Planning Ahead
Understanding Palliative Care
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 joined to keep up that tradition. So, with that in mind, we now pay our respects to the Traditional Owners, to Elders past and present, to those First Nations people joining us here today.
[Music]
Jim: Welcome to Hold the Moment, a podcast from Dementia Australia. These are real stories from people living with dementia or caring for their loved ones.
Hamish: I'm Hamish Macdonald. I cared for my dad who was living with Parkinson's and Lewy body dementia.
Jim: And I'm Jim Rogers, and I'm living with young onset Alzheimer's.
Hamish: So Jim, this episode I think is a particularly sensitive one, and I thought maybe we should have a bit of a chat at the outset.
Jim: Okay.
Hamish: Because I can only imagine that for you, this is difficult to even think about, let alone talk about. And it's the end point. It's the dying bit.
Jim: It's the scary bit.
Hamish: Yeah. How much have you talked about it, thought about it?
Jim: I’ve thought about it, off and on. I try to, I'm in the mode of being super positive at the moment and so busy, that I haven't really focused too much on any of that. But there was a time when I was really digging into end-of-life and that sort of thing. What, what your capabilities are, what, how, what your, how you're allowed to do that, with the dementia diagnosis. So yeah, I know that is still around, but, I'm trying to still keep that on the top shelf for the time being.
Hamish: So, this episode, really, we're going to focus on palliative care. But I think it's worth addressing upfront, that many of the people you and I have met over the past few years doing this podcast, have wanted to talk about VAD, ‘Voluntary Assisted Dying.' (-Yeah.) Because, so often when someone receives a diagnosis of dementia, that’s one of the things they then want to know about.
Jim: Absolutely.
Hamish: And the reality is that under the laws that have been introduced in the different States and Territories in Australia, a, a dementia diagnosis effectively rules you out of having VAD available to you, because you have to be cognitive and have capacity in those final months of your life to be able to make that decision, for your (-Yeah.) doctor to review you, assess you and sign off at it. So, there's still some way to run in terms of that conversation. And it's going to be a public conversation, no doubt, a political debate, but we kind of want to acknowledge that, upfront.
Jim: Yeah, for sure.
Hamish: That, that is a question for many people, I think it's, am I fair to say it's been a question for you?
Jim: Absolutely, and it's something that I am quite interested in, and I really don't like the thought of going to the end stages where you've got no control over your faculties, or where you are, or who's looking after you. So, I'm very interested in what are those options. So, for me, I don't want to go that full journey, if I can avoid it. But there's a fine line there, in when do you make the decision?
Hamish: So, as a result of those conditions around voluntary assisted dying, the reality is for most people, palliative care is a really important part of the conversation. (-Yeah.) if you are thinking ahead, planning ahead. So that's what we're going to focus on really in this episode. And having gone through the end stages with Dad, as much as it wasn't a situation that he ever wanted or would've wished for, the end was very beautiful. And I think the way that the healthcare professionals delivered that environment, that context, that setting for him and for his family, was beautiful. And I feel actually, in the end, very proud of how we were able to create those circumstances for him at the end.
Jim: I think that's vital. It's vital because it is obvious that's going to happen. And if somebody has got informed, you know, experience, particularly in the field of dementia, that’s magical, really. So, this is going to be interesting.
[Music]
Betsy: If you've ever been in a hospital setting, it’s chaotic, it's noisy, it was frightening. And we didn't know what was going to happen minute to minute. And then when we moved to palliative care, oh, it was, it was like moving into a safe space where the noise went away, the fear went away. I think there was grief, but you know, lots of love.
[Music]
Jim: Betsy cared for her husband, Peter, who lived with younger onset Alzheimer's. And when Peter told her that he didn't want to move into residential care, she knew the end of his life would have to look a bit different to what she expected.
Hamish: So, Betsy's about to take us on a bit of a journey, about how she did things for her husband, Peter. Filled with love and care, and a desire to give him dignity, right until his last breath.
Jim: Hi Betsy, welcome to Hold the Moment. So, to kick things off, would you be able to tell us a little bit about your husband, Peter?
Betsy: Peter was diagnosed with young onset dementia at the age of 63. And he passed away late last year, at the age of 66. It was pretty quick. He lived with dementia three and a half years. And it was a pretty intensive time for all of us. Peter was a very courageous person and a really good person. And I look back on the time that we had while living with dementia, and I saw my, my role as a carer, as helping him keep his dignity. But I really see now how courageous it was, what he did. You know, putting himself out there, you know, every day. You know, trying to get out, do things, see people, when he had so many, you know, challenges with aphasia, and then, you know, physical loss of ability to do tasks and things like that. So, I think it's, it's easy for me now, a year down the track, to look back and see the positive things, you know. How well we lived, right until the end. How courageous he was, like I said, you know, he was supported really well by his friends, his family, and you know, while no one wants to have a young onset diagnosis, it's kind of what you do with it that counts, I think. And I feel, like I look back and I'm really, really happy at we, what we did with our time together.
Hamish: Was that an overt conversation that you had together about how to approach it, or this was just how he did it and how you did it and it, it somehow magically works?
Betsy: Yeah, you know, it's funny, we didn't have a lot of what you would think would be conversations about it. I think there was a little bit of me knowing what he wanted and some very specific instances of him expressing things to me. And I call him the three things that he wanted. One being, to live at home. Even though I had explored some, you know, residential living options with him. And two, was to have a family holiday. The four of us, you know, with our two daughters, and this had to be after the Olympics. So, I don't know if you're aware, my younger daughter was in the Olympics, and so she came home in August, and then Peter passed away in November. So, we had some really great time together, including that family holiday. And the third wish of his, was he, you know, in not a lot of words, he made it quite clear he didn't want to be sustained in a way that, you know, where his living was compromised. And he said it quite kind of like, you know, “When I get like this just..." But I knew what he was trying to say. He said he didn't want to live in care; he didn't want to have to be, you know, in a bed or you were restrained. And, you know, and I, that gave me focus, you know? And, you know, having him, helping him live with dignity gave me purpose. And yeah, so it was really hard. But at the same time, there's a sort of satisfaction that comes from fulfilling his wishes and knowing I did everything I could to give him the quality of life that he wanted.
