Last Day Presents: “Caring For Her Kid, Her Parents and Herself” (Squeezed Ep 5)

[MUSIC PLAYING] Lemonada. Almost 3,000 people were killed in the 9/11 terrorist attacks. How did some of their remains end up in the world's largest landfill? They treated my son like garbage. So while the people who killed my son, I have certainly an animosity for them. I have a huge animosity for the people who were running New York. On the latest episode of Revisionist History, the story of a battle over what some see as a pile of dust and other see as the remains of the dead. Listen to Revisionist History wherever you get your podcasts. Oh, yes. I'm out. That's it? It's pop up. Let's go. It's because of the wire. Let's post a little card. The game is over when one person is still alive. That's a little carnage. Oh, another exploding kitten. Oh, yeah. Do you have a diffuse card? Let's go, let's go, let's go, go. That's Shade. A 34-year-old living in New Jersey and working remotely in caregiving advocacy, she's a mom to a five-year-old and cares for her parents who live nearby. Together, they're playing a game called Exploding Kittens and things are getting heated. You just drew exploding kittens? Oh, I thought I was giving it to you. What do you mean? It's all games, isn't it? Every Saturday night, Shade, her husband and their daughter gather around her parents' dining room table to play games and listen to records from her dad's extensive collection. I'm talking Sam Cook, Otis Redding, or one of the most town heavy hitters like the Supremes. It's all to the future. OK. It's like that boy at the top. Let's dance. It's like that boy right at the top. Yeah. Don't have a fairer. Don't have a fairer. I don't have a fairer. So I lose my turn. That's it. But not every family visit is as joyful as this. At least twice a week, Shade visits her parents, Celia, 73, and Marvin, 81, to make sure they're taking the right medications at the right time. Celia, for her heart condition, and Marvin for his prostate cancer. Only after that, does Shade think about taking her own medication for rheumatoid arthritis? It is partially in my nature to be a problem solver. And part of me is like, well, if I don't do it, then who else will? We don't live in a country where we have the sustainable, equitable, affordable options that would allow me to not be that person. If you've been following squeezed up to this point, you already know that Shade's experience isn't uncommon among caregivers in America. Speaking for all caregivers everywhere, I can tell you that we'd love to have more carefree moments like game night, or really any time with family that isn't spent running through checklists of medications to take, doctors to visit, or bills to pay. Sometimes so much of my identity gets wrapped up in being a caregiver. Sometimes it's just nice to sit around the table and play board games and have fun and think about moments that are funny and make us laugh through those pockets of relief almost. For Shade, a number of complicating factors and unexpected light changes have made these moments even more fleeting. And without the right systems in place to care for the caregiver, people like her aren't given a fair start to begin with. This is Squeezed, and I'm your host, Yvette Nicole Brown. At episode 5, meet Shade. Shade is a black Latina who grew up speaking Spanish with her mom, Celia, a native of Puerto Rico. They always greet each other with a "besito" or little kiss. It's a warm Friday evening, and our team is with Shade at her parents' home in suburban New Jersey. Celia and Marvin's home sits on a corner lock with a well-manacured lawn and a couple of religious icons guarding the front door. Today was actually a pretty chill day. Our stairs broke. So we finally got the stairs almost fixed. The contractors came. I went to the dentist. I did a little bit of work in between. I'm not with my kid. Once the pharmacy came here, finished some grant reports. As I'm listing it, it doesn't sound chill, but it felt really chill to me. Like every Friday, Shade had barely returned her mom's besito before she was taking stock of what her parents needed, or what they needed to be reminded of. What time is it? What time is it? Oh, wait a minute. I know you didn't have to tell my mom that. From 10.30 a.m., Daddy. Darling, thank you. A lot of stuff has been going on today. I just need you now. Thank you, darling. Just work with me. In the kitchen, Celia and Marvin's medication machine sits on the counter, humming along, and spitting out the pills they need to be reminded to take. Nearby is a small whiteboard with memos like call T-Mobile and call Dr. Diamonds, scribbled on it in red dry erase marker. Did you pay your utilities? Gas and water? I got to take care of it. Oh, yeah, we don't want to go there, though. Good. I've been asking him to do that. Oh, that's a nice way to put it. We don't want to go there. Let it go. Decorating the walls of the house are framed passages from the Bible and images of lions and rolling hills painted by Celia. In the living room, a children's show called Bubba plays softly on the TV, keeping Shadei's daughter entertained. Every Friday, she spends the night at her abuela and abuelo's house. So Shadei and her husband in high school sweetheart, Jalil, can go on date night or hang out with friends. For the past two years, Jalil has