Do You Really Want to Be a Carer? The Question Nobody Asks

Imagine caring for someone for over 20 years without anyone ever asking if you want to be their carer. It sounds unthinkable, right? In this episode, we delve into this powerful, often unasked question and explore what it truly means to support someone at the end of their life, without sacrificing your own.

Join me as I chat with Inge McGinn, a Senior Counsellor and Caseworker from Peninsula Home Hospice, who has over 25 years of experience working in palliative care. Inge’s unique journey to this field started with deeply personal experiences that taught her the importance of discussing death openly.

She’s passionate about helping people talk about what’s often left unspoken: death, dying, and the role of carers. In our conversation, we explore how she supports carers in navigating the intense emotional journey that comes with caring for someone at the end of life. Inge’s approach brings compassion to an often-overlooked aspect of palliative care, recognising carers' needs and creating space for their struggles and strengths.

In this episode, Inge and I also tackle the importance of asking carers, “Do you actually want this role?” It’s a powerful moment when carers realise they can have a say in their role. We unpack how understanding their own limits, boundaries, and desires can help carers fulfil their responsibilities with respect for both themselves and those they care for.

Whether you're a carer, know someone who is, or are interested in palliative care, Inge's wisdom and experiences offer a touching perspective on what it means to live—and die—with dignity and support.

Key Takeaways:

• The Question No One Asks Carers: How "Do you want to be a carer?" can transform lives.
• Caring Beyond Assumptions: Recognising the unique challenges and choices every carer faces.
• Self-Care for Carers: Inge’s insights on setting boundaries and maintaining your identity.
• Community and Compassion: How a strong support network can uplift both carers and the dying.


Remember: You may not be ready to die, but at least you can be prepared.

Take care,
Catherine

Chapters:
00:01 - Introduction to palliative care journey and experiences in family therapy
02:28 - Inga's inspiration to work in palliative care and early professional experiences
03:17 - Challenges faced in juvenile j

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Music composer: Ania Reynolds - https://www.aniareynolds.com/

Transcript

highlight & episode: 0:01

It was only fairly recently I was speaking to someone who had popped in and I asked them, do you want to be the carer? And they said, no one has ever asked me. And they had been caring for over 20 years. And I said, well, let's look at that. Let's unpack that over the next couple of sessions and recognising and breaking down what she can do, what she felt competent doing, where she felt she was struggling, where she could ask for support in those areas, but unpacking all of that so that she could be the person that she wanted and needed to be for her partner during this time.

intro: 0:43

Welcome to Don't Be Caught Dead, a podcast encouraging open conversations about dying and the death of a loved one. I'm your host, Catherine Ashton, founder of critical info and i'm helping to bring your stories of death back to life because while you may not be ready to die at least you can be prepared, Don't Be Caught Dead acknowledges the lands of the Kulin Nations and recognises their connection to land, sea and community. We pay our respects to their Elders, past, present and emerging and extend that respect to all Aboriginal and Torres Strait Islander and First Nation peoples around the globe.

