Episode 174 – Liz O’Donnell on her book “Working Daughter: How to Care for Your Aging Parents While Making a Living”

THE AGEWYZ PODCAST IS CELEBRATING ITS FOUR YEAR ANNIVERSARY!

THANK YOU FOR LISTENING OVER THE YEARS!

There are lots of books on the market about balancing career and children, but where do you turn for advice on balancing career and aging parents?  With 10,000 people turning 65 every day and employers slow to acknowledge the needs of their caregiving employees, Liz O’Donnell’s new book, “Working Daughter: How to Care for Your Aging Parents While Making a Living” could not be more timely.  Liz was riding high in her career as a marketing executive and raising two children when both of her parents were diagnosed with terminal illnesses on the same day.  Her book, “Working Daughter: How to Care for Your Aging Parents While Making a Living” is filled with vivid anecdotes from Liz’s white-knuckle experience as the primary caregiver for both of her parents.  A roadmap to caring for aging parents without losing your job, your marriage or your sanity, “Working Daughter” is a book for caregivers everywhere but especially working women.  Liz O’Donnell is the founder of WorkingDaughter.com, a community for women balancing eldercare and career.  She’s also the author of “Mogul, Mom & Maid: The Balancing Act of the Modern Woman.”

Buy “Working Daughter: How to Care for Your Aging Parents While Making a Living”
Visit Liz’s Working Daughter website
Join the Working Daughter closed Facebook Group

Subscribe to The Agewyz Podcast: iTunes
Got a story to share? Email us any time at jana@agewyz.com

Music: “Turning on the Lights” by Blue Dot Sessions | CC BY NC | Free Music Archive

 

INTERVIEW TRANSCRIPT:

JANA PANARITES (HOST) – There’s no shortage of books on the market about managing career and children. But how many books are you aware of that provide advice on balancing career and parents? Aging parents, that is, and their adult children who are trying to earn a living while also managing the needs of mom and dad. With 10,000 people turning 65 every day, a massive caregiver shortage on the horizon and employers slow to acknowledge the needs of their caregiving employees, the forthcoming book, “Working Daughter: How to Care for Your Aging Parents While Making a Living” could not be more timely. “Working Daughter” provides a blueprint for women and a call to action for business leaders and policymakers. Here to explain it all is the book’s author, Liz O’Donnell. Liz is a marketing executive, an award-winning blogger and the founder of Workingdaughter.com, a community for women balancing eldercare and career. Besides her forthcoming book, Liz has written for digital publications The Atlantic, Huffpost and Next Avenue to name just a few. And she’s the author of “Mogul, Mom & Maid: The Balancing Act of the Modern Woman.” Liz O’Donnell, welcome to The Agewyz Podcast.

LIZ – Thank you so much for having me on the show.

JANA – Great to have you. So we last spoke three years ago: full disclosure to listeners, I have interviewed Liz before but it was three years ago and a lot has changed in her life since then. But at that time, this new book was in process and you were interviewing a lot of people. Some of the issues that we talked about in that interview are reflected in your new book, with examples from actual caregivers, including your own experience of caring for your parents who I understand are no longer living. To frame this for listeners, how would you describe your relationship with your parents? That’s a pretty broad question but…

LIZ – Broad and loaded. I mean, I think every child parent relationship, you could say, was loaded. I would say my relationship with my parents was very good. I was frustrated, however, being their caregiver. And I talk about that a lot in the book, that I had to overcome that. I’m the youngest of three daughters. And I just didn’t think I was the one best suited to be the caregiver.

JANA – Why?

LIZ – My personality. I’m not a warm and fuzzy person. Both my sisters are actually much more nurturing, I would say, than I am. And I had a very, very packed life. I loved my career at the time, which was demanding, I had two kids, I was involved in lots of activities in the town, and I had a book out. So I felt like my life wasn’t set up to care for my parents. And I didn’t have the personality to be the nurturing caregiver to my parents. So while the relationship with my parents I’d say was fine, I struggled with moving into the role of caregiving, I was frustrated with them. I felt like some of their issues, where they required the health of an adult child, were self-inflicted. And you know, and I think and this reflected from other caregivers all the time. You know there’s a problem, you want to get ahead of it, but your parents say, No, no, no, everything’s fine. And then you get called for the crisis.

JANA – Uh huh. One of the great points of many that you make in this book is that most people think about the fact that their parents will die someday, and they prepare themselves as best as possible for that inevitability. But what they don’t consider, as you write, and prepare themselves for is that their parents might not die, at least not quickly or well. So expand on this, and maybe on ways that you weren’t prepared for the decline of your aging parents, outside of sort of what you said about not being the natural caregiver.

