The Reality of Caregiving: Culture, Family & Technology

"I wanted to make the most of it." - Dona Kim Murphey

Caregiving is never just about one person, it’s about family, culture, and community. Natalie and J.J. sit down with Dr. Dona Kim Murphey, neurologist and caregiver, to explore the deeply personal and often unspoken challenges of caregiving.

From cultural expectations to the emotional and relational toll caregiving takes, this conversation dives into what it truly means to care for a loved one—especially from a distance. Dr. Murphey shares her journey shaped by her family’s experiences with illness, offering practical strategies for caregivers, the power of micro moments of self-care, and the evolving role of technology in making caregiving more manageable.

🔹 Key Takeaways:
 ✅ The impact of cultural expectations on caregiving roles
 ✅ How technology is changing the way we care for loved ones
 ✅ The emotional toll of caregiving & ways to protect your well-being
 ✅ Micro moments of self-care that make a big difference
 ✅ Why community support is essential for every caregiver

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Website: PrognosUs.com

💡 Whether you're a caregiver or supporting one, this conversation is for you.

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#Caregiving #CaregiverSupport #FamilyCaregiving #Neurology #ElderCare #CulturalExpectations #SelfCare

Transcript

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Hey guys, it's your favorite sisters with the confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate, be inspired, leave with helpful tips and resources, and of course, laugh. Now, let's jump right in to today's guest confession. Hey Jay. Hi Natalie. I've missed you. You know I miss you too. We haven't recorded in a little while. I need to tell you something. What is it? I need to confess before we get started. What are you confessing? So I told you something the other day but I didn't tell you the whole story. That time that you peed on yourself? It was not that time. So the other day I told you that I was a little frustrated because mom called me 11 times in three minutes. That is true. But I didn't tell you the whole story. What happened? Well what she said was that I said mom you just called me. 11 times in three minutes. And she said, I thought I was calling Emily. And I didn't continue my conversation with mom. just simply said, if you'll just give me a minute, I'll text you Emily's number and then you can just press the button and call her. You know, notice you didn't ask for me. you know, we should do a podcast today. We should. I just, I would confess. feel so much better. Sorry, Emily, that I'm straight to you. Sorry about that. You know, but we do have an amazing guest today. I am so I know I didn't sing us in but your story was actually really kind of funny and I think it filled the gap. Mind the gap. It's like we're in Europe. All right. Hey, you know what? I want you to tell us about our guest because she is amazing and she has an extensive history related to caregiving. is it is quite an extensive history. So today we have with us Donna Kim Murphy and Her first comment was that she is driven by values. And she says it shaped really who she is. Her history is what you were talking about. So here's her list of people so far. Father's mother, mother's father, mother's mother, father-in-law, adopted father. And I think I got all those, Donna. So there's probably more. She just takes care of the world. taking care of the dogs, the cats, I know. So this has really been, I believe, I'll speak for her, transformative on her life because Donna is a neurologist, she's a neuroscientist, she's a support caregiver, community health worker, community organizer, advocate. She's taking care of everybody. Honestly, she should come take care of us because clearly we need some She is now working on world peace. Donna, we are so happy to have you here with us today because like Natalie told you before we started, we work with a neurologist who we love because of Mom's Park. We love you, Dr. Barbeau. Yes. So we are excited to have you here today because you have been on a road for a while and for these many, many people. So thank you for joining us today. Of course, it's great to be here. So I always like to say, I start the same way every time. Let's start from the beginning. So you were born and then skip to the part where you started. Tell us a little bit about your family background. So that way we kind of understand a little bit about you, the dynamics, and then how you got, how that first entry into caregiving, and then let's go. Sure. So I am Korean American. I'm second generation, meaning my parents immigrated here in the seventies, the two of them from South Korea separately. They met here and I was born in the late seventies, had a couple of siblings. we were very close with our extended family, including our grandparents, aunts and uncles, and all of our cousins growing up in Houston, Texas. The first time that I encountered this kind of, I guess, caregiving apart from what happens within a nuclear family, right? Because that, course, was always there with my mother and the children in the family. Caregiving, I think, due to illness, right? That was with my father's mother when I was in elementary school. And I think I had not... great consciousness about that, other than that it was maybe uncomfortable, a little bit scary. I did observe how difficult it was for my aunt who was the primary caregiver. The expectation in Korean culture is the eldest son becomes responsible for the parents, like traditionally. But of course, And there's a gendered aspect to that and that is that it's not actually the eldest son, it's his wife. Yeah, I was getting ready to ask that. Yes, and so it was her mother-in-law who really she was caring for. My mother was the support caregiver in