been a full-time stay-at-home dad, packing lunches, doing laundry, and offering guidance on art projects. But when the couple first found out they were pregnant, that wasn't the life plan. Well, she was definitely a surprise. I did not find out until, oh, my goodness. I think I was-- it was right at the end of the first trimester. So the first thing was, oh, no. What do we do here? Shadei and Jalil had a lot to think about, space. They would need something bigger than their one bedroom apartment. Child care cost, how are they going to afford them? Jobs, Shadei had just started hers, and she was worried. I waited as long as I possibly could. I was like, I'm going to prove to them that I'm a great employee. I was really scared about losing my job. At the time, Shadei was working for a New York based company that had less than 50 employees, so they didn't have to legally honor the state's paid lead policy, which provides 12 weeks of paid time off job security and benefits. We ended up coming to an agreement where they did honor the paid leave. And they made it very clear that they didn't have to do this, almost like they were doing me a favor. And it felt terrible. And I felt stressed, and I had a really difficult birth. The doctor wanted me to recover for 12 weeks. And I said, I can't. I ended up doing like a six week recovery and the bills on top of that post pregnancy and during paid leave when not all of it was fully paid was a hard time for us. Tell me this, what did your math tell you about the cost of child care, like what was the most surprising and unexpected cost as you did your math? It's literally impossible. The actual cost of daycare versus what I was making versus what I needed to bring in to offset the cost. At one point, my husband and I were like, basically, his salary was just working to pay for the daycare. We were like, well, what if we get a nanny? Is it cheaper than if we do a part time? And then my mom does it, and the math just-- we could not make sense of it. So instead of hiring a nanny, Shade's parents moved to Jersey from Brooklyn to help raise their granddaughter. And at first, things were really working out. So my mom was super excited. And she was doing all the things. She was doing pickups and drop-offs. And she was staying with my daughter. And when I dropped her off one day, my mom had a heart attack with my daughter. Like, in her arms, I was supposed to be out the door. And I turned around, and she was having a heart attack. Over night, Shade went from being a making-it-work first-time parent to an all-hands-on-deck caregiver. And my family definitely showed up. My brother came. My aunts came. We kind of all just tried to figure out what the plan was. But the plan was me. I was the plan. It was, well, Shade will figure it out. Or, you know, Shade, the doctors are talking. We need you to come here. Or Shade, how are you going to track medication schedules? And they certainly were there. But the plan was me. I was the plan. That was the infrastructure. It seems like almost always. She's like, right there when things are happening. Right there. So it. You know, she's always in the right place at the right time, kind of thing. - Oh, you crying? - Because Shadee does so much. Sometimes I say slow down, it's okay, she's fine. You know, I know she's fine. That's it, I'm done. I'm done. Out of the blue, Shadee was dealt a nearly impossible hand, raising a newborn while having to process her mom's declining health and experiencing life as a mother while coming face to face with mortality. This meant adding anxiety, pressure, and responsibility to an already long list. But Shadee pulled through for her family because what choice did she have? Ask any family that's dealing with health issues or shifting care plans and chances are they will point to that one person who has all the answers, dates, and logistics in order. Usually, this falls on the most responsible family member, or the one who lives closest. Shadee checks all those boxes, and over the years, this has really strained her, logistically, emotionally, financially. More on that after the break. If there is one thing I am happy to invest in, it is getting a good night's sleep. I need it. And Quince makes it easy to bring a little everyday luxury into your nighttime routine, or maybe just find a thoughtful gift for someone on your list. I recently picked up the Bambo sheets from Quince, and I am just so impressed. They are incredibly smooth and comfortable, and honestly, getting into bed at the end of a long day has become something I'm looking forward to even more. It's such a simple upgrade, but it makes my whole bedtime routine feel a little more luxurious. Quince prices everything, 50-80% less than similar brands, by working directly with ethical factories and cutting out the middlemen, so you can give luxury quality without the luxury price take. Give the gift a quality this holiday season, download the Quince app for app-exclusive offers, or go to Quince.com. Get free shipping on your order and 365-day returns. Now available in Canada and the UK too. And when Quince asks where you heard about them, let them know it was last day. It's the best way to support the show. The drug landscape has changed, and most parents are working from information that's out of date. Fake prescription pills made with fentanyl and other dangerous chemicals are promoted on social media, pressed to look like Xanax or Adderall. THC vapes can hit 90%, nothing like the cannabis we remember. Cretum sits on the counter at the gas station, marketed as natural, and it can be habit-forming. You don't have to be an expert to start this conversation. Lead with facts, not fear, teens can tell when you're exaggerating and they tune out. Ask questions, listen, it's not one big talk, it's a series of small ones. And morning teens, what not to use? Doesn't teach them what to do instead. Helping them build healthy ways to handle pressure gives them better options. The new drug talk is free, science-backed, and made to help parents start these conversations. Visit thenewdrugtalk.org. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 13, 14, 13, 14, 13, 14, 13, 14, 13, 14, 13, 14, 14, 15, 16, 27. Those 27 alarms are everyday reminders for things like pick up your daughter from school or go to the pharmacy for your mix. One of them is a work one, one of them is a reminder. Like go get some coffee, you know? There's so many a week. There's so many, yeah, you know, my dress up is staying right now. Yeah, Shade is going to need that phone to stay organized and sane. Something you should know about Shade is that she loves a good system. So it makes sense that she spends a lot of time building budgets and Excel spreadsheets at work. And you guessed it, she's great at it. I do a lot of multitasking. I often think about the most effective route to solve something quickly. And I apply that to everything. I apply that to not just work, but balancing my time, balancing what we have to do in the home, like literally anything. Shade is the kind of person who prints out color-coded agendas for family trips and has zero unreads in her inbox. Teach me your ways, girl. If we're lucky, we have a person like Shade and our closest circle. They make luck easier for us by doing most of the planning. And we might even aspire to be more like them until we realize how many responsibilities they're shouldering. There are times where I am on a strategy team call with my parents in the car driving to the doctor. So I do a lot of like overlaps when possible. So, you know, where is the time? The time doesn't exist. I'm making up time. That's kind of it. Easily over 100 hours a month, spent on care. And that's just back of the envelope between doctors visits, groceries, prescription runs, things like that. There's a plaque on Shade's desk at home that perfectly summarizes her ability to get stuff done. It reads, "God is of efficiency." And even though Shade deserves it, I wish that she didn't have to embody it 24/7. Some people, myself included, are programmed to be all things to all people. We're either told to be this way by society or our families or we learn by example. Either way, we rise to the occasion because we don't want to let anybody down. Failure, in quotation marks, isn't an option. We'd feel too guilty. So giving ourselves a break is out of the question too. 'Cause it's like what Shade said earlier. If we don't get things done, who else will? So in 2019, Shade did what she had to do for her mom and daughter. And about a year later, the systems and routines started falling into place. But that was only temporary. And then my dad gets diagnosed with stage 4 prostate cancer. And then it was like, well, now what's the new regimen? What's the new treatment? In between all of this, my mother had another cancer reappearance. And it wasn't the first time that my mom had dealt with cancer. It wasn't the first time my dad had dealt with cancer. So it was almost like what we've been here before. So we know what this is like. We know the 10 new medications that are needed. I know all the side effects are like we can kind of come up with a new plan. But it's been very responsive and reactive instead of like a proactive plan. And part of that reactive plan meant tackling the new costs that came with these life changes, like hiring a part-time care worker for her parents. We spend 15,000 year on child care, maybe 24,000 for home care. That's not including groceries, prescriptions, the fact that like my mom needed a walker and then she needed a cane and my dad needed a walker, like all of those sort of things. I haven't sat down to count it because if I sit down to count it, I'll cry. Like other Latinx caregivers in the US, Shade estimates that about 50% of her income goes to care. She even picked up contract work to supplement her paychecks. With financial strains like that, not even the most efficient goddess of efficiency can sustainably care for the people around her, not to mention herself. But there's hope in a recent development. So I did get good news today. I'm gonna have one of my checks before I die. That's Marvin and his trademark dark humor, talking about a letter that arrived in the mail. The same day our team was visiting them. Marvin used to work for the city of New York, and on 9/11 he was two blocks away from the World Trade Center when the twin towers were hit. About three years ago, it was when I found out that conversation for anybody who got cancer during that time and I was one of those people. We've been talking about how this house isn't sustainable for them. So one thing that we were thinking about was getting them into like a smaller, more manageable sort of