The Nuanced Life: The Radical Freedom of Caregiving

So many of us are in our have experienced seasons of caregiving. For you, maybe it was a parent, a child, a pet - someone who needed you to help them get through the day in some form or fashion. In this episode, Sarah and Beth share stories of caregiving from our community and talk about what caregiving means to them.

*This episode is explicit.

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TRANSCRIPT

Sarah [00:00:07] This is Sarah Stewart Holland.

Beth [00:00:08] And this is Beth Silvers.

Sarah [00:00:09] You're listening to The Nuanced Life, a Pantsuit Politics Production.

[00:00:12] Music Interlude.

Beth [00:00:29] We're so glad that you're here today. This summer, on Fridays, we're reviving The Nuanced Life, a podcast we used to make about the messiness of living wisely. As part of that series, today, we are sharing stories from three listeners about caregiving. Mary Kate has a child with very intense food allergies. Another listener’s mother is living with her, her husband and their four kids, and it's a struggle. And Kelli has, in the last year, been the responsible adult child as her dad suddenly passed away and her mother started showing signs of dementia. So, we're going to talk about all of those stories today.

Sarah [00:01:07] Before we do that, summer is for reading. And in case you didn't know, we wrote two books and I think they would make excellent additions to your summer reading list in a presidential election year. Our first book, I Think You're Wrong, (but I'm Listening): a Guide to Grace-filled Political Conversations, is available wherever you get books; as is our second book, Now What?: How to Move Forward When We're Divided (About Basically Everything). So, we hope that you'll take a minute and share our books, or read our books, or pick our books for your book clubs. Not to brag, but Hillary Clinton did call our books book club staples. So, in case you needed that endorsement, that's great. So, check out our books. All the links are in the show notes.

Beth [00:01:48] Up next, let's talk about caregiving.

[00:01:50] Music Interlude.

[00:02:00] Sarah, I feel like stage of life is so relevant to caregiving. When you hear that term right now as we're at the age of 42 and 43, what comes to mind for you?

Sarah [00:02:13] Our age is definitely known for being the sandwich generation or the Panini generation, which I thought was a great term one of our listeners used. Being caught between taking care of kids, still taking care of kids even if they're not little anymore, and taking care of parents. And while none of my parents, thank goodness, have struggled with any intense medical situations, there's still just a lot involved in being the adult child, especially the adult only child of parents.

[00:02:47] I didn't talk a lot about this on our main show, but my father moved in with us for several months over the course of 2023 and 2024. And I've always loved the idea of multigenerational household, but there's just this intensity of feeling-- especially because I was the only female in a house of five men and boys-- that caregiving just became such a loaded term. It sounds so positive when you put the word care and give together, but it gets really heavy really fast.

Beth [00:03:22] And for me, I think first of my grandmother because she spent her entire adult life taking care of her mother. She moved her mother in with her after her father died, and she took care of him after he had a stroke until his death. And then her mother had pretty serious dementia and lived with her for many, many years until we just could not keep her in a home setting anymore. And then it felt like very shortly after her mother died, my grandmother started showing signs of dementia, and my dad stepped into that really intense caregiving role for her.

[00:04:02] And so, even more than the time when we had small children, I think first of her when I hear the term caregiving and of the full-time job that it represents when you have a parent who cannot care for themselves anymore. The organization of medicines, the coordination of doctor’s appointments, the helping someone get in and out of bed every day, helping them shower. She did so many years of caregiving with so much intensity that she's sort of the avatar for caregiving in my mind.

Sarah [00:04:37] Yeah, caregiving does seem to mean a little bit more. It's not just parenting, there is a lot of caregiving involved in parenting, but I don't think of all parenting as caregiving. I think more about caregiving when I think about helping Felix manage his disabilities, particularly type one diabetes. And there's like a medical component. I just had a conversation about caregiving with a beloved friend whose son has a very intense genetic disorder. She's having to have surgery, and she's describing it as a vacation. And I said, man, we got to find a better way for full time caregivers to get vacation than surgery. That doesn't seem like a great solution to me, but it really is a gap in our culture and our society when someone we love requires intense care. That seems to be really what we mean when we say caregiving. All of a sudden someone has a diagnosis or the onset of dementia or a disability that requires intense care. And so, often it just falls to the family members surrounding them to pick up that mantle.

