Gary Watson
Experience the Harsh Realities of Caring for a Loved One with Gary Watson
A male carer for his wife with muscular dystrophy speaks openly about why caregiving is both brutally hard and deeply enriching.
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Kintsugi Studio
Gary Watson
A male carer for his wife with muscular dystrophy speaks openly about why caregiving is both brutally hard and deeply enriching.
Hear this story
Gary Watson became a carer for his wife Deanne when she was diagnosed with limb girdle muscular dystrophy. What started as a progressive change in their life in 2010 has shaped everything since: his career decisions, where they live, how he spends his time. For years, he didn't call himself a carer. It was just what he did, what you do when you love someone and they need you. But that word, carer, turned out to matter. It gave shape to his experience and connected him to millions of other Australians in the same situation.
Gary speaks directly about what male carers face that women don't. He's been called a legend for doing what women do without recognition. He's watched men leave when things got hard, using language like "I didn't sign up for this." He sees that as contemptible. Disability doesn't discriminate by gender, so neither should caring. He's also clear about what carers still aren't getting: adequate mental health support, kinship carers left without funding, money to cover basics. And he's seen carers shut out of hospital rooms, unable to advocate for the person they know best.
But Gary also holds something else true. Two-thirds of carers report positive feelings about their role and stronger relationships as a result. His advice is practical: don't offer help, just do it. Show up with a meal, cut the grass, take them out. For carers themselves, the shift is to ask for help, to let people see you struggling, and to do smaller versions of the things you love instead of nothing at all. You can't change disability, but you can change how you respond to it.
“Two-thirds of carers report having really really positive feelings about being a carer and very strong relationships as a result.”
“Female carers tend to be female. It's a traditionally female role, and unfortunately that's been perpetuated. Often, too often, men leave when these things get hard.”
“There's dignity and honour in being a carer. Whether you like it or not, you are doing those things. And we need to normalise these phrases.”
The hero, today
Gary believes that if you make a commitment to somebody and love them, you have an obligation to help them, and that commitment should never be conditional. Gary points out that carers often do not identify as carers because they see it as something they should naturally do, which means they stay hidden and do not access support they need. Gary has found that two-thirds of carers report positive feelings about caring and stronger relationships with the person they support, which matters alongside the real difficulties. Gary says the most practical help is not asking first, but doing it: showing up with a meal, taking the person out, cutting the grass, rather than offering vague assistance. Gary's approach to a hard situation is to ask what you have and what you can do with it, then do something smaller or different rather than nothing at all.
Yes. Gary Watson 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.
Gary believes that if you make a commitment to somebody and love them, you have an obligation to help them, and that commitment should never be conditional.
Gary points out that carers often do not identify as carers because they see it as something they should naturally do, which means they stay hidden and do not access support they need.
Gary has found that two-thirds of carers report positive feelings about caring and stronger relationships with the person they support, which matters alongside the real difficulties.
Gary says the most practical help is not asking first, but doing it: showing up with a meal, taking the person out, cutting the grass, rather than offering vague assistance.
Vinay Nair (Host) · 00:00
Kintsugi Heroes acknowledges funding that was made possible with support from the Community Broadcasting Foundation. Find out more at cbf.org.au. Welcome back to Kintsugi Heroes, helping people tell the stories they need to share so you can find the stories that you need to hear. In this episode, Binay Nair is joined by Gary Watson, a dedicated carer for his wife Deanne, who has limb girdle muscular dystrophy. Gary's world changed drastically with Deanne's diagnosis, leading him to advocate for carers on a national level. He joined Carers Australia and became the vice president, representing carers' voices in policy discussions. And through his journey, Gary learned to balance overwhelming responsibilities, financial strains, and emotional challenges. Today, he shares his insights on overcoming adversity with realism, honesty, and the power of a positive mindset. Enjoy this one with Gary Watson.
Gary Watson (Guest) · 01:16
Thank you, Gary, for taking the time to share your story. Can I get a bit of a background on who Gary is and what, you know, what Gary's known for.
