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Hi, I'm Megan, and I've got a new podcast I think you're going to love. It's called Confessions of a Female Founder, a show where I chat with female entrepreneurs and friends about the sleepless nights, the lessons learned, and the laser focus that got them to where they are today. And through it all, I'm building a business of my own and getting all sorts of practical advice along the way that I'm so excited to share with you.
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I've been with my spouse for about 35 years now. The hardest part about this whole thing is losing and grieving your loved one. There's layers of cognition and all her personality you kind of strip away and fall by the wayside. And then as well, myself, I don't have any life left. My life is all about taking care of her.
We've been married 29 and a half years, and the stroke left him paralyzed on one side. He's unable to speak. He can't swallow. He speds through a tube into his stomach. He can't walk, talk, or move himself from a bed to a wheelchair. We've been together so long that all of a sudden, half of you feels gone. There's no one to speak with you. There's no one to help.
Being a caregiver to a loved one is emotionally draining. But when that loved one is your spouse, it's a whole different thing. For many spousal caregivers, it can mean losing your best friend, your partner, the person you're most emotionally intimate with. And with that comes so much uncertainty.
In my husband's case, he has brain fog. He has sleep problems, chronic pain, migraines, irregular heartbeat. It's sometimes a roller coaster. So some days are better, some years are better.
We hope his gets better like it used to be when we first met. That's Kim Moy, our guest today. Kim is part of the roughly 12% of family caregivers in this country caring for an ill or disabled partner. Compared to other kinds of caregivers, spousal caregivers usually provide more hours of care, have more intense care-related tasks, and do it all with less help.
Kim and her husband have two kids who were very young when his health took a downturn. Around that same time, Kim was also helping to care for her aging parents. We've talked about the sandwich generation on this show. Today, we're talking to Kim about what she calls being in a pressure cooker. The tension and stress building from all angles while caring for her older parents, two young kids, and a spouse. ♪
This is Uncared For. I'm your host, Soojin Park. So Kim, let's start back a bit. I want to go back to your childhood. Now, I understand that you grew up in a multi-generational household. Tell me about that. Who lived with you and what that was like? Yeah. So my parents are immigrants.
And I was the first generation born here. And so for me and my sister, in our situation, it meant also growing up with two of our grandmothers living with us for periods of time, for many years, actually. And so the first grandmother that came to live with us was my mother's mother.
And it was great. I actually really enjoyed being with her and actually, you know, of course, wonderful cooking. And then at one point, my mother told my father, hey, your mother is getting old. We should bring her to live here with us. And so he had to fill out the paperwork to bring her from she was living at that time in Hong Kong and brought her over to come live with us.
Which is a big deal if you could think of it, bringing your mother-in-law to live with you.
Not everyone would go for that, but it was part of the Chinese culture and tradition to take care of your elders. Was there always the assumption that you would take care of your parents? So when my two grandmothers were living under the same roof as, you know, my nuclear family, they occasionally would get into arguments. And it was really interesting because
how this happened because they spoke completely different dialects of Chinese. With the two grandmothers? Yes. So it was more through body language and just hand signals that they would have these conflicts, which was really challenging. And at one point, my dad turned to me and told me privately, Kim, I don't want to live with you when I'm older.
That's just too much to ask. So he told me point blank. But Kim was really close to her parents and was ingrained with the idea that you take care of your elders. So throughout her life, from high school into adulthood, Kim still pictured her parents moving in with her one day.
In 2010, the same year Kim's second son was born, her mom was diagnosed with Alzheimer's. Her parents eventually downsized, moving from the house Kim and her sister grew up in to a condo in a retirement community. But over the years, it became evident that her parents needed more help.
In fact, what happened was my parents, being very thrifty Chinese Americans, were saving food and they had spoiled. And then their eyesight was so bad that they couldn't see that it was spoiled. So they were eating spoiled food and then got food poisoning, basically. So my dad had to go to
to the hospital. And then my sister then had my mom live with her for like two or three days. And then she could see how bad it really was because my dad wasn't telling us. He didn't want to worry us. He just kind of tried to manage everything on his own. And then my sister could see how bad my mom's memory was and how hard it was hard for her to function. Yeah.
