Do You Really Want to Be a Carer? The Question Nobody Asks
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About this episode
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.
Remember; You may not be ready to die, but at least you can be prepared.
Take care,
Catherine
Show notes
Guest Bio
Senior Counsellor and Caseworker from Peninsula Home Hospice
Inge McGinn is a Senior counsellor case worker from Peninsula Home Hospice working alongside specialist palliative care nursing, palliative care physicians and trained volunteers in community palliative care. Inge has worked in Palliative care for 25 years working with including with children, teenagers, young adults and older people. The roles have included, clinical supervisor, manager, clinical family therapist and bereavement counsellor.
Inge is passionate about supporting clients, carers and family to achieve all that is important for them, finding meaning, making choices and promoting quality of life as well navigating the world of loss.
Summary
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.
Transcript
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It was only fairly recently I was speaking to someone who had popped in and
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I asked them, do you want to be the carer?
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And they said, no one has ever asked me.
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And they had been caring for over 20 years. And I said, well, let's look at that.
... Read More
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It was only fairly recently I was speaking to someone who had popped in and
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I asked them, do you want to be the carer?
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And they said, no one has ever asked me.
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And they had been caring for over 20 years. And I said, well, let's look at that.
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Let's unpack that over the next couple of sessions and recognising and breaking
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down what she can do, what she felt competent doing, where she felt she was struggling,
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where she could ask for support in those areas, but unpacking all of that so
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that she could be the person that she wanted and needed to be for her partner during this time.
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intro:
Welcome to Don't Be Caught Dead, a podcast encouraging open conversations about
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dying and the death of a loved one.
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I'm your host, Catherine Ashton, founder of critical info and i'm helping to
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bring your stories of death back to life because while you may not be ready
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to die at least you can be prepared,
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Don't Be Caught Dead acknowledges the lands of the Kulin Nations and recognises
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their connection to land, sea and community.
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We pay our respects to their Elders, past, present and emerging and extend that
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respect to all Aboriginal and Torres Strait Islander and First Nation peoples around the globe.
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So today I have with me Inga McGinn.
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She is a Senior Counsellor Caseworker from Peninsula Home Hospice and she works
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alongside specialist palliative care nursing,
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palliative care physicians and trained volunteers in community palliative care.
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Inga has worked in palliative care for over 25 years. She's worked with children,
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teenagers, young adults and older people.
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Her roles have included clinical supervisor, manager, clinical family therapist
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and bereavement counsellor.
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Inga is very passionate about supporting her
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clients and palliative care and I
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had the privilege of being a panellist with Inga at a recent Dying to Know Day
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event down here on the Mornington Peninsula and I look forward to sharing more
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of her passion and learning how she started when we chat to her now.
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Welcome to the show, Inga. Thanks, Catherine.
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Now tell me, what led you to actually pursue a career in palliative care?
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Really good question. I know we had a conversation over lunch when we were chatting
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with other people from the field.
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And I think you made that statement about, oh, well, you know,
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I've had this experience in terms of dying.
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I don't think I've ever met anyone who hasn't had some sort of experience that
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has led them to palliative care when they take on palliative care as a vocation
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rather than just a job. And I think I'm no different either.
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I don't think I was led and it was definitely not on my horizon when I was working and making choices.
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There was probably two things that stood out and made me think,
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ah, wow, this is a real need.
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One was I used to work for Anglicare and I was a family therapist and I got
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seconded to work with some families by another service.
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And these families, it didn't have anything to do with death and dying,
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but it did have a lot to do with shock and grief and loss.
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And that was in the juvenile justice area where they had children or the kids
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had siblings that participated in horrific crimes.
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They had the victims of crime for the families.
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They had juvenile justice for the offender,
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but the families of those who offended were quite lost and it was that you know
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my brother did a terrible thing and I have to go to school on Monday and everyone
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knows or this is not the child that we brought up.
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I really learned about naming and working through and sitting with speaking the unspeakable.
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You don't talk about those things. There's such shame or it's just not discussed.
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So that was just learning how to sit with and discuss the hard things and the
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really difficult things and the things that nobody wants to talk about and the
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pain of that and the loss of family identity,
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loss of siblings, loss of child in the way that.
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That they knew them. So that was one thing that shifted me a little bit.
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The other one was more personal.
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I have four daughters and one of my daughters was severe asthmatic and I know
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asthma is a pretty common thing.
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She was having collapsed lungs, needing to be flown to the children's, those sorts of things.
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That was all fine. We took it all in our stride.
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And one day I was curled up with her after a particularly horrible asthma event,
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she said to me, Mum, am I going to die and what will it be?
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Like this was almost 30 years ago and it was, wow, I don't know how to answer
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that. I have no idea how to answer that.
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And I was absolutely pained because I knew, but I don't know if I quite had
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the wherewithal or the courage to begin to explore that with her.
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She would have been about 12, I think, at that time. So, I naturally went around
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and spoke to a pediatrician who I had also done professional work with.
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And he said, look, you know, the thing is I would refer you,
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but the problem is I would refer you to you.
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And I thought, well, I'm not any use to me right now.
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So, I just went on this journey. How do you do it? How do you have the discussion?
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How do you, again, speak the unspeakable that you're too scared to put words to?
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And I think they were probably the two things that I thought,
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yeah, let's give words to the unspeakable. Dying.
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And 30 years ago, what did you find?
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Well, and that was it. I didn't find anything much at all. Yeah. It wasn't.
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I mean, we weren't even using the internet then. It was almost non-existent.
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So, it was literally about having conversations.
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It was literally about.
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Wrestling myself and my whole, I don't want to talk about this because it's
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too painful, and challenging myself in that and admiring her,
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Hannah, for actually asking the question.
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I thought, what a gutsy question.
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I mean, the other question she did ask me is, if I have asthma,
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will I still be able to drink wine when I grow up?
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So, you know, it was quite a combination of questions, but it was just sitting with… Yeah.
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So, it was sitting with and listening and talking.
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I think the other thing was one night, I had come home from the hospital.
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It was about two o'clock in the morning or something.
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And her little sister was sitting on the step when you walk into the house.
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And it's two o'clock in the morning.
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And she had stayed up all night to make sure I got home and make sure her sister
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was okay and recognising the impact on the other girls.
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And, you know, she would have been about eight, I think, or nine.
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I think two days later, I had to take her to the doctors for something.
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And she actually had shingles from the stress and recognising the impact that it has.
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I think they were the two things. And then I saw a position advertised with
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very special kids, which does deal with paediatric palliative care,
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and they needed a representative on the peninsula.
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That's when I applied for the position and started working much more closely
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and loved every minute of it. It just felt like the right fit.
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And do you want to tell us a little bit about that organisation?
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Very Special Kids is an organisation that works with children within Victoria that are terminal.
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They have a volunteer program, hospice and the family support workers that work
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closely with them to help navigate the system and support them throughout that
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whole process as well as bereavement support afterwards. woods.
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It is that whole thing about both the palliative care I do now and the palliative
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care at VSK was very much around, it's not just the patient.
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It is around, well, how are the family going?
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How is everyone else navigating this?
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And that naturally appealed to my family therapy training, which is that it's
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the whole unit that's being affected here. And it's the whole unit that's changing.
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And it's the whole unit that are
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trying to find a balance. It's not just a medical system and a patient.
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So that's really what Very Special Kids does in those areas.
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And how was that? That must have been quite challenging, or you must have had
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very strong boundaries because working with children that were the similar age to your own children,
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I know I personally couldn't do it. How did you navigate that space?
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And I think you're right. The children were the same age as my kids.
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I went into it already because of previous work experience with strong personal
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and professional boundaries.
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The thing that stood out to me is if I had spent the day or the morning working
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with, say, an eight-year-old little boy whose body was just ravaged with cancer,
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and then going home and seeing my eight-year-old daughter and seeing someone
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healthy and running around, I had to be quite mindful of.
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But it literally is personal and
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professional boundaries but it's not negating the fact that I am a mother and
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that brought with it good understanding of ages and stages of development or
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the challenges of parenting let alone the challenges of parenting a sick and
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potentially dying child. No when to turn off.
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Make sure that your own support networks are really solid, that you have really
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good self-care strategies in place,
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that you have rituals and ways of holding yourself so that you can do the work that you do.
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I mean, anyone who works in the counselling field, and especially in terms of,
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counselling and dying, I am my best tool.
