The Caregiving Soul:

[00:36:56] Dannelle (Recorded): Hello and welcome to The Caregiving Soul. The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need, how we can better navigate the relationship, and the physical, emotional, and logistical complications we encounter as partners in care. 

[00:58:10] I’m your host, Dannelle LeBlanc.  

[01:03:20] [Music Ends]  

[01:03:20] Today we’ll be speaking with Teepa Snow. Teepa is a leading educator and innovator in neuro-degenerative care, with forty plus years of clinical and academic experience as an Occupational Therapist. In working with people experiencing brain change and those of us who help provide care, Teepa developed the Positive Approach® care techniques, which are based on her concept that “until there’s a cure, there’s care”. In addition to online and in-person education, Teepa’s organization provides support, materials, and resources via her site TeepaSnow.com. Her innovative approach and ability to connect with grace and humor is beloved by audiences throughout the world.  

[01:45:60] At its core this episode is all about communication and how to best connect with our loved one experiencing a neurodegenerative condition. When I was in a caregiving position, my father-in-law who had Parkinson’s had a difficult time getting stuck in his chair, or when walking. I observed how sometimes people would try to pull him, which would cause him to stumble. 

[02:13:08] This was a very stressful situation because he felt frustrated and felt the impatience of being yanked forward instead of just taking a breath until he was ready. I found a physical cue that was effective for both of us was through holding hands. We would rock from side to side and this connection would allow him the room to step forward when he was ready, instead of feeling pressured. 

[02:43:47] With Parkinson’s also being a neurodegenerative disease, the ability to physically communicate was a way to show acceptance and willingness to wait until he was ready to move. Teepa and I will discuss the importance of these types of cues and how to connect more deeply with those we care for. 

[03:05:67] [Music] 

[03:07:70] Welcome to Teepa Snow! 

[03:13:00] [Music Ends] 

[03:13:00] Dannelle: I am thrilled to see and talk with you again. I wanted to start out with, for any of our audience members who are not familiar with you and your work, it feels like your values are centered in everything that you do. Can you share with us what your three core values are and how they connect to your work in neurodegenerative care? 

[03:39:85] Teepa: I really believe that when we’re involved with others, it’s about the relationship, not about the outcome of care. The outcome of care will become what it is once we establish a relationship that’s based on mutual respect, and that requires true curiosity about the other person’s perspective about what they’re trying to communicate, about their state of being, about the meaning of how they’re saying, what they’re saying, what they’re doing. When people are changing neurologically, I think it’s really, really important to stay curious and not to become judgmental about, “well, she’s never done that before” and it’s like, “wow, she’s never done that before. That’s interesting, wonder what’s going on there”. So it’s a really different perspective.  

[04:36:36] And then the second value I have is to be truly compassionate when people are in really rough places because I don’t think people willingly choose to have conflict in general. I think classically they get into situations where they get stuck. And they can’t figure out how to get out without struggling with the other person or with the perspective of “she’s so stubborn, she just won’t let me help”. And it’s like, “wow, yeah, sounds like you’re trying really hard and they’re having really hard time with you’re trying.”  

[05:09:17] And then the third really strong value I have is that I think people should be empowered to do things because I think it’s when you feel disempowered people can say, “well, let me help you, can I help you? How about I help you?” That doesn’t feel good. It just feels like, if I wanted your help, I would’ve said something and you just keep shoving your help right at me and you’re telling me I’m incompetent. That doesn’t feel good. So those are the core values. It’s about relationships that are curious, that are compassionate and that empower people and I really believe if I work on those things, then those are the things that make a difference in caring. 

[05:45:69] Dannelle: Absolutely. They make a difference.  

[05:47:60] I think that it’s interesting that you described developing a relationship that is curious and the connection to compassion because we can get compassion fatigue, but if we have focused on the relationship, then that helps to sustain our compassion. So they go in hand.  

