← Happier with Gretchen Rubin
Happier with Gretchen Rubin
More Happier: Caregiving Roundtable: How Do We Embrace Elder Care Without Losing Ourselves?
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- [00:02]
Yvette Nicole Brown
Lemonade.
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Rita Shula
Amazon Health AI presents Painful Thoughts why
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Courtney Martin
did I search the Internet for answers
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Gretchen Rubin
to my cold sore problem? Now I'm stuck down a rabbit hole filled with images of alarmingly graphic source
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Courtney Martin
in various stages of ooze.
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Gretchen Rubin
I can clear my search history, but I could never unsee that.
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Courtney Martin
Don't go down the rabbit hole.
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Rita Shula
Amazon Health AI gets you the right care fast. Healthcare just got less painful.
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Gretchen Rubin
Hello, we are here for more Happier A Podcast where We Get Happier Today's episode is a special episode. It is the next in our Roundtable Conversation series and today the topic is caregiving. For many of us, we spend years planning for a career or a new home, but we do not pre plan for the moment we become caregivers. Whether we're caring for a parent or a spouse now, or looking ahead to the future, caregiving is an experience that often arrives with a shock, but it is something we can prepare and plan for. I'm Gretchen Rubin, a writer who studies happiness and human nature. I'm host of the Happier with Gretchen Rubin podcast and the author of many books, including the books the Happiness Project and Happier at Home, that are particularly relevant to our discussion today. Joining me for this conversation today are three terrific guests. First, I will be talking to actress and Squeezed podcast Yvette Nicole Brown. Yvette is an Emmy nominated actress, writer, producer and host. She's known for her roles on so many TV shows including Community, Big Shot, Drake and Josh and a short but unforgettable appearance on my favorite TV show, the Office. On the film side, her work includes Dreamgirls, Tropic Thunder, Endgame Code three and K Pops. In the voiceover world, Yvette can be heard in Inside Out 2, Zootopia 2, and many animated shows. She is an NAACP Image Award nominated writer for Always a Bridesmaid romantic comedy she wrote and executive produced. Yvette also just completed her second season of her podcast Squeezed with Yvette Nicole Brown that is a love letter to caregivers and she is a caregiver herself. We are also joined by author and podcaster Courtney Martin. Courtney Martin writes about care, justice and the human condition at her substack Examined Family and through her books, most recently Learning in Public. She is the host of the Wise Unknown podcast and the co founder of the Solutions Journalism Network. And we will also be talking to Rita Shula. Rita Shula is the Senior Director of Caregiving at the AARP Public Policy Institute. She drives the development of family caregiving initiatives by providing content expertise within AARP and in partnership with a range of external collaborators. Her work bridges policy and research to practice. She works with clinical experts and key partners to develop programs and tools to help healthcare and social service professionals to support family caregivers. Hello, Yvette, Courtney and Rena. Hey. Hi. Hey.
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Rita Shula
Hi.
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Gretchen Rubin
I'm so happy to be having this conversation with you. So today we are gonna dive into the core question of how we integrate elder care into our lives without losing ourselves. And we will talk about issues like thinking about caregiving now as one of the best things that we can do to set ourselves up to be happy in the future. We'll explore how to balance the heavy lifting of elder care with taking care of ourselves. We'll talk about the policy safety nets to know about how to have difficult conversations. We are just going to get into it all, so. So let's jump in. So, Yvette, Courtney, and Rita, I would love for each of you to briefly share your own caregiving story. And Yvette, let's start with you.
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Yvette Nicole Brown
I was a actor working in Hollywood when I first noticed that my dad was having some memory issues. My mom and I both noticed my dad was back in Ohio. And so I told myself as soon as my show, I was on a show called Community. As soon as Community gets canceled, I'm going to get daddy. I don't care what's going on, I'm going to get him. So within six months, the show was canceled. I went and got my father and brought him back to la. First time I had ever lived in the same house with my dad because my parents were divorced my whole life and that was my first time getting to be in the same home with my dad. We soon found out that it was dementia. Then it became Alzheimer's. I had him in the home with me for 11 and a half years until he had a fall and no longer could walk. And so now he's been in a board and care for about a year and a half, which is like 10, 15 minutes from my house. So I still see him all the time. But it was a seismic shift from having him with me to releasing him and allowing someone else to be that go to person for him. But yeah, So I did 11 and a half years in the home and we're about almost 13 years in, completely in my caregiving journey with that amazing man.
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Gretchen Rubin
Wow. Okay. Courtney, how about you?
