Volledige transcriptie van The Paperwork That Can Spare a Family More Pain with Stephanie Wood

thinking about the potential for a story on this. 00:06:12.420 --> 00:06:16.740 And in fact, the story turned out not really to be anything like that at all. 00:06:16.980 --> 00:06:25.540 It turned out to be far more about advanced care directives or advanced health directives, as you would know well, they have different names in different states. 00:06:25.860 --> 00:06:33.300 And generally, advanced care directives aren't too much about the sort of music that might be played in your in the hospital ward that you're in. 00:06:33.460 --> 00:06:45.939 It's much more about what sort of intervention or otherwise you might get, whether it be intubation or which is artificial breathing or intravenous feeding. 00:06:46.100 --> 00:06:51.060 I mean, you can't in your advanced care directive, as I'm sure you've talked about extensively in previous guests. 00:06:51.540 --> 00:06:55.620 You basically say how much intervention you want at the end of your life. 00:06:55.780 --> 00:07:00.740 And this is a legal document that not enough Australians have. 00:07:00.900 --> 00:07:02.500 Now I'm trying to remember what the stat is. 00:07:02.580 --> 00:07:08.340 You might remember, Catherine, what's the stat for how many people in Australia have and don't have advanced care directives? 00:07:08.420 --> 00:07:09.620 It's nowhere near enough. 00:07:11.140 --> 00:07:15.700 No, it's it's somewhere even south of 40%, I think. 00:07:16.420 --> 00:07:19.220 That's right, that's what I'm remembering now, exactly. 00:07:19.460 --> 00:07:35.300 And so my attitude like the idea, I interviewed the the head the head doctor of palliative care at St Vincent's who talked about how infrequently those those advanced care directives actually come into the hospitals with people. 00:07:35.460 --> 00:07:40.740 It's all very well having one, but you need to have it with you to show healthcare professionals. 00:07:41.140 --> 00:07:46.819 And I interviewed a lovely couple from the Central Christ in New South Wales. 00:07:47.060 --> 00:07:51.220 The gentleman, the husband, has had very extensive health issues over many years. 00:07:51.460 --> 00:08:00.580 And after his last major heart episode, where it wasn't he wasn't expected to live, the doctors persuaded him to take out an advanced care director. 00:08:00.660 --> 00:08:04.500 So I had a chat to him and his wife about what that that what they'd put into it. 00:08:04.660 --> 00:08:07.300 I think I spoke to you and a couple of other people. 00:08:07.540 --> 00:08:15.060 Then sit when you sit down to write, it wasn't even in my mind to start writing about my father until I actually sat down to write. 00:08:27.540 --> 00:08:37.460 And it just came to me remembering my own father's death in 2010 in Queensland, just after Christmas, or New Year actually, New Year 2010. 00:08:38.899 --> 00:08:41.379 And I just thought this is the way into the story. 00:08:42.100 --> 00:08:44.899 So that's how it started. 00:08:46.500 --> 00:09:00.259 And I think

it's so such a great way to actually convey the elements, especially for someone who may have never experienced what it's like to be with someone when they are in their final days. 00:09:00.659 --> 00:09:04.019 Is that something that you feel comfortable talking through now, Stephanie? 00:09:05.139 --> 00:09:06.019 Oh, absolutely. 00:09:06.259 --> 00:09:08.340 And Dad would be happy that I was as well. 00:09:08.580 --> 00:09:14.179 He was very open about all sorts of things and he was a politician and public service was his life. 00:09:14.259 --> 00:09:24.819 And I feel as if in my writing, I'm often I like to think I'm carrying on that uh that sense of public service in my writing that I'm not doing through politics as he did. 00:09:25.139 --> 00:09:42.500 He was the first person in my life close to me who had died, who was admitted to a palliative care ward at the Nurser Hospital, the Dying Room they call it a ward, it was a room, they called it the dying room, which I quite like the the frankness of that that that name. 00:09:42.820 --> 00:09:47.300 I mean it was an absolutely horrendous it was a horrendous few years. 00:09:47.860 --> 00:09:49.860 He was diagnosed with prostate cancer. 00:09:50.259 --> 00:09:56.500 From memory, in 2005, I had a lot of time to process it all. 00:09:56.820 --> 00:09:58.899 It was a very traumatic period. 00:09:59.220 --> 00:10:02.259 In fact, for about five years, it was deeply traumatic. 00:10:02.820 --> 00:10:18.019 My father was my everything, and he was diagnosed with prostate cancer in 2005 and pretty much quickly immediately started to have drug treatment, radiation therapy. 00:10:18.340 --> 00:10:25.620 In fact, I think it was the radiation therapy that was the biggest, the cruelest blow to him, not even the prostate cancer. 00:10:25.940 --> 00:10:36.500 And I I wonder whether or not if he'd been in a city hospital rather than a regional hospital, having the radiotherapy at a city hospital, whether it might have actually been superior. 00:10:36.659 --> 00:10:44.019 And I certainly suspect that 15, 16 years on, or even actually it's two decades on from when he first started to have the radiation. 00:10:44.180 --> 00:10:45.460 I'm sure it's better. 00:10:45.620 --> 00:11:00.659 But it was at that stage, it did so much damage to his other organs, including his urinary tract and his digestive system, his bowels, and he lost continence, which was just absolutely dreadful for him. 00:11:01.060 --> 00:11:10.580 And I don't remember all the deep, gritty medical details, but it really wasn't the prostate cancer which killed him, it was his kidney started to fail. 00:11:11.620 --> 00:11:16.180 And that was where we ended up in early 2010. 00:11:16.340 --> 00:11:22.180 The doctors said that he could go onto dialysis, and dad said, nope, that's not what I want. 00:11:23.139 --> 00:11:24.659 No more treatment. 00:11:25.060 --> 00:11:32.100 And that's the stage at which the hospital put him in their dying room, as they