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So if I was a carpenter or a mechanic, I'd make sure my tools were fine. I am my tool.
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I have to make sure I'm fine because if I'm not fine, I can't work.
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If I'm not well balanced, then you can create damage as opposed to opportunity
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for engaging and healing, those sorts of things.
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What are some of those things that you've adopted that you've learned over the period of time?
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You know, 25 years is a long time to have been working in the palliative care space.
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So what is it that keeps you grounded and what is your self-care go-to's?
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I think is having a rich life out of work that is engaging.
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I thoroughly, my latest is art and so I'm really enjoying just playing with art and creating.
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I think nature is another really important thing. Strong friendships,
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really strong friendships and just balancing it out with everyday stuff.
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I'm not big on any one thing. It is actually what's going to help me feel good
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today? What do I want to do today?
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And what's going to nurture me today? What's going to feed my soul today?
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And that might be a coffee with a friend or it might mean pulling out some water
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paint, or it might mean a walk, or it might mean playing in the sandpit with the grandkids.
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It might mean any of those things. So I'm not stuck or rigid in any particular
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way. I'm just happy to go with the moment, really, and make sure that I take the moment.
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But it seems to be that in itself, it seems to be your ritual,
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because you're consciously asking yourself every day, what are you going to
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do that makes you feel better?
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So that's obviously something that's become almost innate to you.
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Yeah, yeah. I did have a particular ritual and, you know, I would still use it.
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If I've been working closely with someone and they die, you know,
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at any point in time, you might have, I don't know, 30, 40 clients.
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I would stand by, because we live on the peninsula, go down to the beach, watch the waves come in.
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I'd write their name in the sand and I'd just ponder until their name was washed away.
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And that felt like just giving myself the moment and the person the respect
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that they need in my own private ritual to just, yeah, okay.
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That was what it was and, you know, this is what I learned and this is what
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I so admire about the people or the person who died and just give it its moment,
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not rush to the next or the next or the next.
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That is such a beautiful thing and it doesn't cost anything and it leaves me
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with such a beautiful imagery as well of just that natural wave motion.
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Absolutely. I think from a professional point of view, you know,
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good clinical supervision and those sorts of things and a supportive work environment
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and good work culture are all really important for the balance as well.
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You know, it is very much a personal thing. But when you work for an organisation,
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I think it's also, you know, choosing that healthy environment,
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healthy working environment.
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So you started off with very special kids. And then where did you move to?
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So I took some less than a year out from palliative care because I thought,
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you know, maybe I need to step out.
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And I was gone six months and thought, no, I miss it.
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So I couldn't wait to get back to palliative care and really knew then that
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I loved the fit. So then went on to Peninsular Home Hospice,
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which was then called Peninsular Hospice Service.
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So have been with them for 17, 18 years now.
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You know, that's naturally the longest time I've ever stayed in a job.
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And it is because I played a number of roles in the service,
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but yeah, very happy doing and believing in what the service offers,
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believing in our values and the
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ethics of the way that we work and the incredible team that I work with.
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So I have been here. And only in the last two months, I always knew,
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so I was in management for a while and especially over the COVID period.
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And there was so much to think about and so much to balance.
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We're a state government funded service and we have to have accreditation and
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all those sorts of bigger organisational things that need to happen.
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And I was really honoured to be able to play
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a part in the leadership of an
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organisation and influence what we look like
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and how we function over that time but I always knew that my first love was
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practice and that I would always go back to that and the timing was right so
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I've stepped back into that in just the last couple of months and fits like
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a glove it just yeah it's exactly where I want to be.
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And was it that love of practice that drew you back when you refer to that six
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months that you had off you were supposed to have a year off but you came back after six months.
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Was it that love of practice or what else was it that drew you back into the palliative care space?
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When I was not in palliative care for just over six months I was with a particular
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program that was looking at separation,
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family court, domestic violence, those sorts of things and my earlier work was
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often along the lines of parenting,
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child protection, mental health, domestic violence.
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I think, you know, death is no respecter of culture or.
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Demographics or anything like that. And so, we see a whole range of clients,
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but there's something different about clients and families when someone's dying
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and the everyday other sorts of counselling that would be taking place.
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And I think what that would be, it's like it brings life into focus for the people involved.
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And it is like we don't have time to waste.
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And so it is more productive. People are in there.
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And majority of time, most of the time, people want to do the best job they
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can, and they've got one chance to do it.
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So you're working with people that have incredible resources that they don't
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necessarily know that they have. and supporting them to discover that.
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And sure, they, you know, people get divorced. People are still,
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you know, there's still domestic violence involved.
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There's still all of those other things. But there's also a very sharpened focus
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that we don't have time to waste and I'm dying. I don't have time to not be real.
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And I think that is what I find just incredible, that the incredible sort of
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jumping in as honest as they can be.
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Whereas in other sort of work, it could be quick to blame someone else,
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quick to blame, say it was someone else's fault, the area of divorce and separation,
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where people just seem to be taking a little bit more individual responsibility
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or wanting to, struggling to.
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And yeah, they know they have one chance. They don't want to waste their time.
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That's for some, but other people don't even want to go there.
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They don't even want to talk about it. And that is a choice and that is as okay as facing it head on.
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I mean, I think it's really important to say that both. It is all okay,
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but I have found a very big difference in community counselling and counselling
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specifically around palliative care and bereavement.
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Can you tell me a little bit about Peninsular Home Hospice, how it works,
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how it sort of is different from perhaps what people may have as a perception
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of palliative care with a hospital bed and limited sort of life-limiting illness
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and only a few weeks to go.
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So if you can talk me through that, that'd be great.
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Peninsula Home Hospice, I think we have our 40-year anniversary this year.
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And I think it's really important to recognise that we grew out of people in
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the community seeing their own need and raising the funds to build the service.
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So we're not auspiced by a hospital or we come out of what the community.
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Palliative care, I mean, first of all, when people think of palliative care,
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they often think end of life.
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And I don't want a palliative care service because that means there's no hope
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and I'm going to die really soon.
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Palliative care is not just about dying. It is about quality of life.
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It is about planning. It is about choices.
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It is about, and when I say quality of life, I mean, research has shown that
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those that have an early referral to palliative care services do have a better quality of life.
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So within our service, we see people in their homes, not in a hospital environment.
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It literally is working with them during this time of their life.
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So working both with the client and with the families and carers.
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What we do is specialist palliative care. So that means we don't become the
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only service that's in there.
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We just add value to what might already be in there.
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So if they have other services, providing services, and it could be like home
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care, or it could be nurses from another service providing wound care, those sorts of things.
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We don't take over that, but we just add value in the area of palliative care.
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That is really about symptom management.
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And when I say symptom management, it's not just, you know, I'm feeling sick
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or I'm in pain or I can't breathe properly. but it is around feeling anxious,
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feeling scared, being depressed, losing hope.
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It could be about my whole body is changing and I can't depend on it like I
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used to and how do I come to terms with that or I was really active and the
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fatigue from either the treatment or the medication or the disease is making me feel useless.
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So it is a holistic approach to care.
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So we have a nursing team that will assess and look at symptoms.
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And then we have the counselling and allied health team, which will also assess
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and work with both the ill person and their family to go through this part of their life with them.
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We also have a volunteer program and volunteers are an incredible support for families. They offer a.
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Companionship. A lot of people might not be living with anyone.
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So it is, I can't get out anymore, but I've got someone dropping in to see me.
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It could be about companionship where I know I'm dying, but everyone else is
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too scared to name it. So I can actually talk to the volunteer about it because
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they're not going to shy away.
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Or it could be everyone's so tense and wanting to talk about dying.
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I just want someone to watch the footy with me who barracks for the same team
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and brings me some normal into life.
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Volunteers are a great support and volunteers can also give carers respite.
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So carers, you know, getting some time out to take care of themselves,
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get their hair cut, play the game of golf that they want,
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attend the gym, have a coffee with a friend, but being not confident to leave
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the person who's on well on their own.
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So we can have a volunteer pop in so that they can do those things.
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We also have two palliative care physicians.
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And again, we don't take over in terms of medical care.
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We work really closely with their GP and the doctors that know them really well.
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So it could be, you know, working with the doctor, providing support and advice, the GP.
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In terms of medications, it could be reviewing all of that, but it is liaising
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well with the people already in there and not duplicating services.
