Susan Braedley 0:04
I remember the first time I presented on my work on Joy to our research team, I was getting some very dubious glances from colleagues. They weren't really buying that joy could be a critical angle, a way of thinking about nursing home care that could take us anywhere for our research program. And I'm quite proud to say that I think I've convinced pretty much everybody on that. You know, we have seen many, many I mean, I have millions of instances where we've seen joy in nursing homes. So this isn't just a potential. We've seen it.

Sally Chivers 0:51
Welcome to Wrinkle Radio, where the stories we tell about aging matter. I'm your host, Sally Chivers, and I am so glad you're here. I'm joined again this episode by Susan Braedley. Last time we talked about the future of nursing homes. And in this episode, we're going to talk about dignity and joy. You might expect to hear about dignity, but maybe joy is a bit of a surprise.

1:26
This episode is being released on Wrinkle Radio's one year birthday, and I'll talk about that a bit at the end of the episode. It's also coming out just before the holidays, and when I was thinking about the holidays and nursing homes, I remembered something that happened during the research that Susan and I did together. you might know from last episode that we traveled the world studying nursing homes, looking at ways to do nursing home care better. In this case, we were spending time at a nursing home in Nova Scotia. this nursing home had brought in a Christmas tree, the residents loved it so much that even though we were visiting in spring, they kept it and they trimmed it with Easter eggs and spring flowers. The residents just loved having the festive foliage so much so they wanted to keep it all year. And the workers were like, Sure, whatever. Whatever makes people happy. An the tree was just one way that this place was different from others that we'd been in. It was a flexible place. it was well-designed. It didn't have locked units. It had plenty of choices for residents to make, like when and how to eat. It had easily accessible, unencrypted wi fi.

I chose to sit near this holiday tree to take the notes that I needed to take on my iPad. And I watched residents gather for a really lively trivia game. as that activity wound down, this old woman dressed to the nines like she had full makeup on, kind of teetered over to me. And I remember her swollen ankles that were wobbling over these impossibly small kitten heels because I remember walking behind my grandmother wearing a similarly improbable set of shoes that I could never pull off even in my fifties. She said to me, “Do you love your iPad?” And I just straightened up and I said, “I do.” And I was about to explain what an iPad was to her. And she just said, “I love mine, too.” And she turned her heel and wove her way down the hall. So I had to laugh about my automatic assumption that she wouldn't already know what an iPad was. And wrote down some notes about this moment, and I wandered down the hall myself,

3:57
and then I forgot about the encounter because another resident had an absolutely violent outburst. Dishes crashed to the floor. She hit another worker. She scared people. So that incident really took over the discussions we had as researchers when we all went back over what had happened during the day. But the next day I returned to my perch next to the holiday tree to go over my notes and to watch an even livelier game of shuffleboard. Now, this game of shuffleboard was hilarious. It was an adapted board so that it could be placed at any height, but it also was really designed to work by feel. So people were laughing their heads off, taking their turn. As a woman who was completely blind beat the pants off the rest of them. I haven't laughed that hard since, I don't think. And everybody was enjoying themselves so much, including my kitten heeled friend. she sauntered back over to me and she gestured to my iPad and she said, “Can you get Peggy's Cove on that?” So I Googled this storied tourist destination with its iconic lighthouses, and I thought, Wow, I'm going to offer this woman a rare glimpse of a distant outside world, seemingly having forgotten that she had already told me she had an iPad and that there was free unencrypted wi fi. And she pointed to the black and white stock image that I pulled up. And she said, “I grew up right over there.” I was moved. And then she went on and she said, “I watch it every night in my room.” She paused. She took a deep breath. She really sized me up and she said, “It doesn't make any noise…” Her voice trailed off. She glanced around nervously with a bit of a quiver.

My colleague from Nova Scotia told me later that she would have been watching a live stream of Peggy's Cove, not some static image like the thing that I pulled up on Wikipedia. So I still really hadn't learned my lesson about technology and how adept this woman was at that. But beyond that, I found out that her room was right next to the room of the resident who had had the violent outburst. So when she was pointing out that it didn't make any noise, she was trying to tell me how important it was that she felt comforted, but that she could feel comforted without drawing any attention to herself.

6:50
To me, this is a beautiful story that combines the joy that is possible in a nursing home, along with the grittier parts of living in a nursing home. And I think it also relates to dignity. Susan Braedley has studied the combination of all of those things. And so here is what she told me, first of all, about what she means by joy.

