#03 Kellie Curtain - Difficult Conversations and Good Goodbyes - FULL TRANSCRIPT

 

Ash De Neef: Hello, and welcome to the Aged Care Enrichment or ACE Podcast brought to you by SilVR Adventures. Every fortnight, we invite aged care industry experts, thought leaders, and passionate individuals to share their knowledge and experience with us as we examine ways to improve the quality of care and the quality of life for seniors. I am your host, Ash De Neef, and in today's episode, we are talking to Kellie Curtain. Kellie is a journalist and author who is outspoken about the end of life and the necessity of having difficult conversations about dying. Following the death of her mum in 2009, Kellie wrote the book, What Will I Wear to Your Funeral?, Which takes an honest look at the last month of her mum's life and the important conversations they were having towards the end. Kellie is also an advocate for Advance Care Planning Week and the host of the Upfront About Breast Cancer podcast. This was a surprisingly fun and honest conversation, and Kellie is really unafraid to delve into uncomfortable territory. So, I hope you enjoy this conversation with Kellie Curtain.

Hey, sorry, it is me again. Just a quick note to say that you will hear a little bit of noise in the line in this interview, but it really does not detract from the value and importance of what Kellie is saying. Anyway, enjoy.

Kellie, thank you so much for joining us today.

Kellie Curtain: Pleasure to be here.

Ash: Can we start with you just giving us a little bit of your backstory?

Kellie: My life was fairly ordinary and normal and tracking as it usually would until I was told that my mother had breast cancer and that she was going to die so, that flipped everything on its head for us, me personally, my immediate family. It was a massive shock because even though at some time in your life, everyone is going to die. When actually it is staring at you, it is something very, very hard to deal with.

Ash: Yeah. You wrote your book, What Will I Wear to Your Funeral? About the experience of your mum passing away, right? Can you talk a bit about the book first?

Kellie: So, you are right, it is called, What Will I Wear to Your Funeral? And that is a really confronting question, but it is also one of the many, many questions you have to ask yourself when someone you love dies. And the conversations that I had with my mother before her death were so important to me because I did not want to be left having to guess what she would want after she died. So, the book is very much about lots of cups of tea, lots of glasses of red wine, lots of shades of bright lipstick, and the beautiful, beautiful conversations. Some of them were really tough, some of them were really funny, but then the important conversations that I knew I had to have with her whilst I still could, and I am just... Every day I am grateful that I did because I think it made the most profound difference, not only to her final week but also as part of our grieving process moving forward.

Ash: And the book is very honest with the conversations you were having and also with your feelings about those conversations. Some of my favourite parts of it are where you are very honestly acknowledging how selfish you are being. How has the experience of being so vulnerable with the book?

Kellie: Well, I knew that if I was going to write a memoir, and it is a memoir, although it is essentially it could be anybody's story. I would like to think of it very much as a love story. But when you are writing a memoir, you have to commit to being authentic because otherwise, the holes appear all over the place. So I knew that if I was going to tell the story, it had to be warts and all, and that also included being honest because originally the book started just as a record, a journal for me and for my children so that we would remember those really special times that we had with my mum, not just in the final weeks, but throughout my whole life. And, also I hoped that it would bring a few laughs to people and also make others feel less alone when they are going through a similar journey, and everybody's experience of losing a loved one is different, it is always different, so it was never going to be a template for "This is how you should do it" or "This is what I suggest." It is just what we did. And, I think it just kept it real because even in this baddest of times, in the worst of times, the world continues to turn and children, still need feeding and you still have to have a shower, and there is still school runs to be made, and that is part of the beauty of life, and also a real reminder that nothing really stops. Everything has to keep going and not even cancer and not even death will make time standstill.

Ash: And you have said that you are passionate about the very unpopular topic of conversations about death. Can you talk about that a bit?

