Erik Weihenmayer:
It's easy to talk about the successes, but what doesn't get talked about enough is the struggle. My name is Eric Weihenmayer. I've gotten the chance to ascend, Mount Everest, to climb the tallest mountain in every continent to kayak the grand canyon. And I happen to be blind. It's been a struggle to live what I call a no barriers life. To define it, to push the parameters of what it means. And part of the equation is diving into the learning process and trying to illuminate the universal elements that exist along the way. In That unexplored terrain between those dark places we find ourselves in and the summit exists. A map that map that way forward is what we call no barriers.
Diedrich Jong:
Whether you are a new listener or one of our regulars, the statistics show that you've cared for someone at some point or will or have been on the receiving end of the caregiver experience. In our previous episode, we spoke with a young millennial who gave up her career ambitions to care for her grandmother. That experience however, led her to start company called Carewell, which is now thriving. Elizabeth Miller is our guest today and she describes herself in the sandwich generation of caregivers. On one hand, taking care of both ailing parents, and on the other hand, her own children, while also working full time. The challenges of this sandwich experience led her to some dark places. So much time spent on other people that the neglect of her own health reached critical levels.
Diedrich Jong:
Since then, she's dedicated her life to improving the health of people in similar situations, through her business and podcast called Happy Healthy Caregivers. In this conversation, Elizabeth shares ideas like 100 days of healthy, the realities of the balancing act and why she felt she regularly left her mom on top of Mount Everest. And much more. This episode is especially personal to Eric. Have a listen and you'll learn why, okay, let's get into it. I'm producer Dietrich Jong, and this is the No Barriers podcast,
Erik Weihenmayer:
Everyone. This is Erik Weihenmayer. Welcome to the No Barriers podcast. We have a great guest today, and Elizabeth, it's awesome that you're joining me. And we have our No Barriers summit coming up. August 25th, 26th, 27th, 28th. 28th will be a part of the summit we call what your Everest. We'll have probably three, 400 people all hiking up the mountain above Estes Park with every challenge under the sun from blind people like me to folks who are deaf and folks in wheelchairs and folks with not only physical challenges, but emotional challenges, because we all struggle with that kind of stuff. Anxiety, fear, doubt. Right? And we have a youth division and we have a caregiver division. We do a lot of programs with caregivers. So that's a perfect segue to Elizabeth. How are you today?
Elizabeth Miller:
Wonderful. And it's wonderful to meet you, Eric, virtually. I share your story about your own summit and how No Barriers got started as a program leader and ambassador for No Barriers. So it's wonderful to just get to meet and chat with you.
Erik Weihenmayer:
Thank you. Yeah, we do have a good origin story with me connecting with Hugh Herr and Mark Wellman, my old friends who we joined and climbed together and long time ago, roped up together and started this idea we hoped would become a movement. So it's expanded for sure, and grown and evolved. I love, I love to see where it's going today and you've been a part of our programs as well. So it's a great connection. And I'm a big fan of your Happy Healthy Caregiver podcast that I know you host. The other connection that we have is that my dad who sadly passed away recently was down in Amelia Island. And I know that's where your parents were as well. So we have that common connection of that beautiful Amelia Island Beach. Huh?
Elizabeth Miller:
I know. And I'm sorry for your loss, Eric, there's really no words that can make the grief go away. It's, it's a journey we've got to go through. And my dad's been up watching over things for eight years tomorrow, in fact. So I still feel the spirit every day and I hope that you have the same with your dad. And we like to go back to Amelia Island, my sisters and I, and remember all the good memories because it is, it is a beautiful place.
Erik Weihenmayer:
Yeah, it is. It has been a tough couple months for sure. But I guess it's, this could be taken so out of context, but it's comforting in a strange way to know that we're all part of the same club and that we're all going to experience this. I mean, I wouldn't ask anybody to be a member, but we all go through it. It's part of the human experience. And so I'm just trying to focus on all the gratitude and celebration of my dad's life, and he was a huge impact on me. And I got a little taste of what it was like being a caregiver for the last three or four months of his life as his health declined. So I think that gives me a little taste of empathy for this community.
Elizabeth Miller:
Yes, we need the compassion, and none of us are going to get out of the caregiving experience, Eric. We're all going to, Rosalyn Carter says you're all either going to be a caregiver, need a caregiver, have been a caregiver. There's no escaping the story. And I hope that when you visit and have your dad's Memorial, that one of the things that I have found to be a positive thing in losing my dad and then my mom and some other loved ones is you get to hear a lot of really cool stories. And I know that you enjoy stories and you're going to get glimpses of your dad that you might have never known about. And they're fabulous. Those little nuggets.
Erik Weihenmayer:
Yeah. Yeah. It'll be a nice celebration. Yeah. I leave tomorrow, so. Well, cool. I want to talk about your parents. So coming from Amelia Island, and humans are multidimensional, but we're going to focus on your life as a caregiver for the most part. And so you had two parents and I read some articles that you wrote and they seemed pretty unhealthy, right? And so there was a pattern of them being pretty unhealthy, maybe overweight and making some health decisions. And so I thought that was really fascinating that you kind of stepped out of your situation to kind of realize, oh gosh, they didn't make the healthiest choices. Right?
Elizabeth Miller:
They did not. They were, I'm 51 years old now, or 51 years young, depending on how you look at it.
Erik Weihenmayer:
Nice.
