Episode 1

Transcript

Adrian 00:00:04 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 an Australian government initiative providing free services and support for carers. And my name is Adrian Plitzco.

Adrian 00:00:58 Are you a carer? Think about it. You might never have asked yourself that question because it is a given that you care for your husband, your daughter or mother. If they have a disability, a medical condition, live with mental illness, or a frail due to age, it is a given because it is a loved one. Plus, you have no choice. So are you more than a mother, father, daughter, or son? Are you on top of it, an unpaid carer? Let's find that out together with people who might have a similar story to yours. Five people from different walks of life who have come to the realisation, ‘hey, I'm a carer’. This podcast will also explore why they did not ask for support in the first place and why some of them were ashamed to ask for help. Most importantly, we will also hear how they did find help, and about the individual and free support that worked for them in their caring role. But before our carers take us on the journey here at Tune in to Care. Let them introduce themselves.

Lena 00:02:10 Hi, my name is Lena and I am originally from Vietnam. I was born in Vietnam. My family migrated to Canada when I was two years old. From then, I sponsored my father over, that’s who I care for at the moment.

Mary 00:02:27 My name is Mary. I've been a carer for almost 30 years. I'm caring for my son.

George 00:02:35 I’m George. And I'm looking after my son. He has got autism and he is now 22.

Maya 00:02:45 My name is Maya, I'm from Sydney. I have two siblings. I care for my dad.

Luna 00:02:51 I'm Luna. I am a carer for my son. I'm not working at the moment because his care needs exceed you know, what is typical, and what is expected, I guess.

Adrian 00:03:09 Lena, she's a mother of three children and cares for her father who lives with Parkinson's disease. Mary is originally from Lebanon and has a grown-up son who lives with schizophrenia. George is from New Zealand. He worked in the past as a trained nurse and now cares for his grown-up autistic son. Maya, believe it or not, just turned 13 and is already a carer, dedicating some of her teenage years to her sick father. And last but not least, there is Luna, a proud member of the LGBTQ+ community. Luna cares for their autistic son. In this first episode of Tune in to care, we want to find out what constitutes an unpaid carer. When can you call yourself being a carer, and why? Let's hear how Lena, Mary, and George define themselves.

Lena 00:04:09 I actually didn't know I was a carer until I called Carer Gateway, to be honest. But also when I go to the chemist and buy my dad's medicine, the man who owned the chemist kept saying to me, Lena, you should apply to be a carer 'cause you're always helping your father. There's help out there. And I always just kind of ignored it and said no, because I'm his daughter. So I always felt it's my duty to take care of my dad. I didn't want to apply for any help. He was diagnosed with Parkinson's disease, as his disease progressed the neurologist actually says he doesn't have Parkinson's. He's got atypical Parkinsonism, which is like Parkinson's plus other problems, bigger problems, which Parkinson's medicines don't help. So as my dad's health is deteriorating I've become his carer pretty much. He needs help every day.

Mary 00:05:12 I’m a carer because my son got very sick and we didn't know what was going on, but he developed schizophrenia and bipolar and I have to be looking after him. There's no one wants to look after him because he was very violent. And it's really hard back then, I know from the beginning. But just I thought, he's, he's my son. I, I need to look after him.

George 00:05:45 My, my son was, could care for himself. There was no problem. He could shower himself and he could put his clothes on and do the normal daily things, but because of his lack of sleep, he was agitated all the time. He was like, anything would happen. He would get annoyed if he couldn't do the task properly. He would get annoyed and he had either throw whatever he was doing on the ground and, and walk away. And some of the language he was using wasn't very good at the time. We found that it was very hard for us, especially for my wife. She found it very hard not being used to autism, you know it was never ever over in the Philippines, it was just not mentioned.

Adrian 00:06:44 George sees himself first and foremost as a father to his autistic son. But the time and energy he puts into ensuring his son's wellbeing makes him without doubt a carer. So is Mary, who looks after her adult son. And Lena, who we heard first, looks after her father because as a daughter, she feels obliged to do so. Like so many people out there. Let's hear now, why Maya, the 13-year-old teenager and Luna both think they are a carer.

Maya 00:07:17 I go to my dad's house to help him. Sometimes I wash dishes for him and clean the house for him and give him company sometimes.

Luna 00:07:28 Well, my son, he's got multiple diagnoses. He's got autism and ADHD. And so yeah, I realised I was a carer because I realised just how much more support he was going to need and how much more from me he was going to need than the typical kind of parenting role. So I kind of realised like, this is, this is a bit more, there's more expectation, there's more work, there's more kind of fighting involved.

Adrian 00:08:08 Being a carer is not a choice and anyone can become a carer overnight. The circumstances are as different as the challenges that carers face.

