Residential Care
Understanding Changing Needs
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello. My name is Kevyn. I am a First Nations advocate with Dementia Australia. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So with that in mind, we now pay our respects to the Traditional Owners, to Elders past and present, to those First Nations people joining us here today.
Hamish: This is Hold the Moment, a podcast from Dementia Australia, real stories from people living with dementia and the people who care for them. I'm Hamish Macdonald. I cared for my dad who lived with Parkinson's disease and Lewy body dementia.
Jim: And I'm Jim Rogers, and I'm living with young onset Alzheimer's.
Hamish: So Jim, when you were first diagnosed, I know you said it was really overwhelming, but of all the things about your future, was the possibility of going into care, you know, moving out of home, did that kind of stand out as a really heavy concern?
Jim: Oh, absolutely Ham, like, that is your biggest dread. Like, for me personally, the thought of losing control of living in your own space and making decisions about what you do in your daily life, and suddenly having to accept that you can no longer look after yourself or rely on living at home, in your own place.
Hamish: Did you utter the words to your family, never put me into care?
Jim: No, I wouldn't actually do that on them, because I know eventually it's a possibility that might happen, but I have said it to Ty, probably 50 times, don't you ever put me in a home. He's like, I never would. And then, And then you have an argument, he threatens it? Yeah! Then he's like, yeah, if you don't behave yourself, I will put you in a bloody home, you know.
Hamish: Over time, though, have you adjusted to the possibility that it might be a reality at some point?
Jim: Yep. And it's something that I think about for a while, and then I shove it in a box and put it away, and just try and focus on the here and now and enjoy what I'm trying to do, and try not to focus on that. It's scary when you go into those sort of things.
Hamish: Well, thank you for being honest with your feelings about it, because I think that's part of this whole process, right? Is sharing and letting everyone know that these are very normal things to be thinking about and conversations to be having. And I guess the thing I want to say to you listening is, that this episode isn't always going to be an easy listen. And you know, we did say that at the outset of this series, we're going to really try and wrestle with some of the thorny, knotty issues and topics that are going to come up for anyone living with a dementia diagnosis or caring for someone. So, first, you're going to hear from Louise, whose husband lived with young onset Alzheimer's. Because of his age, he and Louise actually struggled to find the right place for him to live as his care needs changed, and when he finally did find a new home, unfortunately he had some harrowing encounters that might be difficult for you to hear about.
Jim: And we're also talking with Susan, whose dad had a difficult upbringing in his home country of Italy, and he found it really hard to adjust to his new life after moving to Australia. And these experiences seemed to come back to him with a vengeance as his dementia progressed.
Hamish: Like most things on any dementia journey, making decisions about residential care is tricky. If you're at the start of a diagnosis, it might feel impossible to even imagine what that stage might be like, or how you'd make that decision, if you had to.
Jim: Sometimes though, it is necessary and it can come down to safety for the person living with dementia, or also for the carers. And it can bring up some really strong emotions for everyone involved.
Hamish: Feeling ready to talk residential aged care now, Jim?
Jim: As ready as I'll ever be, Ham.
Hamish: Are you being honest about that?
Jim: I think so.
Hamish: Louise is a high-flying media executive. She's the managing editor across several publications at NewsCorp in Australia. You're going to hear a lot about her beloved partner, Craig, or Moose as he's known to his friends, who was diagnosed with younger onset Alzheimer's at the age of just 46.
Jim: She's such a lovely lady. Louise and Craig stayed at home for years after that diagnosis, and life seemed well, pretty normal. But, over time, Craig's condition began to change, and Louise was told that he needed to move into residential care
Hamish: Because Craig was only in his 40s, that process was not straightforward. Most of the systems and pathways just are not built for people aged under 65. Craig died last year, at 56. Louise and Craig's story is all about the practical, emotional and frankly, sometimes heartbreaking realities of moving someone that you love into care and what it takes to help them find a place where they can still belong. Louise, welcome to Hold the Moment.
Louise: Welcome. Thank you for having me. Hamish and Jim.
Jim: Nice to meet you.
Louise: Lovely to meet you both.
Hamish: Can you take us back to the early days of Craig's diagnosis? Like, what was going on at home? What was ordinary daily life like for you?
Louise: So initially, Moose was diagnosed with what they thought was alcohol related dementia, and it wasn't. It was later that we had a definitive diagnosis, but it was Alzheimer's related, and it was actually only probably two months prior to his death where we had some invasive investigations to determine what was at play. There was a concern that there might have been a genetic dementia, which would have had implications, of course. So yeah, so that's why we chose to get that definitive diagnosis.
Hamish: We obviously talk to a lot of people who've been diagnosed and are living with it, and we hear a lot about this kind of idea of just feeling it's all over as soon as there's a diagnosis. But in your situation, I'm curious, because you kind of went on with him living at home for another what five, six years? What was going through your mind? Like, how are you interpreting, digesting all of this? Because you've got a big career as well.
Louise: Yeah, I guess I remember, actually, I haven't really spoken about this, but I remember waking up one morning and thinking, oh my gosh, I'm being so irresponsible. My partner has dementia. We don't even have a neurologist. I'd read an article that my colleague had written in The Australian about Michael Lipman, who had a condition called CTE, and he was similar age to Craig, and similar sort of behavioural changes were coming to play. And I thought, wow, like, I'd never read a story about this before that, and it was so relatable. And within that article, he'd connected with a brilliant neurologist called Rowena Mobbs. And I, long story short, we ended up meeting with Rowena because I thought, well, is it really alcohol related dementia? Could there be something else? Craig did play contact sport for a while in his early years. And Rowena was, I guess, the constant. She was the expert. She was brilliant. And if, without her I think we would have been in a whole different world of pain.
Hamish: So, did you start to have conversations about what happens if and when you can't be at home?
Louise: I didn't. I didn't want to go there. I don't know about you, Hamish, but it was something that I just, you know, there wasn't, that was not something I wanted to even entertain, although I knew that eventually that would need to happen. I just didn't want to make that decision. I didn't want to make that call. And it was on one of our visits to Rowena. We were in her rooms in North Sydney, and you know, Craig was highly agitated that day. He was confused. He wasn't familiar with the surroundings. All of these are, of course, red flags for those living with dementia. And you know, he saw his reflection in the mirror in her rooms. He didn't recognise that mirror. He was terrified. He was swearing at that reflection. He was punching.
Jim: It was scary for you.
Louise: Fist in his hand, and I'd been living this
Jim: Was this quite regular for you, what you were seeing all the time?
Louise: Yeah, I guess I was, and I just needed a grown-up, you know, an adult, you know, with clinical experience in neurology, to really explain that this was not safe. And Rowena didn't feel safe. And we were three minutes into the consultation, and she kind of called it, and she wrote, she wrote down on a piece of paper nursing home. And she did that so that, you know, effectively, Craig wouldn't be able to see what she was sort of writing, not that he would have understood. And that is when my heart sank
Hamish: When you left that appointment and you realised this is something we've got to think about seriously now, were you then able to talk to him about it? Or was it past a point where he could engage? How did you navigate that?
Louise: We never talked about it. And he was so joyful, by the way, the whole way through he was extremely joyful and happy. Everything was new and exciting and wonderful, but there was moments of complete agitation and distress, so I guess, you know, we didn't, we didn't talk about it. I spoke to, I called my mum. She was the first person. I called. His best friend, Rocky, who was incredible. I mean, we were limited in our options, which was the other stressful, scary thing is that there's not many places that will take people under the age of 65. Because, you know, Craig at that point, was very robust and very strong and healthy and fit. And if he were in a home where there were elderly patients with dementia, that would have been an absolute recipe for disaster should he have, you know, inadvertently or accidentally, you know, done something that was inappropriate or anything like that? So,
Hamish: But effectively, because of age, you're excluded from the existing support network or system.