Kellie: Yeah, see, it is a real crowd-stopper is not it, saying, "Hey, let us talk about dying. Let us talk about death." I think the thing is that largely, people do not want to talk about dying because they find it... It is fear. People are fearful of dying, and they are fearful of dying I think because death is largely unknown. We do not know what happens after death. It also makes you feel very vulnerable, and people do not like to feel vulnerable or out of control, but what I have found, and it was not because I thought, "Look, I am going to have all these conversations with mum, and this is going to make it all better." It happened, it is only with hindsight and having lost my father when I was much younger at twenty-one. He died suddenly. So, there were no final conversations. There were no goodbyes. It was quick, so there was no suffering. He died of a heart attack. And, because my mother was still around, she was left to make all the decisions. But as your final parent dies, you know that all those decisions are going to be left to you. And I did not want to muck it up. I did not want to have to guess. And my mother was my best friend. We were extremely close. So, if anybody was supposed to know, it should have been me or my brother. But, as we got closer to what was going to be inevitably her death, I became profoundly aware and concerned that I was going to muck it up and look, you could certainly say, "Well, there is no wrong or right." But is a burden that those left behind are going to have to carry. And so, when I was having those conversations with mum and I had say, "When do you want to stop the treatment?" I did not want to be left with that decision. I did not want to be the one to say, "Stop having that medication now" which would have expedited the process of her actual death. I did not want to have to choose her casket because that is the other thing, when decisions are left with someone other than the person concerned, as a way of expressing love or gratitude or the importance of a family member, you feel like you have got to spend money. And one of the things mum said to me was, "Do not go and spend money on a casket. It is going up in smoke. That is ridiculous." But frankly, we did not want to look tight. We were like, "Well, [inaudible] wheel you out in a cardboard box, we are going to look undignified." Well, and it ended up looking beautiful because we decorated it with the kids' handprints then it was absolutely magnificent, and it was actually quite therapeutic as well. But all those decisions that if you do not make them, they are going to leave to someone else. For some people, it is important that they have that choice. For others, they think, "Well, I do not care. I will be dead." But maybe spare of bought for the person that is going to be left behind to [inaudible] about those decisions and desperately wanting to make the right ones. But if it has not been articulated, then you are only ever just guessing, and there have been extraordinary research to show that those who have the conversation with their loved one, those left behind, are far less likely to suffer anxiety or depression several months on.

Ash: Right. So, you can see how it contributes to an increased quality of life to be able to have those conversations earlier, right?

Kellie: Improvement in the quality of life for everyone. Because for the person concerned, whether they are terminally ill or have a chronic disease or even die suddenly if they have had the conversation, the research shows that they feel like they are no longer a burden. There is also evidence to suggest that those who do make their wishes known feel relieved because they do not have to worry about care that they do not wish to have. They get to make the choice as to what is there, what they perceive as a good quality of life. And in many cases, it reduces dramatically the effect of an unwanted intervention, the number of people who do not end up in ICU because they have articulated their wishes not to be resuscitated, not to be on life support. That all as a result of having had a conversation with a loved one, a carer, or a medical professional well in advance of that happening.

Kellie: Let us face it. No one really knows when it is going to happen. But if you have had it earlier, then it is done. And no one says it is set in stone. I remember I think my mother had said to me, in my twenty, there was that Bette Midler song from Beaches, Wing Beneath My Wings, and it used to come on regularly on the radio. She would say, "Oh, make sure you play that at my funeral." Thirty-odd years later, I am sitting beside her, and I am, like, "So, that Bette Midler song, Wind Beneath My Wings," she goes, "Oh. Oh, God, no. No, no, no." "You always told me that that is exactly what you would like." She goes, "That was thirty years ago. Not now." [inaudible] prerogative to change one's mind all the way.

Ash: Yeah. One of the things that I really like about your book is that there are a lot of those conversations in the book, but you do not shy away from how difficult and emotional they can be. I think it is one thing for us to sit here and say, "You should have the conversations," but knowing that they are difficult and knowing that there will be emotional, do you have any thoughts about how to enter into those conversations?

