Monica Benney
Monica resigned from senior management to care full-time, and discovered that her own survival depended on it.
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Monica became a full-time carer at 18, newly married with a newborn, when she took on her brother who has a profound intellectual disability. She didn't know what support services existed until she was pregnant with her second child and needed someone to care for him while she gave birth. Over 35 years, she has learned that asking for help is not weakness. It is survival.
Ten years ago, her husband had a high-speed motor vehicle accident. Monica thought adding a third person to care for wouldn't be that different from two. She was wrong. The jump from two to three felt enormous. She balanced caring for three people with completely different needs while working in senior management roles in social work and disability services. Then two years ago, she was critically ill in hospital during COVID, having made arrangements to die while her family fell apart at home. She came through it by setting tiny goals each day, even when a shower left her unable to move for two hours afterwards.
After that, everything shifted. Monica worked with a carer counsellor to clarify what she actually valued. The answer was clear: her family needed her at home more than she needed a paycheck. She resigned from her management role and hasn't looked back. She still has rough days. She still needs support. The difference now is that she lets herself receive it, and she has built a village of other carers who actually understand what it means to have no control over someone else's bad day. That understanding, she says, can only come from lived experience.
“Not all service is good service. I'm going to come into your home and I'm going to take you to your bathroom. I'm going to strip you naked, and then I'm going to shower you, and then I'm going to say, see you later, have a nice day. Now, is that good quality service, or have I just invaded every part of your world?”
“My social work degree was a journey of self-discovery. It was stuff I already knew because I was already dealing with it on a day-to-day basis with my brother.”
“Every morning I wake up and that's when I will listen to a podcast, that's when I will read a book, when I will just have some alone time. I have that every single day. I try to have at least half an hour.”
The hero, today
You need a whole village to help you. It wasn't until Monica got support that she realised how valuable it actually is. Respite, both formal and the small moments of self-care every morning, is not a luxury. It is what keeps you from burning out entirely. Not all service is good service. The presence of a support worker does not automatically mean the person being supported is being treated with dignity. When you hit your limit as a carer, that's not failure. It means you've come to a real boundary and that's okay to name. Find an ally, through Carer Gateway, Carer Vic, a support coordinator, or another carer, someone who will have your back and help you assert both your rights and the rights of the person you're caring for. Other carers understand what it means to have a shitty day you can't control, where someone else's bad moment becomes your problem. That's compassion that only comes from lived experience.
Yes. Monica Benney is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.
Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.
You need a whole village to help you. It wasn't until Monica got support that she realised how valuable it actually is.
Respite, both formal and the small moments of self-care every morning, is not a luxury. It is what keeps you from burning out entirely.
Not all service is good service. The presence of a support worker does not automatically mean the person being supported is being treated with dignity.
When you hit your limit as a carer, that's not failure. It means you've come to a real boundary and that's okay to name.
Vinay Nair (Host) · 00:00
This limited Kintsugi Heroes podcast series was made possible with grant funding from the Boopa Foundation Australia through their Community Grants Program. If you'd like to find out more about Kintsugi Heroes, head to kintsugiheroes.com.au. Welcome to our Kintsugi Heroes special series, Australian Carers, where we shine a light on the stories of the important Australians who provide voluntary care for someone in need. In this episode, Fine Nair had a chat with Monica Benny, a dedicated carer with over 35 years of experience who has balanced her responsibilities with her professional roles in senior management and social work, offering invaluable insights and heartfelt advice for fellow carers. Now, let's get to the conversation.
Monica Benney (Guest) · 00:55
Welcome, Monica.
Vinay Nair (Host) · 00:57
So I suppose a little bit about me and my, as I would say, my journey. So I started off my journey as a carer when I was 18. So I was a young carer and that was through my own choice. So newly married, newly with a child, and officially became a carer when I was 18. Looked after my brother on and off, who has a profound intellectual disability. From when I was about 16, 17 at different times, but full-time from when I was 18.
Monica Benney (Guest) · 01:30
And you said you were married at 18 too?