Jim: So, was there any particular thing that sparked this conversation? You know, what actually got you both talking about whether he was potentially going to have palliative care or something like that? How did that come about?
Betsy: They were random conversations. So, in the last year, he had a lot of challenges with aphasia. So, there were a lot of conversations where, I actually, don't know what he was trying to say to me, (- Mm.) I could only guess.
Hamish: Betsy, I'm conscious that for some people listening, they might not actually know what aphasia is. Can you just describe that?
Betsy: Sure. So, it's when you have verbal challenges with the words that you want to say and you formulate in your brain, somehow they get jumbled up between brain and your, your lips and they, they come out and it comes out as like mishmash. (- Mm.) Like you don't, you know, some words might make it through, but a lot of times it's just like verbal, just confusion. But, I guess I look at it and say, "Well, it wouldn't have changed anything." I knew him well enough to know what he wanted. And, like I said, you know, I thought, “Oh, maybe we should move closer to family." "Maybe we should move into residential care." And then, you know, you have a clear path. (- Mm.) Right, you have, you know, independent living, assisted living, dementia care. And then, you know, but that would've been, for me, I wanted a clear path, but he didn't want a clear path. He wanted to be where he wanted to be, which was home. You know, he had his people, he had his coffee shop, you know, he had his support worker. And you know, that scared me to say like, "We'll live here and just take it as it comes." But, you know, it actually turned out, I guess as well as it could be.
Hamish: What you're talking about doesn’t seem all that uncommon. We've heard a lot of accounts of people with a diagnosis saying never want to go into residential care. But then somewhere along the journey, that becomes, maybe dangerous, or not the safest option or it's not in their interest. How did you balance that decision?
Betsy: So, I think when we, in the, we were in the last 12 months, and I started thinking about trying to move us into a facility which was going to offer a care path. And that was me, and I said, let's go visit this place. And, it was after that, that he told me, and you know, is fairly, in his way, that I want to stay here. I think those were the words he used.
Hamish: At home?
Betsy: At home. And you know, all I could say was, “Okay, well, we'll stay here as long as we can." And that's all I could say, because, I didn't know if at some point down the track...
Jim: What was ahead.
Betsy: It might be too hard for me. (- Mm.) Right, so at that point, I could say, "Okay," and be okay with it. But I didn't know whether six months, 12 months down the track, I'd have to make a different decision. And, you know, he had some issues with wandering at night, which is obviously a concern. And, you know, some challenging behaviours. And, at the end it, it became unsafe for him and for us. So, at the point where he went into hospital and then eventually palliative care. I knew that he couldn't come home again, and we, and be safe. You know, in talking to people about, well what can we do? You know, the first thing I heard was, “Well, a young strong male is not going to, you know, it’s going to be very hard to find a placement for him." So, I'm like, "Wow, that's, okay, that's not good."
Jim: No.
Betsy: But, um, it just, I think it became evident after a few days that he was resisting nourishment. And I was advocating for him, don't intervene. You know? And I feel that in his way, he, by going in the hospital, he was deciding for himself, "well, that's it then." Right? Not to be fed, not to be, you know, treated. And we had that conversation about, you know, what we would do with that. We wouldn't intervene. And then, but in the hospital setting, there’s lots of people that want to help.
Jim: Of course.
Betsy: You know, come in with the food and you know, things like that. Medicines, you know, he ran a fever, for example. And, I just had to say, "No, we're not going to intervene." And that, he wouldn't want that. So, yeah, I know the decision to put him in a care setting was probably going to come at some point. Um, I didn't know when. And I guess I just put that in that 'we'll deal with it when it happens.' And it just turned out that, you know, he was at home, right up until the end.
Hamish: So, someone listening to this might think, well, what's the difference whether they go to hospital or whether it's palliative care? Why do I need to think about this? What, in practical terms for you as a family, as a partner, what was different about going into palliative care compared with say, staying in the hospital?
Betsy: Mm-hmm. Okay, well if you've ever been in a hospital setting, it's chaotic. It's noisy. You talk to a lot of different people day-to-day, hour to hour. And you, I guess you find yourself telling the story. It's the same story over and over to, (- To multiple...) different people who were coming to, you know, offer their help. It was, it was frightening. We didn't know what was going to happen minute to minute. And, after a week when they said, “We're going to move him to palliative care." We'd had discussions about he might pass away during the night. So, I guess it wasn't, like, we didn’t think he was coming home. We thought, "Okay, I guess we could be at end-of-life." And then when we moved to palliative care, ah, it was, it was like moving into a safe space. Where, the noise went away, the, the fear went away. I think there was grief, but you know, lots of love. There was like room to breathe.
Hamish: You mentioned a holiday that he wanted to go on, and you did go on that holiday. Your daughter had been to the Paris Olympics. She was in the, is it called the, the swim...
Betsy: The artistic swimming team.
Hamish: Artistic swimming. And you went to a place that you'd been many times before as a family, but something happened while you were there. There was a particular moment that you, I think reflect on as, as kind of critical in Peter's journey when he was in the water. Can you share that with us?