called it. 00:11:32.259 --> 00:11:37.700 Um, which, although that sounds really brutal, I guess it's very honest at the same time. 00:11:38.740 --> 00:11:46.899 And tell me, how was that for you when you heard him make that decision that he didn't want any more treatment? 00:11:47.379 --> 00:11:49.379 Oh, it was just devastating. 00:11:49.539 --> 00:11:50.820 I was angry with him. 00:11:50.980 --> 00:11:54.180 I tried to persuade him to have dialysis. 00:11:54.659 --> 00:11:56.420 He was just very vehement. 00:11:56.899 --> 00:11:58.659 Nope, that's it. 00:11:59.139 --> 00:12:08.420 And I remember sitting on his hospital bed crying, and he said it's okay to cry. 00:12:08.659 --> 00:12:13.379 And he handed me his handkerchief, which I still have when used from time to time. 00:12:13.620 --> 00:12:15.060 Um, yeah, it was terrible. 00:12:15.220 --> 00:12:30.580 We'd be living with this for so long, and then all of a sudden the doctors were telling us that if he didn't have dialysis, his kidneys would shut down within oh, I think they said five or six days, and from that point on he would be dead very, very soon after that. 00:12:30.899 --> 00:12:40.100 So from living with this for five years for it suddenly to have this very sharp, acute end point was just awful. 00:12:40.340 --> 00:12:44.659 And then the actual dying process is awful, awful as well. 00:12:44.899 --> 00:12:52.980 And if you've never had it, if you've never been through it with a with someone you love, you don't know how terrible it is. 00:12:53.220 --> 00:13:09.860 And I mean, the good thing was Dad did have an advanced health, he was very determined that he wasn't going to have dialysis and his advanced care directive, which he had stipulated that he was not to have any intervention other than to make him comfortable as much as possible and pain relief. 00:13:10.420 --> 00:13:15.220 But that did not make the process, I guess maybe it did make the process easier. 00:13:15.379 --> 00:13:20.340 I can't imagine how it would be if that hadn't been in place. 00:13:20.420 --> 00:13:39.700 And in fact, there was a day at the hospital where I went out to the nurse's station and there was a family there that seemed to be having a very heated discussion with my father's doctor, and I I think I overheard just tiny bits of their conversation, and my memory is that they were arguing between them. 00:13:39.860 --> 00:13:49.620 The family members were having a dispute between them about the best course of action for their father and or their mother, I can't remember whether it was a father or a mother. 00:13:49.700 --> 00:13:55.300 And from having interviewed for my article, my recent article, the head of palliative care at St. 00:13:55.379 --> 00:14:07.940 Vincent's, I know that's a very common thing that families, siblings can argue between themselves with their with the healthy parent, if there is still a healthy parent, about the care of the person who's unwell. 00:14:08.259 --> 00:14:16.899 And I just can't imagine how traumatic that would be if, say, my mother and brother and I had been arguing about the best thing for dad. 00:14:17.220 --> 00:14:25.860 And it just would have added to the horror of of what we went through and what dad obviously went through, is not is not pretty. 00:14:28.100 --> 00:14:32.899 And that period, how long did it last for? 00:14:33.300 --> 00:14:40.100 He fell unconscious, probably five or six days after he was admitted to that room, the dying room. 00:14:40.340 --> 00:14:51.139 I remember the Noosa Hospital set in very lovely sort of coastal bush landscape, and we'd wheel him in a wheelchair around the grounds of the hospital. 00:14:51.379 --> 00:14:55.860 And I remember the last time we did it, he was waving around him. 00:14:56.019 --> 00:15:08.580 And he was starting to, I mean, what happens when the toxins fill your body from the kidneys not being cleaned out is that your brain starts to be affected by those toxins, and he was starting to be a bit weird and silly. 00:15:08.820 --> 00:15:16.980 And I don't know whether it was his kooky normal sense of humour or the delirium that he was almost waving goodbye to the world. 00:15:17.300 --> 00:15:22.580 Um so strange, so weird, such a weird time. 00:15:22.740 --> 00:15:40.659 So I think he was conscious for about five days and then slipped into unconsciousness, I think, after that, and he didn't regain consciousness, and five days became about 12 days in the end, in which he was unconscious and his body was shutting down. 00:15:40.899 --> 00:15:43.620 The room smelt of decay. 00:15:43.940 --> 00:15:59.700 I didn't know that's what it was, but my brother, who had once visited a morgue, later told me that that's what the smell was, and we just were with him for one of us was them almost every minute of every day, or a family friend was there while he died. 00:16:00.019 --> 00:16:47.940 And, you know, I came to come into the hospital to look at the nurse's roster on the whiteboard behind the nurses' station and just pray that my favourite nurses were on, because there were two in particular that I just remember vividly who were just so wonderful and so caring and so reassuring, whereas others were not so we just felt that we needed to be wrapped up in just so much love from that the hospital staff, and I I I remember just almost bursting into tears when I'd come into the hospital to start my shift with dad if if you like, and I'd look at the nurses' board and the ones that I Wendy was one of them, and Gordon, Wendy and Gordon were their names, and if their names weren't on the board, I was just like distraught because it felt like I was on my own almost with Dad. 00:16:48.259 --> 00:16:53.139 We weren't, they the staff were great, but those two particularly were just wonderful. 00:16:53.379 --> 00:16:57.700 And I would say to the whichever nurse was on, I mean, does he know what's going on? 00:16:57.860 --> 00:17:04.980 Because he's lying there with his

