This Is What Dignity Looks Like: A Daughter’s Story in Support of Voluntary Assisted Dying

What happens when a loved one faces a terminal illness? How do we navigate the heart-wrenching decisions that come with it? In this episode, Barb Gearing shares her powerful story of love, loss, and the importance of choice at the end of life.

In this heartfelt episode of Don't Be Caught Dead, I sit down with Barb Gering, who shares her deeply personal journey as she navigated her mother's cancer diagnosis and the complexities of voluntary assisted dying. Barb's story is a powerful reminder of the importance of choice and dignity at the end of life. She reflects on the emotional rollercoaster of treatment, the candid conversations with her mother, and the profound impact of having the option to choose how and when to say goodbye.

Barb's experience highlights the brutal reality of cancer and the often harrowing decisions families face when a loved one is diagnosed with a terminal illness. She candidly discusses the challenges of treatment, the emotional toll it takes, and the conversations that led her mother to consider voluntary assisted dying. With compassion and clarity, Barb shares how her family approached this sensitive topic, ensuring that her mother's wishes were respected and honoured. This episode is not just about death; it's about living fully until the very end and reclaiming control over one's own narrative.

Join us as we explore the nuances of grief, the importance of open conversations about dying, and the empowerment that comes from making informed choices. Barb's story is a testament to the strength of love and the courage it takes to advocate for what is best for our loved ones, even in their final moments.

Key points from our discussion:

• The importance of open conversations about death and dying within families.
• Understanding voluntary assisted dying and the criteria involved.
• The emotional complexities of navigating a loved one's terminal illness.
• How to advocate for a loved one's wishes in the face of difficult decisions.
• The duality of grief when a loved one chooses voluntary assisted dying.

If you enjoyed this episode, please let us know! Share your thoughts, subscribe, and help us spread the word about the importance of discussing death openly.

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Transcript

0:01

She asked me, she said, when do you think you'll be ready to let me go? And I said. Mom, this isn't about me. I'm never gonna be ready to let you go. You're my mom. You're my only mom. This is about you, and I'm not going to ask you to stay an extra day if that's not what you want. And if that's not what your body needs, I want what's best for you. 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, Katherine 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 KO and Nations and recognizes 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'm speaking with Barb Gering. Barb was born in Europe and raised as an only child. She moved with her parents to Australia in the early 1980s where she has built a fulfilling life, rooted in community compassion and resilience. She is happily married and works casually at a psychology clinic in Sydney's eastern suburbs where she finds meaning in supporting mental health and wellbeing. Outside of work, Barb leads an active lifestyle and finds joy in dancing, going to the gym, volunteering, traveling, reading, listening to music, spending time with friends, and sharing good meals. Her deep sense of care and commitment became especially evident in early 2023 when her mother was diagnosed with cancer. During this time, she stepped away from work to become her mother's primary advocate and part-time carer navigating the complex and emotional landscape of treatment decisions. Although the treatments did not bring the hoped for outcomes, the experience profoundly shaped her perspective. It inspired her growing passion for education and advocacy around voluntary assisted dying, a cause. She now champions with heartfelt belief in the importance of choice and dignity at the end of life. Thank you so much for being with us today, Barb. Thank you, Catherine. Thank you for having me. Look, I think that our listeners can gather probably the conversation that we're about to have, and it involves your experience with your mother and when she was diagnosed with her cancer in early 2023. Where would you like to start telling that story, Barb? Well, I think cancer has touched so many people in the world, and it's a brutal. Brutal insidious disease. That unfortunately doesn't play by any rule books, and the journey can be such a spectrum. Some people get through it. The treatment options are available. It works well with their bodies and some people, like my mother, seemed to get the short end of the stick where no matter what, she agreed to the treatment. Unfortunately, I. Didn't seem to be very kind to her. So in my opinion, when you're faced with any challenge like that, it's not just about having the options available for treatment, but I think also having options available to you if that treatment doesn't work the way you would hope. So voluntary assisted dying was certainly something that. Our family spoke about even 20 years ago, well before it became legislation in New South Wales. But I'm just very grateful that the opportunity was available when it became clear that the treatments weren't going to work for mum. And at what point in time did that become apparent and did you start having those conversations? So when Mum first got her diagnosis, when she got the phone call from the specialist who did a bunch