- Hello, my name is Kevin. I am a First Nations advocate with Dementia Australia. For more than 50,000 years we have come together to trade knowledge, to learn and to teach. Today, we joined to keep up that tradition. So with that in mind, we now pay our respects to the traditional owners, to Elders past and present, to those First Nations people joining us here today. [Soft Magpie Lark] [Soft Magpie Lark] - I still remember this phone call. [Soft Magpie Lark] I was standing in my back garden.
And I'm sure if you're listening to this, you've had some version of this kind of call at some point in your career. I just couldn't get through to my boss. I worked for a show called 'The Project'. And, sometimes they film the show in Sydney. Sometimes they film it in Melbourne. And they'd made a decision, to move more of the episodes back to Melbourne. And for me, I live in Sydney, that meant more travel. One of the days I was going to have to travel to Melbourne was Friday.
And, they wanted me to take a 10:00am flight each week to get to Melbourne. And the thing is, my dad had been diagnosed. He had moved to an aged care home in Sydney. And, I have a really crazy schedule. I travel a lot, doing shoots during the week, doing radio, doing all sorts of stuff. And Fridays, one of my hosting days, was the morning where I'd take dad for a swim. [Soft waves lapping] We'd go to the Bronte Ocean Pool. It was beautiful. [Soft waves lapping]
It was relatively early in dad's journey with Lewy body dementia and Parkinson's. And, the great thing about going swimming on Fridays, was that it was regular, it was routine. That was critical for dad. Disruption, change of habits, change of schedule. It was becoming such an ordeal for him. And so, we just had this little thing. Most Fridays, I'd go and collect him. We'd go for a swim, I'd get a coffee. Maybe he'd get something to eat. And then I'd drop him back to residential aged care.
[Airplane taking-off]
Getting that 10:00am flight, meant that I wasn't going to be able to do it. And I didn't have other days in the week where I had regular routine, like hosting. So, it was really going to cause a problem for me. And my boss just didn't understand. I don't hold this against my employers. I know it was probably difficult for me to fully explain. But it became a real fight, and I was really distressed.
And I think when I reflect on it, that's the moment where I couldn't really communicate or understand, how important the caring had become to me. And I also didn't understand the conversation I needed to have with my boss. And the thing was it was one of those conversations that just ratcheted up, it stepped up and up and up. My boss was digging in over this 10:00am flight. And I'm thinking to myself, it doesn't make any difference to you whether I fly at 10 or 12.
And actually for me, there's a huge difference. If I fly that little bit later, I can still take dad for the swim. We can have our moment together. He can have an outing, he can feel a bit more human and like himself. And to be honest, I also think, for my boss, it was hard to understand that someone that was male, that didn't have kids was saying, "I've got family obligations, and these are really important to me, and, I'm not going to put everything you are asking for, ahead of this."
In retrospect, I think I should have just sat him down and said, "Listen, this is what's going on for me, and I need you to understand." "I need you to make a bit of space for it." "I need you to accommodate it." And so now, when I talk to people who've got a loved one, a friend, a partner living with dementia. I say to them really clearly: "Have the conversation with your employers." "Read up on the rules, understand what's available to you as a carer, a support person."
Because actually there is a lot of regulation around this stuff. And if you have a good, thorough, meaningful conversation about it, I think you'll probably land in a better space than what I did. When someone you love is diagnosed with dementia, it can feel like the whole world just stops. But it doesn't. Caring for someone living with dementia, is challenging enough on its own. But you still have to look after yourself. Your home, your family.
It can also mean doing caring work on top of your job or your career. G'day. I'm Hamish Macdonald. - And I'm Jim Rogers. This is Hold the Moment, a podcast from Dementia Australia by people living with dementia and their families. Hamish, you know all about juggling and balancing full-time work, caring responsibilities, and your crazy schedule. What was it like for you? - Being honest, it was pretty tough I think Jim.
And, I suppose the other part about working in the media is that when you're on TV or radio, it's kind of showtime. You've got to deliver, and whatever's going on at home or in the back of your mind, has to be put to the side. And, I think particularly in the early stages of dad's diagnosis and then you know, his eventual journey through dementia. That was hard to do at times. You know, I'd be getting calls from the nursing home when I was on the desk ready to go on air at The Project.
