Episode 34 - An Important Conversation on how to talk to and support someone who is dying

Navigating death and dying can be a challenging for all  involved. The way you interact with the person who is dying is very important; as the last thing they need is to manage your feelings! In a continuation on our grief episode (episode 30); this episode features a candid and enlightening conversation with our guest, Linda Campbell, an experienced hypnotherapist and end of life doula, who helps us explore this often-taboo topic.

First off, we tackle the discomfort that our society often feels around death, and how this shapes our interactions with those facing their own mortality. Following this, we delve into the delicate dynamics of communication with someone who is terminally ill and the need to focus on the present, respect their decisions about care and treatment, and provide them with an opportunity to express their feelings. 

We also discuss ways to support friends dealing with terminal illnesses. It's also important to remember to include them and treat them like they're still here; because they are! This episode is a reminder that death is a part of life; let’s embrace, and learn how to have these important conversations.

I talked to Linda about grief in episode 30 which is available here: https://www.buzzsprout.com/2142323/13524417

Linda's websites:

WalkingWithYou.com.au

MindMastery.com.au

Learn more about Fiona's speaking, radio and consultation services at Informed Health: https://informedhealth.com.au/

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Credit for the music used in this podcast:

The Beat of Nature

Music by Olexy from Pixabay

Transcript

Fiona Kane: 0:31

Welcome to the Wellness Connection podcast with Fiona Kane. I'm your host, Fiona Kane, and this week I have a returning guest. I have Linda Campbell. You would have previously heard her in episode 30, where we talked about grief and different ways of dealing with and talking to people. In regards to grief, this time we're going to talk more about people who are dying, so their process, what's happening for them as opposed to what's happening for the people around them. So welcome Linda. Good morning, Fiona. How are you? I'm well, thanks today. How are you? I'm fine. So, for those who haven't listened to or watched episode 30 yet, just do a bit of an introduction to who you are.

Linda Campbell: 1:18

Okay, so I am a hypnotherapist, but I'm also an end of life doula, so I work with people who are dying and their families to help them through that transition.

Fiona Kane: 1:31

Okay, important work, very important work. So one of the we started. Well, we've talked about this a lot in the past, but one of the things that really came up for me a few years ago and we had a discussion around this at the time is there was a Facebook post of there was a famous. I think I might have mentioned this in the last episode, I can't remember now, but there was a famous. I think he was a golfer and he was quite a young man and he had sort of pretty much very limited time to live, maybe weeks or whatever it was and he did a post on social media and said something along the lines of you know, this is my last post, I'm going to spend time with family and friends, blah, blah, blah. Whatever he said, but it was just a very final, you know post.

Fiona Kane: 2:21

And there were people replying to it with things like oh, hang in there, you never know science, don't lose hope. And I found it really jarring. I just kind of thought, like what planet are you on? Like so not okay. And our culture, I find, is just so not comfortable with death, including me. I haven't been around it a lot and I'm getting more comfortable with it because I'm getting more used to it, but I've been growing up. I've grown up very sheltered from it, so you know what's your, what is it, what are your thoughts in regards to that? You know that social media posts and the way that people were responding to that.

Linda Campbell: 3:04

I think it's terrible, really, if a person has accepted their own death, you know, telling them to fight. That's one of the things that really gets under my skin, actually, that language of fighting and illness. Yes, because that then implies that if you don't fight, you're a coward or you're a failure.

Linda Campbell: 3:34

Yeah, if you pass away, then you didn't fight hard enough, apparently, yeah you know, yeah, it's the wrong sort of language, but nobody has the right to tell anybody else to hang in there, because we don't know what pain they're in, what suffering they're going through. If they've accepted that their death is imminent, that's up to them. And you know, families do this a lot as well. My mum did it with my dad. She kept saying to him don't leave me, george, don't leave me George. You know, and it's like, yeah, bone cancer. He was dying. There was nothing that anybody could do and he was in a lot of pain. But yeah, that, that language and that begging the other person to keep going, that's about the person who's saying those things.

Fiona Kane: 4:39

Yes, quite about your discomfort, actually. Sorry, what was that? It's a selfish response.

Linda Campbell: 4:45

Yes, it's only thinking about themselves, not about the other person and what they're going through.

Fiona Kane: 4:53

Yeah, it's about your pain or your discomfort or your unwillingness to talk about a certain topic and that whole, that whole thing, the be positive thing too, as people think that they're being kind of positive if they're saying, hang in there or all that, there's great science, technology, whatever. And it's actually I think that's what I have seen, and I'm sure you've seen this as well that when people are dying, the people around them really the people around them who they can really talk to narrows down quite significantly.

Linda Campbell: 5:31

It does.

