Speaker 1Hey guys it's Sal. Before you jump into this episode I wanted to let you know that we have discounted our grief and loss affirmation cards. They're now $15 a pack. I think they were $40 a pack before so an absolute bloody bargain. We know Christmas is griefy AF and we wanted to be able to support you guys so if you want to buy a pack for yourself or to support someone else they're a really lovely gift. They're a great way to support us as well and they're only $15 a pack. So head to our website that's where you can find them and sending you so much love. You're listening to Good Morning, the podcast talking all things grief with honesty and humour.
Speaker 2Welcome back to the Good Morning podcast.
Speaker 1We're your hosts Sal and Im and we are coming in hot with an incredible guest. I'm super excited for this one. How are you doing him before we get into it? I'm doing good sorry I've got a bit
Speaker 2of a frog in my throat. God why does this always happen as soon as we start recording? I'm doing okay though besides the frog in my throat. What's been happening for you Sal?
Speaker 1Well it's been quite a busy a busy wee while because we've launched our membership and there's lots going on. Very exciting things. I actually have kind of redone my office since we released our Alison Dubois podcast. I've been doing a lot of work on my own and I've been doing a lot of work on my own and I've been doing a lot of work on my own and I've been doing a lot of work on my own. Alison Dubois episode if you guys haven't listened to that one she's an amazing medium it's well worth a listen but she talks about having pictures of your person or your your loved ones in your home space to connect with them and so I've really ramped up the pictures of my mum and my nan and my you know my dad's parents my other grandparents all around my office. Oh my god
Speaker 2like how many are we talking?
Speaker 1Oh probably like 10 but that's still like you know that's much more than like one. Yeah I feel like I'm at a place in my grief now where I can have more pictures of mum around without it feeling overwhelming. Like I know we spoke about this years ago where sometimes looking at pictures of them felt really hard and it was almost like no I don't want to. Like they're you know going through phases of like looking at the the pictures or having pictures around it was just too painful too much of a memory and I know it's different for everyone some people might find that really healing. I feel like I'm at that stage now where it feels comfortable and good to have loads of pictures around and it doesn't feel triggering or painful when I catch a you know a glimpse of them.
Speaker 2I love that yeah that gives a lot of hope I think for if people are newly bereaved or listening to this and are in that place that they can't look at pictures knowing that you know it does change and you have gone to that place now where you can and I and this is where I think it's really important to me. I think it's really important to me. I think it's really important to me that I'm able to talk about these things but how different grief is for everyone and I still don't think that I could do that which is interesting. Yeah I still I've got pictures of my mum up in my daughter's room but I still don't like look at them very often because it just I don't know it takes my breath away or just makes me think that she's dead and yeah I don't know it's interesting but maybe I'll get there and my sister her fridge is covered with photos of my mum so she's very much the opposite. She's got photos everywhere in the house whereas I am not there yet but it's good to know that one day I shall get there.
Speaker 1Yeah yeah hopefully and it is it's different for everyone isn't it like there's definitely like times where I like sort of look at the photos and I it just and I hope this makes sense and resonates with people it might not but I think it will like you're looking at a photo and you're like I know you existed and you were alive for a long time a long part of my life but it's still looking at this picture feels. Like it's strange that you existed or you know that kind of like slight surreal surrealness to it do you know what I mean?
Speaker 2Definitely yeah it does get to a place where you're kind of like were they real was that all real like you know that they were real but it's become so far away which is sad but it's a bit of a you know a head fuck.
Speaker 1It's a it's a mind fuck isn't it it really is um it's it's it's yeah it's one of those things that you could if you think too deeply about it you kind of yeah yeah put yourself back
Speaker 2yeah yeah I get that with like thinking about the universe and space ever since I was a kid like I'll go really this is such a tangent. Look if there's one thing you can rely on a sport it is a good tangent. But I do like if I start thinking about the universe or the space or how we're just this like planet this round planet and out there is just never-ending planets and stars and universes like I really don't know what I'm going to do with it. I don't know what I'm going to do with it. It's going to really start to spin out and then because Layla she's five now so she's really interested in like the planets and space and the universe I don't know whether that's really normal for her age but um we've got like space books now we're learning about the big bang um anyway so I'm really like in that space now I'm like wow we really are just a blip in the universe. Anyway existential crisis.
