For All the Caregivers - Transcript
This is a transcript of a “Terrible, Thanks for Asking” episode entitled “For All the Caregivers.” The text may not be in its final form and may be updated or revised in the future for accuracy.
Listen to the episode here.
Hope: I think people tell me a lot to, like, take care of myself and do self-care. And that's awesome. And like, thank you for that. But like, a bubble bath is not going to, like, make sure that we get our chemo. I'm the only one who can do that.
Wilton: Hi, my name's Wilton Burns, I'm 28 years old, and I'm already crying, so that's a great sign.
Carissa: I guess you could say I’m a caregiver. My son is 12, and he has special needs. He was born with a brain abnormality, and I guess you could say that… [to her child] hold on, buddy. Oh, my goodness. I've been his... OK, apologies for the interruption. That was... I have three kids, and of course they all need me at this moment. Anyway, so...
I’m Nora McInerny, and this is “Terrible, Thanks for Asking.”
For the last few episodes, we’ve been focusing our conversations about care. We’ve talked about end-of life care. We’ve talked about the work it takes to keep the home going… the care work that makes the rest of our work possible.
We’ve covered all these different angles, and there is still SO MUCH MORE to say. Because everybody’s experience with caregiving is different. There’s also so much in these experiences that is universal, that is just what it means to be human.
And I know that we could absolutely do 100, 200, a million episodes on topics like this and never tell the same story twice. But for this episode, we asked for your stories. We asked for your voices. From all the caregivers in our audience, we asked you to send us voice memories about your experiences. The good. The bad. All of it.
We don’t all have the same 24 hours in a day. That is coming from a person who absolutely perpetuated that meme that said, “You have as many hours in a day as Beyonce.” You do not. No, no, no, no no no. You don’t even have as many hours in a day as Nora McInerny, because I have a husband who does everything for me.
So many of us have SO many claims on our time. There is no such thing as extra time. Especially in a pandemic. When this pandemic first started, I was seeing all this stuff on Instagram saying, “What are you going to do with all this extra time? Don’t you want to come out of this a better person with ripped abs and a finished screenplay and a whole new you?”
And um… my question is, what extra time? There’s no extra time. Just because some people are no longer commuting or no longer taking their kids to sports practice… our time was always overclaimed, overpacked. We were always trying to fit 36 hours into a 24-hour day. There’s no more time. And what we’ve seen is this pressure to behave as if there is, when in reality, certain aspects of our lives at home, those certain stresses, have expanded and taken up the room they’ve always needed. We don’t have more time.
So in this era of isolation, this era of a pandemic when even hard things — which have always been hard — are compounded by the distance between us, by our loneliness, we wanted to hear… what does it look like to be a caregiver now? What does your day look like?
Von: What's an average day like for you caretaking on a typical day? Do you feel like you have things under control? Well, I'm going to answer the second question first. Do I have things under control? Never! Never, ever, ever! It's like I'm on this constant roller coaster of ups and downs. Just when I think I've got it under control, the rug gets pulled out from underneath me.
Emily: So what is an average day like? My kids are early birds. And for the record, I hard roll my eyes that anyone who says their kids are early birds and then proceeds to tell me that their little angels wake up at 7 a.m. Shut up. Try waking up every single day at 5 a.m. for six years to just energetic, screaming, demanding kids. I don't know why I was blessed with early birds, but here we are.
It’s not as if the universe looks at us and is like, “Okay! Looks like you have your hands full. I’ll move on to somebody else.” Quite often, the terrible things just keep happening. They just keep piling up. And for so many of us, we aren’t just caregiving in a traditional sense. We’re caring for the people in our lives in different ways. We’re blurring the lines of our relationships between being a caregiver and being a mother, being a daughter, being a sister, being a wife, being a husband. I don’t know why I said all female roles except that we got a lot of women’s voices in here.
Betsy: I am a caregiver to my son Boden. He is 8 years old and has acute lymphoblastic leukemia. I think one of the interesting things about being a caregiver to your own son or child is it's hard to distinguish what is just being a mom from what is being a caretaker. I end up spending a lot of thought cycles and kind of emotional energy taking care of him in a way that is different than the way I take care of my other children. I then have to work through and process the guilt of that discrepancy, knowing both that Boden has kind of a different story or a different journey than the other kids that I have, but also that I'm all of their moms. And so how do you kind of identify the difference between where caregiving stops and where mothering takes back up?