Lena 00:08:20 I am originally from Vietnam. I was born in Vietnam. My family migrated to Canada when I was two years old. And from there I came to watch the Olympics in the year 2000 in Australia. And that's when I met my husband, we had a long distant relationship and we got married in 2003. From then I sponsored my father over, that’s who I care for at the moment. My parents are divorced, so I lived with my dad, so I didn't want him to be by himself in Canada. He needs help every day. He does have other carers coming to the house from my aged care, and they help him shower three times a week for an hour. But after that, it's really all me who does his doctors, cleaning his house, grocery shopping, whatever else he needs.

Mary 00:09:15 In the beginning, I didn't know I didn't get any help or I don’t know how to find help because everything gets, you know, I thought I have to just look after him with no help.

Maya 00:09:29 I saw he was struggling a bit, so my mum asked him to, my mum asked me and my siblings, like, maybe you should go help your dad a bit. So ever since then, we've been helping him quite a bit.

Luna 00:09:42 Well, it came just after he got his first diagnosis when he was four. So I was, I was really naive. I was a very young parent, so I didn't have any frame of reference. And I thought that his behaviour, the way that he kind of interacted with the world, I thought it was normal. And I met my partner and she's got experience with kids on the spectrum, so she kind of raised the alarm bells a little bit and we realised that there was something more going on and went through the diagnostic process. And yeah, it was kind of, it all, it happened really slowly and really quickly at the same time. It's, it's very, what's the word, paradoxical. So kind of all at once I realised that there was these kind of new expectations after he got his diagnosis that I was going to have to put in all this extra work and be advocating and, you know, always kind of hunting and searching for new and better support for him. So yeah, it was just really the, the additional requirements beyond that of being a parent. I, I kind of realised like, whoa, this is, this is a big job.

Adrian 00:11:17 You are listening to Tune in to care, a podcast about caring journeys of five different people, Lena, Mary, George, Maya, and Luna. So far we heard from them, why they think they are a carer and how they got there. But what actually was the trigger? What was the moment that made Luna and George realise they are a carer?

Luna 00:11:42 It was through, through the diagnostic process. So I kind of gauged from the reactions of the specialists involved that we were going to come out at the end of it with a diagnosis. And I kind of, it was a bit of a process. It was like that sense of disbelief, that sense of, you know, you almost have to grieve your expectations and the kind of life that you had planned for them, but then you get to start processing it in a different way and seeing that while their life may not be exactly what you were hoping and expecting, it's still going to be like, you've got to give them every chance to be, you know, everything they can be. And yeah, that process was, was difficult to start with because I wasn't raised very well, let's just say that. And so putting in that much care and attention and time and sustained effort was really foreign to me. And the amount of work that goes into it, that was something that was difficult to accept, to start with.

George 00:13:01 I've had to do a, a lot for him and, and to help him and, and his daily chores and, and, and that, but I've never, I never thought of as a carer. I thought it's my position as a dad is to look after my son and give him the best knowledge I can give him and, and keep him away from things which I, I've visualised and, and had in my lifestyle to keep him away from that sort of thing and to keep him, keep his anxiety down because he can get very, very quickly anxiety. We had a time there, it was one Christmas we went to go to a Christmas play and Manny wanted to stay home, so that was okay. So we let him home and then he rung me up at the, on my cell phone and said he, I could tell that he, he was so angry, just so angry. And he said to me, oh, I, I, I, I, I don't know what to do. And I said, well, I'll, I'll come home. No, no, don't, I don't want you to come home. I don't want you to come home. He said, I'm going to kill myself. So I went home, I parked the car down the road and I went up and, and he was sitting up on the, on the computer and F off, F off he said, I said, Manny, I'm not going to, I'm staying here. And I put my arm around him and then I started to cry. And then he said to me, what are you crying for? I said, because I love you so much and I don't want anything to happen to you. So with that, I stayed with him for a while. I stayed with him probably for about half an hour, three quarters of an hour. So I felt at that time I felt quite comfortable that everything was okay and that he had settled down. But that was one of the biggest worries I've, I've had.

Adrian 00:15:14 It is now time to introduce another person to our podcast. Tune in to care. Her name is Georgie Sawyer. She's an IPPS peer facilitator at Wellways Carer Gateway in Brisbane. I asked her to come in to help us to better understand the role of a carer. As we heard throughout the podcast, many people don't see themselves as carers. They don't realise the support they provide is actually caring. Georgie Sawyer is very experienced in that field, having been on a caring journey herself and in her role as a peer facilitator at Wellways. She knows the ins and outs of being a carer. Hello, Georgie, welcome to the podcast.

Georgie 00:15:57 G’day, Adrian. Thank you so much for having me.

