Hold the Moment
Hold the Moment is a podcast by people living with dementia.
Listen wherever you find your favourite podcasts.
Transcript
[Beginning of recorded material]
Jim Rogers: When you or someone you love has been diagnosed with dementia, what happens next?
Anonymous woman: I'm going through territory that I've never been through before. Why not have an adventure with it.
Hamish MacDonald: On hold the moment you'll meet people living with dementia.
Anonymous Man: The diagnosis doesn't define you as a person.
Jim Rogers: It's a podcast by people who really understand dementia.
Anonymous woman: And if I give that one person a bit of hope, I've done my job.
Hamish MacDonald: Search for Hold the Moment from Dementia Australia, wherever you get your podcasts.
[Title card: Dementia Australia]
[Title card: dementia.org.au/podcast]
[END of recorded material]
So, you’ve been diagnosed with dementia...what comes next?
There’ll be moments of grief, confusion and anger. But there’ll also be joy and hope as you navigate this new chapter.
Hold the Moment, a podcast from Dementia Australia, is full of real stories about life after a dementia diagnosis.
On Hold the Moment, you’ll meet people living with dementia and hear how they manage issues such as telling others about a diagnosis and getting your affairs in order. Plus lots of tips and strategies you can use in your life – from exercise, to getting around town, to sleep.
And you’re not alone. You’ll be guided by hosts Jim Rogers, who lives with younger onset dementia, and journalist Hamish Macdonald, whose father has dementia with Lewy bodies and Parkinson’s.
Introducing Hold the Moment
Transcript
Transcript
[Beginning of recorded material]
[Title card: Hold The Moment]
[Title card: Dementia Australia]
Jim Rogers: People pointed out that I'd had conversations with people or met people in my work and I couldn't recollect the meeting when they could. I'm very organised as a person and I was starting to realise that I wasn't able to file things where I could find them. So it was frustrating and a lot of the decisions I was were making were pretty big decisions. So you get them wrong and it makes life difficult. It wasn't till much later, at some point I went for a cardiologist appointment.
Nurse: Mr Rogers, the doctor will see you now.
Jim Rogers: And the cardiologist sat me down in the room and my phone was ringing. And it was annoying because it, it was ringing. I couldn't work out how to put it on silent or turn it off. So anyway, the call stopped and I sort of left it and then it rang again. And she said, you know, could you just turn your phone off And I just couldn't work out what I needed to do to stop this phone from making noise. And she said, you know, you experience experiencing this sort of thing now and again or have you? And I was saying, yes, like, these are the weird things that are happening. And from that point, she then referred me to a memory clinic.And when they said, unfortunately we can see that you have young onset Alzheimer's, you literally could have knocked me off my chair. It was almost an out of body experience. I just it's as though time stood still.
Jim Rogers: I'm Jim Rogers. I'm 57 years old and I'm living with younger onset Alzheimer's. This is Hold the Moment, a podcast from Dementia Australia full of real stories about life after diagnosis. But I'm not alone. I'm joined by my Co host and friend Hamish MacDonald.
Hamish MacDonald: Good day Jim. I've met heaps of people living with dementia through my work as a journalist. But all of this hit much closer to home when my dad was diagnosed a few years ago with Lewy body dementia. He'd been diagnosed previously with Parkinson's disease and I guess it was a bit of an evolution from there. Getting news like that. Jim Well, it's pretty big.
Jim Rogers: It is, it's huge. To be honest, it's shocking. Since getting that diagnosis, all I wanted to do was find out information and connect with other people, people who are experiencing what I am, because it's very isolating and I knew nothing about dementia, so I needed to find out as much as I could.
Hamish MacDonald: In many ways, that's exactly why we're doing this podcast together for Dementia Australia
Jim Rogers: and you'll meet lots of people who are living with dementia and we're going to explore some of the common issues all of us are facing.
Hamish MacDonald: So dad's living in residential aged Care now close to my siblings and I. We're all in Sydney. I got to see him probably at least once a week and when he's up for it, we go swimming in the Bronte Ocean Pool. It's something he loves and I enjoy too. He's also an outdoorsman. We grew up in the Snowy Mountains. Dad was always out rowing, cross country skiing, hiking in the mountains, but also running his pharmacies. It was really difficult for him to move away from the snowies. I know he misses it enormously, but he also misses his independence.
Jim Rogers: This is something that so many people I talk to feel. We're not going to sugarcoat how difficult things can get.We're also going to show the many ways you can live a full and rich life with dementia.
Hamish MacDonald: So in this series, we're going to meet Heather, who's staying active and learning new skills along the way.
Heather: Oh, certainly I have line dancing. My teacher only the other day she said you're all facing the wrong way. And they said, oh, and Heather is too. And she said to them, and Heather's got an excuse.
Jim Rogers: And Anthony, who isn't shying away from dating with dementia.
Anthony: Oh, La, La I, I clicked straight away and then we started texting and then talking on the phone. And then I told her my diagnosis.
Hamish MacDonald: And then there's Pat facing the scariest part of it all with a smile.
Pat: I'm very lucky because I was diagnosed early because that allowed me to do what I did to get my I call my active dying plan out of the way. And now I'm on my active living plan and my adventure with dementia.
Jim Rogers: Hold the Moment is full of helpful tips and stories that we hope you might take some comfort from.
Hamish MacDonald: All right, Jim, you ready to do this?
Jim Rogers: Let's do it. Let's find out how to live your best life with dementia.
Hamish MacDonald: Search Hold the Moment wherever you listen to podcasts.
[Title card: dementia.org.au/podcast]
[END of recorded material]
“You could’ve knocked me off my chair. It was like time stood still.”
Jim Rogers was blindsided by his diagnosis of younger onset Alzheimer’s disease in his 50s. He didn’t see a dementia diagnosis coming, and yet it changed almost everything.
The way you sleep, exercise, travel around, and even how you interact with your loved ones will change after a diagnosis. So how do you even start to process all these changes?
On Hold the Moment, you’re not alone. Join Jim and his co-host, journalist and broadcaster Hamish Macdonald whose father has dementia with Lewy bodies and Parkinson’s, as they learn how people with dementia are managing their changing circumstances.
We’ll also bring in a few experts along the way for advice on the especially tricky stuff, like getting your legal affairs in order.
Follow Hold the Moment wherever you get your podcasts so you don’t miss an episode. And share it with anyone you know who has a dementia diagnosis or who knows someone who does.
Episode 1 - Where to from here – What to do after being diagnosed with dementia
Transcript
[Beginning of recorded material]
Kevin: 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.
Jim: I think generally, I've always been, you know, very focused on trying to get ahead in life, so always been involved with property, and very busy lifestyle. Renovating properties, building properties.
Hamish: This is Jim Rogers. He worked in the fast-moving world of residential property.
Jim: So, it was a very busy environment, very full on, big team environment, a lot of responsibility, a lot of, you know, information to process daily. It was full on, but that's the way I like it.
