Navigating chronic illness is a challenge. Doing so without healthcare coverage heaps on more stress. Watching your parents go through this kind of challenge — Well, memoirist Nicole Chung wrote a whole book about the complexity involved. Mayo Clinic's Dr. Brenda Ernst joins Nicole to talk about the challenges and identity shifts that occur between parents and children when parents get sick.
We talked with:
We talked about:
In this episode, Dr. Millstine and her guests discuss:
Can't get enough?
Got feedback?
Dr. Denise Millstine: Welcome to the “Read. Talk. Grow.” Podcast, inspired by conversations with my own patients about what they are reading. On “Read. Talk. Grow.,” we discuss health by talking about books — especially fiction, memoir and creative nonfiction — that portrays or explores health topics. We use reading to better understand how it is to live with or navigate these conditions. In the same way that a book can transport us to a different historical time or into a less familiar culture, they can draw readers into various health experiences. On the show, we connect with authors and experts to talk about health issues, including those often considered hard to discuss.
I’m Dr. Denise Millstine, and I’m an assistant professor of medicine at Mayo Clinic, where I practice women’s health internal medicine and direct the section of integrative medicine and health in Arizona.
I’m the host of “Read. Talk. Grow.” and the medical director of the Women’s Health Blog through Mayo Clinic Press. I am always reading and love discussing books, so let’s get started. Our book Today is “A Living Remedy: A Memoir” by Nicole Chung. Our topic today is caring for aging parents and navigating the healthcare system. I’m so excited about our guests today.
First, we have Nicole Chung, who is the author of “All You Can Ever Know” and “A Living Remedy,” which was The New York Times Book Review Editor’s Choice, and has been named a best book of 2023 by Time, Harper’s Bazaar, Esquire, USA Today and Booklist, among others. Nicole is currently a contributing writer at The Atlantic and Time, as well as a Slate columnist. Her writing has also appeared in the New York Times magazine, Harper’s Bazaar, The Guardian, and many others. She was born and raised in the Pacific Northwest and now lives in the Washington, D.C. area. Her newest book is “A Living Remedy,” which is the topic of our conversation today. Nicole, welcome to the show.
Nicole Chung: Thank you so much. I’m glad to be here.
Dr. Denise Millstine: Our second guest is Dr. Brenda Ernst, one of my colleagues at Mayo Clinic. Dr. Ernst is an assistant professor of medicine and consultant in hematology, oncology at the Mayo Clinic in Arizona. She cares for patients with various types of cancer, especially breast and ovarian cancer. She is an educational leader, including as the fellowship director and hematology oncology at Mayo Clinic in Arizona, where she is a pioneer in teaching integrative medicine and fellowship in partnership with the University of Arizona. Brenda, welcome to the show.
Dr. Brenda Ernst: Thanks so much for having me.
Dr. Denise Millstine: “A Living Remedy” is Nicole Chung’s story as a daughter who’s a young adult when her parents both navigate illness in our fractured healthcare system while she is far away, starting a career and raising young children on her own. Our focus today will be on caring for parents with health challenges. According to the CDC, caregivers are family members or friends who typically provide unpaid, long-term community-based care and assistance to older adults and people with chronic health conditions or disabilities.
More than half of caregivers are women, and the majority are not formally trained. It’s estimated that the care they provide in the U.S. would cost $470 billion if it was paid care, and yet it’s not a role that’s commonly mentioned, never mind appreciated or revered in our society. Caregiving can look like many roles; from being at the bedside to managing people’s finances to helping with medical decisions.
It is incredibly challenging, even more so when the caregiver lives far away and has a dependent family of her own. If this sounds like a familiar scenario to you, “A Living Remedy” is a book you should absolutely read. Nicole, a patient mentioned your first memoir to me, “All You Can Ever Know” a few years ago. She is the adoptive mother of a daughter who read your book and asked her mother to read it so that she could understand her childhood journey and experience. I’m sure you’ve heard similar stories by readers before, and while “A Living Remedy” is not focused on the impacts of being adopted, it is a core part of your story. Can you tell our listeners who have not read your books a bit more about your family?
Nicole Chung: Sure. As you mentioned in the intro, I was born in the Northwest, in Seattle specifically. Unlike most Korean-American adoptees that you’ve probably met, I was born here, not in Korea. My birth parents were immigrants, and so they had moved to the U.S. a few years before I was born. So I was the first person in that family born on American soil.