Kellie: Everyone is different, and what is important to one family is not important to another. There is no template. In the book, I mentioned how, at one point, I just found it incredibly unfair. Yet my mother was seventy and she had grown children and grandchildren, so there was a lot to be thankful for. When we were sitting in the chemo ward and there would be younger people who had a whole life ahead of them and I would feel compassion, horrible. But if I was brutally honest with myself, which I was in the book, it was like, "Yeah, but she is my mother, and I still want her around." I am not about to trade her place for somebody else's. And, yes, possibly not my proudest moment, but it was just that is what it was. And I think honesty, honesty is the only way to have those sorts of conversations, even if it is to declare straight up, "I feel awkward about having this conversation. This hurts. I am scared." Honesty. Quite often, someone who is, well, when we were talking about someone who is terminally ill, they do not want to talk about it with a loved one because they do not want to upset. I think it is a very individual process. Some people have a warped sense of humour, like my family, and we argue and fight, well, with each other about who is going in the cheaper box. It can all be done with a bit of humour because, like most things in life, the big milestone, we plan for. We planned for births, we plan for marriages, we planned for twenty-first. Big milestones in our life. We never think twice about putting great effort to make sure that it goes as planned. Yet when it comes to the bookend of life, that you are born and then you die, and no one is an exception, in this case, that is one thing that we do not tend to plan for. Again, it is like any other milestone. Some people will plan it down to what flowers they would like at their service, what sort of service, who should sit where what colours to wear. And others will just do the bare bones. I think that more than anything is the bare bones, and the bare bones have to be what is important to you. From an advanced care planning point of view, for which I am an ambassador, that is very much about encouraging people to, well, ideally have it recorded. But otherwise have a conversation that articulates what you would like done in your medical care if you are not in a position to communicate it, for whatever reason. And I think that, no, is it going to make a huge difference if the flowers at your funeral are not what you might have pitched? No. But sometimes the surprising little things will give you comfort. One of the questions I asked my mother was, "How do I look after your orchid?" She would have that orchid for twenty years, and I knew it was going into my care, and I did not want to be the one to kill it. And I do not...

Ash: Yeah.

Kellie: Well, I did not have a green thumb. But we have just recently marked my mother's tenth anniversary, and that orchid looks amazing.

Ash: It is still going, wow.

Kellie: It is still going, and it brings me such joy. So, quite often, it is the little thing. It is the little things that will bring loved ones to comfort many, many years on because of what might be a seemingly insignificant conversation. It is about just starting the conversation, and you do not have to have it all in one go. It does not have to be incredibly detailed. It is about breaking that ice. It is like anything, good advertising. Just do it. Just do it. You do not have to climb the mountain in one session. You just have to have that first conversation. Ask one question over the period of a couple of weeks, and that could be whether you are the carer or the loved one. It does not have to be as full-on, and the word 'dying' does not always have to come up. It is about actually recording the memories, as well as your plan, your plans for a good policy of life, no matter how long that life is lit.

Ash: Yeah. When you are talking about the orchid, you remind me of another part of the book where you really want to learn to sew from your mom. You really wanted to get these Santa sacks down. You wanted to have the techniques so you could keep it going and it eventually fell away. And that feels like a very honest thing for it to be something that feels like a nice idea, but in reality, how possible is it? From what you are saying, it sounds like the tone of it is just to be very honest about what you care about.

Kellie: Well, it is. And it had a certain romance to it. Mum had always sewed [inaudible] for the children and she was a florist by trade, but when she retired and basically became an adoring Nana, she had sewed the children nightdresses and pyjamas and twirling skirts and headbands. And it was almost like I felt like I needed to carry on the traditions. I was not really that interested. I just thought I should. And so, we tried it and like anything when you are really not all that passionate about it, it sort of goes by the wayside really quickly. And I was sad there for a moment. And then I realized she had actually been teaching me so much more. I had so many more lessons from her than sewing.

Ash: There is quite a bit of, because you had young children at the time, you had three daughters and a son just arrived during the process of your mum's journey, and there were some conversations that needed to be had with your young daughters. Because you have this passion for talking about death, how do you approach that with your kids who I assume are now teenagers?

Kellie: Yes, they are. They are teenagers. I think it is worth noting that I did not have this passion beforehand. It was not like mum's terminal illness and I thought, "Oh, great. Great test case here." It the benefit of hindsight, which of course like so many lessons in life through the benefit of the rear-view mirror, the test is when you lose someone or about to lose someone you love, there is no happy ending here. It is incredibly sad that there is no avoiding. I did consult professionals because I was also very aware that they were young, that my mum was part of their everyday life. She lived at the end of my street, so she was extremely involved, and I did not want to scar them emotionally. I wanted to handle it in the correct way. And the advice that came back was, "You need to be honest and you need to play it by ear. You need to read the signs of your children." And it was remarkable how they all handled it all very differently. And they are all very close in age. But my eldest at the time was so stoic and then completely lost it. And in the book, I remember writing that as a way of just trying to grasp at straws to try and console her, I offered her a Coke. And she screamed at me that she did not want a Coke. Nothing was going to make her feel better ever again. And I was really worried, I was worried. And my youngest child was under one, but the other three, the three girls, we had decided to all go and I would take them separately, they would buy a bunch of flowers for Nana and a small gift, and they would take their own cards and they would have time with her alone. And that is what we did. And my third child, who was only three at the time, just wanted to sit on her Nana's bed and ate lollies, which was probably to be expected. And one of my other daughters actually found it quite scary and did not want to be left alone with her. But they all chose beautiful cards, and ironically, McKenzie, who is, I think, six or seven at the time, when I went to get her, her card, she chose not a "get well", not a "thank you", but a goodbye card. So, there was an acute awareness of it, but there are some bits that you have got to laugh too. When they are on their way to swimming lessons and one child's said to the other and the back of the car, "If I do not cry when Nana dies, can you bite me? Because I want to be able to cry." So out of the mouths of babes. And even when another's interpretation, we are all sitting on the bed one morning together, and the end we knew was going to be within the next week or two, and one of the children snuggled next to me and said, "What happens when you die?" And before I could even start, child number two jumps in and says, "I know. I know what happens when you die. They dig a hole in the ground and they put you in like a guitar case, and then they put you in the ground and they put a sign on top that says, 'Nana is in here.'" And for someone that has no idea what happens, she was a fire off the mark, except that mum was created. But that was her perception. So, there is no right, there is no wrong. And so much of people's fear, whether it be an adult or a child, is just being able to listen and acknowledge that fear. And then suddenly it is no longer a fear.