Hamish: As you can tell from his accent. Jim's originally from the UK but relocated to Australia in the two thousands.
Jim: Yeah, the offices that I worked in were amazing, very busy, very bubbly, great team atmosphere, a lot of people, a lot of phones going, a lot of meetings taking place. First started noticing the symptoms at work, often in meetings, or when I'd forgotten that I'd met people.
Some colleagues were noticing that, you know, I couldn't recall meetings, couldn't recall instances where I chatted with various people, as though I'd gone and had a face-to-face meeting with that person, and then suddenly, you know, I have no recollection of them. It was quite daunting to me, and I just felt a little bit overwhelmed as to what's happening. I was starting to think, is there some side effect? I was having a medication for high cholesterol, and I was thinking, is it a side effect of that? And I was researching stuff like that.
Hamish: So, Jim said to his GP,
Jim: "I'm having issues getting confused, constant fogginess, people were talking to me sometimes, I felt as though the conversation wasn't registering correctly in my head." And it wasn't till much later, at some point, I went for a cardiologist appointment.
Medical Receptionist: "Mr. Rogers, the doctor will see you now."
Jim: The cardiologist sat me down in the room, and started to do whatever she was going to do, you know, they do heart rate or whatever it is they're going to do. And my phone was ringing, and it was annoying because it was ringing, I couldn't work out how to put it on silent or turn it off. So anyway, the call stopped and I sort of left it, and then it rang again and she said, "Just turn your phone off." I got all flummoxed and stressed because I couldn't do it, and I just couldn't work it out. And I ended up asking her, "Can you tell? How do you?" And she wouldn't, and she said, "It's fine, take your time, and just see if you can work it out.
Hamish: The cardiologist said to Jim,
Jim: "Experiencing this sort of thing now and again?" And I was saying, "Yes, these are the weird things that are happening." And from that point, she then referred me to a memory clinic who started doing more advanced testing.
Hamish: Next thing, the neurologist's office calls Jim.
Jim: And they did say to me, "Would it be possible for your husband Tyler to be there with you for that meeting?" Which sort of triggered my mind a little, thinking, sometimes when they say can that person be there with you, maybe it's not good, but you still don't expect it, and I was truly hoping that they were going to say, "Look, you've got some sort of cognitive issue. We can do this medication, we can do this. Let's get this done, we'll sort it."
Hamish: But instead, the neurologist said,
Jim: "We reviewed your PET scans, et cetera. Unfortunately, we can see that you have younger-onset Alzheimer's." It was almost an out of body experience, I just, it's as though time stood still.
Hamish: This is Hold the Moment, a podcast from Dementia Australia full of real stories about life after diagnosis,
Jim: Because I've never met anybody with Alzheimer's, I didn't know anything about Alzheimer's, I didn't want to know anything about Alzheimer's, so it was pretty hard to hear those words. I'm Jim Rogers. I'm 57 years old, and I'm living with younger-onset Alzheimer's
Hamish: And I'm Hamish MacDonald. Across this series, we're going to be covering a handful of the big changes that come along with a dementia diagnosis. Things like your sleeping habits, your close relationships, your exercise routine, how you travel around town, or even further afield than that.
Jim: And along the way, you'll meet a whole lot of people living with dementia who are tackling these issues. In this episode though, we are talking about where it all starts with your diagnosis. I'm going to tell you a bit more about my own diagnosis, but Hamish also has a very personal connection to dementia.
Hamish: Yeah. So, I've interviewed lots of people with dementia in my work as a journalist, but all of this hit much closer to home when my dad was diagnosed a few years ago with Lewy body dementia. He'd been diagnosed previously with Parkinson's disease, and I guess it was a bit of an evolution from there. So Jim, it really does sound like you've been on quite a ride, my friend.
Jim: Yeah, you could say that Hamish, you could definitely say that.
Hamish: But the ride didn't exactly start with your dementia diagnosis. Can you just tell me a bit about your life up until now or until that point?
Jim: I was married to my wife for nearly 10 years, and we had a great relationship, and three beautiful kids from that. And unfortunately, my wife passed away from cancer, which was a terrible time. Then sometime later, when I met Tyler, I just had a connection with him, and yeah, things just happened from there. He's been in the children's life for over 20 years now, so they're very much used to having Ty in the family. And so yeah, he's Poppy to the four grandchildren, and very lucky.
Hamish: You are obviously someone that, throughout your life, had exercised a lot of control over your own destiny, you'd moved countries, you'd built families, and businesses, and buildings, and homes. Confronting a situation where you couldn't really seize control in that way. How did you handle that?
Jim: I remember, even with my wife at the time, when she was diagnosed with her cancer, and they said, "Go away and try, and we think you'll be okay, but move along, and try and enjoy life." And I remember her desperation of that, and how quickly she passed away from there. And I think when you've watched that with somebody as well, it's very daunting to have the unknown. You don't really know, there was no rule book.
Hamish: And could they give you those timelines?
Jim: Not really, because the one thing they really emphasised to you is that everyone is different. Every single person with dementia has a different story to tell. There's a lot of that anxiety that goes with it, I think. And you just, you don't want to really, you just don't want anything to do with it. You just wish I'd never heard of it, wish I'd never been diagnosed with it, just don't really want to know. But it's there now, the elephant's in the room, so you try to just turn it into a positive and go, "Okay, well I've got this future ahead of me now, utilise the time, make the best of it, have fun, be positive, try and fulfill all those things that you thought you could put off till your later years, bring them forward a bit.
Hamish: That initial 24 hours after you got the news was a big 24 hours in your life and the life of your family.
Jim: It was.
Hamish: Why?
Jim: Because we were desperately waiting to find out news, what was happening with my daughter, Daisy and Mario, her partner, they were having their first son. And so, you know, we were on the sidelines, they were going into the hospital, ready for her to give birth to their son. And so, we had this diagnosis the day before she gave birth. So, of course, it was a very emotional time to have a new grandson, but in the background, it was also very difficult because you had this diagnosis that was being put on the table. And so, we really had to try and park that, and focus on the joyous time. Not what was happening from that side of things.
Hamish: Could you?
Jim: Yeah, I think so. Yeah, we did because it was so exciting to see a new baby, and go in and hold him, and see them, and know that she was safe, and that it was all, and then sort of after the event, and when we came home, the severity hit us again. And especially in the quiet of night when it's the early hours and stuff, it really started to become impactful on what does this mean? What does it look like? Of course, Dr Google isn't the greatest place to go and look, but you start to see all these things that are happening to people, and you know, you draw on their experiences to see these people who've come from being perfectly fine to unable to, you know, look after themselves, care for themselves, make decisions, those sort of things. It's pretty scary, scary territory.
Hamish: What strikes me, Jim, is that it was actually your cardiologist, a heart specialist, who had picked up on your symptoms, and not your GP. What do you make of that?