mouth open and his mouth is drying out, and you're trying to swap his mouth to keep it moist. 00:17:05.460 --> 00:17:10.579 And we would I would say to the nurses, could he possibly know what's going on? 00:17:10.740 --> 00:17:12.019 Would he be distressed? 00:17:12.180 --> 00:17:17.539 And they were reassuring us, no, no, no, he's definitely unconscious, he's not aware of what's going on. 00:17:18.180 --> 00:17:19.700 But how do we know? 00:17:19.859 --> 00:17:25.299 I don't, I mean, it's impossible to know what that person in that bed knows. 00:17:27.379 --> 00:17:37.059 So, Stephanie, what do you think it was about Wendy and Gordon that you found comfort in? 00:17:37.299 --> 00:17:38.420 What were they saying? 00:17:38.500 --> 00:17:43.299 What were they doing that gave you reassurance that you needed at that particular point in time? 00:17:44.420 --> 00:17:55.379 It's it's very hard to pinpoint, really, but I think it was just their presence were just something ephemeral almost about them. 00:17:55.619 --> 00:18:04.259 They were just warm and kind and patient and didn't mind, didn't get cross if I asked the same question 50 times. 00:18:04.500 --> 00:18:10.420 And I was a very persistent advocate for dad and was probably a pain in the neck. 00:18:10.740 --> 00:18:11.539 Does he need this? 00:18:11.700 --> 00:18:12.339 Does he need that? 00:18:12.500 --> 00:18:13.299 What can I do now? 00:18:13.380 --> 00:18:14.180 What should I do now? 00:18:14.339 --> 00:18:15.700 What can you do now? 00:18:16.259 --> 00:18:20.579 And they never once got cross with me. 00:18:20.819 --> 00:18:32.819 I'd be surprised if they any nurse would get cross in that situation, but they never once not even a flicker of irritation crossed their faces, whereas perhaps others there were less patient with me. 00:18:33.620 --> 00:18:46.420 I suppose there's a level of which it's blurred now, the memories, but it's interesting that I remember their names so strongly so many years later, because they just had something very special about them, the way they cared. 00:18:46.819 --> 00:19:16.980 And I think too, now that I think about it, they love they were there when Dad was still conscious, and I think he got on really well with he had a wonderful sense of humor, was a lovely man, and I think they saw that in him before he slipped into unconsciousness, and so that probably that connection with him that they had that perhaps other nurses hadn't established, meant that their relationship to him once he was unconscious was warm and strong, perhaps. 00:19:19.539 --> 00:19:24.339 And how important is a sense of humor during that time? 00:19:24.500 --> 00:19:33.940 You were just talking about your dad, what you in reflection, he was sort of waving goodbye to everyone as you were taking him outside in the wheelchair. 00:19:34.980 --> 00:19:37.539 Oh, listen, there wasn't a lot of sense of humour. 00:19:38.420 --> 00:19:40.819 I have to be honest, it was pretty grim. 00:19:41.140 -->

00:19:51.220 One night my brother, who worked in as a Connelia for a very major Sydney restaurant, and he bought a bottle of expensive, very expensive French champagne. 00:19:51.620 --> 00:19:55.460 This is after Dad had slipped into unconsciousness. 00:19:55.700 --> 00:20:06.819 And my mother and brother and I sat around Dad's bed drinking champagne and singing to him dreadful songs that my mother knew from her childhood back in the 1940s. 00:20:07.140 --> 00:20:09.539 Pedro the fisherman, I seem to recall. 00:20:09.860 --> 00:20:11.059 God help us. 00:20:11.539 --> 00:20:16.180 You know, what if dad had been horrified and wanted us to shut up, but he couldn't tell us? 00:20:16.420 --> 00:20:20.019 That was about the funniest moment that I can recall. 00:20:20.180 --> 00:20:25.779 And the hangover the next day sort of eliminated any any humour that was followed to follow. 00:20:26.180 --> 00:20:27.860 Yeah, it wasn't funny. 00:20:29.539 --> 00:20:45.620 And it's interesting that you were saying that your father was first diagnosed in 2005 with prostate cancer, and then you're now in 2010, and you are told that it's only days left for him to live. 00:20:46.579 --> 00:20:51.140 How much uh resilience did you still have left in you when you were given that? 00:20:51.700 --> 00:20:53.220 You don't have any choice, do you? 00:20:53.380 --> 00:20:55.940 You just have to front up for it. 00:20:56.180 --> 00:20:57.539 There's nothing you can do. 00:20:58.099 --> 00:21:00.420 I think I'm still exhausted from it all. 00:21:00.900 --> 00:21:02.099 You just have to do it. 00:21:02.740 --> 00:21:05.620 I mean, what options are there? 00:21:06.339 --> 00:21:08.900 You know, he was the light, a great light in my life. 00:21:09.220 --> 00:21:10.660 You know, you don't walk away from that. 00:21:10.740 --> 00:21:22.660 And I'll even if he hadn't been a great light in my life, it's still something that's I mean, I'm not gonna be all sentimental about it and say it's an important passage and it's shit. 00:21:22.819 --> 00:21:24.660 And I'm single and don't have children. 00:21:24.740 --> 00:21:27.460 So God knows who's gonna be there for me if it comes to that. 00:21:27.700 --> 00:21:29.620 But it's all you can do. 00:21:29.779 --> 00:21:41.059 And I mean, it didn't get easier because then I'm the organizer in the family, and my mother and brother let me organise the funeral single-handedly, which was a fairly substantial funeral because of his public position. 