highlight & episode: 1:24

So today I have with me Inga McGinn. She is a Senior Counsellor Caseworker from Peninsula Home Hospice and she works alongside specialist palliative care nursing, palliative care physicians and trained volunteers in community palliative care. Inga has worked in palliative care for over 25 years. She's worked with children, teenagers, young adults and older people. Her roles have included clinical supervisor, manager, clinical family therapist and bereavement counsellor. Inga is very passionate about supporting her clients and palliative care and I had the privilege of being a panellist with Inga at a recent Dying to Know Day event down here on the Mornington Peninsula and I look forward to sharing more of her passion and learning how she started when we chat to her now. Welcome to the show, Inga. Thanks, Catherine. Now tell me, what led you to actually pursue a career in palliative care? Really good question. I know we had a conversation over lunch when we were chatting with other people from the field. And I think you made that statement about, oh, well, you know, I've had this experience in terms of dying. I don't think I've ever met anyone who hasn't had some sort of experience that has led them to palliative care when they take on palliative care as a vocation rather than just a job. And I think I'm no different either. I don't think I was led and it was definitely not on my horizon when I was working and making choices. There was probably two things that stood out and made me think, ah, wow, this is a real need. One was I used to work for Anglicare and I was a family therapist and I got seconded to work with some families by another service. And these families, it didn't have anything to do with death and dying, but it did have a lot to do with shock and grief and loss. And that was in the juvenile justice area where they had children or the kids had siblings that participated in horrific crimes. They had the victims of crime for the families. They had juvenile justice for the offender, but the families of those who offended were quite lost and it was that you know my brother did a terrible thing and I have to go to school on Monday and everyone knows or this is not the child that we brought up. I really learned about naming and working through and sitting with speaking the unspeakable. You don't talk about those things. There's such shame or it's just not discussed. So that was just learning how to sit with and discuss the hard things and the really difficult things and the things that nobody wants to talk about and the pain of that and the loss of family identity, loss of siblings, loss of child in the way that. That they knew them. So that was one thing that shifted me a little bit. The other one was more personal. I have four daughters and one of my daughters was severe asthmatic and I know asthma is a pretty common thing. She was having collapsed lungs, needing to be flown to the children's, those sorts of things. That was all fine. We took it all in our stride. And one day I was curled up with her after a particularly horrible asthma event, she said to me, Mum, am I going to die and what will it be? Like this was almost 30 years ago and it was, wow, I don't know how to answer that. I have no idea how to answer that. And I was absolutely pained because I knew, but I don't know if I quite had the wherewithal or the courage to begin to explore that with her. She would have been about 12, I think, at that time. So, I naturally went around and spoke to a pediatrician who I had also done professional work with. And he said, look, you know, the thing is I would refer you, but the problem is I would refer you to you. And I thought, well, I'm not any use to me right now. So, I just went on this journey. How do you do it? How do you have the discussion? How do you, again, speak the unspeakable that you're too scared to put words to? And I think they were probably the two things that I thought, yeah, let's give words to the unspeakable. Dying. And 30 years ago, what did you find? Well, and that was it. I didn't find anything much at all. Yeah. It wasn't. I mean, we weren't even using the internet then. It was almost non-existent. So, it was literally about having conversations. It was literally about. Wrestling myself and my whole, I don't want to talk about this because it's too painful, and challenging myself in that and admiring her, Hannah, for actually asking the question. I thought, what a gutsy question. I mean, the other question she did ask me is, if I have asthma, will I still be able to drink wine when I grow up? So, you know, it was quite a combination of questions, but it was just sitting with… Yeah. So, it was sitting with and listening and talking. I think the other thing was one night, I had come home from the hospital. It was about two o'clock in the morning or something. And her little sister was sitting on the step when you walk into the house. And it's two o'clock in the morning. And she had stayed up all night to make sure I got home and make sure her sister was okay and recognising the impact on the other girls. And, you know, she would have been about eight, I think, or nine. I think two days later, I had to take her to the doctors for something. And she actually had shingles from the stress and recognising the impact that it has. I think they were the two things. And then I saw a position advertised with very special kids, which does deal with paediatric palliative care, and they needed a representative on the peninsula. That's when I applied for the position and started working much more closely and loved every minute of it. It just felt like the right fit. And do you want to tell us a little bit about that organisation? Very Special Kids is an organisation that works with children within Victoria that are terminal. They have a volunteer program, hospice and the family support workers that work closely with them to help navigate the system and support them throughout that whole process as well as bereavement support afterwards. woods. It is that whole thing about both the palliative care I do now and the palliative care at VSK was very much around, it's not just the patient. It is around, well, how are the family going? How is everyone else navigating this? And that naturally appealed to my family therapy training, which is that it's the whole unit that's being affected here. And it's the whole unit that's changing. And it's the whole unit that are trying to find a balance. It's not just a medical system and a patient. So that's really what Very Special Kids does in those areas. And how was that? That must have been quite challenging, or you must have had very strong boundaries because working with children that were the similar age to your own children, I know I personally