Joe Coppi
Caring for a Partner with Dementia and for Yourself with Joe Coppi
A husband learns that his own wellbeing is not a luxury-it's the bedrock of good care.
Hear this story
Kintsugi Studio
Joe Coppi
A husband learns that his own wellbeing is not a luxury-it's the bedrock of good care.
Hear this story
Ten years ago, Joe Coppi's wife Joyce was diagnosed with early onset dementia. His first thought was not despair but strategy: how could they keep living fully, together, for as long as possible? That question has shaped everything since. Joe and Joyce moved to Geelong for easier access, stayed active through travel and shared pursuits, and built a life that didn't stop when the diagnosis arrived. The early years were manageable. Joe kept doing casual IT work, stayed connected to friends, and Joyce remained capable. But as her needs grew, Joe learned something that runs counter to everything carers tell themselves: the most important person in the caring equation is not the person being cared for. It is you.
Joe now manages a structured week of support, with carers coming on specific days and times, which gives him the freedom to row with a veterans crew, volunteer at Sailability teaching kids in wheelchairs, join the Men's Shed, and take time away knowing Joyce is covered. He sought counselling, even when he thought he didn't need it, and found it helped. He tackled the paperwork maze of the NDIS with help from Dementia Australia, rather than trying to navigate it alone. He built systems that make life easier for everyone: a one-page daily routine on the kitchen bench, a diary where carers write notes, photographs of each carer, labels on cupboards and drawers, sensor lights at night. When you make it easier for the carer, the carer gives better care.
Joe speaks plainly: if you do not look after yourself, you cannot look after the person you love. Next year, he and Joyce plan to travel to Italy and Croatia, hoping to walk through the Holy Doors in Rome as they have done every 25 years since 1975. The fracture did not stop them. It changed the shape of their days, but not their purpose.
“The most important person doing the caring role is not the person that you're caring for, but yourself. If you can't help yourself to help the person you're caring for, you won't be able to care for that person.”
“The first thing that came to my mind was, how are we gonna beat this? How are we going to extend our way of living to the fullest for as long as possible?”
“My first time going there, I thought, what am I doing here? And now I'm really enjoying myself. And it's changed my perspective as far as dementia is concerned.”
The hero, today
Joe stayed active with Joyce and kept doing what they both loved, because that was the life they had always lived together before the diagnosis and it did not have to stop. You have to look after yourself first. If you do not look after yourself mentally and physically, you cannot look after the person you are caring for. Get involved with organisations like Dementia Australia early on, not to figure it all out alone but to have someone walk you through the processes and paperwork that will otherwise pull your hair out. Do your due diligence when you bring a carer into your home: meet them, spend time with them, see how they relate to the person you love, and do not rush into it just because you have found someone. Build systems that help the carer do their job well, a daily routine sheet, a diary to track how your wife was each day, photographs, labels on drawers, because when you make it easier for the carer, they give better care to the person you love. Do not isolate yourself. Get into a Men's Shed, keep your hobbies, go volunteer, take time away knowing someone is looking after your wife, and stay in a group where you have people around you.
Yes. Joe Coppi 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.
Joe stayed active with Joyce and kept doing what they both loved, because that was the life they had always lived together before the diagnosis and it did not have to stop.
You have to look after yourself first. If you do not look after yourself mentally and physically, you cannot look after the person you are caring for.
Get involved with organisations like Dementia Australia early on, not to figure it all out alone but to have someone walk you through the processes and paperwork that will otherwise pull your hair out.
Do your due diligence when you bring a carer into your home: meet them, spend time with them, see how they relate to the person you love, and do not rush into it just because you have found someone.
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, Binay Nair had a chat with Joe Coppi, a devoted husband and caregiver who has spent over a decade navigating the challenges of supporting his wife through her journey with early onset dementia. Now, let's get to the conversation.
Joe Coppi (Guest) · 00:51
Good morning, Joe. Thank you for making the time for this recording.
Vinay Nair (Host) · 00:55
Oh, no problem, Binay. I appreciate the opportunity to have a chat with you.
Joe Coppi (Guest) · 01:00
So I've read a bit of your, about your story. Can you, for the listeners, can you tell us a little bit about, uh, you know, your caring role?
Vinay Nair (Host) · 01:08
Um, well, it started over 10 years ago when I, uh, realized that my wife was, uh, at the early stages of sort of a memory loss. And when we came back, we were overseas at the time, and when we came back, I went to our GP and he went through all the various tests and, uh, acknowledged that my wife had those early stages of onset dementia. At the time when we sort of went overseas, we were deciding of downsizing and moving, and I said to my wife Joyce, do you still want to move after 40 years in one place in Ringwood East? And she said, yes, I still want to move. So we moved to Geelong, and since then, you know, I've been looking after my wife, the early stage in the shop. And now we've got a number of carers that help.
