Planning for Death in Aged Care - Navigating Aged Care Podcast Ep.5
Posted 31st May 2024
Written by Jesse Gramenz 
Family member Brian (left) and Clinial Psychologist Zoe Falster (right) on the Navigating Aged Care Podcast set
In this episode of St. Vincent's Care's Navigating Aged Care series, the hosts discuss the emotional challenges of transitioning a loved one into aged care.
They are joined by residents and their families, as well as aged care staff, a geriatrician, and a psychologist.
"It often can't be done with a single interaction. Sometimes as you said before, we're working through this professionally. We've got a certain outcome in mind, but we need to be prepared to give families and my patients people time to work through these really complex decisions."
Dr. Richard on families processing a potential move to aged care
The guests share their personal experiences and offer advice on coping with the emotional journey of moving a loved one into aged care. They discuss the importance of support networks, therapy, and maintaining healthy relationships during the transition. The experts also provide tips on navigating family dynamics, maintaining boundaries, and creating a comfortable and personalized environment in the aged care facility. Overall, the episode emphasizes the need for empathy, understanding, and self-care during this challenging time.
Hosted by: Nicole Lessio
Produced by: MSQUARE Productions
Episode 5 Transcript
Nicole:
Welcome to episode five of St. Vincent's Care's five-part navigating Aged Care series. I'm your host, Nicole Lessio, and in this our final episode, we're tackling the tough topic of death and how preparing and supporting our loved ones and ourselves through their end of life care with compassion and dignity is crucial. We'll be joined by true experts in the field, the residents, their families, as well as aged care staff, geriatrician and a psychologist joining us first up as Sheridan and Brian, welcome to you both. Thank you, Brian. This is a tough one, isn't it? We're talking about something that all of us try to avoid talking about, but it's inevitable, isn't it? We're all going to die. How do you navigate that kind of conversation with your mum who's in aged care talking about the kind of death that she wants to have?
Brian:
I do agree with you. It's tough, but it is a conversation that I would recommend people have. And again, fortunate enough that mom is quite open to talking about what she would like, and then we seized on that opportunity to really talk it through from the idea of no resuscitation, which she was a part of that conversation through to a funeral burial, what sort of funeral you would like, are there certain prayers or whatever that you would like? And that was a good positive conversation and one that mom was pleased to have, I think, such that we could document it. And it also means that when the time comes, which it will, because mom's nearly 103 and she's in that phase, although her health is good at the moment, but it's obvious it's going to happen, that we continue on as normal, but we know very much how it will happen. And that is a bit of a relief for the family in that it doesn't lead to a bit of internal disagreement among siblings, for instance, that it's all documented. It's quite clear it was mom's wishes. And that is important I think, as us as children of that to go, yes, well, in your final stage, we are doing what you wanted.
Nicole:
Yeah, that's a really important thing to feel when you've done as much as you can and you've done exactly what someone wanted, but the conversation itself, Brian, how hard is it?
Brian:
It is hard. You think about your own mortality and you think about your mom's last parent alive. So that changes things. For me. It's about I'll miss, there's a gap because it's somebody that I have talked to and they've been my counselor and I've been their coach and that. So it will leave a gap. But I suppose I've had to be pragmatic and try and hold back on those emotions and focus on, well, let's be prepared for it.
Nicole:
Yeah. What about you, Sheridan? Have you had those kinds of conversations with your mum?
Sheridan:
Yeah, I have. And that's really well said too, by the way. I really work. Thank you. It's really good. Yeah, we have, because we had trial by fire with dad, we didn't know so much stuff. And you dunno if you're making right decisions, wrong decisions, you have no idea, especially when you're talking end of life decisions. You were talking about resuscitation and stuff, didn't know his wishes. So you make a decision and you have to live with the guilt, the consequences of not knowing. So yes, since then, yes, those conversations have been had. They weren't probably particularly difficult for us because of the circumstances that led to having the conversation. You now realize the necessity for having this conversation. For me, discussing mortality, my own whatever isn't particularly difficult. It's not something I'm fearful of, but I am aware that it is a difficult conversation for a lot of people. But yeah, we had the same, very similar to what you said, ours was very, very similar. Discussing what mom's wishes were, not even just after her death, even in the lead up too about end of life and yes, having them document massively important documentation for sure. Yeah. So we we've had them and yeah, it is emotional. Yeah, you're facing your own mortality as well. Yeah. I don't think I could really say anything better than what you did. It was really very well done.
Nicole:
Well, that's the thing. It feels like you're the next in line then, doesn't it, Brian? Yeah. When you're having those conversations, doesn't it? Yeah.
Brian:
Well, yes, and there's an emotional side to it, but there's also all that practicality of things like is the will in place? Is it current? Who's going to be the executor? You do approach those, maybe not all in the one conversation, but over time, and I think we go back to something that I know we will talk about is you can broach it by the fact of, have we thought about, have you thought about what you'd like mum? And then that might lead into a conversation
Nicole:
And had your mom thought about it.
Brian:
Yes, she had. She's amazed me and again, about sort of how the relationships evolved. She amazed me that I never thought she was a deep thinker, but she is. And I've now beginning, I've learned that and I'm pleased. I've learned that. So we can talk about things now, which are perhaps a little bit more involved, not just about death, sorry, of course, absolutely. Current affairs or opinions or things like that.
Nicole:
But it then does, I think, deepen a relationship that you can then have amazing conversations about. Other things had the biggest one I think you can have, but it's not just about someone's funeral and death itself. It's about their end of life care, isn't it, Sheridan. So those conversations with your mom really challenging to have or you've
Sheridan:
I think for us, probably not. No. I think had we not had the experience we had with dad, yes, it would've been very challenging. But coming off the back of that, we all learn so much from if it's possible to take something good out of something bad, we did and we were like, okay, we don't want to feel this way again. We don't want to be in this position again. The only way to avoid that, to mitigate this entire problem is to just go, okay, well, let's just be really frank about it. We kind of almost said it quite jokingly, really. It was almost a very lighthearted for us. But that's probably more in keeping with my personality that I often joke about things when I'm uncomfortable. You may have noticed that today that yeah, we had this lighthearted kind of conversation. You made a bit of jest about some of it because you did rightly say it's inevitable. So there's no point really overthinking or stressing about it. That's from us. That may not work for everybody different, but that did work for us.
Nicole:
But your mom, I imagine, is someone who's experienced a lot of grief and loss in her life, Brian, so it's hardly a surprise to her. Is it that she will inevitably die?
Brian:
No. And I'm sure, as you've just said, she's seen it happen sometimes in unexpected ways, and you learn from that about what you would like and how you would, so maybe she was hoping that we would ask.
Nicole:
She might've been waiting for it. Yes,
Brian:
Waiting for it. But you've mentioned something just in that conversation about we know that that's sorted. But the actual end of life experience, I feel very comfortable, as do my siblings, that where mom is residing at the moment, that they have spoken about care through the entire cycle, and we feel quite confident that the last part of her journey, she will be wrapped around with care and it will be hopefully very peaceful. And that in itself is nice for us to understand. Yeah,
Sheridan:
Yeah. I understand that. It's really
Nicole:
Comforting. It is comforting
Sheridan:
With the word I was looking for. Yeah,
Nicole:
Because we have our own fears about death. It's really hard to then not put those fears onto our parents, isn't it Sheridan? Yeah. Did you find that with your mom, that you were putting a little bit of what you expected at the end of your life on the conversations you were having?