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Courtney Martin
Well, just sending a big care bear stare to Yvette as someone with a father with dementia as well. And I just feel like I get it. You get it. We know so many listeners get it, you know, I became a parent 13 years ago. So that's one piece of my care story is I have two daughters, daughters who are now nine and almost 13. But I started caring for my dad and my mom really about three years ago in a very sort of primary caregiver way. And, and I really. I've been thinking about lately that the journey really went in terms of elder care from very isolated and shameful. I think a lot of people have this experience. When my dad first got diagnosed with early onset dementia, my parents didn't want to tell anyone. I was begging them to let me help them. My mom refused to let me help. My parents have been together since their sophomore year in high school. They met in sixth grade. So there are these, like, long standing, deeply embedded, intertwined people. And my mom really refused help for years until she finally accepted help. And then my brother and I relocated our families. I moved in with my parents. We decided to do this, like, village, you know, all hands on deck thing. And the second we decided to do that, my mom's body exploded. She had an ulcer in her body that we didn't know was there and exploded. And she was at the er and the doctor said say goodbye, because I don't know what kind of damage has been done inside her body. The incredible thing is my mom is here, she's okay. But it meant my mom was holding on to all of the care, responsibility, and then she had to just let it all go. So we also lived with my dad, my two daughters, my husband, my mom and dad all living together for about a year and a half. And my dad's dementia was just too hard for us to handle at home. So now he's in a memory care facility and incredible, incredible community. And like Yvette, it's about 20 minutes away. I see him every week. I'm his primary caregiver. My mom's in, like, deep grief, and so we're just sort of riding alongside with her at this point in that grief journey.
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Gretchen Rubin
Wow. Okay. And Rita, how about you?
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Rita Shula
Well, I started caring for my grandmother in my late twenties as she aged. And when she passed away, really almost immediately thereafter, my mom started exhibiting just really different symptoms. And so we went to the doctor. We thought it was grief. We thought, you know, individuals diagnosed her with mental health issues, depression, things like that. Well, fast forward three years later, she had been given a diagnosis of Alzheimer's. And I being in the space, I knew enough to know that it was not Alzheimer's. Right. So we were fighting this battle Trying to figure out what it was. So picture me three in the morning, Googling, you know, information to try to figure out what this was. And it ended up being that she had frontotemporal dementia, frontotemporal degeneration, which many know now FTD as the Bruce Willis disease. And so I cared for my mom for 15 years as she lived with that, and we navigated that journey. And during that time, I had two children. I got married, had a wonderful man that, you know, really said, we're going to do this together. And we were able to have two children who grew up in that. So I was that sandwiched caregiver for eight years until she passed away during COVID Not from COVID but during COVID at which point, by then, we had placed her in a facility. And so we were those families on the other side of the. Of the glass, until, fortunately, a nurse snuck us in as she was dying, and we were able to be there by her side during that time.
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Courtney Martin
Oh, beautiful.
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Gretchen Rubin
Wow. All of you have really stepped up in very difficult situations. That's so heartening to hear these stories. Now, one thing that comes up a lot in this area is, Courtney, I think you sort of alluded to this is there's difficult conversations. There's conversations that people do not want to have. They don't want to talk about, well, what are the possibilities about assisted living? And have you. Do you have a will? What do you think about a do not resuscitate? How do we think about this or frame these kinds of conversations to feel more positive, you know, or how do we broach them? Have any of you thought about how to do that? Because I think that's something that so many people struggle with.
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Rita Shula
I think one of the things that's really important in that struggle is that cultural perspective, right? There's so many cultures that when you even think about or talk about illness or sickness or death, it's taboo because you're bringing it on to that individual. And I think breaking through that and really being able to talk about how talking about these things now allows you to be cared for in the way that you want to be cared for when this happens. Because mom or dad or grandma, if I don't know what you want, and I'm in a crisis situation, yes, it might not be what you want. Right. And here is what I know that I will be able to do in those situations. I think so often when we don't talk about it, when it happens, everybody is just scattered. Like, what do we do and that's when mistakes happen, or people's wishes don't
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Gretchen Rubin
get fulfilled, or different family members disagree because they don't know what the person wants. And so then it becomes a conflict.
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Yvette Nicole Brown
Yeah, my brother and I were very blessed. My mom passed also during around Covid time, but not because of COVID And my brother and I had always known what she wanted. She always was like, I don't want to be resuscitated. Nothing heroic to keep me alive. I don't want to be on a ventilator. All of those things were perfectly clear. My brother and I knew it our entire lives. So that's the gift that my mother gave us. But I saw a billboard in New York once that said, have the conversation. Have the difficult conversation once, and then you never have to have it again. So the way I would bring it up is say, listen, this is gonna be a rough one. For about 20 minutes, this is gonna be rough. But we're gonna pull this band aid off, and I'm gonna tell you what I want, you're gonna tell me what you want. We're gonna decide whether we wanna be resuscitated or not. And then we're gonna put this in a envelope with open if something happened to me, and we're gonna leave it alone. So I think using humor and just telling them this, these decisions will be made whether we have this conversation or not. But I would like to make the decisions that you'd be happy with. And that's fair. Tough conversation, 20 minutes. Never have to have it again.
- [11:58]
Gretchen Rubin
Right.