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This conversation includes a decade of early onset dementia, choosing a place to grow older together, how to beat this, three years away as newlyweds, joyce accepts the diagnosis in the doctor's room and the early years were not heavy.
Joe Coppi (Guest) · 02:00
So you, you know, you said you were downsizing. Does that mean that, you know, you were also, you know, changing work roles? Were you and your wife working at that point in time?
Vinay Nair (Host) · 02:09
No, my wife wasn't working. She actually was doing a fair bit of volunteer work in the community at the Austin Hospital and also at Bayswater and Croydon. I was sort of part-time sort of working as a consultant from an IT perspective. Looking at the stages of retirement. So we're looking at basically a smaller place and a place that was easier to get access to. Where we were was quite hilly and steep, and as you get older, you don't want those steps. So we're looking at somewhere where it's much more— well, easier, easier to, I suppose, live in, a smaller environment. And Geelong sort of settled the place, less traffic. Like Melbourne is very hectic. We don't have any steps, it's all level. We've got a block to the bus stop, so it's very convenient for transport. A km and a half away from a shopping center. So we looked at all those sort of areas to make it easier as you get to an older age. Mm-hmm.
Joe Coppi (Guest) · 03:24
So you're looking for more, you know, access to facilities and resources.
Vinay Nair (Host) · 03:29
Correct. Yeah.
Joe Coppi (Guest) · 03:30
So that was an important aspect. It's been close to, what, 10, 12 years since you started caring for your wife. And, you know, since your life has, you know, taken a different turn. What has that journey been like for you? Can you Remember the first time, you know, you heard about the diagnosis and what was going through your mind and, you know, how have you adapted to that over the years?
Vinay Nair (Host) · 03:53
Yeah, to answer that, the first thing that came to my mind was, how are we gonna beat this? How are we going to extend our way of living to the fullest for as long as possible? And that time we've been overseas twice. We've gone caravaning, not around Australia, but in South Australia, in Queensland. We've done the Darling River Run, which is pretty hectic going along there, where we saw no caravan, no cars for 2 days. So we've still kept very active as much as possible. And that was really, the attitude is to be positive. And to say, okay, what have I been doing in the past? How can I keep on doing what I like to do together?
Joe Coppi (Guest) · 04:45
And why is it difficult for, I'm sure everyone doesn't think that way, staying positive. What was the difference in your life that helped you focus on that specifically?
Vinay Nair (Host) · 04:59
I think it's just the previous sort of lifestyle we had. We're always very busy and doing things. We were involved with athletics with the 3 girls we had. They're still active, their kids are active too. So we've always been sort of busy and doing things. We used to do a lot of holidaying, weekends and so forth. And I think that's sort of— it's our lifestyle, the way, the way we sort of have lived our life. And, and to be frank, when we got married All right, and which next year is 50 years, and then there's 50-year anniversary next year. When we got married, we got married on a Wednesday, on the Thursday we're on a plane, right? And we're overseas, and we— it wasn't like a normal honeymoon. We were away for 3 years.
Joe Coppi (Guest) · 05:48
3 years?
Vinay Nair (Host) · 05:49
3 years. Now, we worked in those 3 years, you know. I was a garbo, I was a dishwasher. My wife was a chambermaid. We ran a pub, we did anything that was going. So that was our attitude is just have a go. If you make a mistake, the only reason you made a mistake is because you've had a go. You will not make a mistake if you don't have a go. Yeah.
Joe Coppi (Guest) · 06:15
And what you're calling mistakes are probably an opportunity because to learn and grow from it, isn't it?
Vinay Nair (Host) · 06:19
Correct. That's exactly right. Cause you stand back and say, gee, I mucked that one up. Now how do I fix it? How do I improve it? Or do I just don't do that anymore?
Joe Coppi (Guest) · 06:29
And what was your, you know, I mean, you, I'm guessing you both were sitting down together at the doctor's office when you heard about the diagnosis.
Vinay Nair (Host) · 06:37
Yes.
Joe Coppi (Guest) · 06:37
And did you, you know, did you both sit down and have a chat about this? Or, you know, did you, I mean, there would've been a bit of, you know, a shock or a bit of, you know, I don't know, people, you know, people can sometimes struggle to come to terms with, you know, what they're hearing. You know, you might've heard that from other carers. Now, from a male perspective, I think, you know, I'm just putting myself in your shoes thinking as a provider, you know, knowing that the one that I love the most is, you know, it's got this disease or illness. What was going through your mind or, you know, how did you kind of relay that across to your wife?