couldn't do it. How did you navigate that space? And I think you're right. The children were the same age as my kids. I went into it already because of previous work experience with strong personal and professional boundaries. The thing that stood out to me is if I had spent the day or the morning working with, say, an eight-year-old little boy whose body was just ravaged with cancer, and then going home and seeing my eight-year-old daughter and seeing someone healthy and running around, I had to be quite mindful of. But it literally is personal and professional boundaries but it's not negating the fact that I am a mother and that brought with it good understanding of ages and stages of development or the challenges of parenting let alone the challenges of parenting a sick and potentially dying child. No when to turn off. Make sure that your own support networks are really solid, that you have really good self-care strategies in place, that you have rituals and ways of holding yourself so that you can do the work that you do. I mean, anyone who works in the counselling field, and especially in terms of, counselling and dying, I am my best tool. So if I was a carpenter or a mechanic, I'd make sure my tools were fine. I am my tool. I have to make sure I'm fine because if I'm not fine, I can't work. If I'm not well balanced, then you can create damage as opposed to opportunity for engaging and healing, those sorts of things. What are some of those things that you've adopted that you've learned over the period of time? You know, 25 years is a long time to have been working in the palliative care space. So what is it that keeps you grounded and what is your self-care go-to's? I think is having a rich life out of work that is engaging. I thoroughly, my latest is art and so I'm really enjoying just playing with art and creating. I think nature is another really important thing. Strong friendships, really strong friendships and just balancing it out with everyday stuff. I'm not big on any one thing. It is actually what's going to help me feel good today? What do I want to do today? And what's going to nurture me today? What's going to feed my soul today? And that might be a coffee with a friend or it might mean pulling out some water paint, or it might mean a walk, or it might mean playing in the sandpit with the grandkids. It might mean any of those things. So I'm not stuck or rigid in any particular way. I'm just happy to go with the moment, really, and make sure that I take the moment. But it seems to be that in itself, it seems to be your ritual, because you're consciously asking yourself every day, what are you going to do that makes you feel better? So that's obviously something that's become almost innate to you. Yeah, yeah. I did have a particular ritual and, you know, I would still use it. If I've been working closely with someone and they die, you know, at any point in time, you might have, I don't know, 30, 40 clients. I would stand by, because we live on the peninsula, go down to the beach, watch the waves come in. I'd write their name in the sand and I'd just ponder until their name was washed away. And that felt like just giving myself the moment and the person the respect that they need in my own private ritual to just, yeah, okay. That was what it was and, you know, this is what I learned and this is what I so admire about the people or the person who died and just give it its moment, not rush to the next or the next or the next. That is such a beautiful thing and it doesn't cost anything and it leaves me with such a beautiful imagery as well of just that natural wave motion. Absolutely. I think from a professional point of view, you know, good clinical supervision and those sorts of things and a supportive work environment and good work culture are all really important for the balance as well. You know, it is very much a personal thing. But when you work for an organisation, I think it's also, you know, choosing that healthy environment, healthy working environment. So you started off with very special kids. And then where did you move to? So I took some less than a year out from palliative care because I thought, you know, maybe I need to step out. And I was gone six months and thought, no, I miss it. So I couldn't wait to get back to palliative care and really knew then that I loved the fit. So then went on to Peninsular Home Hospice, which was then called Peninsular Hospice Service. So have been with them for 17, 18 years now. You know, that's naturally the longest time I've ever stayed in a job. And it is because I played a number of roles in the service, but yeah, very happy doing and believing in what the service offers, believing in our values and the ethics of the way that we work and the incredible team that I work with. So I have been here. And only in the last two months, I always knew, so I was in management for a while and especially over the COVID period. And there was so much to think about and so much to balance. We're a state government funded service and we have to have accreditation and all those sorts of bigger organisational things that need to happen. And I was really honoured to be able to play a part in the leadership of an organisation and influence what we look like and how we function over that time but I always knew that my first love was practice and that I would always go back to that and the timing was right so I've stepped back into that in just the last couple of months and fits like a glove it just yeah it's exactly where I want to be. And was it that love of practice that drew you back when you refer to that six months that you had off you were supposed to have a year off but you came back after six months. Was it that love of practice or what else was it that drew you back into the palliative care space? When I was not in palliative care for just over six months I was with a particular program that was looking at separation, family court, domestic violence, those sorts of things and my earlier work was often along the lines of parenting, child protection, mental health, domestic violence. I think, you know, death is no respecter of culture or. Demographics or anything like that. And so, we see a whole range of clients, but there's something different about clients and families when someone's dying and the everyday other sorts of counselling that would be taking place. And I think what that would be, it's like it brings life into focus for the people involved. And it is like we don't have time to waste. And so it is more productive. People are in there. And majority of time, most of the time, people want to do the best job they can, and they've got one chance to do it. So you're working with people that have incredible resources that they don't necessarily know that they have. and