Tender Conversations | Live with Dr Kathryn Mannix | Club Sandwich
Most of us have a conversation we keep avoiding – about ageing, about more help at home, about dying. In this week's episode, recorded live in Sydney, palliative care physician Dr Kathryn Mannix shows us how to have that tender conversation.
Recorded live at our Stay For Supper event, Sarah Macdonald sits down with Dr Kathryn Mannix — global campaigner, author of With the End in Mind and Listen, and palliative care physician — to discuss why these are tender conversations, not difficult ones, and how to start the ones we keep putting off with our ageing parents.
JOIN THE CLUB: Visit https://clubsandwich.community to join the conversation.
SEND US YOUR QUESTION: hello@clubsandwich.community
This Week's Hack: Take the armour off, hand the authority back to your parent ("Mum, can you help me think this through?"), and then be quiet — for longer than feels comfortable.
Send this to: anyone bracing for a hard conversation with a parent, or a sibling who isn't quite there yet.
A moment that stays: Kathryn's "travel" metaphor for the end of life — when a dying parent talks about catching a bus or finding their ticket, go with them.
Meet the regular Clubbers:
Melissa Reader — CEO of Vera and expert on Australia's ageing crisis.
Jo Lamble — Clinical psychologist specialising in guilt and family dynamics.
Dr Ginni Mansberg — GP and women's health advocate.
Dr Stephanie Ward — Geriatrician helping you understand the ageing brain.
Kerry Milligan — Gogglebox star bringing humour and honesty.
Today's guest: Dr Kathryn Mannix: author of With the End in Mind and Listen: How to Find the Words for Tender Conversations. Free animated short, 'A Beginner's Guide to Dying', available at https://kathrynmannix.com.
Content note: this episode discusses ageing, serious illness, dying and grief. If you'd like to talk to someone — Lifeline 13 11 14; Griefline 1300 845 745; Carer Gateway 1800 422 737.
Find Put The Kettle On – Vera's free guide to the five questions worth asking your mum or dad – at https://putthekettleon.com.au
With huge thanks to Altina Drinks for generously sponsoring our Stay For Supper evening. Visit https://altinadrinks.com.
This episode was supported by Australian Unity Home Health and Care. Visit https://australianunity.com.au/clubsandwich.
This episode was supported by NSW Trustee and Guardian — wills, power of attorney and enduring guardianship, sorted properly, so the people you love aren't left guessing. Search NSW Trustee and Guardian, or call 1300 10 20 30.
Vera is your candid companion as you care for an ageing parent. Have a look at https://vera.guide.
Credits:
Sarah Macdonald — Host + Executive Producer
Melissa Reader — Commissioning Editor, Executive Producer + Clubber
Justin McArthur – Executive Producer.
Audio + video edits by P. Zinner Podcasts (https://pzinner.com.au)
Thanks and kudos to Sean Wayland for our theme music Club Sandwich — hear more at https://seanwayland.com
See omnystudio.com/listener for privacy information.
Transcript
I spent five years being trained how to stop people from dying. Nobody talked to me about what happens if you can't stop people from dying. And you know, we jointly have the worst mortality rate in the world. 100% in Australia, 100% in the UK, and yet we're not talking about it.
Club Sandwich is brought to you by Australian Unity Home Health and Care, helping Australian families keep their parents well, independent and at home for longer. Visit australianunity.com auclubsandwich. Club Sandwich is brought to you by NSW Trustee and Guardian, Helping families across New South Wales make a will, plan ahead and protect the people they love.
Search New South Wales Trustee and Guardian or call 1300-10-2030. Hello, welcome to Club Sandwich.
Now, this is the podcast for you. If you have recently learned how to juggle, and I don't mean with juggling balls, sometimes it feels like you're juggling chainsaws when you're in the sandwich generation. My name is Sarah McDonald and today we have a very special episode for you. This was recorded at a live event.
Yes, Some of the Sandwich Generation Got
out for it features Dr. Catherine Mannix, who has just been in Australia and it was recorded on Gadigal Land. We'd like to acknowledge the traditional owners.
Now, Catherine is amazing.
She is a global campaigner for better care and conversations. She was a doctor who worked in cancer. She then studied cognitive behavioural therapy. She retired as a doctor to become an expert and an advocate in conversations around death and and dying and treatment. Her books include Tender Conversations and With the End In Mind. Now, in this event and in this podcast, she explains why doctors are not always great at recognising death and communicating about dying. And she talks about difficult conversations with ageing parents, with hospitals and around death. She also talks about how we often have an inner knowing when the end is nigh. This is a great accompanying podcast episode to Put the Kettle on and that was where we demonstrated the questions to ask your aging parents. You can grab that free resource guide with the questions@putthecettle on.com AU clubbers have some great questions at the end of this as well, so keep listening. And here's Catherine.
Thanks, Melissa. So, Catherine, we have done this Put the Kettle on guide and we did a podcast around this as well and we made a mistake in it. We called them difficult conversations. I know. And you say they should be called something else. So what do you call conversations about life, aging, living and dying?
Hi, everyone. So I call these tender conversations because I think that the language that we use Influences the attitude that we take into the conversation. And you see courses advertised, don't you, for challenging conversations or difficult conversations?
And I feel like you're putting your
armor on, you're getting ready for it to be difficult. But the reason these conversations are difficult is because we know that it won't just be the words, it's going to be the emotions in the room as well. And that's what we are a little bit anxious about, I think. And we feel like we need to be in charge of it and in control of it and in control of ourselves. And somehow, if we're prepared to take our armor off and just go in with our tenderness. Which means I am a bit anxious because I'm vulnerable here, but I'm prepared to be vulnerable because this really matters. It kind of changes the dynamic. I practiced it on a surgeon.
