Still Me
Understanding Identity After a 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.
Courtney: Once upon a time, there was a little girl named Billie. She had the best nan in the whole wide world.
Jim: What you're hearing right now is an excerpt from a children's book. It's called Through Billie’s Eyes.
Courtney: They loved going on adventures together, exploring the park, playing hide and seek, and swimming at the beach. But one day, Billie noticed that her Nan had started to act a little strangely. She sometimes forgot where she put her glasses, or what day it was. Sometimes, Billie's nan told the same story over and over again, and Billie didn't understand why. Are you okay, Nan, Billie asked one day, feeling a little confused. Nan smiled gently and replied, oh, my sweet Billie. Sometimes my brain gets a little mixed up. It's called dementia, and it makes it hard for me to remember things.
Hamish: Welcome to Hold the Moment. We're back for our third season of the podcast. Hello, Jim.
Jim: Hey, Ham. Where's the time gone?
Hamish: I know it's flying by when you’re having fun, isn't it? So, we started working on this not all that long after your initial diagnosis.
Jim: Yeah
Hamish: How are things going? How are things tracking? Because we've sort of been following your journey as well.
Jim: Yeah. I think when I got my diagnosis, as you know from our chats, it was devastating to get that diagnosis, and you go down a black hole. And it's so scary, especially when you see your scans and somebody points out what's going on. It's terrifying. And then you do your deep dive, and then you expect to go on a set out journey. So, I think the anxiety of the whole thing is as much to deal with, as the actual diagnosis, you know, the actual illness, I should say. So, I found myself pretty much plateaued and not terribly different from when I was diagnosed. I have noticed a few things that I've talked about on this podcast. Like my sleep's been awful, even last night prior to this was a terrible night's sleep. I don't know if that's the anxiety of knowing I need a good night's sleep to come and see you, but I didn't, and I had an awful sleep last night. But that's just one of the things, and it's, my brain is going 100 miles an hour in dreams, and then I almost wake up panicked and feeling exhausted. And this can be three o'clock in the morning, like last night. I took a sleeping tablet at half three because I just needed to go to sleep before coming into here. So, lots of things like that. I also have had recently a couple of things. I fell down some stairs, and then I fell down some stairs in the shop, and then Ty was worrying, is my spatial awareness changing a little. So, things like that. But on the whole, I am trying to, you know, stay well.
Hamish: You're looking fit and healthy. You're still exercising a lot?
Jim: Massively. Doing my fitness. If I ate any healthier, I would, you could write a cookbook on me.
Hamish: You’d be a green bean.
Jim: Yeah, it's really, really super healthy what I eat. So, yeah, I'm doing everything I possibly can.
Hamish: And I'm interested though about the great things that are happening in your life. Because since we started doing this, you've ended up as the focus of an episode of Australian Story. I think maybe there's a book in the works. There's really interesting, exciting things going on for you, also travelling around the world, spending time with your family. And in a sense, we're going to explore in this season a few of these dimensions about how you retain who you are once you've received a diagnosis of dementia. So, before we start exploring all of those stories, tell me about the kind of surprising, interesting, amazing stuff.
Jim: There's so much amazing stuff going on. I mean, honestly, I can't keep up with myself. I could do with chopping myself into several little pieces, because I feel as though I don't know which one to do first. But all of these things, what came from a devastating situation, so many good things have come. So, I'm very lucky to have had great experiences, met interesting people, and to be doing so many diverse things that I never expected. Because when I gave up my work, which I loved, I sort of thought that was it, and I was gonna wait around to just be gaga and finish. But I've been so busy doing so many things. So yeah, I'm trying to just stay who I am and be me. And I'm adjusting at different times where I find things a bit of an overload, or I find that something's too much for me. I recognise those flags now, and I know how to handle those situations and take myself out of them and just quieten down. So, I think it's learning to adjust to the progression and just take it easy.
Hamish: So, Season One was all about meeting people living with dementia, different forms of it, how they're responding to it, dealing with it. Season Two, we focused on carers. And Season Three, this season, in a way, we're doing all of the curly, juicy, complicated.
Jim: Yeah, the nitty gritty.
Hamish: Which I guess you've talked to me a bit about offline. So, this is kind of like the unsealed season, to some degree, isn't it? We're going to get into,
Jim: Behind the door,
Hamish: Sex and intimacy. We're going to talk about moving into residential care,
Jim: Which is huge,
Hamish: something that you've kind of wanted to avoid even talking about, even things like palliative care, end of life, a really big, messy mix, some of the stuff that comes at you.
Jim: Very diverse. Yeah. I'm very interested in all of the above and meeting those people who've walked the walk. And so, it's been a fascinating journey to listen to these people doing their, you know, who have experienced this ahead of me.
Hamish: So, for all the little things that make you curious about living with dementia, that you wonder about that you don't want to ask. You've had a diagnosis and you're nervous to talk about, you know someone that's living with it, and you don't want to be sort of insensitive, all of that we're cramming into this season.
Jim: Yeah, so Ham, you're absolutely right. I am so looking forward to us getting stuck into all of this and meeting these people and seeing how they've got on. So, we need front row seats.
Hamish: Yeah, and if you thought some of the people we've met so far were big characters, just,
Jim: wait you meet this lot!
Gwenda: I think the main thing is you accept people where they're at, at the time. To assume that somebody who's living with a dementia diagnosis doesn't have dementia or is not basically meeting the norms, it’s about you not getting to know them. It's your problem, not theirs.
Hamish: This is Gwenda Darling. During this conversation, you're going to hear her referring to atypical dementia. She was actually diagnosed with something called behavioural variant, frontotemporal dementia back in 2012.
Jim: Gwenda is a passionate advocate, and she's a member of the Aged Care Council of Elders.