Elizabeth Miller:
Yes. And my parents, most of my adult life had had chronic co comorbidities. They were morbidly obese. They had diabetes sleep apnea, heart disease. My mom had COPD, autoimmune disease, depression. Like I affectionately called them a cocktail of different things. And my husband at the same time was caring for his mom who had lung cancer. And so we were what you call squeezed in the sandwich generation, caring for our children who were in middle school, and even younger at the time, and then our older adult parents while working full time. So it was a lot, but there was this aha moment actually on the drive to Amelia Island for me, because my parents' health really spiraled out of control in 2014.
Elizabeth Miller:
It was on these one of those solo rides to Amelia Island doing my shift between sharing the care with my siblings, that it really hit me, that I needed to learn how to prioritize my own health and happiness, or I was going to potentially put my kids in the same situation that I was in. And that my siblings were in with our parents where our time with them was short. And I knew that wasn't the path that I wanted to take as a, as a daughter. I didn't even recognize myself as a caregiver at that point. I just thought I'm a, I'm a mom who wants to live my best life for my kids, and something's got to change, or I'm going to, I'm going to put my own health at jeopardy.
Erik Weihenmayer
Were you, as a kid, a caregiver for your parents, because they were unhealthy? And were you kind of a caregiver even before 2014 and was that a blind spot for you? Did you say, "Gosh, my parents seem like they're going down the wrong path." Or are you totally blind to it like as a kid?
Elizabeth Miller:
Yeah.
Erik Weihenmayer:
You just think this is the normal,
Elizabeth Miller:
I mean, I think as a kid, growing up with a big family, there were not a lot of examples in my life of older adults that were still alive. I don't have that many examples. I plan to be one of those examples in my family.
Erik Weihenmayer:
Ah, good.
Elizabeth Miller:
Yeah. So my parents have always been overweight.
Erik Weihenmayer:
Yeah. Cause you're 51 and you sound totally awesomely healthy. Right? But at 50, your parents were, like you said, they lived on the beach and they never even stepped foot in the sand or in the ocean or anything.
Elizabeth Miller:
No, the last 10 years, for sure. They never did. It was just, they could see it from their window and their quality of life had drastically declined. And they were never active parents as far as physically active. And we ate a lot of pasta and things, and being in a big family and my grandparents, like I only had one grandma that I knew growing up. So there was just not a lot of examples. And I always thought that they were unhealthy and wished that they were maybe thinner, but it wasn't really, until I became an adult that I really saw, when I started having my own family, my parents would come to visit and it was like more work on me. You hear these stories of some parents coming and they're doing yard work and cooking meals and making their kids' lives easier when they have kids.
Elizabeth Miller:
It was honestly more work for, for me and my siblings to have our parents come and visit. And they expected us to help. They were very clear on that. We'd had some courageous conversations with them, I call it, about wanting to be different and as they got older and their health issues started to decline. I have been exposed to caregiving though my whole life, because I have an older brother who's eight years older than me who has a developmental and intellectual disability. And I didn't really, again, think of that as caregiving. It was just what I saw. And so he was never really formally diagnosed with anything. We kind of say he's on the spectrum for sure. We kind of describe him as being, having Asperger's because people kind of seem to understand what that is. They have a visual of that.
Erik Weihenmayer:
What were the kind of things that you did for him growing up?
Elizabeth Miller:
Just making, he had no filter growing up, you know?
Erik Weihenmayer:
Right.
Elizabeth Miller:
And so he could say things around my friends. And so it was preparing-
Erik Weihenmayer:
You were like the translator.
Elizabeth Miller:
Yeah. Preparing my friends for my brother, he might say something or he can be inappropriate. A lot of times sticking up for him, learning that advocating role very young. I remember my parents having to go and fight with the school system about getting my brother certain things. So I definitely had a front seat to advocacy with my parents, and that they always taught us like blood is thicker than water, no-one's going to love you. Like your family. We stick together. This is what we do.
Erik Weihenmayer
Yeah. Did you ever have a conversation with your parents as like, Hey, you need to take care of yourself better? And the reason I wonder that is because I just keep thinking in my mind, if your parents are just aging, right. And they just get cancer, they just get sick. It's one thing. But if they're declining from reasons that you said, God, you could have prevented this, what goes through your mind in that way? Is it any different or doesn't it matter?
Elizabeth Miller:
I mean, there were many conversations, and I would say, I'm the tough love daughter. I'm the one that's going to bring up those, those conversations and have them, and particularly getting my parents to move closer to family for support. I wrote them an intervention type of letter, and I had to read it because it was just so emotionally charged and I have that still somewhere. And so it wasn't like for a lack of trying, but I think that at some point it's basically an addiction. In some ways they were, they had mental health issues and a food addiction. And while they did try to do some things, I remember a couple times they tried to go to Duke, had like a weight loss institute. And I think they tried three times to course correct. And had some of the tools, but it was a struggle. It was a struggle. And it's something I have to definitely be mindful of.
Erik Weihenmayer:
And you're coming to visit them from Atlanta as like a six hour drive or something, and you were hungry, you had to get there. And I think you like stopped and you got some Wendy's or you got some takeout or something. And I think you had a little bit of an epiphany where you're like, "Hey, I'm kind of maybe going down the same road."
Elizabeth Miller:
Yeah. It was definitely that. I also had this kind of realization and then I thought, well, how can I put this into practice? What makes me different than my parents who have had maybe the same epiphany where they've made these efforts and failed, and what is this going to look like in a practical way? And I remember seeing a cousin of mine do on Instagram, she did like 100 days of happy, I think was kind of her hashtag. And she was focusing on happy things. I thought, let me try to do 100 days of healthy. And that was my precursor to Happy Healthy Caregiver and the blog. Just even thinking about putting my health first. Like, what does that look like? And so it would be taking my kids to practice and maybe it was making a good food choice, maybe it was moving more, maybe it was taking supplements or doing something that brought me joy. So that was really a beneficial way for me to just hold myself accountable and form a habit. I knew if I could do something for 30, 60, 90 days, it would be more of a habit.