So she's like, Kim, we really need to get help. I said, absolutely. I had no idea it was that bad. You know, when you visit them on the weekends like I was or you talked on the phone, they can cover it up a little bit. Right. Until you actually spend a lot of time with them and then you can see, oh, my God, it is really bad.
So then we started with hiring a caregiver who would come in, you know, at first it was four hours a day and then it became six hours and then in eight hours. And then my mom was waking him up in the middle of the night and she had a nightmare once and she didn't know who my dad was. She thought he was a stranger. It was that bad. Can you imagine your own wife thinking you're a stranger in the middle of the night? I mean, it just really breaks my heart.
My dad was really reluctant to tell us about it. You know, when we heard that, we're like, oh my gosh, we really need to hire a caregiver for night shift now. And then we did that for a while. And then we realized like, hey, this is getting really expensive. We need to turn to assisted living. Yeah.
So I can now see the trajectory of how you started off with the expectation and the real desire to take care of your parents. And then once you realized how far along your mother was with Alzheimer's, is that when you decided, okay,
they can't live with me. I'm going to have to come to terms with this. Did that realization come slowly? Was there a conversation you remember, a moment? Well, even though I knew my mom had Alzheimer's, I still clung to this idea that she and my dad were going to live with us. I still clung to this idea. Why? It just felt like it was something that
I had to do or I needed to do is not obligation. It wasn't obligation. It was I wanted to do it. Yeah, I wanted to do it. And we had just moved to a new house. I had already thought, oh, this is the guest bedroom. It's on the first floor. It's near my bedroom. It's near the kitchen. This would work. I actually thought it all the way through and asked my husband. Oh, and I measured the doorway. Oh, my dad's walker can go through all of those things.
And I told my sister about it. She's like, are you crazy? Crazy. And I thought, I know, but I really want to, Lisa. And she says, you cannot do that to yourself. You are going to sink and drown. You're barely keeping your head above water right now. And I know people do it. But in my circumstance, I also had two young children and a husband who was so sick who could not work and needed a lot of care too. And so I finally had to admit to myself that it would just be too much.
So I ended up not doing it, but visiting them, you know, very often on the weekends because they lived an hour away from me. But yeah, I thought I would do it. Were you okay with that decision? I still, I mean, I'm still cheer up thinking about it. Yeah. Yeah. It's difficult when you know you're making the right decision, but it still hurts.
Kim knew her sister was right. She was barely keeping her head above water. Helping her husband was taking up more and more of Kim's time. When we come back, Kim tells us about her husband's illness.
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Kim wasn't able to have her parents move in with her as she'd always wanted because she had too much going on already. At the time, she had two young kids and her husband has a debilitating chronic illness called myalgic encephalomyelitis, also known as chronic fatigue syndrome. It causes deep, unrelenting fatigue, which is worsened by physical or even emotional exertion.
The way I describe it is it's like a battery. So you have a battery, but people with this illness can never be fully charged. They may be at 20% or 30% on any given day, more or less, depending on how bad the illness is for them. Whereas you and me, we can sleep and rest and
And then we're fully charged. No matter how much sleep or rest, they're never fully charged. It's like having a case of the bad flu all the time. In addition, a lot of people have many other debilitating symptoms. In my husband's case, he has brain fog. He has sleep problems, chronic pain, migraines, irregular heartbeat. Like it's all the different body systems. I joke with him. It's like, yeah, what body system do you not have a problem with?