Beth [00:05:45] And I think of it also as having this judgment component, like the person who requires that intense care can't fully discern all of their choices, just requires that decisional capacity from you too. I think that was one of the hardest things, is watching my dad care for my grandmother. The moment when we had to decide, okay, is it time to move her into a skilled nursing facility? And not just being able to sit down with her and talk through that, it was so painful. And I can imagine with a child where Felix is growing in his decisional capacity, but he can't every day understand the short term and long-term effects of the way that you all are managing his diabetes. That's a fatigue that goes along with caregiving, making all those choices.

Sarah [00:06:41] Fatigue is definitely the right word, but you do build muscle memory, I think, over time. I shared a really funny reel the other day on Instagram, and it was like the first six months of a type one diabetes diagnosis, and this golfer sees a crocodile at the edge of a water trap and runs away in a very scared type of way. And then I was like the second six months and he walks right up to the crocodile, taps his tail and the crocodile goes in the water And I thought, yeah, that's about it. That's definitely it. You build muscles you didn't know you had. You gained capacities you thought were unavailable to you. I was just talking about this with my therapist. I think it just becomes this sense of I can handle more than I thought I could.

[00:07:30] And it feels like the only word I can think about is a weird type of freedom, which seems like a crazy word to use when you're talking about caregiving in the way that often it shackles you to another person. But you know this feeling of look what we did, look what we've overcome, look what we've survived, look at how we are still experiencing joy and happiness and delight in the face of this thing that we thought would take us out is really empowering. Or at least that has been my family's experience. And I think that's why caregiving is so intense is because you are seeing your capacity in the face of someone you love maybe losing capacity. And it's taking, it's giving, it is doing all of that at the same time.

Beth [00:08:26] Well, that sense of look at what we survived is very relevant to what Mary Kate [sp] shared with us. Mary Kate's daughter, Molly [sp], has a host of serious food allergies that she discovered early. Mary Kate said she felt treated a little bit like a hysterical new mom by pediatricians as she was expressing concern about this really intense eczema that was showing up every time from the first feeding in the hospital for her daughter. But at seven months old, they realized that she had this battery of food allergies, and they changed her diet. And it immediately changed everything her sleep, her fussiness, her growth, her skin.

[00:09:04] But it also changed everything for the family because they had to go into hypervigilance about food, which Mary Kate said is everywhere, all the time. I've heard you say that too. You just don't think about how present food is until it becomes somewhat threatening to your child. And so, Mary Kate said her safety and health are the moment of choice question for everything; from our careers, to our home, to her schooling, to holidays, to vacations, to date nights, to play dates, to activities, to everything. But they did it. And at the age of nine, they enrolled Molly in the tolerance induction program through the Southern California Food Allergy Institute.

Sarah [00:09:44] So fascinated by this.

Beth [00:09:45] And they flew across the country during the pandemic. And for three and a half years, every single day, Molly ate an evolving list of very strange food in very precise amounts. Mary Kate shouted out camel's milk is part of this regimen.

Sarah [00:10:02] I didn't even know that was a thing.

Beth [00:10:03] I didn't know any of this was a thing. I think this is so fascinating. But last January, Molly graduated from this program. She is in remission from her food allergies and has achieved what they call food freedom. And Mary Kate said, this has been so hard in absolutely every way. And it requires her to continue every single day to focus, to maintain that food freedom, but they are so proud of her. And Mary Kate said that she and Molly got necklaces that say, "Steadfast on the outside and badass on the inside." And she writes so this commemoration is for all of us to express our badass selves through steadfast commitment.