Erik Weihenmayer:
But step back and explain why that you decided to do 100 days of healthy living. Was it kind of fear like, oh my gosh, I'm going down the same path as my parents. And then I could be a burden on my kids, or How did you look at it?
Elizabeth Miller:
Yeah, it was definitely that. And my kids would say that like, please don't do this to us. And my husband and I were, he's caring for someone who smoked cigarettes and different, unhealthy choice. So we have three clear examples of people that we love dearly, who we are providing care for, who have completely uprooted our lives. And we've got to choose a different path. Like This isn't sustainable. This doesn't work. And the normal path for many caregivers is to just care for everybody's everybody else and put themselves last. And you hear these statistics-
Erik Weihenmayer:
And burn out and probably have like a mental breakdown, right?
Elizabeth Miller:
Yes. And many, many caregivers pass away before their care recipients. And that was kind of the case with my parents. Like my dad was definitely the stronger of my parents. And he was paying the bills and holding all the house together and also taking care of my brother who had special needs as well. And he burned out and his spiral was quick. And within a month he was intubated four times, went on hospice, and helped make one of the roughest decisions of his life, where he thought I'm done no more. I'm not trying this anymore. I'm choosing to let go.
Erik Weihenmayer:
That's brave. Oh my gosh. And then when did you realize, because you said at first you didn't see yourself as a caregiver. When did you realize, I am a caregiver? Like when did that phrase even come into your lexicon?
Elizabeth Miller:
I mean, the first phrase that came in, like I am a person that's going to roll up my sleeves and figure out how to dive in and solve a problem. Like I'm not one to sit and wallow and oh, woe is me. Like I'm going to figure something out. And so I really started Googling and looking for advice and I didn't even really know what to search for. And I loved to read. So books was kind of the first place that I went and I didn't Google caregiving or caregiver. I first kind of landed on this taking care of kids and parents at the same time. And I landed on the sandwich generation term first and that really spoke to me. And it wasn't until years-
Erik Weihenmayer:
What is that? I don't know what that is, the sandwich generation.
Elizabeth Miller:
Yeah. You're sandwiched between two slices of bread. Think about your one slices is your kids, and the other slice-
Erik Weihenmayer:
Got it.
Elizabeth Miller:
And so I'm the meat in the sandwich. And I used to say, you take care of the M-E, the me in the sandwich. Like what about me? And in fact, my first website was called Savvy Sandwicher because I thought I was going to figure out how to be this savvy sandwich generation person. And people just thought I made sandwiches.
Erik Weihenmayer:
They thought you were a cook or something?
Elizabeth Miller:
Yeah. Yeah.
Erik Weihenmayer:
Making PB and J's or something.
Elizabeth Miller:
Yeah. If I was a sandwich, a caregiving sandwich. I definitely felt like it was a sloppy Joe. It was a mess. My life was a mess.
Erik Weihenmayer:
Before you came up with ideas and tips and thoughts and so forth, you felt like that meat between those two sandwiches, and you were caregiving for your parents, what were those sacrifices like? What do those feel like for you?
Elizabeth Miller:
My feelings initially were, I felt lost, you know, I felt overwhelmed. I felt isolated. Like none of my friends were really going through the same thing and could relate. I felt like I was-
Erik Weihenmayer:
Yeah. Because you were pretty young too. I mean, you're like you were like at your 40s, right? That's kind of typically you think too young to have to start dealing with this.
Elizabeth Miller:
Now it's even younger, as people wait to have children older, there's so many more young caregivers out there, but yes, I did feel like I was young in my circle. So much vocabulary, new vocabulary, new terms. It was a learning, a huge learning curve. I felt frustrated by the healthcare system was very fragmented, and you are trying to piece together the information. And I wanted somebody to just validate, like this, hello, it's me, I'm wheeling in mom to appointments or taking copious notes in the hospital. And people were very quick to give me advice and my husband advice about how we should better manage their diabetes and you know, wound care and whatever other handouts they could give us, basically adding to my task list. And I just thought-
Erik Weihenmayer:
But you're responsible for it all too, right?
Elizabeth Miller:
Yes. And doing things I never pictured and uncomfortable things with incontinence and personal care with both of my parents, that places that you never expect that you need to go and the conversation after.
Erik Weihenmayer:
Doctor Elizabeth.
Elizabeth Miller:
Yeah.
Erik Weihenmayer:
Yeah. You've got to become a physician in a way.
Elizabeth Miller:
Yeah. Yes. We wear lots of different hats as caregivers and transportation and then just taking on. And then when my dad had passed away, he was the financial person and he was holding all that together. So not only is it the physical responsibilities and this emotional turmoil mess that you're dealing with on this roller coaster, but it's also just the large quantity of tasks. You have another home to take care of. In our case, we had two homes. My parents were snowbirds. They had a place in Michigan.
Erik Weihenmayer:
All right. Giving you a gut check because I've literally getting anxiety as you're telling me-
Elizabeth Miller:
I'm sorry.
Erik Weihenmayer:
The story. No, no, no. This is the situation, right? Wow.
Elizabeth Miller:
Yeah.
Erik Weihenmayer:
I'm thinking, oh my God, this is so overwhelming.