Fiona Kane: 5:32

And for that exact reason, because they can't actually have real conversations with those other people. And if you are constantly having to carry the burden of other people's discomfort around what's happening to you, it's like, oh well, go away. You're dealing with what's happening to you already and then you've got to dance around and pretend and smile and for somebody else's sake, that's not acceptable. To expect the person who is dying to deal with your discomfort, to have to manage your discomfort as well or to live in your kind of pretend universe that you need to have. And that is exactly why I think you see that people sort of drop off over time because the person who's dying they do not have the energy for that and they do not have time for that.

Linda Campbell: 6:27

That's right, that's exactly right. And I, coming back to the language for a moment, I mean I'd describe myself when I said an end of life d oula, that I work with people who are dying. The truth is we're all dying. Yes, From the moment we're born, we're all dying.

Linda Campbell: 6:51

It's, it's some of us are going to die and some of us are going to die, but we are all dying News flash and it's about, really, I should say I've worked with people who have a terminal illness because people are alive until the moment they take their last breath. Yes, and because we have this whole thing around dying, we start to treat people differently instead of remembering that they're still the same person. They're still alive.

Fiona Kane: 7:26

Yes, yeah, definitely, and I think even even things like if you feel like I know that if someone around you is dying, you feel like you can't, you know, burden them with anything that's in your life or whatever it is, and and I think there's a balance there, there's a time and there's a place. But I think, early on, maybe, when people are well enough to still have their friendships and still want to talk to people, I think that they might feel sad to think that their friends can't share with them.

Linda Campbell: 8:01

That's right. I think one of the things, if you're going to go to visit somebody, or you you've met somebody who's got a terminal illness, is to share what's happening in your life with them. Yes, include them in your life, yes, so that they know that they are important to you. Yes, yes, rather than excluding them because you don't want to, because your problem seems so little compared to theirs. Yes, yeah, yeah, exactly, but just just including them will give them a sense of importance to you.

Fiona Kane: 8:44

Yes, and also, like you just said, that you're alive until you're not, so why suddenly start treating someone like they've already gone before they have? You know, and it's also you know, it's not the other end of the thing where you just go and dump on them and dump on everything, every bit of your problems and every bit of your, all of your issues, and expect them to carry the weight. It's not that, but it's just simply, you know, if that's your friend and you'd normally talk about, you know, oh, that person at work today, oh, they're thinking the thing whatever, or a decision you're trying to make, or something like that. And I think that you, I think you naturally know when that starts to get harder for the person, or they just not able to have those conversations anymore. But I think until then, I think you know just the same as you always would just have those conversations treat that person like they're still here and alive because they are.

Linda Campbell: 9:38

Yeah, yeah. And another thing, like I asked you, you know, I said how are you? When we started this? Yes, that's one that you should avoid, I think, with somebody who has a terminal illness. Yes, rather, say something like how are you feeling today?

Fiona Kane: 9:57

Okay, yeah, make it more about present.

Linda Campbell: 10:01

Yes, make it about the present moment? Yes, because how are you?

Fiona Kane: 10:07

Well, they're dealing with the fact that they are no longer the same.

Linda Campbell: 10:11

That's it. But how are you feeling today? Because they will have days where they feel fine, yes, or reasonably fine, and they will have days where they feel really down and depressed. Yes, giving them that opportunity, bringing them into the present moment and giving them an opportunity to talk about their feelings. Depending on the relationship that you have with that person, they might be able to open up about how they're really feeling.

Fiona Kane: 10:41

Yes, and there's not many people, you know, in my experience there's not many people who will actually hear that. So that when I think it's a very, it's very isolating. I think when people, when they're in that situation, like, it's very emotionally isolating because if you're propping up everyone around you and smiling and pretending everything's okay and you can't actually say to anyone well, you know what, ashley, you know I'm terrified or I'm in pain, or I'm overwhelmed, or I'm really angry or I'm sad or like whatever it is. You have to be able to have those conversations and I think it's important again to understand if you're having that conversation with someone, you don't have to fix it. They don't think that you're going to somehow fix it. They just need to be real with somebody.

Fiona Kane: 11:32

Yes, you know, and I think that we underestimate this letting someone be real, that's all they're asking for. They're just saying I can need to be able to be not like, because it's so much energy, just even in general life. It's a lot of energy if you have to put on a facade or pretend or prop other people up, but I can't even imagine what that would be like when you're dealing with, you know, end of life situation, which often is debilitating and tiring and all of the other things. The last thing you have is energy to just be on the whole time and pretending so you know that sort of being that person that they can be real with and say, well, you know what. This is. My question, that's right.

Linda Campbell: 12:16

So I mean, it's about letting them control the conversation. Yes, and again, that's important because when you're going through a terminal illness, there's often a feeling of things not being in your control. Yes, especially if there's been lots of medical interventions that the doctors take over. Yes, yes. And yes, you have the choice, but often people just go with the flow. If a doctor says this is what we do, this is what they do. So people often end up feeling like they've lost control of their lives. Yes, yeah, so just let them control.