Say that again.
I practiced tender conversations as a concept on a surgeon. Right.
So I worked in the hospital that
had the esophagogastric cancer unit. And our surgeons, they have the best results in Europe. Am I allowed to just be a little bit proud? There may be better ones in Australia,
I don't know, but they were the
best ones in Europe. They were all men. They knew they were the best ones in Europe, and we knew that they knew that they were the best ones in Europe.
Right?
So one day, one of my colleagues is standing with his hand on the doorknob to go into a patient's room.
And this is a patient that he and I have known for quite a long time, because preoperatively, patients coming in to be cured of esophageal cancer are going to have massive surgery. They meet the palliative care team now. So this is a plug for palliative care also. I'm not ashamed.
Who are the palliative care people? Right? So they meet the palliative care team because they're going to have their chests
open, they're going to have bits of the insides taken out, they're going to
have bits joined onto each other that anatomically aren't supposed to be joined onto each other.
So when they wake up, their cancer might be cured, but they feel sick, they've got pain, they feel horrible, and they've still got to go on and have chemotherapy or radiotherapy or both. So the palliative care team, we're good at symptoms, so we meet them, we work with them really early on to help them to be cured. You don't have to die just because you've met the palliative care team. So that's the background. I'd met this guy, I can't remember how long, three, four, five years previously. And my colleague had been following up and he'd been well, and then recently he'd been less well, and now he was back in hospital and he had new cancer spread from the old site. And he was going to tell him that he was no longer going to be able to be saved from his cancer.
He's got his hand on the doorknob
and he said to me as I'm walking down his ward, I hate these difficult conversations. And I could see him, and I said, I wonder what would happen if you thought about how glad he's going
to be that it's you, because you've
known him so long, that you've worked so hard, that you are as invested in him being cured almost as he and his wife are. And what would happen if you just realized that this is not a difficult conversation, it's a tender conversation? And he looked at me like a man who knows he's the best in Europe looks at a palliative care girl
who's just said tender out loud,
went into the room. Anyway, about three weeks later, he came to find me in my office. Palliative care people.
Do the esophagogastric surgeons even know where our offices are? No. Okay.
And he said, I want a word with you. He said, I have to tell you, that's the first time I've ever had
tears out of my own eyes in
a conversation with a patient. It also went the best. It's ever, ever gone. And I suppose I should say thank you. And I thought, okay, yeah, that was a really neat experiment. If it works on a surgeon, it
will work for anyone.
And I've used it ever since.
Okay, so get rid of difficult. These are tender conversations. I want to come back to hospitals because hospitals can be hell for people in the sandwich generation and for people who are being cared for. They're confusing, they're bewildering and they're awful. And often the surgeons are not the best at having these tender conversations. But let's just talk about. I think for any conversation, whether it's about ageing, whether it's about how do you feel about getting more help around the home, how do you feel about not driving anymore, all of the tricky conversations we need to have. I think a lot of the big issues for the Samaj's generation is that we do go in, perhaps with armour on, but we also go in. We're really time pressed we're really stressed. We need to be quick. We've got a mission on our brain and I think sometimes that's the hardest thing of all, that we're just a little bit too rushed. So let's start right at the beginning of a conversation. If we've taken the armor off, what have we put on?
That's such a great question. So when you think about these conversations, and so I'm thinking about families like my family. I have parents in their 90s. I have a grandbaby who's four and a half weeks old. Thank you.
Congratulations. Yeah.
And a four year old whose birthday I'm missing. Oh, my God.
Bad granny.
But here's the thing. You are back in the sandwich generation. By having a grandchild, you put yourself back there.
Absolutely right. It's all their fault.
Welcome back.
Thank you.
So here we are thinking about those conversations and I'm trying to think about
other people, but actually this is something of my own as well. And you're right. We go in thinking, I know what will fix this. So I need to have this conversation with this person so that they will decide this thing that I've already decided.
Yeah.
And this person taught you to use a spoon. You know, they very often are not having it. And so although we're time pressed, I think the more we push, the more resistance we generate, the longer it takes, the more reluctant, more resentful people are. I had another conversation about us persuading dad to stop driving this week. It's probably nine years since he stopped driving and we're still talking about it. And actually, if anybody hasn't heard the podcast episode about that and the bereavement that that is, it's really worth listening to.
So one of the things I think
we need to do is to put on. What do we put on that tenderness and that curiosity about this person who's lived a lot of years and is very wise, might not be always so quick and sharp as they were, but I wonder what solutions they're already pondering for how much longer they think it would be wise to carry on driving. What might be the solutions for the extra care needs that they have? Could they help us to generate a list of possibilities to think about instead of us going in with our one fix? So that's curiosity, it's tenderness, it's humility, and it's patience because they haven't got time to go through the list. But if we don't go through the list, we'll end up going through the list anyway. Just Resentfully instead. It's hard, isn't it?
It's confronting too, I think, for us, isn't it? Because as you said, we, especially with ageing parents, they taught us to use a spoon. They changed our nappies. We might be changing theirs now or thinking about that in our future. But we've also got to shift out of that role. We've got to change that role, but still be respectful of that person. And while we want to fix the situation, we have to be aware of. Yes, the history that's gone before, I suppose. So as you said, we put on that tenderness, we put on that humility. What's a great opening line so you don't get that pushback and you're stepping over the mark here, girlie.
Well, I wonder whether we would do better by retaining the parental authority gap instead of coming in and parenting our parents or our grandparents or elder relatives to go in with. You know, Mum, I've got something on my mind that's really worrying me. I wonder whether you got time to talk about it with me a bit and maybe help me think of some possible solutions for it.
So let them be the parent.
Yeah.