Elizabeth Miller:
I feel like I had it better than most too. I mean, there's many people you talk to and I meet on the No Barriers caregivers retreats, and everywhere else that what I didn't have was I didn't have the financial worry. My parents were in a good financial place where we had options. We had options for care for my parents and we did not have to sacrifice that. And there are many, millions, probably of caregivers who do not have those financial options and they have to lead their career. And that was another sacrifice I had to make as far as my work career. Like I had to kind of put myself into a ... I was in the peak of it.
Elizabeth Miller:
I remember we were launching our e-commerce platform where I worked and you know, I had all this responsibility and I wanted to be part of this big launch and they kind of handpicked the people that they thought would be the best to work on it. And I didn't want to give that up. And I was grateful for my boss was super understanding. And he was also a caregiver, which helped. And he said, take the time that you need do what you need to do, but they say that, and you still feel this angst.
Erik Weihenmayer:
You still have pressures because you still own that responsibility of that job. Right?
Elizabeth Miller:
Yeah.
Erik Weihenmayer:
And then you're taking your mom to the hospital or to the doctor's appointment. And that's like probably a ... Well, we're going to get to that, but that's like a half day, you know?
Elizabeth Miller:
Yeah.
Erik Weihenmayer:
That's like a half day where you're not focusing on your project anymore.
Elizabeth Miller:
Yeah. It was. I got savvier at that, speaking of that savvy sandwicher. But I got savvy about figuring out when to make appointments early in the morning or right after lunch to minimize the slide of the doctor or the specialist Workday. I learned about concierge doctors who could answer a text quickly and would spend more appointment time with us. But again, like all this vocabulary and piecing it all together. And my mom used to get mad at me. She would say, "Elizabeth, why do we have to leave so early?" Or can we go to such and such place for lunch. And I'd say, "Mom, I have to get back to work. Like we've already been gone four hours. We can certainly get the meal that you've missed, but I need to get back to work."
Elizabeth Miller:
Similar kind of guilt, lots of guilt. I mean, I would go over at night and she would say, "Can we watch a movie together?" She lived nearby in an assisted living community and I'd say, "I can't do a movie. Let's watch an episode of Frankie and Grace. I got to get home to the kids." I got to get up at 5:00 AM and start this hamster wheel all over again.
Erik Weihenmayer:
Yeah. So your dad, so back up, your dad passed away and then your mom needed to be in an assistive living care center. And so did you move her to Atlanta because that was probably unmanageable to have her in Amelia still, right?
Elizabeth Miller:
Yeah. There was no family in Amelia and that's six hours from us. There's two brothers and myself lived in Atlanta and then we ended up bringing my other brother, the one this with special needs to Atlanta. And yeah, mom, my parents had lived in Atlanta before, so it wasn't completely unknown to them. And at the time, we thought we were bringing both of them. I had finally convinced my dad right before he passed, he was weary and he said, "I can't do this anymore." And I said, "Okay, dad, I'm on it. We're going to get a amazing place for you and mom nearby." But then we had to quickly pivot right after he passed and just find a place for my mom.
Elizabeth Miller:
She was, yeah, she needed a high level of care. And as a working mom, I wasn't something I could take on. She was severely diabetic and mobility challenges. And she would spend some holidays and things at my house. We would make it happen. And sometimes I'd have to rent ramps and things to make it happen. And then eventually my sister, my older sister got divorced and she ended up taking mom's care full time. And that's how they ended up in Michigan for her last years of life. And she had a lot of bonus years.
Erik Weihenmayer:
She was in that assisted living center, and you were there, so you were in Atlanta, so you could come and visit and kind of oversee her care and be there for her. But it still, that must have been a big adjustment as well. Like I know my dad's last three months of life. I was there at the rehab center a lot. And my brother Eddie pretty much took a hiatus from his running his two world gyms. And he was there all day and my dad would wake up at 3:45 in the morning wanting to like do his first workout. He just didn't sleep that much.
Erik Weihenmayer
Eddie's like this big bodybuilder, tough guy. And he was absolutely wiped out. He was exhausted, just always having to be there. Right? And my dad, he could barely feed himself and the nurses would come in and not like they were anything bad about them, but they just have a lot of people they're dealing with, so they dropped the tray off. And if Eddie wasn't there to feed him and make sure the food got in his mouth, the tray would've just sat there. So I imagine from relating that, like there might have been some situations in the facility where you really felt responsible and it must have been hard to, I don't know, to kind of leave and deal with your life.
Elizabeth Miller:<
Yeah. I think that's the thing that until people are in that situation where, first of all, I relate to what you say about Eddie, because, for a short term sprint, you can one run yourself ragged like that.
Erik Weihenmayer:
Right. And that's what he did.
Elizabeth Miller:
Yes. And if you're in a long term caregiving situation, like there is a point where you're like, "This is not sustainable." But one of the things that people think, I think, that are not in a caregiving role yet, is that when you put your ... Not put them in, but when they choose to be in an assisted living and not live with a family member, there's still a huge role for a family caregiver. There's this advocacy role. I mean, there's so many times my mom would call me at the crack of dawn. They're not doing this right. I haven't gotten my this. They haven't showered me. My breakfast isn't here. It came cold. Or my medication. And I need to order this and that, and my WiFi's not working. And they're just different issues. There's still issues. And yes, I had a place I could come home. I could get a good night's sleep potentially, but there is still a caregiving role. It's just it changes. It's a different role
Erik Weihenmayer:
On a side note, is it really hard not to get like angry with the care that your parents are getting? Because I had to keep checking myself, because these are perfectly good medical people and caring human beings, but they just had such a ... Their time was limited. They had to take care of 30 people. They didn't have time to feed my dad. You know what I mean?
Elizabeth Miller:
No.