You know, so we see so many different doctors, right? Okay. So, you know, we've done a whole episode on sandwich generation, which means that you're caring for young kids, you're caring for elderly adults, but you are also caring for your husband. So this is got to, we have to have a new term for what you're dealing with. Tell me about
this time, caring for your parents, your husband, your kids? How old were they? What does a day-to-day look like for you as you're also taking care of your husband? Yeah. As you mentioned, a lot of people talk about the sandwich generation. And when I explain to people my situation, I call it the pressure cooker situation. Right.
And so I was getting in all directions, you know, taking care of my parents, even though they didn't live with me. There's still the constant worry. And that is a type of caregiving. I hope people recognize that. Right. Even if they're not living with you, you're still caregiving in a certain way. I was caregiving for my two young children and they were, you know,
Oh, gosh, they were like starting around kindergarten age is when this all started to happen. I was also managing a team at work at a Silicon Valley company where they're pretty intense. Right. And then my husband. So getting back to this pressure kicker situation, you know, I felt like I was being pulled in millions of directions. Right.
You know, it's one thing. It's like, oh, I have to take care of the kids, make sure they're, you know, getting up in the morning, you know, eating breakfast, taking them to school. At the same time, we all, the whole household has to be very quiet so my husband doesn't wake up because he hardly can sleep. So he finally can sleep and then we don't want to wake him up. You know, it's those kinds of things there. You feel like oftentimes you're,
Walking on eggshells because you're waiting for something else to drop and you're on high alert all the time, right? Something's going to happen where you then have to respond. So that also leads to, again, the burnout, I think. Yeah.
Being on constant alert, always expecting bad news around the corner. I'm very familiar with all of these feelings. My husband has Lyme and Maso, which are both autoimmune diseases. And you never quite know what you're going to wake up to day to day. It's really hard to ever feel like you're on solid ground.
This kind of uncertainty feels ever present for Kim too, but it wasn't always that way. In the early days of their relationship, her husband's illness was still manageable.
By the time I met him, he was able to hold a job, you know, and he was able to even do some yoga. And he was able to go salsa dancing with me, which I loved at that time. We could go salsa dancing. We just could not dance every single song like I wanted to.
And he could maybe dance maybe one song and then take a rest for two or three and then dance maybe another song. So he would take breaks. Right. And like, OK, well, we can still do this. This is amazing. I even found someone who knows all the dance. Right. We used to go out to eat a lot, you know, before kids. Right. We loved going out and trying new restaurants. Right.
Now, he can definitely not do salsa dancing. And when we go out to a restaurant, it's a big deal. It's like maybe once a month we can and everything has all the stars have to be aligned, like he has to be well rested enough and all of these things. So then tell me throughout your marriage, the illness started to really ramp up and kind of talk me through how it got to what
it is today. So I think when we first met, it's what you would say he was in the mild side because he was still able to work. Yeah. And he was still able to salsa dance, you know, and do all these things. And then several years later, something happened. We don't know what triggered it exactly. But about the time when our second son was maybe one or two years
His health took a nosedive where he started getting migraines where he didn't have them before. And he actually got vertigo. I had to take him to ER a few times for that. It was that bad. They couldn't figure out what it was. And then he tried to go back to work and he was able to work. But then what he found was that he was so wiped out in the middle of the day. He had to come home early and then rest or take a nap.
And then put in a few more hours at night, like after dinner. And that went on for several months. But it got to the point where he just couldn't hang on. And we had to do a short-term disability leave of absence for health reasons. And he tried to go back work after that. Couldn't do it. So then we were like, okay, fine.
He's going to have to take long-term disability and be at home. Yeah. And that was so painful because he loved that job and he had to walk away from that. And that was, I'm guessing by your kid's age, I mean, over 10 years ago. Yeah. Yeah. And so I know it's never like a linear line of like, it's getting worse or it's getting better. It's always a little bit. Yes. Within the range. Yeah.
