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: You sometimes just think, ah, I can’t. I can’t add an extra thing to think about accessing another service to help make my life easier.
Carer – 00:01:11: I think it’s very tiring and also, in the beginning, feeling very isolated and lonely. And also, mentally everything is bounced to me.
Carer – 00:01:24: My son got very sick. He developed schizophrenia and bipolar. There’s no one who wants to look after him because he was very violent.
Adrian Plitzco – 00:01:35: Caring for someone living with mental health issues is very different compared to caring for a loved one with physical needs. And why is that? And to what extent? Carers not only face stigmas and misunderstanding in the community and sometimes even within their own families, but also how their caring role can impact their own mental health. Diana and Sandra, as an example, are two dedicated carers and they will, in this episode of Tune in to Care, share their own experiences. We will hear from them what it’s like being a carer affected by mental health issues themselves. It is more common than you think or might realise. Diana’s and Sandra’s stories are just two of so many others within this rapidly growing group of carers. Later on we will be joined by two experts shedding more light on the multifaceted world of mental health carers. But now to Diana and Sandra. Diana cares for her 20-year-old son who is diagnosed with severe autism. Diana herself has recently been diagnosed with ADHD, which has given her new insights into her own life struggles and her role as a carer. Her biggest challenge, caring for her son, was not having the right support for 20 years.
Diana (Carer) – 00:03:03: I’m a carer for my son Jacob. I am 52 years old, and I am a mother. I don’t work at the moment. I used to be a welfare worker and because the demands of my son got so bad, I had to stop working. We did not know he had autism until only a year ago, but because he was misdiagnosed with just social anxiety, but his social anxiety was so bad that he could not go to school, and I had to home school him. So yeah, it took up all my time. I’m also a single mother, so I didn’t have anyone else to help me with him for all those years. And he’s now 20 years old. His autism is really bad, so he doesn’t really look after himself, even though he could be able to do a lot more. I have just found out I have ADHD, only about four weeks ago. There’s also me that has to do some work on myself. I’ve just started to accept that I have ADHD and it’s also just starting to make sense how life has been really hard for me as well and had suffered a lot of trauma throughout my life and so did my son.
Adrian Plitzco – 00:04:18: Sandra, what is your story? Can you tell us?
Sandra (Carer) – 00:04:21: I have been caring for two of my grandchildren. The older one now is sort of moving on into his own life. He still has mental health issues with OCD, PTSD, ruminations, quite a few other mental issues. He doesn’t really accept his mental health conditions, so it is a big challenge for all of us in the family. And then last year, his younger brother, who was 14 at the time, came back to live with me. He’s been with me on and off since he was seven months old. He was diagnosed with ASD back in when he was in year five. All the boys had PTSD because of a home invasion when they tried to be abducted back into the care of one of their parents when they were younger. So, they’ve got mental health issues because of that. Zen has very, very, very severe social anxiety. I just find both parents have got mental health issues, and I find it’s so complex dealing with not only my grandchildren’s mental health, but I find that I’m an unwitting carer for the parents because of the dysfunction, the emotions, the mental health that is involved in the connection between the grandchildren and the parents. And I find for myself that, I’ve lost so much of myself, and I often question whether the rewards of caring outweighs the challenges of the sacrifices. And that to me, I struggle with a lot.
Adrian Plitzco – 00:06:24: Why do you think it is important that you are in this caring role?
Sandra (Carer) – 00:06:29: I have always been there for these children since they were born. They look to me like I’m their parent. They’ve always come to me, and I find that I’m the safe place for them. I’m the safe place. I’m the one that’s going to sort things out for them. And I’m the one that’s going to teach them how to grow into caring, responsible adults with a life ahead of them, which they wouldn’t have had before if I hadn’t have stepped into the breach. And even though I talk about sacrifices, it’s worth every bit of it. It really is. I would do it in a heartbeat again for these beautiful children. And even though, you know, I do struggle with it sometimes, I’d still do it.
Adrian Plitzco – 00:07:21: What about you, Diana? Would you do it again too?