Louise: That's right. That's right, Hamish. I mean, it's really, you've got plenty of options over the age of 65. Not necessarily all perfect, but many more than where we ended up in residential care. But it was, it was incredible, really great. And we had, you know, we were lucky.
Hamish: What was that day like, where you moved him into care.
Louise: It was the worst day. Sorry. I remember, so we ended up going to a place in Warriewood.
Hamish: Sydney's northern suburbs.
Louise: Yes, towards Northern Beaches. We live in Bondi, so it's an hour drive door to door. I packed a small bag, and I said, we're going to visit your friend Rocky today. I didn't want him to think that we were going anywhere else. And he was so excited by that. He thought, this is great. I packed all his favourite t-shirts, his caps, some lollies, and we jumped in the car. And I was really worried, actually, because I thought he may, he was doing, he was jumping out of the car as well as, you know, he would stop at the lights, and he'd just launched out of the car. So it was, it was a little bit, yeah, stressful. But we got there, and we pulled up, and there was, we were greeted by these beautiful carers. There were about five other residents in the home at the time. They'd been there for some time. They all, each of them had dementia, and they were varying ages, but Moose was by far the youngest and the most robust at that point. We had a big lead up to the admission. So, you know, there was multiple, of course, there was multiple forms and paperwork to fill out, but there was lots of discussions and meetings with clinicians and nurses and, you know, I had to fill out a long kind of survey about, what are the things that Moose likes, you know. What are the things, everything from, you know, his favourite food to favourite colours to what's his morning routine like? And that was all integrated into the home. So when he arrived, you know, it was, you know, he was as happy as could be. I was the one, you know, I was not great. Holding it together. But he was as happy as could be. And they, they had said to me, the plan is that you'll bring Craig in. We'll meet him. He'll introduce, meet the other residents, and we'll have lunch, and we'll sit down. And we had, they had set the dining table, and they served Moose's favourite meal, which is sausages and mash and peas and he was, he just thought this is the best thing out and so, yeah. And then they said, you can, you can go now. We're going to take him on an activity. And of course, that was when I, I remember walking out to the car and I was, yeah, a complete mess. And I said to Rocky, aren't you sad? And he said, no, no, he's great. He's fine, you know, he'll be fine. And yeah, he went out on the bus that afternoon. I think they went to the beach, they went for a walk, came home, you know, and life went on.
Jim: How did he settle in, like in those early days when you would go and see him? Did he get distressed when you left? Or was he starting to slide into his routine of being in that residential care?
Louise: Yeah, it's interesting that you asked that Jim, because I thought that he would be really distressed, and he would, you know, he would, if I left, you know, that he wouldn't settle back in. But the care home was so incredible that they were able to distract him, and I would be sent photos every day and updates and, you know, little stories about how he was going and, yeah. And when I'd open the door, rather, they'd open the door, it was obviously a locked home environment. But, you know, he'd always barrel out the door and he'd be very excited. Sometimes he'd just keep running, you know, keep running out the door and straight past me, but yeah, there were times where, you know, he was great. He was really quite settled, thankfully.
Hamish: Did you ever find it hard to visit him or to see him in that environment? Because I guess, for a lot of people, it is quite hard. And I have people in my life that, you know, would say kind of early, look, I find it difficult.
Louise: Yeah.
Hamish: Do you get that?
Louise: I didn't get that. I was the opposite. I'd get butterflies. I was so excited. I'd, you know, wake up on the weekend particularly, and think, you know, I can spend my day with Moose today. I can, we can, at that point, go shopping, take him to the shopping centre and hang out, have lunch, do all these things. But yes, I know some people couldn't cope with that, and I understood that, yeah.
Hamish: Moose was in this place in Warriewood for, I think 12 to 18 months. Initially, you would still go on shopping trips as you mentioned, but it did evolve from there. What happened? What did you have to change?
Louise: Yeah.
Hamish: What was that like?
Louise: Yeah. Well, look, I think it was about 12 months in where there was, he had ingested something at the home, and an ambulance was called and he was taken to the hospital. Taken to the emergency unit there, and subsequently ended up in ICU. By this stage, his behaviours had heightened and he was highly, highly agitated and becoming much more aggressive and that therefore required, quite, you know, a very, very high dose of a particular drug that they have to give. And yeah, he unfortunately had a very extended hospital stay over on the northern beaches. And at that point, we were again lost in the mix of where to next. And there was no, there was no real solution. No one wanted to take him. He couldn't stay in hospital for an extended period. I mean, hospitals aren't great at the best of times. And he, again, he didn't fit that aged care over 65 cohort. So yeah, we were back to square one.
Jim: Limbo land.
Hamish: Sedation. Police. There's not really words we would ever want to use, but particularly in relation to a loved one who's living with dementia. What was that like?
Louise: Well, the second time the police were called, by this stage we'd made our way back to Randwick to another group home. And it was my birthday, which I remember, remember the day very vividly, but I was called to the home because Moose had an uncontrollable episode, and he was, he was lashing out. And they, as part of protocol, they had said, you know, we are really sorry, but we're gonna have to call the paramedics. We need to get him to hospital and there's nothing more we can do at this point. And I said, of course, you know, I'll be there soon. Normally, I'd be able to reason with Moose and say to him, it's okay, you know, everything is going to be okay. But he was not that. He was, he was punching and kicking and thrashing and swearing and so, so out of character. And the lovely paramedic was trying to give him an injection. And Moose wasn't obviously going to, you know, play ball. And so, the police were called, which is again, part of the protocol, and two police officers turned up. They were, there were big guys, oh a lady and a man, and they, they just threw him to the ground. The lovely care home manager had said to me, go and wait in the car. You don't want to be around for this. And I said, no way, I'm not going anywhere. And anyway, unfortunately, yeah, Craig was not happy. He was again, punching the officer and kicking and thrashing. And it was terrible to see. And it was horrific, actually. And eventually they were able to inject him, and then he ended up being chemically and physically restrained and put in a stretcher and taken off back to back to hospital. And it was was only afterwards, when I was sort of talking about it with somebody who was so shocked that this had happened and this had occurred. And I realised, maybe, that the police officers had turned up to, you know, a leafy street with a nice home, and to be confronted by a six foot tall guy who seemed very healthy and fit, who was uncontrollable and swearing, that probably presents as a domestic violence case. Like, you know, he doesn't have dementia. Maybe they didn't understand dementia.
Jim: What was their reaction when you explained to them? Did you explain to them there was dementia involved?
Louise: They were there to do their job, and they, I thanked them. I said, oh, thank you for, but really, what I wanted to say was, you know, he's got dementia. You know, he's not like this. He's actually a big, clumsy teddy bear. Please don't hurt him and kind of fight back moves, you know. I mean, of course, that wasn't going to happen, but I yeah, and I think there has to be a conversation around that about police intervention. Why are police called? Is this really the right arrangement for I mean, I was lucky. I mean, Moose, I can't believe I'm saying this, he survived that, but he could well have gone into cardiac arrest. He could have broken a bone. I mean, we know that this has happened before. With some catastrophic outcomes. So, I just really, I don't want to wake up tomorrow and find a, read a story about someone who's been in a similar situation where their elderly parent or grandparent or loved one has been unfortunately mishandled, I suppose. It's not, is it the right thing for the police? I think that's the question.
Jim: Such a difficult area, isn't it?
Hamish: For anyone that is looking at residential care or trying to think about what is the right setting for their loved one or even for themselves, what advice would you give, like, what did you learn from this about how to approach it? Because it's obviously going to be unique for everyone.
