him every now and then to make sure he’s all right if he, like, needs anything. He took me for my P’s test, and I failed. It kind of just broke me down a little bit because it’s like I felt like that I failed him pretty much.
Adrian Plitzco – 00:06:42: I think that’s an important part too, when you are in the role of a young carer, that you have people around you who you actually can share your worries with, but it’s not always that easy. And Adam, you are still going to school. Do you have friends in school who you can talk to about your caring role?
Adam (Carer) – 00:07:01: Yeah, I have some really close friends. I talk to them how I look after my dad and they’re very supportive of it.
Julia (Carer) – 00:07:07: For me, on the other hand, it’s a bit difficult because they don’t know the severity of it and they couldn’t relate to it.
Adrian Plitzco – 00:07:14: To balance studying and school with home responsibilities, I’m sure is not easy. How do you cope with that, Julia? How do you get things done?
Julia (Carer) – 00:07:25: My sister, she is my priority, and I have to stay up whenever I have to study. I study better without distractions. I have to be flexible. I have to adjust carefully and also seek help for studying as well.
Adam (Carer) – 00:07:41: I have to stay up most of the time, but the, the way I try to do it is I’ll just be constantly near my dad.
Adrian Plitzco – 00:07:49: Looking after your older sister, Julia, you have been a carer since you literally were born or rather since you started to walk and talk and you grew into that role of a carer from a very, very young age. Adam, is it, I think for you it’s quite different, isn’t it? Did you have time to adjust to your role as a carer?
Adam (Carer) – 00:08:12: It mostly just happened all of a sudden because the thing was when my parents were still together, my mother would look after my dad. That way I could still, you know, be a kid and all that, but all of a sudden when my parents split, my dad had to sit me down and talk to me and say, I need your help. And that to me it was hard to see because, you know, seeing your dad in that situation asking you for help when, you know, you could barely help yourself, I just had to suck it up and deal with it. I enjoy looking after my dad, we get along very well together.
Julia (Carer) – 00:08:48: When I was little, I didn’t find it out of the ordinary at all, just find it normal. But as I grow up and I see that some of my interests, some of my views are different with others and I couldn’t speak about my caring role because no one can relate to it, definitely affected me when it comes to connection and sharing and also shaped me to who I am as well. And I noticed that because I’m caring for someone and I always have to be there for my sister and I’m very connected to my family, therefore my Vietnamese is so good, but my English is very behind. So, when it comes to studying it, I realised that the delay of, like, understanding, learning, it also impacted me because I have to like learn English properly slowly as well. Yeah, connecting with friends is very difficult for me. But yeah, I adapt to it. I learned to adapt to accept it and be okay with it. So clearly responsibility is number one already. So, I didn’t have a chance to discover my interests at all and I didn’t have the time to explore my strengths, my hobbies. Other people are able to make decisions in their life, go shopping whenever they feel like it or leave the house whenever they feel like it. We can’t do that.
Adam (Carer) – 00:10:07: Well, compared to my friends, it’s more if it fits in my schedule to look after my dad. So, if my friends message me out of the blue and say, “hey Adam, let’s go to the park for a bit”. I have to decline because I’m looking after my dad most of the time. I can see how sometimes that irritates them because I’m just not constantly free all the time. My dad, he’s a very understanding man. He’ll say it’s all fine with me to go out and hang out with my friends.
Julia (Carer) – 00:10:41: Sometimes, it’s a sense of guilt leaving them alone too.
Adrian Plitzco – 00:10:44: How did you both find out about Wellways Carer Gateway?
Adam (Carer) – 00:10:48: I believe it was through my dad because he saw how much I was kind of struggling balancing life and looking after him. He went and did his research and said that there are people out there the same position as I am, and he said I could get help for my struggles. We eventually stumbled upon the Carer Gateway, and they were super supportive of my needs and struggles and ever since then it’s been a lot easier to look after my dad knowing there’s support out there if I need it.
Julia (Carer) – 00:11:26: Because I am active in a lot of communities, aged care, disability and also, I hear of so many organisations from time to time and I just apply to majority of them and see how things go. I just apply to whatever’s current and see what help I could receive. So, counselling, I have access to peer support, would be at the end of this year because I’m in job search, I’m not sure when I’m going to be free. I’ll have to let them know when I’m free for it. But yeah, I’m in the list to take the services.
