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Redefining Dementia
resources and helpful life experiences, the podcast will look to connect with the audience to provide helpful and meaningful takeaways.
Redefining Dementia
Exploring the Transformative Power of Stillness in Dementia Care
Imagine if through the practice of stillness, we could unlock a deeper sense of calm and peace, not just for ourselves, but also for people living with dementia. Professor Dr. Gary Irwin-Kenyon, our special guest for today, shares his incredible journey finding tranquility through martial arts and Tai Chi, and how these methods can bring profound benefits to those with dementia and their care partners. We take a deep dive into the fascinating world of stillness and its immense potential in dementia care.
Discover the importance of being fully present in each moment, a practice that is often overlooked in our fast-paced, do-it-all lifestyle. It's about striking a balance between doing and being, something Gary poignantly points out can be instrumental in turbulent times. We also discuss the refreshing concept of giving ourselves the green light to take a much-needed break, a vital component of self-care, especially for caregivers.
We delve into narrative care, a mindful approach of using stories to communicate with people living with dementia. We part with a thought-provoking discourse by Gary on how stillness can be a haven from our chaotic world. Join us on this episode of Redefining Dementia as we explore the enchanting essence of stillness and its transformative power.
About our Guest
For the website and full biography of Dr. Gary Irwin-Kenyon, please click HERE.
Gary's Instagram can be found HERE.
About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Redefining Dementia. I'm Ashley King and I'm Daphne Noonan. Thank you for joining us. We are your co-hosts as well as the co-founders of Person Centered Universe, where we help you provide person-centered dementia care at home, at work or in your community. Through the Redefining Dementia podcast, we are striving toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 2:When consuming resources or media about dementia, the focus is often on the challenges, stigma and fear that may accompany a diagnosis of dementia. This podcast seeks to shift that narrative to focus on and celebrate living well with dementia and what that means for caregivers, through the sharing of stories, resources and helpful life experiences. We hope to provide you with helpful and meaningful takeaways for your journey ahead as special note before we begin.
Speaker 1:This information shared in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we encourage you to seek medical advice from a qualified healthcare professional.
Speaker 2:We are so excited to introduce you to our first Redefining Dementia podcast guest and our dear friend, dr Gary Irwin Kenyon. Gary is a founding chair and professor emeritus of the Gerontology Department at St Thomas University in Fredericton, new Brunswick, canada. Gary is listed in who's who in Canada and has authored, co-authored and co-edited six books, including Narrative Gerontology, storing Later Life, restoring your Life and Ordinary Wisdom. He is a teacher and practitioner of Tai Chi with more than 30 years experience and designed the program Tai Chi as Narrative Care, which he has been teaching for the past 25 years to special groups, including two residents in long-term care. He conducts workshops and seminars in Canada, the United States, europe and Asia. Gary is also an apprentice barista. He resides in St Andrews by the Sea, new Brunswick, canada, with his wife, liz, where they operate sea haven and organic B&B.
Speaker 2:In today's episode, gary addresses caregiver self-care and the many pathways to stillness through which we may find meaning and peace. Gary also shares practical ways that caregivers can practice stillness even during the busiest of times. We also address ways to find strength and meaning amid dementia as we continue to connect, love and learn alongside each other throughout the dementia journey. So, gary, thank you so much for joining us. And the question, the first question. I think the best place to start would be just if you could tell us a little bit about the practice of stillness and sharing as much as you would like to, about your own personal journey with this you know about practicing stillness in your life and how it's helped you.
Speaker 3:Thanks and good to work with you, with you again, both you and Ashley.
Speaker 3:Well, I first I guess I've been interested in stillness, meditation, various things like that Since I was in my early 20s.
Speaker 3:First I did a lot of karate training, like martial art training, not for fighting but for the for the art part of it and the meditation part of it, and then moved on to more Tai Chi after not so many years.
