The Caregiving Soul:

[00:00:17] 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, and how we can better navigate the relationship and the physical, emotional, and logistical complications we encounter as partners in care.  

[00:00:39] I’m your host, Dannelle LeBlanc. 

[00:00:45] [Music Ends] 

[00:00:45] The holiday season can be a time of joy and recharging, but for caregivers it can present different challenges intensified by family dynamics and recognizing changes in daily care and health needs. The holidays involve large gathering of friends and family for some, and connecting with loved ones from a distance for others.  

[00:01:11] As we welcome the new season, we’ll be speaking with Laura Smothers-Chu, who will share her personal experience of finding connection through caring for her father from afar.  

[00:01:23] Laura is the CEO and founder of Befriended Heart. In her work, she guides long distance caregivers managing dementia care from the early through late stages.  In our conversation, Laura and I will discuss why caregiving is not tied to proximity, ways to help more effectively from a distance, and how caregiving from afar can give unique insight in the journey. 

[00:01:53] [Music] 

[00:01:54] Welcome to Laura Smothers-Chu! 

[00:02:00] [Music Ends]  

[00:02:00] Dannelle: Hi Laura! 

[00:02:01] Laura: Hi Dannelle! How are you?  

[00:02:03] Dannelle: I’m good. How are you cutie?  

[00:02:06] Laura: Good! 

[00:02:07] Dannelle: Welcome to The Caregiving Soul! 

[00:02:09] Laura: Thank you so much for having.  

[00:02:12] Dannelle: I’m so glad that you’re joining us today. Laura, can you share with our audience what your three core values are and how they connect to your caregiving experience? 

[00:02:24] Laura: Oh, this is such a good question. I love this cuz I’m very mission based, as you know, but the ones that I think are a continuous personal theme for me are compassion, open-mindedness, and advocacy.  

[00:02:38] Compassion – we’re like, yes, of course I’m compassionate cause I’m a caregiver. Right? I think it’s so important that in addition to, of course, being compassionate to the people that we’re caring for and our families and our friends and all of that, right? It’s also so important that we’re compassionate with ourselves. I really wish that I had known how to be present for myself emotionally during my dementia journey. Because it really affects all interactions that you have for the day. Right?  

[00:03:08] Speaking of this, before this interview, I actually checked in with myself and listened to all the emotions that are floating around in my brain so I can hold those in compassion. And I noticed that when I started to do that, before I visited my parents, I was in such a better place. That’s when you really create those genuine relationships because people feel your presence with them.  

[00:03:31] The second thing is open-mindedness. I really try to understand different perspectives, whether that’s how to look at my dementia journey in a way that like no one else has really applied before, so it can give me more skills and more knowledge, not only about how I’m going through the journey, but also about myself as an individual because I think a lot of times in the journey, we start to lose ourselves. I mean even the long-distance caregivers, cuz it really rocks your world [Laughs] to get this diagnosis for the person with dementia, of course, and then also with the family and everyone that’s affected.  

[00:04:10] Open-mindedness is so important. I found it important for me to be able to connect with my dad, even though our relationship had changed. What I found was opening my mind to where he is, and what he’s going through, and what his journey is, and does he see himself as a 20-something, then awesome. Like I’m there with him. So, I kind of think of it as like time traveling. You just join your parent or the person with dementia and you’re like, yeah, I’m going. 

[00:04:36] And then the third thing is advocacy. It’s so important for long-distance caregivers to know that they can help in a substantial way, and I actually believe that long-distance caregiving can be a strength. And we are not told that. We do not learn that. We get a bad rap for not living with our parent with dementia and with our caregiving parent that. That is the narrative that I’m trying to change through advocacy. So definitely, you know, if I had to narrow it down, it’s compassion, open-mindedness, and advocacy. 

[00:05:08] Dannelle: Laura, when you first found out at age 28 and starting this caregiver role, what was it like for you when you first learned about your dad’s dementia diagnosis and how did it change your personal and professional life? 

[00:05:26] Laura: So many emotions, but if I may, may I talk about how I first had an inkling that something was wrong?  

[00:05:34] Dannelle: Yes!  

[00:05:35] Laura: So, I was living long distance, of course, it’s probably not a surprise at this point. I lived about a three-and-a-half-hour drive from my parents. I’m in the DC area actually, and they were in Pennsylvania. 