Adam (Carer) – 00:12:00: I have access to coaching for school and counselling if I need it. Pretty sure I also have access to therapy in case, like, if it ever gets overwhelming and I just need someone to talk to. Definitely, it’s a whole lot better than it was about, like, six or seven months ago before I got that initial support. Ever since then it’s a lot more easier now mentally and physically.
Julia (Carer) – 00:12:30: So, with the services that I have it definitely has become better, especially with my job searching journey. So, you know that the job market is just too competitive right now and definitely when talking to counselling they suggest and they change my viewpoints a lot, perspective and views of life in general and it makes me feel better and it makes me understand the other side of job searching.
Adrian Plitzco – 00:12:56: If you now see someone or hear of someone who’s a carer like you but is not aware of it, what advice would you give that person?
Julia (Carer) – 00:13:05: Just be patient, open-mindedness.
Adam (Carer) – 00:13:07: You know, it’s, it’s alright to be upset and it’s okay to feel that way, but there are people out there that will love you regardless, you know, whether you, like, struggle, because people would rather you open up to them and talk about how you feel than you keeping it bottled up and you know, eventually that eating away at you.
Julia (Carer) – 00:13:30: But yeah, just share and the more awareness people are informed of, the more that society won’t be judged or they be viewed as ignorant because they don’t know, it’s just that they don’t know or they never experienced it. So, for anyone who’s new to this, it’s just the acceptance first of all, accept the situation and be open about it and adapt to it. Now what are we going to do? What now? How are we going to move on from then on? And for services, just speak the truth. They’re there to help you, they’re open to helping you, they’re there to help you. So, just be honest.
Adrian Plitzco – 00:14:20: That was Julia, 22 years old and Adam 17, both young carers providing valuable insights into their unique responsibilities as young carers, while they’re also stressing the critical role of support networks and services. No two carers are the same. You might by now know the saying, but we can’t repeat it often enough. Also worth mentioning again, is that Wellways Carer Gateway offers tailored services to meet the unique needs of carers, even more so by partnering with other specialist organisations such as Little Dreamers who support young people aged 4 to 25, young people who provide care for a family member. Richard Colquhoun serves as a counsellor and intake program coordinator at Little Dreamers. He’s here with us, together with Lou Faulkner, General Manager of Carer Gateway Services at Wellways. And this question, Richard, is burning in my mind, is it common with young people or young carers like Julia and Adam that they are faced with the difficulty in balancing caregiving with personal and academic responsibilities? Is that common?
Richard Colquhoun – 00:15:35: Yeah, definitely. I would say that’s one of the things that gets identified a lot through our conversations with young carers and their parents is their stress and worry that they carry at school. And then also on the other side of that is the school’s understanding of what a young carer is. So being able to support them while they’re at school as well with some of the challenges that they might be going through.
Adrian Plitzco – 00:16:02: Lou, what would you like to say?
Louise Faulkner – 00:16:04: I guess the first thing I just wanted to say was how impressed I was with how mature and articulate these two young people were and they just spoke with such love for the people that they care for. I wholeheartedly agree with young people. The majority of young people who are in school who come through this program do require just a little bit more support to get through their schooling. With the Carer Gateway, there are coaching workshops that, you know, young people are constantly asking for and it’s usually around the helping to study, helping to plan and manage time. You also have to remain flexible as well because the caring role is, it’s a real journey and it’s quite unpredictable. So, you know, just supporting young people to have the flexibility they need to do their studies as well.
Richard Colquhoun – 00:16:46: The caring role changes and evolves over periods of time. And what Adam was saying, his was very sudden, so his life sort of changed very quickly. So, he might’ve been in a specific routine and doing well and being comfortable in that routine. And then suddenly, you know, dad’s injury impacted him so much that then Adam had to take on this almost parental role of caring for his dad and then taking on that stress and worry about his dad as well. And Julia had a little bit more time to sort of embed her caring role within her normal routines because she’d been living with that for quite a long period of time. Not saying that her challenges were not great, but you know, she had a lot more time to balance or, or try and find some balance in her caring role and, and other parts of her life.
Adrian Plitzco – 00:17:42: We heard that loud and clearly from both of them, Julia and Adam, that they both acknowledged the profound personal growth and maturity that developed through their caregiving roles. Do you hear and see that in other young carers too?