supporting them to discover that. And sure, they, you know, people get divorced. People are still, you know, there's still domestic violence involved. There's still all of those other things. But there's also a very sharpened focus that we don't have time to waste and I'm dying. I don't have time to not be real. And I think that is what I find just incredible, that the incredible sort of jumping in as honest as they can be. Whereas in other sort of work, it could be quick to blame someone else, quick to blame, say it was someone else's fault, the area of divorce and separation, where people just seem to be taking a little bit more individual responsibility or wanting to, struggling to. And yeah, they know they have one chance. They don't want to waste their time. That's for some, but other people don't even want to go there. They don't even want to talk about it. And that is a choice and that is as okay as facing it head on. I mean, I think it's really important to say that both. It is all okay, but I have found a very big difference in community counselling and counselling specifically around palliative care and bereavement. Can you tell me a little bit about Peninsular Home Hospice, how it works, how it sort of is different from perhaps what people may have as a perception of palliative care with a hospital bed and limited sort of life-limiting illness and only a few weeks to go. So if you can talk me through that, that'd be great. Peninsula Home Hospice, I think we have our 40-year anniversary this year. And I think it's really important to recognise that we grew out of people in the community seeing their own need and raising the funds to build the service. So we're not auspiced by a hospital or we come out of what the community. Palliative care, I mean, first of all, when people think of palliative care, they often think end of life. And I don't want a palliative care service because that means there's no hope and I'm going to die really soon. Palliative care is not just about dying. It is about quality of life. It is about planning. It is about choices. It is about, and when I say quality of life, I mean, research has shown that those that have an early referral to palliative care services do have a better quality of life. So within our service, we see people in their homes, not in a hospital environment. It literally is working with them during this time of their life. So working both with the client and with the families and carers. What we do is specialist palliative care. So that means we don't become the only service that's in there. We just add value to what might already be in there. So if they have other services, providing services, and it could be like home care, or it could be nurses from another service providing wound care, those sorts of things. We don't take over that, but we just add value in the area of palliative care. That is really about symptom management. And when I say symptom management, it's not just, you know, I'm feeling sick or I'm in pain or I can't breathe properly. but it is around feeling anxious, feeling scared, being depressed, losing hope. It could be about my whole body is changing and I can't depend on it like I used to and how do I come to terms with that or I was really active and the fatigue from either the treatment or the medication or the disease is making me feel useless. So it is a holistic approach to care. So we have a nursing team that will assess and look at symptoms. And then we have the counselling and allied health team, which will also assess and work with both the ill person and their family to go through this part of their life with them. We also have a volunteer program and volunteers are an incredible support for families. They offer a. Companionship. A lot of people might not be living with anyone. So it is, I can't get out anymore, but I've got someone dropping in to see me. It could be about companionship where I know I'm dying, but everyone else is too scared to name it. So I can actually talk to the volunteer about it because they're not going to shy away. Or it could be everyone's so tense and wanting to talk about dying. I just want someone to watch the footy with me who barracks for the same team and brings me some normal into life. Volunteers are a great support and volunteers can also give carers respite. So carers, you know, getting some time out to take care of themselves, get their hair cut, play the game of golf that they want, attend the gym, have a coffee with a friend, but being not confident to leave the person who's on well on their own. So we can have a volunteer pop in so that they can do those things. We also have two palliative care physicians. And again, we don't take over in terms of medical care. We work really closely with their GP and the doctors that know them really well. So it could be, you know, working with the doctor, providing support and advice, the GP. In terms of medications, it could be reviewing all of that, but it is liaising well with the people already in there and not duplicating services. Does that answer your question in terms of what we do? Yeah, it does. So just say I was diagnosed with a life-limiting illness, say cancer. I don't know what the outcome's going to be. I choose to go through treatment. At what point would I reach out to you? Okay, good question. I think it's, People can be on treatment at the same time as with us. We do have clients referred who we will then discharge and they may come back in a year or two, but things have stabilised. So it's when there's specialist palliative care needs. So when there's something that isn't being managed that can't be managed by the services already in there, that would be when there's a referral or people are contacting us. It is when there is treatment, but it's palliative treatment. So it's not going to cure the disease, but it may prolong life for a while longer, or it may make the symptoms less distressing, but it's not going to cure it. So it really is needs-based. So what is the need that we can add value to? What are the areas? Because not everyone who is palliative do we see because, you know, the services are already in there or their doctor, their family, the other services that they might be getting in to help them at home have got it all under control and we're not needed. So it's when what is different here that we need to have an intervention is what it's about. And it must be so unique for each individual person because of obviously it seems to be that when you look at it from what you were saying with a holistic perspective, that it depends on who's making up your circle around you to support you, doesn't it? Absolutely. Yeah. So that's obviously quite unique. Yep. I think that's one of the things about being cared for in the community and dying at