that context and that lasted for about 10, 12 years. So I remember that I was not very involved in any kind of real caregiving capacity because I was too young. The first time that I actually became actively involved was as a support caregiver to my mother's father. And that was maybe a good 20 years, 15 to 20 years later. Let me ask you real quick because I'm an interrupting cow. I just moo all over the place. What birth order are you in? I'm the first child. see, JJ is the first child. Yeah, see, this is what we were wondering. I always, always love the question about birth order because I think it makes a difference. does, Donna. It does. We have to keep people in check. Yeah, know, zip it down. And so, let me ask you this. Your aunt who cared, our aunt cared for our grandmother. She actually moved in with my grandmother after my grandfather passed. And so, was she able to remain in the home, like within your old family? For us and our family, was never, like no one went to skilled nursing or assisted living. Assisted living probably wasn't even in existence at that point, but skilled nursing and rehab. So was that kind of like family took care of family and everyone passed within the home kind of, home setting, the home community-based setting? Yes, so for my all of actually everybody that I've been a to, I think the understanding whether explicit or implicit is that we will always care for them in the home. For my grandmother, that first person with whom I had experience with this disease, which is dementia in our family, that was very much understood. My aunt cared for her in her home the entire time. And my mother and we would go visit to kind of give her relief. Yeah. Okay. So fast forward. Do you think that that observation with your aunt and her kind of pushed you in a direction for your career? Do you think the dementia and you going into becoming ultimately neurologists and neuroscientists pushed you in that direction? sure. mean we also have epilepsy in the family so that's not the only brain disorder. We have migraines that run in the family as well. So yeah, mean it was devastating from what I could see. This person who used to travel around the world with my uncle, he would actually go from place to place with his job and he moved his family around including his mother. And she would visit us, she was funny, she was very energetic. And that person then became someone with whom I could not have a conversation. She was very confused all the time. And yeah, I I wondered what was happening, whether we could do anything about it. And I think that definitely planted kind of the seed in my head that this is maybe something that I want to do something with, right? It wasn't clear to me when I was that young what it was. Yeah. So fast forward going ahead to where you come into it in your 20s, what? Yeah, that's where I wanted to go. Because you said it was about 20 years later. So I'm thinking you step into it next. Well, like you step into it. But are you through med school then? Because I'm thinking, wait a minute, this timeline is like 20s. Yeah. I'm like, where are you then? So the next about career. Yeah. think when my grandfather started having symptoms, and it wasn't really spoken about explicitly, I don't know that it was even ever named with him until the very end, that he was having problems driving. He couldn't drive anymore after a while. My grandmother became his primary caregiver, but they were kind of isolated. They lived in their own house that was about half an hour away from their kids and their grandchildren. And so, you know, we would see them occasionally until we made it intentional, right? Like that we would see them regularly because we knew something was going on. And at that time, I think I was, I think it was actually through med school. So maybe I was in residency for neurology. And I, you know, really kind of took it upon myself because I knew that time with somebody who we really loved was going to be limited in terms of like his ability to consciously engage with us and I wanted to make the most of it. And I wanted our cousins to be able to make the most of that. The generation above us, their children had already been organizing, right? Like they had already kind of modeled for us what it looks like to care together for your parents. And the people who were closest geographically to my grandparents were the ones who were of course showing up more physically. and to support them, whether it was to take them to the doctor or to just show up to help them around the house, whatever it was. And the people who were a little bit further away would come in episodically and or they would support financially. seeing that all of that was happening, I kind of was wondering what are the gaps here? And it became clear that without them being able to drive, and my grandmother never really learned how to drive because my grandfather drove her everywhere. And so when he was no longer able to do so, they were kind of stranded. And I really worried about their isolation. And again, I viewed this as an opportunity to just spend more time with them, right? And so I organized my cousins and there are a bunch of us who live in Houston. And we have like a spreadsheet. We were communicating with each other in our group tag, but it was taking them to and from church, who was going to go visit them to take them out to eat once in a while. We would sometimes visit them together. Yeah. Well, and you're thinking about technology at that point, because you're just a touch younger than me and considerably younger than JJ being the oldest. she's born 73. I don't want to point that out to everybody. It's OK. Go ahead. You did. OK. Oh, I'm sorry. I didn't realize that. So but if we think about like because we were all kind of in college around the same time and like in our we're similar in age because you're a child of the 70s