Richard Colquhoun – 00:17:56: Oh, definitely. I often hear from parents when I talk to parents, “oh they’re much older than they look or they behave much older than they look”, you know, with a caring role there, there’s definitely that sense of they need to be more adultified quicker because they’re learning about concepts that perhaps they hadn’t or wouldn’t be exposed to if they hadn’t been in a caring role. So, they’re hearing about medical terminology, they’re going through different services and processes and therapies and hospital visits and whatever their caring role might lead them to, all of these types of experiences, knowledge is power sort of thing. And they’re getting a whole heap of this knowledge at a quicker rate than a lot of other kids. So yeah, it’s very common for young carers to be more mature.
Louise Faulkner – 00:18:46: I think as well, it’s really important to provide or be able to support young carers with having a bit of a balance when and if possible, in their situation. So Wellways Carer Gateway, they work really closely with Little Dreamers who are experts in working with young people just to provide those opportunities, absolutely for the really practical supports, but also just supporting young people to be young and have fun and have an opportunity to connect with others who are maybe in a similar situation. And I would hazard a guess and say that I’m pretty sure after some of the camps and things that young people go on, they probably maintain those friendships well past the camp.
Richard Colquhoun – 00:19:26: Yeah, we get a lot, cause we do school holiday programs, camps and just general connection one, one-off events and things. Young carers will connect on those and then they’ll see each other again maybe online or in person. It’ll be like, “hey, I remember you”. And there’s that sense of relief when a young carer can be with peers and they don’t have to explain themselves, they don’t have to explain that they’re a carer and they’ve got a sibling or a parent that they provide support for.
Adrian Plitzco – 00:19:55: The feeling of guilt is here present as well, thinking, not doing enough.
Louise Faulkner – 00:20:00: Yeah, I was just reflecting on Adam just saying, you know, he has to, you know, because he goes to school, he doesn’t feel like he does enough for his dad and then I hear Julia say, you know, that she feels a bit guilty when she goes out because her sister might be left alone or with someone else. So, she feels that level of responsibility there. I think it’s a real feeling.
Richard Colquhoun – 00:20:20: Definitely, and definitely a common one depending on their caring situation and their involvement in their care recipient’s care. But definitely that level of responsibility, the stress and worry that they carry when they’re not with their care recipient, just for an example, like, camps is one of those things that being away for three days from their care recipient can be quite distressing for young carers because their internal responsibility mechanisms are saying, how are they going to survive without me? You know, who’s going to get them what they need and, and who’s going to give them that emotional support? It’s constantly, whether it’s conscious or not, it’s still going through their heads and it becomes a real crippler sometimes because, you know, we’ve had program that has been an overnight camp or a couple of nights and, and the young carer has had to go home because their stress and anxiety and worry has become too much for them to be away at that particular time.
Louise Faulkner – 00:21:27: And Julia alluded a little bit as well, didn’t she, to the, not that she used the word stigma, but she kind of alluded to the fact that there might be a stigma around being a young carer and not being able to, you know, engage with other people the same way, you know, maybe other community members do, but it also didn’t stop her from wanting to do it. It’s absolutely her priority. So yes, I think that, you know, for programs like the Carer Gateway and Little Dreamers, it’s about reducing that stigma and just normalising everyone’s situation and story.
Adrian Plitzco – 00:21:56: She hasn’t had time yet to develop her interests and her skills. So would you support that?
Louise Faulkner – 00:22:03: Yeah, absolutely. Absolutely and I did hear her say there as well that she’s looking for work or maybe trying to decide what she wants to do for work and that’s also something the Carer Gateway can absolutely support with as well.
Richard Colquhoun – 00:22:15: Yeah, and I think that’s a really good thing to sort of highlight as well that, you know, young carers are usually in their caring role and, and don’t see how to approach having a social life or, or trying to look for work and things like that. So, services like Little Dreamers, services like Carer Gateway can sort of help put things into perspective and help them see things in a different light and create some of those opportunities to have time for themselves. And then also I think when they’re engaging with services just for them, you know, you can engage in many different services that are for other challenges in their lives, but when it’s specifically about them and their caring role, it becomes more meaningful to them as well because it’s not about the care recipient, it’s about them and helping them to find ways to do what they want to do, sort of shining a light on, it is okay. So having that permission to not feel stress and worry that you are taking time for yourself because I hear many a time if you are not well, then you can’t be your best for your care recipient as well. So just allowing carers in general, young carers definitely that it’s okay to have that time for yourself and feel that you’ve got a connection to something other than your caring role and not that be your identity as well.
Adrian Plitzco – 00:23:52: So we heard Julia and Adam, they said that they heard of Wellways Carer Gateway through other channels, family members. Do young carers approach you directly to reach out for your services? Do you come across that as well?