LIZ – You know, I think it’s natural for all of us to say, Oh, no, Mom and Dad are going to die someday and I’m going to be so sad. And you try to put yourself – as if you can prepare for death, which we know you can’t, but you want to feel like you have some control. So you think about it. But you never think about, my mother, for example, which I write about in the book, grew really frail and wanted to move. She knew that the house was too much for her, she felt isolated where she lived, but she’s in a marriage. And my father was “go down with the ship,” you know, all independence and stubborn. So very, very difficult as an adult child, one, to see your mother growing weaker and old and doing less – I talked about this with people all the time. Every time you recognize that things have changed, that’s a loss. And there’s grief with that loss. You’re grieving the loss of the parents you had as a child last year, even yesterday. So it’s really difficult to watch that process and grieve through that process and be helpless, because I wasn’t a part of their marriage. I wanted my mother go to assisted living. I knew my dad didn’t want to go. I was helpless to do anything about that because that was, you know, for their marriage to work out. So it’s that kind of things. Or it’s, Wow, my parents are going to need lots of hands on medical care and household care, and I never made space for this in my life. I never thought about this. So that’s what I was talking about.

JANA – Your parents lived on the Cape, right?

LIZ – Correct.

JANA – We should kind of frame this for listeners. You’re in Boston, the Boston area, your parents were in Cape Cod. Was that like a rural setting, the house? It’s very rustic up there, right?

LIZ – Parts of it. And the town they live[d] in could hardly be called rustic or rural, but the area they live[d] in in town certainly was. Even though they were on Cape Cod, they lived on a lake and our summer cottage that we all grew up in – all my cousins, and I was actually next door where my parents lived – but rarely did anyone go down there in the winter. So in the summer the place was bustling with family. In the winter, most of their neighbors were Snowbirders, so they were heading down to your direction. The few neighbors that were around were about my parents age, you know, 70s and above. So it was troublesome. They couldn’t walk anywhere, you know, everything library, groceries, it was all a drive.

JANA – Yeah, accessibility is a real issue with folks as they get older. One of the other things I love about this book is the way it’s organized. It’s very accessible with these one-word chapter headings that are not only prescriptive, but easy to remember. Talk about the evolution of the book and how you gathered the material.

LIZ – Well, first I had to live it, and that was brutal.

JANA – Uh-huh. That was brutal.

LIZ – This book took me – [laughs] – well, “Mogul, Mom and Maid” I wrote in about four months. I did about two months of research, maybe three months of research. I also had been writing about the issues for years. So that book came out really fast, whereas “Working Daughter” was years, because I had the idea, then I started it and my mother got sick or my father, I don’t remember the order anymore, but I had to live it. And then after I had lived it, and I picked up the chapters to dust it off again, I had to relive it. And so I do a lot of my writing on the Acela, which is the high speed train from Boston to New York, when I’m going there for my marketing job. And I found this time around, you know, I’d be sitting next to some guy in a suit, and he’d be on a business called talking about deliverables, and you know, action items and circling back and all that corporate speak. And I’d be trying to write and all of a sudden I’d be consumed and overwhelmed by tears. And I’m like, Oh, here we go. Liz is crying on the train again, because I had, you know, I’d have these flashbacks. And these moments I had to live it.

LIZ – But what I really wanted to create was a prescriptive book. So I’m thrilled that you found it to be that way. I had a couple of missions. One was to make sure that no one feels alone, because I think too many people do feel like they’re alone in this situation. But two, I wanted people to feel like there were things that they could do, take into their own hands to make their situation better.

JANA – And had you kept a journal that you referred back to? Because there’s some really vivid conversations that are recreated. Not to say everything’s verbatim, but..

LIZ – Yeah, I’ll definitely say not everything’s verbatim, in case my sisters are listening, so they have an out. But actually, I did, I kept a journal, which was really helpful. And in some cases, I lifted right from the journal when I was writing the book. I also have, I guess, a bad habit of never deleting a text. So any of the texts that I referenced in the book are verbatim, lifted right out of my iPhone. And the journal was partially therapy, right? Therapeutic. Because both my parents were sick at the same time, I went through this really intense period. So to get it all out was really helpful for me. You know, as writers, that’s sort of how we process our feelings. And if I couldn’t sit down and write at the end of the day, what I would do is I would dictate into my iPhone as I was driving home from a hospital or a hospice home or whatever. So that did allow me to remember some pretty vivid detail.

JANA – Did you expect to use that material down the road for a book? Or were you not really thinking in those terms?

LIZ – I was, actually. I thought I was stressed as a working daughter, before my parents actually sort of, you know, moved into acute situation. Just the pure stress from me with the busy life that I described, you know, the high intensity job and the two little kids and never feeling like you have enough time. Just taking on a little extra grocery shopping or mowing their lawns or, Hey, we’re really confused about our medication. Can you come by, you know, this weekend and help us sort it out? I felt like that was really a big deal. And then they got sick. And I realized that was nothing. So I was already planning to write the book, and it might sound cold but I was like, Ooh – material.

JANA – Yeah, well, it’s very vivid. So let’s talk about some of the chapters. In the chapter called “Acceptance,” you wrote, “there are many ways our society can support caregivers, but caregivers must advocate for themselves, and prepare for their roles. And the first step in doing that is to accept it.” I wonder if you could expand on that and the conversation that you had with the nurse, Peg, who helped to shift your perspective.

LIZ – Sure, I love to talk about Peg because that was such a pivotal moment for me. The reason I think accepting our role is so important and how it ties to the advocacy and the support that we need that you just mentioned, is you often hear that caregivers don’t self-identify as caregivers. So I think labels are important in that they help categorize things, make things seen, and so that’s important.