Diana (Carer) – 00:07:25: It’s so important to me because I absolutely know my son better than anyone else in the world. And I know exactly what he needs. So, I think our mother’s instincts are amazing and I think we understand our children the best and I think we can give them the best care. And also, when he was going to school, the way the teachers were unable to teach him properly, they didn’t understand his needs. He wasn’t able to socialise properly, he was getting bullied. I was able to teach him a lot better than what he was when he was at school because I knew what he needed. So, I’m just saying that my love for him is so much stronger than anyone and I knew him so well, and there’s no way in the world that I would let anyone else care for my son.
Adrian Plitzco – 00:08:20: What are the challenges of caring for your son?
Diana (Carer) – 00:08:23: Not having the right support for 20 years. You know, like basically having to do it on my own and being a single mum, you know? So that was really hard and that was really challenging being told all the time, I’m not a very good parent cause I’m not doing the right therapy for social anxiety. You know, only now finding out that he definitely has autism and now thinking, oh no, well now I have to…..How am I going to undo the last 20 years of him getting the wrong therapy? You know, and that sadness. But how do I undo the last 20 years of his life? Yes, I have a lot of guilt on board. And also, because I’ve got ADHD and obviously, I’ve always had that all my life. I can see now how I’ve actually affected my son. You know, like maybe I haven’t always had enough patience maybe to just to get him cleaned every morning just to make sure he eats properly. You know, make sure he does so many things, to communicate with him properly. Just every day-to-day things that people just take for granted are so hard. And I don’t think they actually understand how it feels to have to just start your treatment now at 20 with your son.
Adrian Plitzco – 00:09:35: A question for Sandra, are you a single grandmother?
Sandra (Carer) – 00:09:38: Yes. Yes, I am. I have been virtually on my own for many years.
Adrian Plitzco – 00:09:44: Do you see similarities in your challenges that you have experienced in your caring role? Challenges similar to Diana?
Sandra (Carer) – 00:09:52: Yes, I can totally agree with Diana and the frustration of dealing with the children, just getting them to do everyday things, just getting them to go to school, just getting them to engage. And I’m constantly trying to get a level of support for Zen, which he’s getting older now, which is getting harder and harder. And I can’t do a lot to fix that unless there’s support behind us.
Adrian Plitzco – 00:10:26: Sometimes you could experience a feeling of shame or guilt when you are taking time for your own mental health. So when you realised that you yourself are in need of support and started seeking it, how did that make you feel?
Sandra (Carer) – 00:10:42: I felt before I started getting support, and even after I got support, I realised, I went through a stage where I realised I was totally worthless because we went through six years of court hearings with these children and it cost a lot of money. Their dad lost his business, I lost my house, I used all my superannuation, so I ended up virtually destitute. So, the financial implications and the emotional implications were quite severe with me. I felt hopeless. I felt worthless. I felt useless that I couldn’t do more for these children. And the guilt when I used to get angry when they really go over the top, I’d get angry, and I’d be quite curt with them. And then afterwards I think, why did I do that? And then I’d go to bed of a night, and I think I could be doing more. Why aren’t I doing more for these children? Yes, I feel guilt. I feel guilt every day that I can’t do more for him.
Adrian Plitzco – 00:11:53: Diana, you as a neurodivergent carer, how do you think your caring role varies to neurotypical carers? Do you think your own diagnosis will help you understand the needs of your son more?
Diana (Carer) – 00:12:07: Yes, I do. We share similarities. We have the same types of brains, you know, in the same way, we do actually the same similar things, little quirks. The only reason that I ever found out that I was neurodiverse is actually because I attended the Carer Gateway group. I would’ve never known that I was a person with ADHD. I was attending those groups, and I could never fit in. Then it wasn’t until the facilitator, one of the groups said, I think I found the perfect group for you, and I started attending a neurodiverse carers group, and the first time I attended that, they all looked at me and said, you have ADHD. And I’m like, “what?”. Which was an absolute extreme shock to me. Who would’ve never in the whole world thought I had ADHD, not me. No way.
Adrian Plitzco – 00:13:01: Before that. How did you find out about Wellways Carer Gateway? Did you know that a service like that exists?
Diana (Carer) – 00:13:08: My son was getting therapy for social anxiety and the psychologist said, I think that you might need some support as a carer.
