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00:00:01
Episode 4
33 Plays1 year ago
Anthony talks about the journey of caring for his sister, Trish. It’s a story that spans decades of love, resilience, and navigating a world that has evolved in its understanding of disabilities.
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Transcript
Introduction & Eagerness
00:00:00
Speaker
Hey Anthony, thanks for having a chat this morning. I'm really looking forward to it. Yeah, fantastic. What you've shared of your story so far is really very heartfelt and it's very intriguing and and I'm, I'm looking forward to learning more as well. Do you want to start just by telling us a little bit about your sister and maybe a bit, bit of the family story?
Anthony's Family & Trish's Birth
00:00:23
Speaker
Sure. My family story, my family emigrated under a little bit of duress in the mid 1950s and came to Australia. My parents had been neighbors in the their country of origin. Not long after romance blossomed, they got married and started a family. The first child they had was my sister Trish in the late 1950s. Trish was born with a whole bunch of
00:00:45
Speaker
complications and issues, health issues. She was quite significantly intellectually disabled, although that really wasn't recognized until she was a little bit older. She had a cleft palate. She has spina bifida. And in the late fifties and early sixties as she was going through the early part of her childhood, things were very different.
Living Arrangements & Family Dynamics
00:01:04
Speaker
Um, healthcare was different. Our community and social attitudes to people with significant disabilities were very, very different. Until my sister was six, she actually lived at home with my parents. By that stage, she was nonverbal and she still, she remains nonverbal now, even though she's in her mid sixties. At the time she took her until she was about five or six years old until she was able to walk independently. So a lot of things that we take for granted through childhood just happened really, really slowly or just did not happen for Trish. So in the early 1960s, she entered full-time residential care, which
00:01:43
Speaker
was a great thing for our family, I guess, in one sense, because it took a whole bunch of the heat off my parents. about the kids by then we So my other sister was born 13 months later. They would have had six children and not four if Trish had been healthy because they would have just kept having kids. but they actually took up an eight year break between my sister and I. So there's we're kind of like in two little groups, is my sister my two sisters, and then there's me and my brother. um ah But one of the really interesting things and I've been thinking, reflecting on this a little bit, is that even though our sister lived away from home, she was kind of almost the glue that kept our family together in some ways.
00:02:21
Speaker
So it was really interesting. My father was absolutely devoted to making sure that our family stuck together all the way through that. And my mother as well, I remember with my dad more because he was the driver. So we used to drive every Saturday to pick up my sister, Trish, and she would come home. and have lunch and dinner and then be driven back to the plate back back to her residence each weekend. So we would see her every weekend. My father in his work career was pretty successful.
Father's Sacrifices & Societal Attitudes
00:02:49
Speaker
So even though he was an immigrant, he ultimately ended up with an Australian diplomatic passport and represented Australia at UN things and was offered postings overseas and refused all of them, even though they would have been significantly more but better paid and all those sorts of things to because he said, we cannot separate our family.
00:03:08
Speaker
Gosh, so kept everyone together and kept that weekly commitment where he brought your sister. It used to be Saturdays and it was Sundays. but How did you find that? How was she on those trips back to the family home? It was really, really interesting because for us, having a family member with disability was completely normal. So I grew up in the seventies where using slurs that, you know, were around intellectual disability. So, you know, and I say this without trying to offend anyone, but you to say if someone did something silly or something, you'd say, oh, you're so retarded and stuff like that. yeah And it was kind of the terminology of the seventies. It's, you know, there's a lot of things we said in the seventies we now regret. break So it was really interesting that, you know, having grown up with someone like with disability like that, it was like, hang on, actually, that's not really fair to do. So I kind of did.
00:03:58
Speaker
influence the way we relate it to other people and and so on. Of course, when you grow up with that experience, it's just instilling you, right? Yeah, that's right. But I mean, by and large, Trisha has been part of our lives. And I contrast that with some of what went on in the late 50s and early 60s, where there were many residents at this particular facility where my sister lived who were abandoned, who were left there because families were told, you can't actually care for them. You know you don't have what you need to do. it It's too hard. all those sorts of things and we'll look after them. So there were many residents at that place where who never saw family ever again. you know They were left and that was it, that was their life.