So it’s kind of an unusual adoption in that sense, not all people expect when they hear Korean adoption, but still there’s a lot of overlap, I think, between my experiences and those of Korean-born adoptees. It was a transracial adoption. My adoptive parents are white. I was adopted in the early ’80s, which was sort of a different era of adoption. I think it’s important people know my adoption was completely closed, which is very common back then, meaning there was no contact, no information exchanged.
Topics covered in my first book, “All You Can Ever Know,” include my own journey to parenthood, which coincided with the search for my Korean birth family and what I discovered when I found them. My adoptive parents and I, I almost felt like I was raised on a little island with them because our community wasn’t large. And while we had a large extended family, we were the only ones, really in the Northwest other than my grandmother. My parents, I sometimes refer to them as the pioneers of our family. They struck out West. Most of the family stayed back in Ohio or various spots on the East Coast. It was a safe, loving upbringing, certainly. It was just the three of us. I didn’t have any siblings. It was also, in a lot of ways, like a lot of kids, I was sheltered and shielded from a lot of the harder things that they were experiencing.
Not so much in the first book, but very much in “A Living Memory“ because it’s so relevant to that story, I talk about how my parents both began getting sick with different serious illnesses while I was in high school and the impact on our family. So overall, I would say while it was a safe and loving upbringing, there were definitely things we didn’t talk about that I could still see affecting our family in different ways and spent a lot of my early life sort of searching to define or searching for language.
Dr. Denise Millstine: Those became more apparent as you became an adult yourself and had your own responsibilities. Brenda, Nicole’s mother had breast cancer while Nicole was in high school. Her mom was 44 at the time. Nicole starts “A Living Remedy” with this time, though she remembers very little of it since her mom’s treatment and course were pretty typical. She had surgery and then follow-up and was declared cancer free. How does such a young breast cancer impact families from your experience?
Dr. Brenda Ernst: It’s really a powerful time and also kind of an understanding when you introduce that into your book of how it shapes that family’s experience. The daughter of the person that’s going through it or the child, as much as the parent that’s concerned about the experience for their children and maybe even the spouse or the caregiver.
There’s a number of things that we worry about or concern ourselves with as the clinician or the physician team on how to best support families like that and how to really help the team share with the family and in some instances, the children or the spouse, the information that can be hard on the patient that’s making this journey themselves.
It does affect people at the time. Then oftentimes, when you reflect back on the different memories and in the scenarios for which a family weathers that storm, it can be quite impactful.
Dr. Denise Millstine: Nicole, you just mentioned or alluded to that this experience of your mother’s breast cancer was the beginning of your understanding of your parent’s tenuous financial situation, especially around their employment, which in the United States is tied to healthcare coverage. A couple of years later, you literally drive your mother to the hospital where she has emergency surgery that night, despite having had symptoms for several months and having delayed care because of her concerns about her coverage. Can you describe what that meant for your family and the hard choices that they had to make?
Nicole Chung: Of course. I mean, I think that I was, again, just unaware of the depth and magnitude of the problems for so long. When you’re young and healthy, which I was, and also really protective and loved in a lot of ways, which I was, it’s not like they were sitting me down and telling me step by step, this is what we’re concerned about.
So, like a lot of young people, I think I was trying to pick up clues of what was going on based on what I wasn’t being told, and that was true. Both of the financial hardship and also health emergencies that they were going through. My family was uninsured for most of my childhood. I remember when I was trying to apply to college, my mother saying something about how she needed to find health insurance for me. I was not allowed to be enrolled full time at a university without it, and I remember just being surprised. I didn’t really think about the fact that I wasn’t insured, didn’t see why a college should care. I’m always well. I’m never sick, so it’s fine. When they got sick it wasn’t necessarily computing for me that like there wasn’t coverage and this was going to mean medical debt that would turn out to be insurmountable for them.
When my mother was diagnosed with cancer it was a cataclysm. I just remember being afraid that she would die. Having all of those obvious fears for her physical safety and well-being. I didn’t begin to think about the financial impact till it started showing up in the months and years after that. I saw the accumulated stress and I heard them talking about bill collectors.
My mother and father both went through periods of unemployment after her cancer and then throughout the rest of my high school years, and so I was aware things were tight. Certainly. I remember my junior year driving my mother to the emergency room. It wasn’t cancer at that time. She had a number of reproductive health issues. She had endometriosis, she had fibroids, ovarian cysts, like pretty much everything you can have going on there except cancer at that point. And she had been having pain for months, which I didn’t know.