home is the place of that broader community and supports. And so working with those arms is what makes it possible for the person to die at home. I mean, we have had people die at home who have lived alone. And have been able to support that person to make that happen. But that's very individual dependent and it's dependent on the resources because we do come in and out, but we don't stay overnight. We are available to contact overnight. So we're a 24-hour service and we visit during the day, but it really is the community of supports around the person as much as it is around a specialist palliative care service being involved. And what do you see from your perspective as being some of the biggest challenges either the client faces and the families face when facing this situation? Oh, and again, for a client, it's very individual because the bottom line is for a client, it might be, I just don't want to die. That's it. So it doesn't matter what you put in, what you do, they don't want to die. and that's the biggest challenge for them is that they're going to die and just not wanting to die. But for someone else, the individual challenge might be, look, I know I'm going to die, I know I want to stay at home, but I know I can't do this unless I can get services and that might be, say, through my aged care or community home supports. Their staying at home is dependent on the availability of that And if it's just not available, even though they're eligible, it might not be available. So that's a challenge. I think for carers, the biggest challenge is being recognised as a valued member of the caring team. It's being recognised that what they see and do every day is so important to the person that they're caring for. The challenge there for them is feeling heard. And I think the other challenge there is they're just plain exhaustion. It is very tiring work and getting space and time out that they trust to get the sleep that they need. And they're so often putting their own lives on hold, and that means their own health on hold, that, you know, it's incredibly exhausting. So I think that's a huge challenge for carers. I think what comes to mind is the numerous stories that I've heard from various people over periods of time where it's not uncommon for people to go and care for a loved one and they have to actually totally relocate for a period of time what might seem initially maybe a month or a few weeks and then that billows out to be quite an extended period of time where effectively they like you were saying they have sort of put their life on hold to care for this person and there must be a lot of emotions mixed up in that because also at the same time like you were saying they're not the client that's receiving the treatment per se so it must be really difficult to be in that situation. I often think of you know predominantly daughters that that come to care for fathers or mothers from interstate or whatever. And they've left their children back there with their husbands. And, yeah, they do have their own families. And, you know, we have had people come flying from overseas to do the caring to then try and pick up lives again back in the country that they were living in. The emotional toll and not only their loss in terms of what they're missing in terms of their personal life, but I think also one of the other biggest challenges is the change in the nature of the relationship. So suddenly, you know, you're a daughter and you're taking care of a dad and you find yourself having to help him go to the toilet. And it's not a role that you necessarily saw yourself as taking and so that changes the nature of the relationship or if it was a wife and a husband suddenly the husband is doing things like hygiene care when they had a strong sexual relationship and now it's changed to that sort of caring and the identity and the nature of what their relationship was and what it's become and supporting people through that. And my hat off to the people that do this caring with such commitment and, you know, a client feeling so vulnerable. There's an intimacy around that sort of care that I don't think, and that's one of the things I see is I don't think they recognised it in themselves. And once they've done it and achieved it, that sense of pride in that is one of the beautiful things to see, which is, yeah, I can do this. And I love my dad or my mum or my husband or my wife or my adult child. And it has changed, but it's made it so much more special. And there must be a sense of that grief of, you know, before even death has even occurred is that that change of that relationship, that dynamic is different. And also, you know, we're so easy to define ourselves by the hats we wear or the titles we give ourselves. So to have a big shift in that, say, when you were talking about the daughter that has to come care for the father, you know, she may be a very high-powered businesswoman and then be in this very different role. So it's quite a challenging time. And obviously, it's generally a condensed period of time that you see this, is it, Inga? Look, for some, they've been caring a long time before they come to a palliative care program. But I think the identity issue is very big and very real. And how I think one of the challenges for us as professionals is how we name that and how we word that and how I know myself, I went, I had to go to the hospital for something. And, you know, one of the first questions I was asked was, you know, who's your carer? I'm thinking, I don't have a carer. I don't want a carer. I don't need a carer. I just refuse to answer the question. I want my independence and I've got a next of kin and, you know, you can have a next of kin, but you can't have a carer because there isn't one. I was shocked about how balked I became to even name a carer. Which I found quite fascinating. And I think the other thing is that people are named carers And we just make the assumption that they're caring. And do we really ask them if this is what they want to do? That sense of feeling obligated to do it because I am his wife or I am his mother or I am the dad and, you know, How much do you want to do? How much do you want to be involved? How do you want us to see you? Do you mind the label, carer? And if, you know, they're as important than understanding their story and what they bring to the relationship and what they bring in terms of their ability to care. And, you know, I, you know, often hear, look, I can do this, this and this and this, but I can't do that part. And I really appreciate the honesty again to say, yeah, no, it's not going to work. I can't do that bit. And that might be giving medications or it might be personal hygiene. It's okay to say, that's not okay. I can't do that. But it really is how often do we ask? We