Ash: Absolutely. Now, you mentioned before Advanced Care Planning, and I understand you are associated with that organization. Can you talk about that a bit?

Kellie: Yeah. So I am an ambassador for Advanced Care Planning Week, which is a federal government initiative that encourages people who fill out a document or have a conversation with a loved one that indicates their medical choices in the event that they cannot make them themselves. And the statistics show us that eighty-five percent of Australians will die of a chronic illness, not suddenly. So that is a fairly large proportion of us that have ample time to make those wishes clear. Unfortunately, beyond the vast majority will never do that.

Ash: Yeah.

Kellie: And that, as I mentioned before, ends up with unnecessary intervention and decisions that they have to be made under pressure, and decisions like that are far worse made under pressure. Conversations about dying are far worse under pressure and when it is imminent, which is why I think conversations, when you are well and able, is the way forward.

Ash: Absolutely. Now, Kellie, you are also the host of the Upfront About Breast Cancer Podcast. This was something you helped develop, you said. Can you tell us the story of that one?

Kellie: So, my mother did die of breast cancer, although the book is not about breast cancer. So, I began work with Breast Cancer Network Australia, which provides free support for Australians with breast cancer. They do not do any research. So, they are there to inform and connect those who have just been diagnosed, those who are undergoing treatment, and post-treatment as well. It is a massive network and not surprising given that twenty-thousand Australians are diagnosed every year with the disease. So Upfront About Breast Cancer, the podcast, was designed to offer a place to listen to real people, real stories, and to answer the questions that you are either too afraid to ask in a medical setting or just through the sheer gravity or busyness of life, you forget to ask. And there is nothing like hearing somebody else's story and finding that it is similar to yours, and you feel less alone. So, it is very much based on real-life experiences. And it also incorporates a medical professional in just about all of the podcast that gives advice and demystifies a lot of the technical jargon too, to help you navigate the health system or the path that someone with breast cancer is on. And there are so many paths to be on too.

Ash: Kellie, you mentioned the episode with Jules Domigan. It was a great one. Can you talk about that episode a bit?

Kellie: Yeah, so again, of all the episodes... And they are all very powerful, all the stories are really powerful. But again, end-of-life is a topic that is tough, and it is like the elephant in the room, no one wants to go there. And whilst breast cancer survival rates are amazing, we still lose more than three-thousand women every year to the disease. So, it is real, it is an issue. End-of-life conversations are extremely important. Now, Jules was thirty-four when she was diagnosed with breast cancer, she was pregnant at the time. And she had triple-negative breast cancer, which is predominant in women under forty, and the prognosis is poor. So, once she was diagnosed, it was unlikely to have a happy ending, but that did not stop her from giving everything to it. So, the podcast that we did with Jules was about end-of-life, because her treatment had stopped, and she was in palliative care. And that was two years on from her diagnosis. And what was really powerful about that conversation with Jules was that she wanted people to know that to talk about dying, to talk about palliative care, to be in palliative care did not mean you were giving up hope, because you should never give up hope. But she also felt that it was almost foolish not to make sure that her choices had been heard and were recorded, so that in the event that she did not get a miracle, that everyone could carry out her wishes. And her daughter was eighteen months when Jules died, and she actually died a week after the podcast.

Ash: Wow.