When I was reading through your questions, when you said, “When do you care give?” or “What does a normal day of caregiving look like?” I kind of laughed because I thought, man, I think from the moment I opened my eyes to the moment I close them, I'm caregiving. Once pediatric cancer has kind of rocked your world, I'm not sure there's really a space outside of it. I'm thinking about things like, why is he not hungry for breakfast? Why is he craving meat? Why does he not want to wear a jacket? Is it because of a side effect of the chemotherapy? Why is he sitting on the outside? You know, when I pick him up from school, why is he sitting on the outside of the soccer game? Is it because his legs hurt? Is it because of the neuropathy? Whenever he has trouble with his homework, is it a side effect from the chemotherapy? Is it affecting his cognitive function, or is it just him being 8? I think when your role as a caregiver is so interwoven with your role as another relation — like for me, his mother — it's just hard to kind of tease out what part is caregiving and what part is just living with a person with cancer.
Franzi: The average day for me really changed a lot during the various stages of my mom's illness. She had end stage breast cancer. And in the beginning, when the cancer first came back, it caused a lot of fluid to build up around her lung and then her lung to collapse. So at that point, we really didn't know that it was her cancer that was back, and we were dealing with a medical emergency. So my mom had to undergo invasive tests and surgery. And there were just days with a lot of uncertainty about the diagnosis and the prognosis. And I was traveling back and forth from Durham to Charlotte while also taking care of my own family here in Durham and working full time.
So once we knew the diagnosis and, you know, she was coming home from the hospital, there were just, like, a lot of logistics. We had to focus a lot on logistics, things like learning how to drain her lung at home, you know, getting her oral chemo drugs. And I was on the phone, it seemed like all day long, calling pharmacies and the insurance company and Medicare and setting up her follow-up visits and so forth. And, you know, all of that while really trying to be there emotionally for my mom and dad. We were just all in shock.
So that on its own is a lot. And like all the best infomercials, I have to say, “But wait, there’s more!”
Franzi: The relative calm part, though, was kind of short lived for me personally, because it was also during this time that shockingly I received a breast cancer diagnosis, and it was the exact same cancer as my mom's and almost the exact same location as hers. That was a lot to take in. I remember the horrible day when I had to call my parents and tell them this news. Really, it was just unbelievable. And that was the worst, I think, having to tell my mom in particular, and worse still was telling my teenage son and my husband that now I had the same cancer. And, you know, my son was old enough to be really aware that his grandmama was going to die from this cancer, and he had a lot of fear for me. And I had a lot of anger. I was so just pissed that I now also had this cancer. And, you know, I kind of use that anger to sort of propel me through treatment.
What are some of the hardest moments that come from caretaking? Well, there were many, and two things really stick out. I think first, watching my mom refuse treatment for symptoms that could have been alleviated pretty easily. For her, that was unremitting pain and also nausea. And then secondly, you know, disagreeing with her about the value of hospice. Towards the very end, when she was too impaired to make decisions, we did get hospice, and she was just aware enough to realize that we were moving her into a hospice bed and had removed her own bed. And she kind of woke up and stared up at the hospice nurse who came to do the admission. And in sort of a rare moment of lucid clarity, she said, “Are you here to take me away?” And that just about broke my heart.
More than one thing can be true at once. We know that it is an honor to take care of people we love. We know that it is a privilege to be able to do so. And that can coexist with grief.
Kari: So over a year and a half ago my daughter was born. She was life flighted to the local children's hospital upon birth. She was diagnosed clinically with CHARGE syndrome within months after her birth. She has a lifelong disability of deaf-blindness, so she's deaf and blind, both profoundly. She has a tracheostomy. She has a G tube. She has a long list of medical complexities, and she's one hell of a badass. I love her to pieces. Within five months after that, September of 2019, my mom and ultimate best friend in this life passed away unexpectedly. So we had already been through one round of trauma and then hit another round of trauma. The pandemic hit in March. My husband and I both had been working through mental health struggles since my mom passed and after the birth of Sloan, and my husband passed away by suicide on June 2nd of 2020. So it really took the pandemic and my life to a next level. So I've lost my husband, who is my best friend of 13 years, my mom, who was my best friend of like 30 because, you know, she birthed me. And then Sloan, who is my best friend of a year and a half, she's still sticking around. She hasn't gone anywhere, but she requires a lot of care.