It’s not like she was telling me that, but it was a period of time where we were once again uninsured, and I cannot know for sure that that’s the reason she didn’t really get help. But she ended up with an emergency surgery instead of treatment. It was really difficult after that.
I think that surgery in many ways was actually harder on her than the mastectomy had been; kind of plunged her off a hormonal cliff, too, to be real, because it was an emergency hysterectomy and it was a really hard thing after years of stress, both physical and financial. So by the time I’m a senior applying to college, things at home are really unstable.
I had a part-time job that I worked and was sort of partly supporting myself at that point. It was just really difficult for my parents with health and financial issues to manage basic things like grocery shopping or cooking dinner, or the idea of paying for my college applications wasn’t really on their radar and I didn’t know what help was available.
It was a lot of me trying to figure out piecemeal solutions and them doing the best they could. But like so many American families, the stability we’d had was dependent on everything going right and everyone staying healthy, and as soon as that began to fall apart, not just my mother’s cancer, but my father was diagnosed with diabetes, it all began to snowball.
Looking back, that point of my mom’s cancer was really a turning point for our family. They wouldn’t really recover financially from the resulting debt.
Dr. Denise Millstine: I just want to highlight the point that your parents were very hard workers. Your father, in fact, even when his health started to be compromised, was working in the service industry on his feet. Every hour that he could be available, he would be.
Your mom, too, was reaching for a variety of different roles, and that because of the way our system is tied to certain types of employment in order to get healthcare coverage, particularly at this time, but, you know, even still true in many ways today, this is what limited their ability to access care at points where the treatments didn’t have to be so drastic and also the outcomes didn’t have to be so complicated and severe.
Brenda, I’m sure you have seen many patients who’ve delayed care for reasons of coverage, maybe waiting for coverage to kick in or achieving a certain age. Can you share with our listeners some experiences with that?
Dr. Brenda Ernst: Yeah, this is often something that we’re navigating, whether it’s an obvious, or out-loud discussion, or a quiet discussion that oftentimes, probably in your experience too, Nicole that isn’t had, but kind of understood that the reason a person doesn’t present earlier when they know something’s wrong is because they’re really trying the best they can to shoulder their other responsibilities, or they’re concerned about the downstream effects. We’ll sometimes meet young women at a time when they’re the mother to young children or the sole worker in their family, and they’re providing the income or taking the children to school.And they worry about how getting treatment for a breast cancer, or an ovarian cancer or another presentation that they might have might affect their ability to do that. And they’ll often say: “I don’t know who’s going to do this while I go and seek treatment. I don’t think I can.” And at that time, we really try as best as we can to come around them and find support systems.
Like at times maybe we’re mentioned to you by your family members at the later parts of your life, but it’s often with great distress. I know that sometimes for the first time I can see patients kind of open their eyes to the idea that people want to be a help. And that’s really something that through my practice I’ve understood is that when someone gets diagnosed with a serious health condition, sometimes there’s some shame or concern about sharing that with others depending on the culture that they’re from, and they don’t want to be seen as being weak or needy, but oftentimes they might not understand that your neighbors really feel powerless, or your close friends and family to help you unless they know. And then later on, just in reflecting on my own life and what I’ve seen in patients, is that we feel the worst when we see somebody is journeying through this alone in ways that we feel like we really could have made a difference. So it’s sometimes in those kinds of reflective discussions about the challenges that patients are having that I try to share that this is a time when your friends and family will thank you for giving them the opportunity to come alongside you and make a meal, or maybe carpool with the kids.
But it is a lot. And cancer, I think, unfolds even in my own personal life as I’m dealing with breast cancer and my mother, about how many things we take for granted in the challenges of just doing your typical normal, everyday life of getting to work and getting home and taking care of the home and the cleaning tasks and bills and things like that.
Cancer comes and blows that away and tries to disorganize and disrupt. It takes a while in a village, I think, to strategize around just doing the normal things. So it is challenging. Particularly to women, it’s a unique challenge, whether they’re in the caregiving space as you shared at times in your story and in your own journey, or they’re the patient that’s weathering and worrying about how their family, sometimes young children, will survive and thrive while they go through something that’s very difficult.
Dr. Denise Millstine: Brenda, you come to this discussion through the lens of seeing many patients with cancer, and as an internist, I see patients with all sorts of different chronic illnesses. Nicole, at the time that you had gone to college, you were literally very far away geographically, very far away from your family at this point. And this is where your father’s diabetes starts to manifest in ways that he can no longer really keep it completely hidden from you.
