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
[BEGINNING OF RECORDED MATERIAL]
[TITLE CARD: HOLD THE MOMENT]
[TITLE CARD: DEMENTIA AUSTRALIA]
Jim: 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 making were pretty big decisions, so you get them wrong and it makes life difficult. And it wasn't till much later, at some point, went for a cardiologist appointment.
Receptionist: "Mr. Rogers, the doctor will see you now."
Jim: And the cardiologist sat me down in the room. And my phone was ringing.
[Sound of phone 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, "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.
Jim: And she said: "You know, are you 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 younger 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.
[Sound effect representing a shift in time.]
Jim: 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: G'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: It is. It's huge. To be honest, Hamish, 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: In many ways that's exactly why we're doing this podcast together, for Dementia Australia.
Jim: And you'll meet lots of people who are living with dementia. And we're going to explore some of the common issues that all of us are facing.
Hamish: So dad's living in residential aged care now, close to my siblings and I. We are all in Sydney. I go 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 outdoors man. 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: This is something that so many people I talked 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: So, in this series, we're going to meet Heather who's staying active and learning new skills along the way.
Heather: Oooh 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!" [Laughter.]
Jim: And Anthony, who isn't shying away from dating with dementia.
Hamish: Ooh la la.
Anthony: I clicked straight away. And then we started texting, and then talking on the phone. And then I told her my diagnosis.
Hamish: And then there's Pat, facing the scariest part of it all with a smile.
Pam: 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.
[Music plays.]
Jim: Hold the Moment is full of helpful tips
Hamish: and stories that we hope you might take some comfort from. Alright, Jim, you ready to do this?
Jim: Let's do it. Let's find out how to live your best life with dementia.
Hamish: Search 'Hold the Moment' wherever you listen to podcasts.
[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]
Kevyn: Hello, my name is Kevyn. 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 join 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.
[Background noise of an office environment with phones ringing, muffled sounds of people talking.]
Jim: I think generally, I have 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 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 2000s.
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.
Jim: 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 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, what's happening. I was starting to think is the, you know, 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.
Receptionist: Ah, 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. [Sounds of test equipment being used.] And my phone was ringing. [Sound of phone ringing.] And it was annoying, because it was ringing and 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 [sound of phone ringing] it rang again. And she said, you know: “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, can you, tell… how do you…?” And she, she wouldn't. And she said: “It's fine. Take your time. And just see if you can work it out.” [Sound of phone ringing.]
Hamish: The cardiologist said to Jim…
Jim: “Are you experiencing this sort of thing now and again?” 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, 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, you know, sometimes when they say “can that person be there with you?” maybe it's not good, you know, 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 damn-well sorted.”
Hamish: But instead, the neurologist said:
Jim: “We've reviewed your PET scans etc. Unfortunately, we can see that you have younger onset Alzheimer's.” [Music plays.] It was almost an out-of-body experience. I just - it's as though time stood still.
[Sound effect of something whizzing past.]
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.
[Music plays.]
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're 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: Yes, 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 very much are used to having Ty in the family. And, so yeah, he's ‘Poppy’ to the four grandchildren. And very lucky.
Hamish: You're obviously someone that throughout your life had exercised a lot of control over your own destiny: you'd moved countries, you'd build families and businesses and buildings and homes. Confronting a situation where you kind of couldn't really seize control in that way, how did you handle that?
Jim: I remember - even with my wife at the time, when, when she was diagnosed with her cancer - and they sort of said: “Go away and try and, you know, we think we think you'll be okay, but move along and try and enjoy life.” And I remember her desperation at 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 that there was no rulebook.
Hamish: And could they give you those timelines?
Jim: Not really, because the one thing they really emphasise 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 know. I 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 in your life and the life of your family.
Jim: [Laughs.] 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, you know, 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, then 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 an 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 gone from being perfectly fine, to unable to, you know, look after themself, care for themself, make decisions, those sorts 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 gonna kill you.” Which we were both really gobsmacked at the time, we jaw-dropped and, 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 felt a little trivialised by the GP. So you, 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, 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're 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 half-time, I seriously just wanted to go home and go to sleep. I feel as though I'm at the 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 is Catherine Daskalakis. 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, is Anthony and John, Johnno, Jonathan. Yeah.
Hamish: Anthony is the younger one?
Catherine: Yes! I forget their names!
Hamish: That's alright. 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 loved so much?
Catherine: I just love, you know, like, I love the kids. I love getting them to a point where they're, like, independent and just, you know, it's just, it's just beautiful. Yeah.
[Sound of someone calling out in the background.]
Yeah.
[Catherine laughs.]
I know a lot of people say that to me. It's like: “How do you do it?” You've got to…
Hamish: You’ve got a big heart.
Catherine: Yeah, you can either be a kindergarten teacher or you can't.
Hamish: 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. I'll, you know, the next day I'll be fine. Had an accident, two accidents. And then I realise: “This is, 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 [makes a short hissing sound]. I didn't even know what happened. I don't even remember now. [Music and the sound of footsteps.] I was like, in shock. 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.
Catherine: 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 – not driving. It was a parked car.
Hamish: And the second time?
Catherine: The second time, oh, gosh: I've… I got lost. I used to work at an independent school in - not too far from here. And I was going, 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, a very long way from home. And that's when I realised, something is not right.
Hamish: Was it your peripheral vision that was not there?
Catherine: Peripheral, yes. I always get stuck on that. Yeah. Is… I had no idea. I just thought, you know, maybe it's just that my eyesight is getting a little bit you know, old. I'm getting old. And, but that sort of started to, you know, that's what, 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 I have, I was, 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 you know, when you keep bluffing it off and thinking “yes, okay”, but what would you say some of those were?
Catherine: Forgetfulness: a lot of forgetfulness. I would rely on my family to, you know, give me the words. “What was that again?” I'd say to my husband: “Come on, tell me what is it again?”
Jim: It just drops.
Catherine: I just really, yeah, 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 till, 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, or 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'd 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, you know, I couldn't work properly. I couldn't rely, you know, I was relying on everybody as well. So, yeah, it was that time when that he said that he thought it was the, you know, the one that…um.
Hamish: I think it's called frr…
Catherine: Frontal. That’s it.
Hamish: Frontotemporal dementia.
Catherine: Yes, yeah, yeah.
Hamish: Which is what Bruce Willis…
Catherine: Yes.
Hamish: …is living with.
Catherine: Yes. That's how I remember it. And that's what he thought and I, and I just sort of like: “Hmmm, 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, when… she's a lovely, lovely lady. But when we got there, and he's, 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 possible, possibility. She just said: “You've got... yeah, it's Alzheimer's”. That was it. That was it.
Jim: That is such a devastating blow and to be put across so easily and quickly, 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 um… we all stood in the hospital. But I 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 I, she's such a, she's 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? This is the trouble.
Catherine: Yeah, exactly. Like, imagine how hard it is for her that I'm like, crying, like nonstop. 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?
Catherine: Yes.
Hamish: Or even, you know, you being pointed in a direction for more help, or…
Catherine: Yeah.
Hamish: 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 down and say: “Listen, this is going to feel like it’s the end of the world, but, this, this is what can happen. And we can lead you to this support group or whatever, and you will overcome it, but you're gonna feel a feeling of sadness and grief.
Catherine: Yeah, I think that would have made a world of difference.
Jim: And I think if they had somebody who had been diagnosed previously…
Catherine: Yes.
Jim: Who was maybe not a counsellor, but somebody who could go: “It's okay, like, you will be okay.” And that would be huge.
Catherine: That would have made a big…
Catherine: 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: Um: slowly, slowly. You know, I think with the love of my family and the support that I have, um, 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. Yeah and I do get - that's what makes me teary, out of everything.
Jim: It's the anticipation.
Catherine: Yeah.
Jim: 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 it's, you have to pull yourself back.
Catherine: Yeah.
Jim: 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.
Jim: Yeah.
Catherine: Every little bit. And it's like, how am I gonna 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're, you know, we're there for her, you know, 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.
Catherine: Yeah.
Jim: First.
Catherine: Yes.
Jim: 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.
Catherine: Yeah.
Hamish: Catherine, who was the most difficult conversation to have this with?
Catherine: Probably my younger son. He's like: “There's nothing wrong with mum. There's nothing wrong. She's fine. Look at her. She's fine.” He was – yeah – in denial. And I still think he is, because he's like, my… you know, I'm ‘super mum’ to him. So, and I am. I am.
Jim: And you’re his world, you know.
Catherine: Yeah.
Jim: So it must be terribly hard.
Catherine: Yeah.
Jim: For him.
Catherine: Yeah.
Hamish: 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: So hard.
Hamish: Because you're the parent.
Catherine: Yeah. So hard.
Jim: The thing is, we...
Catherine: It’s like we’ve gone back.
Jim: Yeah. You’re almost role-swapping.
Catherine: Yeah.
Jim: You don't want that.
Catherine: No.
Jim: You know, because you want to be the parent.
Catherine: Yeah.
Jim: And you’re used to… I do that now with mine; mine are all grown up. They’re 30, 31, 32. And you don't want children to worry about you.
Catherine: Yes.
Jim: You want to be the one that's the carer, or the supporter of them, you know. Because they're the young.
Catherine: Exactly, yeah.
Jim: So you know, it's very hard if you feel as though – not a burden, but you feel that they don't want to do that. You just want to be you.
Catherine: Yeah, yes.
Jim: And just carry on.
Catherine: And your kids, you just want to be there. Your kids. Even with Victoria. Like she's, she loves cooking. So she's, I love cooking. And that's something that I've, 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, um 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.
Jim: No.
Catherine: There is no way that I would want to do that to them. So that's 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: [Chuckles.] Yep.
Hamish: What did you, what conversation did you have with your brain?
Catherine: I just wanted to know why? Why? I've never even noticed about anything about my brain and then all of a sudden, this happened. And it's like: “Why, why did, why did you do this? Why? What have I done? What has made you, you know, do this to me? You should have given me like a bit of a like a…”
Jim: Warning.
Catherine: “Like a warning, yeah.” Because I never, ever, thought anything about my brain.
Hamish: Were you angry with your brain?
Catherine: Probably. Yeah, yeah.
Hamish: Did the brain talk back?
Catherine: [Chuckles.] Yeah. No, it doesn’t!
Hamish: It doesn’t really?
Catherine: It doesn’t.
Hamish: And you still do that at all? Or…?
Catherine: No, I don't do that anymore. I trust my brain now.
Hamish: Yeah.
Catherine: Yeah, I know. It's a bit silly, but that's something that I, yeah. 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 learned how to use my independence now. Apart from my support worker. Sometimes I feel that I don't have a diagnosis. That's how – I feel there's nothing wrong with me.
Jim: Yes.
Catherine: Do you ever feel like that sometimes?
Jim: Yes, I absolutely do. And I actually convince myself sometimes. Then you feel like a fraud – almost. Do you think?
Catherine: Yeah, yes. Yes.
Jim: It's like, there’s fine line.
Catherine: Yeah.
Jim: And then sometimes things happen. And you think: “hmmm, yeah, this is odd”.
Catherine: Yeah.
Jim: And then other times you think: “no, I'm absolutely fine”.
Catherine: Yeah.
Jim: I think there's just a lot to take in and a lot to absorb.
Catherine: Yeah.
Jim: 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?
Jim: Yeah.
Catherine: To understand, okay, this is what, this is what I have, and this is what I have to, you know, 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…
Catherine: Yep, yep.
Hamish: …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're going through as well. And if I could just give that one person a bit of hope, I've done my job.
[Music plays.]
Jim: So you, or someone you love, has been diagnosed with dementia. If you're 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 Kellie Reardon and Grace Pashley. The producer is Liam Reardon; sound designed by Sean Holden. Special thanks to the whole team at Dementia Australia and to all the advocates who have shared their stories on this podcast.
[END OF RECORDED MATERIAL]
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're 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're worried about changes to your cognition, and you're wondering if your memory is changing, there's an app that you can use called BrainTrack 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 BrainTrack 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”.
Jim: 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.
[END OF RECORDED MATERIAL]
Episode 2 - Future planning – Where to start with wills, guardianship, power of attorney with dementia
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. 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 join 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: G'day guys, good morning. How are you?
Tyler: Yeah, well.
Jim: Yeah. Morning.
Hamish: How do you feel being back in Sydney?
Jim: 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 straightaway 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, a bit overcast, 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 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, you know, certainly when we lived in Sydney, we used to do this walk every single day. So it was really, you know, 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're young, as I feel. When you're 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 do 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're 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, you know, navigate, help us navigate through the next steps. You know, and I think I remember getting these sort of checklists, which sort of had, you know, the steps and things that you need to do. It seemed very straightforward, didn't it? We'd already done our wills, to a degree, but we sort of finalised those with.
Jim: I think it just 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 kind of 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're 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, um, with Daisy didn't we?
Jim: Yeah.
Tyler: After after.
Hamish: Daisy is your daughter?
Jim: Yeah.
Tyler: And so she's on, she's listed as well. So I think it was very, it was very challenging to talk about somebody that was clearly at the time in good health, and that respect of you know, from a, when you look at that person, there's, you know, there's nothing wrong with them. It's not like when somebody, you know, has cancer, or something like that, where they've gone through chemo, and you can visually see the impacts. I think, where we, where we had to kind of take a 'stockcheck', I think almost for want of a better word around talking about something that we didn't even want to contemplate.
Jim: Yeah
Tyler: So that was, that was the challenging part. Because you're, you're talking about, okay, well, you know, if James gets to the point where he can't swallow anymore. Do you have the DNR in place with 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 the 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 - an emotional roller coaster it sends you on - it's devastating.
Hamish: How do you navigate Ty the, the emotional, and, you know, 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, you know, 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, you know, to do an enduring power of attorney so that, you know, 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, you know, 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 need, might actually need to be in care, residential care?
Tyler: Again, I'll cross that bridge, when we come to it, I kind of 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 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're so focused on trying to enjoy 'the now'. I think we're over the moon, because I'm doing so well at the moment. So I think we thought: "Shit, this is gonna really..." you know, 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 Eade. 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 the 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." And I thought: "oooh, she has picked up on something". I'm 60, yes 60 now.
Hamish: So how old were you when?
Pam: Fifty-eight. 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', so, which was huge, and I was surprised how many of my friends didn't know what 'penultimate' meant. So I got all those 60th birthday cards, and it's like: "I'm only 59 this year!". But it did, it allowed me to, 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'.
Pam: Yeah!
Hamish: What do you mean?
Pam: Getting all my affairs in order, getting, 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: It’s looking at everything that you want done. And also, if you're hospitalised, whether you want to be kept on life support, whether you - 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're 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 a priest, minister come in and administer to you, to give you last rites, everything - sort of as covered in the advanced care plan. And launched that with my doctor, who then goes, 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've got my will, my Enduring Power of Attorney done, um.
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 in, in you know, in really severe cases of not just dementia, 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, like with VAD in Victoria, once you're diagnosed with a neurological degenerative disease, you can no longer make those decisions.
Jim: Yeah
Pam: So yeah.
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 sort of decline that I was expecting. And I'm declining very slowly. So, for which I'm very grateful.
Jim: And there's a lot of anxiety that comes with that initial, you know, concept of thinking: "Christ am I going to have do this?"
Pam: Very quickly. I'm not going to get to my 70th birthday. I'm not going to get to my 50th wedding anniversary, which was really important to me, I wanted to get my 50th wedding anniversary, and I wanted to be able to remember it and to celebrate. But knowing that I won't, is hard.
Jim: Very.
You know, and my husband doesn't deserve to go through what he 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.
Jim: Can guide you.
Pam: 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) fiance 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 dinted lid. And said, 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 we took all the lining out and all the rubber sort of sealing 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 velour, royal blue velour. 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 supporter, 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. That was my homage to him. So we took it home and relined 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.
Pam: Yes
Jim: And on top of things?
Pam: 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 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 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. 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 not be, 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're going to get terribly, terribly bogged down.
Jim: You spiral.
Pam: 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'm 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 property 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're 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 if they might need to think about moving into 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 health care-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 health care decisions. It can also mean making advance 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, the person living with dementia, as well as those around them that, 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, 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 health care 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. [Laughter.]
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 Kellie Riordan and Grace Pashley. The producer is Liam Riordan sound designed 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.
[END OF RECORDED MATERIAL]
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.
Bonus - Helpline: Tips on “getting your affairs in order” when living with dementia
How you can organise and plan for your future with dementia.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: Planning for your future with dementia can be daunting. But after my diagnosis of younger onset Alzheimer's, I wanted to make sure I have things in place and my loved ones are looked after and my affairs are in order. I'm Jim Rogers. This is Hold the Moment, a podcast from Dementia Australia, full of stories about life after diagnosis. Dementia Australia have some really great resources on their website around this. There's a webinar on future planning that you can sign up for. We also have a whole podcast episode on this topic, you can download right now. If you're in need of someone to talk to about it all, you can call the National Dementia Helpline. They're available 24 hours a day, every day of the year. You could speak to an advisor, like Kristin.
