What Gogglebox didn’t show: Kerry & Izzy Silbery on love, dementia and letting go

Foreign. Hello, my name is Melissa Reeder. Welcome to Agehood, the podcast for people who are quietly carrying it all. Aging parents, adult kids, work careers and their own next chapter. And if this is sounding like you, well, you are in your age hood and it's time we talked about it. You might know Kerry and Isabel Silbury as two thirds of the beloved Mother daughter trio from Gogglebox Australia. And if you don't, let me tell you a little bit about them. For eight years, alongside Emmy, Kerry's mother and Izzy's grandmother, they shared their lounge room, their laughter and their lives with the whole country. But during that time, they were also navigating something deeply personal. In 2022, Emmy was diagnosed with dementia. And what followed was a long, slow shift from Emmy's independence to aged care, from being the heart of their home to slowly and tenderly letting go. It's about finding the pieces you can connect on. And for us and a lot of people with dementia, it's music and having a laugh and then I can sort of connect with her again. Yeah, it's a different relationship. Sadly, Emmy died recently and we send lots of love and strength to the whole family. In this episode, we talk about how to support someone that you love when their memory starts slipping away and the guilt that you feel when you place a loved one into care. We talk about navigating the aged care system and honouring someone's dignity as their will becomes harder to hold onto. And while this chat was recorded before Emmy's death, we felt that a lot of the moments in this conversation will really help people who are also navigating dementia with someone that they love and care for. This episode is a love letter to Emmy and to the generations of women who care. Questions quietly, fiercely and without applause. This episode of Agehood is brought to you by Wellways Carer Gateway. Being a carer can be rewarding, but it can also be overwhelming and isolating. At Wellways Carer Gateway, the team really understand the highs and the lows of caring, because many of them are carers themselves. Whether it's help navigating services, a break when you need it, or just someone to talk to, support is here. It's free, it's local and it's tailored to you. Call 1-800-422-737 or just search Wellways Carer Gateway to connect with your local team. A will is vital, but it's not designed to keep up with the personal, the practical and the financial details of modern life. Things like passwords, bank accounts and bills. They often go unrecorded. And while life is complicated, a legacy doesn't have to be. That's where a letter of wishes from today's sponsor, Bill Will comes in. It's a simple and secure way to reduce stress for your loved ones, share your values and preserve your voice. And it can save up to 200 hours of admin down the line. Visit billwill.com au to get started. So we're here on the couch, you said. It feels a little bit Gogglebox, like brilliant. Thank you for having us. Yeah, thank you for coming in. It's really, really great to chat with you both. Let's start with Gogglebox. Izzy, when you first signed up for the show, did you ever imagine that it would become such, like a deeply personal story and that kind of multi generational element would become so resonant? I didn't. However, we did, we did sign up with the sort of view that there weren't any real women of our, you know, age group of three generations on mainstream media. So that was the real drive for us that, yeah, we wanted to be visible. So, you know, we, we want to see those sort of women reflected back at us. Absolutely not. Did we think 10 years later we'd still be on it? Well, I told Isabelle I couldn't possibly be on TV because I work in psychiatry and I didn't want to have my whereabouts known. And Emmy said, oh, shit. She went into complete denial. She said, no, I don't want to be on telly. And I said, oh, well, it's probably not going to last anyway. The show, I mean, it's, the concept is a bit wild. Ten years later. Ten years later, yeah, and she certainly warmed to it. She was the oldest woman on tv. She was, yeah. Loved, loved the dynamic. Kerry, what was it like for you having the three generations of women sitting on the couch each week? Well, it was just normal for me. I mean, we used to, we still do get together all the time and, you know, have a cup of tea and a bit of a natter about our day and, and so it was just normal. There was nothing unusual about it at all. It's, I think, what people loved. And, you know, we're here talking about, I guess, the three women on the couch and that intergenerational dynamic. And of course, Amy, your mum isn't here today. Can you take us back to the moment where you first noticed some changes with Emmy? Take us back. I know there's a lot going on in your lives at that time. Yeah, there was and look, from my perspective, we were filming at the time and we just had a lot of trouble with her hearing, which we thought was her hearing. And so production would tweak the audio and the TV and all of that stuff and then gave her a special headpiece. And then over the seasons, I think it was a couple of seasons, she just wasn't following content. And so that was really hard for us to film. Mum and I would be, you know, back and forth, but then we'd say, do you know what's going on? And she'd be like, yeah, but she wouldn't. And that happened privately too, when we weren't filming, conversations just weren't flowing. She wasn't following things. And then, because Mum lived with her, I think Mum got another sort of inside view of where things were escalating. Well, there were things like she wanted to sleep all the time. She would say, I can't be bothered. You know, I'd encourage her to go down to the library or go to the groups that she was belonged to at the community center and she'd just say, I can't be bothered, I just want to go to sleep. And then she started. I would make dinner for her every night and when I went out, I'd put it in the fridge and I'd say, don't forget Mum after the news, you