Speaker 3:So I mainly been practicing Tai Chi for quite a long time now decades and as I talk about in my book, I didn't really encounter anything that sort of pulled the rug out from under me until a bit later in my life maybe I forget what age I was, but a while ago. And then I had an experience that where I just felt oh, I guess I should say with previous to that, if I had a problem or I was upset about something, I figured I could just kick and punch my way practicing Tai Chi or practice my way out of it and there wouldn't be any problem. But I had an experience where that simply didn't work. So I realized that I didn't have control over my situation any longer and I also realized that I didn't think I could do it myself anymore, and I also say, deepened my understanding and my need for stillness practice of various kinds.
Speaker 2:Yeah, that's, that's amazing, and it's interesting how just hearing you say that it makes me think of so many different examples in my own life where we, as humans, we tend to. You know, we develop coping mechanisms of our own right and we become very attached to those Coping mechanisms were creatures of habit, right? So you know, sometimes it's good, it's really neat to kind of hear times when it's the hardest is is a good time for you to open yourself up to something else.
Speaker 3:Yeah, I think it's not the. We wouldn't want to set it up this way, but it seems like for human beings, we awake to these things like stillness and through suffering, through, through loss or suffering or grief. Some of us know it can happen through positive experiences as well, but at least in my experience a vast majority of people I've come in contact with in my personal life and my professional life as a gerontologist I've been through loss and trying to find meaning, new meaning in your story, in your life, through having suffered, suffered something. So you know, as I say, we probably, if we had a choice, we'd rather not have to go through these things, but I guess there's another way to look at a lot of the painful things that we go through.
Speaker 4:Yeah, that's a really great point, gary. Thank you for sharing that. It kind of encourages me to think about the fact that our lives and what make up our lives are essentially a series of stories. Whether good or bad, they all comprise who we are, and how we adapt or how we rise to challenges and experiences really defines and identifies who we are. So, gary, can you share maybe how someone might practice stillness and how it might enhance their well-being.
Speaker 3:Yeah, there are many pathways I would say because that's my favorite word about these things Many pathways to stillness. Some are more formal, like prayer or meditation or Tai Chi or any kind of religious practice. There are pathways to stillness. And then there are many, many informal practices and that can get quite personal. As you say about stories, we all have stories or find ways to find meaning, and that could be through things like gardening or things that we might focus on collecting. They're kind of things that go beyond being a hobby and really help us to get up in the morning. I'll give you an example of stillness can be many different things.
Speaker 3:I have a friend who, a couple of years ago now, lost his wife. So I passed on my book to him. I said you know, you may want to throw this away or might not mean anything, but I'd just like you to have this. And he said well, he said thanks a lot, you know, it looks really interesting. But he said I'm more interested in manuals, like manuals for building a car or taking a motor apart, that sort of thing. I said that's no problem, you know, just thanks a lot for the feedback.
Speaker 3:Anyway, a couple of weeks later he got back to me and he said you know, I was thinking about this stillness stuff. And he said you know, when I'm on my, my e-bike, and I'm over on Minister's Island around here and I boot it on those trails, all of a sudden I have no sense, I'm in the present moment, I have no stress, I feel fine. He said is that stillness? And I said you got it. That's another way to find stillness. It doesn't necessarily have to be sitting cross-legged in a chair, you know, following your breath, although that's a. That's a very basic pathway to stillness, basic meditation practice.
Speaker 2:That makes me think.
Speaker 2:Thank you, gary, so much.
Speaker 2:I always love listening to your stories and it makes me think a lot about a term that you often use.
Speaker 2:It's about the month like our monkey minds, and you know how important it is to kind of to quiet our minds and just kind of in like as we're going about our lives. I often refer to that as that concept, as being on the hamster wheel of life that we're often on, and I think that just to share a little bit of insight of my own journey with stillness over the last few years, it was only when I started to realize what you just said, which is that it actually is really about finding kind of the everyday moments to quiet your mind, and I guess for me I would say, in spite of the world might be happening around and around me, and once I've realized that it can be just as simple as that, it made a really big difference for me personally in terms of how I can find those pathways. As you say, I just you know maybe wonder if you could share a little bit with our listeners about that concept of the being versus doing and and fighting our, our monkey minds.