00:21:41.539 --> 00:21:48.420 And I'm glad about this actually, but my brother went to view dad's body the day before the funeral, and I didn't have time. 00:21:48.579 --> 00:21:50.740 I'm glad I didn't, now that I think about it. 00:21:50.819 --> 00:21:52.660 I don't think my brother is happy he did. 00:21:52.740 --> 00:21:54.579 I think he possibly regrets that. 00:21:54.819 --> 00:21:59.700 But I was just so busy organizing the funeral, you know, the everything. 00:21:59.860 --> 00:22:02.660 And it was just so exhausting. 00:22:02.819 --> 00:22:06.980 I don't want to make myself sound like a martyr, but God Tatman was intense. 00:22:07.700 --> 00:22:20.740 And actually, I'm writing a story right now before I got on the call to you about packing up family homes again for the same editor at The Guardian, and then I had to pack up the family home, and it was a really big house. 00:22:20.900 --> 00:22:23.860 My mother was an only child when my grandparents moved to live with us. 00:22:24.019 --> 00:22:35.539 Mum and dad put an extension on the house, and so it turned up to be a five-bedroom house with three bathrooms and a library and a billiard room because we had to take my grandmother's billiard table, and it was just this thousands of books. 00:22:36.180 --> 00:22:37.299 They were collectors. 00:22:37.380 --> 00:23:26.120 My mother has hoarding tendencies, and it took me 12 years to clean the house out after dad died. 00:23:26.279 --> 00:23:38.120 Not there, I live in Sydney, the house is in Queensland, so I'd fly up once or twice a year for a couple of weeks at a time to tackle it, arguing with mum all the way because she didn't want to throw anything out. 00:23:38.360 --> 00:23:41.960 So that's the story I'm actually writing right now for The Guardian. 00:23:42.200 --> 00:23:43.240 What's the name of that book? 00:23:43.320 --> 00:23:45.640 The Body Keeps the Score, that trauma? 00:23:46.759 --> 00:23:48.279 Yeah, Bessel, Bessel Vanderkoff. 00:23:49.400 --> 00:23:49.640 Yeah. 00:23:51.320 --> 00:23:53.400 So there you go. 00:23:54.120 --> 00:24:00.120 And and so there's two really significant things that you just mentioned there. 00:24:00.519 --> 00:24:15.960 Firstly, that huge task of the funeral, followed by then really packing up not only just your father's life, but it sounded like your grandparents, and also helping with your mother and and downsizing. 00:24:16.279 --> 00:24:18.440 Like they're massive tasks. 00:24:19.240 --> 00:24:20.440 I did them on my own. 00:24:20.840 --> 00:24:28.519 Like, what is it, the things when you look back now that you just sort of think, oh my goodness, I wish I'd known. 00:24:30.920 --> 00:24:34.759 I don't know that knowing anything would have made anything different, to be honest. 00:24:35.080 --> 00:24:39.480 There's nothing like I know now could have changed anything. 00:24:39.640 --> 00:24:44.840 The house had to be cleaned out, dad had to die, funeral had to be organized. 00:24:45.559 --> 00:24:50.600 I don't know how to answer that question because make your parents clean their houses out sooner. 00:24:51.400 --> 00:24:54.039 But that's not easy, of course. 00:24:54.200 --> 00:24:59.400 I was trying to get my parents to do that, and they dad was so sick and he couldn't face that. 00:24:59.720 --> 00:25:02.440 And my mother doesn't like parting with things. 00:25:02.600 --> 00:25:05.960 We were having arguments over five centimetre pieces of string. 00:25:06.120 --> 00:25:08.519 That's a perfectly

good piece of string, she'd say. 00:25:08.600 --> 00:25:21.640 And I'm looking at this house with built-in robes in every room, a storeroom, a double garage, not a surface in the place without something on it, or a cupboard that wasn't stuffed with stuff, and you almost had to lean against the cupboard doors to close them. 00:25:21.960 --> 00:25:26.200 In a really big house, and my mother's arguing about a small piece of string. 00:25:27.000 --> 00:25:29.960 You can't change people's personalities when they're old, can you? 00:25:30.120 --> 00:25:31.480 So I can't answer that question. 00:25:31.559 --> 00:25:33.400 I don't know how I would have done anything if. 00:25:35.080 --> 00:25:39.640 How did you handle the piece of string conversation? 00:25:39.960 --> 00:25:50.680 There was a lot of yelling, and I was extremely angry, and I probably drank an awful lot of wine every night and got very, very cross. 00:25:51.960 --> 00:26:01.400 But but it it is like it is those strange, inanimate, insignificant items that can be the undoing of everything. 00:26:01.720 --> 00:26:05.160 Yeah, I I think Mum has some boarding tendencies. 00:26:05.400 --> 00:26:13.320 So people who have those tendencies place emphasis on items that other people don't see the importance at all. 00:26:13.799 --> 00:26:16.360 But for them it's deeply ingrained. 00:26:16.440 --> 00:26:18.519 And as I've just been writing in this article, I'm doing it. 00:26:18.759 --> 00:26:23.000 Mum was born in 1936, and her parents had lived through the depression. 00:26:23.320 --> 00:26:28.920 And I think that depression mentality is very, very strong in her. 00:26:29.160 --> 00:26:32.840 She, you know, would say to me, We had nothing, which wasn't quite true. 00:26:33.080 --> 00:26:34.519 She tends to exaggerate. 00:26:34.680 --> 00:26:37.960 She was not impoverished by any stretch of the imagination. 00:26:38.279 --> 00:26:41.640 But things were a scarce of that. 00:26:41.720 --> 00:26:48.759 You know, we live in a time of abundance where you know people throw stuff out into the hard rubbish that has perfectly good life in it. 00:26:49.000 --> 00:26:50.600 That never happened. 00:26:51.160 --> 00:26:53.240 That's a thing of the last 20 years. 00:26:54.120 --> 00:27:03.799 So the the ethos that she grew up with, not to throw things away, to respect material obsessions, because they were hard come by. 00:27:03.960 --> 00:27:05.000 It was hard to come by them. 00:27:05.160 --> 00:27:08.120 They were hard won, if that's the ex is that expression. 00:27:08.279 --> 00:27:18.759 I think you can understand that why it might be difficult for someone who grew up in that sort of era but also has hoarding tendencies to really struggle to throw things away. 00:27:18.920 --> 00:27:22.519 It didn't make the task any easier because it just had to be done. 00:27:22.600 --> 00:27:23.880 We had to be ruthless. 00:27:25.160 --> 00:27:27.799 And what were there some of the items? 00:27:28.200 --> 00:27:34.279 Do