Hamish: She's also passionate about herself. She's got a great sense of humour, but she's always seeking to better understand herself, and recently, she's also been trying to understand why her dementia might be manifesting in particular ways. And you know, we are going to get into the slightly wacky stuff.
Jim: Tell us, Gwenda, how old were you when you first received your diagnosis, and how old are you now?
Gwenda: I was only 59 and I worked out it was January 2012. So, it will be 14 years in January (2026), which is only six weeks away since I was diagnosed, and I was given five years if I took medication, three without.
Hamish: So, when you were first diagnosed, they said, five years. What was the five years?
Gwenda: Five years with medication. If I took medication, the medication he wanted to give me, they would have given me five years. But I also,
Hamish: Five years to live?
Gwenda: And I also knew, and he said three without but I only knew about Alzheimer's at the time, so I accepted his diagnosis, and if I was going to go I was going to go quickly, and I went home, and I went to bed to literally die, stopped eating, stopped drinking, wouldn't shower, wouldn't you know. And then as things progressed, and it was eventually, somebody told me about dementia. Australia. Community engagement officer got me through some of the darkest days of my life. And I have to say, last year 2024 was the best year of my life, really. And so I have had some of the best. Years of my life since my diagnosis.
Hamish: So was there a particular moment or something that happened that made you reassess or recalculate what it meant to be living with dementia?
Gwenda: Yeah, Dementia Australia asked me to go on the ABC show. You can't ask that. I did it with Kevin Morris, somebody from Wodonga, and Kevin and I sat there, and it was like such light bulb moments from the questions I asked. And it was so good sitting with Kevin, who basically has the opposite of everything I do. My sense of smell is off the scale. Kevin's lost his and it was just so enlightening. And I thought, you know, there's more to this than I've been thinking about.
Hamish: So if you can think about what's changed for you, I do want to talk about what keeps you reminded that you're you. But what have you noticed that has changed that you don't love so much?
Gwenda: Oh, I've stopped caring. I don't give a shit. I can really even make it sound like I care, but quite honestly, I just don't care about anything. And then I've only recently realised in the last few months that somebody asked me, what brings you joy. And I thought about and I said, a grandson, particular grandson. And then somebody else said to me, do you ever laugh out loud? And I realised I don't. A last time I can recollect laughing out loud was about 18 months ago with a particular person, but it's only that person I laugh with, and I don't laugh out loud. And so therefore the emotions, not only are there no emotions of sadness, there's no emotions of real happiness and fun and laughter. I have fun my life's fun all the time. I live my life to the fullest. But yeah, I realise that that other side of the spectrum, while not feeling any empathy, not caring, not feeling real sadness, I'm not feeling real joy either.
Hamish: I remember the first time I sat down and talked with Jim to at the very beginning of this you were really still quite distressed about losing your driver's licence. Yeah, you know, this was a big thing for you, not really having the grandkids on your own, being able to go and pick them up. So are there? Are there things like that for you, which you've lost or don't have the capacity to do that you sort of pine for or feel something about.
Gwenda: The biggest loss of my life was losing my driver's licence, and we don't talk about it for the loss and grief process and but it was definitely the biggest loss. But the second biggest loss for me was I went to get my first tattoo last Easter, sad day, wow. And I've got three now, and I couldn't sign my name, and I went into shock about the fact that I couldn't sign my name. And I rang a friend who's a neuropsychologist, and said to her, I can't sign my name. And she said, repetition, repetition, repetition. And it reminded me, we never underestimate the neuroplasticity of the brain. Gotta keep doing it. We've got to keep doing it. And she said, learn to play the piano or something. I said, Not going to happen. But we laminated my signature, got it off my pension card, laminated the signature, traced and traced and traced, and now I'm pretty well back to what was my signature. I can do it sometimes, but one day I wanted it perfect, and it took me eight goes, which means but I can still do it.
Hamish: Have you had anything happen like that? Is there something that you've lost that you could do, that you've sort of surprised you? Yeah.
Jim: I mean, I was finding that when I read quite Ty introduced no screen time after nine o'clock, like, because of going to sleep and all the research he'd done and then. So now we're avid book readers, and I have a pile of books next to the bed that I try and plough my way through. But I'd sort of lost interest, because every time I went back to the book, I'd got to go back and back and back to try and find what I'd been reading about. And it was but the more I've persevered, the more I keep doing and doing and doing it, the more I've sort of got back into it really, of late. So I had started to just completely withdraw and think I can't bother with the reading because it's just tiring, but I'm sort of getting back into it now. So I just know I've got to go and do a recap, and then I'm back in. Hey, Gwenda, I'm just wondering, did anybody in your family have dementia?
Gwenda: Well, I wouldn't know because I'm older than both my parents were when they passed. My dad was 64 my mum was 72 my dad was an Aboriginal man who. I've been fortunate enough to get his child welfare records. He was in Tasmania. Was born in 19 106 he's Palo al man, and he went off to World War Two, came home, and like a lot of soldiers, he ended up with what shell shock it was called PTSD. He was an Aboriginal man who couldn't own anything. He couldn't own property. Because even though he was good enough to go to war, prior to the 67 referendum, when Australia voted yes, Aboriginal people couldn't own anything, so it was on a piece of land. So it was a very different world, unbelievable. And I think the main thing is that, with Aboriginal people, dementia is often mistaken as mental health or groxy, and we've got to start asking the question, could it be something else? Could it be dementia? We've got to stop putting the blame on people, which is where I go with my modifiable factors. Stop trying to blame me for the fact I've got dementia. Let's look a bit further as to what it might be and is it dementia. And I feel really strongly
Hamish: About that. I guess that's a common feature, isn't it? Of when there's someone is trying to diagnose something, you can end up feeling very cornered with the questions, right? Yeah, and
Gwenda: I've been very involved in Aboriginal communities and Aboriginal research, and we've now still working on modifying the kicker, the Kimball indigenous cognitive assessment, and because the diagnosis for different cultures can be very different, and I had the opportunity to meet with some Taiwanese people, and seeing the way they do their diagnosis is very different. And I think there's no one size fits all. You see one person living with dementia, you see one person, you see one community that has people living in it with dementia. You see one community, and I think we've got to really broaden our thinking as a multicultural society. We need to broaden our thinking. And it's all very well to say, you know, Aboriginal people have a high percentage of people living with dementia. But what do we know as statistics, really? How do we know what Aboriginal people are living with? How do we know? And how can we know we can only know if we keep our minds open and really get to know who the person is. If you take one thing away, it's about finding who the people are, and particularly if you're a carer, really know who your loved one was, because often we hid it from our children.