Speaker 3:Yeah, that's a good question. We human beings tend to be doers on an individual basis and as a culture, and we tend to overlook this other aspect of ourselves, which is about being and it's actually a biological phenomenon too, and there's more research being done, more and more about this that we are evolving more to being beings, human beings, and so I think that's what I'm going to come out Thursday, where we the doing part is more of our animal heritage and it's based a lot on fear and kind of closing in and shutting down and, I think, getting ready for the for the tiger to eat us. And you know, a long time ago we needed that. We needed that, that kind of energy and that state of mind, but now it's not so much being eaten by a tiger.
Speaker 3:We tend to have more sources of chronic stress, and then that's our sympathetic nervous system, but we tend to overlook that we also have something called a parasympathetic nervous system, which is about healing, loving, kindness, compassion for others and also for ourselves. So that's what we're what we need to do and what's still what all these kinds of stillness practices do, whether it's in the company of another person or on our own. It gives us an opening and strengthens our being mode, and we, we all, very, very much need that right now. We're in our workplace. In the world situation right now, we really do have a refuge, another place to go or another way to be in all of this chaos, and that's with stillness practice which, as you say, is has more to do with being than doing. Of course, we still need to do for our daily life and relationships and caring for for everything, and if there's no balance, we tend to end up burning out, as as many, many of us are finding out these days.
Speaker 2:Yeah, so I think, just you know again, you described that beautifully and I think to your point. Of course, we will never. You know, there will always be the world happening right and we'll always have that, that need to do things and, you know, going about our day to day lives. But I think for me it was actually learned this from you, believe it or not is that the giving myself permission to feel that sometimes I can find stillness just by not having a schedule or not, you know, just by having a like a half of a day or a half, or where there's no task list, there's no, you know, and just being okay with that and being being able to just be and, and you know, have those moments that are a lot more intentional in terms of you know, however, however few and far between they may be some days, it's the the ability to recognize the value of those kinds of moments as opposed to judging oneself for them.
Speaker 3:Yeah, that's a good point. We tend to think, many of us tend to think, that if we're not doing something we're wasting our time. We feel, like you say, guilty about not doing. I go to a monastery in northern New Brunswick a couple of times a year and I remember talking to one of the monks there about. I said you know, some people in the church think that you, that you guys, because they're guys, you guys do nothing. You know, you just pray all day and you know really what's, what's the point of that? And he said the first thing he said was he has a British background. He said well, he said what's wrong with wasting time? And you know? Then he went on to Actually, these monks, they have jobs during the day as well as all their meditation and praying, so they're rather rather busy In their life, but they still have.
Speaker 3:They try to do all the work With the same spirit. In Tai Chi we have the same. We say it's there stillness in movement and movement in stillness. So when you're standing still with the meditation position, you want to relax and you feel, start to feel some peacefulness and feel better, and then, when you're moving in the movements of Tai Chi, you want to try to have that same experience, and I think that's what he was getting at with the monastery that you, you can always be in this present moment, whatever it is that you're doing now. That's. You know, that takes a lot of practice, in my opinion, and not all of us can be there all the time. But, as you say, daphne, even a little bit, even even reminding yourself and this is all part of Self-care, which you you talk a lot in person-centered universe is the importance of self-care, which is really not to feel, to feel good About taking a break, make basically taking a break in whatever form that takes for you. So if you're a caregiver, you have somebody at home that you're caring for. It's really I find, in my experience anyway with caregivers that they have a really difficult time To give themselves permission to take that break to either go.