Louise: Yeah, I think, don't go it alone. I mean, organisations like Dementia Australia are a brilliant you know, resource. Surround yourself with the right people, and I am determined to help where I can. Because I had a call the other day from somebody whose husband had recently been diagnosed with frontal temporal dementia, and they had reached, yeah, the fork in the road where they have to go into care, But the care arrangement fell through - where to next. And I think as a country, as a nation, we have a responsibility to lead. We're in the midst of a dementia tsunami. We have to, we've got to do something about it. And I think we've got an ageing population. The statistics, you know, are there. It is the leading cause of death.
Jim: It's only getting bigger, isn't it?
Louise: It's only getting bigger. And, you know, we talk about heart health, we talk about cancer risk, but we don't talk about, why aren't we talking about dementia? Why aren't we talking about brain health, and why aren't we talking about brain health from the age of 40 plus? Because that is when, really, you know, we should be thinking about some of these modifiable behaviours which we know can help prevent or delay dementia. I mean,
Jim: Massively.
Louise: Yeah. I mean, I think Henry Brodaty, wonderful Henry, who's Senior Australian of the Year. He talks about this a lot, about having a slip slop slap for brain health, and we should be doing that.
Hamish: Louise, thank you very much.
Jim: Thanks Lou. Nice to meet you.
Hamish: Louise's story really shows how complicated and emotional moving someone into care can be. But I wonder what that looks like day to day inside a care home?
Jim: Yeah, I can tell you. I'm really curious too. Should we check one out?
Hamish: Let's go.
Anita: So, this is, what do we call this? An air lock door. Come through. Perfect. This is our welcome to our home, our foyer.
Jim: We're at the Lifeview aged care home in Cranbourne, Victoria.
Anita: Follow me. This is where our admin, all the rosters and daily stuff happens. As you can see, it's open so residents can go in and mingle. Our homes are divided into neighbourhoods, so we have multiple things happening at any one time. These three lovely people over here, are here every single day, playing Rummikub, is it? Kahu? What's the game?
Kahu: Rummy-O.
Anita: Rummy-O. So to our left over here, we've got a cafe, working cafe, and on a weekend that's run by staff, so they can come in get coffees, cakes, family come in here and enjoy a cup of tea. We've got a group of residents over here, hello, and they’re making pronoun badges. Are you? Pronoun badges. We've got a market coming up. So we're heading down to one of our neighbourhoods, which is called Banksia. So, in this neighbourhood, Banksia, so we have a dining room where everyone can come and have their meals, if they choose to have their meals there. So, lovely, big, long tables with comfortable chairs. There's a fully functional kitchen in here, which has been designed so residents can wheel themselves up to the bench and do their own cooking if they want to. The idea of this kind of model of living is it's a quieter space and not having 60 people in one kitchen area. Hi, Shirl. This is Shirley. Shirley likes to sit out in the sun, so out here we've got a mini golf course or a putting green. So residents can come out here and putt. We have quite a few of them, and normally this is a really good dog run. So people will bring their dogs out here.
Hamish: Walking through a care home kind of gives you a sense of what daily life can look like. The spaces, the routines, the support, the little ways people can stay connected. But I think also, familiarity, routine is so important, absolutely, when people are going through those kind of seismic neurological changes. However, for all the science that there is, the decision to make the call to move someone is never easy,
Jim: No, for sure. And that's Susan's experience. Her dad had always been gentle and reserved, but as his dementia progressed, he started to become agitated and sometimes even aggressive. So Susan started worrying about the safety of not only her dad, but the welfare of her mum. So she knew she'd got to act. Welcome to the podcast, Susan. I'm so grateful that you've come in.
Susan: Thank you, Jim. You are most welcome.
Jim: Before we start, let's just backtrack a little bit and get to know a bit about your dad. Tell me a little bit about him, so we can know what sort of man he was.
Susan: First and foremost, when you think about a hard working individual, raise the bar a bit. That's the first thing. In terms of his temperament, he was one of those individuals that is happy to sit back and watch. But when he had something to say, by all means, he was happy to share his thoughts. Generally speaking, he just went about his way, went about his job, cared for his family. You knew what his values were, and we knew what was important to him, and he certainly instilled that in us, and I carry them with me today.
Jim: When did you start to sort of first realise that things were changing, and were there certain things that felt out of character to you about him?
Susan: Totally. It was, I'd say, about seven years ago. And Dad was a, had his own business. He was a tradesman, and anything that needed to be done, Dad could do it. And I asked him to do a task at our family, at my home. And ordinarily, Dad would be across it. And it was two bathrooms, and he knew what he had to do. I guided him through it, and I said to him, as we were going up the stairs, the second level of my family home, I saw him just look right, left, right, left, and I said, are you okay? And he goes, I don't know where I am, and I sometimes don't know what I'm doing. And that struck me. And I just looked at him, and we chatted a bit, and then I took him to the first bathroom, and we talked it through. Took him to the second bathroom, we worked through it. That was the end of that.
Jim: But that must have been a real wake up call to you.
Susan: It was.
Jim: That something's not quite right.
Susan: It was a wake up call. And, I now know that my mother would have seen circumstances where he was not himself, but she was not sharing. Perhaps she thought, you know, he's getting older, but it wasn't something that she was going to raise with me. But a week later, I went away, and I knew that whilst I was away, Dad was going to attend to those two jobs in the bathrooms. And I rang my son and said, oh, you know, is Dad there? Has he left? Yeah, yeah, he's gone. He did what he had to do. And I said, great. And when I finally arrived home, I just looked at my bathrooms and went,
Jim: What happened?
Susan: I don't understand. So I rang and said, um, what happened about the bathrooms, fixing them up? And he said, I did. I said, okay, thank you. Thank you. They look great. Thank you. And I don't know what, I don't know what he did whilst he was at my place, but it was obvious.
Jim: So, totally out of character then, because usually he sounds like the ideal dad
that you call who can do anything for you.
Susan: He would spot it. Jim, he would spot it before I did.
Jim: Yeah.
Susan: And I just thought, okay, something's not quite right. But then there was the situation about driving. So then I started to really become preoccupied, if this is very much out of character, and he's forgotten,
Jim: Mmm, what else is happening?
Susan: Exactly. And my first thought was, he was still very able and driving, and on most occasions it was with my mum.
Jim: So that would be a double worry.
Susan: It was. So, I started raising my concerns. They didn't want to hear about it. Definitely didn't want to hear about it. And I said, my concern is that, I'm afraid, obviously an accident, detrimental to yourself, both of you, but others.
Jim: When you're talking about his upbringing,
Susan: Yes,
Jim: Just elaborate a little bit on that, because I believe he had quite a tough upbringing. He went through a lot.
Susan: Oh my gosh, yes. He was born during the war in Italy. He was the youngest of a family who lived in a very small village, very small village in Italy. Farmers, poor, and he was born just before the war, and he grew up during the war. And if things weren't already tough, they certainly became tougher. And his father, God love him, who tended to the farm, was the farmer. He took care of and minded American soldiers. So, German soldiers would present themselves at their home looking for my grandfather.
Jim: Oh, my God.
Susan: Horrifying, horrific. Now my father was very young, and this was during his developmental years, so he would have been, he would have understood the fear of his family members, his older siblings, as well as his mother, his mother trying to protect. So, I don't think he's really understood what possibly went on.
Jim: How old do you think he was at that time?
Susan: Oh, he was four or five years of age.
Jim: Would have being terrified.
Susan: Terrifying, terrifying. And just to have,
Jim: That would have stayed with him.
Susan: German, well, oh yes, it did. Just to have German soldiers coming through the village or making a beeline, arriving and going straight to their house. So there was that. And then Dad, when he was little bit older, he was a bright boy, had an amazing voice, and it was decided that he was going to attend a boys' school, 90 kilometres away from Dad's village. What an opportunity, immersed in the sciences and arts and literature. Oh my gosh, it was hardcore. It was a very difficult environment, and Dad has only mentioned a few things. But we, as we got older, we understood,
Jim: Quite what he'd been through.