Towards the end, dad became a bit disorientated. Sometimes he could use the phone, sometimes not. And I'd get phone calls from him while I was on air hosting. (- Oh my goodness) - And it was really hard to take because you were immediately drawn away from the role that you were doing. I was pleased that he was reaching out to me or that carers were reaching out to me. But I did stress and worry a lot that I couldn't give it the attention that I really wanted to.
You know, I'd be sending frantic messages in the middle of interviews with politicians about, (- Oh my goodness) You know, national politics saying, "I can't talk right now, but I'll call you back in 10 minutes." "Can you just let me know if dad is all right?" - That would have been hard and so distracting. - Yeah, a lot of pressure. But, I guess in the end I had to trust that the other supports that I had put in place for him were good and were reliable and that he was safe.
And I think that's something to remember. You can never do everything. It's about making sure that the systems are there, the supports are there, so that if there's a moment and there will be, where you can't step in or step up, that that person will be okay.
- Workplaces can be very flexible when it comes to raising children or looking at other chronic diseases, but they don't necessarily have processes in place that extend to supporting somebody who might be caring for someone living with dementia. - Kaele Stokes is the Executive Director of Services, Advocacy and Research at Dementia Australia. She's worked with countless families, so she knows how tough it is for new carers.
- You might end up playing the role of educator for your workplace around dementia and what the caring responsibilities might look like. And also how they might change over time. So, having upfront conversations with your workplace and reminding them of their obligations under disability legislation, et cetera, that if, somebody is living with dementia, it is classed as a a disability.
And so understanding that there needs to be supports to empower a family carer to continue their caring role, as well as working can be important. - But it sort of feels a bit weird, I found. Trying to talk to your employer about this, because it didn't feel totally justified. Certainly in my mind anyway. You know, my dad was diagnosed. We'd moved him into residential care, so it wasn't like he was without care or support. But, I was trying to give him routine in and around that.
And yeah, it really kind of fell on deaf ears in my workplace. What's the obligation of the employer? - Well, I mean, I think it depends on the individual employer and how they respond to situation and the level of flexibility that they are willing to provide. And it can be difficult, right? Because caring responsibilities can change quite significantly or suddenly. - And so are there certain obligations though on the employer?
- Well, it depends on what legislation is determining the, the workplace, whether there are particular regulations that are enforced. But, ultimately workplaces do have an obligation to support their workers and look at how they can support flexible work arrangements where it is practicable and possible to do. So, having those conversations as early as possible and as, as openly as possible is, is really important.
- What steps can you consider if your employer isn't all that supportive or friendly about it? - Well, often what we hear from family carers is that they will leave or change their employment. And that is sometimes easier said than done. But also getting legal advice where there are particular clear breaches of, of legislation or it's pressing up against those legislative requirements, can be helpful. But, ideally, you don't want to get to that point.
You want to have conversations as early as possible. And certainly the conversations we've had with families and carers and actually with people living with dementia as well, demonstrate that most employers are looking at ways that they can support somebody in their caring role. It's often that they just don't understand what's required to support somebody living with dementia.
They sort of tend to think of it as many people in the community do that, oh, you know, they're not able to make any decisions for themselves. They require full-time care. And that's a very simplistic view of supporting someone. - So some people, as you mentioned, do end up leaving work or find themselves having to take time out in order to provide care. Are there government payments supports that you can get access to? - Certainly carer support payments are in place.
Again, they can be, you know, challenging to translate into your individual circumstances and know who to talk to, but, talking to an independent organisation like Dementia Australia can help in terms of understanding where you can go for help. - What about a sort of longer term plan? Because I guess in retrospect I think, well, Why didn't I sit down and talk to my bosses about what dad was going through and how this might evolve?
And how initially it may only be here and there, that I need to be around, but that actually over time things are going to look different, and my contribution may change. Is that something you can do? Is it reasonable to approach it that way?
- It is absolutely reasonable. Yeah. And I think it, it does start to negate some of those more awkward conversations down the track where things happen in a hurry because you're trying to upskill and educate your employer whilst you're also learning this stuff for yourself, which can be really hard. - What about though, if you don't know that's what's coming? Because I guess that's, you know, that's the, the benefit of hindsight is you sort of think about how could I have done this differently?