[06:12:41] Teepa: They do. And if the relationship is changing, one of my questions I’ll ask pretty early on is “tell me what you still like about the person you’re interacting with?” And when there’s a pause, particularly in neurodegeneration, they’ll say, “well, I love them and I promised I’d always do the care”. And it’s like, “Ooh, wow… ouch”. The interpretation on that is like how much obligation and sense of duty and I made this promise versus I really like being with the person, there’s something about this human being that draws me to them and I feel that there’s this value in being with, and when someone says, “well, I love him. I promised I always would care” it’s like, uh oh, we’ve got fatigue going on here. We have someone who’s really more than likely – I’m going to check it out with some curiosity – really missing the person that they used to have a relationship with and somewhat resenting that they’re spending time with someone that’s different and maybe even feeling a little like there’s a betrayal involved, or “I don’t want to be with this person. I want person back. I don’t like this”.  

[07:15:47] I’ve had some people say, “what is there to like”, and it’s like “ow”. “I lost my mom. I lost my brother, I lost my husband, I lost wife three years ago. I mean I’m doing the best I know how”. It’s like, “absolutely, I get that. So is there anything that you still enjoy about being with the person?” And they’re will usually be a long period of silence when someone’s in trouble. It’s real important to let the silence be. That’s usually when people can let go of the grief that they’re feeling and start really appreciating how much they’re grieving the loss of someone they’ve cared a lot about and feel compelled to be with someone that has taken this person’s place in some way. They’re really having a hard time with it, but they haven’t felt comfortable talking about that and yet watching and listening to the interactions, it’s frequently really clear that they’re burning themselves out doing this work without getting a lot energy or support from anybody. They’re just trying to hold on.  

[08:15:18] Dannelle: It’s so important to allow that silence, to allow us to recognize that it is grief. 

[08:23:62] Teepa then what happens? What do you see happen after the silence? After the recognition of grief? 

[08:31:32] Teepa: I’ll usually say, “wow, this has been really hard because you’re spending a lot of time doing this”. And then my next offer is almost always, if I’m with them in person, I’ll open my arms up to see if they want connection, a physical connection with another human being, and if so, I’ll offer a deep pressure hug and I’ll add a back rub to it because I often find that people who are in these roles haven’t been touched with care and love for a while. They’re so empty and they’re so longing for a touch and a connection, and that’s not what they get. And so often, just that offer, people will often then cry, and we need to allow that because that’s sharing the grief, and then it goes in half, and then we can move forward, because breathing comes next. Then we can breathe together, acknowledging how hard this has been, and much they do love someone.  

[09:31:59] So now we’re going to try to figure out what are two things that haven’t been as bad as they could have, or have been, or might be, so that we can start someplace where something isn’t as dark, isn’t as awful, as you’re letting it feel. Let’s see if we can dig up and then what’s the one thing you would like to change? What would you like to change if you could change one thing, if we can work on one thing, what would it be? Then people will start looking at what’s possible. And, for me, I’m curious, I know about the reticular activating system in the human brain which is – once you get a positive then you can see more positive. Once you get a negative though. Ooh, it’s easy to go down the toilet with that.  

[10:13:18] So, that really cool thing about, “ooh, if I get you to look at one positive and then ooh, it’s easier to find the second and then you start thinking. It sort of takes us out of the dark, really horrible place people can feel where “I feel like a failure. I feel like I’m not doing very good. I feel like he’s really difficult”. And it’s like, “I got it. So, let’s figure out what’s not as bad as it might be, as it was, as it could be. And let’s celebrate some of that” and not in a fake way – very authentic, but it really helps people start to be able to use their brain differently. And we know it’s the reticular activating system. It’s the attention getter.  

[10:48:49] Dannelle: And when we talk about dementia related care, the language we use is so important in framing our mindset, and “heartset”, for what is this very challenging experience. The positive approach to care that you created exemplifies this idea. Can you tell us what it is and how it makes a difference for family care partners? 

[11:14:82] Teepa: What I’ve heard from family care partners, who share back with me, is it changed our lives because I could now appreciate what my husband, my dad, my wife, what my person is doing now, versus what they can’t do anymore. When I can start focusing on what is possible, then I can get curious and interested on what can I do then that’s going to probably have a better outcome, that’s going to have an interaction.  

[11:49:07] So if I put my hand within their hand and we move toward their mouth together in taking a bite or taking a drink, then what ends up happening is they open their mouth automatically to take the food or take the drink. And it’s like, “oh, that’s a real different experience because it looks and feels like they’re doing this with me. They’re participating and I’m not forcing them and I’m not having to ‘take a bite mom, please take a bite, would ya?’” And instead it’s like, here you go. just bring that hand up together. And that’s the neurological connection. And then their brain goes, “wow”.  