Susan Braedley 7:15
I talk about joy as meaning: opportunities to have meaning in our lives. I talk about joy as sharing: opportunities to share, to help, to exchange. I talk about joy as pleasure: sensuous, sensual, pleasure, real, you know, laughing so hard, your belly aches, feeling deeply and having wonderful pleasurable experiences rinses. And I think joy is also belonging: a sense that there is a place and a way that I am accepted for who I am and I belong here. I belong with these people. And to me, all those things relate to dignity. If we feel that we are valued

8:21
and that we are accepted, that we are treated in ways that respect our personhood, then we are much more likely to be able to experience joy. Without it, there's no chance at all.

Sally Chivers 8:41
That's Susan Braedley, professor of social work and director of the Institute for Political Economy at Carleton University.

8:51
As I hinted at the end of the last episode of Wrinkle Radio, It's not random that I'm asking Susan Bradley about joy. Over the period of about a decade, she gradually convinced our research team to take joy seriously. We were about as skeptical as you might be feeling right now that this was not possible or important. The definition Susan just gave helped me clarify what was joyous about the trivia and shuffleboard games that I just told you about. But you'd kind of expect that if you were going to find joy anywhere in a nursing home, it would be near the activity director.

9:29
Her point about dignity, though, teaches me that my iPad friend could experience that joy at the shuffleboard and the trivia games because she had access to free Wi-Fi and she knew how to use it to soothe herself amid worrying chaos at other times. When we talk about joy in this episode, we're not suggesting workers or residents or family members could or should simply turn their frowns upside down. That wouldn't be meaningful. That wouldn't be joyous. That wouldn't be dignified. So in case you're worried that we've lost track of the grittier aspects of nursing home life or challenges of the work there, Susan offered me an example here that will reassure you that we understand all of that.

Susan Braedley 10:23
The conditions of dignity are essential to experiencing joy. I've just had the opportunity to complete a project with a wonderful master's student and a colleague in industrial design, a project on continence care in nursing homes. a topic that has been very much understudied. Yet issues around continence are central to the reasons why people go to nursing homes is because they're having trouble with toileting and need support for that on a regular basis. And so since they're so central, they also make up a good deal of the daily work in nursing homes. Handled well, good continence care offers dignity to residents and with strong work processes. This allows workers to experience dignity in offering that care. if you can imagine, I'm going to get very visceral here, Sally, but this is the daily aspects of nursing home care. Imagine that you fear that you absolutely could not use the toilet unsupported

11:38
or that you were using a continence product, that you could not change yourself and that every day you were going to dread your care around toileting and the cleaning that's required. that is no way to live and there's no way that you can have joy. So to me, continence care is one of those basic aspects of nursing home care. And in exploring that, we did see ways that continence care could be improved for both workers and residents offering more dignity. To me, working on that is working on the conditions for joy. If I'm worried about my toileting all the time. And as a worker, I'm worried about how a resident is going to react in those instances. Am I going to be hit or kicked? Am I going to do damage to this person? Am I going to hurt them or injure them? That creates those poor conditions of working care that absolutely undermine dignity and prevent joy.

Sally Chivers 12:50
When I was trying to think of a title for this episode, I almost called it Shits and Giggles, and I almost called it that because of the way that that story goes together and is a necessary condition for the other stories Susan told me that I'm about to share with you. And these are the stories of joy happening right now in nursing homes, we're not just projecting into the future here, but talking about something that can happen even in the current moment. The first story that I'm going to share with you is from a nursing home in the United Kingdom.

Susan Braedley 13:34
it was a lovely afternoon and people were gathered in an outdoor area. One of the managers at the home had a bottle of Baileys and was going around and offering a little beverage to everyone who cared for it. There were other choices, but Baileys seemed to be the popular one. The outdoor area of that nursing home was quite close to other things that were going on in the downtown town of that area. It was quite close and there were some family members who were volunteers that were gardening at an adjacent garden. There were people walking by and different people were coming into that garden and saying hi. It was clear this was something that happened regularly. They were all also offered a shot of Baileys. There were jokes and fun going on. This was not an unusual outing. There was no fuss. There was no special occasion. This was life at this nursing home. This was it's a gorgeous day. We're going out in the garden and we're going to have a little beverage while we do it, and we're going to have a fun time and we're going to talk to the people that come by. It wasn't: a garden party. It's been on the calendar for three weeks. it was a response to beautiful weather and a lovely situation and everyone worked around it to produce joy in that moment. I'll never forget it. it was antithetical to the kind of rigid institution where there's no flexibility, where there's no ability to kind of respond to just the mood of the day, the weather, the opportunity. And it was delightful. There was real joy, the laughter, the jokes, even the residents who were nonverbal and in wheelchairs were taken outside to enjoy the sun and were part of the group. really there was a sense of belonging, there was a sense of pleasure, there was a sense of sharing three kinds of joy all together. And I'll never forget it.