Sheridan:
Yeah, a little, but I think I was putting probably more my expectations of what I think she should have, because our viewpoints are different, and I had to sort of sit back and think, well, okay, that's not what I want, but that's what she wants and that's okay. I shouldn't be imposing my viewpoints or my feelings onto her. And that was, I think the most important thing is realizing that it's not actually, this conversation is not actually about me in that vein because it is very hard not to put your her 2 cents worth, especially when you're as opinionated as me.
Nicole:
Well, and you've got your own ideas, so you want to
Sheridan:
Share those as well. Of course.
Nicole:
Brian, you mentioned before about the family all having the conversation together. How important has that been for you as a family to be able to have those together?
Brian:
Found it necessary, and it's part of that engagement of everybody being on the same page, I believe is very important because when you are faced with the actual passing, there's so much that's going through your mind with grief and the practicalities associated with it, of clearing the room, preparing the funeral, that to have a bit of a roadmap and have the family working towards that in amongst their grief. I think it again, brings comfort that you are, again, coming back to you are doing what's all been agreed, so let's just move with it, do the next right thing, and we all get through it together, but we'll get through it in a way that we know it's the right legacy.
Sheridan:
Yeah.
Nicole:
Did you have difficulty though, with any conflicts between your siblings, or was it all predicated on what mum wanted?
Brian:
You have to come back to that, but yes, individuals all have different opinions, but we just had to keep coming back to, well, this is what mum wants.
Sheridan:
Yes, agreed.
Brian:
So we're not putting any filters on it. This is how she would like it, but I sort of expressed, well, what about this and what about this? No, I want this and I want that. So again, you can't help bringing your own preconceptions to it and what you might want, but again, you talk it through and you listen. Yeah,
Sheridan:
Agreed. Yeah.
Nicole:
That's a big key,
Sheridan:
Isn't it? Yeah, massively. Yeah.
Nicole:
Yeah. That listening piece,
Sheridan:
Yeah, of course it is. And it's like I said before, it's about remembering it's not actually about you. It is, of course, but it's really not. You have to be mindful that this is the person's wishes, their wishes not yours, and it may not align with your chosen faith or your thoughts or your feelings or whatever, but if you actually have any respect for that person, then you'll follow what they have requested. It's a final act of love. So yeah,
Brian:
Good
Nicole:
Point. That's a really good way of expressing it, is that it is that final act of love that you can show to the person that you love, that I will respect your wishes and do as you've asked us to do. Yeah. It doesn't make it easy though, does it? No,
Sheridan:
No,
Nicole:
No.
Sheridan:
But I think it's easier to have it, have the conversation while the person is Well then wait until they're literally on their deathbed and you're actually, they might be just cognizant enough that you can have a conversation and say, oh, okay, so while you're on life support, what sort of end of life things are you like? No, that's not the right time to have that conversation ever. No. You're better off having the conversation in a non-stressful situation. If you wait until there's something, a stressful moment, then you're not going to make clear decisions.
Nicole:
Yeah. You're adding the stress to the emotional weight that you're already carrying. Yeah.
Sheridan:
Yeah.
Nicole:
I've always thought that funerals and the busy work of what happens after someone dies is actually part of us keeping busy while we're trying to process our own grief. But I think that if we do it in a way that is respecting that person's wishes, then we can do that in a loving expression, just as you said. Yeah. I really like that Sheridan. That makes a lot of sense to me. I'm taking notes in my head of all the things that I need to,
Sheridan:
If you forget, call me. Yeah,
Nicole:
Thank you. Everyone's going to call you now, Sheridan. We're going to listen to you and find out all the things we need to do. Is there anything that you haven't asked mom at end of lifetime, Brian, that you are thinking, I'm running out of time. I need to get this done?
Brian:
That's a good question.
Sheridan:
I That's
Brian:
A good question. And I had thought prior to you asking that, that you have probably covered everything off, but you've got me thinking now, are there? I don't think there is, but I do think that we will revisit it, not to change it, but maybe just at a point to reconfirm that this is still what mom is thinking.
Nicole:
Yeah, because your mom moved into aged care a decade ago, didn't she? Yes, she did. So things can change in that time too. Well,
Brian:
They can about how she's thinking and how she's feeling. Yes, that's right. So I think that's probably a good thing to do. The other reason I think it's important to have that conversation is we do have our own lives, and I want to feel that if I am away, should mum pass away and I'm overseas or something, that at least that things can be progressed that I am aware of, I'm happy with, and that is another level of comfort and that could happen.
Sheridan:
That's actually a good point. I never thought of that, so thank you for that thought. I have to go in. That's never occurred to me. That's actually a really good point. Yeah.
Nicole:
Because it doesn't always happen on the timeline that we expect it to.
Sheridan:
Very true.
Nicole:
Very rarely, in fact.
Sheridan:
Yes, exactly.
Nicole:
Well, I think having the conversation is the biggest takeaway from
Sheridan:
This, of course,
Nicole:
Chat that we've had today. Your advice for anyone who's in that position, Sheridan, what would you tell
Sheridan:
Them about having the discussion? I think as we've touched on already throughout most of our chats, is the need for absolute honesty and no judgment. So you have to approach everything with empathy and kindness and just listen essentially. Because again, like you're saying, it's not about what you want, it's about having a collective idea so that everybody in this what is a very challenging and difficult situation, you can mitigate as much pain as possible. And that comes down to planning wills, making sure everything's all crossed the line, even about knowing where your bank accounts, where's money, where's this, where's knowing these things really, really important. So yeah, it's just about being really open and honest and trusting your family and the people around you to have this conversation with
Nicole:
Your advice. Brian,
Brian:
I couldn't have said anything. I agree. Have the conversation, however you want to approach it and you feel comfortable, but it brings peace of mind to both parties, and I agree with everything you said. I think that sums it up
Sheridan:
Beautifully, and I don't think you necessarily need to wait till you get to a certain age. My takeaway from it was that I went, well, I need to have this conversation with my kids now. Yes, I need to actually do this now. I don't want to wait until I'm 70 or because I don't actually know what my life has in store. No,
Brian:
You don't.
Sheridan:
So yeah, I've actually learned from my experience and gone, well, I'm going to again, mitigate as much pain as I possibly can on my children, and the only way to do that is to do this, and I've had it with my children. That's
Nicole:
Incredible.
Sheridan:
So I've normalized it for them now as well moving forward. Hopefully they can then have this conversation with their partners or their whatever going going forward.
Nicole:
You're modeling the behavior you want to see. I love that. Yeah,
Sheridan:
Pretty much.
Nicole:
I think we all need to learn that lesson. So I really appreciate Brian and you sharing those lessons with us because I think the more that we can have those conversations, the better off we're all going to be. Thank you so much, Sheridan. Thank you so much, Brian. We're going to bring on our experts next to talk about this really sensitive topic. Welcome again to Mark and Zoe and Richard, thank you so much for joining us for this ridiculously important conversation starter that we need to have, that we're all afraid to have. We're not getting any younger, are we? Mark? We're all getting older.