know, go and put it in the microwave. And I'd get home at 9:30 and it was still in the fridge, so she'd forgotten to eat her dinner. And then it got to the point where I was going through putting some laundry in her cupboard and I found four Webster packs of medication, so four weeks of medication in the cupboard. And I said, mum, have you been forgetting to take your meds? Because I didn't supervise it. I mean, I thought she was very capable of. And she would have been very offended if I started doing that, of course, yeah. And she said, what do you mean? I've been taking my medication? And I was there that day and it was the most awkward. Kind of makes me cry thinking about it. It was so awkward because Mum's looking at me saying, no, there's something. And I'm like, oh wait, do we believe her? And she's. Till she's blue in the face like, no, the pharmacy must have mucked this up. And so we were bouncing like, well, if the pharmacies mucked this up, that's really bad. Like we have to call them and say what's going on? But I guess holding your own doubts. As well and Then I could just see her embarrassment sort of creeping in. And that's when I said, mum, I don't. I think she's not taking it well. I rang the pharmacist and said, andrew, have you been doubling up on Mum's meds? And he said, absolutely not. You know, our system's very stringent. He said, she's forgotten to take it. Oh, gosh. And that, you know, their heart, like proper pills, that she needs to take. And four weeks is quite a long time. A long time. It does happen pretty incrementally, doesn't it, those changes? I don't think we kind of wake up one morning and everything looks different. You just notice subtle changes over time and it takes everyone a while to put the pieces together. But also there's a very strong element of denial. Yes. And I realised that when Mum was almost hitting 90, I said, Mum, I really don't think you should be driving. Oh, what do you mean? I'm a very good driver. And I decided to organise an aged care assessment and I lied to her and I said, mum, part of the aged care assessment is you have to do a driving test and a person will quiz you on the road rules and then take you out in the car. Oh, right. Okay. So she thought because it was part of the aged care assessment, she had to do it. And so I organised for the assessor to do the test and she did the written test and then he took her out in her car and he said to her, now, you've got two options. You can either do the Nepean highway test or you can just do the local streets. And she said, I'm a perfectly good driver, I'll do the Nepean highway test. So he takes her out, comes back and I'm thinking, oh, my God. He said, she did 50 on the Nepean highway and 80 down the side streets. And he said she can't have a driver's license. And she blamed me. She said that I told him that she shouldn't be driving. So she was really angry with me for a long time over that. But I think that's uncommon because I. Knew I had to keep everybody safe. Yeah. And I think the escalation was the safety for me. You know, Mum, just watch the bangles. Yes, darling. The safety issue, I think the cognitive decision making around what's a good idea? You know, I'd see her go, oh, I'll grab the biscuits, I'm just going to get the stepladder. And next minute, you know, she's 93. And on a stepladder. And I'm like, no, no, Emmy, please just let me do it. No, I'm fine. You know, it was this const. I'm fine. And then, as family members, you're not trying to tell her what to do and treat her like a child. It's just such a predicament. Because Mum and I did find ourselves speaking like that, and it's a horrible way to be, and especially when she's mothered us and she's the matriarch and she's changed my nappies and she's looked. After me and all the roles and all. And then I'm trying to keep her safe. Yeah. And saying things like, have you been to the toilet or do you. It's just weird. And the walker. Do you remember the whole issue over the walker? Part of the aged care assessment is that they do a mobility test and the physio said, she has to have a walker, she's unsafe and she needs to even use it in the house. And Mum just said, I don't need a walker. What are you saying? You know? And so we had to make sure that every time she left the house or we took her out somewhere, we had the walker. So that you then are in the situation of having to monetize that, which. Yeah, makes things really difficult. Were you guys talking at this stage about what you thought might really be happening? Were you talking openly about not dementia? I thought it was just old age. No. Yeah. We never thought it was dementia. You know, we thought that her lack of comprehension was her hearing. She'd forget to put her hearing aids in, she wouldn't charge her hearing aids, you know, all that. And I was constantly taking them back to be reviewed, to be checked. You know, all of that. And it probably was partly. I mean, they say that, you know, dementia is increased. The onset of it is increased when people refuse to use their hearing aids because they just can't. Their brain just doesn't compute. Yes. And even those that have, you know, their hearing aid resolved, they can probably hear better than we can, but they can't process. No. Yeah. Yeah. That's some. That's something. Well, I've seen that in my own family, but I also hear it a lot. Was there a point where you tried to open that discussion with Emmy? How'd you manage that so hard? No, we didn't. No, because the shock of the geriatrician's diagnosis was too much for her. She just went into complete denial. And she would constantly say to us, he said I had mild dementia. That's perfectly all right. I think if we rewind as well. Mum was so proactive and if any listeners are, you know, thinking that their loved one might be deteriorating in that way, Mum just is a doer, you know, she researched what to do, you know, took her to the gp, the GP then referred on to geriatrician. She was assessed. And I think that sort of support and outside help really takes away the awkwardness and guilt and blame and anger