Sarah [00:10:42] Yeah, I reported on this tolerance program for the Good News Brief because I think it's such a phenomenal scientific breakthrough for people who struggle with food allergies. I kind of want Mary Kate to send me the list. This is for my own edification and fascination. I want to see the list of the foods that Molly was eating. I think it's so interesting especially if you're in the food is medicine, can be medicine mindset. That's literally true for her daughter. It's like in many of the same ways that diabetes is this sort of philosophical lesson in life. I think about this food allergies treatment and how precise exposure to the things that can kill us can give us a type of freedom, right? Like the exact thing I was just describing. It's incredibly powerful. And I told Felix the other day, I was like, look, I know it sucks-- I mean, I don't. I really don't know what it's like to delay my eating 10 to 15 minutes every single time I have to eat.

[00:11:42] But I was trying to empathize with him and say I imagine it's hard all the time to say, you can't have this. Your brother's could [inaudible]. You have to wait. Blah, blah blah. But I was like, man, if you can get this as a child, if you can understand that sometimes I have to do things I don't want to do in the short term so that the long term I gain a type of freedom, you will have done it. You will have learned a lesson most adults never learn, and who spend their lives in lots of different ways, trying to run from that lesson. Like, you can do it like. And that's the thing about caregiving and difficult medical diagnosis and caregiving for people with difficult medical diagnosis can teach us, is there's no running from this. I was telling my therapist yesterday, I'm like, this is what diabetes has taught me; is that you're not entitled to anything. You're not entitled to an easy life. You're not entitled to your health. Life is full of hardship and suffering, and it is also full of joy and delight. And the sooner you can make your peace with that, the better off you'll be.

[00:12:46] Music Interlude.

Beth [00:12:56] I think it's another dimension of caregiving to just recognize how much growth is available in the person that I'm caring for. So, with Mary Kate and Molly, they've experienced this just tremendous shift. And I know with Felix, you see tremendous shifts in him all the time. He's still growing and changing and developing and building that kind of capacity and learning those lessons. It's tough in a different way when there is not a lot of room for growth. And I think that's what our next listener is dealing with right now, because she and her husband invited her mom to come live with them in 2019. So, at home, they have four kids and mom.

[00:13:39] And mom is pretty young and doesn't respect boundaries and can be cruel with her words. And it's been a struggle to navigate, and you can't look at an adult parent like that and think, well, you're going to age out of this phase, or you're going to acquire some maturity in perspective here. Some people, especially people who struggle with boundaries and are cruel with words this late in life, it's hard for them to show improvement. And so, our listener is really trying to show her kids we value caring for this person. We value our elders. She said we also value our sanity. And so, they're walking a tough line there.

Sarah [00:14:27] As I said at the beginning of the show, my dad moved in with us on Halloween in 2023, and he moved out while we were on spring break in April of 2024. My father was an excellent roommate, house guest-- don't know the right word for it. He really was. He was so careful and considerate. He would go up to his room and watch TV by himself, sort of give us time, stay out of our way. Would help a lot picking up the boys, helping around the house. And still it was really hard. And he was the one that would say that. He's like, look, it's still really hard. It's hard on me; it's hard on you. It's hard for me to be here. It's hard to share your home. Because it's a type of background stress. Even if your parent that's living with you is super accepting and wonderful, you just feel watched in a way you don't when it's just your immediate family?

[00:15:24] You just feel not judged necessarily, something lighter than that. But I think in a case where the person is not respecting boundaries and being cruel, you might feel judged in a very open way. And all of us just want to hear that we're doing a good job, especially when it comes to our home and our kids and our marriages. I think everybody just wants to wake up every day, have someone look them in the face and say, you're doing such a good job. And so, it's really hard, like I said, even in the best situation because there's that sense of what are they thinking? Am I being warm enough? Am I giving them their space? It's just this constant chatter in your head. So, I can't imagine how difficult it would be if the person was tough to be around.

[00:16:19] Now, we are all tough to be around at different times, but I think that's really, really hard. But recognizing we're doing this for a reason, the person is not there to make us feel good all the time. This person is in our home because we value our elders, and this is a reflection of our ideas and ethics. And that is not always easy. Living up to your ideas about who you are as a person and a family is not always easy. In fact, I would argue if it is easy, you're probably falling short in a couple of places. It shouldn't be easy. And so, I just commend this listener because I think half the battle is just recognizing where it's hard and giving yourself space for that.