Susan: What he had been through, the physical abuse and emotional and what he had witnessed was enough to scar.
Jim: I wonder if you could sort of reference when he did go into residential care later on, which would have been a very tough thing for you and your mum to do, did you find some of this trauma from his previous experiences? Did that connect with the residential care? Did you see some of that?
Susan: Where do I start? So, when it became pertinently obvious that I was becoming very concerned about Mum's welfare, Dad was treating Mum in a way that my father never treated my mother in terms of those things. No, you're not coming upstairs tonight. No, you're not sleeping here tonight. My father would never have said, never said that to my mother.
Jim: So these things would have been really shocking for you to see and hear about.
Susan: Jim, I only heard about that later, not as they were unfolding. And Mum then mentioned that she would, they would be both sitting there watching television, and all it would take would, Dad would be watching television, then all of a sudden he would look at her. And I became aware of this look that Dad developed. That you see a darkness, and you think, uh oh, what's going to happen here?
Jim: Scary.
Susan: Exactly, and he would just question Mum. So Mum would have to explain. And he would be fine with the answers, but just seeing, and I do recall this one,
Jim: Did this happen with you as well? Did you sometimes see, like, that unreasonable side that wasn't his norm?
Susan: I only saw it once. We were having coffee. This is in the residential care. The three of us were having coffee, and Dad said something, where I said something, and Mum said, Oh, that's silly. A throwaway line.
Jim: Yeah.
Susan: And I saw his demeanour change. And this look, and I thought, oh, okay, he's really taken that personally. He's offended. And I thought there's something, something's going on there. But you just step in and you distract.
Jim: Yeah. Just going back to the residential care, I know there was a story about your dad having that significant attachment to the uniform.
Susan: Yes.
Jim: What happened with that?
Susan: So, there were many instances now where I was called to the residential care, or advised that dad is on his way to hospital, because Dad would have a significant, horrific outburst. And it's either, and he is lashing out, lashing and physically lashing out and hurting, and he would just go into people's rooms, or people would or staff would come near him. And one minute he's sitting there calmly, and the next minute he is, he is a beast. And I cannot, I lost track of the number of times I was called. We were often thinking, what are the triggers? So, I was finding that every time I'd return to the residential care home, I would speak to the staff to say, just bear in mind that Dad is very anxious. Dad is very nervous. He's in a, he does not understand why he's here and what is going on. And, you know, this is where he grew up, and he had a very strong accent. You know, this is where he grew up. He came here when he was this age, and he had this period in his life. And then that period, in terms of what I mentioned to you earlier, Jim. So, putting it all together, it makes for a horrific, horrific number of years. And you could see the pennies drop. And so, in terms of this particular incidence, Dad was already having a situation. He wasn't, he wasn't volatile, but he was certainly angry. And it could have been because, Tony it's time to go for a walk, or Tony, it's time to go,
Jim: Just, something didn't suit,
Susan: Something didn't suit, and he lost it. And everyone, most staff, were in scrubs, and the scrubs included these, this design, which for me, it's very calming. I love the colours. The colours, it was predominantly orange.
Jim: Yeah.
Susan: Very calming. Well, I thought so. And two significant staff members who I would talk to often over space of two years, 18 months. As they were approaching, one of them said that dad recognised her. His demeanour changed. He was rather, oh, okay, somebody I know. But then his eyes scanned down, saw the logo of the care home,
Jim: And it triggered him.
Susan: And he became this feral beast. Held on to her, holding on to her. You know what you've done to us? You know what you've done. And this is, this is booming. And at that stage, he was in the secure area, so he cannot get out and we need a code to get in. Everybody there is, there's no words to describe each and every resident. They are, I would love to have sat and chatted with each and every one of them to, tell me your story. Tell me your story.
Jim: Because nobody's adventure with dementia is the same, and that's the thing that keeps coming up, is, you know, how different everybody's story is. And if you look back now in hindsight with both your experience and I'm sure, terribly hard for your mum, what would your advice be to anybody now who's in this position, who's a carer of somebody who's been diagnosed, what would you, how would you summarise what we've been chatting about? What would you say to them as your best piece of advice?
Susan: First and foremost, keep your wits about you, and have a myriad of people as your support group. That's the first thing. A sense of humour would help as well.
Jim: And a large glass of wine.
Susan: Absolutely. For carers, family members, let staff know what their life was like, because you might need to deal with it later down the track, which is what was unfolding with my father. And it changes in a way that you don't know how it's going to change. And every day, because, honestly, every minute that we found with Dad was different, because you just, you're not sure what's going on in there.
Jim: And you just don't know what you're gonna get.
Susan: You have no idea. And you know, for families who have a person in care who's living with dementia, and they're very calm and placid and go about their day, and they may not know what day it is, and they're very pleasant, enjoy that moment. Enjoy those moments,
Jim: And I think that says it all. Sue, thank you so much for sharing that story. It's been so powerful, and thanks for coming in, spending the time with us today,
Susan: And you are most welcome.
Jim: Lovely to meet you.
Susan: Lovely to meet you too. Thank you.
Hamish: That's Susan, who cared for her dad after his dementia diagnosis.
Jim: You also heard from Louise Bryant, who cared for her partner, Craig, who had young onset Alzheimer's.
Hamish: Moose, as they called him
Jim: That's right.
Hamish: Our thanks to Anita and the team at Lifeview aged care home.
Jim: Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios.
Hamish: You can find more episodes and heaps of resources on Dementia Australia's website, dementia.org.au. Make sure you're following Hold the Moment so you don't miss an episode either.
Jim: The show is hosted by me, Jim Rogers.
Hamish: And by me, Hamish Macdonald. The executive producers are Kellie Riordan and Sarah Dabro. The producers are Liam Riordan and Luci McAfee. Production Manager is Ann Chesterman. Sound design by Slade Gibson.
Jim: And a very special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
Hamish: And thanks to you for listening. See you next time.
[END OF RECORDED MATERIAL]
About the episode
Moving into residential care is one of the most emotionally loaded decisions in a dementia journey. Louise knew the day would come for her husband, she just didn't expect how hard it would be to find a facility that would even take him, given his age.
Susan's Italian-born father had rarely spoken of his wartime past, until a uniform in the corridor sent him back decades.
Jim and Hamish sit with both women to explore the hard parts, the unexpected ones, and the small moments of peace that made it worthwhile.
*Please be advised this episode shares moments of distress that may be upsetting for some listeners. If you need support, please contact the National Dementia Helpline on 1800 100 500. Available 24 hours a day, 7 days a week.
Resources and support
Within the Dementia Australia Library the following topic guides are relevant to this episode and may be useful:
National Dementia Helpline
National Dementia Helpline 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.Dementia information and education sessions
A Dementia Support Australia service providing specialist clinical support to help manage changes in behaviour and improve quality of life.Dementia Behaviour Management Advisory Service (DBMAS)
A Dementia Australia service providing specialist clinical support to help manage changes in behaviour and improve quality of life.My Aged Care
An Australian Government service that provides information and referrals to aged care services.NDIS (National Disability Insurance Scheme)
An Australian Government program providing funding and support for eligible people with disability.
Watch the interview
In this video we go one on one with our podcast guests
Transcript
[BEGINNING OF RECORDED MATERIAL]
Susan: Let staff know what their life was like, because you might need to deal with it later down the track, which is what was unfolding with my father. Every minute that we found with dad was different because you just, you're not sure what's going on in their and...
Jim: You just don't know what you're going to get.
Susan: You, you have no idea.
Jim: Welcome to the podcast, Susan. I'm so grateful that you've come in.
