Episode 4

Transcript

Adrian 00:00:02 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. As always, I will speak with Georgie Sawyer later in the podcast. Georgie is an in-person, peer support facilitator at Wellways Carer Gateway. She was on a caring journey herself at a very young age, and she knows the ins and outs of caring from a personal but also professional point of view. And here are the carers we follow on their journey.

Lena 00:01:13 My name is Lena. I am originally from Vietnam. From then I sponsored my father over as who I care for at the moment.

Mary 00:01:23 My name is Mary. I've been a carer for almost 30 years. I'm caring for my son.

George 00:01:31 George, and I'm looking after my son. He has got autism and he is now 22.

Maya 00:01:40 My name is Maya, I'm from Sydney. I care for my dad.

Luna 00:01:44 I'm Luna. I am a carer for my son.

Adrian 00:01:49 The caring journey is a long journey. Many go down that path alone completely on their own. We heard in previous episodes what it means to look after loved one without support or help from anyone, not even from family or friends. And in society unpaid care doesn't seem to be valued much either, as George will explain in more detail later.

George 00:02:14 Yeah, I don't think a lot of people realise exactly what, and there has got a lot of stigma to it. Oh, you're a carer. Oh, I wouldn't do that.

Adrian 00:02:22 Carers have to cope with every situation. Keep trying to do it alone without being appreciated. Some then start to doubt their capacity to provide adequate care for their loved one. And the ambition to provide your loved one with the best care possible can also lead to the next level on the downward spiral guilt.

Lena 00:02:44 I felt really guilty. I felt really guilty feeling the way I felt actually, because I was pretty much raised as if like I am the daughter. So it's my duties, my job. So pretty much it's all me. And plus my dad, I think he feels embarrassed if someone else was to help him. Didn't feel so comfortable. That's how I felt. I failed as a daughter, that I was un not capable of fulfilling my father's needs. And it just made me feel like a failure. Yes, I felt that way. I wasn't able to live up to his expectations. And I think that is more of a cultural thing, feeling that way. But also a father daughter, he doesn't, my dad, he understands that it's hard on me 'cause I have my three children as well to raise. But I think he just feels, it's just, it's expected that I help him. And when I, I kind of explained to him that I was seeing, I seeing a counsellor, he didn't understand. So I just left it trying to make him understand how I was feeling and that I'm busy as well. And I can't always be there when he exactly, when he needs something, like he just needs to wait. And that was hard for me to say no, to actually even just say no, it was hard.

Adrian 00:04:10 Says Lena, who's the sole carer for her father. For George, it was not a question of not having done enough for his 22-year-old son, Manny, in his wife's eyes he even does too much at times. For him some of the experiences caring for his son bring back memories from his relationship with his father, memories that are very personal and memories of things that went wrong with his father that he doesn't want to repeat.

George 00:04:41 There are times when I, I've, things have happened and, and I thought, ah, maybe if I would've done something a little bit different, it would've calmed that down a little bit quicker. With, with the problems with my father I've always tried to not let the same actions and the same sort of thing happen to, to, to my son. I didn't want to get that sort of involvement in it. So I, I kind of probably my wife said to me, but you don't do this, you don't do that. But I've, I've kind of, maybe I should have done something a little bit different. But if, if I brings me back to, to my boyhood and I think, no, I don't want that to happen. I had enough problems for that. I ended up staying with my grandparents for quite some time. My grandparents took me away. My father used to drink a lot and stuff like that. And when my father was passing away, I was the one that nursed him. And then my auntie come up to me and said to me, Georgie, your, your dad wants to see you. So I went in and I said, yeah, dad, what, what is it? And he said, oh, I just wanted to tell you I love you. And I thought, 50 years it’s taken you to say that. And that really hurt me. That really knocked me back a mile.

Adrian 00:06:25 Mary on the other hand, never doubted her capacity of providing care for her schizophrenic son.

Mary 00:06:32 Not really. I see that like I have to do that. I have to be his carer because no one wants to look after him. You know? That's how I see, like, I feel myself. I'm stuck, you know, and you have to do that job. It's my job. I bring him to this world. He got sick and that's what happened. And I mean, I see it, it's just now it's, it's more easy for me than before 'cause he was very violent towards me. Very violent.

Adrian 00:07:06 We heard in the previous episode how Luna, at the beginning of the caring journey, had the courage to reach out to friends and ask for help pretty quickly. Luna had to learn that they weren't ready. They didn't know how to respond, and they did not have what Luna needed from them. Luna experienced a crisis doubting themselves as both a parent and a carer.