Right? It is so hard to describe what this is like, especially when you see pictures on social media and you're at the occasional events, you know? And so people that maybe don't know you are like, they seem fine. He's, you know, he doesn't, nothing seems wrong. And then, you know, you get into this daily stuff we're talking about. I think it's important to paint the picture and to
bring visibility to this. Thank you. I just wanted to say that. Thank you. I see you. I know what the subtext of everything you're saying. But okay, so for the past 10 years, your husband hasn't been able to work. What are some of the other things that this illness has kept him from? Oh my. What can't he do? So much. And I pause because it's...
There's grief that comes up when you think about it. Lots of times I just try not to even think about it, to be honest, because it's so much, there's so much grief. He can't be the father he wants to be. That's where it cuts the worst. It cuts the deepest. He can't be the father he has always wanted to be. Before he got really sick, he used to take our son to the playground every day. He loved that. You know, now he...
I had to take the kids out to Cub Scouts myself. And he was never able to attend any of the meetings, let alone go camping. He's unable to do a lot of things where he would want to have been much more involved with our kids' lives. And I tell him as his wife, I'm like, yes, yes.
You can't be the father you wanted to be, but you're still an amazing father. You are still giving them a lot of guidance. They see the strength in you. Despite this illness, you are still keep on going on. Yeah. And I think it took him a while to see that. I had to say that many times. I still think he has a lot of regrets, right? That he can't do a lot of things with them and for them.
And so having to let go of these dreams has been very, very challenging for him. And for you. Yes. Yes. Yeah. Because I think that, you know, this question of like, what's something about being in this caregiving position that
with this type of illness as a spousal caregiver is unique. And I think that the biggest thing is this thing you write about, which is this ambiguous loss. Yeah. And I had never heard that term. And I read it and I was like, all like the hair on my body, you know, is standing up. Talk about ambiguous loss. Oh, yes. When I first heard about this term,
term, same reaction from me. I'm like, oh my God, they're talking about me. This is my life experience. There's a name for it. And it just resonated. Ambiguous loss is where, so the person you're caregiving is still there. They're still alive, but you've lost what they used to be. Maybe it's an aging parent. Maybe it's a loved one who is now chronically ill or
It's unlike traditional grieving in the sense that ambiguous loss lacks closure. Like the person is still there, living there, but they're just not the same person that you have known them to be. So, you know, when someone passes our culture, it's expected that you grieve. Here, the person is still alive, but you still have a lot of grief.
oftentimes unresolved because it's ongoing. Where do you think you feel the loss the most with your husband? You know, is it as a partner? Is it as a salsa dancing, you know, partner? Is it a friend? Is it as a co-parent in the way that we traditionally think? Where do you think you feel the loss personally the most? Yeah. Oh, that's such a great question.
It's definitely as a partner, as a husband, right? So the wife-husband relationship. For me, it's about having that kind of emotional intimacy that it's your best friend slash partner in life and being able to talk about anything. I mean, I still do, but they're in such small snippets and it's always in between everything else. And it's really hard to find a time where
When he doesn't have brain fog, you know, or is not in immense pain. So there's such small windows throughout the day. And so it's just really hard. Like I had to pick. Right. And then sometimes like when he's available, I'm not available because I'm in a meeting or I'm running an errand or I'm. So that part is really, really hard. Yeah, I think that's probably the hardest part.
The dynamics of a marriage can change so profoundly when you're a spousal caregiver. And the grief is ongoing. You're constantly getting used to a new normal. After this short break, we'll hear how Kim has learned to let go of the way things used to be before her husband's illness got worse. You can't have the old way anymore. It's just a fact of life. It's not coming back. It might, but you can't hold your breath.
Hello, I'm Joel Brevelt, medical myth buster and host of The Dose, a health policy podcast from the Commonwealth Fund. Each season, I sit down with a leading health policy expert and medical professionals to have real conversations about the issues that keep them up at night. We talk about breakthroughs in their research and their new ideas to make our health care system work better for all Americans. This idea of equity needs to be taken up by everyone.