Susan: Thank you, Jim, you're most welcome.
Jim: Before we start, let's just backtrack a little bit and get to know a bit about your dad. Tell me a little bit about him so we can know what sort of man he was.
Susan: Mm, first and foremost, when you think about a hardworking individual, raise the bar a bit. That's the first thing. In terms of his temperament, he was one of those individuals that is happy to sit back and watch but when he had something to say, by all means, he was happy to share his thoughts. A comment that my daughter made when she was a very young girl, and she actually wrote it in, it was for school, and she was making, she was doing a little piece about my father and she said that, "He's such a calm, gentle man."
Jim: That's lovely.
Susan: He just went about his way, went about his job, cared for his family. You knew what his values were, and we knew what was important to him and he certainly instilled that in us, and I carried them with me today.
Jim: When did you start to sort of first realise that things were changing and were there certain things that felt out of character to you...
Susan: Oh!
Jim: ... about him?
Susan: Totally, it was, I'd say about seven years ago and, dad was a, had his own business. He was a tradesman, and anything that needed to be done, dad could do it. And, I asked him to do a task at our family, at my home, and ordinarily dad would be across it. And it was two bathrooms and he, and he knew what he had to do. I guided him through it, and I said to him, as we were going up the stairs, the second level of our, my family home. I saw him just look right, left, right, left and I said, "Are you okay?" And he goes, "I don't know where I am, and I sometimes don't know what I'm doing."
Jim: Wow.
Susan: And that struck me and I just looked at him and we chatted a bit and then I took him to the first bathroom and we talked it through, took him to the second bathroom, we worked through it. That was the end of that.
Jim: But that must have been a real wake up call to you.
Susan: It was...
Jim: If something's not quite right here.
Susan: It was a wakeup call and I now know that my mother would've seen circumstances where he was not himself, but she was not sharing. Perhaps she thought, “You know, he's getting older.” but it wasn't something that she was going to raise with me. But a week later, I went away, and I knew that that was, that whilst I was away, dad was going to attend to those two jobs in the bathrooms. And I rang my son and said, "Oh, you know, is dad there? Has he left?" "Yeah, yeah, he's gone, he did what he had to do." And I said, "Great." And when I finally arrived home, I just looked at both bathrooms and went…
Jim: What happened?
Susan: I don't understand? So, I rang and said, "Um, what happened about the, the bathrooms, fixing them up?" And he said, "I did." And I said, "Okay, thank you, thank you, they look great, thank you." And I don't know what unf- I don’t know what he did whilst he was at my place, but it was obvious that...
Jim: So totally out of character then.
Susan: Totally.
Jim: Because he sounds like the ideal dad…
Susan: Totally.
Jim: …that you can call, who can do anything for you.
Susan: He would, he would spot it, Jim, he would spot it before I did.
Jim: Yeah.
Susan: And I just thought, "Okay, something's not quite right." But then there was the situation about driving. So, then I started to really become preoccupied, if this is very much out of character and he's forgotten...
Jim: Mm. What else is happening.
Susan: Exactly, and my first thought was he was still very able and driving and, on most occasions, it was with my mum.
Jim: Mm. So that would be a double worry.
Susan: It was, it was. So, I started raising my concerns. They didn't want to hear about it. Definitely didn't want to hear about it. And I said, my concern is that, I'm afraid, obviously, an accident, uh, detrimental to yourself, both of you.
Jim: When you're talking about his upbringing.
Susan: Yes.
Jim: Just elaborate a little bit on that because I believe he had quite a tough upbringing.
Susan: Oh, he had a tough...
Jim: Didn't he? He went through a lot.
Susan: Oh my gosh, yes. He was born during the war in Italy. He was the youngest of a family, who lived in a very small village, very small village in Italy, farmers, poor. And he was born just before the war and he grew up during the war and if things weren't already tough, they certainly became tougher, and his father, God love him. The, who tended to the farm was the farmer, he took care of and minded American soldiers so German soldiers would present themselves at their home looking for my grandfather.
Jim: Oh, my God.
Susan: Horrifying.
Jim: Mm.
Susan: Horrific. Now, my father was very young and this was during his developmental years, so he would've been, he would've understood the fear of his family members, his older siblings, as well as his mother, his mother trying to protect. So, I don't think he's really understood what possibly went on.
Jim: How old do you think he was at that time?
Susan: Oh, he was four or five years of age.
Jim: That would've been terrifying.
Susan: Terrifying, terrified and just to have German…
Jim: That would've stayed with him.
Susan: Of, of well, oh yes, it did. Just to have German soldiers coming through the village or making a beeline arriving and going straight to their house. So, there was that, and then dad when he was a little bit older, he was a bright boy, had an amazing voice and it was decided that he was going to attend, a boys' school, 90 kilometres away from Dad's village. Oh my gosh! It was hardcore. It was a very difficult environment and Dad has only mentioned a few things, but we, as we got older, we understood.
Jim: Quite what he'd been through.
Susan: What he had been through. The physical abuse and emotional and what he had witnessed, was enough to scar.
Jim: Yeah. I wonder if you could sort of, reference when, when he did go into residential care later on, which would've been a very tough thing for you and your mum to do, did you find some of this trauma from his previous experiences? Did that connect with the residential care? Did you see some of that?
Susan: Oh, where do I start? So, when it became pertinently obvious that I was becoming very concerned about mum's welfare, dad was treating mum in a way that my father never treated my mother. In terms, in terms of...
Jim: What would those things be?
Susan: "No, you are not coming upstairs tonight. No, you are not sleeping here tonight." My father would never have said, never, said that to my mother.
Jim: So, these things would've been really shocking for you to, to see and hear about?
Susan: Jim, I only heard about that later not as they were unfolding. And mum then mentioned that she would, they would be both sitting there watching television and all it would take, would dad would be watching television, then all of a sudden, he would look at her and I became aware of this 'look' that dad developed. That you see a darkness and you think, "Uh oh, what's going to happen here?"
Jim: Scary.
Susan: Exactly, and he would just question mum, so mum would have to explain, and he would be fine with the answers, but just seeing, and I do recall this one...
Jim: Did this happen with you as well? Did you sometimes see like that unreasonable side that wasn't his norm?
Susan: I only saw it once. We were having coffee; this is in the residential care. The three of us were having coffee and dad said something or I said something and mum said, "Oh, that's silly." A throwaway line.
Jim: Yep.
Susan: And I saw his demeanour change, and this look, and I thought, "Oh, okay, he's really taken that personably, he's, possibly offended." And I thought, there's something, something's going on there, but you just step in and you distract.
Jim: Just going back to the residential care, I know there was a story about your dad having that significant attachment to the uniforms.
Susan: Yes.
Jim: What, what happened with that?
Susan: So, there were many instances now where I was called to the residential care or advised that dad is on his way to hospital because dad would have a significant, horrific outburst and it's either, and he is lashing out, lashing...
Jim: Physically as well.
Susan: ... and hurting, physically, lashing out and hurting and he would just go into people's rooms or people would, or staff would come near him and one minute he's sitting there calmly and the next minute he is, he is a beast. And I cannot, I lost track of the number of times I was called. So, I was finding that every time I'd return to the residential care home, I would speak to the staff to say, "Just bear in mind that dad is very anxious, dad is very nervous. He's in a, he does not understand why he's here and what is going on and you know, this is where he grew up." And he had a very strong accent, you know, “This is where he grew up, he came here when he was this age, and he had this period in his life.” And then that period, in terms of what I mentioned to you earlier Jim, so putting it all together, it makes for a horrific, horrific number of years and you could see the pennies drop. And so, in terms of this particular incident, dad was already, having a, a situation. He wasn't, he wasn't volatile, but he was certainly angry and it could have been because "Tony, it's time to go for a walk.” or “Tony, it's time to get dressed."