Sandra (Carer) – 00:13:18: I was going through a cancer journey. Wellways Carer Gateway came along to find out about carers for people with cancer that they can be referred to Carer Gateway and get involved. So, the lady that was there, I was talking to her afterwards and saying that I was carer for grandchildren, and she actually put the referral through for me for being the carer of my grandchildren. So that’s how I got involved with Carer Gateway and Wellways. I just find that when you go along to these groups, there’s such a range of personalities there. And then others, I’m a listener, so I sit, and I listen, but there is many a day when I’ve nearly had a panic attack in some of these groups and I’ve wanted to get up and walk out, but I don’t because I know that at the end of it, I’m fine. And I’ve done a lot of things through them. We actually had a small group that used to meet for coffee after we’d meet up on a Thursday and just have coffee and just have a chat. I found that enjoyable and go home feeling better for having got it off our shoulders. But other than that, I go to counselling every week. I find that is, that’s what’s helped me a lot.
Adrian Plitzco – 00:14:44: And what about you, Diana? What other services from Wellways Carer Gateway are you getting?
Diana (Carer) – 00:14:49: I have had therapy through Carer Gateway, like I had actually a psychologist for a while. I attended a lot of little courses like art courses, or you could do financial courses or courses on therapy, like maybe learning to handle stress or even doing a massage course, like different courses to help you as a carer. And they’re just wonderful, positive courses that are really helpful.
Adrian Plitzco – 00:15:14: How are you doing now after receiving all that support?
Diana (Carer) – 00:15:18: I feel a lot better. I feel, I mean, if I hadn’t had got the support that I have got, I’m sure I wouldn’t be where I am today. It’s actually scary to think where I would be if I didn’t, you know, make the decision to get the support I did through Carer Gateway, if I didn’t attend those groups. I feel a lot more positive because I have other people now that I know that are in the same position as me. They’re also neurodiverse and they also are caring for children and young people that are also neurodiverse. So, I feel like I’m not alone. I have a lot more knowledge already, you know, because I’ve been given resources to help me to understand more about autism and about ADHD. I’m probably a lot faster, getting more resources quicker, knowing better, you know, where the best doctors are, the psychologist, psychiatrist, the best, you know, getting the best of everything really quickly.
Adrian Plitzco – 00:16:16: Sandra, what about you? Do you have some great news for us too? How do you feel after receiving support?
Sandra (Carer) – 00:16:23: Yes, I think it’s wonderful. And I’m actually going through a coaching, it’s six weeks of coaching and you come along, and you put down what you are needing to achieve because as a carer, sometimes you want to just bury your head in the sand, not have to deal with something, so, this is where you bring it out in a coaching and you put it into context and what’s more important, what can be left till last. Then they’ll work through that with you and sort of encourage you to push through with it. If there’s resources you need, they will source them for you. They’ll get people to contact you, like housing, health, anything and I find that that has been amazing. Also, some of the courses I’ve been to are to deal with child behaviour and the problems they’re having. I’ve been to courses about how to look after myself. Carer Gateway has sent me away on respite. I’ve done two lots of respite.
Adrian Plitzco – 00:17:29: With all that experience, what advice do you have for other carers?
Sandra (Carer) – 00:17:34: For other carers, my advice would be, try and not do it alone. Reach out. Reach out for these supports. So, I just find carers need to reach out, get some help, join a group, you will find the right group to fit in with and just don’t do it alone.
Adrian Plitzco- 00:17:58: Like Diana, you found a group that meets your needs. What can you add to Sandra’s advice?
Diana (Carer) – 00:18:04: It’s important you hang in there and I think it’s important that you don’t be alone when you’re a carer. That you reach out, just, you know, and that you just keep trying to find the right carers to be with because you know you need to find that right group for you, because their advice and their understanding is going to be valuable for you as a carer.
Adrian Plitzco – 00:18:42: Diana and Sandra are two mental health carers, sharing their personal stories and highlighting the importance of community support networks and the various resources available that have helped them navigate their caregiving roles. Joining us now are two experts, Lou Faulkner, General Manager of Carer Gateway Services at Wellways and Jenna Sachs, a professional worker at Wellways, focusing on providing comprehensive support to carers, especially those involved in mental health care. Lou and Jenna, you both followed the conversation I had with Diana and Sandra, both said that dealing with the mental health system is another challenge on a different level. In Diana’s case, her son was misdiagnosed for a long, long time. Let’s assume, and I’m asking you Jenna, let’s assume Diana would’ve come to Wellways earlier, back then, maybe without a proper diagnosis. How would you have handled that situation?
