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Episode 1
21 Plays1 year ago
We open the series with a moving conversation with Suzy Tay, who is caring for her father. Suzy talks about the ordinary and extraordinary nature of her role as daughter, sister and caregiver.
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Transcript
Introduction to 'Conversations That Count'
00:00:01
Speaker
I'm Melissa Reeder, welcome to Conversations That Count. These are candid conversations with people about the highlights and the lowlights of caring for loved ones through the last stage of life.
Challenges of End-of-Life Discussions
00:00:14
Speaker
83% of people who are currently caring for an elderly, frail loved one or someone with a terminal illness find it challenging to talk about plan for and manage this life stage and access the services they need. It's a really high number and it needs to be addressed. We need to find new and novel ways to help people with this life stage so that it can be the best it can be for everyone involved.
Personal Stories Over Statistics
00:00:41
Speaker
But my focus here is on the stories, not the numbers.
00:00:47
Speaker
Hi, welcome to Conversations That Count. I'm Melissa Riga. I'm the CEO of Violet. I'm calling today from the Gondangarra Lands of the Eora Nation and I want to honour the traditional owners of the land and their enduring connection to it.
Welcome Susie and Her Background
00:01:02
Speaker
So I'm talking today to Susie. Hi Susie. Thanks for tuning in. My pleasure. very you Where are you calling from today? I'm from the Gadigal Lands.
00:01:13
Speaker
And they're probably a little bit soggy as ah as we are down here after the weather of the last couple of weeks, hey? We absolutely are. It's been raining for about um at least 10 days, but at least the sun's come out now, which is lovely. Yeah, we can dry out a little bit. Susie, we wanted to have a little chat today about your dad. Do you want to tell us a little bit about your dad, his name, his age, and um you know what's been happening? Absolutely. Dad's actually very interesting. He's a Chinese background, so his actual birth name is Kekwa Tei. Wa meaning sunshine. ah But when he came over here, ah he was only 18 and he adopted the name of Richard. So he goes by the name of Richard Tay or Richard Kett Watay. He came over from Sabah as an 18-year-old hoping to study and he did in fact study. um He didn't end up finishing his study but he of course met Mum and and they had my sister and myself and they lived
00:02:18
Speaker
or we lived all around the place but predominantly I guess they've landed in Newcastle and and that's where Dad is now.
Susie's Dad's Health Journey
00:02:24
Speaker
Dad's now 86 and he's in the nurse at one of the Calvary nursing homes and is he was doing, physically he's been very very well up until 2021 when um after Mum passed he got cellulitis in his legs and was hospitalised for for four days and um it really triggered Alzheimer's, which we know that he was actually in that, ah he was experiencing that, but he certainly had been living independently, um but after that his decline has just been, ah you know,
00:03:05
Speaker
sort of fairly, fairly rapid until now where we's really actually now in end stage care, unfortunately. So that's that's the short version of it. um Yeah. Pretty amazing family history and heritage there that you've talked about. Absolutely. he yeah you know particularly Particularly when I think about it in the context of the australian um you know the development of Australia and and the issues about having mixed-race families, mixed-race marriages. um yeah dad was a brave Mum and Dad were brave dudes.
00:03:44
Speaker
You know, like right the great family history and story. Absolutely, And I guess, you know, keeping all that in mind and thinking about your dad at 86 in residential care, what are some of the things that are most important to him right now?
Impact of Loneliness and Family Efforts
00:04:01
Speaker
Look, i could I really need to so to speak about it in the last probably three years. One of the things that has always been in my mind about dad and also something that we talked about at length was his loneliness um after mum passed in 2017.
00:04:17
Speaker
you know, a dad had always lived in a relationship with mum and had always had her companionship. And one of the most important things to dad, one of the things that sort of, I guess, playing to him the most was loneliness. And so where he was living, as we moved in, my sister and I and my brother-in-law moved dad from various residential places from his original home where he and Mum were when Mum passed. We always wanted to make sure that he had ah people around him. um He had a little dog until he could no longer look after the little dog. And one of the things I think that was most important was having people around
00:04:56
Speaker
ah caring staff that that he could just be with. I mean dad actually would I laugh a little bit to myself because dad always go you know I'm so lonely and I was like dad you're sitting with other people you know he actually could sit with other people and be happy with that but he the sense of being isolated and not having somebody with him was you know that's the quickest way to an ah an early death so I would say that was probably the most important thing more so than food or all the surroundings or anything else yeah That kind of companionship. Absolutely. yeah Yeah.