just make the assumption, you know, they're married. They live together. They'll be fine. He'll do it. She'll do it. Yeah it's so funny that you just you saying that is that it's just always assumed isn't it exactly the questions never asked or you know like I think in family dynamics you know there's always the one that's going to be the responsible one always the one that you know maybe named the executor but you know what was interesting when I had an interview with Greg Russo who was the wills and estates lawyer is he's saying that that person may not necessarily be the right person for that particular job. So it's interesting that we don't generally always have the skills to be the carer or the executor or whatever we need to be yet in this role because there's no conversations generally or no open planning and you know really thinking about this is that. Most of us don't have the skills for some of these jobs. Look, absolutely. I think it is skill, but it is also desire. It is also respecting. And it goes the reverse way too. I mean, we often have husbands and wives who may have been caring for each other for a really long time. And their choice is to die in a palliative care unit or in hospital. And I've often heard that for them that was the best choice because they didn't have to be a carer anymore. They could just sit with them in hospital and be the wife or be the husband without, remember the medication, what is he eating, who's popping in to see them. I've got to change the sheets. It is actually someone else is caring for them for the moment and I can just be with them, just be their wife, their partner, their friend, without that pressure. And I think it's really important to recognise that that's just as valid. And it's not spoken about, is it, really? No. And it was only fairly recently I was speaking to someone who had popped in and I asked them, do you want to be the carer? And they said, no one has ever asked me. And they had been caring for over 20 years. And I said, well, let's look at that. Let's unpack that over the next couple of sessions and recognising and breaking down what she can do, what she felt competent doing, where she felt she was struggling, where she could ask for support in those areas. But unpacking all of that so that she could be the person that she wanted and needed to be for her partner during this time. Wow. Well, I think that that's really important to ask those questions. I'm sure that, you know, there'll be someone who will do a PhD on it at some stage. But just to actually take that burden of responsibility off and actually ask someone, A, do you want to do this? And B, you know, you're not expected to be perfect at it. Where do you need support, you know? Absolutely. I mean, the success of palliative care in the home is based on so much more about how we support carers because they're doing the bulk. Even if we came in daily, in the initial stages, we're in for an hour or two a week and they're doing the caring all between that. And as it gets closer to end stage, that changes, but they're the one doing it. They're the one, we come in with the specialist palliative care skills, but they know the person. They know how to care better than we do in that we know disease and disease trajectories and medications and those sorts of things quite strongly, but it has to be a collaborative relationship through that caring process. And it also points out to me just how important it is to you know perhaps ensure that that carer has a support network if they can around them at that early stage because they are doing everything by themselves at that early stage it's you know it's that classic of you know everyone wanting to say goodbye in the last few days when someone is, you know, is dying. But it seems to me that in the process it would be great if a lot of people were there a lot earlier to help out as well. Absolutely. I think, I'm not sure if you've heard of it, it's the Help app. Yes, yes. Yeah. And that whole thing about compassionate communities and thinking outside about how we support each other in those areas long before it's the pointy end of dying, both pre-death and during bereavement. When the actual dying and the funeral and there's those really intense markers. What do we do in between those intense markers? That intense marker of being diagnosed, being told that you're palliative, these key points and people usually step forward at those. But it's the in-between times and it's the very practical, nature of support. So important. So important. I heard a story. I've spoken to Dr. Andrea Grindodd, who is responsible for creating the Help app and worked with Palliative Care Australia and La Trobe University. And I'll put a link to it in the show notes. And just the simple practicality of thinking about when husband and wife were, I think the husband was terminally ill. And it was just putting a call out via this app so you create your inner circle and your outer circle so you're not sending multiple text messages and just the simple thing of driving lessons for their teenager. You know, something really practical like that where we have to get the 200 hours up, you know, or 120, I can't remember now, it's only been a few years and I've forgotten but I just thought that was a really great use of something like that which still is life and has to go on but someone can help when it's not like a milestone moment you know compassionate communities is an amazing principle which really started overseas in the UK that model is something that we can also include in the show notes that I know that there's a lot of work being done in Western Australia about trialing that particular model where it really is leaning on people within your community to actually call out who need support in services and in really everyday life. And that's a really beautiful model that has worked very, very well over there. And I think it's had quite a bit of success here in Australia as well. So yeah, things to look forward to, isn't it? But I think it happens. We see it happening more informally and it is, you know, neighbours. Someone lives alone. I was visiting a client fairly recently and we were chatting and And the carer had her own health issues and recent operations and was having difficulty working. As I was there, neighbours dropped in. I'm going to the shop. What do you need? It's that. And often, again, people that live alone, it's often the neighbours that are the support people that drop in and help with those really practical things. For young parents, it's, you know, I'm too sick to drive to school and my husband still needs to work. Let's pull a drive the kids to school roster with the other mums it's all those yep life continues yeah yeah it really does and you've seen palliative care at both