you recall all of the sentimental stories associated with the items? 00:27:34.680 --> 00:27:42.120 And I'd written about this before, particularly from my mother's side, the family history story is very strong and vivid, and I've looked into it. 00:27:42.279 --> 00:27:51.880 And we actually not only had my grandparents' possessions in the house, but when they moved to live with us, the removal truck arrived from Sydney where they lived. 00:27:52.120 --> 00:27:57.799 Foot, I don't think anything was thrown away before it was piled into the removal truck to come to us. 00:27:57.960 --> 00:28:01.880 But my mother had an aunt who never had children. 00:28:02.039 --> 00:28:04.759 So my grandmother had inherited all of her sister's stuff. 00:28:04.920 --> 00:28:10.279 So it was actually, in effect, already two houses of stuff coming from Sydney to join our house of stuff. 00:28:10.360 --> 00:28:12.200 So the volume of stuff was immense. 00:28:12.440 --> 00:28:14.840 But now my problem is I took too much of it. 00:28:15.080 --> 00:28:16.680 My own apartment is stuffed with it. 00:28:16.840 --> 00:28:21.080 And my aunt entertained a lot, which she lived in America and entertained a lot. 00:28:21.160 --> 00:28:30.600 So there's a lot of just really lovely dinner serv beautiful dinner service that I actually used for the first time the other day because I decided can't stay in the cupboard any longer. 00:28:30.840 --> 00:28:35.559 And parfait glasses in in red and for Christmas and then green for St. 00:28:35.640 --> 00:28:36.680 Patrick's Day. 00:28:36.920 --> 00:28:40.200 Just really lovely stuff that how can you throw it away? 00:28:40.360 --> 00:28:44.200 We did get rid of an awful lot of stuff that I've kept a lot too. 00:28:44.360 --> 00:28:47.880 And so there's a lot of story and memory attached to an awful lot of things. 00:28:48.120 --> 00:28:52.680 And there were discoveries that were wonderful, like that great aunt, my great aunt, my mother's aunt. 00:28:52.759 --> 00:28:58.680 I found her wedding dress from the 1920s, which is still in box in my bedroom now. 00:28:59.080 --> 00:29:02.600 Yeah, lots of lovely things that all have stories attached to them. 00:29:02.759 --> 00:29:07.400 So I mean, there was some pleasure, and there were certainly moments of pleasure to discover things. 00:29:07.720 --> 00:29:11.880 And you bring up the fact that you live by yourself, you're single. 00:29:12.759 --> 00:29:22.279 When you think of your support network, I think they say to us that it you need at least five people around you to support you in a crisis. 00:29:22.680 --> 00:29:27.080 Who do you think of is your support crew that you could call on? 00:29:27.400 --> 00:29:30.039 It's it's small, to be very frank with you. 00:29:30.200 --> 00:29:33.640 I have a lot of friends, but some of them are older than me. 00:29:33.880 --> 00:29:38.920 I've moved around a lot in my life, and so a lot of them are overseas or in interstate. 00:29:39.160 --> 00:29:46.920 Well, I've lived in Sydney for nearly 20 years, but I didn't go to school here or university here. 00:29:47.080 --> 00:29:48.920 I didn't have my first job here. 00:29:49.320 --> 00:29:59.240 And I landed in Sydney as a 40-year-old, single, when all my contemporaries were having children and making friends at school gates and so forth. 00:29:59.480 --> 00:30:02.600 So it has taken a while to establish myself here. 00:30:03.000 --> 00:30:09.160 It's not so easy when you've been so transient to suddenly land in a town when you're older. 00:30:09.480 --> 00:30:12.920 I have some younger friends, but I don't like to impose on people. 00:30:13.080 --> 00:30:23.559 But you know what, Catherine, that I've read about increasingly in the last few weeks, it seems to be an increasing subject of discussion and an increasing phenomena, is the death dueler. 00:30:24.360 --> 00:30:25.799 Have you heard of those? 00:30:26.200 --> 00:30:27.000 Certainly have I. 00:30:27.240 --> 00:30:35.559 I reckon I'm going to find myself a good death dueler, and she's going to be with me, and I will pay her or him, we're more likely to be her, or they. 00:30:35.880 --> 00:30:37.160 They will be with me. 00:30:37.400 --> 00:30:41.160 If I start to decline, they will be on my payroll. 00:30:41.400 --> 00:30:48.279 So that's what I've almost felt quite heartened to see that that the talk about death duelers. 00:30:48.440 --> 00:30:49.960 But I mean, you know, you could have children. 00:30:50.039 --> 00:30:51.559 You could be estranged from your children. 00:30:51.720 --> 00:30:53.000 Your children might live overseas. 00:30:53.160 --> 00:30:54.519 They might not be very good people. 00:30:54.600 --> 00:31:03.320 You know, I don't think these days having children necessarily guarantees that they're the ones that are going to be at your hospital bedside bedside being your advocate. 00:31:03.720 --> 00:31:09.799 I think you clearly highlight that just even with the transient nature of how we live our lives now. 00:31:09.960 --> 00:31:13.880 We don't stay in the one place where we had our first job, went to school. 