and resentment between family members because it's a third party professional doing it. And you kind of sit back and, you know, you send them secret emails and you have a little chat, you know, outside the door, but they're the ones sort of saying, hey, like there's a diagnosis here and it's dementia. It's not Mum saying it or me saying it. But also, I don't think we needed to discuss that with Mum. Once the geriatrician diagnosed her, that was it. That was our job then, to keep her safe and that we would just let her, you know, be in her own little world. She didn't need to be constantly reminded that she was going gaga. She'd always say that when I'm going gaga, just tell me, am I going gaga? No. But also, I think one of the important things that listeners need to know is that when Mum came to live with me now, nine years ago actually, and I organised the aged care assessment, I did all my research because I'm a teacher, you know, I'm pretty thorough in being well organised and I found out that there's a federal organization called the Carers Gateway. Yes, there absolutely is. And I registered with them and that was probably one of the best things I ever did, because pleased to hear that the best part of their service for me was, was that they connected me with an aged care counselor and I got six free sessions with her local woman. She had an elderly father and her advice was so invaluable to me. But right to the point of all the things that she told me I needed to say when I was negotiating with various services, you know, aged care and the local council and all that, geriatricians, everything, she said, these are the words you need to use, you need to exaggerate your situation. Don't say things like which so many women say, I can cope, it's all right, I can do this, I can do this. She said, just tell it like it is, because you won't get what you need if you don't. She was fabulous and she Organized. She. I asked her when it came to the point of aged care, because I knew I couldn't keep Mum safe, I said to her, which, where would you recommend within this area? Because I want the mum to be accessible to us. Because, you know, we want to see Mum all the time. I don't want it to be a long journey. Where would you recommend in this area? And she said, there are only two I would recommend here. And don't you need that? You need that kind of distrusted voice when everything else is so unclear and you're trying to figure it out. I'm really glad you raised the Carer Gateway. Cause it is, it's an incredible program. It's federally funded. Not enough people know about it yet. And I think when we look at everything you've just talked about, Kerry, in particular, through the lens of this Sandwich Generation cohort, women managing exactly what you've just described, that's a service that's designed exactly to support people going through it. So tell me a little bit about what life was looking like and feeling like for you, Keri, at that stage, with everything that was going on. Well, being part of the Sandwich Generation is. It's a very common thing. You know, I ask, oh, I'm dealing with all my girlfriends now who are going through this. You've got, you've got kids, your own children who are going through a difficult time in their lives. Either cost of living crisis or divorce or, you know, all those things. They've got young children, you've got elderly parents. So. And I was working, you know, I'm not working now, but then I was working in a very demanding job. I was working in adolescent psychiatry. And. And you're juggling all this stuff around. And do you actually allocate any time to yourself? Do you do any self care at all? You don't, because you feel selfish and guilty. You don't do it. So I ended up with. I ended up having two shoulder operations. And the surgeon looked at me and he said, you're part of the Sandwich Generation, aren't you? And I said, how do you know? And he said, because you're doing a lot of lifting. Lifting walkers, lifting, children, lifting. And emotional. Absolutely. And the emotional burden as well. And sometimes I used to curl up in bed and cry myself to sleep, saying out loud, why isn't somebody looking after me? I need somebody to look after me because I was looking after everybody else. Yeah. And Izzy, you were pregnant at this stage when you were going through all of this with Amy's diagnosis. How is this all kind of happening for you in your life? It was hard. It was really hard. I mean, I. I could see Mum so stressed and I didn't really know how to help because I had my own. Well, you couldn't help me. You didn't have the energy all the time. Yeah, it was hard. And we pulled the pin for her for Emmy on gogglebox. We obviously shared the diagnosis with the producers and I think we thought it was time to not put her in a position where the dementia would be somewhat embarrassing. Embarrassing for her and. But at the same time, we didn't want to keep it a secret. So I think it was very important for our family to be honest with what was going on for our family. And it was just a really. It was a sad time because we loved being on the couch with her and not having her was like. There was a big hole for us. Oh. There was a massive gap of inappropriate comments. I've also seen footage where you point to that. Was it called the Queen's Chair? That chair, yeah, yeah, yeah. Gosh. And, yeah, there was. It was really kind of a sad moment. Also sad because she hadn't passed away or anything. She was. She's still with us, but not with us. And it's anticipatory grief, isn't it, when getting. Come up to me in the street and say, I'm so sorry to hear about your mum. And I said, what do you mean, she's still alive? Yeah. But then so much has changed. Yeah. And even the process of having my. Daughter. Being pregnant, and I'd go and visit her every couple of days and. And every couple of days I'd walk in with this enormous stomach and she'd. Be like, oh, what's happened to you? Gosh, are you pregnant? When did that happen? When did that happen? Which husband's this with? And I'm like, okay. So I put a little thing up on her wall of