Jim: One really prevalent thing that happened with the GP was after the diagnosis, Ty and I went to the GP for something afterwards, and I said to the GP, "I've been diagnosed with younger-onset Alzheimer's." And he was quite surprised, and he was reading the notes and stuff, and he actually said, which we couldn't believe during that conversation, "Oh well, it's not like it's going to kill you." Which we were both really gobsmacked at the time. We jaw dropped, and felt as though he really wasn't sure about that area at all.
And since, you know, of course we know a lot of stuff now, but at the time it, it felt a little trivialised by the GP. So, you feel sorry for people that are trying to get to a diagnosis if they're facing that type of thing? I do think sometimes there is a lot to do with Alzheimer's and dementia that a lot of generalised practitioners don't really know about. You know, and of course, as we know, it does lead to your death at the end of the day.
Hamish: You were diagnosed with younger-onset Alzheimer's. What does that mean?
Jim: So, basically anyone diagnosed prior to 65 is classed as younger-onset. So usually, Alzheimer's is associated with the ageing population. Somebody that's getting older and their brain is degenerating slowly. It's something that's found early on. So yeah, a form of younger-onset is literally Alzheimer's that starts at a time in life when you should really be at the top of your game, or working, or with a family, or, you know, a busy life. It's not at the time of life when you would generally assume it happens when you are older and you're quiet. So you sort of become older quicker.
Hamish: And do you feel like that's what's happened for you?
Jim: Yeah, I feel as though I'm fighting to just stay who I am, and stay full of vitality and, you know, have plenty of conversation, and meet people and be upbeat. But I feel in myself, I get lethargic, I get overwhelmed, tired, and sometimes, can't focus so well or if there's too many people talking, I struggle to focus, so I feel all these things, and last night, we went to the theatre, by halftime, I seriously just wanted to go home and go sleep. I feel as though I'm at stage where you push, you're pushing because you want to make the most of what you have right now before you can't have the option to push.
Catherine: My name's Catherine Daskilakis. I am, I forget how old I am sometimes.
Hamish: I think you're 57.
Catherine: I'm 57, yes. I'm 57 years old. I have a daughter called Victoria. I have a husband, Steven, I have two sons, one's Anthony, and the other one is, oh my goodness, is Anthony and Jono. Jonathan, yeah.
Hamish: Anthony's the younger one?
Catherine: Yes, I forget their names.
Hamish: That's all right. That's fine.
Catherine: Oh my god.
Hamish: You got it.
Catherine: I have been diagnosed with Alzheimer's.
Hamish: And I know you loved your work, tell me about what you did for your career.
Catherine: I have been working with kindergarten kids for many years, and overseas in Singapore, and it was just the love of my life. Yeah.
Hamish: What is it about teaching that you love so much?
Catherine: I just love, you know, like, I love the kids. I love getting them to a point where they're independent, and it's just beautiful. Yeah. Yeah. And a lot of people say that to me. It's like, how do you do it? You've got to, yeah. You can either be a kindergarten teacher or you can't. Yeah.
Jim: When did you first start noticing the symptoms in yourself?
Catherine: I've been driving my whole life, and all of a sudden, I wasn't driving properly. Oh, that's okay, and the next, I'll be fine. Had an accident, two accidents, and then I realised this is not right.
Hamish: Tell me about the first car accident that you had.
Catherine: Okay, so it was on my way home, and I was driving, and then suddenly, I heard this, (skid sound) I didn't even know what happened. I don't even remember now. I was like in shock, like all these people came, and they were asking me, are you okay? And then, Victoria actually came and she said, "Are you okay, mum?" She was coming home from work, and I said, "No." I said, "I don't know what's happened." I did not know what happened. So I think I just didn't see the car, I just smashed into a car in front of me, but thank God it was a car that wasn't driving. It was a parked car.
Hamish: And the second time?
Catherine: The second time, oh gosh, I've got lost. I used to work at an independent school in, not too far from here, and I was coming home, and then all of a sudden, "Oh my God!" I said, "I'm on the Anzac Bridge!" And I was calling Victoria, I was calling Steven, I was going, "What do I do? Where do I go?" I ended up at Vaucluse. I don't know how, I don't even know how that happened.
Hamish: Right, you were a very long way from home.
Catherine: Yes, very long way from home. And that's when I realised something is not right.
Hamish: Was it your peripheral vision?
Catherine: Peripheral, yes. I always get stuck on that. Yeah, I had no idea, I just thought, you know, maybe it's just my eyesight's getting a little bit old, I'm getting old, but that sort of started to, you know, that's what it was.
Hamish: So, it took a while for you to reach a diagnosis of dementia. In fact, you thought your symptoms were something else entirely.
Catherine: I just thought it was menopause right from the beginning. It was like, yeah, that's what happens. This, you know, this is the time of my life that this is what happens. Not in my wildest dreams did I think that it was Alzheimer's. I still don't, I'm still like...
Jim: What would you, I fully understand that because there's a denial in the whole thing. You sort of feel like, is this really happening? You keep sort of questioning it. But what would you say were a few of the key things that you noticed that were signs that you put down to the menopause? That you sort of thought this is odd, but then, when you keep bluffing it off and thinking, it's okay, but what would you say some of those were?
Catherine: Oh, Forgetfulness. A lot of forgetfulness. I would rely on my family to give me the words. "What was that again?" I'd say to my husband, "Come on, tell me what is it again?" I just really, yeah, it just drops. That was probably the main thing, like the forgetfulness and anxiety. I've never ever had anxiety all my life till now. Yeah, till now. Even, it's getting better now, but when I got the diagnosis, that was like, yeah, horrible.
Hamish: What shape was this taking, the anxiety? What circumstances were you finding yourself feeling anxious?
Catherine: Any, everything. Like going to the shops, obviously driving, like even writing things down, like using my iPad or whatever, I was nervous about doing that as well. Things like that that I've been doing for years.
Hamish: You were seeing a psychologist around this time. What was he noticing that you maybe hadn't yet?
Catherine: I wasn't sure exactly what was going on. I couldn't work properly. I couldn't rely, you know, I was relying on everybody as well. So yeah, it was that time that he said that he thought it was a, the, you know, the one that...
Hamish: I think it's called frontotemporal dementia, which is what Bruce Willis is living with.
Catherine: That's how I remember it, and that's what he'd thought. And I just sort of like, "Hmm, no, that doesn't happen to me," you know, "I'll be fine." And then, we went to do the PET scans.
Hamish: Do you remember Catherine getting the diagnosis? Like, what did the doctor say? How did it register with you?
Catherine: It wasn't very nice when, she's a lovely, lovely lady, but when we got there and she said, "it's Alzheimer's." And when you don't even know exactly what Alzheimer's is, or you know, you didn't even think that that could even be, you know, something, a possibility. She just said, "Yeah, it's Alzheimer's" and that was it. That was it.