as well. And so. think about our cell phones that we had. about how we, the technology we had, cause I think about the technology we have now, like 20 years later, 30 years later, it is leaps and bounds different. So I like that you said we use a spreadsheet. Are you all texting? we like, what's the technology at that point? Cause I'll be interested to kind of walk through technology and how you've used technology as well. Cause your, your family sounds very communicative. Sorry. You all are very much communicating with one another, which a lot of people do not do. it is cousins, like we have 11 cousins. We are all, we love our cousins. And the fact that it is, this is like a team sport. So tell me a little bit more about that. Yeah, you know, that's been super interesting recently because I've looked into this work that I do ultimately, right, which is to support family, caregivers of people living with this disease. I've looked into a lot of the newer technologies and it really is about like, especially if you're talking about intergenerational collaboration and communication, it's really about like what works for the group. And that can be so dependent on the individuals in each group. And so for us at that time, we didn't have all of these tools. And so that was really what we were able to use in order to organize and communicate. But I will say that even now for all of us, going through this again, which I anticipate we will be doing with our own parents generation. I don't think we actually would use these newer tools just because we're accustomed to the older ones. a spreadsheet. I'm not gonna lie to you, I like Excel. Yes! So that's interesting. Go ahead. No, I was just going to say that adoption, think, is a big thing. And I don't think that we would be comfortable, many of us, using some of these newer apps that are really snazzy. They have a lot of different functions. And people have been thoughtful about their design. And yet, I think they're maybe too complicated. And we wouldn't use that. We would just use our group text and probably now a Google spreadsheet as opposed to an Excel spreadsheet. You've really just got you've gone up now to Google spreadsheet. I know I those have Google spreadsheet. You know, it's so funny that you say that because, you know, I'm dating our podcast, but last Friday was National Caregiver Appreciation Day. And on the Today show, they do not sponsor us. So you can if you'd like to today or NBC. But but they had a segment about caregiving and how do you support caregivers? and they talked a lot about technology and there was an app that is, and it's an AI related. Now I'll make sure to put it in the show notes, but it was an AI type related app that they said, you can just do this and you can just speak into it and it can help you with, you know, your caregiving and coordination. And I actually thought to myself, I'm like, that sounds really interesting, but I'm 49 years old. I said that out loud. And I don't know that I would use that. We don't use that with our mom. And so I totally relate to how you say, we like our Google spreadsheets and text group, because we are a text group. We're sisters. are. And we are all, and we include memes in there to help really emphasize how we feel about it. And so it's interesting that there's so much technology, but does the technology, and I don't know maybe if you found this in your practice, do you think some of the technology may scare off some folks? who needed to keep it like my basketball coach, keep it simple, stupid, kiss it a little more. Yeah, I don't know if it scares them off from actually doing the work of collaborating and being kind of more community oriented in this approach to caregiving. That I think is there or it's not there. Not in the AI technology. Using AI. yeah, I don't know. I personally have a lot of qualms about AI. I don't know if like, for instance, all of my cousins have that same kind of consciousness about like what it is, how it's been built, how it works. But yeah, for me personally, I don't really care. I try to avoid AI often. That's okay. But I understand that it can be helpful. But I think even without AI, like I said, like some of these apps, which I think are great for people who grew up with the technology, right? Like they grew up with social media, they grew up with all of these different apps and that's comfortable for them. For me, it's really too much. It's a little overwhelming. And I'm like, I'm doing all of those things, but I'm doing them in my way with the tools that are comfortable for me. that's what really people have to be aware of, especially when we're talking about intergenerational coordination. getting it done, Donna. That's all that matters. That's what I say. As long as you're getting it done, that's all that matters. totally agree with that. I can't believe we're already time for a we're to jump to a break. Okay, we're going to jump to a break and then we'll be right back. All right, everybody. We are back. We're talking a little bit about technology with Donna. We've only gotten through the second person, so we're a little slow here. But they're coordinating with our cousins. So that I love and I feel like, and I know how this works with my mom herself. is when you talk about your group, your people, going and making sure everybody gets to go to church or you're going out. I feel like with dementia, and we have not experienced that yet, although we feel like we're in the early stages with our mom. But it sounds to me like that is, to keep that brain active, that is very beneficial to keep them active and going out. And like you said, is something, so your next caregiving experience, who was that with? Like you've got a couple more, but there's dementia that continues in these caregiving experiences. Right, so the next thing that became clear to us is that when my grandfather died, my