the ultrasound so she could remember. And. Yeah. But we. We love going to visit her. I think it's like, Friday afternoon's happy hour is one of the most beautiful times. Glass of wine. Glass of wine. Bit of live music, some Bollywood dancing, perhaps. Oh, I love that. It's just that you just see all of them, whether they're, you know, they've got dementia or they're sick, they just come to life. They are so happy. And she is so happy to have the music and singing along and having us next to her. It's just so nice, I think. I don't know about you, Mum. But the guilt really dissipates because you think she's safe, she's being fed, she's well looked after, there's medical people here, she loves it. She loves it and they love it. Talk to me a little bit more about the guilt. What? What? How does that come up for you both? Because I think that's so common. We know that, you know, residential care is the right decision for so many people at the right time, but, gosh, it's like an ocean of emotion for families to go through. Yeah. I think for me, the guilt is that for so many years, a lot of people, the fans would say, oh, you're so. You're so. Emmy's so lucky to have you both, that you both are there to care for her and make time for her. And, you know, lots of families don't do that. And with her in care now, I feel, you know, like we're not. We don't get to spend that time. Well, she's not a part of our life on an everyday basis now. Even though we see her several times a week. I can't take her down to Dar ESL for a drink and I can't meet her at the park for a walk. And so that's the guilt that. Because if she was still living at Mum's, I'd see her all the time because I'd go to Mum's and, like, you know, I'm just. It's that I don't. That's the guilt. But also. Can I say it? Yeah. The guilt that I feel is that I've abandoned her. Oh, yeah. It's like the same feeling you get when you drop your kid off at the childcare and they're crying for you and they're like, mummy, Mummy. It's that guilt. Except she's not crying for us, but when we say goodbye, that's hard. Like, of a visit, she's like, oh, you're already going. Oh. And you're like, you know, have a good night. And she walks away. And you're kind of like, oh. Coming up, Kerry shares the challenges of navigating aged care services without clear guidance and how Izzy processed the shift in family dynamics while also navigating her own motherhood journey. If you're supporting a family member or a friend you might be a carer with without even realising it. And that's where Wellways Carer Gateway comes in. They offer free, tailored support programmes for carers, including counselling, coaching and peer support groups to find out how they might help you call 1-800-422-7737 or search Wellways Carer Gateway. I'm guessing, Kerry, in your professional work, you know, you, you are staring down complexity like this all the time, but suddenly it's being shown back at you and your family. And also when you were still living with Emmy, you were, you were stretched paper thin to the point where you needed shoulder surgery. How do you, how do you make sense of that now, where you're at knowing that she did need extra care and it couldn't be in your home? Look, I. Mixed with the guilt is the acceptance that all the way along I did. The right thing 100% for her, the best thing for her, even though, I. Mean, I had Isabella's 100% support. But even though my siblings and other relatives were in complete denial, and if it wasn't for that aged care counselor through Carers Gateway, I probably would have had a complete separation and rift with my extended family. Yeah, we even had, we had family therapy. We did. I, I asked for it. But you see, this is part of the needing to know what to say to whom to get what you want. Yeah. So I'd finished my sixth sessions ages, years before because Mum lived with me for seven years. And I rang Carers Gateway and I said, we need family. My family's in crisis. My mother has to go into care. She's got dementia. And my family is in denial. And I think this is very common. I'm not sure if anyone's familiar with mother and son, the old mother and son. It was the mother and son dynamic. It's literally the mother and son dynamic. RUTH Cracker and I'm sure that this happens in families where the other siblings and aunties and uncles are so far removed that they don't see what's going on and they are in denial because it is their mother. And then Mum, my mum becomes the devil because she's getting things moving along, she's putting in things in place and they're kind of like, no, she's forcing. The realization, she is forcing the reality. Of what happening in with their mother. And it was so horrible to watch my mum be treated like that. But I am imagining there's going to be so many people listening to this who are just going to grab hold of what you're saying because, you know, in the work that we do, about 25,000 people have worked with us around these issues and that kind of disconnect that you're describing, Izzy, it can be a geographic. People can be living in different States or countries, they may not have seen mum or dad for two years. So in their mind they're a more, well, stronger version of their 92 year old self than what you're seeing every day. And then there's that very painful spectrum from denial to acceptance, you know, and it's. We're all hardwired for denial, aren't we? That's how we cope with hard stuff. But your moving into a gentle acceptance that your mum is increasingly unwell, increasingly frail, entering different chapters of her life, but you've got to bring the other people with you and that's so painful for everyone. And this is where the counsellor was so helpful because she said, kerry, this is a very typical scenario that you're dealing with that. What's happening with your extended family is there's grief and there's resentment. So you're dealing with your siblings. So there's all that sibling rivalry, sibling resentment that comes up. You know, they're dealing with the harp. Strings that get plucked when we're back in. Those family members pressing all those different ways. Yeah, totally. And she said that you're going to be blamed for everything. But the scenario is that the other members of the family will target the carer. It's also so common of the sexes that I'm sure you've seen it as well. It's often the daughter or daughters. 