Mark:
You're looking at me,
Nicole:
But we not, we're not going to get any younger, whether we're in aged care or whether we're not in aged care. We're not aging because we're in aged care. We're just aging. Right? Correct. So we all need to have these conversations. We,
Mark:
I totally agree with you. They're completely necessary because we all, no one can avoid it getting older and eventually we are going to die. It's part of the living process.
Nicole:
How do families balance their desire to do as much and get as much life out of their loved one as they possibly can with the idea that actually we're getting to that point now that they are going to die and we need to have these conversations about what it means. How do they balance that, do you think?
Mark:
That's a tough one, but I truly believe the conversation has to center about the person's quality of life and having conversations early. I think Richard alluded to that earlier, that do you have a good death? I think you have to plan those things as well and have these conversations and when we know what the person wants, that will be the compass for every decision that's made that will respect the person's wishes at the end of their life.
Nicole:
Zoe, why are we so afraid to have these conversations about death?
Zoe:
Well, death is so final. I think for a lot of people, it is kind of the ultimate end to this life that we have on earth. And I guess one of the things too acknowledge about death is that there are a multitude of different, I guess beliefs and value systems and cultural kind of practices around death, and that different cultures will perceive it and respond to it and approach it in different ways. But I think in general, it is a big scary topic to talk about. It's somewhat uncomfortable.
Nicole:
How do we make it easier?
Zoe:
So I think acknowledging it early can be helpful if that is part of your culture and that's part of your approach to things. I think that starting a conversation in maybe a bit more of a lighthearted way might be more approachable rather than putting this big heavy thing on the table and really just checking in with the person about, Hey, look, what do you want to talk about here? What would you like to happen?
Nicole:
Yeah. Just starting those little bits of conversation to try and bring it into our every day, isn't it?
Zoe:
And often my observation has been is that we are far more scared about talking about it than the person we're talking to. And in a lot of cases, they talking to a parent or a grandparent about it, they're much more accustomed to it already. They've experienced bereavement, they've experienced loss of friends, they've experienced loss of their own parents. They know a lot more about it than we do. So in actual fact, we can look to them for guidance a bit.
Nicole:
Yeah. Richard, it's not a surprise, is it? That we die?
Richard:
No, no. Well, sometimes it can be. So sometimes there can be sudden death that occurs when it's not at all expected, and that always comes as a big shock. But more often in older people who have started to accumulate illnesses over a period of time, there is a degree of predictability about things, and it allows that time for people to be able to express the view to the extent that they're comfortable about what their preferences might be. I always think there's sort of two parts to it. One is ensuring you've got the formal parts, so the decision makers that you might need if you are no longer able to express your own preferences in place. And then there's all this informal stuff we're talking about too, where over a coffee or over whatever it might be at the footy watching a movie, you're having that discussion about the things that are important to you when that time comes. I think you're absolutely right, Zoe. Often the older person themselves has juggled this concept of mortality much more than perhaps we have done as their children. As you said, they've had relatives, friends, others get towards the end of their life and pass away. So they're much more open, often to discussing things than you might imagine, and actually have a really well-formed view that if you invite, you'll get.
Nicole:
Is that your experience Mark running an aged care facility? Lots of people would be experiencing death in that facility. Is that your experience? That they're very okay with
Mark:
It, but what Zoe is it really resonated. I think that she's spot on about the older person being more comfortable with deaf, and sometimes maybe they are trying to protect their families by not encouraging these conversations. But I think this is where families have a duty to bring these subjects up and they'll probably discover, as Zoe said, that they feel quite comfortable and at peace with the journey.
Nicole:
Yeah. The process itself though, when people are palliating, you've got experience with that, you've got experience with that, Zoe, you've got experience with that Richard, but the person is only doing it for the first time. They might be really scared about what death means and what it looks like. How do you as the aged care facility help make sure that they have a better experience with their loved one?
Mark:
I truly believe it's about planning. Even in death. I think you need to plan. So if you want to have a good death, you have to have plans in place which articulate about what you want at the end stage of your life, and that will relate to how much pain management you want, who you want around you, who we notify and bring in. And I think it's critical that we get a full picture of other person is wanting at the end of their life.
Nicole:
That's a really critical point, isn't it, Zoe, that we get that full picture?
Zoe:
Absolutely. It really reminds me of one of the sentiments that I've heard coming up again and again in palliative care, which is a good death is the kind of death that a person wanted. It can be so many different things, but as long as it's kind of what the person had wanted, the clinicians, the family, the community around them feel more peaceful with that.
Nicole:
And that's what we're aiming for, isn't it, Richard? We're aiming for that piece. After that person passes away, is there such a thing as a good death?
Richard:
Yeah, no, that's absolutely right. That's the thing that sticks with you. And sometimes I was thinking as you were talking then, as the child of someone who might be approaching death, you have a whole range of different emotions yourself that you might almost push onto them. So you might fear losing them more than they may fear dying themself. And you are also the one, as you said, who will carry the experience of that person's death into the future. So I've seen situations where that's been managed particularly well, and other situations where it's been managed more poorly and the family in that situation can often have lingering with them these feelings that person's needs weren't met in the way that they would've liked. And that can really cut quite deeply
Nicole:
That emotional weight is a huge one, isn't it?
Mark:
Again? Can I just add to that? I think you asked, is there a good death? I do believe there is a good death, and in my experience when there has been a good death, it's typically because there is conflict and people not all on the same page. So they have three or four children, they haven't talked and they all haven't been involved. And that's where it's critical. Again, going back planning and evolving people so everyone's on the same page and also singing from the same song sheet, I suppose.
Nicole:
How do we plan that Zoe with our families? How do we have that conversation?
Zoe:
Well, yes, you do have to have a conversation. You can't avoid that part of it. And I think again, it's a kind of approaching it with a sense of curiosity, a sense of openness, a sense of, Hey, look, I think this would be important to talk about. Can you help us understand what you would want?
Nicole:
But we don't know what we're actually getting into. Do we, Richard, what actually happens if I'm in the room with my parent or loved one and they pass away, what am I going to see? What am I going to hear so that it might demystify it? For me,
Richard:
It's such an important question and I often think people are reluctant to ask it, and we as clinicians are often afraid to say, but actually being with someone as they're dying can be really confronting if you don't know what to expect. There are a whole range of different ways that it happens, but it's not always like in the movies where someone just closes their eyes and drifts off to sleep, hopefully, and most of the time it can be done. Someone can die without any distress whatsoever. But often there are changes in the body in the breathing pattern. It can become less frequent, the breathing, it can become more labored. There can be noisy breathing because secretions can sometimes form and not be able to be so easily cleared by the person as they become less conscious. And so all those things are really important and for facility staff to talk with families about, so they know what to expect. There can be really long pauses between breathing too, and that can be really confronting. So the more those conversations sensitively can be had so that people know the extent to which they're comfortable with what might happen, the better, I think. Absolutely.
Nicole:
Yeah. Mark, is that something that you need to be doing with families? Are you doing that as their family member is palliating?