grandmother, who was his primary caregiver, was having some issues herself. it took a little while, I think, for people to realize that because, again, they were pretty isolated. And when he passed away, she insisted that she was going to continue living alone in that house. wow. And was, you know, maybe half an hour from the rest of their children and grandchildren in other parts of Houston. And so it took a while and my mother and I think some of her siblings began to recognize that she was saying some things about where items were around her house or where she couldn't find items around her house and had kind of invented some stories that sounded a little strange to my parents about, or to my mother and to her siblings. about where those things might've gone and who was responsible for misplacing those things. And so that's kind of where it started. And then she began over time to have falls and to lose a lot of weight. So she wasn't eating. Actually, I had a couple of aunts living in Dallas who would come every few weeks and they would bring a bunch of delicious frozen meals that they had made from scratch. and they would put it into her freezer. And by the time they moved her out of that house, which was several years later actually, because she refused to leave, her freezer was full of these meals that she never had eaten. And that explains why she, I mean, she lost, think 40, 50 pounds. She lost a lot of weight and was super fragile when she ended up leaving. And she recognized herself actually after having had a few falls that this was no longer safe for her. And this was after having tried a lot of things to keep her in her home because that is what she desired, right? So they had people checking in on her. think my aunt was calling her every day. They had spoken with the neighbor to make sure that just in case they couldn't reach her, the neighbor had a key and could get in. if anything happened around the house where nobody could get to her quickly enough, the neighbor was also there, right? They had, I think, given her an alert so that she could use the alert in case she had fallen and she couldn't get get up on her own. And I don't remember if they had installed cameras. They may have done that also. But they did a number of things to try to extend her time to be more independent, which I think is the right thing to do. eventually, like I said, she herself recognized this was no longer safe. And so she ended up moving in with my parents. And this was actually the moment that my parents, which was complicated, think, emotionally for my mom. And she probably still grapples with this. And that is that she had a very different vision for how she was going to spend her retirement. And now has become the primary caregiver to her mother. And she also just as a function of her being the woman of the household and us being Korean of that generation, she is also caring for my dad, which is something that she's really always done. And I've really not noticed it until now. It's kind of an additional thing that she's having to carry. above and beyond what she's doing for her mother. Yeah, let me ask you a question because we've talked about with so far We're like talking about these the events themselves Is there ever a moment because it sounds like you've got a good relationship with your mom and these cousins Is there ever a moment where you all have said to yourselves? What is going on like why does this keep happening to us? Because it's for your mom. It's interrupted her and I don't not interrupted, she's had this. It is an interruption, respectfully. It's not a disrespectful statement, but she thought she envisioned her retirement differently. And for you, you know, I know that you've got your career and it's not that it's, it's not, it is kind of interrupting and it's not, but it's taken away time where you thought, okay, I'm going to be doing this. And you really have, you feel responsible. Okay, I need to go do this. And I want to make sure all these doctor's appointments are going well. Has there ever been this discussion that's like, What is going on? Why is this my life? For any of you all had that discussion with your family. Yeah, it's interesting. haven't explicitly had that discussion, but my mother had this viral TikTok moment, actually. When she shared with me, I was recording her, she shared her story or her understanding of how she's ended up in this position. And she kind of reflected on this thing that happened to her when she was a baby. Her mother shared with her that Her water broke prematurely and for like a couple of days she didn't deliver and that's super dangerous for the baby and for the mother. This was in kind of like, you know, kind of undeveloped Korea in the 50s, right? And so, and they were, you know, they were poor. know, so like those conditions I think were probably not ideal for like a safe delivery in those circumstances. And my mom talks about this as like, she feels, and she's a very religious person, she feels that God had something in store for her. She lived because she had some purpose that she had to fulfill, and she feels that maybe this is what that is. And so as hard as it is for her, and as much as it doesn't fit with what she had envisioned for her later years, she's kind of taken it on, right, and embraced it. And I see it in the same way. Like I think that a fulfilling life is one filled with purpose. And I think depending on what your circumstances are, that purpose may be very different kinds of things. depending on whatever point in life you're at, that purpose may be different, right? And at this moment and probably for the last couple of decades, I think it's become clearer and clearer to me that I have a purpose that has to do with, I think, really kind of building community, leveraging community and family to kind of address some of these challenges, which we, I mean, at