[00:05:45] And my dad, he just always did the finances for the house. Like he did a lot of things. So, he called me at one point, because we had talked like at least once a week, we were closer, and he said, you know, “hey, I’ve been having trouble balancing the checkbook”, which was like, Whoa, really? Like what do you mean dad? And he said, “Yeah, you know, it’s just weird. Like I’m not getting the math right. And also, I had a really hard time, like it took me like two days to file our taxes” and my dad’s been filing their taxes for like ever. You know, he taught me arithmetic. He taught me math. So, this was not in the ordinary. 

[00:06:26] And so, I listened, you know, and I commiserated and I said, “Yeah, that is weird. Well, thanks for letting me know. And have you talked to mom about it yet?” “Well, I don’t know how she’s gonna respond to it, so I haven’t told her yet”. And I said, “Yeah, that makes sense”. 

[00:06:40] We hung up and I appreciated that he had shared that with me. I had actually been working in the healthcare field as a nonprofit manager, so I had sort of had an idea of like, something’s going on here. This is not just old age, which I think is a myth that we hear a lot. I looked more into it and I said, “Oh man, you might have a mild cognitive impairment”. I did the work behind the scenes. And kind of got a chart for my parents, basically comparing old age changes to signs of cognitive impairment and kind of pointing out, I’m seeing some of these signs. I think it would be really good if we could just get an assessment for dad. 

[00:07:20] We went to a neuropsychologist and it took a very long time [Laughs] to get that assessment that was very uncomfortable, and my dad was freaking out, which he’s usually the chillest person ever. So, that’s also how I knew something was going on. And then, they couldn’t even tell us what type of dementia it was, and me desperate for answers was like, “Well, can you guess?” So, the doctor said, “Well, I think based on your dad’s symptoms, where he’s having trouble finding the words for a regular conversation”. And he said, “It might be FTD, but I don’t know for sure. (frontotemporal dementia)”. 

[00:07:55] So, I of course, being the elder millennial I am, I like look up frontotemporal dementia and the very first thing I see is life expectancy, which is like, not what you wanna see. [Laughs] It’s not the first thing you wanna see. So, that was all of these emotions floating around. But I think the thing that I say feels like it, illustrates it well, is like a sucker punch to the heart. It was devastating. It was lonely. It was depressing. 

[00:08:28] I think a lot of times when families get this diagnosis, especially for the person with dementia, it feels like a death sentence, and I’m learning this much because of how we view dementia in society and how we don’t have a cure, and because of that we don’t have enough resources from everyone else. So, I think those are the major feelings. 

[00:08:41] And then of course, the fact that I live so far away, I was like, “How? How am I going to help?” Especially because I can tell, you know, my mom’s not ready to accept this diagnosis and so many daughters I work with, it’s the same thing for them too. So, it takes the other parent some time to adjust to that. And I get it cuz it’s like their life partner. [Laughs] You know what I mean? And there’s just so much involved there. I basically decided I’m gonna figure out how to help in a way that matters. So, that’s what I did. 

[00:09:13] Dannelle: Wow. When we get that sucker punch to the heart, it can fill us with fear. So, the way that you immediately started doing your homework to learn more about the difference between quote unquote age-related conditions versus potential cognitive impairment was a way that you helped to manage that fear. And I’m wondering, with all of these huge changes, cuz all of a sudden there’s this big shift, right? 

[00:09:47] I’m wondering what else you think would have helped you to better handle the challenges of long-distance caregiving outside of your own initiative? I mean, you talk about the importance of advocacy and I’m wondering if that fits in here? 

[00:10:03] Laura: Yes. Thank you for asking that question. And that was where I got really frustrated because I noticed that the majority of resources and health articles were for the primary caregivers, and in my case, that would be my mom. And like considering she wasn’t ready to accept the diagnosis, then like where does that leave us? 

[00:10:24] I also felt like, with my dad confiding in me with what was going on, I think he knew that I would take the steps that I did. I tried to just be like, “Okay, what would Dad do in this situation? Like what did he teach me how to do?” [Laughs] 

[00:10:38] I looked at all the main dementia websites and sadly to my surprise and chagrin there really wasn’t anything for long distance caregivers. Like we were essentially told very nicely to stay out of things and I was just like, what? That doesn’t make sense. I wanna help. I feel emotionally disconnected and I feel guilty cuz I know my life is here in DC and I’m not gonna be moving to Pennsylvania anytime soon and until my mom is, you know where I am in the acceptance area, they’re not [Laughs] moving close to me. And even so, even if they do accept it, there’s still a case that they might not move close to me. 

[00:11:13] And what I was seeing was like, oh, well you can help financially and send money. And I was 28. [Laughs] I’m just trying to make a living myself. That doesn’t make sense. And then the other thing was like, oh, well, you can run errands for them and like, yeah, that’s great, but if you live three and a half hours away, that doesn’t make any sense. 