Mark:
Absolutely. And can I just say in most instances, I think Richard's spot on, but in most instances in residential care, it is quite a calm process because it's planned and we have the right support, the right medications. It is, I think it's generally a very peaceful process. Yes, we do have the lead up and sometimes the breathing, but overall in residential care, hospitals may be a little different. We are quite, I suppose, experience in managing this, and people have very peaceful deaths.
Nicole:
It's kind of what we all hope for, isn't it though we, yeah. What about the family in those situations? You are sitting there with your family member, they've died. What happens to our emotions when we're part of that process?
Zoe:
Yeah, obviously it can be very confronting experience to be in the room as a person dies or thereabouts, and so many different kind of responses can follow. One of the things that they say about grief, they used to be this kind of idea that there were these predictable stages that people would move through. And that's largely been disproven by the research, which shows that actually grief is highly, highly variable. And so any number of different reactions might ensue from heart wrenching grief and sorrow to relief and peace, and just a sense of thank goodness they're finally resting. It can be scary, it can be sad. It can invoke anger depending on the circumstances of the death, a whole number of different things.
Nicole:
How do we hold ourselves during that time? What advice can you give us to make that process slightly less challenging?
Zoe:
I think you need to look after yourself and you need to hopefully know yourself well enough to know what you need. So for some people it will be helpful for them to be present, to be there, to be there for the person, and totally immersed in that experience so they don't miss anything. For other people, they may need to step out, and that's okay too. So it's really important that a person is just aware of themselves and what they need to do to take care of themselves
Mark:
And not forgetting that you're never alone. So even if you don't have family, there are staff that will have gone through this process. And really in that residential aged care, we develop deep relationships with people we care for. So the staff that will be there to support not only the resident but their family as well. And we have a whole bunch of team of people that will only be too happy to step in. And so acknowledging that you too can reach out and it's okay. It's okay.
Nicole:
It's a hard thing to acknowledge, isn't it? That we feel like we have to be there or we feel like we have to do a certain thing, that it has to be the right thing.
Mark:
Absolutely. And I think you hit the nail on the head. I would say Anglo culture sometimes can be a little bit stoic about emotions. Just you are human, it's okay to grieve, it's okay to be angry, and it's okay to lean on someone when you need them.
Nicole:
Yeah, all of those emotions are absolutely correct at the time that they're happening, aren't they, Zoe?
Zoe:
Yeah, absolutely. It's so important just to recognize there's no such thing as a false emotion or a bad emotion or a wrong emotion. It's what you feel is what you feel.
Nicole:
What do you get out of your role, Richard, in helping people have those kind of deaths?
Richard:
I think I often say at work in exactly the same way as our role as medical people or as providers of care in health and aged care, is to give people a good life and make their quality of life and sometimes their quantity of life as much as good as it can be. So too, we get enormous satisfaction from being able to support people to have the kind of good death that Mark talked about before, where their needs are met, where they are completely comfortable, where they have the people around them or not around them that they want to have at that particular time. It might be music, it might be a conversation, it might be something that they really want to drink. I had a guy recently who hadn't had a can of Coke for a million years, and all he wanted was a can of in the last few days of his life and his family were able to bring that in for him. So it's often those really little things that if we listen to and attend to, we can help patients and families, residents. In the case of people living residential aged care facilities have access to that allows that to happen, and it gives us enormous satisfaction. Absolutely.
Nicole:
It's quite a privilege, isn't it, mark?
Mark:
Absolutely. It absolutely is a privilege to help people when they pass away and making comfortable and honoring their lives and supporting their families at the end. Yeah,
Nicole:
Because they've had a whole lot of life and death is just another part of that life, isn't it, Zoe?
Zoe:
Yeah, absolutely. And as I said, it means different things to different people. For some people it will be a transition to what comes after. For some people, it will just be at the conclusion of the existence that they know. So it's just really appreciating what it means to them and supporting both the person who is passing away and the people around the person in processing it.
Nicole:
What happens when someone hasn't had the conversation? Mark, how hard is it for the person who is palliating at the end of their life? How hard is it for the families?
Mark:
I believe it's a lot harder because you're not on the same page. It makes it that much more difficult. I think there's an old saying that goes along, failure to planning to fail. I'm not saying it's a fail, but it makes it that much more difficult to get the death that a person deserves. And the process is harder, not only in the person dying, and I truly believe sometimes they may not be unconscious, but they can perceive the anxieties that the families are experiencing. So it's critical that you have these hard conversations earlier on, and you can start the conversations lightly, like Zoe said, but you'd need to have these conversations.
Nicole:
So we need to put in our big person pants and go for it, Zoe.
Zoe:
We do. Yeah, we do. And if I can share a personal story, I had a conversation with this. I had this conversation with my dad before he died some years ago, and he had a fantastic attitude towards it. He could find ways of laughing at anything, and so we had this great conversation and he let me know exactly what he wanted, and that just meant that after he passed away, we could do exactly what he wanted and know exactly that that was what he wanted, and just feels so kind of reassured and endorsed in our approach.
Nicole:
Yeah, it's really comforting, isn't it,
Zoe:
To know It really is. It really is.
Nicole:
Otherwise you're guessing and you go, oh dear, I hope I haven't done the wrong thing. And that can lead to a lot more feelings of guilt and all those things that we were talking about earlier. That relief part that we were talking about before. I wanted to touch on that because sometimes the person that we've loved is a different person that we experienced beforehand. They might have cognitive issues, they might be completely different personality wise because of that. How often does that relief piece come into it, Richard?
Richard:
It can be a really common emotion. I think that particularly if a person has had illnesses that have caused them distress, that sense that they're no longer suffering can be really heightened afterwards. That sense of relief that whether they've been troubled by cognitive impairment that's made them less oriented and less settled within themself, or whether they've had physical pain or breathing difficulties, whatever it might be that was causing them the stress before they died, that sense of relief afterwards that that's no longer a struggle for them, can be really, really significant and a real help, I think, for people to feel that the person is now in a better place, whatever that place is, it's just a place where there's not still that suffering that they may have had. And then even where there hasn't been symptoms of distress leading up to someone's death, if the death has been a good peaceful one where the needs have been met, as we've described that sense, we were able, that sense of satisfaction, I suppose, that the family and the clinicians have been looking after the person have been able to provide that death that allows the people to have those needs met as it can be really relieving and reassuring as well.
Nicole:
But it all starts from a conversation, doesn't it, guys?
Speaker 7:
Totally.
Nicole:
So we need to make that happen priority, I think. I want to thank all three of you for joining us today on this amazing journey that we've had. We've gone through a lot of different things that we're talking about, and I'm really grateful for your honesty and openness, and I know that people listening are going to be going, I really need to have that conversation. That's what the whole point of this is, isn't it? So thank you so much to Dr. Richard, to Zoe, and to Mark. It's a
Speaker 7:
Pleasure. Thank you. Thank you.