LIZ – The other reason I think it’s important to accept is, for me, I spent so much time resisting my role as a caregiver: woe is me, I’m the youngest. Why do they always call me? I have no time for myself. You know, Waaaa, waaaa, waaaa. Well, there’s a lot of energy that went into protecting my victimhood, and resisting: I don’t want to do this. And when I shifted – and I’ll talk about Peg in a second – when I shifted to say, You know what, Liz? This is your life now, you’re in it, then I stopped wasting all that energy on, like I said, protecting my victimhood. And I was able to put that energy into caring for my parents and carving out my own life.

LIZ – So what happened was both my parents were diagnosed with terminal illnesses on the same day. And the weeks following those diagnoses were just intense. You know, my mom was diagnosed with ovarian cancer at stage IV and opted for no treatment because she was in her late 80s. My dad was diagnosed with dementia, and I was told to place him in memory care. So I’m looking for and touring memory care facilities for him, Well, where’s my mother going to go? I can’t ship her back to Cape Cod an hour and five minutes away, I wasn’t set up to have her come live with me. I need to move her to assisted living somewhere near me.

LIZ – So I’m going through all of this. And meanwhile, I’m completely ignoring my husband and kid, I’m completely ignoring my job as much as possible without getting fired. And I’m just completely overwhelmed. Because every move – you know, moving your parents to memory care, assisted living – comes with the dreaded canceling a phone and re-hooking up a phone. I mean, I think some of those calls to Verizon were like, more painful than anything I went through. So I’ve got all of that.

LIZ – And I’m going over to the assisted living one morning to interview a hospice nurse and I was still very much in a “woe is me” kind of weepy, victimized, overwhelmed kind of mode that morning. And this nurse comes in, and again, I think I’m going to interview her to see if this is the right hospice, if my mother is ready, and she just came into the room, all large and in charge, and was like, Okay, here’s the drill, here’s what we’re going to do. And in doing that, she started to tell me and assume that I was going to be there, pretty much around the clock, because when someone’s that late stage cancer, and they go on to hospice, the hospice delivers what they call a comfort kit. And that comfort kit has morphine and other painkillers in there. So someone needs to be there to administer those painkillers as needed to keep the patient as comfortable as possible. She made the assumption that that would be me and that that I was available.

LIZ – Plus, she was just rubbing me the wrong way, because she was just so assertive. So I think because I was so exhausted I had no filter, I said, Can I see you outside? We went into the hall, and I basically told her it was unfair of her to make those assumptions. I had a life, I had a job, I wasn’t set up to do this. And quite frankly, I didn’t even like her. And then I burst into tears. And I’m grateful now that my filters were so low, because by speaking so honestly, it opened up a really helpful conversation.

LIZ – And she ended up being someone who was pivotal in my caregiving experience, because she heard me, and she could relate to me. She told me that she was a single mother of teens. So she understood my pressures, blah, blah, blah. And immediately, she said, Okay, I get it. There was no judgment, like, This daughter doesn’t even want to help her mother? You know, it’s like, Oh, okay, here’s what’s going on your life, I’m going to help you prioritize, I’m going to shift some things around, and we’re going to make this work together. And so I don’t know what it was about that moment, I struggled to articulate in the book, I still struggle to articulate it now. I think in that moment, realizing that I had someone on my team, and that there was going to be no judgment about my feelings about being a full-time caregiver and they would support me unconditionally, I was like, Okay, you know what? We can do this. I got this. And I might as well step into it, because this cancer is not going away.

JANA – So she really helped you to move from resistance to acceptance.

LIZ – Absolutely.

JANA – So when you were speaking, it reminded me of a chapter where you talk about implicit bias. And I wondered if in the early part of the conversation, she made that assumption based on a kind of implicit bias. Maybe you can talk about that and how it affects caregiving.

LIZ – Sure. And I don’t know if she did or not, but maybe. So the implicit bias that I talk about in the book is, I believe that oftentimes, medical staff make these assumptions that caregivers, working daughters are going to be available to their parents. And actually, it’s not just my belief, I see this played out in the working daughter, Facebook group all the time, where parents are being discharged from the hospital to the adult child’s care and the adult child says, Whoa, I don’t know how to treat a wound or change a, you know, ostomy bag. Or how to even make this work with my job and my kids. And the hospital says, Well, we expect families to do that. So that’s what I was talking about: this implicit bias that oftentimes, I think, the medical industry says, Oh, well, there’s the adult daughter. She’s got this. She’ll take care of it.

LIZ – And one of the things I think about often, especially when I reflect back on that summer when my parents were both diagnosed and I was running around like a crazy lady – I mean, I barely had time to get dressed every day, I would wake up and immediately get slammed, you know, with the thought of my To Do list and just go. So there’s basically time for coffee, sometimes a shower, and if I did shower, you know, hair wet back in a ponytail, brushing my teeth, you know, what did I wear yesterday? Is it still clean? And it would be comfy clothes, right? Jeans, leggings, and go. So I wonder, if this is the way these women, these daughters are showing up in the doctor’s offices, they’re looking at us and they’re not seeing a person with a career, a high-powered executive, a really capable person, if all they see is this frump, like, She clearly has no life. She doesn’t even shower and hasn’t been out shopping in six years, so she’s got this. She will do all of this and be available and take care of this.