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Courtney Martin
Although I will trouble that a little in the sense that I've wondered about that. My dad was actually very comfortable talking about death. He was a Buddhist, and he really believed in facing your death. And I even found in some of his old binders, him really like writing in his journals about it. But it's interesting, the abstraction versus what you actually experience. And I think all of us have. Could speak to this that you, you know, something like a dnr, something that's very straightforward about. Would you want to be kept on a ventilator? Is a conversation to have. Absolutely. But there's so much about the end of life journey. I'm thinking especially with dementia, although, I'm sure, you know, there's all kinds of versions of this. It reminds me of parenting in the sense that. Or even giving birth when, you know, you're coached through things or you're told, like, here's the way to handle, you know, a toddler's meltdown. And then you don't really know till, you know, like, you're in the middle of it. And care is about the person. Each person is so unique. Their becoming is unique, their unbecoming is unique. And so there's been so many moments in my journey with my dad where I, you know, and I'm a logistics person. I'm the Capricorn in the family. I'm the eldest daughter. I'm like, let's get the spreadsheets done, you know, So I believe in that. But also I've had to really open up to the idea that there's a lot that I just have to learn by doing. And I'm just like present in this journey, you know, for sure.
- [13:18]
Yvette Nicole Brown
There's things that I learned, you know, first of all, there's. I always joke and say there's no manual on how to be a caregiver. And maybe there is, but none of us have time to read it. So we really are so in the trenches that we don't even realize what the best thing to do. In order to be prepared to be a caregiver for an elderly person, you need to research every single disease that could possibly befall them and be ready for every single one of those possible things. And there's no way you could do that. So you become an expert on their ailment when they get it, and then when what you find out through the years of doing the work and also just reading up on what you can, like for dementia. The thing that changed my life was. Yes, and, you know, improv. I spent the first couple of years with my dad trying to bring him back to my world and realized that it's easier just to join his. So now we're at the point where he's pretty much non verbal, but when he does speak, it's something that's fanciful that only he can see. So he'll say, let's get on the train. I go, we going, where we going, Daddy? Where we going? What color's the train? Should we stay on all day? Or like, I play with him, we play back and forth. And that's something that I wouldn't have known. And so to tie it back to asking the questions that we need to know later, we ask the questions when they're still able to decide. And then as we see who they become through their journey with their ailment, you get a better idea of what. Because I was a absolutely resuscitate chick that was. I'm like every heroic effort, keep me here until I talk to someone in palliative. Care, and they broke down. What happens to a body when you're trying to resuscitate it. Now, if you're 25 or 35 or even 50. Yes. Crank that chest. Let's get that heart going. If you're 85, you're breaking ribs, you're traumatized. It's a whole nother level of trauma to that body. And so I have to make that decision for my father because he doesn't know how far along he is anymore. So there is. You have the conversation, but you have to also be willing to adjust knowing what you know about, what they would want if they were in their right mind, what they would say yes to if they knew what you knew.
- [15:21]
Gretchen Rubin
Right, Right. Well, picking up on what you're saying, this is often something that we deal with when it's presented to us. Knowing what you know. Now, all of you, how would you say to people to be thinking about it ahead of time, like something to be considering as part of your life plan instead of a disaster to be managed in the moment, or maybe a slow rolling disaster where it's kind of like, oh, I'm seeing there's issues. The issues are getting worse. What are the doctors saying? Where it's unfolding slowly, but what's that thing about I went bankrupt slowly and then all at once? And sometimes that's what happens with medical issues. Any thoughts about how people can be thinking about this in advance to be mindful of it?
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Rita Shula
You know, I like to think about it. We plan for everything. We plan for our weddings. We plan for our kids to go to college. We plan for our retirement. We even plan for vacations. We plan for every life circumstance except for getting ill or except if an accident happens or someone or yourself eventually passing away. And so we. What I want to do is really ensure people are normalizing this conversation. It is a fact of life. And so as we are planning for all of these different things, let's make sure that we're planning for that what if too. And not even a what if, but a when if. And so. And having those conversations with each other, we can't have it in isolation. So it's knowing what we want, when that happens to us, but it's also knowing what our family members want as well, and just having real. I love, loved Eyvette, how you just made it really real. What are those conversations? And you know what? There are general things we can talk about, but every single family, that conversation is going to look different. And I would say we need to encourage professionals, if we have retirement and accountants and tax attorneys. And all of these individuals need to be having these same conversations with their clients to begin to think about some of these things and what looks like when these things happen.
- [17:26]
Gretchen Rubin
Right? Right. As you say, normalizing this conversation. So it just feels like we plan for everything. We plan for this too. We know that it's gonna happen. Let's have a plan. Well, coming up, we're gonna continue the conversation, but now we're gonna take a quick break.
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Rita Shula
Amazon Health AI presents Painful Thoughts I
- [17:53]
Gretchen Rubin
I can't stop scratching my downtown. Mm, yeah, but I'm not itching to go downtown and tell a receptionist I'm
- [18:00]
Yvette Nicole Brown
here to talk about my downtown. Some things you'd rather type than say out loud.
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Rita Shula
There's no question too embarrassing. For Amazon Health AI.
- [18:10]
Courtney Martin
Chat your symptoms and get virtual care 24.
- [18:13]
Rita Shula
7 Healthcare just got less Painful
- [18:18]
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- [18:35]
Gretchen Rubin
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- [19:53]
Gretchen Rubin
Yvette, let me go to you in your podcast Squeezed you talk about the juggling act when you entered into your caregiving situation, what do you think you were most unprepared for? If you could help other people avoid a pitfall, what was it for you?
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Yvette Nicole Brown
You know, it's difficult for me to chime in on that in particular, because, again, I had never lived in the house with my father before.
