Introduction Episode, Transcript

 Introduction Episode, Transcript 

[Music] 

Michael: I'm Michael Ruderman, and you're listening to Postcards from Long Term Care. In this podcast mini-series, you'll be hearing directly from long-term care residents about how they experience their lives in an institution of care. This is an introductory episode to help provide a little context for the project, which is part of my large culminating research for my PhD in psychology at York University. I'm going to try to make this as brief and clear as I can because it's important to me that this episode and the miniseries as a whole is accessible. You don't need any previous knowledge about long-term care or academia or research to engage with the podcast. And yes, this is part of a university research project. But you'll see that these postcards are not dry and academic. Right. You will hear very personal stories of wrestling with the meaning of home: 

Anna: That's not home for me, that will never be home for me. 

Michael: Experiences of joy. 

Bob: It's a beautiful place to be. 

Michael: The importance of music. 

Grace: But music is music. And it bring people together. Some. 

Michael: Dangers in the home. 

Caesar: I don't agree with the fact that this is a safe environment. 

Michael: Finding meaning in long-term care through art.  

Jackie: I thought about it and I thought, "I'm a writer. I am a writer. La la la la la." 

Michael: And so much more. [Music] In this episode, I'll tell you a bit about the context for this work, the project itself, as well as some things to keep in mind while you listen. I've bookmarked the episode in the show notes, so feel free to use that to hop around to areas of interest in this episode as you listen through.  

So we're talking about long-term care homes. You might know them as nursing homes. These residences provide the most intensive form of care in Ontario, involving 24-hour support. So there's care staff there around the clock to help and provide care whenever it's needed. Very often, people prefer to quote-unquote age in place, which is getting older at home instead of moving into a long-term care home. But it's not always possible for a range of reasons. And though often overlooked, residents of long-term care homes are not always older adults. It's less common, but younger adults may need to live in a long-term care home to manage a health condition or a disability. We don't have any very young adults in our group, but a couple postcards in our collection are from residents who are currently in middle age or at least began their time in long-term care in their middle age. Now, a lot is said about long-term care and long-term care residents by journalists and by politicians. And this is especially true after the horrors of COVID-19. [Ominous music] Poor institutional preparation, tight living quarters, our lack of knowledge of COVID-19, it all resulted in these massive deaths in long-term care homes and a lot of suffering. The deaths represented about 80% in the first wave in Canada. Care workers and home administration fought tirelessly through this period and stories of heroism and tragedy appeared daily in the news. But despite its coverage and frequent discussion by politicians and attempts to address the crisis, I and many others couldn't help but notice that we rarely heard from residents themselves. So we heard a lot about them, but rarely from them. And frankly, this appeared to be the case before COVID and still is now. And maybe this shouldn't be so surprising. I think we can understand long-term care residents as a multiply marginalized population. Residents live with disability. They're largely older. They are largely women because women tend to live longer. And they often lack the social and financial supports to age in place. If we want to improve long-term care from my perspective, nothing is more important in these homes than listening to residents and listening hard, especially when it can be hard to hear. And that's what this project is all about.  

But before I get into it further, I'll tell you a little bit about myself. My name is Michael Ruderman. I'm an actor turned doctoral student finishing up my PhD in research psychology at York University in Toronto. The kind of research I like to do is untraditional. And one thing I really enjoy doing and think is really fruitful is exploring how art and science can be integrated to create both richer research and compelling art that can meet the moment. So now I've been volunteering in long-term care for over four years and counting and have helped with some other art research work in long-term care. I won't go into that now, but I encourage you to check out the project COVID in the House of Old, led by Megan Davies. There is a podcast and website that you might find interesting. Through this work, I've heard many stories from many residents and loved ones about life in long-term care. And these stories I had just never come across before and it made me realize that this was a really important and underrepresented experience that desperately deserves a mouthpiece. This was part of what fueled this project called Postcards from Long-Term Care.  

[Music] So I partnered with a long-term care home in Toronto, and I worked with eight residents to try to tell their stories of life and long-term care. To do this, I built on a previous research technique called "sound postcards." So here's what we did. Together, each resident and I recorded sounds from their home that they found particularly meaningful. Something they wanted listeners to hear or to consider, to better understand their life in long-term care. I also conducted interviews with participants about their sounds that they recorded, right, and their sound environment. And in these conversations, the sounds sort of functioned as a springboard into exploring their experiences more broadly. So if a postcard maker told me about the sound of their TV, for example, we might start to discuss why they watched TV at all, what it reminded them of or distracted them from, maybe. Maybe their neighbors complained about the volume of their TV and so on. In this way, the sound served as this interesting entryway into a larger understanding of experience. Armed with these recorded sounds, recorded interviews, and the resident's input, of course, for the postcard, I edited together first drafts of the brief postcard episodes that are included in this mini-series. I took these drafts back to the home to get input from each participant and refined them until the resident felt really good about the final product. Often they were happy with the first draft, but some postcard makers really wanted to engage with that revision process.  

