FACING DEATH: Judith Leeson AM on EMBRACING Our Mortality

In this heartfelt episode of Don't Be Caught Dead, I sit down with the remarkable Judith Leeson AM, a passionate advocate for those living with disadvantage and a champion for end-of-life planning. At 90 years young, Judith shares her incredible journey, from her early memories during the Great Depression to her extensive career in early childhood, disability, and career development. We dive deep into the importance of having open conversations about death and dying, and how these discussions can empower us to take control of our futures.

Judith's insights are both profound and practical. She reflects on her own experiences with advance care planning, including the challenges she faced when navigating her husband Brian's recent Alzheimer's diagnosis. Judith emphasises the need for deeper literacy around death and dying, advocating for a shift in how we approach these conversations in our families and communities. With her unique blend of wisdom and warmth, Judith inspires us to embrace our mortality and plan for a dignified end of life that reflects our values and wishes.

Key points from our discussion:

- Advance Care planning is an investment in your future and should be a living document that evolves over time.
- Open conversations about death can foster understanding and connection within families.
- It's essential to choose a substitute decision-maker who truly understands your values and wishes.
- Death literacy should be integrated into the national educational curriculum to normalise discussions around dying.


Remember; You may not be ready to die, but at least you can be prepared.
Take care,
Catherine

Resources: 

LinkedIn: https://www.linkedin.com/in/judith-leeson-am-8a497613/
Website: https://www.advancecareplanning.org.au/

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Music composer: Ania Reynolds - https://www.aniareynolds.com/

Transcript

0:02

We are often desensitized to death instead of being sensitized to the whole process. We don't see that leader where advanced care planning could be extraordinarily helpful, particularly if people are unable to articulate what they would like. I mean, my husband and I have got very different ideas about how we want our funerals to be. He doesn't want one. And I want to party. Welcome to Don't Be Caught Dead, a podcast encouraging open conversations about dying and the death of a loved one. I'm your host, Catherine Ashton, founder of Critical Info, and I'm helping to bring your stories of death back to life because while you may not be ready to die. At least you can be prepared. Don't Be Caught Dead acknowledges the lands of the Kulin Nations and recognises their connection to land, sea and community. We pay our respects to their Elders, past, present and emerging and extend that respect to all Aboriginal and Torres Strait Islander and First Nation peoples around the globe. Today I have with me Judith Leeson. Judith has been a passionate advocate for people living with disadvantage throughout her career and has enjoyed leadership roles in early childhood, disability and career development for nearly seven decades, delivering services in the not for profit sector and through her family business Vector Consult. Building individual and community independence and capacity through innovative evidence-based programs Appointed as a member of the Order of Australia in 2005 for significant services to the community, particularly through support for people seeking opportunity for lifelong learning and career development. She has been given the unique. of a lifetime achievement award by the Career Development Association of Australia, and is a fellow and life member. Thank you so much for joining us today, Judith. Thank you for having me, Catherine. Now, Judith, I had the pleasure of sitting next to you on a table at a recent symposium that Advanced Care Planning put on in Adelaide in November of last year. And I was really blown away. I think it was quite a challenging or brave decision that Advanced Care Planning did in planning that symposium. Because the lineup and the way in which they started was having yourself on a panel with a series of older Australians talking about your own personal experiences in relation to advanced care planning and it wasn't all positive, was it? Awesome. And I have to say that there was a few things that I noted that really struck me about you, Judith. And my first, you know, notes that I wrote in my book here was, worked until the age of 83. And you're now 90, you're still living in your home, but the thing that I just thought was the most beautiful thing and one of my takeaways that I just thought was gorgeous was when you talked about your husband, Brian, and you referred to him and I've noted this quote down, we are one, my husband. And I thought that was just such a beautiful way to actually, you know, refer to your husband and your relationship. Now you have had quite an amazing career and not only with your working life but then also your volunteering roles since you retired at the, I think you worked part time up until the age of 85, is that right? That's right. Yes, I've just seen my last client. Oh really? Yes, they linger on sometimes. I think it's affection rather than dependency. Oh, that's so lovely and I'm not surprised whatsoever Judith. So Tell me Judith, I'm sure we can learn more about your career as we go through the conversation, but going back to that time where we first met at the Advanced Care Planning Symposium, you know, what inspired you to actually have your passion for advocacy in relation to end of life planning and helping people really can take control of their futures? Where'd that start? Well, I