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Gretchen Rubin
Oh, yeah.
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Yvette Nicole Brown
So my biggest issue was, what's it gonna be like to live with Daddy? Like, I was more. I was feeling confident that whatever his ailment was, or we found out what it was, I'd be able to deal with that. But it was the. I'm a kid in the house with my dad for the first time. So I was more excited about the joy of that.
- [20:32]
Gretchen Rubin
And how old were you then? I'm just curious.
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Yvette Nicole Brown
Oh, gosh, I was. I was good in grinds in my 40s. I was. Okay, okay, 41, 42.
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Courtney Martin
Like, I was grown.
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Yvette Nicole Brown
I was grown. It was the first time. But I want to go back to something Rita said. The question before the break where you said about, how do you prepare someone for this? What I say all the time with squeezed, which is a love letter to caregivers, especially those like Rita, who are taking care of elderly parents and, you know, babies. Yeah, Sam, we're all going to. Before we leave here, we will all be a caregiver or a caregiver. No one escapes it. And I tell people, if you're a parent, you're a caregiver right? Now, you just don't call it caregiving. Right. So every single person will experience it. So the goal is for conversations like this, for books and squeezed and all the other things to tell people. This is what it's like. And what I tell people all the time, it's nothing to be afraid of. Caregiving is just love. If you know how to love, you know how to be a caregiver. If you love someone, you want them to eat, you want them to be safe, you want them to be clean and have some shelter when you love someone, opportunities to laugh and enjoy some good music. All of this stuff we know how to do, it's just you're doing it for your auntie or your friend or your baby, you know?
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Gretchen Rubin
Well, I love that framing of it, and I love you talking about the laughing. You're so good at using humor. You mentioned it before, like, entering into it was sort of an improv. How do you use humor? Because this is something that gives people resilience. It lightens up tough situations. It's so valuable to use humor, but it's kind of the first thing to go in a stressful situation. How do you channel humor?
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Yvette Nicole Brown
You know, it's funny. Not in my life. My mom used to always say to me and my brother, you laugh to keep from crying. That is something your mama, too. Ready?
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Rita Shula
Yep.
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Yvette Nicole Brown
Courtney's saying, yep.
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Gretchen Rubin
You know how to do this. Okay.
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Yvette Nicole Brown
We literally were raised to find we would come home and the lights were off because the bill maybe didn't get paid. She'd be like, well, get those candles. We about to have a who Nanny hootenanny. You know, she would turn everything into a fun thing, you know, and so nothing was ever heavy. And the other thing I wanted to bring up too, in what we were talking about before, there's an amazing symposium called the Nwell summit. And its whole goal is to prepare everyone for end of life. And as Rita was listening before, you know, you get married and you do this, you, whatever, everybody don't get married. Everybody don't buy a house. Everybody don't have a kid. Everybody dies.
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Gretchen Rubin
Right, Right, right.
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Rita Shula
Why?
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Yvette Nicole Brown
It's the one thing we're afraid to talk about. We don't plan anything. It's really. We're shooting ourself in the foot with that. It's one thing that's gonna happen to each of us once. So have the conversation, make the plan, figure out what you wanna do, and then get busy living the rest of your life. But that one thing gonna get every single one of us. Every single one of us.
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Gretchen Rubin
I think all three of you in your different ways are doing so much to bring this into the conversation, to have conversations like this and to get people thinking and talking about it, because that's so valuable. One more thing, Yvette, that I would love to ask you is, you know, there's the old saying of you can't pour from an empty cup. For you. Was there a boundary that you set for yourself that you think actually made you a better caregiver?
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Yvette Nicole Brown
No.
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Gretchen Rubin
No. Ooh. Okay.
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Yvette Nicole Brown
I have no boundaries. I have self care.
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Gretchen Rubin
Oh, I love this answer.
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Yvette Nicole Brown
I literally am an outward facing human being. And I know these two women and you, Gretchen, and just meeting you two down here, I know it's the same thing. We become caregivers because we are sacrificial givers. Because guess what? Every single one of us could have decided not to do this. There's no law or rule that you have to take in someone that is DNA linked to you. There's no rule.
- [24:06]
Gretchen Rubin
But do you have something like, I need to have an afternoon nap. I have to have time to read a novel. Gretchen, listen, I could make a list
- [24:13]
Yvette Nicole Brown
of things I need. I'm saying, do I have the ability
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Gretchen Rubin
to choose to do that over caring
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Yvette Nicole Brown
for someone I care about? I don't have it. And I know that's not healthy. I'm not saying be like me. I'm saying please don't be like me. You have to find something that feeds your spirit. It's the oxygen mask on the plane, right? Put it on first. I just don't know any caregivers that know how to do it. None that are good at caregiving. I haven't found them interesting.
- [24:38]
Rita Shula
Am I wrong?
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Yvette Nicole Brown
Ladies?
- [24:39]
Gretchen Rubin
Okay.
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Rita Shula
Yeah.
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Gretchen Rubin
Courtney and Rita, what's your response to that?