JANA – Uh-huh. Liz, in your own caregiving journey you went from feeling like a victim, as you mentioned, to finding the good in your situation. But you felt like a victim, I think, based on what I know about you and from reading this book, because your siblings weren’t really involved. Now, we don’t want to get into sensitive territory here, but what are some of the other traps of caregiving with siblings?

LIZ – Yeah, well, in the case of my sisters, I wouldn’t say they weren’t involved. I would say they couldn’t keep pace.

JANA – I see.

LIZ – Yeah. So you know, I said earlier, I didn’t think I was the one cut out to be the caregiver because I’m not the nurturing type. What I am, though, is super organized and quite bossy, quite frankly. So you know, in hindsight, and I don’t want to water down the sibling stress and strife because it’s real. But in hindsight, I can see I also didn’t make a lot of space for them to be helpful. Because I was like, Okay, there are 90 things on my To Do list, and I’m going to get 40 of them done today come hell or high water. And they were like, Well, I’m still considering how to approach, you know, step one, right? So it was totally different work styles. So in their mind, I’m sure they were as involved, as I feel I was, I just, they didn’t keep pace with me, which was really frustrating.

LIZ – Or, you know, they knew that I was capable and so they let me, and oftentimes that would lead me to feeling like the victim again, like Oh, just leave it to Liz. Oh, Liz has it. Waaa, waaa, waaa. So the thing with siblings is – the things with siblings are, I should say – there are siblings who don’t get involved. There’s a saying among caregivers and among the medical profession, that there’s always one. There’s always one sibling who steps forward, and basically takes on the lion’s share. And whether that’s by default, or design, it just seems to happen.

LIZ – And what I learned in my experience was, again, it’s the protecting your caregiving energy, so much easier for me to accept, this is what I do. This is what my sisters do. Don’t expect them to do something else. Crisis caregiving, busy lives, that’s not the time to try to change somebody. We know we can’t change anybody. But you know, definitely not the time to think about that. Just accept where the strengths and the weaknesses are and move on. Which is a bitter pill to swallow for some people. And I get it. You know, when you’re like, your work is struggling, you’re wearing the clothes that you left on the floor the night before, your husband is angry that you’re never home anymore, you missed the kids recital, whatever it might be, and your sibling’s going on vacation? It’s infuriating. I get it, but we can’t control them.

JANA – Right. So there’s some really great stories in here, and you’re a really good storyteller. I would love for you to share with the listeners one of the stories that I liked that you talked about in the chapter “Renew,” where you talk about your reaction to someone saying you need to take care of yourself. This was on a Friday afternoon, less than a week after you’d rush to your parents’ house following the alarming call from your sister telling you something was wrong with your parents. Take us through that. And the nightmares that you were having around that time as well. Really vivid.

LIZ – Oh, yeah, the nightmares were something that I think psych professors could put in books. I was stressed beyond belief at that time. You know, there was all the To Do’s that I mentioned including, you know, calling Verizon that many times. But also, you know, these two medical diagnoses that were sad and scary, and you’re trying to suss out how to manage those, you’re looking at housing, they’re all these logistics, you realize its end of life. Do they have a will and a burial plot, you know, all that stuff, right? All at the same time. It was completely overwhelming.

LIZ – And the stress was just palpable. In fact, at one point, I was brushing my teeth and the front half of my front tooth chipped off. Which was a lovely look for the entire summer, when I was too busy to get it fixed. So you know, wet ponytail, frumpy clothes and half a front tooth. It was lovely. It was lovely. But that tooth chipped from grinding. In my sleep, I was grinding my teeth. And at night, I would have these really vivid and random nightmares. You know, those dreams where like, one minute you’re in Central Park and there’s a bike, and then you’re at a friend’s house. And then I was, like, lying face down. And I mean, they were just – I’m not even really sure how to explain them, Jana. But that, I mean, to paint the picture, that was the stress I was feeling. And I was fueling myself every morning with coffee. And then I would be out all day long. So I would throw a couple of Diet Cokes into my purse, and little packages – not little, big packages of Twizzlers. And for some reason that summer I just felt chewing on the Twizzlers was, like, a way to, I don’t know, work out some energy or something.

JANA – Yeah. Daytime grinding of teeth.

LIZ – So my diet consisted of – yeah, exactly. So my diet was caffeine and sugar. I mean, super healthy, right? And then at night, I’d come home and I’d be so caffeinated I’d have a glass of wine to unwind. You know, so I was just so not the picture of caregiver health or self-care.

JANA – Accompanied by a sleeve of Oreo cookies, which I love.

LIZ – Oh, thanks for bringing that up. I forgot. Yeah. I keep promising – you know those wine pairing guides, you know, what wine goes well with… I keep promising to do one, cuz who knew there are lots of varieties of Oreos. And so I’m kind of an expert. [both laugh] I thought about that. Yeah, so that’s the picture. Like that’s how healthy I am at that moment in time. And I’m at the hospital, my dad’s actually in the psych ward at this point because the dementia plus the anti-psych drug plus the urinary tract infection landed him in the psych ward, which was its own story in stress. But you know, that’s the setting. To see your dad in this scenario is pretty, pretty awful.