Vinay Nair (Host) · 01:32
Yeah, married. Um, so still married to the same man to this day. So whether that's by sheer luck— I always say you get less for murder— but you wouldn't have it any other way. So I started off as a, as I said, as a carer officially at 18. Didn't know what services were available, thought I could do it all myself. You know, as any cocky 18-year-old would think. And, you know, having a new baby, so I had a son and, you know, didn't realise that there was support available. So did that for a few years on my own and raised the kids and husband was working and then it was, you know, so we did that for a number of years. We moved to all different places for work for my husband because he drove trucks and had to live in that area. And had a second child as a— with, with us, with looking after my brother. And that was the first time I sought out services, was when I was pregnant with our, with our daughter. I was 21 when she was, she was born. So we— that would have been about 3 years after we, we started caring for my brother, and we needed someone to look after him whilst I was in hospital having the second child. And that's when I found out there was Respite. So we went to Respite and then that started that journey of learning about services and we still only had very minimal services. Then we come to live in the location, the community that we're in now, and we started to get more services, which was great. And, you know, I saw him grow metaphorically, not physically. Because he was an adult when he come to live with us, grow in what he was able to do because his previous life was very traumatic and home life. But you wouldn't think that now. He's, you know, 35 years on, he lives a very good life and still lives with us. So he's come along that journey. I returned to work in a part-time capacity, started off volunteering and wanted to give back to the community and still do to this day, want to give back. So when my son was 14, he was— his mental health was emerging, and that was, you know, quite challenging as a family because we had my brother and he was receiving a variety of services that increased, and I think back when my son was 14, 15, I think we were getting about 3 hours of support a week, which was nothing in comparison to his needs. And as a— he has a profound intellectual disability, so functions anywhere between a 2-year-old and an 8-year-old depending on what it is. So he can't prepare his own food, all it has to be done for him, but he can eat it himself. So therefore he functions at a higher level for some of those things. Then whilst my children were young, I returned to study myself. So not only was I volunteering at the local community health center just a couple of hours a week, as I said, to give back to the community, I then went to— I studied off campus back then, which now that you could do it online, whereas back then it was correspondence. As such, and I did my social work degree. The best thing that I could have ever done was to, to do that. And I always say that my social work degree was a journey of self-discovery. It was, it was stuff I already knew because I was already dealing with it on a day-to-day basis with my brother. Um, but seeing how all that fitted in, um, was, you know, it was, as I said, journey of self-discovery. And when I finished my social work degree in 2004, I returned to work full-time because we had to support our family. We were building a home. So I returned to work full-time and did a variety of different roles. But one of the roles that I did was around planning for people's future. So the precursor, for a better word, to the what is the the NDIS today. So Victoria had a scheme called Support and Choice that was, as I said, rolled out in about 2004. That became an individualised funding program, and then the NDIS rolled out. So very much the same. So it was about exploring people's goals, and, and so I thought really fit well with who I was as a person and how I looked at my brother's needs. Obviously, my, my son's mental health emerged during that time, and I was going, I can't do work and then come home and deal with it because I was working in a multitude of spaces. So I started to look at other ways of working. So I, after a few years of doing, you know, frontline social work, managing Westbine Houses, etc., I then moved into quality and risk, which is what I did until I stopped working in December of last year. So making sure that services were good for everybody. When I was doing frontline work, I was looking at how I was making a difference in individuals' lives on a daily basis in what I could do. So I never ever thought that I could change the world. Um, but I could assist people to, to be the best that they could be. So I worked from that premise. When, as I said, my son's mental health emerged, I thought, I can't continue to do this. And like, I had my brother and then my son, and I'm thinking, I can't continue to do that in the same way. I can't be full on at work working individually and then being in that home environment and doing the same thing. So I moved more into management, um, and as I said, into that quality space. And that was about making a difference in more people's lives in a different way. So still went out and worked with clients when I had to, but predominantly in the back end and making sure that the workers that were going and working with clients were actually making a difference in their lives rather than controlling it. Because they used to use an example, not all service is good service. So I say to people when I would be working in the community sector, they'd say, oh, Monica, they've got a worker, what does it matter? And I'd give the example of, all right, so I'm gonna come and knock on your door, and this is about drawing on that experience because my brother has a lot of personal care. As part of what support he gets. And I'm going to knock on your door. I may or I may not show you identification. You're going to just take on face value that I'm from the organization that said that they were sending someone. You don't actually know because you've never met me. Then I'm going to come into your home. You don't know me from Adam. I'm going to come in and then I'm going to take you to your bathroom. I'm going to strip you naked, and then I'm going to shower you, and then I'm going to say, see you later, have a nice day. Now, is that good quality service, or have I just invaded every part of your world? And they go, oh, I didn't look at it like that. I said, well, that's how I see it, and I don't want anybody to feel that vulnerable. So that was the premise of the quality improvements that I made in the organization that I was working for, that that was the lens that we had, that it wasn't any service is good service. Service had to be good service. So I did that for— and, um, worked in that organization for a while, worked there for 12 and a half years actually. So they were quite good to me. My husband then, who is the third person I look after, he had a high-speed motor vehicle accident now 10 years ago, just over 10 years ago. I thought at the time what's the difference? What's 2? What's 3? What does it really matter? I can tell you the jump from 2 to 3 is enormous. The jump from 1 to 2, not so hard because I was already looking after my son. Um, as I said, he was a teenager. The jump to looking after somebody that was— had lots of hospital visits and lots of trauma that goes with the motor vehicle accident was very different. But did I maintain my job? Did I maintain my positive outlook on life? Absolutely. I am a firm, firm believer that you're only given something in life that you can actually deal with. Sometimes you might go, why me? And that's okay. You can have those times. We all have those times. But it's about what you can take from that. Um, and I've been looking after that person now for 10 years, so 3 for— so in total, 35 years of caring, but 10 years in caring for 3 people with completely different needs. When I support them, it's completely different. One needs you to work alongside of them, the other needs you to role model, and the other just needs you to bark orders at them. So just— so they all have different needs. At the end of the day, I'm exhausted. But do I regret that decision? Never. Not once. Not once. I think it's made me the person that I am. I was able to work in very senior management roles, probably for the last 10 years. I've only just stopped working in December of last year, but I haven't really stopped working. I've started my own business to make that difference, to continue to make that difference, but to balance it and to select the clients that, you know, have had it a bit hard. So the clients that I work with at the moment, you know, some of them have done it pretty tough and haven't known what a good life looks like. So that's my mission, is to, to help them have a good life, not make it good for them, for them to do it, because anything is achievable.