Speaker 1But I think that also is good to keep in mind when you're having one of those days where you know you're stressed or something's bothering you or a blip. You're just a blip in the universe you know. Just a blip. Yeah you're just a blip let it go if you can.
Speaker 2Anyway off on the tangent.
Speaker 1Oh my god can we also talk about very quickly because I know we touched on in our um in our intro to Alison Dubois about Byron Writers Festival but we did not touch on the fact that I missed the flight home. How did we not talk about that? Like a massive like a massive funny moment so okay long story short Im and I we'd spoken on a Saturday we were our brains like were completely drained. I'd had the flu the week before so I was literally in bed just praying I would feel better um I think we got there at 8am and then your last talk finished at 5.30 so it was a long day to be on right and then we went out and had a few drinks the night that night with some amazing fellow authors a few drinks and a kebab um so so then the next day we were like a little bit hungover and logged into the Virgin Australia app to try and get some sleep. I think we were like oh yeah you're like you see like you checked in it's green or something I don't know.
Speaker 2No you know what it is I think I looked at because you had like the seat 5e so I was like oh she's already got a seat okay so I moved my seat to be in the row in front of you in like 4e and then I couldn't change anything on your booking so I was like oh you already checked in and you got a seat but that was your fucking flight to Byron. Not your flight home.
Speaker 1Oh yeah yeah and then I I just like okay cool and then like and then we got to the airport and there was like no one at the checking desk and so I don't know like it's so strange because I'm literally one of those people who normally arrives at the airport five hours early you know checks they've got their passport like 20 million times like you know I'm very like vigilant but for some reason my brain was like yeah I'm on a hiatus today sorry um so so I literally like I'm like oh my god I'm like oh my god I'm like oh my god I'm then they called our flight and we're in the queue and I was like shit am I where's my where's my boarding pass like literally this massive queue got to the gate and they were like like they the the flight attendant was a bit arty wasn't he and um he he was like oh yeah Imogen yeah you're checked in um and then looked at me he's like sorry you're not checked in you can't go on the flight and like I was like what the fuck and it's this tiny little airport like it's not like it's like it's still a little tiny airport and it was like one of those scenes out of the movies where you were like had to get on the flight and you were
Speaker 2like I was excruciatingly like hard to do I felt so so bad especially because I was like yeah yeah you checked in it's fine and then I was checked in and you weren't then I obviously had to get on the plane because if I didn't get on the plane then we're gonna have to pay like two you know whole plane tickets but anyway it was a nightmare and I was like quick google like when's the next flight out of here because I was like we can put you up probably put you on a flight tomorrow and I was like what are you gonna do you can't just sit at the airport or not no it's so
Speaker 1fine you know what I had a little cry called and got over it very quickly had some wine and a massive like plate of chips and I was fine it happens and you know I managed to get on a flight like a couple of hours later so worse things happen um and it's funny yeah and I was like what happened like my why did why did my brain like flatline in that way who knows but anyway first and hopefully last time I ever miss a flight yes I hope
Speaker 2so um I've used all the brain
Speaker 1juice on talking about grief yeah my brain was like sorry I'm out peace out peace out a town anyway again we could talk forever about us and what's been going on but let's talk about the guest because she's amazing let's do it who are we talking to so we are talking to Dr Catherine Mannix and some of you might have heard of her she is based in the UK and is the author of two best-selling books with the end in mind and listen she is a doctor and she specializes in end-of-life care and she spent her medical career basically working with people who have incurable advanced illnesses and that has inspired her work I actually think that her book should be mandatory reading for everyone her first book is called with the end in mind and it says it says it shares stories of people who are at the end of their life and basically the dying process it basically shares stories of what it's like to die and I think for anybody that's supporting somebody who is you know at the end of their life or who has an incurable illness or if you're just curious if you know you just want to know what death is that the dying process is like I highly recommend the book and it's actually a really it's not like a depressing read um it's it's I actually I would say it's probably one of my favorite books I really really love it
Speaker 2I love that and something that she also talks about in her work which I think is fascinating is that the experience of death is trivialized in popular culture so we have no common understanding of what actually happens when we die which is
Speaker 1interesting yeah I think you know over time in the last maybe 50 years or even longer than that we've become quite a death illiterate society but if you look back like 80 to 100 years ago it wasn't like that like death was a part of everyday life but then with the you know with medical advancements people are often used to cures or life expectancy being prolonged whereas back in the day before you know medical advancements people were often much more used to caring for people at the end of their lives and so they were more educated and aware on the dying process um yeah and I also