Hamish: Gwenda, I guess everything about you is not what the common perception of someone living with dementia is, and I suppose there'll be people listening to this, either themselves with a diagnosis or a family member that's been diagnosed, that really might have very different expectations of a dementia journey or pathway, or whatever you want to call it, to what you're describing, what would you say to those People?
Gwenda: It's really hard, but then I've never fitted the normal box, the normal cycle on the washing machine. I've never been normal. But on this adventure, people judge all the way through. It's part of the stigma of society, I think. And I don't know what a normal person living with dementia is like but sometimes
Hamish: I'm supposed to have gone Gaga staring out the window.
Gwenda: But I think if I could sort of do one thing, it's say, Try and think what it's really like for me. Try and think what it's really like when I can't find something and I'm pulling everything out of the wardrobe in the middle of the night, or I'm getting up and down seven or eight times going to the kitchen. One of my sons said to me, if there's one thing when you talk to your dementia counsellor, can you ask them why you get up and down so many times after you've gone to bed and I go to the kitchen. And one day I got up the next morning and somebody had smeared carrot cake all on the kitchen bench. And my son said, don't you remember getting up you were doing it last night, wiping the bench with a carrot cake. The bags of groceries mysteriously appear on the kitchen bench, and I haven't put them there. And my vet said to me, see if any neighbours have got a camera. And I said, Oh, I've got a camera, and I had a look. Yes, it was me who definitely bought them in but it's in the black hole, I don't know. But if I've learned one thing, I've learned, the more you try to dig into that black hole, the further it goes. I don't look like I've got dementia, but I'm not gonna let it beat me either. I've just made the momentous to say. Decision to move into a residential aged care community, and I was one person who was never going to residential care. And if I could say to anybody, don't exclude it, shop around, find where it's the best place for you. Which I did. I've shopped around, and I've only moved a fortnight ago. Different lifestyle, different thing altogether, that I've done it on my terms. Don't wait till your family decide for you. I was determined. I wasn't going to have my boys tell me where I was going, and you've got to be realistic about it. We're probably all going to end up in residential care, whether we like it or not. What What
Jim: triggered that for you? What made you get to that point where you said, I'm going to take control and get myself sorted into residential care.
Gwenda: I fell. I didn't have a fall like old people do. I fell and I fractured three ribs and tore the flailing. I was in absolute agony at home, and I realised my family didn't have capacity to care for me. They may have had the desire they may have thought they could, but I realised they didn't, and that was the trigger that was four years ago in November. And I started looking, I started looking at places in a different light. Would I live here? And once I found, when that became the benchmark that I looked for others, they had to be better than that, one or equal to and I looked at from Tasmania to Darwin, so you were prepared to go all I would have gone anywhere in Australia and take some courage. I had to say, what sort of community do I want? Because I need to train the staff for what I want. Yeah, I need them to know who I am. Don't expect me to get out of bed
Jim: in the morning. Off the shelf, customer, really, you're quite unique. Am I?
Hamish: I reckon they might have guessed that with the hair. But anyway, so listen, the language that is used when it comes to people living with dementia is pretty important to you, as I understand it. So if someone sees you standing outside, on the grass, no shoes on, looking around, now, they might describe you as, oh, she's got dementia. She's gone wandering. What would you say to them? How would you describe that?
Gwenda: I guess it'll depend if I had clothes on. I've got no shoes on, but it'll depend if I've got the clothes. Does it sometimes happen without clothes. It sometimes happens, I'll suppose lady, she opened the door one day, and there I was, and she said, Do you want to go and put a dressing gown on? I said, why? And I just took the parcel from her. It was an issue for them that I was waving my boobs around. You know, they're like tennis balls in a sock hanging but it wasn't an issue for me, and I think the same if I'm standing there, because in my mind, whatever I'm doing, I'm doing with purpose. So they may think I'm wandering. God, I hate the word wandering. We're either exit seeking, as in trying to get out. We're walking, or in our mind, we're actually going somewhere or doing something or preparing for something. And if you saw me standing on the grass with nothing, no shoes on my feet, would you think to ask me, you know what's happening for you? What are you doing? Because I may be communing with Mother Earth. I have one particular friend always say to her, get your shoes off and stand barefoot in the dirt, and that's what I'm doing. I'm doing something very real for me, but that's your judgments. And with dementia, everything comes with a judgement. Everybody judges you.
Hamish: So explain that then for the child, the spouse, the relative that has come to see you and you're standing in the middle of the media strip with no shoes on, maybe with clothes or not, they might be a bit worried. Is Gwenda safe? How do you how do you want us to interact with that? Because I suppose that, for me is someone who's had a parent that's done some stuff that I might well that's that's unusual. What do you want us to do? I'd like you
Gwenda: first of all to think about, is it your fear, or is it something your loved one would have done anyway? That's the first thing. Then, if you see me standing in the median strip, and how are you what are you up to? What? What are we doing? We take the time to just, would you like to come somewhere with me? Yes, that's the word. Find out. Find out who I am and what you're am I doing? Where am I? Because where am I in my head?
Jim: So the offence comes really if somebody takes control and tells you you shouldn't be doing this, or you shouldn't be here. You really want somebody to invest the time to understand why you think it's okay that you're doing what you're doing.