Betsy: Oh, okay. We went to a place in Queensland called Mooloolaba. Which we used to take the girls to, maybe once or twice a year, we went there a lot. Um, so we got there, and everything was quite okay, you know, um, in terms, I think he felt the familiarity of the place because he was pretty settled. And then, I had made the decision, we’re going to go to Brisbane and see these relatives that, you know, he's very fond of, and we did that. And it was a beautiful get-together, you know. It was just, I looked back on it, he was so happy. But instead of going back to Mooloolaba, I made this decision, we'll go to a new place. And I look back on it, I go, "Oh God, why did I think that going to a new place would be a good idea?" It wasn't a good idea. Peter was very much an ocean person. He loved everything about it, you know, surfing, swimming. But he was very unsteady at the end. And it was, I think partly the dementia, partly his other condition. And he was fearful of the water. And so, we went to this second area, this new beach, and I got him very agitated and I realised, "Wow, that was not a good decision on my part, live and learn." But it was only three days, I think, we'll tough it out. And then on the last day we were there, we went down to the beach. It was a beautiful day. We had, um, just one daughter with us at that time. And even though it was a surf beach, just there was a sandbar that created this sort of pool. (- Yeah.) Between the waves and then the shore, and we were able to walk into that, into that shallow pool. And, I just saw this transformation where, you know, Peter, you know, he recognised it was the ocean, but he was able to, to float and not be, not be scared. (- Yeah.) And it was just a beautiful moment where he kind of was funnily able to be free, let go, float there and enjoy himself. And I was thinking, “Oh man, this is the last day we're here." We've just gotten to the point of, you know, we got it now. (- Yeah.) But that's, I mean, that’s how it is. I think it was, I mean, I'm very grateful to have that moment and like all of the moments that, you know, all the good moments that we had even, you know, right up to the end, so, that was...
Jim: Do you think that that was on, on his wish list, that holiday?
Betsy: It was, yeah.
Jim: Do you think having that come true and him having that experience, do you think that was impactful on him? Do you think he sort of had some connection with, you know, this is a big tick for me?
Betsy: I think he did. I, I know when he, even when he was in the hospital, there was, there was awareness there of some things. Not everything, but things like that. Like the, even for example, when our daughter was at the Olympics, he, you know, he had to watch from home. But he was so riveted, he knew right? (- Mm.) There wasn't any question about him knowing what was going on. He never forgot who we were. And I know that, I know that can happen. But that didn't happen with us, and I'm very, very grateful for that.
Hamish: Within a week of that beautiful moment in the water at Mooloolaba, you're back, you're in palliative care. It's your 25th anniversary. Can you talk us through that morning?
Betsy: Once Peter had been moved into palliative care, um, it was the day before, and I said, “This day is just for us." So, I said that to the girls. "This day, no visitors, no one else, this day is just for us." So, we spent the whole day in the room with Peter, and you know, one daughter was drawing, another one was, you know, maybe playing music. And it was just so sacred. It was really special. And because that, comparing that to coming in the middle of the night, cause you think something bad’s going to happen its, (- Yeah.) you could just be present, and it was very peaceful. And so, the next morning I said to the girls, “Just sleep in, I'll go in early." Because I wanted that time with Peter. (- Mm.) I wanted to have just 'us' time. And I went and it was probably early, like 7:30 or something. And of course, the ward's quiet. I just, you can just go to the room, you don't need, you know, have to navigate anything. And, I just sat there with him, and we probably had about four hours just him and I. And you just reflect on, you know, so many things. But you know, I think the good things, right, the, how it all came about, how we met, how, you know, I came to Australia not knowing what Australia had in store for me, but you know, found, Peter found my, you know, country that I call home now. It was, there's so much, so much great stuff there that I could just think about, and, you know, hope that he retained some of that. And then the girls came in around lunchtime and they had brought us some flowers, which was lovely. And then, you know, in the quiet, his breathing changed, and we could just sense what was happening. And we were all sort of holding our breath and listening for probably what felt like about 15 or 20 minutes. And it was just, it just ceased. And it was so peaceful. And we weren't even sure like, "Did that just happen?" But, you know, we were all there, so we went and called for the palliative care doctor, and he came and checked and he said, "Yes, he's gone." But when I look at the, that time and then the time after when we're, you're allowed to stay like, oh gosh, so grateful to be there, you know, with him, when he, when he, when he essentially let, let go. I don't know if, I don't know if I ever pictured it ending that peaceful or that, you know, beautiful, honestly.
Jim: So lovely to hear that it was a peaceful and lovely experience, which is such a difficult situation, isn't it?
Hamish: Well, I think it's such a contrast to most of the stories we hear about dementia. (- Yeah.) The chaos, the noise, the drama, the high and the low emotions that come, (- Yeah.) but to have an end (- Yeah.) that is dignified, that must mean a lot to you now.
Betsy: Yeah, it absolutely does and,
Jim: And to your girls.
Betsy: Yeah, for all of us and for his legacy. (- Yeah.) Like I said, you know, when I talk about Peter, we talk about, you know, he was just a great person, a great friend, great dad, great husband, everything. But it's, it's only recently, probably in thinking about what I would want to say with you, with you is that, you know, he really lived courageously with dementia. And, I'm just full of, I guess, admiration for how he chose to go about it. You know, he, he had a couple of moment, I mean a couple of moments where he was down about, “Oh, I can't do this anymore, I can't do that." But, most of the time he just got on with it. And that was, and that was Peter. That was him getting on with it, right to the end. So, in that last month of October, so we, we had the family holiday, but we also had two dementia morning teas. Yeah, for, you know, the Cuppa Time fundraiser. (- Yeah.) And they were so joyful. Like there were so many friends and supporters that came and he, and we're so happy. And then, you know, a couple weeks later I just say, “Peter's not with us anymore." No one could believe it. But, just to know that he had so many happy moments, right up until he didn't, you know, I just, I can't help but just be grateful for that. You know, I'm, I'm sad too, right? Peter shouldn't have left, lived much longer, right? Should've had the opportunity to experience, you know, things like, watching his girls, you know, grow up more, even though, even though they're young adults, but, what do you do? You know? You just get the, dealt the hand, you're dealt, and you just decide well, “Okay, this is how we're going to do it." And you know, you can't come through something like that and not know, like not be a better person. You know, I think you're stronger. You know the resilience is there, you know who you can call on that's going to be your network. And, you know, your friendships and relationships are profoundly changed when you go through that experience together. So, probably going to get sick of this word, but I'm so grateful for that.
Jim: That's so good. I think it's so good and we're so grateful that you've come in and shared all of that with us because it's so insightful. So, thank you so much.
