← A Place of Yes | A Grief Podcast 
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- [00:00]
A
Hi, I'm Heather Straughter and this is a place of yes. In each episode we have honest conversations about grief. The messy parts, the unexpected moments, and the ways we begin to heal through heartfelt stories and expert advice. My hope is to offer you comfort, connection, and a reminder that you don't have to navigate this alone. Today I'm joined by Robert Espinoza, a nationally recognized advocate and leader in the long term care and caregiving space. After losing both of his parents and and surviving a near fatal heart attack at 39, Robert brings a deeply personal understanding of grief, mortality and what it means to be cared for. In this conversation, he shares how those experiences reshaped his purpose, how they influence his work to reform care systems, and why dignity must be at the center of how we support one another. It's thoughtful, insightful, and grounded in lived experience, and I'm grateful to share it with you. So today's conversation is a little bit different for us here at a place of yes, we're absolutely talking about grief, but we're also talking about caregiving, aging policy, and why redesigning our caregiving and workforce systems is essential to building a more humane society. All of these ideas are hugely important to me and they're hugely important to my community at Jake's Help from Heaven. So I'm really excited about this conversation. My guest is Robert Espinoza. He's a nationally recognized advocate in the long term care and direct care workforce space. And I'm thrilled to have him on a place of yes. Welcome, Robert.
- [01:30]
B
Thank you, Heather. It's a pleasure to be here and I look forward to our conversation.
- [01:35]
A
So before we talk about all things policy and systems, I kind of want to start with you. You, behind your work, behind your advocacy, there is your own grief story and I was hoping you would share that with me. I know it started with the loss of your parents, your mom during COVID your father after that. And how have those experiences shaped you?
- [02:00]
B
Those experiences were deeply profound. I think losing your parents, losing a parent is something that many of us anticipate and there's a lot of anticipatory grief. And yet when it happens, it surprises you. There's no script to grief. There is no standard approach that really addresses the deep questions that it brings up. What it means to lose, lose somebody permanently and then what it raises for you in terms of your own mortality and your future. I lost my mother during the COVID pandemic in December of 2020. She was living in a nursing home, and while she had many Ailments that I think did not would probably have ended her life sooner. It was the COVID pandemic that ultimately derailed her, and we lost her over the course of a few days. It was a scary time. I mean, I think grief was everywhere. The pandemic was taking lives all over the US and around the world, and a lot of us didn't know what to make of it. We didn't know when we would get out of it. And so losing a parent at the same time, I think is just deeply painful, right, because it brought up both deeply personal questions and also existential ones. My father was different. I lost my father a few years later, and he died, decided that he didn't want to pursue medical treatment, and so he was brought into hospice, and he led a very dignified death. I mean, all of us flew in from different parts of the country. We drove there. We were with him in hospice. It took a few weeks, but he was definitely on his terms. And that's just a very different approach.
- [03:41]
A
You know, you raised so much with the COVID time, right? Because then you kind of said grief was everywhere. And I think that is 100% true, because especially in those days, early months. Well, I mean, there was the early months, right? Like, what was it? It was like, you know, three weeks to flatten the curve or whatever that sort of thing was, and then it was months. And, you know, I think for everybody, that was such. I don't want to say impossible, but it felt at times impossible. You know, my oldest son was a freshman in high school, so it was kind of, you know, he went to school one day as a freshman and was doing all the things and then didn't. And then his sophomore year was hybrid, and it was just this whole crazy time. But that idea of so many deaths and so many losses, and then when they're personal and you're right, like, there is anticipatory grief always around the loss of parents because we sort of know that is going to happen. But I feel like Covid kind of took the rug out from under us a little bit, because all of those. I don't want to say typical, but typical things you could do, and even the things you just talked about, you could do with your father, you couldn't do. Were you even able to see your mom, or was it.
- [04:53]
B
No, I think that's absolutely right. I mean, I think that I was living in New York City when the New York City became the epicenter of the pandemic in the US And I was living not that far away from a hospital. And so I remember for about two months, every few hours or so, you would hear sirens, and you would see people being taken out of their homes and being taken to hospitals. We saw the refrigerated trucks that were housing bodies. Right. It was really a somber moment for those of us who lived in the city and who didn't really know, you know, what to do next. You know, what happened with my mother is that nursing homes went on lockdown in the first few months because people were so vulnerable, right. Both because of their immune systems, but also because the virus magnified when you were within a building and you were interacting with others and with workers who were coming in and out of buildings, et cetera. So they went on lockdown. And overnight she lost access to my father. Father who visited her almost every day. The bigger challenge was that she also had lost mobility and function in both arms. And so she wasn't able to pick up her cell phone on her own. And nursing homes were understaffed. So I lost contact with her completely for about three months. And nursing homes, nobody would pick up, and people were busy. And so at the time I was able to talk to her late April, I could tell she was pretty distanced from. There was something that just wasn't there. Mentally. I think the isolation was pretty devastating. Right before she passed in December, I was able to see her for one day. She had just been diagnosed with COVID and she had been taken off dialysis, which I think was another reason that she was going to go quickly. And she was well aware that this was her final moment. And we had a very. You know, my mother was open, but she wasn't open about a lot of things. And I don't think she saw her own death as something she wanted to have a conversation about. So we talked about other things, and then she passed away a few days later. But the nursing home was very much ground zero. People were in hazmat suits. Everybody was being controlled in terms of who got in, who got out. And so it was almost apocalyptic to be able to be in that environment. And I think we learned to say goodbye in different ways. Them.