Vinay Nair (Host) · 07:19
Well, what actually occurred was when I realized that there was a memory loss during our trip overseas, came back and I went to see Jim, our GP, um, and, uh, because I had a checkup, and I said, Jim, I think something's not quite right with the wife. What do I do? He said, okay, make the appointment and just tell her that, you know, I want to see her. So that's how it occurred, okay? So when he— when, when she went to see him, right, then he organized the other appointments and various scans. And, uh, full, uh, skeletal and brain scans and so forth. And, and then we sat down with him and he said, look, this is where it's at. You know, you've got this early stages. And she was, she was okay. Okay. So we're now, 3 of us were there in the same, same consulting room and, and she was fine. And then he said, look, I'll, I'll organize an appointment for Eastern Health. You're gonna see some specialist over there. And they confirmed the, the same sort of situation, right? And they said, can we have the whole family together? So all of us, uh, 3, our 3 daughters and ourselves, okay, we're all in one, one area, one room, okay? Um, and, and we were told the whole story and we accepted it. We all accepted it. So it was just, um, the situation was, okay, mum's got this, it's not gonna go away. How to go about working through it. And this is where she still decided to move, I don't know, from Ringwood to Geelong. She selected Geelong, right? That was her decision. I left it to her. And when, um, because of settlement between the two houses, we had a week's delay. We actually stayed in the caravan park. She drove her car, and when we got to Geelong, she said, I'm not driving anymore. She accepted it. She was quite capable of driving, but she accepted it. And, you know, I think it's the, uh, the awareness and acceptance that you say, okay, I've got this. How do I go about maximizing what I have got? The timeframe. Now, people have got cancer and some people say, you know, I've got 6 months. What can I do in that 6 months' time? Yeah. Um, and there's various people that have got very progressive dementia that, you know, last 1 or 2 years.
Joe Coppi (Guest) · 09:38
And, you know, so you talked about how your wife's attitude changed after she heard about the diagnosis. You know, you're, you know, I mean, you obviously went from being a husband and looking at retirement to, you know, to becoming a carer. What is it like for you when you, you know, when you started caring? Because you talked about some of the challenges that you faced, right, when you first moved to Geelong.
Vinay Nair (Host) · 10:02
Now look, it's, uh, I can't really, I suppose I can't really answer it completely, you know. Uh, it's a situation where I accepted the, uh, the role, but at the early stages it wasn't, you know, it wasn't very difficult, right? I kept on still doing my activities and, and, uh, during that early stages, even just before COVID uh, my wife's very, very, was very capable. Going out on her own still, uh, because we kept on being very active. So there wasn't a very heavy load on me at the time. I actually, um, you know, because of my network in IT, I also, um, got phone calls to say, look, Joe, can you come and help me in this situation? That's in computers, right? And so forth. So I did a bit of casual work on and off, so it didn't stop me from keeping in touch with my friends and contacts and so forth. Um, and I've still kept that, that sort of going. Now she's got more carers, right, helping her. I've got more time for myself, okay? So I've also done volunteer work, you know, um, down at Geelong Yacht Club, this thing called Sailability for kids that are in wheelchairs and so forth, yeah. So I've gone out in the boat and gone out with, you know, little kids and young kids and help them, right? Um, so I've been sort of active in some of those sort of other areas. Okay. Uh, I've also, to look after myself now that there's a moral load on my wife, um, I've joined the Men's Shed. Okay. And, um, and we're doing activities there.
Joe Coppi (Guest) · 11:41
Okay.
Vinay Nair (Host) · 11:41
So, um, because I'm involved in rowing, I, I'm, you know, do some cleaning down at the rowing club down here in Geelong. And it keeps me in the network, in groups. So the whole thing is, and it's very important for probably a, you know, a male, because we tend to say, oh, she'll be right, to keep that network going and not to isolate yourself and sort of be what, you know, one of the difficulties is loneliness. So explore your capabilities and your network. And don't, don't be afraid to say, look, um, you know, I need to go out with you, mate. Go for a beer or go for a drive somewhere. You know, I need a break. Yeah. Don't be afraid because we're, we're all, um, yeah, we're human and, and we all have issues, right? And whatever you've done in the past, try and continue that or expand that. There's a lot of volunteers required. There's a lot of volunteer work around, around Everywhere. There are people asking for people to help. Go out and help.