Nicole:
We could do a whole series on grief and how we can support ourselves through it, but the biggest takeaway is to be kind to ourselves, be gentle because grief is a beast, but we can make it slightly less beastly by having some of these conversations beforehand. That was the last episode in our Navigating Aged Care series. We hope it's been a source of some valuable insights and support for you. I know I've learned a lot and feel a lot more prepared to have some really honest and open conversations with my own parents. I hope you feel more prepared too. I want to thank Sheridan, grace, Brian, Dr. Richard, mark, and Zoe for joining us for this episode and for the entire series. Thanks also for you for joining in. If you found this episode helpful, be sure to hit the follow button and share it with your friends and family. Don't forget to visit our website, www.sbcs.org au to watch the videos from our latest campaign, which inspired this podcast series. You can also stay connected with us on Facebook, Instagram, or LinkedIn by searching St. Vincent's Care. And if you've enjoyed this podcast, leaving a rating or review would mean the world to us. It really helps other people find the content. We hope this series will serve as a useful guide for you and your family in navigating your loved one's own aged care journey. Take care, and bye for now.
Welcome to episode five of St. Vincent's Care's five-part navigating Aged Care series. I'm your host, Nicole Lessio, and in this our final episode, we're tackling the tough topic of death and how preparing and supporting our loved ones and ourselves through their end of life care with compassion and dignity is crucial. We'll be joined by true experts in the field, the residents, their families, as well as aged care staff, geriatrician and a psychologist joining us first up as Sheridan and Brian, welcome to you both. Thank you, Brian. This is a tough one, isn't it? We're talking about something that all of us try to avoid talking about, but it's inevitable, isn't it? We're all going to die. How do you navigate that kind of conversation with your mum who's in aged care talking about the kind of death that she wants to have?
Brian:
I do agree with you. It's tough, but it is a conversation that I would recommend people have. And again, fortunate enough that mom is quite open to talking about what she would like, and then we seized on that opportunity to really talk it through from the idea of no resuscitation, which she was a part of that conversation through to a funeral burial, what sort of funeral you would like, are there certain prayers or whatever that you would like? And that was a good positive conversation and one that mom was pleased to have, I think, such that we could document it. And it also means that when the time comes, which it will, because mom's nearly 103 and she's in that phase, although her health is good at the moment, but it's obvious it's going to happen, that we continue on as normal, but we know very much how it will happen. And that is a bit of a relief for the family in that it doesn't lead to a bit of internal disagreement among siblings, for instance, that it's all documented. It's quite clear it was mom's wishes. And that is important I think, as us as children of that to go, yes, well, in your final stage, we are doing what you wanted.
Nicole:
Yeah, that's a really important thing to feel when you've done as much as you can and you've done exactly what someone wanted, but the conversation itself, Brian, how hard is it?
Brian:
It is hard. You think about your own mortality and you think about your mom's last parent alive. So that changes things. For me. It's about I'll miss, there's a gap because it's somebody that I have talked to and they've been my counselor and I've been their coach and that. So it will leave a gap. But I suppose I've had to be pragmatic and try and hold back on those emotions and focus on, well, let's be prepared for it.
Nicole:
Yeah. What about you, Sheridan? Have you had those kinds of conversations with your mum?
Sheridan:
Yeah, I have. And that's really well said too, by the way. I really work. Thank you. It's really good. Yeah, we have, because we had trial by fire with dad, we didn't know so much stuff. And you dunno if you're making right decisions, wrong decisions, you have no idea, especially when you're talking end of life decisions. You were talking about resuscitation and stuff, didn't know his wishes. So you make a decision and you have to live with the guilt, the consequences of not knowing. So yes, since then, yes, those conversations have been had. They weren't probably particularly difficult for us because of the circumstances that led to having the conversation. You now realize the necessity for having this conversation. For me, discussing mortality, my own whatever isn't particularly difficult. It's not something I'm fearful of, but I am aware that it is a difficult conversation for a lot of people. But yeah, we had the same, very similar to what you said, ours was very, very similar. Discussing what mom's wishes were, not even just after her death, even in the lead up too about end of life and yes, having them document massively important documentation for sure. Yeah. So we we've had them and yeah, it is emotional. Yeah, you're facing your own mortality as well. Yeah. I don't think I could really say anything better than what you did. It was really very well done.
Nicole:
Well, that's the thing. It feels like you're the next in line then, doesn't it, Brian? Yeah. When you're having those conversations, doesn't it? Yeah.
Brian:
Well, yes, and there's an emotional side to it, but there's also all that practicality of things like is the will in place? Is it current? Who's going to be the executor? You do approach those, maybe not all in the one conversation, but over time, and I think we go back to something that I know we will talk about is you can broach it by the fact of, have we thought about, have you thought about what you'd like mum? And then that might lead into a conversation
Nicole:
And had your mom thought about it.
Brian:
Yes, she had. She's amazed me and again, about sort of how the relationships evolved. She amazed me that I never thought she was a deep thinker, but she is. And I've now beginning, I've learned that and I'm pleased. I've learned that. So we can talk about things now, which are perhaps a little bit more involved, not just about death, sorry, of course, absolutely. Current affairs or opinions or things like that.
Nicole:
But it then does, I think, deepen a relationship that you can then have amazing conversations about. Other things had the biggest one I think you can have, but it's not just about someone's funeral and death itself. It's about their end of life care, isn't it, Sheridan. So those conversations with your mom really challenging to have or you've
Sheridan:
I think for us, probably not. No. I think had we not had the experience we had with dad, yes, it would've been very challenging. But coming off the back of that, we all learn so much from if it's possible to take something good out of something bad, we did and we were like, okay, we don't want to feel this way again. We don't want to be in this position again. The only way to avoid that, to mitigate this entire problem is to just go, okay, well, let's just be really frank about it. We kind of almost said it quite jokingly, really. It was almost a very lighthearted for us. But that's probably more in keeping with my personality that I often joke about things when I'm uncomfortable. You may have noticed that today that yeah, we had this lighthearted kind of conversation. You made a bit of jest about some of it because you did rightly say it's inevitable. So there's no point really overthinking or stressing about it. That's from us. That may not work for everybody different, but that did work for us.
Nicole:
But your mom, I imagine, is someone who's experienced a lot of grief and loss in her life, Brian, so it's hardly a surprise to her. Is it that she will inevitably die?
Brian:
No. And I'm sure, as you've just said, she's seen it happen sometimes in unexpected ways, and you learn from that about what you would like and how you would, so maybe she was hoping that we would ask.
Nicole:
She might've been waiting for it. Yes,
Brian:
Waiting for it. But you've mentioned something just in that conversation about we know that that's sorted. But the actual end of life experience, I feel very comfortable, as do my siblings, that where mom is residing at the moment, that they have spoken about care through the entire cycle, and we feel quite confident that the last part of her journey, she will be wrapped around with care and it will be hopefully very peaceful. And that in itself is nice for us to understand. Yeah,
Sheridan:
Yeah. I understand that. It's really
Nicole:
Comforting. It is comforting
Sheridan:
With the word I was looking for. Yeah,
Nicole:
Because we have our own fears about death. It's really hard to then not put those fears onto our parents, isn't it Sheridan? Yeah. Did you find that with your mom, that you were putting a little bit of what you expected at the end of your life on the conversations you were having?
Sheridan:
Yeah, a little, but I think I was putting probably more my expectations of what I think she should have, because our viewpoints are different, and I had to sort of sit back and think, well, okay, that's not what I want, but that's what she wants and that's okay. I shouldn't be imposing my viewpoints or my feelings onto her. And that was, I think the most important thing is realizing that it's not actually, this conversation is not actually about me in that vein because it is very hard not to put your her 2 cents worth, especially when you're as opinionated as me.