Sally Chivers 15:39
Like the promising practices that Susan explained last episode, that just sounds so obvious. It's a nice day out. Let's have a garden party. But you might know from your own experience that there are all kinds of rules and even prejudices about what older, frail people should do that stop that kind of spontaneous fun from happening.

16:04
There's a lot to learn from that story. flexibility, fun going with the moment, figuring out how to include everybody. The second example Susan told me about from a nursing home in Canada is much more deliberate and planned, but it still shares some of those basic principles.

Susan Braedley 16:23
Another very different example is one that I experienced at this amazing nursing home that has artists in residence and two art studios. I met a man who told me that he had been an engineer at a very high level, actually, in the private sector and spent some time in federal public service. he'd had quite the career. And he had come to the nursing home because of frailties that included decreasing vision for a number of reasons and physical frailty. But his hands and his fine motor were still very good. And he said when he came to the nursing home, he was feeling very much that this was the step before he would die. He'd kind of given up. He felt very discouraged and quite depressed, and the staff had encouraged him to go into the art studio and just see. And he thought, Oh, well, I'll make them happy at least. I'll go into the art studio. He said to me, “I never thought I would learn anything new ever again and look at me.” This man had developed a sculptural practice. He explained to me that while his entire life he'd been entirely realistic, he talked about his engineering drawings and how everything had to be to scale and absolutely correct. But with his decreased vision and working with the clay, his work had taken on a kind of abstract, almost impressionistic quality. He was selling his work. It was popular. It had gone into a display case that was in the nursing home and occasionally they would have a sale and his work was just flying off the shelf and he really enjoyed it. He said he spent most of his mornings. He would spend an hour or two in the art studio. The other thing is he was telling me, “you know, I'm slowly going blind. I don't know whether my body will give out before my eyes, but my eyes are going,” He said, “I think I can keep working now. by touch. I'm curious about how my work will continue to develop as my eyesight declines.” This man was experiencing meaning, sharing, pleasure, but also this sense of actually curiosity and creativity, a sense of being alive through learning and creating and expressing. It was remarkable. And again, it's one of those things I'll never forget.

Sally Chivers 19:12
In the Wrinkle Radio episode with Ulla Kriebernegg, she asked me where I wanted to grow older, and I talked about how I do expect to live in a nursing home in my future. And I said that one of my biggest fears about that was meaningless activities. I really fear having to bang meaninglessly on a tambourine. And that being my only access to making music, because participating in choirs has been an important part of my life. So I really love this story that Susan told me about the Artist in Residence program. And maybe like me, you're wondering where these nursing homes are. You want to know where they are because you might want to move into them. So I just wanted to clarify that we're not being coy by not naming them. As part of the ethics approval To be able to do this research, we had to promise confidentiality. And to give that confidentiality, we had to agree not to reveal the names of the places we were studying. I can tell you how to find one place where a similar program is happening, though you can find the National Film Board documentary A Year at Sherbrooke, and it tells the story of a nursing home in Canada in Saskatchewan that brought in an artist in residence. It's a really lovely and informative movie. And in it, there's this man who seems so much like the person Susan's describing that that's who I was picturing as she was talking. As I listen to Susan's story and back when I watched that movie, I noticed a divide between people like him who took part in the art program. They were able to talk to the documentarians. They talked about their experience. They talked about their art practices. And they did this kind of serious, sellable art. In the movie, there's an exhibition at the local art gallery even. And that made me think about how I've also learned that one of the things that stopped some of us later in life from being creative is that feeling that we have to really be good at it. That kind of idea that got drummed into us in school. So while Susan was telling this story, I started wondering about whether at the place that she was at residents with dementia or people that just weren't really that good at art or people who were nonverbal were also benefiting and finding joy from this artist in residence program. and of course, Susan told me a story about that without even having to ask her.

Susan Braedley 22:02
Right beside him was a woman who was also doing clay. She had advanced dementia, she was nonverbal, and really needed a lot of support in doing her work. Her fingers weren't working so adeptly. it was fun to watch the artist work with her so that she could participate. Her joy was in the sharing. You could see that she enjoyed the touch from the artist as he helped her by supporting her hands as she shaped a bowl. How she enjoyed the conversation and being with people there. She wasn't creating the kind of artwork that the man beside her was, but she was a part of something she was experiencing belonging. clearly she and this artist had a relationship and she was having lots of fun. it was lovely. And again, I heard that she spent an hour or two most mornings in that art studio. Joy!