was born during the Depression and my earliest memory was when I was about three. A man came to our back door with three boxes of matches to sell for one penny each. This has been emblazoned in my memory. My family had a very large business of general stores in outer metropolitan areas. In those days you also had wheat for the chickens, you know, it was everything. So we had boxes of matches in our house. But my mother bought two boxes, and I can remember it. She was standing there, and she said, I would love to buy some mattress from you. Gave him three pennies, but let him keep the other box. And he cried. I don't remember any more than that, but I think at that stage, there was a spark and in our family, which was, my parents were dedicated to community service through their church. but also outside of the church. And I just developed a very strong sense from then on that was encouraged by my parents to look at how we could make the world a better place for other people who weren't as fortunate as we were. And then I was five when the war started, World War II. We've had several wars, many wars since then. But. My family were very active in the community. We supported my mum's sisters, whose husbands were serving overseas. They had their babies at our place. We looked after them. I collected newspapers and knitted socks for sailors. I hope they never put them on. They would have been so uncomfortable. And collected bottles. anything to raise money and also through the Red Cross. So, from a very early age, I not only had that strong sense of social justice, but I had a really strong sense of agency. I could do things that made a difference. I didn't have things done to me and I didn't do things to people. It was really for people. And during the war, I mean, we didn't endure much hardship in Australia, but there was certainly a whole lot of problems with families when. They had serving members overseas and my family supported at least a dozen families through their business so that they could manage and there was just so much that you could do and you knew that it was a good thing to do. So, yes, I guess I started off like that. I could see that we were very privileged. We weren't a wealthy family. But we were a comfortable family. And so, you know, I was always probably chastised for being talkative at school. But I was always given extra little things to do, like writing the news in grade six for the local school netball team. So, and in the church, I was given opportunities to lead, to speak publicly. I've put those days behind me, actually. Now I am not a religious person, so I don't have that faith that's sustained by parents, but I have those values. that I hold really dear to, and they are just so embedded in my life that sometimes, well, I don't have to think about them. They're just there in what I try to do. Obviously I fail sometimes, as everybody does, to live a life of total integrity, but I do try very hard. To have a life of integrity and purpose. And Judith, I'll come back to those values in a moment because I know that you're a parent and that I think that when we're raising children, that's when we really. Have to really clearly define what our values are when we bring up another generation But the thing that strikes me about you is that you ran your own business for many years And where did that start? Like what year did you actually start running your own business as a woman when You know, you think that a majority of women, my mother is 85 and I know when she talks about opportunities, I know that when she was working at her age, her first job that she had, most women of her era had to give up their job when they got married or when they got pregnant. And so that was very much the feeling that I have about that culture at that era at that time. So when did you start your business? Well, I came from a business family. And my father was an innovator and started up a number of organizations for young people, particularly young men who didn't seem to have much opportunity through men's basketball. So he was the national president of the Men's Basketball Association. For about 40 years, I think, and started up a men's basketball association in South Australia. So he was a director and founder of something which is used to be called United Grocers. And he was the chair. So I had that model of taking advantage of opportunities without. Being eager for promotion, you know, in my teaching, after eight years of teaching junior primary kids, which I absolutely love, I became a school principal. Now, I was only 26, and I was given my own school with 15 teachers, all of whom were 20 years or 30 or 40 years older than me. And I loved it. So I actually had a career when most of my contemporaries were getting married and having children. By the time I was married, their children were in primary school. So I married Brian at 31 and I had to resign, of course, for the compulsory three days. So my super wasn't ever paid, it didn't have to be, because I had a break in service. When I first started teaching, I earned two thirds of the male wage. That was injustice. So injustice always sparks me. Through activity, well, to thinking about it, and then say, How can I change this? So as a young school principal I was very innovative. Brian and I then lived in London and I was taught in the East End at Bethnal Green, a school noted for the difficult background of their children. So when we came back, I unexpectedly had two children, both girls. But within about three years of being an at home mum, I had that feeling that there was more to my life than rearing children, which I regarded as incredibly important. And I went to work with the Autistic Children's Association part