00:31:14.039 --> 00:31:17.160 We totally change numerous times in our lives. 00:31:17.400 --> 00:31:27.000 So there's a lot of us now who no longer have those sort of links to the community that we once had. 00:31:27.240 --> 00:31:29.080 And so it is interesting. 00:31:29.240 --> 00:31:42.039 A death jeweler, for those of you who may not know, is someone who is a non-medical support person that supports someone at end of life, or it could be in a planning stage and also supporting after death as well. 00:31:42.279 --> 00:31:46.840 So it is something that is probably an emerging workforce that we will see. 00:31:47.240 --> 00:31:48.200 I think you're right. 00:31:48.360 --> 00:31:52.759 And as the population ages, I think there's going to be more and more demand for this. 00:31:52.840 --> 00:32:02.279 And also in the years of someone's life, if they are on

their own or with little support, as they're aging, never mind a death dueler. 00:32:02.360 --> 00:32:03.480 What about an age dueler? 00:32:03.559 --> 00:32:05.000 Just someone who's there. 00:32:05.960 --> 00:32:13.000 That obviously there's all sorts of issues of trust and and you think police checks and all sorts of things. 00:32:13.240 --> 00:32:23.080 But it's going to be huge because I mean, how many people are out there, even as we speak right now, who have very limited support and are very, very unwell and old? 00:32:23.320 --> 00:32:25.240 I mean, it's horrifying. 00:32:25.799 --> 00:32:35.240 And also with the increased rates of loneliness and disconnection that we feel with even we can be in a fully crowded room and still very feel very much by ourselves. 00:32:35.480 --> 00:32:38.200 Doolers are also within dementia as well. 00:32:38.279 --> 00:32:40.279 So there's dementia doers as well. 00:32:40.519 --> 00:32:41.320 Uh yeah. 00:32:41.559 --> 00:32:44.200 So it's there's another article in it for you, Stephanie. 00:32:44.600 --> 00:32:46.680 Definitely I thought that just as we were just then. 00:32:46.759 --> 00:32:47.480 Yes, absolutely. 00:32:47.960 --> 00:32:48.920 Yeah, yeah. 00:32:49.240 --> 00:33:04.039 So looking back now, and certainly when you were talking to people with your article about your dad, where did you feel that the fact that he had written an advanced care directive? 00:33:04.920 --> 00:33:11.880 And given the fact that it was really 16 years ago that he did do that, did that make things easier for you? 00:33:14.120 --> 00:33:18.759 I guess it barely was noticeable at the time because it was just there. 00:33:20.039 --> 00:33:24.440 I think it would be you would only notice how that it wasn't easy if it wasn't there. 00:33:24.519 --> 00:33:25.320 Does that make sense? 00:33:25.400 --> 00:33:26.120 Like Yeah. 00:33:26.279 --> 00:33:39.240 And that I think that example of the the conversation that you overheard with your father's doctor clearly highlighted perhaps another scenario that may have been the only thing I was concerned about was is he comfortable? 00:33:39.400 --> 00:33:40.200 Is he in pain? 00:33:40.279 --> 00:33:41.160 Is he comfortable? 00:33:41.320 --> 00:33:42.519 What does he know? 00:33:43.240 --> 00:33:49.400 That last one, even if he was in yes, if you're in pain, even if you're unconscious, he would be exhibiting signs of pain. 00:33:49.960 --> 00:33:59.000 But all we needed to worry about was that and had you had discussions about what he wanted for his funeral? 00:34:00.440 --> 00:34:01.080 Let me try. 00:34:01.720 --> 00:34:04.360 I think he stipulated some music. 00:34:05.240 --> 00:34:08.039 And I added a couple of tracks to the music. 00:34:09.960 --> 00:34:19.000 He certainly stipulated he did not want it to be religious in any any way because he had lost, he was very religious when he was younger. 00:34:19.320 --> 00:34:32.039 He was an older boy in the Anglican church when he was young, but became very, very atheist as he aged and was very strident on the subject that no religion, no religious element. 00:34:32.599 --> 00:34:35.960 My uncle, my dad was an identical twin. 00:34:36.119 --> 00:34:48.440 And so my uncle, who died last year, I've lost track of time, but he was the sort of MC, if you like, at the funeral service, which was in a chapel at a funeral place. 00:34:48.759 --> 00:34:50.920 I have a ceiling made and across the wall. 00:34:52.119 --> 00:34:52.840 I'm not sure. 00:34:53.079 --> 00:35:00.199 So no religion, he loved opera and classical music, so there were a couple of he certainly stipulated some music. 00:35:00.519 --> 00:35:15.400 Oh yes, he told me you must not wear black, because I had lived in Melbourne for many years, and people in Melbourne know that black is often the colour of choice, if you live in inner Melbourne, particularly, and he hated me wearing black. 00:35:15.639 --> 00:35:20.440 He told me I was not to wear black, so I wore pale pink, which was not me at all. 00:35:20.920 --> 00:35:21.880 What else? 00:35:24.840 --> 00:35:26.599 That was about the extent. 00:35:27.400 --> 00:35:43.880 Oh, he did tell me because he wanted me to write obituaries for the newspapers, because he of course he knew I was a writer, and he did want some some celebration and form of an obituary of his career, political career, and his public service career. 00:35:45.400 --> 00:35:50.519 Public service as in, serving the public, not as in a public service. 00:35:53.480 --> 00:35:55.960 And did you write that obituary for your dad? 00:35:57.880 --> 00:35:58.440 Oh yeah. 00:36:00.360 --> 00:36:05.720 Once I finished the eulogy after the funeral, I started on the obituaries that he'd listed for me. 00:36:05.880 --> 00:36:06.679 Thanks, Dan. 00:36:08.200 --> 00:36:09.320 And I'm tired. 00:36:09.480 --> 00:36:10.920 Can I have a rest now? 00:36:13.079 --> 00:36:15.480 Is your mum still living in the home or have you down sight? 