Jennifer N. Levin: On Generation Care

Our transcripts are generated using a combination of speech recognition software and human editors. We do our best to achieve accuracy, but they may contain errors. If it is an option for you, we strongly encourage you to listen to the podcast audio, which includes additional emotion and emphasis not conveyed through transcription.

Jennifer Levin: Hi, it's great to talk to you.

Em: Oh, it's so good to talk to you too. I'm really, really excited to dive into this beautiful book that is so powerful, Generation Care, and talk to you a little bit about it. I wanted to just start by saying, Jennifer, that my grandmother, I'm going to share a little bit about myself, but I promise I'm not going to take over. My grandmother had Alzheimer's, and everyone in her family had Alzheimer's, and now, and my mom was her caregiver, and now my mom is in early Alzheimer's, and now I'm her caregiver. And I'm also a millennial, or a Gen X millennial cusp, but technically a millennial. And so this book really spoke to me on a cellular level at this point in what I'm dealing with with my mom, and was really encouraging, inspiring, and helpful. Like really, really helpful. So I just wanted to start by saying that, that I'm coming to this conversation with that context. And so I wanted to tell you that, and then also ask you a little bit if you would be willing to share what set you on this journey to write this particular book.

Jennifer: Sure. Yeah, I'm sorry to hear that about your family history. That is a lot to take on, because I think even when your grandmother is going through it, and your mom is the caregiver, you're still absorbing that. It's a good model for you to have, but it's also still very much like in your zeitgeist. So I'm very happy to hear that you took help from the book, but also that you said that it was, I think, to paraphrase you, uplifting, or use a lot of positive words. And I'm very happy about that, because it's a very heavy topic. It hits us emotionally in a lot of different ways it finds to punch us, but there is good to be taken out of it. And I think that the more we connect through this experience, the more it feels or can feel uplifting, unifying, and we can draw the positive from whether it's the connection we have or the caregiving that we're providing, whatever it is. So thank you for that. But what brought me to do this and to write the book was basically, having gone through this with my dad, it was the kind of experience, he had progressive supranuclear palsy, or PSP. And I've met people, families dealing with PSP where it lasts for decades, and families like mine where it's this really intense stint, the disease moves very aggressively and very quickly, and then you face end of life. So my caregiving stint was compact, and in that time dizzying and confusing and difficult, and also had very good moments because I love my dad and spending time with him. But going through that, it was very isolating. I was 32 when his disease really took a turn, and he had to be moved into a nursing home and was then in a wheelchair. And up until that time, my dad was so independent that it was shocking to think of him in a vulnerable position of having a chronic illness, of being dependent on others in that way. And so when I look at my friends, my peer group, I didn't know anybody else who was going through a similar experience at that time. I had never heard of anyone my age going through something like that. And I really didn't identify as a caregiver, not until after my father passed away. And so it was really where I thought of caregiving as a paid aid that you hire. That's a caregiver. Or an older woman who's most likely a retiree who's caring for her geriatric parents, or an aging spouse. That's a caregiver. But I'm a daughter. I'm doing what a daughter does. And so going through this experience feeling pretty alone emotionally, because I'm an only child as well. And then learning that there were so many other caregivers out there who were within my generation. I found that statistic of over 10 million millennials that were currently caregiving at the time. About a year after my dad passed, I really stumbled across the statistic. That was the first time I realized, hang on, the way it's being described, I was a caregiver. And if I was going through this, and there are so many peers, technically one in four in our generation, statistically I know somebody else. So why is no one talking about this? Why wasn't I talking about this? And then Big Mouth Me, who's a writer, was like, everyone needs to know. So I wrote an article for Cosmopolitan. I wanted it to find people my age in a place where they weren't expecting to read something about a caregiving experience, but maybe relate to my story. And like me, through that story, I realized they're also a caregiver. And at that time that that article was published, it was the kind of case where there was no resources, no support group, no dialogue around caregivers our age. And so I thought, I'm going to create it. And so I started Caregiver Collective as a Facebook group. And it's, I think, really helpful to live online because you're able to find people all over the country. We even have people all over the world in the group. So when you log on there and you're looking for support or you're looking, you know, middle of the night, this is the moment I have to pour through other people's stories to gleam what advice I can without knowing specifically what I want to ask. You can go there 24-7. You are awake on the East Coast, middle of the night. Someone on the West Coast is reading you. They're replying in real time. And it really shows you the big picture of care in our age, in our generation by doing this nationally. And so.