And all relationships are complicated. Even relationships with a person that you’re responsible for. A person that you’re caring for.
Meghan: I'm a single mom. And my 19-year-old daughter was born with neonatal abstinence syndrome, because I was on methadone at the time that I got pregnant. I'm in long-term recovery now, but I had a long battle with substance use disorder, and so she was born with neonatal abstinence syndrome and, you know, she was in the hospital for seven weeks and her early years were really, really tough with that. And then I actually lost custody of her from 4 to 10. But when I got her back at 10, she had really bad anxiety that was undiagnosed. But I recognized it, because I have it.
And so that was a struggle right from the get go of trying to reunite with this 10-year-old that I didn't really know. I didn't really know how to take care of children. And she had this wicked bad anxiety and so did I. And then when she was 13, she was diagnosed with something called Ehlers-Danlos Syndrome, type three, which is a collagen disorder, and her body doesn't make collagen the right way. It causes all of these crazy, random symptoms. It's a little bit like M.S. So on any given day, you could wake up and just have some kind of random affliction, like a neck sprain or migraines for a year.
The shifting of these roles between who is giving care and who is receiving it, can shift and change your relationships with this person. And sometimes that’s for the better.
Joanna: I will say, though, that one funny thing about being thrown into this caregiver situation abruptly is that, you know, my mom and I had a good relationship. We still had a lot of, you know, stuff and crap. And when this happened, all my anger and all my pent up and built up... I don't know, emotions and resentments, they all just kind of floated away, because now we were in these roles, and I saw my mom in a new way. And I really believe that that is why she survived, was so I could forgive her.
And sometimes… it’s not.
Larry: My 82-year-old mother was dying of emphysema. I was caring for her because I lost my job, so I had the time. Every time she wanted a cigarette, I would turn off the oxygen machine, light one up, put it in between her lips. Felt like the fucking executioner every time. I didn't have a good relationship with my mother towards the end of her life, but I came back into it and was now her caregiver. One night she looked over at me sitting next to her bed and said, “Larry, I think you need to clean me up.” As I changed your diaper, wiped the shit off of her, we just kept looking at each other, into our eyes. And when I was done, I walked outside into the alley behind the house and I just screamed.
None of this is easy. Even when it looks easy. Even on good days. And so many of us, we take on these roles willingly. So many of us, we are just pushed into them because there is no other choice. So we asked the question…
Von: Do you ever wish you didn't have to be a caretaker? This is probably the easiest question I will ever have to answer. Yep!
Stephanie: Do I wish I didn't have to be a caretaker? I wish every day I didn't have to be a caretaker. I... want my life back. And it's so hard, and I feel so guilty, because she’s just constantly so thankful. She tells everybody how wonderful I am, and I feel like the biggest shithead because I don't want to be doing it. And every day I just think about how I don't want to be doing it. And I'm only three months into it, which makes it even harder.
I didn't have a choice. It was just, I was it. My sister died five years ago and her husband died a year ago. And so I'm kind of it. And there's really nothing I can do about it. No one ever asked if I was even capable of doing this. They didn't ask if I wanted to do it. Am I mentally stable enough to do this? There was nothing. It was just, you know... they didn't ask if the house was going to be able to, you know, be able to have a wheelchair. There was nothing. Basically, what I was told over and over is that she had 21 days that Medicare would pay for the rehab and then that was it. She needed to go home. That's really all it came down to, was money and the time limit she had and then she had to be here.
We’re gonna take a quick break.
We’re back. And this week, we’re continuing our series on care. We’re talking about your stories. I want to take a minute here and just say that knowing so many of us, so many of our listeners, are carrying so much, are giving so much of themselves… if everyone listening can just take a collective breath in and breath out and roll your shoulders back. Do what my dad said, “put them in your pockets,” roll your neck. Think about all of the things that are on your plate right now. I am amazed by you. I am in awe of you. I appreciate so much the emotional and physical and mental workload that you’re carrying. And I know, because we’ve heard it over and over, that this pandemic has made already difficult situations even more difficult. Because yes, we realize we’re all in this pandemic, we’re all in this together, and yet for so many of us, we’re still being expected to carry on as if things are just a regular flavor of bad instead of the extra… you know when Doritos does like WITH EXTRA FLAVOR! I feel like this pandemic is like LIFE! WITH EXTRA... BAD FLAVOR! You know what I mean, where it’s like, “There’s extra Cheeto dust on these Cheetos.” And it’s like that’s what this past 14 months is basically like. LIFE, NOW WITH AN EXTRA KICK TO THE CROTCH!