00:36:15.800 --> 00:36:24.519 In the last years of dad's life, mum and dad were spent an increasing amount of time at the family beach house, absolutely modest place on the Sunshine Coast. 00:36:24.760 --> 00:36:31.240 And so the house, the family house was in Toowoomba, just sitting there empty, except full of things. 00:36:31.400 --> 00:36:37.079 And it wasn't until after Dad died that I started the task of tackling the family house. 00:36:37.320 --> 00:36:42.920 So mum was living by that stage permanently in the other house at the coast. 00:36:43.240 --> 00:36:45.800 And so we'd go backwards and forwards. 00:36:45.880 --> 00:36:54.599 So I'd fly to Queensland, fly into Noosa, and then we'd drive up to Tawomber and spend a couple of weeks there, and then we'd I'd come back to Sydney. 00:36:54.840 --> 00:36:59.000 So a lot of my holiday time was sucked into that house. 00:36:59.400 --> 00:37:03.079 But it was empty and then it was sold, finally. 00:37:04.679 --> 00:37:15.400 So people talk

about emotional baggage, but you literally had the baggage of that entire house and all of that contents that you still had to deal with for years after. 00:37:16.440 --> 00:37:21.240 And my mother, being the collector she is, has filled another house with stuff. 00:37:21.559 --> 00:37:24.599 I will have in my life two houses to clean out. 00:37:25.000 --> 00:37:27.159 And she's 90, but she's going strong. 00:37:27.320 --> 00:37:30.039 She is she still lives in a the house at the coast. 00:37:30.440 --> 00:37:33.559 Going strong, but it's very full of stuff as well. 00:37:33.800 --> 00:37:40.920 And I'm guessing that by the time I have to clean that out, I'm going to be an old woman, given my mother's robust state of health. 00:37:41.079 --> 00:37:50.360 And I can assure you, I will not be doing it as carefully and as with as much consideration for her feelings, because right, you know, I expect she won't be there. 00:37:50.599 --> 00:37:56.440 I will be getting people in and just saying, I've taken what I want, do what with the rest of it. 00:37:57.800 --> 00:37:59.880 And that is the thing, isn't it? 00:38:00.039 --> 00:38:09.639 Is that we are informed by the generations that have come before us and it impacts how we look moving forward and the impact that we're going to leave behind. 00:38:09.800 --> 00:38:18.119 So how is that informed what you choose to actually hold and has moved into your own home? 00:38:18.360 --> 00:38:23.159 And what how you actually then form your legacy moving forward? 00:38:24.200 --> 00:38:27.559 That's something I am addressing in this article I'm writing at right at the moment. 00:38:27.960 --> 00:38:31.880 I brought way too much stuff from Queensland, to my place in Sydney. 00:38:31.960 --> 00:38:35.960 I've got a reasonably large apartment here, but it's fairly full. 00:38:36.119 --> 00:38:43.559 You know, a lot of old furniture from my mum and dad's house, a lot of books that I brought and other odds and ends of things. 00:38:43.720 --> 00:38:49.000 And when I started this process, I was 15 years younger than I am now. 00:38:49.240 --> 00:38:53.559 Because I pretty much started it in the months after Dad died in 2010. 00:38:53.720 --> 00:38:59.000 And with 15 years on me, I'm looking around my apartment now and going, I don't need all this stuff. 00:38:59.320 --> 00:39:08.519 And while I only bought things that I really liked and loved and had meaning and a story to them, it's still too much. 00:39:08.760 --> 00:39:13.240 And I have two nieces and a nephew, but I cannot imagine they're going to be. 00:39:13.639 --> 00:39:15.960 I think they think my place is really interesting. 00:39:16.119 --> 00:39:20.599 They're young adults now, but I can't imagine they're going to want very much from it. 00:39:20.840 --> 00:39:23.320 You know, we're the IKEA generation now. 00:39:23.960 --> 00:39:35.000 I would like to start selling stuff off, but it's adding a glass, etched glass ice bucket in the sort of an amber coloured etched glass. 00:39:35.559 --> 00:39:41.400 And it's been sitting on Facebook Marketplace now, they've probably deleted the listing, it had no interest whatsoever. 00:39:41.559 --> 00:39:42.760 And I know what it is. 00:39:42.920 --> 00:39:49.320 It was a good quality object, but no one's interested in the amber etched glass ice bucket. 00:39:49.880 --> 00:39:59.559 And I guess because I'm a freelance journalist, not earning a huge amount of money, I would really prefer to try and sell some of the nice stuff than actually just drop it off at an opshop. 00:39:59.960 --> 00:40:06.519 But I think there might be some opshop visits in my future because I have a lot of stuff to get rid of. 00:40:07.639 --> 00:40:14.360 When our friend died, we engaged a auction house to come and value everything. 00:40:14.440 --> 00:40:17.559 And that's how we cleared a lot of things very easily. 00:40:17.639 --> 00:40:27.960 But it is a challenge, especially when there's sentimental value too, and the best way to actually make sure that you get a return on the on what you'd like. 00:40:28.760 --> 00:40:29.400 That's right. 00:40:29.559 --> 00:40:31.800 And people talk about brown furniture. 00:40:32.039 --> 00:40:35.400 No one's interested in brown furniture anymore, as in the old antiques. 00:40:35.639 --> 00:40:47.079 I sort of mix some brown furniture in with Lauder Touches, so it's not all overwhelmingly antique y and grandmother-y, but I don't think my nieces and nephew are going to want any brown furniture whatsoever. 00:40:47.240 --> 00:40:51.960 The op shops are just going to be inundated and be saying no, we can't take it. 00:40:52.119 --> 00:40:56.360 And an awful lot of stuff is going to be just sent to landfill, I fear. 00:40:57.960 --> 00:41:11.720 And given what you've experienced, Stephanie, what would you say to a family who has just been at that stage that your dad was in in 2005, just with a diagnosis? 