You start to notice some symptoms, some weakness, some slowing down, and eventually, because he doesn’t have access to care, he develops kidney failure. Talk about barriers he faced, you faced, you tried to help him navigate to getting care so that he didn’t end up on dialysis with that end stage renal disease, he could have hopefully had treatment sooner.
Nicole Chung: Yeah. Certainly, again, that’s what I was saying before. But when you’re younger and you’re healthier and you’re not actually experiencing symptoms, diabetes is such a pernicious disease because for a long time you do feel OK. And I think my dad had always been a relatively strong, hard-working person. And as you mentioned, he worked in the service industry.
Not a lot of breaks, not a lot of days off, was the first person called when someone else was sick, and not a lot of chances to get meals, or healthy meals, or exercise other than running around on his feet all day. So there were years where, between the work challenges and then again the healthcare barriers, because we were uninsured and because he was feeling generally OK, it was just hard for him to believe that would really change.
He started to feel more symptoms in his late ’40s and ’50s. These are the years when I was in college and just after graduate school, beginning to start a family. There was just one point where he was very, very sick. I just had my second child. She was a newborn and both my parents were supposed to fly out to the East Coast to see us and my dad couldn’t make the trip.
It was the first time that he just hadn’t felt physically up to travel. I remember being really concerned because I was pregnant. I hadn’t flown home in a little while, so I hadn’t seen him in probably over a year and my mom was trying to hedge a little bit, but she couldn’t hide how worried she was. And I specifically remember on that trip kind of talking with her in between my breastfeeding sessions and endless newborn laundry like: “OK, well, has he seen a doctor? I know there’s no health insurance right now.”
She had health insurance through a job that was about to kick in. “But, you know, he should really be seeing if he’s not well enough to travel.” And she said: “Yeah, look, when I go home, I’ll take care of it.” And on that very visit, her boss called and told her that she’d been laid off and that her health insurance was going to end at the end of the month.
And that was it. And I think of that sometimes as maybe what would have been one of the last chances for him to get help before things really began to snowball. So fast forward a year. My dad’s been unemployed, my mom’s been unemployed, they’re still uninsured and he’s just getting sicker and sicker some days. The fatigue was so bad he spent most of the time in bed and mom didn’t think it was just the diabetes she thought there had to be something else going on. And I remember investigating, like he’d applied for the Oregon Health Plan, the state Medicaid program, and they had been denied. They had applied for different forms of assistance as well, from rent to food stamps and been denied because they were young enough and didn’t have dependents at home that the state gatekeepers were basically like, “You can work, you just need to find a job.”
They were trying, but things were just getting harder and harder. I remember how resistant dad was to apply for disability when he finally did. My mother and I finally convinced him, like many people, of course, he was turned down and refused to appeal, like it had been hard enough to get him to apply in the first place. He was not going to. I just think it hurt his pride so badly that he was not going to appeal and they were sure they couldn’t get a lawyer to do that for them. So between all of the help and assistance being gate-kept and means tested and them just not meeting it, somehow things are really dire. My mother was selling plasma as often as she could and it still wasn’t enough.
I was a young parent. My husband and I were trading, taking turns in graduate school and they wouldn’t take our money even when I offered. And I don’t know what would have happened if dad had not gotten on the waitlist for a community health clinic, a federally qualified health center in their area. That was also a challenge getting them to go there. But it saved his life because when they finally were able to see him and have tests run and got him to see a kidney specialist who rotated through the clinic, the specialist was like, “Your kidneys have lost over 90% of their function. You should have been on dialysis a year ago. If you had not come in, you would have died.”
And between him and the nurse and his office, they were able to help my father get approved for dialysis treatments, which meant he would be approved for disability and Medicare. And that was the “first,” I’m putting in quotes, but like the first income and first health coverage that he had had at that point in years, it was absolutely lifesaving.
But it came so late that his condition was already life threatening. And my mother — and I think so much about what might have happened if instead of being granted as this like last ditch crisis response, if he had been able to get care and treatment and preventative care all along, how much longer or how much different would those years have been for him?
Dr. Denise Millstine: In many ways, diabetes is a very manageable condition. And you’re right that if you don’t live with diabetes or haven’t cared for or about somebody who’s had complicated diabetes, we might not appreciate the importance and the impact of it. But there are medications that can be used to keep it under control. But you have to be able to access them.