Let them parent us. Like, the new baby has arrived now and we're still worrying about this. And I'm being torn there and I don't want to let you down. And it's waking me up in the middle of the night. I'm worrying about it. How can I do all things and what could we do as a family so that all the things get done and you don't feel abandoned. Mum. And then be quiet. The secret ingredient in all of these conversations is just shut up. You know, give.
Don't have time to shut up. We're like, quick.
Okay, quick.
Tick, tick, tick.
Mum, I've been thinking about this and
what you need is a carer twice a day. Okay? So do you want this agency or that agency? That will go nowhere, won't it? Where is this on Mum. Okay, how. How might we. What could we. Have you thought about it? I know Dad's been nagging for a while. Yeah, he has been talking behind your back. But I don't want him to take over either. How do you want it to happen? And then just be quiet and be quiet for longer than you think.
I'm practicing being quiet. That was a whole two seconds. That was really hard with my father. He was the most loving, giving, sweet natured man and he didn't want to be any trouble. He didn't want to be a burden. So it was very hard for me to get him help. And the best way with him was. Dad, I can't sleep. I'm really stressed. I'm really worried. Anything for you, darling. So that is often. Yeah, because you're giving them agency, you're giving them, they're helping you to help them in that situation.
And that's restoring the natural order of the relationship, isn't it? Because many of us are parents of adult children, we don't feel differently about them because they're grown ups. We are getting the messages from them to back off because they are grown ups. But we're going to feel like that
when they are 70 and we are 90.
We will still feel like that.
Yes. It's hard to put yourself in that place. We've just recorded an episode actually on kid alts that we haven't played yet. But I found it enormously. I'm just getting free therapy through this podcast really, basically. But I found it fabulous because it was like, well, when you have got adults at home, you stay in parenting mode, you keep parenting them and then that means you're working harder for them, but you've got to treat them a bit like flatmates and say, don't be shit flatmates. And I found that really helpful. So we've got to stay a child with our parents, but perhaps not over parent those kids who are still staying at home, as many are in this room. They've still got kids in their 20s and 30s. And I was speaking to someone before whose kids have come back and had kids in the home as well, with four levels of caring. So sometimes we step out of that role and sometimes we lean into it.
And that's tricky, isn't it? Because what you're actually describing is giving up the power in both directions. It's actually becoming powerless. We're giving the power back to our parents generation. We're happy to do the gophering, but the decisions have to be their decisions or they will resist them. And at the same time we're biting our tongue with our young adults because it's not my place to comment on that anymore. And that's so hard. So we're giving up being the problem solvers, even though in our heads we
can make the list of all of
the things that would just make this
right in an instant if people would just.
Just do as they're told.
Or is it just me?
No.
Okay, good.
Yeah.
I think we get a bit imprisoned by our competency, don't we? I'm sorting this. I'm sorting that I'm sorting that, but sometimes that's not giving the space for them and the freedom to do that. What about denial? It's a big thing we've talked about where often and I suppose you're reducing the denial. If you're coming in open minded and tender and you're getting them to think about things, but often there's I'm fine, don't fuss, I don't need any help, I'm doing just fine. Stop being a nag who's been called
bossy
really hurts being called bossy, Catherine. It really hurts when we're not bossy people. But obviously that's when we are going to bullet a gate. But talk to us about how you navigate around denial in a.
So first of all, let's just say a few words about the importance of denial. If you don't believe that there is a problem, if it's a complete mistake that the lung cancer on the X ray is actually somebody else's X ray, isn't mine, or the person who went into forward gear instead of reverse gear in the car park at the supermarket and caused it to disaster, it was because, I don't know, I was distracted. It isn't because I'm losing my ability to drive.
Can you relate?
It's not really a problem. And if you don't believe that it's a problem, you don't have to do any of the emotional processing of dealing with the problem. So it's a fantastic emotional wellness tool, denial. And if you can maintain the denial, you don't have to feel any of the distress. So when we start picking at the denial in order to help the person to recognize the uncomfortable truth, we are also inviting in all of the demons of oh my God, if that is true, then this is true and that is true and this might happen and that could happen. So it's not just the thing we're talking about, it's kind of opening the door into a room of all sorts of other possibilities as well. So denial itself isn't a problem. It's the behaviors that can't change whilst denial persists that's the problem. And so one of the really helpful tools that I was taught by a psychiatrist who did a lot of work with cancer patients about denial was the question, do you ever sometimes, even if
it's just for a tiny, tiny moment,
wonder whether X might happen or feel less certain about that or something like that, so they haven't got to say, oh yes, obviously I realise really I'm just pretending they Just go. Actually, sometimes I do have that scary feeling that it might be true and I hate it so much and I close that door again straight away. Okay, that's really helpful because it helps me now to know that part of you knows and your subconscious is guiding you to stay calm by pulling a curtain across it for you so that you don't have to feel all those scary feelings. So now the next question is, can we talk about one of those moments when you felt afraid? And now you're only having the conversation about that little bit. You're not pulling the curtain right back. You're not opening the door to all of those things. When you feel afraid, what are you afraid of? What's the worst thing that might happen? Is a great question. What's the worst thing that might happen? And what would be so bad about that? And if that were to happen? Let's think about that for a moment. If that were to happen, how do you think we would all deal with that? What would you want to happen next if that thing you fear happens? So now you're not talking about as though it's going to happen happen. You're talking about, well, what if it did happen, which is somehow less confronting, it's slightly sideways. Does that make sense? And you're talking now about you feeling afraid about it, rather than practical solutions to start off with. So when you feel afraid that you might not be safe enough to drive anymore, what is it that worries you the most about that? And what would be really bad about that? Okay, well, let's understand that. When you've thought about that, what ideas did you have for how you might reduce the danger or change something about the way you're driving or when you're driving or the vehicle you're driving? What could we do that makes it better? And what is it about? Driving is a really good example that is so important. What would be the workarounds?
