The Dementia Podcast

Understanding Behaviour: Gus’ Story

January 20, 2021 Professor Colm Cunningham
The Dementia Podcast
Understanding Behaviour: Gus’ Story
Chapters
The Dementia Podcast
Understanding Behaviour: Gus’ Story
Jan 20, 2021
Professor Colm Cunningham

* May contain sensitive material

Join Colm as he talks to Gina about the challenging journey of supporting her father Gus through a dementia diagnosis and the subsequent unpredictable search for suitable care. This episode dismantles the stigma toward behaviours in dementia and focuses on the importance of person-centred care. Gina and Gus’ story is a testament to the bonds of family, demonstrating how a child’s love and determination for their parent’s safety and well-being changed both their lives.

“I think what’s important is that your family member, loved one, the person living with dementia feels safe and secure and anywhere that opened a door that offered that would be wonderful.”

This episode is sponsored by the HammondCare Foundation.

Find more information on the Specialist Dementia Care Program (SDPC) here

For further support to those who have a loved one in a care home there is this resource .

Show Notes Transcript

* May contain sensitive material

Join Colm as he talks to Gina about the challenging journey of supporting her father Gus through a dementia diagnosis and the subsequent unpredictable search for suitable care. This episode dismantles the stigma toward behaviours in dementia and focuses on the importance of person-centred care. Gina and Gus’ story is a testament to the bonds of family, demonstrating how a child’s love and determination for their parent’s safety and well-being changed both their lives.

“I think what’s important is that your family member, loved one, the person living with dementia feels safe and secure and anywhere that opened a door that offered that would be wonderful.”

This episode is sponsored by the HammondCare Foundation.

Find more information on the Specialist Dementia Care Program (SDPC) here

For further support to those who have a loved one in a care home there is this resource .