time. And within a couple of years I was working with the director in diagnosing autism and in providing the first programs. And what period was this? Well this was when I was in, I went from early childhood disability and then I was recruited, well poached I think, to run an early intervention program at Flinders University for children with Down syndrome. And that was where I was. I discovered that teaching is often telling people what to do. Disability is finding out what people can do and encouraging them to take the next step. So, I was kind of transitioning into a different mode. Well, I happily was retrenched from that job on a funding issue. I like to think it wasn't a performance issue. And I spent two really dark years feeling so strongly about the injustice. But I instigated a court case, and I felt that I was vindicated. So, I'm not afraid to take action. And what year was this in? Was this in the early 70s at this stage? Yeah, yeah. Well, it moved up to the 80s actually. Yeah, right. So I, well, once the children went to school and I got the job with autism, and then I was retrenched, I had two years where I was clinically depressed. I could not. believe that people would be so cruel and dishonest. And you said that during that time, even though that you were in your darkest depths, you still had the ability to fight for what was right and take people's support. Yeah. I had some counselling. You know, my husband was retrenched from a mining company. He was a geologist and had moved into research. And his company just deprogrammed his key one day, so that when he got to work, he couldn't get in the door. And that was because that company had lost millions of dollars in an overseas venture. So they decided that they would cut off their research as a savings. It's always the first to go, isn't it, research? It's research always seems to be one of the first things to go. Yeah, because they haven't discovered a major mining site for five years. I mean, you only do that every 30 years or 40 years. Such unrealistic expectations really, wasn't it? But what I saw, because of my counselling during that time when I was not working, I kind of thought I might have retired. But as I got my energy back, and I looked at the materials that My husband received from his outplacement counsellor. I realised there was not a single word in there about loss or grief. And, you know, it was, we'll set you up in an office in a high rise building. You know, you'll have your own secretary. We will help you, right? Your resumes, you know, it was never going to happen because the most important thing to deal with when people are in a crisis is to help them find their own way out of that process. And that's interesting because that comes back to that experience that you had from also what you were mentioning earlier about transitioning from being a teacher where you're telling people to actually seeing what people need and then providing what they need to help themselves out of a position. Yeah, yeah. So I looked at the material that Brian had and I thought, um, There's an element missing in our placement work and it's called counselling. So I decided I'd learn to type because I thought I could be a good PA for somebody. So I went to the Commonwealth Employment Services and they gave me a provider and I went for an interview which seemed to go on much longer than I would have expected. And at the end of the, I always kept thinking, heavens, if you have to go through this process to learn to type, what if you wanted to do something like, you know, be a hospitality worker, what would you have to do? But at the end of the interview, they offered me a job, but the job was working with single parents returning to the workforce. So I had a brief induction, sitting in on a service which I could only describe as damaging to the participants. And the next week I had my own course to run. So I stayed there for a year. I became the manager after six months of a larger area, regional area, and I was retrenched again because it turned out that my employer had not been entirely honest and I looked a bit threatening, I think. Because I was asking difficult questions and getting non answers. So anyway, I was retrenched once again. I took an unfair dismissal court case on board. Resented myself and was once again vindicated. I don't want to sound smug about this though. Because I prepared so well. you know, for that. So, I thought, well, I think I set up my own business in competition to the man who'd retrenched me, and I did. And that took a while because I read everything I could about career development from 1907 onwards. So I'm a voracious reader. I love reading and I love learning. So I put in a proposal to the Commonwealth and was accepted and ran a three week career guidance course. And how old were you when you started your own business, Judith? Yeah, 57. And this would have been late 80s, early 90s? Yes, we started our business in 1991 and we got contracts. I hired premises in Adelaide in the CBD, hired a secretary and there you go, off we go. So, because I think we use the evidence, Rather than a tick box approach to career development, we were always in work. And then we started to employ people, large contracts to do our placement work with the Department of Defence, DVA, tax, even education and employment. And Our business really prospered for a long time, but unfortunately during that period of prosperity when I was taking on so much additional voluntary work as National President of the Korea, Development Association and I helped set up the industry body. One permanent employee was meticulously defrauding us because she had control of our accounts. So we lost all our money and apparently we also