Beth [00:17:03] Well, I mentioned my grandmother at the beginning and her mother living with her for so long. And her mother, my great grandmother, didn't do well with boundaries and could be cruel with her words. I loved her very much. She said things that were so funny. We played a lot of rounds of cards together and I have happy memories. But I also understand better as an adult that she was judging my grandmother and she did expect things to be a certain way, and it was a very small house and no one had a lot of privacy.

[00:17:39] And she said exactly what she thought with no filter or consideration for anyone else. And it was tough. And it was tough for decades. This was not a short-term situation. And I do think I learned a lot observing that situation about exactly what you said, that living your values is not easy, and that you love people even when they're hard to love, and you love people with a generosity of spirit that they don't always extend back to you. And that really the best you can do is just try to be the person you want to be in the face of someone else being who they are.

[00:18:24] This listener asked if we were familiar with Lindsay Gibson's work. She writes about emotionally immature parents. And I had not engaged with her work, so I listened to a couple of podcasts this morning that she was a guest on. And I thought it was helpful to have a framework of understanding that some people really cannot get out of main character mode, that they really do see everyone around them just as extensions of themselves, reflections of themselves, that they have a hard time stepping out of their own experience to say this is another full and complete person whose experience is as intense as my own.

[00:19:07] I think that's valuable. I also think it's tough because with your parents, even though they are who they are, they're still changing. And you still have to have a little bit of fluidity around what they might be capable of, not like a toxic attachment too. If we keep treating them kindly, they'll come around and never say something ugly again. But leaving some softness and some room for the relationship to evolve. And I think the word fatigue just comes to me again, because I think constantly navigating that tension is exhausting in its way.

Sarah [00:19:47] Sometimes I wonder what our expectations are around these relationships. I mean, I don't know anybody who has a relationship with their parents where they don't get their feelings hurt and they don't feel like their boundaries are violated. Does that exist? Sometimes I feel like I get in my head space with my own parents and I think, what's my goal? What do I feel like is lacking? Do I think someone else has something I don't have with my parents? I just think our expectations are really high. I read the best phrase the other day, it was an email the newsletter writer was quoting Neil Strauss, and he said, "Unspoken expectations or premeditated resentments." And I thought, I think that describes every parent-child relationship in the history of man.

[00:20:32] And so, you know, some of it, I think, is just easing up on ourselves and our parents. Of course, living with your parent is going to be hard. Of course, having a parent who is not on the same emotional journey as you is going to be hard. Because guess what? That's every parent. That's every parent is going to be in a different space than we are. And I don't know if it's like in our culture, in our pop culture, in our fiction and our movies that we got this vision of parent-child relationships that are full of ease and peace. But that's just not been my experience. It's an intense relationship. It's going to contain intense interactions and intense feelings. I worry about that all the time with my own kids because I'm an intense person and I'm an intense mother, and I think how is it going to play out? Are they going to run from me? I worry about it all the time, because I just think this relationship holds so much. And that's if you live in different places, much less the same house.

Beth [00:21:36] What I admire in my own parents is that they have in a really graceful way transitioned from me being a reflection of them to me being a full person on my own, where I can make my own decisions and choices in life without those serving as representations of some critique of them or validation of them, or celebration of them. They understand that they are a part of me and I am a part of them, but that we are separate entities. And I feel like we have really found a space of like mutual respect and admiration, but also this is your life and you have to make your path, and you have to handle this in a way that you feel good about. You have to make decisions. And it flows both ways, right? Because there are certainly things like I would love for my parents to move here and be with us. And I can present a very compelling pitch as to why I think that would do best for them, but I have to respect what they want for themselves and their lives and their goals. So, it flows in both directions.

[00:22:47] But I think my mom and dad have been very, very skilled at coming to that place. And sometimes I wonder if that's because they had me and my sister 12 years apart. So, they have been through a big cycle twice. And I think you must learn a little differently when you go through the cycle separately like that, instead of having all your kids together. But it's really helped in our relationship, and I think it would be very different if they came to live with me now than it might have been 10 years ago because of how much we have all grown into this new family dynamic. And that just doesn't happen for everybody. And I can picture situations where having a parent under your roof who has not come to see you as something other than just a projection of them would be fraught in absolutely every way.