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This conversation includes eighteen and married with a brother to care for, learning respite exists when pregnant with her second child, going back to study while raising three people, her son's mental health emerges while she's building a career, the jump from two people to three and making time for herself every single morning.
Monica Benney (Guest) · 12:07
So, Monica, you know, you've, you've talked about a number of different, um, you know, scenarios and experiences that you've had. I want to just pick on one thing to start off with, about the matter of respite, right? You talked about how you found some respite for your brother, but also, can you speak to the listeners about respite for the carer as well? Because I think a lot of people feel like it's the person who they're caring for that they need respite. But how does it differ to respite for the carer?
Vinay Nair (Host) · 12:38
Yeah, it works both ways. So when my brother goes, and he's the only one out of the three that I care for that goes to respite, but he also has probably the most physical needs. So respite gives us all an opportunity. So he goes off to the farm and has a lovely time with all the farm animals and has an absolute amazing experience, whereas for me it gives me time just to be me without having to worry about, well, has the support worker turning up? Has he had his shower? Has he made his bed? Has he been fed? You know, it takes away that thinking, I suppose, even if it is just for a couple of days. Um, and even that's, that's, that's accommodation respite. But when he's got support workers and when he's got good support workers, and there is a difference between good and good support workers and just support workers, is that again gives me time to have that break to do things for me. Because if I don't look after me, and sometimes you forget that as a carer, and I'll be the first one to say I'm not always great at looking after me, but it's about finding those moments that you can look after you. So respite is— can be very formal in that you've got a support worker, or away at a respite. So I consider the time that he is away at respite at the farm to be really, really valuable. It allows me to do, you know, even though I care for my husband as one of the people I care for, but allows me to go out for a date night as such. Because otherwise, if I go out anywhere at any other time, I've got to take them all with me. Whereas I, if I don't have my brother, then I can leave my son at home and say, right, go and have something out of the freezer. Dad and I are going out. Can't really do that unless he's in respite.
Monica Benney (Guest) · 14:41
So it's giving you, giving you time to kind of, you know, recharge and be energized and, and do something that, uh, that you might enjoy.
Vinay Nair (Host) · 14:48
Yeah, but I also think respite is about building— there's formal respite, which is what I've just talked about, But I also every day make time for self-care or respite, if you wanna put it in another way. Every morning I wake up, like I'm a chronic insomniac, but I will wake up and that's when I will listen to a podcast. That's when I will read a book, when I will just have some alone time. That I, and I have that every single day. I try to have at least half an hour. It'll be when I make a cup of tea and that might be at 4 o'clock in the morning, but you know what? That's okay. Make a cup of tea and everybody in the house is asleep. So it's me time. If I have to have me time during the day, I will go and have a shower because they won't annoy me while I'm in the shower. So you can, it's the little things that I think are essential. And if I can say anything to the listeners and watchers is make time for you. If you don't, you will just burn out. And that can be something as simple as, you know, guilty pleasure scrolling through Instagram and watching funny cat and dog videos and having a good old giggle to yourself. Even just getting in a shower and just going, just wash whatever it is away. Take those little moments and value them. The formal respite's great, and I would not be without it, but it's the little things every day. And some people would call that self-care, whereas I see that as a little tiny bit of respite.
Monica Benney (Guest) · 16:32
A little tiny bit of, you know, a space, a space for yourself, you know, creating, creating a bit of boundary. Something else that I wanted to touch on, you know, you talked about how, you know, you decided to look after your brother at a very young age when you, when you were starting a family of your own. You know, and, you know, I'm guessing at that point your understanding of what caring was is very different to what it is like now. What would you, what would you say to Monica of, you know, when she was 17 years old about, you know, about caring now?
Vinay Nair (Host) · 17:05
With hindsight, and we always like, hindsight will always come and bite you in the backside, I would say you can't do it all on your own. You have to have a whole village to help you. You know, when I was, you know, young, I thought I could do anything and be everything. And as a care— you know, I was 18, I thought I was invincible, I can do anything. And it wasn't until I started to get some support that I realized just how valuable that is. So yes, I dealt with the, but I'm supposed to be able to do this myself. And if it was a message I would give to the 18-year-old Monica with all the wisdom that I have today is embrace that support and utilize it, but also stay on top of it and make sure that it's good support and actually helps you rather than putting your energies to making it look right.
Monica Benney (Guest) · 18:06
Making it, making it look bright. Can you tell us more about what you're thinking there?