owed money to tax. All sorts of places. And when, later on, we used my husband's superannuation to pay everybody. So, with our values, we couldn't go bankrupt because they were our debts. So, we just rebuilt the business. So, how long did it take you to rebuild that business? Well, we decided that we would just be a mum and dad business. As we were rebuilding, I don't think my husband would ever let anyone go near our finances again. And he didn't trust me not to employ people with a bad record because I always could see the good in them and thought the bad record could be left behind, but sometimes it can't be, just occasionally. So, we We gradually recovered and instead of doing big Commonwealth contracts, we did state government ones and we worked from home. So, after we'd recovered a bit from the fraud, we decided that we'd have a new start and we would move to the country and buy a little farm. That's where we live now. Oh, that's beautiful. Really beautiful. We made it beautiful. It was just a cottage in a paddock. with a big shed away from the house. It sounds like that your time and the cottage has, you know, I think you've mentioned that it's over 20 years now that you've been there with your husband. And from my understandings in our earlier conversations, you've mentioned that you'd like to stay there as long as possible. So Judith, when you were in the symposium last year, you did touch on the challenges that you have with just exactly what you're referring to then is the fact that you've got the neurologist saying that Brian can drive his car, yet he is deemed as far as making decisions in relation to his advanced care planning, that because of his diagnosis, he's no longer in deemed competent. I believe that's the term that they use to make his advanced care plan. And what other limitations have you found given your experience with not only Brian, but yourself personally in recent years? Well, I might just go back a little in time when In 2020, I was unexpectedly admitted to hospital with acute sepsis and spent four weeks in the Royal Adelaide Hospital, during which time I had my hip replacement washed out, which was a major surgery. And during that time, when I think I was probably quite, Delirious. A lovely young intern came and sat down by my bed and held my hand and said, Now Judith, have you done any thinking about how you would like your end of life to be? I thought, it started me back into reality, I think. I said, well, I don't really need to plan yet, do I? And he said, well, you know, could we talk about this? Look, he looked about 15, he was probably, you know, a young, a very young intern, but qualified as a doctor, of course. And he gently kind of prompted me to say, well, you know, I wouldn't want to be brought back to life by a defibrillator because I know the shocking damage that can cause to older peoples. It's not a very safe procedure for someone of my age. So we had a little chat, but when I went into rehab for six weeks and finally came home, I said to Brian, you know, this doctor felt that we should have do advanced care planning. Now I had heard about it. Because I read very widely, and I had an interest in aged care at this time. Because when I went home, I had to have some support in the house. And some clinical services. So, we went to see a lawyer. I mean, I come from a family of lawyers as well. And our family, uh, in the law, our children. And so we went to see a lawyer and made a new will, very simple one, much simpler than our previous one, which was probably 30 years old, I think. And we filled in and filed for clear. planning document and I think that I didn't come back to that document until I started reading when I was invited to the Advanced Care Symposium to prepare myself and I looked through the document which I have beside me and it was kind of, it's almost as if we had a tick and flick questionnaire and we just copied out phrases. Or sentences. So, even though we thought, we did it at home, and we did it together, but even then, after my, near escape from death and we still felt that we hadn't quite captured the spirit of end of life planning for us. What do you think was missing from that, Judith, because that's something that I noted here is when you were talking about the fact that it was a ticker box experience and it was very sterile. So in hindsight, what. Do you feel other things that would give you more feeling like it was something planning for yourself that represented you and Brian? Well, I think we need deeper literacy. in death and dying, a deeper understanding of the processes of dying. But what we lack is the ability to forecast the time and the manner of our dying and our deaths. And one thing that we really lack is good medical knowledge about these things. So, I have been reading much more deeply in this area, and I am delighted now that I'm on the board of Flinders University's Research Centre. for palliative care, death and dying. And whenever I'm involved in something, it's got to be 100 percent involvement. And so I'm reading a lot more and learning a lot more about the wonderful resources that are available to help people. Understand and navigate end of life. And what sort of things have you found that have stood out for you that have enriched that process or will perhaps make those conversations around end of life planning easier? Well, Brian now has a terminal disease which has changed. Everything in our perception. I have many physical health issues, some of which are moderately serious. But in spite of the fact that I have very impaired mobility, actually I feel fit. I may not be healthy. Well, I think I'm even healthy. I think I acknowledge my comorbidities, but I don't spend too much time