Jenna Sachs – 00:19:44: You don’t need to justify it, you don’t need to prove it, you don’t need to have a diagnosis. You can simply have a conversation and outline where the pressure points are in the caring role.
Adrian Plitzco – 00:19:55: Carers like Diana and Sandra, they have to deal with a lot of other people too, don’t they? It seems to me they often find themselves in a battle with the school or the hospital. Do carers get support from you as well when they are dealing with other institutions or with other people?
Jenna Sachs – 00:20:13: To an extent, when we are looking at eligibility, especially in the mental health space, a lot of people with mental health challenges aren’t eligible for NDIS funding, but they might be eligible for things through Centrelink, like carers payments, carers allowances. So, the trick is to kind of find more community services that can support the carer and the person they’re caring for outside of the well-known ones. If you come along to a peer support group, you might meet someone who has already navigated all these systems and be able to have that lived and living experience of what is the right fit for you and for you to determine which service is going to give you the best support that you’re seeking under your circumstances.
Louise Faulkner – 00:20:57: We heard Diana and Sandra touch on that as well, on how, you know, they were just saying like, just don’t do this alone. Go along to a peer support group or you know, if you have the opportunity to meet some like-minded people who are also navigating systems. Carers are incredibly generous with the information that they have, and they will share their story, and they’ll share their referral pathways and organisations that they’ve tried. Or people that they’ve reached out to for support and that’s the beauty of peer support groups. Yes, there might be a facilitator there from Wellways, but it is run by the people really and owned by the people who are attending so, it’s incredibly important. I’ve had carers walk away from support groups and I’ve watched them exchange phone numbers or exchange a referral pathway or just walk up to someone and give them a hug and just say, look, I don’t know exactly what you’re going through, but I’ve been through something similar. And you can just, you can see it in a room when you’re sitting with people and they’re talking and then someone shares their story, and the shoulders go down and they start to relax a little bit more. And it’s like you can hear people saying in their mind “oh, you just get it, you just understand”. I don’t have to go and explain my whole story and my whole journey again.
Jenna Sachs – 00:22:04: But that feeling of having a partner on the journey of the ups and downs, rather than being isolated and alone and feeling like no one else out there in the world must be feeling what you’re feeling. That comes back to the, the guilt or the “I could do better, I need to do better, I should’ve, could’ve, would’ve”. Because you sit with people who go, “well actually I felt like that too”. And so, there’s this authentic empathy that comes out as well.
Louise Faulkner- 00:22:30: And I think we heard both Diana and Sandra talk about that too.
Jenna Sachs – 00:22:34: And both still catching up with their groups outside of the program too, which is really a beautiful thing. Once you find your village or your people, it’s just so much easier. And that’s the feedback we get. It’s so much easier when you have connection and have, you know, hope together.
Louise Faulkner – 00:22:52: Is it of more help participating in a support group rather than being surrounded by a big family?
Jenna Sachs – 00:22:58: Yeah, I think at times if another family member, like a sibling who has kids with similar diagnosis, you could almost have a peer support within a family, but that’s not common. So, when someone talks to a family member and I know is common feedback, it will fall to more of this pity and sympathy. And for certain things, I think it’s important to keep connection and communication open in a family, but not always are they going to be able to understand because they’ve not walked a caring journey. I think families still offer love and support and direction, but to sit with another carer is like sitting with a companion who’s been there too.
Louise Faulkner – 00:23:41: So Sandra talked about, she was so honest and she said, you know, she’s lost so much of herself and does the reward of caring outweigh the challenges and sacrifices that she’s had to make? And I don’t know if sometimes is it a little bit easier to say that to people that you don’t know? Who you don’t necessarily think might judge you. And I’m not saying that a family’s going to judge you, but that’s a really hard thing to say to a family person to be that open and be that honest because it, you know, it can be assumed that you maybe don’t love or care as much as you should for someone.