Institutional Care Realities
00:04:38
Speaker
Very institutionalized. Institutionalized. They lived in dormitories, shared meals, shared clothing. For a lot of that time, we would give our sister gifts of clothes and things for her birthdays and Christmas, but we'd never see her wearing the clothes we gave her because that everything would go into a pool that got shared. Right. Yeah.
00:04:58
Speaker
Of course, the decisions of other families, because it's very hard to do that, right? You just don't know the circumstances. Oh, look, and then that's right. i'm not happy but I don't want to really bag out anyone in saying that. it's yeah We're all products of the environments and times we grow up in. And that was just kind of how it was in the 50s and 60s. And I dare say some of the people who were in that place were there from the 40s and beyond. you know They weren't all you know eight or 10 year olds. they were Some of them were 30 or 40 years old already. So they'd been there for a very long time. So they didn't have anyone else outside. yeah But yeah, and I guess that was kind of like the early bit.
Transition to Group Home
00:05:34
Speaker
If we kind of jump forward and take a really big jump from childhood until about 20 years ago, that particular facility closed down. So it's in in Melbourne and the Victorian government realised that they were sitting on this very, very um valuable piece of inner city real estate and decided
00:05:52
Speaker
Because of the value of that real estate and also the number of residents by then had started to diminish just because people were dying and by then. We weren't putting people in institutions like that. where People were living out in the community more. The decision was taken for my sister to move into residential care. So she lives now in a house in suburban Melbourne with five other ladies with similar-ish levels of disability. Obviously everyone's different and no two people with disability are identical, but people who needed kind of similar levels of care. And she's lived in that house for about 20 years now.
00:06:26
Speaker
And look, I cannot tell you how amazing that house is. She's had continuity of care. um The house leader, who is just an um absolutely beautiful woman, has been at that house for almost that entire time, has had some of the other staff members. So she's had this continuity of care and and a whole ah family where she lives. Some of the residents have been there just as long as she has. Yeah. and Really amazing. So I love to have Despite all the challenges that my sister now has, particularly around her health, um the care that she's had all the way through, of just but it's just been phenomenal. and look My other sister has been amazing too. She lives not far from where Trish lives.
00:07:09
Speaker
And she's there every week. She's the one that gets most of the phone calls at one o'clock in the morning if something's gone pear-shaped. You know, she's the one that's, you know, we're between the three siblings, my two siblings and I, we're at the hot, you know, if my sister's in hospital, we we try to make sure that she's got someone with her all the way through every waking hour and all that sort of stuff. She is the glue because she keeps bringing us all back together. Tell me, tell me how things
Health Challenges & End-of-Life Discussions
00:07:34
Speaker
are going for Trish. How's her health now at that stage of her life? It's fair to say it's pretty challenging. It was only very recent that the the big challenges really started. It's only been about in the last eight weeks or 10 weeks. Her health has been okay. If you see Trish and she's in the mid sixties, if you looked at it, you would estimate her age to be probably 15 or 20 years or even more older than what she is on the clock. She looks much older than she is. And she's aged quite quickly over the last few years. um She's now wheelchair bound, so she can't walk anymore. She used to be able to walk.
00:08:08
Speaker
Um, then she was walking with a frame and now she's, um, wheelchair. So she basically moves between bed and wheelchair, um, through a day. Um, so that's a challenge obviously for her carers. Um, they've been amazing. They've, you know, at every instance when there's been a new challenge, they've stepped up and said, okay, we can deal with that. And they find a way through it so that she hasn't had to move out of that house into some other um level of care. So there's that side, but I guess about eight weeks ago, she, there was an episode where she vomited overnight and aspirated, which means she actually breathed in her vomit and it landed in her lungs, which is basically pneumonia. So she had aspiration and pneumonia from the vomit. Um, and that happened on a weekend. We got called into the hospital.
00:08:53
Speaker
And it was the Sunday night. It was dark because it's winter in Melbourne. The room was dark and dim because the lights had been turned down a little bit. There'd been intensive care, doctors and nurses in the hospital ward trying to assess what to do. And my sister and I, Carol was standing there and one of the doctors looked at us and just goes, so do you have an end of life plan? End of life plan. It was just like, we were totally blindsided. And now I'm like, we're both obviously quite distressed because of the situation we're in. We're now in the hospital, our sisters in bed, having aspirated. The pneumonia was quite severe. She was non-responsive, lying in bed. Like she wasn't on a, she wasn't on a respirator or anything like that, but she was just out lying on the bed, alot you know, unable really to interact with anything that was going on around her.