worrying about them. I just get on with life. But for Brian, the diagnosis, of course, caused him to feel extremely angry because he prizes, I think, intellectual excellence and evidence based practice in everything he is, after all. a scientist at heart. I'm a helper, but we've managed to combine our activities so that we complement each other, but now I'm moving into a totally different role, and I'm not his carer yet, but I propose to be his carer when he needs to be cared for. But, I find that word tricky because I care deeply for him now, and little things that I do would show him how much I care. So, the dynamic has changed between us I think, as his disease advances very slowly, but because I'm always been interested in psychology, there are subtle changes. That means that I need to be more thoughtful before I speak. sometimes. So that I don't trigger confusion. I mean, Brian has always laughed and said, the way I speak is tangential. You know, I don't go around in circles. I hop from one thing to another as a new thought emerges. I have to be very careful now not to do this, but keeping our conversation on an even plane has never required any effort before, but now I need to be more thoughtful about it. What I say and how I say it because I want him to be happy and I will be happy too as he is happy and he's happy working outside. So our routines have changed a little, mine have changed a lot more than his. He's still doing what he's done for the last few years and that is keeping our property in pristine condition. In so far as that's possible in the back roots of the Adelaide Hills. I mean, we have PO and branches all over the place, so we say that's habitat. That is good. I like that. It is very good habitat. It can stay there and produce very good habitats in the paddock. It's great and the sheet managed to navigate it really well. Big trees cut up by someone who comes to do that. And so, we try and live fairly sustainably. So, when a big tree goes down, we have it cut into big pieces, we season it for two years, and then we put it in our combustion heater, which warms the whole house. So, and these are the routines that Brian loves. You know, we manage our own water supply. We're having to buy in right now, which is unusual. We buy a tanker of water every fortnight now because we haven't had any rain. All of that gives him purpose, it has meaning to both of us and it keeps him active because he has to respond to the seasons as well as everything else. How have you been able to document those things that are valuable to Brian? Have you been able to formally document them in the advanced care plan? Or is it a conversation that you've had with the family about what you value? How do you communicate what your needs are for a time where you may no longer be able to communicate those Judith? What we're doing is we're preparing together two new advanced care plans because I have nominated Brian to be my substitute decision maker and I'm not sure that legally he could be that person now. Of course he could be now at this moment but perhaps later. Not so. So that then is a big decision. Which of our children? Our three much loved children, all so different in personality. Who do we nominate to be our Advanced Care Planner? And that's a challenge. They all say they will be, if we want them to be. So who? Who knows us best? Who understands our deeply held values best? And who understands how we have navigated our pathway through life more completely? Well, they all think they do. I love them for that. So, that's something we will try and decide as a family, but it's difficult to have family discussions sometimes, because of people's different work lives. One of our daughters lives in Perth, so, you know, these are not easy decisions to make. The things that you were just mentioning then are things that are definitely points that need to be considered. And also, you've mentioned, you know, a will. A will is a very different document to what an advanced care plan is and I had a wills and estates lawyer on last year and he was also talking about the fact that challenge of finding the right person within the family who would have the ability to say if it was appropriate at the time, okay, my parent does not wish to have end of life support and so we'd happy to turn that off. And it takes a different type of person in the family to have those qualities than what it does to actually have the legal conversations. Absolutely. And so I think these matters need to be handled delicately and with diplomacy so that one member of the family doesn't feel marginalized from the processes. You know, I don't think end of life planning is easy. And I think even though my husband has Alzheimer's. He is still, I know, perfectly capable of making informed decisions. He's still a good critical thinker, but in the law, he's treated differently. Those two words, not competent, are like a dagger to the heart, because That's what we have valued, not just competency, but whatever we've done, we've tried really hard through learning and getting extra experience to be competent and then to go to the next stage to deliver. excellence, particularly in our work. I don't think we think like this in the family, you know, that we have to be excellent. We are just who we are to the family. And it seems, Judith, that, you know, we're talking about, you know, your stage that you're at now and with Brian's diagnosis. However, it seems that the qualities that you've had with your family of honesty and integrity and those values, they seem to have been also based on open conversations and continuing conversations. So what would you think we need to see happening in relation to the fact that our lives do change? We