Jenna Sachs – 00:24:11: So being able to be vulnerable and honest can be healing in itself too, in a judgment free space.
Louise Faulkner – 00:24:16: Yeah, we hear the word guilt all the time. You just never feel like you’re doing enough. You always feel like there’s something more you can be doing. But it’s also incredibly important to remember that if we don’t look after ourselves as carers, we can’t look after the people we’re caring for.
Jenna Sachs – 00:24:32: Yeah, and it’s a really good point cause Diana even commented on the school or people saying, “you are a bad mother, you’re not parenting correctly”. So sometimes it’s not just from the carer’s inner critic, but it’s actually coming from other people as well. And that’s just probably due to lack of understanding or walking that path as well and having that lived experience.
Adrian Plitzco – 00:24:54: Jenna, we covered a few topics here. Is there anything else in the conversation that stood out for you?
Jenna Sachs – 00:25:00: I think really important with the things Sandra and Diana spoke to is, you know, this idea of get support, reach out, ask for help. Even if you go to a group and it doesn’t feel like the right fit for you, try another group. And even if it’s just turning up and sitting with someone in a coaching session and just feeling heard, seen and validated, that can be really powerful. And we’re here so carers don’t have to do it alone. And there are other services that we might know, being a gateway, that can also help build that support system and scaffold the carers to be able to stay in the caring role longer.
Adrian Plitzco – 00:25:38: So why is it important that you actually put carers into cohorts, like mental health carer? Does that then come again with additional support, different kind of support?
Jenna Sachs – 00:25:50: We don’t break people into cohorts, it would more be if someone has identified as being a mental health carer, there might be a specific workshop group or a coach who’s really experienced working with mental health carers. Or like we were talking about with our contact centre, there’s a whole team that may or may not be necessary to provide that extra support, but we don’t put people into boxes. The offer for groups, coaching, whatever it is, is shared to all carers. But we might be more specific with sending a flyer or an invitation to a group or a workshop knowing it’s specific to mental health. But we do that for neurodiversity, we do that for age, we do that for palliative, young carers.
Louise Faulkner – 00:26:39: Well, it’s actually, it’s all carer led.
Adrian Plitzco – 00:26:41: Carer led. What does it mean?
Jenna Sachs – 00:26:43: Our whole ideology of carer led is self-determination and autonomy and helping carers be able to verbalise and vocalise what they want. And so, there is this opportunity in IPPS groups where we do have a lived experience facilitator in our in-person peer support groups. So, without a bias or without thinking, this group needs this topic or this conversation, it’s put to the carers, and we do that in every area of the Carer Gateway. “What are you wanting, what are you needing?”.
Adrian Plitzco – 00:27:21: Let’s go back to Diana. She herself has been diagnosed with ADHD, which sort of turned her life, as she knew it, upside down or it guided her at least into a new direction. This was another challenge Diana had or has to deal with, would she find support from you in that regard?
Jenna Sachs – 00:27:39: So the supports we provide in services aren’t tailor made to someone’s diagnosis, but more where they’re sitting in that relationship and role. Yeah, so for Diana, for example, she’s obviously in the caring role and there’ll be other supports out there to help with the mental health diagnosis side of things, but we’re there to support her as a carer and scaffold supports around her, so she’s able to stay in that caring role.
Adrian Plitzco – 00:28:07: Lou Faulkner, General Manager of Carer Gateway Services and Jenna Sachs, coach, both at Wellways. Thank you.
Jenna Sachs – 00:28:15: Adrian. Thanks for having us.
Adrian Plitzco – 00:28:24: Being a carer has its highs and lows, and I hope that this episode provided valuable insights into how mental health carers can connect with the supportive community and how they can access resources to help them manage their challenging responsibilities effectively, and, most of all, taking care of themselves. In the next episode of Tune in to Care, we will hear from young carers, young people aged 4 to 25 who provide care for a family member. And yes, you heard right, as young as 4, they are kids or teenagers who take on caring roles all while growing up. So don’t miss out to learn how they handle their caring responsibilities while they also go to school and study and hear what specific services are available to those young age groups. 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. Subscribe to the podcast on your favourite podcast platform or streaming service. That way we will meet again in the next episode. I am Adrian. Thank you for listening.