Gwenda: Yeah, that's right, Jim, you have me for five minutes. Do you think anybody would tell me what I shouldn't be doing? Would certainly push me to do something different. I can. Tell you,
Hamish: I'm just picturing the staff in this residential aged care facility, and you training them at the moment when
Jim: they're like the one with the pink hair, it's got no clothes, sounds like you're on a Sunday morning.
Gwenda: And it was actually interesting, because one facility, I asked straight out, can I walk around with no clothes on? They said you can do what you like, really. And other residents in that particular facility are very accepting, and it's about who am I as a person, and different things surprise you like they're not being able to sign my name. That snuck up on me. I went to the doctor and said, Why can't I sign my name? And he said, Yes, cerebellum. I said, No, you told me that was a false nobody prepares you for this adventure. Nobody says you can expect this. You can expect this only that you can expect to die. That's about the only thing you know. But nobody prepares you I'm going to go where nobody else fears to go. Continents I had in my advanced care directive, if I was doubling Colin continent, I had no quality of life. Now I've been to the urogynecologist. She wanted to do Botox, so I said, No way. The brace is just doesn't get there in time from the bladder to the brain, and all of a sudden, then it started coming out a bum, and you're sitting on the chair, and you think, I've got to go and do a poo, and before you know it, it's already there, and on the lounge room floor, you just don't get that message in time. But you look at me, who would ever think that I'd be doubly incontinent if I was doubly incontinent I had no quality of life, but I still do, because there's ways we can manage things. Yeah, I'm never going to learn to get the message from my bladder to my brain, those neural pathways have gone. I can't save it. It's gone. So how can I manage it? Do you go on the clock? You find your own ways
Hamish: to manage it? Key, really, have you found a way to manage it? I think I manage
Gwenda: it fairly well. I wear black, frilly continent sneakers. I don't have to wear those white, boring granny ones, but it's okay because they're comfortable. I can sit on a plane and it can come and I don't feel wet. No caffeine. You can go eight hours at night with no caffeine. I mean, you're still up pulling everything out of the wardrobe or wiping the kitchen bench with carrot cake or doing other things, but you don't have to go to the toilet because you've got no caffeine. And that's about managing it.
Hamish: From my point of view, the value to doing this podcast and having these conversations is, I think you're shedding light on this in a way that people have never really understood dementia to be. You know, there is this belief that once you get a dementia diagnosis, that's pretty much it.
Gwenda: That's what I believed. That's what I believed. I went home to die. Literally went home to die. I went for a whole season. Never saw the roses, never planted my sweet peas, actually, that I'd planted every St Patrick's Day since I was a little girl with my dad. Never planted them that year, because I was going to be dead if I was going to die within three years. Because I wasn't taking medication. I was just going to do it, and I was going to do it quick, and I realised I saw, like a little light bulb turned on and said, Well, look, you can either go with this and let it beat you, or you can take control of it. And yes, it has beat me in some ways. And even this realisation that really, I don't have a lot of joy. I can't laugh out loud. I would love to go and have a really
Jim: big laugh. Don't you gonna make me come over and tickle you in a minute to get that laugh out? I'd do anything for that.
Gwenda: But seriously, I really think that we've got to say, okay, there are some changes. What is it? What's happening for me? Get that benchmark indicator and then go from there and see what you can do, and don't talk modifiable factors to me, because I've never drunk, I've never smoked, I've never had an illegal drug, never had a cup of coffee. Five kids always doing the strength based exercise. And I got a diagnosis, and I've thought about why did I I don't know, but by Crocky, if I've got it, I'm going to make it work. I'm going to use it to make life better for somebody else.
Jim: And I think you've done that in bag loads, and so you've been amazing for us. Absolutely inspirational. And it's a pleasure to meet you.
Gwenda: Thank you. Thanks, Hamish,
Hamish: that's Gwenda, an advocate living with dementia and a member of the Aged Care Council of Elders. She's a proud Palawan woman and a descendant from the Tasmanian tebrokuna tribe.
Jim: Our thanks also goes to Courtney Deaton, the author and narrator of Through Billie’s Eyes. You
Courtney: Billie didn't know what dementia was, but she knew she wanted to help her nan feel better. One day, Billie found an old photo album in the bookcase. It was filled with pictures of Nan as a young girl in the Photos. Nan was smiling and laughing with her family, Billie showed Nan the pictures, and together, they went on a trip down memory lane, talking about all the happy times from that day on. Billie and Nan continued to look at the photo album together, creating new memories and cherishing the old ones through the good days and the forgetful days Billie and her nan showed that even when things were hard, love could make everything better. And as they continued on their journey together, hand in hand, Billie knew that no matter what her Nan would always be, her nan, and that was all that mattered. How
Jim: Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios.
Hamish: You can find more episodes and resources on Dementia Australia's website, dementia.org.au and make sure you're following Hold the Moment
Jim: so you don't miss an episode. This show is hosted by me, Jim Rogers
Hamish: and by me Hamish MacDonald. The executive producers are Kellie Riordan and Sarah Dabro. The producer is Liam Riordon. Production Manager is Ann Chesterman. Sound Design by Slade Gibson.
Jim: And a special thanks to the whole team at Dementia Australia. And to everyone who shared their stories on this podcast, you.
[END OF RECORDED MATERIAL]
About the episode
What does it mean to still be yourself when dementia is changing how you express yourself, even how your senses work? Gwenda has been living with behavioural variant frontotemporal dementia since 2012, and she says this is one of the best years of her life.
A fierce advocate who refuses to be defined by her diagnosis, Gwenda joins Jim Rogers (who received the same diagnosis at the same age) and Hamish Macdonald for a frank conversation about identity, adaptation, and joy. She insists there is no single way to "do" dementia, and she proves it.