[00:11:31] I just started to build my knowledge and really find out, okay, what are these different stages of dementia look like? How can we plan long term for things now that the ground has sunk beneath us, basically? [Laughs] That’s really what I noticed this huge gap in, and so I really just created the path by myself. 

[00:11:55] Dannelle: So, some of the things that long distance caregivers can do are to get more knowledgeable about the diagnosis and what to expect. 

[00:12:06] Laura: Yep.  

[00:12:06] Dannelle: And then that ties into how do we start planning long term ahead of the curve. What other things can long distance caregivers do that will help make the experience better for all involved, all care partners? 

[00:12:27] Laura: This is where that compassion comes in, compassion for ourselves and really cultivating that. And this comes in the acceptance of the diagnosis, but accepting the fact that your parents are now not the parents that you’ve grown up with, not the parents that you can necessarily, at least in my case, ask advice from.  

[00:12:49] The relationship does shift along with everything else, and so kind of learning that you can also reassure yourself. That you can provide that compassion for yourself and also looking to see in your life where there could be relationships that could hold that space. I still have good friends of my parents. They knew each other in college that like I would talk to sometimes and just ask for advice and things like that. So, really kind of spreading your network and your support system, knowing that that’s gonna shift. 

[00:13:25] The next thing is really understanding what it’s like to be a caregiving parent, understanding that everyone has a different journey. I’m always very decisive. I’m always planning ahead, [Laughs] but not everyone is like that, and that’s okay. The patience is huge. So, I feel like the more you can understand what it’s like to be in someone else’s shoes, the more you can have that compassion in these interactions. 

[00:13:56] And the last thing is understanding what it’s like to be your parent with dementia, the person with dementia, and what it’s like to get that diagnosis and that it is very lonely. I really think that that helps inform you as the long-distance caregiver in how you can be the most helpful, not just kind of being led by your fear and your discomfort of wanting to do something, but being intentional in how you share that with your caregiving parent or your forgetful parent. 

[00:14:29] Dannelle: You know, that really ties into how you were talking about long distance caregiving potentially being a strength, because not being necessarily overwhelmed on a daily basis with the activities of daily living and the hands-on stuff, then it gives you a little bit more room to look at how your loved one is experiencing this diagnosis. You mentioned open-mindedness in looking at those different perspectives and about how you would time travel with your dad, what’s it like for him? Can you tell us about a time when you time traveled with your dad? 

[00:15:17] Laura: Yeah, the one time I’m thinking of was when he was in probably like end of mid-stage, early late-stage, where he was still able to walk around and things like that. But this is my belief, that I feel like he saw himself as a 20-something year old and I had found my dad loved all old movies, like I’ve probably seen all black and white movies that have ever existed with him [Laughs] since I was a kid. 

[00:15:44] He used to collect the movie posters and that would be like in his man cave, you know, where we’d watch all these movies, like there’d be all the movie posters around. And so, of course, when he ended up moving to a memory care community, which I helped my parents find, there wasn’t room for a lot of movie posters. [Laughs] Right? 

[00:15:58] So, we sort of had to be very specific and thoughtful about like what we wanted to put in his room. I had found one and I was just like, you know, I wonder how he would react to this. And so, I brought it and put it up on the wall and I said, “Hey dad, like, what do you think about this?” He just loved it. He was so excited. 

[00:16:17] It kind of felt like, you know, he may have thought that I was my mom because why else would this 30 something year old be talking to me? [Laughs] Right? If I’m 20, Right? But like I could just feel his eyes lit up and he almost felt like it was this romantic gift that I gave to him on his date. So, that was very interesting. 

[00:16:35] I find that really interesting because I think sometimes, we’re like, oh, they don’t remember who I am, and I really ascribe to the belief right now that’s coming up in this dementia field that it’s really that they just can’t place you on the timeline. The question is like, do I look like my mom? Yeah. I look a lot like my mom, so it’s not completely out of the ordinary for him to be like, “Oh, well she’s my girlfriend or whatever. She got me a gift”. That was really cool. I let him feel that way, right, because it made him happy. 

[00:17:05] And also, I wanted to just say like, yes to what you said about the perspective about how long-distance caregiving can be a strength. And just to kind of go over that. I give the example of the caregiving parent, my mom living with my dad with dementia as like struggling to get through the forest. There’s like vines, she’s got like a sword she’s trying to get through. She’s like almost carrying my dad and she doesn’t see anything in front of her besides trees. 