Sarah [00:23:46] Well, caregiving makes that entire energy flow, I would argue, almost impossible. I can't let you be your own person when your decisions affect my life. That's really difficult. When I'm saying I want to respect your independence and boundaries, but the medical decisions you make affects my life, that's really hard. And, honestly, I don't think we have good language about that. I haven't read a psychologist or a therapist or a book where I feel like they really crack this balance between being a family and being an individual. Truly, I haven't read it. Maybe it's out there, maybe y'all have read it; you can hand it over to me. Because I don't think we have a lot of great language or even tools to give people to say, this is what it means when a decision someone makes affects you. Even in a marriage I think it's really hard to say, like, well, you're your own person and I can't control you.

[00:24:45] But also, if you make this choice, I'm going to be in a position to be having to what? Take time off to take care of you. That's impossibly hard. And I don't really know that we've figured out a way to talk about it or acknowledge it. And I think that's why when we say the word caregiving, because you're giving that care, it can feel so heavy and it feels so intense, and it can strip you bare because you feel at the mercy of someone else's choices. You feel hostage to someone else's choices. I feel that with Felix, and he's nine years old and he has a pretty manageable condition. And it can build such resentment because you just feel like I'm the one getting up in the middle of the night, I'm the one stressing, and you can't just wait five minutes to eat the popsicle? It's really hard. And that's just like such a tiny piece of what can be contained inside these caregiving relationships.

Beth [00:25:40] And yet, it is always true that other people's choices rebound on us. Always. Where a person lives absolutely has a rebound effect. Part of the reason that I always try to pitch to my mom and dad why don't you come closer is because my parents do have medical emergencies. And that sort of ever present "Am I going to need to drop everything and drive for hours today?" is out there. And so, finding that place where we say I love you enough to tolerate that rebound effect and to still respect your independence in your decisions and what matters to you and to not just tolerate it and respect it, but to celebrate it with you because your happiness means something to me, it is really challenging.

[00:26:28] Music Interlude.

[00:26:39] We're going to wrap up today with Kelli, who has written about her journey over the past year, which it's been a very hard journey. It's been a lot of life compressed into a short period of time with a ton of the dynamics we've been talking about. Decision making, the fatigue of having to navigate the really mundane parts of caregiving all the way through the emotionally arresting parts. And Kelli has written about this beautifully, and we wanted you to hear it in Kelli's voice. So, she generously recorded this for us, and we're going to share it with you now.

Kelli [00:27:17] A commemoration for the impossible. I didn't see it coming. Not now. Not like this. Commemoration for I didn't know I had it in me. I still don't know how I did. A commemoration for surviving being launched out of my life and on to another planet. Commemoration for if you had told me, I would have had to do any. And only one of the things I have done in the last few months, I would have deemed it insurmountable. A commemoration for the midnight call from my brother and his crying and saying dad was not doing well. A commemoration for the 5 a.m. call from the E.R. doctor and the words end of life event. A commemoration for making the 74-mile drive in my car, a drive that now gives me panic attacks knowing I had to tell my mom and brother that dad was not going to make it. A terrible kitchen conversation. A rush to the hospital. A miracle when the priest who everyone said had the flu, showed up in time to give last rites.

[00:28:35] An out of body experience, telling my dad we loved him. We would take care of each other. We were a good team. And it was okay for him to go. At 12:15 p.m., last breath. A blur of hospice workers and funeral home staff and family and friends. One hundred and fifty five phone calls in 10 days. Planning my dad's funeral. Writing his obituary. Writing the funeral program. Homework I never wanted. Never understood what's happening behind the scenes. Revealed dementia diagnosis for my mum, an understanding she truly couldn't take care of herself. A 24/7 caretaking journey began. A backpack full of documents, notes, accounts, phone numbers, Social Security numbers, formal declarations that I am in charge, that I lug everywhere fearful of losing some important scrap. Weighed down by the literal and physical weight of the death business.