Vinay Nair (Host) · 01:31
In context, I became a carer progressively for my wife, Leanne, who has limb girdle muscular dystrophy. You can find her story and her advocacy and links to her now radio show on leanneswheelife.com.au. And she has adult onset LGMD. We started to be impacted quite profoundly by this in about 2010 when it started to impact her ability to progressively lift things, then walk, then essentially do anything physically other than use her hands to operate a computer. So this has been a profound change over a number of years, leading to various career, lifestyle, and location changes for us. As this was happening, I started to take an interest in carers generally, what carers were. I had a long time before I really identified with the word carer. For us, it was just a different iteration in our life and something that we were going through together. However, I came to realise that the term carer had some very specific and significant meanings and was something that was worth embracing. I joined the board. I was asked to join the board of Carers Australia, which is the federal peak advocacy for the— for carers of people, informal carers of people, and became the Vice President of that. That organisation dealt at federal level to manage advocacy, policy development, represented all the state organisations for carers. It was a significant organisation controlling the funding flows to and from the organisations, and that was a very humbling experience, quite an honor. And I also chaired the working committee for the DHHS for Development of Carer Gateway, which is still the central hub for as a resource for all carers. And again, something that was quite a significant achievement. In business, I've worked for a long time in senior leadership roles, primarily in automotive, but also worked in academia. I was an Adjunct Professor of Strategy at Deakin Business School for 6 years and also an assessor content developer and teacher for critical thinking, leadership, and other subjects with Deakin Co. And those are the kind of subjects that led to my working with not-for-profits in governance positions and advisory positions. That all kind of comes together. That's, that's really who I am now. I'm Well, I've recently left work actually. Recently stopped full-time work after yet another transition, a change in Leanne's condition and a refocusing for us to make sure that we are giving ourselves all of the best opportunities to deal with Leanne's disability in the best possible way. Although I think that I shall be drawn back into advisory type roles quite quickly, just on a less demanding in a less demanding way.
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This conversation includes a different life with deanne, knowing when to step back from work, what male carers face that women don't, the legend problem, why people hide what they're doing and the person with disability gets help, the carer doesn't.
Gary Watson (Guest) · 04:42
It's, you know, it's good to hear, Gary, that, you know, you can, you know, you've found a way to step in and out of, you know, doing something beneficial and also knowing when you're, you know, when your family needs you. And that's something that I think a lot of carers sometimes struggle with.
Vinay Nair (Host) · 05:00
Vinay, we are exceptionally privileged and we recognize that I have had some fairly significant roles over the years and we are not in a difficult financial position, which is not the case for many carers. Many carers are in very difficult financial situations. They don't get funding from the government, very minimal funding from the government. We're talking about cohort of 2.6 million people in terms of carers across Australia. And of those, more than 850,000 are primary carers, that is, who provide the most informal support to a family member or friends. And, and, you know, the, the, the last market estimate of the economic replacement cost of that, if it were to be all replaced with formal market-based care, is over $77 billion. And that was in 2020. You know, whenever I read about the ballooning cost of the NDIS, for example, and the 200,000 workers that it now supports, you know, the cost is a pittance compared to the cost that's always existed, which is the opportunity cost of the work provided by informal carers. Apart from anything else, we now have caring as a profession, a paid position that many people can get NDIS funding for. Not everyone's as lucky as us, and were it not for that, there'd be a lot of people living very very suboptimal lives, if you like. So we have been able to make those choices, but we're also very privileged in being able to do so.
Gary Watson (Guest) · 06:42
Look, it is, you know, it is definitely, you know, a significant burden, or necessarily, you know, not necessarily a burden, but you know, when people take on that caring role, you know, like you said earlier, that people don't see it as caring, right? And I think that makes a— that also makes a big difference to how how different genders look at caring and how the extended family looks at what actually is happening, right? So could you speak from your role as a male carer because you would have seen the distinguishing factors between male and female carers?