Fiona Kane: 13:05

The conversation can help restore some of that feeling of control, Well, just having that sense of agency, and I think that goes even further. So for starters, it's like you were saying that them control the conversation.

Fiona Kane: 13:18

So there are some people that do want to talk about the weather and actually don't want to talk about anything else that's right, and if that's what they want to talk about, fine, yes, just become an expert on the weather, you know, that's perfectly okay. They're allowed to avoid the topic, not talk about it, not want to talk about it, that's totally up to them. On the other hand, though, if they do want to talk about the topic, they don't sort of oh no, you'll be okay, oh, you don't brush it off and talk about the weather, because they're actually telling you they need to talk about it. So it goes further with the agency, I think, too, in regards to so someone's maybe received a diagnosis, or they've, you know wherever they're at in their journey.

Fiona Kane: 14:01

But these people like, sometimes they might want to I don't know do a special fast or go to a retreat, or they might want to not do any of that, and then they want to do chemo, or they might, you know, have decided that you know what they've done that up to a certain point they don't feel that it's worthwhile. They're going to feel terrible, they're going to feel bad enough. Anyway Don't want to do chemo, whatever it is. But I think that people need that agency to be able to make those choices. So I think that's the other thing too you can maybe talk to them about them and help them and have discussions with them, but I think ultimately, let people have the agency to say actually, you know what, I know, I have limited time left and this is how I choose to do it.

Linda Campbell: 14:48

Yes, I think that's really hard for some family members as well. I once worked this was as a hypnotherapist, actually not as an end of life do-la I once worked with a man. His family wanted him to come and see me. They wanted me to persuade him to carry on with treatment, whereas he had bowel cancer. He'd had enough. He had accepted it was a very aggressive form of cancer. He had accepted that this was the end for him and his family wanted him to keep on fighting that language again. And they weren't listening to him Exactly. So, yeah, he was tired. He was really, really tired of all the interventions and all the therapy and he just wanted to let go.

Fiona Kane: 15:52

Yes, and it doesn't mean that you can't have those discussions with your loved one, and of course, we want people to still be here and we want all of those things. But I think there's a point in the discussion where you have to understand that that person has made a choice, so fair enough to say, well, how about this or what about that, or even just the things of you know, like some people, when they go through things like this, they want to read books and they want to learn about a thing and they want to become an expert and whatever, and other people just don't want to do any of that, you know. So it's kind of it is okay to have conversations with people or to, if they want to chat about options and things like that and what do you think, and whatever else. But I think then it is also we need to accept that people have a right to have agency and make their choices, no matter how hard it is for you. That acceptance that, okay, that's your choice. Okay, let's do that.

Linda Campbell: 16:52

Yeah, and I think in some ways. Well, I know our culture does not deal with death and dying very well at all.

Fiona Kane: 17:04

No, no, no, we don't.

Linda Campbell: 17:07

We almost. It's like we pretend it's not going to happen. Yes, we do. And then when somebody is diagnosed with a terminal illness, some people still are going along thinking it's not going to happen. And that can be the patient as well. It's not all people come to an acceptance of their own mortality. Yeah, Most will do, especially once they've got a terminal diagnosis, but some won't. I guess that, yeah.

Fiona Kane: 17:42

Yeah, and I think that they're allowed to as well. Exactly, I mean, we're all going to get there at some point, unless it's really sudden and we don't have time to think about it, but otherwise we're all going to have that point and I think that we it's respect people's choice to be as open and talking about it. And you know, like I know, my one of my grandmothers, so one one grandmother was like don't talk about it, we don't, you know. And the other grandmother was having. She had a picnic at her grave site where she was going to be, and she, she wanted to do that because she wanted everyone to see where it was. She wanted people to get used to the idea of coming to visit her at a grave site, right, and I know my aunt chose her her site, whereas my mother didn't really want to do that. Then she kind of ultimately wanted to be with her sister, but she, she, she couldn't have gone there.

Fiona Kane: 18:39

and to the cemetery and chosen it, whereas once I chose a spot for my mom I've actually chosen a spot next to mom because I thought, oh well, what else am I going to be? I may as well just be next to mom, you know. So I, when I come and visit mama, it's like I was like hi, mom, it's like hi, future home. It's sort of weird. So that's that's some people. That's really crazy and weird, and other people that's just really normal.

Linda Campbell: 19:04

There's Graveyards in Europe. I think in Belgium is one place where they actually have barbecues and picnic areas in the Graveyards, because people will go and spend, you know, somebody's birthday or a christening or something, and they'll go to the grave of Grandma or whoever and they'll have a celebration there and they'll do things like pour wine on the grave so that the person can have the wine.