So then you go into the root of the independence and the grief and the loss of that and the agency and the identity, I think with things like getting care. So to help people who are caring for a parent, getting them help. And often they don't want to do that and they don't want to move into aged care, but they also won't get help in the home because they don't want a stranger in my home. It'll be a different person every time. Everyone's heard the same things.
Yeah.
Is that about fear, do you think? Sometimes? Or is it different for every person? It's about finding why that denial's there and why that refusal is there is the key to opening that door just a little bit.
Yeah, I'm sure that's right. Because when somebody says oh I don't want that, the way our brains are wired is that we will hear I don't want that. And we will also explain to ourselves from what we know of that person why they don't want that, which might not be anything to do with the real reason that they don't want that. So we're working on assumptions. Okay, so you don't want that. Okay, I've heard you say that. What is it about it that you don't want? Help me to understand. Let's think about what the other workarounds might be and then the other just like what's the worst thing that could happen? Is a great question. Another great question is if you had a friend who was in this situation, what advice would you give that friend? Oh, so. And we've seen it happen, haven't we? So our elderly relatives have a friend and she didn't want that either, but her daughter made her. And how's that turned out for her? Well, she's been very lucky because she loves likes her carers.
She's got nice one but I know mine would be terrible.
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So you mentioned fear before and I think this is a huge one, isn't it? And it's understandable how big an issue is fear with those we love, who we're trying to help and care for or even with ourself, which blocks so many of the important conversations and planning we need to do about our life.
That's really important, isn't it? And we've all, we're all familiar with this, this idea that this thing that we don't want to happen might happen, whether it's, you know, you're applying for a job and you might not get it, or there are redundancies at work and you might be chosen or. And very often, because it's so scary to think about, the way we deal with it is by not thinking about it, by distracting ourselves, by doing something else. So we, we are humans and this is how we're wired. And now we're trying to have a conversation with a person who's doing that. So to be able to say, listen, I can hear that, that's scary. And I'd really like to understand what the scary part of it is and what that's about for you, because I want to support you through it. I get that it's scary. But what might frighten me might not be the same thing as would frighten you. What do you think? Tell me. And then again to just pause, to just wait. And the first time you feel that the silence has lasted too long and you feel that bubbling of words coming up to just go, oh, yes, I'm not going to say that. And it's so hard. We have to practice, and we have to practice it on relatively innocently things because the more it matters, the harder the. Making the words come out of your mouth genie works. So we have to really practice to be able to do the dead tough ones, like care, moving home, taking over the finances, whatever those things are.
And then there's also anger, which I think goes with fear a lot too, doesn't it? What do you do when you get anger back at you? I don't. When you're having. Trying to talk about something very important like, you know, what, what would you do if you're in hospital? And let's talk about if you want to do an aged care directive or something like that. What do you get when you get anger and resistance? And I think, I mean, it's worth saying, isn't it? It's never just one conversation. It's lots of tender conversations. Because one conversation is too much and too intense.
Yeah. Overwhelming for all parties. And of course, if you, if you do that and you hurt everybody and everybody ends up in a froth and in tears, then it set you back months about being able to continue the conversation at all. So bite sized chunks is the way to eat every elephant. And you know, we just need to respect that. So anger is really interesting. I have a very wise friend who said to me once, anger shot shows us what really matters to us. We don't get angry about stuff that isn't somewhere very, very important to us. And anger always is about must and should or mustn't and shouldn't and fairness, a sense of fairness. So people are angry when what is fair is not happening. It's not fair to remove me from my home, it's not fair to take over from me. It's not fair to talk to me like that. I changed your nappies and you're treating me like this. So actually once that part of the dialogue has started to happen, we're not going anywhere with important decisions today, are we? But what we have to be able to show is that we're prepared to sit with people's uncomfortable emotions. So now we're in the CrossFit to be able to sit, say, God, this really matters to you, doesn't it? And it's making your feelings really strong, isn't it? This is really hard for you, isn't it? And it's hard for me too. I'm really sorry that this is the situation. What's the way forward now? Is it too upsetting to carry on talking now? Should we take a break, have a cup of tea and talk about it another day? Or now you're feeling so furious about it. Would you rather we just damn well got it over with? What do you want us to do now? So validating the anger because the anger says this matters and I can be cross with you, which actually is quite a compliment, you know, I trust you enough to show you my fury is quite true.
They must feel safe with you. I suppose it's like kids, they can behave better with you because they trust that you're always going to love them. So if they can show that anger.
Yeah, so there's something about recognizing the emotions, naming them in some way or at least just saying this is really upsetting. You don't have to say cross, angry, furious, rude. But it can be helpful to see, say mum, you know, I can see this is really upsetting for you and actually
it's upsetting for me. The situation is upsetting and you being upset is also upsetting.
I don't like that you're upset and I want to help, but right now I'm not quite sure how.
I mean, you mentioned something really interesting there about Us getting upset and about rudeness, when do you stick up for yourself? If in tender conversations with people, when do you go, well, you've hurt me now. When can it be about you? When's it about us?
Isn't it tough? Because actually, a lot of the time
it's interesting that we're trying not to parent our parents and at the same
time the rules of parenting actually apply
because we are doing nurturing, caring, but just upwards instead of downwards. And so it has to be mainly about them, but we also have to have some boundaries or we will just unravel and not cope. So to be able to say, okay, hang on, I know that you saying that is because you are really, really upset now, and I understand that you need to say it and I think you probably know also that it isn't kind, but you feel it. And I'm glad you feel safe to say it, but I would feel better if we took a little break now. So how should we have the break? So we're not trying to take control, keep giving it back. How shall we. What shall we. When shall we keep giving it back to them, but also saying, oh, hang on, this is so upsetting for you that maybe we need to take a break, or the way it's upsetting you is now upsetting me. I need to take a break.