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Does that answer your question in terms of what we do? Yeah, it does.
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So just say I was diagnosed with a life-limiting illness, say cancer.
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I don't know what the outcome's going to be.
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I choose to go through treatment. At what point would I reach out to you?
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Okay, good question. I think it's,
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People can be on treatment at the same time as with us.
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We do have clients referred who we will then discharge and they may come back
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in a year or two, but things have stabilised.
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So it's when there's specialist palliative care needs. So when there's something
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that isn't being managed that can't be managed by the services already in there,
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that would be when there's a referral or people are contacting us.
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It is when there is treatment, but it's palliative treatment.
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So it's not going to cure the disease, but it may prolong life for a while longer,
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or it may make the symptoms less distressing, but it's not going to cure it.
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So it really is needs-based.
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So what is the need that we can add value to? What are the areas?
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Because not everyone who is palliative do we see because, you know,
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the services are already in there or their doctor, their family,
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the other services that they might be getting in to help them at home have got
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it all under control and we're not needed.
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So it's when what is different here that we need to have an intervention is what it's about.
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And it must be so unique for each individual person because of obviously it
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seems to be that when you look at it from what you were saying with a holistic perspective,
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that it depends on who's making up your circle around you to support you, doesn't it?
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Absolutely. Yeah. So that's obviously quite unique. Yep.
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I think that's one of the things about being cared for in the community and
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dying at home is the place of that broader community and supports.
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And so working with those arms is what makes it possible for the person to die at home.
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I mean, we have had people die at home who have lived alone.
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And have been able to support that person to make that happen.
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But that's very individual dependent and it's dependent on the resources because
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we do come in and out, but we don't stay overnight.
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We are available to contact overnight.
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So we're a 24-hour service and we visit during the day, but it really is the
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community of supports around the person as much as it is around a specialist
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palliative care service being involved.
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And what do you see from your perspective as being some of the biggest challenges
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either the client faces and the families face when facing this situation?
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Oh, and again, for a client, it's very individual because the bottom line is
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for a client, it might be, I just don't want to die.
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That's it. So it doesn't matter what you put in, what you do,
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they don't want to die. and that's the biggest challenge for them is that they're
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going to die and just not wanting to die.
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But for someone else, the individual challenge might be, look,
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I know I'm going to die, I know I want to stay at home, but I know I can't do
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this unless I can get services and that might be,
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say, through my aged care or community home supports.
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Their staying at home is dependent on the availability of that And if it's just
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not available, even though they're eligible, it might not be available.
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So that's a challenge. I think for carers, the biggest challenge is being recognised
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as a valued member of the caring team.
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It's being recognised that what they see and do every day is so important to
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the person that they're caring for.
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The challenge there for them is feeling heard.
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And I think the other challenge there is they're just plain exhaustion.
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It is very tiring work and getting space and time out that they trust to get
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the sleep that they need.
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And they're so often putting their own lives on hold, and that means their own
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health on hold, that, you know, it's incredibly exhausting. So I think that's
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a huge challenge for carers.
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I think what comes to mind is
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the numerous stories that I've heard from various people over
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00:28:11,737 --> 00:28:14,577
highlight & episode:
periods of time where it's not
363
00:28:14,577 --> 00:28:17,337
highlight & episode:
uncommon for people to go and care for a loved
364
00:28:17,337 --> 00:28:21,137
highlight & episode:
one and they have to actually totally relocate
365
00:28:21,137 --> 00:28:24,717
highlight & episode:
for a period of time what might seem initially
366
00:28:24,717 --> 00:28:27,737
highlight & episode:
maybe a month or a few weeks and then
367
00:28:27,737 --> 00:28:30,657
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that billows out to be quite an extended period of
368
00:28:30,657 --> 00:28:33,337
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time where effectively they like you were
369
00:28:33,337 --> 00:28:37,917
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saying they have sort of put their life on hold to care for this person and
370
00:28:37,917 --> 00:28:42,717
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there must be a lot of emotions mixed up in that because also at the same time
371
00:28:42,717 --> 00:28:47,857
highlight & episode:
like you were saying they're not the client that's receiving the treatment per
372
00:28:47,857 --> 00:28:52,017
highlight & episode:
se so it must be really difficult to be in that situation.
373
00:28:52,797 --> 00:28:58,897
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I often think of you know predominantly daughters that that come to care for
374
00:28:58,897 --> 00:29:01,497
highlight & episode:
fathers or mothers from interstate or whatever.
375
00:29:01,677 --> 00:29:05,097
highlight & episode:
And they've left their children back there with their husbands.
376
00:29:05,317 --> 00:29:10,697
highlight & episode:
And, yeah, they do have their own families. And, you know, we have had people
377
00:29:10,697 --> 00:29:16,197
highlight & episode:
come flying from overseas to do the caring to then try and pick up lives again
378
00:29:16,197 --> 00:29:18,657
highlight & episode:
back in the country that they were living in.
379
00:29:19,618 --> 00:29:26,518
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The emotional toll and not only their loss in terms of what they're missing
380
00:29:26,518 --> 00:29:30,918
highlight & episode:
in terms of their personal life, but I think also one of the other biggest challenges
381
00:29:30,918 --> 00:29:33,618
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is the change in the nature of the relationship.
382
00:29:34,378 --> 00:29:40,058
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So suddenly, you know, you're a daughter and you're taking care of a dad and
383
00:29:40,058 --> 00:29:44,158
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you find yourself having to help him go to the toilet.
384
00:29:44,318 --> 00:29:48,218
highlight & episode:
And it's not a role that you necessarily saw
385
00:29:48,218 --> 00:29:51,258
highlight & episode:
yourself as taking and so that changes the
386
00:29:51,258 --> 00:29:54,298
highlight & episode:
nature of the relationship or if
387
00:29:54,298 --> 00:29:57,978
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it was a wife and a husband suddenly the
388
00:29:57,978 --> 00:30:00,918
highlight & episode:
husband is doing things like hygiene
389
00:30:00,918 --> 00:30:07,118
highlight & episode:
care when they had a strong sexual relationship and now it's changed to that
390
00:30:07,118 --> 00:30:13,698
highlight & episode:
sort of caring and the identity and the nature of what their relationship was
391
00:30:13,698 --> 00:30:18,378
highlight & episode:
and what it's become and supporting people through that.
392
00:30:18,658 --> 00:30:27,338
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And my hat off to the people that do this caring with such commitment and,
393
00:30:27,338 --> 00:30:30,318
highlight & episode:
you know, a client feeling so vulnerable.
394
00:30:30,518 --> 00:30:34,218
highlight & episode:
There's an intimacy around that sort of care that I don't think,
395
00:30:34,338 --> 00:30:37,878
highlight & episode:
and that's one of the things I see is I don't think they recognised it in themselves.
396
00:30:37,878 --> 00:30:43,258
highlight & episode:
And once they've done it and achieved it, that sense of pride in that is one
397
00:30:43,258 --> 00:30:46,378
highlight & episode:
of the beautiful things to see, which is, yeah, I can do this.
398
00:30:46,378 --> 00:30:50,798
highlight & episode:
And I love my dad or my mum or my husband or my wife or my adult child.
399
00:30:50,798 --> 00:30:53,958
highlight & episode:
And it has changed, but it's made it so much more special.
400
00:30:55,090 --> 00:31:01,890
highlight & episode:
And there must be a sense of that grief of, you know, before even death has
401
00:31:01,890 --> 00:31:06,850
highlight & episode:
even occurred is that that change of that relationship, that dynamic is different.
402
00:31:06,910 --> 00:31:13,170
highlight & episode:
And also, you know, we're so easy to define ourselves by the hats we wear or
403
00:31:13,170 --> 00:31:14,670
highlight & episode:
the titles we give ourselves.
404
00:31:15,510 --> 00:31:21,130
highlight & episode:
So to have a big shift in that, say, when you were talking about the daughter
405
00:31:21,130 --> 00:31:25,110
highlight & episode:
that has to come care for the father, you know, she may be a very high-powered
406
00:31:25,110 --> 00:31:28,790
highlight & episode:
businesswoman and then be in this very different role.
407
00:31:28,810 --> 00:31:31,670
highlight & episode:
So it's quite a challenging time.
408
00:31:32,070 --> 00:31:39,030
highlight & episode:
And obviously, it's generally a condensed period of time that you see this, is it, Inga?