Vinay Nair (Host) · 18:10
Yeah, so, so obviously when I first started getting supports, I'd go, all right, it's got to all be about my brother because obviously he was the first one I was getting supports for. It's got to be about what he absolutely needs. I don't want to shave him, for example, and I was shaving him. And even to this day, if I say to him, oh, sissy will shave you, no. Because I would be the classic, um, cutting with a razor, because, you know, shaving yourself versus shaving someone else is a very different skill set. So I would— so he would have all these cuts all over his face, and then when he said no more and he wanted to grow a beard, thank goodness for that, because that meant I didn't have to shave him anymore. And— but I got someone to come in and support us with that, um, because it's not a skill set that I had. Um, and yeah, that was very different. That was the first time we had people in our homes. It was a, you know, the first time I had respite, as I was saying, was when I was pregnant and I needed to have someone look after him whilst I was in hospital having a baby. Um, and from that we then started to have supports in the home, and the first support was someone coming in and shaving him. I still did the the, all the other personal care, but just not having to cut him as much as that would break my heart. I didn't know how to do it. To someone who does it regularly, they didn't cut him, and then he just decided he didn't want to. I'll say he's got a full beard now and, and would not have it any other way. And, and I think he's got his full beard because my husband went through— and he's always looked up to my husband— he went to a period where he had a beard, so my brother wanted a beard as well. So, oh wait, you're fine. And I just get it trimmed now. I don't have to, don't have to worry about it.
Monica Benney (Guest) · 20:00
Does your son have a beard too?
Vinay Nair (Host) · 20:02
No, no, clean shave. I actually don't like beards personally. So every time my husband, and that's the first sign that their mental health's not so great is that their personal care will drop. So I'll say, you haven't had a shave for a little while. Is everything okay? Um, because neither one of them particularly wants a beard either. But my brother does. He loves his beard and wouldn't have it any other way.
Monica Benney (Guest) · 20:28
Now, you know, you talked about, you talked about mental health, um, and I know that a lot of carers struggle with their own mental health. Has there been a time when, when you had an experience like that? Because, you know, you've been caring for a number of years.
Vinay Nair (Host) · 20:43
Yeah, so I think that, I think that As I said, you know, going and studying and doing my social work degree, one of the things is, and I said earlier, that it was a journey of self-discovery. It taught me to reflect and it taught me lots of things. So I can't be giving advice to clients if I can't practice it myself. And I know that a lot of us are very good for not necessarily practicing what we preach, but I took it on, you know, as a camera, you do have to sometimes you know, put yourself first, and otherwise your mental health suffers if, if you're not in a good space. And I'm not saying that I'm always in a good space. I do have days where I'm down. Um, a couple of years ago, I, I had a period where I was critically ill and I was in hospital, had made all these arrangements in order to, to die, literally. And I would say that's probably the toughest time that I've ever had as a terror. I reached out to support services at the time. They said, yeah, we'll put you on a waiting list. I said, I'm dying now, not in the future, now. I need support now. And my family fell apart, for a bit of a word. I had support workers at home that weren't doing the right thing and were neglecting my brother. My husband was in the hospital with me, so it was during COVID when you weren't allowed to have visitors unless you were at end of life. Thankfully, I'm still here, so I'm sure my family are very grateful for that. But I would say that's where my mental health was probably the weakest. It's funny because my doctors and the nurses in the hospital said to me that, you know, I, you know, I was an, you know, an inspiration to them because I kept setting goals. So for example, I couldn't walk from, from more than about a meter because I was that ill. And I says, that's okay, every half an hour I'm going to— I had to blow on these, I think I blow on these, but these, these balls to get them up because I couldn't breathe. So on the half an hour I would do that, and on the hour I would get up and I would walk, even if that was 2 steps. And then, and then I would fall down and I couldn't do anything for the next half an hour, but I did that because I thought if I don't set those goals for me, and I wrote them up to keep myself accountable, and that's my training, you know, I knew that if I didn't set those goals, I wouldn't. But that doesn't mean I didn't have tears. And, you know, I remember the nurses, you know, doing an invasive procedure, and I just cried and cried. I says, I don't know how I'm gonna do this. I've got I've got a family at home I need to support. They're all crumbling, you know, there's no one there to do that. Yeah, so that was probably the time that I needed the support. But again, it was setting those tiny little goals. And, you know, if I didn't achieve them, because I would, you know, I remember the nurses helping me to have a shower. And for 2 hours after I'd had the shower, I couldn't move because I was just, the shower was just that exhausting. But I didn't beat myself up over it. I thought, no, practice what you preach, you know, get back up on that horse and do what we need to do. So yes, mental health can be a huge impact for a carer, but it's reaching out to your tribe. It is really about utilising those supports. Even, you know, have a good cry, it's okay. It's okay. And I can say, you know, 2 years on, it took me probably 12 to 18 months to get my family back on track because, as I said, they fell apart. But are they back on track? Absolutely. Do I still have rough days? Absolutely. Has it given me a different perspective in life? Absolutely.
Monica Benney (Guest) · 24:47
So something else I wanted to, uh, ask you, Monica, is about, you know, you've you've done that social work degree and, you know, I don't know how you did it, but, you know, you did it. And, you know, there are, I guess there are lots of carers out there and a lot of carers, you know, like, don't necessarily, you know, think twice about taking on that caring role because they're so giving and they love to look after others.