Emotional Toll on Susie's Family
00:05:30
Speaker
And as you've gone through those last couple of years, Susie, with your dad and with your family, what have been some of the most difficult parts for you, I guess, for you and your family and navigating your dad's care and and maybe some of the most difficult parts for him?
00:05:53
Speaker
So I think the most difficult thing is my sister has actually been ah up in Newcastle the whole time and she shouldered the responsibility on a day-to-day basis and I mean she's an amazing person and she's got such a wealth of knowledge ah and experience herself being able you know coming from the caring profession So that's been I've been extraordinarily lucky that way and of course I live further away and you know the ability to be present and you know attend ah both for far for my father but also for the wider family has been the most challenging thing I think. ah I think also just watching Dad in his decline I'll just excuse me a minute I'll just get a tissue.
00:06:43
Speaker
ah did yeah course
00:06:49
Speaker
oh
00:06:57
Speaker
Yeah, I think, um you know, with family, I think any, you know, any family that's had somebody with Alzheimer's, you know, I read about it, it was saying, you know, it's such a long goodbye, and it really is a such a long goodbye. And, you know, I've hooked up and see data, you know, as regularly as I possibly can. ah But even seeing that decline, I think the decline is more obvious to somebody who isn't there, you know, on ah on a daily basis and that's a very difficult thing to come to terms with and also manage your life.
00:07:33
Speaker
In the meantime, while you're still living very much, um yeah somebody who's so central who's been so central in your life is dying, plus your family members around you who are also managing their own life and their own families and the own you know their own the own ups and downs that happen with everyday life. um So it's probably pretty ordinary what I'm talking about, but emotionally it can be very very challenging and yeah I just have a greater appreciation. Mum died very suddenly and that had its own issues with the shock of it and dad however has been as I say the long goodbye.
Violet's Support and Counseling
00:08:16
Speaker
ah You know, you talk there about the ordinariness of it, but actually that's so important, isn't it? in Totally, totally. And I have to say, and I know it may not, it take ways though, is is it one of the services that my sister told me about was your organisation was Violet and um she said to me, look, they offer this ah telephone service for counselling and um offered it to her her boys. She's got two lovely boys and offered it to me and said, would I be interested? And I said, look, absolutely. I mean,
00:08:51
Speaker
It was then was the opportunity to just have somebody to have a conversation with them. And, um you know, eight it's such an ordinary space that I mean, and such an extraordinary space that I mean, that I felt that having somebody that I could talk to that knew the actual issues that might be happening for me right this very moment amongst a normal life. Yeah, that that really, that and as I say, it just segued into it that the opportunity to just be able to say, oh my God, I'm feeling like this and I know it's meant to be ordinary. I know that in the next 15 minutes, I've got to go off and have a meeting or I've got to go off and do this or I've got to to be my ordinary self. But behind me is what is you know this burden the burden and it is a burden of waiting for Dad
00:09:36
Speaker
each time he progresses further down the track being able to manage just the the sadness.
Managing End-of-Life Care in Dispersed Families
00:09:45
Speaker
Yeah I think it's one of the very real and probably very silent parts of your the sandwich generation. you know It's um so many people out there trying to manage exactly what you've just described. And you know we don't have we don't have a mentorship for it you know in the in the grand scheme of how life is in our community. I don't feel, I feel, you know, we do it, some families do it better than others, um but we don't necessarily have that, ah the we don't have the mental, we don't have a structure around our life that is, you know, all the families living together in the house. So when you're small, you see your grandparents die or they live next door or they live in the next suburb. I mean, we are so disparate now that ah we learn on the run how to manage, you know, end of life.
00:10:42
Speaker
That's certainly my experience. yeah Yeah.
Evolving Support Systems
00:10:45
Speaker
I think that's really true. and And I think a lot of people would turn to their doctor, you know, for that support or for some of that sense making or may perhaps turn to their priest. But, you know, all the statistics tell us that our relationship with religion is looking very different over time. And there's just a whole lot of people left in in that space that you're describing. Yeah. Yeah. Yeah. Yeah. Thanks for sharing that so honestly with us, Susie.
00:11:17
Speaker
um What about some of the more unexpected highlights?