of tests and they found a mark on her lung, when she got off the phone, the only thing she said to my father and me were, I don't wanna suffer. And that took us down a path that made it evident that she'll be in the fight for as long as she needs to. But if we get to a point where there's. No benefit really, then that is an avenue that would absolutely be considered. Now, at the time, in early November, voluntary assisted dying had not yet become a legislation in New South Wales, so mum was prepared for the challenge and. Attended all the appointments and had the biopsy and I'm so sorry. I've gone on a tangent and I'm not even sure I'm answering the question. No, you are. It is just taking us through that process of how you went from early diagnosis and telling that story because it is a process that very few people. All have experienced. And so I think that if you, you know, do what you are doing and telling us how it actually progressed along that line is really helpful to give some people an indication of how you go through this process and how people can learn from what you've experienced. Yeah, so they found something on her lung. She had her biopsy, then she was given the big C. Diagnosis. The oncologist was incredible and he made suggestions and the suggestion that we originally went with was chemo and radiation. So it was a six, six weeks of pretty grueling treatment, chemo once a week, radiation five days a week. She ended up in hospital. On week three and four, which delayed the treatment by a few days because while she was in hospital, she couldn't have chemo, she couldn't have radiation, and she lost her hair and she didn't feel great. And she, this was a woman who. Although 74 was extremely fit, very active leader, led a healthy lifestyle, enjoyed traveling, went to the gym multiple times a week, sometimes double classes, and although her best intention was to keep active, unfortunately. Treatment can be pretty, pretty grueling and brutal. And, and so after the hospital stays, we restarted the treatment. She finished her six weeks, which had then extended to. Probably closer to seven because she spent a few days in hospital here and there, and the oncologist was quite transparent with her and said, you are going to feel bad probably for the next couple of weeks, but then things will should start to improve. And sure enough, she. Really didn't feel well after the six weeks, but instead of getting a little bit better, she actually got worse. So then she ended up in hospital again. So then they took chemo and radiation off the table, and although the cancer seemed to show some signs of not growing, it was not. The desired effect. So then they tried another treatment, immunotherapy specifically, and she had one session and that landed her in hospital again. I. More scans, some weeks of not doing any treatment just so that her body could sort of reset. And then there was a clinical trial that came up as an option, and we asked a lot of questions and Mom reluctantly said, yes. First 10 days of this clinical trial that didn't even have a name, it had a scientific coded name, but hadn't yet. Made it through all the stages to be part of the stable of permanent treatment options. She had 10 days where it seemed to work and then spent 14 days in hospital. I. She had all sorts of terrible reactions, shortness of breath, swelling, rash. It was pretty scary. And there was one particular moment where she called me in a bit of a panic and she said, I can't breathe. So even though we were visiting earlier that day. I got a phone call and she said, where are you? And I could hear that something wasn't right. She said, I can't breathe. So we ran straight back to the hospital. By the time we got into her room, there was a room full of doctors and nurses putting ECG machines, all sorts of different things. She got oxygen and she thought she was gonna die. And that's when I first. Really came face to face with the realization that this was not heading in the direction that we wanted. So she said absolutely not all along. She wanted quality of life and she didn't wanna suffer. I. So true to form. She said, if this is what the next few weeks or months look like, I'm not interested. And just to help me, Barb, so she'd, she'd had that initial block of treatment and so that is a few months worth of treatment that she's, she's done, well, six weeks, let's say up to eight weeks. And then she is then part of this clinical trial. So there's a few more weeks where she's going through that process and the reaction to it. And then that's when she has this conversation with you. There was one session of immunotherapy in between the two, but then again landed her in hospital and again. Had really bad reactions to the drugs, unfortunately. So that's when she said, I'm not, I'm not really keen to continue the oncologist and it obviously, every time that she went into hospital, I. She couldn't come out and start a new treatment immediately. So weeks passed because the body needed to reset, the body needed to heal, her symptoms needed to ease. So there was a waiting game in between, and unfortunately, each time it was full on, it was definitely full on for her. It was harrowing, even for us. But ultimately this is not about us. This is about what the patient is having to go through. And she was losing weight and she was losing energy, and it was so foreign. It was so different to what she was as a person. Before her diagnosis, she danced. She was social. She really. Took life by the proverbial and really, really made the most of, of, all of it really. So the oncologist tried one more treatment, which she