[12:22:00] A number of people that’ll go, “did you see her? She was just doing that!” I was like “yeah, I saw that. How’d that feel?” And the energy just dramatically changes in those moments. So when I say, “instead of answering her question, when she says, ‘well, I want to go home’” because what we’re thinking is “I’ve got to answer her question” rather than “I’ve got to engage her in conversation to figure out what she means and where she’s talking about, and when she’s talking about, and who she’s talking about being with”. I’ve got to really get curious as a carer. “Where is she? When is she? And who does she want be with, doing what?” so that I can make a more effective connection. So that I can figure out how I can substitute in there something that will help her in a way that’s going to help me. Cause this is mutual, so it’s mutually beneficial.  

[13:14:03] And it’s remarkable how many times people said, “I wish people would tell me these kinds of things from the start, because nobody said anything about this stuff. They just say, ‘do the best you can. They always want to go home and you just have to tell them that they are home or lie to them or whatever’”. Well, how about we get more curious about what they mean when they say they’re going home, but you can’t say “well, what do you mean?” You have to figure out the new language.  

[13:37:66] It’s really exciting for carers, family members, or professional for that matter to have that moment of “oh”. When they try it they go, “you’re not going to believe this. When I knocked on the door she said, ‘come in’, instead of ‘who are you? Get out here?’” And it’s like, “you practiced using her first name. How was that?” “Oh, it was so hard.” “What did she do when you used her first name?” “Well she didn’t get upset and say, ‘I’m not your mother’”. “Ah, we’re getting somewhere”.  

[14:03:47] It’s really fun in a really healthy way for people to recognize, “I can do something different and something different happens” because I think people think this is such a downward spiral that you’re dealing with loss after loss, rather than change, and it’s not the same, and you got to figure it out as you’re going along. But I think it was some core understanding of stuff I think it is possible. And that’s what families tell us that it makes such a difference to have that understanding, that they’re not trying be confusing when they do this stuff. They simply have lost so many vocabulary words. They’ve got some core words that we have to work with. That’s all there is. 

[14:43:65] Dannelle: Two things really stand out for me – one is the core value of empowerment. When you described putting your hand in your loved one’s hand and taking that bite of food together, and how all of a sudden it becomes a completely different experience. And using curiosity, asking these questions, when mom, or dad, or whoever says, “I want to go home” then asking open ended questions to find out more. Those are both very empowering techniques and very creative techniques.  

[15:20:90] A lot of the skills that you’re talking about Teepa are really life skills in building a relationship with anyone, regardless of their cognitive status. We don’t learn how to do this. How can we use our creativity and curiosity to better connect with those we care for if we don’t have the specific list of skills? 

[15:42:78] Teepa: So, let’s get curious about, “is the person I’m with – are they more picking up on visual information, are they picking up more on auditory information, or is it they seem really interested in doing things with their body or their hands or their eyes?” If that’s going on that’s a real hint for me. If I want them to engage with me then I’ve got be in a space in a way that attracts them. If they’re looking then I want to be in a space where they can see me and what I’m doing catches their eye in a safe and interesting way.  

[16:18:83] So, if I want somebody to come eat and they’re sitting in the living room, I might actually bring a mug or an empty plate or something and I say, “time for lunch” and I make a motion of eating off that plate. And I give a “come along” motion with my hand. “Come on, let’s get something” which is real different than coming in and saying, “mom, mom, it’s time for lunch”. And this could be someone who, in addition to maybe dementia, is hard of hearing, and we lean over and we start yelling or we’re like, “stand up! Can you stand up?” And instead, I’m going, “ooh, ooh”. [Waves hand toward her]  

[16:58:18] So, it’s the energy, the enthusiasm, but the visual queuing where she can pick up on it – a face, and an intonation of energy. So, it’s really preparing yourself. If I know that this is a difficult transition for you – maybe you have pain when you come to stand, maybe you have really bad arthritis – then did I think about making sure you had your pain med about 20 minutes before? So, some of the creativity is in scheduling. I have to think through a little ahead. “Wonder if pain might be making it hard for her to want to come with me? Alright, well let’s front load it so that there’s a probability of less pain. And then let’s look at what could I show her or what could I say, or what could I do that might get her interested in doing something with me?”  