Vinay Nair (Host) · 07:14
It's a very good point that you make, Vinay, and unfortunately and all too often, and I know this and Leanne knows this from her work in disability advocacy groups and connection groups, is that Female carers tend to be female. It's a traditionally female role, and unfortunately that's been perpetuated. Often, too often, men leave when these things get hard. They use terms like, I didn't sign up for this, which, if they've ever taken a marriage vow, is patently incorrect. And in my perspective, I guess the simplest way for me to put it is people are people. And if you make a commitment to somebody, if you love somebody, if you have family that rely on you, then you almost have an obligation to help as much as you can. And I'm not talking about being a grandparent babysitter here. That's a very different thing. Yeah, that's a personal choice. People want to spend their time as a— yeah, is that— but I'm talking about people who really need it, you know, uh, people who have disabilities, people who have no capacity to work. Some like Leanne, who can't do anything physical for herself at all and is completely reliant on physical support. Now, I personally don't think that there should be any differentiation between male and female carers. The unfortunate reality is they are typically female. I don't have the statistics to hand, but I would suspect that more than 90% are female. And I can't understand why, because disability doesn't discriminate in that way. And so why carers should discriminate in that way is beyond me. But I can tell you that from a personal point of view, that anybody who abandons somebody else that they've made a commitment to is contemptible. In my view, commitments are not conditional and they should never be. And look, there's no doubt, Avina, caring is very, very hard. But that's okay. All right. So disability, Leanne and I often say that disability is a thief, but it takes away from more than one person. We've had, from my point of view, we've had multiple career changes which have impacted me significantly in various ways. However, they've also provided great opportunities. There are a lot of things that you have to learn to be a carer. I've developed some medical skills that I didn't think that I have. I can operate equipment. I can, you know, I can manage people in pain and in difficult situations. It's very hard to watch people that you love suffer and die often. And you're so intimately associated with this that it gets very hard. And one of the things that we know about carers is that it doesn't just take away careers and hobbies and alone time. It takes away physical and mental health. Yeah, it can create, it does create higher levels of depression, drug and alcohol abuse, you know, but at the same time, at the same time, and I emphasize anybody that's listening, that if you're a carer and if you're feeling any of those things, go to Carer Gateway. There are multiple avenues to get assistance and it's okay to need it. And And, and, you know, there's a couple of important things that we want to share on that. Firstly, is that it's okay not to be okay sometimes, whether you're a male or a female carer, whether it's a person you're married to or a child. It's okay to seek respite and it's okay for you not to be the focus of attention. And one of the things that I think that women have been intuitively better at over the years is being less used to being the center of attention for the things that they do. You know, it's quite extraordinary over the generations, you know, hundreds of years, women have dedicated their time to being homemakers, raising children, caring for elders, looking after their community, their neighbors, their sporting, you know, all of that sort of thing. And they get no thanks for that. And if you get a man show up to a netball game on Saturday and help on the barbecue for an hour, he's some sort of legend,, right? And so, yeah, there's a lot of people that tell me I'm a legend, I'm amazing, I'm unbelievable, I'm just so phenomenal. If I was a woman, they probably wouldn't tell me that. And it really irks me, it really, really bugs me, you know.
Gary Watson (Guest) · 11:43
And so that's a stigma that exists, right?
Vinay Nair (Host) · 11:45
I think it is, you know, it's expected. If a woman does it, it's expected. If a man does it, he's incredible, you know, which is just nonsense. And, you know, these things that I'm talking about, about the mental and physical health issues, the, you know, all of that sort of thing. I have a very strong feeling, and I know this talking to other, you know, other carers who are women, that they're kind of just expected to work with that, just bear that burden, you know, whereas men, wow, man, you need some time away. You really need some. It's just, it's not right. And I'm sure it's because of our deeply embedded archaic kind of antediluvian perspective that that women do this stuff and men don't. It's just, it's not right. And I hope it's changing. I do. I really hope it is changing. And I think that Carers Australia over the years with their National Carers Week have done some outstanding jobs of using male carers in their highlight, the Carer of the Year kind of positions to try and identify. Just to say again, disability doesn't discriminate. So how can caring discriminate? I don't understand it.