Kellie: But she was prepared. Ready? No, but prepared, yes. And that gave her enormous comfort. And the big takeaway I took from Jules, because she was so young, and it is not a happy ending. It was just cruel, it was tragic. But what she wanted her family and friends to know, and what she wanted to achieve by doing that podcast was to say to others, "You know what? Talking about death and preparing for it will not make it happen any quicker." And that had a really profound effect on me too. And it is the one thing that I would say to anyone talking about it, though fearful, though uncomfortable, though it makes you feel vulnerable. It does not make it happen one second earlier than it is going to.

Ash: Yeah, it is funny how simple it sounds when you say it out loud, but it is just this thing about talking about death that people think you invoke the name death, and then it comes sooner. But you are right, it has no bearing on when you go.

Kellie: Right.

Ash: The way that you guys talk in that podcast is so blunt and direct. It is nice to listen to when I think you said something like, "You are at the pointing end now, are not you Jules?" "Yes, I am definitely at the pointy end." I guess there is many different ways to have those conversations, but it is nice to imagine that you can have that conversation with a slice of humour as well. It does not just have to be doom and gloom.

Kellie: After that podcast, it did go down very, very quickly, as sometimes happens. Even when someone does have a terminal illness, it can end quite dramatically, and it did. And she poetically, but equally, as sadly died on her thirty-sixth birthday. But in the week before, she started up a dance challenge from her palliative care bed to all her friends to do all these goofy dances. And she was pure joy, she really was, she was pure joy. But yeah, boy, was she blunt.

Ash: Yeah, you talked about some of the ideas of preparing instead of being ready. Can you share some of the preparations that either Jules or your mom made before passing away?

Kellie: Well, I think it is all dependent on where you are in your life. As a young woman with a baby that she was going to leave behind. Jules made sure she had a birthday card for every one of Rory's birthdays until she was eighteen.

Ash: Wow.

Kellie: She had entrusted a circle of women with whose qualities she admired and basically made them fairy godmothers for a specific character, for truth, for honesty, and they all got given a charm bracelet and made boxes to make sure that while she is not here, she will still be part of Rory's life. She recorded videos. For my mother, it was completely different. Her children were grown and a lot of moms [inaudible] were more the affairs in order. [inaudible] put a lot of stuff into boxes. She said what she wanted to be thrown out. There was still a lot of, no one ever gets tidied up as they should have been, but something is better than nothing, and all the big decisions for us were made. It is very different, if there is still one remaining parent, then they carry on whether it be in the family home. So, everybody's circumstances are different. For me, and for mom, it was what do you want to wear when you die? She was specific that she did not want a viewing. That was it. She did not want anyone going to the crematorium. She was also adamant that she did not want visitors in the last remaining weeks of her life. She wanted to keep it close. Other people want to be able to say goodbye. I think that is the one upside of a terminal illness is that you can somehow find the good in goodbye, and that is a real gift that you do not really appreciate until later, and you understand that being able to say goodbye to someone, whether it is literally saying goodbye or whether knowing that it is likely to be one of the last times you will connect, whether it is just through holding someone's hand or dropping them a note, it really goes a very long way to the end of someone's life. Being able to say, to know in your heart, that this is possibly the last time versus tragic accident or unforeseen circumstances where there is no preparation at all. So I think I would say to anybody, as hard as it can be preparing, even in small ways, in your way, in your own personal way, will serve you well.

Ash: Yeah, Kellie, we are just about out of time. We have touched a lot of topics here. Is there anything final you want to share with people maybe who are looking at diagnosis or even just anybody thinking about death? Anything you want to share?

Kellie: I think it really is about looking after the people you love, looking after yourself, making your choices known, and having those important conversations. It is a choice, and I do not think you will ever regret having had that conversation. And it is never too late the habit until it is too late. So, it is a challenge. I think that there is no happy ending. There really is not, but there is good to be found in saying goodbye and preparing.

Ash: Yeah. Wow. Thank you so much for your time today, Kellie, that was fantastic.

Kellie: It is a pleasure.

Ash: Well, I hope you enjoyed this episode of the Aged Care Enrichment podcast brought to you by SilVR Adventures. If you would like to find out more, you can visit our website at www.silvradventures.com.au. That is S-I-L-V-R Adventures. Of course, do not forget to subscribe wherever you get your podcasts to make sure you do not miss out on the next one. My name is Ash de Neef. Thanks so much for listening and I will see you next time.