[17:47:07] Instead of viewing it as a task to completed, it’s a relationship to be built. And it allows us to get really creative then. I’ve accidentally dropped a Kleenex or two to see if the person would reach out and pick it up, and when they reach out and then I said “thank you”, and I left my hand just a few inches further than they could comfortably reach. Then they stood up to hand it to me and it was like, “great. That was good. Look how I did that”. And it’s that learning the art of what are they capable of so I’m in the right place to support, but I’m also using the desire we have to work with one another, be with one another, in a way that works for you, for both of us to see the benefit of it? 

[18:34:61] Dannelle: Some of what you just described reminds me of one of the statements of belief on your website, which is “making the invisible visible”. First of all, we all listen to the tone of how someone says something. I don’t care who you are, you can say the nicest thing, it can be the nicest sentence in the world like, “oh, you look beautiful today” but if you say it like, “oh you look beautiful… today” … [Laughs] 

[19:06:49] Teepa: “As opposed to how you usually look.” [Laughs]  

[19:09:62] Dannelle: It feels completely different.  

[19:12:06] Teepa: When we know that, particularly when we know language is compromised, continuing to rely on words and language to exchange information really gets both of us in a place of discomfort because what we end up doing without meaning to is changing our tone and often raising our volume and repeating. If you’re doing something and it’s worrying me, it’s like, “whoa, whoa, whoa, whoa, whoa, no, no, no, hang on”. Just as a receiver of that, it’s like, “what am I doing that’s making you so upset?” And it immediately puts me back from wanting to engage, especially if I didn’t realize I was doing anything wrong. I pick up something and I think it’s a container I should drink out of but turns out it’s actually hand sanitizer, it’s not a bottle of soda, but we have to watch it. It’s like “Teepa! Hey!” and you offer your hand to me, well if I’m starting to open a bottle of soda and somebody goes, “hey!” and offers their hand, well I have to pause because you’ve got to shake somebody’s hand who looks friendly.  

[20:11:43] And I paused the interaction that I was worried about without making it seem like you’re doing something wrong, or that that’s unacceptable, or you’re acting like a child, or whatever that unfortunate tone of voice we might be using, or that intensity that causes somebody to remember that, “I don’t know lot, but I know you’re not the boss of me”. All bets off and we’re not having a good time anymore. And so, we get a conflict brewing and then we’re really frustrated because I just didn’t want you to hurt yourself, “but I’m fine”. And then we go into a new scenario that wears both of us out, frankly.  

[20:50:82] I often say, “well, how’s that working for you?” but I have to remember to stay curious because I can’t imagine that it’s going well, but “how’s it working?” “Well she won’t do anything”. And it’s like, “mmm, okay. Well I wonder, if I if I were to do this to you, do you think you would want to be with me? And it’s like, “oh, well probably not, but I don’t have dementia”. And it’s like, “yeah. I wonder if she knows she does right now”. “No, she doesn’t.” “Okay. I’m wondering if maybe we want to try something different then?” 

[21:18:07] Dannelle: Tell us more about using that technique to interrupt potentially risky or dangerous behavior.  

[21:27:65] Teepa: It’s a really interesting thing that human beings often need time to process what’s happening before they can change what they do, because otherwise they’re on automatic pilot and it’s just sort of a habit we get into. And it’s a reflex. It comes from the primitive brain, probably more amygdalae than anything, where your instinct to survive, your fright flight fight, hide seek kinda stuff comes from.  

[21:52:43] All I have to do is go “Ooh” and your brain goes, “yeah?”, because “ooh”, sounds real different than “Ah!” [Gasps] And it’s sounds or vocalizations that human beings make, that it’s really interesting when I make it and I go, “oh!” Your brain automatically starts looking around for “what did she see? what’s going on?” I actually got you to disengage and engage with me because we’re group animals essentially. When one of the meerkats goes, “did you see that?” [Mocks looking around in both directions] Then everybody’s like, “I don’t know, did you see it?” It’s understanding how human beings like to be okay, and be engaged, if possible. 