Humorous and Touching Moments with Dad
00:11:23
Speaker
What have been the bits that might have surprised you in a happy ways. is there Are there things that you could reflect on? Totally, I mean one of the funniest things that my father at the moment, dad's you know as I said he's in end care and in fact today they've just called in the priest um to seem it in a couple of hours and you know you never know at what point somebody is going to pass but certainly along the journey I mean I have to say there was a this is a terrible story actually but the last time I was up spending an extended period of time with my father when my sister was actually away
00:11:59
Speaker
um Dad actually suffered a stroke and it happened right in front of me. um And the nursing staff were amazing. They were totally amazing. But when we finally got him back into you know a space where just before the ah ambulances came, yeah Dad suddenly became extraordinarily lucid. And he has not been lucid for several years. And we had a really lovely conversation.
00:12:28
Speaker
The other funny thing is that actually Tracy, my sister, Tracy's got this fabulous set of teeth. Anyway, every time that sees her, he says, gosh, you've got beautiful teeth. And then the conversation, I don't know where else. other than the But he's always so happy to see her. And he always comments on what beautiful teeth. And Tracy and I, of course, laugh quite next to you, Tracy. How's dad? And I said, my teeth are good. Your teeth are looking good. You've got to laugh at at those moments. And also, as I said, those moments where dad actually is lucid. And then he has this beautiful, dad actually dad has this beautiful capacity
00:13:15
Speaker
for but authenticity and honesty and and touching upon his own feelings, you know, and it doesn't come out often, but when it does, it's a total, it's just, it's a really, it's a privilege to experience it. So yeah, I've had those moments too. Aren't they pretty precious? Memories and moments too, as you're going through all this.
Being Present and Creating Memories
00:13:41
Speaker
Hardly. You know, but one of the things I said, yeah you really, you know, I said to myself, you must be present to this. As difficult as it is, you must be present. And I think that's the challenge is being able to turn up.
00:13:53
Speaker
you know, and keep keep turning up. Because it's it's actually at the end of the day, it's actually not just for Dad, it's actually all for me. So that I do have these memories, I do have, you know, these things ah look back on and go, I live that part of life with Dad as best I could. And these are the lovely memories that I have. Yeah.
00:14:17
Speaker
Well, you might have just in a way answered the next question I was going to ask you that I'll ask you anyway, in case there's other things.
Advice for Those on Similar Journeys
00:14:25
Speaker
Do you have any advice? You know, you think about the number of people that are going through this right across the country today, um or maybe the people that aren't going thick through this right now, but they know it's ahead. Maybe they're back where you and your sister were two or three years ago. What what would you say to those people? um you know, in terms of things they might want to think about or prepare for over the years that are ahead. I really, you know, it's also it's also personal. I guess that's the thing I would say to everybody. You know, it's it's so personal and my heart goes out to you when you if you are yet to go through it. um
00:15:11
Speaker
It's a really, let's be really kind to yourself and also be kind to the people who are around because um everybody, despite what we might think, everybody's going through the same thing and you know just think twice before you, if you can take a second before you react. that will help. But other than that, I have nothing really. it's As I said, I'm just ordinary and everybody's doing ordinary acts that hopefully get us through.
00:15:44
Speaker
and Yeah and I think your comments on just being present are um are really important too and and maybe they're actually pretty connected, you know being present and just taking that moment of pause because there's so much going on isn't there in people's lives and emotions when this is all happening and and even for the health and aged care staff you know. this and That's right.
Importance of Open Conversations
00:16:07
Speaker
and That's absolutely right and you know and I think also it's okay that if you if you feel you can't turn up because it's just too much I think that's perfectly fine too and so I guess when I say being present I'm saying being present to myself as well as being present to those that are around it is okay not to turn up.
00:16:28
Speaker
To take that moment for you if that's what you need. Absolutely.
00:16:34
Speaker
So you see, I really, really, really love chatting with you. Thank you for taking a few minutes to talk about what's happening for you and your sister and your dad. We'll be thinking of you over the next couple of days, couple of weeks. Sounds like, um you know, your dad is at the very end of his life. So we're sending all of our love and strength your way. Thank you. And thank you for opening up these conversations, which, you know, if we had more of them,
00:17:05
Speaker
Yeah, thank you. That's the work, right? Absolutely. Thanks, Susie. Bye bye.