I'm conscious that for many people listening, maybe they're at the start of a journey and you know, the horizon is not obvious. - It isn't obvious. We do have quite a few post diagnostic support programmes that are for families and individuals as well as groups to work through some of that, because it is a big mystery for a lot of people. Or you know, there's a sort of sense of diagnosis and then nothing else after that. So, understanding what sort of changes might occur over
trajectory of dementia. Understanding that it is very much dependent on the individual. The type of dementia that they have. The sort of person that they are. How the dementia affects their particular brain. All of those things are very much individual. But, some of the challenges that that people will experience will be pretty consistent. You know, workplaces generally are pretty flexible for other health conditions. Cancer diagnoses.
Children. Caring for, for kids. So it's, it's important that they are understanding and thinking about dementia in the same way. - It's such a common experience for people to handle caring for somebody and working. I recently met Wendy and she was caring for both of her parents. Her dad is diagnosed with Alzheimer's. And has been in residential care for seven years. While her mom lives with a mild cognitive impairment and has recently moved into residential care too.
Wendy's also a mother and a grandmother and someone who really loves her work. So she never wanted to give it up completely. And when her parents needed her help, she wasn't entirely alone. She and her brother divide and conquer, when it comes to caring. - I tend to do the on-the-ground stuff. And he tends to do the stuff that can be done remotely. So, in the beginning that might look like me driving mum and dad somewhere to attend an appointment or something.
And he might be using a product to, we use TeamViewer to look into mum and dad's computer when they need a little bit of assistance. And that's been fantastic. He came up with a great idea of having video calls with them on a weekly basis. So we would video call with dad on a Monday, beginning of his week, and we would have a lovely chat. But we'd also become aware of particular things that we needed to help with or were on the horizon.
And then we would have a call with mum on a Wednesday because that was halfway through the week. And then we could tap into, well, had things progressed? What did we need to do to support her, et cetera. And then outside those video calls, you've also got pre sometimes and posts sometimes to make sure things go smoothly. - So Jim, what does Wendy actually do for work? - She's working for a nonprofit as an accountant and she loves her work.
And she mentioned it to me a few times, but since she started caring for her parents, she's gone from full-time to part-time and that's allowed her to have a little bit more flexibility. - It actually means that I can do the self-care that allows me to be a carer and allows me to enjoy my career. So, if you are trying to juggle things too much, you just can't do it all.
So by structuring your week, by working part-time, you can actually allow yourself the space to do the things that you know you want to do and you need to do. What's tended to happen over the last few years is sort of an adaptation from when I was a mum and I was working part-time for caring roles and I had a sick child. And I've applied some of that as things have changed. And I apply it now.
So, I think one of the shaping is just coming to terms at some point with the fact that nobody can have it all. I was brought up in the generation where we left school and girls were told you can do everything you want to do. And that simply is not possible, unless you get incredibly lucky with a support system behind it. So I think each family unit makes decisions.
And so it's not just me making a decision, it's my husband making a decision about how we think our family unit can meet the things that we think are important in our lives. That then comes back to, well, it's important that I do have a role where I get professional stimulation and it's also important that I have a role where I can care for mum and dad. And especially as being an immigrant family where I don't have an extended family network. I am the only one on the ground.
- How much of your work life and the job that you do and the hours that you work, how much of that actually shapes your role as a carer for your parents? - I've picked a career where you have deadlines. - Yeah. - And you're caring. You have deadlines too, and they clash. So one thing I've done, there was an unrelated request from my employer, "Could I work Monday mornings?" And that was fantastic because at first I thought, Oh gosh, do I want to do that?
And I thought, you know what? It's actually going to solve my problem. And it also takes the pressure off the entire scenario of a medical appointment because you're not in the appointment thinking, I need this to finish in 20 minutes because I've got to get back to work. So you can actually be in the moment with mum or dad or both, and the specialist. Or you can be in the moment in the queue to Centrelink on hold for 40 minutes because you're not thinking, "Oh my God, I need to go back."
- Absolutely. It sounds as though organisation is the name of the game, and you've got so many hats that you are putting on and choosing which you want to prioritise, basically. - It's organisation, but it's also creating a scenario where you've given yourself flexibility. When you have, for example, you have to solve a problem with Services Australia. And it has to be solved by next Wednesday. And you also have a board report that has to be done by Tuesday.