70% of the time. Yeah, it is the daughter. It's often the eldest daughter. Yeah. And she's caring for a parent or a partner. So not only to deny that there. Are many, many men doing great work and carrying these roles, but it is, it's a gender. Yeah, it's a gender thing, definitely. So what I asked her to do was I said, we need a family therapy session, can you organize it? And she said, oh, you know, you finished all your sessions and it's very unusual for us to do this, we don't normally do family work. But I said, this needs to happen, otherwise I'm going to burn out and I won't be able to look after my mother. So she went to the top and she organised a two hour family therapy session which was. Did she run that for you? She ran it. She lost to this amazing woman that. You found and I gave her all the parameters. I said, this is who you're dealing with. These are the issues. You know, working in psychiatry helped a lot. You knew exactly how to set that up. These are all the issues. Yes. And so when we arrived, she had it all on a whiteboard. She was Fabulous. And I didn't have to say a thing. She did it all. She said, this is the reality of the situation. This is what your mother's got. This is how you need to deal with it. These are the consequences, the options. She went and she went round the room and she asked each one of them how they were feeling about it and boy, they didn't hold back. Oh, you were on a bloody zoom thing, weren't you? And I think that the point of having a third party again is a really good thing, whether it's, you know, in therapy as well. Because if, if, yeah, you're trying to deal with your extended family, I think therapy is an excellent idea because you get to sit back and let the therapist do their work, do the work. That needs to happen. What did you both see change after that? With my family, yeah, with the dynamic. It took a while. So the immediate response was they were still, they were really angry with me and it was all directed at me in the session. She did her best to manage that. We left the session and I was completely washed out. And I said to her, well, I think we'd better all go off and have dinner together now. And she looked at me like, are you crazy? But I just thought, no, the boil has got poison in it. You're not going to heal it unless you squeeze all that poison out. This is my opportunity. So we went out into the street and my brother said to me, so are you saying that Mum can't live with you anymore? And I said, yeah, that's what I'm saying. And he said, well, that's not good enough, that's not what I want. And I said, so are you two prepared to take Mum on and look after her and have her at home? And they both looked at me and they said, no. And I said, well, there's no other option. Then she's got to go into care. The other interesting thing about really complicated. Family dynamics, and I'm going to say. Complicated but not uncommon, because every family's got a version of this story in one way is that we see that results in a lot of low value care. And there's a lot of evidence that says when families aren't on the same page about what's important to their elderly relative or family and they're not aligned around care goals. The brother will fly in from Queensland and want everything done to save Mum. Mum might be 96 and very frail and at the very end of a well lived life, but because that brother's not quite the same point of acceptance. It results in a whole lot of low value futile care. A lot of evidence around that and just a horrible experience for Everybody, both the 96 year old person and everyone around. So I think it's a. I'm really glad we got to draw that out. It's not something that gets enough attention. It's. Nobody wants to talk about it. It's like death. I mean, are we going to COVID death in this conversation? We certainly are. Let's take us there. Carrie. Well, it's. It's mum's 96 and she's got a bad heart and she's got bad lungs. I cannot believe that she survived to 96. Incredible. It's her, you know, it's her convict genes, I think. And so when I went on a big holiday a couple of years ago now, I thought Mum might die while I'm away. My. I need to organize it now before I go. So I told my family that, you know, that I was. That I'd organized mum's death and funeral and years ago, years before I did that advanced care directive with mum. So I knew exactly what she wanted. So I rang a funeral director that I'd seen operating with various funerals and I thought, I don't want. What do they call it? They call it aged care. Places call the funeral directors a certain name. The body snatchers and aged care. Most aged care places have contracts with funeral directors. So when people are struck with the grief, they haven't thought about the funeral, they haven't thought about their parents, death or anything. They're very vulnerable and they take on aged care. This happens in hospitals, the $12,000 coffin and all this awful stuff. Yeah, what a time to be trouble. To make any kind of money. I knew Mum didn't want any of that. So I organized for this wonderful two women funeral director business called the last hurrah. I organized for them. They've got it all written down that when they get notification from the aged care place that mum's died, they come in, they take her away, she's cremated and then they keep the ashes until we're ready as a family to have. A memorial in whatever time frame that took and that. Did you talk to your siblings? I told them and they were horrified. I was going to say. How did they respond to that? Yes, well, they weren't horrified at what I'd organized. They were horrified that I was talking about it, that I was talking about Mum dying. And recently, most recently, Mum was very, very sick for three weeks. She had a lung infection I thought, this is going to be the end