Kristin: It can feel really overwhelming when someone tells you to 'get your affairs in order'. Like what does that even include? And how am I supposed to have that all done right away? The most important thing to know about getting your affairs in order is: it's important for you to get across what you want, and who you want to be the one to help you with that. And it doesn't all have to be done today. You can break it down into pieces and talk to people that you trust, to help you do each of these steps along the way. It's always okay to bring a support person with you, to any appointment or any questions that you've got. There might be a point in the appointment where the person that you're talking to, such as a solicitor, wants to speak just to you, to make sure that you are getting what you need from the appointment and you are getting what you want. But that doesn't mean that you can't bring a loved one along with you to help make sure that your questions are answered. And to help prompt anything that you might want to ask, but haven't remembered in the moment. When you're preparing to go and meet with your solicitor, it can be helpful to think ahead of time the kinds of questions you might want to ask. And especially when you're starting to think about the future and the medical decisions, it could be helpful to talk to your GP, to see what kinds of questions could be helpful to ask your solicitor and you could write those down and bring a list with you when you go. It's really up to you who you want to tell about these things. There might be some really important people in your life that you feel it's important to involve in knowing about what's going to happen. And it might be tricky to start that conversation.
You could call the helpline to have a chat about getting started in that conversation. Other times, you might feel like you don't want to let other people know about what your plans are. And that's why it's important to reach out to a solicitor and to get the legal piece of things completed. It can be really tricky to start the conversation about how you want things to go for the end of your life. There's always a piece of grief involved in that. And it can feel like you're worried about making other people sad, maybe be a little sad yourself. And that might happen in the conversation and that's okay. But it's also important that things go the way that you want them to. And the way that that's best done is by being really clear about what you want. And the people who love you will appreciate how clear you've been because then they're going to be able to do what you want. If you're interested in learning more about the topic of future planning, getting your arrangements in order, Dementia Australia has a webinar about that called Future Planning. You can find the webinar on Dementia Australia's website: dementia.org.au.
Jim: And 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.
[END OF RECORDED MATERIAL]
Episode 3 - Hold on to exercise – Staying physically fit while living with dementia
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations Advocate with Dementia Australia. These lands on which we are meeting are many countries filled with languages: similar and different. For more than 50,000 years, we have come together to trade knowledge: to learn and to teach. Today, we join 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. Welcome and thank you.
Hamish: We are about to pull up at your trainer's house: his name's Nick. Tell me about what you're going to be doing this afternoon.
Jim: I lift weights, I do some cardiovascular work. And he also builds into what I do some balance work and memory. So look, those things, do they help, do they not help? But you know, he's doing everything he can to try and build the program to benefit me. It's just he's just very conscientious and very interested in trying to help. So you know, that's supportive.
Hamish: What's the hardest bit of the training regime?
Jim: I hate the bike.
Hamish: You dread the bike?
Jim: Yes. I hate the bike. Because... and he knows it. Sometimes I try to talk, because that's my thing.
Hamish: You talk your way out of the training.
Jim: Yes. So I try to get him talking. And at the end of the program, if it's too late, because he's got another client, you know, I could miss the bike. And he'll say: "oh I think you're you've missed the bike Jim; we've been talking" and I'll go "oooh, really?", and he'll go "only joking: get on that bike", you know. I'm Jim . And this is Hold the Moment, a podcast from Dementia Australia, full of real stories about life after diagnosis. It's hosted by me and my friend Hamish . Hi, Hamish, how are you?
Hamish: G'day Jim. So we're covering all the ups and downs of life with dementia across this series. And I know that staying fit and healthy is a really big part of living a good life with dementia. And I know, Jim, that you are active now, because you won't stop talking about it. But you weren't always a gym junkie, were you?
Jim: I'm definitely not a gym junkie. But no, absolutely not. I was active. We'd go on a lot of walks and things like that. But before my diagnosis of younger onset Alzheimer's, you'd never really catch me in a gym. But now I'm trying to stay more on top of it. You know, you got to do the best you can. How about your dad? Is he managing to stay on top of his exercise?
Hamish: So, Dad is living with Lewy body dementia and he does exercise a bit. We go swimming. He's always been an incredibly active man: was a rower in his early days, cross-country skiing, bushwalking, marathons, that kind of thing. So these days, we go to Bronte beach in Sydney and there's an ocean pool there. And it's quite accessible. So that's really important for us. But I think the best thing about it from my point of view, is that it's a really joyful thing that we can do together.
Jim: It's something you can share; something you can enjoy and remember that you did that with...
Hamish: Totally, it just means that the relationship is not consumed by all the other health stuff that's going on in his life. So, if you weren't a gym junkie before, tell me about this guy, Nick, that's kind of turned around your fitness journey.
Jim: He's absolutely great. He just won't let me quit. And you know, without him I really don't think I'd be able to discipline myself into doing, you know, what he's prepared for me, but his process is great because he's very understanding. Sometimes I can feel quite lethargic and don't have the energy, so he'll tailor it to suit me.
Hamish: All right then, let's go and meet the incredible 'super-Nick'.
Jim: Let's go.
[Music plays.]
Jim: Hey, Nick, my friend. How are you?
Nick: Good, good: yourself?
Jim: Yeah. All good. Ready for a workout. I always hate meeting with you, because I know what's coming. So this is Hamish.
Hamish: Hey Nick, nice to meet you.
Nick: Hey mate. How are ya?
[Noises of exercise equipment.]
Nick: All right. About there. Three, two, one: bar comes up. Good, middle of your chest for me. Yep, we're gonna go eight reps for you: find the middle. Good man. Nice and controlled. My name's Nick , I'm an exercise physiologist. So, background-wise, I've just come out of two years of private practice work.
Hamish: Okay, so what sort of people do you sort of deal with?
Nick: I get a really wide variety of clients that I look after. So I do a lot of rehab work. I do a lot of, I guess insurance WorkCover stuff, NDIS work, conditions through NDIS that I've covered before. So obviously, dementia, cerebral palsy, multiple sclerosis, ASD. So yeah, I've got to cover a wide variety of clients and that's, I guess, a big part of the joy in it, that it's not sort of seeing the same person every day, you get to experience a lot of different people and conditions too.
Hamish: Probably sounds like a dumb question. But we think of dementia as a disease of the mind. Why does the body and physical exercise matter? Does it actually help the brain?
Nick: Yeah, absolutely. So cardio, respiratory fitness, and yes, getting your heart rate up is going to be one of the biggest positives for something like dementia and really any condition that has a neuro element to it. So getting oxygen to the brain is going to be huge in that regard. And that's a lot of evidence in regards to that, of how helpful cardio exercises for neuro conditions.
Hamish: Jim is obviously a really fit, healthy guy. Does he need much help? Does he need specific tailored exercise?
Nick: Yeah, absolutely. So I know, Jim looks, looks a million bucks.
Hamish: That's what he says, anyway.
Jim: I'll give you that tenner later.
[sound of cash register]
Nick: So typically, a lot of people sort of focus on purely the cardio or strength side of it. But I guess, as you've seen before, through our session, it's really important to also integrate things in, like balance, planning, memory, all those sorts of aspects of cognitive function.
Hamish: What stands out to you, you know, in that sort of list of stuff that you wouldn't have thought of doing on your own?
Jim: Oh look, you know, I've never been a gym junkie, or interested in doing the things I don't like, like lifting weights, or, you know, as we've mentioned, the bike and things like that, where he gets me to get my heart rate up and stuff. So, I wouldn't really have the discipline now to do those things. If it wasn't for the fact that I know, when we meet, he's going to make me do it. And he's also set up a hydro program, where I have to get my heart rate up through swimming, etcetera. But these things, I would definitely, I wouldn't discipline myself to do it. So it's only because I show up and see him: I know he's invested in me wanting to do it. I feel as though I should do it, for him more than me now, you know? So it's worked, really.
Nick: All right, do you want to start? Jim, I want you to try to stay on this line the whole time. So if you, you can start where you are, you're going to go tandem walk. So, you're going to go heel-toe, heel-toe - all the way down. As you're walking towards me, I'm going to be passing a footy to ya, all right?
Hamish: Can you explain for me what you're doing specifically, just then? So at the end, there was an exercise where you're getting Jim to step one foot in front of the other, and you're passing him a footy while he was doing that. What's the purpose of that? Why does that work? Or why is that valuable for someone living with dementia?
Nick: Balance is one of the common things that will decline after being diagnosed with dementia and the condition. So that exercise in particular was focusing on Jim's dynamic balance. All right, you go, take a couple steps, get your balance, little pass going in. Back to me. Good man. A couple more steps, smack it all the way down to the bench. Good. I'll get you to turn around there, face the other way. I'll switch. And that's we'll just do a tandem walk. So walking heel to toe along a straight line. And then again, Jim's balance and function is quite good. So I was just progressing that challenge and adding in a footy, and adding a new element to make a little bit more difficult, and test that.
Hamish: Good. Watching it, I'm thinking there's probably quite a lot of people that would really struggle to do that.
Nick: Oh, it's certainly not easy. But yeah, Jim's doing well. And I guess that sort of touches on what I sort of mentioned before, what we can currently do, you just want to be able to do that for as long as you can. And the only way to do that is challenge yourself. That's the only way you can sort of get better and hold on to what you got. And last couple of steps, finish off well. Beautiful: good, good. We'll take that.
Jim: Yes, thanks Nick. A very interesting thing, when I first met Nick as well, he said, he we sat down and he shaped up all this stuff and did a whole analysis on me first, you know, sort of got to know my background, blah, blah, blah, what, what the condition was, and he'd also got notes. But what he said to me, which really resonated with me - and I've often thought about this: "You need to treat this session as medicine. Don't think this is for fun, this is something to do. This is: think of it when you take your medication, this is part of your medication - you need to do it." So that's stuck, really stuck with me, even though I don't want to do certain aspects, I'll do it, because I think of it as taking another pill, you know.
[Music plays.]
So even if I don't exactly love doing it, I'll keep exercising for my body and my brain. Not everyone has to be convinced to exercise though.
Heather: We came from a very sporting family. We all enjoyed our sport very much.
Jim: This is Heather.
Heather: We loved to feel well; our mother was very encouraging for us to eat well and sleep well, and exercise well.
Jim: She's always been very active, ever since she was a young girl.
Heather: So we value our bodies tremendously as a family. And all my grandchildren are very enthusiastic in their various sports and other activities like that.
Jim: Getting diagnosed with Alzheimer's in her mid 70s only strengthened Heather's resolve to stay fit.
Heather: Well, the diagnosis was very much part of how I felt about my body and it not working for me as it should. For example, I'd ridden my bike to school as a child. I'd ridden my bike to university. I'd ridden my bike mostly to work, even though that was a lot of distance. And then I couldn't ride my bike. I couldn't balance on my bike. And I had to put my bike in the shed and wonder why.
Jim: Was that what led to you investigating something's wrong?
Heather: It's an accumulation Jim. I think we all know a little bit to ourselves and not quite going well. And I also noticed as I was doing my little jogging, sort of a disbalance coming up, so that was balance. And vision was a bit of a problem as well. And so I just felt my always-excellent body that it always responded very well to me. Things were not going well.
Jim: So did that lead you to explore a little bit more with medical, the medical field to find out you know, what is happening?
Heather: I think I pretended that nothing was happening. "Oh, I can't balance anymore. Maybe I've got an ear infection. Oh, no, I'll be fine. I'll, I'll manage." And then I had quite an incident. I had to go to the doctor, I think for an injection, or some minor happening. I went into the doctor's surgery and I said to him: "I think I've just driven through a red light." And he said "ohh" and sent me for a scan almost straightaway to a local hospital. That scan sent me for a couple of MRIs. And within 10 days, I had a phone call from the psychiatrist at the main hospital to say that they'd like to see me. And then I got my verdict. I think I spent 12 months in the doldrums. I think I came to grief. The psychiatrist pronounced her verdict. I can still remember that blue file that she was holding and reading from. Physically, I felt as if somebody, a gang had attacked me and bashed me all over the place. And I was just quite ruined. I recovered because my family loved me and gave me lots of sympathy, but immediately reminded me that I had a duty to them, not to burden them and leave them in sorrow with their mother having Alzheimer's. I always, I have a great sense of humour. I was always, you know, laughed and joked through the dramas – that we have, little dramas that we have in our life; cheered the kids on with their cut knees and all that sort of thing. So I couldn't have my family grieving for their mother with Alzheimer's. And that's why I sort of picked up my crumpled little body and held it up and said: "Come on. There must be something you can do."
Jim: What does your day-to-day exercise routine look like now?
Heather: Oh, it's very, very structured. I aim quite high, at something like a half marathon or something like that, so I really structure my exercise around keeping my body really limber. And you're just looking after it in every way. So, not too much running, right, because you know, you can't keep pushing those bits too hard too long. So I do that four times a week. And then the other two days, I do cross-training. And then I have a rest on Monday, yeah. I swim with our community bus only takes us once a week to where there's a pool. So I do I swim a kilometre there. But my swimming - my swimming is not I'm not the best swimmer in the world. And of course, I walk every day. And we've always had lots of dogs. Some have been working dogs, kelpie dogs, and they like about 10k under their belt and the new little pup, she has about three and a half k in the morning and about five in the afternoon.
Jim: Fantastic. They're lucky dogs to have such a good owner that's taking them out. Do you do anything else sort of from a social aspect with your exercise?
Heather: Ooh, certainly. I have line dancing, which is now up to three hours a week.
Jim: Wow.
Heather: I know. It's marvellous.
Jim: That must be fun.
Heather: Well, my teacher only the other day, she said: "You're all facing the wrong way." And she was pointing at them. And they said: "Oh, and Heather is too." And she said to them: "And Heather's got an excuse."
[Line dancing music plays.]
Jim: How do you find with learning the routine and memorising the routine?
Heather: I couldn't memorise the routine. So, she talks it through, the whole dance through. There might be, say 22 repeats of eight moves, eight different moves, and she will talk, for all of us, she will talk those moves through. She will abbreviate them, because all I need is a hint that it's going to be the left foot (or not the right foot).
Jim: Yeah.
Heather: And she would just gently talk that through.
Jim: Repetition, repetition, repetition helps, because the more you repeat it, the more you repeat it, I know with myself, if you if you do it over and over and over, it seems to be a lot easier than something that's new, or you've just learned. Do you find that with your line dancing?
Heather: The repetition, Jim is, you're so correct. And I said to her, I said: "Chris, I love it when I've done 23 of the things. And the 24th one, I get it: all eight steps right and in the right order."
[Applause.]
Jim: Yeah, so you can sort of relax and really throw yourself into it, because you feel so confident then that you know those steps.
Heather: And the confidence, the confidence in the fact that you've got so much brain, that you can use other bits to store this dancing that once you would have, as you said, memorised, but you're not doing it that way anymore. I think you're doing it by a repetition and somehow ingraining yourself in that work. Now, that is why running is so good. And you're feeding your brain with oxygen on this boring, repetitive over and over again. And it's the same with the swimming. I mean, you've got four bits going, and then you've got a breeze as well. Work that out!
Jim: And do you find as well with your running, that doing repetitive routes in a way that, you know, off the back of your hand, inside out, back to front. That makes the running a little bit more relaxing. So you don't have that feeling of perhaps getting a little lost, or feel a bit confused, you know that route so well, that it's sort of ingrained in your memory. Do you feel that way?
Heather: Yes. Very good question, Jim. When I was talking about wondering about my situation with my possible Alzheimer's, we have a very large garden. And even out in that very large garden, if I was bending down doing something, I'd stand up, and I didn't quite know where I was in my own garden. And then, if I was running out in the forest, I would have to be thinking about where I was. If I'm thinking about where I am, then my running, I may trip and fall or some other thing. So you're so right. I have this very regular route. And everybody in our village knows that that's that mad woman.
Jim: That's Heather.
Heather: Who lives there. She's running again. And that's where she runs and I have a bottle of water placed under a gum tree at every four kilometres distance, so I stop and have a drink there. And then I run to the next bottle of water.
Jim: That's so smart to do it that way. So as you have some sort of focus, how far you're getting around the route, and you've also got a little bit of refreshment there to keep you going. Have you got a little bit of an addiction now to marathons, because I believe you've signed up for a marathon this year. Is that right?
Heather: Yes, I think unless you have a goal, you can cheat.
[Music plays.]
Jim: Heather's right. Unless someone else is holding you accountable it's easy to let yourself off the hook and just stop exercising. That's why I personally see my trainer, Nick. So let's go back to the gym with Nick and Hamish.
Nick: All right. Start off, we'll go, keep it nice and simple to start with, we won't have any things to pick up. But I want you to start on this end. Now as you go through, I only want you to step on green and red.
Hamish: So, there's an exercise that you do with Jim, where you lay out plates on the ground with different marks on them that are different colours. And then you give him basically a code to walk through the little field of mats.
Nick: I only want you to step on green, and let's go blue. Green and blue.
Hamish: What's that about?
Nick: Yeah, that's, that's, again, another fun one that I like to use with Jim. So the idea behind it is it's a motor planning challenge for Jim. And to a certain extent, there's also a bit of memory and recall involved in it as well. So what that sort of entails is we'll set up, with sort of, I guess, as you mentioned, different coloured plates moving along the floor for about five metres. And before Jim takes off, I'll give him instructions on what colours he's allowed to stand on. And then again, if you want to sort of make that a little bit trickier and progress things, I'll usually chuck things out on the floor where I'll instruct Jim before he takes off: when you get to the other side, you've got to pick up this, this and this - ignore this one. So yeah, Jim's got to essentially pick a direction where he can go. So he's got to plan it in that sense. And then he's got to execute it. And remember the instructions at the same time. So there's a bit going on for, in that exercise. But again, it's a really good one where you can regress and progress to the individual and how they're going.