Fiona Kane: 19:34

Yes, yeah, I think I think my cousin did that recently he's my other cousin, his brother's grave, I think he poured some like a bourbon, took a bottle of a can of bourbon or something and poured that yeah mate, here's your drink. I've seen people do that a bit, actually at the cemetery that my mom and my cousin are both there, so I've been there a few times and they leave them a can or something, you know, and I think that's like look, the other thing too is that even with the sort of going to cemetery or not going to cemetery to visit people, I think it's okay. You're like if you don't want to go, that's fine, and if you want to go, that's fine. But yeah, I think, getting back to the person who's in a situation where it's the end of their life, what would you suggest are the things that people could sort of have an awareness around of how they could maybe support that person who's coming to the end of their life?

Linda Campbell: 20:37

Support the carer, who's the person who's actually caring for that person, the person who's approaching the end of their life. They will need support. So that's one way that you can do it. It's supporting that person to give them what they need to be able to cope with what's happening. Don't ask, don't say if there's anything you need, just call me. Actually, do things you know, say cook something and take it round. Or phone up and say I'm going to the shops, do you need anything? What do you need? What can I get you? The practical stuff like that can be really, really helpful because as it gets closer to the time that the person is actually going to leave the people that are caring for them and their friends and everybody they're starting to go through grief, anticipatory grief, so parts of their brains are going to not be working properly. So just giving them some practical help in various ways can ease some of that burden for them.

Fiona Kane: 22:08

Yeah, definitely.

Linda Campbell: 22:10

And keep visiting the person who's got the terminal illness or keep inviting them to things, Even if they can't come. It helps them to feel that they're still remembered and still included.

Fiona Kane: 22:26

Yes, yeah, getting back to that, not treating them like they've already gone yes, yeah.

Linda Campbell: 22:33

So if you're having a party for some reason, invite them. They may not be able to come. And again, obviously I'm talking about before the last few days, when they're in a coma or whatever. But if they're still ambiliterary and with it, invite them. They may not feel like coming because they may not want to spend time with a bunch of people having to pretend that they're fine, which we tend to do when we're with a larger group. Yes, but at least include them and let them know that you're remembering them and you're thinking about them, because, as you say often, it's yeah, kind of don't want to, we don't want to face it, but that's our discomfort.

Fiona Kane: 23:31

Yes, yeah. And the other thing, too, is that they might want so the person depending on how close you are and where you are in this situation but that person maybe they might want help with things like they might be writing letters to their children that's right, they might want help with that. Or they might want to give them to you for safekeeping or whatever it is. Or they might want help organizing a solicitor to sort out their will and their guardianship and all of those kinds of things. They might want practical things. All they might want is you to take them to the cemetery, all the things. So they might want a whole bunch of that sort of stuff. That's right.

Linda Campbell: 24:13

The other thing would be asking them if they want to go through photos and getting them to tell you what the photos are about and maybe writing on the back of the photo who's in the photo? Yes, you know that, recording their memories in some way.

Fiona Kane: 24:31

Yeah, I noticed that for my mother, who wasn't she didn't she had moments where she could talk about the fact that she was dying, but sort of but not really, but sort of. It was a bit strange, but anyway, it's just her way. But what she was saying, what she did say a lot of the time, though, was is there anything you want to know? And I could tell what she was trying to do. She was sort of saying, well, I'm not going to be here, what do you need to know? What are the questions you have? And it was that sort of thing. It's that kind of when we did go through some photo albums and things, but it was that needing to pass off all the information, because she knew that she had a limited time to do that.

Fiona Kane: 25:13

And Mum actually did choose the songs for her own service. Yep, she wanted to do that, so she did that. But there was a lot of things that she didn't want to do and she didn't want to talk about and we didn't. But then she made very specific things that she did want to talk about and she would say to me I've changed my mind. I've changed my mind about that song, go watch this song instead. So I kind of had this file on my computer and I'd sort of open it up and I'd sort of change it up and say, okay, so we'll make that number three and we'll put that one into like supplementary songs or whatever it was. So she would say to me, oh yeah, I've changed my mind. So she'd be thinking about it and the next time I saw her she'd tell me. And that was really good actually, because it made it much easier for me afterwards because I didn't have to think, oh, which one? Or you know. So that was great. But I just went with her and there was a couple of moments where, sort of right at the end, where she did bring up a couple of things about like some of her fears around what might happen, and we talked about that and very briefly, but I was just, you know again, I just was really respectful of her where she was at, and then most of the time she didn't want to talk about anything.