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Courtney Martin
Well, I'm with you, Yvette. Actually, I was thinking about the one time I took a nap for like 18 minutes. Like this is months ago and my dad was still living with us. These neighbors came by, knocked on the door and yelled at my mother cause my dad had peed in their lawn. This is real talk. And I woke up and I found out these people had screamed at my mother. And I was like, why wasn't I there to interrupt them? And of course I did go and deliver them flowers. And I was like, oh, these people are real a holes. But that's what happens when we take a nap. So I'm with you. I do find I like to think about community care as opposed to self care. Like my community care is I go to the dive bar with my girlfriends and have a beer and you know, leave for like one hour after I get the girls, my daughters, to sleep or whatever. You know, it's like I laugh. I mean the laughter in our house is never ending. My, my daughter, my nine year old daughter's been watching Saturday Night Live with my mom. She swears she fast forwards through the bad parts. She definitely doesn't. The two of them have all off color inside jokes. Like that's we're laughing, we're, you know, hanging out with friends. You know, I'm not getting manicures or pedicures for sure. I'm. I'm on that. Not on that train either.
- [25:54]
Rita Shula
Yeah. And I think it's so. It's such an important conversation. It's so hard too, right? When I was in the thick of it, I don't know that I had boundaries either. And I don't think that that is the right thing either. I know for myself, you know, I was working full time while doing that care too. So my boundary or my time was parking the car and sitting in the car for 10 minutes. My husband and others in the house would know before I could come, who knew the car or pick up my
- [26:23]
Gretchen Rubin
baby sitting in the car.
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Rita Shula
Right. I need to turn my music up loud, whoever it was on the radio, and just listen and sit still and be with myself for 10 minutes. And that's not a lot of time. But one thing I want to say is that when we think about caregiving, we often think about individuals in their 50s and above providing care. You know, I was younger when I started and aged with it, but I see so many caregivers now in their 20s and 30s and early 40s who are like, they look at caregiving a little differently. They're giving their all, they need support, but then they're leaning on each other. And I think their ability to publicly talk about the challenges that they're facing, whether it's through so many influencers on social media or even in their own communities, is really kind of changing this boundary conversation. And I really applaud that. So they still have those stressors, but they're like, you know what? I gotta step back for a moment and really take care of myself in whatever way I can. That's good, right?
- [27:26]
Gretchen Rubin
Right. Well, and then, Courtney, let's pick up on something that you mentioned about the dive bar, the community. How can a person pre build a community of care? Like, really think about that mindfully as they're looking into the future with their friends, their neighbors, the people that they, as you said on, like, social media, people find each other. How do you think about pre building a community?
- [27:45]
Courtney Martin
Well, you know, I've just been so rich in community because I used to live in a co housing community. When we moved in with my family, I left that co housing community. So I had a very formal experience for a decade of living in community. I'm a neighbor person. I love meeting my neighbors. I love being interdependent with them. I go to a church, a Unitarian Universalist church, where my dad was welcomed and could have music. And it has been a beautiful community. I think there's community to be had all the time, activist community. You know, I've done a lot of work on school integration and met all these incredible other parents in my community that, you know, now become the person that brings you the casserole when your dad wanders and you can't make dinner, you know, so it's like, I think all of those interconnections have served me in a million ways. The trick and Yvette was speaking to this is that I had to shift from being the helper to being the helped.
- [28:36]
Gretchen Rubin
I think that's a very hard shift.
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Courtney Martin
Yeah. And understand that that is a sacred cycle. It doesn't matter if you have the community, if you don't know how to be the one to accept help and admit that you need it. And I could tell you a million reasons why someone else should get the meal trained, not me. And I had to finally be like, you know what? It's not about the casserole. It's about the person saying, I recognize this moment you're in. And here's my handwritten note about this recipe that we've handed down in my family for years and just how that touched my heart and made me feel accompanied.
- [29:09]
Gretchen Rubin
Yeah. Someone once said, it's allowing others the blessing of giving.
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Rita Shula
Yeah.
- [29:13]
Gretchen Rubin
And in order for them to have the blessing of giving, we must receive.
- [29:17]
Yvette Nicole Brown
That's good.
- [29:18]
Gretchen Rubin
And that's very hard.
- [29:19]
Courtney Martin
Including, by the way, the elder you're caring for. I think sometimes we get in these conversations, and it's as if it's only binary. And the truth is, my dad still takes care of me. He can't find speak. He's in a wheelchair. But my weekly pilgrimage to be with him and hold his hand and play, you know, Beatles songs on my iPhone for him is a spiritual experience for me. And it really steadies me if I can be present and I can feel his love through the haze of what this disease does. He's still taking care of me. And I think that, you know, my mom needs to feel like she's taking care of me even though she's grieving. You know, it's like, we really have to not put our elders into this bucket of, like, oh, now you're the one who's dependent.
- [30:02]
Yvette Nicole Brown
Right? That's good. That's good.
- [30:04]
Gretchen Rubin
Yeah. Yvette, do you want to expand on that? That sounds like that really resonated with you.