LIZ – And I realized I hadn’t called my boss. I work across the country from most of my co-workers, so they didn’t realize I wasn’t at my desk all week because I would, you know, respond to emails, take client calls, do the bare minimum. But because I never, like, basically asked for time off, because I didn’t have time and it was just this first seven days of intensity. So I thought, I really need to check in with my boss and fill her in on what’s going on. So I left the psych unit, and the only quiet place I could find at the hospital was – outside the emergency room someone had left a wheelchair.

LIZ – So it’s Friday afternoon, it’s been a week from hell, I’m missing half a tooth, I think. I’m not sure if I was at that point or not. And I called my boss and said, Here’s what’s going on, and, I want you to understand what’s happening and where I am. And you know, I’ll figure out what I need from you and what I can deliver at work and blah, blah, blah. And she said what I think are the six or seven most annoying words for a caregiver to hear: you need to take care of yourself. Totally agree. Really wish I was. You know, but how? How? And as caregivers we hear this all the time. And what I think is so stressful is we know that. Of course we know that. What we need is for somebody to tell us how to do it. And in that moment, she suggested one simple thing, which was make sure you’re drinking enough water. And I started to after that. I started carrying around a big plastic Camelback water bottle. And it was the first step in taking care of myself and adding things on.

JANA – Mm-hmm. So listeners, Liz lists 50 things you can do to practice self-care. So there’s no excuse. And I hate that prescriptive phrase when I hear it: take care of yourself, you really need to take care of yourself. You just want to slap the person who says that.

LIZ – [laughs] Exactly.

JANA – Like, right. I know that’s what I need to do. But anyway, so there are lots of great ideas Liz provides you with, for ways you can practice self-care, so there’s really no excuse even if it’s hard to hear this. What were some of your favorite things to do besides getting to that water, drinking Sauvignon Blanc with a sleeve of Oreos?

LIZ – [laughs] I realized recently, you know what? That’s self-medication, not self-care. But oh well.

JANA – That’s true. That’s true. But it’s a form of self-care.

LIZ – It is. Right. I mean, it’s basically, you know, how do you nurture yourself? And for me, that glass of wine, and I think I mentioned this in the book, sometimes I’d wake up and it would still be there, because it was the ritual. You made it through another day, Liz.

LIZ – And granted, you know, maybe a healthier self-care would be to have a cup of tea at the end of the day, or you know, lemon water, but for me it was, [sighs] You did it. And this tastes really good, and you deserve it. The other one that I think is kind of different is, when my mom moved into a hospice home, going to visit her was stressful as well, because I never knew how she was going to be. And she lived in a hospice house for three months. And some of our visits were absolutely what you want them to be at end of life. You know, wonderful and sharing memories and stories, and telling each other what we meant about each other. And other times, she wasn’t in a good way. She was facing death and she was upset. And, you know, it’s really hard to see your mother like that.

JANA – Right.

LIZ – For some nights, I just didn’t want to go. You know, I was exhausted. I knew: go, because you’re facing limited time. But, you know, I just wanted to have Sauvy-B and Oreos. I was exhausted from work. Or I want to see my kids. So it was this long road up to the hospice home. And every time I turned on to that road, you know, I’d start to feel the nerves and sometimes the dread and anticipation: what am I – what situation am I walking into today? I would play – and I refuse to tell you the song, so don’t even ask me –

JANA – okay.

LIZ – but I would turn my iTunes on to this one song, and I would belt it out on the way up. And it’s – the reason I won’t tell you the name of the song, it’s from one of those, like, Disney or Nickelodeon teen movies that my kids made me watch with them. And I absolutely just, I love the soundtrack. And this one song, I think it’s, like, sung by a teenage girl who’s, like, standing up to the school administration or something in the movie. But it was like my little chick empowerment, “I can do this” song. And that was just my little form of self-care, because singing releases positive feelings – with the windows up when no one can hear me, because I have a terrible voice – and, you know, the song was just cheesy inspiration. And so that’s just another kind of silly form of self-care. But it worked for me.

JANA – Yeah. Hey, there’s nothing wrong with that. Liz, like I said, there’s lots of things to like about this book, but one of the reasons I really like it is because it’s brutally honest, it doesn’t hold back. You talked a lot about what was going on in your personal life while you’re caring for your parents, and you also talk about some of the relief that you felt when your mother died, which is, I think quite common in caregivers even if it’s not spoken about. You went back to work soon after your mom died. Talk about what you experienced and your feelings around that. Besides grief, obviously.