Gary Watson (Guest) · 12:52
And it portrays, especially caring, as a very female-oriented task, which is definitely not the case either because men also care. But I think there is a— you talked just earlier about the— sometimes people feel like they see caring as something that they naturally do. So I think often there's this concept of these hidden carers, right? People who don't seek support because they feel like, you know, this is something that I should be doing. Or, you know, this is something that I would do for my partner, so why should I get a label of a carer? What do you, you know, what would you say to those?
Vinay Nair (Host) · 13:32
Well, interesting you should mention that, Binay. When I interviewed for the Carers Australia role, I didn't use the word carer and I said, you know, I'm helping my wife and And one of the interviewers, one of the board members that was interviewing me said, you don't identify with the word carer. Why don't you use it? I said, look, I think that it puts a label on us that I don't really identify with, that somehow I'm providing support for somebody who's incompetent. I'm not doing that. And she kind of corrected me and said, well, that's not how we view it. There's dignity and honour in being a carer. Whether you like it or not, you are doing those things. And we need to normalise these phrases. And I agreed with her. I learned to agree with her. And now I don't have no trouble at all using the word carer because I am. And, you know, in some ways, Leanne cares for me. She cared for me for many years in different ways, particularly as I was building a career and learning to be a better and different person. So there shouldn't be any stigma. Attached to that. You know, there's another interesting word that was heavily stigmatised and that was respite. You know, carers need breaks. They have to because otherwise you collapse. And this was actually officially frowned upon by government departments and many organisations. Do not use the word respite because it makes it sound like you need to escape. Well, if you can't call it what it is, what are you going to call it? You know, so some of these words, you know, carer, stigmatized. And still now, Vinay, you know, a mother— and I've known many women who have cared for and still care for children with disability, their own children with disability. And it's very difficult to get general people generally to view them as carers. Well, they're just mums, aren't they? Well, they're women with lives that they could be doing other things with. This wasn't what they expected. And why should it fall on the mother? Rather than the parents equally and the family equally. And why can't she be called a carer? Because she is. Because in some cases she'll be looking after that child for the rest of her life. Well, that makes her a carer because mothers normally raise a child to the point— well, parents normally raise a child to the point where they're independent, adult, and capable, and then hopefully the kids go and do their own thing. That's not the case. So, so this is another one of those kind of archaic perspectives that, well, of course she would, she's his mum. Well, yeah.
Gary Watson (Guest) · 16:08
And what I find interesting in that, you know, going back to the example of mum caring for a child who has a disability, the child with a disability probably will get support services, but the mum is not seen as someone who's got needs and who needs support.
Vinay Nair (Host) · 16:26
Right. It's absolutely, it's another great point, Vinay. And these things need to be seen for what they are. I need help taking care of Leanne. She gets help under the NDIS now. But before that, any help that we needed, we had to pay for. And people who couldn't pay for it just couldn't get it to the point where a lot of people couldn't even get wheelchairs, couldn't get the most fundamental support. There were government agencies, there was the East Knox Community Health and Equipment Programs and things like that. But it was very difficult. Court. And when a mum's entire life, or any parent's entire life becomes supporting a child with disability, they're a carer first and they ought to be recognised as such and supports ought to be made available. And so ought funding be made available because they can't work. There's an economic loss here and it's not— it's not replaced. It's not recognised well. And I think there's a lot of education on the broader community on this. You know, it's a little bit like an aging parent. Some cultures do this as an embedded part of their, of their ancient cultures, you know, Chinese, for example, others not so much. But if an aging parent goes to live with a daughter, I don't think that there's too many community members that would think that unusual. But if a son took charge of an aging mother, again, it's, wow man, what a guy, you know, geez, that's unusual. But yeah, I don't see why it should be.
