Transcript
Adrian: Hello and welcome to Tune in to care, a podcast that takes us on caring journeys of five different people who care for a loved one, people who didn’t know they are an unpaid carer and who have only found out later that there is support out there for them. Free and easily accessible. 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 in Australian government initiative providing free services and support for carers. And my name is Adrian Pritzco. So, you are a carer. But what next? Has your perception of yourself as a carer changed, and if yes, how? These are the questions we are going to ask Lena, Mary, George, Maya, and Luna in this episode who share their stories of caring for their family members and the challenges they face. Before we begin, let’s recall who we are listening to.
Lena: My name is Lena. I am originally from Vietnam, and then I sponsored my father over, that’s who I care for at the moment.
Mary: My name is Mary. I’ve been a carer for almost 30 years. I’m caring for my son.
George: Hi George. And I’m looking after my son. He has got autism and he’s now 22.
Maya: My name is Maya, I’m from Sydney. I care for my dad.
Luna: I’m Luna. I am a carer for my son.
Adrian: I will also later in this episode talk to Georgie Sawyer. She’s an in-person, peer facilitator at Wellways Carer Gateway, and was on a caring journey herself at a very young age.
Georgie: While I was caring for my loved ones that I kept putting off my own needs, my own self-care.
Adrian: As we heard in the previous episode, it took Lena, Mary, George Maya, and Luna some time to realise that they are more than a mother, father, or daughter. They are on top of it, unpaid carers. This realisation did not come easy to them. Maya, the 13-year-old teenager, or Luna, who looks after their autistic son, went through some kind of struggle in the beginning. Struggle is actually an understatement. It came literally as a shock to them.
Maya: 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.
Luna: I didn’t have any experience with any people with disabilities or anything like that before I had my son. I didn’t even have much experience with, you know, looking after children. So it was all very, it’s kind of like shell shock, you know? And I found that through the process of realising how much support he was going to need, I really had to adjust my, my goals and my aspirations because I realised, you know, like what kind of workplace is going to hire someone who needs to take time out for therapy four times a week? You know? So it, it really altered my, my perception of myself and the way that I felt like I could go forward in my life.
Adrian: A truly life changing moment for both Maya and Luna. Lena and Mary, on the other hand, didn’t quite experience a life changing ‘aha’ moment for them. It was more subtle and there was no change at first. In Lena’s case, it was when she was trying to register her father for home care package, that she was made aware that she’s indeed a carer and can receive support.
Lena: Until I spoke to a lady from ACAT when I was trying to apply for a home care package for my dad to get help for him with the showering, they told me to call Carer Gateway. And at that point I didn’t even know what it was. And I asked her, I go, what is Carer Gateway? And she said, trust me, call them. You’re on your own helping your dad. This is to help you in case he, you needed a break and they’re there to help you, whatever it may be, just give them a call.
Adrian: So for Lena it was almost an accident that she stumbled across the information that Carer Gateway exists. And for Mary who cared for her son together with her husband, it was a tragic loss of her caring partner that made her realise that she needs long-term support.
Mary: My husband used to help me with my son, but he died. He died in a car accident. And I went like, I said, what I’m going to do, but I have to keep going, you know, God, give me strength and be strong to look after him. And very sad journey. Very sad. You feel lonely, you feel, you know, mental, you know, you don’t sleep enough. You think, I used to wake up two, three o’clock and thinking, oh, my son’s sick. What should I do now? But I, you can’t do much about it. And the saddest thing, you, you, you lose all your friend. Yeah, I lost all my friend, even members of my family, they can’t come to my house unless they call me. Is he all right? Can we come, can we bring the kids? He was very violent and especially towards me.
Adrian: Although similar Mary’s and Lena’s caring stories are as individual as they are, but what is it like being a carer for a loved one when you have cared for other people most of your life in a professional capacity? This is exactly the situation George found himself in, a trained nurse who had to start caring for his son when he was diagnosed with autism.