[22:31:11] Dannelle: So, we can use an attention-getting sound like, “ooh!” 

[22:36:54] Teepa: Yeah. Or how you say someone’s name can be really incredible, like “Dannelle” [speaks in monotone voice] versus, “Dannelle!” [speaks in an excited voice] “Dannelle?” [speaks in a concerned voice] Now when I said it that way what’s the next thing that your brain wants to do?  

[22:51:30] Dannelle: “Is there something wrong?” 

[22:53:31] Teepa: Yeah. “What’s going on?” I’ve got you sort of curious. People almost always either look or say, “what?” I got you to sort of pause and look at me and then I can make a motion toward my mouth, “something to drink?” or “ooh, you got something” and I’m taking my finger and putting it to my teeth. I go, “you got something like, right there” And I’m doing it for myself but as soon as I do it your brain goes, “I got something right there?” Now you’re curious to look in the mirror. [Laughs] “Tell you what, let’s go check”.  

[23:19:99] And now I’ve got you up and moving to go check. Maybe it wasn’t anything, but maybe it was a piece of food. Maybe it’s a chance to brush your teeth after a meal, because I realize you’re not clearing your mouth so much. And you’ve got some what we call pocketing or some changes in whether or not you chew and swallow effectively and then increase the risk of swallowing problems.  

[23:40:96] Dannelle: Yeah. Teepa one of the other common challenges that we have with our care partners with neurodegenerative conditions is taking showers and hygiene. How can we use the pause or what other suggestions do you have for how we can connect to help our loved ones?  

[24:04:83] Teepa: It’s a great question and it’s one of the most common questions we get asked a lot and I get asked for certain. And so, the first thing I say is, “so what’s the magic? Let’s talk about the challenges of a shower as opposed to getting clean.” Because a shower is water coming out of somewhere and what color is water? It’s clear. All of a sudden I’m supposed to be without clothing, wide open, and have water come onto me and somebody controlling something or something happening and I don’t feel comfortable. And most of us aren’t real comfortable with the thought of becoming totally naked. Many of us are not that comfortable with our bodies to start with. Now I’m going to be on display for someone else who might be my daughter so the idea that somebody thinks I can’t do this on my own, or I know how to do it and when to do it, and why to do it, but actually I’m making mistakes. How do we move from this thing where I may know I need help or I may actually have no idea that I need assistance.  

[25:08:15] And those are two different circumstances, but the idea of showering should become a possibility, but not a probability for most human beings once they develop a neurodegenerative condition. If you have someone who still enjoys showers, I hope you celebrate that because it’s actually fairly rare. It’s an intense sensory experience. It’s really complicated. It’s scary because there’s this water on you, and then the air moves over it and it gets really cold really quickly, and then the water is hot, and then I have to figure out which direction to turn, and I don’t like my head getting wet now because then it affects my vision.  

[25:49:26] So frequently I say, “okay, let’s back away from the concept of a shower and let’s really talk about people getting clean because that’s really the main focus”. We want people to be clean. I mean, showers are great, baths are great, but getting clean is really the goal.  

[26:04:25] Let’s look at older skin too, because one of the realities for older adults, if we’re doing parent care, we’ve got to keep in mind, skin is drier and doesn’t have as much oil production on it, and it’s more fragile, and more thin, and it may feel more uncomfortable and that’s not about dementia, that’s about aging. Some people, not me, but some people get their hair done and to have somebody run water on hair that you’ve paid money to have cared for – No!  

[26:32:81] The idea of working with someone, where they are. “Tell you what, how about a quick wash up, cause we’re gonna go out” and now do I say to you, “do you smell?” Very few of us would be in a place where it would be comfortable for somebody else to tell me that I smell and I didn’t notice it. And yet, if I smell and I’m not noticing it, this is a really important piece of information for a care provider to understand. As a care partner, I’ve got to go, “wow, she’s no longer picking up on body odor.” That’s really important for me to appreciate because I’m noticing her body odor and she isn’t. And she also isn’t thinking it’s been that long since she did a wash up or a shower. And it’s actually been two weeks now that we can look back and know she hasn’t done it and yet she thinks she does it every day. 