Hamish: I suppose this is another way of looking at all of this Nick, which is this is a guy that's been been dealt a tough card, you should have sympathy, he should be wrapped up in cotton wool and should be looked after, doted upon, and he you are flogging him on a bike.
Nick: It's just tough love: it's tough love, it's the best way to go about it. So I think it's, I know, he doesn't like it at the time. But I know it's all out of love. And it's good for him. So I make him do it.
Hamish: And on a more, I suppose, serious kind of personal note, chatting to Jim on the way here, he was talking about, you know, an idea he has in his mind, of his life and his trajectory in life. And, you know, really wanting to see his grandkids grow up and convincing himself actually he can in some way beat this. Are you kind of on board with that project of like giving hope, I suppose?
Nick: I think right from that sort of first initial session I had with Jim, there's - and he was quite aware of that - there's no way you can undo or reverse the condition. But it's all about ensuring that I guess Jim can live the best quality of life and do everything that he wants to do for as long as possible. And, and the way to do that is addressing those, those focus areas mentioned before, so things like balance, things like strength, things like getting your cardio activities, all your cognitive tasks. Those are those are the ways you're going to be able to address that.
[Music plays.]
Jim: Even though I dread it, I get back on that exercise bike because I know staying active will help me enjoy life for longer. Heather's found acceptance of her diagnosis through exercise and it's something she works on every day.
[Music plays.]
Heather: My husband and I went straight into Dementia Australia office when I had the diagnosis. I think it was even on the day. And we went in and we said: "Help!" And they provided us with booklets. We then did a course with them. It was a course as a couple and that was good. Then I saw Lisa every, once a month. She's a counsellor. Lisa said to me: "Heather I've worked with a lot of people." She said: I've worked with a ballet dancer who was very, very, very good in her profession and she'd have to give up. And she found it really good, she would put cards all around her and she wrote 'acceptance' on these cards. And being quite a visual person I like to, you know, I like colour and I like paintings and art and things. I thought: "Yes, right!" So I went home and got large sheets of paper, double-foolscap size. And I wrote very, very big in very thick Texta: 'Acceptance'. And I pinned it up on the kitchen pinboard. I put one in the bathroom, because you go into the bathroom, and you look in the mirror and there's your mother and you go: "What are you doing in there, Mum?" So you need acceptance of how you are, and just how you feel. Where else did I put it? I put it where I, I struggle with a computer terribly, I could no longer type. And now when I do, I type a bit like an orangutan, you know, I look at the keys and that's how I type. So I put 'acceptance' up there, just under the computer screen. So 'acceptance', 'acceptance', all over the house. And more or less hitting yourself over the head with this fact. And once I'd accepted it, I could move on.
Jim: For Heather, exercise is full of rewards, far greater than just the rush of finishing a marathon.
Heather: I went for a run this morning. And I was just trotting along. And as I went, they were beautiful frangipani flowers, scattered on the footpath. Some were white. And then I came upon another large tree and they were pink. And I just enjoyed that so much: the beauty of nature, the perfection of each one of those flowers, all with that touch of yellow in the frangipani, all beautifully-shaped every one quite perfect. All the same, millions of them. It's just a wonderful world. Please go and have a look.
[Music plays.]
Jim: Whether you've always been a long distance runner, like Heather, or you just want to keep up with a gardening routine, you can call the National Dementia Helpline for advice, tailored to your specific diagnosis.
Kristin: Hi, I'm Kristin, I work on the National Dementia Helpline as an advisor, 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. You might wonder how exercise can help with your dementia. Sure, might make you feel physically stronger, might help if you're worried about falls. But more than that, it can help build your confidence. You can start to meet new people at a shared activity that you like, if you start swimming laps at the local pool. It doesn't have to be difficult. The types of exercise that you do really comes down to you. What sorts of things do you enjoy? What do you love, what makes you smile and feel good and strong and confident? If you've run marathons before that's great, you can keep running. But if what you really love is dogs, walk yourself up to the local dog park, throw a couple of balls for the dogs there. It's really about finding what makes you feel good inside: doing a bit more of that. And if you're the adventurous type, you could try something new, something you've always been interested in. Look in your local council for something that might be going on, like Tai Chi: if you've never tried that, you could give something new a try too. What's really important is finding an exercise that you like to do something that makes you feel good that makes you feel strong and that you enjoy doing. If anything you've heard today has prompted questions or you're interested in knowing more about keeping active with dementia, you can contact the National Dementia Helpline. We're here 24 hours a day every day of the year on 1800 100 500.
Jim: Hold the Moment is a podcast from Dementia Australia is 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 on your podcast app, so you don't miss an episode. The show is hosted by me, Jim and
Hamish: By me, Hamish . The executive producers are Kellie Riordan and Grace Pashley. The producer is Liam Riordan; sound designed 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.
[END OF RECORDED MATERIAL]
You don’t need to become a gym junkie when you’re diagnosed with dementia – but a little physical activity can go a long way. Find out how you can incorporate an exercise routine that includes balance tasks, strength training and memory games.
Bonus - Helpline: Tips for staying active with dementia
How to maintain regular exercise and keep your body moving with dementia.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: Before my diagnosis of younger onset Alzheimer's, you'd never catch me in a gym. But now I look forward to each exercise session. I treat it like medicine. It's just something I have to do if I want to live well with dementia. I'm Jim Rogers. And this is Hold the Moment, a podcast from Dementia Australia. It's full of stories about life after diagnosis. We have a whole episode on exercise you can download in your podcast app right now. In it, I head to the gym with my trainer, Nick, and we meet Heather, who loves line dancing, walking her dogs, and even running marathons to stay active. This is our bonus episode on exercise with an advisor from the National Dementia Helpline. So whether you prefer to swim laps, try something new, like yoga, or you just want to keep active in your garden, here's some advice.
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. So you might be feeling a bit overwhelmed after a diagnosis of dementia with all the changes that people are suggesting. If you have an exercise routine that you like, you can keep doing that if it feels like it's safe and makes you feel good, go for it. If exercise is something new that you're looking to include in your routine, then you might have to think about how it might fit. Now that doesn't mean you have to start running marathons today. That might mean you park a little further away and walk to the shops. Or maybe you've always wanted to join the community garden so you can go meet some new people and get digging in the dirt. If you're wondering about how physical activity can help with dementia, there are some of the physical health benefits that everybody thinks about with exercise: getting stronger, building up muscles. But there's a number of other things that exercise can help with: things like improving your mood, you'll feel better if you're on the move, it can make you feel more confident in yourself that you're able to do things that maybe you couldn't do before, if you practice them enough. And there's also a social piece. If you're sharing exercise of any kind with other people, you might meet some new friends. And that's also important. It does seem like there's some research that suggests that exercise regularly can help slow the progression, especially if some of the symptoms that you're experiencing are physical, so you can build up strength that reduces the chance of falls and gives you confidence again in moving through the world. The types of exercise that you do really comes down to you. What sorts of things do you enjoy? What do you love, what makes you smile and feel good and strong and confident? If you've run marathons before that's great, you can keep running. But if what you really love is dogs, walk yourself up to the local dog park, throw a couple of balls for the dogs there. It's really about finding what makes you feel good inside; doing a bit more of that. And if you're the adventurous type, you could try something new, something you've always been interested in, look in your local council for something that might be going on, like Tai Chi. If you've never tried that, you could give something new a try too. What's really important is finding an exercise that you like to do, something that makes you feel good, that makes you feel strong and that you enjoy doing.
Jim: If you want to talk more about keeping active with dementia, you can contact the National Dementia Helpline on 1800 100 500 and speak to an advisor, just like Kristin. The helpline is available 24 hours a day, every day of the year. And there's lots more episodes of Hold the Moment in your podcast app right now. So do follow the show, or have a friend or family member help you access each episode.
[END OF RECORDED MATERIAL]
Episode 4 - Hold on to relationships – Family, friendships and dating after a dementia diagnosis
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands on which we are meeting are many countries filled with languages, similar and different. For more than 50,000 years we have come together to trade knowledge, to learn and to teach. Today we join 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.
[Music plays.]
Anthony: I met Carly in Brisbane through a ‘walking football’ tournament. Carly had flown over with a couple of her friends. And it wasn't a great venue, because the floor was very slippery. And I did my knee. But I found out since then, that Carly had seen me that day and thought: “who's this madman, throwing himself around?”
Kylie: I'd been playing and he was on the sideline. He had crutches. He had been injured the day before in the tournament. And I just went up and said “hello”.
Anthony: And I said “hello”.
Kylie: Thought: “That’s an interesting guy”. We talked a little bit.
Anthony: And I just was smitten. I just got to get to know her; didn’t even contemplate about her living in Adelaide. And actually not at that point in time. But even when I did, it just didn't occur to me how that was going to work. I just wanted to get to know her. We just clicked, bonded. And she's just a beautiful person.
Kylie: Couple of weeks later, I came up to Brisbane to watch the Women's World Cup. And we're at a park and I asked Anthony about how he got involved with Dementia Australia. And that's when he told me about his diagnosis. And I pretty much thought: “holy shit”. [Laughter.] And I did think about researching it. I went back to Adelaide and we kept talking and that's when I decided actually, I'd rather get to know Anthony than get to know his diagnosis. Just kind of figured that, you know, we really liked each other. We had this connection. And you just, no-one knows what's going to happen in life. So let's just live now.
[Music plays.]
Jim: Meeting new people is hard at the best of times, but Anthony and Kylie's story is proof that you can forge new, loving relationships with dementia. I'm Jim . And this is Hold the Moment, a podcast from Dementia Australia, about life after diagnosis.
Hamish: And I'm Hamish Macdonald. And you're not wrong, Jim, life is already full of tricky relationship dynamics, not just romantic ones, with friends and with family too. And then when you add dementia into the mix, it can be pretty hard to navigate how things change between you and someone you love. So you're about to hear more of Anthony's story, who found friends - and love - after his diagnosis, as well as Dom’s story, trying to be a great daughter to her dad, as well as his carer.
Jim: Yeah, sure is a challenge. I know you've dealt with all of this Hamish, with your friends who’ve got dementia, as well as your dad. Are you ever worried about saying the wrong thing, or know how to be there for them now?
Hamish: Naaah, not really. [Jim laughs.] So let's go meet Anthony.
Anthony: My name is Anthony. I'm 67. And I've been diagnosed with young onset dementia. And I have got Alzheimer's version of that.
JimL So tell us a little bit about who was in your life before your diagnosis.
Anthony: Before my diagnosis, the most people in my life were people I worked with. I was in a relationship, which changed after my diagnosis.
Jim: When did you first sort of start to notice your symptoms?
Anthony: Well I actually didn't start to notice them myself. The person I was in that relationship with…
Jim: Aaah.
Anthony: …was noticing symptoms. So she kept pushing me to get checked, which did lead me to go to my GP, which then led to go on to a geriatrician, which led to go on to a neuropsychologist, which led to a diagnosis. Even though I was in that relationship, I was still on my own. I lived on my own. And I couldn't go to the hospital to see the doctor because we aren't allowed. So I got a phone call while I was in my unit by myself and my first reaction was: “I just received a death sentence.” It just totally shocked me. Well, because my partner was pushing me to see a doctor...
Jim: Yep.
Anthony: …the next step was I had to tell her. And it wasn't a warm, supportive reaction.
Jim: And she wasn't with you for that diagnosis? You were alone?
Anthony: I was alone in my unit. Yeah. So I felt isolated and very lonely then, particularly when I didn't get any support.
Jim: That's sad. And I believe you've got siblings. How did they handle the news of your diagnosis?
Anthony: Very well. It’s actually caused us to come closer.
Jim: Okay.
Anthony: I've got two brothers and a sister. And my next oldest brother, we talk twice a week, every week now. And just to catch up, just to say hello. And we never used to do that. To get the lack of support from the person I was with at the time and then have a different, different reaction from my brothers and sister. It was confusing, but the time was confusing anyway, because I didn't know what was going to happen to me. And I didn't know whether in 12 months’ time, I was going to be not driving, or whatever, what my future held.
Jim: Terrifying.
Anthony: Yes. Now it's different because I know more. But it was very confronting and confusing, because I didn't have the knowledge. I didn't really have any other support in the… where I live. So my only support was my siblings in another state. And kind of, that helped me a lot, the fact that they were supportive, because, you know, I was very lonely and very scared. And, you know, at times, like I said before, you may not want to be here. But through their support and their encouragement, that changed that.
Jim: And so your relationship sort of broke down from your diagnosis.
Anthony: Yes.
Jim: How was the dating scene, or what happened?
Anthony: Well, after that, after a period of time, I was still wanting someone in my life. And I tried the dating apps, and that, and met a few people. But I always feel I should be upfront and honest. I would not like to get into a relationship, and then six months down the track, tell that person. So I was always upfront and honest. And it was pretty well, 100 per cent, every time they walked away.
Jim: So that must have been so hard for you to find the right person or even tackle that.
Anthony: It was difficult, but I still felt I needed to stick to my core values and explain that. Because it's a very important piece of information. I mean, we all know that you can get into a relationship and who knows what can happen down the track. But this was a pre-diagnosis. So, I felt I really had to be honest. And it got to the stage where I just thought: “Well, this is not going to work. I'll just have to be content that I’ll be on my own.” But I went to my GP and she said, you know, “find some social company, some sport, perhaps, you know, try and start that way, to get yourself out of it and talk to more people”, which is not normally what I’d do before diagnosis either. So I said: “Right, I'll get on the internet” and Googled ‘sport for over 60s’. And by chance I came across ‘walking football’.
Jim: Tell us a little bit about what is ‘walking football’? How does it work?
Anthony: Well in Australia, it's probably more appropriate to call it ‘walking soccer’. And it's just like a small version, safer version of the running game of soccer. Right, firstly it's five or six people a side, and usually with goalkeepers, and each side will have a different colour bib. And usually there's a referee. The whistle goes [whistle sounds], kick off – it’s walking, so they can't run. So they have to pass it. You have opposition will walk up towards you, try and stop you passing; there's no tackling, as such. So they have to rely on you making a mistake or you pressuring them to do something with the ball. So therefore the technical skill is then to know where your other players are, and to pass the ball to them. And people walk at different speeds, but it's… can be very highly competitive, and it can be very social. We have all parts of that games and the ones I played is highly competitive. We played against a young side, they'd be in their early 20s. They play the running game. We challenged them to a game, they thought “haha, smash these”. Take the running out, take the physical part out and we smashed ‘em five-nil. So it just proves what the game is like – it levels the field for all abilities.
Jim: So was it nervewracking when you very first started this walking football and you went to meet new people? Did you feel anxious because of your dementia diagnosis?
Anthony: I didn't tell them for a while, and all. I felt really good, walking football, because I felt accepted. And particularly as I became a goalkeeper, and turns out, to be a good one. The best moment I ever had on walking football field was the day that someone gave me the nickname ‘The Wall’. There was a day you played for an hour and a half. I never let a goal in, no-one got past me. And the person that does our Facebook and that, thinking, “oh well, what can I write?” He’s just like a wall.” And that's where it came from: ‘The Wall’. And I was – I've never had a nickname, not a positive one. Particularly growing up, where I do. And I just: “Wow. That's amazing. I've got a nickname. That's awesome.” Which made me feel like I was somebody.
Jim: Yeah. Which is what you want, you know, particularly when you're new to the sport.
Anthony: Yeah. Yeah, so I was like, first-picked. As against, like in school when you're last, or never picked. And that's really, really helped me a lot to feel that, that belonging.
Jim: Yeah.
Anthony: And then after a while, once I got to know more people, I went on the committee. And then I told the committee. And then it sort of went from there, as I told a few other people. And they all accept a bit. A lot of them come and ask questions about it, which I thought was great. And most people said: “Oh, we wouldn't know you've had it.”
[Music plays.]
Jim: So not only has walking football brought new friendships to your life – it's also brought love. You met Kylie through the sport. So how did she react when she found out about your diagnosis?
Anthony: Kylie is a very special person. And she came back and said: “Well, the diagnosis doesn't define you as a person.” And wanted to get me, to know me more. Which was just amazing.
Jim: Tell me, what did that mean to you for her to react in that way?
Anthony: Oh, that was so special. That just made me feel so wonderful. And I thought well, maybe there's a chance. Totally unexpected. I was expecting the same…
Jim: Rejection.
Anthony: …rejection.
Anthony: And the fact that Carly lived in another state would have made it very easy for her to do that.
Jim: So you were originally in Brisbane and Kylie was in Adelaide.
Anthony: Yes.
Jim: So in order to make this work, you have to think, okay, somehow I've got to get this, you know, easier for us to be in touch with each other.
Anthony: We’d fly to Melbourne or I’d fly to Adelaide or she’d fly to Brisbane. And that's just not sustainable long-term. So my lease was coming up. And I thought well, what do I do? “Ah, bugger it.” Sorry.
[Laughter.]
Jim: That’s OK.
Anthony: “I’ll move to Adelaide!” I can still do walking football there. I can still do work with Dementia Australia's advocacy. I can do everything in Adelaide, I can do in Brisbane.
Jim: And now you're based in Adelaide and the friends that you've got there that you're starting to get to know, the network you’re starting to get to know, how do they come across with the diagnosis that you've talked to them about? Or do they ask you questions? Are they interested? Are they curious? What sort of reaction have you had?
Anthony: A lot of them don't know.
Jim: Really?
Anthony: At this stage. There's a few that do. No one asks the question. So a lot of people don't know. And that's fine for the moment.