some level you can control because there are modifiable risk factors of this disease and at some level you can't, right? And I don't know that it's very fruitful to talk about how unfortunate it is that we can't control those aspects. I think it is much healthier to think about what we can do, what we can do together, how much we can preserve in terms of the quality of life of these individuals who are directly impacted, and also what opportunities that creates for us as a family. I think that's true because I think your one, I think your mom's spiritual gift is is very much service and, you know, really mercy. And if you think about spiritual gifts, if she if she feels like this is her purpose, I love that. And it sounds like your family dynamic, though, has been one that's been built on an attitude of serving one another and supporting one another in with kindness and love. And it's not just the nuclear family, it is your extended family. It's not, don't, you see yourselves well beyond your brother and your brothers and sisters or sisters, whatever, your siblings. You see that as a broader responsibility and your role influenced, you know, you're a neurologist and you're, you are an As we've said earlier, an advocate for an advocate. You're caring for the caregiver. And that's what I hear your siblings doing and your cousins doing is like, we're surrounding this person to make sure they're taken care of. Let me ask you a question. You have this whole personal thing too. Like, I'm assuming you, I know you have children. And so how does this whole, we're caring for each other as a family, but you're, you have a practice or you're in the field and you're trying to make change not only for your family but also the community which I love. I think that's important. I think we're here for more than just ourselves. But how does this care ripple effect into your personal life and your relationship maybe even with your children, your spouse, with your mom, your parents, that sort of thing. How does that ripple effect? Yeah, I think so, not just on my side of the family, but my husband also, his father has now advanced dementia and he and we visit his father monthly, if not by month, like every two weeks. Right. So every one or two times a month. And I think. My kids have just kind of been witness to that for many years and they they've seen it modeled. We don't necessarily have explicit conversations about what their responsibilities are or expectations like that. But they've seen it modeled, like how important it is to each of their parents, my husband and myself, to be really involved, even though actually in both of our cases, we are support caregivers. His brother is the primary caregiver in Austin. they see every aspect of that, right? Like they see kind of how the expectations that are unspoken can be uncomfortable, that it can be complicated in terms of family dynamics. They see all of it. That it can be inconvenient for the individuals who are involved, that it can be expensive. They see all of this. I think what I want them to know and I think they know is that I don't have actually some expectation that they will care for me, for instance, or necessarily that they would care for their father. I have the hope that they will have learned and that they will have kind of internalized these values of care. within our family and that extends not just to the person who is like one, you know, like super close to you, like your nuclear family, as you mentioned, but it extends to people in your extended family. And they've seen that in both my life and also the way that my husband lives his, that that's also true for other people in our community, right? Like our neighbors, other groups of people with whom we affiliate, they see how we model care in all of those circumstances. And so I think it has definitely touched my life in that way. We have very candid conversations also about how different people handle this disease, right? In some places, it's actually acceptable. It's acceptable to have kind of like, what is it? I don't know what they're calling it these days, but like that an individual can choose for themselves to not continue to live with this disease, right? Right. We've even had conversations about that because there are parts of the world where that is OK. I think it's not really OK in most of the United States. But I think it's important to talk about, to think about, and to know how we feel about those things as individuals and collectively. Yeah. And so I love that you have open conversations. I think that's really important. Do you think that, and I think I know the answer, do you think you've gotten better at being a caregiver based on every end of, like, are you building on these experiences and thinking, okay, this time I'm going to do this a little bit differently? And this helps me to make the care experience, I hate to say like a little less painful, but a little less painful, cumbersome, intrusive at times with my personal life so that I can balance care and work and personal and in the end. Yes, for sure. Like I think that it has having so many people impacted by this disease and wanting to be involved actually at some level with all of them. It has forced me to really like prioritize to schedule rest and also to ensure that that happens for the people who are the primary caregivers, right? Whether that is like my adoptive siblings in Ecuador or that is my mother. or that is my brother-in-law, right? Like trying to do what we can to give them some kind of relief. And that relief looks different for each of them. Like they desire different kinds of support in that way. But I think being, yeah, like kind of conscious of that and honoring those things for each of those people I think is super, super important. I have learned that. I think from our caregivers actually in the communities of support that we create