Colm:
Hello, welcome to the dementia podcast. I'm your host, Colm Cunningham. You're listening to an episode that is focusing on understanding the complex issue of when behaviors change for someone with dementia. We will in future episodes be considering many of the other triggers and causes of change, many of which can be addressed by other treatments. But today we're focusing on the progressive nature of dementia, and when behavior and psychological symptoms occur. Now, this particular episode may contain some content that is distressing. So you might want to think about listening to it with a friend or colleague. Over the last five years here in Australia, there's been a number of Australian government initiatives seeking to support people who have behaviors and psychological symptoms and times who are in need of specialist support. Back in 2015, the announcement by the Australian Government of one of these programs, the specialist Dementia Care Program, was reported in the Australian Financial Review newspaper. It described people who needed this program as mad, bad, and dangerous to no be reassured there was an international outcry. And I'm certainly not trying to rake up the distress of the time. But it is ironic that at the very same time in 2015, Gus, a man living with dementia and his daughter, Gina, we're in need of the very support this program in to address now while the actual program did not launch until 2019. I'm pleased to tell you that here in Sydney, one of the forerunners of that program, Hammond cares Linden unit did become part of their story. Gina, thank you so much for being my guest today. It's a privilege to have you on the dementia podcast.
Gina:
Hi, Colm. How are you?
Colm:
I'm good, Gina, and great to have you as our guest. In 2015, the Australian Financial Review commented on new funding that was going to be happening in Australia that were specialist Dementia Care yet for people with more severe behaviors related to their dementia. And then there was the term mad, bad and dangerous to know. Now your dad Gus, I guess what, at the same time was starting to have some of the challenges he was facing with dementia? Mad bad and dangerous to know. Is that how we do describe Gus?
Gina:
No. But in defense of the author, I did read that article only recently. So I wasn't aware of it until recently. And the first thing I did ask was, when was it written? Because I think that was really relevant to the times that my dad was being diagnosed and going through the system in terms of diagnosis and treatment. But one of the things I was trying to be objective about was that I imagined the author being someone looking through a window, and looking at things that were happening behind, and he tapped someone on the shoulder and says, What's going on, and then someone says, oh, they've got dementia. And that's how he put the two together. Because he didn't understand anything about it. And in all honesty, in that time, I didn't know either. So I didn't know that it was all related. But the title of the article probably wasn't the worst thing for me. There were two words within the depth of the article that surprised me more, but I still resonated with and that was the first one was feral. He described the behavior as feral. And when I think of feral, I think of a wild animal that may be trying to defend themselves, that's in a complete state of confusion because they feel so threatened. And the other one was inmate, he referred to residents and people would mentioned inmates. And I thought, oh, typical, you know, as a consequence of certain behaviors, you know, they were pretty much secluded from everybody as a means of a consequence of, of how they were acting. So I thought completely inappropriate terms. You know, language is everything. But that is why there's a really strong misunderstood stigma about behavior and dementia.
Colm:
Gina, you say, you mentioned looking through the window. Yeah. And I guess therefore, it's really important that we look through the window of who your dad is. So can you tell me a bit about his childhood who he is?
Gina:
So my dad grew up in a village in Italy, near Rome, that according to legacy says that had to temperatures are the very, very cold or very, very hot, and that had to work in those conditions. Really, so it was a hard physical kind of work that he did on a farm. And those extreme temperatures. Even as he got older, he was the first to come out to Australia of the family. And then as all Italians do, they bring the rest of the family out.
Colm:
And you said that he ran a fruit veg shop.
Gina:
He did. So he had it was a milk bar, if you will guess his milk bar. But he had lollies milkshake machines. On one side, the $1 lollies that you put in the little white bags. But then over the other side was all the good stuff for the greengrocer, fruit, vegetables, bread, milk, all of those things. So people came in for all sorts of requests. But dad had them all. He always used to buy things in threes. And I was because he always wanted to make sure he had enough stock for the shop. But even when he went shopping later on in life, or configure out why he was always buying things in threes, but it makes sense because he had a habit that he was, you know, following for many years.
Colm:
And then there was a very pivotal few days. What led up to that.
Gina:
One morning, I get a phone call. Because my mom had had to leave the house, my dad had awoken and not recognize my mom. And he was so anxious about it that he tried to remove her from the house. But she just left and went to the neighbors. And obviously we didn't understand what was going on to the police were called, they quickly realized what had happened. And we just called an ambulance. So we went to a hospital where I thought we'd be able to fix things,you know.
Colm:
And you said when you got to the hospital, your hope as a family was that they were going to fix things. How did that go?
Gina:
Not exactly the way that we planned. Like I said, we had no idea about dementia, and exactly what it entailed. And that there was no cure, and that it just deteriorates. But in the hospital, it was like dad objected to all the orders that originally he was quite compliant with. He just wanted to go home. The basis of it was that he wanted to go home. And then he wanted to go to work. So he there was a state of confusion at a certain point. But originally he just wanted to go home. And because of the circumstances of his admission, they didn't let him go home. And they had to forcefully keep him there. And by force, it meant he had to be held down and physically restrained for a period of time medicated until he went to sleep. And then in the coming days, he still wanted to go home. And they he was strong because of all that physical work that he did growing up. And he worked till quite late in life. So he was actually put in a seclusion room, because the emergency department really couldn't probably manage anybody in the emergency department is too volatile. And they had to put him in a seclusion room so that he was safe, and that all the other patients were safe. But it lasted for three days.
Colm:
So three days, or three days in the emergency room, not on the ward?
Gina:
three days in a seclusion room, right. So in the emergency room, because there was no room in the ward. They wanted to send him to the psyche, psycho geriatric Ward, and there was no room. So they had to leave him there on a mattress on the floor with a security guard at the door.
Colm:
So he's feeling like he's locked in. There's somebody stopping him from going anywhere. Were you able to be anywhere near him at that time?
Gina:
So I was always there, front and center, whether they liked it or not. But I think they wanted us involved in all honesty, The hospital just did the best they could. And I had to be front and center because he was speaking but he would revert back to Italian sometimes at the time. He was able to communicate maybe what he was feeling if he was feeling hot, cold, what have you but he just wanted to go home. So yes, I was with him. But I was standing at the door. Next a security guard. I could go in the room if I wanted to. And I would sit on the chair and he would just be on the mattress but you don't you can't stay in a room like that. I mean, we all have probably with COVID now, but he couldn't stay in a room like that, particularly when you're confused and agitated. And you've got that inner feeling that you just want to jump up and start walking home anyway. Yeah. So it was I think it was difficult.
Colm:
So three days in a secluded area led to six weeks on a mental health ward. Yes, I've got this picture forming from three days in a secluded area to then six weekend on a ward. And I'm conscious at week six. There's a particular story you shared with me that seems to be a pivotal point in what you did next. I believe you're going to call a two o'clock in the morning. What was that about?
Gina:
So it wasn't quite two o'clock, but that is the timing. deadhead. So he was going to work. But as soon as I think you know, obviously he was out of time and place but he went to go to work. And when we were younger, he used to wake us up really early in the morning say Come on, we have to go to work and he did that with the other patients in the hospital, which was alarming for the staff, and I completely understand that he tried to leave and was stopped. And they phoned probably about 11 o'clock at night or so and said, Look, he's had a lot of medication, but he's threatening everybody. And, you know, we need to give him some more medication. But if we give him another dose, it may kill him, Do you consent? And I was on the other end of the phone thinking, What are you talking about? Surely there's another way. And in times past, I would be very emotional about this. And I think there's also a process then of anger, and then all those other things. And I've also come to now acceptance to say, well, the decision I made was, we did give him that medication. But we really had no option. And it was forced choices at the time, due to the circumstances, and there was nothing else, no other option. At the time, we tried to redirect and say that, you know, just tell him the markets are closed, or he can't go to work. It's closed that day, it's Sunday, and try and appease him. But it obviously didn't work. And we just had to medicate, it just had to stop.
Colm:
Now, the next part of the story is about you going and being turned away from the end, as I describe it, which is that you then started to think he shouldn't be staying in this hospital. This is not the right environment for him, we've got to find in the right environment. But you did get turned away quite a bit, do you want to tell me about that,
Gina:
I would just cold call homes in the area to ask if there had any availability. And I think there was two factors one, no beds. And second, there was a waiting list. And second, it was that he wasn't the right mix, because of other residents. And it's a very important factor, I understand that the environment wasn't able to accommodate him and separate him from other residents that might be more vulnerable. So I just kept calling around until I made a call to a hospital near us at the time. And it was at Greenwich Hospital. And they referred me to somebody who then said, hang on a minute, put me on hold and gave me some details of very important person who is now important person in our lives, who was able to guide us and assist us in trying to find placement for my dad from hospital. But that road was still quite long. But without this person's help, I don't know that we would be in the place that we are now.
Colm:
Gina how many places had you actually rang? rang before you ran Greenwich Hospital?
Gina:
Probably about four pages full, I would write them all down and just try not to repeat calling them. But time visited a few. And you know, some are just I'm really sorry, D We can't help you. People were lovely. It wasn't even in the hospital. People were lovely people were doing their best. It was just environment circumstance. And I guess availability, at the time, so many factors. But I just kept trying. But it was an endless list. It was exhaustive. Every time if I was away from the hospital, I was on the phone.