Betsy: Thank you.
Hamish: Thank you very much.
[Music]
[Conversation held in a residential care setting]
Shamila: Hi, my name's Shamila, and I'm just here visiting my mum who's in residential aged care. She's got dementia Alzheimer’s and I'm her primary carer outside of aged care. “Hi mum, how are you going today?” We're just here talking together about the Nightingale Nurse Program through Dementia Australia. So, we've been a part of it for about two months now, and we've got a lovely clinical nurse consultant called Leigh Bryson coming to meet with us today.
Leigh: Morning.
Shamila: Come on in. Oh, Hi Leigh.
Leigh: Hello, well I'm Leigh, I'm the nurse, the clinical nurse consultant from Dementia Australia.
Shamila’s mum: Right.
Leigh: I'm from the Nightingale program. Would you like that brochure?
Shamila’s mum: Oh, I'd love that.
Leigh: You're welcome.
Shamila: I haven't got one like that.
Leigh: I'm Leigh.
Shamila: Lovely to meet you. So glad you can make it today, thank you. We were just discussing how it's so convenient that you come out to us like mum was saying, and it's really great.
Leigh: So how have you been going?
Shamila’s mum: Busy as always. Busy.
Shamila: Yeah.
[End of conversation in Residential care setting]
Hamish: If you or someone you love has just received a dementia diagnosis, you might well be thinking, I don't need palliative care. Not yet anyway. But, if one day you do, you’ll be much better off if you've been thinking ahead.
Jayne: Broadly, palliative care is palliative care and good palliative care really does fall under the same umbrella. However, for someone living with dementia, yes it can be quite protracted. So, it might be quite different to a cancer diagnosis, which might be, you know, quite quick. The other thing we need to think about too is for someone living with dementia, their ability to make decisions on their behalf at some point is likely to be compromised by cognition, by communication. So, they might go from being really independent about making decisions to needing some support, to needing someone else to make them on their behalf. So that's why we really focus on getting in early.
Jim: This is Jayne Littledike. She's the Nightingale Program Manager at Dementia Australia.
Hamish: So, the Nightingale program is a nurse-led dementia-specific palliative care program, that’s currently available in South Australia. Hey, Jayne.
Jayne: Hi. Thank you.
Jim: Nice to meet you.
Jayne: You too.
Jim: A lot of our listeners maybe aren't familiar with palliative care. (- Yeah.) Would you be able to sort of just outline exactly what that is?
Jayne: Mm. So palliative care is the care that somebody living with a diagnosis that might be life limiting or, or terminal. So, something that's not reversible. So, we're looking at management of symptoms, but not curative. So, living well, having good quality of life, having choice, having symptoms met from all aspects but not reversing. Yeah.
Hamish: But I guess when people use the term palliative care, (- Mm.) I think most people probably that assumes that means, someone comes in, you start giving some morphine and it just sort of eases them out. (- Yeah.) Is that what palliative care is?
Jayne: No, it's not. Very, very commonly thought though. And not just even in general public, you know, in all honesty, there's still sort of threads of that through the health profession.
Hamish: So, what is it? Like what practically (- Yeah, sure.) are you doing? Like if someone, you get the call to come in (- Mm-hmm.) and help a family, what do you do
(- Mm-hmm)
Jayne: Look, it depends on the person. So, we meet the person where they're at, and what are their goals, you know, what's pressing for them, what triggered that referral to us? So that's where we start.
Hamish: How far before death might this be?
Jayne: We, it should be from the point of diagnosis. So once, when someone has delivered a terminal diagnosis. So, when they're told that you know what, what you're living with now, isn't reversible. Good palliative care, so best practise palliative care starts at that point in time.
Hamish: So, what years out?
Jim: But that could be a long, long stretch.
Jayne: Absolutely. Absolutely, many years. And it might be that it starts with a conversation about "This is your diagnosis." "This is maybe the trajectory that we think, and what we need to start talking about is advanced planning." So "What are your wishes?" Documenting them now. Talking to the people around you. Your, the health professionals. The people that support you, about what you want as things progress. That might all be all you need at that point in time. But those decisions, you know, that's been informed and discussed at a really important turning point.
Jim: That, that really surprises me, so you guys (- Mm.) start at the very early stages, and get down all the notes on what that person might like, or what direction to lead them in, is that right?
Jayne: Absolutely. So, look, we do it as much as we possibly can. Obviously, there's limitations on workforce and those bits and pieces, but what we, across Dementia Australia, so might not just be the program that I work in, might be other services within Dementia Australia, absolutely have conversations with people around advanced care planning. Completing an advanced care directive, and what their diagnosis looks like, and what and how things might progress so they can plan and be proactive about that.
Hamish: Because we were talking before, Jim and I, (- Mm.) who explained, well, he's having a lot of fun, doing a lot of great things, and trying to be focused on that, and that's positive and the family equally is like, "Let's focus on all the great things." So, I can understand hearing Jim say, (- Mm.) "I don't really want to think about that."
Jayne: Oh, understood. Yeah. And not everybody does, if I'm honest. Not everybody will want a palliative approach to care. Not everybody wants to engage in those conversations, very commonly not. But I guess...
Jim: Because it's frightening. (- Yeah.) Isn't it? It's frightening to face what's ahead.
Jayne: It is, but I wonder if we, you know, it's the language that we use, it's the stigma attached with that language. So, the stigma attached to palliative care. If you go in and actually have an honest conversation about what it really means, and that it's empowering and that we're enabling choice, and that it's not morphing at end-of-life. And really open people up to it and meet them where they're at. Sometimes, it takes a bit of time. It might not be that I can pop out to somebody's home and in the first visit, you know, build rapport or connection that they feel like they're happy to have that conversation, but leave a little bit of information so they can digest it and next time we come back in we might approach it in a different way.
Jim: So do you have the availability to go out pretty early to people to try and build some rapport and connection prior to, obviously, palliative (- Mm.) care always makes you think of the last stages.