And wherever you are in your work, whatever sector that you're in, we need to have conversations about what tomorrow looks like. I hope you'll check out The Dose and enjoy listening to our interviews. You can find us at thedose.show or by searching your podcast app for The Dose from the Commonwealth Fund.
An Australian hiker travels to the American West to walk a wilderness trail. Wasn't afraid to be out on his own. But Eric Robinson vanished in the high Uinta Mountains. I remember thinking, Eric, what were you thinking, mate?
I'm Dave Colley. Join me on my podcast, Uinta Triangle, where I travel the world to answer the question, what happened to Eric Robinson? Follow Uinta Triangle. That's U-I-N-T-A Triangle on Apple Podcasts or wherever you listen. I think part of the ambiguous loss is this constant state of limbo. Yes. It's such a stressful and I would say unnatural situation.
place to live. It's a natural place for a relationship to thrive. It just doesn't feel like the way that you thought that family life and relationships were going to be. How do you personally deal with this loss?
I actually am a student and practitioner of Zen Buddhism. And so in Buddhism in general, we talk about suffering. Why do we suffer? We suffer because we have attachments. In the case of caregiving, you're attached to the way things used to be.
You may be attached to the way this person used to be. You may be attached to how your role used to be in a family. You may be attached to the way your life used to be where you didn't have to think about going to so many doctors and thinking about all the things, right? Juggling all of the things and making all those trade-offs. So when you cling to those things that you're attached to, you then suffer. Mm-hmm.
Because you can't have the old way anymore. It's just a fact of life. It's not coming back. It might, but you can't hold your breath. You know, in the case of my husband's illness and in many illnesses, it's sometimes a roller coaster. So sometimes some days are better. Some years are better. We hope his gets better like it used to be when we first met. Yeah. We don't know if it's going to happen.
So in the meantime, don't attach to how things used to be to when I used to be able to go salsa dancing. Instead, the idea is to practice non-attachment, meaning, okay, I had that before or it used to be that way before. This is now. I need to deal with life the way it is now instead of thinking it to the past and attaching to that. You know, the other thing is you can still have grief sometimes.
and you can still enjoy life. So that's holding two things that may sound diametrically opposite, but you can have both things in your life at the same time. After years of working various high-stress jobs in Silicon Valley while caregiving for her husband, kids, and her parents before they passed, Kim made a pivot. She decided to pursue her real passion, supporting caregivers. ♪
Now she runs a monthly support group and has a website, Caregiver Wisdom, which focuses on family caregivers of loved ones with chronic debilitating illnesses. Kim offers workshops and one-on-one coaching. She says supporting other caregivers is her passion. It fuels me. It gives me energy. I'm with my people. I do it for other people. I also do it for myself.
But I really do it because I don't want people to feel so lonely. I don't want them to feel like they have to figure it out all by themselves. There's so much power in community. You know, you talk about this pressure cooker environment as a daughter to elder parents, as a mom, as a spouse. How do you think as a society or as a country we can do better? We talk about
It takes a village to raise a child. And I think a lot of people believe that. We need to start thinking about it takes a village to support our aging parents. It takes a village to help take care of our ill loved ones. It takes a village.
It shouldn't be just one caregiver, right? It can be everything from other friends, other family members, and then concentric circles out, right? It should also be other agencies and healthcare, right? Systems, right? I think if you just focus on the idea that it takes a village to help people and
And not assume that, oh, it's someone else's problem. There are a lot of services out there and people don't know about them. And in my case, you know, I've hired paid caregivers out of pocket too, right? Because it's just too much for one person.
Please don't take everything on yourself. So have you made plans for your own long-term care? Can you talk about that and if this whole experience so far in your life has affected and influenced how you look at your own long-term care? Yes. I've been actually worried about it because Alzheimer's seems to run in our family, my mom's side.
So I actually have talked to financial advisors. And so just this past year, have bought a kind of a insurance plan that has a long term care rider to it. And I just to me, that's kind of like a way to have some peace of mind that my kids then won't be saddled with all of the financial stuff that comes because it's very expensive when it comes to memory care.