Speaker 2think that this has changed people's perceptions of illness and offered a bit of a cure or at least a hope of postponing death so shall we jump in let's
Speaker 1here's Catherine Mannix Catherine it is so wonderful to have you with us today we absolutely love your work and I know I said to this um to you off air and it's probably weird for me to say that a book about death and dying is one of my favorites but your book with the end in mind is absolutely brilliant as is your second book listen and we're just such massive fans of your work so welcome to the pod oh
Speaker 3thanks Sal and hi Im it's just it's lovely to be here thanks for inviting me
Speaker 2Catherine you're on a mission to reclaim public understanding of dying which we are a hundred percent here for why do you think that here in the west we find it so hard to talk about death I
Speaker 3suspect it's partly because we've forgotten about what dying looks like and I think that when we understood it better perhaps we didn't talk about it anymore but it wasn't secrecy it was simply familiarity so why would you talk about it and so I think we're kind of victims of the wonderful advances in modern medicine in high-income countries where once upon a time we would have stayed at home and looked after our dying person because nothing could be done to prevent them dying now hospitals have got all kinds of things that they can do and so we send people who are sick enough to die into hospital in the hope that they can die and we send people who are sick enough that they won't die and of course sometimes they don't which is fantastic but it means that we've lost the familiarity with the process we've lost familiarity with being responsible for being the companions of that process we've kind of delegated all of that to medical staff nurses and the teams around them and we don't see the ordinary process because it now gets complicated by all of the medical stuff that goes on to try to prevent the death instead of saying goodbye and you know beginning our morning around the deathbed people are living in hope that life might be snatched out of dying to the last possible minute so they're less prepared so I think we don't know how to talk about it because we've we don't really know what it is that we're talking
Speaker 1about and the death rate is still a hundred percent it's not an if it's a when in this day and age we've lost like you say we've lost the skill of having conversations around death or knowing what to expect and your book with the end in mind aims to to change that by opening a door to stories about death and dying and you open that book with a story about a French lady who was facing the end of her life and she was very scared of death and very agitated and for me reading that story really illuminated the dying process so would you mind sharing that story with our listeners I'd
Speaker 3be delighted because I told this story because for me it was it was a life-changing and career-changing moment so I was a young doctor I've been qualified for a few years I've been aiming for a career in oncology so I've been working in hospitals and I'd chosen the places where the sickest people were so you know emergency departments intensive care units the regional leukemia service so I'd seen lots of people dying of a variety of causes and eventually got the job that I really wanted which was in the oncology centre hooray I've made it and then found that actually I was more interested in the people who weren't going to get better finding the cure for cancer didn't seem that exciting really it seemed to be mainly waking people having chemotherapy up in the middle of the night to take their blood and centrifuge and I was really excited to be able to do it and then draw graphs of the results and you know I know it's important but it just didn't do things for me but getting the symptoms right for people whose time was precious that was really interesting so about the time that I was making that transition a hospice got built in my city within walking distance of my house which kind of seemed a bit like a sign from the universe and I went to work there so the context is that I'm a fairly experienced but still very junior doctor and I haven't been working in a hospice very long when Sabine the most terrifying patient I think I've ever had because she was so French she was so chic and she just did not suffer fools gladly she confessed to the nurse that was looking after her that she was terrified of dying in case she had horrible pain as she was dying because that might lead her to despair and despair would be a mortal sin because she's a French Catholic and if she died in a state of mortal sin she wouldn't get to heaven which is where her husband who died a few years ago was waiting for her so this is a huge existential sorrow and fear for this amazing woman who'd been a member of the French resistance you know she wasn't frightened of much and now she was frightened. And the nurse came and told the young medical director my boss and he said oh we need to go and talk to her and so the story is of his discussing with her what to expect and he took me with him and I sat on a little stool and I just watched this conversation with increasing discomfort because he started off by saying to her I heard you were very worried about being overwhelmed by pain as you're dying which isn't the most subtle intro is it? But actually