Yeah, I think that's a very good idea. And we do say that with Put the Kettle on, it's a series of conversations and that's much better. You mentioned hospital before and you've got some incredible stories in your books about the end of life and you're very passionate about people talking about this more, being aware of what it is like. And the problem is when you're in hospital with a parent or someone you love, you're so stressed you cannot think straight. And it sometimes feels like doctors are not actually communicating with you in a way that they should, so you can't understand the nuance sometimes of what they're saying, or they blind you with facts and figures. You've done a lot of work in hospitals and you learnt so much along the way. But how should we try and get doctors and physicians to talk to us in a way that they should so that we can actually be present and listen and understand.
I've been observing them for years, like specimens, and what I've realized is, is that because actually, people don't really understand the process of serious illness and dying anymore, because we haven't sat at home looking after families, friends, neighbours during their dying, which is what would have happened 100 years ago, both in the UK and here in Australia, people don't recognise it and then they go off to train to be nurses, doctors, paramedics, female physios, all those other things where, I mean, I went to medical school for five years, I spent five years being trained how to stop people from dying. Nobody talked to me about what happens if you can't stop people from dying. And you know, we jointly have the worst mortality rate in the world, 100% in Australia, 100% in the UK and yes. Yet we're not talking about it.
Isn't that amazing? Like, are you trained to sort of think it's a failure if a patient dies?
So I think that's what happened. I think medicine got really clever in the 20th century and it was able to do things that could postpone this person dying today or this week. So instead of just sitting around the bed waiting, we blue lighted them. Are your lights blue as well? In Australia, our ambulances have blue flashing lights. We blue light them into hospital and now they're surrounded by machines and staff and stuff. And a lot of the time they get better, which is fantastic. But sometimes they don't. But we did everything. And so you know those conversations where the doctors are obfuscating those dear doctors often haven't recognized that this person has started to die. But there are people in the ward who have noticed and those are the nurses to whom the doctors are not paying sufficient attention. Is it possible that she's not going to get better this time? Doctor, do you think it would be wise to prescribe some of the end of life comfort drugs on the prescription chart just in case the nurses might need to give them when you're not here. No, no, no, no, it's not as bad as that. Oh yes it is.
The nurses are often having to tell the doctors.
Yeah.
And because they don't recognize it, they don't understand it, they can't talk about it, they can't describe the process of dying. If they need to have any conversation that's about really serious illness, or they need to talk to you about referring to Heaven forefend, the palliative care team, well, that conversation might end up talking about dying because they don't want to talk about dying because they don't know how to talk about dying, they're trying to hyper manage the whole conversation. So we're back where we were with the conversation with our parents earlier, which is, I want to talk about this. Don't you dare divert my conversation into that because I'm not comfortable there. I want us to talk about this.
So you've got to try and get a doctor to talk about it. But I did find with my dad when he was in hospital, it was a nurse. It's so interesting you said that. It was a nurse who said to me, you can tell them to stop now. So that's a really good. That's good for all of us to know, isn't it? Look, to the nurses, it is the doctors.
And also you could cut the doctors a break. You shouldn't have to. Because it is their job to be professional and do this well. But I don't think yet we're training them to. If you were to say to a doctor, do you think my dad is so sick that we should think about the possibility of him dying? You will see the doctor's shoulders come down. Oh, thank God somebody's opened that box. And we can talk about that now. They don't know how to get to there. But if we present them with there, do you think we should be talking to the rest of the family about coming over from wherever it is in Australia is at big distances or further afield? Is he so sick that dying is a possibility? They can do that then. Actually, do you know what? We're still hoping not, but yeah, that is a real possibility. Gosh.
Still have to do the work, don't we?
We do.
Is anyone else feeling that? We've got to kind of think, okay, I'm going to bring this up. It's disappointing. I think we're getting a little bit better at it. I mean, another really important one is that I'm going to come to your questions. So is what not to say when you're having conversations with someone around death and dying and you put some of these in listen, which is really good because some of these are shocking. But we all often when we're upset, come out with platitudes that we shouldn't. So what would you like to train us? What not to say?
Well, one of the things that happens is we go into our fixing mode. So we start making suggestions for how we can could make it better or a second opinion that we could have or there could be a different way of looking at this. Or at least he's had 97 years. Practically anything that comes out of your mouth that begins with at least is the wrong thing to say. And so being able to say something along the lines of, okay, that sounds really serious. Tell me more, tell me more is another one of those. Take Home questions. Tell me more about that. What's that like for you again? What do you think is the worst part of this? How are you coping with that? What do you do to deal with that when that thought pops into your head? Just gives people permission to start to talk about it and not feel that they've got to look after you while they're going through this terrible thing themselves. So whether that's somebody who's accompanying a relative whose health is unraveling, whether it's a person who's bereaved, bereaved, people pretend that they're okay so that the rest of us won't be upset. My God, they're already grieving the death of a really precious person and then
they've got to go into performance mode
so that they don't upset us. In the supermarket, they see people crossing the. The road, changing aisles so they don't have to make eye contact.
Yeah, don't say, don't cry. I'm sure they'll be all right. All of those sort of things.
It's so don't cry is such a kindly meant thing. Oh, don't cry. I'm sure it's going to be okay that, you know, the doctors will find a way around this. No hundred percent mortality.
Sorry, Australia.