- [30:08]
Yvette Nicole Brown
Yeah, it really did, because my dad is pretty much nonverbal, as I said earlier. So when I go to see him, it's not us having a conversation. I'm not telling him about my day, and he's not responding. Oh, that's nice. We can't do that anymore. So my moments with him is like with Courtney. Yours is the Beatles. Mine is the moonglows. My dad loved doo wop music, so I'll put the moonglow he listened to a little sincerely, and I can see him just going back in his mind, because music brings Alzheimer's patients back, so he's in his mind, he's 15 again. He's in his doo wop group singing. And so that is communal. That is church for me. That is connecting with the soul of who he is. And he can see in that moment when he's back that I'm enjoying my time with him.
- [30:52]
Gretchen Rubin
Right.
- [30:53]
Yvette Nicole Brown
And this is his again, going into his world. I'm listening to his music in his room, and we're having this moment, and I'm purposely sitting with him in his space, and it's really, really beautiful. And my dad, the most loving thing that he does is whenever we're together, he holds my hand, so he's aware that I'm his. He may not remember my name, he may not know where he is, but he knows that this connection between us matters. And he makes sure that he holds on to the connection, and that's enough for me. And that's the thing about a caregiver. As they progress in their disease, you have to figure out what's enough for you and not need more from them than they can give, not need more from this life than it can give. We gonna get what we get, you know, and some of it's very difficult and heartbreaking. But he's still here. And as long as he's still here and I get to hold his hand and kiss his little forehead, all is well in my world.
- [31:47]
Gretchen Rubin
Right?
- [31:48]
Rita Shula
Yeah. And I really love that. And we talk a lot about sandwich generation, right? And we talk about that squeeze. But this idea that you both raised about being present is so important, and it's really important in that sandwich space. I mean, I think some of the most important memories for me were the ability for my children to love my mother for who she was. Like, they did not see her as someone with ftd. She was Grandma. Right. When eventually she moved into a facility, they went, they held hands with her, they helped feed her, they helped care for her. They rubbed her hand. You know, they were a part of this journey, and it calmed her, and it allowed me to just be present and enjoy that moment where it wasn't choosing ballet class over going to the nursing home. It was taking care of my family and us as a family together. And I think as caregivers, you know, we have so much that is put on us that sometimes it's hard to be in that moment and really be with that person and not have these other thoughts of everything else you have to do. So this idea of being present and being in the moment and being a part of community, it's just so important. Right.
- [33:05]
Gretchen Rubin
That sense of presence. Well, sort of cutting against that. I know. Courtney, you've talked about our obsession with getting it right. Like the medication schedule and doing everything perfectly is kind of our desire to think that we're in control of something when we're not actually in control. And so back to picking up to this idea of presence that Rita and Eva and you have been talking about. How do you not let that desire for, like, perfect control get in the way of presence?
- [33:29]
Courtney Martin
Well, I mean, first of all, you'll just be so deeply humbled by the sandwich generation caregiver experience that you can't even have a delusion of being perfect. I mean, when my 9 and my 12 year old is becoming a tween and my 9 year old is begging me for a dog and my mom needs dinner and my, you know, it's like the facility's calling me for my dad. It's like I'm in the car screaming and crying like, like, rita, do that. Right?
- [33:52]
Gretchen Rubin
The car looms large.
- [33:53]
Courtney Martin
I mean, this is a good thing that it. It strips you of delusions of perfection, for sure. The thing I have to choose to do is, for example, now living with my mom is, you know, I'm racing, I'm getting dinner, I'm asking her what she needs from the grocery store. I'm telling. Giving her the update on the call from the facility. So I need to sit down and remember to do this, sit down with her and say, mom, how's your heart today? How are you doing today? Or, you know, watch the Valkyries game with her or, like, enter into her world. Like, how are your friends doing? How's. How's Melina's grief, you know, which is one of her best friends. And so I don't know how you all feel, but I have to choose to do that when I'm in my kind of multitasking, getting it all done mode. I have to remember to do that. I have no delusions of perfection anymore, but I do have delusions of, like, getting it all done, that I sometimes have to just be like, this is worth the 10 minutes to look her directly in the eye.
- [34:44]
Gretchen Rubin
This is the spreadsheet aspect.
- [34:46]
Courtney Martin
Yeah, yeah, you got. I have to shift out of that mode deliberately. Or I could stay in it all day.
- [34:52]
Gretchen Rubin
Well, coming up, we are going to continue our conversation about caregiving. But first, this break.
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- [37:15]
Courtney Martin
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- [38:22]
Gretchen Rubin
Okay. Rita, I want to talk to you a minute about. AARP really deals with the heavy logistics. In your experience, what is the relief that families and people feel when they feel prepared? How can knowing the policy and having a plan help bring down the anxiety for people as they're thinking about the future?