Jim: Or it's just something didn't suit.
Susan: Something didn't suit, and he lost it. And everyone, most staff were in scrubs and the scrubs included these, uh, this design, which for me, is very calming. I love the colours. The colours, it was predominantly orange.
Jim: Very calming.
Susan: Well, I thought so, and two significant staff members who I would talk to, often, the nurse manager as well as she was, she wasn't the facilities manager, I can't recall, but I would, was often talking with them, over the space of two years, 18 months. As they were approaching, one of them said that dad recognised her, his demeanour changed. He was rather, "Oh, okay, somebody I know." But then his eyes scanned down, saw the logo of the care home…
Jim: And it triggered him.
Susan: And he became this feral beast, held onto her, holding onto her, "You know what you've done to us, you know what you've done.” And this is, this is booming. And at that stage, he was in the secure area so he cannot get out and we need a code to get in. And everybody is, there is, there's no words to describe each and every resident. They are, I would love to have sat and chatted with each and every one of them to say, “Tell me your story; tell me your story."
Jim: Because nobody's adventure with dementia is the same.
Susan: No.
Jim: And that's the thing that keeps coming up is, you know, how different everybody's story is. And if you look back now in hindsight with both your experience, and I'm sure it's terribly hard for your mum.
Susan: Oh!
Jim: What would your advice be to anybody now who's in this position, who's a carer of somebody who's been diagnosed, how would you summarise like what we've been chatting about? What would you say to them as your best piece of advice?
Susan: First and foremost, keep your wits about you and have a myriad of people as your support group. That's, that's the first thing. A sense of humour would help as well.
Jim: And a large glass of wine.
Susan: And… absolutely. For carers, family members, let staff know what their life was like, because you might need to deal with it later down the track, which is what was unfolding with my father. And it changes in a way that you don't know how it's going to change and every day, become, honestly, every minute that we found with dad, it was different because you just, you're not sure what's going on in their and...
Jim: And you just don't know what you're going to get.
Susan: You have no idea and you know, for families who have a person in care who's living with dementia and they're very calm and placid and go about their day, and they may not know what day it is and they're very pleasant. Enjoy that moment, enjoy those moments.
Jim: And I think that, says it all. Thank you so much for sharing that story. It's been so powerful. And thanks for coming in, spend the time with us today.
Susan: And you are most welcome, Jim.
Jim: Lovely to meet you.
Susan: Lovely to meet you too, thank you.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card:
To listen to the full podcast episode visit:
Dementia.org.au/podcast
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End of Title Card]
[END OF RECORDED MATERIAL]
Transcript
[BEGINNING OF RECORDED TRANSCRIPT]
Louise: I just needed a grown-up, you know, an adult with clinical experience in neurology to really explain that this was not safe. We were three minutes into the consultation and she called it, she wrote down on a piece of paper, 'nursing home' and she did that so that effectively Craig wouldn't be able to see what she was sort of writing, not that he would've understood, and that is when my heart sank.
Hamish: Louise, welcome to Hold the Moment.
Louise: Thank you for having me, Hamish and Jim.
Jim: Nice to meet you.
Louise: It's lovely to meet you both.
Hamish: Can you take us back to the early days of Craig's diagnosis? Like what was going on at home? What was ordinary daily life like for you?
Louise: So, initially Moose was diagnosed with what they thought was alcohol related dementia and it wasn't a, it was later that we had a definitive diagnosis that it was Alzheimer's related and it was actually only probably two months prior to his death where we had some invasive investigations is to determine what was at play. There was a concern that there might have been a genetic dementia, which would've had implications of course, so that's why we chose to get that definitive diagnosis.
Hamish: We obviously talk to a lot of people who've been diagnosed and are living with it, and we hear a lot about this kind of idea of just feeling it's all over as soon as there's a diagnosis. But, in your situation, I'm curious, because you kind of went on with him living at home for another, what, five, six years? What was going through your mind? Like, how are you interpreting, digesting all of this because you've got a big career as well.
Louise: Yeah, I guess I remember, actually, I haven't really spoken about this, but I remember waking up one morning and thinking, "Oh my gosh, I'm being so irresponsible.” My partner has dementia; we don't even have a neurologist, and I'd read an article that my colleague had written in 'The Australian' about Michael Lipman, who had a condition called CTE, and he was similar age to Craig, and similar sort of behavioural changes were coming to play. And I thought, wow, like I'd never read a story about this before that and it was so relatable and within that article he'd connected with a brilliant neurologist called Rowena Mobbs, and I… long story short, we ended up meeting with Rowena because I thought, well, “Is it really alcohol related dementia? Could there be something else?” Craig did play contact sport for a while in his early years and Rowena was, I guess the, constant, she was the expert. She, she was brilliant and if, without her, I think we would've been in a whole different world of pain.
Hamish: So, did you start to have conversations about what happens if and when you can't be at home?
Louise: I didn't, I didn't want to go there. I don't know about you Hamish, but that was not something I wanted to even entertain, although I knew that eventually that would need to happen, I just didn't want to make that decision. I didn't want to make that call and it was on one of our visits to Rowena; we were in her rooms in North Sydney and, you know, Craig was highly agitated that day. He, he was confused. He wasn't familiar with the surroundings. All of these are, of course, red flags for those living with dementia and you know, he saw his reflection in the mirror in her rooms. He didn't recognise that mirror. He was terrified. He was swearing at that reflection, he was punching.
Jim: That was scary for you.
Louise: His fist in his hand and I'd been living...
Jim: What this quite regular for you?
Louise: Yeah.
Jim: What you were seeing all the time?
Louise: Yeah, I guess I was, and I just needed a grown-up, you know, an adult with clinical experience in neurology to really explain that this was not safe and Rowena didn't feel safe. And we were three minutes into the consultation, and she kind of called it and she wrote, she wrote down on a piece of paper 'nursing home' and she did that so that, you know, effectively Craig wouldn't be able to see what she was sort of writing, not that he would've understood, and that is when my heart sank.
Hamish: When you left that appointment and you realised this is something we've got to think about seriously now, were you then able to talk to him about it? Or was it past a point where he could engage? How did you navigate that?
Louise: We never talked about it and I, he was so joyful by the way, the whole way through. He was extremely joyful and happy. Everything was new and exciting and wonderful, but there were moments of complete agitation and distress. So, I guess, you know, we didn't, we didn't talk about it. I spoke to, I called my mum. She was the first person I called. His best friend, Rocky, who was incredible. We were limited in our options, which was the other stressful, scary thing is that there's not many places that would take people under the age of 65. Because, you know, Craig at that point was very robust and very strong and healthy and fit and if he were in a home where there were elderly patients with dementia, that would've been an absolute recipe for disaster should he have, you know, inadvertently or accidentally, you know, done something that was inappropriate or, or anything like that, so...
Hamish: But effectively because of age, you're excluded from the existing support network or system.
Louise: That's right, that's right, Hamish. I mean, it's really, you've got plenty of options over the age of 65, not necessarily all perfect, but many more than where we ended up in residential care but it was, it was incredible, really great and we had, you know, a, we were lucky.
Hamish: What was that day like where you moved him into care?
Louise: It was the worst day. Sorry, I remember. So, we ended up live, going to a place in Warriewood.
Hamish: So, Sydney's northern suburbs.