Jim: Yeah, I think it's a tricky one, isn't it? I mean, part of you, in my own experience, part of you doesn't really want to talk about it. Because, you know, it's a bit of a downer to talk about it. But then part of you sort of wants to acknowledge it. It's a fine line, isn't it, to sort of get it right?
Anthony: It is. And if people know, and they ask, I am more than willing to talk and educate them about what it's like and to try and help them understand because they might have other family, relatives that may get a diagnosis, or they may get one themselves. And that to me, is educational. It's to help them understand. But I only do that if they ask.
[Music plays.]
Dom: Hi, my name’s Dom. My Dad had vascular dementia. His name was Noel and he was a plumber, and a very warm, lovely personality. He had a great sense of humour. And yeah, I was his advocate, carer, entertainer, a looker-afterer and daughter.
[Laughter.]
Hamish: It sounds like you were really close to your dad.
Dom: Yeah.
Hamish: Tell me about him. What kind of guy was he?
Dom: Dad used to wear crisp cotton shirts. And they were always like colourful patterns. And he would always iron them beautifully and always be well-presented. He was warm, funny: he was pretty much everybody's friend. He - yeah, he was very social. And he loved fishing. He loved telling a joke. So we often read from ‘the dad joke book’ I brought up on visits to him. And he worked for himself his whole life. So I found him so inspiring as a kid, I ended up working for myself, just inspired by his ethics and you know, his working ethic. And yes, so he was my hero, my Dad, but he was also probably one of my most favourite people in the world.
Hamish: When you are that close to someone and you get, you see them receiving that diagnosis. What's it like for you? How did you take all of that?
Dom: Obviously, grief and shock straight up, I was already concerned that might be the case: that he may have dementia. But I had to really quickly, always be – feel like I was never looking sad in front of him, always in control and using humour throughout his illness, to make him feel confident that he was being cared for properly and to make him just not worry, and not see that we were worried about him. So it was that false bravado that we put on. I'd often, you know, put on the false face – do a lot of laughing, joking, confidence-stuff with him. And then I'd have to leave the room sometimes and have a bit of a cry. Yeah.
Jim: Because it's quite hard for children as well to cope with that, as I'm sure you would find Hamish with your dad and your siblings. It's a bit of a team effort really of what's gonna happen in the future.
Hamish: It’s scary because you feel like you're making decisions that are possibly quite consequential.
Dom: There is definitely role-reversal. And you notice that as the first thing. In the very first meeting when I took Dad to the geriatrician with Mum and we heard the diagnosis – he had a test in the meeting – and pretty much straight up the geriatrician said: “You have severe moderate vascular dementia”. And afterwards I talked with him, after the meeting and said: “How do you feel about this? Have you been worried about your cognitive thinking? Have you been concerned?” And he said: “Yes. Yes, I have.” And Mum and I told him he is not to worry any more. We are the ones that are going to take on all his responsibilities in life. He is just to enjoy himself and we’ll be his carers and make sure he lives a happy life.
Jim: It’s finding a fine line isn’t it, to really just find the right balance?
Dom: It is. Luckily he had that sense of – he loved ridiculous humour. [Laughter.] So I could hide behind that a little bit. Whether it was like, when I was helping him eat at lunchtime, so when he got quite bad, helping him eat food. I would often like just break out and play the spoons. Just do a random! [Laughter.]
Dom: And that would make him laugh and then I knew I was connecting with him. Sometimes we’d play music – his favourite music – to enliven him if he was sleeping and not eating.
Hamish: What kind of music?
Dom: He loved “Phantom of the Opera”, strangely.
Hamish: OK.
[Laughter and music.]
Dom: So we would play that. You know how it starts off ‘do-noo-noo-noo-noo-noo-nooh’? [Imitates the sound of the opening music and laughs.] Everyone else in the wing would be like: “Oh my goodness, what is this music? It sounds like a funeral!” [Laughter.]
[Music plays.]
Jim: So Dom, tell me how did your mum react to your dad's diagnosis?
Dom: Um, so Mum was devastated, of course. Mum and Dad have been together 56 years. So they're a very, very loving couple. Mum was, went into straight into grief. She was grieving the whole time Dad had dementia. But she was amazing. She managed to be brave and very loving for Dad, and she did some incredible things that I'm really proud of watching her do. She helped Dad keep his sense of self. She – when Dad had to go into aged care, because she was caring for him at home and when it became too dangerous for him to stay at home because he was having falls – she made sure that he kept his sense of self by taking all of his shirts home every afternoon and laundering and ironing them: exactly how Dad would have done, because he was a crazy ironer. And if the laundry took any of Dad’s shirts, she would make a beeline down to the laundry in the aged care home [laughter] and steal the shirts back, so they just looked perfect for Dad, and he was probably the only man in aged care that wasn't in his pyjamas, but she really helped him retain his sense of self.
Jim: That's amazing. That's so important, as you say, to help keep that person, you know, close to being who they were.
Dom: Exactly.
Jim: And how about your dad after the diagnosis? Did he do things as well that you recollect maybe protected you guys a little?
Dom: I was the one to have to tell Dad he was going into aged care. And I still have a lot of grief thinking about it. It was one of the hardest things I've ever done, but Dad made it much easier for Mum and I. We had taken him out to coffee that morning. And I had driven him to the aged care home. And I told him – in the car – that he was having to go just away for a few weeks, while mum needed a lot of rest, because she was very tired. And I said to him: “Do you understand?” And he said: “Yes. Yes, I do.” And I started getting a bit teary. And he could see that. And I said: “Thanks for understanding. You're amazing, aren't you?” And he said: “Yes. Yes, I am.” And I said: “And you're really humble too, aren’t you?” [Laughter.] And he said: “Yes. Yes, I am.”
Hamish: So everyone's turning up with this kind of fake bravado. [Laughter.]
Jim: Yeah.
Hamish: Trying to make everyone else feel better.
Dom: Yeah, yeah. And these are the moments when – I mean talking about false bravado – suddenly you don't care anymore. You're just there making people happy: and yourself. Because it is something you can hide behind: laughter and humour. And it's important as well, just to…
Jim: You’ve got to hold on to it, haven’t you?
Dom: …you do.
Hamish: So how do you feel, Jim, about your kids adapting? I mean, you've talked to me in the past about the changing dynamics with your husband, Tyler, but I'm just kind of wondering about the kids as well.
Jim: I think with my kids and my kids’ partners, I try and be jovial, chat and enjoy a beer with the boys and don't really want to go down that road too much. And I think they respect that in me as well. Because I think they avoid saying: “How are you?”
Hamish: Yeah.
Jim: You know and we talk about everything and anything but that.
Hamish: This is the false bravado that you were telling me about, right?
Dom and Jim: Yeah.
Dom: Yeah and I think it's really important. It's living a day at a time and celebrating the moment you're in now, which I think is really important with dementia, living in the moment you're in, and not. I think that's where anticipatory grief comes in when you start worrying about what's going to happen.
Hamish: So Dom, you did lots of things to try and keep your father-daughter relationship alive I guess, while he was deteriorating.
Dom: Yes.
Hamish: How did you make that distinction? And how did you help foster that?
Dom: I made tools. I knew I would have bad days, when he had a bad day. And I would be: “How am I going to keep up this happy front?” You can't do it all the time. So I thought: “I'll make a book for Dad.” So I started with a ring binder folder. I started with a few little stories about Dad when he was young, some photos of him growing up. I reached out to his siblings and said: “Do you mind like sharing some stories about funny stories – because he always had funny stories in his life – about growing up together?” And they wrote like two pages of stories. Put them in the book. I started writing stories on our travel, we had some funny things happen when we're travelling overseas together. I put pictures with every story. And each time I visited, I would bring him up a new story. And I thought: “This is a great way to give him something to look forward to.” I would say: “There's going to be another story next week! Just wait!” And it also helped me, if I was having a particularly sad day and I didn't feel it, like I could really cheer him up – or I thought: “I can go to that book and just start reading from it.” And it's got the funny stories and so it was like a good backup plan for me. And I thought it would be really helpful during COVID when nurses…
Jim: To know about him. Look into his life a little. That’s fantastic.
Dom: Yeah. And they could read to him about it. And visitors I often noticed – not just with our relatives or friends – but, well Dad had a good friend as well that would visit and he did say to us: “I'm so nervous, I don't know…” – because Dad was non-verbal, some, most of the time – “I don't know how to talk to Noel anymore.” So, I thought: “This is a great go-to for him as well. He can just either point at the pictures or read some stories. Yeah, but I did notice just in the home in general, people being scared – not knowing how to engage with people with dementia.
Hamish: Yeah.
Dom: So it was a great toolkit for, yeah.
Hamish: That can be very confusing for people, right? Because, they’re used to… like, I get calls all the time now from family or Dad's friends saying: “I can't really, like your dad's not answering the phone. He's not replying to emails, I call him and I can barely hear him.” And that's true. He's just losing all of that function.
Dom: Yeah.
Hamish: But I don't really know what the… I don't know what the solution is. So I end up going to visit him. We go through all his emails and his messages, and we reply or do stuff. And then as I'm leaving, I'll call back one of the friends, put it on the loudest speakerphone and put it on Dad’s chest and say: “Off you go!” [Laughter.]
Dom: That's great!
Hamish: I don’t know if it’s a very good solution. And Jim, have you noticed any of your friends reacting in different or interesting ways when they learn about your diagnosis?
Jim: Yeah, as you said earlier, everybody's different, the way they react. Some of my friends are super-positive. And really look for “well I do that, you know, I'm forgetful” and stuff like that. But some of my friends don't really mention it or discuss it. And I think they get the vibe from me that ‘let's just be positive and carry on’. But a couple of my close friends – really close friends – have been to awareness about dementia and really invested and read up on it, you know, and spent a lot of time finding out stuff, but some of my mates just are very jovial about and don't really want to deal with it.
Hamish: The ones that have invested in figuring things out about it and learning and taking courses or whatever. What's that meant to you?
Jim: A lot. Yes, it’s meant a lot because Caroline and Nat, who, you know, went on holiday with Ty and I recently, they both went and did a course and learnt about it, but they're very in touch with a lot of stuff, and they’re very understanding and I feel very relaxed, because I don't have to put any bravado on – which is exactly what you were chatting about earlier – with them.
Hamish: If they say or do the wrong thing, do you say: “Go back to the course!”?
[Laughter.]
Dom: “Do some homework!”
Jim: I don’t, but I should.
[More laughter.]
Dom: I think the most important thing I tell anybody that says – you know, you do hear this often, people say: “Well what's the point of visiting people in an aged care home because they're often asleep or they're not… they've got dementia, you know, they're not going to engage with us.” I think an important thing is trying to reach in to your loved ones with dementia by using tools, by reading them stories from their past, by playing games, even if it's – or colouring in. Just enjoyable things you can do together. And I think when people say there's no quality of life for someone, even with advanced dementia, I really disagree because to me, I think quality of life is reaching in and connecting with someone you love.
Jim: If you're struggling with how your friendships and family relationships have changed since your diagnosis, or if you're the friend who just isn't quite sure what to say, you can call the National Dementia Helpline and talk to an advisor like Kristin. They're here to help.
Kristin: After a diagnosis of dementia, you might feel like so many things are going to change. And one of the ones you might be really worried about is the changes in your relationship with your partner. If you're worried about how your relationship is going to change, or maybe you've already noticed that it has and you want to talk to somebody about that, Dementia Australia offers support on the helpline or with counselling, so that you and your partner can talk about how you're both feeling and talk about ways that you can make things a little better. Maybe even a little fun as you go. It can be really difficult when you find out that you've got a diagnosis of dementia. And you really want to reach out to the people that you love: your friends and family. But it feels like they're pulling away. I've spoken to a number of friends who call the helpline because they don't know what to say. And often, I'll ask them: “What do you usually talk to the person about?” And you know, maybe it's footy, or maybe it's flowers, or maybe it's a joke that you've always had. And I encourage them to just start there. One thing that might make it easier for your friends, is to let them know how they can be with you. How they can make the friendship work easier. So maybe at golf, it's hard for you to write the score. Your friend can do that for you and you can let them know that. And when you're making new friends, you don't have to tell them right away: “I have dementia”. It's okay to talk to them about anything else you'd want to talk about. Eventually, it might come up, just like anything else would in conversation. If you want to talk more about anything you've heard on this episode, like navigating new territory and your relationships, you can contact the National Dementia Helpline on 1800 100 500. We're available 24 hours a day, every day of the year. Give us a 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 …
Hamish: And by me, Hamish. The executive producers are Kellie Reardon and Grace Pashley. The producer is Liam Reardon; sound designed by Sean Holden. A special thanks to the whole team at Dementia Australia and to all the advocates who share their stories on this podcast.
Jim: If you're enjoying Hold the Moment, you can leave us a review, or rate us in whatever podcast app you're listening to right now. It really does help other people struggling with dementia find the show. We'd love to hear from you.
[END OF RECORDED MATERIAL]
Hear the stories of people who have stayed connected to their friends and family, and created new connections, after a diagnosis.
Bonus - Helpline: Tips on staying connected and managing relationships after a dementia diagnosis
Your guide to staying connected to friends and family, and creating new connections, after a diagnosis.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: After a dementia diagnosis, connecting with others can look pretty different. Your relationship with your friends or your loved ones can change, sometimes into unexplored or exciting directions. Some of my friends have done courses, they want to talk about it, while others find it really hard to talk about. I'm Jim Rogers, and this is Hold the Moment, a podcast from Dementia Australia. In our episode on relationships, you'll meet Anthony, who's been dating someone new since his diagnosis. And you'll meet Dom, who found her relationship with her dad changed quite a bit while she was caring for him. In this bonus episode, an advisor talks about navigating connections with others.
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.
After a diagnosis of dementia, you might feel like so many things are going to change. And one of the ones you might be really worried about is the changes in your relationship with your partner. If you're worried about how your relationship is going to change, or maybe you've already noticed that it has and you want to talk to somebody about that, Dementia Australia offers support on the helpline, or with counselling, so that you and your partner can talk about how you're both feeling, and talk about ways that you can make things a little better - maybe even a little fun - as you go.
Nobody wants to feel like a burden, especially to their loved ones. It could be really helpful to let your loved ones know that that's how you feel. And you might be surprised at the response they have. They might not realise that that's how you feel. And there might be some ways that they can offer to help you or support you that are a little different, that maybe make you feel a bit more empowered or a bit more in control of things. Also, your loved one might just tell you that they love you and that they don't mind. And that might be enough to remind you that you're still important to them, and that they value you just like you are.
It can be really difficult when you find out that you've got a diagnosis of dementia. And you really want to reach out to the people that you love: your friends and family. But it feels like they're pulling away. I've spoken to a number of friends who call the helpline because they don't know what to say to the person who they love who's just been diagnosed with dementia. And often, I'll ask them: “What do you usually talk to the person about?” And you know, maybe it's footy, or maybe it's flowers, or maybe it's a joke that you've always had. And I encourage them to just start there. So if you find your friends pulling back, you could invite them into one of the things you've always shared. Invite them along fishing, if that's what you've always done. And what they'll see is that you're still you and you still like fishing, and you might still make bad jokes.
One thing that might make it easier for your friends is to let them know how they can be with you, how they can make the friendship work easier. So maybe at golf, it's hard for you to write the score. Your friend can do that for you, and you can let them know that. It can be really tricky at any stage of life to meet new people, make new friends. It might feel even trickier now that you've got a diagnosis of dementia. What I'd say is: “How have you made friends in the past?” Think about that.
Were you a football player before? Maybe you could find someone to watch football with? Did you like knitting? Maybe you could join a local knitting group; meet some other people who have the same interest as you. And when you're making new friends, you don't have to tell them right away: “I have dementia.” It's okay to talk to them about anything else you'd want to talk about. Tell them your name. Tell them your favourite food. Tell them what you'd like to do on the weekend. Eventually, it might come up, just like anything else would in conversation.
Some people living with dementia feel like it's a great time to try something new. Have you always wanted to join a choir? Now's a great time to try that new activity, meet some new people while you're doing it. Have you always wanted to paint with oil and never known where to start? Your local council might have different activities that you could try and you'll meet new people at those activities, who have similar interests.
One of the aspects about your relationships that might be changing is the sexual relationship. You might be wondering about navigating consent, now that you've got a diagnosis of dementia. As your relationship with your partner evolves and changes, you might be wondering, is it still okay to have sex? Of course it is. If you're interested, and the person that you're with is interested, you can get up to anything that you both feel is safe and comfortable.
If you want to talk more about anything you've heard on this episode, like navigating new territory and your relationships, you can contact the National Dementia Helpline on 1800 100 500. We're available 24 hours a day, every day of the year. Give us a call.
[END OF RECORDED MATERIAL]
Episode 5 - Hold on to sleep – Why dementia disrupts sleep and what to do about it
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands in which we are meeting are many countries filled with languages, similar and different. For more than 50,000 years we have come together to trade knowledge to learn and to teach. Today, we join 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.
[Music plays, owl hoots, frogs croak.]
Jim: Oh. I've been awake since 2.30. Probably before then, but I had such vivid dreams. It's excruciatingly annoying how you wake up to these dreams that have sort of flashing lights in your brain, and images and things going on in your head. It's so hard to explain, but it's like watching a video on fast forward. You get to a point where you've just got to get up and get out of bed and go upstairs, make a drink and try and you know, distract yourself. You learn to live with it. But it really weighs heavy on you. It's tiring. And it's hard.