because he was fluently bilingual and spoke French he often would sit and just chat with her in the evenings and she was a bit flirty with him which was rather sweet so they knew each other really well and he could just you know go go for it so she said yes she was frightened of that and I thought he was going to talk to her about pain and the next thing he said was I wonder whether it might help you to feel slightly more at ease if I describe to you what happens as people are dying. And I'm thinking wait what you you know you can't do that because you know I'm 26 which is the age when you still know everything and I'm thinking I've seen lots and lots of people dying it's never the same twice so how can you tell her what's going to happen and she said yes she would like that so then he said well look it's the thing is that it doesn't really matter what the illness is towards the end of somebody's life the main symptom that we notice the main symptom is that we don't we notice the main change that we see is that people are more tired and they need more sleep to recharge their batteries their energy runs away and they find that they are alternating between sleeping and waking through the day to keep their energy levels up and you might even find that that's happening to you already and she gets hold of his hand and she she says yes that's happening and he says okay well that's good and I'm thinking oh my god no no that's not good because that means that she's starting to die and he's going well so that's not good and I'm thinking well that's not good and he's going well so that's good because that's that's telling us that you're following the normal pattern so let me tell you the next bit of the pattern if you want me to stop at any point I promise I'll stop and I'm sitting on my little stool thinking what what's he going to say so he says so the thing that we expect now Sabine is that the time goes by we see people get more and more tired they sleep more they're awake less until eventually the person is just not waking up at all and in fact at that point they're not even just asleep they're unconscious do you understand what we say in French and she's saying no no no I understand unconscious this is what happened to my husband yes um and he says so once people become completely unconscious the only bit of the brain that's still really doing its normal work is the bit that drives our breathing so unconscious people breathe in a really unusual way it's cycles that move backwards and forwards between really deep breathing and very shallow breathing and sometimes it's quite fast and then it gets slower and slower and slower then the pauses and then it goes back to the beginning gets fast again and by now she's kind of sitting up in bed she's she's looking at him her eyes on his eyes she's she's nodding she's stroking his hand and I'm sitting on my stool thinking oh yeah that that is what happens you know how come I've seen this hundreds of times and I've never noticed that before and so okay so he's explained to her that she's going to be unconscious so she doesn't need to worry because you're not going to be overwhelmed by pain we can go now can't we and he's still going and I suddenly realized oh my god he's going to the last breath so he says you know there's periods where we see people are breathing quite fast but it's quite shallow and if their families haven't seen that before they might think that they're you know panting breathless working really hard to breathe so if your nieces and nephews are here we'll explain this is normal breathing and people who are deeply unconscious and you're completely safe and they don't need to worry about you and and sometimes breathing is slow and deep and it's through the back of the throat where the voice boxes and people don't feel the back of their throat anymore so they might make noises as they breathe families worry that the person's trying to speak or they're groaning and uncomfortable so again if that happens we'll explain to your nephews and nieces you're completely safe that this isn't distress and then usually in the middle of the night you're going to be feeling a little bit one of the slower periods of breathing, there'll be a breath out. And he looks at her and she looks at him. And there's this pause and he says, it just doesn't have another breath in after it. It's as gentle as that. There's no sudden rush of pain, feeling of fading away, no panic. It's very, very gentle. And you can see she closes her eyes. She drops her shoulders. She's still stroking his hand, but she lies back on the pillows. And she says, thank you. And I'm sitting on my stool thinking, oh God, what just happened? That has exploded my mind. She kind of waves her hand, waves her fingers in that dismissive way of, you know, okay, you've done your job now, off you go. And as we're walking down the corridor, I was too overwhelmed to speak. I'm sure I was probably crying. And what was happening in my head was two things. One was, I have watched hundreds of people dying, but it was my job to stop them from dying. So I was so busy thinking about their oxygen levels and their hemoglobin and what their kidney function was like. What was their heart rhythm? That I hadn't just kind of taken one step back and looked at the global thing that was happening to recognize it. But as he'd been describing it, it was just coming to life in front of me that, yeah, I have seen, he's absolutely telling the truth. I really recognize this. But I think the other thing that was even more astonishing, and it's the reason we're talking to each other now, was that understanding that not only can we understand and describe this process of dying, but we