Fiona Kane: 26:31

And the other thing that you know again, include people, because what you can do is you can be, you know, like we were talking about before go around and talk to them about the family oh well, so-and-so has got a new boyfriend and you know the kids are doing the HSC at the moment. Whatever is happening include them. But you know, the other thing that Mum and I did is we sang songs. Like I would get my phone and play a song and you know we were singing things like Maggie May by Rod Stewart, go figure, it was just a song that we both knew and we both knew most of the words or whatever.

Fiona Kane: 27:11

But you know we'd sing a couple of songs and you know it's just kind of just being present with someone, and sometimes it's just being present, seeing quietly, sometimes it's listening to music or it might be going through photos or whatever it is. There's a lot that you can do. It's kind of just being present with someone and treating them like they're still your friend that's right, you know whoever they are and not acting like they're gone because they're not.

Linda Campbell: 27:41

They're still there, yeah, and that's again it's. I think it's hard for some people because it's about they're then forced to come to terms with their own mortality. When you're spending time with somebody who has a terminal illness, it kind of forces you back to look at the fact that you're going to die someday, exactly.

Linda Campbell: 28:12

I think that's where people's fear comes in. One thing I did want to mention is don't assume a person's spiritual or religious beliefs, because that might change the closer they get to their own end of life. Somebody who has not set foot in a church or been religious at all may want to speak to a priest or a minister pastor, so that again it's about allowing them to control that and not judging them for that. Yes, yeah, you know, don't go. What do you want to talk to a minister for? You've never wanted to before.

Fiona Kane: 28:58

Yeah, Exactly If that's what they want.

Linda Campbell: 29:01

If that's what they want, that's what they want, that's what they need at that time. Yes, yeah. So if a priest or a minister or priests have been around a lot of dying people, a lot of people at that end point, so yes, whatever that person needs, because it's well.

Fiona Kane: 29:26

Everyone's got a different opinion on this, but I kind of do believe that we have a soul and we need to make I know amends might be the wrong word, but we need to settle certain things or often we do and so people will make different choices around what that looks like for them, and so just being really respectful of that, that's that person's process Absolutely, and whether that's like don't let the priest in, or I need to see the priest, or whatever it looks like for them, that is perfectly okay for them.

Linda Campbell: 29:59

Yeah, but the last podcast that we did, I mentioned Elizabeth Kubler Ross and the stages of grief, the five stages of grief.

Fiona Kane: 30:13

Yes.

Linda Campbell: 30:15

Which is denial, anger, bargaining, depression and acceptance. That was the original five stages. Kubler Ross based that on working with people in a hospice and it was all about accepting their own diagnosis and their own death. Yes, so recent research is showing that it's not even with people that are dying. It's not that process completely. There are some other stages and some people may not go through it. But it's a useful model especially if you're working with somebody or caring for somebody who has a terminal illness to recognize that they will go through different stages. Yes, yeah, there might be a day where they're feeling angry angry at the world, you know but feel like they've been dealt a wrong hand, and there might be many days or many months of that, depending on the individual and the way what's going on?

Linda Campbell: 31:29

The bargaining. You know all those stages and again it's about allowing them to go through and experience that the way that they need to experience it. Don't try and force them into another stage.

Fiona Kane: 31:51

Yeah, look on the bright side. Yes, exactly, go away, don't give up hope.

Linda Campbell: 31:55

Yeah yeah, all those things.

Fiona Kane: 32:02

If they need to be angry at the world, they need to be angry at the world. Okay, it's just a process. It's a process and I think that's a thing understanding. We don't understand that with emotions, and I think that's a whole other topic really. But we don't understand emotions and we don't understand that sometimes people are, you know.

Fiona Kane: 32:19

I'll give you an example that singer I always talk about, his name is Ren. He's got all these different kinds of songs and a lot of them he uses. It hits his way when he writes a song. It hits his way of venting whatever's going on for him at the time, and so he's written a song. I can't remember what it's called, but anyway it's quite an angry kind of destroy everything, destroy everyone, kill the world, whatever.

Fiona Kane: 32:44

It's that kind of a vibe, that song, and I heard him doing interview about it the other day because people have reacted quite. Oh my God, look how he's got other songs that really heartfelt and make me feel good, and this one's just really terrible. Oh, how could he, you know? And he said it's you know, it's not who we is, it's just him expressing that moment, you know. So it's we, sort of that person, that person who's dying and they're having that time where they're really, really angry.

Fiona Kane: 33:14

It doesn't mean that they're a horrible angry person. That means they're just processing their anger, you know, like a songwriter might, or like somebody you know. So it's funny, we kind of attach it to what has to be this or has to be that. But no, like you said, it is a process and all of those, whether they go through all of those different stages or not, they are stages, they are there for processing and then it's perfectly normal to have that and not have someone have to rewrite it for you or get you to like to sanitize it full, you know, then to sanitize it for your you know, so that you don't feel offended or you know, whatever it is. Yeah, I think it's like we try and sanitize things too much and don't understand that things, some things, are a process.