Erik Weihenmayer:
And give the care that he really needed and deserved. But so is that a typical thing where you feel like kind of angry all the time?
Elizabeth Miller:
You do feel ... Well, and I'm sure it's worse now. I know that people are under resourced even more so. And it was an issue back when my mom was in assisted living communities then, and like you said, they plan everything on paper. Right? And they've got to have structure to the day. And my mom, she wanted on demand care. Like she didn't want structure. She didn't want to shower at 8:00 AM. She liked to sleep in and ease into the day and there's no personalization or room for personalization.
Elizabeth Miller:
That can be very frustrating. And there's so much turnover and understaffed that you do get angry and you're getting angrier because you're paying like a equivalent for many of these communities, like you're buying a nice used car every month and that's rough to pay that much money and still not get the care. I mean, at some point, for me, even as a working family caregiver, I would have so many breakdowns with my girlfriends where I was like, "And this is happening and this is happening." They're like, "You need more help." And I said, "We're already paid eight, nine grand for this place." But I did end-
Erik Weihenmayer:
But even medications, right? Like what about medications? Like my dad would constantly, they'd be getting his medications wrong and he was in pain. And so if he didn't get his medications, he'd be in agony and they never had the charts quite right. You know what I mean? Because there were so many doctors involved and nobody was talking to, nobody was coordinating. Like there was no quarterback.
Elizabeth Miller:
You're the quarterback as the caregiver, you're the nucleus. And you're like, yes, it should be so much easier. And I would be there. I would learn at the hospitals or the rehabs, like when the rotations would come by and I thought, "I need to be there when so and so doctor's there so I can tell them this, or I can get the notes, or I can communicate what's going on." And if you miss them, you miss them. And I used to walk by the hallways and think, what do people do that don't have an Elizabeth or an Eric?
Erik Weihenmayer:
That's what I kept thinking. I go, what happens to somebody when their kids aren't there? What do they do? They just waste away.
Elizabeth Miller:
They die. They die sooner, I think. Yes. Oh yeah. Yeah. I know. I wish there was that better news.
Erik Weihenmayer:
Yeah. This is a side note now. I mean, but because we brought it up, how does the healthcare system improve to treat people with more dignity and humanity as they get older?
Elizabeth Miller:
I mean, I think one is it's getting slightly better. Right? I think the pandemic has shed some silver linings on things where there, at least now some states are, are asking even for the caregiver, the primary caregiver to be noted on the form. Like recognize this role and the criticality of this role and the value of it, I think is one step so that we are, we are informed and we're all working together, but there is still this, we do have a lot of strides to make. It's a very fragmented system. What I wish would happen is I wish that like if somebody were in a hospital setting or a doctor's office, that when they're giving the information about the diabetic care and the wound care that they're also saying, "Hey, this is probably a lot on you as the family caregiver. And here are some resources that could help you." And there's a Happy Healthy Caregiver podcast. There's a No Barriers caregivers program.
Erik Weihenmayer:
And actually hosted by you.
Elizabeth Miller:
Yeah. And there's all kinds of resources for them. And, and that's the other struggle is that it's hard because a lot of these things vary depending upon your geographical location, things are called different things. We have areas on-
Erik Weihenmayer:
We have no resources. I don't think anyone ever sat us down and talked to us about resources.
Elizabeth Miller:
No, I'm sad. That happened. That's still happening then, because it didn't happen. And you're learning about things like palliative care and hospice, like you're in a very reactive way. And I even am resentful in some ways that my mom had COPD, and nobody ever really sat us down and said, "You have COPD. This is an incurable disease. And this is the trajectory of what you can expect." And they know it. They're just not sharing it. And you can make plans accordingly and not be in denial that way.
Erik Weihenmayer:
So you learned to navigate the system pretty well, of course. But then even for you though, like you would leave your mom. And I think you wrote somewhere that you felt really guilty. Right? Because you want to be there 24/7, but you can't, you're getting pulled in a million directions. Right? So how do you emotionally cope with that feeling like, oh my God, I'm not doing as good a job as I should be. I'm abandoning this person who took care of my every need when I was growing up. And you know what I mean? Like, there's that whole emotional piece as a daughter.
Elizabeth Miller:
Yeah. You feel like you're in a no win situation. I feel like that it's, I don't know if the irony or whatever, Eric, but one of the things that I say is I used to feel like I was leaving my mom on the top of Mount Everest, which you've been to.
Erik Weihenmayer:
OH, there you go.
Elizabeth Miller:
But I said I feel like I'm leaving her at the top of Mount Everest when I leave her in the assisted living community. I'm like, "Mom, here's your water, here's your this, here's your phone, here's your thing." Everything's kind of right within arms reach around her lift chair. And when I leave, one little bump and she could knock all that off kilter and there could be a phone call coming, but I used to get in my car afterwards and I would just have a really good cry.
Elizabeth Miller:
I wrote in my journal, that's where writing became very therapeutic and a way to process that for me. And one of the early blog posts I wrote was it feels like you're feeding a nest of hungry birds, when you're that person squeezed in the sandwich generation and a working caregiver on top of that. You're the mother robin rushing out to get the worms for everybody. And you come back and this nest of birds is all like screaming at you for a piece of the worm. And you're like, I'm going through this whole decision tree in my head. Who is the most needier? Who did I give it to last? And you know, you miss things. I remember feeling guilty too about my kids were in school and I would be with other moms and they would say, "Oh, does Jacob or Natalie have this teacher or that teacher or what?"