We’ve somehow been convinced that being at home all the time should mean that we have more time to be productive. I hate the term “productive,” can we just… somehow slow down our love affair with productivity and getting things done? And starting hobbies? And getting into killer routines that max out your life?
I cannot say it enough: For many people, this pandemic has been about survival. For some of us, we’re just trying to keep our jobs. For some of us, we’re just trying to get used to what it means to stay at home all the time, work from home. But for a lot of us, people like Emily, who you’re about to hear from, some of us have already been here.
Emily: And when I had my oldest, I had convinced my company to let me work remotely. And I thought I hit the jackpot. I was like, “Yeah, I'll totally go back to work three weeks postpartum. I'll be more effective than ever. I won't have to commute. I'll get to watch my baby grow, like, this is the best. I'm so excited.” And so by doing that I kind of made this caregiving job a lot harder, because I just didn't understand the deal with the devil I was making. I gave up traditional work hours because the calls and emails were constant. I gave up dedicated work time because babies don't care about work and meetings. There's a quote that I'll go ahead and butcher for you that says something like, “Women are expected to work like they don't have children, or raise children like they don't work,” which is basically the epitome of this pandemic, right?
Some people started their caregiving role during the pandemic.
Stephanie: Taking care of her since the pandemic? It started in October of 2020. It was really hard, because she was in a rehabilitation center after they amputated her leg, and I couldn't go in there, so they tried to just train me through a window like how to help her up. And I basically had a meltdown.
And for others, this pandemic has completely changed the way that they’re used to caretaking.
Allison: This is really different from every other situation in the last 10 years when I am always there by his side for every ER visit, hospital visit, procedure, appointment, everything. And so to drop him off at the emergency room and drive away... there just really aren't words to describe what that feels like. I am used to being there as his advocate, as a person who knows his medical history inside out and so can help the team with that by filling in the gaps as a person who knows him so well that as I'm watching, I can see things before the team who doesn't know him as well do. I'm there for emotional support. I mean, all those pieces that go with me when I drive away from that emergency room. And that has happened twice now to us during this pandemic.
It’s forced a lot of difficult decisions. When you’re living with someone who is more at risk for COVID-19, you can’t afford to take any chances.
Allison: The other piece is just that we've had to make some really hard decisions as a family. We have a daughter who is 14, who started high school this year, and her school has been mostly in person. And we just made the hard decision that it wasn't going to be safe enough for him. And so we had to pull her out of that school and enroll her in an entirely online school and are constantly making decisions about what she as a teenager can do that will keep him safe and that will also keep her, you know, in a mentally safe and positive place.
This pandemic is changing the ways that we can live our lives and highlighting that losing those small things doesn’t always feel like a small thing.
Hope: And then with the pandemic, it's even harder, because here I am this, you know, young woman, and my dad is 60. And I am now having to tell him, you know, “We can't go eat, we can't go do the things that you love about life that make the time you have left fun and happy and enjoyable,” because the name of the game has been keeping him alive. And now there's this deadly virus that is threatening to, you know, take out people with weak immune systems, and that's him. And so going to dinner, going to the grocery store, going out to concerts and parks and movies, the stuff that he really enjoyed, he’s unable to do anymore. And I have to be the one to, like, enforce that. It's the switching of roles of… I'm sorry... the switching of roles of now I'm having to be like the one to tell him what to do. You know, like, that's my dad.
And when you live at this high level of stress and concern for the person you’re caring for, it is excruciating to see other people not giving that same care and consideration to the people around us.