in this social impact company that I have, I've also learned from them. There are ways within your day to actually just take a few minutes in order to kind of ground yourself. And that's also been important to me because I always saw it as like, You have to be like stepping away, like you actually have to like, and I think that it, that's also important, but there are ways to actually kind of be where you are and just kind of breathe and yeah, have that respite even in like micro doses, which I think is also very important. I do love a micro dose. We were talking about that the other day too, because it doesn't mean you have to have, you know, half a day, days, weeks gone. You can actually take 10 minutes and just have a little refresh. And we're going to come back to that because I want to come back to that as soon as we take this break. All righty then. All right, everybody, we are back here with Donna. Natalie decided she was going to call it out. So you said you're going to jump back in. No, go right ahead because I teed you up. You did? Did see that? T-Job. I was going to go to something. go ahead then. We'll come back to it on our 60 questions. Okay, so here was my question because you mentioned an adoptive family in Ecuador. now I'm a long distance caregiver, but you also have another long distance supportive caregiving relationship. Quickly tell me about that because this is another person that is ongoing care for you. Right, so I'm not super directly involved in this person's care. I guess maybe about 10 years ago, well, I guess I should preface with, I know this family because I visited Ecuador and lived with this family through a program. Like it was like a kind of a youth leadership cultural exchange program when I was 16, but I've been in touch with them since I was 16 and they visited me, I visited them multiple times. And so, About 10 years ago, they reached out to me with some concern about my adoptive dad's behavioral changes. He had become kind of delusional about my adoptive mother and being unfaithful to him. had kind of fixed thought that, or fixed belief that she, everything that she was doing had something to do with an infidelity. None of which was true. And it was super oppressive to her and they were trying to figure out what was going on. So I was from a distance just trying to kind of advise them, you should go to a neurologist, you know, like they need to look at these things. but I was like very, very peripherally engaged with it. I think at some point they asked me about medications. So I had conversations with them, like as I had mentioned before, I think in all of my support caregiving roles, everybody has at some point utilized me as kind of an internal consultant because I'm medical person, right? So they were asking me about that. I think as his disease has advanced, I took my my children to visit my adoptive family for the first time a couple of years ago, like right before they went off to college. And I wanted them to know the place they live in and who they are. And his dementia had already advanced pretty substantially by that point. And there were difficult things about this because one of his symptoms that was super prominent, now a little bit less so, was hypersexuality. So he has front to temporal dementia. And this was uncomfortable. You know, I have two very like kind of progressive young feminist women children. We love them already. And they just kind of viewed this as like inappropriate. And I had to kind of, you know, just kind of reiterate with them that this is his disease. Like, yes, there is something about this that has to do with culture also. And my sisters there will tell me that. They're like, yes, we have a super machista culture, which is like a very patriarchal culture. And some of these beliefs are really rooted in that cultural backdrop as well. It's important to acknowledge that. think my kids, at this point, they understand that. I don't know that they understood that several years ago when I first exposed him. I wanted them to meet him. I didn't care that this was a symptom that he had. I I cared and I didn't. I was like, I think you still need to know who he is. And you can have conversations with him. And he can be very caring and loving even apart from that symptom. so anyway. Yeah, so I've been now, I just got back from Ecuador. I've wanted to actually help, you know, even if it's like a week or two, right? Like I wanted to help in some capacity. And so I try to visit, I try to spend time with him and engage with him. think the people in the household there, they also live in an intergenerational household with a couple of my sisters engaged in his care, one maybe more so than the others. And, you know, while I'm there, I try to be the person who's engaging with him because it can get, it can wear on that. And so each little break, I think that can be helpful. And I also think for him, it's really nice. Like at this point, I think he does kind of recognize me, remembers me, even if it's not explicit, like he remembers kind of the feeling of who I am when I'm there. And so that's really nice for me too. It's, I think that, you you can't do this work sustainably unless you see yourself as benefiting in some way. And I am benefiting from his, again, like kind of love, care, warmth, and the other stuff, you know, I just manage. Yeah. Just as my sister do, right. I love that. Yeah. You know, I want to go back. I'm going to go back to my question. Go to it. And I want to talk about it's interesting. I hear you saying I'm going to meet the caregiver where their needs are, not where I want to do it. That's what I really like. I'm going to come in and save you. That's what we, JJ and I thought we were going to do for Emily when we were providing respite and we were totally in over our heads. And so, but really tell me what are some recommendations that you would give