- [38:44]
Rita Shula
Well, anxiety is real, especially for family caregivers. You know, we're talking about making choices. And do we do the medication now? Are we perfect at this? We can't be, as Courtney said, be perfect at everything, but what we can do is be supported. And I think that's where things fall short. You know, sometimes caregivers have to make choices because everyone around them is putting the onus on them to do everything right. And so when we think about policy, for instance, and the importance of policy to support caregivers, let's just take something like paid family medical leave. You know, right now we know 13 states, Virginia, just passed paid family leave, and D.C. offer this. So often we see family caregivers having to take off of work to provide unpaid care, and they're not getting paid for that. So they're being expected to hold a job while at the same time not getting paid to take time off to do the things that they're being asked to do in the first place. And so when we look at policies such as paid family leave, it's really critical to offer that as a support to that caregiver. If I know that I can take my mom to the doctor and still get paid for that day, that takes away so much of the stress. We know in our research that family caregivers are doing so much complex care. So we talked about medications. But what if you're doing 10 medications a day? Sure. What if you're doing wound care? What if you're preparing special diets? These are all things that family caregivers are increasingly doing for longer periods of time. And guess what? Families are telling us we're not getting trained to do this. So imagine, and you all might be doing this yourselves. You're doing this type of care, and you have no idea what you're doing or very little idea of what you're doing. And so there's current policy that says providers can get reimbursed by Medicare to train family caregivers so this is another really important policy that, you know, we're trying to ensure that providers are actually utilizing. But if I can go into a provider's office and have an expert say to me, this is how you do it. Allow me to ask the questions so that I then walk away feeling more confident and prepared again, that takes a lot of the stress and strain away from me. So it's really critical that, you know, oftentimes we put the question, caregivers, how can you do better or what can you do different? I like to take that back and say, medical provider, what can you do? Employer, what can you do to really support that individual?
- [41:31]
Gretchen Rubin
Well, Rita, picking up on that, I think a lot of people do worry that caregiving is going to ruin their career or really impact their career. How can understanding workplace protections, the fmla, empower people to stay engaged with work while still trying to have this presence at home and to do this care?
- [41:50]
Rita Shula
I love the word empower because I think a lot of times caregivers don't feel comfortable talking about their care in the workplace. So it's fun for me to talk about my daughter in the play that she's in this weekend. It's not so fun for me to say I need to go figure out which nursing home to place my mom in. Right. So we need to create cultures within our workplaces that allow caregivers to be able to have these types of conversations and to know that when they have these conversations, they can't be discriminated against. When they do need to leave work for, you know, whatever care responsibility they have, that they'll be able to do that and get paid. And guess what, they'll still have vacation days where they can actually take off for themselves too. And I think that's the critical role that policy plays because it comes into play across all of the systems, the broken systems that family caregivers really have to engage with on a day to day basis.
- [42:53]
Gretchen Rubin
Well, this is so confusing. Are there like three key things that, okay, everybody needs to know about this, like, figure this out. At the very least, is there something you would point to as most essential?
- [43:02]
Rita Shula
You know, I wish that I could say it was that easy. You know, unfortunately or fortunately, a lot of these laws happen, legislation is at the state level. So it is important to feel empowered to have that conversation. Let's say you're a working caregiver, to be able to go to your HR department and to know what benefits that you have, whether it is a federal benefit, whether it's a State family leave benefit or whether it's something that your employer offers. Here at aarp, we offer caregiving leave. So specific caregiving leave for those types of needs that you have. Every employer doesn't have that. We see these things increasingly occurring, but it's important to feel empowered again. I go back to that word you used to be able to have that conversation with your manager or with an HR department to be able to say, these are some of the things that I'm experiencing. How can you help me now? I'll take a step back and say it's hard to do that because everybody doesn't have a safe space and an employer like that. And so the more that we can ensure that the individuals, the professionals that caregivers interact with know these different policies that can actually support caregivers. It's important. I mean, I think another thing is the financial piece, right?
- [44:27]
Gretchen Rubin
Oh yeah.
- [44:28]
Rita Shula
The out of pocket costs for family caregivers over $7,000 a year. Family caregivers are giving a trillion dollars in economic value of unpaid care. So these things are critical. So policies such as tax credits, anything that can go to helping that family caregiver recoup some of what they're giving out is really critical.
- [44:53]
Courtney Martin
And Gretchen, can I say one thing? I just want to draw a line between all this important stuff Rita's saying about family caregivers and profess. I mean, in the same way that we need to make family caregiving visible, we need to make professional caregiving visible and valued, you know, in this culture. Okay, yeah.
- [45:09]
Gretchen Rubin
Yvette is clapping.
- [45:10]
Courtney Martin
It is women of color, it's immigrants who are right now under fire administration. Like the people who do this work, it's just like the most sacred work and similar to taking care of our children, which we also don't value.
- [45:23]
Gretchen Rubin
Right.
- [45:24]
Courtney Martin
And you know, one of the things on my journey that I've discovered as a journalist is that there are worker owned cooperatives that do home health care. So that's one of my calls to the audience is like, look, it's a small part of the market, but it's a really beautiful win, win, win, where workers are the leaders of their own organization, they're setting their own policies. They're more likely to stay longer in love their jobs with your loved one. You're happier because they're happier in their job. So, you know, there's been this huge private takeover of a lot of home healthcare and a lot of nursing homes and assisted living facilities and we really have to look for these big scalable solutions. That rehumanize and sort of put caregiving, both professional and family caregiving, in its rightful place, which is like the most sacred thing we do.
- [46:11]
Gretchen Rubin
That's a really great point. I'm so glad that you rounded that out. Well, it's almost time to let you all go. But before we end it, I would love if each of you could suggest a try this at home suggestion that you would offer to listeners who are at home something that they can do themselves to think about this, prepare for this, get through it. If they're in it. You can choose your lane. And Yvette, I'll start with you. What's your try this at home suggestion?