Nicole:
Well, and you've got your own ideas, so you want to
Sheridan:
Share those as well. Of course.
Nicole:
Brian, you mentioned before about the family all having the conversation together. How important has that been for you as a family to be able to have those together?
Brian:
Found it necessary, and it's part of that engagement of everybody being on the same page, I believe is very important because when you are faced with the actual passing, there's so much that's going through your mind with grief and the practicalities associated with it, of clearing the room, preparing the funeral, that to have a bit of a roadmap and have the family working towards that in amongst their grief. I think it again, brings comfort that you are, again, coming back to you are doing what's all been agreed, so let's just move with it, do the next right thing, and we all get through it together, but we'll get through it in a way that we know it's the right legacy.
Sheridan:
Yeah.
Nicole:
Did you have difficulty though, with any conflicts between your siblings, or was it all predicated on what mum wanted?
Brian:
You have to come back to that, but yes, individuals all have different opinions, but we just had to keep coming back to, well, this is what mum wants.
Sheridan:
Yes, agreed.
Brian:
So we're not putting any filters on it. This is how she would like it, but I sort of expressed, well, what about this and what about this? No, I want this and I want that. So again, you can't help bringing your own preconceptions to it and what you might want, but again, you talk it through and you listen. Yeah,
Sheridan:
Agreed. Yeah.
Nicole:
That's a big key,
Sheridan:
Isn't it? Yeah, massively. Yeah.
Nicole:
Yeah. That listening piece,
Sheridan:
Yeah, of course it is. And it's like I said before, it's about remembering it's not actually about you. It is, of course, but it's really not. You have to be mindful that this is the person's wishes, their wishes not yours, and it may not align with your chosen faith or your thoughts or your feelings or whatever, but if you actually have any respect for that person, then you'll follow what they have requested. It's a final act of love. So yeah,
Brian:
Good
Nicole:
Point. That's a really good way of expressing it, is that it is that final act of love that you can show to the person that you love, that I will respect your wishes and do as you've asked us to do. Yeah. It doesn't make it easy though, does it? No,
Sheridan:
No,
Nicole:
No.
Sheridan:
But I think it's easier to have it, have the conversation while the person is Well then wait until they're literally on their deathbed and you're actually, they might be just cognizant enough that you can have a conversation and say, oh, okay, so while you're on life support, what sort of end of life things are you like? No, that's not the right time to have that conversation ever. No. You're better off having the conversation in a non-stressful situation. If you wait until there's something, a stressful moment, then you're not going to make clear decisions.
Nicole:
Yeah. You're adding the stress to the emotional weight that you're already carrying. Yeah.
Sheridan:
Yeah.
Nicole:
I've always thought that funerals and the busy work of what happens after someone dies is actually part of us keeping busy while we're trying to process our own grief. But I think that if we do it in a way that is respecting that person's wishes, then we can do that in a loving expression, just as you said. Yeah. I really like that Sheridan. That makes a lot of sense to me. I'm taking notes in my head of all the things that I need to,
Sheridan:
If you forget, call me. Yeah,
Nicole:
Thank you. Everyone's going to call you now, Sheridan. We're going to listen to you and find out all the things we need to do. Is there anything that you haven't asked mom at end of lifetime, Brian, that you are thinking, I'm running out of time. I need to get this done?
Brian:
That's a good question.
Sheridan:
I That's
Brian:
A good question. And I had thought prior to you asking that, that you have probably covered everything off, but you've got me thinking now, are there? I don't think there is, but I do think that we will revisit it, not to change it, but maybe just at a point to reconfirm that this is still what mom is thinking.
Nicole:
Yeah, because your mom moved into aged care a decade ago, didn't she? Yes, she did. So things can change in that time too. Well,
Brian:
They can about how she's thinking and how she's feeling. Yes, that's right. So I think that's probably a good thing to do. The other reason I think it's important to have that conversation is we do have our own lives, and I want to feel that if I am away, should mum pass away and I'm overseas or something, that at least that things can be progressed that I am aware of, I'm happy with, and that is another level of comfort and that could happen.
Sheridan:
That's actually a good point. I never thought of that, so thank you for that thought. I have to go in. That's never occurred to me. That's actually a really good point. Yeah.
Nicole:
Because it doesn't always happen on the timeline that we expect it to.
Sheridan:
Very true.
Nicole:
Very rarely, in fact.
Sheridan:
Yes, exactly.
Nicole:
Well, I think having the conversation is the biggest takeaway from
Sheridan:
This, of course,
Nicole:
Chat that we've had today. Your advice for anyone who's in that position, Sheridan, what would you tell
Sheridan:
Them about having the discussion? I think as we've touched on already throughout most of our chats, is the need for absolute honesty and no judgment. So you have to approach everything with empathy and kindness and just listen essentially. Because again, like you're saying, it's not about what you want, it's about having a collective idea so that everybody in this what is a very challenging and difficult situation, you can mitigate as much pain as possible. And that comes down to planning wills, making sure everything's all crossed the line, even about knowing where your bank accounts, where's money, where's this, where's knowing these things really, really important. So yeah, it's just about being really open and honest and trusting your family and the people around you to have this conversation with
Nicole:
Your advice. Brian,
Brian:
I couldn't have said anything. I agree. Have the conversation, however you want to approach it and you feel comfortable, but it brings peace of mind to both parties, and I agree with everything you said. I think that sums it up
Sheridan:
Beautifully, and I don't think you necessarily need to wait till you get to a certain age. My takeaway from it was that I went, well, I need to have this conversation with my kids now. Yes, I need to actually do this now. I don't want to wait until I'm 70 or because I don't actually know what my life has in store. No,
Brian:
You don't.
Sheridan:
So yeah, I've actually learned from my experience and gone, well, I'm going to again, mitigate as much pain as I possibly can on my children, and the only way to do that is to do this, and I've had it with my children. That's
Nicole:
Incredible.
Sheridan:
So I've normalized it for them now as well moving forward. Hopefully they can then have this conversation with their partners or their whatever going going forward.
Nicole:
You're modeling the behavior you want to see. I love that. Yeah,
Sheridan:
Pretty much.
Nicole:
I think we all need to learn that lesson. So I really appreciate Brian and you sharing those lessons with us because I think the more that we can have those conversations, the better off we're all going to be. Thank you so much, Sheridan. Thank you so much, Brian. We're going to bring on our experts next to talk about this really sensitive topic. Welcome again to Mark and Zoe and Richard, thank you so much for joining us for this ridiculously important conversation starter that we need to have, that we're all afraid to have. We're not getting any younger, are we? Mark? We're all getting older.
Mark:
You're looking at me,
Nicole:
But we not, we're not going to get any younger, whether we're in aged care or whether we're not in aged care. We're not aging because we're in aged care. We're just aging. Right? Correct. So we all need to have these conversations. We,
Mark:
I totally agree with you. They're completely necessary because we all, no one can avoid it getting older and eventually we are going to die. It's part of the living process.
Nicole:
How do families balance their desire to do as much and get as much life out of their loved one as they possibly can with the idea that actually we're getting to that point now that they are going to die and we need to have these conversations about what it means. How do they balance that, do you think?