Speaker 3:I'll give you another story of friend of mine in St Andrews here has been caring for her, her spouse and he's he's near the end of his life and he has dementia as well as being sick, and she's, she was at it. We were at a meeting together the other day and she said you know, I'm going on a two-week cruise and my husband's gonna go to the lodge, the nursing home, for two weeks Respond and she said it's really hard for me to do. But she said I can't take another day of this. And I said you know you have to go. You have to go and you have to feel good about it, you know that he's safe and and you need to take the break so that you'll be available when you come back. And that's something that many caregivers Need to be reminded of through whatever Practice stillness practice they can find available, or something very simple like just sitting quietly somewhere.
Speaker 4:Thank you for that, gary. I think you know, based on my experience being a caregiver, when I was providing care for my grandmother, I think exactly what you said resonated so deeply, because you're right, we have to, as caregivers, we have to take that time when we can get it and where we can get it. Do you have any suggestions or some, you know, maybe quick tips or practical tips on how a caregiver may be able to practice stillness during their busy day?
Speaker 3:Well, there are, as I, as I talk a bit about in my book too. There there are many ways to find refuge. Refuge is a place or a person or a state of mind where you do find yourself able to get a break. Now I you know I'm working with one of your colleagues, razab, on a, an online course that we're going to see how this goes. But we're working on an online course where you can learn some rather simple breathing movements and Tai Chi movements. They're they're really not difficult to learn and you can do them in two minutes or five minutes or five minutes or longer, whatever you feel like.
Speaker 3:But I'll really what it takes is to remind yourself oh, I need to take a break here, and just Whether it's in the corner might sound funny, but In my experience, I've actually gone into the, the bathroom, and closed the door, turned off my devices and done a little breathing, if that's the only quiet place I can find. So it's really the general recommendation Is to try to be aware that you do need Some kind of a break in some form or another.
Speaker 4:Wow, gary, I think you've identified so many ways that people the really stillness is about being able To be still without the use of any tools, any resources. Just take a bit of time on your own to reflect and to do your breathing exercises.
Speaker 3:Yes, and or it could be in the form of you know, reading something, going for a coffee with a friend, that that gets you away. I know the Tai Chi club that I train at in Frederick and there's some of the folks there who are caregivers and they say just going to a class Once a week, twice a week, that's their, their way of Changing their environment, changing their universe, changing their story and being able to find some Peace and and just get a break of whatever form it takes.
Speaker 2:Your experience is so valuable in this area, gary, and you've given so many practical suggestions and thoughts in terms of finding pathways to stillness. I'm wondering, just building from what you've just said, if you might be open to sharing a practical or describing a practical exercise that our listeners might use as a beginner of a movement or some sort that if they were wanting to try to dip their toe into practicing a stillness in a more formalized practice at home.
Speaker 3:Sure, that's a good idea. There's a move called the wave. All of these tai chi moves can be done either seated or standing. I'll describe the seated one. That's the one we're using more often right now. If you're in a wheelchair, just try to sit in the can. All these are just guidelines.
Speaker 3:You make yourself comfortable, whatever it takes, if you're seated with your back more or less straight and turn your palms up, your arms by your side, with your palms turned up, and you're going to take a deep breath and raise your palms, raise your arms just up to shoulder height. Try not to lift your shoulders, try just to relax your shoulders, but breathe in up to shoulder height, turn your palms over and let your arms float down as you breathe out. The idea is you're trying to very gently coordinate your breath, going in as you come up and going out as you go down. Try again Palms turned up, breathing in up to shoulder height. Turn over, float back down as you breathe out. We can try it a couple more times. Just take your time, of course, if you run out of breath, just take another breath Palms up, breathing in up to your shoulder height. Turn over, gently, float back down.