[00:17:33] Whereas I feel like long distance caregivers, because we had that emotional disconnect, that can actually be a strength, because we’re able to see the big picture. So, I compare it to like our caregiving parents have a hard time seeing the forest through the trees, but we are like up on the mountain and we can see like, oh, well that forest ends here and there’s a lake. It’s gonna be a great oasis for them. Right? They have no idea. 

[00:17:59] And that exactly points back to what you were saying about the long-term planning and educating ourselves about dementia. Because honestly, at least in my case, my mom was surviving. When you’re surviving, you want to learn more, but you just don’t have the space, again, because our society doesn’t give us enough resources for that. 

[00:18:19] Dannelle: It makes total sense that as a long-distance caregiver, there’s an opportunity to look at things with this bird’s eye view, which is kinda like looking at a map.  

[00:18:33] Laura: Yeah, exactly! 

[00:18:34] Dannelle: From like above. So, you can like see the landscape. You can see, like you said, where the forest ends. You can see where there might potentially be a bubbling stream. 

[00:18:46] Laura: [Laughs]Yes.  

[00:18:49] Dannelle: So, when it comes to long term planning, there’s an opportunity to play a key role In planning ahead for both yourself, your loved one, their primary care partner, in ways that are limited when we are overwhelmed on a daily basis, just in survival mode.  

[00:19:12] Laura: Absolutely, and that’s why the compassion is so important, because you can understand, really, really understand what your parents’ values are. So, then you really get an idea of like, what does that whole map look like? Because we can get the idea of like, okay, what does long-term planning look like? It’s just very black and white. It’s very businessy. And so, what I learned was it was sort of important for me to kind of have this balance, which I finally learned, I think. Balance between being a loving, compassionate daughter and also being a business manager. [Laughs] 

[00:19:49] Dannelle: I love what you just said and I wanna just reiterate because it’s really key when it comes to talking about long-term planning, having this understanding of what your parents’ values are, that’s the underpinning of how we do that. Can you tell us in the context of your parents’ values what that looked like for you with your long-term planning? 

[00:20:13] Laura: Yes. Probably the biggest decision that I think a lot of families need to make is when is the best time to move my forgetful parent into a memory care community or away from home, basically? What I did in this case was, I wanted to really, and I’m building up to this, right? [Laughs] This is many, many years of planting the seed and just kind of seeing how my mom feels about it. 

[00:20:40] But there was one point where I said, okay, my dad’s in mid-stage dementia. I wanna really understand what it’s like to be my mom, in that him living with me, and she drove him up and he stayed with me for a week because that’s what I could manage having a full-time job in DC and it was just so eye-opening. Because we hear about how difficult it is with the activities of daily living, I think as long-distance caregivers, but you don’t really understand it. It’s not really tangible until you actually do it. [Laughs] So, I recommend that actually for daughters that I work with.  

[00:21:18] Like for example, I’ll tell a mini story. At that point, my dad liked to walk around and he would wander at times. So, what I realized was like, oh, I really wanna take a shower and my husband’s at work. Wait, I can’t take a shower cuz dad’s here. And then I was like, I can’t even take a nap cuz dad’s here cuz he might just go out my back door [Laughs] and walk around the neighborhood. 

[00:21:43] As a little kid, I used to put my legs up on my dad’s lap, so I did that same thing because that way we could both take a nap and then if he was gonna get up, I would be able to sense him. But it was in a compassionate way that I did that. That was really telling to me about how hard it is to be a primary caregiver. 

[00:22:02] And then when my mom came to pick him up and bring him home, I had written down some notes of observations that I had made that I wasn’t sure that she was aware of and one of those, and it kind of led up to me being like, I think the way that I opened the conversation was, what are you looking for in a place for dad for memory care? So, really just being open to that and not saying like, this is what we should do. Cause I’m still the daughter. So, respecting that. 

[00:22:30] So, what I had done was I got together a few different options and I said, I actually visited this. I had actually taken my dad during the week that he was staying with me to visit the memory care to see if he liked it for like 15 minutes or half an hour or whatever. So, that way I had that information that I could share. I think I said, what are you looking for in a place for dad when we move him out? And she responded to that so well. 

[00:22:53] I think that it’s so important that we can do the research, we can do the vetting, because that’s a lot of legwork that our parents just cannot do. [Laughs] So, we can do that. We’re great at that. Like I look at reviews anywhere, any restaurant I go to. So, why can’t I do it for memory care communities or things like that.  