Joe Coppi (Guest) · 12:47
For often a lot of carers, they keep saying that they're busy doing their caring role and they're feeling exhausted and they're feeling tired. And I think what you're highlighting is that it's important to prioritize ourselves first and think about what our needs are, not only the person that we're caring for, but also what is going to keep us going.
Vinay Nair (Host) · 13:09
Absolutely. In fact, in fact, the most important person doing the caring role is not the person that you're caring for, but yourself. If you can't help yourself to help the person you're caring for, you won't be able to care for that person. So you've got to make sure that you're fit and, and well mentally, okay, and active. And that way you can do a good caring role for your for your loved one or whoever, your family or whoever it may be. But if you're not looking after yourself, if you don't look after yourself, how can you look after another person?
Joe Coppi (Guest) · 13:47
There are so many other carers out there I know that will be struggling to maybe organize their time or feeling exhausted or feeling tired or not being able to make time for themselves. What tips would you have for them? Because as you said, the first person we need to care for is ourselves.
Vinay Nair (Host) · 14:06
Well, one of the various, there's so many things around that they can sort of, uh, sort of, uh, make contact. But I think possibly the, the easiest and best one, and they're all around, around Australia, is the Men's Shed. Now, and, and, and that's a, that's a very simple way of making contact, uh, and going to the Men's Shed basically allows you to go there at your own time, wherever those days are. Have a cup of coffee, have a cup of tea, right, in a group, have a bit of a chat. And at first you may feel a bit embarrassed or, you know, reserved or scared or concerned or don't want to do it or whatever, but it's just like, it's just going down to a cafe. But my first time going there, I thought, what am I doing here? And now I'm really enjoying myself. And it's changed my perspective as far as dementia is concerned. Where I'm actually helping other older guys in The Men's Shed being active. So you'd be surprised when you sort of make contact with— well, as far as I'm concerned, The Men's Shed is probably a good starting point, the simple— how many other people are in a similar sort of boat or situation. And it only takes, you know, one morning to go and have a cup of tea and all of a sudden you realize you've got contacts, and then you can start thinking about yourself a bit more and expand from that. And then whatever previous activities and interests you've had, make sure that you, yeah, you continue with that. And that may help you look after yourself, because if you can look after— like I said, if you look after yourself, then you can look after that person you're caring for. So I'm actually quite impressed with the Men's Shed, um, and they're so, you know, um, they volunteer a lot of work to, um, well, people that haven't got homes and houses and furniture. And, uh, you know, there was fires out in around Ararat and Beaufort area, and we got all a lot of tools and things, and we put them up in the truck and sent them up there, and the farmers were very happy. So there's a lot of things there. And if you're a hands-on sort of person and you want to do something like that, well, there's another volunteer, Lars A. All right, you spend a couple of days, a couple of nights helping where they've had floods and fires and help farmers put up fences and things. A group there that's on the website and portal. There's a lot of activities these days if you're prepared to sort of just give it a go.
Joe Coppi (Guest) · 16:52
So, you know, so your main recommendation to people is just, you know, just get out and try something different, something to look after yourself and, you know, you'll be surprised by, you know, what might be in store.
Vinay Nair (Host) · 17:05
Absolutely. Just have a try of something. You may feel scared, reserved, and us blokes, we can do everything, we're tough, right? But down deep, we're not. Down deep, we're scared. And that's probably why we say we're tough on the outside, but inside, and you've got to be prepared to say, yeah, I am tough, but I need help. Or I need to do something so that I can help. Take it on the chin.
Joe Coppi (Guest) · 17:34
Do you think carers themselves need to access some sort of counselling from time to time to get that support as well?
Vinay Nair (Host) · 17:40
Absolutely. Yes, absolutely. In fact, that is actually, you know, I did that. There's, there's, um, there's counseling available through the government funding. Mm-hmm.
Joe Coppi (Guest) · 17:48
Through the Kerry Gateway.
Vinay Nair (Host) · 17:49
Yeah, that's correct. And, and, and I, well, I felt I didn't need it, but I did it. Right. And, and it was a good chat. Right. I went to 3 sessions and it was just a matter of having a, you know, a cup of tea and a, and a bit of a chat and it just takes a bit of load off your shoulders. And you feel, you walk out and you feel, yeah, had a good old chat. Um, and you know, hopefully you, you know, you're thinking a bit better and, and you've got a little bit less weight on your shoulders. And, um, yeah, at, at first I thought this is not going to help me, and I thought, oh yeah, look, I'll go, the government's paying for it, you know, um, it's there for a reason, uh, why not use it?