Mark:
That's a tough one, but I truly believe the conversation has to center about the person's quality of life and having conversations early. I think Richard alluded to that earlier, that do you have a good death? I think you have to plan those things as well and have these conversations and when we know what the person wants, that will be the compass for every decision that's made that will respect the person's wishes at the end of their life.
Nicole:
Zoe, why are we so afraid to have these conversations about death?
Zoe:
Well, death is so final. I think for a lot of people, it is kind of the ultimate end to this life that we have on earth. And I guess one of the things too acknowledge about death is that there are a multitude of different, I guess beliefs and value systems and cultural kind of practices around death, and that different cultures will perceive it and respond to it and approach it in different ways. But I think in general, it is a big scary topic to talk about. It's somewhat uncomfortable.
Nicole:
How do we make it easier?
Zoe:
So I think acknowledging it early can be helpful if that is part of your culture and that's part of your approach to things. I think that starting a conversation in maybe a bit more of a lighthearted way might be more approachable rather than putting this big heavy thing on the table and really just checking in with the person about, Hey, look, what do you want to talk about here? What would you like to happen?
Nicole:
Yeah. Just starting those little bits of conversation to try and bring it into our every day, isn't it?
Zoe:
And often my observation has been is that we are far more scared about talking about it than the person we're talking to. And in a lot of cases, they talking to a parent or a grandparent about it, they're much more accustomed to it already. They've experienced bereavement, they've experienced loss of friends, they've experienced loss of their own parents. They know a lot more about it than we do. So in actual fact, we can look to them for guidance a bit.
Nicole:
Yeah. Richard, it's not a surprise, is it? That we die?
Richard:
No, no. Well, sometimes it can be. So sometimes there can be sudden death that occurs when it's not at all expected, and that always comes as a big shock. But more often in older people who have started to accumulate illnesses over a period of time, there is a degree of predictability about things, and it allows that time for people to be able to express the view to the extent that they're comfortable about what their preferences might be. I always think there's sort of two parts to it. One is ensuring you've got the formal parts, so the decision makers that you might need if you are no longer able to express your own preferences in place. And then there's all this informal stuff we're talking about too, where over a coffee or over whatever it might be at the footy watching a movie, you're having that discussion about the things that are important to you when that time comes. I think you're absolutely right, Zoe. Often the older person themselves has juggled this concept of mortality much more than perhaps we have done as their children. As you said, they've had relatives, friends, others get towards the end of their life and pass away. So they're much more open, often to discussing things than you might imagine, and actually have a really well-formed view that if you invite, you'll get.
Nicole:
Is that your experience Mark running an aged care facility? Lots of people would be experiencing death in that facility. Is that your experience? That they're very okay with
Mark:
It, but what Zoe is it really resonated. I think that she's spot on about the older person being more comfortable with deaf, and sometimes maybe they are trying to protect their families by not encouraging these conversations. But I think this is where families have a duty to bring these subjects up and they'll probably discover, as Zoe said, that they feel quite comfortable and at peace with the journey.
Nicole:
Yeah. The process itself though, when people are palliating, you've got experience with that, you've got experience with that, Zoe, you've got experience with that Richard, but the person is only doing it for the first time. They might be really scared about what death means and what it looks like. How do you as the aged care facility help make sure that they have a better experience with their loved one?
Mark:
I truly believe it's about planning. Even in death. I think you need to plan. So if you want to have a good death, you have to have plans in place which articulate about what you want at the end stage of your life, and that will relate to how much pain management you want, who you want around you, who we notify and bring in. And I think it's critical that we get a full picture of other person is wanting at the end of their life.
Nicole:
That's a really critical point, isn't it, Zoe, that we get that full picture?
Zoe:
Absolutely. It really reminds me of one of the sentiments that I've heard coming up again and again in palliative care, which is a good death is the kind of death that a person wanted. It can be so many different things, but as long as it's kind of what the person had wanted, the clinicians, the family, the community around them feel more peaceful with that.
Nicole:
And that's what we're aiming for, isn't it, Richard? We're aiming for that piece. After that person passes away, is there such a thing as a good death?
Richard:
Yeah, no, that's absolutely right. That's the thing that sticks with you. And sometimes I was thinking as you were talking then, as the child of someone who might be approaching death, you have a whole range of different emotions yourself that you might almost push onto them. So you might fear losing them more than they may fear dying themself. And you are also the one, as you said, who will carry the experience of that person's death into the future. So I've seen situations where that's been managed particularly well, and other situations where it's been managed more poorly and the family in that situation can often have lingering with them these feelings that person's needs weren't met in the way that they would've liked. And that can really cut quite deeply
Nicole:
That emotional weight is a huge one, isn't it?
Mark:
Again? Can I just add to that? I think you asked, is there a good death? I do believe there is a good death, and in my experience when there has been a good death, it's typically because there is conflict and people not all on the same page. So they have three or four children, they haven't talked and they all haven't been involved. And that's where it's critical. Again, going back planning and evolving people so everyone's on the same page and also singing from the same song sheet, I suppose.
Nicole:
How do we plan that Zoe with our families? How do we have that conversation?
Zoe:
Well, yes, you do have to have a conversation. You can't avoid that part of it. And I think again, it's a kind of approaching it with a sense of curiosity, a sense of openness, a sense of, Hey, look, I think this would be important to talk about. Can you help us understand what you would want?
Nicole:
But we don't know what we're actually getting into. Do we, Richard, what actually happens if I'm in the room with my parent or loved one and they pass away, what am I going to see? What am I going to hear so that it might demystify it? For me,
Richard:
It's such an important question and I often think people are reluctant to ask it, and we as clinicians are often afraid to say, but actually being with someone as they're dying can be really confronting if you don't know what to expect. There are a whole range of different ways that it happens, but it's not always like in the movies where someone just closes their eyes and drifts off to sleep, hopefully, and most of the time it can be done. Someone can die without any distress whatsoever. But often there are changes in the body in the breathing pattern. It can become less frequent, the breathing, it can become more labored. There can be noisy breathing because secretions can sometimes form and not be able to be so easily cleared by the person as they become less conscious. And so all those things are really important and for facility staff to talk with families about, so they know what to expect. There can be really long pauses between breathing too, and that can be really confronting. So the more those conversations sensitively can be had so that people know the extent to which they're comfortable with what might happen, the better, I think. Absolutely.
Nicole:
Yeah. Mark, is that something that you need to be doing with families? Are you doing that as their family member is palliating?
Mark:
Absolutely. And can I just say in most instances, I think Richard's spot on, but in most instances in residential care, it is quite a calm process because it's planned and we have the right support, the right medications. It is, I think it's generally a very peaceful process. Yes, we do have the lead up and sometimes the breathing, but overall in residential care, hospitals may be a little different. We are quite, I suppose, experience in managing this, and people have very peaceful deaths.
Nicole:
It's kind of what we all hope for, isn't it though we, yeah. What about the family in those situations? You are sitting there with your family member, they've died. What happens to our emotions when we're part of that process?