Vinay Nair (Host) · 25:14
And I didn't think twice about it. No, I'm 18.
Monica Benney (Guest) · 25:18
And I mean, at 18, to think about someone else other than yourself, I don't know if it happens anymore, but I'm glad you took on that responsibility, and your life is richer as a result of it. I can hear that in what you're saying. For those, because a lot of carers, I feel like they're often kind of running out of time to do things. They struggle to take time out for themselves. You've gone and done study, And, you know, as a result, you know, you've been on this journey of self-discovery. What would you, you know, what would you tell carers out there, you know, who haven't had an opportunity to do counselling or social work or psychology and, you know, have this opportunity to discover who they are and what keeps them going? What message do you have for them?
Vinay Nair (Host) · 26:08
So I would be telling them they need to reach out to carer support services. Cause that's, and that's how my social work degree came about, is that I was part of some of those carer support groups and because of my thirst and drive made me study. You gotta remember that I didn't study until, um, like I took my brother on in, let me think, 1990, I took him on, 1989, 1989, I took him on. I didn't study until 2000, so there was a long time between. And I chose social work because it fitted with, you know, wanting to make a difference. So I studied accounting when I first came out of school and thought, no, this is not where I see myself. And it was those experiences as a carer that I then used, and utilizing that lived experience, and social work was the closest that utilized it. That's why I call it a journey of self-discovery, because for a lot of students that's really hard work, whereas for me, you know, I was in the service system, I understood the service system, I didn't have rose-colored glasses, it was just a really good fit. But I, like, I've gone back to doing support groups, like I'm doing a writing group at the moment, I go to the monthly Kiera's morning tea. Yeah, I still do those things because it's about connectedness. Yes, I've made a profession out of it, but I also sit in the space that I need that same support.
Monica Benney (Guest) · 27:53
And, and, you know, and, and sounds like, you know, you're, you're okay to accept that because, you know, I don't think, you know, you're stepping away from the fact that, you know, you can also be just as vulnerable. And you're quite, you know, there's a sense of humility in, in what you're saying as well.
Vinay Nair (Host) · 28:08
Yeah. And, and when, when I'm in those whereas support groups, I don't go saying, hey, I'm a social worker. I'm a carer like anybody else. Most people in my, the support group that I go to would have absolutely no idea that I have an allied health background because it's not relevant.
Monica Benney (Guest) · 28:26
That's right. Um, and you know, so, so there's people out there, you know, they, they're, they're, they're finding connection through care support groups, you know, they're asking for help through other organizations. And they're, uh, you know, they're probably seeking counseling as well to, to look after themselves at different times. Is there, you know, is there still a stigma in being a carer or being involved in having a caring role?
Vinay Nair (Host) · 28:51
I don't know whether there's a stigma now. I think that there's still today, you know, the NDIS and the, you know, the way that the, the system has moved has made things better, but it's also, it's not holistic. It's like the amount of times I get told, you know, this is about your brother, or this is about your husband. I go, yeah, but what about me in all of this? You know, I get forgotten. I, you know, I'm not a machine.
Monica Benney (Guest) · 29:31
I—
Vinay Nair (Host) · 29:32
yes, I can take into account their disabilities, but is it okay for them to be, you know, violent? No, it's not okay. And, and I'm very clear about that. Like, I remember a psychiatrist that we went to, you know, Aaron was having lots of anger outbursts, and they says, oh, you just have to learn to live with us. No, I don't. No one has to learn to live with that. You need to treat and find out why that's there. If this is outside his— what was his normal behavior. Let's find out what that's about. We changed psychiatrist and went to someone who specialized in PTSD, and it was the best thing we ever did. So it's about not just accepting, you know, when the medical professionals— because I think they're all knowing and know everything— I'll be the first to challenge them and say, um, excuse me, but I'm the one that's doing this 24 hours a day. Don't tell me I just have to accept it.
Monica Benney (Guest) · 30:32
So there is, so there's, uh, there's probably a— what are you saying is there's probably a lack of a voice for, for carers more than anything else?