Joe Coppi (Guest) · 18:32
Yeah, I mean, that's, you know, so it was a chance that you took and you found it beneficial.
Vinay Nair (Host) · 18:40
Yes, absolutely. And that's what I suggest to any other carers. Um, if there are facilities there, it may not fit the bill 100%. Just give it a go. Just try it. See how that goes. You can, what can you lose?
Joe Coppi (Guest) · 18:57
Exactly. Exactly. That's a good tip. Now, you know, a lot of carers as well, Joe, they don't believe in that word caring or being called a carer. You know, sometimes their own, people's own stigma around being a carer. And sometimes, you know, the organization that they're reaching out to, sometimes they put a stigma on the word carer.
Vinay Nair (Host) · 19:20
Have you ever come across any kind of, you know, No, I haven't personally, but I understand that sort of word carer and it's sort of demeaning in a way. What I was, what could I say, lower class or lower, lower sort of work, or you're not gonna, you're not getting paid, or there's a lot of permutation to carer. Personally, I don't like the name, the word carer. You're, you know, you're, you know, you're helping somebody. You're not caring full-time for that person because the person's an individual and they do their own thing in a certain way, depending on what illness they may have. You know, some people are in wheelchairs and they need a bit of help sometimes. A lot of them help themselves, right? You're not caring for that person. You're actually assisting or helping that person, you know, with mental, you can't see when you go out shopping, right? That, that, that person's got some sort of illness. Um, but you're there as a helper and, and people around don't, don't know, but they are, there is, uh, a learning. I've noticed over the last 10 years when I started this journey, uh, how more awareness there is, uh, especially with my wife with now dementia, mental. She's not physically, you know, issues. You know, I'm just more than capable and walking and everything else. All right, you see in the street, there's nothing wrong with her, but mentally there's a lot of things wrong with her. And there's what I've noticed more so in, in supermarkets and so forth, when you go through the checkout, there's a lot more awareness of people these days of mental issues. So, um, you know, the, the word stigma on a carer. Yeah, still has that, and I think we will continue to have that one way or the other. Unfortunately, that's what we worked on. Carers, well, we care for people. We do care. We're a helper. We help people. So, you know, unfortunately, there is that stigma. Yes.
Joe Coppi (Guest) · 21:37
And along with the stigma, there's also the whole process of trying to apply for services or trying to make sure you're eligible, putting in applications and checking for eligibility and reaching out to different services and trying to find the right services. You had your challenge when you were going through NDIS initially, and that can sometimes also be troublesome for carers. Is that, is that right?
Vinay Nair (Host) · 22:05
Yeah, that's very, that's a very good point. Very valid point. Um, sometimes you pull your hair out, you know, one of the processes and the paperwork and documentation and the number of times you're on the phone waiting, waiting, and then you're told now you've got to fill this other form in. Unfortunately, that's what we've got, you know. Um, it is very frustrating. Personally, you just gotta nail to it and now keep going and push. There is a lot more helpers these days, and depending on the person you're caring for, where they slot in, aged care or disability areas or whatever may be those sort of areas, working with those organizations. And there are a lot of helpers. When we first started this journey at Dementia Australia, we had a lady that came and helped us in the early stage, because I had no idea about NDIS. And they took us through that journey and helped us. So if you don't know, and a lot of us don't know at the beginning, no idea at all, work on the association that you've got and get somebody there to give you a bit of a hand. To help you through those, um, you know, that sort of, uh, processes, the documentation, uh, and be open, be open about what you need and what sort of help you need and so forth. Um, yeah, so, and there's a lot, lot more helpers there in, in this process.
Joe Coppi (Guest) · 23:41
And so, so basically do not try to do it all by yourself. You know, don't, don't try to be too, uh, you know, expecting too much of yourself saying, you know, I should be able to figure this out by myself. I should be able to do this myself. I don't need help. So don't be rejecting of help that's available out there. That's basically what he's saying, kind of.
Vinay Nair (Host) · 23:56
Yeah. One little comment I'll say to that, and I agree completely with that. Don't, don't, don't be so knowledgeable. Be a user. Use everyone and anyone and, and whatever you can. Make them do the work for you as much as possible. Be lazy.
Joe Coppi (Guest) · 24:19
Well, I mean, as a user, we don't need to be too self-reliant on ourselves. We've got, as a carer, there's plenty of responsibility that's upon us at different times of the day. So when there's services available, why not use it? And you rely on a number of different services. You got involved with Dementia Australia. Is that important for carers to be involved with some of these organizations that are that are, you know, that, that can do, that do work with the, with the illness or the condition that the person is diagnosed with.