apartment. And now we're gonna, that's what we're gonna use money for. See, there's a light always ahead of the tunnel in front of the tunnel. There's always a light I'm coming. There is always a light at the end of the tunnel. But we hope it's not an oncoming. No, I know it's not an oncoming train. My light is not an oncoming train. That's my light. Even though Marvin's cancer diagnosis has come with so much heartache and uncertainty, this chunk of change is a blessing for Shade's family. But the reality is, many Americans don't have any surprise checks coming in the mail or even savings to fall back on. And while this money will take some household chores and upkeep off the to-do list, it doesn't exactly change Shade's everyday life. She's still gonna be financially burdened and feel pressured to prioritize her family's needs, I have no idea. of our own. But how long can that go on? More when we return. Hey, it's Julia Louis-Dreyfuss from The Wiser than me podcast among other things and I've got a little holiday wisdom for you. Hosting during the holidays means lots of cooking and that means your trash is going to be full of smelly, rotting, food, yuck. So here's the wisdom. Get a mill food recycler. I did. We've had hours for years and it has totally transformed our kitchen. It's unbelievable how much less waste and less odor there is now. Plus, it's so easy to use. You toss in basically any food you don't eat, peels, pits, meat, dairy, bones. Last year, we put in a whole turkey carcass, really. While you sleep, mill automatically dries and grinds all your food waste down to about a fifth of its size. That means at night you can fill it after a big elaborate dinner and by morning they'll be room for breakfast. Nothing rots, nothing stinks, no fruit flies. And my favorite part, using mill means none of our food ends up in landfills, which means we're doing a little good for the planet while keeping our kitchen tidy. If you want to manage your food waste in a cleaner, calmer way this holiday season, go to mill.com/wiseer for an exclusive offer. That's mill.com/wiseer. Happy hosting. Do you have a family secret? I think most of us do. I'm Danny Shapiro and I uncovered mine when a DNA test revealed that the dad who raised me wasn't my biological father. That mind-blowing discovery led me to create the podcast, Family Secrets. Each week, I talk with people who've uncovered a family secret of their own. We talk about what a change for them, how they see their family, their relationships, and even themselves. Join me on Family Secrets. Listen wherever you get your podcasts. When was the last time I went on emergency for my heart? Two months ago because it was before your sprained ankle. That's Shade and her mom. Talking about the last time Celia had to go to the ER for heart complications. They told me not to play. Don't go to sleep with it. They won't ignore it. So if it's really, really, really something different and strong, then I call her. She says, "Who you got a call? Call the ambulance." The other version of that story is she's uncomfortable for about two days. Doesn't say anything. Is in deep pain on day three and then goes, "Okay, I'm at the point where I can't take it anymore." I'm guilty. And then goes, "No, no, no. Don't come to the hospital. No need." I just don't like to shake everything, you know, for me, you know. Here in Celia minimized her health needs, reminds me of Shade's approach to her own rheumatoid arthritis, which has gotten much worse over the years. Just how bad her parents don't know. Shade keeps her RA diagnosis largely under wraps for fear of making her parents feel guilty about the amount of care and attention she gives them at the expense of caring for herself. Lately, Shade's been thinking about what this means, not just for herself, but for her daughter too. I sometimes wonder about the sort of values that I'm providing her with, these sort of, kind of like, inherited norms, especially as I think about the fact that I have a pretty severe rheumatoid arthritis, and it is impacting my everyday life. So in five years, 10 years, 20 years, as she becomes the age that I am, I think about the feelings of expectations that she may have, and I don't want her to pick up that as a requirement. I want it to be a choice, because I don't think that I have that now, but I want her to have that. So you're saying that you don't feel that you have a choice? Is that what you're saying? I don't think I have a choice. I think that there's no real system or infrastructure to support us. So we have to make those sort of impossible choices. There have been times where I've had to choose between, well, do I pay my medical bill now, or do I pay my parents? And I don't think that that's a fair system to have her inherited. So that's what I mean by choice. I would love for her to see it as an act of love, but also think about it a little bit more comprehensively. A fair system feels especially urgent on the days when Shade's RA zaps her energy and makes her joints feel like they're on fire. In those moments, Shade has no choice but to stop. Last Monday, I pulled down a bunch of meetings. I didn't do pick up for my daughter. I didn't do drop off. I like kind of just existed and just tried to ride the wave. I also have generalized anxiety disorder. So what happens is when I have very bad RA days, it makes my