Jim: And that is such a devastating blow, and to be put across so easily and quickly. It is just, but life changing for you.
Catherine: Yeah. Yes.
Jim: And who was with you at the time?
Catherine: My husband. Yeah. And I just cried and cried, went downstairs to the, we stood in the hospital, but I was just cried, and cried, and cried, and cried, and cried, and I still just didn't believe.
Jim: Devastated.
Catherine: I was, yeah, devastated. It was like the worst thing that could have ever have happened to me.
Hamish: In your mind, is there a good way to deliver this kind of news?
Catherine: Because I was talking, we were talking about it last night, you know, because she's such a lovely, lovely neurologist, but I wouldn't know how she would do it any other way, but it was very much like, this is what you've got, see you later. But, you know, what is she supposed to say?
Jim: What is she supposed to say?
Catherine: Yeah, exactly. Like, imagine how hard it is for her that I'm like crying, like non-stop. My husband's crying, we're all crying. You know? It was just, I think it was just hard to, I just needed something more, I don't know what it is, and it's not her fault. I just, yeah. I felt that was the end of my life, I felt like that's it, because I didn't really know much about Alzheimer's.
Hamish: Is there a way that might have made that more digestible for you? Are there other services or other supports that could have been included in that? Or even, you know, you being pointed in a direction for more help or someone else there to be part of a consultation like that.
Catherine: Yeah, maybe something like that.
Jim: I think it'd be nice if the diagnosis came with somebody to assist you after the diagnosis.
Catherine: Yeah. Yeah.
Jim: So, if you could be, perhaps, somebody explain it to you, and they say, "Okay, before you leave, we'd like you to sit and talk to," whoever. And they sit you down and say, "Listen, this is going to feel like it's the end of the world, but this is what can happen, and we can lead you to this support group, or whatever, and you will overcome it, but you're going to feel a feeling of sadness and grief."
Catherine: Yeah, that would've made a world of difference.
Jim: And, I think if they had somebody who had been diagnosed previously,
Catherine: Yes. Yes.
Jim: Who was maybe, not a counsellor, but somebody who could go, "It's okay." Like, "You will be okay," and that would've been huge.
Catherine: That would've made a big... yeah, definitely. So yeah, it was just hard to believe that I, that I have Alzheimer's. I'm always like, you know, I was on top of everything. My kids so independent. That's changed a lot.
Hamish: How did you move beyond that thought?
Catherine: Slowly. Slowly. You know, I think with the love of my family and the support that I have, you know, slowly, slowly.
Hamish: I can see though, even today, talking about it, you're getting a bit teary.
Catherine: Yeah. Yeah.
Hamish: Can you describe what it is that is scary for you?
Catherine: I don't think about what's going to happen to me. I don't think about that. But what I do think about is my independence. That's the number one thing.
Hamish: What do you think about your independence?
Catherine: I just, I don't want it to go.
Jim: Don't want to lose it.
Catherine: I don't want to lose it, yeah. And I do get, that's what makes me teary, out of everything.
Jim: It's the anticipation of what's coming down that road. That's how I felt when I was diagnosed. It was as though, when you look down the road at what's coming, we all know what's coming. And so, you have to pull yourself back, to keep away from what's ahead.
Catherine: That's right.
Jim: Can I just ask you, if you take us back a little bit to when you were diagnosed to the few days, sort of after the event, how did you feel in yourself? Like how did you change from the day you walked into that hospital, and the day after? Because I know, for me, it was devastating. How did you react?
Catherine: It was like everything was taken away from me. Every little bit. And it's like, how am I going to get back? I didn't want to talk to anyone, even my sister, my sister-in-law. I didn't want to talk to anyone, and they're like, "But we are there for her, we want to see her." And I said to my husband, "I don't want to talk to anyone for a long, long time." Which is weird, because I'm not that kind of person, but I became that person.
Jim: I think you shut down so much. Like, you internalise the feelings, like you've just got to process it on your own first before you can sort of figure it out, how to deal with what you're going through, but nobody can really help you.
Catherine: Nobody.
Jim: It's very singular. Yeah.
Hamish: Catherine, who was the most difficult conversation to have this with?
Catherine: Probably my younger son. He is like, "There's nothing wrong with mum, there's nothing wrong, she's fine, look at her, she's fine." He was in denial, and I still think he is. because he's like, you know, I'm super mum to him. So, and I am, I am.
Jim: And you were his world, you know? So it must be terribly hard for him.
Hamish: And what's it like, I know you're saying that your independence is really important to you, what's it like needing to turn to your kids for that sort of support?
Catherine: It's so hard.
Hamish: Because you're the parent, right?
Catherine: Yeah, it's so hard. It's like we've gone back
Jim: Yeah. You're almost role swapping, and you don't want that, you know, because you want to be the parent.
Catherine: Yeah.
Jim: And you're used to, I do that now with my, mine all grown up, they're 30, 31, 32, and you don't want children to worry about you. You want to be the one that's their carer or the supporter of them, you know? Because they're the young, so, you know, it's very hard if you feel as though, not a burden, but you feel as though you don't want to do that, you just want to be you, and just carry on.
Catherine: And your kids, you just want them to be the kids. Even with Victoria, like she loves cooking, I love cooking, and that's something that, I don't know. I can do it, but I just don't want to do it at the moment.
Hamish: Really?
Catherine: Yeah.
Hamish: So that's been a big change for you?
Catherine: Big change. I love cooking, and that's where she's, you know, she's got that from me, but she's, yeah, I said to my husband, "There is no way that I want any of my kids to be support workers, or anything like that. They're my kids," there is no way that I would want to do that to them, so that's, yeah, something that we said to the kids and to my husband.
Hamish: When you were first diagnosed, I know you spent a bit of time talking to your own brain, is that right?
Catherine: Yep.
Hamish: What conversations did you have?
Catherine: I just wanted to know why? I've never even noticed about anything about my brain, and then all of a sudden, this happened, and it's like, why did you do this? Why? What have I done? What has made you do this to me? You should have given me like a bit of a warning, yeah, because I never ever thought anything about my brain.
Hamish: And were you angry with your brain?
Catherine: Probably. Yeah. Yeah.
Hamish: Did the brain talk back?
Catherine: Yeah.
Hamish: What was the...
Catherine: No, it doesn't. (Laughs)
Hamish: It doesn't really?
Catherine: It doesn't.
Hamish: And do you still do that at all or?
Catherine: No. Yeah. I don't do that anymore. I trust my brain now. Yeah, I know it's a bit silly, but that's something that I, one of the things that I felt,
Hamish: The way you talk about it, it sounds like you're more comfortable with your diagnosis now.
Catherine: Yeah.
Hamish: Can you describe how you feel about it today that's different?
Catherine: I've sort of learnt how to use my independence now, apart from support worker, sometimes, I feel that I don't have a diagnosis. That's how, I feel there's nothing wrong with me. Do you ever feel like that sometimes?