Hamish: Like lots of people living with dementia, Jim struggles to get a good night's sleep, though there are some things that help.
Jim: So yesterday, I had a sleeping tablet before I went to sleep. So I get really excited about that. It's the best day of the week for me. I do it a couple of times a week. And yeah, this morning, I've woken up at 5am. I've had literally a full night's sleep, so feel really revitalised and ready to start the day. So, it's so good when you do get that sleep. It's just, it's just the best.
[Music plays.]
Hamish: But even the sleeping tablets are not a silver bullet.
Jim: My neurologist prefers that I don't take too many sleeping tablets. One, because they become less effective. And secondly, the medication that I'm on for my brain for Alzheimer's is counteracted by the sleeping tablets, so that just doesn't help. So you have this relentless reoccurrence of bad sleep, bad sleep. There's no such thing as a full night's sleep
[Music plays.]
Hamish: Jim. I'm curious before you got your diagnosis with younger onset Alzheimer's, were you a good sleeper?
Jim: Oh yeah! I was a great sleeper. I used to, you know, generally get six, seven hours a night, quite happily.
Hamish: All that beauty sleep.
Jim: There you go: doesn't come from nothing. This is Hold the Moment a podcast from Dementia Australia full of real stories about life after diagnosis. I'm Jim .
Hamish: And I'm Hamish . My dad has found sleeping super-complicated since he's been diagnosed with Lewy body dementia. He'd been diagnosed previously with Parkinson's disease. There's a whole range of flow-on effects from that as well. Energy levels, cognition, heaps of stuff. Later in this episode, you're going to hear from a neuroscientist about why the nights can be so long when you're living with dementia. Plus, some tips to get you through to the next day.
Jim: But first, let's meet Ann, whose symptoms can cause some pretty strange things to happen in the night.
Ann: Hi, I'm Ann. I'm 71. I'm living with Lewy body dementia, and I believe I'm living well with it and try my hardest to get the best out of every day.
Hamish: Sometimes the nights, not so great.
Ann: That's why I said the days.
[Shared laughter.]
I live with my husband Timothy who is very supportive and we try and live as well as we possibly can.
Hamish: We're here to talk about sleep. But how does a rough night's sleep impact your days, Ann?
Ann: I find that you get up in the morning and you know I might then go back to bed after breakfast for a little while. I try not to sleep during the day, but it's almost being constantly tired. And so it's hard to do more than one thing in a day that requires too much, you know, a bit of grey matter movement and thinking. But I don't think I have slept through a night for - well, I couldn't remember when. But I've got dementia, so I wouldn't know anyway.
[Shared laughter.]
But, for example, last night, I had a terrible night. I had one series of dreams. And that was a bit, I get very, oh, I move a lot and hit Timothy. And he's quite used to it. He bears the bruises well, but then I went back, I was awake for a while. And it was about three o'clock. And I had this terrible feeling that there was a noise outside: a lot of noise outside. And I thought I heard a gunshot. I thought I said to Tim: “Can you get up and check that?” and I thought I saw him get up. But he hadn't moved at all, I noticed. Anyway, I, I thought I got up – well, in my dream or hallucination state, got up and went outside and checked it - and we're staying in a hotel. And across the way, I thought that that was where all the noise was coming from. There were three women out there. And they're all sort of fairly fierce-looking. And one of them had a fork, and she started to walk towards me. And I said: “No, I'm just here to make sure you're all alright. Is everything okay? I'm a nurse.” You know, if somebody's bleeding and dying, I can look after them. And anyway, with that, they just sort of kept walking towards me. And that's when Tim woke me up. Because I talk a lot, also in my dreams. So I get very dry mouth and whatever. And then Tim had to re-orientate me to the room and tell me what, where we were, what the doors were, and, and so forth.
Hamish: So this hallucination you're describing, is it worse because you're travelling at the moment, you’re interstate for this recording? Does the unfamiliar environment make much of a difference?
Ann: No, it happens at home too. I'll wake up, well, I'll have an hallucination. I call them hallucinations, because I can see the people. And then I'll sort of say: “Where am I?” And Tim will wake me up and say - and I’ll say: “But where does that door go to? What's, but isn't that the - which house are we in?” Then he wakes me up and I'm back to normal. Well, what is normal? And then I, you know, stay awake for a while. It's hard to get back to sleep often. And generally I'm okay then. But sometimes I'll have another one as well.
Hamish: So do you have any of this stuff, Jim?
Jim: I have - I dream in fast-forward now. So you know, if you were to watch a movie, and you see it being -it's like that, so it's almost panicky when you wake. So I find it distressing in that dream state that when I do wake, I just want to get up, to get away from it.
When you were diagnosed - which is a while ago - were these dreams apparent at the beginning, or are they something that have progressively got worse, as time’s gone on?
Ann: Initially, I didn't have dreams. I had restless legs and -
Jim: Which I suffer from too.
Ann: Yes. And throwing around my arms and things. And the dreams came later. And that was probably something that was more significant with the diagnosis of Lewy body dementia. And my mother-in-law had Lewy body dementia. And she used to constantly say: “There are ants in the pantry.” Well, there weren't any ants in the pantry: we’d check. And there was a mouse that used to visit her. Well, it didn't. And Tim stayed at her place and slept in her bed to see what happened.
Jim: What it was.
Ann: And nothing happened to him. But in the morning, she said: “You didn't have to get up in the middle of the night and go to the door and answer the door when those kids were there. They just ring the bell and run away.”
Jim: Yeah.
Ann: We just realised there's something more going on than ‘ants in the pantry’.
Hamish: My dad is living with Lewy body dementia.
Ann: Aaaah.
Hamish: So he has terrible sleep issues. Bit disrupted sleep at night, but then sleeps a lot, sleeps massively during the day: sometimes all day. But he also has these very vivid hallucinations which are a feature - as I understand it - of Lewy body dementia, but they’re totally real to him. And we can have a very lucid conversation, which is largely grounded in fact and reality, and then it'll move in and out of him telling me stories of where he's been in the Bavarian Alps, or -
Ann: Yes.
Jim: So it’s a little bit of memory mixed in with the dream.
Hamish: It's very - from the outside - it's very hard to know which bit is real, and which bit’s the hallucination.
Ann: It is for us too, you know. It's very hard at times for me to think, did that really happen? Have I really been there? Or not? We all have different pathways with our hallucinations, if we have them, or our dreams and things. And I think you have to realise that we're not gonna - yours won’t be the same as mine, necessarily, Jim, but they could be.
Jim: Yeah.
Ann: Or they may not develop any worse, or whatever. But I think it's just a matter of recognising that that's part and parcel of what's going to be happening. And to be believed.
Hamish: How scary is it for you?
Ann: Oh, it can be really scary. I can, I mean, there was a time when I had this multimodal hallucination.
Hamish: Which means?
Ann: Multimodal means: multimodal. Different: [laughs] various types of forms.
Hamish: You can smell it, you can touch it.
Ann: And I can, you know, feel it and all that. And I can see it. And I can feel the bed, when somebody's sitting next - down, you know how the bed goes down?
Hamish: Yeah.
Jim: That’s so scary.
Ann: And I can feel that. The first time it ever happened, I was absolutely freaked out. And from then on, it developed into these other forms of feeling and seeing things and this other thing had been - I referred to it as a rude word, because it used to recur – and I called it ‘the bastard’.
Because this black, round thing, kept – like one of those exercise balls with its spikes on it – it kept sort of appearing in dreams and coming towards me and trying to – well I felt it was trying to scare me. And I thought, well, it would whoosh around in front of me. And one day, I thought: “No, I'm gonna catch you.” And I grabbed it and squeezed it. And it exploded into a whole mass of black, ethery, whatever – and just disappeared into the, into the sunset. And I thought, “ohhhh!”. You know, I was absolutely petrified doing it. But I thought: “Look, you've been driving me mad for nights. And I’ve had it.”
Hamish: And so when you're describing this to us now, is your memory of it still as real as -
Ann: Yeah.
Hamish: It was?
Ann: Yes, it is. It's almost as if it's happened again.
Hamish: Even though you know -
Ann: I know that it didn't. Yes, yes, exactly.
[Music plays.]
Hamish: The hallucinations Ann experiences won't necessarily happen for everyone living with dementia. But if they do, how the people around them react is really important.
Stephanie: It's very important for the carer not to dismiss that, because what's happening is very real to the individual living with dementia. It’s very important that the carer helps the individual living with dementia get through that and saying something - if they're having a conversation with their mum, to say: “Oh, your mum was a wonderful person. I'd like to speak to her too.” Or if there's something that's happening in the background - like the television, there's some violent program on television - get rid of that background noise, create a calming environment, distract the individual basically. So my name is Stephanie Rainey-Smith, I'm an associate professor in the Centre for Healthy Ageing at Murdoch University, and Alzheimer’s Research Australia.
Hamish: So Stephanie, what causes these hallucinations to happen?
Stephanie: It’s generally just the changes that are happening to the brain. So that the regions of the brain that are associated with understanding your surroundings, your environment and separating out from reality what's happening now from past events sometimes. And that can also happen, for example, when individuals get very confused and disoriented at night. They’re having a vivid dream. And then when they wake up, they can't distinguish between the dream and reality. So it can be very confusing and disorienting for the individual.
Hamish: Can you explain for me the connection between dementia and sleep? Is there an easy way of explaining the connection?
Stephanie: Well, what we know now is that there is what we call a bidirectional relationship between sleep and dementia. So we know certainly that as someone starts to develop dementia, problems with their sleep is one of the first complaints that they attend their GP with or their treating doctor. And in addition to that, as the disease progresses, sleep becomes worse. But we're also starting to understand that not only is it a symptom of the disease, but also in earlier life, poor sleep can increase your likelihood of developing dementia.
Hamish: Okay, poor sleep can increase your chances of being diagnosed with dementia.
Stephanie: Yes, we believe so. The evidence is certainly stacking up to suggest that that's the case.
Hamish: Can you tease that out? Like what sort of features of poor sleep might contribute? Do you know why?
Stephanie: So we know that sleep is really important for processing the information that you accumulate during the day. It's also really important for laying down memories in the brain, and also for restoration - as we know getting rest and repair. But also, it's very important for clearing toxins out from the brain whilst you're sleeping. And these toxins can accumulate during the day. And we know that some of those toxins are related to dementia. And for example, in the case of dementia due to Alzheimer's disease there’s a particular protein called beta amyloid that accumulates in the brain and kills the brain cells. And when someone is having poor sleep, if we liken it to a housekeeping system, there isn't enough time to sweep all the amyloid out of the brain: it starts to accumulate. And this creates a toxic environment that can contribute to death of brain cells.
Hamish: So aside from poor sleep, it seems like lots of dementia symptoms can be worse at night. What is it about the night-time that can exacerbate these things?
Stephanie: So in the case of dementia, there's something that's referred to as ‘sundowning’. And that means that in the evening, and at night-time, some of the symptoms seem to get worse, and they do get worse. And this can include things like pacing, agitation, problems with sleep, and also hallucinations. And some of the confusion and disorientation can be related to shadows. For example, as the light levels, natural light levels are dropping, shadows are created, and the brain doesn't know how to process those shadows. And it can create some anxiety and stress for the individual who's experiencing dementia. And also, at night-time when they wake up and they don't know if they've just had a vivid dream that they can't understand, and differentiate between the dream and reality. So that becomes confusing. And also if there's low levels of light in the room that they're in, it can be quite frightening. They don't know where they are straightaway, or they can't recognise things. Or even if it's a familiar environment, the way that things look when the lights are off can be very different. And all of that contributes to the confusion and disorientation.
Hamish: Do different forms of dementia impact sleep differently?
Stephanie: Yes, they do. So for example, with Alzheimer's disease, people have a sleep that's fragmented, so they can't stay asleep very easily. So sometimes they have trouble falling asleep. But once they're asleep, they wake up often. Whereas in other types of dementia, such as vascular dementia, people often feel excessively sleepy. So they might have a lot more sleep. Whereas in in dementia with Lewy bodies, people can complain sometimes of having something called REM sleep behaviour disorder. And that's when people act out their dreams. And that can be very confronting for the individual living with dementia, but also for their caregiver.
Hamish: It sounds very confusing, because all of these things seem to be perpetuating the other things, right?
Stephanie: That's right. It’s almost like a feed-forward loop. You've got the symptoms of all the hallmarks as you like, of the disease that are accumulating in the brain that contribute to the disruptive sleep. Then the disrupted sleep itself contributes to more of those hallmarks building up within the brain. And then you add on the complexities of the medications on top of that: it can be very difficult for individuals living with dementia to deal with and to cope with.
Hamish: So does this then cause or contribute to some of the other things that people living with various forms of dementia experience, like depression and anxiety?
Stephanie: So we know that sleep is really, really important for regulating mood. And there's actually something that's called ‘the misery cycle’, which is rather badly named, where it describes how mood and sleep are intricately related. And that's because the brain regions that are involved in controlling mood are closely linked to those that are involved in sleep.
Hamish: I mean, I know you're saying it's badly named ‘the misery loop’, but if you're living through it, presumably, it's a pretty apt description.
Stephanie: That's right and it's also no fun for the carer as well, who is having to deal with a loved one who is up at night, or acting out their dreams. It can be very distressing for everybody.
[Music plays.]
Jim: Ah. The misery cycle: I think I've felt that before. And I know Ann has too. Let's go and see what works for Ann to break that loop of bad sleep.
[Music plays.]
Ann: I do use sleeping tablets and generally can get off to sleep fairly easily. But it's the waking and then often lying awake, and just having to sort of know that, well I'm in bed, and I'm resting, so I can do some resting and relaxation, if I think of it. But it's a bit touch and go. If it's early enough in the night and I'm awake again, I might take another half a sleeping tablet or something. But a lot of people would deal with it differently. I don't have a set time for going to bed. I usually wait till I'm tired, because I don't really like the idea of sleeping at night, for obvious reasons.
Hamish: As in you’re scared about what might happen?
Ann: As in, yes, I'll never know if it's going to be a good night or a bad night. And so it's just – mine’s a bit trial and error.
Jim: It's a really sad thing to come to terms with, because we all sleep. I mean, Hamish, how many hours would you say you get as a very busy journalist?
Hamish: Seven, eight.
Jim: Seven, eight. And the thought of going to bed and not getting that sleep?
Hamish: Yeah.
Jim: And is it gonna be a terrifying night? Am I going to be exhausted? Are my batteries going to be charged so I can address what I've got to do the next day and deal all with all of that internally. It's frustrating.
Hamish: So do you have a strategy Ann for trying to get back to sleep? Or do you just accept that you're awake?
Ann: I accept I'm awake. And I don't think that's a very good strategy. But it's what works for me. I just know that I used to listen to the radio, but terrible night-time radio [laughter] and talkback and I thought “no, thank you”. And that sort of makes you more alert. And I don't want to be, I don't want to be stimulated. I want to be just left.
Hamish: Because you FaceTime family in the UK, right? In the early hours?
Jim: Yeah.
Hamish: That's something you do to cope.
Jim: Yeah. And that's quite difficult sometimes. Because if you’re up at those times, you can FaceTime. And then when you're not, they almost get reliant that you're going to be up in those hours, you know, and you're not. My sister rang me recently, I think three in the morning. And I said “it's three in the morning”, she said: “I thought you’d be up”. But I was, of course, asleep at the time.
Hamish: Do you notice that when you've had a really bad night's sleep, that it impacts the way your brain functions the next day?
Ann: Totally. Particularly, if it's a really frightening evening/night. I feel fuzzy the next day of, you know, things aren't as easy to accomplish as they were before. I won't feel like going out very much at all. A lot of what I do is forced, to go out because I know you have to. And you probably understand that too. Because you know, if you don't go out, it's not good for you.
Jim: I think it affects your mood as well, the next day, when you've, you know, you've been through a very tiring night. And, you know, perhaps you've got a big day or things on that day and you want to be fresh, or, you know, as you normally used to be. And now I sort of almost - not get panicky - but in prep for the day when I've got things to do, I really want to have that big sleep. So I have sleeping tablets occasionally through the week and I’ll pick them out to try and have the best night's sleep, to attack whatever it might be that's falling on a certain day. Do you find it affects your energy level a lot? And you have to sort of plan what you're doing, like this for example?
Ann: Well, I've got used to having to function on less sleep than normal. And it is hard to do the things that I do, because I do quite a lot for Dementia Australia. And I'm involved in a lot of committees, nationally and internationally, which is terrific, because I think that's great for my brain and I love it. But that's not always easy. And sometimes it's a real chore to get organised to do those things. And if you've had a bad night, it's quite likely that you're going to have to push yourself and so you can only do that one thing in that day. And then you sort of just flake at the end of the day.
[Music plays.]
Jim: I actually feel a lot better this morning, I woke up a couple of times in the night - was able to go back to sleep - but I feel a bit more rested. And I think that was because yesterday, I had a really good meditation yoga class with Matt, the yoga guy that I have lessons with. And it just seemed to help me feel more rested and a little bit more relaxed.
[Music plays and birds chirp.]
Hamish: Other than the occasional sleeping tablet, yoga and meditation can help Jim get a proper night's rest. Stephanie has a few other tips, you can try, too.