Luna 00:07:31 If you can offer an understanding ear that that can be more meaningful than, you know, you could possibly imagine. Being able to have someone who doesn't judge you, who's not gonna talk down to you and make you feel like you're a failure for struggling. I think that's really crucial for, for everyone that's a carer, because it, it does feel so isolating and you do feel so alone. And so having that space to be able to just express what you are feeling without worrying that it's gonna reflect poorly on you, or people are gonna think, oh, well you can't, you're not cut out for this. Like, you should just give up. You know, my son's got some really extreme behaviour traits due to his disabilities. So we've spent time in the, like the mental health ward up at the children's hospital on more than one occasion. And I, I didn't know any kind of support was available for carers. I just thought, oh, you just go get some psychology or you go try to make some friends or something and hope that they understand. And there was a time where, yeah, I was in, in a pretty big crisis. Things were really difficult and I was really doubting myself as both a parent and a carer. I didn't know whether I had the capacity to provide the care that he needed because I did feel so alone. I didn't have anyone kind of backing me up except my partner. So it made it quite challenging.

Lena 00:09:28 Yeah, you don't wanna, you don't wanna ask for help 'cause you don't wanna feel like a failure. Like you don't wanna, I didn't, well, I didn't wanna feel like I'm not capable of taking care of my dad and I knew I was, but his condition, I guess his, his expectations are a lot higher and is more demanding. And then it makes me feel overwhelmed.

Mary 00:09:46 I don't like mixing with people with mental illness or they don't, they don't wanna support you full stop, like makes you strong or tell you are you, it's gonna be all right and this and that. And I can see it. It's not all right, you know? But yeah, I'm, I've lost heaps of friends.

Adrian 00:10:08 Maya, the 13-year-old teenager sees it in a more pragmatic way. Her advice, if they do not understand your caring role, maybe don't be friends with them.

Maya 00:10:20 I try and join in as many things as possible, but being a carer won't change that because no one has to know your life if you don't wanna tell anyone, you don't have to. But it is like really sad to be ashamed of it. But if you really don't wanna tell anyone, you can just keep it to yourself. No one needs to know about it. I know it took me a while before I started, before people started asking me questions. I know I was pretty ashamed about it, but I got used to it. So to if, if you are still ashamed of it till this day, you really shouldn't be. But it's okay to be ashamed because it's embarrassing maybe to them or like people might make fun of them. But yeah, that does happen because of these reasons. But just don't be ashamed. Maybe if your friends are saying it, don't listen to them. Maybe don't be friends with them. If maybe a cousin's saying it, maybe don't talk to them. Maybe if a family friend's saying it, don't be a family friend. If they don't want to tell people even their own mum, it's okay. They can keep it to themselves. And if they never mention it, nothing will ever happen.

Adrian 00:11:38 Carers are stigmatised. That's what Luna also believes. Not that the carer themselves created it, it's the ignorance or the overwhelming feeling towards the role of a carer, which one cannot understand

Luna 00:11:52 When, when you're a carer, everybody has something to say and most of it's really unhelpful. So it's usually well-meaning people who don't realise that they don't actually understand. And you know, you'll reach out to someone for some support or even just to hear you while you are feeling, you know, some kind of way in a crisis or whatever. And you'll reach out and they'll say like, oh, have you tried, you know, talking to this person? Have you tried this kind of thing? Have you, you know, you get the kind of old school people that just think that kids need to be smacked and, you know, punished for this kind of behaviour instead of showing understanding. And so it does create that stigma where you feel like you can't reach out for support because it doesn't feel like anybody understands. You feel like you're very alone in your journey, and that anyone you try to reach out to that's not in a therapeutic sense is going to be too overwhelmed. It's gonna be too much for them, and they're not gonna stick around for very long. So it's, it's a very lonely process.

Adrian 00:13:07 Overall. The care sector doesn't have the best reputation in our society. The pay is low and under staffing and exhaustion among the ones who do work in it is high. They are the ones who are paid carers, professionals. George, who is now retired, used to be both for many years, working as a nurse in the care sector, while also being an unpaid carer for his son. So the care never stops. And on top he agrees that there is a stigma that comes with being a carer.

George 00:13:41 Oh yes. I, I've seen it quite a bit, you know? Yeah. Especially in, in nursing. I have, yes. Yeah. Because I've done aged care and nursing as well. Just before I retired I did 10 and a half years of aged care. And I've seen it there with, with, you know, and there at times it's, I and I, I just think you shouldn't be here if that's the case, you know? And, and I think people don't realise what carers do. They're not there 24 hours, you know, a day. And it's in the morning, it's in the afternoon, it's when they come home from school, it's at nighttime, middle of the night in the morning, something happens and they, they're, they're upset. And you, you go into your children and you could be there for another couple of hours and you lose sleep and that sort of stuff. A lot, a lot of people just don't understand carers and they really don't, you know, it's, it's not until you've actually done it and realised and, and how much you put into it for your children. And if you're caring for somebody else at the time that, that you have to put into them, you know, to either feed them and, and look after them. Yeah. I don't think a lot of people realise exactly what, and there has got a lot of stigma to it. Oh, you're a carer. Oh, I wouldn't do that, you know, wouldn't do that. I wouldn't wanna be a carer, you know, so I've seen that. Yeah. It's personally it hasn't bothered me. I really don't so, so long, so long as I can, I can make them happy. So long as, so long as I'm doing my job as I was with nursing and aged care and, and for my family and my, my son and that, it's never, it's never bothered me to, to, if people come up to me or, or, or make a comment, you know, about my, my son, I just say, okay, fine. There you go, tada. And it's, that's it. I, I don't, I don't dwell on it. I don't, I don't want to dwell on it. I think that's the worst thing you could do is just dwell on it. It gets you nowhere where, so it's, so, it's, it's more peace of mind to say, okay, bye-bye, goodnight, see you later.