- [07:18]
A
A friend of mine in this area where I live in Saratoga Springs, he actually wrote a book about. He lost his mother through Covid, too. She had Alzheimer's, and as you mentioned, everything locked down, and it was ground zero. And there was so much you could understand why they had to put some of the precautions in. But it also was this. You're taking people, a vulnerable population already which is why you're protecting them. But they're also isolated. And I mean, three months without being even able to communicate or, you know, they get into the routines of seeing their family. And in this. In Todd's case, his mother did have Alzheimer's. And, you know, so then that was almost compounded because, you know, she didn't understand day to day, like, why this was happening or what it was. And it's on so many levels. It was such a. I don't wanna say tragedy, but like such a hard, hard time. And I'm sorry you lost your mom that way, because I do think that is. It's especially difficult or sad. I don't even know what the words are. But it's profound, you know, And I think that there is. You mentioned, when you were talking about it before, like, there's no script, right. And there's the permanency of death. And that's something, you know, even 15 years after the loss of my. The permanency is the piece of death that I keep coming back to that I just find, like, wow. Like, you know, it. Right? It's common sense. You know, when someone dies, they're gone, but it's really forever. Yeah.
- [08:56]
B
Yeah. It shapes your mind, it halts you. I. I have several voice messages that I save for my mom on my phone and I've never. I won't delete them, but I actually can't listen to them either. There's just some. It's too heavy. And I. There are memories of her around. I do believe that she's still around in many ways, her energy. But I had lots of beautiful life moments after she passed. And there was this deep sadness that came in moments of profound joy, like when I married my husband, like when I received a really great job opportunity, when I. You know. Etc. Etc. And to know that neither she nor my father were around during those moments, there's something heavy about that. Right. And I think a lot of us negotiate that by balancing it with other wins. Right? So I said, well, they're not around. But they actually gave me the strength and the loving and the courageousness, the courage to be able to experience these moments. And I wouldn't have had them if they weren't around. So they are around. Right.
- [09:57]
A
It's a good thing. I totally believe they're always there. But I had read something fairly recently and it really struck me, and I think when we talked before, I still have both of my parents. My husband has lost both of his. And it's really forced me to really think about some of that, like, seeing that loss and both of them gone. And. But so I read this piece, and it really stood out to me. It was something about, like, when you lose both of your parents, regardless of all the other people in your life, right? Like, your spouses and your children, if you have them and friends and all of these people around who are your cheerleaders, it's like you lose your original cheerleaders, right? Like, you lose those two people who, through it all through your entire life, have kind of, you know, been there. And I don't know, something about the way that. Just the wording or when it hit me on that certain day, I was like, wow, that. That is a lot. Like, that's more than just, you know, your mom and dad, as you think of them. It's kind of like, intrinsically, like, you are who you are in many ways because of them, right?
- [10:57]
B
Like, yeah, absolutely. And, you know, I. As I shared my story with friends and others, I realized that a lot of people have complicated relationships with their parents, right? I did not. And so I did lose my 100% cheerleader, my unconditional love. The person who didn't care what I was doing professionally, but just love me as a person. And that's rare.
- [11:21]
A
No, it is. For sure. So your dad. I like how you sort of kind of the juxtaposition, right? Like, so your dad died on his own terms, and when he decided to not get medical care, I'm always curious about this. Like, did you push them? Like, or did you have siblings? Like, did you guys say, like, wait, are you sure? Or did you accept it right away? Or what was that process like?
- [11:41]
B
Because we accepted it right away. My father was somebody who was just very sure of what he wanted and very, you know, assertive about what he wanted, and he just really believed it. No. And, you know, and he had lived a long and hard life. He had fought in two wars. He went to Vietnam, he went to Korea. He worked hard his whole life, and he was incurring disabilities that was taking away his quality of life in a world that's so inaccessible to people. So he was becoming both deaf and blind in the last year or two and then developed dementia. So the combination of all those three, I think, made it clear to him and to us that he was no longer living a quality life. Right. So when it became clear that he wanted to make this decision, I mean, I didn't question it. I actually never had the conversation with my sister, but I'm pretty sure she didn't either. I mean, we supported him in that moment and we certainly supported him once the decision had been made and we were in the room, right? He would jokingly, he had a funny, quirky sense of humor. He would fall asleep and then he would wake up and look around at all of us and very angrily say, ah, why am I still alive? And I remember thinking, like, there's something so humane and heartbreaking and also inspiring about being able to also die with dignity, not just live, work and age with dignity, which is what I believe my career has been about and should be an ideal. And to see that real life and to have your family and friends surround you and love you as you take that step into that transition, that's really the beautiful thing to do. And so, no, we never question them.
- [13:31]
A
I am, I actually love that story because it really resonates with my father in law. He passed away a year ago December. And I've talked about it on the show, but it was, it was, you know, I was obviously very present when my son died, but that was a different situation. That was not, you know, it was different when my father in law was actively dying. You know, we were in the room and my husband is the youngest of five and there are, there was kind of different emotions and viewpoints and thoughts through this whole thing. But at one point, my husband and I were the only ones in the room. And it's when my father in law took his last breath. And I very much believe that he did it then, kind of like you said, because he was clearly ready. Like, he had Covid. He had. Things had gotten really complicated and uncomfortable for him at the end, and it was just, it was not a quality of life that he had been previously having. So he was kind of done. But I think he waited, or at least I believe, like he waited until that moment when he knew he could go peacefully without, like the big, like, I don't want to say drama, because that's like, that's kind of mean. But like, all of a sudden we were there and then my husband was like, oh my God, like, go, go, go, look. And I was like. And I didn't know how to really use the words, but I was like, okay, he's gone. You know, but he transitioned, in my opinion, really beautifully. And I think there is dignity in being able to take your last breath if that's how it kind of works out and be like, you know, I've had a. It's my time, so I do. I kind of get that right. And we Want dignity, such a big word. And we're going to get into sort of that because I'm very interested and very into like the work that you're doing in the career and the professional life you've done. And I think I'd love. I want to get into that, but the next thing I want to, before we go there is your grief story has one more chapter in it, or maybe many more. But for the sake of this conversation, you had your own very near death experience. And I know that those experiences have to change, like alter your thinking. So I was hoping you could share some of that, like what happened to you in 2016 and kind of how that has influenced you as well.