But also, maybe there will be something that will be rescued from this on this occasion. Like the symptoms can be properly relieved, like the person can have a period of calm and clarity in the last period of their living, like they wanted always to see their grandchild born. So actually, we might not have put pushed treatment quite so hard for your mum on this occasion, but actually, if we can just get her the next eight weeks instead of just two weeks, and she might meet this grandchild. So knowing what matters most to people is really important.
Just a few more questions. What about when people are near the end of their life? Do you think that there is a inner knowing that they know they're going to die? Because you're talking tomorrow at this big dementia conference in Sydney. And when people have dementia, they may not be thinking, you know, clearly, they may not understand where they are and what's going on. But do you think even in those moments with people that there is an inner knowing of the death process?
I think that a lot of people recognise, so with dementia or not, they realize that what their body will do this year has far less energy and it's much more effort than it was a year ago. And then they're noticing that month by month they're less energetic, they're more weary, they have to rest longer, they can't walk as far as they did. They can't get as much of their housework done as they used to do. A meal takes forever to eat, whatever it is. So people notice the changes. And what's really interesting is in people whose thinking isn't clear any longer, they still talk about those things, but they talk about them in different ways. So one of the things that we see really often towards the end of people's lives who haven't been talking about dying is that they start to talk about travel.
Have you met this?
They're looking for their tickets, they're trying to find their passport, they're looking for the map. They're not quite sure what platform to
be on because they know they're going somewhere.
So they're getting ready for some kind of travel. And so if you say, well, no, no, no, dad, you're not on a bus actually, you're at home in bed. That is not helpful. His head is on a bus. Where's the bus going, dad, who's meeting you at the other end? Who do you hope is going to meet you? Is there anybody else on the bus with you? What are the other passengers like? Are you comfortable? Have you got everything you need for the journey? Is there anything I can pack for you? And you can actually have this conversation entirely in metaphor, that is about, I am getting ready to depart. Who's seeing you off, dad? How are they feeling about that? Actually, we can all see you off and we'll be okay. We wish you weren't going, but we'll look after Mum while you're not here.
Or, you know what, the messages need to be right and you can talk
about it in the metaphor that they've chosen.
Do you find the ticket for them? Like, do you just go in? Yep, here's your ticket, off you go.
So, quite often what the very clever nurses do, I've seen this managed in people's homes by their district nurses or in hospital or hospice settings. Is a nurse saying, don't worry about the ticket, you're actually a guest in our service. I am in charge of all of the tickets and yours is safe with me. I've got your passport too, in case you're going to need it, so don't worry. And then to tell the family, look, he. Dan's worrying about his tickets and his passport. Remember, remind him that Nurse X has got them all, everything sorted out, all the paperwork is in order, there's nothing to worry about. And now we're all on script. And he will carry on worrying about it, but we can carry on reminding him that it's all okay.
So just go with it, go with it. That's what we can do. And that's a great generosity of spirit. But sometimes I think. And it's where we started in the beginning when you're stressed and your time hurried, you're thinking to much in a prison of your own making, aren't you? So it's about stepping out and being with them where they are, allowing for the silences. Did half a second there and really listening to where they're at. I have got so many questions. We could talk all night. But I want to give you the opportunity and the chance to ask questions.
Thank you very much. That was the most incredible conversation and this part about traveling just is the most moving thing I've heard forever. So extraordinary. So thank you. I wanted to ask, how do you think the members of the sandwich generation should care for themselves in this context? So a lot of what you're talking about is how to be there and present for their loved ones, for their elders. Do you have any thoughts on ways that the sandwich generation can care for themselves during this?
That is such a great question and thank you for asking it because actually we are a little bit like boiled frogs, aren't we? It starts off it's a bit and then it's a bit more and then it's a bit more and then somehow we're lost. So one of the things I have found helpful in talking about to friends in similar situations, which is not.
This is not professional research, is to
think of it like a job plan, like you would have done at work. How many sessions have I got in a week? And how do I need to divide those up for the younger people and for the older people and for the admin and for the sadmin and then for me and actually try to keep that ratio. Now I knew a woman once who worked it all out and she had a great big glass bowl and for each hour of what she did in a week she had different coloured marbles. And so there were marbles for work
and there were marbles for her parents and there were marbles for her kids
and there were marbles for self care and there were marbles for some voluntary work that she did because she did voluntary work as well. Oh my God.
And at the end of a week
she had a kind of small bowl with the right ratio of marbles and
then she had this big bowl and she would look and she Said, oh,
there's not enough blue in it this week. Blue won't surprise you was self care.
And in other weeks, there was way
more, I don't know, orange than everything else because the young people had been very, very needy. And there aren't any extra hours in the week. So she dealt with that by missing meals, not sleeping, getting up extra early. There's lots of people nodding in here. So there are different ways of doing it, keeping a record of it, but if we don't keep a record of it, we'll slip off it without even noticing. There's a difficulty when we keep a record of making sure that the record is simply for information instead of driving resentment. Because once we start to notice the
imbalance, we start to get touchy about it as well.
So just sampling every now and again might be good. And then also looking for. Who are the helpers? You know, when you're learning to ride a bike and you have stabilizers, who are your stabilizers? Who could you actually say to for one afternoon a month? You know, I absolutely. My head is completely done in. Could you do my afternoon for me? Me, with my kids, my auntie, whatever it is, so that I just, you know, I don't know, lie in a room with a duvet over my head or go to yoga class, or get through half a bottle of gin, whatever it is that somehow will restore us. And obviously half a bottle of gin, I feel obliged to say, probably won't, but it's hard. And even the fact that we're asking the question that we're thinking about self care is really important because the resource that we're using here is ourselves.
And if we let ourselves get too
completely empty, you know, what's the expression?
You can't pour from an empty jug. You just need to keep refreshing yourself.
Yeah.