Jim: Yes. I absolutely do. And I actually convinced myself sometimes, then you feel like a fraud, almost, do you think? It's like there's a fine line, and then, sometimes, things happen and you think, "Hmm, yeah, this is odd." And then other times you think, "No, I'm absolutely fine." But I think there's just a lot to take in, and a lot to absorb after your diagnosis, to sort of get your head around everything.
Catherine: It takes a long time, doesn't it, to actually deal with it, to understand, okay, this is what I have, and this is what I have to, I see it as a, what's that word? like, you know when it's a good thing,
Jim: Yes. You've turned it.
Hamish: One of the things that you are doing is you've started an Instagram account to document your experiences. Why have you done that?
Catherine: That was just really important because, to me, because I felt that I wanted to share my story, I was ready to share it because there's so many good things about what we are going through as well. And if I could just give that one person a bit of hope, I've done my job.
Jim: So, you or someone you love has been diagnosed with dementia. If you are not sure where to turn next, you can call the National Dementia Helpline. They're here to help.
Kristin: Hi, I'm Kristin. I work on the National Dementia Helpline as an advisor. On the helpline, you can give us a call with anything that you're thinking about, and we'll have a chat with you about whatever's on your mind.
If you've just received a diagnosis of dementia, you can feel really alone and isolated. You don't have to tell anyone that you have dementia if you don't want to. You might also find, as you go, that it's helpful to let the people that you love know. Often, the people that we love want to help us. And if we're able to be clear about what's going on for us, and honest about what's going on for us, it makes it easier for our loved ones to be able to help.
If you're not sure how to start the conversation with your family and friends about your diagnosis of dementia, there are services and supports that can help you get started with that. Sometimes, the hardest part is saying, "I have dementia." If you want to talk about anything you've heard in this episode, like what to do once you've been diagnosed with dementia, you can contact the National Dementia Helpline on 1800 100 500. We're on the other end of the line. 24-hours a day, every day of the year.
Jim: Hold the Moment is a podcast from Dementia Australia. It's produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website, www.dementia.org au. And don't forget to follow Hold the Moment in your podcast app so you don't miss an episode.
The show is hosted by me, Jim Rogers, and my good friend Hamish MacDonald. Executive producers are Kelly Ridden and Grace Pashley. The producer is Liam Ridden, sound design by Sean Holden. Special thanks to the whole team at Dementia Australia, and to all the advocates who've shared their stories on this podcast.
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You, or someone you love, has just been diagnosed with dementia... what happens now? Hear how other people living with dementia handled their diagnosis experience, and how they found a positive way forward with the help of friends, family and Dementia Australia.
Bonus - Helpline: Tips on dealing with a dementia diagnosis
Helpful resources and tips on coming to terms with your diagnosis.
Transcript
[Beginning of recorded material]
Jim: Receiving a dementia diagnosis can be one of the hardest and most overwhelming conversations you'll ever have, but it's also just the first step. I'm Jim Rogers. This is Hold the Moment, a podcast from Dementia Australia. We've got a whole episode which tackles the issue. It's free to download in your podcast app right now. Just ask a friend or family member for help to access it. This bonus episode is full of specific advice on dealing with diagnosis.
If you or someone you love has dementia, and you are not sure where to turn next, you can call the National Dementia Helpline and chat to an advisor. You can get advice on questions such as what to ask your GP, or how to actually tell your loved ones, "I have dementia."
Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us, you'll speak to someone like me. We're available 24-hours a day, every day of the year. We're a free service and you can talk about anything that's on your mind. Getting a diagnosis of dementia earlier means that you've got more access to the services and supports that can help you plan and enjoy your life.
If you notice some changes with your memory, or your perception, or your mood, and you're wondering if it might be dementia, there's a checklist that Dementia Australia has that you could go through and have a look and see if the things that are listed there are things that you have also noticed changing for you. Some people find it helpful to fill out the checklist and take it with them to the GP.
If you are worried about changes to your cognition, and you're wondering if your memory's changing, there's an app that you can use called BrainTracker that lets you play a few games over time, and it will keep track of how you do on those games, and let you know if it's noticing any changes that would be worth talking to your GP about. It's free and easy to download. You can get the BrainTracker app from your app store.
You might have heard people say, "Why even bother getting a diagnosis? There's nothing you can do anyway." That can feel a little bit helpless, and it's not exactly true. There are many things that you can do to live well with dementia, to slow down the progression, feel good, and have a bit of fun along the way. Talk to your GP, give the Dementia Helpline a call. There are ways that you can live well with dementia.
After you've been given a diagnosis of dementia, you might wonder, "What does that mean? Who's going to help me with this? How do I find out more about living with dementia?" It's a great time to get in touch with Dementia Australia through the National Dementia Helpline to talk a bit about anything on your mind, questions you've got, worries you've got, and get connected to Dementia Australia's services. We have a number of different programs to match what your needs are, from living well with dementia to getting connected to another person who's living with dementia to have a chat.
If you're not sure how to start the conversation with your family and friends, there are resources and people who can help you start thinking through what you want to say to your loved ones. Dementia Australia offers a number of services and programs, including the helpline, that you could get in touch with to help you start thinking about what's most important to share with your loved ones and how you want to say it. Sometimes, the hardest part is saying, "I have dementia."
If you've got any questions about anything you've heard on this episode, just contact the National Dementia Helpline on 1800 100 500. Their trained advisors are available 24-hours a day, every day of the year.
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Episode 2 - Future planning – Where to start with wills, guardianship, power of attorney with dementia
Transcript
[Beginning of recorded material]
Kevin: 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.
Hamish: Good day guys. Good morning. How are you?
Tyler: Yeah, well, thank you.
Jim: Yeah. Morning.
Hamish: How do you feel being back in Sydney?
Jim: It raises quite a lot of emotion, I suppose, because you contemplate on the decisions you made to make a move. But yeah, we love Sydney, made a lot of good friends in Sydney as well.
Tyler: Yeah, it takes a few years to get established in a place, and so, we're in Brisbane now, and we've been there just under two years now.
Hamish: So just explain to me, who the hell are you?
Tyler: I'm Tyler, so I'm Jim's husband. We've been married for 11 years.
Jim: When I was diagnosed with younger-onset Alzheimer's in 2021, I was living in Sydney with my husband Tyler. We knew straight away we had some big decisions to make, like whether to stay in Sydney or move to Brisbane, so our kids and grandkids could be closer.
There's so many life changing things you have to think through when you get a dementia diagnosis. You have to totally rearrange your life to new circumstances, which can feel pretty overwhelming. That's why Ty and I would usually head to our favourite park, just to pause and take stock.
Hamish: You got your coffees. How was the walk?
Tyler: It was good.
Jim: Yeah, yeah. Bit over cars, but still a beautiful walk.