Speaker 3:Just one more guideline. Try it one more time Breathing in Palms up, turn over. Try to feel like you're in water that's the wave part of it. Try to feel like you're gently pressing your palms into the air as you go down. Let's just do one more with that Breathing in Up, turn over, float back down. You should feel some relaxation, although not everybody does at the same time. What this does, by gently coordinating your breath with the movement, is you're breaking that monkey mind, you're short, circling it and you're bringing yourself to the present moment where stillness and peace and relaxation is. It may only last a short time, but the more you practice it, the longer it'll last.
Speaker 2:That was amazing, gary. Thank you. That's actually one of my favorites that I've learned from you, and you're right, it absolutely does short circuit that busyness in your mind, even just for a few seconds. There's a great benefit. Thank you very much for doing that. So I'm going to move.
Speaker 2:I'd like to ask you it's kind of a broad question now. We've shared with you that our vision for this podcast is to provide a resource and a place where caregivers and persons who are living with dementia can come to find resources and to find a space where maybe they can learn and receive a little bit of comfort here and there. And the name of our podcast, as we as you know, is redefining dementia, and so this is a question that we plan to ask every one of our guests, and we are very excited about the, the diversity and the answers that we know we're going to receive. And so, just thinking for a moment about your, your practice, your, your space in the world as it relates to individuals who are living with dementia and caregivers or care providers, and how would you, gary, like to contribute to the vision of redefining dementia?
Speaker 3:Oh, that's a very good question, I think. Well, first of all, in the earlier times, people with dementia were basically isolated and even warehoused and not treated very well at all or given medications all the time, restraints, all those things, and fortunately we've largely moved away from that. I won't say it's universal yet, but we've largely moved away from that more into the area of well, actually the area I talked about before, which is loving, kindness and compassion and self-compassion for caregivers, and it's to realize that dementia is a disease like many other diseases and a person with dementia is still a person, as you know very well from the work that you do. The person is always a human being with an inner life, with feelings, with a spirit, and so that's how I see my work and I've been very grateful to do some work with you.
Speaker 3:I'm just finishing a project with the Dementia Friendly Communities Project where I did a series of seated tai chi classes and I did that kind of work in person for about 20 years in a long-term care setting and actually with anybody in the community who happened to be interested and heard about what I do. So it's finding the strengths and the meaningfulness, or changing the story that we have about dementia and helping those who have dementia to change the story of themselves too. That's the big answer to that. It's being it's recognizing that dementia, as I say, is a disease and while there's no cure, there's certainly a lot we can do to help connect with people, love them and we can learn a lot from them as well, as I have learned a lot from those who have dementia and their caregivers.
Speaker 4:Wow, gary, it's obvious that you've spent so many years supporting personhood, as you shared. You know, maintaining individuality for people living with dementia and, as well, your background and experience and expertise in narrative has certainly shown through in that response. But what an enlightening, positive way to redefine dementia. Thank you so much. Thank you so much for sharing that. Maybe.
Speaker 3:I could I add one more thing that we didn't mention the term yet, but narrative care. That encompasses a lot of what I was just talking about. Narrative care meaning that we acknowledge that we're, as you mentioned earlier, we are all made up of stories and we don't just have those stories, but we go through life on our journey with those stories, and so narrative care is a conscious way of practicing with caregivers or those with dementia, listening carefully for those stories and communicating my way of stories.
Speaker 2:Absolutely, and you know, just touching back to what you know, to Ashley's comments, and you know what moved me as well as much as as your, what you shared about your vision for helping people through your work into connecting with you know how to care for themselves, was the idea that part of that work for you is also helping people to change the stories that they're telling themselves about their experience, their experience with living with dementia. So, not being judgmental, not feeling like that, there's a stigma associated with it. That's what really struck me about your answer to that question. Just, it's changing the narrative.
Speaker 3:Exactly and I mentioned also that term that you coined in one of your in a publication you did with us when you were a student this idea of a ripple effect, and I think stillness has very much a ripple effect If anyone practices it or tries to practice it or shares it. You can, of course, force anyone, but if anyone's interested and I think there are some rather simple ways of communicating that to other other folks and once they get a taste of it, then they'll share it with others as well. So I believe there is, just like there's a ripple effect for not so nice things, there's a ripple effect for wonderful, positive and healthy things, like this.