00:41:14.760 --> 00:41:18.200 Well, make sure the documentation is in place that's necessary. 00:41:18.440 --> 00:41:21.639 Advanced care care directives, power of attorney. 00:41:21.800 --> 00:41:23.400 I'm trying to, is there anything else? 00:41:23.480 --> 00:41:23.960 I can't remember. 00:41:24.039 --> 00:41:26.360 It will be all of the adequate documentation. 00:41:26.519 --> 00:41:31.720 And I think you want that, just surround that person with love as much as you possibly can. 00:41:31.960 --> 00:41:38.360 And try and keep the family fights to a minimum because that's distressing for everybody, particularly the person who's unwell. 00:41:38.599 --> 00:41:40.760 I mean, not that dad saw that. 00:41:41.240 --> 00:41:42.760 We weren't arguing. 00:41:43.079 --> 00:41:46.760 But what one of the things that the palliative care specialist at St. 00:41:46.920 --> 00:42:00.119 Vincent's told me when I interviewed her was that frequently you will see that she says that the tendency is that if a family is very fractious in in life, they're going

to be very fractious at someone's deathbed. 00:42:10.280 --> 00:42:22.440 And when you look back on those twelve days, what is it that you do daily differently now based on that experience? 00:42:29.320 --> 00:42:30.679 I can't answer that question. 00:42:30.840 --> 00:42:32.920 I don't do anything differently. 00:42:34.840 --> 00:42:35.880 I don't know. 00:42:36.200 --> 00:42:37.639 I really don't know. 00:42:37.880 --> 00:42:39.400 It's just fucking problem. 00:42:39.800 --> 00:42:41.960 It's horrible and it's hard. 00:42:42.519 --> 00:42:43.800 I can't tell you. 00:42:43.960 --> 00:42:45.559 It's just awful. 00:42:46.679 --> 00:42:49.800 You don't want anyone to go through that. 00:42:50.280 --> 00:42:54.679 Just pray that you're locked off, your life is locked off just like that. 00:42:54.840 --> 00:42:59.639 No ill health beforehand, that you just go because it's miserable. 00:43:00.039 --> 00:43:01.320 Don't have advice. 00:43:01.480 --> 00:43:08.519 I really don't have any advice for anyone who is on the cusp of that experience because it is hard and brutal. 00:43:08.840 --> 00:43:19.720 And even if you perhaps had a difficult relationship with the person and you didn't love the person as much as I adored my father, it's still hard and brutal. 00:43:19.960 --> 00:43:25.800 And possibly then comes with all sorts of really complicated conflicting emotions as well. 00:43:26.360 --> 00:43:28.440 Pray that you get great nurses. 00:43:28.599 --> 00:43:33.000 Pray that you're in a great hospital with great palliative care expertise. 00:43:33.320 --> 00:43:38.360 I could say go and meditate every morning before you go to hospital, but you're probably not going to do that, are you? 00:43:38.679 --> 00:43:43.960 You're so stressed and in such a state and in such a hurry and a panic that you're not going to be. 00:43:44.119 --> 00:43:47.159 Self-care is probably the last thing you're thinking of. 00:43:47.639 --> 00:43:49.639 It's just a brutal time. 00:43:50.200 --> 00:43:56.920 The only thing that makes it slightly better is if there's no disdoubt about what the person who's dying actually wants. 00:43:57.240 --> 00:44:04.519 Get the paperwork in order because that will clear away just a small amount of potential conflict. 00:44:06.039 --> 00:44:11.480 Well, I think that's a good way to end the conversation, and I think that's great advice to end on. 00:44:11.960 --> 00:44:13.320 Thanks, Stephanie. 00:44:13.800 --> 00:44:14.679 Thank you. 00:44:15.079 --> 00:44:18.519 We hope today's conversation gave you something to think about. 00:44:18.679 --> 00:44:26.760 If it brought something to mind that you haven't organized yet, talked about, or decided on, don't try to do everything at once. 00:44:27.079 --> 00:44:29.880 Start with one simple step. 00:44:30.200 --> 00:44:40.039 We've created a free three-minute critical info check to help you see what you've already got covered and what your next step could be. 00:44:41.880 --> 00:44:50.679 And if this episode has brought up feelings for you of grief, loss or bereavement, please note that you don't have to navigate that alone. 00:44:51.000 --> 00:45:00.200 We have an after death guide to support you, and you can find grief and bereavement support organizations through the Critical Info Resource Hub. 00:45:00.599 --> 00:45:07.800 The links are in the show notes, and remember, you may not be ready to die, but at least you can be prepared. 00:45:10.360 --> 00:45:12.920 What if something happened tomorrow? 00:45:13.240 --> 00:45:20.679 A sudden hospital stay, an accident on an overseas trip, or something happening to someone you love. 00:45:21.320 --> 00:45:24.360 Do you know where the important documents are kept? 00:45:24.679 --> 00:45:27.800 Can someone speak for you when you can't? 00:45:28.119 --> 00:45:30.840 Do you know your loved one's wishes? 00:45:31.159 --> 00:45:34.440 You don't need to organize everything today. 00:45:34.760 --> 00:45:38.840 Take our free three-minute critical info check. 00:45:39.079 --> 00:45:44.039 It helps you see what you've already got covered and what your next step could be. 00:45:44.360 --> 00:45:46.920 Three minutes, one next step. 00:45:47.159 --> 00:45:48.920 The link is in the show notes. 00:45:49.159 --> 00:45:53.880 Critical info is your backup plan for life's unexpected moments. 00:45:54.440 --> 00:46:00.039 If someone came to mind while you were listening to this episode, why don't you send it to them? 00:46:00.280 --> 00:46:07.639 Sometimes the easiest way to start a difficult conversation is to actually start with someone else's story.