Stephanie: Things like making sure that your bedroom is at a comfortable temperature for sleep. Also ensuring that you might eat more at lunchtime and have a lighter meal closer to evening-time. As well as not having too much alcohol intake or caffeine. It’s really important to get exposure to daylight. And this is because when individuals are experiencing dementia, they actually have their body clock (which governs when they're awake and when they're asleep) can be quite confused. And so getting out into natural sunlight can help the body to understand when it should be awake and when it's time for sleep. And also undertaking some physical activity. Even just 10 minutes of being physically active a day has been shown to improve sleep. And if that's not helping, then it might be time to start looking at some types of medications.
Hamish: So just a bit of you know, constructive management strategy stuff. I know you mentioned some already. But I mean, what do you do to give yourself a good night's sleep? You must think about this quite a lot. How do you prepare yourself for sleep?
Stephanie: So it's really important that you have a routine. So regardless of how well you've slept the night before, even if you've had a really bad night's sleep, it's important that you get up the same time each day. It's also important that you go to bed at the same time each night. And that's about making your body understand when you should be awake, when you should be asleep and also getting some daylight. So go for a walk to get your coffee. Even if it's five or 10 minutes, you know, get out there for a brisk walk or a brisk walk at lunchtime if you can. So then you you're getting two factors there, you're getting the physical activity, which helps you sleep better at nighttime. And also you're getting the exposure to sunlight. And don't have too much alcohol, because people always seem to think that they sleep better when they're having alcohol. But the type of sleep that they have is not good quality sleep.
[Music plays.]
Jim: If you need some advice on how to better manage your sleep, or you just want someone to talk to in the middle of the night, you can call the National Dementia Helpline and talk to an advisor like Kristin, they're on the other end of the phone 24 hours a day and night and they're here to help.
Kristin: It's great that you've noticed that your sleep is changing and you're wondering what might be causing it. Your GP is a great place to go to talk about all of the things that could be impacting sleep. And it's really important you talk with your GP about changing anything like medication. If you notice that sleep is something that's difficult for you on a regular basis, maybe you want to create a little soft spot in your house, a place that has things that make you feel good, something like music, soft music that you could listen to, or a photo album of some of your favourite people, a place that's quiet and soft, and might help you feel comfortable again. If you've got any questions or you want to talk to somebody about anything you've heard on this episode, or how to get through a sleepless night, you can contact the National Dementia Helpline on 1800 100 500. You'll get to speak to an advisor, like me, and we're here 24 hours a day, every day of the year.
[Music plays.]
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 and
Hamish: by me, Hamish. The executive producers are Kellie Reardon and Grace Pashley. The producer is Liam Riordon, sound designed 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.
[END OF RECORDED MATERIAL]
Disjointed sleep is one symptom people living with dementia may encounter. And if your sleep is suffering, you’ll feel the impacts in your waking hours too. So what can you do about it?
Bonus - Helpline: Tips for managing changes in sleep with a dementia diagnosis
What to do when your diagnosis is getting in the way of a good night’s sleep.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: We all need a good night's sleep to live a healthy life. But after a dementia diagnosis, the long, dark hours can be so challenging. I'm Jim Rogers, and this is Hold the Moment, a podcast from Dementia Australia. Since my own diagnosis of younger onset Alzheimer's, I often wake up sometimes a little disorientated or unsure of my surroundings. Some of you might be experiencing bad dreams as well. We've done a whole episode of Hold the Moment about sleep. You'll meet Ann, who's spent a lot of time trying to get better rest. And if you haven't heard that episode yet, do find it in your podcast feed. But this is our sleep bonus episode, with advice from the National Dementia Helpline - a free service available 24 hours a day, if you need some support. Here's one of their advisors Kristin, with some tips for a better night's sleep.
Kristin: When you wake up in the night, you might feel a bit confused and disoriented and that can feel a bit scary. There are some things that you might want to try that help you feel more comfortable when you wake up in the night. Leaving on a nightlight that guides you towards the toilet, or a favourite reading chair or a place where you might listen to some music. It might also be helpful if you start to feel confused or disoriented. Just take a moment to close your eyes. Take a breath. And as your worries melt a little bit, it might feel easier to figure out what to do next. [Music plays.] It might be helpful to keep your bedroom as clear as possible. It'll make it easier for you to navigate if you need to leave your room. And it might be less confusing with unusual shadows or shapes. If you find that you are waking up in the night, you could make some plans so that you already know ahead of time that this might happen. During the day, you could get together some of the things that help you relax, that make you feel good.
Maybe you've got a favourite chair, a favourite blanket, photos of some of your favourite people. And you could put them there, ready. So any night that you wake up, and you're not feeling 100 per cent, you've got a place that you can go to where you can feel good, and feel safe. It's great that you've noticed that your sleep is changing and you're wondering what might be causing it. Your GP is a great place to go, to talk about all of the things that could be impacting sleep. And it's really important you talk with your GP about changing anything like medication. Your GP knows you really well and can look holistically at all of the things that could be impacting on sleep and come up with a plan to improve it for you. If you've got any questions, or you want to talk to somebody about anything you've heard on this episode, or how to get through a sleepless night, you can contact the National Dementia Helpline on 1800 100 500. You'll get to speak to an advisor like me and we're here 24 hours a day, every day of the year.
[END OF RECORDED MATERIAL]
Episode 6 - Hold on to travel - Navigating planes, trains and automobiles with dementia
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. 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 join 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.
Airplane announcement: Ladies and gentlemen, we have started our descent.
[Music and traffic noises.]
Jim: We're just checking in at the hotel. It was quite crazy in Bangkok airport and the traffic was crazy. But now we're here and just waiting to go to our room.
[Music and sound of door unlocking]
I just noticed that when I was trying to pack all the cases, it was like they just looked chaotic. Like it was just - normally I'd be very organised and have a system of some kind, but everything was just sort of stuffed in everywhere. And when I looked at it at the end, I don't really know what I was doing shoving everything in. I've always loved travelling, I love seeing new places and having the chance to switch off and unwind. I'm so grateful to be able to see the world and I've only added more destinations to my bucket list since being diagnosed with younger onset Alzheimer's. But that doesn't mean navigating airports or packing a suitcase is easy for people with dementia. And if you lose your licence, it makes it even harder to get around town. I'm Jim and this is Hold the Moment: a podcast from Dementia Australia about life after diagnosis. My co-host for this series is journalist, Hamish. And his father has Lewy body dementia, so he knows a lot about this as well. As you've heard, I've just returned from a holiday overseas with my husband, Tyler. So I'm catching up with my friend Hamish to share some of my holiday stories about the trip and to talk about how I manage my travel, now I've got dementia.
Hamish: G'day mate.
Jim: G'day Hamish. So good to see you.
Hamish: I mean that was half a try at an Australian accent. I don't know.
Jim: No, there's definitely no Australian accent there: it's very British. I cannot lose this accent.
Hamish: How was the trip?
Jim: It was fantastic. Yeah, we had a really good time. A lot of fun things and very hot. It was very hot there.
Hamish: As hot as here?
Jim: Hotter.
Hamish: So tell me who you went to Thailand with?
Jim: I went with my husband, Tyler, and our very close friends Caroline and Nat, who are from Perth.
Hamish: Tell me about the accent? Where is it from?
Jim: It's beautiful isn't it, this accent? You can't get much worse. I'm from a town called Redditch, which nobody would really know, unless you're British. But it's just outside Stratford-upon-Avon, which is much nicer.
Hamish: Is that part of you know, the appetite for travel, the fact that you are from overseas, you obviously live on the other side of the world?
Jim: Well, we've... I've always travelled a lot, always, ever since I was... I always travelled a lot with my parents and then travelled a lot as a teen. And then, you know, I've always enjoyed travelling, and there's a very British thing that you want to get out of the country, to have a holiday. So when you do come to Australia, the vastness of the country; we've seen quite a lot of it, you know, the various cities, etcetera. But we still have this ideology that you leave the country to have a complete break. And so, there's so many places that are out there to see.
Hamish: And mentally, what's the thing for you about being elsewhere?
Jim: Well, I suppose when you leave and you go somewhere else, it's quite a switch off. It's as though you just really, totally go into holiday mode and you leave everything behind. So you sort of try to put it out of your head a little bit and have a break, and read and relax and...
Hamish: Was travelling this time any different for you?
Jim: It's not hugely different, but I'm very reliant on Ty for travel now. I used to be very much at the forefront to, you know go check in, and check in online - those things I just, I just can't seem to do and I don't feel confident to do now. So I'm more of a puppy that's just behind him. Also going through chaotic airports, I don't feel uncomfortable if I'm with him, because I just literally, I'm following him.
Hamish: When they were in Thailand, Jim relied on his husband Ty, plus his friends, Caroline and Nat, to navigate all sorts of things: making sure he had his passport, that his medications were packed. But also simple things: like ordering food, booking a taxi.
Jim: I'm more of a follower now, just happy to just follow. Even when we go anywhere, you may not even notice, but I genuinely am following where you're going.
Caroline: I'm doing that in the trip. [Laughter] No, I am.
Jim: Rather than trying to lead the way, I just prefer to step back and follow where we're going and let you pick the table, let you pick the drinks, even on the menu. I prefer for Tyler to pick the food. I don't want to think. And sometimes I keep looking at the menu - looking and looking and looking and looking - and I still can't make a decision or decide or work out what I actually want. So soon as he chooses something, I jump on it and go "ooh, that sounds..." I just copy really.
Hamish: What you were describing about you're not doing the online check in anymore, really, and you're hanging back. That sounds quite familiar to me with my dad, because (not that he's doing overseas travel), but there's technical stuff that I know he can do. But he seems to be opting not to, unless I'm there helping him with it.
Jim: A hundred percent.
Hamish: Can you just explain what on earth is going on there? Because I find it so frustrating. I'm like, I know you can, I know you can do this.
Jim: Yeah, I fully, fully understand what he how he feels and what what's happening with him. I can't explain it, I can only say that, you know, what I know, really familiar with is fine. But anything new or slightly different or something I've got to learn. Like, it's like I can't retain it or store it and it's fearful. It's fearful to me. So...
Hamish: Is it that you can't problem-solve?
Jim: It's like, it's like, it's almost as though someone's squeezing your head. Because you just can't absorb this new stuff that you've got to do. It's too hard. And it sounds dramatic or ridiculous. But it's just, it's just too much.
Hamish: Tell me about familiarity of environment, though. Because even though you've been to Thailand before, and you're with people that you know, just explain what it's like being in a really unfamiliar environment, living with what you are.
Jim: The worst things are, with this comes a lot of sleepless nights and very poor sleep. So in the night when you wake up, there is a startling 30 seconds of 'where am I?' like, 'I want to nip to the loo'. 'How do I get to the loo?' So there's a panic, for a minute. So almost sort of wake and sit on the side of the bed for about 30 seconds to really check where I am. Ty always makes sure there is some form of light in the room. So it's never, never pitch black. If you said to me nip to the room and get your stuff, that would probably be a bit overwhelming to think, 'okay, what's the room number? No idea. What is the floor of the hotel? No idea.' I know there's 60 floors there, but I can't remember what floor we were on. But it's like, if you, you know, there was on one occasion where I was somewhere and they asked for the room number and I had just had no idea what it was. Well, that just literally leads to you just feeling thick and stupid. That's how I feel. Because how hard is it to remember it? You know, but you those things just don't. It's the information goes in. And then it just drips out and you can put it back in again and it drips back out. And it's just frustrating.
Hamish: If I were to say, go home and pack your bags, you're going on a holiday, how would you go with that?
Jim: Ty would really be the one who would take a lead in packing, normally. So I do those things but I do find I'm going to him a lot saying "what else do we need?" Or sometimes getting a bit confused about what's going in and then what I've packed: I've forgotten what's in there. So definitely he's got to oversee, to double check: truth be told probably needs to empty out and start again and check. So I think I've done this amazing job, but and I go "it's all done, done" you know and then he's literally like "there's no socks". So he'll go through and overview things. So, I think...
Hamish: It's Thailand. Why do you need socks?
Jim: I don't know. I don't know. Even inside if you wear trainers you still gonna need some socks - hidden ones. [Music plays.] So relaxing, I love Koh Samui. We've had such a nice time, haven't we so far? We're just at a little beach bar just outside the hotel, right on the water's edge. We're very blessed to be on this island. And that view is just to die for: turquoise water, white sand. And this is so relaxing and therapeutic for the mind, when you do get these moments. Makes you feel so grateful. So cheers, to our holiday so far. [Glasses clink.]
Hamish: It's not just trips overseas that are more challenging with dementia. Just getting around town can be a logistical nightmare. Especially if, like Jim, one of the consequences of your diagnosis is losing your driver's licence.
Jim: I think I was just speechless. And I challenged it and felt very... I was so shocked and just couldn't understand why couldn't I drive? And apparently, with the form of Alzheimer's that I've got, it can affect your decision-making, during your driving. So, I suppose, to cut long story short, you can take a left when you should go right. You could go through a green light and believe it's a red light, or vice versa, whichever way around that is.
Hamish: Oh, where are you at on the whole idea of being driven around and being reliant on other people just to do basic things?
Jim: Hate it. I absolutely hate it. And my kids say "you can get Ubers" you know, "you can get a taxi''. "There's no problem," which I can. It's very nice to be picked up and stuff. But it's not like you getting behind the wheel and being in charge of your own journey. You know, if you want to nip into this coffee shop or pop into Woollies, or wherever it might be. You just, you're reliant always on someone else.
[Recorded voice.] "Hi, thanks for calling 13cabs. This is your first call with us, so please listen closely. To get a taxi now, press one; to schedule a pre-booking, press two."
Juanita: I'll put my bag in the middle so it's not on my feet.
Jim: This is Juanita. She's travelling to the studio by taxi. Juanita lives alone and like most of us with dementia, she had to give up a driver's licence when she was diagnosed with frontotemporal dementia back in 2019.
Juanita: I don't mind being on my own a bit, but I don't like it when I'm on my own for a whole week and only ever see someone online. That's a little bit too much alone-time. I'm not like, I'm not a outside going-out sort of person like my oldest son, who's just, a person he's just met is his friend. He's that type of person. I'm the opposite. But I still need some people. I really only got my licence in the, in my 40s. So yeah, I drove for about 10 years before I had to give it up. Even though I didn't drive for that long it was... I miss it. When I moved here, with bad knees, you know it was, it got more and more difficult for me to get to public transport. When it actually came, it was a shock, because I knew I could drive. I had been driving and I had been safely driving because I'd limit my driving to safe conditions, safe distances. But it gave me... I could go to the shops, I could go to the local things and it gave me independence. And just to have that suddenly whipped out away from you is really hard. When you're used to just being able, if you feel like going for, go to Maccas for a coffee at three in the morning, well you can – that type of thing. But now, you've got to have your weeks planned, when I'm going to do something. When I've actually got wheels to get there. Yes. So, it is hard.
Jim: Without your licence, those day-to-day activities can become a real chore.
Juanita: When I do my groceries, I either order them online or I go with a support worker, because that's the only way I can do it. There is buses in the area, but with my bad knees, walking to the buses is an issue. So, I can walk up to the Inala shopping centres, but I'll have to get a taxi back. I can't do both ways. [Music plays.] You go back (as far as I can remember back) there was someone in the family with dementia: goes back to my great grandfather, who I met very briefly as a 15 month older. My absolute first memory...
Jim: Wow.
Juanita: ...is of dementia.
Jim: Wow.
Juanita: Yes, so we didn't find about the genetic link until Dad had already lost three siblings to it.
Jim: When did you start to experience your own symptoms of dementia? When did you start to notice them yourself? How long ago?
Juanita: I'd found out in 2018 that I had the mutation. At the time I was being tested. I was pseudo-thinking that it may be happening. It was just sort of like, is it or is it not? It was that sort of thing.
Jim: Yeah.
Juanita: Enough that I'd actually told the genetic counselors that I think I might be having symptoms. Yeah, so it was very, I was very close to it. And I read just about every scientific article I could find on the dementia, or the mutation. And funnily, I came across the diagnostic criteria's for the type of dementia I've got.
Jim: OK
Juanita: What the doctor is actually looking for. So as soon as I saw that in myself...
Jim: You recognised it.
Juanita: I recognised it: it's worth having it checked out. Yeah. And at the time, the doctor said to me, I've never diagnosed anyone that early. Just because I was proactive.
Jim: Yeah. What are some of the symptoms that you would say, are from frontotemporal dementia? The dementia that you've got? What are the sorts of things that you're experiencing now?
Juanita: Well, the thing that I first noticed, and I think is probably one of my bigger things now, is ultra-distractibility. Not that I can't concentrate on a task, but if anything breaks my concentration, I'll never get back to that task.
Jim: Yeah, I fully understand that. Because you go to something, for example, you think "I'm gonna water that plant". You go and get a watering can. And then you notice something else that you're thinking about. And suddenly you go off and do that, and you get in a whole new world of whatever it is you've gone to do.
Juanita: I've had days when I'd get to the end of the day, and had nothing started, let alone completed because of that. Yeah. But you've got a choice of laughing or crying.
Jim: A hundred per cent.
Juanita: And I've just got to the stage where “oh: I'll do it again - ha ha”. You know, you just laugh at yourself.
Jim: Yeah, I think so. You've just got to go with it.
Juanita: Because when you realise what you're doing, then what can you do? You can't undo what's happened in your brain, you've just got to laugh at what's happening.
Jim: Sometimes it's just really hard to find a lighter side of things. How did you feel Juanita when you had to hand your driver's licence over?
Juanita: Oh! It is... you lose your independence. Instead of being able to do things when you want to do them, you've got to plan it a week ahead or two weeks ahead. Not when you need it. That's so much different.