and I'm preparing them, my brothers and my family for this and they're still in denial. What are you saying? She could die? Yes, I'm saying she could die. She's 96. But when mum. It's funny what comes up for me, you know, Mum just said, I'm preparing them. My whole narrative that I've been trying to tell my mum is, it's not your job. Oh, yes, it is. No, you just focus on Emmy and if they're not coming to the party, which they haven't, immediately. Oh, I see what you mean. That I shouldn't be briefing them all the time. Yeah, that's true. That you're taking on extra stuff. Just let. Just leave them be. But you know why I'm doing that? Because if I don't keep them informed, then I cop the shit. Why didn't you tell me? You can't really win. Yes. In that role. And I think, again, that's a classic part of the profile of the role that you've taken on again, trying to do everyone, everything for everyone and knowing that you just can't keep everybody happy. It's so hard, isn't it? Because when you lay this story out objectively, of course, Emmy's in the last stage of her life, although she wants. To be a hundred. Does she? She might. She may. Well, because she's being so well looked after. I couldn't do what she's. What they're doing. So true. I couldn't possibly do it. Like, yesterday, the nurse in charge rang me to say that they'd done the weekly way and Mum's lost or not weekly way, it must be a monthly way, and lost three kilos. And I said, oh, that's unusual. And he said, yes, we're getting the GP in, we're going to do some bloods, we're going to find out why she's losing the nutritionist. We're consulting with the nutritionist. Because she was losing so much weight living with Mum, she didn't forget to. Eat and then she regained weight. When she went in, she went in. She's got this great big belly. She loves her. She's. Because. And it's a social piece too, isn't it? In the routine of the day. And I hate saying this, but it's the truth and it's awkward, but my child eats way better at childcare, sitting at the table with all the children. Oh, yeah, I see what you mean. You know, that social thing. The social thing. And Also, we would nag her at home, like, come on, come out for a walk with us. Come on. Come and, you know, have lunch with so and so. And she'd be like, no, you can't be bothered. And I'd be like, no, you're coming. Anyway, these nurses go, emily, we've got yoghurt this afternoon. She's looking. She goes, okay. I'm like, oh, so unfair. It's because she's a people pleaser. Yes. And she loves them and she loves the nurses. She's like, okay, I'm coming. But at the beginning. At the beginning, she didn't want to get out of bed. She just wanted to sleep all the time. And they would come into her room and say, we're running the dance class now, or whatever. And she'd say, no, I want to stay in bed. And they would leave. And I said to them, no, no, you have to make her go. If you make her go, she'll have a great time. And they said words to me like, oh, we don't make people do anything. We encourage them. And I said, well, you need to encourage very strongly, firmly, firm encouragement. And I've done a few of these yoga things with her and stuff. And she's. She's so funny. She still. They do all this and then she's like, look at that handsome man over there. She's a shocker. I wonder. And I'm like, emmy, Sherry, she's a shocker. She is a shocker. Or she says things like, don't talk to her. She's a bitch. That's the lovely part about dementia. Because my mum. There's no filter. My mum is so nice. She's been nice all her life, to her own detriment. So nice. But the dementia occasionally pops out and she'll say, do you remember that time there was a woman who was going right off at one of the staff and Mum said, oh, just fuck off. Did she? She would never say that. Yeah, yeah. It's Derek. And she. She steals things in her walker. She's got, like, moisturisers and people's hair brushes. She's looking out for herself. Yeah. She's like, oh, that looks good on her. And chocolates when she's got diabetes. I said, where'd you get all this from? See, that was another thing. I had no idea she had diabetes. But as soon as she was admitted and they picked up a medical workup, they found out she had diabetes. I want to ask you both a question that I know will be hard. Do you Have a plan from here. Now, I know you've talked about a funeral plan for Emmy, but what we know sometimes happens is that elderly people have a range of complications from pneumonia to falls to different infections. And I'm just curious to know whether you've talked about some of those circumstances and how you might make decisions together to reflect Demi's best interest. Have you been able to talk about that side of it? Yes, well, so Mum's had pneumonia three or four times before COVID Every winter she used to get pneumonia and be admitted to hospital. And when she was sick, most recently for three weeks and had to be isolated on antibiotics, we couldn't go and see her. There was a point where they called me and said, we're just letting you know that we might need to call an ambulance. And I said, I don't want you to call an ambulance. Under what circumstances would you be calling an ambulance? And they said, well, if she becomes unconscious. And I said, I don't want you to call an ambulance. If my mother's dying, she dies with. You don't want her to die in hospital because she feels very safe where she is and very happy. She loves all of you and she. Knows that you'll look after her and that's her home. So I don't want. I don't care how bad it gets. I don't want you to send her to hospital. So, yeah, Kerry, thank you for being able to say that out loud, because you've just put words to the parts of this that people do not think about. And what happens as a result is that person does end up in hospital, they have a horrendous ambulance ride. They might sit out the front of a hospital for an hour waiting to get in, and they're in ED settings and it's. It's not the place and it's traumatic. It's so traumatic for everybody, for the person, for their family and for the clinicians. And