anxiety swell. I think a lot about, is this it? Like, is this what I'm going to be like for the rest of my life? I'm always waiting for like the shoot a drop where I'm like, oh, this is the day that is going to be the last, like yesterday was the last day that I'll have that level of physicality. Oh, honey. Oh, sweetie. I can, I can see it. I can feel it and you have spent so much of your life caring for so many people, the sadness and the concern I'm seeing on your face. I know it's for you, but I feel like this is mostly because you're like, what's everybody going to do? If I'm not able to be me? Yeah. Who are you most concerned about when I see these tears in this emotion? Who is the person that pops in most like, I'm crying because I can't be there for this person? Yeah. I think that my mom, the struggles with a lot of guilt. My mom is the person who was the me. So she was very much so the person who was like, I can do all the things and I'm going to be everywhere. And then I think that she feels a lot of guilt around the fact that she is making me do these things and be that person and she cannot contribute. So then when I can't contribute, I feel bad about making her feel bad about needing things. I think it's beautiful that you guys love each other at that level, but I feel like there needs to be let's sit down and talk about this moment where it's like none of us are able to do all of these things for each other all the time. It's just impossible. I definitely agree that it feels impossible, but the reason why it feels impossible, the reason why it feels unsustainable is because it is. Like the reason why our loved ones and our family members have to fill in these gaps is because political leaders haven't funded the long-term systems and supports in this country and that the systems that are currently in place are restrictive and crumbling and yes my family is strong and we are powerful and we care for each other and we shouldn't be in this alone. Absolutely and you're powerful and you're strong because you've had to be. Yeah. So there's a whole bunch of us doing these acts of love and acts of service quietly and and behind closed doors and it's not something that we can continue to do forever. What would you say to your past self from 2018 when you were just beginning your caregiving journey, pretend you're giving that version of Sharday a pep talk. What would you say to her? Yeah you were not going to figure this out and that is okay. I would probably say that. I would say give yourself grace because it is not your fault. We can figure a version of okay out but we're not going to get a picture perfect moment here. You know I think that that is very healthy for 2024. Yeah. And I hope that every tear that may fall is caught by someone who loves you as much as you love everyone else. I want the same thing for you. I think that we as caregivers need to come together and have more moments like this. We're honest and transparent and we mobilize each other and challenge each other to action. Our family is my family. I'm sure your family we're we are committed to taking care of one another and as a nation we need to just make it easier for all of us to take care of each other. Commitment to ourselves and other caregivers starts with understanding that there are a lot of unfair choices we are forced to make every day by putting our own health needs last or deciding between our job and taking care of our loved ones. These impossible choices aren't fair to anyone especially women. There's a sociologist Jessica Calarco who puts it like this. Other countries have social safety nets. The U.S. has women. When unexpected challenges pop up it shouldn't just be up to people like Shade A to be the plan. Like We said in the first episode of Squeezed, caregivers are the backbone of our economy, and they should be treated as such. I recently made a trip to Capitol Hill with AARP in the Creative Coalition to advocate for family caregivers. I'm happy to say that lawmakers listened, and I was unsurprised to learn that many of them have caregiving stories of their own. They get it. So I trust that things can change. But this is on all of us. I believe, well, I need to believe, that we can do better as people and as a country. Caregivers deserve that. See you next time on Squeezed. I'm your host, Yvette Nicole Brown. There's more Squeezed with Lemonada Premium. Subscribers get exclusive access to bonus content like previously unheard clips from all our voices in this series, subscribe now on Apple Podcasts. Squeezed is a Lemonada media original. Crystal Genesis is our senior producer, Julia Yurt, Tess Novotny, and Hannah Boomer-Shine are our producers. Field production by Julia Yurt and Ivan Kurayev. Our theme music is by Andy Kristen's daughter with additional music by APM Music. Ivan Kurayev is our engineer. Jackie Dan Zigger is our VP of narrative content. Executive producers are me, Yvette Nicole Brown, Jessica Cordoba Kramer, and Stephanie Widdle's Wax. This show was created in partnership with the Robert Wood Johnson Foundation, a leading national philanthropy dedicated to taking bold leaps to transform help in our lifetime and pave the way together to a future where help is no longer a privilege, but a right. Follow Squeez wherever you get your podcasts or listen ad-free on Amazon Music with Your Prime Membership.