409
00:31:39,830 --> 00:31:45,550
highlight & episode:
Look, for some, they've been caring a long time before they come to a palliative care program.
410
00:31:45,830 --> 00:31:50,730
highlight & episode:
But I think the identity issue is very big and very real.
411
00:31:52,090 --> 00:31:57,350
highlight & episode:
And how I think one of the challenges for us as professionals is how we name
412
00:31:57,350 --> 00:32:02,030
highlight & episode:
that and how we word that and how I know myself, I went, I had to go to the
413
00:32:02,030 --> 00:32:03,230
highlight & episode:
hospital for something.
414
00:32:03,950 --> 00:32:08,370
highlight & episode:
And, you know, one of the first questions I was asked was, you know, who's your carer?
415
00:32:08,930 --> 00:32:12,690
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I'm thinking, I don't have a carer. I don't want a carer. I don't need a carer.
416
00:32:12,730 --> 00:32:14,350
highlight & episode:
I just refuse to answer the question.
417
00:32:14,530 --> 00:32:19,250
highlight & episode:
I want my independence and I've got a next of kin and, you know,
418
00:32:19,330 --> 00:32:22,530
highlight & episode:
you can have a next of kin, but you can't have a carer because there isn't one.
419
00:32:22,770 --> 00:32:28,070
highlight & episode:
I was shocked about how balked I became to even name a carer.
420
00:32:30,930 --> 00:32:35,110
highlight & episode:
Which I found quite fascinating. And I think the other thing is that people
421
00:32:35,110 --> 00:32:38,750
highlight & episode:
are named carers And we just make the assumption that they're caring.
422
00:32:39,150 --> 00:32:42,770
highlight & episode:
And do we really ask them if this is what they want to do?
423
00:32:42,990 --> 00:32:50,010
highlight & episode:
That sense of feeling obligated to do it because I am his wife or I am his mother
424
00:32:50,010 --> 00:32:54,410
highlight & episode:
or I am the dad and, you know,
425
00:32:55,127 --> 00:32:57,907
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How much do you want to do? How much do you want to be involved?
426
00:32:58,427 --> 00:33:00,727
highlight & episode:
How do you want us to see you?
427
00:33:00,907 --> 00:33:03,207
highlight & episode:
Do you mind the label, carer?
428
00:33:03,467 --> 00:33:10,947
highlight & episode:
And if, you know, they're as important than understanding their story and what
429
00:33:10,947 --> 00:33:15,987
highlight & episode:
they bring to the relationship and what they bring in terms of their ability to care.
430
00:33:16,367 --> 00:33:20,687
highlight & episode:
And, you know, I, you know, often hear, look, I can do this,
431
00:33:20,787 --> 00:33:25,487
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this and this and this, but I can't do that part. And I really appreciate the
432
00:33:25,487 --> 00:33:28,847
highlight & episode:
honesty again to say, yeah, no, it's not going to work.
433
00:33:29,967 --> 00:33:35,747
highlight & episode:
I can't do that bit. And that might be giving medications or it might be personal hygiene.
434
00:33:37,627 --> 00:33:42,727
highlight & episode:
It's okay to say, that's not okay. I can't do that. But it really is how often do we ask?
435
00:33:43,007 --> 00:33:46,107
highlight & episode:
We just make the assumption, you know, they're married. They live together.
436
00:33:46,307 --> 00:33:48,567
highlight & episode:
They'll be fine. He'll do it. She'll do it.
437
00:33:49,547 --> 00:33:53,027
highlight & episode:
Yeah it's so funny that you just you
438
00:33:53,027 --> 00:33:56,867
highlight & episode:
saying that is that it's just always assumed isn't
439
00:33:56,867 --> 00:34:00,387
highlight & episode:
it exactly the questions never asked or
440
00:34:00,387 --> 00:34:03,707
highlight & episode:
you know like I think in family dynamics
441
00:34:03,707 --> 00:34:08,187
highlight & episode:
you know there's always the one that's going to be the responsible one always
442
00:34:08,187 --> 00:34:13,067
highlight & episode:
the one that you know maybe named the executor but you know what was interesting
443
00:34:13,067 --> 00:34:17,307
highlight & episode:
when I had an interview with Greg Russo who was the wills and estates lawyer
444
00:34:17,307 --> 00:34:23,307
highlight & episode:
is he's saying that that person may not necessarily be the right person for that particular job.
445
00:34:23,527 --> 00:34:27,987
highlight & episode:
So it's interesting that we don't generally always have the skills to be the
446
00:34:27,987 --> 00:34:34,627
highlight & episode:
carer or the executor or whatever we need to be yet in this role because there's
447
00:34:34,627 --> 00:34:42,027
highlight & episode:
no conversations generally or no open planning and you know really thinking about this is that.
448
00:34:42,840 --> 00:34:47,460
highlight & episode:
Most of us don't have the skills for some of these jobs. Look, absolutely.
449
00:34:47,780 --> 00:34:52,260
highlight & episode:
I think it is skill, but it is also desire.
450
00:34:52,860 --> 00:34:59,340
highlight & episode:
It is also respecting. And it goes the reverse way too.
451
00:34:59,520 --> 00:35:05,620
highlight & episode:
I mean, we often have husbands and wives who may have been caring for each other for a really long time.
452
00:35:05,740 --> 00:35:10,180
highlight & episode:
And their choice is to die in a palliative care unit or in hospital.
453
00:35:10,180 --> 00:35:16,640
highlight & episode:
And I've often heard that for them that was the best choice because they didn't
454
00:35:16,640 --> 00:35:17,860
highlight & episode:
have to be a carer anymore.
455
00:35:17,860 --> 00:35:21,660
highlight & episode:
They could just sit with them in hospital and be the wife or be the husband
456
00:35:21,660 --> 00:35:27,500
highlight & episode:
without, remember the medication, what is he eating, who's popping in to see
457
00:35:27,500 --> 00:35:29,020
highlight & episode:
them. I've got to change the sheets.
458
00:35:29,580 --> 00:35:34,340
highlight & episode:
It is actually someone else is caring for them for the moment and I can just
459
00:35:34,340 --> 00:35:41,740
highlight & episode:
be with them, just be their wife, their partner, their friend, without that pressure.
460
00:35:41,740 --> 00:35:45,500
highlight & episode:
And I think it's really important to recognise that that's just as valid.
461
00:35:46,380 --> 00:35:49,020
highlight & episode:
And it's not spoken about, is it, really?
462
00:35:50,480 --> 00:35:56,300
highlight & episode:
No. And it was only fairly recently I was speaking to someone who had popped
463
00:35:56,300 --> 00:35:59,840
highlight & episode:
in and I asked them, do you want to be the carer?
464
00:36:00,360 --> 00:36:04,040
highlight & episode:
And they said, no one has ever asked me.
465
00:36:04,400 --> 00:36:09,700
highlight & episode:
And they had been caring for over 20 years. And I said, well, let's look at that.
466
00:36:09,800 --> 00:36:14,440
highlight & episode:
Let's unpack that over the next couple of sessions and recognising and breaking
467
00:36:14,440 --> 00:36:20,200
highlight & episode:
down what she can do, what she felt competent doing, where she felt she was
468
00:36:20,200 --> 00:36:24,460
highlight & episode:
struggling, where she could ask for support in those areas.
469
00:36:24,740 --> 00:36:29,960
highlight & episode:
But unpacking all of that so that she could be the person that she wanted and
470
00:36:29,960 --> 00:36:33,320
highlight & episode:
needed to be for her partner during this time. Wow.
471
00:36:33,935 --> 00:36:37,555
highlight & episode:
Well, I think that that's really important to ask those questions.
472
00:36:38,475 --> 00:36:43,075
highlight & episode:
I'm sure that, you know, there'll be someone who will do a PhD on it at some stage.
473
00:36:43,275 --> 00:36:48,975
highlight & episode:
But just to actually take that burden of responsibility off and actually ask
474
00:36:48,975 --> 00:36:52,775
highlight & episode:
someone, A, do you want to do this?
475
00:36:53,135 --> 00:36:59,675
highlight & episode:
And B, you know, you're not expected to be perfect at it. Where do you need support, you know?