Em: It's been so helpful. It's like, I just want to say, like, how incredible that you started from doing all of this on your own, kind of in isolation, and then moving to understand what is missing and what is needed, which is community and to move like to so many people are going through it too. And then creating this tremendous online resource, which is huge. Like, it's huge and so helpful. Really, really helpful because it gets into like specificity of things too. Like, I'm dealing with this particular medical issue and then some other people are too. And here's what I did. Like, you know, that didn't exist. So like, thank you so much for creating that.

Jennifer: Wow. Thank you. That's super nice for you to say. And for me to hear. One of the main reasons I created it, to be honest, was not only was there a vacuum in this discussion that I felt needed to be filled, but also it was so hard to figure out how to do so many things for, you know, caring for my dad. Getting a wheelchair accessible ride. He lived in New York City, where I'm from, and trying to find a wheelchair accessible ride to take him to the doctor. We want to go to the movies. What it was like to plan that out. So much advanced planning and so much stuff that really I was just figuring out and thinking like, well, we need to get there. How am I going to get us there? You know, but then finding myself no longer a caregiver, I thought, yeah, but years I spent accumulating this information and now what? It goes nowhere. Like, I have nowhere to use this.? And so I thought I want to share it with other people. I want to help someone out, so they're not reinventing the wheel. And that was really kind of the kick in the butt to start the group. And then, of course, the connectivity. It has become and actually I shouldn't say become from the very beginning. It's been a really positive atmosphere. I have to say it's incredibly supportive. There has been no kind of weird online fighting. You know, the like awful stuff we hear about the Internet does not exist in this group. I am strict about who I allow in, meaning caregivers. Yes. But anyone who wants to advertise to us. No. But, you know, it's just people, as you say, are, you know, sharing the minutia of how do you get this done? But also people are typing, “I'm in a hospital hallway. I'm so alone. I don't know. Like, how am I going to make this decision that I need to make right now?” And people chiming in and saying, “We're here with you. You know, like, we see you.” A lot of times it's just that we see you. We hear you. Caregivers can go through the whole experience feeling like they're invisible and nobody is hearing.

Em: They're not exactly seen. There's not validation of the level of what has to happen all along the way. And it's not like one thing or two things. It's all the time, sometimes 24 hours nonstop. And, you know, you know this. Just thinking about the term caregiver, you know, growing up, I always heard the term caretaker. And it was my mom, actually, who said, it's not taking. It's I'm giving. And I want to use that language, which I thought was great. And I wonder if you could speak to a little bit about what you mean or what we mean in this book around what a caregiver is.

Jennifer: Sure. I love that. I've never heard what you just said. That's very interesting because there is a lot of different language. It's what people feel comfortable with. I know there are people in my group who say care partner. There's all sorts of terms. I use caregiver just to make it uniform. I find that when you are Googling, often caregiver gets you there. Caretaker does too, but caregiver. So when we're discussing caregiving in this context, what we're talking about is an informal family or chosen family, person who is providing care to somebody who is chronically ill, disabled, ailing, elderly, basically somebody who's medically vulnerable or physically vulnerable in some way. This includes mental health, where somebody may be dealing with a behavioral health issue, mental health issue. There are caregivers in my group who are dealing with parents specifically that are alcoholics. That is its own kind of subset of all of this. But for the purpose of this book and where discussion usually goes, it's around the chronically ill or an immediate medical emergency like a stroke, the types of things that we just see living life at any age.