Jayne: Yes, absolutely.
Jim: So, do you sort of do, like a gentle (- Mm-hmm.) lead up for the family, (- Mm-hmm.) so as you can be across everything? For those final stages to try and...
Jayne: Absolutely, yeah.
Jim: ... make thinks as easy as possible.
Jayne: As much as possible. Certainly, within what we can offer as a, you know, with staffing. But yes, very much so. And people can come into Dementia Australia, even pre-diagnosis at any point and, and receive service and yes, start those conversations early and prepare them and be proactive because you know, as you said before, dementia can be quite long. It can be quite a long journey.
Jim: Exactly.
Jayne: So, we really want to get in early, when someone can make some decisions and choices on behalf of themselves.
Hamish: And what are the sorts of decisions they might be making?
Jayne: Yeah, lots of different things, I guess. So, if you think about a dementia diagnosis, it might be that as someone you know progresses or moves through that there, there's some changes around where they, they might be able to live or receive care. If I can no longer care for myself, I'd like to stay at home and I'd like to receive this sort of care, or I might like to transition into residential care. Things around, um, if I can no longer recognise family or people close to me, I don't want care that might prolong or is aimed at prolonging my life. What I want is to be relieved of symptoms of distress. I want to be able to access the garden. I want to be comfortable. I want people that are close to me to be around, if able. So those sorts of things around, you know, what's meaningful to you, and what might you like as things change.
Hamish: Can you be really specific and say at the end, (- Mm.) here's the music I want.
Jayne: Yep. Absolutely.
Hamish: Here's the people I want around.
Jayne: The colour lipstick I want to wear.
Hamish: I want some balloons in the room. (- Yep. Mm-hmm.) It's that specific?
Jayne: It can be, yeah. It doesn't mean that necessarily there’s a guarantee.
Jim: But you do your best.
Jayne: But absolutely. I've had people be incredibly specific about what they do and don't want, and it's very empowering for their families to know that. Even, you know, post death. What they might like as well, in-into that as well. So yes, people do want to communicate everything.
[Music]
[Nightingale Nurse program appointment conversation]
Leigh: Because we're all registered nurses and, and with probably a lot of experience between us all, and each, we can come out and talk to you about different things that might be affecting your quality of life.
Client: Alright.
Leigh: So, we can ask questions, and you know, dementia is going to be that long, lifelong thing for you, and we're lucky you’re 82 and you're actually incredibly well, physically.
Client: Yeah.
Leigh: But we don't know what’s coming and we don't know how long it'll go. And hopefully, when it's your time, it’ll be in your sleep, peacefully. But if it's not, we've got end-of-life support coming for you and me and anyone else.
Client: Yeah. I'm hoping to able to understand that. (- Yeah.) And I guess we, you have always to be attached to some form of dementia care support that takes you to the end.
Leigh: And this is it, dementia.
Client: That is very important.
Leigh: It's very important.
Client: It is hard, yeah. Nobody can say how long dementia will take when you will (- Mm.) be in that critis, err,
Leigh: Crisis.
Client: Crisis at the end. (- Yeah.)
Leigh: But you know, it is a life limiting disease.
Client: Yes, it is.
Leigh: And, um, yeah, it’s not going to get better. So, it is good to have some, for everyone to have some support, you know?
[End of Nightingale Nurse program appointment conversation]
[Music]
Hamish: Is palliative care different? Does it need to be approached in a different way for people living with dementia, compared with other conditions?
Jayne: Look broadly, palliative care is palliative care. And good palliative care, should, really does fall under the same umbrella. However, for someone living with dementia, yes, it can be quite protracted. So, it might be quite different to a cancer diagnosis, which might be, you know, quite quick. There's so many different types of dementia and some of them you might be, you know, 10, 15, potentially longer, post-diagnosis, to end-of-life. The other thing we need to think about too, is for someone living with dementia, their ability to make decisions on their behalf at some point is likely to be compromised by cognition, by communication. So, they might go from being really independent about making decisions, to needing some support to needing someone else to make them on their behalf. So that's why we really focus on getting in early so that someone has got the opportunity, like you're talking about, to write down, you know, what’s important to them, so that when those decisions perhaps need to, extra support that we're guided by something that’s meaningful, that's them. That we're, you know, optimising their choice and dignity. So, it is different. The other thing I guess that's tricky is that most palliative care tools, I guess that we have, or, or models of care, are based on oncology because that is, you know, broadly, the biggest focus around palliative care is cancer. Even though dementia is leading cause of death. So, there is work to do in that space around really understanding the progression and, and the key turning points for someone who is heading into a terminal phase.
Hamish: How is palliative care delivered if someone’s just living at home?
Jayne: We aim to keep people at home if that's where they want to be, and it fluctuates. So, it might literally be that we just pop out once every four to six weeks, see how things are going, do a really broad assessment of symptom, symptoms. Check over their medicines. What's happening in their life. How they're living, and really be there for the family, a lot of the time, that practical support. So, if something's changed, talk to me about it. What is it? And engaging with other health professionals. So, if they're having some home care support or the GP's doing something. Or somebody else is involved that we liaise with everybody and try and keep everybody connected.
Hamish: I think you are sensitively circling around something that I guess many families might experience when someone's living with dementia and that's, at a certain point, the views might diverge between what the individual wants and what the family wants.
(- Yeah.) Or who is best placed (- Mm. Mm.) to make a decision. (- Mm.) So, am I right in hearing from what you're saying, that that's part of your role is to help navigate that for,
(- Absolutely.) for a family?
Jayne: Absolutely.
Jim: Is that tricky?
Jayne: Yeah, very tricky. And to add to that, sometimes not everybody within the family has the same view either. (- Yeah.) So, you know, getting everybody on the same page, there can be a lot of grief and loss. So particular, you know, a common example might be that um, someone has in a sense promised that they'll keep their, their partner at home to end-of-life. But they're frail themselves or they've got, you know, there's lots of other things that going on in their world and that is just not something that we're going to be able to achieve. And sometimes that does happen. And so really supporting them to know we, we're going to, you know, transition somebody into another care environment. So probably residential care a lot of the time, and, and you know, supporting what their relationship might still be in and how they can still provide care and be important in that, but really managing that grief and loss that goes along with that as well. If that goes beyond what we can do as nurses, we’d obviously, you know, with consent, if they want to support them to go into counselling or something else as well so that they, they get that care that they need, as well.