Gary Watson (Guest) · 17:59
Since you got on the Carer Gateway, you know, since Carer Gateway's come about, there's a lot more organisations providing support for carers, you know, helping identify the carers and most of the support is, you know, some sort of respite, maybe some sort of financial assistance, some sort of, you know, yes, there's counselling being provided for carers. Is there, is there, you know, is there anything being missed as part of the support that's being provided to carers?
Vinay Nair (Host) · 18:24
One of the problems with that is that, you know, counseling, medical, mental health, legal services are discriminatory. They are absolutely discriminatory because they're underfunded by the government everywhere. Governments everywhere. And that discrimination orients itself towards people that have the privilege of being able to pay for private services. If you're in the public system and you need these services, you are trying to access heavily overworked, heavily overloaded, heavily under-resourced and heavily underfunded organisations. One of the areas that I guess this is broader than just carers that's missing out is properly adequately funded supports and services outside of the NDIS for carers who need these kind of advices. But there's also, you know, not all carers are the same. You know, kinship family carers, for example, are essentially in-family foster parents that don't get any significant, any real funding at all. Depending on what numbers you use, there's 20,000 to 40,000 of these, I think, in Victoria. That might be nationally. And essentially what it is, is that when a child's parents can't look after them, the child's placed with another member of the family, typically a grandparent. And I think this comes back to the same archaic attitudes. Well, how lucky is that? The grandparent can look look after that child. But the grandparents should be at a time of life where they're enjoying themselves. They've raised their children. They should be able to get on and do the things that they want to do, not be forced into that situation.
Gary Watson (Guest) · 19:53
Going through a cycle again.
Vinay Nair (Host) · 19:54
100%. And again, the supports are not there for them. They're not the financial supports and the material supports are not there for them. They've got a child who's struggling or dead. They've got a grandchild who's often struggling. And these people have to bear it all on their own. So there's some real gaps in those areas. So I think that generally, and I haven't looked specifically at this for a while, but things like carer's allowance is minuscule. Carers have difficulty gaining access to financial resource. There's a big problem with that, Vinay, isn't there? A full-time carer. My wife might have NDIS funding to provide some support, some equipment, things like that. It's fantastic. So we're not potentially entirely out, but how do we pay for food? How do we pay for the things that aren't covered by other government supports? How do I do anything that's fulfilling? Petrol, all those sort of things. And I think that carer funding, especially given the replacement value, is something that really needs to be Really needs to be reviewed.
Gary Watson (Guest) · 21:02
For example, you know, when Leanne has to go into hospital, because I know this with, you know, with carers of those who might have mental health needs, when they, you know, when they take the person who they're caring for to the hospital for a mental assessment or for support for their mental health, the carer usually gets, you know, gets sent out and say, you wait there, I'm going to talk to this person, you know, we'll figure something out, and then the carer's left in the dark. Have you found that with in your role?
Vinay Nair (Host) · 21:28
Not me personally. I have a law degree and I'm used to being in positions of authority and I spend a lot of time advocating for ourselves and we have the structures in place to ensure that that doesn't happen. But I could tell you countless horror stories of things like that, of situations like that. And it was something that we identified at Carers Australia as being a significant an issue with the NDIS initially, in that sometimes the person that was supposed to be making the decisions may not have capacity to. And if they hadn't appointed— if you haven't appointed somebody as a power of attorney, then sometimes it's too late. So I think that there is a significant issue where people are being asked to make decisions on their own and the carer's not being involved. Is there an informal carer? If you haven't got the correct legal structures and you can't advocate for yourself or the person doesn't have capacity, as you say, with a mental health issue, then you can have some significant problems. But, you know, other problems. Friends of ours, a friend of ours has a very significant disability, not similar to Leanne's, it's more advanced. She has to go to the hospital with disturbing frequency, and her partner and carer is often not allowed to accompany her. So she'll have to sleep on a chair in the waiting room. Rather than have— and she argues with the nurses and doctors every time. I can look after my partner better than you can and relieve the burden on the nursing staff. No, you don't have a formal appointment into that role. Get out. So that can be extremely difficult. It's not been a problem for us, but it is a problem for many, many people.