agreed to, and not the best saying to say that was the nail on the coffin, but it, it really was. That was when mom absolutely said no more. Now, the last time she was in hospital was December. So November 23rd from memory was when it came into legislation in New South Wales for voluntary assisted dying. So there were obviously scans and it became evident that the tumors were growing and spreading, and that was quite confronting. There was a tumor that was actually growing out, wood, not internally. And when you can see the. Speed of the growth. It actually just adds that extra layer of, of brutality because you can see it. You know, some people are sick and you, you can't tell that they're sick. Yeah. You could tell that she was sick and I. It would've been mid-December, coming close to Christmas, and I was sitting with mom. She was sleeping a lot by then. She didn't have a lot of energy. She needed to stop. This was a lady who took pride in her house, painted her nails cooked to feed her small community, and she was obviously even struggling with the little things that that brought joy to her. So it would've been close to. Christmas when I said to her. Mom, do you want me to register you? She had already told us that, that she was very pro, voluntary, assisted dying. That was something that she wanted to have as an option, and it was just a case of when do we take that step given that she said no to further treatment. And the oncologist was very honest with her because she said all along, I don't like. Surprises, don't sugarcoat it. Give it to me straight. And the oncologist said, well, if you are refusing further treatment, the prognosis is between two months and six months. And that prognosis came in early December. So we knew that there was no getting out of this. And what I thought was. Let's get the paperwork done while she's still okay. Not okay, but still able to hold conversations. Able to, sorry, I've No, that's okay. Is. It would be great if you can take me to that point where the first conversation came about, where it was about voluntary assisted dying and and how that was initiated. Whether it was from the physician or from your mom or yourself. It'd be great to sort of talk through how it first came up in conversation. So mom and dad have spoken and have been fierce supporters of. What used to be called euthanasia for decades. That was always something that they were very, very staunch supporters of. I don't even know who spoke to us and said it became available, but I think we probably just followed the news. We knew that it was coming in at some stage, and when it passed legislation, we knew that that was an option. We were always a very open family when it came to talking about the hard things, and I realized it can be a very tricky subject. So I don't know. Our family never shied away from that. I mean, we picked out a burial plot. When mom was still alive, she was a woman who liked to be in control, and that was one small thing that she had control over. So whether it was finding that burial plot that really, I. Spoke to her and she, she thought this would be a nice resting place if I need to go. This is the place we all went together. We all chose the place together. As it turns out, there's enough room there for two burials and up to four cremation. So cremains and. So I know that's where I will be as well. One day when the time comes, when it came to the voluntary assisted dying, as soon as it came into legislation, it was something that we just knew was in our back pocket. It was just a case of what is the criteria, what does the assessment look like, what does the. Final few days, what does that look like? And I must say this is something that grief does, is it short circuits the brain and Yeah, sometimes in the middle of the conversation it just stops. But the whole process was actually very gentle and very seamless. We were surrounded by people who were very compassionate, who knew the process and just made it seem like you're not doing anything wrong. It's an option available to you. So we just always knew that that was probably going to be the path. Having known also that even though that was a choice that mum very much wanted at any point, she could back out if she changed her mind. So when we called. I called English was not her first language, and even though she spoke and understood English, she spoke with a thick accent. We didn't want there to be any ambiguity, so mom and I made the phone call together, put the phone on speaker. I explained that I was with my mom. We had received the prognosis. We registered her, and they got the ball rolling to have the assessment. I liaised with the doctor and the nurse who were assigned to us. They were absolutely incredible. Basically, the process is there are three assessments. There's an independent doctor who comes and assesses to ensure that you are of sound mind, that you understand that there's no family pressure. Obviously they don't want family dictating that decision because unfortunately that sometimes does happen. There are opportunities to ask questions. The doctor who was assigned to us was truly incredible. I have nothing but love and respect for her. The second assessment is by another independent doctor, not the same doctor, because they obviously wanna make sure that the information that is provided is real and correct and and honest. And then the third assessment is by the original doctor now at the original doctor was actually away for a short period of time and we were a little bit worried that mom might take a turn and fortunately. Mum waited for the doctor to arrive because she was the