Resources and support
Within the Dementia Australia Library the following topic guides are relevant to this episode and may be useful:
National Dementia Helpline
National Dementia Helpline 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.Elder Care Support
An Australian Government program delivered through Aboriginal Community Controlled organisations to help older First Nations people, their families and carers access aged care services and plan for ongoing support.Dementia information and education sessions
Online and in-person sessions from Dementia Australia that build understanding of dementia and provide practical strategies for support and care.
Watch the interview
In this video we go one on one with our podcast guest.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Gwenda: I think the main thing is, you accept people where they're at, at the time. To assume that somebody who's living with dementia diagnosis doesn't have dementia or is not basically meeting the 'norms' is about you not getting to know them. That's your problem, not theirs.
Hamish: G'day, Gwenda.
Gwenda: G'day, Hamish.
Hamish: How are you?
Gwenda: All the better for seeing you.
Hamish: Who have you got here with you?
Gwenda: That's Miss Redley, and Miss Redley's my assistance dog.
Hamish: Yeah, okay.
Gwenda: She accompanies me everywhere.
Hamish: And she's a...
Gwenda: Spoodle Golden Cocker Spaniel, Red Poodle.
Hamish: With a sparkly pink... Uh.
Gwenda: Collar.
Hamish: Collar, matches your hair. Bright pink.
Gwenda: Well, I'm not sparkly.
Jim: So, let's kick off and tell us Gwenda, how old were you when you first received your diagnosis and how old are you now?
Gwenda: I was only 59, and I worked out it was January, 2012. So, it would be 14 years in January, which is only six weeks away since I was diagnosed and I was given five years if I took medication, three without.
Hamish: So, when you were first diagnosed, they said five years, what was the five years?
Gwenda: Five years with medication. If I took medication, the medication he wanted to give me, they would've given me five years, but I also...
Hamish: Five years to live?
Gwenda: Five years to live and I also...
Jim: That's hard.
Gwenda: And I also knew, and he said three without, but I only knew about Alzheimer's at the time, so I accepted his diagnosis and if I was going to go, I was going to go quickly and I went home and I went to bed, to literally die. Stopped eating, stopped drinking, wouldn't shower, wouldn't, you know. And then as things progressed and it was eventually somebody told me about Dementia Australia. The community engagement officer got me through some of the darkest days of my life and I have to say, last year, 2024, was the best year of my life.
Hamish: Really?
Gwenda: And so, I have had some of the best years of my life since my diagnosis.
Hamish: So, was there a particular moment or something that happened that made you reassess or recalculate what it meant to be living with dementia?
Gwenda: Yeah, Dementia Australia asked me to go on the ABC show, ‘You Can't Ask That.’ I did it with Kevin Morris, somebody from Wodonga and Kevin and I sat there, and it was like such 'light-bulb' moments from the questions they asked and it was so good sitting with Kevin who basically has the opposite of everything I do. My sense of smell is off the scale. Kevins lost his, and it was just so enlightening and I thought, you know, there's more to this than I've been thinking about.
Hamish: So, if you can think about what's changed for you, I do want to talk about what keeps you reminded that you're you. But what have you noticed that has changed that you don't love so much?
Gwenda: Oh, stopped caring, I don't give a shit. But quite honestly, I just don't care about anything and then I've only recently realised in the last few months, that somebody asked me, "What brings you joy?" And I thought about it, and I said "A grandson, a particular grandson". And then somebody else said to me, "Do you ever laugh out loud?" And I realised I don't. A last time I can recollect laughing out loud was about 18 months ago with a particular person but it's only that person I laugh with and I don't laugh out loud. And so, therefore, the emotions, not only are there no emotions of sadness, there's no emotions of real happiness and fun and laughter. I have fun, my life's fun all the time. I live my life to the fullest but, yeah, I've realised that other side of the spectrum, while not feeling any empathy, not caring, not feeling real sadness, I'm not feeling real joy either.
Hamish: I remember the first time I sat down and talked with Jim at the very beginning of this, you were really still quite distressed about losing your driver's licence.
Jim: Yeah.
Hamish: You know, this was a big thing for you, not really having the grandkids on your own, being able to go and pick them up. So, are there, are there things like that for you which you've lost or don't have the capacity to do that you sort of pine for or feel something about?
Gwenda: The biggest loss of my life was losing my driver's licence, and we don't talk about it for the loss and grief process and, but it was definitely the biggest loss. But the second biggest loss for me was, I went to get my first tattoo last Easter Saturday.
Jim: Wow! You got a tattoo.
Gwenda: And I've got three now.
Jim: Wow.
Gwenda: And I couldn't sign my name and I went into shock about the fact that I couldn't sign my name and I rang a friend, who's a neuropsychologist, and said to her, "I can't sign my name" and she said, "repetition, repetition, repetition" and it reminded me that we never underestimate the neuroplasticity of the brain.
Hamish: Got to keep doing it.
Gwenda: You've got to keep doing it, we've got to keep doing it, and she said, “Learn to play the piano or something”, I said, "Not going to happen." But we laminated my signature, got it off my pension card, laminated the signature, traced and traced and traced and now I'm pretty well back to what was my signature. I can do it sometimes, but one day I wanted it perfect and it took me eight goes, which means, but I can still do it.
Hamish: Have you had anything happen like that? Is there something that you've lost that you could do that you've sort of surprised you?
Jim: Yeah, I mean I was finding that when I, I read quite... Ty introduced 'no screen time' after nine o'clock, like, because of going to sleep and all the research he'd done. And then, so now we're avid book readers and I have a pile of books next to the bed that I try and plough my way through, but I'd sort of lost interest because every time I went back to the book, I'd got to go back and back and back to try and find what I'd been reading about. And it was, but the more I've persevered, the more I keep doing and doing and doing it, the more I've sort of got back into it really, of late. So, I had started to just completely withdraw and think I can't bother with the reading because it's just tiring but I'm sort of getting back into it now. So, I just know I've got to go and do a recap and then I'm back in.