And I think you’ve highlighted so many components of what it is to be an adult child of someone who is trying their best in the system. But also it’s at the same time very, very proud and then trying to kind of keep some things or protect you from those because you, too, have a number of responsibilities at this point in your life.
And perhaps I think your parents didn’t really want to be a burden on you in some ways, as you’ve said in the book, and then just trying to connect the dots when you’re literally navigating a system that is not always transparent and you are so far away. Brenda, can you reflect on that?
Dr. Brenda Ernst: Yeah, I think there’s so many things that come into the patients that we meet and oftentimes we’ll see. And one of the things that you both mentioned, I think really speaks to me about identity. And so, so much about a person’s ability to ask for help at various times or even accept illness or change their pattern may be so tied to their identity of who they see themselves as.
And that’s so critical to us, as we power through life, to maintain a sense of self. It does make me wonder about your dad’s experience and even your mom’s experience, even your experience as the child of these two parents that were trying so hard to take care of you and take care of themselves, that some of those roles, they probably were so reluctant to give up if they could just hold on to the fact that they were doing a good job as a parent or, they were doing a very good job as a spouse and that might have prevented them maybe in some ways of sharing some of this information, that may have prevented them from sharing some of this information with you or others, because they might have seen the loss of their identity from changing to the adult, the parent, the employee to somebody that was sick or somebody that needed help or somebody that seemed weak or needy.
And I think that’s a lot of what patients grapple with is, “I don’t want to change who I am. How do I be in this space that this illness has presented me with, and how do I continue to be me or the person that I hoped I was going to be?” I think when we do a good job as physicians and healthcare team members, we help patients thrive in that environment to maintain who they are.
And that’s what I work with, with my patients in particular, is whether I meet them with a curative breast cancer or whether I meet them in a situation where this is a lifelong illness like diabetes or in some cases a really challenging illness like metastatic breast or ovarian cancer, where we’re going to have to endure a lot of changes to the life around them and their family is how do we make sure that you see yourself as who you are, and how can we preserve that as much as possible?
Because I think in that space people feel more comfortable seeking help and maybe even participating in the changes that are around them that allow them to do better.
That, I think, is the challenge on us as healthcare team members is how to also see our patients for who they are, not only the disease that we’re trying to treat and help and assist, and it’s a very costly system. Some of those things are challenging for us to kind of solve too.
Nicole Chung: I was going to say I thank you for pointing all that out. I’m just like sitting here nodding because I hadn’t thought of it in exactly those terms. But you’re so right, of course, about the way we see ourselves, our identity when we come up against a crisis. One of the first things we want to reassure ourselves of is that we are still who we are, and we’re going to meet this as the people we’ve always been.
But the truth is, crisis changes us sometimes. It just has to loose changes like the circumstances of our lives and the roles that we see ourselves in. I was thinking for both my parents, but I mean, because it’s more recent, I suppose, I’m thinking a lot about my mother when her breast cancer never returned. But as I write in the book she dealt with, it’s hard to classify it, but essentially ovarian cancer later in life.
And at that point, I think the main way she saw herself was as my parent, or at least when you zoom in on our relationship, there are so many points where she was like, “I don’t want you to worry about that. That’s not your concern.” And I remember feeling so frustrated at times, and I read a little bit about this, but it’s like, who are you going to talk to if not me?
At this point, my father is already gone and he’s been taken from us. And she was diagnosed with ovarian cancer that same year actually, that he passed. I was like, “Who else are you going to have these discussions with? This is my responsibility. Like, let me do this. Let me be your daughter.” And it was so hard for her because she saw herself as my parent.
And for her, that meant protecting me and shielding me and not letting me step into any kind of caregiving role. And I remember thinking, “Is it that you don’t trust me?” But I don’t think that’s what it was. And when I finally realized that, it was a little bit easier to deal with it because I was blaming myself for things I couldn’t do and wanting to do what little I could.
She did accept my help and I write about managing her affairs and handling her finances and all that when she wasn’t able to and being a go-between her and her doctors despite not living there. I would have my conversations with her oncologist or the radiation oncologist. And then it was my job to kind of translate and give that to her in a way she could understand, given how overwhelmed she was.
And I was really grateful that she finally allowed me to do that. But it was definitely a challenge. And it’s precisely because of what you just said about how she saw herself and then how she saw our relationship. And I think that’s a challenge many children of sick or aging parents must experience where you might feel: “Okay, I’m ready. This is my responsibility.”