administering doctor. There are two ways that people can utilize the voluntary assisted dying service when it is time to take that final step. One of them is self-administered. There needs to be somebody there who is a trusted. Family member or trusted friend who oversees the process, who is also not a beneficiary of the will. The other option is going into hospital and having the procedure done intravenously, and mom decided on going into hospital. She didn't wanna die at home. She didn't want my father to be in the bed that they had slept in for the last. I don't know how many years, but certain, I mean, they've, they've been together for over 40, so. Mm-hmm. And those options are available to decide when and how and who is around you when that time comes. And Barb, could you just take me back to that initial phone call? Who did you ring? There's a voluntary assisted dying registration team, and they are very compassionate. Very informative. There are certain things they can't talk about because that is assuming that the assessment takes place. And once you've passed the assessments, not assessments, they're, they're interviews, but there are certain things that they're not able to disclose. But in time, you do get all of the answers that you need, whether it is the initial. Time of registration or whether it's further down the chain as you proceed through, once all of the information is collated by those doctors, they will speak to the oncologist or they will speak to the specialist or the GP or whoever needs to be in on the decision making. To ensure that it is a diagnosis, that in the case of cancer and certain other illnesses, you need to have a prognosis of six months or less. If it's a motor neuron disease, then it's a year or less. So that is the main criteria, but you need to be of sound mind. There can't be evidence of being coerced into the decision. Mm-hmm. So it's very stringent and once the assessments have taken place, that then goes to a panel of lawyers and doctors and specialists and all sorts. I'm not sure how many people are on that panel, but it's a pretty diverse panel who assesses all of the information and they have to approve it. Yeah. Okay. So I wanted mom to have that done and dusted so that if she decided that I'm not coping anymore, I don't wanna continue this, that we weren't scrambling to get all that paperwork done. Later on when she was really struggling, when she was in a lot of discomfort or a lot of pain, or if the cancer obviously spreads to certain parts of the body like the brain, or you have a stroke or you have anything that stops you from being able to consent up until that final minute moment, it's all off the table. And that was the thing that concerned Mom the most is she didn't want to be in a position where that op, where that option was no longer available to her. So it's a very fine balancing act, but once all of the paperwork was completed and the assessments were completed, I think we got approval second week of January or thereabouts. So we knew it was available. My birthday's end of January. We brought my birthday celebrations forward so that if the proverbial hit the fan that we still had an opportunity to go out for a meal together and be together as a family. So as it turns out, mum pushed through until third week of February. She was on morphine patches. She was on painkillers. She was very tired. She slept a lot. I sat with her a lot. We had very honest and open conversations. Our belief in what happens after this life wasn't. Completely aligned, but we had very respectful conversations about is she gonna send signs or are we gonna see each other again? And things like that. So we didn't shy away from the hard conversations because as far as we were concerned, I. Not talking about it doesn't mean that you can brush it under the carpet. Even the burial plot, you know, mum said Just because we're buying the burial plot, it doesn't mean I have to die. It just means that we're dotting our i's and crossing our T's so that when the time comes, that's one less thing that we have to worry about. She was a very organized woman, wasn't she? She was very, very Virgo, very organized, didn't like surprises. Little bit of a control freak, but beautifully. So, and she had very honest conversations about, am I making the right choice? Is this the easy way out? And I said to her, you know, mom, our family is not super religious. Obviously if you're super religious or you are part of a community where this is a big no-no, absolutely. This is not for everybody, but. I'll tell you the actual story that, that I had. Mom said, am I taking the easy way out? And I said, you know what, mom? If you were given a, a crystal ball and you knew that you just had to suffer for. Three more months or six more months, but that you'd come out the other end healed. Would you take it? And she said, absolutely. And I said, well mom, if there is something beyond this, I really don't think God is gonna give you a penthouse in heaven just because you're suffering longer or just because you're suffering more. Unfortunately, we don't have a crystal ball and everything is pointing to you not getting out of this unscathed. So all along you've said. You don't wanna suffer and you wanna die with dignity. And this is the only way that you can reclaim a little bit of control over something you had no control over. You had no control over the diagnosis. You had no control over the way your body reacted to the treatments. This is the only form of control where you get to decide when and how you exit. And I'm going to honor that because I promised you that I would. So I think