Adrian 00:16:00 Before I ask you to tell us a little more about yourself, Georgie, let me recap what we just heard from our carers. Remember there's George who looks after his now 22-year-old son, Manny, he was diagnosed with autism and his son was in a state of overwhelm, which brought on feelings to take his own life. And this is a situation that can challenge any family. And it made George realise over the years that he's more than just a father. You heard Luna. Luna's son was also diagnosed with autism. The amount of work Luna had to invest for his care was in the beginning foreign to Luna and difficult to accept. And then we heard Maya, it's, it's unbelievable. She's just turned 13 and her mother asked her to help and care for her ill father. And imagine while other girls her age might together enjoying exciting outings or whatever, Maya instead goes over to her father's place, washes the dishes, cleans the house, and keeps him company. Vietnamese born Lena told us that she sponsored her father over to Australia, who is living with severe Parkinson's disease and she has three children herself and cares for her father every single day like everybody else does. To her it's a daughter's duty to look after her father. Mary was telling us her story as well. She cares for a grownup son who lives with schizophrenia and bipolar disorder because he can be very violent at times. And she says it makes it even harder for Mary and it's of no question to her that she's looking after him. After all, he is her son, Georgie. Does any of these stories strike a chord with you?

Georgie 00:17:54 Yes, it does. In my lived experience, caring for my loved ones, it's like as a carer you are constantly on. So we're in a constant state of readiness to be active or to activate ourselves. And looking back in my life from when I was a quite young, younger person, I can see now why I at times am constantly in fight or flight. It's like we're we're ready to go to action stations because of the fact that we were called upon in acute moments where our loved ones were in an acute state or were feeling overwhelmed in their own health situation that we were needing, they were needing our support in order to respond and help them in, in the space that they were currently in. As carers do, we respond, we put the needs of our loved one first and we do everything that we can. At times I have heard wording like it's like walking on eggshells because you don't know when that call is going to come through. But you know, we at, there's something very intuitive in a carer as well that we are able to sometimes even just tell, like I could just tell when my loved one's voice was different if I was talking to them over the phone or if a message came through or even if my loved one just wasn't talking to me as well. You tend to become very intuitive and yeah, you're able to respond in ways that maybe yeah others can't in your family group,

Adrian 00:19:39 I mean, is that a, a common story with carers that they are getting phone calls and, and they have to deal with really difficult situations and life-threatening situations like we heard from George. Is that common? Does that happen often?

Georgie 00:19:55 I think it's common in everyday society, yes, I do. For people who do identify as a carer and people who don't identify or choose not to identify as a carer, yes, I do. I think that's part of being a member in a community, that we are a tribe and that is happening day in, day out in life. Yes.

Adrian 00:20:14 Georgie, you will be a regular guest in our podcast. What actually is your role as a peer facilitator?

Georgie 00:20:21 So, IPPS, the acronym stands for In-Person Peer Support. And this is a course one of the three core services at Carer Gateway Wellways services. We support carers in the community to come together and join in a two-hour peer support group. The peer support facilitator on, on that hand, on the other hand, is a person who has direct lived experience of caring for a loved one who may have a disability or who may have, for example, a terminal illness or they may be struggling or being challenged with a mental health challenge and that's where my lived experience, when I'm facilitating and supporting that beautiful dynamic of connection of all the people coming together to form a bond, it's where I, I sort of curate that space so I'm able to, when questions are brought up or we’re exploring a certain topic, I will have that understanding and that empathy and that ability to sit in a space, a safe space with the beautiful caring community that we have there to be able to relate to them and to also support their own, their own connections with themselves and with others.

Adrian 00:21:42 Is that the reason why so many people who work at Carer Gateway are actually carers themselves?

Georgie 00:21:48 Yes, it is. Yes. A lot of us come from caring roles and we've had that lived experience and it's that deep, rich lived experience that it, it's, it's being fully embodied in an experience, whether it be good, bad, or indifferent. It's where we're able to create and forge a stronger connection on a human level, not so much on a clinical level. It's really just stripping everything back and just saying, we are here together, we're here to connect, we're here to listen, and we support people in creating that safe space. Yeah.

Adrian 00:22:27 Please stay with us a bit longer. I want you to tell us in a moment where and how one can receive free support as a carer. In the next episode of the podcast, Tune in to care. We will hear again from Lena, Mary, George Maya and Luna to find out how their perception of themselves has changed once they realised ‘hey, I am a carer’. In Luna's case, Luna had to reevaluate their whole life, had to pull back expectations and hope for a professional career.

Luna 00:22:57 I was very keen initially when he was very young to get back into work 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 that was, that was quite sad for me.

Adrian 00:23:19 Just one of many stories that we will continue to follow in our upcoming episode of Tune in to care, when we will ask, so you are a carer, but what next? Tune in to care is supported by Carer Gateway, an Australian Government initiative. Now, Georgie, over to you.

Georgie 00:23:40 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 00:23:57 Make sure you are not missing out on all the other amazing stories. Be part of this journey. Subscribe to the podcast on your favorite podcast platform or streaming service. Thank you Georgie Sawyer, and thank you for listening. I am Adrian Plitzco, goodbye until next time.

Note: Transcripts are generated automatically by AI and corrected manually.