Subscribe to Lemonada Premium for Bonus Content

For years, Kim Moy cared for her kids and husband, while helping to care for her parents – an experience she describes as being in a “pressure cooker.” Being a caregiver to any loved one can be emotionally draining, but caring for a spouse can be a whole new level of lonely. In our final conversation of the season, Kim talks about the tradeoffs of being a spousal caregiver, grieving the loss of someone who’s still there, and how she’s learned to let go of the way things used to be.

Kim Moy’s Caregiver Wisdom offers resources and workshops for those who take care of loved ones with chronic debilitating illnesses. Learn about the monthly support group, workshops, and one-on-one coaching here.

Dr. Pauline Boss coined the term ambiguous loss, which Kim talks about in the episode. Learn more about ambiguous loss and Dr. Boss at ambiguousloss.com.

This season of Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high-performing health care system.

Help others find our show by leaving us a rating and writing a review.

Follow SuChin Pak on Instagram @SuchinPak and Lemonada at @lemonadamedia across all social platforms.

Want to become a Lemonada superfan? Join us at joinsubtext.com/lemonadasuperfan.

Click this link for a list of current sponsors and discount codes for this and all other Lemonada series: lemonadamedia.com/sponsors.

To follow along with a transcript, go to lemonadamedia.com/show/ shortly after the air date.

See omnystudio.com/listener for privacy information.

Transcript

Transcript

SPEAKERS

Kim, Sender 5, Sender 6, SuChin Pak, Sender 4, Sender 3, Sender 2

Kim  00:02

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.

 

SuChin Pak  05:27

Was there always the assumption that you would take care of your parents?

 

Kim  05:30

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 how this happened, because they spoke completely different dialects of Chinese

 

SuChin Pak  05:50

With the two grandmothers?

 

Kim  05:51

Yes.

 

SuChin Pak  05:52

Oh, wow.

 

Kim  05:54

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.

 

SuChin Pak  06:23

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.

 

Kim  06:56

In fact, what happened was my parents being very thrifty, Chinese Americans were saving food and that 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 the hospital, yeah, 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 him, 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 could see, oh, my God, it is really bad. So then we started with hiring a caregiver who would come in. Yeah, 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 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.

 

SuChin Pak  08:52

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 like I’m gonna have to come to terms with this, did that realization Come slowly? Was there a conversation you remember a moment?

 

Kim  09:23

Well, even though I knew my mom had Alzheimer’s, I still clung to this idea that she and my dad were gonna live with us. I still clung to this idea, yeah, 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. And 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? Are you 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 I thought I would do it.

 

SuChin Pak  11:00

Were you okay with that decision?

 

Kim  11:05

I still, I mean, I’m still cheer up thinking about it, yeah, yeah.

 

SuChin Pak  11:12

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.

 

SuChin Pak  13:01

Welcome back. 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.

 

Kim  13:29

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% and any given day, more or less, depending on how bad the illness is for them. Whereas you and me, we can sleep and, you know, rest, 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, you know? So we see so many different doctors, right?

 

SuChin Pak  14:26

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 were also caring for your husband. So this gotta, 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? What does a day to day look like for you as you’re also taking care of your husband?

 

Kim  15:00

Yeah, and she mentioned, a lot of people talk about the sandwich generation. And when I explained to people my situation, I call it the pressure cooker situation. 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. You know, it’s one thing. It’s like, oh, 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 have 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.

 

SuChin Pak  16:44

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 mast cell, which are both autoimmune diseases, and you never quite know what you’re gonna 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.

 

Kim  17:17

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, okay, well, we can still do this. This is amazing. I even found someone who knows how to Salsa dance, right? We used to go out to eat a lot, you know, before kids, right? We loved going out and trying new restaurants now he can definitely not do salsa dancing, and when we go out to 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.

 

SuChin Pak  18:18

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.

 

Kim  18:29

So I think when we first met, it’s what you you would say he was in the mild side, because he was still able to work, 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, 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 it he just couldn’t hang on. And we had to do a short term disability, you know, leave of absence for health reasons, and he tried to go back work after that, couldn’t do it. So then we’re like, okay, do. He’s gonna have to take long term disability and be at home, and that was so painful, because he loved that job, and he had to walk away from that.

 

SuChin Pak  20:11

And that was, I’m guessing, by your kid’s age, I mean, over 10 years ago.

 

Kim  20:15

Yeah, yeah.

 

SuChin Pak  20:18

And so I know it’s never like linear line of like it’s getting worse or getting better. It’s always a little bit.

 

Kim  20:26

Yes.

 

SuChin Pak  20:27

Within the range, right? It is so hard to describe what this is like, especially when you see pictures on social media and you’re 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. So I just wanted to say that. Thank you. I see you. I see 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? What can’t he do.

 

Kim  21:21

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, 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.

 

SuChin Pak  22:59

And for you.

 

Kim  23:00

Yes.

 

SuChin Pak  23:02

Yes, yeah, because I think that you know this question of like, what something about being in this caregiving position 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’d 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.

 

Kim  23:35

Oh, yes, when I first heard about this 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. 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’s still alive, but you still have a lot of grief, oftentimes unresolved, because it’s ongoing.

 

SuChin Pak  24:44

Where do you think you feel the loss the most with your your husband? You know, is it as a partner? Is it as a salsa dancing you know, partner? Is it a friend? Is it a uh, as a co parent, in the way that we traditionally think, Where do you think you feel the loss personally the most?

 

Kim  25:06

Yeah, oh, that’s such a great question. It’s definitely as a partner, as a husband, right? So the wife, husband relationship, um, 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 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 so that part is really, really hard. Yeah, I think that’s probably the hardest.

 

SuChin Pak  26:14

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.

 

Kim  26:34

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.

 

SuChin Pak  27:31

I think part of the ambiguous loss is this constant state of limbo.

 

Kim  28:24

Yes.

 

SuChin Pak  28:25

It’s such a stressful and I would say, unnatural place to live. It’s a unnatural 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?

 

Kim  28:50

I actually am. I’m 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 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 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.

 

SuChin Pak  30:45

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.

 

Kim  31:19

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.

 

SuChin Pak  31:44

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?

 

Kim  31:59

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 consensual circles out, right? It should also be other agencies and healthcare, right, a systems, right? I think if you just focus on the idea that it takes a village to help people 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.

 

SuChin Pak  33:09

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.

 

Kim  33:24

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 writer 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 will 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, you know, and kind of planting seeds at this young age.

 

SuChin Pak  34:45

Yeah, you gotta 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.

 

Sender 2  35:14

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.

 

Sender 3  35:25

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.

 

Sender 4  35:34

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.

 

Sender 5  35:42

It’s all about father and son. It’s just that bond, and you don’t need words at that moment.

 

Sender 6  35:50

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.

 

SuChin Pak  36:06

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.

 

CREDITS

Uncared For is a production of Lemonada Media. I’m your host SuChin Pak, Muna Danish is our supervising producer, Lisa Phu and Hannah Boomershine our producers. Our mix is by Ivan Kuraev. Music is by Andrea Kristinsdóttir. Our associate producer is […]. Jackie Danziger is our VP of narrative content. Executive Producers are Jessica Cordova Kramer and Stephanie Whittles Wachs. This season of Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high performing health care system. Help others find our show by leaving us a rating and writing a review. You can follow me on Instagram at @SuChinPak and Lemonada @LemonadaMedia across all social platforms. Follow Uncared For wherever you get your podcasts and listen ad free on Amazon music with your Prime membership.