Elizabeth Miller:
I couldn't even tell you what classes they were taking. I had to let go and kind of sit my kids down and say, "Look, you all are going to have to own this stuff. Like something's got to give. And we want to be there for the big things, but the day to day stuff, like this is your job. You're going to have to own it." But I would be embarrassed in front of my peers, I missed birthdays. I missed some holidays caregiving. I missed the first day of school for my daughter high school. Like, yeah, caregiving can do that.
Erik Weihenmayer:
So you're getting pulled in all those directions. And you mentioned kind of some of those struggles, but you also turned out to be a very good advocate for your mom. And so what does it take to be a good advocate and not just get bitter? Like can everyone be a good advocate? Are there some tips, some ideas?
Elizabeth Miller:
I think there is something in your DNA a little bit. Like I tend to be more of a Tigger than an Eeyore in my DNA. Like caregiving did really challenge me. At some points, I was like, who is this woman in the mirror, like her light's starting to diminish. But for my mom, she was a writer as well. We found a common thing there, she was, I was always kind of worried about what she would think about me writing about this experience. And she was all for it, frankly, and was very proud of the conversations where I felt like she could be resentful and bitter toward me about it. Humor. We had a great, humor was key for us and my siblings we would have texts and Marco Polo video chats about, oh, you can't make this stuff up, the things that would happen and humor with my mom as well. I do replay some things and I think, oh, now that I'm smarter and have learned more, I could go back and do things differently. But you make the best decisions with the information you have at the time.
Erik Weihenmayer:
Yeah. So I wanted to go through some of the things that you talk about on your podcast, some of the things that you have discovered. I mean, things, well, let's just start with like, I think you mentioned meditation. God, it's something I've been wanting to do. And I just kind of flirt with it and I never really do it. But how did meditation help you as a caregiver?
Elizabeth Miller:
I mean, it allowed ... Things rolled off of me easier when meditation and mindfulness became more of a habit for me. And it's-
Erik Weihenmayer:
What does your practice consist of? Like you sit down and what do you do? Do you-
Elizabeth Miller:
10 minutes, 10 minutes of a daily calm. And particularly when I was a working caregiver and I was working out in the morning was when I carved out the time for myself. And I would sit in the sauna for 10 minutes and I would listen to the calm daily meditation. And I just found that it allowed things to roll off me a little easier, but I had to really practice it. And I think that I like to do things well. I think all of us, we want to, we think that there's a right and a wrong way to do meditation, but it is a practice. It's not a thing that you check off and it doesn't mean I'm not going to have thoughts coming in. It's just I'm going to recognize them and breathe and try to get back into being present. Because I think you're just in this kind of whirlwind spiral of things-
Erik Weihenmayer:
Checking the boxes on the list constantly. Right?
Elizabeth Miller:
Yes. And I mean, I have to be very careful of that. I'm a productivity ninja in many ways and I can stay busy. And I think a lot of caregivers, it's a coping strategy to just keep busy so that you don't have to feel the emotional burden and heaviness of caregiving sometimes because there's a fear, I think, that if you start to kind of unravel the emotional side of caregiving, that you might just end up in the fetal position in a corner and how is everything else going to move forward? So it's a fear for people.
Erik Weihenmayer:
Yeah. Because you got to be strong. So you're like, "Oh my God. If I break down and feel vulnerable. Get into a fetal position, start crying. You can't stop."
Elizabeth Miller:
Yeah. Yeah.
Erik Weihenmayer:
Who's going to be the boss?
Elizabeth Miller:
Yeah. But it's just a good time to kind of check in and be present. And now it's kind of evolved, my meditation and mindfulness now that I'm working remotely out of my house, doing my own entrepreneurial business. Like for me, it's a midday walk, a 10, 20 minute walk outside. Nature is very healing for me and getting that DNA, vitamin D rather in the sunshine and soaking that up. Like I have to get outside.
Erik Weihenmayer:
How did you find time, when you were a caregiver and you got your kids and you got ... So how do you find time to work out? You just make time?
Elizabeth Miller:
I mean, it was a conversation with my husband and I said, "I got to do this for my mental sanity." Like I'm losing it. And first it was just a couple days a week I would carve out and say, "Can you cover things and get them where they need to be in the morning?" And a conversation with the kids as they got older, like, "Hey, we're not going to be here if you miss the bus." Like, you got to get on that bus, you own this, this is your job to get yourself to school, as they got older and that was easier. But my husband owned more of the morning stuff. I owned more the afternoon stuff. Like we had to kind of ... We created a system and that's really what the successful caregiving strategy is, it's a lot of little systems that make it sustainable
Erik Weihenmayer:
Is a lot of it, like put your oxygen mask on before you put your kids on, like on the plane? Like as a caregiver, you probably feel guilty taking care of yourself. You're like, "Oh my God, that's a selfish act." But you're saying, if you don't take care of you, there's going to be nobody to serve that role.
Elizabeth Miller:
Well, and I had the examples, right? Of what happened when people didn't do that. So I already saw what that looked like. So for me, I thought, that doesn't work. Let me try this. And then it's a check in and see, well, how does it really make me feel? At first, it is uncomfortable. At first, it feels really awkward to carve that time out for yourself. But then you start seeing the ripple effect, the positive benefits of doing that and how you're showing up as a better version of yourself, how I'm more patient, things are rolling off of me a little bit easier. I'm not as tired. I have more energy.For me, I had to really figure out and try on a lot of different things to figure out what self-care looked like for me. It's not the same for everybody, I had to, does this make me feel more peace of mind, more energized, more joy? And if so, keep doing it and if not, move on. But it really was like, how is this going to ... Is this helping?