00:09:44
Speaker
So we sort of had the doctor ask us this question out of the blue. And I just looked at the doctor and I said, is that where we are? Like, are we here? Are we at this point? And they're like, oh, well, they kind of equivocated a bit because no one makes predictions. No one will sit there and say, oh, you've got this much time or this many hours or this many days. You know, nobody makes the prediction, but he kind of equivocated a bit. So my sister and I looked at each other and said, well, do we actually even have the authority to do this?
Legal Responsibilities & Care Decisions
00:10:11
Speaker
And that led us into where I think the really interesting part of this comes is that because of our sister's condition, she's unable to make legal decisions about her own care and her own life in a lot of instances. So she's, even though she's nonverbal, she's pretty good at communicating when she's happy or not happy or wants something. I can't tell you the number of times I've been pointed to and told where to sit, where to move, to get out of the way.
00:10:39
Speaker
to come and give her a kiss to all these things. So she's pretty good at communicating stuff she wants. She's been taught to sign a little bit. If she'd been born 30 years later, she wouldn't have been taught to sign from a young age, but she's only learned a a limited number of signs now. So we went through that. My sister and I said, well, we don't even know if we're allowed to do this. and The way things work in Victoria, where I am, is that my sister and I have been appointed as administrators for our sister Trish. That means that we effectively manage her finances and manage the like the logistics of care. If she needs a hospital visit, we help organize that. If she needs to buy something, we organize it. Even though there's NDIS, which funds a whole bunch of stuff, it's still up to us to come up with the, she needs a new bed. There's still love you know a lot of work for you in that. But what I'm really thinking about there is.
00:11:37
Speaker
You know, Trish had had reasonably good health, given her vision. And in that moment when that doctor posed that question to you, gee, that must have been a big emotional hit. Ah, look, we were totally blindsided. We really were. and I think back to that moment, it was like we looked at each other and said, we don't even know if we can. So even though we're VCAT appointed administrators, we don't know what that allows, we can authorize minor medical procedures, but we can't authorize major medical procedures without consulting VCAT. Like we have to say to them, she did a reasonably significant piece of surgery about 15 years ago. And we were okay with, we were, you know, we talked to VCAT and VCAT said, yep, that's okay. You can do that. She has another condition.
00:12:23
Speaker
which means she has significant nosebleeds at different times. When that becomes, if if instead of just being like a normal little nosebleed, you're talking about really uncontrollable, can't be stopped. When those things happen, she goes in for a procedure where they use a laser to close up some of the veins and seal them up. Just a kind of cauterising of- Yeah, like that's right. So they do that now. They used to do it with hot wires and things, now they do it with lasers, you know? So she has that every few months and we authorise that and it's like ticker box and off you go. So we didn't even know whether an end of life plan was something we were allowed to do. wow um So we had to go and find that out and we found that out and that was fine. We now believe that we are through the office of a public
Planning & Guidelines for Trish's Care
00:13:02
Speaker
advocate. I think it is in Victoria who says, yep, we can do that and we can authorize, you know, whether she's allowed to be resuscitated and all that sort of stuff. So but we've kind of done all of that stuff.
00:13:12
Speaker
But it was just really challenging because in that moment we didn't know. The other thing I was thinking is I'd love a dollar for every time someone says, but doesn't she have powers of attorney or medical power of attorney? Tell us a little bit about that because I think that's such an interesting part of your story because there is an assumption that that power of attorney, enduring guardianship, those things are instruments that are in place, but that's been different for you and your family, hasn't it? Absolutely. Because of Trisha's condition, she's not legally competent to sign things. She can't sign, for for example, when she does pass, whenever that is, she doesn't have a will. She will die in test state and you know, you sort of think, well, what could a person who's had intellectual disability, what can she have that would need to be willed out? But when our mother passed nine years ago, my mother's estate was divided equally amongst the four of us.