do have to spend money. These are sometimes roadblocks that people put in the place saying, I can't, you know, do my end of life planning, or I can't do a will because then it'll change. What do you say to those sort of challenges or roadblocks that people have in relation to end of life planning? Well, I think end of life planning is an investment in your future, so that you can invest your end of life with some of the qualities and the activities that you hold dear, that you hold closest to you. So, I think that end of life planning A document should be a living document and often we'll need several changes, if not more, depending on when you do it, because we can never predict when we will die or how or where or why. Now I'm sorry, some people can predict why, but I can't. I don't know how I'm going to die. Or when? Will I be ill? Will I be in hospital? Will I fall over and have to be operated on again? You know, it'd be nice. And you're right, we don't know. And so Judith, what do you think you would like to see done in relation to Australian policies or systems about end of life planning? Well, I'd like to see end of life planning remain an individual choice. And not ever to be compulsory because that's when people are mandating what could, should, or could not be said or done. So I would really like it to be voluntary, but I would like to see death literacy enhanced and introduced into programs about human development. In schools and at university, I think that within a citizenship framework, it is possible to talk about the stages of development of our citizens. I am still a citizen, still a very active citizen, and so I would like my rights under Australian law To be respected because I'm a passionate. Australian. I love my country and I am so pleased that I happened to be born here just by accident I imagine. I think that death literacy is a really important area. We're not very accustomed to death in our society. People don't have Nowadays an extended family all living together where when grandma dies she's laid out on the kitchen table and washed. That doesn't happen anymore. We've moved on from that society that understood and respected the stages of death and dying. It doesn't mean everybody was able to Be part of that process in a way though, that reflected their personality and their wishes and their values. I'm still learning so much about this. I just will never be able to learn enough. But what I'm understanding better now is the processes. of dying, which would be at the last stages, but the absolute necessity for palliative care to be available when people are in the end stages of life. But I'm not talking about the last two days. Or the last week, I'm talking about a medically predicted period of time where people are able to be supported and even made more aware of what is happening to them. So that they can understand better. And I think that will help people say, I want to plan for my end of life, but I'd like to include not just family, but friends and colleagues who become friends in that process if they wish to be involved. Not everybody wants to be involved. It's so true though. You know, what you were saying is that, that you're talking about the, really the life cycle. Yeah. And at, at this point in time when we're in our standard sort of education system, we cover on birth, I think we cover on reproductive system, and then there's nothing about the inevitable death that we will all experience. Life ends at retirement. It does for some people. Yeah, but the thing is, is that, you know, death can happen at any stage during that process. It can. And so I think I totally agree with you about seeing it normalised as part of the curriculum. I think that would be an amazing step forward. And then it allows you to actually think about it as much as what you, Have it as your life, you know, because it's just part of it. It's another stage that you experience and then as you were talking about it Understanding what those stages could look like if you go down this path but there's so many very ways in which we live and there's so many ways in which we die and look I think that I love the idea of putting it in the curriculum. I think that will encourage a lot more deaf literacy and understanding within our community. So I think that's a great idea, Judith. I think we're often desensitised to deaf if we turn on the television, you know. Particularly if my husband and I love watching streaming services and he does like to watch some war movies, you know. I love it. Bang, you're dead. That isn't how people end their lives very often, thank heavens. Unless it's during war. But you see people falling down pretending to be dead, and you know they're going to get up and be in the next series. So, we have been desensitized. Instead of being sensitized to the whole process, we don't see that lead up where Advanced care planning could be extraordinarily helpful, particularly if people are unable to articulate what they would like, then a supported or designated decision maker will be making those decisions. They need to know what you would like. I mean, my husband and I have got very different ideas about how we want our funerals to be. He doesn't want one and I want a party. And it's important to document the differences even, you know. Yes. That's the beauty of it. That's the whole purpose. It is. So what would be your advice or what would you like to see healthcare professionals do better in supporting patients making and documenting their advanced care plans? But also, as you've said, it's not just about the advanced care plan, is it? So how can health professionals help patients or people have better conversations about death and Planning for it, I suppose. Well, I