Kari: It has been really, really scary to be a parent to Sloan in an environment that seems like people just don't quite care about the Sloans of the world. And I sit back and watch just so many people from real places of privilege being able to go out and party without a care in the world. And then there's little Sloan here with full trust in her environment and her family and people around her to create a world that, you know, supports her. And there are a lot of people that aren't doing that and aren't following science. And it's really hard to watch. She has a long list of home care supplies. And it has been so scary because those supplies, you know, could dwindle in terms of oxygen and things that emergency rooms are running out of. Sloan could require those things just in her daily life. We have oxygen at home. We don't have to use it right now. We have a compressor, and we're always at the ready. But these are things that if someone were to catch RSV? RSV for her is life threatening in big ways, more than your average child or infant. And so it's really scary to see these supplies lessening in a world where our home already looks like somewhat of a hospital setting. And we know that, you know, these supplies are getting fewer and farther between.
We’ll be right back.
There’s so much that could be said about caregiving. And we will work on episodes about this, I promise. Because everyone’s experience with it is different. We asked our caregivers in the TTFA family, “What do you wish people understood? What do you need people to understand about caregiving, about your situation in general?” And this is where all of us who are not currently in a caregiving role should really listen up.
Hope: I think people tell me a lot to, like, take care of myself and do self care. And that's awesome. And like, thank you for that. But like, a bubble bath is not going to, like, make sure that we get our chemo. I'm the only one who can do that.
Franzi: You know, we might assume that they're going to get home health services or a home health aide or hospice care. But some families or patients can't afford it, or they just don't want it. And we need to find a way to make that OK, too.
Secondly, you know, patient and family preference are so important, like it's a central tenet, really, of high-quality health care. And my mom valued autonomy more than anything else. You know, she told us over and over she didn't want outsiders in our home. And though I have worked for so many years on national health policy about access to high-quality hospice care, I had to make peace with the fact that my mom did not want hospice, and nothing I could say was going to change her mind.
We should probably name this final stage of grief. And it's not acceptance. I recently heard an interview with David Kessler and now this final stage is called “The Finding Meaning Stage.” And I definitely think I'm in this stage and I suspect and I hope, actually, that I'll be in it for a long time.
Allison: What I wish people understood about my situation or about caregiving in general is that I wish that they could see and understand that everything that has happened to him has also happened to me. That every diagnosis and appointment and procedure that I have been present for, and I have been traumatized by. And there have been 10 years of those stacking on top of each other. But that in addition to that, I was also expected to continue working, to continue parenting, to providing all of the care for the family, all of the communication to others about what's going on, and then to be thrown into a role of being a nurse, and a social worker, and a therapist, and an insurance expert, and a coordinator, and a pharmacist, and all of these things… that all of those things were added onto my shoulders while, and in addition, to me being traumatized by all of these years of medical emergencies that have happened.
Von: I wish that caregiving for the senior population in this country was different. I feel like seniors, they just get disregarded, tossed to the side, forgotten about, put away in senior homes and never, never being visited or never being thought of. And it really is very frustrating. I've seen it in my parents’ apartment building. I see it where I work. I hear about it all the time. And it's just heartbreaking that in this country our elderly, or aged, or seniors are just disregarded. And whereas in other cultures, our aging population is revered and put on a pedestal and admired and honored. And that's just my general statement, that I wish people understood that our seniors are truly, truly meant to be honored, and their advice is important, and learning from them, and learning manners. And it's just, it's beyond important.
Betsy: Another thing that I think is hard for people who are not caregivers to understand is that there is never a time when my mind is not at least partially considering Boden and my caregiving to him. I feel like, you know, his treatments will be spread out over the course of weeks or potentially months. Right now, we're waiting for, you know, insurance paperwork to move through so we can move on to a different study. And when there's breaks in the treatment, I think people kind of think or assume that there's breaks in the caregiving. And I think actually during those breaks or downtime, the caregiving, while it does decrease like the physical caregiving that we're giving every giving to him every day, I think that the emotional load of being a caregiver is almost harder in those moments. Like in the quiet, calm, in between treatments, waiting on insurance moments. I think that's actually when it's hardest to be a caregiver, because you have the time to actually think about how hard it all is.