- [15:49]
B
Yeah, absolutely. It probably had the most impact that I've had on my career and on my life because it's giving me a very different lens on mortality, on our healthcare and caregiving systems, on relationships to people and what I want and what I don't want. So what you're referring to is that in early 2016 and February of that year, I had a severe heart attack. I was 39 years old. I was walking by a park one morning and my heart just stopped and I fell face forward into snow. I don't remember the incident. This was all relayed to me because my memory erased it. It's almost too traumatic to remember. There were two EMTs who were across the street by chance. They were having coffee, they were on a break and they heard a woman scream. So they ran over and gave me CPR.
- [16:41]
A
They.
- [16:41]
B
And it was those 45 minutes of expert level CPR that kept my brain functioning and keeps me here today. Right. There was a hospital nearby, so they rushed me to the hospital. I did not have any identifying information on me, which to me is strange. I always carried my wallet. I'm not sure what happened. And a lieutenant who had been assigned to my case, a detective, he basically took my limp finger and opened my phone and posted on my Facebook that he needed access and to my family members who were in a next of kin world needed to authorize the surgery and they needed to be kept abreast of what was happening. I went through a very intensive surgery. A surgeon later told me that I had a 6% chance of surviving at the time. And I woke up out of a medically induced coma about a week later. I think a lot of the grief and the experiences and the learning didn't happen in those first few months. I was too sedated, I was too shocked by the experience of it. And I was really just trying to get by the hour to even think about what was going on. It happened much later and it took years for me to make sense of one what it meant, why me, right? Why did I have it and why did I survive? People kept asking me what did I see when I went under? I don't remember. So I don't have a good answer to that question.
- [18:08]
A
And white lights, right?
- [18:09]
B
No white lights, no. Like, you know, I wasn't floating above my body. I don't. If I was, I don't remember. Right. But I spent years, you know, really making sense of what it meant to live with congestive heart failure. What it meant to have navigated a healthcare and long term care system that on one level was quite warm and embracing and beautiful and on another level was deeply fractured and problematic and expensive. Right. I believe that my entire healthcare experience in that first year was about $1.5 million and I had health insurance that covered the vast majority. But imagine if I didn't. So I think it's really shaped me in so many ways. I'm still learning. I think it's a system that's so complicated and keeps shifting. But I would say the greatest lesson that I took from that, and it's a little philosophical and it's less policy focused, was that life matters more and it matters less. And the key is to figure out what's just happening when. And it's guided everything I do since then.
- [19:13]
A
I am a huge fan, believer of all of that because I think it's very true and I think my, it's taking me also taken me years in my sort of grief journey and maturing and all of these things to figure that out. But it's almost like once you figure it out, at least for me, it's like I'm obsessed with the idea and I'm so frustrated when other people don't kind of get it sometimes probably to the point where I'm annoying, but it does, it matters more. Like you have to figure out that which aspects of your life are worth getting upset about, worth fighting for, worth being in all of that. And what is just let it go like, you know what I mean? Like there's so many things and I think it gets twisted for so many of us and if we're not cognizant, like I even find myself getting like frazzled over something and I'm like, wait, this is not one of those moments. This is one of the moments that matter less. This is not worth like, you know, I was talking to Someone last week on the show, and they were like, life is for the living. And that's another very like, cliche, cliche kind of thing. But, like, when we're living, we have to be living our life. Like, we have to be in it. We have to be present. I wanted. There's a couple of things I wanted to follow up on, and one is that story about the lieutenant with your finger and the Facebook, who did they find? Like, so they. So they did a Facebook post telling like, hey, we need someone. Who did they. Who. Who reached out, who did they contact? And that must be so alarming. I can't imagine being like, seeing that post and being like, oh, my God, it's my brother friend.
- [20:42]
B
It was alarming. And in fact, my friends who were at the hospital when I woke up, they kept my phone away from me for several days at the doctors requested a psychiatrist who was in the hospital because they felt that reading it or seeing what was on my phone was just going to be too alarming. And so eventually I got on my phone and I looked at Facebook and It has like 180 comments on it. Right. I still have it. I refuse. I think it's a nice memory in its own way. Right?
- [21:10]
A
Yeah. It's like a chapter or like a piece. Yeah.
- [21:12]
B
You know, he posts and it takes. The first few people are trying to figure out if it's real or not or if somebody has stolen my phone. Right. He shares his number and people call and sure enough verify that he is, in fact a detective and an officer for the hospital working at the hospital. And then you just see the scrambling on Facebook. You see family members in Mexico, family members in the US Friends, people messaging each other. Several friends who lived in the area immediately went to the hospital. Right.
- [21:42]
A
Okay.
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B
They were going to be present, but it's, you know, and eventually they. They figured out my parents number and they got to my sister who became, you know, who flew to the city, I think a day or two later. But it's. It's interesting to see that on social media. Would I have posted a heart attack on social media on my own? No, absolutely not. That is so private and it was so profound. Right. But what it did, in many ways, maybe this was the unintended gift is that for months and years later, because everyone knew about it, everyone felt comfortable talking to me, asking questions, and in some cases I had to like, say, no, I'm not. I don't want to talk about that. But in a lot of cases, it was a way of turning what Would have been a private grief into like a public resolution, I would say. Right. But yeah, I still keep it. I still look at it every now and then. It's February 5th and it's, it's fascinating how, how we all come to each other to help each other at times.