that hopefully put her mind at ease when I explained that I really don't think you get extra brownie points for suffering. If there is something beyond where you know, if God forgives all or if God is really there to greet everybody, then God will be there to greet you as well. And obviously there are some communities who strongly believe that it's God's will and maybe it is. But I would also like to think that if it is God's will, then perhaps some treatment would've worked, or perhaps there would've been some kind of divine intervention, some kind of sign in the last moment that would have stopped her from doing it. And even so, when you utilize voluntary assisted dying, you are not guaranteed to go immediately. So it's pretty foolproof, but it's not. Completely foolproof, and they were very honest with us. The doctor was very honest and explained certain things about option A and option B, whether you self-administer or whether you have it intravenously in a hospital and what was required. So mom had a PICC line inserted into her arm because we were worried that if it came too close and mum wanted to. Utilize the service. Having the procedure for the PICC line to be inserted into her arm might've added to the distress in those final weeks. So we really preempted as much as we could. And is that like a line that that stays in there in case they're concerned about accessing the veins at a later point when, yes. Okay. Yep. Yeah, thanks for explaining that for me. No, well you explained, but you explained it very well. So Yes. So mom had a PICC line for over a month, and when the morphine patches had to be increased and the palliative care appointments were more frequent and the painkillers were every four hours, and she didn't have energy to really do anything, she asked me and she said, when do you think you'll be ready to let me go? And I said, mom, this isn't about me. I'm never gonna be ready to let you go. You're my mom. You're my only mom. This is about you, and I'm not going to ask you to stay an extra day if that's not what you want. And if that's not what your body needs, I want what's best for you. And it's very hard because obviously on a selfish level, you want your loved one to stay around for as long as possible, but watching them suffer or be. Asleep or in a coma or in any kind of position where there's no joy, you can't even have a conversation that was not something mom wanted, and there was no way I was going to guilt her into doing that. I can understand why people would beg for someone to hold on for just an extra day. I can completely appreciate that, but it really wasn't about me and I didn't want to ever look back on this time and think. She really suffered that extra day just so that I could have one more with her. So when I made that phone call, we had just had a palliative care appointment. The pain was getting worse, and I said to mom, do you want me to make the phone call? And she said yes. So I made the phone call. They rang me back very quickly and I said, mom's ready? And they said, okay, well when approximately when. Now you have the option of tomorrow or first available. You have the option of a week from now, and I thought if Mum was okay with it, I wanted to really get my head around what this all meant. As it turned out, we were on in a leap year 2023 was a leap year. And no. 2024. Hang on. Where are we? 24. 2024. Yeah. Was a leap year. I, I thought that wasn't right. Sorry. It was February. I didn't want it to be February 29. I didn't want there to be a once every four year anniversary. Okay. And I thought if we have it on a Friday, it just gives us the weekend for her to say goodbye to a few more people if that's what she wants. It gave us a week to have those last conversations that we wanted, and I said, mom, how about next Friday? It's the 1st of March, and she said, Hmm. Okay. So we knew that if anything happened, we could have always brought the date forward. We also knew that if Mom changed her mind or she wanted just a bit of extra time, there was no you, you said this day, no, we don't care that you don't wanna die yet, you've gotta come in. So we knew that that date was a tentative date, but it could change and on. The Thursday, so the day before we went into hospital, we went out for lunch. The four of us mom had an appetite. We shared a seafood paella. We shared an Aperol spritz, and there was a sense of acceptance in her face. We took some photos. There's one particular photo where I look at it frequently and it just, there's such a calm and peace on her face, and she hated photos and it just, she was ready and yeah, it's, it's, it was a beautiful memory to have on that day before, I think for someone making a decision. Like this, it would be excruciating. Maybe not. I don't know, but I would imagine it would be excruciating to know this is my last sunset, or this is the last time I'm putting my head on my pillow, or this is the last time I'm going to watch trashy tv. My mom really enjoy trashy TV and Bolton the beautiful in particular. Oh, wow. That really is up there of the, the trashy TV stakes. That's, that's a winner. We, we watched it together. We used to laugh about how they really scraped the bottom of the barrel with their storylines, and Mom said, I can't believe Eric Forrester is going to outlive me because he was desperately unwell and he was in hospital and. They were trying to save his life and sure enough, they saved his life. And she said, I can't believe I'm not gonna find out what happens. Oh, that's hilarious. For anyone who doesn't know bold and beautiful, uh, you really have to look that up because it is a