Vinay Nair (Host) · 30:39
It's not that there's no recognition because there is. So absolutely, if I say to them, yep, I'm that person's carer, they are absolutely respectful. So when I've had to take my brother to hospital, for example, for various different things, there's been No question I have been attended to, you know, in that space. But do I have a voice? Not necessarily. And I'm a really strong advocate. Like, there's times when I've taken our assistance dog into my husband when he's gone through ED for a medical condition because he's accident-prone. And I mean that in like, he like, he's very handy, so he likes to fix things. Then he'll injure himself and off to hospital we have to go for him to, you know, broke his finger on a gardening, you know, a couple of years ago, when I then have to advocate for him to have his assistance dog because we don't send the dog in the ambulance with him, or when he presents to ED, we may not necessarily because there's going to be lots of people moving around and, you know, they need to attend to him. So I'll bring the dog in later and I'll get told, no, there's no dogs allowed. I said, she's an assistance dog, she's I've got her coat on. Aaron needs her. Oh, but he hasn't asked for her. And I says, have you asked him, does he need anything? And they'll say, oh, he hasn't asked. I says, well, go and ask him. Oh no, we don't want dogs on— we can't have dogs on the ward. I says, she's an assistance dog. I says— and the last time we had that sort of a run-in was actually at the Royal Melbourne, and Aaron had fallen off a great height, you know, middle-aged men and Christmas fairy lights. We won't go any further in that conversation other than he fell and off he went to, to the Royal Melbourne. And I was at ED and he'd come in via ambulance and the ambulance officer paramedic said to me, can you follow in behind us? And we can't take, we won't take the dog 'cause if we have to do anything with Aaron, she may get in the way. Absolutely. I'll follow behind. So I get in and the nursing unit comes out and she says, no, no, can't have the dog. And I says, if she— if Aaron was blind, would you say that it wasn't okay for him to have the dog if she was a guide dog? I know that's different. No, it's not. Legally they are the same. And she says, well, we don't have dogs on the ward. And, and I tried to be very respectful, and I got to the point— and then I suppose it's for Aaron's benefit that, you know, I am that strong natured— and I says, You can either let the dog in or we'll end up with Human Rights. Your choice. I've already shown you the Disability Discrimination Act and that she's an assistance dog. I've shown you that she is an assistance dog. You're refusing her entry. You cannot do that. I'll go to Human Rights. You don't need to threaten us. This is your choice. They let the dog in, but I still have that to deal with in order for Aaron to deal— to be able to have his dog Yeah, yeah.
Monica Benney (Guest) · 33:38
And I think, you know, to be able to quote the Disability Discrimination Act, to be able to quote—
Vinay Nair (Host) · 33:43
That's what works with friends. Yeah, most people would just go, "Oh, oh, oh," and leave. Whereas I think that because I've been a carer for so long, I go, "No, this is—
Monica Benney (Guest) · 33:56
they have— he has rights just like I have rights." So what would be your message for, you know, to empower carers out there? Who feel like they don't have a voice and they feel like, you know, they're struggling?
Vinay Nair (Host) · 34:09
Find an ally. Find an ally.
Monica Benney (Guest) · 34:12
So through, through Carer Gateway or through—
Vinay Nair (Host) · 34:14
Carer Gateway, Carer Support, Carer Vic, you know, find an ally. If you've got support coordination in your NDIS, so if they've got any sort of NDIS package, you know, lean on your support coordinator. Get them to help you. Get someone to be in your corner, to have your back. And in my own business, that's exactly what I do. And I suppose that's our point of difference is that I have my clients' back and I have no qualms about calling out that sort of behavior because I think that is my job to do that. And yeah, and I would encourage any carer, don't necessarily go someone because they will beat you down. And I don't mean that disrespectfully because if you're making their life hard, then it isn't about, you know, it's about just exerting your rights and saying, the person has a disability and has rights. I'm a carer and I have rights too. Please respect that.
Monica Benney (Guest) · 35:15
Yeah, carers have rights as well. Something, something that's also unique about your caring situation is that, you know, you and your husband started caring for your brother not only at a very young age, but as a family. So, you know, you're still a family unit. You've got your son, you've got your daughter, and a grandchild coming into that family unit. And usually when I speak to carers, there's one carer caring for a family member. In this case, you know, you caring for your brother, your husband being involved in partly the care, I'm guessing.
Vinay Nair (Host) · 35:49
So no, Aaron's never been Leslie's carer. Career, so I'm very clear about that. So Aaron has—
Monica Benney (Guest) · 35:55
but they live under the same roof.
Vinay Nair (Host) · 35:57
They live under the same roof. Um, if Leslie was to require a shower, for example, Aaron won't do it, will not do it. He does not see that as his role. If Leslie had to go to an appointment, he would do it like any other family member would. So no different than if his mum needed to go on an appointment and someone needed to step in, he would do that. But if I said, Aaron, I need you to give Leslie a shout, not on your life. And what I have had to get him to support us, you'll go, can I subcontract that out? His words. He's not listening to me ever.
Monica Benney (Guest) · 36:30
So is that a discussion that you've had before? Because that's an interesting arrangement that you have there, which obviously, you know, which is clear boundaries, which is great because it helps keep your family unit working and functioning. Effectively, that's right.
Vinay Nair (Host) · 36:45
So he's always been our children's father, he's always been Leslie's brother-in-law, um, never Leslie's carer.
Monica Benney (Guest) · 36:55
Okay, okay. So, you know, for, for lack of a better comparison, I'm thinking of, you know, when, when, when a, when a family has a foster child in their home.
Vinay Nair (Host) · 37:05
Yep. So I'm working with a family that's got 3 foster children at the moment.
Monica Benney (Guest) · 37:09
Right, right. And that's a different situation, isn't it? Because the foster child has two parents. But in this case, you know, your brother, you know, you have a different relationship with your brother and your husband has a different relationship with, you know, with your brother. So because I was even thinking about, you know, a male carer, you know, probably responds to situations very differently to a female carer. Not that one is, you know, better than the other, but, you know, the responses are quite different. So is that, is that an arrangement that you discussed previously with your, with your husband?