476
00:37:00,155 --> 00:37:07,535
highlight & episode:
Absolutely. I mean, the success of palliative care in the home is based on so
477
00:37:07,535 --> 00:37:11,675
highlight & episode:
much more about how we support carers because they're doing the bulk.
478
00:37:11,835 --> 00:37:16,615
highlight & episode:
Even if we came in daily, in the initial stages, we're in for an hour or two
479
00:37:16,615 --> 00:37:20,775
highlight & episode:
a week and they're doing the caring all between that.
480
00:37:20,875 --> 00:37:25,575
highlight & episode:
And as it gets closer to end stage, that changes, but they're the one doing
481
00:37:25,575 --> 00:37:29,835
highlight & episode:
it. They're the one, we come in with the specialist palliative care skills,
482
00:37:29,855 --> 00:37:31,255
highlight & episode:
but they know the person.
483
00:37:31,915 --> 00:37:38,635
highlight & episode:
They know how to care better than we do in that we know disease and disease
484
00:37:38,635 --> 00:37:43,935
highlight & episode:
trajectories and medications and those sorts of things quite strongly,
485
00:37:44,095 --> 00:37:48,795
highlight & episode:
but it has to be a collaborative relationship through that caring process.
486
00:37:49,515 --> 00:37:52,215
highlight & episode:
And it also points out to
487
00:37:52,215 --> 00:37:56,135
highlight & episode:
me just how important it is to you
488
00:37:56,135 --> 00:37:58,995
highlight & episode:
know perhaps ensure that that carer
489
00:37:58,995 --> 00:38:04,095
highlight & episode:
has a support network if they can around them at that early stage because they
490
00:38:04,095 --> 00:38:08,735
highlight & episode:
are doing everything by themselves at that early stage it's you know it's that
491
00:38:08,735 --> 00:38:13,615
highlight & episode:
classic of you know everyone wanting to say goodbye in the last few days when
492
00:38:13,615 --> 00:38:16,435
highlight & episode:
someone is, you know, is dying.
493
00:38:16,915 --> 00:38:21,275
highlight & episode:
But it seems to me that in the process it would be great if a lot of people
494
00:38:21,275 --> 00:38:24,835
highlight & episode:
were there a lot earlier to help out as well.
495
00:38:25,835 --> 00:38:30,715
highlight & episode:
Absolutely. I think, I'm not sure if you've heard of it, it's the Help app.
496
00:38:31,575 --> 00:38:38,075
highlight & episode:
Yes, yes. Yeah. And that whole thing about compassionate communities and thinking
497
00:38:38,075 --> 00:38:45,515
highlight & episode:
outside about how we support each other in those areas long before it's the pointy end of dying,
498
00:38:45,835 --> 00:38:49,075
highlight & episode:
both pre-death and during bereavement.
499
00:38:49,235 --> 00:38:56,075
highlight & episode:
When the actual dying and the funeral and there's those really intense markers.
500
00:38:56,915 --> 00:38:59,295
highlight & episode:
What do we do in between those intense markers?
501
00:38:59,535 --> 00:39:04,175
highlight & episode:
That intense marker of being diagnosed, being told that you're palliative,
502
00:39:04,375 --> 00:39:08,955
highlight & episode:
these key points and people usually step forward at those.
503
00:39:09,135 --> 00:39:12,695
highlight & episode:
But it's the in-between times and it's the very practical,
504
00:39:13,530 --> 00:39:18,690
highlight & episode:
nature of support. So important. So important. I heard a story.
505
00:39:18,970 --> 00:39:24,750
highlight & episode:
I've spoken to Dr. Andrea Grindodd, who is responsible for creating the Help
506
00:39:24,750 --> 00:39:28,670
highlight & episode:
app and worked with Palliative Care Australia and La Trobe University.
507
00:39:28,850 --> 00:39:30,490
highlight & episode:
And I'll put a link to it in the show notes.
508
00:39:31,090 --> 00:39:38,690
highlight & episode:
And just the simple practicality of thinking about when husband and wife were,
509
00:39:38,850 --> 00:39:41,410
highlight & episode:
I think the husband was terminally ill.
510
00:39:41,670 --> 00:39:47,150
highlight & episode:
And it was just putting a call out via this app so you create your inner circle
511
00:39:47,150 --> 00:39:52,490
highlight & episode:
and your outer circle so you're not sending multiple text messages and just
512
00:39:52,490 --> 00:39:55,790
highlight & episode:
the simple thing of driving lessons for their teenager.
513
00:39:56,530 --> 00:40:00,570
highlight & episode:
You know, something really practical like that where we have to get the 200
514
00:40:00,570 --> 00:40:03,970
highlight & episode:
hours up, you know, or 120, I can't remember now,
515
00:40:04,250 --> 00:40:06,990
highlight & episode:
it's only been a few years and I've forgotten but I just thought that
516
00:40:06,990 --> 00:40:09,810
highlight & episode:
was a really great use of something like
517
00:40:09,810 --> 00:40:13,030
highlight & episode:
that which still is life and has to go on but
518
00:40:13,030 --> 00:40:17,070
highlight & episode:
someone can help when it's not like a milestone moment
519
00:40:17,070 --> 00:40:20,430
highlight & episode:
you know compassionate communities is an
520
00:40:20,430 --> 00:40:23,510
highlight & episode:
amazing principle which really started
521
00:40:23,510 --> 00:40:26,410
highlight & episode:
overseas in the UK that model
522
00:40:26,410 --> 00:40:30,710
highlight & episode:
is something that we can also include in the show notes that I know that there's
523
00:40:30,710 --> 00:40:34,730
highlight & episode:
a lot of work being done in Western Australia about trialing that particular
524
00:40:34,730 --> 00:40:38,870
highlight & episode:
model where it really is leaning on people within your community to actually
525
00:40:38,870 --> 00:40:44,090
highlight & episode:
call out who need support in services and in really everyday life.
526
00:40:44,350 --> 00:40:48,150
highlight & episode:
And that's a really beautiful model that has worked very, very well over there.
527
00:40:48,230 --> 00:40:51,450
highlight & episode:
And I think it's had quite a bit of success here in Australia as well.
528
00:40:51,710 --> 00:40:53,870
highlight & episode:
So yeah, things to look forward to, isn't it?
529
00:40:54,250 --> 00:40:59,070
highlight & episode:
But I think it happens. We see it happening more informally and it is, you know, neighbours.
530
00:40:59,390 --> 00:41:05,730
highlight & episode:
Someone lives alone. I was visiting a client fairly recently and we were chatting
531
00:41:05,730 --> 00:41:12,690
highlight & episode:
and And the carer had her own health issues and recent operations and was having difficulty working.
532
00:41:12,930 --> 00:41:16,390
highlight & episode:
As I was there, neighbours dropped in. I'm going to the shop. What do you need?
533
00:41:17,170 --> 00:41:22,130
highlight & episode:
It's that. And often, again, people that live alone, it's often the neighbours
534
00:41:22,130 --> 00:41:26,830
highlight & episode:
that are the support people that drop in and help with those really practical things.
535
00:41:27,110 --> 00:41:28,930
highlight & episode:
For young parents, it's, you
536
00:41:28,930 --> 00:41:32,030
highlight & episode:
know, I'm too sick to drive to school and my husband still needs to work.
537
00:41:32,030 --> 00:41:34,790
highlight & episode:
Let's pull a drive the
538
00:41:34,790 --> 00:41:37,930
highlight & episode:
kids to school roster with the other mums it's all
539
00:41:37,930 --> 00:41:44,390
highlight & episode:
those yep life continues yeah yeah it really does and you've seen palliative
540
00:41:44,390 --> 00:41:51,810
highlight & episode:
care at both ends of the spectrum with age what are the things that are consistent
541
00:41:51,810 --> 00:41:56,570
highlight & episode:
and what are things are very particular to the age groups that you've noticed yeah.
542
00:41:57,241 --> 00:42:03,281
highlight & episode:
So the thing that stands out in terms of the age groups is ages and stages,
543
00:42:03,621 --> 00:42:05,361
highlight & episode:
ages and stages of development.
544
00:42:05,361 --> 00:42:10,441
highlight & episode:
And I'm not just talking about childhood development. I'm talking about a young
545
00:42:10,441 --> 00:42:18,761
highlight & episode:
family with a new baby who is going to die and where that young family is at
546
00:42:18,761 --> 00:42:20,861
highlight & episode:
in their stage of development as a family.