George: In my nursing, I’ve, I’ve, I’ve had to deal with a lot of, I’ve, I’ve worked emergency, I’m an orthopaedic nurse, I’ve done a lot of autopsies and stuff so I’ve, I’ve kind of like, it’s, things are, some of it are not really new sort of thing to me because I’ve had to deal with them in my workplace to try and calm people down, especially those that have been on drugs and stuff. But I’ve never, I’ve, I’ve never, I’ve kind of never really sat down and given myself time to, to even think about it. It’s, it’s like when I was doing a lot of autopsies and people would come to me ’cause a lot of the autopsies done were tragic. Some of them were done, were really tragic. People would come up to me and said at the hospital, does, have you had any counselling? No, I haven’t. So I’ve, I’ve kind of been like that right through my nursing and everything, you know, so it’s, it’s just one of those things I’ve just probably been carried on my shoulders and never thought anything about it. And now as I’m getting older, I’m still, I’m still pretty energetic and that sort of stuff, but there are things I do and I just, it’s, I, I’ve, I’ve really haven’t worried about, I mean, say things that probably people, other people may worry about, which I, I probably don’t let them worry me. I probably should, but I don’t to have a bit of peace of mind. But it’s just one of those things I’ve just, it’s, it’s like a, a normal day, a normal day sort of thing.
Adrian: You are listening to Tune in to care, a podcast that takes us on caring journeys of five different people who care for a loved one. We are asking in this episode how we changed their perception of themselves after realising that they are a carer. We just heard George summarising his challenging work life, dealing with dead bodies as just a normal day, disregarding the potential trauma it might have inflicted on him. These were his own words and in some way it also reflects how he sees himself on his caring journey within his family.
George: To be honest, I really haven’t sat down and, and and just said, look, hey, what have I done? You know.
Adrian: In stark contrast to George young, carer, Maya had a revelation, so to speak. Caring for her father made her aware how much she enjoys helping other people, even strangers.
Maya: It changed me to go help people and mainly my dad. Before I really didn’t care about helping people and I would usually just do boring things ’cause that’s how I was. But ever since then, I’ve been starting to care more about like where people live and things like that, maybe donate a bit of money when you see someone homeless or something like that, even if it’s like $3, $2 or $1, it would help them. So anything would’ve helped. Sometimes I just give like $2, $1, not something really big. But yeah. ’cause even if you can’t help the whole world, you can help at least two or three people when you see someone,
Adrian: If you can’t help the whole world, you can help at least two or three people. I just had to repeat these words coming out of a teenager’s mouth, Maya, her name is at that point, she had just turned 13. Loss of identity, change of priorities, re-evaluation of life goals, trying to find the things you can do and not focusing on the things you can’t do. That was on to some extent still is Luna’s everyday struggle being a carer.
Luna: I guess I, I kind of, I kind of lost myself a little bit in my caring role. I, I stopped doing the things that kind of brought me joy because I just, I didn’t have the time or the energy. I didn’t have the support, so I couldn’t, you know, just take a day to myself because I was constantly having to, you know, be available in case he needed to come home from school or in case one of his therapies was in the middle of the day. So it was, there was definitely like a loss of identity and that’s something that I am, I’m actually still working on today, four years later through my own therapies. It was a very, very scary process knowing how strong I was going to have to be, knowing how my son was going to need me to be his advocate and help people to understand him. It’s a big task. It is an absolutely massive task and yeah, it kind of, it changes your priorities. Definitely. So I was, I was very keen initially when he was very young to get back into work and, you know, further my studies and gain a really meaningful career. I was hoping to go into the, the beauty industry and I, I started that process when he was young. I, I got some training through TAFE and when things started getting really tough for him and for me, it just, like, all of that kind of fell away and I had to put all that on hold and go, well, hey, I need to actually re-evaluate my goals because like, this is not going to be achievable with the kind of life that I now have and the needs of my son. I, I needed to re-evaluate those goals and see if I could find something else that would fit with his needs as well as my own. And that was, that was quite sad for me ’cause I was very excited to get into working and be engaging with people and helping people in any way I could. And so it’s, it was all about adjusting those expectations for both myself, my future, and my son and his future. And trying to remain hopeful and positive through that process. That was quite difficult. Trying not to focus on all the things we couldn’t do and trying to find the things that we could do was, was really important. You know, I I myself, I’m, I have a ADHD and autism, so I am quite a driven person and excited about my new ideas and stuff like that. And it’s just, yeah, I’ve got to, I’ve got to keep things realistic. You know, you can be, you can be as optimistic and hope for things to work out according to plan as much as you want, but unfortunately life doesn’t always turn out like that. And so yeah, it’s, it’s a very much ongoing process for me, trying to find the balance between doing what I am passionate about and what makes me feel excited and also being able to be accessible for my son to provide him the support that he needs. It’s, it’s a, a delicate dance, a very delicate dance. And it’s one that a lot of people in my position really struggle with, especially if they don’t have like family support and stuff like that. It makes it so difficult.
Adrian: It is time now to say hello to Georgie Sawyer, the in-person peer facilitator at Wellways Carer Gateway. Welcome to the podcast, Georgie.