- [22:43]
A
It's, you know, so I kind of get that, like I could. Part of that is, you know, we talk about it in grief all the time. Right. Like people don't know what to say, so they say nothing. And sometimes that's worse because you want to be able to talk about it, but it's not always on the griever or the person to. It's not up to them to always have to like, say it's okay. So you're right. Kind of like social media, like it's all out there, so some of the answers or the things are there. So it probably makes it easier. And I would definitely agree. You need to have like some boundaries and be like, hey, no, that's not a. But it, it takes some of the pressure off of having to like navigate the, like, what do I say? What do I don't say? What? Why did they respond that way? All of those things.
- [23:24]
B
All of those things. And I think over time it took me a while to learn what I wanted to say and what I wanted to keep private. I think early on would just divulge everything and then realize that what came back at me were questions that felt really intrusive. Well intentioned, but too intrusive. Right. And I think it took me a while to figure out what I wanted to share and what I didn't. And I recently wrote about it. I launched a substack called Care actually, where the first article looks at what it means to live with heart failure or what it means to navigate a caregiving system that is meant to really support the people who give and receive care, but too often doesn't deliver on that promise. And so it's been helpful.
- [24:07]
A
I want to bring back one thing because this has been sort of as, as you've been talking, I've been like in the back of my mind because I always, since I've lost Jake and since I've like depended on sort of this and, and since I've really had so many of these conversations and really immersed myself into like the world of grief and, and living with grief and all of the things. Two things of this story kind of stand out to me. One is you say you always had your wallet and you didn't. Like, that's just like, like, what the hell? That day? Why did I not. But then also this horrible thing happens. You, like, go down and you're alone because you're out for a walk, but there happened to be two EMTs who can perform the exact kind of care you need to keep you, like you said, your brain going and all of that. So what a crazy kind of juxtaposition of, like. I don't want to say luck, because that's not the right word at all in this, but, like, you didn't have like one strike was. You didn't have your id, but then you were in a place where someone saw you, they screamed, they were able to have two EMTs. I mean, I'm sure that had to have had a profound impact on the fact that we're here now having this conversation.
- [25:13]
B
Absolutely. In fact, I would say about maybe a year and a half later, I was at a conference in Chicago and I went to the hotel lobby bar, as many people do at conferences. Right. And I asked for a seat by myself. I was still, you know, a little bit antisocial, just given the situation. And I happened to be seated next to a woman who was an expert in near death experiences, and she taught courses in the south that took people who had gone through near death experiences, and she took them into nature and helped them write about it as a way of processing. And so I opened up about my experience. I felt like it was interesting and I wondered what she had to say. And she told me that the two most common questions that near death experience survivors are asked are, why did this happen? And what did you see? Right. And why did this happen? Is why did I survive? Not why did I experience, et cetera. Right.
- [26:11]
A
And.
- [26:11]
B
And it's as you mentioned, I mean, there were a lot of. I will call them miracles, even though I'm not a religious person. But I. It's something where the miracle of a woman screaming, the miracle that happened outside, it could have happened indoor. I lived by myself at the time. The miracle, there were two EMTs that hurt her and ran over and kindly offered their help. The miracle that when I got to the hospital, the chief heart surgeon was already on his way home. And when they called him and gave him my vitals and my diagnosis, he said, I'm sorry, he's too far gone. Like, let's just keep him comfortable. And then he remembered a machine called the ECMO machine that the hospital, I believe, had never used in an emergency setting. And he realized, let's try that. And he spun around in Manhattan and drove all the way to Brooklyn to do the surgery. Saved my life. Right. And the machine saved my life. And then all the small ways that are less tangible in which friends and family and healthcare workers stepped in for months and years to offer support where, you know, I could have not made it in the years after that. And I think those are also miracles as well. Again, I'm not a religious person, but I do believe there's that line we sometimes balance as secular thinkers between what is rational and what was given to us and what was given to us by the cosmos. Right. I'm humble enough to not know the answer to that.
- [27:36]
A
I am. I'm such a. You know, so I, too, am not a very religious person at all, but I have this very. More so in the later years of my life. But, like, this, this. There's unexplainable things, and I don't question them. I, like, really, I'm kind of obsessed with them. Right. Like, I believe in them. I think they're true. But who am I to say if it is or not? Like, I don't know. But, you know, I don't. And when Jake died in the beginning, like, I was. I was raised Catholic, was not an active Catholic. Like, Jake died, and I was like, okay, I, like, started going to church. I, like, I made my husband, who is not Catholic or even Christian, I was like, we're all going to church. Like, we have to find aunt. Like, I just. I was grasping so hard to find some belief system that would help me. And it became pretty clear that that was not. That wasn't the thing. But it did give me a little bit of, like, renewed faith, maybe. And, like, this idea of spirituality, like, it. It gave me this, like, okay, like, figure out where your avenue is. It's not necessarily religious, but there is this whole other world where, like, I don't know, like, all of those miracles. Right. Like, thank you. Like, thanks that they're there.
- [28:47]
B
Like, it's. Yeah. And sometimes they work in our favor and sometimes they give us what we need but we don't want. Right. And I've learned to accept that as well. But, yeah, I mean, I spent years thinking, why did I survive? Like, what is my calling? Like, what am I meant to do that I was not going to do had I not experienced that? And it's an impossible question to ask. And so instead, you focus on what is answerable, which is, you know, what is my purpose? What makes me happy? Where are there problems that I can help solve? I've always considered social justice, my religion, my purpose. And I've always considered poetry my scripture, right? Because I think there's so much nuance and beauty and poetry that I find the same purpose that I imagine a lot of religious people feel. And so I've kept those as compasses, so to speak, But I haven't answered the question at once. Why did I survive? But I'm glad I did.