treasure. It is probably the same era of days of our lives and young and restless, and it really is a, a, a soap that I, I still cannot believe is still actually running today. Yeah. So, yeah. Wow. That was amazing. Yeah. So that was, so that was one of her things is that she thought that Eric Forrester was going to outlive her. Yeah. My goodness. I love that. And as it turns out, has, has outlived her because Eric Forrester is still alive and well, not that I want him to pass, you know, he's a great character, but. Nevertheless, you know, and she was a sucker for maths. Maths, I mean, not maths. That was different. Yes. Yeah. So, you know, married at first sight that, that, that acronym would be. Yes. So, you know, she, she had a very unique sense of humor, but it was just beautifully mum in every way. On the last day, she ran her finger along something on the, oh gosh. There goes my, my grief brain again. Okay. Let's just forget that I've even started that part. I'm so sorry, Catherine. No, I, I think it, I think it's very true though that, that what you refer to is exactly that. It's grief brain. That, that adult fog that, you know, stays with you after you have had someone die. And it's ugly and messy and it comes in all shapes and forms and, and don't ever apologize for that barb, because it is what it is, you know? Yeah. Thank you. Thank you for showing me Grace. But yeah, mom, even in the final day when we met in the hospital, she was such a gym goer and her core strength, despite losing weight, despite not being active, despite not going to the gym, she was so ready and she was in such an empowered mood that one of the last things she did. Before we called the doctors in, they were very sorry. Just to backtrack, the doctors were very supportive and very understanding. They showed us to the room. It was in a wing that I don't even think had ever been used because it was a new wing of the hospital and they said, you take as much time as you need. You let us know when you are ready. So we, we talked, I helped mom get into her pajamas. I brought a blanket for her. And one of the last things she did before we called the doctors in was she got us to get our phones out and she did a sit up in the bed and her core strength was incredible. She sat up without her legs flailing all over the place. I would say most people would not be able to do a sit up without their legs flying all over the place. She sat up and I, I just said, mom, you're incredible. Now go back down slowly. And she went really slowly back and it exhausted her. But she had a sense of achievement. Yeah. She actually, she even sat up when she was in ICU in December after the last treatment. So she needed something and she just went and grabbed it and I thought, how is this woman in ICU. But doing a sit up, I mean, she didn't mean to do a sit up, but she needed to get something from the table. So my mom was fiery and walked to the beat of her own drum. But yeah, we, we took that video and it was really special and we hugged and we said, I love you. And then I said. You tell me when you are ready and she said, I'm ready. I went out, I got the doctor and the nurses in, and she hugged the, the doctor. They really built a beautiful relationship in that it was a, obviously a business relationship and yet there was nothing but humanity and just compassion. And, and she knew that she was helping my mother and, and my mom had nothing but appreciation for her. And they asked, are you aware of what will happen if you consent? And she said, yes. And then they said, and do you still wish to proceed? Now, even at that point, if Mom had said, I'm actually not ready, or, no, I've had second thoughts, or I want it later this afternoon, there would've been no judgment. They would have honored her request. She could have gone home, she could have walked out of the hospital, and that is the part that I just, I'm so grateful that there wasn't any sort of pressure on her. They were there to empower her on the choice that she made. And the way I see it when people have said, I don't know how you did it, and I don't know how someone can want to do this. I've said, look, it's not for everybody, but the way I see it, it's like having a parachute. If you're gonna throw yourself out of a plane, or, well, in this case you didn't want to throw yourself out of a plane, but if you're falling out of a plane, you have the choice to pull that rip cord and you get to decide when you pull that rip cord, and it just makes the last part a little bit more gentle and not free fall. So. It's not for everybody, but it was definitely for my mother, and we held her hand when she said that she wanted to proceed. Dad held one hand, I held the other. My husband was next to me, and honestly, it was the most dignified, gentle, beautiful transition I could have ever wished for anybody to go through. And I definitely don't have regrets advocating for my mother and honoring her wish. I think when grief strikes and I'm really sad that I don't have her earth side and I can't ring her and I can't speak to her. One of the things that genuinely keeps me strong is the knowledge that my mother regained control. Over something she had no control over and that she really did pass with dignity and in such a gentle way that it was not traumatic for us. I mean, it's always traumatic losing someone that you love, but it took that extra level of real trauma. I was there when my grandfather took his last breath. I've seen active dying when one of my friend's mothers was in the last stages. You close your eyes and you have flashbacks, and I wouldn't wish that on anybody that didn't want