[27:19:33] Let’s look at the time of day when I say, “hey mom, could you do me a big favor? I’m not sure if the hot water is getting hot the way it usually does in your bathroom. Turn it on because you’re getting ready to do your wash this morning, right? Cause this is about the time you usually do it.” I came into the cycle about the time that she’s just getting out of bed and her routine is to do her wash-up as she gets up out of bed, she gets her clothes, she goes in. And so, I’m giving a reason why I want her to turn the water on because in fact her problem might actually be, she doesn’t know how to initiate anymore. She skipped steps. And so she goes in the bathroom, but then she puts the clothes back on that were on the hamper that she had on yesterday, or she doesn’t wear pajamas and she actually thinks she just got up, got dressed, including a wash up or a shower and she hasn’t had either.  

[28:08:63] So, finding that way to interject as opposed to interrupt her process. So, I interject in there, because something’s keeping her from washing up. She’s always washed up before so I’m there’s some brain change involved here. So, trying to figure out how can I interject, but not interrupt, not takeover, not feel like I’m being mean, ‘cause if there’s a sense of invasion, then I’ll get a reaction to being invaded. It’s a dance.  

[28:40:15] And I talk a lot about dancing with your partner because I think you have to learn the steps of their dance first, and then you invite them into a slightly different dance because most of us dance solo in the bathroom. If you think about it, it’s totally illogical that somebody would suddenly take a private thing and invite us into it and yet, somehow, we’re expecting them to be fine with it. I’m not sure that’s real logical on our part actually. 

[29:07:63] Dannelle: I love that – we interject versus interrupting and you used empowerment as the way to interject by asking for their help to check on the hot water. So finding a way to help empower by asking for the help. 

[29:28:13] Teepa: “Mom, do you still have washcloths in your bathroom? Because I did laundry and I don’t know whether or not they got back in there.” It’s giving me permission to enter a space that I normally wouldn’t be in but it gets you into that space and you into contact with an object that signals that process. Now, “do you use body soap or do you use bar soap? I’m not sure I even remember what you tend to use. Oh, okay. You use the dove, right? Oh yeah. Now does that lather pretty well?” And what I’m actually doing, even though it sounds like I’m asking questions, I’m queueing you – what’s the next step. But it’s not like, “mom, you need to pick up the washcloth. Mom, you need to put soap on the washcloth. Now, are you going to start over on your left or do you like to do your right first?” Like I said, it’s learning the dance of being in somebody’s intimate activities when they’ve done it on their own. Honestly, many of us don’t know what the routine is if somebody falls because who watches their mom take a bath? But suddenly I’m supposed to help her do that and mom might be totally unaware or my husband may be totally unaware that I think he needs help and he thinks he’s fine. Whew. It really is this chance to be creative and most of us, unless somebody helps you through that, it’s not when you think you’re going to be creative, it’s just something to get done. So, I’ll just go in there and say, “here, here’s your wash cloth”.  

[30:53:21] Dannelle: You know what else that also does Teepa is – as an adult child, when you’re caring for a parent, one of the feelings, the emotions, that we experience is the loss of that parent-child relationship and learning that dance gives us an opportunity to step into that role as an adult child and reinforces their dignity and their personhood. 

[30:21:40] Teepa: Giving ourselves permission to laugh at bodies that are bodies – you’ve got to figure out how to get through this hard stuff, because if we can’t it’s going to be miserable for both of us and gets risky, frankly, in relationships, and actually sometimes in care situations, it can get pretty risky. Because I start feeling desperate to get you clean. And that’s when people will give really bad advice about holding people and let’s get two people in there and it’s like, ooh, she didn’t want one, I’m not sure two is going to set the stage for success.  

[31:54:46] Heaven forbid she’s had a life experience that she never told us about that this is calling forward. And it’s like, let’s try some other opportunities before we get to that place of feeling desperate. That’s a hard one, but that’s often when people think about showering, they’re so invested in that process they forget that sometimes life events in someone’s past, they chose to not share because at the time it happened there was a lot of shame or there was fear or it was not somebody that was unknown to the family. I mean, lots of things have happened to individuals by the time we’re talking about neurodegeneration that really, we don’t know their story. And to make assumptions about why she’s so hard about the showering, or being in the bathroom, or being alone in a room, or not wanting people in that space, there might be things underneath that, or behind that, that are really important for us to appreciate that it’s not just the dementia. It’s not just that there’s something behind that that we should really respect.  