Or the government wants the BAS return by the 21st of the month. Spreading your work life over for that week gives you the options to have a bit of a, I don't know, on one level it's a Gantt chart, but that sounds very fancy. It's just sort of these overlapping things that need to be done. - Yeah, I think it's important as well to remember with that 'to-do' list, as you tick them off, it's an achievement. Each thing is tick, tick, tick, done. You're getting somewhere.
Because it is overwhelming for anybody caring. - That is a very, very important point. Because you wake up in the morning thinking you're going to do a BAS or a this or a that at work and in your caring role. And it's really important to take a moment of reflection maybe during the day, at the end of the day. Because you may have thought you were going to do A, B, C, D. And you may have ended up doing M, S, Z. And you need to acknowledge to yourself that you did accomplish a lot.
It just wasn't what you thought you were going to do when you woke up that morning. And so it reframes it in terms of feeling devastated that you know, you can't do this and you're not coping, to going, well actually I was on that phone call and I discovered I needed to do this extra activity and I decided it was important. So the thing over there had to go. I have achieved a lot. - How'd you deal with it when it all seems to collide, sometimes?
- You just need to accept that that particular situation is as it is. For example, you just have to accept that the 1800 number for Services Australia, just does not give you an option to stay on the line. You can't get angry about it. You just have to go, 'Okay.' If it's just said "All our offices are busy, ring back another time." - Yes, that's true. - Just have to go, "That's what it is." So let's think about a different strategy.
And I think that's more, maybe you lean into professional strategies too and you go, okay, well if the computer suddenly failed and your BAS was due, you just have to think up a strategy. You can't cry because that's not going to fix... You've got to find a different way to do something. - I always say to my kids, you know, it's not about what what comes at you, it's, it's how you handle it. So really that is the structure. (- Breathe) You've just got to really breathe and take that on board.
Tell me about volunteering at your dad's care home. How did that come about? - It came about because dad was reluctant to go and do some exercise. And it was partly a function of him forgetting that he wanted to do it. And it was partly a function that it wasn't something that he was naturally attracted to. As an IT professional, he spent many, many hours at his desk doing some incredible things. And he's produced some terrific products for large corporations.
And so it's in his nature to sit there. And we needed him to genuinely want to keep his muscles and the blood flow to his brain and everything going. - Which is so important. - Yeah, to play to his strengths. Whilst some things are disappearing. To keep those things we can keep for as long as possible. And so, I was asked if I would entertain the idea of helping with an exercise group at dad's care location because if I went along there and dad wanted to spend time with me,
he was more likely to go along too. (-Very smart) That is, and that is in fact what happened. It was a bit difficult. Dad also has a condition called 'Hyperacusis'. And that is the opposite of deafness, I guess you'd say. So things are very loud. And, funnily enough that actually prevented us understanding dementia was playing a role in dad's life at first. Because when you want to recoil from noises, you tend to socialise less and you tend to promote the ability to have a problem.
That has swapped out that role now to a discussion group role. And that has been really wonderful. The discussion group for dad. We talk about all sorts of things and he really enjoys that. - So what keeps you motivated as a carer? - I look back at one particular instance as an example. I was unlucky enough to have the entire lovely experience of 'chemo' years ago, and dad, who doesn't really do the whole vomiting thing, accompanied me for an entire day into the hospital and sat with me.
Every time I think that it's too much doing what I'm doing, I go, you know what? He hung in there. (laughing) I'm going to hang in here too. - Tell me about the financial toll of a part-time job and what does that mean for your retirement? - It means currently putting as many dollars as I can into 'risk' to catch up my Super. It's interesting. Society thinks it's not gendered, but it is. It's still gendered.
And conditions have got a lot better for women, but there is still this underlying problem with women having missed out on Super of my age and now trying to catch up. There's the additional issue of how do you choose a role in your professional life that allows you to get the balance right?
And that sometimes means choosing between something that sounds absolutely fascinating and difficult and challenging, but not falling into a trap of finding something that's dull and boring and not stimulating. Because if the entire idea of going to work is to actually get some joy out of it and some personal growth and do some interesting things.
By swapping out of a role and going into something that you can clock off at a particular minute, you have to be very, very careful that you don't end up not liking your work at all. And so, one of the things I've been lucky enough to do, is finding myself in roles where some of the work I do is more procedural, producing some of those reports, but then projects come along.