Hamish: I think at the end, it can be very sudden for people. (- Mm.) Big build up,
(- Mm.) and then it happens. And then, the residential aged care facility wants you to pack up and go. (- Yep.) You're being asked to make a lot of decisions very quickly. Does the palliative care stretch beyond the point of death?
Jayne: Absolutely. So palliative care goes into bereavement care for families or someone, you know, really close around, I mean, really should offer it, you know, in all honesty, for at least six months post, doesn't always happen because of limitations in services.
Jim: I think that's fantastic because that's, (- Yeah.) that's the time when people really do sort of realise the impact of what's happening.
Jayne: Absolutely. And also, like you say things, you know, residential care, you pack up, pack up fairly and, and that's it. Someone's at home, there’s busyness when someone's dying. There's people in and out all the time. There's people checking in, they're calling. (- Mm.) You get past the stage of the funeral or, or whatever it is that you might celebrate that person's life, and it stops. And so that, that quite...
Jim: Quite abruptly.
Jayne: Yeah. It can be incredibly challenging. So yes, absolutely. Good palliative care continues into bereavement support for families.
Hamish: There will be people listening to this that think, “Oh, this is all very interesting, but I don't really want to think about it and I definitely don't want to talk about it."
(- Mm-hmm.) What would you say to them?
Jayne: Well, look, we're all going to die.
Jim: That's for sure.
Jayne: Yep. So, I think that, yes, it's uncomfortable, but it's going to be uncomfortable at any point in time that you have that conversation. And best to start it early and really think about what's important to you and about living well. So, when we talk about palliative care, what we're talking about is living well. Optimising the life that you have now and living your best life until the end of your life. So, really focusing it, in that way. Yeah.
Jim: It’s fascinating really how life is so predictable, (- Mm-hmm.) yet we all shy away from (- Mm-hmm.)
Hamish: This particular picture.
Jim: The final curtain.
Hamish: Yeah.
Jayne: Yeah.
Jim: And you know, it is the inevitable, isn't it? (- Mm-hmm.) The more planning, (- Mm-hmm.) that goes into it, (- Mm-hmm.) the more likely that it's going to be along the wishes of the person.
Jayne: Most definitely.
Jim: Who's going through the curtain.
Jayne: Yeah, and it's going to be gentler on the people that you care about.
Hamish: Jayne, thank you very much.
Jim: Thanks Jayne.
[Music]
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 so you don't miss an episode.
Jim: 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 Riordan. 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.
[Music]
[END OF RECORDED MATERIAL]
About the episode
Betsy had no idea the end of her husband Peter's life could be so peaceful. Peter lived with young onset Alzheimer's disease, and when the time came, he was clear about what he wanted: to stay home as long as possible, and not have his life prolonged beyond quality.
Palliative care gave them both room to breathe. Jayne, Nightingale Program Manager at Dementia Australia, reframes palliative care entirely, not as something that happens at the end, but as a way of living well from the moment of diagnosis.
Resources and support
Within the Dementia Australia Library the following topic guides are relevant to this episode and may be useful:
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.
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.
A national organisation providing resources and advocacy to support quality palliative care for people with life-limiting illness.
Watch the interview
In this video, we go one on one with our podcast guests.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Betsy: When we moved to palliative care, it was like looking into a safe space, the noise went away, the fear went away. I think there was grief, but you know, lots of love. There was like room to breathe.
Jim: Hi Betsy. Welcome to Hold the Moment. So, to kick things off, would you be able to tell us a little bit about your husband Peter?
Betsy: Peter was diagnosed with Young-onset dementia at the age of 63 and he passed away late last year, at the age of 66. It was pretty quick. He lived with dementia three and a half years, and it was a pretty intensive time for all of us. Peter was a very courageous person, and a really good person and I look back on the time that we had while living with dementia and I saw my role as a carer as helping him keep his dignity. But I really see now, how courageous he was, what he did, you know, putting himself out there, you know, every day. You know, trying to get out, do things, see people, when he had so many, you know, challenges with aphasia and then, you know, physical loss of ability to do tasks and things like that. So, I think it's easy for me now a year down the track to look back and see the positive things, you know, how well we lived, right until the end. How courageous he was. Like I said, you know, he was supported really well by his friends, his family, and you know, while no one wants to have a young onset diagnosis, it's kind of what you do with it that counts, I think and I feel, like, I look back and I'm really, really happy at we did, what we did with our time together.
Hamish: Was that an overt conversation that you had together about how to approach it? Or this was just how he did it and how you did it and it, it somehow magically worked?
Betsy: Yeah, you know, it's funny, we didn't have a lot of what you would think would be conversations about it. I think there was a little bit of me knowing what he wanted and some very specific instances of him expressing things to me and I call them the three things that he wanted. One being to live at home, even though I had explored some, you know, residential living options with him. And two, was to have a family holiday. The four of us, you know, with our two daughters and this had to be after the Olympics, so, I don't know if you're aware, my younger daughter was in the Olympics, and so she came home in August and then Peter passed away in November. So, we had some really great time together, including that family holiday. And, the third wish of his was, he, you know, in not a lot of words, he made it quite clear he didn't want to be sustained in a way that, you know, where his living was compromised. And he said it quite kind of like, "You know when I get like this, just..." but, I knew what he was trying to say, so, he didn't want to live in care. He didn't want to have to be, you know, in a bed or you were restrained and you know, and I, that gave me focus, you know? And, you know, having him, helping him live with dignity gave me purpose and yeah, so it was really hard. But at the same time there's a sort of satisfaction that comes from fulfilling his wishes and knowing I did everything I could to give him the quality of life that he wanted.