[32:58:75] It’s called, informed trauma care. I mean, it’s that idea of being informed about trauma and really understanding that that trauma might actually still be present. Because it’s risky when we don’t know someone’s story, and they’re actively resisting what we’re trying to do, getting permission is so important. And yet I can’t ask permission the way I would have asked permission before. It’s like, “Mom, you broke your leg, you’re not supposed to put weight on it. Tell you what, I know it’s awkward, but we’ll drape you with a towel. And you can listen to all my reasoning, we can figure it out, we’ll make it work together because you want to be clean, I want help.” In this case, you think you are clean and it’s an erroneous thought, but you truly believe that you are and having someone in there is incredibly frightening and okay, we got to figure this out.  

[33:43:41] So maybe we do a wash up in the bedroom. We don’t go to the bathroom. It helps us think outside the box sometimes and when we talk about being creative, let’s try a different space and see if it’s less scary. Let’s try a different setup and see what happens because if we recognize something’s not working, then we have to take a step back and go, “okay. So what are my options here?” And I think when we care a lot about someone not smelling bad, being clean, having healthy skin, having a clean mouth, having a body that they would be comfortable in, then we do want to do what we can, but we have to responsive to their sense of what’s okay and what’s not okay for them. 

[34:21:30] Dannelle: You have the Creative Care Collaborative which is a newly revamped non-profit to provide local services in Hillsborough, North Carolina as well as global training and learning opportunities. Can you tell us more about that and how it impacts the culture of care?  

[34:42:81] Teepa: We’ve been looking for a way to do non-profit work for quite some time and the local adult day health program had closed down for COVID and it’s the only one in the county. It was looking really questionable as to whether or not it would be able to start back up. We really saw the importance of it. Plus, we saw people who would be able to come to this who could become teachers for other people – people who are living with dementia, various types and sorts of dementia, physical ability changes, that if they were interested and willing, they could become partners in care for helping other people learn, because it turns out a lot of people like to have value and purpose, and it’s not just coming to the adult day program in order for their families to go to work. That’s great but how do they fill a day with things that give them a sense of value and meaning? And because we do courses that bring people from around the world to learn about how do you do this thing that we’re talking about?  

[35:44:11] What we’re putting together is an organization in the county that will provide a variety of services for people whose brains are changing but those people will also provide opportunities for people to learn how to do things. They will be precepting, they will be coming onsite and trying some things out. They will be taking a course and then practicing what they’re learning with the folks that are part of this program. Adult day health but also respite programming and activity programming.  

[36:15:86] It’s not even labeled the way things are now because we’re really looking to create an inclusive community where people who run restaurants could come and learn, “okay so these are some ways that people can make choices on a menu when they can’t tell you something. So, if you showed them here are things that we have for today, which of these would you rather have?” They can actually let you know that. This doesn’t have to just involve families or just involve professionals. We truly believe that if we create this space and this opportunity, we can start to have people be more open to the idea of neurodiversity whether it’s autism, or whether it’s dementia, or whether it’s depression, or it’s mania, or it’s schizophrenia. Suddenly the fear of having somebody I’m caring for go out in a public space is so much less because it’s like, “well, hey, you know what I’m going to turn the music down because it looks like that’s too much. So you guys can enjoy talking with each other a little bit more”. “That’s really kind of you.” 

[37:16:07] Dannelle: Wow, that is fantastic! 

[37:19:19] Teepa: Yeah. We want a place where people are so comfortable. Be curious, would you rather have music on or off?  

[37:25:62] Dannelle: Yeah and it’s really about the education, teaching people the skills, ’cause it’s a small shift.  