can describe it to a dying person and it's consoling. That's amazing. We can give people that, that gift. And what's gone on in my career, so that was, I don't know, 1986, so a little while ago, is that I've gradually learned to have that conversation with patients, with families, with worried people on a bus. You know, it's relevant anywhere. And I always remember to say, like he said, look, if this gets too much, you just say and I'll stop. And nobody has ever stopped me. But at the end of it, there's, there's always that moment of like she closed her eyes and she relaxed and she said, thank you. Usually it's that kind of pause. And then that's just not what any of us is expecting. Will you tell my people? She had no people left to tell. But, you know, will you tell my kids? Will you explain to my spouse? Will you tell, will you tell my parents? Because they need to know that because they're so worried. And if that's all it is, I think we can manage that. And I realized that when I qualified for medical school, I was 23 and I knew all about saving lives and nothing about dying. When my Nana was 23 in 1923, so she'd been a teenager in the 19 teens. She was so familiar with looking after dying people because she and her sisters and her girl cousins would have been told by her mom and aunties how to look after them. She would look after people, steered them through the process, explained what was going on, what to expect next. She knew it inside out when she was 23 and she knew it by seeing it, by being up close with it. So I realized that if there was a way of giving it back to people, they had to see it, had to see it in their minds as though they were there. And the way you help people to do that is that you tell them completely captivating stories. So they feel as though they've been in the room. And that's how the book was born.
Speaker 2Catherine, has anyone ever told you that you're an amazing storyteller? Like I was just captivated that whole time. It's, it's a beautiful story and it's such an important reminder of the importance of being real and open and having these conversations about the realities of death and dying and how often we just shy away from it because we're so afraid of it. We often don't, we don't have the right language to use and we use euphemisms to try and sugar coded. I think it's just such brilliant work that you're doing. And I'd love to know, are there any other common signs that you see from people who are approaching
Speaker 3that time? I think it's really helpful for people themselves and the people who will be supporting them, the people who will be their companions to understand the kind of total pattern of things that might happen a little bit like when we're pregnant and we do preparation, we do preparation for labor, right? And we make a birth plan and our midwives and our obstetricians, they're really good. They don't laugh that we've made this idealistic plan, but they say, okay, and if we can't do it this perfect way, what's plan B and you know, what's the room for maneuver here? I think we need those conversations about dying because a little bit like labor is the same process every single time. It's individual because of the person. Dying is the same process every single time. So in that phase of coming in and out of being awake, there are periods for some people, particularly people where their illness is making it more difficult for their brain to kind of think in a straight line. So maybe people who are taking drugs that have sedative effects, some of the drugs they take for nausea, some of the painkillers sometimes can be a bit sedative. Or people whose organs are slowing down liver or kidneys can also make it a little bit harder to be completely oriented when you're awake. So you get this sense that all of us have had, you know, when you're deeply asleep and then the alarm wakes you up and before you completely wake up, you're in a place where in your sleep and in your dream, the noise of the alarm becomes part of the dream. So you can hear it in the real world, but you're responding to it. In your dream state. And then gradually you realize that actually, no, it isn't that you're in a shopping center and the fire alarms are going off. You're actually, that's a much more familiar noise. Oh no. Okay. I'm actually in my house because those are my curtains. And oh yes, the alarm clock. And now I can switch off. So that, that moment, maybe it's perhaps only lasts a few seconds, but that sense of being in two worlds at once, a dream world and the real world, that's what sometimes we see when people get muddled and we call it delirium. And because the person seems to be talking, but they're talking about stuff that other people in the room can't see, or they're talking about stuff as though it's happening. Now that is either stuff that's in their imagination and dreaming, or it's memories from long ago. That's normal. It's okay. They're safe. It often isn't frightening them. Sometimes it might, it might be a bit frightening because in their real head, they know they're dying. And in their dream head, that's becoming dreams about things that might kill you because that's a sensible dream to have when you know that you're dying. So there might now suddenly become afraid that the ship that they're on is sinking, for example. And we need to respond to that by helping them to orientate and by giving them calm messages. So if we get anxious and our voice is not clear, our voices get all squeaky and we start to talk really fast. Oh, no, no, mom, it's okay. They hear that panic and it feeds into the dream state and it winds it up to be more frightening. So knowing that sometimes your person might be confused and