LIZ – Yeah, yeah. No, and I appreciate your pointing out the brutal honesty because, again, one of the goals was – I didn’t mention this when I said you know that no one feels alone, that people feel that there are actionable things that can do to make this situation better. But a third goal as I was writing it was for people to not feel bad about really normal feelings. Really normal feelings that sometimes non-caregivers would be like, You’re a horrible person. You wanted your mother to die? No, of course I didn’t want my mother to die. But knowing that my mother was in the dying process, and having it take weeks, and being exhausted? Let’s just get to it, right? I’m going to be sad, but I’m also going to be relieved. You know, it’s not something you always talk about in non-caregiver, mixed company. But it’s something I wanted other caregivers – because I know if I’m thinking it, someone else is thinking it too. So I want other caregivers to feel okay about that.

LIZ – So I had taken so much time off that summer, not in the form of blocks of time, but in the form of working all kinds of flex hours. And I used my vacation time and my sick time, you know, and a combination of working, you know, some days I worked three hours or five hours, some days I worked a full day, whatever. Which might be a good time to put in a little side note here, because the United States does not have great leave policies, federal leave policies. And we’ll throw that aside. But I had to put that plug in.

JANA – That’s okay.

LIZ – Plug for change. I would have loved to have taken some time off after my mother’s funeral, to process and just unwind and have a few days and feel your feelings. But because I had taken so much time off, and quite frankly I was really worried about how I was showing up at work, and what the perception of me at work was. Because, you know, chipped tooth, wet hair, making phone calls from ambulance bays and that sort of thing isn’t the most professional look. So I rushed back to work feeling like I had to.

LIZ – And in that first week, we found out that a client that the whole team had pitched in and tried to sell a potential client, chose another agency. And the reason they didn’t go with our firm, they told my boss, was because I was positioned as the lead on the account and they felt like they had no faith or confidence in me. I thought the day that I showed up for that pitch that summer, I was like, Oh, I really pulled it together for this one today. But clearly I hadn’t. And then another client I knew was missing my presence on the account. So one weekend, shortly after my mother’s funeral, I knew this client was exhibiting at a trade show in the York City. And I thought I’m going to show up at this trade show on Sunday and really show the client that I’m dedicated and want to see what they’re doing. And I walked up to the trade show booth and the CEO of the company said, Ach – we are so behind on our goals because of your mother. Or, Your mother’s situation, or something like that. And shortly after, that client fired us too. So it was just like, what can you do? Life happens. What can you do. But it’s still, in the moment, it’s really scary and frustrating that we can’t do it all. And that there are consequences.

JANA – Yeah. On the flip side of that, the “Reflect” chapter is important because as caregivers, we spend so much time reacting. And you write that it’s hard to see the gains of caregiving when doing it. We tend to when we look back. So maybe you could talk a little bit about some of your gains.

LIZ – Yeah. And that chapter was very difficult to write, because you have perspective when you come through on the other side. And I wanted to share that perspective. But I didn’t want to minimize what I had experienced going through it or what other people who might be reading the book are going through. You know, there’s nothing worse than, And it’s all going to turn out great! As somebody else is walking around with a chipped tooth and nightmares and eating their Oreos and drinking their Sauvy-B. So I tried to be really sensitive to that in writing that chapter.

LIZ – But at some point I started to think about caregiving as something that was giving to me, as opposed to something that was taking from me. And it was probably around the time that my mother was in the hospice home and I shifted from, you know, I said our relationship was good and it was, but it was also typical mother-daughter. Everything she said, as harmless as it was, as her daughter I was like, Oh, she doesn’t like my hair? You know, when all she said was, Your hair is different today. You know how those relationships can be fraught. And once I realized, there’s nothing more to do in this relationship except to just be in the relationship and sit with her, there’s nothing to work out, nobody’s saying anything with undertones, we’re just together. I think that, for me, was a really big shift.

LIZ – And in that same shift, about the relationship with my mother, the other shift was, Whoa, there’s some really amazing things coming out of this experience, as hellish as it is. In the beginning when I was resisting, all I thought about was what caregiving was taking from me. It was taking my ability to advance my career or perform at work. It was taking away from my time with my kids. It was taking my time from my husband. It was taking my sleep and my free time and any hobbies I might have had, etc, etc, etc. But in that shift with my mother and realizing like how amazing it is to just learn to be in a relationship with somebody with no expectation, and just be with them, you realize, Wow, that’s a huge gain.

LIZ – And I had stumbled upon some research, in writing the book, about this thing called the caregiver’s gain. And there are some professors, one’s at Johns Hopkins University and one’s at the University of South Florida, who have done research on the fact that caregivers compared to non-caregivers, actually do have these gains around things like better cognitive functioning, more physical strength, more emotional well-being and even better longevity than non-caregivers. And they attribute it to the fact that caregivers connect to people in a way that we all desire to do. I mean, as humans, we’re all looking to make this really beautiful connection with another human being. And when you’re caring for someone in their most vulnerable moment, when you sort of get to that point I did with my mother, that this is what it’s all about. It’s a pretty amazing thing. And then the other thing around even career, there were so many things I lost in my career, including those two clients, the week I came back, but what I gained was perspective. You know, I don’t get so upset when I send an email with a typo anymore. Maybe to my boss’s chagrin, but I’m like, Oh, I spelled not with a “u” instead of an “o.” Who cares? Nobody has cancer, right? Nobody’s dying. And you realize what strengths you have. And so that is something that you can bring to your career.

JANA – Yep, in some ways you just don’t give a shit anymore.