Hamish: Glebe foreshore is a beautiful spot, obviously, and this must bring back a lot of memories for you. I know when my dad was diagnosed, that was, you know, a prompt for us to move him up to Sydney, and to be closer to the care that he needed. For you guys, are you sort of reflecting on that moment in time now that you're back here?
Tyler: Yeah, I think, certainly, when we lived in Sydney, we used to do this walk every single day. So it was really, certainly key and pivotal for us prior to Jim's diagnosis, but also, more so post the diagnosis.
Hamish: Can you describe what it's like when you are confronted with some really big and difficult news like this to then have to make a whole bunch of really consequential life decisions that might shape the rest of your existence?
Jim: I think we were lucky in the fact that we had done major moves prior, so we'd done international moves and interstate, so we'd had a bit of apprenticeship for it.
Hamish: What about the wills, and the power of attorney, and power of guardianship, all that stuff?
Jim: That's just horrific, when you are young, as I feel, when you are young, to be sat down and told, "You need to get your affairs in order, and do it sooner rather than later, because there's no predictability about the amount of time you have that you could lose that ability." It's just really confronting. It's just something you don't think you're going to have to do, and it was really hard, wasn't it, to actually think how to do it, who to involve in it.
One of the big things you're told after your diagnosis is to go and get your affairs in order, but what does that even mean? And how'd you go about it? I'm Jim Rogers.
Hamish: And I'm Hamish MacDonald. This is Hold the Moment, a podcast from Dementia Australia. It's full of real stories about life after diagnosis. We are looking at how to make planning your future with dementia, things like your will, power of attorney or advanced care a bit more empowering.
You're going to meet a woman named Pam, who's designed her very own bright blue custom coffin as part of her "active dying plan", as she calls it. You'll also hear from a legal expert who's going to break down the paperwork process for you and make that a bit simpler, including what your options are if you don't have close family around to help navigate your affairs.
I know that's something we've had to do with my dad following his diagnosis with Lewy body dementia, but I often wonder what happens if he didn't have close family or friends around to help him with that stuff?
Jim: And I'll tell you what this has looked like for me so far. Let's go back to the part where my husband, Tyler and I, had a lot of these big conversations.
Tyler: When we had the diagnosis from the doctor, and then we were given health specialists to help us navigate through the next steps, and I think I remember getting a checklist which had the steps and things that you need to do. It seemed very straightforward, we'd already done our wills to a degree, but we sort of finalised those with...
Jim: I think it was just very emotional because it just felt very real.
Hamish: Are there particular questions or particular things you had to think about that really stood out for you?
Jim: I think the worst thing for me was at what stage would you go into care, or what stage would, when you feel as though it would be appropriate for them to say, "We are not coping anymore, he needs to go into a home." And also, who would sign off on that? Those confronting discussions were it just felt a bit out of body experience, as though it wasn't real, and I think you're in denial for a long time. Truly.
Hamish: How did you have that conversation?
Tyler: I think we had it with Daisy, didn't we?
Hamish: Daisy's your daughter?
Tyler: Yeah. And so, she's listed as well, so I think it was very challenging to talk about somebody that's was clearly, at the time, in good health in the respect of when you look at that person, there's nothing wrong with them. It's not like when somebody has cancer or something like that where they've gone through chemo, and you can visually see the impacts.
I think we had to kind of take a stock check, I think, almost, for want of a better word, around talking about something that we didn't even want to contemplate, so that was the challenging part, because you are talking about, "Okay, well, you know, if James gets to the point where you can't swallow anymore, do you have the DNR in place? The do not resuscitate at that point? When does it kick in?" So, there's all these different elements when it comes to the impacts that Alzheimer's disease has on somebody, and what that will look like in the future.
Jim: And it's very hard to convey it to anybody unless you really go through it. So for me, anybody who gets this diagnosis, or somebody who cares for somebody who's going through this diagnosis, it's just horrific. That's the only word I can really use, and that emotional rollercoaster it sends you on is devastating.
Hamish: How do you navigate, Ty, the emotional, and the, the obvious feelings that you would have associated with decisions like that, and the practical, the pragmatic?
Tyler: I think I'm quite an emotional person, so anytime we sort of spoke about it, you know, it's upsetting. And so, with that emotion comes the tears and what have you, so I think with the pragmatic side, when we looked at doing the wills and the power of attorney, and the enduring guardianship, we decided to do an injuring power of attorney so that James can carry on as normal for as long as he can, and then when he can't, I can just step in.
Hamish: Now that you have had some years to think about it and settle with these ideas, how do you think today about the possibility that at some point, Jim might actually need to be in residential care?
Tyler: Again, we’ll cross that bridge when we come to it, I kind of, I don't think about things like that too much. I don't dwell on things. I think we enjoy what time that we've got, and it's important about today, like we're here in Sydney today.
Jim: You would never have thought in a million years we would be sat here talking to Hamish about this, and a diagnosis, like it's so far-fetched, it's just too ridiculous. And I think also a lot of these things we don't really explore too much now, because we are so focused on trying to enjoy the now, and I think we're over the moon, because I'm doing so well at the moment.
So I think we thought, shit, this is going to really happen you don't know the speed of it. So I feel really good, and I'm doing everything I possibly can, vitamins, and sleep, and meditation, and everything you can do to try and stay good, so I think we're just trying to enjoy the now, aren't we?
Pam: My name is Pam Eid. I live in a small country town called Granya, in rural Victoria with my husband Brian, who is my carer, and absolutely wonderful, and I'm so very lucky to have him. Next month, we've been married 43 years.
Hamish: Pam was diagnosed with a form of younger-onset dementia after a friend noticed her word recall wasn't what it used to be.
Pam: Every day, he would comment on my speech, and my husband finishing my sentences for me. And I said, "You be together 40 odd years, you too can talk like this." And then after he left, we had friends travelling through, and on the second day, she said, "Can I ask you a question?" And I went, "Yes." She said, "Would you like me to finish your sentences for you, or wait until you can find the words?"
It was very confronting. And then, I immediately, that day, rang and made an appointment with my GP who understood after I'd also had a period of apathy earlier in the year, where nothing gave me any pleasure, I had no sense of joy, whether it be food, or surroundings, or, anyway, we put two and two together, and he got me a referral to the cognitive memory and dementia area in Albury, and a speech pathologist came out, and she was heavily pregnant, and she said to me when she left that, "When I get back from maternity leave, I will see you." I thought, "Oh, she's picked up on something." I'm 60 now.
Hamish: Yeah. So, how old were you when...?
Pam: 58. So, and to be honest, I'd never heard of younger-onset dementia. I'd never heard of primary progressive aphasia, so it was all new territory to me. So yeah, so I got the diagnosis and that was it, but I'm very lucky because I was diagnosed early, I find that as an advantage because that allowed me to do what I did to get my, I call "my active dying plan" out of the way, and now, I'm on my active living plan, and my adventure with dementia.