that confusion is okay, and it won't wind up to be kind of total axe-wielding madness. It will just be periods of being gently confused. And our response to it is, that sounds a bit scary, mom. Do you want a cuddle? Shall we have a cup of tea? The sun is shining. dad it's actually it's three o'clock in the morning and the kids are in fact all asleep so if you could just help me keep the house nice and quiet for a few more hours that would be really helpful so we're responding in a calm and orientating way I think that's really helpful for people to know towards the very very end of life people aren't hungry they are often not thirsty and we because we feed people to show them we love them that causes families lots of distress and it's really really helpful for families to understand that this person is not dying because they're not eating they're not eating because they're dying and they're in their intestines are also dying they're slowing down they're not feeling hungry you put food in there it kind of sits in your tummy like this big lump of discomfort a bit like when we've overindulged you know Christmas dinner springs to mind where you really just shouldn't have had that last roast potato but you did and now you regret it that feeling of everything's a bit too heavy so helping people to have just tiny portions and the idea of tastes for pleasure what do they really love and can we give them a teaspoonful of that just for the gorgeous taste of it so it stops families from being helpless that they can't do anything but it stops the person from being you know that awful feeling of sitting with a plate of food in front of you that you know everybody's loved you and you're not going to be able to do anything but you're going to be able to do enough to make it and you just can't face it so tiny tiny tastes and then towards the very end of life people's muscles start to relax and this is important because it's one of those kind of staging posts that tells us okay we're getting quite late on in the process now we're getting closer to dying now so maybe you're picking somebody's arm up and it's a little bit floppy but the thing that people notice is that people face starts to change so your cheek your cheeks are plump because they've got muscles there and as they relax you start to see the person's face looks a little bit flatter somehow and very often people say you know as my mum was dying she suddenly lost 10 years she lost 20 years she just looks so much younger as those muscles relax they're the muscles that tether your skin and make your wrinkles and because they're relaxing all of your wrinkles iron out which is a kindness of death thank you um and also to how do we do this in real life eyes closed takes muscle power so sometimes as people become deeply unconscious and their muscles relax eyes start to lie half open a family says well is he awake or is he asleep well he's neither he's unconscious which isn't either of those states um we know that the unconscious brain still registers sound so keep talking to it and it's going to be okay and it's going to be okay and it's going to be okay and it's going to be okay and it's going to be okay and because the your familiar voice and calm in your voice is important in this room right now but don't worry about the position his eyes in it's not telling us anything about his level of consciousness and also people's mouths can sag open because the jaw muscles relax and that's normal too and in a really relaxed mouth even the tongue will loll out over the lips a little bit it's not your best look so perhaps important to help you know kids and grandchildren to know to expect that and also i think it's really helpful for people to know that after a person's died their muscles quite quickly become fixed in position only for a day or so that wears off again at the other end so if they've died with their mouth open and you can't close it now you will be able to close it in a couple of days time if you haven't decided to keep them at home for that length of time your funeral will be over people will be able to close their mouth but it's important to know because i met somebody once who saw a beloved relative dead with their mouth open and their misunderstanding was that the person must have died screaming that's why their mouth was open absolutely not they died completely relaxed with their mouth open so it's really important that we understand and that we say the words that explain to people because if i can't close my mouth i'm not going to be able to close my mouth if i'd taken that person into the room to see their relative i wouldn't have thought to say you know his mouth isn't open because he was screaming right because that thought hasn't even entered my head so it is really important that we get people to ask questions and we tell them what is happening so they don't imagine you know our imagination fills the gaps in our knowledge doesn't it and that when we always imagine something that's more terrible than what's actually been happening to the person
Speaker 1communication is so important when it comes to these situations and like you've just explained so beautifully plays a really key role when dealing with interpersonal relationships or dealing with the person that's dying what advice do you have for listeners who maybe have a family member who is dying but but doesn't want to face it or maybe they've got family members who are in disagreement or are coping differently do you have advice on how to mitigate these challenges oh