If we burn out, the whole system's toast is what I like to say. Yeah. So the blue marble can be self care. There'll probably be one at the bottom of the jar and we'll be losing our marbles. But let's try it, right? That is the thing. It is really important because if we do burn out, the whole system collapses. It's so important. Any other questions? This one right up the back while you're. While you're heading down there. I think siblings is a really interesting one, and we've done one episode on this in the podcast, but it often comes down to one person in a family who's in the sandwich generation, and you mentioned resentment before, that can really damage family Relationships and resentment with the other siblings. So I suppose everything you've talked about tonight goes for the same with opening up the sibling conversation as a tender conversation.
And that's really important. And so from personal experience, I am one of five.
I am the oldest sister. Clearly I should be in charge.
However, I live four or more hours
drive from my parents and my youngest
sister lives in, in the same village. She's retired and she is their principal drop in, sorter, outer. When I see them because I haven't seen them for a few weeks, each time I notice changes that she's less likely to notice because she's up close
and personal with it all the time.
How completely unhelpful would it be for
me to point things out to her?
And because luckily I've been at the
bedsides of patients and watched that dynamic playing out in other families, I've got this lovely relationship with my gorgeous baby
sister where I can say I've got some big sister concerns. Is it a good time to talk about that or not? And are you okay? And how can we help you?
Are you okay? I think I'm about to burst into tears. That's not one that the, the sibling who's overseas or away often says. And it is often geographic, isn't it, if you're the closest to your parent, even if you're not the oldest. But yeah, starting with them. She's amazing, isn't she?
Incredible.
I know. Yes. Go high up the back.
Hi. Excellent talk. Thank you very much for that. I think for the sandwich generation, sometimes these tender conversations can be really frightening because each conversation is a step towards the inevitable of loss. So what's your suggestions on how to overcome that fear and take away that barrier to be able to have these tender conversations?
Can I ask you some clarifying questions about your Excellent question? Would that be okay? When you think about what the awfulness is that's hovering at the periphery that you think each of those conversations will creep towards, what is that? That awfulness?
I think inevitably it's the loss of your loved one. It's the loss of the person that you're caring for. It's watching them slowly or quickly lose their interest, independence, watching them fade away from what they were.
Yeah.
Yeah.
So what you're describing has got a name and it's called anticipatory grief. We are mourning who this person has been. Usually luckily a powerful, loving parent, but sometimes a powerful, horrible parent. But we've still got responsibility for them. And those people are mourning two things because they're mourning the loss of the person to whom they're emotionally tied, even though it hasn't been a nurturing relationship, but they're also mourning the fact that it's never going to be that relationship before the person dies. So they are actually losing two things. That kind of ambivalence that they want them to be a better person at some point, even if they. If it's just for a day before they die and it's not going to happen. There's a lot of people in here with us on that, so we need to have a think about. Does the conversation make that come any closer? Talking about dying, will it make people die in the same way as talking about sex? Will it make people pregnant?
Just asking.
Or is it that we start to emotionally process when we start to talk about it? And we open, as we started at the very beginning of this evening, talking about our vulnerability, being prepared to be vulnerable, being prepared to feel those difficult emotions in order to accompany the person who's having possibly the more difficult journey, but also opening ourselves to understanding that this person to whom we have a really strong emotional tie for good or ill, is fading towards dying. And so I think it's really important that we're kind to ourselves. And I think that one of the things. Well, I think I know that one of the things that has been helpful to people. I didn't think this book was revolutionary with the end in mind. It's just stories about how people live while they're dying. But it turns out that when you tell those stories and you help people to recognize what dying looks like by seeing it over and over again, which is how my Nana understood it, because she looked after people when they were dying over and over again. It's really empowering because people stop wondering what it's going to be like and thinking it's going to be like a
soap opera death or a cinema death,
and start to understand what the process that people's bodies go through while they're dying, knowing that helps us to be more courageous, helps us to be better informed, helps us to recognize the changes that are happening and know them for the ordinary changes of human biology towards the end of life. And it doesn't matter whether what you've got is heart failure or liver disease
or dementia or cancer, the steps look very similar.
And maybe realising that although this is happening, it's not happening in a catastrophic way, it's only happening in the ordinary way helps us, but it also helps us to notice when it goes off piste. So we can phone the doctor or the district nurse or the palliative care team and say, I don't think what's happening now is what's supposed to be happening. Can you check? Can you help? Can you help to get it back aligned again? So having a sense of knowing what to expect helps us to be better emotionally prepared as well as practically prepared. That felt like a bit of a ramble. Do you think it answered your question?
Yes, it did.
Thank you.
Was there any more questions?
Oh my gosh.
There's a couple more I hope we can get to everybody.
Catherine, what advice would you give to all of us on how to be the best parent to our children in terms of having these conversations about ourselves with our children? I've got a teenager and he'd probably freak out if I tried to have them now. But I suppose I'd like to be able to have them because I've got an in law who's very much in denial. I don't want him to have to go through that.
I love that revolutionary question. How can we make the next sandwich slightly less difficult when we are the top layer instead of the middle? I would love first of all that life cycle education in schools didn't stop at sex and babies and included illness, aging and dying grief. We're still campaigning to get it onto the national curriculum where I come from, from the nodding in the room here, I suspect it's not in the national curriculum here either. But if ordinary dying was on the national curriculum, then there would be parents evenings, wouldn't they? Like there are before they do the sex ed sessions or before they do. We want the parents in to explain how we do long distance division in this school so that you don't use your workarounds and confuse all the kids. So imagine the parents evening. That's the prep for the death ed conversation. Because you would educate the parents of a school at the same time as you were educating the students of a school. There are really important books that we can look to. Bluey hasn't.
We all know Bluey.