And I have to tell you that I have two kids. I have a 17-year-old and a now 14-year-old. And I actually have decided I'm going to directly tell them my expectation. Not that I need to live with them.
But part of growing up is, you know, I'm going to need help later on. I've done it for my parents. They saw me do it for my parents. And I'm just saying, hey, you know, there'll be a day when I won't be able to drive. Right. There will be a time when I won't be able to do as much. And I would really appreciate it if you can come and help me. Right.
You know, and kind of planting seeds at this young age. Yeah, you got to start brainwashing really early. Having these conversations early and often is an important takeaway from all the guests I've spoken to this season.
Normalize talking about how you want to age and what care you want, just like Kim's doing. I learned so much from all of our guests this season who have found ways to be there for their loved ones despite the challenges. I see her eyes locked on mine. I can see the smile on her face. She's absolutely still here. And that is what makes me keep going.
We're blessed that so many people love her. We're very loved, and I think that is the biggest gift, that I don't feel alone in this anymore. This is what matters. In this moment, you remember me, I'm talking to you, you're telling me you love me, and you're well taken care of. It's all about father and son. It's just that bond, and you don't need words at that moment.
I developed a system of like filling my internal tank because I can't run on empty. So my internal tank is taking care of myself and getting sleep and doing all those things, but it's also joy. Joy was my greatest survival skill.
Being a family caregiver is doing a role that you have no idea how to do with very little support. So you figure it out as you go. You make decisions you never thought you would because someone has to. Being a caregiver can mean being invisible. It's giving so much of yourself emotionally, physically, financially, and mentally, but it's often unacknowledged and underappreciated.
We can do better when it comes to elder care in our country. And change doesn't mean starting from scratch. We don't have to build a whole new system. We have policy solutions that can already make a difference.
Things we've talked about on the show, like additional benefits, resources, and training for caregivers through Medicare so we feel better prepared. More clarity from Medicaid on what supports, like respite care, are available to caregivers and how to access them. And caregiver reimbursements through Medicaid in every state so we don't have to weigh our personal finances against the health of our loved ones.
These are the things that could make the biggest improvements to the lives of caregivers and our loved ones, because it doesn't have to be this hard. There's more Uncared For with Lemonada Premium. Subscribers get exclusive access to bonus content like unaired interview clips from caregivers across the country. Subscribe now in Apple Podcasts. Uncared For is a production of Lemonada Media. I'm your host, Sujan Paak.
Muna Danish is our supervising producer. Lisa Fu and Hannah Boomerschein are our producers.
Our mix is by Bobby Woody. Our music is by Andrea, Kristen's daughter and Hansdale Sue. Our associate producer is Isaura Aceves. Jackie Danziger is our VP of narrative content. Executive producers are Jessica Cordova-Kramer and Stephanie Whittleswax. This season of Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high-performing healthcare system.
Help others find our show by leaving us a rating and writing a review. You can follow me on Instagram at Sujin Park and Lemonada at Lemonada Media across all social platforms. Follow Uncared for wherever you get your podcasts and listen ad-free on Amazon Music with your Prime membership. This show is presented by the Commonwealth Fund, a nonprofit foundation whose mission is to promote a high-performing, equitable healthcare system.
The Commonwealth Fund supports research to improve health care policy and practice and has a long history of exploring what the U.S. can learn from the best health care around the world to do better here at home, especially for people of color, people with low income, and those who are uninsured. To learn more, visit CommonwealthFund.org. ♪
Hey, I'm Nicole Norfleet. And I'm Aaron Brown. And we work at the Minnesota Star Tribune. And we've got a brand new show called Worth It. Every week, we get together with a group of people who know Minnesota inside and out. We skip the Minnesota nights and get right to the good stuff. We share the stories and the happenings around the state worth your time and your money. Worth It from the Minnesota Star Tribune and Lemonada Media. Every Friday, wherever you get your podcasts.