Gary Watson (Guest) · 23:14
You know, with your law degree, and if someone is listening to this, you know, who is feeling like they're being shunned out of their caring role and not being respected for the support that they're providing, what would you recommend that they do?
Vinay Nair (Host) · 23:27
Carer Gateway is specifically for informal carers. When we designed and developed it, it was specifically for informal carers. But anyone can use it. You can go on and use it. If you want to access the services, counselling and things like that, then you you need to demonstrate that it is related to your role as a carer, but anybody can access it and it is specifically for informal carers. So nothing to do with Centrelink, nothing to do with any of those things. To the best of my knowledge, it hasn't changed in that regard. Very inclusive and very easy to access. And it plays a great backstop role. As I say, my daughter-in-law is a counselor, and she often refers people to it when they don't have the resource to support them. So the second thing that I would recommend that everybody with a disability and their carer should do is make sure that they have the correct legal structures in place for end of life plan, enduring care plans, and powers of attorney, and including medical decision-making. I think these things are extremely important. Important to have set up. And part of it's about knowing how to advocate for yourself. And now this doesn't apply to somebody with a mental disability who may not have the capacity to do so, but other carers who can advocate for themselves by knowing what their rights are and by standing up and stipulating their unwillingness to surrender those rights can actually go quite a long way.
Gary Watson (Guest) · 24:59
Look, as a person from a multicultural background, I know that there are carers out there who are from multicultural backgrounds and for whom this whole caring concept and to be recognised as a carer is a very, very brand new ideology. And it also causes a lot of shame to be able to speak out loud about caring. So when someone reaches out to a service, do you think, is there anything that services can do or should be doing a bit more to make carers feel more welcome and to find it easier to put their hand up and say, hey, I'm a carer.
Vinay Nair (Host) · 25:33
I can't speak on behalf of the services, and we don't interact with carer support services again because we've been privileged enough not to. But I think that the word that you just used, shame, is a key one. And people find themselves in difficult circumstances for a variety of reasons. Becoming a carer for somebody with disability should be the antithesis of a shameful situation, but people may feel that they've gone from being self-sufficient with the direction and— because disability is not just the kind that's congenital, it's not just the sort that creeps up on you, it's not just a medical— these things can literally happen overnight. I think removing the stigma and the shame and so on, through more inclusion, more normalisation, really extends into a variety of other areas, whether it's racial discrimination, gender discrimination, sexual discrimination, or any of those sort of things is the same for disability and carers. And there's a term, ableism, that I hadn't heard until some time ago. And ableism essentially is racism but applied to people with disability. And services, I think, ought to And what does ableism mean, Kerry? Oh, sorry. Ableism essentially means that you are discriminatory towards people with disabilities. So being ableist really means not understanding the needs, the specific needs and requirements of people with disability. And part of this is about social discrimination. So, you know, if you think about discrimination, I guess it describes superiority. You know, I think that sexual discrimination is my thinking that I'm better than a woman because I'm a man. Racial discrimination thing. And it's the same as, you know, disabled people are not as worthy, not as worthy as people who are fully able, aren't deserving. And educational changes in that regard including of organisations is really important. I mean, we know that many organisations have institutional bias against, you know, people of socioeconomic status, people of sexual status, people of racial status and so on. And education, you know, what we call education of the inherent equity and equality rights of people. And, you know, equity and equality are not the same thing. And And these things need to be embedded attitudinally in our support organisations, I think.