Linda Campbell: 34:02

Yes, yeah, and again, it is about letting the person with the illness control the situation and just, you know, sometimes just being with them. You don't need to say anything. Yes, and I said you know singing songs with your mum. It's just about being there and letting them know that you're there. Yes, you don't need to be doing anything or saying anything. Yeah, yeah.

Fiona Kane: 34:36

I know, even with mum when we did, we might chat about I don't know the nurses will come into the ward and they'd have like a groovy hairstyle. I was like, oh wow, look at her hairstyle. I was like, look at that. Or you know they, whatever it is. But you know, we just talk about just small talk, the same as you would if you were. I don't know if you're just sitting around in a waiting room somewhere with someone, you might do the same thing. You might just talk about oh look at that over there. Oh look at those flowers, oh look at that painting. Or we just did the same thing, we just continued that sort of discussion.

Linda Campbell: 35:09

Yeah, and the other thing to sometimes, as it gets closer to the end, to those last few days where the person is actively starting to die, it can be good for the people that are closest to them to give them permission to go Definitely, and I know that can be hard. But, like I said with my mum, she kept pleading with my dad not to leave her. Yes, and I had to take her aside and say look, he's in a lot of pain, he's not going to recover from this, he's not going to come back from this. And she took that on board and she went in and she gave him permission to go and he died within two hours. Yes, he was waiting on that from her.

Fiona Kane: 36:09

Yeah, and I've seen this in my own life and I've also. There's a hospice nurse that does lots of YouTube videos and things and I've seen her talk about this as well and sometimes people actually won't go until the family have left the room or whoever's left the room, because this is someone or the family, whoever it is. That is sort of they can't leave them, they have trouble leaving that person. So sometimes and this hospice nurse on her YouTube video recently I saw she sort of said oh well, sometimes when we realise that someone's been hanging on for way longer than you normally would, sometimes we actually ask the family to go out for a little while and because we know that person's ready to go, but they're just hanging on, and then sometimes then that they go just after the family's left, sort of thing.

Fiona Kane: 37:06

And I even did that with mum. I did give mum space, as I ended up being with mum when she passed. But I also gave her space. I said and I kind of accepted that if she went when I wasn't there, that was what she needed to do, and if she went when I was there but I very definitely verbally, even though she wasn't conscious I gave her permission and encouraged her. You know your job's done. Blah, blah, blah, you know off you go when you're ready, whatever.

Fiona Kane: 37:35

So it is true that sometimes people it's harder for them to go if the family hanging on or if people hanging on, Sometimes they want people they're holding their hand, Sometimes they don't all they need to go quietly when no one's there. And there's not really a wrong or right of it, it's just different needs and awarenesses and even things like you and I you're talking before about, like the respecting their spiritual stuff, whatever it is. I've read about a lot and also seen in my family different people having experiences with seeing their past relatives before they die, and I personally think that they are seeing them. But you know, whatever your belief is totally fine. However, if it's their belief, let them have it.

Fiona Kane: 38:25

So also, don't go. Oh well, that's not possible. It's like no, if they're seeing Uncle so and so, or if they're seeing their husband or their mother or whoever it is, encourage it, Let them, you know, because if that's giving them comfort, Well then that's amazing. So why do you need to be right? Or to you know, get out your science textbook or just let them have that.

Linda Campbell: 38:50

Yeah, lots of people that work in hospice, you know they say often the person just. Even if they're unconscious or in a coma, they have a moment of clarity not long before they die and they will often reach out for somebody that's not there. Yeah, see somebody's name.

Fiona Kane: 39:15

Yes, yeah, yeah, I know my grandfather, my grandfather's, already died. Yeah, yeah, yeah, and it's. It was quite specific. My grandfather I think it was his brother and his father were there. He said oh, there, he, he named them, you know. So, and if, whether or not that's really happening which I think it is or if it's that person, you know, their brain shutting down and they're having hallucinations, who cares? Who cares if it doesn't matter?

Linda Campbell: 39:45

If it makes sense. I mean, I'm like you, I believe that there is some continuation, but yeah, it doesn't matter.

Fiona Kane: 39:55

Yeah, Ultimately, what we want is that person to have comfort and to have whatever they need to to, to let go and to move on out of you know, into the whatever the next thing is I don't know what it is, but anyway they need that permission to do that and they need the feeling, something that if they need certain things to bring them comfort, around that, that's fine. Yeah, and I think this hospice nurse she also talks about, you know, other things, like you know, oh, they've got a special diet. They can't really eat this or that. So what you know, I know that the hospice that my aunt was in, they had a drinks trolley like a, like a bar cart, and they would wheel it around a few times.