00:14:04
Speaker
yeah So she has the share of my mother's estate. So that has to be willed to and she will die in test date. So we will have to deal with whatever government authorities we have to deal with when that day comes. And it's funny because one of the things we've thought about is we thought we we're kind of prepared as well. So we knew we didn't have powers of attorney or medical authorities and all that sort of stuff, but we thought we didn't really know When this happened, like so many incidents that happened to families, it was very, very sudden. yes We had no preparation for this. It was literally that but that dark Sunday night in a hospital room was the first time we were confronted with this because they've been in that time six hospitals and missions and every ambulance asks you that question. Every time you walk into an emergency department, you get asked that question.
00:14:51
Speaker
Every time you're in the ward and there's, you know, the the staff get appointed to whichever bed she's in an award and so forth, you get asked that question. So you get, you kind of almost become not quite numb to it, but you become desensitized. And that first night, but Carol, me and my brother, Michael, the three of us had to get on, we got on a zoom call. It was that short notice. Let's just jump on a call at nine 30 that night and go, what are all the questions we've got? What are all the things we don't know? What are all the things? we have been un ah unanticipated. And we started to go, right, we need to go and talk to this person and that body, and we need to do this research and that research. So you know we literally literally walked off like high school students with a bunch of research projects to go off and find stuff out. How do you get that list? Brainstorm. We literally just sat there and said, what what do we need to know? We need to know this and this. but We've been very fortunate. We have a cousin who's a doctor who has quite a lot of experience in different situations, but he's also had a bit of background in gerontology. So he was like,
00:15:46
Speaker
You can talk a bit, you know, we can say to him, well, what sorts of things should we say? And what what are we thinking about? And he said, well, this is what I did with my parents and like his parents in their eighties and nineties and still with us. But he said, you know, this is, I've had that discussion with my parents and this was what they wanted. You know, when our mother passed nine years ago. She was very clear in her wishes for what her end of life would be like. And she was in palliative care for about nine weeks before she died. She was very clear about what she wanted. We'd had that discussion, but we can't do that with Trish. We can't ask her what do you want because she can't answer the question. And we're not even convinced that she can comprehend the question.
00:16:22
Speaker
No, and and I hope and I sense from this conversation that you actually know Trish quite well and probably your instinct will guide you quite well in terms of what she would want and she wouldn't want. But I think, you know, just going back to that idea of brainstorming, that's been such a common thing that we've heard, you know, about eight out of 10 people say to us in that moment, I don't know what I don't know. And I don't know where to start. There's no kind of task list plan at the moment that but you can actually use to guide you through that. No, it's really, and the information that we needed was not in one place. You know, we, we looked at, we were with VCAT, the office of the public advocate, I think it's called. There was, we had to speak to doctors, we spoke to friends, my brother at the moment, Michael, he's talking to a lawyer to work out some of the legal stuff about what we can, because we're also bound, even though we've said we've got a wish for no resuscitation, no intubation, no defibrillation. We need that recorded somewhere.
00:17:23
Speaker
so that the hospital knows it, but also that the residents where she lives, so that the staff there understand it. um One of the challenges we've got is the house, who ah and I honestly don't want to criticize because they've been um amazing, but they've got a procedure that says if they find someone in a non-responsive state, they are to do CPR. It's a procedural thing and they must do it. And it's, it's interesting cause the, so the place where she lives has 24 seven carers at the house, but the overnight shift is it's not an active shift. So they have someone at the house who sleeps at the house overnight. And if they hear something while they're asleep, they go to, they basically have an eight hour window to sleep. And if something happens during that eight hours, if they don't hear it, they find out about it in the morning.
00:18:08
Speaker
So we've posed the question to them. Trish has an episode of something at 2 a.m. They don't hear it. They come into the room at six and she's non-responsive and has passed away overnight. What do you do? And they said we do CPR until the ambulance gets there. Really? Because they're not legally allowed to declare someone dead. An ambulance officer or a doctor can declare that someone has passed. If you call us, we're going to be there in 10 minutes. You know, but because my sister, Carole is so close by, she can be there in 10 minutes. When I got the call last time, I can be there in 30 minutes. I pretty much don't break the speed limit much doing that, but I get there. try not you try not to oh that That's a really complex example, isn't it? And and the NDAs hasn't got any guidance for you. No, and the NDIS doesn't cover that at all because the the house, it's, there's a conflict, but there's an administrative process that works around the house where she lives. We've said to the staff, we get it. It's not, it's not a you thing. It's a policy thing because it's tied up with the department of health in Victoria and it's a department of health policy. And then you've got the organization that actually leases the house from the department of health and operates it as a care facility. It's like.