So I think it's really important to, when you're looking at how you're going to need to change your work, to make sure that whatever role you take on has a capacity there for interesting and exciting. It may come and go, that's quite good sometimes. So for example, at the moment, I've got a really awesome challenge that I've been asked to do.
And I know for the next little while that that's going to give me a huge amount of stimulation that I might not have got in a role had I continued on my particular career trajectory. But I also know that it comes to an end at some point. We all need a project that we know we are actually going to finish. - Yes. - And that is not dementia. Because the project of dementia, if I can call it that crudely, is one that evolves and probably grows bigger at the moment.
- And you also have to be flexible to move with it and keep seeing the different changes and adapting your busy life, your work, (- Yeah) everything to that. - And I like that idea because that's then what you do with your career and you go, okay, I'm thinking that in the next year this is going to happen. So therefore, in this part of my, other part of my world, I'm going to make some sort of situation where I can adapt it. So, for example, Some weeks I will work more hours than other weeks.
And, you also have to be very careful about not getting ahead of the game, because you can get all enthusiastic about something, whichever part of your life it is. And you've just got to go, hang on a second, let's, let's see what we can do with this. Sick leave is a very interesting thing. Because if you're a full-time worker, I would dare to say that if you need to go to an appointment, it's understood that you need to go to an appointment, and you take carers leave or sick leave.
- Yeah. - As a part-time person, that's much more tricky sometimes. - It's accepted that it's in your own time, basically. - It is. And that's a really, really difficult one. It makes it difficult because then I'm trying to have sick leave to do those various roles and do it in that space that you said that's like, well, you don't work Monday afternoon. So it's that. But if the specialist rings you up and says, I can't do Monday afternoon, I've got to do some other time - You're in trouble.
- Then, then what do I do? And that's where it really comes down to having a really excellent relationship with the people you work for and them knowing that you do opt out sometimes to do those things. But then you will juggle it at a different time. And I think and hope that's where we've landed. And it's that trust. The trust (- Absolutely) between employee and employer. - It sounds as though you've got a lot on your plate, but you are nailing it.
It's such pleasure to meet you and I'm in awe of how brilliantly you're handling everything. - No, not brilliantly. And I think that's one of the things we need to recognise that we all as carers or people living with dementia, Or whoever we are, we all have a public face and a private face. And we're all very keen when people say, "How are you going?" We're all very keen to say, "Oh fine." - But we know we're not. - Yeah. - We're all like swans. - We are. That's such a good analogy.
Because we do what we can do and then we just have to have a healthy ability to just laugh at the rubbish that we can't deal with. - Definitely. - And just go, it is just rubbish. Going back to awesome culture at work, we have a programme where employees are encouraged to look after their mental health and their physical health. And so yesterday in the middle of my workday, I logged off the computer and I did half an hour of yoga.
It's fantastic initiative of our company and it pays massive dividends for all of us. Whether it be me with the dementia impact or whether it be anybody else with whatever. So I'm truly grateful for some of the things that are going on in our business culture, and I hope, and I wish that other people will find themselves in that same situation. Because I know it's very, very tough for some other people. - Thanks again to Wendy for sharing her story with us. There's so much good advice in there.
And I just love Wendy's attitude towards everything. She doesn't sugarcoat anything, but she doesn't let setbacks bring her down either. - Now, if you can relate to Wendy and you'd like a bit of help balancing your own work with your caring responsibilities, we've got a bonus episode for you. You'll hear from Kristen who works on the Dementia Australia helpline. - Kristen's great. And she gives really useful practical tips on all things caring.
- You can find that bonus episode on the Dementia Australia website or in your podcast app right now. And if you want to go even deeper, you can call the helpline yourself. It's available 24/7 every day of the year. - The number is 1800 100 500. Hold the Moment is a podcast from Dementia Australia produced by Deadset Studios. You can find more episodes and resources on Dementia Australia's website dementia.org.au. The show is hosted by me, Jim Rogers. - And by me, Hamish Macdonald.
The executive producers are Kellie Riordan and Gia Moylan. The producers are Madeleine Hawcroft and Liam Riordan. Production Manager is Ann Chesterman. Sound designed by Ryan Pemberton. A special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.