[00:23:11] But what I talk about is narrowing it down to like three of the best ones you can find and then saying, hey mom, or hey dad, which one do you think is best? So, then it doesn’t step on their toes. There’s still the parent, they’re still the life partner of this person with dementia, their loved one with dementia, but then they’re empowered to make an educated decision. 

[00:23:36] Dannelle: Right! There’s a huge difference in the way it feels when we can vet the options versus a single-minded answer. 

[00:23:47] Laura: Yeah, and there’s almost too much information out there, Dannelle. We talk about how there aren’t enough resources for caregivers, but I also see that there’s too many resources for caregivers, especially primary caregivers. So, my belief is that why can’t long distance caregivers carry the burden of this stuff that we actually have time to look up, to vet, all of that stuff. 

[00:24:10] Dannelle: Right, and find meaningful resources that make a difference. So, to your point, that there are a lot of resources, there’s a disconnect –  

[00:24:19] Laura: Yes.  

[00:24:19] Dannelle: – In what speaks to or what works for primary caregivers, long distance caregivers, not necessarily having the space or recognition to vet all of those resources, vet all of those options. Cause most of us don’t have time to be vetting a bunch of resources when we’re in the middle of it.  

[00:24:42] Laura: Exactly! 

[00:24:43] Dannelle: It’s very clear how your personal experience caring for your dad informs how you provide support and resources to others who are in a long-distance caregiving role, in particular for someone with cognitive impairment. I would love for our audience to hear what specific tips that you have for them as potential takeaways for long distance caregiving? 

[00:25:16] Laura: Long distance caregiving is a strength that you can substantially help your parents because you have that big picture point of view. That you do have the space. I know it feels like we’re super busy [Laughs] with our own lives, our full-time jobs, our own families, but as I found when my dad was staying with me and I couldn’t take a shower, we do have more time [Laughs] and we have more space for that. 

[00:25:42] Being able to educate ourselves about the dementia stages and also knowing what those long-term steps are going to be. Absolutely get a therapist [Laughs] through this. You need your own therapist. So, very important cuz you need someone to vent to that is not your parents. And also, many of your friends likely won’t understand what you’re going through, as was the case when I was 28. So, therapy is super important. And the last thing is absolutely, if you can, try to have your forgetful parent or the person with dementia to stay with you for at least a week. 

[00:26:18] Dannelle: I love that. I think that that approach altogether really helps emphasize the importance of the role of long-distance caregiving. The thing is, is that underlying long-distance caregiving is like this feeling of being disconnected and that you’re not really a caregiver. You don’t have a reason to experience the emotions that you’re experiencing, so you feel like you can’t talk about them or you don’t qualify to access resources that would normally be targeted towards the primary caregiver. 

[00:26:56] I think that’s kind of the underpinning here. It’s not necessarily that the resources and support are unique to long distance caregiving. It’s that you are eligible, you qualify, you need them, you deserve them, and that the emphasis of what type of support or resources that might be helpful to you, might look different, but it’s still within the same spectrum. So, Laura, outside of caregiving, what’s something you’re also passionate about? 

[00:27:30] Laura: Something I’ve been newly passionate about is human design, which is the perspective on our personalities essentially, and how we create energy for ourselves, how we expend energy, but also what our unique strengths are. So, I use that for my strengths assessment and also mindfulness practice, specifically mindfulness-based stress reduction is so important, and so that’s something that I incorporate into my daily life, and I think it makes a huge difference. 

[00:28:01] Dannelle: I love it. Laura, thank you so much for joining us today on The Caregiving Soul! 

[00:28:07] Laura: Thank you so much for having me. It’s always great to be in your presence, even virtually. 

[00:28:15] Dannelle Recorded): Thank you for joining our conversation with Laura. Laura’s story and work demonstrates that care is not always based on location. Whether we provide care in person or across the country, we need access to support and resources. What might be helpful when caring long distance may look different, but just as essential. 

[00:28:43] Laura emphasizes the importance of compassion for ourselves, especially when long distance caregivers may not feel deserving of recognition or the need for self-compassion. The impact of caregiving is not limited to providing hands on, day-to-day care. 

[00:29:04] During this holiday season, I’d like to take a moment to reflect on the love and warmth caregivers offer to those around them. The work we do is meaningful and impactful. I hope you find moments to celebrate the important ways you improve the lives of others from up close or a distance. 

[00:29:28] Happy holidays from the Empowered Us team! 

[00:29:34] For more information on Laura, check out our show notes.  

[00:29:40] 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.   

[00:29:56] 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.   

[00:30:08] 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.    

[00:30:25] And remember, the right care includes care for you.  

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