00:19:19
Speaker
There's so many parties involved and everyone wants to make sure that they're covered legally with whatever responsibilities they've got. How's Trisha's health now? How's she been doing? Yeah,
Managing Hospital Visits & Care Quality
00:19:32
Speaker
look, so I said before we've had about I think it was six hospital admissions in about six or seven weeks. So I think at one point she was home for less than 12 hours and was back and forth. We've got a much better plan now about what we now have a set of guidelines that says you know It's almost like ah an if-then flow chart. If her condition is like this, then she can be she can stay home and be looked after. so we literally have you know If she doesn't have a temperature and her pulse oxidation is at a certain level, she can stay home. If it's she has a temperature in this, this is the situation. that's you know We have a set of rules that say when we call it the ambulance, when we call a GP, when she gets rushed to ED. We've now got all of that stuff in place.
00:20:13
Speaker
Um, which hopefully will reduce the number of hospital admissions because unfortunately she's in hospital. She slides backwards. Of course. I i was just thinking, and and that's very common with elderly frail people as well. It's a very distressing experience and you often see. frailty and other conditions. Yeah, really deteriorating. I made it something as simple as her nutrition. Like in the course of this six weeks, she's lost 10 kilos. and And she was never a big person to start with. So her weight's in the 50 kilo range now, right um which is pretty light and pretty frail. But it's because once she's in the hospital, all the food she doesn't eat. And part of her condition because of the aspiration is we've had to modify her diet.
00:20:54
Speaker
So she's kind of living on yogurt, soft foods, like she's on what they call soft moist food and and mildly thickened liquids. So she's got this modified diet, which means she's going to struggle to get enough nutrition in. But while she was in the hospital, the dietician said, well, we now have a risk of malnutrition because she wasn't eating the hospital food. When she's home, she eats her three meals. In fact, she's eating six meals a day because they're all small meals that sort of just keep her topped up. And what are the circumstances that are taking it back into hospital medically? What's requiring that? Is that linked to pneumonia?
00:21:29
Speaker
Yeah, so because that's the but the big risk now is further aspiration. So we have a set of guidelines that basically talk about, there's two key measures, I guess. One is her whether she has a temperature. So if she doesn't have a fever, it's probably a sign that she doesn't have it hat does not have an infection, which probably means there's no pneumonia. The second measure is pulse oxidation. So you're probably all familiar you if you've been seeing someone in a hospital, you get the little thing on their finger. which measures the oxygen level in their blood. And if you've got a smartwatch, you probably have that on your wrist all the time. We have a ah level of 88%. And if it's below 88%, that means we talk to an ambulance. If it stays above 88%, it probably means that she's even if she
00:22:14
Speaker
has a mild pneumonia or something is going on, she's actually still getting enough oxygen to sustain her and keep her going. So we kind of have those two measures. And they do that at the house. if For example, if something happened at um four o'clock in the morning, the but um a staff member can easily find those things out. and can make a decision about whether there's an ambulance required or whether she can wait till nine o'clock and get to a GP. Exactly. excellent decision Because we're trying to reduce the hospital admissions. is It was interesting, I was reading a report that was released early this week and I was talking about something like about a third of the care that goes on in hospitals, ah particularly around these situations, is unnecessary and doesn't really do anything to help. And it's unwanted. but It's not. It's unwanted and it's incredibly wasteful.
00:23:01
Speaker
Oh, it is. and And as you said with Trisha's condition, it's actually not good for her. She deteriorates. We've been looking at the research that says one in four hospital beds in the public system are people in the last year of life. yeah Now, that's not where those people want to be necessarily. We're pretty realistic about like Trisha's life expectancy now. We used to joke of almost half-joke, I guess, that she was going to outlive all of us because she had such great care. Now, her other conditions have now caught up with her, I guess, is probably the reality. yes And yeah I don't know whether we're in the last year of her life with us here, but look, if she is, we're doing everything we can to minimise the amount of time she spends in hospital and maximise the time she spends around people that love her and care for her and are with her all the time.