Emily: I wish people would stop making it sound so heroic. I think the heroism factor propels caregivers to push harder, to give more and wear their depletion like a badge of honor. Aside from that, the biggest shock to me in becoming a parent actually had nothing to do with, you know, being sleep deprived or navigating discipline or even giving up a lot of that me time. I often say the hardest thing about being a caregiver or just a parent in general is this idea of reliving childhood trauma all over again, which I didn't even know was the thing. So the new buzzword around it, I just learned on Instagram, is called re-parenting, which is basically the act of giving yourself what you didn't have as a child. And this seems really common, I feel like, particularly people before they become parents, right? People will say, “When I'm a parent, I'm never going to yell at my kids. My dad was a yeller and I'm not going to be that way.” And so kind of the problem with this is now, well, OK, so if your dad was a yeller, but that's all you knew. And so now you're triggered, right, by your kids. They're not listening. They're not cooperating. They're talking back. Your natural instinct is going to be to yell. And if you're suppressing that, now you're just experiencing kind of this level of anxiety because you don't know how to necessarily regulate that feeling or emotion. And so I just feel like hearing so much about my kid's mental health and being so hyper vigilant and that sort of repeat some of my parent's mistakes or some of my own childhood trauma is really quite the balancing act when most days my basic needs aren't even met. And it's just truly one of the hardest parts that I just think nobody really talks about.
Meghan: What I wish people understood about caregiving or just like struggles, period, is that I'm not brave, I'm not strong, I'm not… any friggin thing. I'm just me, and I didn’t choose any of these things, and just the fact that I get through a day... doesn’t make me special. It just makes me a human being with a will to survive. My perspective of like I almost died so many times and I lived on the street for years and I was in and out of jails and institutions and I had lost all hope many, many, many times over. Um. I have an incredible, beautiful, incredibly blessed life, and Sophie and I, you know, when the pandemic hit, we're just like, really? And then like our dog died and we just always seem to have something, but at the same time, we also have… we have a saying and it's called, “It's the new OK.” So when something terrible happens or something is hard and we're like, “It's all right, it's the new OK, this is what OK looks like now.”
This is what it looks like now. Hopefully not what it looks like forever but this is now. You have a valid perspective. What you are carrying is just as heavy as you think it is. And for everyone out there who is responsible for taking care of another person, you are doing such a good job at such an impossible thing.
You are not failing. If you are struggling, that is not a sign of failure, that is a sign that you are a person. You are a person doing something extremely difficult in a tough world, in a really just crap time in history. And from myself, from everybody at “Terrible, Thanks for Asking,” and from everybody listening, we appreciate you so, so much.
I’m Nora McInerny, and this has been “Terrible, Thanks for Asking.” Our production team is myself, Hannah Meacock-Ross, Marcel Malekebu, Jeyca Maldonado-Medina, Jordan Turgeon and Phyllis Fletcher. We are a production of American Public Media and… what else do you need to know about us? Our theme music is by Geoffrey Lamar Wilson.
We are a production of American PUBLIC Media. Public media means that we are supported by listeners like you. Listeners like Alexa Lee, who donated because she likes our podcast and because the ads sucked her in. Thank you, Alexa.
Listeners like Chelsea Deets, who said that we at TTFA have helped her walk through an incredibly dark and challenging period of her life. Chelsea, I am so sorry for what you went through. We are so happy to be here in the dark and painful parts of life and to help each other.
Listeners like Beth Jewel, who lost her father to suicide many years ago. I am so sorry about your dad, Beth. I am so glad that you find some comfort in the work that we do.
And listeners like Jamie Zimmerman, who is also a widow — Hot Young Widows Club! — and a mom to two little dudes.
Thank you so much for everybody who helps make this podcast possible. We appreciate you. If you want to support our show, you can make a donation at TTFA.org. If you can’t... honestly, this is terrible salesmanship, but just know that there’s a lot of ways to support a podcast, and listening is one of them. It really is. If you buy things from our sponsors, that helps! If you share our podcast with somebody, that helps! If you leave a review and a rating in Apple Podcasts, that helps! There’s so many ways to help, but Alexa, Chelsea, Beth and Jamie, I just wanted to thank you for your support.
And um… and that’s all. That’s all I got. That’s all I got right now, guys. We will be back next week.
This was recorded in McInerny Studios. It is a closet in Phoenix, Arizona. Um… Marcel, anything else? Anything else you wanna add to the credits? Okay. Well. Thanks, guys. And honestly, I know so many of you are going through so, so much. It is a heck of a world right now. Take care of yourselves, do a C+ job at work, at home, at being a friend and just… try to stay alive. That’s your only goal. Okay? I truly adore you and I’m glad that you're all here.