Speaker 4:And that's what I think is really important to me. So what a wonderful way to end our session before we say our goodbyes and our thank yous. Gary, is there any final comments or final thoughts you'd like to share with our listeners relating to stillness and mindfulness?
Speaker 3:I think we should be able to keep it up, I think with stillness. You know, as I mentioned earlier the the world is very challenging place right now. People say, oh, it's always been. But I think we have a series or a collection of things right now that are that are quite challenging for all of us in our daily lives and generally as a species to deal with, and I think all the more that we do need some form of stillness, practice, some ways of taking a break and finding a little piece in the storm. So I think all of us who are willing to share this or teach it or whatever you want, should just keep it up, keep up our own practice and keep sharing it wherever it's wanted.
Speaker 4:And so, gary, those are wonderful final thoughts, and it's so true the the further we can spread it by. You know, communicating, sharing, talking about stillness and how it can be so adaptable and and so tangible. Whether you're caring for somebody living with a family at home, whether you're supporting a family member, or even if you're working as a formal care provider, working in long term care or community care, it's a tangible way of being. I guess is maybe the way to describe it. So, thank you, thank you, thank you, gary. Dr Gary Irwin Kenyon, you can contact Gary via his website, pathways to stillnessorg. He's also on Facebook. He has a very active Instagram with lots of really great pictures of coffee that he shares and some amazing places that you can work while grabbing said coffee, as well as his Twitter and his YouTube pages, and you can purchase his book on pathways to stillnessorg. He also has a podcast which you can connect with via his website. So again, dr Gary Irwin Kenyon, thank you so much for joining us today and being very inaugural guest.
Speaker 2:Very humbled that you were willing to spend some time with us, gary, and I have a feeling there was many thoughts in both them. I'm sure Ashley's as well as my mind. We might have to get you back for future episodes. There's a whole bunch of topics.
Speaker 3:Anytime, anytime. It's a pleasure and thank you for inviting me to be the inaugural guest I hope it's good.
Speaker 1:What an opportunity to share the last 30 minutes with Dr Gary Irwin Kenyon. As I'm sure you noticed during our discussion, he embodies stillness in everything he does, even while recording the podcast, his stillness and sense of calm is contagious. We want to thank Dr Gary Irwin Kenyon for sharing his wisdom and years of knowledge on the topic of stillness with you, our listeners. I think one of the most profound learnings I've had through stillness is the concept that stillness can be what you make it and what you believe it to be. Stillness can be a warm embrace, an intense workout or breathing exercises. Now that you have a more deep understanding of stillness, I encourage you to think about what stillness means to you, what engages you in stillness, what brings a sense of calm and delight. Consider this and spend more time doing these things.
Speaker 1:The concept that stillness is individual and aligns with our stories and narratives we share with the world is a profound concept that can be considered for ourselves and those we care for and care about. Considering how each person's journey to stillness is their own and completely unique allows us to better understand how we can encourage stillness for ourselves and for others. I encourage you to relax into stillness on your own, with Gary's book or with his podcast, all linked in the show notes. Thank you for listening to this episode of the Redefining dementia podcast. We hope that you have found this information helpful and inspiring, no matter where you find yourself in the dementia journey, whether you are a person living with dementia, a healthcare professional, family and friend care provider, or a foreign ally, we aspire to shift the narrative and redefine what dementia means to you.
Speaker 2:This podcast was made possible by the New Horizons for Seniors program. Our music is written and produced by Scott Holmes. The podcast was produced by Jana Jones, and we'd like to offer a very special thanks to our affiliates at Lifelong Inspiration and, of course, to our amazingly talented and knowledgeable guests who gave of their time to share their expertise with us.