Georgie: G’day, Adrian. Thank you so much for having me.
Adrian: You heard Luna, Maya, Mary, George, and Luna sharing their experiences to answer the question how they saw themselves in their role as a carer once they realised that they actually are one for Maya and Luna, it was a life changing moment. The realisation came as a shock to them. Maya even had a surprising and previously unknown fact that has been disclosed to her. Caring for her father made her aware of the needs of other people. And ever since she cares more about under what circumstances other people live like homeless people and helps them out in her own words with a bit of money. And Luna, we just heard, spoke of loss of identity, changing priorities, re-evaluating the goals in life and trying to find the things you can do and not focusing on the things you can’t do. And a more pragmatic approach we could sense coming from Lena, Mary, and George who just continued with their caring chores. And George, he sums it up. And I can say he speaks probably for the three of them as just like a normal day. What do you make of it, Georgie?
Georgie: Everyone’s experiences are very unique. We a lot of the time don’t ever put a label on what we do. We never ask the why or how did we get there. It’s an evolutionary organic role that sometimes for some, it’s so different too, I should say, because some people, you know, you might have a loved one who was in a car accident and all of a sudden have has become a paraplegic. So that series of events then leads to a person becoming a carer instantaneously. Whereas it could be a young carer who from a very young age like Maya, who from a young age has actually evolved and grown caring for her loved ones. So it’s about understanding that having that label for some people can be sometimes quite shocking when you come to the realisation because you use that as a reflective tool. So just the word carer or unpaid carer comes with a, sometimes a little bit of a heaviness. Or for example, I actually thought I wasn’t a carer because I thought carers were only people who supported other humans who had a disability and cared for them 24 hours, seven days a week. So I thought to myself, well no, I don’t actually think that’s me. And then when I spoke with other young carers, I could really hear, it was like I went back in time. You can actually hear the, the common thought processes that happen. Like in the morning when you’re getting ready for school, you are actually checking in with your parent, you are checking they’re okay, you are doing a little bit of an emotional checklist. Have you got everything you need while they’re also doing the checklist for you? And when I’m at school, I’m thinking about them all the time. Are they okay, how did they go at that appointment? Oh, I’m going to go to that appointment with them in the afternoon. So sometimes it can be a little bit tricky to have that label, but sometimes what I’m hearing from people in our caring community is, is it’s that label, that umbrella term that enables us to reflect on the lived experience and the caring road we’ve travelled so far to be able to see that we are actually really valuable in our own right and that we actually have to take care of ourselves first so that we can keep caring for others. Otherwise, we just think it’s just another day. And so we might prioritise ourselves last, I know I did and it led to my carer burnout. So sometimes for some people coming upon a label can be beneficial and sometimes obviously we’ve experienced it can be quite difficult as well.
Adrian: Right. That’s an interesting point. You just said burnout, carer burnout. What does it mean?
Georgie: Yeah, so carer burnout is very, real for me it’s where personally, I just felt so overwhelmed. Like I was juggling so many balls in the air while I was caring for my loved ones that I kept putting off my own needs, my own self-care. And unfortunately, my, my body shut down. I had a lot of physical health problems that doctors couldn’t work out why. And then it led to a series of events since I was quite young, I myself have, have been challenged with depression and anxiety most of my life. And if I were to correlate that with my, my caring role, they sort of sit side by side. So it’s, it’s where, carer burnout is where I just didn’t have the support, the support that I needed to help myself and put my own oxygen mask on first so that I could keep caring for the ones I loved. Instead, I just kept going and going until the wheels fell off and it just never served me.
Adrian: I would like to go back to the term label, the carer label you mentioned, you said when you start thinking about your role as a carer, you put a label on yourself and it could put a lot of pressure on you. That label is actually an additional burden you have to carry to become aware of being a carer actually makes your life even harder, doesn’t it? Let’s look at George. His approach is very pragmatic. He was a nurse all his life and he did not question his role. He witnessed a lot of traumatic incidents or events and he just lived through them without any counselling. Nobody ever asked him, how are you? And you can argue as a trained nurse, you are given the tools to deal with it, but everybody else who is not in possession of these tools would be shellshocked once they are placed in a role as a carer, wouldn’t they?