Colm:
Gina, the place that your dad ended up going to live was Hammond carries Linden unit, which is a specialist Dementia Care Unit. With people living in the How long was he in the hospital before he actually got to come to Linden?
Gina:
about eight weeks?
Colm:
And what was the process? So you've talked about this man, we're talking about John, tell me what was that first telephone call with John like?
Gina:
Well, it was quite interesting, because I didn't actually know who John was because a lot of people would direct just to companies or services that would provide advice as opposed to a place to stay. So I really didn't know where I was going. And I just found john, he answered within the second ring. And he always does. And so within the second ring, and I explained to him very quickly, because I had a script that I had said to everybody just to see an introductory script to explain what was going on and what have you but he answered the phone and I just spilled it out to him. And his response, which is quite funny. Today was settle down, stop the hysterics. And I say this all the time. It wasn't it's funny in hindsight, but at the time, I was taken aback and I thought, Okay, I will. I'll stop. And he was very calm and measured and so knowledgeable that it really well. It's the first time I ever realized that other people existed like this. I had no idea everyone else that I had spoken to was like, Oh, that must be really difficult. Oh, and john. Oh, this is a normal day in my life. Settle down. Right What's going on? Just tell me and it was just cut out all the emotion and tell me what's going on. Let me see. You know what we can do? So he was really instrumental in moving things along, not a salesman by any stretch told me mark He told me other places that you could possibly go to. And I still didn't really know what we're talking about Linden at the time, because we were just talking about what was going on and things I needed to even tell the hospital and how I could help my dad in the hospital, because they were waiting for him to get better. And john said, this is the best is going to ever present for them. He's not going to get better. This is not going to be fixed, and not in the short term.
Colm:
Gina, can I ask you a little bit more about your say that when you finally got through to john, there was this outpouring? You had this script, you'd been through many, many times with different care homes. And clearly, he's saying to you, hold on, can we just no cut what you're trying to say? But clearly, you've been pushed to a level where you had to get this. All right. So what was that script? What were you having to say to people when you rang them up?
Gina:
I was just honest, I didn't edit anything. I just said, Look, this is what's happened. My dad has dementia, and he is in hospital. And they, I have to give him a whole process of what he was doing, how he was behaving, he wanted to go home, he wanted to go out into the garden. And currently because he was so strong, and not complying with the request, so he wasn't doing what he was told. And so as a consequence, he would either go into seclusion or be medicated, because the environment didn't allow for him to pace or walk outside that door. And it was a very small area. But he just really wanted to go outside or really wanted to go to work, there were the two triggers. And I think they tried to stop that, or just for him to try and see sense. And then there were all these other things. So if you walked on wet floor, and one of the reports I saw was that he walked on wet floor, or he was walking on wet floor, and he did not comply with the demand to retreat back to his bed. And I repeat in spite my repeating it, he still did not. So on the third attempt, we had to put him in the seclusion room for an hour and 45 minutes until the floor dried, and then he was able to come out again. So that was just because it was workflow. They didn't want him to get hurt. But there was nowhere else that he could go during that time. So we've got a lot of a compliance and conforming systems. Then he moves to Linden, as I was walking in the door, john walked out. And I knew him because I'd seen him on Google on his video. But he didn't know me. So I was like, john as if some, you know, God had walked out of there. He said, Yes. I'm Gina I'm, you know, Gus' daughter. You said, Oh, I just saw Gus. Yeah, we'll take him. And that was it. And, you know, obviously, we had to go through paperwork and what have you. But his assessment was done. I was didn't have to be part of it. And he felt that he was a fit for the Linden model. So I was delighted, and I was clapping away. And john is still there. And the person that he was with at the time, also works for Hammondcare. And she's still there as well. And she said, I remember her saying she looked up. I think he made her really happy. Because I was jumping up and down. I don't think there was a hint of sarcasm in it because I was genuinely delighted. And I went I remember going in and saying dad, we've got a place, we're leaving, you know, and I don't know that he registered anything, I can't specifically remember his reaction. But I was so delighted that, you know, we had an opportunity to move, we didn't know what was on the other side. Honestly, we just needed to get out of there, to be honest.
Colm:
So Gina Linden is an nine bed unit has nine beds just because it does have a step down program for people to move out. But in case that doesn't work, or there is a little bit more time there's that editor can return to it's been designed with a lot of the key design principles and probably a lot more room to live for access to the outside now, but from your point of view, I mean, that's me describing some of the principles of this unit. And it is for people like Gus who have complex needs and need the right staff mix and the right approach. But what's the environment like from your point of view, what's important in Linden for you?