it, both for the person who's suffering and for the. People who are left behind. It is a good phrase that you use there in relation to the fact that active dying 'cause it is, it can be that very much that that process of being active. So I I, I do have a, have some images that are evoked when you say that, and that is a good term to use. Another term that I loved that you just used there and Barb was earth side. I think that's a beautiful way. To recall, you know, that she is no longer earth side. I like that. I haven't heard that one before. Oh yeah. I think that's really beautiful. And so it seems to me that through the process you've had. Numerous people support you along the way, and it seems that because she had that diagnosis of having the life limiting illness, that then you also got the palliative care team involved. Yeah. And can you tell me a little bit about, from your experience about how you worked in with the palliative care team and then also when the voluntary assisted dying team got involved and, and how that worked and how you navigated that from your perspective? So the palliative care team that were assigned to mum was actually part of a religious hospital, so there was a little bit of tension. Would you use the word tension? Well, they made it very clear that we would not have been able to use the voluntary assisted dying in house. In the palliative care hospice side of the organizational building and that we would have had to go down the public hospital path. We didn't have to organize any of that. Thankfully, the voluntary assisted dying team organized all of the red table of the paperwork, everything associated with that, and the. The doctor assigned to mum, my understanding was that she was quite religious, so I was extremely grateful and my mum was extremely grateful that when Mum decided to utilize the service, that there was a mutual respect, that we understood that that was not aligned with her, and yet she wished us well and she didn't stand in the way. And didn't try to impose her beliefs on us. Now, there are instances where the GP may be very religious or the specialist or the oncologist may be very religious and may decide that they don't want to sign a document or. Engage with any, any doctor related to the voluntary assisted dying team because it is not aligned with them, and we have to respect that. That's their choice. But I would like to think that most people in the medical profession when it comes to not being able to get out of this, to have the clarity and compassion to say, even though it's not for me, and I wouldn't want my family to choose it. I will respect the wishes of the person who is going through this. Some doctors may, but not everybody does. I think you described it really well when you were talking about the, the final day with your mom and it was the humanity. And I think that that's the thing that, that the life cycle of death and birth bring, regardless of what, where you sit on the religious spectrum, it is the humanity. That it brings and that, that it comes down to, if you don't mind me asking, but we shared when we weren't recording that you had been through a pilot program with Grief Line that specifically focuses on grief for the families of those who have gone through the voluntary assisted dying process. Do you mind talking a little bit about that, Barb? Because it is a whole different range of emotions, isn't it? That you experience? Absolutely. I was nominated to be part of the pilot program by one of the VAD nurses, the VAD nurses, and I'm very, very grateful that he put my name forward. And it was a very intimate group. I dunno if it was super intimate because it just works better with two facilitators and four people, or five people. Or if it was just that there weren't that many people who had signed up. But I. When it comes to losing someone to VAD, and especially because there's so many questions and sometimes a stigma attached to that choice, that it's a very different kind of grief. There's some, I guess the best way to describe it is there's a duality. There's the loss of a loved one, but there's also a sense of. They went on their terms. It was a very, very difficult decision that they made. But there was a level of regaining some kind of hold or control of the, the decision of when was the time to go. Mum probably could have waited a few more weeks or a few more months maybe, but it was evident in the way that she was that. Things were getting bad and she was desperately worried that the cancer might spread to her brain. Or, or that something would stop her from having that opportunity. So that's why it's a very fine balance of, is it time to go yet or am I still okay for one more day? One more week. One more dinner. One more catch up. So this brief group, it was a collaboration with Grief Line and Dying with Dignity. And the facilitators were incredible. We were able to connect. One of my very dear friends with somebody who I met, actually, there are two girls who I keep in regular contact with, but they've become dear friends, and there's a different layer of grief with someone who utilizes the service. And there's an understanding. I don't have to explain it. I mean, I'm always happy to explain it and I will. I'm so fiercely. Protective of my mother's choice, and I'm such a staunch advocate of having the right to choose and having this as an option. So I will talk to anybody and I will let them have their own opinion. I don't need to convert anybody, but my mother's memory is something that I will protect, and I don't need to have that conversation with these girls. They get it. Because their loved