Georgie: A couple of times I reached out to services like Kids Helpline and even Relationships Australia Lifeline. I reached out as a young person because yeah, life was getting quite challenging because what happens is, is we all are doing the best with what we have. But if I look at the analogy, like if I’ve got too many tabs open, like on a computer, then the feeling of overwhelm. So my normal, I didn’t know this, but as a young person, I had a very small window of tolerance and I never put enough thought or time or been given the tools to develop my own resilience toolkit, my mental health toolkit. So I could go into it and go, oh, okay, this is what I’m going to do to give myself a little bit more of a window so that I can have a, a breath, take a breath from this moment, and then I can keep going. But what happens is, is as carers, people think that when you’re a carer, you are just doing that. From my experience, it’s a complete myth. We are still juggling all these other hats that we wear on top of being a carer. And for me, my caring role was mainly activated when my family members were in an acute period of, of their own health challenge. So what happens is, is that my loved one who, who’s going through their own state of overwhelm, I was then not capable, I didn’t have the, the tools to enable myself to help them whilst also feeding and nourishing myself. And so what happens is, is that’s when, yeah, I, I don’t actually think I, I think I went through, sorry, carer burnout many times because of the fact that I just, from a young person, I just wasn’t shown or given the tools. And if I were to be really honest, a lot of my elders were never given the tools or shown what to do. We sort of are constantly perpetuating this, just keep going, just keep going, you know, I’ve just got to get this done. And if you have a totem pole of importance, for some reason we are putting ourselves last when in natural fact, now I’m much older and I look back and I think, wow, if I’d had all the tools in my toolkit back then, I wonder what my mental health trajectory would be. I actually, I think about that sometimes. So that’s why sharing my story with other people about my own mental health journey is really important to me because I, I want to break down the stigma, the shame, all of that, that comes with the challenges of just being a carer.
Adrian: Well, we hope that with our podcast we do make unpaid carers aware of the fact that they actually are a carer. I’m concerned now that we are putting a label on them, which makes their lives even harder. Correct me if I’m wrong, do you address that in your peer groups at Wellways?
Georgie: When carers come to our IPPS groups, they’ve already gone and contacted the 1800 Carer Gateway services number. So it’s usually our intake service team who guide the conversation in a beautiful, safe way so that they can better understand where their journey, how it has led to this point, and how they have those commonality threads. By the time they’re with us in the actual groups, it is, I guess we don’t, we are not focusing so much on whether you are a carer or that imposter syndrome of I’m not a carer. It’s more about sharing that peer lived experience of what their journey has looked like and felt like for them. And then as we’re all sharing story, it’s like our tribe gathers in that space and all of a sudden the connections begin to resonate. And it’s like you have this amazing and very powerful ‘aha’ moment where for the first time you are hearing people describe what you’ve lived through. And it may not be exactly the same, but those common threads are so strong that for the first time, what we hear people say and what I’ve experienced in my own support group is that you don’t feel alone anymore. You don’t feel isolated. You don’t feel like the whole world’s on your shoulders. Or sometimes I used to say to myself, it’s in my head, I, I need to suck it up. I need to keep going. I shouldn’t be like this. My parents deserve this care and I need to not feel this way about the situation that I’m in. I need to just pull my socks up. So I sort of was very hard on myself, but when I’m in this peer space, it’s like I’m in a space of compassion where we can share those moments and there’s those experiences without the fear of judgment. And we can also be able to put a mirror up for each other to be able to see and notice that through the adversity we’ve actually come out the other end. But for some of us, if we haven’t and we keep feeling that that strong challenge and that strong feel of overwhelm, we can sit by their side in a space of compassion as they journey through it. And it’s my job as a peer facilitator to also support them in being able to access our other course services. For example, like our counselling and our in-person peer coach coaching as well.
Adrian: Support or the lack thereof is our topic in the upcoming episode of Tune in to Care where we will hear if and what kind of support our carers received before they contacted Wellways Carer Gateway. Some like Lena initially have asked family or friends for help or support, and for some of them it was in vain.
Lena: Well, my friends are like my age, but they don’t know my dad. So not really any kind of support there to help with my dad, everything, all the paperwork, cleaning his house, that’s all me.
Adrian: Lena’s story, one of many that we will continue to follow in our upcoming episode. Tune in to care is supported by Carer Gateway and Australian Government Initiative.
Georgie: And if you can’t wait to find out more about receiving free support as a carer for yourself or for a friend, why not give my colleagues at Carer Gateway a call? Call Australia wide. Simply dial 1800 422 737.
Adrian: Make sure you don’t miss out on all the other stories. Be part of this journey. Subscribe to the podcast on your favourite podcast platform or streaming service. Thank you Georgie Sawyer, and thank you all for listening. I am Adrian Plitzco. Goodbye until next time.
Note: Transcripts are generated automatically by AI and corrected manually.