Adrian 00:16:08 Here on tune in to care I welcome back Georgie Sawyer in-person, peer support facilitator at Wellways Carer Gateway. Hello, Georgie.

Georgie 00:16:18 Hello Adrian. Hello caring community.

Adrian 00:16:20 We have asked the carers on this podcast what made them reach out for help. We asked them if they have ever felt the pressure or feeling like they could not do enough for their loved ones, which then led to reaching out for help. In some cases, like Lena, she clearly spoke of being plagued by guilt, guilty of not doing enough. Do you hear that too, in your peer groups?

Georgie 00:16:47 We, we do, we have a common, a common chat about, you know, the, the mutuality of not, not feeling like we're doing enough or whether we maybe didn't go into a certain situation the best way that we could have at the time. There's also that feeling that we're so isolated in our own caring journey that, you know, we have a lot of people on the outside looking in and just doing a lot of judging. So at times that can also make us feel like we are just, you know, not doing the right thing or we're not doing enough, or we're not doing the right thing by the person that we're caring for. So I do feel at times that, that it's, that that guilt is something that's within us, but it's also, it's also feelings and, and talk from outside in the peripheral that we hear and that we have to go through as well. We carry others' opinions and judgements of what we're actually living day to day. No one actually walks a day in our shoes,

Adrian 00:17:56 From George and Luna we've heard a clear yes to the question if carers are stigmatised, I can imagine that feeling alone throughout the caring journey does easily lead to the assumption that everybody out there is against you because you are not like them. They are not in a caring role like you are. And that leads to the assumption that they look at you. Yeah, as if you are not normal. What's your answer, Georgie? Is that how you see it to?

Georgie 00:18:24 I can, I can relate to the not being normal side. I think when I was a teenager, you know, caring for my parents, it was, you were sort of, you kept everything on the down low. And I think that's because if I would've really open up, and I know some of our, our beautiful carers have expressed this, that if you open up, you may overwhelm. We may actually overwhelm people who we are talking to, or we may frighten them off when we just want connection with them. So you try to wear this mask and adapt to what everyone else is doing, but deep down inside your, you're living a bit of a lonely existence because you just, you just want someone to hear you and see you.

Adrian 00:19:13 There is obviously fear that holds you back from revealing yourself. And there would be shame involved as well, wouldn't it?

Georgie 00:19:19 Guilt and shame seem to go hand in hand. It seems to be a very common theme. I know that, you know, the, the stigma around and the negative labels of, you know, people sort of trying to problem solve you. So if you were to go and actually be super vulnerable with someone because you're trying to reach out and share what's actually going on, and you just need to vent or you just need to let off some steam or just go, God, this is hard. Or geez, I just don't think I'm doing right by my family, or, geez, I don't even know if I can do this anymore. Like sometimes I just wanted to say that I just, I just wanted the rock to be lifted off me off my chest. I wanted to feel carefree. I wanted to say that to someone, but it was the fear of what I was gonna get on the other end of that. And I think that whatever I was going to say had the potential to make people really uncomfortable. And I think that sometimes in society, it's those deeper moments where we just wanna be heard without someone problem solving us or having their own agenda on how to fix us. We just, yeah, we just wanna be heard and, and I guess validated too that, yeah, this is really hard. And I think that's, it's that shame and guilt that when we're, when I've been in a peer group, in a peer support group, you're actually able to sit in a space of compassion with people where you're sitting alongside people from all different walks of life with all different caring roles and different caring journeys. But it's not about who's got the harder role or who's got the harder life or gone through the worst thing. It's about just showing up for each other and really being vulnerable and allowing people to say their peace and just sitting by their side and just sitting in a space of compassion and, and trust and holding that dignity and respect for that person. Because like I said before, no one ever walks a day in your shoes. So it's being able to honour that person and honour their story and what they're going through, and just listen, purely listen.

Adrian 00:21:44 Being heard, that is the key word. In the next episode, we will get to the chapter where our carers finally access help from the outside. How did they find out, what was the first step and what was the first experience?

Mary 00:22:00 We went to meet in with Wellways and I was so excited, so happy that day. I was like, it's relief for me, you know, something new. And they said they helped, they helped the carer. I was like, like you win lottery.

Adrian 00:22:18 Let's learn together about the all important light at the end of the tunnel in the upcoming episode of Tune in to care, a podcast supported by Carer Gateway. And in the meantime, if you think you are a carer, you probably are.

Georgie 00:22:34 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 00:22:52 Make sure you're not missing out on all the other amazing 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.