Jim: Hey Gwenda, I'm just wondering, did anybody in your family have dementia?
Gwenda: Well, I wouldn't know because I'm older than both my parents were when they passed. My dad was 64, my mum was 72. My dad was an Aboriginal man who I've been fortunate enough to get his child welfare records. He was in Tasmania, was born in 1906, he's a Palawa man and he went off to World War II. Came home and like a lot of soldiers, he ended up with what 'shell shock', it was called PTSD. He was an Aboriginal man who couldn't own anything. He couldn't own property because even though he was good enough to go to war, prior to the '67 referendum, when Australia voted 'Yes', Aboriginal people couldn't own anything, so it was, own a piece of land. So, it was a very different world.
Jim: It's unbelievable.
Gwenda: And I think the main thing is that with Aboriginal people, dementia is often mistaken as mental health or grog sick. And we've got to start asking the question, "Could it be something else? Could it be dementia?" We've got to stop putting the blame on people, which is where I go with my modifiable factors. Stop trying to blame me for the fact I've got dementia. Let's look a bit further as to what it might be and is it dementia? And I feel really strongly about that.
Hamish: I guess that's a common feature, isn't it, of when, when there's a, someone is trying to diagnose something new, you can end up feeling very cornered with the questions, right?
Gwenda: Yeah, and I've been very involved in Aboriginal communities and Aboriginal research and we're now still working on modifying the KICA, the Kimberly Indigenous Cognitive Assessment. And because the diagnosis for different cultures can be very different, and I had the opportunity to meet with some Taiwanese people and seeing the way they do their diagnosis is very different and I think there's no-one size fits all. You see one person living with dementia, you see one person. You see one community that has people living in it with dementia, you see one community. And I think we've got to really broaden our thinking as a multicultural society. We need to broaden our thinking and it's all very well to say, you know, Aboriginal people have a high percentage of people living with dementia but what do we know of statistics really? How do we know what Aboriginal people are living with? How do we know and how can we know? We can only know if we keep our minds open and really get to know who the person is. If you take one thing away, it's about finding who the people are and particularly if you're a carer, really know who your loved one was because often we hid it from our children.
Hamish: Gwenda, I guess everything about you is not what the common perception of someone living with dementia is. And, I suppose there'll be people listening to this, either themselves with a diagnosis or a family member that's been diagnosed that really might have very different expectations of a dementia journey or pathway or whatever you want to call it to, to what you're describing. What would you say to those people?
Gwenda: It's really hard, but then I've never fitted the ‘normal box’, a ‘normal cycle’ on the washing machine. I've never been ‘normal’. But, on this adventure, people judge all the way through, it's part of the stigma of society I think and I don't know what a normal person living with dementia is like, but sometimes I wish...
Hamish: Well, you're supposed to have gone gaga staring out the window.
Gwenda: I have, haven't I?
Jim: That's right.
Gwenda: But, I think, if I could sort of do one thing, it's, say, “Try and think what it's really like for me. Try and think what it's really like when I can't find something and I'm pulling everything out of the wardrobe in the middle of the night or I'm getting up and down seven or eight times going to the kitchen.” One of my sons said to me, "If there's one thing when you talk to your dementia counsellor, can you ask them why you get up and down so many times after you've gone to bed?" And I go to the kitchen and one day I got up the next morning and somebody had smeared carrot cake all on the kitchen bench and my son said, "Don't you remember getting up? You were doing it last night, wiping the bench with a carrot cake". The bags of groceries mysteriously appear on the kitchen bench, and I haven't put them there and my Vet said to me, "See if any of your neighbours have got a camera" and I said, "Oh I've got a camera" and I had a look...
Jim: And it was you.
Gwenda: And yes, it was me who definitely bought them in. But I, it's in the black hole, I don't know. But if I've learned, one thing I've learned, the more you try to dig into that black hole, the further it goes. I don't look like I've got dementia but I'm not going to let it beat me either. But I've just made the momentous decision to move into a residential aged care community and I was one person who was never going to residential care and if I could say to anybody, “don't exclude it”. Shop around, find where's the best place for you, which I did. I've shopped around and I've only moved a fortnight ago. Different lifestyles, different thing altogether but I've done it on my terms. Don't wait until your family decides for you. I was determined I wasn't going to have my boys tell me where I was going and you've got to be realistic about it. We’re probably all going to end up in residential care whether we like it or not.
Jim: What, what triggered that for you? What made you get to that point where you said, “I'm going to take control and get myself sorted into residential care?”
Gwenda: I fell. I didn't have a fall like old people do. I fell and I fractured three ribs and tore the flailing. I was in absolute agony at home and I realised my family didn't have capacity to care for me. They may have had the desire, they may have thought they could, but I realised they didn't and that was the trigger. That was four years ago in November, four years ago and I started looking. I started looking at places in a different light. “Would I live here?” And once I found when that became the benchmark, that I looked for others, they had to be better than that one or equal to and I looked at from Tasmania to Darwin.
Jim: So, you were prepared to go all over?
Gwenda: I would've gone anywhere in Australia, and...
Jim: That takes some courage.
Gwenda: But I had to say, "What sort of community do I want?" Because I need to train the staff for what I want.
Jim: Yeah.
Gwenda: I need them to know who I am. Don't expect me to get out of bed in the morning…
Jim: You're not an 'off the shelf' customer really. You're quite unique.
Gwenda: Am I?
Hamish: I reckon they might have guessed that with the hair, but anyway Gwenda. So, listen, the language that is used when it comes to people living with dementia is pretty important to you…
Gwenda: Absolutely.
Hamish: … as I understand it. So, if someone sees you standing outside on the grass, no shoes on, looking around, now they might describe you as, "Oh, she's got dementia, she's gone wandering." What would you say to them? How would you describe that?