Erik Weihenmayer:
Yeah. That seems like such a basic message. But is that something you have to teach people in your community constantly because you're like, I don't know. I feel like it might be a tendency for people to say, "I'm supposed to be a martyr here." That makes it, in a way, makes me feel good about how I'm serving my parents or whoever it may be. Right? But it's like a mindset shift that you have to have.
Elizabeth Miller:
It's a mindset shift. It's coming to an acceptance. First, you have to kind of, instead of resenting the role of caregiving, accept the role of caregiving and then like most projects and things that happen in your life. It's like, okay, we need a team of people to do this. This can't all be on me. What if something happens to me?
Elizabeth Miller:
The COVID pandemic, I think was very clear that if one of us got six, someone else had to pick up the pieces and we've got to have backup plans and several of them. And then I think too, like the people who struggle with prioritizing their own self-care, and self-care's not just about eating right and working out, but all of that mental, practical and so forth, but it's what would happen first of all, if something happened to you, to the person that you greatly care for? That sometimes will get people to move in that direction. And, and what if that person is tired of you? We think about we're doing all of this for our care recipient, but they need, variety's the spice of life. They need other people too, for companionship and activities and yeah.
Erik Weihenmayer:
Elizabeth, what about sleep? I know that was also on your list. I mean, it seems so basic, of course you've got to get sleep, but is that like an important conversation?
Elizabeth Miller:
Oh yeah. It was one of the things, first I was really doubled down in the beginning on my physical self care because of my parents' physical health situation. And it wasn't until the other categories of self care as I've matured in caregiving and reflect back on it, how important they were. But sleep was one of those big ones where, particularly with people's concerns that have family members with cognitive issues, like brain health is so important and sleep is so critical to give us that time, to process the day and have that rest, that it has been something that I've had to work on and it gets harder, for me, as I age, and for sure, one of the things I love to read some paper books at night before I go to bed and unplugging from the screens has really, really been beneficial.
Elizabeth Miller:
But I know that a lot of caregivers have to set boundaries too, if they have care recipients that live in. My sister used to when she had the reigns, and was caring for mom full time, she used to, she moved the coffee pot into her bathroom because she would, if my mom smelled the coffee or saw my sister come by, she thought she was on duty for caregiving. And my sister just needed that time in the morning to read her scripture, write in her Bible, have her cup of coffee and kind of just take a breath and get into the day. And that was what worked for her was moving the coffee pot into the bathroom.
Erik Weihenmayer:
Yeah. I'm getting flashbacks. I don't know how you've cracked that nut, because I, with my dad all night would be like awake, like moaning he'd have to reposition his body because he couldn't move. So I'd have to turn him over left, turn him right. So he'd be out of pain. I mean, I couldn't get ... You couldn't get more than an hour of sleep. Nurses were coming in for his medications, and you have to be awake at that point.
Elizabeth Miller:
The blood pressure machines going off.
Erik Weihenmayer:
Me and my brother were both just trashed, you know? I mean, there were nights where we'd literally just pray with him. You know what I mean?
Elizabeth Miller:
Oh, in a hospital setting is rough.
Erik Weihenmayer:
Yeah. I don't know.
Elizabeth Miller:
Yeah. We would take shifts between my family members in a hospital setting and then I have, my brother with developmental disabilities lived with my sister. And when my mom would get to that advanced, the last couple years when she was bedridden, a lot of the fear would be about what if she got out of bed and things that happened. And luckily my brother has been nocturnal our whole life. So he had the night watch and he would sit up with mom. But I think even just a young college student, if you could hire somebody to come in, who's trying to get credits or something just to sit and be with your loved one so that you can get some critical sleep. It's essential.
Erik Weihenmayer:
That's a really good idea if you can do it. Yeah. Now what about, I want to kind of move into the broader policy around caregiving, because, so you have like leave for people having babies and things like that and time away, but like what happens when you know, someone in your family needs long term care? Like how do employees handle that? Like, are you able to take a leave or what does that ... You must deal with that question a lot.
Elizabeth Miller:
I mean, it depends on the size of the company and the different states, but some do have, are required to have a family medical leave back, but that does-
Erik Weihenmayer:
Is it state to state?
Elizabeth Miller:
It's unpaid.
Erik Weihenmayer:
Yeah.
Elizabeth Miller:
Yeah. It's an unpaid leave though. And for me, I remember having a conversation with my boss, like, "Hey, I need to give my sister some respite every quarter, I'm going to need four days to go up to Michigan and relieve her." And having a conversation like this is personal time. This is sick. I'm taking care of a sick person. This is no different than if my kid was sick, but I had to have that conversation. This is not a vacation. This is work, a different kind of work. And a lot of it is building trust. And I do think employers are getting better. One of the things that I do is I speak a lot with employee resource groups and affinity groups. There's been a boom in having those at different employers for caregivers, and giving them the strategies and supporting them and having that culture of support for caregivers, diversity and inclusion and accessibility.
Elizabeth Miller:
It goes in with all of that and that caregiving, they're in your workforce, you have them. And I think while the government's not going to solve this problem potentially in a timely manner, our hospital systems, our healthcare system's fragmented, our employers though, they need quality employees and we've had the great resignation and they're, we can do better about building a culture for caregivers, so that there's compassion and understanding and flexibility and what that could potentially look like for an employer is different, I think, on the size of-
Erik Weihenmayer:
But you're fortunate if you have that flexibility, right? I mean, I guess the negative way of putting it, you are kind of at the mercy of your employer.