- [29:47]
A
I am, too. So you mentioned. And I think this kind of segues a lot, because what you just said, you know, it's always. There are impossible questions, right? Like, is. Is what you are doing now because of what happened? Is it. Would you. Where would you have been otherwise? We don't know where we would have been otherwise because we don't know what otherwise even would have been. You know, I always say sometimes that the work I'm doing now, the conversations, the writing that, the. The talk, the foundation that I run, all of that is because my son, and it obviously is, but I can't say what. What life would have been like otherwise. You know, I just know this is where I am now. And sometimes that's. That's okay to be enough. You referenced your healthcare costing about $1.5 million, and I want to say, so. So when my son, he was born healthy. The first eight months of his life, he was healthy. He had what we didn't even identify as a seizure, but was a seizure in the middle of the night when he was 8 months old. And we ended up having to, you know, go to Boston children's. We spent 117 days there. When we were finally discharged, he was a very different child. Had lost all his milestones, required 24, 7 care. Never gained those milestones back, right? Like, he. He never sat up independently. He could never feed himself again. Like, all of those things were lost. And in that time, the healthcare then was a little bit different than it is now. But we had, you know, I had a personal insurance person that I would call all the time, and I would have to say, okay, this is the last. You know, this is where we're going to Boston. We live in upstate New York. So we were traveling. I had to get approval for all of the visits. But what was interesting back then was that I had one person who was assigned to our case. Her name was Lana Baker. And I would call her, and sometimes we'd argue because she's like, I can't get that approved. And I'd be like, well, my. You know, like, it'd be the advocate mom and me, but we kind of could Push it through. We would get those, these are not a bill statements from insurance all the time. And we tallied for years, especially in the beginning. I mean, I think we stopped tallying at around $3 million because, like, what was the point? And insurance was covering it and we were certainly paying some out of pocket expenses, but like, it was what it was. But I can remember during that time, during the hospitalization, during all of that, just being flabbergasted, for lack of a better word, but just completely floored that this is like what is happening. You know, he'd have like a blood test to do something and it would be like a $1200 blood test. And I just, I still, like, I'm less, I'm less involved in the day to day of that stuff now. But I do work with like families through the organization. But our healthcare system is broken. Like these numbers, it's almost like made up money. Right? Like it's like monopoly money because you can't even wrap your head around the fact that these are real dollars, but they are real dollars and they're crazy. So I want to talk more about the work that you're doing now because I think it's so important for so many and it's just such a. It's something I think people just yap at us about and then expect us not to think about or care about.
- [33:11]
B
Yeah, absolutely. I mean, it's a broken healthcare system and you've hit on a few pieces. One, it's the costs are exorbitant and most people can't afford it. And when you don't have insurance or don't have somebody to help navigate you through the complexity of constantly negotiating what insurance will pay or not. It creates enormous debts for people that really straddle them in poverty or keep them from kind of financially succeeding. Right. I also think it's a tug of war. It's a tug of war often among hospitals, insurance companies, pharmaceutical companies, various actors who are all trying to say, you pay for it, I deserve the money and you pay for it. Right. And that tug of war ends up costing families not just actual money, but their lives. Right. We know a lot of people who don't get the healthcare they deserve and then, you know, incur serious illnesses, they end up dying prematurely, et cetera. So it's an unfortunate reality that has to be reformed.
- [34:17]
A
It's also, you know, it made me think of one thing that I just took a note of it because it also. They're not getting the care they need, but the amount of people who are so fearful of doctors now, scared of the system, against the system. And that also leads into these like premature deaths or like, you know, I can't. This whole cycle in our community where I live, like we've been, we now have a community health center for like the underinsured or the non insured or underinsured because there was so much. People don't go to the doctors because they don't have insurance, so they can't afford it, but then they go to the emergency room and have some, you know, much further along further progressed disease which then ends up costing everybody more because it was not treated. So what is if we can change that mentality or change the system a little bit so you have a place to go that can treat you along the way so it doesn't become something, but it's, it's just an ongoing challenge. And I just don't know where we, how we get ahead of it. Right. Like, I don't know where those things are because you're right, it's all these different parties and it's become so grossly about the bottom line and not about humans. Like, I feel like humans are not even thought about.
- [35:37]
B
Yeah, absolutely. I mean, I think that in our country, and maybe this is in many other countries, there's this mindset about individuality. Right. Individualism, this belief that positive health is a private burden and your responsibility as an individual versus a public responsibility that addresses the systems that shape that. Right. So, for example, I think. Yes, I think a lot of people, you know, they may not be eating properly, they may not be seeing their doctor early on, and they may be afraid of healthcare systems for a variety of reasons, valid or not. And because of that, then emergency rooms and hospitals become the primary purveyor of healthcare. I think prisons are another example of a primary purveyor of care. Right. And yet it can't be all explained away or solved by simply telling the person, well, you should have done A and B. The reality is we can all see the ways in which you encounter barriers systemically that immediately derails your ability to access healthcare. And if you can't see it, you're gonna see it eventually.
- [36:47]
A
Yeah, no, for sure. I mean. Yeah.
- [36:48]
B
So I think that's the problem. Yeah.