Vinay Nair (Host) · 24:54
Well, that's, that was my process. I sort of said, okay, my wife's got dementia. I looked at Dementia Australia, got involved, uh, got active in there, advocate for various projects and so forth. It's a, it's a, a learning journey. You're always learning something. As you go along. There's always somebody else that's done something for you that is similar and can help you. And there's a number of groups and you pass on different knowledge and information and processes and things that's happened to you. And the other person said, oh, I haven't thought of that one. So yes, whatever may be the case, get involved, be sort of active. And basically communicate and talk to people. Don't be an island to yourself. The more you can get information and assistance and help from people that have done it perhaps similar or whatever, the easier it is for you. And the more you can apply to the person you're caring for and help along the journey, and the better you are and the less less work you've got for yourself too, and more time to do things that you want to do. So get involved with any organization, any association that can provide assistance and help, and use it. They're there for a reason.
Joe Coppi (Guest) · 26:20
Good, uh, you know, good, good point. Good, good bit of information for people to, um, for people to think about. I was, I was going to, I was going to ask you as well, you know, in terms of, you know, carers also need respite, right? I mean, you know, there's services or there are people who come to your home and, you know, and take your wife to go and do different activities, right? And for you, it is more of a men's shed. Are there any other respite-based activities that you take part in, like a retreat or, you know, or going to training or?
Vinay Nair (Host) · 26:55
Well, I used to do some coaching, rowing coach. Um, but, but now I'll just do some, uh, now work down the rowing club, right, and active in a group there. Um, at times I've, like I said, I've gone off and done some volunteer work in the country, farmers. So I don't mind doing some, some activity and work on those sort of bases. Um, I've got a little project that I'm actually building, a pizza oven, right? Okay. I've never done anything like this before, but I thought, okay. And, and it's quite a big diameter. It's about 950 in diameter. So it's quite a big pizza oven and I'm building it from scratch. Right. So I've kept interested in other things that, that, you know, using YouTube. Yeah. Yes, absolutely. There's a lot of that Google, YouTube around and I thought, okay, I'll do a bit of that. You're, you're spot on, you know? Um, but you know, um, I've got a caravan and I've gone up on my own for a few days. I'll go and I do a bit of fishing. Just keep a lot of those sort of activities and interests going. So that's my outlet, I suppose, those sort of things. So anyone that's got hobbies, keep them going.
Joe Coppi (Guest) · 28:06
And you've got support organized for your wife while you're going away by yourself and doing these things, is that right?
Vinay Nair (Host) · 28:12
Absolutely. I'll just give you another example. I'll tell you exactly what what I've got. Um, you know, I've got a lady that comes in on Monday at 8 o'clock, okay, uh, until, until 4 o'clock, okay. At quarter past 8, I go rowing. I've got a, a veterans crew out on the water. We'll go for a row for about an hour, right, and then we do some cleaning down the rowing club, okay. On, on Tuesday, I've got a lady that comes a couple hours to do some cleaning. I go off to the men's shed, and then I've got another lady that comes at 11 o'clock get Joyce organized to get picked up by a personal trainer to go to a gym for over an hour. And then that lady comes back, okay, and looks after Joyce for that rest of the afternoon till 5. She can also stay overnight. And same with the lady on Monday. She can stay out, sleep overnight. Okay. On Wednesday, I've got a similar sort of thing. Another lady comes along and, um, you know, they go shopping or whatever may be the case, uh, this week. They had Morning Melodies. Now I'm not sure whether you're aware of Morning Melodies.
Joe Coppi (Guest) · 29:16
I'm familiar with it, yeah.
Vinay Nair (Host) · 29:17
Okay, well, it was a replay of Elvis on Wednesday. Okay, and then I have lunch at the hotel, and so the day's gone there, right? Um, yes, yesterday, Thursday, was a sort of similar to, uh, to Tuesday. Lady comes along and goes out with Joyce and Venus, they're our assistant dog. For a couple hours, and, and then the personal trainer comes along, picks Joyce up and takes her to the gym. And then the same lady comes back in the afternoon after gym. Today, same sort of thing, except the lady's got another interview. I said, don't worry about, uh, coming this morning. When you come, you arrive, and then she'll have Joyce for the rest of the day. Excuse me. And this afternoon, we've got another lady that comes from 2:30 until 5:00. I can stay until 8 o'clock. Now on Wednesday, the lady that came on Wednesday afternoon, I said, look, I need a bit of a break. I need to go and have a sauna and gym or have you. She said, that's okay. I'll organize dinner and I'll, what time do you want me to leave? I said, I'll be back by 8 o'clock. So there's that sort of, that was the week and that's pretty well a consistent week of support. So I can go away for 2 or 3 nights, no problems. And I've got the backup. People, the support people will help stay overnight, will cook. They know Joyce's routine, okay? And they're comfortable with taking her out or doing activities.