Sally Chivers 23:07
You don't have to be a blind winner of a shuffleboard game to be part of the absolute spontaneous joy or planned joy of an activity that involves a game and artistic practice, a party that happens layered on top of all of the other aspects of nursing home life. Susan made a short film about dignity and joy in nursing homes. I will link it in the show notes to this episode, and there was a comment in response to that saying, That all sounds very nice. That hasn't been my experience. And how can we get there now? I asked Susan directly about that, a she gave me some really practical tips about what we can all do to help create the conditions for dignity that are also the conditions for joy.

Susan Braedley 23:56
if you have person that you are caring for who is currently in a nursing home, please join the family council. Family Councils are an incredibly important advisory group within nursing homes. Every nursing home in most Canadian settings is supposed to have one know that with the care responsibilities and other responsibilities that people have, finding time to join your family council may feel overwhelming, but if you possibly can, please do. I think that can bring your voice louder and it can do it in a way that is supportive of staff and gets to management as opposed to trying to solve problems just at the level of the individual and individual staff.

If you are living in a nursing home and are able to, join the residents council, these again are very important advocacy bodies that again are Most nursing homes have and are supposed to have and again get issues at a different level and can be tremendously supportive and helpful.

If you are a worker in a nursing home, I really recommend that you get active with your employee group, whether that is a union or another kind of organization. Unions and other worker organizations have been relentless advocates for long term care. The reason that we have had some of the most progressive legislation improving long term care has been very much due to the work of workers who are concerned about residents. I wish everyone knew how much advocacy workers do on behalf of residents and their families as in Canada. They have been at the forefront of every struggle around long term care,really recognizing that unless we have legislative and other kinds of change, the conditions of care will not improve.

For those of us like me, I think becoming active with your local health coalition is a wonderful way to support improvements in long term care one of the wonderful things about volunteering with the health coalition is there's ways to do quite small things that you can do from home as well as bigger things, and you can use your talents and skills to advocate for long term care.

Sally Chivers 26:22
I've traveled with Susan to do research. In fact, when we were doing that research at the Nova Scotia Care Home, she, I and two other colleagues literally danced in the parking lot spontaneously, fulfilling every part of the definition of joy that she started this episode with. And we needed to do that in relation to some of the more difficult things we were seeing, like that very violent scene that I described. So I know that Susan derives joy within and from her research work

26:56
But I wanted to hear more of a personal view about how she expects to experience joy as she continues to age.

Susan Braedley 27:05
Doing new things is something that gives me joy. The work that we do as researchers tends to be quite all consuming. It's so fascinating and we're so lucky to do it that it can kind of take over your entire world. This summer, I caught some fish. That's something I haven't done since I was a kid. And I found out I'm not squeamish about worms at all and really enjoyed fishing on the Great Lakes. Doing new things. It doesn't have to be anything extraordinary. But pushing myself to do something. I was also fortunate enough to do some hiking that was a little beyond my comfort zone this summer. And so as long as I'm physically able, I will continue to do new things that way, but also new challenges in small ways, reflecting and learning to deal with my temper (ha, ha), to negotiate complex relationships, to improve my skills and abilities, to do lots of things that scare me and that gives me joy.

Sally Chivers 28:18
I wanted to talk about Joy as many listeners of Wrinkle Radio head into the holiday season. And I hadn't thought about the fact that complicated relationships are also part of spending holidays together. So once again, Susan brings me a surprising lesson, like a surprising dance in a parking lot. I am so grateful to her for all the joy she has brought me, for the dignity that she provides all of us in doing our research.

28:53
And my dear listeners, it has been exactly one year since the release of the first episode of Wrinkle Radio. I had no idea the joy this was going to bring me. And you are all a big part of that. So thank you.

29:12
This has been wrinkle radio. Thank you for listening. I am a proud member of the Amplify Podcast Network. If you haven't listened to their other podcasts yet, that would be a great way to spend your holidays if you have them coming up. And if you're wondering what holiday gift to get, for me, it's really simple. It won't cost you anything but a moment of your time. Please head on over to Apple Podcasts or Spotify and leave me a five star review. It makes a big difference to who else gets to find Wrinkle Radio. And please tell your friends. Tell your family. Tell your colleagues. Tell your kids. Tell whoever brings you joy. And remember, don't panic! It's just aging.