- [36:50]
A
Where, you know, it's interesting. One of the things at this community health center in our town is like we try to put. Not we, I have nothing to do with it other than believing in it, but this idea that if you put all of these doctors under this One space, right. So there is, you know, you get someone there, but they can also see a dentist. Because, you know, what is the other thing that that oftentimes gets neglected? Your teeth. But then your teeth are neglected and there's all this infection. So then you get these illnesses, you know, kind of this whole thing you mentioned, like, okay, don't eat, right. So then there's also like a mini food pantry there, which isn't necessarily a typical food pantry, but it's almost like a food education, I guess, is sort of more. So it's like, here, why don't you try these instead of doing this? Like, this is some healthier options. Then there's mental health and there's addiction and there's like all of this stuff under one roof. In the attempt that with the theory that if you could get someone in who ordinarily wouldn't go in, you have them build a rapport, like, feel okay about it, then you can kind of manage full care. I don't have great numbers or I don't know how successful this is or not. I know theoretically for me, I think this is huge because it's gotta be making an impact, even if it's just in a small community, in a small numbers. But I don't, you know, I mean, what. What do you think? Like, there's so many disconnects right now between what people need, what what is offered, what our systems provide. Like, where do you see important next steps? And I'm always fascinated with this because I do, you know, our nonprofit work works with individuals who just have multiple medical challenges. Right. We're not talking about someone with just, you know, a broken arm. We're talking about like neurological disorders, physical disorders, physical disabilities, like all kinds of things. And we try to step in where insurances and other people don't, like, don't always cover. So we can fill some of those gaps. But I can tell you in the 11 plus years we've been doing this, that the 15 years, I guess. No, the 15 years we've been doing this, the gaps are just getting bigger and the costs are like. And, and we're needing to cover more. You know, sometimes we're covering diapers, we're covering medications that are no longer covered. And I just threw a lot at you, but like, you know, where do you. Where is that disconnect? And how can we, like, figure that out? Like, how can we move forward?
- [39:10]
B
Yeah, it's. It's a few things that come to mind. I mean, first the idea that, you know, what community Health centers embody, I think in many ways is what a country should embody if it's going to transform its healthcare and its long term care system, which is this idea of coordinated care, recognizing that people are multifaceted and often need care supports for different reasons, but also coordinated services. Right. So it may not all be about healthcare. It might be about transportation or childcare or financial counseling, et cetera. And if there's a centralized place, literally in a physical building that allows people to really experience that, I think that it's really where our country should be because we live in an opposite reality where all the word care is often disconnected from each other. My primary doctors don't talk to my therapist, my therapist don't talk to my, etc. Etc. And, and that creates just a fractured system where your care is just not optimized. Right. But also we see people's care needs as separate from their life needs, which doesn't make sense. Right. Like the fact is they're really, if I can't drive because I don't have adequate transportation support to my doctor, it doesn't matter if I can afford them or not.
- [40:25]
A
Right.
- [40:27]
B
They're connected. And so I think that in an ideal system, and we see this with models like aging in place models, right. Where we're trying to figure out, cities are trying to figure out, how do you create those range of care supports and social services that somebody will have within a geographic space so that it's easier to get to and have access to. Right. Because right now it's just disconnected in a variety of ways. The other piece that I want to talk about is we started with this somewhat and I think it's at the center of our country, which is how much should people pay for care and how much should the government pay for care. Right. And that's a loaded question that immediately gets people thinking about ideologies, et cetera. And yet there are plenty of examples, especially in Europe, where what we might call a social insurance framework where care is thought of and understood as a public good, a public contract that should be offered to people which makes care more affordable. Right? That becomes then the design of the system. I just wrote a few articles with a professor from Germany that compares Germany and the US and their long term care systems. And it's apples and oranges. Germany has really built a social insurance system that yes, it might have some limitations, but in essence acknowledges that people need to be able to afford care. They should have good workers who deliver that care, good jobs for those workers, and they See it as. Whereas if you build that at the core, you create a stronger economy. Right. You create a stronger country in many ways. The US does not have that. In fact, the closest we've come was an attempt in 2010 under what was called the Class act that never materialized, or a state based model in Washington state that is trying to figure it out, but we hardly have it as a national vision.
- [42:19]
A
Well, it's, you know, and I wrote it down when you said this because it's kind of come up a couple different times too. It's. It's the indiv. Like being focused on the individual and ourselves. Right. Like, what do I need? Can I afford this? I want to see the best doctor. I don't care what my neighbor does. Like, that mentality which is all over every aspect of sort of our country's thinking. Right? Like, versus a true public health system. A true. What is. You know, this. The idea seems so foreign to so many people of the idea that, wait, if my neighbor's healthy, that's better for me too. Right? Like, it doesn't. It's just this idea, you know, my, my son's at junior oncology, is at Syracuse, and he has a public health minor. And at first, I don't know how he really ended up. I'm not sure that I think it was like as altruistic as I wish it would be. But like, he was kind of like, okay, kind of fits. I took a class, he took one class in public health just as one of it. And it was interesting to him. So he's like, hey, I can do this. And it's kind of been interesting to see because he's seeing some of what could be versus what is. And he's at that age where it's sort of the world. You know, he's 21, so like, you kind of see the world in a different eye than you do when you're 18 or when you're younger. And it's just been interesting. But I do think, I don't know how we shifted in this country. Right. Because how do we shift from thinking so much about just individually versus the public? You know, like true public health. True. Because to me it seems so obvious in the ways that you say and you look at other countries, right. Who are doing it. And, and yes, maybe people will argue and say, well, they're smaller and they're this and they're that, but the system is in place.
- [44:01]
B
Exactly. I mean, I, I think we probably have had this individual, individualism mindset for decades, if not Forever, right? This idea, as long as this country has been established, this idea that if you work hard, you define your lot in life, right? And the reality is you and I have many examples of where you can work as hard as you want and still not achieve the life that you want. And there are health disruptions, there are systemic barriers, there are accidents, et cetera, et cetera. Right? And so I think that's just, it's an ingrained mindset that's pretty hard to dislodge. I think what's needed on top of that mindset is this belief that we, you know, we will function better as individuals if we have certain types of system, systemic supports, right? One of them being affordable healthcare, one of them being, you know, affordable long term care, right. Social services that catch us when our best efforts really don't get us where we need to be. That's something that I think a few countries in Europe have really figured out. Even though again, I'm sure there are limitations with their models, but they at least have not bought into this idea that if you struggle, it's your fault. It's not, it's not, it's not the chase.