Gary Watson (Guest) · 28:15
One last question I have for you about, you know, you talked about how carers have really low levels of wellbeing, right? And so, you know, if a carer's listening to this and they're thinking, you know, I'm running around like a headless chook, there's so many competing demands, I need to run the house, I need to look after the person I'm caring for, you know, and then you're asking me to make time for myself. What is, you know, what's one thing that you think, you know, if a carer is trying to prioritise their own wellbeing? Because I know that taking care of our own wellbeing means that, you know, the person who we're caring for has better support, has better care, because, you know, we are able to meet their needs better, right? But people don't often realise that they prioritise someone else, you know, before themselves. So is it training? Is it counselling? Is it connection? Is there something else that, you know, that carers need to be thinking of doing?
Vinay Nair (Host) · 29:04
So I'll answer that with a couple of different responses. One is that, as I said before, it's okay. It's hard to be a carer.
Gary Watson (Guest) · 29:13
Okay.
Vinay Nair (Host) · 29:14
It's also hard to be a person with disability a lot of the time. And it's okay to not be okay. It's not always sunshine and joy and happiness. It's reality that sometimes things are bad. You know, positive attitudes don't fix issues. Okay. And brightsiding doesn't help. You know, chin up, mate, you'll be okay is not helpful. So you got to recognize that sometimes and lean into it. And a part of that, to anyone else who's listening who's not a carer, is actually go and ask how people are, because carers, generally speaking, don't get asked. Okay. It's the person with disability does. How are you? Is everything okay? And the carer either makes you a legend or kind of get ignored. Closely associated with those things is to be is the offering and asking of help. And I was given a lesson many years ago about offering help, and that is don't offer it, do it. And if you can see that a person that you know who's caring for somebody else is struggling, if you've asked and they've answered you, gee, I could actually do with a bit of time, you know, just go over, send them out, take them out for a coffee, cook their dinner for them, cut the grass for them, do something practical. Don't ask, just do it. The reciprocal is for the person who is caring is to ask. You know, if you've got friends and they say, how are you? You say, I'm not okay. I really wouldn't mind an hour or 2 hours. Would you mind helping? Because, you know, you come back to the shame of it. Everybody wants to feel like they— I shouldn't generalise like that. I think that people generally want to be seen to be coping. You know, well, that's my wife I'm looking after. I love her. I can't be struggling. I come back to the comment about respite. No, everything's fine, Vinay. Everything's fine, mate. It's all okay. But if it's not, you got to say so. And there's no shame in that. This is hard. There's no shame in it. And one thing I really would like to emphasize, by the way, because I've been talking about the negative aspects, is something like two-thirds of carers report having really really positive feelings about being a carer and very strong relationships as a result. You know, if you can, if your relationship is working in a caring relationship, then you are killing it. You know, you're doing so much better than people with, yeah, look at mates of mine who go off and have weekends away and the girls have girls weekends and they, you know, they, he works and she works and they see each other at dinner time and that's a piece of cake, Vinay, like nothing hard about that. So people, a lot of carers, two-thirds report very heightened feelings of satisfaction and engagement. And sometimes that really helps, you know, when you're leaning into how bad things are at a particular time. You can also reflect that a lot of the time it's actually pretty good. And you know, avoiding toxic positivity is important. You know, Stella Young once said that all the willpower in the world wasn't going to turn a staircase into an elevator. And she's right. And but, you know, outlook is really important and we try and do everything that we want. Sometimes we have to do less of it. Instead of being able to go on holiday, we might just go out for a day. You know, that sort of thing is really important and to indulge yourself. Themselves is a really important part of it. So, you know, just to kind of recap, the first is to recognise that this is hard for both of you. Recognise that and then do what you can to try and mitigate it by asking for help and accepting it when it's offered. And also then by recognising all the positives that you have and making the most of them and trying to do more things on a smaller scale. And I think those are certainly things that have worked for me. The things that I see work for others in these sort of similar situations. And the last one is educate people. You know, one of the things that Leanne's done extremely well is educate people through her advocacy programs, through now her radio program on Pulse FM in Geelong. She's also educated our friends. So now our friends know that it's better for them to come here than us to go there, that if we're going out for dinner, they'll check the availability and then make sure that they've asked all the right questions, that if they're coming over, they call me and say, what can I do? Because I don't want you to have to do all the cooking while we're there. So a bit of education, a bit of sharing, you know, maybe it's the shame, Vinay, that you mentioned, maybe it's the stigma, but you, is everything okay? Yeah, yeah, yeah. What can I do? No, no, you're fine. You're fine. A bit of honesty in these sort of things really helps. You know, how are you? Actually, I'm struggling a bit. You know, it's been a bad couple of weeks. Leanne's been unwell. I haven't been able to get out. We've both been stuck in the house. We're not okay at the moment. This isn't great. Is there anything I can do? Yeah, bring over a beer and come and have a chat, for goodness sake. And honesty, you know, with your friends, your family, people around you helps everybody. Those are my personal philosophies and pieces of advice.