547
00:42:21,101 --> 00:42:25,741
highlight & episode:
I think ages and stages and the generational differences as well.
548
00:42:25,741 --> 00:42:28,481
highlight & episode:
So younger people being, you
549
00:42:28,481 --> 00:42:34,221
highlight & episode:
know, very tech savvy, being able to access resources, research, and Dr.
550
00:42:34,361 --> 00:42:41,941
highlight & episode:
Google, I think, gets a bit of overdrive traffic and wanting to be really active
551
00:42:41,941 --> 00:42:44,341
highlight & episode:
participants in their own care.
552
00:42:44,701 --> 00:42:48,161
highlight & episode:
And for some of the older generation, it could be around, well,
553
00:42:48,341 --> 00:42:51,441
highlight & episode:
you know, I trust my doctor and he said, take this, so I'll just take this.
554
00:42:51,441 --> 00:42:56,981
highlight & episode:
So there's difference in thinking right throughout the different sort of ages.
555
00:42:57,301 --> 00:43:02,921
highlight & episode:
And, you know, for a child, you know, not recognising that dying means or dead means forever.
556
00:43:04,001 --> 00:43:10,081
highlight & episode:
So I think there's that, that, a lot of difference around depending on generationally
557
00:43:10,081 --> 00:43:12,281
highlight & episode:
where they're at in their own ages and stages.
558
00:43:12,461 --> 00:43:16,481
highlight & episode:
And for older people who, you know, I was working with someone fairly recently
559
00:43:16,481 --> 00:43:21,001
highlight & episode:
and, you know, they said, look, I've been ready to die for the last 20 years.
560
00:43:21,441 --> 00:43:24,461
highlight & episode:
This is not new and I'm all set to go.
561
00:43:24,641 --> 00:43:29,861
highlight & episode:
So there's that and age very much determines age.
562
00:43:32,047 --> 00:43:35,967
highlight & episode:
The thing about a young person dying is that's not supposed to happen.
563
00:43:36,247 --> 00:43:40,867
highlight & episode:
That's not how life works. Whereas an older person dying, it's that leaning
564
00:43:40,867 --> 00:43:44,827
highlight & episode:
more into, and you hear it publicly all the time, you know, they've had a good life.
565
00:43:45,007 --> 00:43:49,367
highlight & episode:
So, those things, I think what's consistent across them all,
566
00:43:49,567 --> 00:43:55,367
highlight & episode:
but it just shows itself in different ways, is how do I make sense of what's happening?
567
00:43:55,947 --> 00:44:01,047
highlight & episode:
How do I do the best job that I can with what I have?
568
00:44:01,467 --> 00:44:06,127
highlight & episode:
And the recognising of sort of this one chance to get it right.
569
00:44:06,367 --> 00:44:11,407
highlight & episode:
I think they're consistent across in terms of caring and dying.
570
00:44:11,667 --> 00:44:16,167
highlight & episode:
The views of death, the understanding of death, all of that's different all the way through.
571
00:44:16,447 --> 00:44:20,987
highlight & episode:
The meaning that people find in it, looking for meaning is probably consistent.
572
00:44:21,667 --> 00:44:26,987
highlight & episode:
What meaning they find in that is different generationally as well, I think.
573
00:44:28,247 --> 00:44:33,827
highlight & episode:
And when you're outside or one of those out of circles of support,
574
00:44:34,907 --> 00:44:39,867
highlight & episode:
you know, what do you suggest would be the way in which you can assist some,
575
00:44:40,047 --> 00:44:42,887
highlight & episode:
you know, supporting either the carer or the family?
576
00:44:43,167 --> 00:44:48,867
highlight & episode:
You know, what are some things that we should say, shouldn't say, given your experience?
577
00:44:49,147 --> 00:44:54,587
highlight & episode:
I mean, there's a lot of really good books. around what words do I use or something like that.
578
00:44:56,207 --> 00:44:59,867
highlight & episode:
Fundamentally, I think the real thing is about being authentic,
579
00:45:00,107 --> 00:45:01,607
highlight & episode:
being present and being honest.
580
00:45:02,007 --> 00:45:04,887
highlight & episode:
And that could be saying, I don't know what to say.
581
00:45:05,507 --> 00:45:10,227
highlight & episode:
That's okay. I think so in terms of the words that you use is being,
582
00:45:10,547 --> 00:45:14,527
highlight & episode:
I mean, the last thing people want to hear is cliches. That is not helpful.
583
00:45:15,318 --> 00:45:20,138
highlight & episode:
And being really conscious of yourself, am I anxious here and I'm going to say
584
00:45:20,138 --> 00:45:24,918
highlight & episode:
something just to help myself feel better? Or am I really in tune with myself
585
00:45:24,918 --> 00:45:26,298
highlight & episode:
and being honest with the person?
586
00:45:26,498 --> 00:45:31,938
highlight & episode:
And so I think that's really important from an artist is recognising it,
587
00:45:32,078 --> 00:45:34,758
highlight & episode:
acknowledging it and taking the person's lead.
588
00:45:35,598 --> 00:45:43,538
highlight & episode:
They'll, yeah, they'll lead, but they'll lead and respond to your openness and,
589
00:45:43,558 --> 00:45:45,538
highlight & episode:
you know, what's important for them.
590
00:45:45,738 --> 00:45:51,498
highlight & episode:
I think offering support and help is an interesting one because support and
591
00:45:51,498 --> 00:45:55,218
highlight & episode:
help is incredibly important, but sometimes people don't even know what they
592
00:45:55,218 --> 00:45:57,378
highlight & episode:
need because they haven't died before.
593
00:45:57,678 --> 00:46:01,238
highlight & episode:
And the same with Kira, sometimes I don't know what I need because I haven't
594
00:46:01,238 --> 00:46:04,958
highlight & episode:
done this before and not even sure how to put words to it.
595
00:46:05,098 --> 00:46:10,438
highlight & episode:
So sometimes it can be about being proactive without being intrusive.
596
00:46:10,598 --> 00:46:14,438
highlight & episode:
So it could be dropping a meal off, but just dropping it off at the front door
597
00:46:14,438 --> 00:46:20,998
highlight & episode:
and going, not expecting to come in, have a cup of tea, you know, take up more time.
598
00:46:21,098 --> 00:46:24,658
highlight & episode:
And what's natural for you? What's your natural caring style?
599
00:46:25,078 --> 00:46:28,958
highlight & episode:
So I think all of those are important. It's about being open.
600
00:46:29,158 --> 00:46:33,598
highlight & episode:
It's about listening, not using cliches, being aware of your own sort of like,
601
00:46:33,718 --> 00:46:34,938
highlight & episode:
oh, I don't know what to say.
602
00:46:35,858 --> 00:46:42,658
highlight & episode:
And I think that's fine to say though, isn't it? You know, I don't know what to say. It's...
603
00:46:43,159 --> 00:46:49,579
highlight & episode:
Because I think for the default position, that's when the cliches come out, isn't it, very quickly?
604
00:46:49,819 --> 00:46:52,419
highlight & episode:
I think even if you don't say, I don't know what to say out loud,
605
00:46:52,559 --> 00:46:55,859
highlight & episode:
I'll say it to yourself and you recognise, yeah, I actually don't know what to say.
606
00:46:56,539 --> 00:47:01,539
highlight & episode:
But more than anything, I want you to know that I do whatever it is to support you.
607
00:47:01,559 --> 00:47:04,619
highlight & episode:
And I really feel for you right now. I'm so sorry.
608
00:47:05,019 --> 00:47:08,439
highlight & episode:
It is that really genuine, you know, what are you?
609
00:47:08,659 --> 00:47:12,899
highlight & episode:
What is happening for you? and they're going to appreciate the honesty more
610
00:47:12,899 --> 00:47:20,099
highlight & episode:
than cliches or sometimes people also just don't want it like it could be, yep, thanks.
611
00:47:22,039 --> 00:47:28,299
highlight & episode:
I don't want to talk about it or, you know, that it is, you know,
612
00:47:28,559 --> 00:47:33,799
highlight & episode:
you know the person, what's their personality like, what's trying to guess what
613
00:47:33,799 --> 00:47:36,879
highlight & episode:
would be helpful and asking them if it is helpful.