to support caregivers, like really, truly. Like, you know, if you have a caregiver of a caregiver, like what are the things, how do you approach them? How do you have that conversation? Because a lot of caregivers do not even know what they need. And they're just like, or the person they're worried they won't, they won't allow the primary caregiver to allow someone else to come in. So what are things that you can do in the moment and then for yourself as a caregiver, and then what are things that other folks can do to come in to support caregivers? Yeah. Gosh, I think I'll answer the latter first. Sure. So what you do as a support caregiver, right, in order to support caregivers who might have different kinds of needs and desires, right? I think that the best thing to do is to ask if they cannot give you an answer because they haven't thought about it explicitly themselves, then I think it's to observe and to suggest, right? say, I've noticed that you're running around and doing so many things. Every day at the end of the day, you have a pile of dishes here. I'm gonna come in, like I say, if you live close by, if you're a neighbor or something, a neighbor and a friend, I'm just gonna come in every evening and just like do those for you, right? Like you don't even have to. That feels good. Same as it. any attention to me, right? Like, I'm not asking for that. I'm gonna do that. I do hesitate to actually do something without people's permission because that has happened in our family before where it is clear, I think even just kind of objectively, like certain situations are non-hygienic and like, you know, like something needs to be done about it, but still people will get offended, hurt that like you intervene without permission. Yeah. I do think it's important to have the conversation. But I do think it helps to actually just suggest because otherwise people often, as you said, they don't know necessarily, or maybe they feel a little bit embarrassed to ask you to do that particular thing. And so I think, you know, that that can be really helpful. Don't want to be a bother. What about those moments you mentioned a couple of those micro moments of being able to care for yourself when you can't step away, when you feel like I'm the primary, I'm here, I don't have shifts, I just live here. And so what are the things when I can't get away that I can do in the moment to help almost re-regulate yourself, get re-centered, find yourself again? I think this I've also learned from our caregiver community, just stepping into the other room, right? And not in the same room as your loved one, just for a few minutes, right? It's safe to do so in almost all circumstances. So stepping into the other room and just kind of breathing. like slow breathing, boxed breathing, like, you know, there are lots of different kinds of breathing exercises that you can do. Really, I think closing your eyes is super important and trying not to have a lot of auditory distractions also for that time, that short period of time is super helpful. And it's interesting because I think, I don't know, I think I believed for a long time like that it can't be that helpful, right? And for some period of time, I thought you can do it simultaneously as you do other things. Right, like one time I think I was driving and I'm like, I'm going to do breathing exercises and try to relax while I'm driving. You cannot do that. You cannot multitask. Definitely do not close your eyes. No, no. with your eyes. That's even... don't... The exercise of trying to relax while you're doing something where you actually have to be engaged in various ways in terms of your sensory systems, right? Like, it's not gonna work. So you really have to be deliberate about stepping away and actually deliberately, know, closing your eyes, you know, having not a lot of distractions otherwise, sitting there in calm and stillness, and then doing those exercises very intentionally. And it can help within, like, I think a couple of minutes to feel better. Mm, yeah. love that. also like lotion, putting lotion on, very easy sensory type things, especially anything that's scented. know that eucalyptus, know, or actually orange, the smell of orange is actually very, actually can lift your spirit. So if you're feeling down, if you go and smell an orange and if you have it in the oles, that's great. But if you don't, mean, cut an orange, eat it, but also take a good big whiff because it is very, you'll feel, you'll be surprised. like, I feel kind of cheerier. And I do love that. It's time for sister questions. know. And I'm like, I'm like out of time and I have other questions, but I'm like, okay, well, I may have to have Donna come back. So I have a couple of comments though that I need to make first of all. And the thing I want to have Donna come back and talk about is the culture and gender, which is still, there's so much to dig into this about. And you have like, The stories of your family do remind me, we're Southern and I feel like that's a culture in its own. And so that's its own thing. And so what you have shared, absolutely love, but you said something when you were talking about your kids and you said the value of care. And I know my parents have taught me many values, but the fact that you place care as a value, I love that. So I just, that's my all moments. So, but I don't want to get away. know Nellie has her question. I don't want to get away without. talking to you about your community, you keep referring to supportive caregiver community group. Because I know we want our get and we'll have all kinds of information about it in our show notes. Just give me, tell me a little bit about it and how our folks can get to it. Tell me what it's going to do for Sure. So we have a caregiver community group or groups rather. We try to keep them pretty small. So no larger than 12 people. And generally there are no