Louise: Yes, out towards northern beaches. We live in Bondi, so it's an hour drive door-to-door. I packed a small bag, and I said “We're going to visit your friend Rocky today.” I didn't want him to think that we were going anywhere else and he was so excited by that. He thought, “This is great.” I packed all his favourite t-shirts, his caps, some lollies and we jumped in the car and I was really worried actually because I thought he may, he was doing, he was jumping out of the car as well as, you know, we’d be stopped at the lights and he just launch out of the car. So it was, it was a little bit, yeah, stressful, but we got there and we pulled up and there was, we were greeted by these beautiful carers. There were about five other residents in the home at the time. They'd been there for some time. They all, all each of them had dementia and they were varying ages, but Moose was by far the youngest and the most robust at that point. We had a big lead up to the admission, so, you know, there was multiple, of course, there was multiple forms and paperwork to fill out but there were lots of discussions and meetings with clinicians and nurses and you know, I had to fill out a long kind of survey about what are the things that Moose likes. You know, what are the things, everything from, you know, his favourite food to favourite colours, to what's his morning routine like and that was all integrated into the home. So, when he arrived, you know, it was, you know, he was as happy as could be. I was the one, you know, I was, I was not great.
Jim: Holding it together.
Louise: But he was, he was as happy as could be and they had said to me, “The plan is that you, you'll bring Craig in, we'll meet him, he'll introduce, he'll meet the other residents and we'll have lunch and we'll sit down.” And we had a, they had set the dining table, and they served Moose's favourite meal, which is sausages and mash and peas and he was, he just thought this was the best thing out, and so, yeah. And then, and then they said, "You can, you can go now, we're going to take him on an activity." And of course, that was when I remember walking out to the car and I was, yeah, a complete mess and I said to Rocky, "Aren't you sad?" And he said, "No, no, he's great, he's fine, you know, he'll be fine." And yeah, he went out on the bus that afternoon. I think they went to the beach. They went for a walk, came home.
Jim: How did he settle in? Like, in those early days when you would go and see him? Did he get distressed when you left? Or was he starting to slide into his routine of being in that residential care?
Louise: Yeah, it's interesting that you asked that Jim because I thought that he would be really distressed and he would, you know, he would, if I left, he would, you know, that would be, he wouldn't settle back in. But the care home was so incredible that they were able to distract him and that I would be sent photos every day and updates and, you know, little stories about how he was going and, and yeah. And when I'd, I'd open the door, rather they'd open the door; it was obviously a locked home environment, but, you know, he'd always barrel out the door and we'd be very excited. Sometimes he'd just keep running, you know, keep running out the door and everyone straight past me but yeah, there were times where, you know, it, he was great. He was really quite settled, thankfully.
Hamish: Did you ever find it hard to visit him or to see him in that environment? Because I guess for a lot of people, it is quite hard and I have people in my life that, you know, would say quite overtly, "Look, I find it difficult."
Louise: Yeah.
Hamish: Do you get that?
Louise: I didn't get that; I was the opposite. I'd get butterflies, I was so excited. I'd, you know, wake up on the weekend particularly, and think I, you know, “I can spend my day with Moose today, I can, we can… At that point go shopping, to the, take to the shopping centre and hang out, have lunch, do all these things.” But yes, I know some people couldn't cope with that and I understood that.
Hamish: Moose was in this place in Warriewood for I think 12 - 18 months. Initially, you would still go on shopping trips as you mentioned, but it did evolve from there. What happened? What did you have to change? What was that like?
Louise: Yeah, well look, I, I think it was about 12 months in where there was, he had ingested something at the home and an ambulance was called and he was taken to the hospital, taken to the emergency unit there, and subsequently ended up in ICU. By the stage, he, his behaviours had heightened and he was highly, highly agitated and becoming much more aggressive and therefore required quiet, you know, a very, very high dose of a particular drug that they have to give. And yeah, he unfortunately had a very extended hospital stay over on the northern beaches and at that point we were, again, lost in the mix of ‘where to next?’ And there was no, there was no real solution. No one wanted to take him. He couldn't stay in hospital for an extended period. I mean, hospitals aren't great at the best of times and he, again, he didn't fit that aged care over 65 cohort. So yeah, we were back to square one.
Jim: Limbo land.
Hamish: Sedation, police, there's not really words we would ever want to use, but particularly in relation to loved one who's living with dementia, what was that like?
Louise: Well, the second time the police were called, by this stage, we'd made our way back to Randwick to another group home and it was my birthday, which, so I remember, remember the day very vividly. I was called to the home because Moose had an uncontrollable episode and he was, he was lashing out and they, as part of protocol, they had said, "You know, we, we are really sorry, but we're going to have to call the paramedics. We need to get him to hospital and we, there's nothing more we can do at this point." And I said, "Of course, you know, I'll be there soon." Normally I'd be able to reason with Moose and say to him, "Okay, you know, everything's going to be okay.” But he was not that, he was, he was punching and kicking and thrashing and swearing and so, so out of character and the lovely paramedic was trying to give him an injection and Moose wasn't obviously going to, you know, play, play ball. And so, the police were called, which is again, part of the protocol and two police officers turned up. They were, they were big guys, or like a lady and a man, and they just threw him to the ground. The lovely care home manager had said to me, "Go and wait in the car, you don't want to be around for this." And I said, "No way, I'm not going anywhere." And anyway, unfortunately, yeah, Craig was not happy. He was again, punching the officer and kicking and thrashing and it was terrible to see, and it was horrific, actually. And, eventually they were able to inject him and then he ended up being chemically and physically restrained and put in a stretcher and taken off back to, back to hospital. And it was, it was only afterwards when I was sort of talking about it with somebody who was so shocked that this had happened and this had occurred and I realised maybe that the police officers had turned up to a, you know, a leafy street with a nice home and to be confronted by a six foot tall guy who seemed very healthy and fit, who was uncontrollable and swearing, that probably presents as a domestic violence case. Like they don't, you know, he doesn't have dementia, maybe that didn't understand dementia.
Jim: What was their reaction when you explained to them? Did you explain to them there was dementia involved?
Louise: They were there to do their job and I thanked them. I said, "Oh, thank you for"... but really what I wanted to say was, "He's got dementia, you know, he's not like this, he's actually a big clumsy teddy bear, please don't hurt him." And kind of fight back Moose. Like, you know, I mean, of course, that wasn't going to happen, but I, yeah. And I think there has to be a conversation around that, about police intervention. Why are police called? Is this really the right arrangement for, I mean, I was lucky. I mean, Moose, I can't believe I'm saying this, he survived that, but he could well have gone into cardiac arrest. He could have broken a bone, I mean we know that this has happened before with some catastrophic outcome so I just really, I don't want to wake up tomorrow and find a, read a story about someone who's been in a similar situation where their elderly parent or grandparent or loved one has been, unfortunately, mishandled. I suppose be, and it's not, is it the, is it the right thing for the police? I think that's the question.
Jim: It's such a difficult area, isn't it?
Hamish: For anyone that is looking at residential care or trying to think about what is the right setting for their loved one, or even for themselves, what advice would you give? Like what did you learn from this about how to approach it? Because it's obviously going to be unique for everyone.
Louise: I think don't go it alone. I mean, organisations like Dementia Australia are a brilliant, you know, resource. Surround yourself with the right people and I am determined to help where I can because I had a call the other day from somebody whose husband had recently been diagnosed with frontal temporal dementia and they had reached the fork in the road where they have to go into care, but the care arrangement fell through, ‘where to next?’ And I think as a country, as a nation, we have a responsibility to lead. We're in the midst of a dementia tsunami. We have to, we've got to do something about it. We've got an ageing population. The statistics, you know, are there, it is the leading cause of death.
Jim: It's only getting bigger, isn't it?
Louise: It's only getting bigger and you know, we talk about heart health, we talk about cancer risk, but we don't talk about... Why aren't we talking about dementia? And why aren't we talking about brain health? And why aren't we talking about brain health from the age of 40 plus? Because that is when, really, you know, we should be thinking about some of these modifiable behaviours, which we know can help prevent or delay dementia, I mean...
Jim: Massively.