Jim: So, was there any particular thing that sparked this conversation? You know, what actually got you both talking about whether he was potentially going to have palliative care or something like that? How did that come about?
Betsy: They were random conversations every day. So, in the last year he had a lot of challenges with aphasia. So, there were a lot of conversations where, actually, I don't know what he was trying to say to me, I could only guess.
Hamish: Maybe also if you could just explain for listeners what 'aphasia' is.
Betsy: Aphasia is when you have verbal challenges with the words that you want to say and that you formulate in your brain; somehow, they get jumbled up between brain and your lips and they come out and it comes out as like mishmash. Like you don't, you know, some words might make it through, but a lot of times it's just, like verbal, just confusion but I guess I look at it and say, "Well, it wouldn't have changed anything".
Jim: No.
Betsy: I knew him well enough to know what he wanted and like I said, you know, I thought, "Oh, maybe we should move closer to family, maybe we should move into residential care." And then, you know, you have a clear path, right? You have, you know, independent living, assisted living, dementia care and then, you know, but that would've been for me, I wanted a clear path.
Jim: Yeah.
Betsy: But he didn't want a clear path, he wanted to be where he wanted to be, which was home. You know, he had his people, he had his coffee shop, you know, he had his support worker and you know, that scared me to say like, "We'll live here and just take it as it comes", but you know, it actually turned out I guess as well as it could be.
Hamish: I just want to bring you back to the decision about keeping him at home, because I think that is a particular pressure point for a lot of families, a lot of partnerships living through a dementia journey, whatever you want to call it.
Betsy: Mm-hmm.
Hamish: And yeah, there may be a time where it's not actually in their interest to be at home.
Betsy: Yes, yes.
Hamish: So how did you weigh all of that?
Betsy: Yeah, so I think when we, in the, we were in the last 12 months and I started thinking about trying to move us into a facility which was going to offer a care path and that was me, and I said, “let's go visit this place,” and it was after that when, that he told me, and you know, is fairly, in his way that "I want to stay here," I think those were the words he used.
Hamish: At home.
Betsy: At home, and, you know, all I could say was, "Okay, well, we'll stay here as long as we can.” And that's all I could say, because I didn't know if at some point down the track...
Jim: What was ahead.
Betsy: It might be too hard for me.
Jim: Mm.
Betsy: Right, so at that point I could say ‘Okay’ and be okay with it but I didn't know whether six months, 12 months down the track, I'd have to make a different decision. And, you know, he had some issues with wondering at night, which is obviously a concern and, you know, some challenging behaviours, and at the end it, it became unsafe for him and for us. So, at the point where he went into hospital and then eventually palliative care, I knew that he couldn't come home again and we, and be safe.
Jim: Mm.
Betsy: And so it happens that he didn't come home, he was in the hospital for a week, you know, and talking to people about "Well, what can we do?" You know, the first thing I heard was, "Well, a young strong male is not going to, you know, it's going to be very hard to find a placement for him.” So, I'm like, "Wow, that's, okay, that's not good.” It just, I think it became evident after a few days that he was resisting nourishment and I was advocating for him, ‘don't intervene’, you know? And I feel that, in his way, by going in the hospital, he was deciding for himself, well, "that's it" then, right? I'm not to be fed, not to be, you know, treated and we had that conversation about, you know, what we would do, that we wouldn't intervene, and then, but in a hospital setting, there's lots of people that want to help.
Jim: Of course.
Betsy: You know, come in with food and you know, things like that. Medicines, you know, he ran a fever, for example and I just had to say, "No, we're not going to intervene" and that he wouldn't want that. So yeah, I know the decision to put him in a care setting was probably going to come at some point. I didn't know when, and I guess I just put that in that ‘we'll deal with it when it happens’ and it just turned out that, you know, he was at home right up until the end.
Hamish: So, someone listening to this might think, "Well, what's the difference whether they go to hospital or whether it's palliative care? Why do I need to think about this?" What in practical terms for you as a family, as a partner, what was different about going into palliative care compared with say, staying in the hospital?
Betsy: Uh-huh. Okay, well if you've ever been in a hospital setting, it's chaotic. It's noisy. You talk to a lot of different people day-to-day, hour-to-hour and you, I guess you find yourself telling the story, it's the same story over and over.
Jim: To more people.
Betsy: To different people who are coming to, you know, offer their help. It was, it was frightening and we didn't know what was going to happen minute to minute and after a week when they said, "We're going to move him to palliative care." We'd had discussions about he might pass away during the night, so I guess it wasn't like we didn't think he was coming home, we thought, "Okay, I guess we could be at end-of-life" and then we moved to palliative care. Oh! it was, it was like looking into a safe space where the noise went away, the fear went away. I think there was grief, but you know, lots of love. There was like room to breathe.
Hamish: You mentioned a holiday that he wanted to go on and you did go on that holiday. Your daughter had been to the Paris Olympics, she was in the, is it called the, the swim...
Betsy: The artistic swimming team.
Hamish: Artistic swimming, and you went to a place that you'd been many times before as a family, but something happened while you were there. There was a particular moment that you, I think reflect on as, as kind of critical in Peter's journey when he was in the water. Can you share that with us?
Betsy: Oh, okay. We went to a place in Queensland called Mooloolaba, which we used to take the girls to maybe once or twice a year, we went there a lot. So, we got there and everything was quite okay, you know, in terms of, I think he felt the familiarity of the place because he was pretty settled. And then I had made the decision, we're going to go to Brisbane and see these relatives that, you know, he's very fond of and we did that and it was a beautiful get-together. You know, it was just, I look back on it, he was so happy but instead of going back to Mooloolaba, I made this decision, we'll go to a new place and I look back on it and go, "Oh God, why did I think that going to a new place would be a good idea?" It wasn't a good idea. And so, we went to this second area, this new beach, and I got him very agitated and I realised, "Wow, that was not a good decision on my part - live and learn.” But it was only three days I think, we'll tough it out. Then on the last day we were there, we went down to the beach. It was a beautiful day. We had just one daughter with us at that time and even though it was a surf beach, just there was a sandbar that created this sort of pool.