LIZ – Yeah, that’s another way of saying it. [both laugh]

JANA – It really calls upon you to exercise muscles that you didn’t even know you had, in so many ways, right?

LIZ – Mm-hmm. Totally.

JANA – And then, I’m not surprised by those findings because it does strengthen you, as painful as it is. And you can’t get it except by going through it. Or, you know, one of your mantras is from the Robert Frost poem I think: the only way through it is through.

LIZ – Right.

JANA – So speaking of your career, in February of 2018 your hours were cut back as part of a staff reduction. And you saw it coming, after spending a lot of time caring for your parents. And then, Liz, your husband was diagnosed with pancreatic cancer, which I’m really glad that you wrote about as hard as it probably was to write about. Once again, you went back to caregiving, and this time for your husband. At this point, your parents were gone. Your parental caregiving responsibilities, at least as far as they were concerned – not your kids – your parental caregiving had ended. So I wondered maybe if you could talk a little bit about how spousal caregiving was different for you. And before you answer that question, I just want to share with listeners that your husband has passed away, and I was so sorry to learn of that. How was spousal care giving different for you?

LIZ – It was different and the same. And just to what you just said, I’m glad that I wrote about it, too. I wasn’t going to put it in the book but now, given everything that’s happened, I’m glad that I did. And it was different in this way for me: I never resented it. I never felt like it was an obligation. It just felt really natural to me. And I don’t know if everyone experiences that. But again, it’s this idea, not that I made space for my husband to have cancer, we never planned for that, but I intentionally married my husband. We took those vows in sickness and in health. I don’t think you necessarily really think about that when you’re making those vows. But this is your life partner. And he’s sick and I’m there, it was just a natural move. Didn’t ever – never really thought about it.

LIZ – Whereas with my parents, I spent all that time thinking about like, this isn’t what I’m supposed to do with my life. And, why me? And, you know, I have to go back to the Cape, I have to fix this. And not that you don’t step up and do it, but the thought process around it was really different. And I noticed that as I was going through it, it was more like, Okay, he has cancer. Alright, what’s next? Okay, we’re having chemo. This is brutal. Okay, what’s next? It was just – it felt more like part of the marriage, if that makes any sense.

JANA – Yeah, it makes total sense.

LIZ – The one thing that was interesting to me and a relief, was that I was able to lean on what I had learned and written about in my book. And I say that’s a relief because I had to go through those 10 steps, you know, acceptance, absolving, renewal, self-care. So I was like, Whoo, okay, this really works! So I was like, Okay, my book isn’t crap. So that was, that was really helpful to me, I think, too. Because I had been through caregiving, I had learned so much with my parents. I knew what my strengths were, you know, my strengths were organization, I’m really good in a crisis. I’m a really good advocate to doctors and medical teams. So I knew my strengths going into the situation as well. So that probably helped me.

JANA – Yeah. And how are you doing today?

LIZ – I have no idea, to be perfectly honest. It’s just – it’s only a couple months. And it’s a roller coaster, it’s, you know, it’s hour-by-hour, quite frankly. You know, getting more to day-by-day, but still hour-by-hour. Ultimately, I know I will be okay. Because I know through all these experiences that I am pretty strong. And that the only way through is through. So I know ultimately, you know, I’ll be different, I’ll be forever altered. But ultimately, you know, I’ve got two feet, I’ve got this wealth of strength to stand on. I understand that change brings change. Kind of a vague thought there, but you know, things will be different, but I will be okay.

LIZ – I think the other thing is just what I’m learning, though, is that this is chronic pain. Actually, you know, so “the only way through is through” probably doesn’t apply here. This isn’t something you get through, I’m learning. This is something you learn to live with.

LIZ – And my kids are incredibly resilient. They’re going through the end of the school year, so their heads-down and focused. I think it’s a nice distraction for them. But they’re teenagers. So if I don’t know how I am, I definitely don’t really know how they are.

JANA – Uh-huh. That’s so funny. How old are they? You’ve got two kids, right?

LIZ – Yeah, they’re 14 and 16.

JANA – Your daughter’s 14?

LIZ – My daughter’s 14.

JANA – 14. And your son is 16.

LIZ – Yeah, yeah.

JANA – Liz, do you think that they’ll care for you when you get older?

LIZ – I tell them they will. So one of the things that – I’m laughing, I’m laughing because one of the very common refrains in the Working Daughter community is: I will never put my kids through this. And so many times, I thought the same thing as I was going through parental care. And in fact, I think I mentioned this in the book. I remember coming home one day – my husband, like, kept every receipt, I mean, he’d keep a receipt from a convenience store when he bought a water bottle, you know, he kept everything, and – I teased him about that, I think I found one time – and I would always say, Oh, were you keeping the receipt for that water bottle?

LIZ – But I came home one day, and he had this big desk in our living room where he paid all the bills and did all the paperwork. And it was just jammed with stuff. And I came home from my parents one day and I said, Clean that out now! If you don’t clean that out now our kids are gonna have to clean that out. Because I must have been at my parents’ house, you know, de-cluttering or something. And you say, I will never do this to my kids. Now, I keep telling my poor kids, I’m like, Make a lot of money, you got to take care of me. I expect you to take care of me. So terrible. So if I wrote any of that in the book that, you know, I think I do write about that, right? Setting yourself up, planning so that you see what you’re facing. So get ready for it, ladies. Well, right now, I’m being completely hypocritical about that. But I give myself a pass, you know?