think in order to have a reasonable discussion about end of life planning, you need first to understand the person's life. And I think that people's lives are shaped by so many different factors. But what is important to them at the end of life? I think is their sense of identity, that they know who they are and that other people know who they are. I think that's incredibly important because the first lesson I learned in counselling was don't make assumptions. And don't give advice, don't give your opinion. So when someone is assisting you with end of life planning, it needs to be a conversation in brief about how you've lived your life and what values. have sustained you, because we all live our life by our values. But some values are directed with compassion, with kindness, and with care. And other values may more centre on status, power, control. Now I think that even on a small scale, we can't assume what people's values are. And if you actually walk the talk, if you embed your values in everything you do, they'll probably be more obvious. But some people have lived very quiet, wonderful lives, nurturing their family, providing for them. But they have left quiet loves. I think mine's been a bit of a noisy one, actually. Certainly been a busy one, that's for sure. Well, it's been a very busy life and a life full of love and learning, but also loss. And all of those things shape people. Their work shapes them, their life roles. So, what people, I think, towards the end of their life would like to feel is that they have been understood and loved or accepted. in their family and in their community. And when we think, when we use the term family, I think you'll agree with me Judith, that family can be who anyone we choose to be family. Absolutely, yes. We have chosen our son to be part of our family. He came into our family as a 16 year old boy. And he is as much our son as our daughters are our daughters. So this is a choice that we've made and he's made. And I think I've always felt that people choose their family. Not by blood, but by those ties which bind us together. It sounds, ties that bind sound like. Oh, I think it comes from a hymn I learnt as a child. Bless be the ties that bind our hearts in human love. That's well said, isn't it? It is well said. And I think one last question I will ask you before we finish up, Judith, because it's been a really beautiful conversation with you, is, you know, what advice would you give to someone who wants to start a conversation about end of life planning with their loved ones? Where do they start? Well, what I can say with real confidence now is that the first thing I do before what can be a challenging conversation is to be well prepared. And there are so many resources on the internet now. And the ones where I'm very familiar is that Palliative Care Death and Dying Research Centre have a large Knowledge Hub where there are blogs and research articles and information to help people start that conversation. Because I've always talked about my death to my kids as if it's just a matter of time. Like, not pessimistically though, optimistically though. I'm living the best life I can live, but it will come to an end. Now, it has been my children, particularly our two daughters, who've been reluctant to talk about our death. So don't think about it, Mum, you're not going to die yet. No, but I am going to die. So, I think I've been the instigator of conversations with our family. Whereas sometimes it's a family member. that needs to instigate these discussions with the person that they love or care for deeply. And I think my approach is always make sure that you live the end of your life as you would want to under whatever circumstances there are. But that you don't leave a legacy, if you can help it, of mistrust or hostility, as I've seen in so many families. And in particular, my dearest friend, who died of cancer, did not have the opportunity to reconcile with one of her dearest family members. So, what we can do by end of life planning is not only look after ourselves, but we can actually look after the people that we love through our end of life planning, so that they don't have to be burdened with their parents or best friends, they don't have to interpret their wishes, they're there. Plainly stated, what they would like, and how they would like things to happen. Now, in some ways, it's a best guess. But in other ways, if you look at what people really value in life, I've always said that what I want is a string quartet playing Mozart in my room when I am dying. And I'd like two Monets on loan from the National Gallery. On the waltz, I would like bouquets, bunches of gloriously David Austin roses everywhere. Um, I would like my family and friends and animals there, my pets. I would like books beside my bed just in case I had five more minutes for a quick read. That is so beautiful. Is that practical? Oh, and I'd need a bit of horse manure sprinkled around the floor to get that wonderful country aroma. I probably want A petting zoo sounds good. Oh Judith, I love the fact that you are finishing our interview with that mental imagery of you lying there with your David Austin roses, your string quartets and horse poo. on the ground. I just think that is absolutely beautiful. Don't forget the moneys on the wall. Of course, sorry, of course, the moneys on the wall. I do love that. But it, it really does honour the fact that, you know, how we live our lives is the legacy we leave behind. Because when we die, it's only the memories we leave. of when we've been living. And I think that that's a beautiful way to end our wonderful interview today. Oh, Judith, it's been a pleasure. 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