one went through cancer as well. As it turns out, one of the participants lost someone to motor neuron disease, which is differently debilitating, but I don't have to explain that extra layer. I. And I don't know how the pilot program is going, although I am still in touch with one of the facilitators. I probably should check in, but I dunno how, how frequently they do it. But ours was very much a pilot program and it was six weeks, and it was really, really very helpful at the very early stages of having just lost mom. So I'm grateful for the opportunity. And we will actually put a link in the show notes so people can actually see the workshops at Grief Line offer in relation to that and those specific ones around voluntary assisted dying. Thank you so much for your, your thoughts on that, Barb. I really appreciate it. What do you think Barb has been? The thing, has there been one catalyst or one particular moment that you think, this is why I need to tell people, this is why I wanna become an advocate. What has been the thing that you can put it down to that that motivates you now to tell your story? I've, in many aspects, x almost always been pro-choice, whether it's. Anything to do with your own body. I think there needs to be autonomy and you need to have an option, and it's certainly not something that needs to be forced down anybody's throat, but I think we've come a long way in certain areas, and this is just one of the ways, I mean, I thought it was absolutely incredible that New South Wales was the last state to bring in the legislation. Or at least that's my understanding. I'm really surprised that this wasn't made legal earlier, but I'm just fierce. I'm a fierce advocate for pro-choice and having that as option eight, even if it's the eighth in the queue. Just having that option there I think is really important because you know, people like their food. In a varied spectrum of of flavors, why is this not something that someone can choose to incorporate? Especially if you know that the end is going to be really hard on the patient and on the family? Why not offer it? It's not for everybody. Yeah, that's okay. And what would you say to someone who's listening? What would you sort of be the, the takeaway advice or the takeaway piece of information you'd like them to remember from your story and, and you telling your story about your mom? I think ultimately having the opportunity to decide the final moments. And I mean, some people prepay their funeral because they want, I mean, some people do it for different reasons and they may not wanna put the burden on the family, but I think this also potentially takes the burden off the family of when do we turn off the life support or when do we. Yeah, sorry. It's, it's done that thing again. Oh, I, I think that, I think it's probably, you know, a, a good way to way to say it, that sometimes that may be the difference of the decision that needs to be made. Yeah. I, I don't think anyone is getting out of this life unscathed, so. Doing it in a way that aligns with your wishes, I think if possible, obviously, is just really important. Not everyone gets the choice, but if you've got the choice. I think it's important. So it goes without saying that this choice is very highly personal and some people may want to talk and get advice from lots of different people, and some people would, you know, want to keep it quite private because there is still a stigma attached to making this decision and they consider it to be maybe somewhat hand in hand with suicide. Anything like that, which it absolutely isn't, but Mom was quite private when it came to disclosing the choice and the timeline with her friends. She was very forthcoming with the conversations that we had at home with my father and you know, just the nuclear family, but. She said that once it had happened, she was a little bit worried about the narrative. And I said to my mom at the funeral, I'm going to tell everybody at the same time in the same words, you know, what your choice was, why it was your choice. And one of the things that I said, because not everybody can quite grasp why someone would come up with this decision, and the metaphor that I used at the funeral was. Mom absolutely came to the party. She just left before the night, got really messy. And there was a resounding gasp, light bulb. Ah.'cause almost everybody recognizes the metaphor of going to a party, enjoying the night, and sometimes overstaying. And then you look around and there's vomit in the corner, or there are people doing things they shouldn't be doing. Or you're left with the mess of cleaning up. So if I can. Give people a little bit of an insight of what that looked like. Not mainly for mom, but also for her loved ones. For the people who were left behind is she came to the party in every sense of the word. She just left before the night got really messy. So I think that that's a really beautiful way to end our conversation, and it does come down to. To choice. Thank you so much for sharing the story about your mom and what you've been through. So. Thank you so much, Barb. Thank you. Thank you, Catherine. We hope you enjoyed today's episode of Don't Be Caught Dead, brought to you by Critical Info. If you liked the episode, learnt something new, or were touched by a story you heard, we'd love for you to let us know. Send us an email, even tell your friends, subscribe so you don't miss out on new episodes. If you can spare a few moments, please rate and review us as it helps other people to find the show. Are you dying to know more? Stay up to date with. 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