Jim: Yeah.
Betsy: Between the waves and then the shore, and we were able to walk into that, into that shallow pool and I just saw this transformation where, you know, Peter, you know, he recognised it was the ocean, but he was able to, to float and not be, not be scared.
Jim: Yeah.
Betsy: And it was just a beautiful moment where he kind of, was funnily able to be free, let go, float there, enjoy himself, and I was thinking, "Oh man, this is the last day we're here.” We've just gotten to the point of, you know, ‘we got it now’ but that's, I mean, that's how it is. I think, it was, I mean I'm very grateful to have that moment and like all of the moments that, you know, all the good moments that we had even, you know, right up to the end.
Jim: Do you think that was on, on his wish list, that holiday?
Betsy: It was, yeah.
Jim: Do you think having that come true and it may, him having that experience, do you think that was impactful on him? Do you think he sort of had some connection with, you know, this is a big tick for me.
Betsy: I think he did. I know when he, even when he was in the hospital, there was awareness there of some things, not everything, but things like that. Like the, even for example, when our daughter was at the Olympics, he, you know, he had to watch from home, but he was so riveted. He knew, right? There wasn't any question about him knowing what was going on. He never forgot who we were and I know that, I know that can happen, but that didn't happen with us and I'm very, very grateful for that.
Hamish: Within a week of that beautiful moment in the water at Mooloolaba, you're back, you're in palliative care. It's your 25th anniversary, can you talk us through that morning?
Betsy: Once Peter had been moved into palliative care, it was the day before, and so I said this stay is just for us. So, I said that to the girls, "This day, no visitors, no one else, this day is just for us" and we spent the whole day in the room with Peter and you know, one daughter was drawing, another one was, you know, maybe playing music and it was just so sacred. It was really special. And because that, comparing that to coming in the middle of the night, because you think something bad's going to happen, its, you could just be present, and it was very peaceful. And so, the next morning, I said to the girls, "Just sleep in, I'll go in early," because I wanted that time with Peter. I wanted to have just, 'us time' and I went and it was probably early, like 7:30 or something and of course the ward's quiet. I just, you can just go to the room, you don't need, you know, have to navigate anything and I just sat there with him and we probably had about four hours just him and I, and you just reflect on, you know, so many things, but, you know, I think the good things, right, the how it all came about, how we met, how, you know. I came to Australia not knowing what Australia had in store for me but, you know, found Peter. Found my, you know, country that I call home now. It was, there's so much, so much great stuff there that I could just think about and, you know, hope that he retained some of that. And then the girls came in around lunchtime, and they brought us some flowers, which was lovely. And then, you know, in the quiet, his breathing changed, and we could just sense what was happening and we were all sort of holding our breath and listening for probably what felt like about 15 or 20 minutes and it was just, it just ceased. And, it was so peaceful, and we weren't even sure like, "Did that just happen?” But you know, we were all there. So, we went and called for the palliative care doctor, and he came and checked and he said, "Yes, he's gone.” So, but when I look at the, that time and then the time after when we're, you're allowed to stay, like, oh, gosh, so grateful to be there, you know, with him, when he, when he, when he essentially let, let go. I don't know if I ever pictured it ending that peaceful or that, you know, beautiful, honestly.
Jim: So lovely to hear that it was a peaceful and lovely experience, which is such a difficult situation, isn't it?
Hamish: Well, I think it's such a contrast to most of the stories we hear about dementia, the drama, the high and the low emotions that come, but to have an end that is...
Jim: On that.
Hamish: ... dignified, that must mean a lot to you now.
Betsy: Yeah, it absolutely does, and...
Jim: And to your girls.
Betsy: Yeah, for all of us and for his legacy. Like I said, you know, when I talk about Peter and we talk about, you know, he was just a great person, a great friend, great dad, great husband, everything. But it's, it's only recently probably in thinking about what I would want to say with you is that, you know, he really lived courageously with dementia. And, I'm just full of, I guess, admiration for how he chose to go about it. You know, he, he had a couple of moment, I mean a couple of moments where he was down about, "Oh, I can't do this anymore, I can't do that" but most of the time he just got on with it and that was, and that was Peter, that was him getting on with it, right to the end. So, in that last month of October, so we had the family holiday, but we also had two dementia morning teas.
Jim: Oh, nice.
Betsy: Yeah, for, you know, the cuppa time fundraiser and they were so joyful, like there were so many friends and supporters that came and he, and we were so happy. And then, you know, a couple weeks later I just say "Peter's not with us anymore." and no one could believe it.
Jim: No.
Betsy: But, just to know that he had so many happy moments right up until he didn't, you know, I just, I can't help but just be grateful for that. You know, I'm, I'm sad too, right? Peter shouldn't have left.
Jim: Of course.
Betsy: Lived much longer, right? Should've had the opportunity to experience, you know, things like, watching his girls, you know, grow up more, even though, even though they're young adults but what do you do? You know, you just get the, dealt the hand you're dealt, and you just decide, "Well, okay, this is how we're going to do it" and, you know, you can't come through something like that and not know, like not be a better person.
Jim: Yeah.
Betsy: You know, I think you're stronger, you know, the resilience is there, you know who you can call on that's going to be your network and you know, your friendships and relationships are profoundly changed when you go through that experience together. So, probably going to get sick of this word, but I'm so grateful for that.
Jim: I think it's so good and we're so grateful that you’ve come in and shared all of that with us because it's so insightful, so thank you so much.
Betsy: Thank you.
Hamish: Thank you very much.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card:
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[END OF RECORDED MATERIAL]
Ask Us Anything
You asked, we answered
Episode released Thursday 20 August.
This episode answers a question about trusting your advice as a carer and advocating for your loved one in care.
Jayne, Manager of Palliative Care at Dementia Australia, 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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