Because, of course, in this country, we kind of put it on individuals and families instead of dealing with so many of the systemic issues. So you feel like it’s all on you and you want to step up. And sometimes one of the barriers to that, in addition to all the practical barriers, is the emotional piece of your parents. Can your elders allow you to step into that role? Can they accept what that means?
Dr. Brenda Ernst: Yeah, I think that’s very, very true and it resonates with me as a doctor and it resonates with me as a daughter. Someone introduced me recently to this concept of this sandwich space that you’re in, and in your book, I think, really unpacks that a little bit of how you’re trying to be the mother to your children and you’re observing your mother be the mother to you all in that same space.
Then almost in some unvoiced way is the understanding that your role as a daughter has changed. And that happens, I think, naturally for all of us when we recognize that our parents, who have always taken good care of us, need care from us or responsibilities from us, that we can help them. Also just the nature of whether our parents are ready also to accept that change in that role, because it doesn’t seem as natural to us to kind of come out of our space that we’ve spent a long time in, whether it’s the parents’ space or the child’s space and navigating the emotions around the illness as well, the nature of the burdens of cost and challenges with symptoms. It’s a very tough time.
I think that open conversations have helped a lot. That’s really where I try and engage my patients oftentimes to invite their family member or their child into the conversation. Then really maybe where we can try and talk about that this isn’t about their needs only, but about building that relationship so that it is what it needs to be at the time we need it.
That’s something even in my own life that I’m experiencing too, this understanding who we are. Our identity is different in the different spaces of our journey, and then letting that relationship kind of grow into what it needs to be.
It sounds like, especially through reading your book, you had such a beautiful relationship with your parents that at times it wasn’t as visible to you. But maybe in reflecting back as you wrote your book and think about that story of your upbringing that there is so much love in what your parents brought to your experience, your childhood, and even in the challenges; how you wonderfully depicted in your book and kind of reflect back on how that came to be in a very practical way. That, to me, was so telling to the life experience that I see with my patients. And oftentimes at the end of life is when we can perceive it sometimes.
But I really appreciate your brave and courageous telling of your story and your parents’ story through your book. It was something I really enjoyed being able to see as both a daughter and also a doctor.
Nicole Chung: Thank you. I mean, that means a lot. And I also just appreciate what you’re saying about how you try to involve the patient’s family and you’re sort of — obviously the patient’s your priority, but I just think that would have been really meaningful and helpful. I think back to when I was in high school trying to figure out what was going on in life by reading context clues. I found the combination of my mother’s doctors really hard toward the end of her life.
Obviously it was, and it’s like I almost had to turn the emotions off a little bit to be able to grasp the information so that I could share it with her. My mother was a very capable person and had more experience in the medical field than I did. She was a respiratory therapist for years, but toward the end of her life, the cancer had metastasized and it was in her brain and it was just much, much harder for her to follow. Also, she was deeply overwhelmed, as anybody would be. I remember specifically the doctors who were very compassionate and patient with me and were able to kind of explain things and recognized what upheaval we were in. And I also, honestly, to be frank, I do remember one or two doctors who I had a harder time communicating with. But it just meant so much to me.
I still remember the compassion of the healthcare workers and also social workers and hospice workers, and I acknowledge them in the acknowledgments of my book for that reason. We wouldn’t have gotten through that time without that kind of support.
Dr. Brenda Ernst: You mentioned a little bit about what it meant to you, even though you were kind of a different faith perspective, but having the community around your parents and your mom, especially towards the end of your book and what that meant. And I think, to me, it really was visible how much of a village is really needed to care for each other in the various times that we go through life and just being cognizant of who can be a village to the patients that are around us and trying to let those in and recognizing now, in the United States, oftentimes we are far from family as is the case in my own life.
Leaning on that village can be different from far away, and I’m very thankful. Oftentimes for technology at Mayo Clinic, we’re able to do a lot of video visits, and that may allow us to put family members all into the same conversation. And sometimes that’s what I utilize to talk about chemotherapy or big care decisions because I can have somebody join me from Seattle and Texas at the same time, and in doing so, it allows family members to have a window to maybe what wouldn’t be shared, or maybe what’s really difficult for a patient to share sometimes.