Vinay Nair (Host) · 37:41
Just the way it evolved. So I suppose I always thought that when I took on my brother, it was— even though he supported that decision, it was my job, you know. He was my brother, so I needed to support him in whatever that looked like. Um, that doesn't mean, as I said, that my husband didn't do all the things that any normal brother-in-law would do for their, for their brother-in-law.
Monica Benney (Guest) · 38:09
Mm-hmm.
Vinay Nair (Host) · 38:09
Um, but there are certain things that he just wasn't in his wheelhouse, as we would say, you know, and showering and providing Leslie personal care was just not something that he would do. I also didn't directly ask him in those early years.
Monica Benney (Guest) · 38:27
Right.
Vinay Nair (Host) · 38:28
So I can't say that he would never have done it, but if I asked him today to shower Leslie, No, whereas my son would. He will go and shower Leslie. He will do all of those things. He will clean Leslie up if he's incontinent because he's grown up with it, right? So he has a different view. Um, so even though I look after our son and my daughter, they will go and do what needs to be done for Les, whereas Aaron still has those boundaries.
Monica Benney (Guest) · 38:58
Okay, okay, very, uh, you know Interesting. Now, where do you, you know, Monica, where do you see your caring role moving to in future years?
Vinay Nair (Host) · 39:09
As you know, as you grow and as you, you know, as I get older, I see us, you know, so part of the reason that, you know, that I stopped working was because it was just too hard, but it's now about reimagining that. As a couple of retirees and enjoying a bit of life and doing the things that, you know, revisiting some of those, you know, going to being Grey Nomads, you know, not as such, like completely Grey Nomads because our son is with us, but exploring our own backyard, enjoying every day for what it is. There will probably come a day when we can't when I can't sustain it, and I will cross that bridge when it comes to it. So still in denial about what that looks like, but I'm still, I'm only in my 50s, so, and I got through the, you know, critical life event and got through that, fumbled my way through. So I think I would fumble my way through until I went, I can't do this. So if I felt that any of their care was compromised, I'd say I can't do this. That's about having done it for so long.
Monica Benney (Guest) · 40:26
Yeah, yeah.
Vinay Nair (Host) · 40:27
And being okay to say I can't do this. And that's tough. And not many carers, until they've done it for a while, they're not gonna go, I actually can't do this. And that doesn't make them a failure. It just means that, you know, you've come to your limit, and that's okay. And, and respecting that decision, and that's where carer cancelling really helps. So in order for me to stop working at the end of last year, I actually went through carer cancelling to say, what does that look like? What does that mean? And I know all the answers, so they say, having the professional background that I've— but I let myself be vulnerable and go, well, what does this actually mean? And now I say, I don't know how I had the time to work before. Because I'm so busy doing everything else.
Monica Benney (Guest) · 41:18
And that's, you know, it's great to hear that, you know, you took the time to reflect on what that future might look like. And, you know, you make a great point there in terms of, you know, carers feeling like a failure if they can't do something that they used to do previously, right? Our situation changes, our circumstances change. We, you know, we need to understand that, you know, carers are human as well. They, you know, they have needs. They have requirements and, you know, and there's nothing, there's no harm in, not that there's harm, there's no requirement that carers need to put up this front of being a strong person.
Vinay Nair (Host) · 41:54
I always say, you know, and I reflect, if this was somebody else, what advice would I give them? And then take your own advice.
Monica Benney (Guest) · 42:04
Yeah. Yeah. That's a really difficult pill to swallow, taking your own advice. I often hear myself, you know, giving advice to people and go, that's really good. I should follow that myself.
Vinay Nair (Host) · 42:13
But it's giving yourself permission to, to be, as I said, for me, you know, admitting that I couldn't continue to, to work in the, in the roles that I was working in was huge. Like my, I, you know, one of my biggest goals was I, you know, I had to make sure that my family was supported and didn't want anything and you know, that could live the life that they deserve and all that sort of stuff. And I kept going, I need to have this amount of money in the bank, and then I need to have— when I'd achieve that, I'd need to have this amount of money in the bank, and then I need this. And so it was— I kept changing where those goalposts were. And then Aaron had a hospital admission, and I was pulled from pillar to post between home and work and the hospital. And I'm just going, I can't keep this up. And I took a sick day from work and just spent time with the boys, as I call them. I call them my boys. And I went, why don't I bust my chops? And I went in the following, following Monday and I resigned from my job. But I'd had that carer's cancelling. I had gone through I'd had a couple of sessions and then when I had that realisation that yes, I actually have to do this, it's not just a, oh, I should do this and nah, nah, nah, nah, nah, I took my own advice and that I had done with a carer counsellor and I had one more session after that after I resigned and I don't regret resigning.
Monica Benney (Guest) · 43:52
It wasn't that, you know, it wasn't impulsive. No. No, it was very calculated.