it's those conversations and that kind of resolve and understanding between families which is so important. You just need to know what to ask for and be brave in asking it. And unfortunately, so many of us, and I'm talking about women, just sometimes don't want to be the bitch and don't want to. You don't have to be a bitch, you just have to understand that assertive. The staff are dealing with a lot of shit and if you're supportive of the staff, they'll be supportive of you. And I remember at one point a couple of years ago, Mum was. It was not long after she was admitted, actually. And she was really, really sick. Like we thought she had Covid. And they were absolutely fantastic. And they had this service that is attached to. I think it was the Alfred or Monash, I can't remember. And they actually brought in a geriatrician and a geriatric nurse. They brought in a portable X ray machine and they did an X ray of her lungs. They worked out a whole medication and care regime and they did it right there so she could stay in her bed where she was with familiar people around her. And it was just the most incredible service. Like, normally she would have to have gone to hospital, but they dealt with it all there. They just had the most wonderful team. It is possible. It just takes some. And you have to ask foresight, some planning and just communication. Yeah, this. This is how we would like this to be managed. Because I think a lot of the time without those things, there's a crisis at 2 o' clock in the morning and the ambulance is called and the whole thing is just set into motion. Just recently, when she was sick and they were calling me and saying, you know, we need to call an ambulance, I had a conversation with my fancy man about possibility of palliative care at home. Who's your fancy man? It's just man I have. I'm intrigued. She means her partner. I don't. Partner's too legal. We're not legal and he's not my boyfriend because I'm far too old for that. Well, now I understand. Okay. Anyway, brilliant. So I said to him it was the guilt, you know, I said to him, I would really like to think that Mum could die at home with me. And I think, you know, I'll talk to my GP about palliative care and I'll try to find out if she could be brought home and, you know, if medical people can supervise her while she's dying. And he looked at me and he said, do you really think your mother wants to be brought home? Considering that it hasn't been her home now for two and a half years? Do you think, really think that she would want to die here? That she wouldn't want to die where she is, with all those lovely and us, the United nations, of people that look after her, that love her and can keep her? That's who said it. That's. That's where she's familiar and most. And he said, think about it, think about it seriously. And I realized, yeah, actually, you're right, it's all my. It's my guilt. Driving this idea that Mum could die at home. But having that conversation sounds like, helped you to reconcile that. I mean, the numbers around this are really confronting when we think about the aging population. In the last 12 months of an elderly person's life, they spend about 33 days in hospital over four episodes. About 40% of that is considered low value, like unwanted, unplanned, unnecessary. And that's both sad and traumatic and really costly. It's something we've absolutely got to do something about. And a lot of us would say, yeah, we want our care at home, we want to age in place and if we can die at home, that would, would be a wonderful thing. That's about 5% of people actually having that experience. So it's not, it's not a case of waving any magic wand and saying, let's make everybody die at home. This is going to be a, you know, a fabulous thing. It's about how do we reduce preventable hospitalizations, reduce low value care, understand where people want to be and what's important to them and make decisions that reflect that. Yes, but you've got to talk about it. And you know, throughout her life, she would not want to talk about it, you know, and we'd force the conversation. Oh, she'd say, oh, just when I've lost, when I've lost my marbles, just top me off. And that was as fun, you know, it was using humour. But we'd be trying to have like, no, no, but can we talk about. But Mum's never avoided the discussions about death. I mean, she's, she. When I went through the age, the advance care directive with her, we had quite a laugh. Did you? It was quite funny. Cause it's very detailed and it says things like, I was with you. I remember that. What? Do you remember that? Religious bits. Yeah. We're sitting down, having a wine at your place and we went through this whole form of like. And do you want to, you know, a priest to do the things you're like, fuck, no. And then do you need this? And she's like, no, no, no, that'd be too boring. I don't want everyone bored. Oh, you're talking about funeral. Yeah. Or just. And then, you know, the, the details of when, if she's dying, like, would you want a priest to like, say things? Who do you want there and who do you want? And I went through the whole list and she said, nah, don't want that. Nah, not them. You got to break that news to people too. No, I did and it was Very, very difficult because my. My rationale is that I keep everybody informed. So I sent them all a copy of the advance care directive and I got back highlighted bits that they disagreed with, happy about. So then I had to. Did you get back any recognition that you had done a really important thing. And a really hard thing? Really hard thing. But what I had to say was, don't blame the messenger. Yeah. This is what she. And then, of course, there's the. Yeah, but you put the words into her mouth. Well, no, actually, I didn't. This is what Mum wants. It's. Don't blame me. This is what she said. I've got a witness. Yeah, but then it's conspiracy. You've done one of the most important things. Can I ask you both, in this kind of story of the long goodbye of dementia and thinking about listeners out there who are in the sandwich generation, managing increasingly