Elizabeth Miller:
Yeah. I mean, if you have, you've got to physically be somewhere, you don't have as many options, I think that's where we would ask like an employer where they can to give their employees grace, around how the work gets done, or maybe when the work gets done. If there's flexibility on that, have a little bit of grace when they, maybe they have to reschedule a meeting at the last minute, or take their video off zoom. Because there's just a lot of judgment, I think. And we're all kind of doing the best that we can and managing a lot of competing priorities.
Erik Weihenmayer:
I mean, it's tough for the employer too, though. Because like you're putting together some big sales pitch. And then the person you're caregiving for falls and now the person's gone and has to, has to deal with that situation, right?
Elizabeth Miller:
Yeah. Yeah.
Erik Weihenmayer:
It can be challenging on both ends.
Elizabeth Miller:
You've got to be proactive as a caregiver and you have to kind of assume that the next crisis is going to happen. For me, I used to take my laptop home. I'd take all my cords. I've had all my stuff on the cloud. My folks that I worked with knew had to access things. It was like assuming kind of the worst case scenario, and then everything else would be a pleasant surprise. Over promise, or don't over promise and-
Erik Weihenmayer:
And over deliver, something like that. Yeah.
Elizabeth Miller:
Yes. Yeah.
Erik Weihenmayer:
Okay. So what's your best tool? Like if you were giving advice to another caregiver, what's the best tool? What's just the magic tool that you could give somebody that would be a game changer? No pressure, Elizabeth.
Elizabeth Miller:
No. I mean, support, I think is one thing. I think sometimes what I see caregivers do is that they wait too long. They wait till the crisis happens to get support. Like you know that you are potentially going to be that person, the person in the role, that is. And so click into the support before you need it and know that it's there and you can start kind of collecting the resources. I mean, that's definitely a big one because that makes it easier. That gives you that emotional outlet. That's going to give you those practical, those physical tools, because nobody gives better advice than another family caregiver. Like they are the real experts in this, in the caregiving.
Erik Weihenmayer:
Is that partly why you started happyhealthycaregiver.com? Because it's a place where people can go and share ideas and feel connected. It's very similar to No Barriers, I think.
Elizabeth Miller:
Yeah. I mean, I created what I wish existed for me, frankly. I mean, that's essentially what it is in a nutshell. Like, I just feel like it should not be this hard. We have 53 million family caregivers in the US. Why is it so hard to get support and resources? And so, yeah, I'm going to help fast track you to that, you know? And I can be a listening ear, connect you to some fellow caregivers that'll be your rope team. You're going to feel affirmed, you're going to feel recognized. And you're going to get an idea, a smorgasbord board of different ways of self-care that might work for you. I'm going to share, what's what I've tried and what's working for me. I'm going to share tips and strategies from other people that's working for them, but ultimately it's a discovery process on what's going to make this sustainable for you.
Erik Weihenmayer:
Don't you feel like our, and I don't want to say don't you feel like, I'm loading the question, but don't you feel like we're really kind of failing our older population in America, or maybe all over? Maybe just we'll stick to America, because like you have these things that are like these huge pressing crises, like climate change, and we're starting to get to the point where like, oh my God, this is a serious thing that we have to address right now. Like caregiving for our older folks, it seems like it's swept under the carpet still. Like are there big conferences going on? Like saying, "Oh my God, this is going to be a crisis if we don't figure this out."
Elizabeth Miller:
It's already a crisis.
Erik Weihenmayer:
It's already a crisis.
Elizabeth Miller:
It's a crisis. It's already a crisis. And you know, I think where we all are, I just got, I was at a certified senior advisor conference just yesterday and the day before, there's a certified caregiving consultant. There's a care colloquium coming up. There definitely are people who get it. And what it's really going to take is I'm grateful to see technology companies, corporations helping their employers. It's not going to be a one size fits all solution. Like we've got to attack this from all angles. And I appreciate it. Even what No Barriers is doing, like nobody is offering respite for caregivers in the same way that No Barriers does, which is why I'm proud to be an ambassador of that. Like, we've got to come at it from care can't wait. We're all going to be in that situation. We are, whether you're caring for an older adult, someone with spinal cord injury, another developmental disability, like we got to do better. And when we know better, we do better.
Erik Weihenmayer:
Cool Elizabeth, well, thanks for doing all that you're doing to address this and make the world a better place for caregivers and those recipients of care. So it's wonderful to talk to you today and thanks for being part of the No Barriers community as well. And I encourage folks to go listen to your podcast, Happy Healthy Caregiver podcast. And because there's a lot of great ideas that you share and great and great guests and so forth. So thanks so much for being part of No Barriers.
Elizabeth Miller:
Thanks for having me. Appreciate y'all
Erik Weihenmayer:
Cool. All right, everyone. Thanks so much and make sure you get to our summit. It's up in Estes Park, August 25th, 26th, 27th, 28th. It's going to be an amazing celebration of what this No Barriers life really looks like with incredible speakers and clinics and adaptive workshops like adaptive climbing and yoga and meditation and kickboxing. The guy that's teaching our kickboxing class has a prosthetic leg. So if you want to come to the summit and get kicked in the belly by prosthetic foot, I know that's part of everyone's dream, right? So be a part of our summit. Thank you everyone. No barriers.
Diedrich Jong:
The production team behind this podcast includes producer Diedrich Jong, that's me. Sound design, editing, and mixing by Tyler Cotman, marketing and graphic support from Stone Ward, and web support by Jan Lowe. Special thanks to the Dan Ryan Band for our intro song, Guidance. And thanks to all of you for listening. We know that you've got a lot of choices about how you can spend your time and we appreciate you spending it with us. If you enjoy this podcast, we encourage you to subscribe to it, share