[00:29:54] An anger at the amount of times I had to enunciate to robot insulin systems dead member, death claim, report of death. The inhumanity of over and over and over having to say I need to cancel this because my dad is dead. A commemoration to my brother rising up to help me. Forged in the fire of this shit show, a strong adult friendship and teamwork is fused. A commemoration to my mom, dementia progressing and mourning the loss of her beloved husband of nearly 52 years, her confusion, her grief, and the turning of the tables as she needed to be cared for. The commemoration to mothering my mum, feeding her, helping her shower, comforting her, cleaning up her bodily fluids, caring for her when she got a cold and the flu, and tucking her in at night.

[00:30:57] Commemoration for becoming my mom's power of attorney. Commemoration for the immense responsibility I now have for her career and her life. A commemoration to choosing somewhere for my mom to live and receive care, knowing this will likely be the last home she ever has. A commemoration for the next impossible task somehow being completed. A last day in our family's home. A drive filled with tears. A new home for mom in memory care. A commemoration to tears, anger, confusion, guilt, feeling like we were going to throw up. A commemoration to the Tums my brother had in his duffle bag. A commemoration to hating the decision that you know was the right one. A commemoration for being three people at once in the fog of grief. Executing my dad's estate, serving as POA and caregiver for my mom, and trying to somehow keep a fingertip of a grasp on my own life that seemed so very, very far away. A commemoration to the one pair of shoes had with me for months, and the black flats I had to buy for the funeral, to the laundry baskets I lived out of on the floor of my childhood bedroom.

[00:32:24] A commemoration to my best friend who came the day before the funeral and cleaned the bathroom of my parents’ house and ran errands and made me supper, and was the Uber for my uncle and bought my mom new underwear and bought me black socks to wear the funeral, and sat with my mom while I did the funeral homework. A commemoration for searching for a new home and preparing and packing for my own move in the midst of all of this. A gentle laugh at my naivete in January when I thought moving this year was going to be so hard and it was almost the only task on my plate. A commemoration to all the people along the way who have showed kindness and empathy. A commemoration to those who shared their journeys with the death of a parent. The challenges of a loved one with dementia. I didn't know. I didn't understand. I had no idea. I'm new to this planet. A commemoration to my dad who trusted me to handle all of this, who loved me and taught me and showed by tremendous example how to care for those you love. And still a commemoration to wishing we would've talked more about all of this. A commemoration to me. I am tired. I am sad. I am forever changed. I'm so fucking proud of myself.

Beth [00:34:11] Thank you to Kelli and Mary Kate and our listener whose mom is living with her, and for all of you listening and contributing your stories as we think about the many, many facets of living a nuanced life. We'll be back in your ears on Tuesday. Until then, have the best weekend available to you.

[00:34:29] Music Interlude.

Sarah: Pantsuit Politics is produced by Studio D Podcast Production.

Beth: Alise Napp is our Managing Director. Maggie Penton is our Director of Community Engagement.

Sarah: Xander Singh is the composer of our theme music with inspiration from original work by Dante Lima.

Beth: Our show is listener-supported. Special thanks to our executive producers.

Executive Producers: Martha Bronitsky. Ali Edwards. Janice Elliott. Sarah Greenup. Julie Haller. Tiffany Hasler. Emily Holladay. Katie Johnson. Emily Helen Olson. Barry Kaufman. Katherine Vollmer. Laurie LaDow. Lily McClure. Linda Daniel. The Pentons. Tracey Puthoff. Sarah Ralph. Jeremy Sequoia. Katie Stigers. Karin True. Onica Ulveling. Nick and Alysa Villeli. Amy Whited. Lee Chaix McDonough. Morgan McHugh. Jen Ross. Sabrina Drago. Becca Dorval. Christina Quartararo. Shannon Frawley. Jessica Whitehead. Samantha Chalmers. Crystal Kemp. Megan Hart. The Lebo Family. The Adair Family. Genny Francis. Leighanna Pillgram-Larsen. The Munene Family.

Sarah: Jeff Davis. Melinda Johnston. Michelle Wood. Nichole Berklas. Paula Bremer and Tim Miller.