Richard Colquhoun – 00:24:06: I think it depends on the age. Definitely Julia, she was seeking support and that’s amazing. You know, not everybody is able to identify that they need help and then go and seek it for themselves. So, you know, that’s awesome that she was doing that and in Adam’s situation, dad initiated that connection, which again, you know, as a parent, there’s a huge amount of guilt on the parent as well, feeling like they haven’t done enough for the carers in their family. Like their focus is generally on the care recipient with the high needs or the needs and they feel a tremendous amount of guilt and are looking for support specifically for the children in the family that are providing that extra support. So with seeking support, generally when they’re sort of above 17, 18, they’re sort of seeking it for themselves under that it’s generally either a school, a parent or another service that is working with the family or if the young person is working currently in some sort of a therapeutic situation and they know about Carer Gateway or Little Dreamers, then they’ll refer them through.
Richard Colquhoun – 00:25:28: So young people don’t necessarily go, “oh, I need support and I need to go and reach out to these organisations”. That sort of comes back to the parent or the caregiver. It doesn’t necessarily have to be a parent. We have many situations where it’s a grandparent where it’s an aunty or a family member that has seen they’re in a caring role and wants to find them some extra supports as well.
Louise Faulkner – 00:25:52: Yeah and we also do quite a bit of work in the schools and that has been off the back of young carers who are of school age just being able to, you know, commit to school, but really when it comes to three o’clock, they need to head home and they’ve quite often got other responsibilities and duties. So, a lot of the kind of the education piece and the workshops and the peer support will run those in school hours, so they have the opportunity to attend. And it’s also been incredibly interesting over the last couple of years engaging with school counsellors and principals and teachers and talking about the caring role and young carers and how that could impact on young carers. And I really, really hope that that supports young carers in a school space when people have a greater understanding of what might be going on for them outside of that.
Richard Colquhoun – 00:26:37: Yeah, educating schools on just the unique circumstances of a young carer has definitely been a journey. Not every school gets it, but there’s definitely so many schools out there that are so supportive and when we approach them to, to put a peer support in, they’re like, “yes, yes, please come in”, because they know how much a benefit connection is and just being with other young people. So, you know, we do it in a school so they’ve, they’ve seen these other people in their school but didn’t know that they were young carers. So, we are bringing them together for that commonality and there’s like, “oh, I didn’t know you were a young carer, we’ve got something in common now”. And you know, that creates other circles of friends and puts them on their journey of support as well.
Adrian Plitzco – 00:27:23: At what age are you not a young carer anymore?
Richard Colquhoun – 00:27:26: 25 is sort of like the, and that’s a really interesting question because it, just because you’re not a young carer anymore doesn’t mean you’re not a carer. So, I think it just looks differently. The support looks different for somebody that is say, so we, we can register young carers from 4, but the support that we can provide for a 4-year-old is a little bit lower than say a 6 or a 7-year-old, but up until 25 you can sort of access young carer type supports. Once you sort of hit that sort of age, your needs change. So, it’s a different focus on what type of supports you get because that age from sort of 18 to 25 is really focused on sort of the education needs and then also jobs or other, practical type things that early adolescence or early adulthood, sorry. If you don’t have a parent that can help support you through that, you know, coaching or counselling can sort of help put things in a perspective, put you on the right path, put you on a plan of how to achieve certain things they identify that they want, but they just don’t have the skills to get themselves there.
Adrian Plitzco – 00:28:45: Richard Colquhoun, Counselling and Intake Programs at Little Dreamers, thank you for being with us. And another big thank you to Lou Faulkner, General Manager of Carer Gateway Services at Wellways.
Richard Colquhoun – 00:28:59: Thank you for having us.
Adrian Plitzco – 00:29:06: For an in-depth understanding and more enriching conversations about caregiving, listen to the next episode of Tune in to Care – No two carers are the same, when we delve into the personal stories of two dedicated carers, faced by the challenges of living in a rural and regional area where access to services is limited. Tune in to Care is a podcast supported by Carer Gateway, an Australian Government initiative. And if you are a carer in need of support, call Wellways Carer Gateway on 1800 422 737 and make sure you don’t miss out on hearing more incredible carer stories. Subscribe to the podcast on your favourite podcast platform or streaming service. My name is Adrian Plitzco, thank you for listening and I’m looking forward to meeting you again in the next episode.