Jim: And there's also that feeling of spontaneity of when you want to just do something, when you want to do it, where you want to go, on your own, just as and when - and it's just it's a very controlled thing where you need to have somebody pick you up or somebody be with you. It's just, it changes the whole dynamic of the way you feel about yourself: it knocks your confidence a little bit. Do you find that?
Juanita: Look, I don't think it knocks my confidence. My confidence is in myself.
Jim: Yeah.
Juanita: But it does knock my independence. I don't have the choice to do it when I need to do it, I have to choose to go when I've got somebody else's wheels.
Jim: And how about the actual journey itself? Do you have to pre-plan quite a bit to try and make sure you've got everything arranged? Or do you get any sort of confusion with where you're going, if you don't pre-plan?
Juanita: If I've got, I'm going to be taking a taxi by myself, I have to pre-plan when I'm going to book it and that sort of thing. I have to work out time to get the taxi there. You know, that type of thing?
Jim: Yeah.
Juanita: Of course. Yeah, it's, there's all little things like that you've got to plan, but I think it's more the one-off things that you've got to remember. "What am I going to need today when I'm going out? And what times am I going out for" and that sort of thing.
Jim: So you do quite a bit of advocacy work. When you do travel for your various things that you're attending to, is there anything you particularly notice with airports that could be quite difficult? Or is there anything you find that helps you during that travel?
Juanita: Yeah, well look, until I until I found out about this 'hidden disability' lanyard, it was a big issue. Because of not just the dementia, but the arthritis. You get to the airport, you got to go through a screening and you’re on your feet for it seems like hours before you get to where you're going. Yeah. With this lanyard, it makes such, much a difference. The scheme actually came from Europe: there, it's very widespread. But in Australia, it's mostly the airports. But the staff in the airports, the airline staff know about it. And what this, this lanyard says to them, to those who are trained: this person has a hidden disability, it doesn't say what it is. It doesn't shout it to anybody else. But for those who need to help you, they need to know that you have a disability.
Jim: Okay.
Juanita: That may not be visible.
Jim: Yeah, I had no idea about that. So that's, that's particularly helpful, particularly for those people that you know, can get lost or confused. Or any disability really.
Juanita: It's any disability that might not be visible to someone.
Jim: Yeah.
Juanita: At a glance.
Jim: That's amazing.
Juanita: And the good thing about it, you can wear it like this, but it's also got the back where you can say what my disability is, what I need, who my support person you need to contact, how to contact them.
Jim: Yeah.
Juanita: So when I've got this, I go to the, you know, the screening: they see I've got a lanyard, and one of the staff will come through and ''what do you need, is there something we can help?'' and I'd explain what my needs are, they'll take you around so you don't have to stand in the line forever.
Jim: Oh, really? So they're almost fast-track you through a little bit to help you, you know, not be waiting around and get fatigued.
Juanita: Yeah, that sort of thing, yeah. So, but also, I often, although I'm not wheelchair-bound, I get a wheelchair, just in case I've got to go a long way.
Jim: Yeah.
Juanita: And having this lanyard actually sort of gives it, makes it such that people don't look at you and say “what do you need a wheelchair?”, you know?
Jim: Yeah, and this is the problem a lot of people don't really, unless it's visible that disability instantly unless there's some particular thing that they can see, often people don't really understand that, you know, there can be more complex issues behind what that person is experiencing. So, that that is a fantastic idea.
Juanita: I think anybody who has dementia that is travelling really needs to have it. It's very useful.
Hamish: That sunflower lanyard's a pretty great tool - have you tried one out yet, Jim?
Jim: No, not yet. But I think it's a great idea and it's ideal for people who are looking to travel.
Hamish: We're going to put some more information on how to get a hold of one in the show notes. If you're after more specialised tips for travel, you can also call the National Dementia Helpline and talk to an advisor like Kristin.
Kristin: If air travel is something that you're used to and familiar with, it might be quite easy to consider planning the trip. If this is your first time travelling by air, it might be helpful to have a travel companion come along with you. Some things to consider when you're travelling in an airport is the time of day that you travel. You might have a time of day that's better for you where you're feeling more confident in navigating new situations. It might also be that the airport you're going to has a time of day that's a little quieter; might make it easier for you to navigate. Many airlines and some airports do offer services such as greeting you, even at the door, to be able to help you navigate through the airport. If that's something you think would be helpful for you, reach out to the airline or the airport to find out if that's something they offer. It's really important that you're still able to get out into the community. And one of those ways might be using public transport. If using public transport is something that you do regularly, you may have already built a relationship with the bus driver, or you may regularly ask for the same taxi driver to help you get around. Those are great strategies for being able to give you confidence in navigating public transport. If you're going to be going someplace new, it might be helpful to try the route a couple of times with a friend or family member that you trust. It might be helpful to print off a map or a list of the stops. At Dementia Australia, we've got a webinar that talks about the impact of not being able to drive anymore. And that's something that you could check out on our website and get some further ideas for ways to get where you want to go and do the things that you want to do. Even if you're not the one that's able to drive yourself there. If you've got any questions or you'd like support and making plans for travelling, you can contact the National Dementia Helpline on 1800 100 500. We're here 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 dementia.org.au and don't forget to follow Hold the Moment on your podcast app, so you don't miss an episode. The show is hosted by me Jim and…
Hamish: …by me, Hamish . The executive producers are Kellie Riordan and Grace Pashley. The producer is Liam Riordan; sound designed 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.
[END OF RECORDED MATERIAL]
Whether it’s ticking off overseas travel bucket lists or simply travelling across town, getting around can take a bit of extra planning when you’re living with dementia. Hear stories of travel adventures and strategies for getting about independently while living with dementia.
Bonus - Helpline: Tips for getting around with dementia
How to get around town while living with dementia.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: There's something special about travelling, experiencing a whole new world, with different sights, sounds and smells. But since my diagnosis of younger onset Alzheimer's, finding my way around airports and train stations is a challenge. And then, there's also the dilemma of getting around town if you've lost your driver's licence, too. I'm Jim Rogers, and this is Hold the Moment, a podcast from Dementia Australia. You can listen to our full episode on Travelling in your podcast app right now. Maybe have a friend or family member help you access the episode if you need. This is a bonus episode, to help with tips on how to get around town or take a trip. You can get advice from the National Dementia Helpline 24 hours a day, any day of the year.
Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us, you'll speak to someone like me. It can be frustrating coming up with new routines when you've been diagnosed with dementia. Because you might remember a time when you could just decide to go to the shops and grab everything on your way out the door. It might take a little more planning now, you might need to book the taxi in advance for the time that you want to be picked up. And if there's a time of day where you know that you can better organise yourself, that might be a good time to put the bags by the front door. You might put your grocery list in your shoes, so that you really find it easier to take things with you. One other trick is to keep things visible. So if you keep your grab bags in a place where you're likely to see them on your way, you're more likely to grab them as you go. If you're no longer able to drive after a diagnosis of dementia, it can feel like you've lost a piece of your identity; a piece of your spontaneity. And there's a grief involved with that. There's also the important part of being out in the community, having your independence, being able to still engage in the things that you want to do. In order to do that, you might need to make other plans. At Dementia Australia, we've got a webinar that talks about the impact of not being able to drive anymore. And that's something that you could check out on our website and get some further ideas for ways to get where you want to go and do the things that you want to do. Even if you're not the one that's able to drive yourself there. It's really important that you're still able to get out into the community and one of those ways might be using public transport. If using public transport is something that you do regularly, you may have already built a relationship with the bus driver, or you may regularly ask for the same taxi driver to help you get around. Those are great strategies for being able to give you confidence in navigating public transport. If you're going to be going someplace new, it might be helpful to try the route a couple of times with a friend or family member that you trust. It might be helpful to print off a map or a list of the stops. It might also be helpful to plot ahead of time. If you do get lost, how will you get back to where you're going? Things always happen on public transport. You might get off at the wrong stop, or not quite be sure of what's going on. You can always ask for help: look for someone in a transport uniform or a high-vis vest and just let them know you're not sure about what's going on. People are always willing to help: you just have to ask. If air travel is something that you're used to and familiar with, it might be quite easy to consider planning the trip. If this is your first time travelling by air, it might be helpful to have a travel companion come along with you. Some things to consider when you're travelling in an airport is the time of day that you travel. You might have a time of day that's better for you, where you're feeling more confident in navigating new situations. It might also be that the airport you're going to has a time of day that's a little quieter. Many airlines and some airports do offer services such as greeting you, even at the door, to be able to help you navigate through the airport. If that's something you think would be helpful for you, reach out to the airline or the airport, to find out if that's something they offer. It can be helpful to bring the tools that you use in your day-to-day life with you along on your travels, to help you navigate a new situation. If there are things that make you feel comfortable at home: a familiar pillowcase, or a watch that always works for you, you want to make sure that you pack those. If you use a nightlight to help you navigate to the bathroom at night, if you leave doors propped open, you might want to pack a nightlight, or a doorstop to help you continue to use the tools that you do at home while you're out on an adventure. If you've got any questions or you'd like support in making plans for travelling, you can contact the National Dementia Helpline on 1800 100 500. You'll get to speak to an advisor: someone like me. We're here 24 hours a day, every day of the year.
[END OF RECORDED MATERIAL]
Episode 7 - Hold on to family – Families reflect on the impact of a loved one’s dementia diagnosis
Transcript
[Beginning of recorded material]
Kevyn: Hello. My name is Kevyn. 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 join 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.
[Music plays.]
Jim: Hey Mag, shall we go and get the coloured Play-Doh out?
Maggie: Yep.
Jim: Which colours do you like?
Maggie: The green.
Jim: Green? Where's the green?
Maggie: Here!
Jim: Okay, what is it you're doing?
Maggie: Putting this, putting green in here.
Jim: Okay. How do you do it?
Maggie: Like this.
Jim: Ah. What's happened?
Maggie: It's all mixed in!
Jim: Pink - and what other colour?
Maggie: Pink and blue! It's a lollipop.
Jim: Looks like a lolly. You could make a round bit and put it on the top, roll that up with your hands. Do you remember how to roll it into a ball? That's clever.
Maggie: Carefully. This is easy.
[Music plays.]
Hamish: That's Jim , doing what so many grandparents love to do, caring for his three-year-old granddaughter. Her name's Maggie. Except his situation is a little different from most. Jim is living with younger onset Alzheimer's. I'm Hamish and this is Hold the Moment. It's a podcast from Dementia Australia about dealing with life after a diagnosis of dementia. Across this series, you've been hearing from people living with dementia and how they're dealing with some of the changes they're faced with: whether it's adjusting to a new exercise routine, grappling with disturbances to sleep, coping with changes to your close relationships with family and friends. It's something my family's had to deal with too. My own dad has Parkinson's and Lewy body dementia, and you'll hear more about that later in this episode. And I'm hosting this series with my friend Jim.
Jim: G'day ‘Ham’, how are you?
Hamish: I'm very well. Thank you. Good to see you. I know you're really close with your entire family and they've been critical to every stage of your journey, but just tell me a little bit about the clan.
Jim: Well, the clan are amazing, but I'm biased. So I've got my husband, Ty, who is amazing human – we’ve been together for 25 years next year – my eldest daughter Millie, my youngest daughter Daisy, and also my son Harvey, who's in the Gold Coast. So yeah, they're a pretty amazing bunch, and love them to bits.
Hamish: All right, let's meet your daughters, Millie and Daisy.
[Music plays.]
Millie: I'm Millie. I am 33 and I'm the eldest, and I have two little kids: Maggie and Rocky.
Daisy: I'm Daisy. I'm 30. I have two little boys and I'm Jim's youngest daughter: the favourite one.
Hamish: Are you really?
[Laughter.]
Daisy: Yes, I am.
Hamish: Is she really the favourite?
Daisy: Don't tell the other one.
Daisy: I think so.
[Laughter.]
Millie: It changes.
Daisy: Yeah, it depends on the day.
Millie: Yeah, depends on the day.
Hamish: And so have you always had that kind of big sister/little sister dynamic? What's the vibe?
Millie: Yeah, I reckon we're way closer now than we were when we were teenagers, but we're pretty inseparable at the moment: like see each other, talk to each other every single day.
Daisy: Yeah, I would always look up to Millie as like, not only a sister, but a motherly figure as well. Because obviously we lost our mum when we were younger. So that's always been really nice for me.
Hamish: Because you guys were pretty young when your mum died, right?
Daisy: Yep, I was – I’d just turned five.
Millie: Yeah.
Daisy: I don't remember too much of her at all, to be honest.
Millie: Yeah, I remember bits, but not a lot, and – but I remember dad telling us, and that day was vivid. I remember every single detail. I remember our grandparents just took us to a park, and we were just playing, and then we'd get home, and I remember dad was wearing this bright green jumper with a red like letter on it. Yeah, then he sat down and told us, and we just didn't believe him. And I ran around the house trying to find her: thought he was joking, and then pretty quickly realised it wasn't a joke, and yeah, it was pretty full-on.
Hamish: What was your dad like at that time?
Millie: So strong, so strong.
Daisy: Yeah.
Millie: We never saw the hard side of it, because he was just a brave face.
Daisy: He used to take us to school and all of our hair would be perfect, our lunches would be packed, our clothes would be perfect, and he would walk us to school and just have a brave face, and then go home and just close the curtains and cry or be upset.
Millie: Mmm, mmm [in agreement].
Daisy: And you know, reality would sink in, but yeah, we never were aware of how hard it was for him.
Hamish: Can we go back a few steps? Millie, how did you find out that your dad had received this dementia diagnosis?
Millie: So I was in Brisbane at this point, and my family were in Sydney, and I remember hearing bits and pieces about how Dad had these scans, but they were really underplayed: “oh, I'm just going in for this thing.” And I just, yeah. So when he told me, I remember standing outside Maggie's room.
Hamish: This is your daughter?
Millie: Yeah, and I was cleaning or something, and I was on the phone and yeah: “I’ve followed up about these scans”, and then Dad said: “Well, I've been diagnosed with early onset Alzheimer's”. And I just froze and felt like the floor had just been ripped under my feet, and just couldn't believe what he was saying. I didn't know the severity of it and I remember then googling it and just being – I had to communicate it to my husband. And I was just like, “this is unbelievable”. Like, actually unbelievable. I just couldn't believe it.
Hamish: What you were reading, did that match up with what you saw in your dad, I guess?
Millie: No.
Daisy: No.
Millie: No. And then I thought: “What haven't you been telling us Dad?” Because I thought, you know, he must not be telling us certain things about what he's remembering. And then he said, you know, when he went into one of the meetings, he was on his phone and couldn't remember how to put it on silent or something that, you know, everyone just knows how to do. So yeah, it was just wild. I just, yeah, I just couldn't believe it. And also went just really numb. And then went down a bit of a rabbit hole of finding out about it, and we were all educating ourselves together, because we didn't know anyone who's had it. Not a grandparent, not a cousin or an auntie: like no one, no one in our family, and he just got it. And it's just bizarre to us.
Hamish: Do you advise the ‘Doctor Google’ path? Is it helpful? Is it? I mean, I've spent so many hours reading…
Millie: Yeah.
Hamish: …everything I can find. I'm just not entirely sure how useful it is.
Daisy: I think information is key: for me, personally. I feel more comfortable with something the more that I know about it, can learn about it, read about it, can relate to it. Hear people talking about the experiences that I'm going through. You know, to sort of – it's comforting for me.,
Millie: Whereas I found it like the more I read, the worse it got. And I just remember Ty being so incredible with advice and videos and things he had seen, and he'd share them with us, and that was really helpful to me. And then hearing through Dad's professionals as well, and Dad communicating it with us.
Hamish: How involved have you guys been with all of the decision-making that's come along with this period of your dad's life? Because there's a lot of really confronting decisions that can be quite difficult. How much have you been part of that?
Daisy: I'm power of attorney with Ty, and I have to, you know, make executive decisions like that for him. If Dad had to go into, you know, get additional support, or in a care home or something like that, then that's the responsibility that we would have to make together and make those decisions for him. The best for him.
Hamish: Are you daunted by that?
Daisy: Not really, actually. I think it's a big responsibility, but you know, all I want is the best for him, and all I care about is, you know, his happiness, his health, what's most comfortable for him. So I feel happy to be on board making those decisions. I think it's really important to be prepared and have some sort of idea, not make a decision based on, you know, emotion, because once they've declined and, you know, it's just incredibly raw and sad. You don't want to be making a decision based off those feelings, you sort of just have to start preparing what you're wanting to be doing now, whilst you can.
Hamish: Obviously your dad lives for the grandkids.
Millie: Mmm.
Daisy: Yep.
Hamish: How much of that can he still do? And how are you managing that as things evolve?
Daisy: Yeah, he's definitely an amazing granddad and is so present. And, you know, just gives 150 per cent all the time.
Millie: Yeah, amazing granddad. My kids are just obsessed with him and Ty and yes, so much effort. Even Dad will go a week without seeing Maggie, and after three days, he's FaceTiming her, saying, “I miss you so much, Grand” (they call him ‘Grand’), “we'll see you really soon”. And, yeah, it just puts in so much effort, but we're just really mindful yeah, sometimes we have to say, “go and have a rest”, or the four kids all together – like, he loves everyone being all together, but it's also a lot and a bit of a sensory overload. So it's like, we just make sure there's not music on and, yeah, go for a little walk outside, so it just breaks it up a bit. And have that one-on-one with the kids is better for him.