- [46:38]
Yvette Nicole Brown
Well, this is part of the get through it part. I think that it's important for everybody to figure out the thing that gets them in the flow. And the flow is that thing that you look up and it's been three hours and you're doing it. And it felt like five minutes for me. I discovered when my mother passed that that's building Lego. If I can build Lego, some Lego, I will look up three hours later and have a Winnie the Pooh or a Range Rover car. Yeah, Taj Mahal something. But it could be knitting, it could be. It could be crocheting, it could be woodworking. I don't know what that is for you. It could be coloring. I have a lot of friends that color.
- [47:16]
Gretchen Rubin
Huge resurgence of adult color.
- [47:18]
Yvette Nicole Brown
Yeah, it's usually something you did when you were about 10 years old and your homework was done and you had dinner and you had like an hour left before you had to go to bed. What did you do? Find something in that magic little bit of time and bring it into your adulthood and get in the flow. Because you're gonna need your mind to be okay. And that's what gets my mind okay, that's my bit. Get in the flow.
- [47:39]
Gretchen Rubin
That's a beautiful. Try this at home. Courtney, how about you?
- [47:42]
Courtney Martin
I love that. I'm gonna squeeze in too. Cause I'm a sandwich generation. Squeeze.
- [47:47]
Gretchen Rubin
Okay. Yeah, do it.
- [47:48]
Rita Shula
Nicely done.
- [47:49]
Courtney Martin
I'm taking piano lessons with my 12 year old, which I thought I was doing for her, but it turns out I'm doing it for me. Same thing. I'm bad at it, but it's a great thing to get me back in my body. It's helping with emotional regulation, all this stuff. So piano lessons and then with my mom, happy hour on the porch. We just put out our little. I mix her little vodka tonic. We sit out there and have a drink. And that's a way to get out of spreadsheet mode and just sit with her for a drink and look at the trees.
- [48:15]
Yvette Nicole Brown
What time should I get there today?
- [48:17]
Courtney Martin
What time are we at, please? I would love it. I would love it. And bring your dad.
- [48:21]
Yvette Nicole Brown
I will.
- [48:21]
Gretchen Rubin
Yeah, that's great. Okay. And finally, Rita, how about you? What's a. Try this at home suggestion?
- [48:27]
Rita Shula
You know, I'm gonna do the two if you have. I'm squeezing it in. So again, with my kids, giving everything I have to them, but also taking the joy that they have. We do. Don't tell anybody, but we do TikTok videos. We don't post them. I don't let them post them. Oh, I love it together and it is so much fun. And we.
- [48:47]
Courtney Martin
Are you doing the dances, Rita?
- [48:49]
Rita Shula
I do, and it's really. I mean, my kids will say I'm not doing them quite as well as I'm supposed to, but they're doing it off of our music.
- [48:57]
Courtney Martin
They're jealous, Rita. They're jealous, Rita. You're probably doing it better than that.
- [49:01]
Gretchen Rubin
There's the humor and the flow and getting back into your body and the community, like that's everything all rolled up into one.
- [49:08]
Rita Shula
The other thing I do is I really, through caregiving, has taught me that I have to center myself and I have to really come to myself and what that looks like. And I do that best in nature. And I've started practicing something called. Called grounding. And I go outside in the morning before everybody starts, I take my shoes off, stand on the grass, and I feel the sun. And it really, just for five minutes, it allows me to ground myself and be able to go throughout the day and provide that care that I do for whoever needs it, namely my kids and my family.
- [49:44]
Gretchen Rubin
Just experiencing the weather, I feel like we just are constantly rushing from one place to another, but just to feel the weather, feel the ground. That's beautiful.
- [49:52]
Yvette Nicole Brown
Gretchen, I need to know, does grounding work with turf? Oh, because I always. I mean, the drought in California is a drought.
- [49:59]
Rita Shula
It might. It's on the ground. Okay.
- [50:02]
Courtney Martin
You gotta find a little patch of soil or something. You gotta. Yeah. It also reminds me of one of the great things I bet we could all attest to is dementia, despite how hard it is, does bring back awe to your person. And my dad and I used to always watch the sunset from our house. And he. One time he turned to me, he goes, who did this? And I was like, I don't know, dad. Like, that's the big question of them all. So being in awe. Being both grounded and sort of like, looking up and being in awe, I think is sort of what we're all speaking to.
- [50:36]
Gretchen Rubin
Yes. Yes. Well, thank you so much. That is it for this roundtable discussion of caregiving. Thank you to Yvette Nicole Brown, Courtney Martin, and Rita Schuler for this terrific conversation. Thanks to our producer, Chuck Reed. Thanks, everybody. This was such a wonderful conversation.
- [50:53]
Yvette Nicole Brown
Thank you, ladies.
- [50:54]
Gretchen Rubin
Thank you. Thank you.
- [50:56]
Courtney Martin
Thank you so much.
- [50:57]
Gretchen Rubin
Remember, the best time to start a happiness project is 20 years ago. The second best time is now.