Fiona Kane: 40:42

I think it was more than once a day, I can't remember now, but at least once a day and it's like whatever you want, you know there's a whiskey or there's a vodka or there's a whatever, and and you know, great, you know, and you don't have to do that, Whatever, but it's just there's no, it's not the time to start, you know, worrying about your diet or worrying about whether it's your drink or whether or not someone's, whatever they're doing Like it's. It's the time to just let people do whatever works for them and and brings in comfort and reduces their pain or whatever it is, and I think we we've got to.

Fiona Kane: 41:17

I think it's sometimes we've.

Fiona Kane: 41:19

It's hard, but we've got to let go of some of the things.

Fiona Kane: 41:21

And and it can be actually hard if you're the person's carer because you've learned to be really rigid around certain things, because you've had this protocol of trying to care for this person and it's you know, you've had to manage other medications, you've had to manage the diet and this and that and all the things and and you've been doing that so much, it's been so much a part of your life for so long, and it's sometimes actually hard for the carer to switch out of that mode into a more relaxed kind of oh okay, no, no, this is a different phase.

Fiona Kane: 41:51

Now I don't have to worry about that so much. And even the phase of and I think that it's important as well and obviously, look, if you're able to speak to a nurse, you know, or a doler, or you know, like you or whoever it is, but someone who understands how this works but because it can be very confusing, but there is a certain point at which the person will stop. They won't. They'll refuse food for a long, like often before they refuse drink, and then they eventually start refusing pretty much everything, and that also is a thing like we think oh, we've got to feed them, oh, we've got to make. No, no, they have a certain time where their body is.

Linda Campbell: 42:31

That's they're organs are shutting down.

Fiona Kane: 42:35

They are, yeah, and so they can't really have it anymore and they don't want it, they're not attracted to it. And again, it's a process. It's actually part of a natural process and it is normal. That's how it is. So it's also having that acceptance of you know when they choose to stop eating and you know, and the nurses and things like if they're in a hospital or somewhere, they kind of know how to manage different things and, you know, keep their mouth moist and all the bits and pieces that they do for just general kind of oral health or whatever they need to do while the person's in that phase.

Fiona Kane: 43:07

But yeah, just understanding that there are phases, and so I think it's letting go of because we have that phase that we're in if we're caring for someone at home and or even if we're staying at their home when they pass. But we're caring for them and you know we have a very set idea about how it should be or all the things we have to do, and suddenly all of the things, like all the appointment times, they don't matter anymore, and all of the diet protocols, they don't matter anymore, and all all the things, and I think it can be you sort of hold on to those things rigidly because that's been trying really hard to help your person and then it's. It can be really challenging. Yeah, just for the character switch to that. Oh okay, no, no, we're in a different, we've moved into a different place.

Linda Campbell: 43:51

That's where somebody who's not the primary care but can step up and give some support to the care. Yes, yeah, maybe help the cater who realize that. Yeah, yeah, that don't need to worry about us, we don't need.

Fiona Kane: 44:04

Yeah, yeah, exactly, because I know that. Even I think my mum was in palliative care, for I think it was like 20, nearly a month, 23, 24, I can't remember what it was and I just, and everything changed quite dramatically. So first she went in and and she because she had probably needed it earlier than what she eventually did go. She got better initially. She felt better because she sort of suddenly had fluids and good medications and things like that. So initially she picked up and she was getting better, and so she had that sort of phase initially, and then then things sort of started to slowly change and then all of a sudden there's sudden shifts, over and over and over again for days and days. There's all these sudden changes, and that's the thing.

Fiona Kane: 44:49

It's kind of just understanding, it's that ability to kind of switch into oh, we're in this phase now. Oh, we're in this phase now. Yeah, and you know, because initially I was going in and my ritual was to go in and I'll make your cup of tea, I'm making a cup of tea, and then, you know, the day came where she didn't want the cup of tea and I was like, oh, okay, this is where we're shifting now, you know, and it is hard, but it's just part of it. It's accepting that that's really natural.

Linda Campbell: 45:15

Yes, and it is hard With my mum. She I went in one day and she was basically unconscious, in a coma and I thought this is it, this is the end. Two days later, she came out of the coma and picked up again yes, it was only for a few days and then she went into a coma again and that was it. But managing your own feelings during that time can be really hard. Yes, because it's you're preparing for this and then something else happens.

Fiona Kane: 45:58

Yeah, yeah, yeah, definitely, and I think that's the thing it's and it's not. It's not getting your hopes up. When that happens as well, it's not unusual for people to have that pick up just before.

Fiona Kane: 46:09

So just managing, managing yourself around that, yep. Look, I am aware that my computer is giving me all sorts of signals about things. I think it's saying that running out of space, is doing something I don't know. So based on that, I think that we should sort of wind up shortly. But just before we do, though, if my computer holds out and if it lets us do that. Just one other thing to mention too, I think, is just maybe it's something else we can talk about another time, but just touching on how different cultures celebrate or how different cultures act around death, approach death, yeah, approach death, yeah, yeah. So any sort of comments on that, because it's going to be quite broad.