Daisy: He used to, you know, have the kids on the dedicated days. So like, for example, he'd have Maggie on a Tuesday, Archie on a Thursday and things like that, and or Maggie would sleep over and things like that. But I think Millie and I are very conscious of him becoming tired, and it's quite draining for him now, so.
Millie: Which he finds really hard, because he wants to take them to their cottage, you know, for a week and do all those things. And I really hope we can make that happen, but at the same time, like, we might not.
Daisy: Yeah it's hard to accept those things, definitely, you know, like, he'll say: “wait till they're older and we'll all be going on holidays”, or you know, “we're gonna get bunk beds and they'll all come for sleepovers, and we'll watch movies”, and it's so incredible to hear and think in your head, but it's like the other side of that is “is that really what's gonna happen?”, you know, and you hope and you pray, but you just never know. So it's double-edged sword, in a way.
Hamish: Your dad said to me that when your mum died, when Lorna died, he kind of went into a bit of a ‘super-dad’ mode. That was his response to it, and he compared that with now and learning the news, and wanting to give you guys an impression of everything that it was all okay. Do you… can you see that?
Jim: Yeah, as soon as you just said that I'm thinking, “oh, my God, he's done the same thing with our grandkids”.
Millie: I, for sure, agree with that.
Daisy: Like ‘super-granddad’.
Millie: Yep.
Daisy: A hundred and fifty per cent of the time, every day, to protect them, but also for us, because he puts on a brave face for us as well. Definitely.
Millie: Yeah. He definitely puts on a brave face, yeah. Like, we kind of forget what he's going through, in a way, because we don't talk about it that often, and he's doing so well that, I mean, sometimes we even forget. And then we just did a memory walk, and we all got together. And that was really confronting, because we don't do these things where we sit and talk about it. We just, we try to put on a brave face, too for him, and just live normally.
Hamish: I imagine for a lot of the people listening to this, it's kind of going to be a similar experience of, “okay, we want to make the best of this time, yeah, but there's also some really tough bits of this”. So to the extent that you're happy to, can you just share a bit about that?
Millie: Yeah, I think it's, you know, you put one foot in front of the other every day, and you try and live a normal life and be there for him and things like that. But, yeah, you have moments where, like, I'll just, just not stop crying, and just like fall into my husband's arms, and then I literally wipe the tears away, and I'm like: “No, I'm fine, now let's go”. I'll do that for another few months and then I only did it recently with a friend, and my friend’s like “are you okay?”. And I'm like: “yeah, this is just wild, because people ask you how he's going and he's going so well”, but when you think about what the future's going to bring, it's, yeah, it's it's scary.
Hamish: When you have those moments. What is it that you're thinking about?
Millie: My biggest thing is my daughter.
[Child makes a funny noise.]
Jim: What are you doing, Mag?
Maggie: Eating lollipop.
Jim: Eating the lollipop?
Maggie: And pretending I’m a bird.
Jim: You're a little bird.
Millie: And him not like knowing who she is, because they're just so close, and she just lights up his life. All the grandkids do, but I think Maggie's a girl, and she was the first, so she has this really special connection with Dad. So for me, it's that. I think I will be able to find a way to be okay. I will. But for her, it's – that's what's really killing me. Yep.
Daisy: Dad and I are super-close. He's like, my best friend. So it's like, I just can't imagine not having him to talk to or, you know, ask questions, because I literally lean on him for everything, like, what pillow should I buy? [Laughter.] It's a joke. It's ridiculous.
Millie: They do talk. I'm like: “Dad, can you answer my…?” “Sorry I was on the phone to Daisy.” “Can I have a minute?”
Daisy: But, you know, my partner makes fun of me because he's like: “Oh, are we allowed to get – not allowed, but we, should we get – this pasta or, you know, do you have to ask your dad first?” sort of thing. So we're super, super, super-close, and I talk to him about everything. So, yeah, it's just like the thought of not having that just, it's so hard to comprehend. And, yeah, sort of, I lock away those feelings because I don't want to deal with it. It's tough.
Millie: Mmm.
Daisy: It's really hard.
Hamish: I know you’re sort of cautious in what you say, because your dad will be listening to this. G'day Jim!
[Laughter.]
Daisy: Hi Dad!
Hamish: And there's obviously stuff that's difficult to talk about. What do you want him to know that you kind of haven't been able to say?
Daisy: I want him to know that it's okay to talk about it and it's okay to be – I don't want to say, ah, I don't know the word.
Millie: Vulnerable.
Daisy: Vulnerable, yeah, it's okay to be vulnerable and it's okay to use us for support, and not always put on a brave face to, you know, protect us, because we at this point in our lives, like all we want to do is protect him. We just want to make sure that he's happy and comfortable, and anything that we can do to make him feel better, we’ll do.
Hamish: What about you Millie?
Millie: Oh, just that he's the most, like, amazing person and the greatest Dad.
Daisy: He is, yeah.
Millie: And yeah, like Daisy said, like, let us help you. We have kids of our own now, so it's like, we know, we know that we're his babies, but it's like, let us help you. We just adore you. And, yeah, he's just one of the greats.
[ Music plays.]
Jim: Okay, Hamish, you've had the chance to dig into my family. So now it's my turn to turn the tables on you.
Hamish: Great. [Laughs.]
Jim: You're not used to being interviewed, so it's going to be interesting to put you in the chair, I think.
Hamish: Yeah. Do your worst.
[Laughter.]
Jim: Firstly, I just wanted to go back and chat a little bit about your dad and ask you what qualities you think you might have got from him?
Hamish: Probably a fair degree of stubbornness and iron will. Dad's also very independent and has always been very independent, and I think I've probably got that from him: like independent thinking.
Jim: Yeah.
Hamish: I don't think Dad is someone that ever likes being told what to do, or even feeling like he's just going along with the, you know, the pack. So maybe I've got that from him. Dad loves the outdoors and he's always been very active and sporty, and I've got that too. So yeah, maybe, maybe I've got some of the good and some of the bad.
Jim: Let's hope more of the good. But you, since discovering his dementia, have you noticed any of those qualities that you talk about his independence being affected?
Hamish: Yeah. I mean, absolutely. I guess one of the things about Dad's situation is that he's lost all of his independence and I think that's what's been particularly confronting for him, but also challenging in terms of trying to help him deal with it and be cared for in the right way. So Dad was initially diagnosed with Parkinson's disease and then Lewy body dementia, and so he has, I think, always struggled with that diagnosis. You know, he's a pharmacist, so he knows all about the medication. He's able to talk very cognitively and in great detail about that side of it, but then will really lack insight into what his needs are and what his limitations are. So all the way through this process, it's been a real, I guess, point of friction for him with his family about what he is and isn't able to do.
Jim: And frustrating.
Hamish: Oh, he's hugely frustrated. You know, he still wants to live on his own. He still wants to move to Queensland, like you. He wants to live in a flat on his own in Queensland. He's wanted that right the way through this process, even though he can't cook or care for himself. He can't now use a phone or a laptop. He couldn't take money out of a cash machine. And that's been a sort of steady decline, I suppose, but this whole experience has meant that I've had a more kind of intimate relationship with Dad than what I would ever have expected, because you sort of have to get to know parts of your parent, you know, and their life in a way that you would never anticipate and even see them, you know, sobbing on a bed, crying or sort of talking about, you know, wanting their life to be over, and things like that.
Jim: Things you never really expect to hear from the parents, sort of that role reversal?
Hamish: Totally, but just also not even the parent/child part of the relationship. Just, it's not really ‘him’ to kind of be like that. You know, he's always been this force of nature, very determined, very Scottish, you know, that kind of like ‘hard Presbyterian work ethic’ and all that kind of thing; kind of dour guy and, yeah, so to see someone like that in a really deeply vulnerable situation is quite confronting.
Jim: I can imagine. Just take me back a little bit, just to when was he diagnosed, and what were the signs that sort of led to that diagnosis?
Hamish: It was a fairly gradual process, actually. So I come from a place called Jindabyne in the Snowy Mountains of New South Wales. That's where I grew up, and Dad remained there up until a few years ago. Our house was out of town in a little hamlet called East Jindabyne. And my parents have not been together for a long time, so Dad was living there for many years on his own, and it was obvious to me – it had been obvious to me for some time – that he was not really himself, that things were declining a bit. There was no diagnosis. But for someone that had always been so physical and so active and so kind of disciplined, it seemed like that was falling away a bit. His clothes would kind of not fit, or his trousers would be falling down. You know, there'd be sort of more bathroom incidents. He was clearly, I guess, forgetful, or, you know, his long-term memory would be brilliant. But then there would be more obvious recent stuff that was sort of not all fitting together. The big thing that stood out to me was that he was just increasingly unable to kind of maintain the home.
Jim: And prior to that was he always very organised, very on the ball?
Hamish: Yeah, like he was never technological. So, you know…
Jim: But very tidy and…?
Hamish: Yes and very kind of just ‘on point’ with stuff.
Jim: Yeah.
Hamish: But it wasn't like that. I'd go down and the house would sort of look like – I used to describe it as being like the – it looked like the Unabomber lived there.
Jim: Yeah.
Hamish: So I think he was coping or adapting to whatever was going on for him by putting everything that he needed out on benches, rather than away in drawers. So all of the cutlery that he used would be kept on the bench.
Jim: So, visible?
Hamish: Yeah. Or he couldn't use the window blinds properly, so they'd have like Post-it notes clipped to them, showing him where to raise them to.
Jim: Like he had a backup plan for everything to try and make everything simplified?
Hamish: Kind of, yeah. And I actually watched a story on The 7.30 Report about an author in England that I think was living in – living with – dementia, and she was doing something very similar. So I guess I, you know, I had some kind of inkling, but not: there was no diagnosis. Anyway, the GP from Jindabyne rang me and said: “We think you probably need to come down and come to an appointment with him so we can just talk about where things are at”. And Jindabyne is a small community. It's really tight knit: Dad had been the pharmacy there for many, many years, so he knows most people in town. But basically, the substance of this appointment or meeting was ‘you need to go to hospital, but you need to be tested for a whole bunch of things, because, really, the community's been supporting you a lot, but it's kind of becoming too much’. And so it turned out, he was reliant on people for lots of things: more so than we even knew. People were helping him change his bedsheets or helping him bathroom or, you know, it was more than just kind of neighbourly friendly help. And so when he was in hospital, he was diagnosed with Parkinson's. It was subsequent to that that he was then diagnosed with Lewy body dementia, which is not disconnected from Parkinson's. They're often described as being on the same –on a spectrum – and so he's been living with that ever since.
Jim: So who goes with your dad to his appointments now?
Hamish: I go to a lot of them. My big sister sometimes takes him to his skin specialist appointments. Thankfully, we have a GP that visits him in the aged care residential setting that he's in. And you know, gradually he's going out to less and less appointments, because it's become too difficult for him, actually.
Jim: Can it be tricky now negotiating who does what with the siblings?
Hamish: Yeah. I mean, I think any family will have great challenges dealing with a relative that's living with dementia. And I think it's one of the things I've learned through this is just the value of communicating: having open conversations really early on. Whether you have dementia in your life or not, but for adult children of parents to talk to them about what they want, what their wishes are, what the arrangements are going to be and vice versa, for the parents, you know, who are ageing to have those conversations as well. Even though some of the stuff might be confronting or difficult or emotional, I just think it's so much better to have those chats when you can and when there's not the…
Jim: Early on.
Hamish: Yeah, totally.
Jim: And do you tend to agree, all of you on the same thing? How do you come to an agreement?
Hamish: Um. Don't really. Yeah. So, yeah, it's been, it's been really difficult, you know. And you know, obviously want to be respectful of others. And, um, ah, you know.
Jim: It’s tough. All of this is tough on a family, isn't it?
Hamish: It absolutely is. You know, people talk about dementia at rightly so, because of, you know, and focus on the person that is living with that condition. But actually, I think when that happens, the condition impacts everyone in that, you know…
Jim: It does, yeah.
Hamish: …in that little ecosystem. And the way I've approached it all along is just to try and give him dignity: not that he's said this explicitly, but my impression is that he feels like the whole thing's very undignified, and he's an incredibly proud man. Always has been, and – I just – my sense of it is that he feels humiliated by what he's living with and the situation that he's found himself in. And so I always just approach everything with trying to give him as much dignity around it as I can. So, make sure he's always got nice clothes to wear: something that he would like, you know. Just trying to make sure that, you know, the doctors are good, that attention is being paid to all the small details, so that – because it's very easy for someone in this situation just to be kind of lost in the system, I think – you know, people living with dementia, they need love and they need support, but they need advocates as well. They need people that will go in with them to the appointments or follow up after the appointments, or read the detail in the letters from the doctors, or see the bit of medication that's missing, or…
Jim: Yeah.
Hamish: You know, just actually getting your head around the really fine detail of what someone's needs are and being able to advocate on their behalf. I never expected that would be part of this, but I think it is.
[Music plays.]
Hamish: Hold the Moment is a podcast from Dementia Australia. You can find it in all podcast apps. Don't forget, there are more resources available on the Dementia Australia website as well. And help is at hand, via the free National Dementia Helpline, you can call it 24 hours a day, every day of the year on 1800 100 500.
Jim: And we also have a bonus episode of tips for you from the helpline too. You'll find it in your podcast app now. So if your family needs help on navigating life now you have a diagnosis, download it right now.
Hamish: Hold the Moment is produced by Deadset Studios for Dementia Australia. This episode was produced by Madeleine Hawcroft, sound design by Sean Holden. The executive producers are Grace Pashley and Kellie Reardon. The production manager is Ann Chesterman.
[End of recorded material]
A dementia diagnosis can have far-reaching impacts, especially on families. Hear from co-host Hamish Macdonald on how his relationship with his dad has evolved in unexpected ways following his father’s diagnosis. Hamish also speaks with his co-host Jim Rogers’ daughters - Millie and Daisy - about their strong family bond in the face of adversity.
Bonus - Helpline: Tips for families supporting a loved one with dementia
Valuable resources and information for families impacted by dementia.
Transcript
[Beginning of recorded material]
Jim: A dementia diagnosis can be daunting, not just for you, but for your family too. I think constantly about how my diagnosis will impact my children and their children. I'm Jim Rogers and I have younger onset Alzheimer's. Welcome to Hold the Moment. It's a podcast from Dementia Australia, full of stories about life after diagnosis. Dementia Australia has some really great resources on its website for families and carers. They even have a free specialist counselling service for families grappling with younger onset dementia. We also have an entire podcast episode on the impact dementia can have on families. You can download it right now in your podcast app, but this short episode features expert advice from the National Dementia Helpline. They're available 24 hours a day, every day of the year. If you call, you'll speak to an advisor, just like Kristin.
Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us, you'll speak to someone like me. We're a free service and we're open to anyone. People living with dementia, their carers and families – even children under the age of 18 can give us a call. Family relationships can be complex. When there are multiple people involved in caring for a loved one who's living with dementia, there can be different opinions about what the right thing to do is. It can be helpful to reach out to a place like Dementia Australia to receive more information and understanding, to help create a path forward that everyone can agree to, even if it isn't their first choice. It can be difficult when you're caring for kids and you're caring for a loved one who has a diagnosis of dementia. What are you meant to tell the kids when they ask all the questions that curious kids have? You can always give us a call on the helpline. We can talk you through some ideas. And there's a fabulous website that Dementia Australia offers, called Dementia in my family, that has information for kids of all ages, and has a video that I love where kids talk about what it's like to have a loved one in their family living with dementia. It can be hard to know how to best support your loved one who's living with dementia. You might wonder if you should be going to all of their appointments with them. Really, that's something that's individual for everyone.
A lot of people find it helpful to have someone come along so that they can just listen to their health care professional and their helper-person, whoever that is, can write down notes, ask questions that they might have had ahead of time, maybe even help with things like getting you to and from the appointment. When someone in your family is diagnosed with dementia and they don't live close by in the way that you traditionally think of caring for someone, there are some ways that you can still help and care from a distance. You could contact the National Dementia Helpline for some ideas, but a couple of tips are things like helping out with booking appointments, taking care of scheduling things. You could order groceries to be delivered. You could order arrangements of flowers, or anything to brighten someone's day. You might wonder what kind of supports would be available for your loved one who speaks a language other than English. You can contact the National Dementia Helpline, through the translation and interpreting service, where you're able to access our supports in the language that you are comfortable with. When you're diagnosed with younger onset dementia – which means you're under 65 years of age – you might have a lot more going on in your life, and it can be helpful to seek support, not just for you, but for your family members as well. Dementia Australia offers a family engagement program, which is a free support service for you and your family. Everyone responds differently, which is why it can be helpful to find supports. It might be in your cultural community, in your spiritual community, your friends, family – or you can always call Dementia Australia. Whatever your age, Dementia Australia is here to support families.
Jim: The helpline is not just for people living with dementia: it's for their families and carers too. 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. Don't forget, there's lots of episodes of Hold the Moment for you to explore right now. The series is designed to help you with lots of issues you might be facing, whether it's getting your affairs in order after a dementia diagnosis, adjusting to new exercise or sleep routines or advice on getting around town and travelling. Make sure you or a family member helps you hit ‘follow’ on Hold the Moment, because we've got a new series coming soon. It's focused on carers and family members. If you hit ‘follow’ in your podcast app, you'll be alerted when our next series comes out. This episode was produced by Deadset Studios for Dementia Australia.
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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 HelplineCall 1800 100 500 for free and confidential 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.