Gwenda: Well, I guess it all depend if I had clothes on, I've got no shoes on but it all depend if I've got the clothes on as well.
Hamish: Does it sometimes happen without clothes?
Gwenda: It's sometimes happens, ask the post lady, she opened the door one day and there I was and she said, "Do you want to go and put a dressing gown on?" I said, "Why?" And I just took the parcel from her. It was an issue for them that I was waving my boobs around, you know, they're like tennis balls in a sock hanging but it wasn't an issue for me. And I think the same if I'm standing there because in my mind, whatever I'm doing, I'm doing with purpose. So, they may think I'm wandering. God! I hate the word wandering. We're either 'exit' seeking as in trying to get out, we're walking, or in our mind we're actually going somewhere or doing something or preparing for something. And if you saw me standing on the grass with nothing, with no shoes on my feet, would you think to ask me, you know, "What's happening for you? What are you doing?" Cause I may be communing with Mother Earth. I have one particular friend, I always say to her, "Get your shoes off and stand barefoot in the dirt" and that's what I'm doing. I'm doing something very real for me but that's your judgements and with dementia, everything comes with a judgement. Everybody judges you.
Hamish: So, explain that then for the child, the spouse, the relative that has come to see you and you're standing in the middle of the median strip with no shoes on, maybe with clothes or not, they might be a bit worried. Is, is Gwenda safe? How do you, how do you want us to interact with that? Because I suppose that for me, is someone who's had a parent that's done some stuff that I'm like, "Well that's, that's unusual", what do you want us to do?
Gwenda: I'd like you first of all to think about "Is it your fear? Or is it something your loved one would've done anyway?"
Hamish: Yeah.
Gwenda: That's the first thing.
Hamish: Yeah, well dad was pretty safe.
Gwenda: Then if you see me in the middle, then if you see me standing in the median strip, and I come, "How are you?" you know, "What are you up to?" "What, what are we doing?" We, we...
Jim: So, take the time to just...
Gwenda: "Where, would you like to come somewhere with me?"
Jim: Investigate?
Gwenda: Yes, that's the word. Find out, find out who I am.
Jim: And what you're actually doing.
Gwenda: "What am I doing? Where am I?" Because where am I in my head?
Jim: So, the offence comes really if somebody takes control and tells you shouldn't be doing this or you shouldn't be here. You really want somebody to invest the time to understand why you think it's okay that you are doing what you're doing. Yeah?
Gwenda: That's right, Jim. You've known me for five minutes, do you think anybody would tell me what I should be doing?
Jim: Uh Um.
Gwenda: I, it would certainly push me.
Jim: No even Hame would.
Gwenda: It would certainly push me to do something different I can tell you.
Hamish: I'm just picturing the staff in this residential aged care facility and you training them at the moment, "Gwenda Uh!"
Jim: They’re like, the one with the pink hair got no clothes on in the middle of the garden.
Hamish: Oh! She's coming, she's coming.
Jim: Sounds like you on a Sunday morning like that.
Gwenda: And it was actually interesting because one facility I asked straight out, "Can I walk around with no clothes on?" They said, "You can do what you like".
Jim: Really?
Gwenda: And other residents in that particular facility are very accepting and it's about who am I as a person, and different things surprise you, like the not being able to sign my name, that snuck up on me. I went to the doctor and said, “Why can't I sign my name?” And he said, “You're cerebellum”. I said, “No, you told me that was the falls”. Nobody prepares you for this adventure. Nobody says you can expect this; you can expect this, only that you can expect to die, that's about the only thing you know, but nobody prepares you. I'm going to go where nobody else fears to go. I, 'continence'. I had it in my advanced care directive, if I was doubly incontinent, I had no quality of life. Now, I've been to the urogynecologist, she wanted to do Botox, I said, "no way". The brace, is just doesn't get there in time from the bladder to the brain and all of a sudden, then it started coming out my bum and you're sitting on the chair and you think, I've got to go and do a poo and before you know it, it's already there, and on the lounge room floor, you just don't get that message in time. But you look at me, who would ever think that I'd be doubly incontinent? If I was doubly incontinent, I had no quality of life but I still do, because there's ways we can manage things. I'm never going to learn to get the message from my bladder to my brain; those neural pathways have gone, I can't save it, it's gone. So how can I manage it? Do you go on the clock? You find your own ways to manage it.
Jim: That is the key, really.
Hamish: And have you found a way to manage it?
Gwenda: I think I manage it fairly well. I wear black frilly continence nickers. I don't have to wear those white boring granny ones but it's okay because they're comfortable. I can sit on a plane and it can come and I don't feel wet. No caffeine. You can go eight hours at night with no caffeine. You can go, I mean you're still up, pulling everything out of the wardrobe or wiping in the kitchen bench with carrot cake or doing other things but you don't have to go to the toilet because you've got no caffeine, and that's about managing it.
Hamish: From my point of view, the value to doing this podcast and having these conversations is, I think you're shedding light on this in a way that people have never really understood dementia to be. You know, there is this belief that once you get a dementia diagnosis, that's pretty much it.
Gwenda: That's what I believed. That's what I believed. I went home to die, literally went home to die. I went for a whole season, never saw the roses, never planted my sweet peas actually, that I'd planted every St. Patrick’s Day since I was a little girl with my dad. Never planted them that year because I was going to be dead. If I was going to die within three years because I wasn't taking medication…
Jim: Devastating.
Gwenda: I was just going to do it and I was going to do it quick and I realised, I saw like a little light bulb turn on and said, "Well look, you can either go with this and let it beat you or you can take control of it". And yes, it has beat me in some ways, it really has beat me in some ways and even this realisation that really, I don't have a lot of joy. I can't laugh out loud. I would love to go and have a really big laugh.
Jim: Don't, you're going to make me come over and tickle you in a minute to get that laugh out.