Ultimately, I got to know some of those residents quite well, and with each postcard, I've tried to capture something of what makes them uniquely them. We have eight very different stories, so if you find that one story doesn't really resonate with you, I expect you'll find another one that does. It is every individual's uniqueness that I hope you take away from listening through, and the need for a care system in Canada that honors and celebrates this unique personhood of each resident.  

Now, about the home. Long-term care in Canada is complicated. There are private and not-for-profit homes, and of the not-for-profits, there are government and non-government run homes. So each category has its own unique context and challenges, and there's a lot of variation from home to home. These postcards were all made within the same not-for-profit home in Toronto, Ontario that is not run by the city. And I'm going to be keeping that home name anonymous.  

So as you listen, you might hear stories that don't necessarily line up with your experiences in part because of the context of the home. So we definitely need more opportunities across these contexts to hear directly from residents, but I think this is a good start. And I think can shed some light on not-for-profit experiences in major Ontario cities.  

[Music] I wanted to say a word or two about why we are focusing on sound in this project. [Ambient sounds] We don't often think about our sound environment, but it's crucial to how we understand and experience our environment. And I think this unusualness of attending to sound is part of what I really liked about working with it, because it helps you see your environment anew and really think deeply about your experiences that have become commonplace. It was a really important thing to do with this project, where residents often didn't quite know what would be worth discussing. Really importantly, I don't think there's an intrinsic meaning to these sounds, but how we interpret them can say a lot about how we experience our worlds. So throughout the postcards in this series, you're going to encounter different understandings of what seems to be the same sounds. For example, the yelling of other residents down the hall [yelling], or silence. It also might be worth thinking about how you might hear a sound differently from how the postcard maker hears it. Finally, I hope the sounds shared here will help to immerse you in these stories and experiences. Many of them are actual recordings from space. Others were sourced online, selected carefully to either closely mimic sounds that we couldn't capture or to try to convey sort of abstractly more complex moods or ideas that we couldn't explain in the brief postcard format. Participants differed in what they wanted to record, right, how much they wanted to record, whether they wanted to use sound literally:  

[sound of bed] 

Bob: Yeah, that lowers the bed and raises the bed. 

Michael: Or whether they wanted to use sound metaphorically: [sound of glass cracking and breaking]. So each postcard will sound quite different.  

Now before you listen through, I wanted to share a couple things to keep in mind. First, the audio wasn't recorded in ideal conditions. We were on the go with portable microphones, so the quality isn't always perfect. Sometimes it's pretty good, but often it isn't. I have worked hard to salvage certain segments that I found particularly important or meaningful, but even so, we'll have to embrace a more DIY style for this project. Almost all residents wanted their own voice included in the final product, but one postcard maker, whose pseudonym is Charlie, he didn't. So I got to work with a really wonderful actor, Nicholas Rice, who performed their text verbatim. Some of these stories do contain potentially triggering and upsetting content. So if this is a concern for you, please read the show notes. There I'll make sure to indicate challenging content. I want to stress that this podcast is not inherently a condemnation of long-term care, and neither is it a celebration. Right, it is a platform, an amplifier to hear from residents about their lives. So if a resident wanted to condemn, then I tried to help them do that. And if they wanted to celebrate, then I worked with them hard to celebrate. Most postcards, though, are neither. Right, they're more nuanced depictions of complex life in long-term care.  

[Music] I think there's something in this podcast for everyone. I think especially though this podcast is for residents, loved ones, care workers, policy makers, and I guess all of us who care to know more about the lives of those who are rarely listened to. I hope you enjoy it. 

Feel free to contact me with any inquiries or feedback. I've included my e-mail in the show notes. Please do provide feedback, subscribe to the show. There may be forthcoming, uh, podcasts even after this series as we try to continue this conversation about long-term care in Canada. 

A really big thank you to our contributors and collaborators, Nicholas Rice, Julia Vecio, John Maize, the research team and care staff at the partnering long-term care home, without whom this would not be possible. At York University, doctors Michaela Hynie, Karen Fergus, and Thomas Teo. And of course, to the amazing postcard makers who so generously shared their stories with us, thank you. And thank you to the listener. Please enjoy.