I’ll invite a family member to the conversation and I’ll ask a patient, “Would it be OK if I talk to your family member about what you’re going through so that it’ll make it a little easier for you?” Because sometimes I think probably in your experience reading your book, it’s hard to tell a child or a spouse or a sibling, “I’ve been diagnosed with cancer.” It almost gets to the core of: “This is real and I’m stuck in this space that I didn’t ever want to be, and I don’t know how I’m going to get out of it.”
And so sometimes partnering with us I think is really important that family can be involved, or others can kind of know. That’s probably the biggest challenge I see when I meet with people later in their journey, is that sometimes family members just don’t know what’s going on. It really helps if we can try and involve others and we try and empower patients to share what they can. Really respecting their identity, as I mentioned, but helping others not stay in the dark because it can be really stressful, as I think it was for you.
There’s this balance of how much children or young teenagers or young adults can cope with as far as the strain of something big like cancer. We try and balance that. The social work team helps us a lot, and there’s various programs. I think when families know about that they can be quite supportive. But it’s a lot on a patient, it’s a lot on a family, and so having those discussions is really empowering.
Nicole Chung: Yeah, I understand certainly why I wasn’t in touch with or in the room with my mother’s doctors as a high school freshman. I was really grateful that she allowed me to have a direct line to them. She basically signed a form saying that they could discuss anything about her situation or treatment with me, which honestly surprised me a bit because I think she did it partly to get me off her back because after every appointment I would be like, “Can you call and tell me what they said?”
Or I started asking her to put the phone on speaker and let me hear what the doctor was saying, and I think she got so irritated with that that she was like, “Just talk to them yourself.” And so this is how I ended up having hours-long discussions with her doctors. But I was still thankful to have that direct line.
I’ve experienced this as a patient myself. Like if I don’t take notes while I’m talking with a doctor, I am not going to remember later what they said. I had very minor surgery a few months ago, everything is fine. But I was scared. It was the first surgery I’ve had probably since my tonsillectomy as a kid.
I remember just trying to talk with the doctor and ask my questions, and if I hadn’t really been paying close attention and taking notes, honestly if my spouse had come with me to help remember things, I’m sure I would have held on to like a fraction of whatever the surgeon told me. So I was really glad to be able to get the information directly from my mother’s doctors and just kind of know what was going on, especially when she got to a point where it was harder for her to understand and then to translate that to me.
Dr. Brenda Ernst: That’s such an important part of our experience and why it’s so helpful to have either a family member or friend join you on various parts of your healthcare experience. If it’s meeting in the diagnosis or asking questions, I’ll really ask my patients to try and bring someone with them to the visits, because it’s hard when you’re not feeling well, or the strain or stress of an experienced cancer or otherwise.
I even have that same impact when I walk into a physician’s room, and I know that time is kind of short and there’s a few questions that I’m hoping to get answered. And sometimes, I forget what it is that I really wanted to ask. And so I’m always grateful when patients have kind of a list of the things that are concerning them, or especially when a family member can say, “You know, oftentimes, mom, you usually notice that this is happening.”
It’s like another observer that helps us care for patients. And it’s so important because there’s so many different parts of the way of taking care of a person. Then what happens in that 15 minutes in a doctor’s appointment, or even in the hospital? If a person’s in the hospital for a couple days, there’s so much more to a person’s life experience at home. So having that extra person in the room or even on the phone call, I think always yields to me a better way of taking care of the patient themselves too. And I think we all just feel that connection. Less loneliness, just knowing somebody else is there on that journey with us. I think that that was probably a big part during your time caring for your parents from afar and being kind of at a distance. It’s difficult to not be able to be in the same situation that they’re in, but still be able to care for them in the way that we are and that you did.
And I just wanted to kind of recognize that, too, because when I was reading your story and the impact of the pandemic and how hard it was for you and so many others to just be so far away and, in a way, shut out from what you wished you could have been able to do if life had dealt you a different set of circumstances. Also recognizing there was so much you were still doing at that same time from afar and caring for your parents. But it was certainly the most challenging time. I think our recent society has had to navigate and that we often times were figuring out how to do that from afar.
Nicole Chung: I appreciate the acknowledgment, especially because I spent so long sort of beating myself up for not being able to be with my mom. She started hospice care right as the first coronavirus cases were being reported, and my trip to see her was like March 13th, 2020, that I wound up canceling. As obviously a really hard time I felt like, I just remembered thinking, “This is so unfair to us and to so many families who are going through this same situation right now.” If she were sick or dying and like almost any other time in the last 50 years, I could be there. And it was hard to accept. Sometimes it’s still hard to accept what I couldn’t do.