Jim: Which is a great slogan.
Pam: I like it. I think well, I'm going through territory that I've never been through before, so why not have an adventure with it?
The progression of primary progressive aphasia, for me, means that my language skills will deteriorate, my comprehension will go, my ability to read, to actually comprehend what I'm reading, to form the memories of what I'm reading, and looking at, and experiencing will go. And then, it will progress to a stage where I honestly don't want to be at.
I was given the wrong information, not by Dementia Australia, but by my GP at the start, and by other people who said three to five years, you won't be able to talk, you won't be able to communicate, and all these things that go along with my line of dementia.
So, I had a penultimate 60th birthday party, which was huge, and I was surprised how many of my friends didn't know what penultimate meant. I got all these 60th birthday cards and it's like, "I'm only 59 this year." But it did, it allowed me to explore all the options, and that's what I said, getting my active dying plan together, and I don't have to worry because that, to me, is the only thing I can give my loved ones, my carers at the end because I won't be able to do anything to help them, so I can help them by not having to worry about any of those things that need to be done.
Hamish: You mentioned what you call the active dying plan. What do you mean?
Pam: Getting all my affairs in order, I had my advanced care plan done, my best friend is a nurse and teaches nursing, and she and I sat down, and we spent quite a few hours doing the advanced care plan, which I recommend everybody getting done, no matter what age or whether a dementia diagnosis or not.
Hamish: What's involved in that?
Pam: Is looking at everything that you want done, and also, if you're hospitalised, whether you want to be kept on life support, if it is a matter of when you come out of, say, having a stroke, if you're going to retain what you had prior to having a stroke, or if you are really impacted, and will have no quality of life after. So all those things that actually, whether you want music in your room, whether you want to a priest, minister come in and administer to you, to give you last rights, everything is covered in the advanced care plan, and lodged that with my doctor, it goes on to the record, and therefore, anywhere, if I have a car accident and something comes up, then they know exactly what I want done. So I got my will, my enduring power of attorney done.
Jim: What prompted you to actually go ahead and organise this advanced care plan? Was it something your neurologist said to you, or was it something that you were advised to do? Or did you get that diagnosis and just go, "Right, what am I going to do?" How did you come to that decision?
Pam: Because my best friend with her nursing background, she knew exactly what people go through at the end, you know, in really severe cases of, not just dementia, so as I said, whether it be a car accident, or any way, and it was like, really, it would be best that you do this now while you are still capable of doing that, because as we know, with VAD in Victoria, once you are diagnosed with a neurological degenerative disease, you can no longer make those decisions.
Jim: And also, there's a time scale where you don't know how long you've got to make that decision.
Pam: You don't know, I was told three to five years I wouldn't be able to verbalise, I wouldn't be able to comprehend things. So. that was quite a quick decline that I was expecting, and I'm declining very slowly, which I'm very grateful.
Jim: And there's a lot of anxiety that comes with that initial, you know, concept of thinking, "Christ!"
Pam: Very quickly, I'm not going to get to my 70th birthday, I'm not going get to my 50th wedding anniversary, which was really important to me. I want to get to my 50th wedding anniversary, and I want to be able to remember it and to celebrate, but knowing that I won't is hard.
And my husband doesn't deserve to go through what he's goes through. And in my opinion, people, the carers, the loved ones of those with dementia go through so much, and they need so much support that isn't given, or they can't reach out to or it's difficult, the government
Jim: Or don't know where to reach
Pam: Or don't know where to. That's where, once again, I found Dementia Australia great because they can put you in touch with the places that are necessary. So yeah, so getting that all together, and also, having a solicitor that knows this is what you'll need to do so that we can get financial power of attorney, or whatever it's called, and all that organised because now, I can sit back and say, "I've got everything done. You don't have to do anything when the time comes."
Hamish: So one of the things you've organised ahead of time is your coffin. Tell us about that.
Pam: My niece's now fiancé is a scrap metal merchant, and goes to Melbourne, and he pulled up at a place, and there was this huge $8,000 coffin with a dented lid, and sent a picture and said, "Would Auntie Pam like this?" And Auntie Pam's gone, "Yes, yes, yes please,"
Hamish: But decoration wise, you were showing us photos before, can you describe it?
Pam: So he took all the lining out and all the rubber sort of ceiling sections, and everything out, and we took it into him as a bare bones, if you'll excuse the pun. And he painted it for me, and that was his gift to me.
And anyway, we got a beautiful, my husband found, at Spotlight, this blue velure, Royal blue velure. But one day, we were in Kmart, and we saw this cushion that says "reserved", so I had to get that, so that's in my casket, and what I did for the handles, I left the handles the gold, because this is a metal casket, and this casket weighs, I think 110 kilos, and I know when I get in it, I won't be weighing that much, and I don't now, by the way, but he's been a Melbourne football club supporter longer than I've been alive, so I've got the end handles painted red for him, and he didn't know that, so when we went to pick it up, he was really very chuffed, but that was my homage to him. So we took it home and re-lined it, and set it all up, and yeah.
Jim: Do you feel as though, because you've done a bit of that process, your housekeeping's in order and you feel a bit in control and on top of things?
Pam: Yes, yes, definitely. And when I look at it, it's covered by a royal red blanket, and when I lift the blanket up to look at it and open the door and just see the beauty of the colour, it makes me smile. I know it might sound silly, but knowing that's there, and knowing that that is what I will be in, I'm happy.
Hamish: Why are you unafraid to look at the very end of this? Because for many people, I imagine that's something that they might prefer to look away from.
Pam: My mother had an incident once where she had a near death experience, and she said that she saw all her loved ones on the other side of a river, picnicking and being together, and they said, "It's not your time", so she came back, and she relayed that to me.
And I like to think that when I die, I'll be reunited with all the loved ones that I've lost. And I think the only way to look at it is, hopefully, if nothing else, I'll be somewhere where I won't be suffering, where there will be no suffering, and I'm a heathen atheist, I'm not a religious person at all, but I just like the thought that I'll get to see those I love again, and I will be able to talk, I will be able to verbalise what I want to say, so yeah.
Jim: A lot of that as well comes from the positivity you exude really, that you've turned this into, instead of dwelling too heavily on all the bad side of it, you found a way to focus on, again, taking a bit of control really, and being in charge of the process.
Pam: I think if you let the process take control of you, you are going to get terribly, terribly bogged down.
Hamish: You spiral.
Pam: Yeah, you'll spiral. And it's easy enough to do. And yes, every day isn't a brilliant day, but if you can focus on one thing, and as I said, if you know that whatever makes you happy, if you look at that and just allow yourself, even if it's a minute to be happy, because we all deserve to be happy. Just because we get dementia doesn't mean that we should be locked away and, you know, forgotten. And that we should live amongst and let people know because, really, I see it's such a taboo subject.