Gary Watson (Guest) · 34:30
So letting your guard down, let people see you for who you are because that's what you are when you're caring. So we don't need to be stoic when asking for help.
Vinay Nair (Host) · 34:40
100%. And there's probably a life lesson in that for everybody actually is to not be hiding behind a, you know, not be hiding behind a shed, you know, a bit of realism and a bit of openness and a bit of honesty and some empathy and some compassion and less isms of every kind, whether it's sexism, racism, ableism, you know, we're all gonna be better off, aren't we? Pessimism, you know, all of these sort of things. So yeah, I think they're very important points for now. They certainly work for us.
Gary Watson (Guest) · 35:10
Thank you, Gary, for that. That's been quite enlightening. Is there any parting comments that you would like to make for people listening?
Vinay Nair (Host) · 35:17
What I would say is that you can't change the things that you can't change, but you can usually change the way that you respond to them. And being angry or frustrated or closing down, and I understand sometimes people can't help that. You know, if you have depression, you have depression. You can't just, you can't get rid of depression by, with a sunny smile.
Gary Watson (Guest) · 35:43
Can't snap out of it. Yep.
Vinay Nair (Host) · 35:44
No, but, but a mindset of, okay, what have we got and what can we do with it and how can we make the best of it? Best to do something than nothing. You know, we might not be able to go to Europe anymore, but maybe we can go down to Queenscliff. It's a half hour drive. So let's do that. And trying to change that philosophy, I think, is, is to embrace the sort of feelings that those two-thirds of carers have that feel more enriched by the experience. Leanne and I are probably closer than we would have been, and we've had to confront some significant challenges, and so far we've overcome them. And those sort of things can be very encouraging. If you run a marathon, you probably feel pretty pleased with your physical endeavor. Well, Sometimes living a month being in a carer disability relationship is like running a marathon and recognizing how well you're doing at it is, I think, an important thing. So in summary of that, if there's any wisdom at all, it's understand that you may not be able to change a circumstance or a situation, but you can often influence what you do about it. It and how you choose to respond to it. And I think that those are the most important things that you can do because bitterness doesn't get you anywhere.
Gary Watson (Guest) · 37:18
True. I think that's a good place to stop this podcast. Thank you, Gary, for your time.
Vinay Nair (Host) · 37:28
Oh, thank you, Vinay. So it's great to have the opportunity to talk about it. I was really pleased to be able to be a part of your your program and your series. Thank you.
Gary Watson (Guest) · 37:37
And I'm sure, you know, carers everywhere listening, you know, if there's one thing that I would like for you, all of you to take away is that, you know, there is support available, right? And make sure you, you know, if you are caring, it means that you also need caring. And we also need to be compassionate with ourselves.
Vinay Nair (Host) · 37:54
That's very well put indeed.
Gary Watson (Guest) · 37:57
Thank you.
Vinay Nair (Host) · 38:03
Thank you for listening to this episode of Kintsugi Heroes. 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 you get your podcasts. If you'd like to support 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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