JANA – Yeah, of course. You have a long pass. So are you working now full-time? Are you taking some time off? When I say work full-time I mean in the marketing job.

LIZ – Yeah, I’m on bereavement leave, currently. But I go back to work next week.

JANA – Okay. Wow.

LIZ – So it’s be interesting. That’ll be another – right? – another new, another new normal as I talk about, to face.

JANA – Yeah. You alluded to this earlier, but I’ll just ask for formality sake. What do you want people to get out of this book?

LIZ – Certainly, that it’s okay to feel all the feelings about caregiving that you probably feel. One of the things that was really important for me in writing this book was, based on the experiences I had when I started caregiving and started talking about it and I would, you know, I’d say, Oh, well, you know, I wasn’t able to do that, or I’m not going to go to that I’m caring for my aging parents. And people would look at you and they’d put this like, saccharine sweet smile on their face and tilt their head a little and go, Oh, what a blessing. And in my mind, I’m like – it’s not a blessing. It’s a curse! You know, I’m like, I’m missing – again, you know, I was in that phase of, I can’t do this, I’m not doing that. Waaa, waaa, waaa. I want women and men who go into caregiving to feel okay thinking – whether or not they say it out loud – but thinking, you know, this is not always a blessing.

LIZ – I’ve been told that using the term “burden” in the caregiving community is such a big no, no. Because how horrible to talk about your parents as a burden. Well, sometimes it feels like a burden. And that’s okay. One of the things I talk about all the time in the Working Daughter community is, caregiving taught me that two things can be true at once and we can hold two opposing truths at the same time. I’m relieved that my mother died and I’m sad that my mother died. I want this to be over and I never want to lose my parent. I think this is a huge burden and I also am grateful that I get to care for my parents and give back to them. So all those opposing thoughts can happen at the same time. I think it’s important that people have space for that.

LIZ – I also think it’s important to acknowledge that not all parent-child relationships are good. That some people are finding they’re caring for parents who maybe abused them or abandoned them, or whatever the situation may be. Or their parents are raging alcoholics and they’re going to care for them and, you know, trying to deal with their codependency issues. And I think it’s changing now, but the literature when I was looking for support seemed to write for like that perfect, Leave it to Beaver, you know…

JANA – The Hallmark… Hallmark caregiver.

LIZ – …family. Yeah, the Hallmark family. So that was really important for me.

JANA – Uh huh. So here’s my last question: will you share the significance of the butterfly on the cover of your book?

LIZ – Oh, sure. My mother loved butterflies. It was her favorite little creature. And that same day that we talked about earlier, where I went to call my boss, you know, I’m outside the psych ward. My dad’s up there. It’s been a week of me not being at home and running around crazy. And you know, I haven’t even told work that I’m not at work. So that is to set the stage – it was that week. Again, we’re not sure if the tooth was in or out yet, but if it was still in, it was pretty close to being ground out.

LIZ – And as I was sitting in that wheelchair, where I made the call to my boss, I looked down on the ground on the hospital parking lot. And there was always this little red monarch butterfly, made of silk. And I picked it up, because I thought it was significant that I saw a butterfly in this week that was, you know, consumed by my parents and all these emotions. And I brought it to my mother. And we stuck it to the TV or something in the assisted living where she was. And then when she moved to hospice, we taped it to the TV so that she could see this little butterfly all the time. And the night that she died, one of the things you have to do is you have to pack up her belongings from the hospice home. And she didn’t have much with her there in the little room that she was in, but I packed things up including the butterfly.

LIZ – And I couldn’t bring myself to unpack – I left that suitcase in the trunk of my car for months and months. And then one day when I needed some strength, I thought, You know what? I need that butterfly. And now it is taped in my office. And it’s a reminder, you know, that I can do this. That I’m strong, that I’m not alone and, you know, all that good stuff.

JANA – That’s awesome. We’ve been speaking with Liz O’Donnell, founder of the website, Working Daughter and author of the forthcoming book, “Working Daughter: How to Care for Your Aging Parents While Making a Living.” It’s a roadmap to caring for aging parents without losing your job, your marriage or your sanity. The book is heavily researched, it’s practical and it has a ton of useful information. Plus, it’s filled with frank and emotional anecdotes from Liz’s experience of caring for her own aging parents. “Working Daughter: How to Care for Your Aging Parents While Making a Living” will be available August 8th, but you can pre-order the book now on Amazon.com. And be sure to check Liz’s website Workingdaughter.com. And if you’re in this position there is a great Facebook group that Liz has created and it’s a closed Facebook group. So don’t forget to join the closed Facebook group Liz started called Working Daughter. Liz, thanks for being on the show, and for all the work that you’re doing to support working daughters. It’s really so refreshing, it’s so honest and I’m a fan.

LIZ – Thank you. I’m a fan of yours, too.