Vinay Nair (Host) · 43:57
Yeah, very considered. And putting myself into that vulnerable position of talking to a counselor, even in my head and talking to the counselor, I'm going, I know what the answers are, I should know all this, I'm a social worker, I know, I know, I know. But having to keep pushing that down and saying, actually, you're a person first and a carer and what are your values? Always coming back to my values. And I always say that my family are what I do everything for. So resigning and having a job like I had, was that doing what my family needed? No. My family needed me at home, and that's exactly what I do. And they tease me even now, like it's been 6 months, not quite, 5 and a half months. Um, and I said, I thought you said you were stopping work.
Monica Benney (Guest) · 44:54
You just get busy elsewhere.
Vinay Nair (Host) · 44:55
Yeah, yeah, that's right, just busy elsewhere. Yeah, but it's about enjoying myself and then enjoying being a carer and just sitting in that space. Whether I'll still be sitting in that nice comfy space in, in 12 months' time, I don't know. And I'll be the first to admit that. You know what? I will work my way through that journey and in 12 months' time, I'll either, if my business has grown bigger than I wanted to, then I'll employ someone. I will go back to what I, I'll keep reflecting and keep, like I will go back to counseling at the end of, towards the end of this year and go, all right, do some reflection. Yes, I could sit there and do it myself and I have the skills to do that. But sometimes it helps to have someone challenge you.
Monica Benney (Guest) · 45:44
Yeah, yeah. Sometimes it's good to get an outside perspective. It's good to get an outside perspective. Now, what, you know, last question for you, Monica. What would be a message, you know, you probably come across lots of carers in your groups and, you know, sometimes you feel like it's not your place to, you know, give them advice or whatnot. If there's one piece of advice that you might give to the people in caring roles out there, what would what do you think that might be?
Vinay Nair (Host) · 46:09
I would say that you can't be everything. Don't try to be everything and seek support. Don't be ashamed in seeking support. You cannot do this alone. Support is absolutely the key and like-minded support. Like, I had found that other carers have been a much better support than family, because I don't get it. Like, as I said, when I was critically ill, which my mother-in-law has only just realized in the last couple of months, I rang seeking family support and she said to me, oh, the cat hasn't quite settled in. I'm going, the cat? What about your daughter-in-law who never asks for help, is ringing you and asking you for help? Does that not say something? And I only just had that conversation with you in the last month or so. And she says, I had no idea. I says, if I'm asking for help, what does that say? She goes, but I couldn't have done what you do. I says, and that's all you needed to say. You didn't need to deflect and say that the cat needed you at home. So owning that, and you know, Aaron's siblings, as much as they're all behind me, every one of them would say they can't do what I do, and that's okay. Yeah, I don't hold that against them. Whereas other carers, you can say, yep, had a shitty day today, and they go, yep, get that. Because it's a very different sort of day than just having a normal shitty day as a carer, because it's not about necessarily about something that you've got control about. So you can have a shitty day that you've got control over, and you know, you're, you're your own destiny. But when it's somebody else not doing what needs to be done, or them having a bad day, you have no control over that. All you can do is be there and, you know, get them through it, no matter what that looks like. So it could be, you know, yelling and screaming, it could be, you know, interrupting the neighbors, it could be anything. Luckily we live plenty of space away from the neighbors, um, but it could be any, and you've got no control over that other than to go, all right, take a deep breath now, it's going to be okay. Do you want a cup of tea? Or do you just— let's go for a walk. Because that's all you can do. Yeah, you could just have to go, there's nothing I can do, I'm just gonna have to step away and let it happen, and then walk back in. Because you had no control. Whereas in your own life, you have control. You can decide that if you want to be shitty You can't control someone else being shitty, but if you're caring for that person and they're shitty, you've got to do something about it. Otherwise it could escalate and you could end up at the local police station or in the local hospital, or you could end up anywhere.
Monica Benney (Guest) · 49:01
Yeah, yeah.
Vinay Nair (Host) · 49:02
So other carers get that because they've been in that position generally where they are completely helpless about what's going on. All I can do is just stick it out. And if you're not a carer, you don't get that.
Monica Benney (Guest) · 49:17
Yeah, I do. You know, there's a certain sense of compassion, it feels like, that comes from one carer to another, right? That's great. That's really useful to get that perspective. Thank you, Monica, for taking the time. I really appreciate your insight and the wonderful work that you're doing. I'm looking forward to hearing your TED Talk one day about you raising a family as well as having a wonderful relationship with all the boys in your life.
Vinay Nair (Host) · 49:49
I wouldn't have it any other way.
Monica Benney (Guest) · 49:52
Well, I can definitely see that. And I know that time is of essence. So I wish you all the best for the future and everything that you plan to do. And I hope that our paths cross again.
Vinay Nair (Host) · 50:06
Not a problem. I will talk to you very soon. Thank you for listening to this episode of Australian Carers, a Kintsugi Heroes special series. Thank you to Colin Lilly for permission to use Broken as our theme music for this series. If you enjoyed this conversation, share the podcast with a friend and let us know by leaving a rating and review on Apple Podcasts, Spotify, or wherever wherever you get your podcasts. If you'd like to support Kintsugi Heroes and the stories we share, head to kintsugiheroes.com.au and follow the instructions to make a tax-deductible donation. Thank you for listening, and we'll see you next time.
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