Yeah, okay, I'm not from around.
We invented Bluey.
I am not from around here and even I know Bluey.
So Bluey has at least two episodes on serious illness and there's one on death and grief. And I want to be like Bluey's dad when I grow up because whoever's
writing their scripts is absolutely superb.
But being able to help our kids to understand just the nuts and bolts, the facts of death as much as the facts of life is really Helpful. This isn't an advert, but I've got a website. I don't make any money from my website, so it isn't really an advert, but there's a little video on that which is called A Beginner's Guide to Dying, which is. It's four minutes and it's me talking, describing the process, but our company paid for it to be animated and the animation and the music is extraordinarily beautiful and doesn't spook you. Some people have seen it and that would be a really helpful four minute intro to just the ordinary process. And so, first of all, when this starts to happen to Granny, this is what we're going to be watching and accompanying. So that might be good prep now, but also in another however many years time. Remember when it was hard to get Granny to talk about that stuff? I'm not sick, don't think I'm dying now. But I want to have a conversation with you now so that when we need to refine the conversation because I am three decades older or I've got a serious illness or whatever, and we know what it is that's going to end my life, we'll be updating this conversation that we're starting while I'm still well. And I think that maybe we should have what matters most to me conversations, which actually are joyful conversations, aren't they? What gives my life meaning every time we've got a zero in our birthday and then after the age of 70, maybe every time we've got a five in our birthday as well.
I think, yeah, that having aging parents really helps you start having these conversations because they're witnessing what you're going through with your parent and you can talk about how you'd be different and what you want and just bring it in. Well, it's like the sex education, isn't it? You just do it slowly and age appropriate and get more involved and intense as they get older.
And never look embarrassed.
Never get embarrassed.
Never look embarrassed.
Thank you for great conversation. I just wanted any tips on how to have these tender conversations with other members of the family about your parent, people that might be on different pages. So tricky.
It is tricky.
And again, so my observation now is from having watched lots and lots of families trying to do this and the people who are, you know, they've done all of the reading, they understand what's
going on and then there are other
members of the family who just are not there yet. And so just a little reminder that the ones who are not there yet are doing denial. Okay. So they're frightened when they try to open the door a little bit. It's too awful. So the same technique would be useful, which would be to say it would be really helpful for me to be able to talk to you sometime about the changes that I'm seeing or about the things the doctors are telling me about. Whichever parent it is, it doesn't need to be now because I know we're both really busy, but I don't want to miss the chance and it is worrying me quite a lot. Do you think sometime in the next couple of weeks, in the next month, next time we meet up, we could take 20 minutes to just go through that and actually treat yourselves afterwards, at the end of the time that you've agreed, you're going to do something nice that's completely distracting. So whether that's tea and cake or an episode of Bluey for parenting skills or whatever it is so that you don't let it dribble into.
Oh, and another thing.
And that time when you. And suddenly all the old stuff comes back as well. So time it, keep it light, do it. Say thank you. Thank you for listening. I know you don't see it the same way I do, but I've been feeling quite lonely feeling it this way.
And I feel just a little bit
better now that I've shared it with you.
Thank you. Okay, one more.
Thank you so much for this conversation. And I've gotten so much out of your books. I'm a nurse and I also work in end of life care and have supported my father and my stepfather at the end of their lives. And I can't tell you, like, how beautiful, practical, comforting your guidance has been in these different spaces. Spaces. But I wanted to bring into the conversation as well today to acknowledge that so much of what makes it really hard is the infrastructure around us, the lack of support from our jobs to have time off or flexibility, the lack of financial support to get care in the home to get respite care. I work with people now, you know, often in regional areas where they can barely even get a doctor, let alone additional kinds of support. So, yeah, I just wonder what you might bring to that issue. It's a tricky one.
It's a really, really great question. And one of the things that I'm increasingly aware of about with the end in mind. So I took early retirement to start campaigning about the public conversation about dying. I wasn't quite sure what I was going to do at that point. It turns out that it was this. But I didn't know that then. And I read those stories now occasionally because I've given everybody pretend names and try to, you know, anonymize everybody. And I realize that I'm describing a kind of golden age of me. And things have changed so much in the 10 years since I retired at home and here in terms of the stretched and creaking infrastructure. And I've started now to get messages from people saying, I feel betrayed by you. You led me to expect it to be better than it was and services let me down and that my heart breaks for those people. This is political. We have to get our politicians engaged with this. In any country that's got a 100% death rate, there ought to be a strategy about dealing with people who are living the last parts of their lives well, a strategy about training people to understand the ordinariness of dying and the extraordinariness of the privilege of a looking after them while they're doing that. And we have to start really pestering our representatives in government. We can't do this on our own. This requires political will.
We can't do this on our own. That is so true. I know this has been a conversation that is really powerful, confronting, distressing, upsetting, but also bloody beautiful, right? Just extraordinary. You are incredible, Catherine. You are just a queen.
Thank you.
Today's episode was supported by Australian Unity Home Health and Care, proactive local care that helps your parents stay independent and living well at home, visit australianunity.com auclubsandwich.
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There are five questions really worth asking your aging mum or dad before crisis answers them for you. The hardest conversations with our aging parents. Of course, they're the ones we keep putting off, so we've made it easier for you. We've developed a conversation guide called Put the Kettle On. Five Gentle Questions, developed with clinical psychologist Jo Lamball and the VERA team to ask over a cup of tea at the kitchen table before any of those big decisions have to be made. Guys, you don't have to get this perfect. You just have to get it started. Because the more you understand what your aging parents want now, the easier every decision becomes later, and the more it stays their life lived their way. So put the kettle on. Download our free guide at Vera Guide. It's free, safe and secure, built here in Australia with families and experts.