614
00:47:36,879 --> 00:47:40,299
highlight & episode:
Would it be helpful if I as opposed
615
00:47:40,299 --> 00:47:43,359
highlight & episode:
to a more open-ended I'm
616
00:47:43,359 --> 00:47:47,579
highlight & episode:
here for support just call me they're not going to initiate necessarily um
617
00:47:47,579 --> 00:47:50,759
highlight & episode:
yeah I heard someone mentioning
618
00:47:50,759 --> 00:47:53,759
highlight & episode:
you know offer to help but only
619
00:47:53,759 --> 00:47:56,939
highlight & episode:
what you're going to follow through with so and being
620
00:47:56,939 --> 00:47:59,859
highlight & episode:
specific so it's sort of like I'm going to the
621
00:47:59,859 --> 00:48:03,079
highlight & episode:
supermarket do you need anything from the
622
00:48:03,079 --> 00:48:07,359
highlight & episode:
supermarket yeah let me know in the next half hour so
623
00:48:07,359 --> 00:48:11,159
highlight & episode:
therefore it's very clear yeah yep and absolutely
624
00:48:11,159 --> 00:48:15,579
highlight & episode:
i would agree with that wholeheartedly um uh
625
00:48:15,579 --> 00:48:20,559
highlight & episode:
and then they think practically well i need this that and the other thing and
626
00:48:20,559 --> 00:48:24,539
highlight & episode:
they're going anyway so it's not an inconvenience um and it's pretty straightforward
627
00:48:24,539 --> 00:48:28,919
highlight & episode:
because you know when you're under that sort of pressure you might not even
628
00:48:28,919 --> 00:48:31,559
highlight & episode:
realize that you don't have things in your cupboard and suddenly it's like,
629
00:48:31,679 --> 00:48:33,499
highlight & episode:
oh, yes, they're going, what do I need?
630
00:48:35,179 --> 00:48:43,339
highlight & episode:
And tell me, 25 years, there's obviously been things that certainly keep you
631
00:48:43,339 --> 00:48:45,339
highlight & episode:
in the space. You've mentioned a few of them.
632
00:48:45,619 --> 00:48:49,899
highlight & episode:
But what do you find the most rewarding aspect of the work that you do, Inga?
633
00:48:53,999 --> 00:49:02,359
highlight & episode:
I think in leadership and clinical supervision as well as seeing clients, I think for me.
634
00:49:03,651 --> 00:49:06,451
highlight & episode:
Measuring was this useful or is
635
00:49:06,451 --> 00:49:09,531
highlight & episode:
this successful or whatever and in palliative care
636
00:49:09,531 --> 00:49:12,311
highlight & episode:
there's often a lot of feedback around the service
637
00:49:12,311 --> 00:49:16,151
highlight & episode:
is fantastic you guys are incredible all of
638
00:49:16,151 --> 00:49:18,771
highlight & episode:
those sorts of really strong statements and that's sort
639
00:49:18,771 --> 00:49:21,651
highlight & episode:
of your angels the interesting thing for
640
00:49:21,651 --> 00:49:24,951
highlight & episode:
me I get such a warm feeling of success
641
00:49:24,951 --> 00:49:28,091
highlight & episode:
or this is we're on the right track when
642
00:49:28,091 --> 00:49:31,591
highlight & episode:
I hear families talk about or I hear the person that's
643
00:49:31,591 --> 00:49:34,631
highlight & episode:
ill talk about we did this or I've
644
00:49:34,631 --> 00:49:38,151
highlight & episode:
done that or I've had this discussion or I've met
645
00:49:38,151 --> 00:49:45,811
highlight & episode:
this challenge or this is them themselves and I think you know I measure the
646
00:49:45,811 --> 00:49:51,491
highlight & episode:
success I think of what I'm doing is when I become wallpaper so they don't see
647
00:49:51,491 --> 00:49:56,091
highlight & episode:
me I don't want someone to remember in five years time or 10 years time,
648
00:49:56,271 --> 00:50:00,391
highlight & episode:
oh, remember Inga, she was the worker, da-da-da-da. I know I've succeeded.
649
00:50:00,831 --> 00:50:05,231
highlight & episode:
It's when they, oh, remember when he did this and he did that.
650
00:50:05,371 --> 00:50:07,731
highlight & episode:
And remember we were able to do this.
651
00:50:07,911 --> 00:50:13,271
highlight & episode:
And so there's a sense of pride, achievement, strong remembering.
652
00:50:14,051 --> 00:50:21,091
highlight & episode:
There's been a discovery of their own growth, be it the client or the family.
653
00:50:21,551 --> 00:50:26,871
highlight & episode:
That's when I feel like I've succeeded. So it's not about being told by clients that it's a great job.
654
00:50:26,991 --> 00:50:30,571
highlight & episode:
It's when I'm wallpaper and they are proud of their great job.
655
00:50:30,971 --> 00:50:34,791
highlight & episode:
That's what means so much to me in the work. That's when it feels like,
656
00:50:34,871 --> 00:50:38,471
highlight & episode:
yeah, we've got this. We're doing it right because they can't even see us.
657
00:50:38,631 --> 00:50:40,871
highlight & episode:
They don't know where we're doing this in the background.
658
00:50:42,211 --> 00:50:46,431
highlight & episode:
What sort of wallpaper would you like to be? Very good question.
659
00:50:46,431 --> 00:50:51,511
highlight & episode:
I was visualising something soft and neutral. Yeah.
660
00:50:52,325 --> 00:50:57,445
highlight & episode:
I kind of, I don't know, I think like, for me, I think it's got like a blue,
661
00:50:57,945 --> 00:51:01,745
highlight & episode:
you know, those gorgeous old velvet ones. Oh, yes.
662
00:51:02,025 --> 00:51:08,525
highlight & episode:
Yeah, like a nice blue velvet with a nice maybe fleur-de-lis on there, I think might fit you in.
663
00:51:08,985 --> 00:51:14,525
highlight & episode:
You know, just subtle, but you know, that would be quite, you know, quite lovely.
664
00:51:14,525 --> 00:51:20,625
highlight & episode:
Now tell me, the government's just actually announced some significant funding
665
00:51:20,625 --> 00:51:24,785
highlight & episode:
in relation to home care and end of life,
666
00:51:25,545 --> 00:51:30,405
highlight & episode:
So where do you see with that sort of injection of funding or at least that
667
00:51:30,405 --> 00:51:36,005
highlight & episode:
acknowledgement that there's need in this space And we all would be aware that
668
00:51:36,005 --> 00:51:41,365
highlight & episode:
we're an ageing population and going to almost double those figures above 65
669
00:51:41,365 --> 00:51:43,745
highlight & episode:
I think in the next 10 or 15 years,
670
00:51:44,565 --> 00:51:49,545
highlight & episode:
So what do you see as the changing of, you know,
671
00:51:50,165 --> 00:51:54,885
highlight & episode:
home hospice, palliative care services in the home, those sort of offerings?
672
00:51:55,085 --> 00:51:59,465
highlight & episode:
And the demand for palliative care, that's only going to increase phenomenally.
673
00:52:00,445 --> 00:52:07,145
highlight & episode:
One of the biggest things in terms of staying at home and dying at home.
674
00:52:08,123 --> 00:52:13,043
highlight & episode:
Is what it means in terms of the physical demand on carers or the person that's
675
00:52:13,043 --> 00:52:16,863
highlight & episode:
dying and everything that needs to happen. And it's all the practical stuff too.
676
00:52:17,043 --> 00:52:20,363
highlight & episode:
I mean, it's mowing the lawns, it's, you know, cleaning the floors,
677
00:52:20,423 --> 00:52:21,483
highlight & episode:
it's getting the shopping done.
678
00:52:22,443 --> 00:52:27,283
highlight & episode:
And I'm assuming that the funds you're talking about is the fast track of My
679
00:52:27,283 --> 00:52:35,763
highlight & episode:
Aged Care funding. I think it's up to $25,000 for anyone three months who's
680
00:52:35,763 --> 00:52:37,423
highlight & episode:
going to die within the next three months.
681
00:52:38,123 --> 00:52:44,903
highlight & episode:
And that is above what they're already getting, be it if they're on an aged care package.
682
00:52:45,043 --> 00:52:49,603
highlight & episode:
I think that's going to be absolutely crucial. I think everything from getting
683
00:52:49,603 --> 00:52:51,763
highlight & episode:
the hospital beds, paying for the medication.