Speaker 3do you know what every family that i've helped to look after down the years at some point has had this kind of sense of you know you know every other family is balmy but you think yours is great and then suddenly you discover that oh god my family's balmy too because all of those little idiosyncrasies that you just kind of rub along yeah there's the big detail sister and then there's the wide picture brother suddenly they're driving each other nuts because she's got check sheets and timetables and it's not your you know we've got a rotor for visiting why are you here now it's not your turn and he's going well you know i was passing and it's lovely and i just thought i'd stick my head in so everybody's doing their best everybody's well intended but everybody's doing it their way and because you're all a little bit sad and and a little bit anxious a little bit edgy you're less able to put up with each other's differences so the first thing i think is to just realize that we're all a bit tetchy and that's normal and that's okay and how can i catch people doing things right instead of catching people doing things wrong so it's really helpful if families have sat down to think about it a bit how are we going to cope with this what's what are the what are the bits of this that you're most dreading oh that's interesting because actually i think i'll be all right with that bit the thing that i'm really not looking forward to is is this okay right now we're starting to understand each other so just recognizing and being able to be amused by the differences between them instead of irritated can be really helpful and sometimes it's helpful just because you've named it and also to be grateful you know to the details person who's writing the rotas because it might be driving you nuts that she's checking the rotas and she's checking the rotas and she's checking the rotas in the morning by text that you're going to be there on time but she's doing that to the brother who probably wouldn't have been there on time unless she'd done that as well and she's just doing her best so let's just remember that we're all doing this usually because we love the person i think it's important to say that we don't always love our dying person that some families have got very difficult relationships and they are there because they know it's the right thing to do but they're not there out of love for their dying person but they may very well be there for love and solidarity with each other and perhaps naming that being able to say that i you know i'm finding this hard i'm being as kind as i can but he was an abusive father and it sticks in my throat a bit that we're all pandering to his whims now somebody else said thank god you said that because i thought i was the only person thinking that and i felt like i was being so mean it's okay we can we can do hard things and we don't have to be motivated by being dear to that person but we can be motivated just by knowing that this is this is the thing that i'll feel satisfied by having seen through afterwards i can do it for me even if i can't do it for you so i think helping families just to talk aloud just to be able to say what it is and how it is and that everybody's different let's just be grateful that we're all here for whatever reason and in whatever way we can be you asked about the person who doesn't want to talk about it doesn't want to believe that it's real so the first thing to say is that absolute denial is pretty rare but when it does happen it's absolutely the psychologically safest place to be if you don't believe it's happening then you don't have to do any of the worrying and upset the difficulty is that a lot of people who's who psychologically use denial which often isn't something they've chosen it's just that's the way their mind is coping for them every now and again they flip into oh my god this is really happening isn't it and then they're really frightened because they're not taking the time to do the processing that a person who doesn't escape into denial will do so sometimes we have to be prepared to be alongside and soothing during the periods where they can't escape into denial and just remind them that people have been dying safely since the dawn of humanity and we can help them we can't stop them from dying but we can help them to be safe and accompanied all the way through it and sometimes people do denial to the very last moment so there's a story and with the end in mind of a young woman who was you know choosing names for her as yet unborn children and planning their next year's holidays oh you know before she lapsed into unconsciousness as she was dying and her family were able to get to understand that that was the only way she could stay calm and so they couldn't say goodbye to her but they did bring in all the photograph albums and they did so her parents and her husband sat with her went through all you know this is this is you when you were in the i don't know the girl guides and this is you when you were um camping with the school and oh do you remember that really weird phrase that you had but she was quite kind wasn't she but a bit mad um and oh you were you were so lovely you were so kind when you were a teenager these are the things we loved about you and then you met john and you brought him into our family and we loved john as well and your wedding day happiest day of our lives so they did all this reminiscence all of the things that they wanted to say thank you and you know yeah i sometimes when i was a mom i got it a bit wrong and i feel bad about that and i'm sorry and i hope you forgive me um and sometimes you were a grumpy teenager and don't worry about that because you know it's all water under the bridge now and we love you we love you we love you because those are the messages thank you i'm sorry please forgive me and i love you that we hear over and over again they seem to be the important things so even though they couldn't say goodbye they did the kind of life review that says you are absolutely held in our