- [45:19]
A
Yeah, well, you just, you know, you said the things social services for when things don't quite work out. And that is at the heart of so much of this, right? Like when Jake had his seizure in the middle of the night, our entire world changed. You know what? Like, like we were in the emergency room. There was no one in this area who could take care of him. At one point I was like, can we get a helicopter to Boston? It was too windy. We couldn't like all of these things. And in those 117 days that we were in the hospital, we were fortunate enough where we, we gave up our lives here. My husband, you know, had a job where he kind of just was like, I need to be with my son. He worked for my family's business. So it just, luckily it worked and we just, we were able to handle that. I tell the story sometimes of this little boy named Angel. Jake was always like, he was in, sometimes he was in alone in a room, sometimes he had a roommate, like depending on what they were trying to figure out with him, he'd be on different floors. You know, we were, we were on the move. But there was this little boy, angel, who was very, very sick. And his parents, I always say they loved him just as much as we loved Jake, but they couldn't because of work, because of life, because of all of these other things. They could not just drop everything and spend 247 with him as most people could not. And I just remember being like, you could see the judgment. You could see like people being like, oh, no one's there to see him, this poor kid. But it wasn't, it was not about love. It was not about anything. It was just, they couldn't. And that is, you know, so I love the way you had sort of said that like people can be working really hard, they can be doing all the right things and then the shit hits the fan. Jake had a seizure that could cripple families, that could break everything. You know, like we can all be one step away from living in your car, right? Like, like once it goes wrong, it goes wrong. And we don't have a society that, that I don't know, I feel like, I don't want to sound like hokey, but like there has to be some compassion and, and you know, one of the words we've talked a lot about is like dignity, like allowing people to have the dignity if something goes wrong, not to just throw them away with the, you know, the baby with the bathwater or any of those things. Right? Like, how do we create a, how do we change the culture of it a little bit?
- [47:42]
B
I think, yeah, I mean, I think that there are models that show promise at least in the long term care system and I think there are efforts that are happening nationally around narrative change that are really critical for us as a country. Because what we're describing, what you just described so eloquently is something that's not, it's not isolated to care. And long term care, it spans a whole range of social issues that we're facing, right. It's an increased lack of empathy and compassion for people. It's this belief that what you're experiencing is over there. But it doesn't affect me, right? And it's this mentality that I will survive and live happily if I just keep doing everything. When in reality there's going to be a million barriers that you'll hear. Right? And so I'll offer two examples. One is that we are seeing, for example, more and more examples of kind of person centered care models in long term care. Right? We see for example, a small home model where nursing homes are reimagined instead as small homes where people, you know, six to seven people are living in a home. They have full support from workers. They're designed not to look like hospitals, but to look like actual homes. And the support that people who live there receive is coordinated around the rhythms of their life. They don't have to wake up at 6am Simply because that's when breakfast is served. They can do what we all do when we live at home. Right?
- [49:11]
A
Yep.
- [49:13]
B
And you get community with the six people and workers are also supported, et cetera. And so I think those smaller pilots that are showing what compassion and dignity look like when they're structured and resourced properly, I think can give us example from the broader care system in terms of the narrative change. I have the honor of serving on the board of directors for a group called the Frameworks Institute, and they've been studying dominant narratives on a range of issues for years. And I think there's data and research showing that there's some scary trends that. These trends around individualism, around the inability of people to talk to each other, even live next to each other based on their political partisanship, et cetera, those are all very, very scary signals. But at the same time, people do often understand that they're part of systems. They're just not always able to sort of forge the solution that's needed for that. Right. And that's important. Once people stop seeing the system around them, then that's pretty fatalistic. But at least the fact that they can see it but may not be able to plot what's next is a step forward.
- [50:23]
A
I love the small home care model you were talking about. It reminds me of in like. Like the. The homes for like the day habs and the homes for people with disabilities that are. That are existing now. And I've seen some really successful, amazing models with that where we really, you know, like dignity being kind of like the underlying theme of it a little bit, but where instead of having people, you know, who have these different disabilities that make it harder for them to live independently, but. But the choices used to be you were kind of like hospitalized, even institutionalized. Like, a lot of those are faded away, but you call it something different, but it's still sort of the same. Or you're staying at home, which then becomes difficult with aging parents and all those stuff. But there are some of these small group homes that have, when they work well, they're so beneficial for everybody. Right. Like for the individual that's living there who has camaraderie, who has some independence, who has, you know, maybe can get a job. But because they're in this home, there is a. There's a van that takes like all of the things that otherwise would be preventative are being sort of addressed as well as the care, and it's just it's almost better. It's better for the family, it's better for the individual. So to see this in kind of an aging community or to see this in a, in an other way, I was like, I just think that could be really exciting. Like, are there models like that, are they happening in this country right now?
- [51:53]
B
Yeah, absolutely. I mean, I think what I mentioned, the small home model, think that that's one example. Right. I mean, I do think that you see also homes for people with disabilities and dementia care and, and those kinds of settings. Right. I think the challenge is that they're not brought to scale. They're often, they're, they're small, they exist in a patchwork way around the country. Another reason is that it requires a certain amount of resources. So either you pay out of pocket and it becomes only accessible to people of a certain income level, or the government pays it, but then it's under resourced. Right. And so what we have instead is we have a system where if you can't access care at home, you either forego it, which is dangerous, or you know, if you have means, you can go into assisted living, pay out of pocket. Right. Which you know, are relatively nice arrangements, or you go into nursing homes which, you know, offer really important 24 hour skilled care. But unfortunately they're not what most people prefer. Right. And that's a nice way of saying that many nursing homes just did not meet the standards. Right. And so I think that that's the challenge is how do you take the smaller models that are rich with learning and scale them in a way that the public sees we should invest in so everyone can benefit from it. Yep.