Joe Coppi (Guest) · 30:45
I mean, that sounds like a great plan in place. What would your recommendation be for someone who is listening to this and they just found themselves caring for a loved one and they don't have all these supports in place? They might I'm guessing it took time to get, you know, to get all this in place and all this together. Where would people start? Well, Google.
Vinay Nair (Host) · 31:09
That's how I started. There's a lot of companies that actually have carers and support structures. Look at Dementia Australia and what they recommend if it's dementia, if it's whatever other illness or activities or issues they may have, whether, you know, it's a blind, visually impaired person. Go to Vision Australia, see what activities they've got there, see what intros they can offer there. Whatever the issue is with the person to be cared for, go down that path and look at that organisation, association, and see what sort of they recommend as far as companies that actually have carers on their books. Have a chat, go and talk to them. Don't just on the phone, I've gone out to the office. I've gone out and spent time and looked at what the structure is like. And then try out one or two carers. Make sure that when the carer comes, that you are here and spend some time with them to, you know, give them up to speed with what they need to do and how you need help to provide to your loved one. So it's important that, you know, when the carer comes up for the first time, to be there and, you know, have a cup of tea, have a chat, see how, you know, she relates to the person you're caring for. You know, and then working from there. And you can't, you know, you can't be, you know, I suppose a person that will just, you know, straight away, oh yeah, I can handle this, I can handle that., and you may not get along with that person. You know, you may click, you may not click. So, uh, don't be in a rush. Don't, you know, don't, you know, sort of say, okay, I've got a carer, that's it. No, take your time. Make them aware that you're going to, you know, make it easier for them, but also that they need to understand the person and, and, uh, you know, get alongside and get along with that person.
Joe Coppi (Guest) · 33:13
So that's good information for people to think about. Basically, do your due diligence, make sure you test them out, make sure you try them out, ask the questions that you have, make sure you're entirely comfortable, and don't take what they say as gospel, basically.
Vinay Nair (Host) · 33:32
That's correct. And once you've introduced that, I've put together a one-page, a day in the life of my wife, Joyce. Okay. And from 6 o'clock, you know, the tablets, and I've got a tap timer which comes around and sort of activates the tablet she needs to take. All right. And feed the dog and then breakfast and, you know, shower and so forth and activities during the day and then the evening. So that it's there on the kitchen bench. Okay. I've also got a diary. Okay. So each carer makes a note of how Joyce was that day. So the next carer that comes along the next day can have a read, right? Oh, she, she wasn't very happy yesterday.
Joe Coppi (Guest) · 34:15
Oh, what?
Vinay Nair (Host) · 34:16
You know, or she had an accident or something like that. Okay. So they're all, they're all reading what's been happening and they're all up, you know, they're all on the same page. So something like, something like that. Yeah. To, that helps the carer. Okay. And it also helps you. So, you know, whatever, whatever you need from a carer's point of view, make sure that you've got that. I've got a laminator on one sheet of paper, okay. And in a, in a sort of virtually, um, you know, A4 size on the, on the kitchen. Then I've also got a diary, right, to make note. And so it's a prompter there. Uh, I also got a couple of, um, basically plastic sleeves. And in those plastic sleeves, I actually got on top of it, I've got today. I don't put Monday, Tuesday, Wednesday, I just put today. Okay. Make it nice and simple for my wife. And in that sleeve, I've got the photograph of the carer that's coming that day.
Joe Coppi (Guest) · 35:19
Okay.