Gwenda: Oh, I'd do anything for that, but seriously, I would love to have that really good laugh.
Jim: A real belly laugh.
Gwenda: Yeah. We've got to say, "Okay, there are some changes. What is it? What's happening for me?" Get that benchmark indicator and then go from there and see what you can do. And don't talk modifiable factors to me because I've never drunk, I've never smoked, I've never had an illegal drug, never had a cup of coffee, five kids, always doing the strength-based exercise and I got a diagnosis. And I've thought about it "Why did I?" I don't know but by Crickey, if I've got it, I'm going to make it work. I'm going to use it to make life better for somebody else.
Jim: And I think you've done that in bag loads and so you've been amazing for us, hasn't she? Absolutely inspirational and it's a pleasure to meet you.
Hamish: Gwenda, thank you.
Gwenda: Thanks so much.
Hamish: And Redley.
Jim: Yes, definitely Redley.
Hamish: She’s fallen asleep on the floor.
Gwenda: She's had a big day.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card:
To listen to the full podcast episode visit:
Dementia.org.au/podcast
Dementia Australia Logo
End of Title Card]
[END OF RECORDED MATERIAL]
Ask Us Anything
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. Welcome and thank you.
Jim: As dementia progresses, behavior can change. Sometimes in subtle ways and sometimes more dramatically. Hi, I'm Jim Rogers and this is Hold the Moment, Dementia Australia's award-winning podcast of real stories that help you navigate life with dementia. With this new season, we're also doing something a little bit different. It's called Ask Me Anything. You send us in your questions about living well with dementia, nothing is off limits here, and we will do our best to answer them as honestly as we can. Wilma has sent us a question via Facebook, and she asks - the afternoons are really hard for us, and I know that's often called sundowning. What can help with that? To help unpack it, here's Louise Pelusey, Helpline Advisor at Dementia Australia.
Louise: Hi Wilma, thanks for asking that question. And you're right, some people with dementia become more confused, anxious, and restless, late in the afternoon or evening. And, for a long time, this has been called sundowning. But we now refer to this as restlessness. So a person living with dementia may not be able to communicate to you the reason why they're restless, and it can be confusing and worrying for everybody. So, just be curious and explore what might be happening for the person. Some reasons include, memory loss of course, so a person might head out to visit a friend or go to the shops and forget what they or where they were going. They may be looking for someone from their past, or doing something associated with past routines, like going to work. They may be feeling boredom, agitation, discomfort, or pain. So, your person may be trying to leave somewhere that's too loud or too busy. So how you respond depends on the person and what it is that may be happening for them. It's very individual. We encourage regular check-ins with the GP to rule out anything underlying, like pain or illness. And always consider things like hydration and hunger. It's a great idea to keep a diary of the restlessness to see if you can identify a pattern. You might find that your person is being restless at a specific time of the day. Then we can learn how to redirect the behaviour with something purposeful that meets their need. You can remove items in the environment that could prompt restlessness such as handbags or jackets. And always orient your loved one to their usual environment and daily routine. Other things you can do, is ensure that your person has familiar items with them. Establish a safe place to walk. Ensure that they have identification on them, like an identity bracelet. Keep a list of familiar and favourite places that they might like to visit, and you can tell your neighbours and community. I think it's also really interesting to note that restlessness or sundowning, may include things like withdrawal or declining meals. Essentially, we need to consider and explore what need is not being met for the person. And you're so welcome to call the Helpline to do this.
Jim: Daniella called in with this question.
Daniella: Hi, I'm Daniella. I'm from Queensland. What can family carers do when their loved one reverts to mother tongue due to dementia and the family don't understand the language? Thank you.
Louise: Hi, Daniella. We do hear this from our callers quite a bit on the Helpline. A person with dementia reverting to their mother tongue. It can be really challenging for a person with dementia to find a language that is less familiar to them. So what can we do? Remember that what will work is different for everyone. Learn some key phrases and create a cheat sheet. Maybe have some bilingual family or friends that could help with this. And to make it easier, definitely keep the communication simple. Use brief and clear sentences. Ask clear questions with yes/no answers, and narrow down the options for your person to choose from. And remember that communication doesn't always rely on words. There are nonverbal cues, facial expressions, hand and body gestures that can convey warmth and meaning. Just like eye contact, smiling or holding hands.These things can actually be very reassuring. Create a calm environment, minimise background noise from TVs or radios, and make sure you have the person's attention before you start talking. Focus on one idea at a time, and allow plenty of time for the person to process what you've said. The use of pictures and symbols can be effective. Be mindful to not over complicate the situation, but if appropriate and accessible, a smartphone or tablet could be used by downloading a translation app. Definitely set this up in your own time so it's ready to use when you need it. For more formal situations, you could always hire an interpreter. We engage the use of interpreters at Dementia Australia when necessary, and like to be inclusive of all people. There are some things to avoid. Avoid arguing with the person, or trying to correct them when they speak in their native language. We also have resources related to the topic of dementia on our website in more than 40 different languages. Daniella, I hope that this has given you some food for thought, and some next steps with this situation.
Jim: If you've got a question, you too can also call the free National Dementia Helpline on 1800 100 500. Dementia Australia's trained advisors are available 24 hours a day, every day of the year. And look out for more episodes of Hold The Moment. This episode was produced by Deadset studios for Dementia Australia.
[END OF RECORDED MATERIAL]
You asked, we answered
This mini episode answers questions about unsettled evenings and times when a loved one’s language reverts to mother tongue. National Dementia Helpline Advisor Louise offers practical and compassionate strategies.
About the podcast
Hold the Moment is an award-winning podcast from Dementia Australia full of real stories about life after a dementia diagnosis.
Season three dives into the topics that can be hardest to talk about, with compassion, practicality and a unique sense of hope.
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The National Dementia Helpline
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