[37:16:07] Teepa: Yeah. This isn’t rocket science but there is a commitment to caring about each other enough that we’re willing to try something different and be curious about one another and support one another and say, “if you don’t mind, could we sit outside? ‘Cause it’s hard in here?” “Absolutely, let’s see what we can set up.” Because it’s not like this is a rare condition. Nerve degeneration is happening a lot. We’re a community that has elders and has young people in it and has people with different abilities in it. We’re really wanting to commit to supporting one another. So that’s what we’re up to. We’re finding people that are like, “ooh, well, what can I do?” “Well, let’s try this.” 

[38:09:79] Dannelle: That’s fantastic. Congratulations and thank you so much for this work. It’s so important and you’re so committed to it.  

[38:18:89] I’m wondering what part of your life are you passionate about outside of this work, outside of the caregiving work and work with people with dementia? 

[38:30:33] Teepa: I really, really enjoy the environment in this area and so, working on pathways to walk, and places to ride, and spaces that are well-maintained, so folks feel comfortable going there and intergenerational stuff. So, working with kids and young adults so that they have a space too, ‘cause I think figuring out to build community is, in one way or another, art. My husband does blacksmithing in glasswork. My daughter does glasswork and artwork. I do basketry and outdoor art stuff. We love art, we love music, we love movement. We’re just part of a community that really believes – let’s figure out what each has to contribute. Let’s enjoy one another and then give each other some space.  

[39:21:43] Dannelle: Love it. Teepa what in closing would you like to share with our audience? What else does our audience need to know? 

[39:29:54] Teepa: I think when there’s neurodegeneration, there’s potential for a lot of pain, and some of that pain might truly be physical or emotional, but often it’s social and spiritual. In my book, building relationships based with true curiosity and compassion, and really, really wanting to empower folks, can really do a lot to take away pain, because people have purpose and they feel valued. I think if we could give each other that thing that people need, which is being invested in one another, and being supportive, and saying “good day or not such a good day?” and really caring about that answer. I know lots of people have recognized the importance of just asking and really wanting to know the answer, not “how you doing?”. I think that’s a really vital step in beginning. 

[40:21:47] Dannelle: We care. We care what the answer is.  

[40:24:35] Teepa: We do.  

[40:25:85] [Music] 

[40:25:85] Dannelle: Thank you so much for being with us Teepa.  

[40:28:21] Teepa: My pleasure. It was a joy. 

[40:32:90] Dannelle (Recorded): Thank you for joining our conversation with Teepa Snow. Teepa truly helps us understand how prioritizing our relationship with our care partner – rather than a specific outcome – can improve the quality of our caregiving experience. As we practice these compassionate engagement techniques, we recognize that focusing on respect for personhood and empowering communication also helps to improve quality and outcome of care. 

[41:07:49] In my conversation with Teepa Snow, I found the following thoughts to be most powerful:  

[41:13:82] 1) When caring for a family member with dementia, we often mourn the person they used to be. When we take time to sit in silence to recognize our grief, we’re better able to take the next step – to be present with our person as they are right now.  

[41:36:04] 2) Our tone of voice has a huge impact on how our loved one responds in difficult or frustrating situations. Taking a pause to deliberately choose how we want to interact, including a welcoming and affirming tone of voice can help strengthen our relationship. 

[42:01:10] 3) Teepa says that caregiving is a dance. When we learn our care partner’s steps first, we can adjust the dance to a rhythm that works for both of us. 

[42:15:80] Consider how the following actions could help address your needs as a care partner or care partners you may support:  

[42:24:47] 1) Stay curious and ask questions to help maintain compassionate engagement with the person we care for, especially when communication is challenging. 

[42:38:10] 2) Be open to doing something differently to help get better results – it may not be the original result or response we had in mind, but one that’s an acceptable alternative. 

[42:53:55] 3) Stay open to learning what the person we care for is capable of to better position ourselves to support and empower with less strain. 

[43:07:71] 4) Build connection and respect with questions rather than interruptions. 

[43:15:51] For more information on Teepa and the Positive Approach to Care, check out our show notes. Every episode of The Caregiving Soul has a page on EmpoweredUs.org, where you can find the extended show notes, including tips and takeaways, transcripts and relevant resource links. If you’d like to share your own tips related to this topic, or connect with us, visit the Empowered Us contact page, or reach out to us on our social channels.  

[43:49:67] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts. 

[44:05:17] And remember, the right care includes care for you. 

[44:15:52] [Music Ends] 

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