Louise: Yeah. Henry Brodarty, wonderful Henry, who's Senior Australian of the Year, he talks about this a lot about having a 'slip-slop-slap' for brain health and we should be doing that. I mean, let's do it.
Louise: It makes so much sense, doesn't it?
Hamish: Louise, thank you very much.
Louise: Thank you.
Jim: Thanks, Louise, nice to meet you.
Louise: Nice to meet you.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
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[END OF RECORDED MATERIAL]
Ask Us Anything
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands in which we are meeting are many countries filled with languages similar and different. For more than 50,000 years, we have come together to trade knowledge, to learn, and to teach. Today, we join to keep up that tradition. So, with that in mind, we now pay our respects to the Traditional Owners, to Elders past and present, to those First Nations people joining us here today. Welcome and thank you.
Jim: Moving into residential care is never an easy decision, but it's about finding support, safety, and dignity along the way. Hi, I'm Jim Rogers, and this is Hold the Moment, Dementia Australia's award-winning podcast, which gives you real stories, insights, and support when dealing with dementia. On our Ask Me Anything episode, you send us the questions that you'd like answered about living well with dementia. Here's one of our listeners, Anthony, and he's got a question about his dad, who's living in residential care.
Anthony: I'm Anthony from Sydney. My dad is living with dementia in residential care. He gets really distressed when he's asked to shower. Do you have any practical tips or advice?
Jim: To help unpack it, here's Jane Smith, Family Engagement Counsellor at Dementia Australia.
Jane: Oh, thank you Anthony. It's a really good question to raise. It's a very, very common issue. It may be that the dementia is causing your father to experience the shower is unpleasant in some way and that can be around changes of perception to heat and cold, a feeling of something on the skin, which he can't really interpret. The noise of course, of a shower, and all those really complicated steps of actually taking a shower. If we actually think about what that takes. That could be confusing and overwhelming, and he might therefore not be able to effectively communicate what he's experiencing. And I guess what we're seeing is that he is communicating. He's saying, "I don't want this." So that's quite a good message to listen to. But I do realise that's difficult then for you to experience. I do want you to remember that you're the expert in your dad. Who is he? And what does he like? And what's important to him? And how did he organise his life before dementia came along? I suppose it's those things around, like considering what time of day is it that you think dad might be encouraged to go into the shower? And it could be, in his work world, he always showered at night. And he's being asked to at six o'clock in the morning. It just doesn't, you know, compute for him. Is he a very private man? And is the gender of the staff an issue here as well? Is it that he used to use the bath once a week? And remembering that long-term memory is going to be very much to the fore and for some people they might not have had facilities, they might have been washing, you know, from a bucket. It's these things to really sort of think about. It could be that your dad actually isn't particularly sure what this is, even. You also might say, and this is the hard thing, I think for many people listening, probably thinking, but you know, my dad or mum were fastidious. They would never have gone out of the house without, you know, X, Y, Z, and you can't bear what you're witnessing as these hygiene standards change. And so you know, obviously hygiene is important. It might be a 'top and tail' is okay, changing our own expectations and grieving that your dad is perhaps not presenting himself as you are used to. The other very important part here as well, and I know so it's kind of, again, so adds to your workload is, is what's happening in the residential aged care facility. You know, what kind of support do the staff need? One of those things might be understanding dad as a person, as we've just discussed. Often, there is somebody on staff who might have more of a relationship with dad who is a bit more successful. Maybe they've worked out what sorts of things work for dad. Can the staff member make sure they're communicating with these other staff members about what's working and what doesn't? And the other thing then, again, is perhaps once you've worked out, you know, they understand who your dad is, is encouraging staff to focus on engaging with your dad before he gets possibly rushed into a shower environment. Talking to him about other things. His interest in hobbies, maybe there's some nice music on, making sure of course that the room is warm and there's the towel he likes. Providing him with the context for the shower. So, it could be, "Anthony's coming to pick you up for lunch," and so perhaps it makes more sort of sense for dad to get into the shower, that sort of context. For the staff at the aged care facility, we can also recommend two of Dementia Australia's apps. One is called 'Ask Annie.' They can find that on the professional section of the website. And the other one is 'Talk with Ted.' And they are two interactive applications that can really support staff in these difficult situations to skill them up in their dementia knowledge. Anyway, thank you Anthony. I do hope that some of that has been helpful to you.
Jim: Next up, we've got a question from Robin.
Robin: Hi, I'm Robin and I'm from Victoria. My husband was diagnosed with younger onset Alzheimer's disease seven years ago at the age of 51. I plan to have him home with me as long as I can and hopefully until the very end. But if I can't, there seems to be very limited options in the way of full-time care for him. Aged care is not keen to take someone under the age of 65, with younger onset dementia, and I've heard that there are limited accommodation options through the NDIS for supported independent living. So what are the options for my husband in the future as far as long-term care?
Jane: Well, thank you Robin. It's a really huge and important question. It's great that you have raised it. I guess I also want to acknowledge it can be incredibly stressful for many reasons. Wondering, yeah, when is the right time? Managing the feelings that you experience as you come to terms with feeling like you can no longer care for him at home or in the way that you are now. These practical aspects and the interface with these large systems like, NDIS and My Aged Care, and you know, that can be overwhelming when you're already feeling probably that you have an awful lot on your plate. I guess the kind of first response is that, you know, you're right. We don't want to see younger people in aged care settings and we would like to see the person living with dementia, the younger person living with dementia, in appropriate person-centered care. You like supported independent living, perhaps earlier on in the dementia journey or when there are higher care needs for specialist disability accommodation. And there are possibilities, and we have seen this of people being in 24 hour care funded by NDIS at home. With the right support and planning, this might be an option for you, but I'm not going to pretend it's easy. And one of the reasons for that is, is that access to appropriate care can vary greatly depending on many factors; geography perhaps being one of them where you are located in Australia. So, really I think Robin, it's exploring possibilities early on. So right now, it's sounding like it's in your head. So, it is, is, "Who can I go to to talk this through?" Now, I'm going to assume that you are linked in with the NDIS already, given that how long your husband has been diagnosed, and that you very likely have a support coordinator. Now that person is the person that you'd really be wanting to talk to now. I know you've got a lot on your plate already right now, but I'd encourage early planning, talk to your NDIS coordinator to discuss your thoughts and how you can work together on increased care options and funding. This is a team effort. You cannot do it on your own. It might also mean right now you need some more help. So, I think it's kind of thinking that thing through as well. Get as much information as possible. Knowledge is power, list your questions and concerns. Perhaps get a book that you kind of keep going to. Write down the phone calls and the dates that you had them. Dementia Australia can, of course, work with people to understand this system. We have an excellent younger onset dementia guide, which is downloadable on our website and many other resources on the website. Of course, with our services at Dementia Australia are amazing dementia support specialists. They are people there who understand the system and understand these very particular practical needs. You can consult with them via the Helpline, you get referred and consult with them to answer any questions in more detail and they can support you through this process. So, thank you Robin. It's really good that you've asked this question and I hope that's gone some way for you towards being something that's helpful.
Jim: If you've got a question, you can also call the free National Dementia Helpline on 1800 100 500. Dementia Australia's trained advisors are available 24 hours a day, every day of the year. And look out for more episodes of Hold the Moment. This episode was produced by Deadset Studios for Dementia Australia.
[END OF RECORDED MATERIAL]
You asked, we answered
This episode answers questions about how to navigate daily routines when your loved one stops wanting to shower, and residential care options for people with young onset dementia. Louise, a National Dementia Helpline Advisor at Dementia Australia, offers practical and compassionate strategies.
About the podcast
Hold the Moment is an award-winning podcast from Dementia Australia full of real stories about life after a dementia diagnosis.
Season three dives into the topics that can be hardest to talk about, with compassion, practicality and a unique sense of hope.
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