And at the same time, I think she knew and I think she understood how I felt. And we had already spent so much time together and a lot of time talking about what she wanted and what she needed. And I’m thankful we were able to have those conversations right about everything from her advance directives to her end of life wishes. She was adamant about staying at home and staying in Oregon. These were wrenching discussions to have, but at least we’d had the opportunity. And I remember thinking, like with my father, he was sick for years, but his death was a surprise to us when it happened, and we weren’t really prepared. I felt like with my mother, at least, at least I knew what she wanted and I could make sure her wishes were honored, and that was very important.
It was a really difficult time, and I still think about all the people and all the families who were separated from loved ones, especially during those early weeks of the pandemic, when it was just so hard to travel. It definitely changed so many things about that time and about how my family and I were able to grieve.
Dr. Brenda Ernst: Society is faced with unthinkable questions that make us struggle through decisions that we ultimately had to accept. Oftentimes there weren’t even decisions to be made. “Should I go or should I stay, and what would I be risking? What would I be bringing home? Would I make my family members sicker if I brought them an illness mistakenly?”
And then also what policies and things that were in place to navigate around them? Questions that didn’t have answers, and just how hard it was in the actual day-to-day experience of the struggles that you describe in the book of just going through this diagnosis and illness and aging process with your mom, but also in the midst of really previously and unrecognizable challenge and social experience that no one had ever contended with.
And how it was really clear and evident that both your mom had spent so much time in often what you speak about with your father, to knowing you and seeing you, and probably equally how you reflect back your ability to see them in both, like a really, I think, fresh and genuine way. The realities of the challenges and emotions that came through that period and experience for you, but also just in the way you honor them, about the way they had to face the challenges and the way they did so with such strength.
And I think that that’s also really important to seeing parents or individuals, patients that go through something so challenging is that we’re all doing the best we can with what we have at the time to make these decisions, and we try and reach out for help when we can have it and we power on with what we can get. I think it reminds us of your story, particularly as doctors, the other side of the examination room, like what patients might need from us or could really see as valuable in the conversations as we support them, and especially the things that we learned through COVID and through detached family members through this process.
Nicole Chung: I definitely think that was maybe the most challenging aspect of writing a book and writing memoir generally is portraying the people that you know and love. You can almost never capture exactly what you want to capture. And of course, it’s all filtered through my perspective. Like my mother was very close to her sister.And if her sister wrote a book about my mom and their relationship, my mother could come up as a completely different person. Honestly, like we’re all different people, kind of to the people who know and love us. But I did really want to show their story, too, and like who they were and who they were before they got sick and before we could begin facing these types of challenges together as a family. Like who we were together when we weren’t in crisis.
Because I actually don’t see their story, as hard as it is and as much as I miss them, like this American tragedy, I’ve sometimes seen the book cast in that light. And, to me, there’s so much more than that. And the story of our family is so much more than that. And the families of your patients, no matter what they’re doing, or what the outcomes are. I see so much in my parents’ story, like love and struggle and resistance, and hope, and a very dark humor, and just a lot of other things that made them who they were. And in some ways, of course, I wish it hadn’t happened the way it did, but in some ways, like their illnesses and their challenges, it just made them more who they were.
Like my mother’s fierce love and her stubbornness and her very dark sense of humor. All of that was heightened, ratcheted up. And we had some conversations when my father was sick that we might not have had otherwise. I’m not grateful that he was ill, of course, but I’m grateful for that. So I think there’s so much more to anyone’s story than what makes them sick or even what kills them. But it was really important to me to kind of show them in their full humanity as I knew them.
Dr. Brenda Ernst: That’s how powerful it is.
Dr. Denise Millstine: It is really so powerful. And this is such a beautiful story and you are such an amazing writer, Nicole, that I hope our listeners who have not yet read your work will really look at it from the light of what it is to be a daughter, caring for parents, caring from afar, also just recasting how it is to navigate through the healthcare system and all the different roles people in your community were able to provide for caring when you couldn’t be the boots on the ground. I think this is such a powerful, really well-written, amazing book. I want to thank you, Nicole, for writing it, for putting it into the world. I want to thank you both for coming on. “Read. Talk. Grow.”
Nicole Chung: Thank you so much, Denise and Brenda.
Dr. Brenda Ernst: Thank you. It was really nice to visit with you and meet in person. And I wish you the best. And I appreciate your ability to share this really powerful story with us.
Nicole Chung: Thank you.