You see so much on breast cancer and cancers, and everything else, because there's a cure. Dementia, there's no cure. So why should we talk about it? Why should we not lock people away so we can't see them? So we don't know that they're struggling, we don't know that they need help. We don't know that they live amongst us, which we do.
Nola: I am Nola Ries, and I'm a professor in the faculty of law at University of Technology, Sydney. I'm also a co-founder of the Dementia Law Network, and I also lead research with an ageing research collaborative at UTS.
Hamish: Throughout this episode, we've heard lots of legalistic terms. So Nola, let's start with some explainers. I guess we all know what a will is, but what does it actually do?
Nola: The will is the document after a person has died, indicates how their assets and properties should be distributed to beneficiaries.
Hamish: And so, why exactly is that important?
Nola: The importance of doing it early is to avoid problems after a person has died, so if a person dies without a will, then legislation steps in, basically, and says, "According to the law, this is how your assets will be distributed to people." So it might be that the person would really like to make different arrangements. There are particular charities they might like to make sure that they make donations to them. They want to make sure particular people within their family or friend network are beneficiaries. So it just makes sure the person gets their own choice about how their assets are distributed after their death, and means that government bodies don't need to come in and deal with that.
Hamish: And what is an enduring power of attorney?
Nola: An enduring power of attorney typically refers to financial power of attorney. So that, an enduring means that the person appointed into that role acts even after the person has lost the capacity to make particular financial decisions. So it's an enduring financial power of attorney is someone you would trust to manage your money and assets for you in the future, in the event that you are not able to do that.
Hamish: And what might that mean in the case of someone living with dementia?
Nola: It might mean that the enduring financial power of attorney helps to manage money, if the person with dementia needs home care services, for example, the financial power of attorney would make arrangements to make sure those services, the fees are paid. It might mean managing bills for other kinds of things, insurances, if a person perhaps would want a home sold, insurances, if a person perhaps would want a home sold, if they might need to think about moving into a residential accommodation, then a financial power of attorney would deal with all of those kinds of matters.
Hamish: And what about an enduring guardian?
Nola: The term for this role will vary across the states and territories, but the enduring guardian is somebody who would make healthcare-related decisions for an individual who's not able to make those decisions.
Hamish: What do we mean when we talk about advanced planning?
Nola: Advanced planning refers to a broader range of decisions a person might make, thinking ahead to their future. So, coming from a legal background, I'm interested in legal planning. So legal planning can include things like naming people you trust to be your decision maker, should you lack capacity in the future to make particular decisions, so that can be an enduring financial power of attorney, an enduring guardian who would make healthcare decisions.
It can also mean making advanced directives, which often are more about care, so that fits into care planning. It can also mean looking ahead and making a will, thinking ahead to what one might want in terms of funeral arrangements and so on. So there's a broad range of future decisions a person can think about, and then make legal documents that express what their wishes and preferences are.
Hamish: So I imagine if you are receiving a diagnosis, that you're living with some form of dementia, that there's a lot to think about all at once. Do you need to make all of these decisions immediately, because, I guess, one of the things you might be considering is how long have I got to think this all through in a way that is, I guess, smart and going to be right, and in my own best interest?
Nola: Getting that timely recommendation to do planning is really important. People who do the planning sooner rather than later often find it an easier process, and they've got more time to do it. At the same time, it can be daunting to think about all of these decisions, so any task that's overwhelming, it's good just to think about breaking it down into smaller components, but then also think about what's the point of doing all of this legal planning, going off and seeing a solicitor? And it is really about supporting the person's own choice, their control over the future.
So there's, we know that when legal planning is done well, it has so many benefits. People feel relieved that they've done it, that the person living with dementia as well as those around them, and it does avoid problems in the future. So it does avoid unwanted medical care. It does reduce the risk of the person being financially exploited by an enduring power of attorney who should never have been appointed into that role, or who doesn't understand their role.
It can also avoid disputes over a will. So, after a person has passed away, there can be quite difficult legal problems within families. So the more the legal planning is done well at the time, the more it avoids all of these future problems.
Hamish: A question I've often asked myself, you know, as we've gone through things with my dad, is what happens if you don't have four kids that can play these roles? Like what do people do when they don't necessarily have a close circle, they can rely on to play these functions?
Nola: I hear time and again how people in those circumstances, they're not able to take up their legal rights because they don't have someone they trust. So, in that instance, it is helpful to think of broader networks that people have, to think about friendships that, there may be somebody who would be a suitable person to take on some of those roles in terms of the financial decision making and management, that is something that professionals, a legal or accounting professional may act in those kinds of roles. So it is really important for people to think more broadly about options
Hamish: And what about communication of your wishes, or whatever it is that you've put down on paper, because people might on some level think, yeah, I'm happy to do that, but not necessarily understand what's going to be involved. Whose responsibility is that?
Nola: That is certainly something that the legal professional should be encouraging their client to do, to go away and have those conversations with those key people, especially the people appointed into those legal roles. And within interactions with healthcare professionals, there are opportunities to do that. There are systems like my health record, and a person can, if they have made an advanced care directive, for example, upload their care directive to that online resource, so that a care directive is available to health professionals who may need access to it in the future. Particularly down the track, if the person is admitted to hospital in more of an urgent situation, then healthcare providers know they can look at the health record, they can find the person's care directive if they have made one.
Jim: That was really helpful to hear that information from Nola. It can be really overwhelming to think about all the different paperwork at once, but it's good to know there's people like her out there making it accessible.
Hamish: Yeah, and Dementia Australia actually has some great resources on the website around this, including a webinar on future planning that you can sign up for, we'll link to that in the show notes.
Jim: And if you feel like you just need to talk to someone about it all, you can call the National Dementia Helpline on 1800 100 500, and speak with a trained advisor about your situation. They're available 24-hours a day, every day of the year.
Hamish: Or you can just call Jim, Jim will take your call.
Jim: Hold the Moment is a podcast from Dementia Australia. It's produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website, dementia.org au. And don't forget to follow Hold the Moment in your podcast app, so you don't miss an episode. The show is hosted by me, Jim Rogers.
Hamish: And by me, Hamish MacDonald. The executive producers are Kelly Ridden and Grace Pashley. The producer is Liam Ridden, sound design by Sean Holden. A special thanks to the whole team at Dementia Australia, and to all the advocates who shared their stories on this podcast.
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How to tackle paperwork like wills, guardianship, power of attorney and be clear about the legal processes you might need to undertake with a dementia diagnosis.
For support, you can contact the National Dementia Helpline on 1800 100 500 (24 hours a day, seven days a week). An interpreter service is available. The National Dementia Helpline is funded by the Australian Government.
Hold the Moment is produced by Deadset Studios.
Dementia Australia acknowledges the support of the Australian Government for this initiative.
Resources for you
The National Dementia HelplineFree and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year.
Planning aheadAs your dementia progresses, you may no longer be able to make decisions on your own. These are some key considerations and documents to help you plan for the future.