Gina:
The sense of calm despite the and and the familiar. So everybody there is the same as my dad in terms of has something that is more advanced than I guess, somebody else that might have a change behavior, any point it's the more severe kind, but it is an environment where they are free to be themselves. They are allowed to walk around pace. It has, like you said the design principles, they've got the Wayfinding paths, they have an indoor and outdoor area that they live, and the garden was very important to my dad. So who was out there, there's three levels. So the first layer of the garden is sort of the courtyard and then there's another layer that has a gazebo And then there's a third layer that has duck pond, all of which are very secure, but very large areas. And my dad has visited all of them, you know, and we always have a bit of a code that he's gotten to the duck pond if he was really agitated a certain day. So rather than medicating and holding down and restraining, there's the ability to redirect, or just try and reduce whatever's going on, whatever is triggered that you know, response. So the home like cottage and I call it home, because it is His home is almost the second family, the staff have been there from the outset. Most of them, there's still staff there that have been there since the day went dead went in, and other people have left because they've retired, they've been there that long. So their experience is really reflected in the care that everybody receives. They relaxed, because there's no with Linden, they and the cottage style environment, they don't actually have external contractors come in to do the cleaning, the housekeeping and all the rest of it, everything is sort of done in the cooking. So there's a big large kitchen that they all that you can smell the food that they're cooking for dinner, and you can see it being prepared just like a normal home, there's just a couple more chairs around the table. So dad used to have a chair pulled up, they used to pull the chair up for him, you sit there while they were cooking, and he would show peas or do something to try and assist them. You know, I think that contribution just makes all the difference because it gave him purpose.
Colm:
I have obviously this image in my head of the the ward situation those eight weeks. And I also have neither the image in my head of this man who ran his veggie shop, and needed to get up at two or three in the morning and sometimes grab a lot to get. So they can go to market and pick up the fresh bread for a shot. So what happens when he now wakes up and needs to feel it, you need to do that.
Gina:
The beauty of Linden is it's 24 seven staff. So the shifts at night. Can there's always someone around. So when dad gets up at night, which he still frequently does, he's allowed to come into the lounge room sit on the couch, he's not told not go back to bed. And if he wants to go outside, he's allowed to go outside so the doors aren't locked. He's allowed to circle and there's lights outside that allow him supervision, but he's not shadowed, and that's another thing, they allow him to be independent. Still, the environment allowed for him to be moving around just like a normal home, if you wanted to go sit in your lounge room because you can't sleep in the middle of the night. That's what you do. And make yourself a cup of tea and can ask for someone else to make one for you. But and I also think you know, he probably was scared, I would be scared moving to a place not knowing where I was, and then finding someone there that reassurance in the middle of the night. Where am I? If you went into corner and someone said going, hi, Gus, did you want a cup of tea? You know, not go back to bed. You shouldn't be out, you know, the floors, man. You know, like he's gonna get in trouble.
Colm:
Do you know I'm interested in your view on medication? Because while you're saying that nowadays, there's no, you can't go out and we're going to sedate you, if you tried to go out, medication still has a role in Gus' life. How do you feel about that? And what's your opinion on that?
Gina:
I believe that for my dad, it's imperative. in balance, it's constantly reviewed and monitored. And that's the other beauty of Linden, I've got access to a lot of health professionals that come through and provide a service. But without that medication, there's a real imbalance into how a day may go for my dad. And it keeps a more regular and streamlined mood. So you know, it addresses any depression that may arise, it keeps the agitation to a certain anxiety to a certain level, a low level. And it doesn't always work. It has to be reviewed, because sometimes adding in a medical term was only just recently explained to me. So I may be waffling now, but there can be a buildup of a certain medication you've taken for too long. And it doesn't tend to work as well as it once did. So you do have to constantly review it and reduce it. And as he gets older, he doesn't need it as much. But I do feel that it provides more of a balance for him. It's not a lot. He's still able to function. He's still able to do everything he needs to still feed himself. It doesn't impede on his quality of life or his ability to live. Whereas before, it was a simple matter of it doesn't matter if he can't get up. It's just good. Take it. You know, we can't have him walking around on my floor.
Colm:
So Gina Gus doesn't live in Linden now. How's he doing?
Gina:
With COVID I haven't actually seen him but I do know through john that he's doing well. He settled back in He's transition. So they call Linden new cottage that he's in the transitional unit, which is what it's completely designed to do. Linden isn't meant to be the forever home.
Colm:
So Gina I have in my head that you had many doors, not closed in your face, but you weren't able to get across the line. And you had that conversation so many times that when you finally found Linden, it wasn't easy to find it was by chance that you made that call. Now, here in Australia, the federal government have built on Linden and other services that came before it and launched the specialist Dementia Care program. And nine of the plan 30. Plus, specialist dementia care programs across Australia have launched. So hopefully, from my point of view, the story you'd hold me won't be the experience of many other families, they will be able to find more easily the right program, but I guess, five years old, and with this program in place, what's important to you, bearing in mind that you're not only talking to people here in Australia, but in other countries about what's important,
Gina:
I think what's important as that your family member or loved one, the person living with dementia feel safe and secure. And anywhere, that opened the door that offered that would be wonderful, to have a place where they can live and have quality of life. And I know that's used a lot, but really to be able to live instead of you know, you can be alive, but you're not living. So he was alive in the hospital, but he wasn't able to live, he's able to live, he's able to go out into the garden, he still waters the garden, I believe. But I just think that freedom to live as a person having independence and a place it's going to enable you to use the function that you have
Colm:
Gina you remain a very positive person. And I obviously have shared that you're actually our librarian. And you keep us right on the knowledge that we need to have. How is life for you to these days?
Gina:
Life is better if there was it was a terrible time after I kicked into practicality during and then after probably fell apart, because I really couldn't reconcile with what my dad had to go through. And not just myself, but to witness that it was really, really difficult to I thought I lost control. If he was losing control, I was losing control, nothing could be done. And even though it ended up being a really good outcome, and finding what happens to be the perfect place by luck, I still find it very difficult to talk about the past, because there is still a lot of guilt and a lot of grief that comes with that. But today, I have taken it upon myself to try and learn more. So I feel more confident with understanding that really, options were limited back then times have changed. And I just want to advocate so that more places are available, because I have learned that 90% of people with dementia will have some sort of change in behavior, and or personality, I should say. And when you read about it on general websites, oh, they might wonder or they might, you know, have a bit of aggression, but they don't talk about the severe a type. And that's where more information is becoming available. And I have it at the tip of my hands. And I give it to anybody that needs it and build rapport with as many people as I can. Probably not everybody wants me to be accosting them and giving them a book. Oh, you need to read this is really interesting. But I think it's a real eye opener. Information is everything. And I didn't even know the term. This is how naive I was. Because I didn't know dementia. I didn't even know that there was like change behavior. What did that mean? And so it was a whole unraveling of you know, this information to find out what does it mean, what and and what do they do? And once you read it somewhere you're most validated in saying exists, it does exist. And it's not for one person, it happens more than once. And I just think, well, he's not alone. And because of the stigma, and because of those lovely articles that are written about being mad, bad and dangerous, there is that stigma that you know, they're just unstable. And I honestly think if that is how we're going to perceive dementia with no cure, then we've got a real problem if all these people are about to go through it because we're in, you know, our hotspot of generation of dementia, then I think we're in a real problem. We're in real trouble in Australia, because they're people and they're not feral, and they're not inmates. And you know, it took 20 years for them to learn that people want to be treated like a human being. And if you can't control how you respond, behave, or you've lost your filter. I mean, we all get angry, but we can actually Blame while we got angry, you know, I slap my thigh when I laugh. Does that mean that people think, you know, I slapped the table that people think I'm being aggressive? You know, I will I be able to explain that when I'm older, I often think like that, you know, and it's a really sad way to think, Oh, I have to worry about, I'm going to try and train myself now not to slap the table when I laugh, because people are going to interpret that as something else. Later on, it's all comes down to interpretation. So I think trainings really important in case studies, because that shows people that this is how they might have dealt with it. And it doesn't always have to be medication, it can be interventions, so many therapies now that I've read about, so working in the library has led me to find all that information, and hopefully support someone else. And that's what it's all about supporting other people, and I guess staff as well, but I like to support the community, you know, just the wife that might be at home with her husband that doesn't understand what's going on, and what can I do, and oh, you know, she probably hasn't got time to read the book.
But knowing that there's a bit of support out there, or somebody understands you was all I probably really needed for some time,
Colm:
Gina, you sharing your story, not only helps us understand things better, but I think about the person who's listening to this, who has got some advice and tips from listening to you. And they also feel that you had Gus very present in the room with us and sharing his story. So I thank you for your honesty and the privilege of listening to that.
Gina:
Thank you Colm
Colm:
Thank you for joining me today and for the pleasure of your company. I've been your host Colm Cunningham. And thank you also to the dementia center podcast team for all our fact checking. I look forward to you joining us next time on The dementia podcast. Bye for now.