elderly parents, people with dementia, what would be your words of advice? What would you want them to hear you? Well, it's funny you should ask that question because last night I had dinner with one of my best girlfriends whose mother's just turned 90 and has a dementia diagnosis and she's living. Well, she's living there part time, so my friend is living. My friend is living part time with her mother and she cooked dinner for all of us. And she said to me after dinner, I just feel so guilty. And I said, why do you feel guilty? You're doing the best you can. What you need to feel guilty about is the denial that your mother needs intensive care now. You're trying to do everything and it's just you. You will lose the plot, you will lose all capacity to look after your mother if you keep doing it like this. You need help. So I've been trying step by step to guide her through the process, but she keeps thinking she can do it. I can do this. The long goodbye, I think, is. Is hard because they don't know what's going on, but you do. And that's something you need to process and work with throughout that time. And spending time with them is really different. And I feel a lot of guilt because it's just not how it used to be. But then I feel lucky that we were. We are still so close, but I just. It's so hard that I can't get her the way I used to. But so lucky that you've still got her. I know, I know I do. But sometimes, and we all have such funny moments. We do have funny moments. Yeah. But there's still a Lot of loss. Yeah, that. It's just it. That relationship is not the same. And I'm more of a carer, which I don't like, and I'm sure Mum didn't like is. Yeah. Like I said at the start, it's. Yeah. Caring for her. And not necessarily I have to stop myself and just enjoy her instead of making sure she's safe, which is what I do. I fold up the clothes and I, you know, tidy up and leave Isabelle to do the entertaining. And I think it's about finding. My advice to people listening about the long goodbye. It's about finding the pieces you can connect on. And for us, and a lot of people with dementia, it's music and having a laugh and then I can sort of connect with her again. Yeah, it's. It's a different relationship. And what I do, too, is that. And this is with the connected to the long goodbye idea is that because a conversation is very hard now because there's really nothing, you know, she might say to me, what have you been up to? And I could tell her all the things I've been doing, but it wouldn't really compute and it's too detailed and too complicated and, you know, she can't really comprehend a conversation on that level. So what I do is I either take the dog in with me, because it was the dog, I've still got the dog that used to sleep with Mum. And she loves the dog and the dog loves. She's an Italian greyhound and the dog loves her. So straight away, the dog just makes a beeline for the bed and jumps, gets under the covers and Mum's happy. So I take the dog or I take the kids, Ruby or Luca, and we all just sing. We sing nursery rhymes. Yeah, we sing all the odd songs and, yeah, we pretty much spend our visits just. She just sings along to her and holds her, and we have a teddy. And that's what we've been doing instead of. Yeah, I think we learned quite quickly, the whole making conversation. You've got to take props. It can't just. I won't go on my own because there's nothing that you can't interact. You need a prop, which is good. It's a good thing to do. But she can't watch TV anymore. She can't even listen to the radio anymore. She can't work out how to use the remote controls, how to turn things on or off. So, you know, I'm so grateful that the staff there have got a wonderful activities program, fabulous activities program, and people take their dogs in. I mean, when I take Pellegrini in, they all love it. I mean, I do get the same questions all the time. What kind of a dog is she? And don't you feed that dog anything? It's the same questions they ask me all the time, but they love it. How fantastic are Isabel and Kerry? And just a note that in a few weeks we will be dropping a special bonus episode with Kerry. She's been incredibly generous and she's going to come back and have a chat, share an update on how life has been since Emmy died, how they're all coping. If today's conversation brought someone that you love to mind, or if you're walking alongside a parent or a grandparent through dementia or aging, you don't have to do it alone. Violet's guided support programs help you plan for life's later chapters when you're caring for a loved one. We'll pair you with a trained Violet guide who has lived experience, and you can work with that guide for up to six sessions, fully funded through the Carer Gateway. Just visit violet.org au we believe that life's final stages deserve the same. Planning is every other milestone, and that's why we provide free support and tools so that no one faces this unprepared or unsupported. And if you need help making a plan, starting a conversation, or you just need to feel a little less overwhelmed, visit violet.org au to learn more. The National Dementia Helpline is also available 24. 7 on 1800, 100 500, offering free confidential support for anyone impacted by dementia, including carers and families. You can visit dementia.orgau for tools and resources, and if this episode has helped you, please share it with someone who needs to hear it too. We'd love you to follow agehood, leave a review and join us again next week where we sit down and talk with Alex Lolback, someone who is living in the sandwich generation right now, to talk about tips for surviving it and knowing where to go for help. This episode of agehood was brought to you by Wellways Carer Gateway. As a carer, prioritising yourself and your own wellbeing can be hard. That's why Wellways Carer Gateway is making it easier with Walk in Carer Hubs, simple online registration and Wander, a mobile service bringing support to carers in their own communities, help is now more accessible than ever. 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