00:23:52
Speaker
It sounds like you've had quite an education in the medical kind of requirements and like an amazing brother and amazing family to Anthony, because that's a ah very loving story of dedication and care. And I think it's yeah know certainly worth acknowledging that ah you've described a really wonderful story of a family caring for someone with significant disability from how you've described Tricia circumstances.
Personal Growth & Societal Progress
00:24:17
Speaker
Tell me what you think that's changed for you as a person. Can you kind of have you reflected on that because those experiences do shape us, don't they? Yeah, it's it's a really interesting question, not something I've thought about before.
00:24:28
Speaker
um I don't think I would be who I am without the life experience I've had. I think that's true for all of us. We're all a product of our environments, the people we know, the people we meet, the people we like, the people we don't like, the the things we do, the things we don't do, all of that stuff. I think we're a product of all those things. I think the one thing it has done is that I just sit there and go, you're just another person. I look at my kids and stepchildren who have gone through school with kids in their classrooms, in wheelchairs, with Down syndrome, with all sorts of other conditions, whether they're outwardly vigil um issues or whether they're other things that are ah less like less obvious. And I think our the generation that's growing up now is far more tolerant and far more able to just accept people as they are and accept that diversity. I think growing up, we were less tolerant of diversity. I went to a primary school, for example, that was a Catholic primary school, but somehow or other I was the one
00:25:38
Speaker
because everyone else was kind of like Irish Catholic or more Anglo-Saxon Catholic rather than Mediterranean Catholic. You're all just kind of kids. yeah And if with the kids in a wheelchair or not, you know, has had an amputation or has ADHD or who knows what, kids are just tolerant now. I think we we're generally becoming a more tolerant society, which I think makes the people that are intolerant stand out more. Well, that's exactly right. But it's also just an example of one of the many things that have shifted right over that last 20, 30 year period where we did have stigma and taboo and we didn't have language.
00:26:19
Speaker
situations like Trisha's were much more institutionalized than the story that you've shared. But it is really heartening when you think about the progress around disability, around mental health. That's certainly really motivating for us in the work that we're doing that we can bring last stage of life issues along that same path. Yeah, absolutely. I mean, ah I think one of the great things has been that we're finding there's a lot more support around for us. you know doctors Even though they there tends to be a focus on fixing problems when you're in a hospital, for example, and they go, like well, we need to talk to a dietician about what food she's eating. We need to talk to a speech pathologist about a swallowing reflex. you know So we sit there and we hit all these medical solutions for problems. Actually, one of the things we learned when my father was ill towards the last part of his life was
00:27:08
Speaker
He had a litany of different specialists when my father passed away he had diabetes type 2 diabetes it had heart disease in a major heart attack and couple of strokes. He had osteoporosis he had emphysema from when he was a smoker although we haven't smoked for the last thirty five four forty years of his life or something he had a whole bunch of different health conditions and yet for every one of them there was a specialist. And at the end, we actually just said, we went to the family GP who blessing had been the family GP for still is my sister's GP. And he was the guy that delivered my younger brother, literally talking about a GP that's been in the family for 50 years, more than 50 years. And we just went to him and said, we need someone to actually take care of him.
00:27:51
Speaker
not to take care of his heart or to take care of his bones or to take care of his whatever. So we just need someone to take care of the human and as a whole coordinate. And I think that's something that the health system is starting to get better about. My wife has worked in the health system for almost her entire career and is now training to be a nurse. She said it was about not having specialists for everything, but having a person that actually looked after the human and the whole person, all their needs, not just the needs of a specific ailment or a specific disease. and And then compounded by the fact that
00:28:26
Speaker
quite often those specialists are not in dialogue with each other. don't That's a don't get me started conversation. That's a whole nother show. That's right. Right. yeah Thank you for a great conversation and for all of your openness and honesty around that we were, you know, wishing you guys all the very best and just acknowledging the amazing family that you are around Trish. but I look forward to keeping in touch. Thanks, Melissa.