Linda Campbell: 46:54

Look, I think I think in our Western culture we've become very detached from death. People used to die at home, whereas now they tend to die in hospital or hospice. People used to have the body laid out at home, all those things, and we've we've lost that. We've lost that connection there, but in other cultures we were talking about this before. What was that? Tribe that in Indonesia?

Linda Campbell: 47:29

Yes, they mummified the dead person and then they buried them, and then they dig them up once a year and dress them in new clothes and I try not to be really judgy, but I really struggle with that. It would be interesting and I don't know that anybody you know there's been any studies. It'd be interesting to look at how those people, when they're dying, how did they feel? Are they more accepting of it because they know that they're going to be mummified and celebrated once a year.

Fiona Kane: 48:07

I don't know the pronunciation, but it's Toraja T-O-R-A-J A Toraja tribe. But yeah, I don't know how would they feel about it. I don't know, maybe they think it's a good thing because they're going to be. You know, I grow up in a culture where you know, not really around death a lot, and so for me it's just it feels a bit horrifying.

Linda Campbell: 48:28

I'm not sure with that tribe either. What are the? Are the Buddhist or Muslim? Yeah, yeah, I don't know some other religion, I have no idea. But yeah, it would be interesting to do, you know, some more research along those.

Fiona Kane: 48:53

Customs. Yeah, I think people's customs around death and dying are interesting and I think that we yeah, we're very kind of closed and very unable to deal with it in the Western world and I think that we need to learn how to have conversations and open up to it Whether or not we need to be digging up our relatives every year.

Fiona Kane: 49:13

Not for me, but fair enough if that works for that culture. But yeah, certainly celebrating people's life, but celebrating them while they're still alive and treating people like you know we, like you said, we're alive until we're not.

Linda Campbell: 49:26

We have moved again with language. Often now, people don't have a funeral, they have a celebration of life. Yes, so we've moved, you know we're moving, I think into that and there's a movement where there's death cafes where people can go along and discuss death and dying. So I think there is a change happening. Yes, another custom just off the top of my head is Tibetan Buddhism. They would just leave the body out for the vultures to the sky funeral, yes, and then they would gather the bones after the vultures have finished.

Fiona Kane: 50:19

Yes, Not for my Australian sensibilities, I just can't deal with that. But yeah, I think it's probably like even the sort of the viking ones I've seen on television. At least they burn the bodies.

Linda Campbell: 50:34

I think, I think well with that one in Tibet. It's because there's not much else you can really do with the body there.

Fiona Kane: 50:44

Yes, yeah, like I understand the burning, those burning rituals and things, and they do the same thing in India, I believe as well. I've seen that. But yeah, it's just. Yeah, anyway, that's all a bit much for me, that's tough, but yeah, it shows you though, it's the beliefs we have around. These things are very much about the culture that we've grown up in and what we're used to. That's right. And I think you know if I could sort of summarize sort of today, the most important points for today, I think they really are to being respectful of a person who, in their process, whatever their process, is being respectful of where they're at and just supporting them where they're at.

Linda Campbell: 51:23

Yes, yeah, that's, and allowing them to dictate conversations or those kinds of things, and including them as much as you can.

Fiona Kane: 51:40

Yeah.

Linda Campbell: 51:41

Yeah.

Fiona Kane: 51:42

So treating them like they're still here, because they are yeah. And giving them a lot of space Giving them choice, giving them agency and just allowing them to, in their own process, to be where they need to be, and not trying to dictate how it should be or getting them to look after you and put a happy face on, just so that you can feel comfortable.

Linda Campbell: 52:03

Yeah, yeah.

Fiona Kane: 52:05

Well, thank you so much for that, Linda. I really appreciate it.

Linda Campbell: 52:07

Thank you for having me.

Fiona Kane: 52:09

And if people want to get in contact with you, I will put your details in the show notes. But is there a website or something that you want to draw people's attention to For the end of life doula?

Linda Campbell: 52:18

it's walkingwithyou dot com dot au.

Fiona Kane: 52:23

Okay, walkingwithyou dot com dot au.

Linda Campbell: 52:26

That's correct.

Fiona Kane: 52:27

Yes, okay, thanks for that, Linda. I really appreciate it. Well, thank you for having me, thanks, Fiona, and thank you for everyone at home listening. Whether or not you're listening or watching, I appreciate you, and can you please like, subscribe and share. And don't forget that there's episode 30, where I spoke to Linda as well in regards to grief for the person grieving as opposed to the person who's passing away. So please check out that episode as well, and I'll see you all next time. Thank you, bye.