- [53:14]
A
I mean, and that's the challenge. Right. Like how do we like this conversation? How do we get people listening to it? How do we get people thinking about it? Because I think it goes back to sort of that, I don't want to always say, like the individualism of it, but like those who can afford these for whatever reason often don't care about the ones who can't. Or even if theoretically they do care, when push comes to shove, I don't know that they do. Right. Like it's like, yeah, yeah.
- [53:40]
B
Or they care about them on a personal level, but they don't want to see their taxes, their tax paying dollars. That's I guess, a solution that supports them because they believe they're responsible for their plight. Right. I mean, I think more broadly than care, that's the mindset that needs to be transformed. This idea that as individuals we're responsible for everything good or bad, that happens to us. In reality, we're not. We're interconnected and the systems are there. Right. In terms of care, I mean, I think we need, as a country, we need a national long term care social insurance program. Right. We need the ability for the government to pay for a reasonable amount of cost for people so that, you know, they have the ability to afford these systems and they don't forego care. And then it creates this stratified system. Right? So I think that is a solution. And we need to figure out healthcare. Right? We need to figure out how do we control the cost, how do we incentivize all the pernicious effects, the role that pharmaceuticals companies have and making certain medications beyond expensive. Right.
- [54:44]
A
Out of nowhere too, sometimes, right? Like, it's like you wake up one day and then all of a sudden this is astronomical. And you're like, okay, absolutely.
- [54:51]
B
And I had that experience recently. I have a medication for my heart condition that without insurance is a few thousand dollars. And recently it lost its patents, which my insurance covered. But the generic version of it had not yet reached pharmacies and the insurance stopped covering it and said I should go for the generic version. But I couldn't find a pharmacy that carried it. Right. Do I pay out of pocket for three or four months and do I forego it and just see what risk it happens on my heart? No. Right. And so we paid out of pocket until we could find a pharmacy that found it. That's unacceptable. Right. And that tells you all the problems.
- [55:31]
A
I mean, I have one medication that I take that is constantly, like, I'm anxious every month because they don't have it. So then we have to find somewhere else. And then I'm like, but like, how can this be? Like, what is happening? What. So what keeps you going? Like, what keeps you grounded when you. Because this, even in this conversation, right? Like, it can feel so overwhelming or. So, like, what keeps your eye on the prize? Like, what keeps you focused?
- [55:55]
B
Yeah, I mean, I think a few things. One is the memory of my parents. I feel like they raised me to care about people, and they raised me. And their stories, I think, still are in the back of my head. They should have had a very different care and aging experience and life experience than they had. And I feel like they really showed that, interestingly enough, on that point. After my mother passed away, she published a book of poetry in Mexico in the 80s. And there's a poem that's in my name and I had not read it since I was a young adult, right. So I was going through it and I read it. And at the end of the poem, she basically asked me to devote my life to supporting older people. And I thought this was one of those cosmic moments that we were just talking about, right? Where, wow. She said that in a poem in 1980, before I was eight years old, and I had no memory of it. Right. And yet that became my calling in many ways. So that keeps me going. The second piece is, and I really believe this, is that we have to be motivated by love, not hate. We have to be motivated by what we want to achieve and create for our communities and our society and ourselves, not by who should not have access to it. Right. And so I would say a love of people and a love of ideas has always kept me going. I really. I can quickly empathize and understand a person's story and I can understand what I don't understand as well. But I'm always curious about that. Right. And trying to understand how does your story help me figure out the solution. And ideas. Right. There are many, many, many ideas that have not been either imagined or realized that, frankly could address all the issues. And waking up in the morning and saying, I will figure this out today is something that I think still motivates me, Robert.
- [57:45]
A
I love that and I love that idea. You know, two things you said, but one, you know, yes. Like the. The idea of all of us being together in this fight. Right. Like, all of us, like having different ideas and adding to things and. And being value. Right. Like, instead of this isolation thing. Right. I really think that so much of that is. Is what's important is recognizing all these ideas. And I love that, like, there's all these ideas that haven't even. And they're not ideas yet because no one's thought of them, but they could be great. Like, that optimism, I think, is. Is important and wow, what a way to bring this all together since, you know, place of, yes is grief. But to end with that piece of your mom who wrote a poem for you when you were 8 years old or published it when you were 8. And I mean, if that's not like the power of, like, the universe and the power of, like, mother, son, love and all of these great things, I don't know what is. I love that so much, and that must. It must just mean so much to you, right? To have those words of hers, it's humbling.
- [58:44]
B
It's one of those moments that you're humbled by the grace of it. And that's all I can say. It's humbling.
- [58:51]
A
Well, and it's also a little bit too. I always think of those moments a little bit. Like you think you have control in the universe sometimes, but sometimes the universe is like, hey, we're here. My husband and I watch TV or whatever, and the other day we're watching a movie, and we sometimes comment about how there's often, you know, child loss and whatever. So we're watching it. The main character lost his son, blah, blah, blah. And then at the end, they're like, yeah, he died of cancer, Jake. And we're like, oh, really? Like, sometimes it's hard. But I was like, I feel like that was Jake coming to us being like, hey, guys, I'm still here. Like, I don't know.
- [59:26]
B
Absolutely.
- [59:26]
A
Like, you lean into it and it's always around and it's. It's humbling. It's comforting. It's all of the things. Robert, thank you so much for being a guest on this show. I have. I feel like we could talk about some of these things forever. I am inspired by your work. I'm inspired by the things you are out there doing, and I look forward to following you and your substack and all of the work that you do. So thank you for being here. Thank you for listening to A Place of Yes. I hope today's conversation brought you comfort, connection, maybe even a little bit of hope. If it did, I'd love for you to subscribe and share this episode with someone who might need it to see you next time on A Place of Yes.