ends of the spectrum with age what are the things that are consistent and what are things are very particular to the age groups that you've noticed yeah. So the thing that stands out in terms of the age groups is ages and stages, ages and stages of development. And I'm not just talking about childhood development. I'm talking about a young family with a new baby who is going to die and where that young family is at in their stage of development as a family. I think ages and stages and the generational differences as well. So younger people being, you know, very tech savvy, being able to access resources, research, and Dr. Google, I think, gets a bit of overdrive traffic and wanting to be really active participants in their own care. And for some of the older generation, it could be around, well, you know, I trust my doctor and he said, take this, so I'll just take this. So there's difference in thinking right throughout the different sort of ages. And, you know, for a child, you know, not recognising that dying means or dead means forever. So I think there's that, that, a lot of difference around depending on generationally where they're at in their own ages and stages. And for older people who, you know, I was working with someone fairly recently and, you know, they said, look, I've been ready to die for the last 20 years. This is not new and I'm all set to go. So there's that and age very much determines age. The thing about a young person dying is that's not supposed to happen. That's not how life works. Whereas an older person dying, it's that leaning more into, and you hear it publicly all the time, you know, they've had a good life. So, those things, I think what's consistent across them all, but it just shows itself in different ways, is how do I make sense of what's happening? How do I do the best job that I can with what I have? And the recognising of sort of this one chance to get it right. I think they're consistent across in terms of caring and dying. The views of death, the understanding of death, all of that's different all the way through. The meaning that people find in it, looking for meaning is probably consistent. What meaning they find in that is different generationally as well, I think. And when you're outside or one of those out of circles of support, you know, what do you suggest would be the way in which you can assist some, you know, supporting either the carer or the family? You know, what are some things that we should say, shouldn't say, given your experience? I mean, there's a lot of really good books. around what words do I use or something like that. Fundamentally, I think the real thing is about being authentic, being present and being honest. And that could be saying, I don't know what to say. That's okay. I think so in terms of the words that you use is being, I mean, the last thing people want to hear is cliches. That is not helpful. And being really conscious of yourself, am I anxious here and I'm going to say something just to help myself feel better? Or am I really in tune with myself and being honest with the person? And so I think that's really important from an artist is recognising it, acknowledging it and taking the person's lead. They'll, yeah, they'll lead, but they'll lead and respond to your openness and, you know, what's important for them. I think offering support and help is an interesting one because support and help is incredibly important, but sometimes people don't even know what they need because they haven't died before. And the same with Kira, sometimes I don't know what I need because I haven't done this before and not even sure how to put words to it. So sometimes it can be about being proactive without being intrusive. So it could be dropping a meal off, but just dropping it off at the front door and going, not expecting to come in, have a cup of tea, you know, take up more time. And what's natural for you? What's your natural caring style? So I think all of those are important. It's about being open. It's about listening, not using cliches, being aware of your own sort of like, oh, I don't know what to say. And I think that's fine to say though, isn't it? You know, I don't know what to say. It's... Because I think for the default position, that's when the cliches come out, isn't it, very quickly? I think even if you don't say, I don't know what to say out loud, I'll say it to yourself and you recognise, yeah, I actually don't know what to say. But more than anything, I want you to know that I do whatever it is to support you. And I really feel for you right now. I'm so sorry. It is that really genuine, you know, what are you? What is happening for you? and they're going to appreciate the honesty more than cliches or sometimes people also just don't want it like it could be, yep, thanks. I don't want to talk about it or, you know, that it is, you know, you know the person, what's their personality like, what's trying to guess what would be helpful and asking them if it is helpful. Would it be helpful if I as opposed to a more open-ended I'm here for support just call me they're not going to initiate necessarily um yeah I heard someone mentioning you know offer to help but only what you're going to follow through with so and being specific so it's sort of like I'm going to the supermarket do you need anything from the supermarket yeah let me know in the next half hour so therefore it's very clear yeah yep and absolutely i would agree with that wholeheartedly um uh and then they think practically well i need this that and the other thing and they're going anyway so it's not an inconvenience um and it's pretty straightforward because you know when you're under that sort of pressure you might not even realize that you don't have things in your cupboard and suddenly it's like, oh, yes, they're going, what do I need? And tell me, 25 years, there's obviously been things that certainly keep you in the space. You've mentioned a few of them. But what do you find the most rewarding aspect of the work that you do, Inga? I think in leadership and clinical supervision as well as seeing clients, I think for me. Measuring was this useful or is this successful or whatever and in palliative care there's often a lot of feedback around the service is fantastic you guys are incredible all of those sorts of really strong statements and that's sort of your angels the interesting thing for me I get such a warm feeling of success or this is we're on the right track when I hear families talk about or I hear the person that's ill talk about we did this or I've done that or I've had this discussion or I've met this challenge or this is them themselves and I think you know I measure the success I think of what I'm doing is when I become wallpaper so they don't see me I don't want someone to