Zoe:
Yeah, obviously it can be very confronting experience to be in the room as a person dies or thereabouts, and so many different kind of responses can follow. One of the things that they say about grief, they used to be this kind of idea that there were these predictable stages that people would move through. And that's largely been disproven by the research, which shows that actually grief is highly, highly variable. And so any number of different reactions might ensue from heart wrenching grief and sorrow to relief and peace, and just a sense of thank goodness they're finally resting. It can be scary, it can be sad. It can invoke anger depending on the circumstances of the death, a whole number of different things.
Nicole:
How do we hold ourselves during that time? What advice can you give us to make that process slightly less challenging?
Zoe:
I think you need to look after yourself and you need to hopefully know yourself well enough to know what you need. So for some people it will be helpful for them to be present, to be there, to be there for the person, and totally immersed in that experience so they don't miss anything. For other people, they may need to step out, and that's okay too. So it's really important that a person is just aware of themselves and what they need to do to take care of themselves
Mark:
And not forgetting that you're never alone. So even if you don't have family, there are staff that will have gone through this process. And really in that residential aged care, we develop deep relationships with people we care for. So the staff that will be there to support not only the resident but their family as well. And we have a whole bunch of team of people that will only be too happy to step in. And so acknowledging that you too can reach out and it's okay. It's okay.
Nicole:
It's a hard thing to acknowledge, isn't it? That we feel like we have to be there or we feel like we have to do a certain thing, that it has to be the right thing.
Mark:
Absolutely. And I think you hit the nail on the head. I would say Anglo culture sometimes can be a little bit stoic about emotions. Just you are human, it's okay to grieve, it's okay to be angry, and it's okay to lean on someone when you need them.
Nicole:
Yeah, all of those emotions are absolutely correct at the time that they're happening, aren't they, Zoe?
Zoe:
Yeah, absolutely. It's so important just to recognize there's no such thing as a false emotion or a bad emotion or a wrong emotion. It's what you feel is what you feel.
Nicole:
What do you get out of your role, Richard, in helping people have those kind of deaths?
Richard:
I think I often say at work in exactly the same way as our role as medical people or as providers of care in health and aged care, is to give people a good life and make their quality of life and sometimes their quantity of life as much as good as it can be. So too, we get enormous satisfaction from being able to support people to have the kind of good death that Mark talked about before, where their needs are met, where they are completely comfortable, where they have the people around them or not around them that they want to have at that particular time. It might be music, it might be a conversation, it might be something that they really want to drink. I had a guy recently who hadn't had a can of Coke for a million years, and all he wanted was a can of in the last few days of his life and his family were able to bring that in for him. So it's often those really little things that if we listen to and attend to, we can help patients and families, residents. In the case of people living residential aged care facilities have access to that allows that to happen, and it gives us enormous satisfaction. Absolutely.
Nicole:
It's quite a privilege, isn't it, mark?
Mark:
Absolutely. It absolutely is a privilege to help people when they pass away and making comfortable and honoring their lives and supporting their families at the end. Yeah,
Nicole:
Because they've had a whole lot of life and death is just another part of that life, isn't it, Zoe?
Zoe:
Yeah, absolutely. And as I said, it means different things to different people. For some people it will be a transition to what comes after. For some people, it will just be at the conclusion of the existence that they know. So it's just really appreciating what it means to them and supporting both the person who is passing away and the people around the person in processing it.
Nicole:
What happens when someone hasn't had the conversation? Mark, how hard is it for the person who is palliating at the end of their life? How hard is it for the families?
Mark:
I believe it's a lot harder because you're not on the same page. It makes it that much more difficult. I think there's an old saying that goes along, failure to planning to fail. I'm not saying it's a fail, but it makes it that much more difficult to get the death that a person deserves. And the process is harder, not only in the person dying, and I truly believe sometimes they may not be unconscious, but they can perceive the anxieties that the families are experiencing. So it's critical that you have these hard conversations earlier on, and you can start the conversations lightly, like Zoe said, but you'd need to have these conversations.
Nicole:
So we need to put in our big person pants and go for it, Zoe.
Zoe:
We do. Yeah, we do. And if I can share a personal story, I had a conversation with this. I had this conversation with my dad before he died some years ago, and he had a fantastic attitude towards it. He could find ways of laughing at anything, and so we had this great conversation and he let me know exactly what he wanted, and that just meant that after he passed away, we could do exactly what he wanted and know exactly that that was what he wanted, and just feels so kind of reassured and endorsed in our approach.
Nicole:
Yeah, it's really comforting, isn't it,
Zoe:
To know It really is. It really is.
Nicole:
Otherwise you're guessing and you go, oh dear, I hope I haven't done the wrong thing. And that can lead to a lot more feelings of guilt and all those things that we were talking about earlier. That relief part that we were talking about before. I wanted to touch on that because sometimes the person that we've loved is a different person that we experienced beforehand. They might have cognitive issues, they might be completely different personality wise because of that. How often does that relief piece come into it, Richard?
Richard:
It can be a really common emotion. I think that particularly if a person has had illnesses that have caused them distress, that sense that they're no longer suffering can be really heightened afterwards. That sense of relief that whether they've been troubled by cognitive impairment that's made them less oriented and less settled within themself, or whether they've had physical pain or breathing difficulties, whatever it might be that was causing them the stress before they died, that sense of relief afterwards that that's no longer a struggle for them, can be really, really significant and a real help, I think, for people to feel that the person is now in a better place, whatever that place is, it's just a place where there's not still that suffering that they may have had. And then even where there hasn't been symptoms of distress leading up to someone's death, if the death has been a good peaceful one where the needs have been met, as we've described that sense, we were able, that sense of satisfaction, I suppose, that the family and the clinicians have been looking after the person have been able to provide that death that allows the people to have those needs met as it can be really relieving and reassuring as well.
Nicole:
But it all starts from a conversation, doesn't it, guys?
Speaker 7:
Totally.
Nicole:
So we need to make that happen priority, I think. I want to thank all three of you for joining us today on this amazing journey that we've had. We've gone through a lot of different things that we're talking about, and I'm really grateful for your honesty and openness, and I know that people listening are going to be going, I really need to have that conversation. That's what the whole point of this is, isn't it? So thank you so much to Dr. Richard, to Zoe, and to Mark. It's a
Speaker 7:
Pleasure. Thank you. Thank you.
Nicole:
We could do a whole series on grief and how we can support ourselves through it, but the biggest takeaway is to be kind to ourselves, be gentle because grief is a beast, but we can make it slightly less beastly by having some of these conversations beforehand. That was the last episode in our Navigating Aged Care series. We hope it's been a source of some valuable insights and support for you. I know I've learned a lot and feel a lot more prepared to have some really honest and open conversations with my own parents. I hope you feel more prepared too. I want to thank Sheridan, grace, Brian, Dr. Richard, mark, and Zoe for joining us for this episode and for the entire series. Thanks also for you for joining in. If you found this episode helpful, be sure to hit the follow button and share it with your friends and family. Don't forget to visit our website, www.sbcs.org au to watch the videos from our latest campaign, which inspired this podcast series. You can also stay connected with us on Facebook, Instagram, or LinkedIn by searching St. Vincent's Care. And if you've enjoyed this podcast, leaving a rating or review would mean the world to us. It really helps other people find the content. We hope this series will serve as a useful guide for you and your family in navigating your loved one's own aged care journey. Take care, and bye for now.
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