Vinay Nair (Host) · 35:20
So I say, Joyce, oh, Joanne's coming today. There's the photograph. So visual. Okay. All right. Cause my wife's got that dementia, frontal temporal, um, and it's, it's, it's sort of vague sort of memory loss. Um, and so I make her aware who's coming. So, and she recognizes the faces. So depending on what the, you know, the illness or issue with that person, try and get the tools to help them. I've done this from that point of view., uh, for my wife. Okay. Now someone in a different situation, just think outside the, you know, the 9 dots or whatever, and, and look at what you can do to make it easier. I've put labels right on, on the, on the kitchen, kitchen, um, cupboard doors. Okay. The fridge has got a label, fridge. Okay. In the walk-in wardrobe, I've got labels there, t-shirts, shorts. Pants, socks, so, so that, you know, she can identify the drawer. Otherwise the drawer's all the same. And what's in the drawers. Okay. I've also, yeah, so things like that to make it easier. And when that carer comes in, I go through all that. You know, so when you introduce a carer, show them what you've done or what you've got to do, or they may have ideas too. Put them into place. I've also got sensor lights. I put in sensor lights at night so that when my wife gets out of bed, the light goes on. Okay. So the carers that I've introduced are all aware of this. It's not just coming into the house and saying, oh, okay, what do I do? So help the carer and you'll get a better carer to help the person you want to help.
Joe Coppi (Guest) · 37:05
So create a better experience for the carer and then they automatically will create a better experience for the person you're caring for.
Vinay Nair (Host) · 37:10
Absolutely, absolutely, absolutely.
Joe Coppi (Guest) · 37:14
Is that, you know, I mean, you've shared a great deal of detail, Joe, and thank you for going into that detail because I'm sure it'll help people. Is there anything that you want to tell people out there who are listening, who might be caring for someone, whether it's a husband caring for his wife or whether it's a son caring for their mother, whether it's a daughter caring for their father? Anything dementia-related, because you're such an advocate for those who might have an early onset of dementia. Is there anything that you would like to say?
Vinay Nair (Host) · 37:46
Oh, well, I think I've pretty well said it all. I think it's a journey. It's a journey and you've got to be aware that journey changes all the time. I've used, like I said, I've used Dementia Australia a lot. I've also put in a lot of time back into Dementia Australia for things that I've learned and my personal experience. Um, uh, and I think that the, the key thing is, um, you know, don't get depressed. Um, don't, uh, you know, don't sort of basically fall apart. Be positive and, uh, and just, just keep at it, whatever the situation may be. So there's really You know, the attitude is very important, um, to everyone, um, and, and you've got it. You've got that journey, um. There are a lot worse people in this world than yourself, a heck of a lot, uh. The people just, you know, losing lives and dying and wars and things and all that sort of stuff. And you've got to be positive, saying, well, you know, it's a journey. I've got to cross, I've got to, I've got to you know, bear that cross and do the best I can, but make sure you really look after yourself. That's really key. If you let yourself go, right, then, then, you know, you've lost— you've virtually lost the case. You've lost the, you know, the help you can give to that person that you love.
Joe Coppi (Guest) · 39:13
What are, what are you and your wife looking forward to next in the coming years?
Vinay Nair (Host) · 39:18
Um, I'm not sure whether that will, uh, would eventuate. But we would like to go overseas again next year. Now that's my high aim.
Joe Coppi (Guest) · 39:32
Any, any particular place?
Vinay Nair (Host) · 39:34
Well, probably go back to Italy where we, well, my history, we were refugees after the Second World War. And, uh, where we come from, it's not Italy anymore, it's Croatia. And we'd like to sort of, uh, do the, a bit of the, well, I've still got relatives over there, go and see some of the ones that are still alive. Um, and, and, um, just, uh, it's like a superstition. I'm not really religious as per se, but, um, when we went overseas in, um, um, '75 in Rome, they've got these doors called the Holy Doors. They open up every 25 years. We walked through them in '75. We're over there in 2000. We walk through them. The next one is next year.
Joe Coppi (Guest) · 40:23
Pretty fun.
Vinay Nair (Host) · 40:25
It's just one of these things that, you know, it's a bit of a fun sort of thing more than anything else. It may not eventuate. Realistically, we'll do a bit more traveling in the caravan, short trips, and see a bit more of Australia.
Joe Coppi (Guest) · 40:43
Thank you, Joe. It's been a pleasure just hearing about your journey and, you know, and And you being so positive about what's occurring and you being so proactive in your caring role are a great testament for men who are caring. And also knowing that just because you have a diagnosis of dementia doesn't mean that it's the end of the world. So I really appreciate your time and everything that you're doing for your wife. Your wife is really fortunate to have you in her life and you're very fortunate to have your wife in your life. I wish you the very best.
Vinay Nair (Host) · 41:19
Thank you, Vinay. Thank you for the opportunity to discuss some of my experiences and the travels that I've done with my wife with the dementia story.
Joe Coppi (Guest) · 41:29
Thank you.
Vinay Nair (Host) · 41:31
Thank you for listening to this episode of Australian Carers, a Kintsugi Heroes special series. Thank you to Colin Lilly for permitting 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 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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