Speaker 1love wise wise words katherine and last question from us talking about death and dying and grief it's all really really difficult having tender conversations it's not easy what advice do you have for talking about this difficult stuff yeah i
Speaker 3it's a great question isn't it and i think part of the difficulty we have is that we badge them difficult conversations in our heads and so we get ourselves ready to have a difficult conversation right and getting myself all tensed up and that's why my one of one of my one of my weapons for campaigning is stories but the other one is the word tenderness that actually these are tender conversations and if we reveal our vulnerability and we allow our tenderness which is the thing we're guarding against that makes it become difficult actually somehow it's just a different conversation so remembering i'm not in charge of it i'm inviting you into it i think is is a really good opening step dad i'm worried that i might not know the answers if you're not well enough to speak for yourself and the doctors ask me what you want you know that really worries me sometime when you feel you've got the energy for it do you think we could just talk that through just just a bit okay so it's an invitation now i'm not infantilizing my father so now come on dad it's about time you talked about this stuff which is absolutely going to make his him dig his heels and are you kidding me this is the person who taught you to use a spoon you can't talk to them like that so and the same for for our brief family and friends to be able to just issue the invitation i heard that's whoever it is i heard they died i'm so so sorry okay so going into a you know i know i'm preaching to a choir talking to your lovely listeners that we can't make bereavement any better there is not a magic formula of words that i can say that's going to make this better for you so i don't have to search for those words i don't have to wait until i found the right words there aren't any right words but i can say i heard and i'm sorry and you might not want to talk about it right now but if you do then is my number in your phone do you want to check um do you want me to put it in for you because all of us know when you're bereaved you kind of your brain fries a bit doesn't it you think you've put the right number in and you haven't when you try to call the person i don't know you get the you get the chip shop instead so that real offer of like here's my number on a piece of paper or can i put my number into your phone or um the neighbor thing of who's cutting your lawn for you since he died who's cutting the grass shall we do that when we do wild grass we just nip over and do yours as well um i'm going to the supermarket now are there you know a few things that you need that i can bring back for you or you know i'm in the supermarket calling from the supermarket i'm in the supermarket right now i'm going to be here for 15 minutes have a little think if there's anything i can bring back for you just let me know and it's because people say to us when we're bereaved you know anything you need just let me know and they don't seem to understand until they're bereaved themselves that thinking about what i need takes more energy than i've got whereas if you make me an offer i can say yes or not today and there's something protective about being bereaved in that it's okay to say no when somehow in the rest of our lives maybe we're not very good at saying no to people our energy is so bad we're limited we know we've only got a little bit that's really lovely of you but no thanks it's okay so there's something about bringing our tenderness not being afraid to be with this person at the point that they are distressed because they are dying or they're distressed because the person they love has died and then hanging on in there because that person is dead now forever they're not going to be better in a week or a year it's not like measles you know they're still bereaved and just remembering and one of the things that people tell me is lovely and that i've subsequently discovered myself is lovely is the random message that you get is just i was somewhere today and this thing happened and it reminded me of that time when and they tell me a story about my bereaved person and it's like we're giving them a little bit of that person back for a moment and bereaved people find that really lovely that you're giving them that thing but also that you remember their person you're using their name how many times have you heard somebody say nobody ever says their name anymore so talking about them using their name remembering the daft things the lovely things the irritating things that somehow do become funny in retrospect um just yeah remembering them keeping them in our in our village even though they're not living members of the village anymore the village is the way it is because they've always been part of it
Speaker 2catherine thank you so much for sharing all of your wisdom with us i could listen to you talk for hours and i wish we had more time thank you so much for the incredible work that you do and for sharing this time with us we've learned so much and i know that this is going to be a very valuable conversation for our listeners you well thank you both so much
Speaker 3for inviting me and uh have a lovely day and i'll see you in the next video lovely australian evening i'm going off out into the british morning now lovely to talk to you thank you
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