684
00:52:52,583 --> 00:52:57,083
highlight & episode:
Getting other sorts of services that would keep at home, be it,
685
00:52:57,103 --> 00:53:01,883
highlight & episode:
you know, meals and the hygiene support.
686
00:53:01,983 --> 00:53:06,483
highlight & episode:
You know, if you're not able to shower yourself every day, if you and the fast
687
00:53:06,483 --> 00:53:10,723
highlight & episode:
tracking. So often we'll have clients and they are referred and they will die
688
00:53:10,723 --> 00:53:16,043
highlight & episode:
within the next three months and we'll find out that they have no services involved.
689
00:53:16,183 --> 00:53:17,903
highlight & episode:
Then we'll do all the referrals.
690
00:53:18,123 --> 00:53:23,303
highlight & episode:
And by the time they get assessed, which may take weeks and months,
691
00:53:23,843 --> 00:53:28,543
highlight & episode:
then that they're approved for a package of some sort for these supports,
692
00:53:28,543 --> 00:53:31,083
highlight & episode:
that can take time again.
693
00:53:31,183 --> 00:53:33,823
highlight & episode:
And then it's getting the services in.
694
00:53:33,983 --> 00:53:36,303
highlight & episode:
So the whole thing could be six to 12 months.
695
00:53:36,883 --> 00:53:42,483
highlight & episode:
And often our clients don't have that time. So the fast tracking to support
696
00:53:42,483 --> 00:53:45,383
highlight & episode:
quality of life at home, I think, is absolutely crucial.
697
00:53:45,983 --> 00:53:52,363
highlight & episode:
Absolutely crucial. And look, it's a wise move because if home is not an option,
698
00:53:52,363 --> 00:53:54,903
highlight & episode:
it's a residential aged care facility or hospital.
699
00:53:55,983 --> 00:54:00,123
highlight & episode:
And, you know, those again are from if we're looking at palliative care from
700
00:54:00,123 --> 00:54:02,683
highlight & episode:
a fiscal point of view, they're expensive options.
701
00:54:02,683 --> 00:54:10,583
highlight & episode:
But I think what is delightful about this is that we see all the unmet needs
702
00:54:10,583 --> 00:54:13,743
highlight & episode:
and we can only meet the specialist palliative care needs.
703
00:54:13,943 --> 00:54:18,503
highlight & episode:
And to know that there's something else in that space that's going to support
704
00:54:18,503 --> 00:54:20,523
highlight & episode:
that, I'm just absolutely relieved.
705
00:54:20,823 --> 00:54:28,063
highlight & episode:
Absolutely relieved, even though recognising it's not going to come into place until July 25, 2025.
706
00:54:28,743 --> 00:54:32,243
highlight & episode:
Yeah. But it's well needed.
707
00:54:33,283 --> 00:54:38,343
highlight & episode:
And Inge, just to the point that you were talking about then, so if someone,
708
00:54:39,468 --> 00:54:45,028
highlight & episode:
could take up to 12, 18 months to be assessed and then have services offered
709
00:54:45,028 --> 00:54:48,208
highlight & episode:
to them through the My Care Aged Package?
710
00:54:50,968 --> 00:54:54,668
highlight & episode:
My Aged Care. Thank you, My Aged Care Package.
711
00:54:55,348 --> 00:55:01,988
highlight & episode:
Therefore, should we be encouraging people to try and get that assessment earlier? Absolutely.
712
00:55:03,028 --> 00:55:07,208
highlight & episode:
Even before they really need it, so their house is actually even assessed so
713
00:55:07,208 --> 00:55:09,548
highlight & episode:
what they may need at some stage?
714
00:55:10,288 --> 00:55:15,188
highlight & episode:
What happens is they're only assessed for what's actually happening at that moment.
715
00:55:15,348 --> 00:55:19,888
highlight & episode:
Okay. So they often will need to be reassessed if they're deteriorating.
716
00:55:20,068 --> 00:55:23,368
highlight & episode:
But I think the other thing around that and one of the other challenges,
717
00:55:23,368 --> 00:55:27,368
highlight & episode:
I think you asked me the question around the challenges, is quite a complex system.
718
00:55:27,748 --> 00:55:32,328
highlight & episode:
I find it really complex in terms of, you know, this service does this assessment,
719
00:55:32,468 --> 00:55:35,788
highlight & episode:
this service does that, you get a code for this and you get a code for that.
720
00:55:35,928 --> 00:55:40,328
highlight & episode:
And then that service picked up that code and then all of them need to do assessments
721
00:55:40,328 --> 00:55:46,608
highlight & episode:
and professionals find it difficult to understand, let alone someone who is
722
00:55:46,608 --> 00:55:49,268
highlight & episode:
unwell, maybe not IT savvy,
723
00:55:49,808 --> 00:55:53,148
highlight & episode:
has had so many calls for so many assessments.
724
00:55:53,528 --> 00:55:57,588
highlight & episode:
And some of our clients, they'll get a call saying, yep, we're ready for an
725
00:55:57,588 --> 00:56:00,128
highlight & episode:
assessment. And it's sort of like, I don't even know who you are.
726
00:56:00,248 --> 00:56:01,568
highlight & episode:
And they'll just hang up on them.
727
00:56:01,708 --> 00:56:06,248
highlight & episode:
So they've missed that chance and we'd have to call again and try and arrange it all.
728
00:56:07,228 --> 00:56:08,628
highlight & episode:
So getting it...
729
00:56:09,207 --> 00:56:13,867
highlight & episode:
I mean, knowing it's available, understanding it, getting yourself assessed
730
00:56:13,867 --> 00:56:18,707
highlight & episode:
for supports is wise if you're needing supports at home.
731
00:56:18,827 --> 00:56:22,807
highlight & episode:
But I don't know necessarily if getting it done earlier, inverted commas,
732
00:56:23,247 --> 00:56:26,107
highlight & episode:
is because you'll only be assessed for what you need at that time.
733
00:56:26,107 --> 00:56:28,207
highlight & episode:
If you need to change, you'll need another assessment.
734
00:56:29,907 --> 00:56:33,527
highlight & episode:
Wow. I couldn't even get the correct name of the package right.
735
00:56:33,527 --> 00:56:36,467
highlight & episode:
So it is very challenging for me to navigate.
736
00:56:36,747 --> 00:56:40,927
highlight & episode:
Yeah, I think it's, yeah. Yeah. Like I said, it's navigating for professionals,
737
00:56:41,007 --> 00:56:46,087
highlight & episode:
let alone clients and families and when you're unwell and under stress.
738
00:56:48,527 --> 00:56:52,807
highlight & episode:
Do you have any other thoughts that you'd like to share or advice with a singer?
739
00:56:54,067 --> 00:56:58,427
highlight & episode:
Look, I think the thing is that we are all going to die.
740
00:56:58,427 --> 00:57:01,447
highlight & episode:
Dying is a natural part of
741
00:57:01,447 --> 00:57:04,987
highlight & episode:
life and yet how can we
742
00:57:04,987 --> 00:57:08,047
highlight & episode:
as a community both a professional
743
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community as well as a social community do
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that well I think anything that moves us in that
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direction that human side of people and
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the compassionate side of people I think anything
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that's going to support that and bring that out I think wow go
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for it so I really do appreciate your work I think information is
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such a huge part of that education and information
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is so important because people haven't
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died before they don't know how to do this yeah you don't get a rule before
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so thank you for your work Catherine I think it's really important yeah thanks
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Inga thank you so much for being on the show it's been my pleasure we.
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outro:
Hope you enjoyed today's episode of don't be caught dead brought to you by Critical Info.
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outro:
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heard, we'd love for you to let us know.
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Send us an email, even tell your friends.
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outro:
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outro:
up to our newsletter and follow us on social media. Head to don'tbecaughtdead.com
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outro:
for more information and loads of resources.
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Resources
- Visit the Website: Peninsula Home Hospice
- Visit the Website: Palliative Care Australia
- Visit the Website: Compassionate Communities
- Visit the Website: CareSearch
- Download the App: Dr Andrea Grindrod’s HELP App
- My Loved One Has Died, What Do I Do Now?
Our guide, ‘My Loved One Has Died, What Do I Do Now?’ provides practical steps for the hours and days after a loved one's death. Download it here.
- Support Services
If you're feeling overwhelmed by grief, find support through our resources and bereavement services here.
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