remember in five years time or 10 years time, oh, remember Inga, she was the worker, da-da-da-da. I know I've succeeded. It's when they, oh, remember when he did this and he did that. And remember we were able to do this. And so there's a sense of pride, achievement, strong remembering. There's been a discovery of their own growth, be it the client or the family. That's when I feel like I've succeeded. So it's not about being told by clients that it's a great job. It's when I'm wallpaper and they are proud of their great job. That's what means so much to me in the work. That's when it feels like, yeah, we've got this. We're doing it right because they can't even see us. They don't know where we're doing this in the background. What sort of wallpaper would you like to be? Very good question. I was visualising something soft and neutral. Yeah. I kind of, I don't know, I think like, for me, I think it's got like a blue, you know, those gorgeous old velvet ones. Oh, yes. Yeah, like a nice blue velvet with a nice maybe fleur-de-lis on there, I think might fit you in. You know, just subtle, but you know, that would be quite, you know, quite lovely. Now tell me, the government's just actually announced some significant funding in relation to home care and end of life, So where do you see with that sort of injection of funding or at least that acknowledgement that there's need in this space And we all would be aware that we're an ageing population and going to almost double those figures above 65 I think in the next 10 or 15 years, So what do you see as the changing of, you know, home hospice, palliative care services in the home, those sort of offerings? And the demand for palliative care, that's only going to increase phenomenally. One of the biggest things in terms of staying at home and dying at home. Is what it means in terms of the physical demand on carers or the person that's dying and everything that needs to happen. And it's all the practical stuff too. I mean, it's mowing the lawns, it's, you know, cleaning the floors, it's getting the shopping done. And I'm assuming that the funds you're talking about is the fast track of My Aged Care funding. I think it's up to $25,000 for anyone three months who's going to die within the next three months. And that is above what they're already getting, be it if they're on an aged care package. I think that's going to be absolutely crucial. I think everything from getting the hospital beds, paying for the medication. Getting other sorts of services that would keep at home, be it, you know, meals and the hygiene support. You know, if you're not able to shower yourself every day, if you and the fast tracking. So often we'll have clients and they are referred and they will die within the next three months and we'll find out that they have no services involved. Then we'll do all the referrals. And by the time they get assessed, which may take weeks and months, then that they're approved for a package of some sort for these supports, that can take time again. And then it's getting the services in. So the whole thing could be six to 12 months. And often our clients don't have that time. So the fast tracking to support quality of life at home, I think, is absolutely crucial. Absolutely crucial. And look, it's a wise move because if home is not an option, it's a residential aged care facility or hospital. And, you know, those again are from if we're looking at palliative care from a fiscal point of view, they're expensive options. But I think what is delightful about this is that we see all the unmet needs and we can only meet the specialist palliative care needs. And to know that there's something else in that space that's going to support that, I'm just absolutely relieved. Absolutely relieved, even though recognising it's not going to come into place until July 25, 2025. Yeah. But it's well needed. And Inge, just to the point that you were talking about then, so if someone, could take up to 12, 18 months to be assessed and then have services offered to them through the My Care Aged Package? My Aged Care. Thank you, My Aged Care Package. Therefore, should we be encouraging people to try and get that assessment earlier? Absolutely. Even before they really need it, so their house is actually even assessed so what they may need at some stage? What happens is they're only assessed for what's actually happening at that moment. Okay. So they often will need to be reassessed if they're deteriorating. But I think the other thing around that and one of the other challenges, I think you asked me the question around the challenges, is quite a complex system. I find it really complex in terms of, you know, this service does this assessment, this service does that, you get a code for this and you get a code for that. And then that service picked up that code and then all of them need to do assessments and professionals find it difficult to understand, let alone someone who is unwell, maybe not IT savvy, has had so many calls for so many assessments. And some of our clients, they'll get a call saying, yep, we're ready for an assessment. And it's sort of like, I don't even know who you are. And they'll just hang up on them. So they've missed that chance and we'd have to call again and try and arrange it all. So getting it... I mean, knowing it's available, understanding it, getting yourself assessed for supports is wise if you're needing supports at home. But I don't know necessarily if getting it done earlier, inverted commas, is because you'll only be assessed for what you need at that time. If you need to change, you'll need another assessment. Wow. I couldn't even get the correct name of the package right. So it is very challenging for me to navigate. Yeah, I think it's, yeah. Yeah. Like I said, it's navigating for professionals, let alone clients and families and when you're unwell and under stress. Do you have any other thoughts that you'd like to share or advice with a singer? Look, I think the thing is that we are all going to die. Dying is a natural part of life and yet how can we as a community both a professional community as well as a social community do that well I think anything that moves us in that direction that human side of people and the compassionate side of people I think anything that's going to support that and bring that out I think wow go for it so I really do appreciate your work I think information is such a huge part of that education and information is so important because people haven't died before they don't know how to do this yeah you don't get a rule before so thank you for your work Catherine I think it's really important yeah thanks Inga thank you so much for being on the show it's been my pleasure we.

outro: 1:00:32

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