more than about six to eight people who show up on any given occasion. Right now we're running them in English on Wednesday evenings and in Spanish Wednesday mornings, late morning. Wow. Love that. The Spanish speaking group actually is a transnational group and several of them are in Ecuador. And yeah, I think that what we've done a little bit differently is we've made it super convenient for people. They're virtual and they're regular, right? So they're not like once a month or once a quarter. They are every week with a trained team of community health workers. They're trained in dementia. Several of us actually do have lived experience as support caregivers or primary caregivers to people living with dementia. And it's, I think, really, I don't know, restorative the space. I actually go, of course, because I started this company. And I want to make sure that everything goes well. If there are any questions or if there is any information that's shared where I feel like there needs to be clarification in terms of kind of like the scientific or medical aspects of that information, I like to be there. I try to be there. But I also personally benefit from it. And I will say. We work in actually mindfulness and breathing to every group meeting. It is semi-structured. So we do have ways of kind of getting everyone to participate as much as they're comfortable. But we also encourage kind of people to push themselves a little bit because I think the value of the space is in sharing and everybody needs to do that. And so we try to do that through our facilitation. And we also are available daily by chat, by WhatsApp chat. So like every day from a.m. to 9 p.m., whatever you want to talk about, whatever you want to share with others. I think also sharing can be healing for us as people going through this. When we feel that our lessons learned can benefit someone else, it gives us purpose again, right? And that I think is really helpful. We always say that healing is relational too, right? Like there are lots of things that come up, I think, as we are caring for these people with whom sometimes we have had complicated relationships. Absolutely. And those aren't things that necessarily get resolved as this disease advances because there isn't an opportunity to do that in the same way when the person who has the disease can't participate in that, right? And so that, being able to talk about that with other people who are similar. in similar positions, I think again is a healing process. And so it's not therapy, but it is therapeutic. And yeah, we invite people to come from all over the United States. We're operating all over the US as well as in Ecuador. Absolutely. I'm going to one more thing. Okay, this is not something where you need to spend three and four hours though for caregivers that don't have a lot of time. How long does the meeting last? Where you go? Guys, you got to carve out an hour. You know what? We always talk about find time and so that you can take time. Yeah, can. Excuse me. Save time because you can save time through a lot of different things. And then that way you can have that hour back to you. And that's just that's time well spent. How can people find out? Where can they go to find out about these groups? They can go to prognosis.com and that's prognosis spelled with a U-S. So the word prognosis, P-R-O-G-N-O-S-U-S, is a misspelling, right, of the word prognosis with an I-S at the end. And what we like to say is that this journey is much different with us together than I alone. And so we deliberately misspell it with a U-S at the end and it's prognosis.com. I love it. feels so good. You know, I just love that. That makes me happy. I'm glad we got to do that. All this information will be in the show notes and we will absolutely share, share, share. And then of course, my favorite question is always the last question. What is your favorite guilty pleasure? What is the one thing that you do for yourself that is just for you? I think it's salsa dancing. What? YESSSS We have a neurologist that is salsa dancing. is totally salsa. my goodness. I am loving this. You are nothing but salsa. That's what I'm going to tell you right now. She's broken the mold. was not expecting Not expecting salsa. No. I did not expect that. I was thinking that maybe she does brain surgery on the side or something. Not salsa dancing. love it. That is fantastic. Donna, thank you so much for being with us. I love when we talk with each other. We're like totally in sync. I know. I know. is sync. It's so much fun. We thank you so much for being with us. This is so important. everybody make sure that you go to prognose us.com and take part of these great resources. And again, thank you for being with us. And until the next time when we can confess again, we'll see you then. Bye. Well, friends, that's a wrap on this week's confession. Thanks so much for listening in to the podcast. But before you go, please take a moment to leave us a review and tell your friends about the confession show. Don't forget, visit our website to sign up for our newsletter, as well as connect with us on Facebook, Instagram, LinkedIn, Pinterest, and Twitter. You'll also find the video recording of all our episodes on the Confessions website and our YouTube channel. We'll see you next Tuesday when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. We are not medical professionals and are not providing any medical advice. If you have medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a Reluctant Caregiver have taken care in selecting the speakers but the opinions of our speakers are theirs alone. The views and opinions stated in this show are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted and no part can be reproduced without the express, written consent of the Sisterhood of Care, LLC. Thank you for listening to the Confessions of a Reluctant Caregiver podcast.