Em: Yeah, thank you for explaining and exploring all of that. I really love in the book the expansion of chosen family. So many of us are, that's what our life is. That's who we are and that's what our family system is. There's so many different constellations of caregiving and extended family and chosen family and all of these things. So why the specificity of millennials? Here we are, you and me, millennials, GenX Cusp. What is specific around millennial caregiving?

Jennifer: So much. A whole book's worth. I really realized in having Caregiver Collective and reading all of the posts coming through, all of the posts coming through, all of the questions being asked, all of the experiences being shared, I started to see a trend. It didn't matter what people were dealing with in their families. It didn't matter that they were from this family and you're from this family. It all feels so personal, right? It's our family. But there were wider trends among the people our age that I didn't see reflected in other caregiver groups that were tailored more towards, let's say, the boomer generation. And when you're older and you take on care at an older age, you have most likely gone through your life and built your family, if that was what you chose, or had your career, and maybe are already retired by the time you take on care. When you're early in life, there was a lot of people, there were a lot of people who were talking about how it conflicted with their careers when they were young in their career. They didn't have much of an employment history. They didn't have personal savings because they haven't worked long enough yet. They were surviving all of the financial crises that we, if we went to college, graduated college with and have faced ever since. We see spouses that are caregiving at a very young age and that affects family planning. I was seeing people post about themselves feeling that they weren't able to date because caregiving was so all-encompassing that when they did have free time, they just didn't have the energy. They didn't know what to talk to people about, talk with people about. And then they also didn't know how to share. Well, this is a priority I have going on at home. How do you really share that with if you're 30 on a date? You feel like such an outlier. And exactly that, exactly what I described I felt, which is that your experience is not necessarily and most likely not being reflected by your peers. And you can feel really out of step, not just with your own social circle, but with your own generation. This really leads to isolation, silence around our caregiving, and also just kind of a retraction from your social group. And just change relationships that can be difficult to navigate. When you're younger, if you're caregiving for a parent, let's say, if you're not married, you don't have children, unpartnered, your parents are probably still very much the center of your family unit. And so that hits differently than when you're older and you built a family for yourself, whether that's with children, a partner, or whether it's a friend, a group, whatever that looks like. So there are so many different ways that it affects us, one as young adults and two specifically as millennials and the environment that we've grown up in.

Em: Yes, that really, I mean, it's everything resonates. Like I was reading your book. Here's me reading your book. Yep. Yep. Uh-huh. Like really out loud. It's so resonant. And I think that it's applicable, even though it is tailored to us, it really is applicable to folks of all ages in the experience of caregiving or watching people close to them in the role of caregiving and trying to understand, right, how do you have a life? How do I have a life and work and make art and have space and also take care of my mom or if you take care of your dad? And I think it's really tricky. One of my favorite moments in the book, because I'm obsessed with pop culture, is you have a Saved by the Bell component, which makes me so happy, where folks listening and watching may remember Jessie Spano in an infamous Saved by the Bell episode where she's just got so many things going on and she's like trying to get into Stanford and she's doing too much and she's dancing frenetically in her bedroom and she's like high on caffeine pills. And I think Zach there, and she's like, I'm so excited and I'm so scared. And I love doing that part just generally. And you bring it up in the book, which makes you so happy. It's such a nice millennial boop. And I think it's a great example of what we hold. I wonder if you could talk a little bit more about that and why you chose that and what it looks like for you.

Jennifer: I chose that, as you said, it is such a millennial, temple, pop culture moment that you find yourself reenacting with your friends no matter how many years later. So it's always a bit top of mind, that scene. But I really found myself repeating it to myself as I was writing the book, to the point that I thought I should just include this because it's not only that she's balancing so many hats and expected by others and by herself to excel at all of them, but also she in that episode has a caffeine pill addiction. She is turned to a nasty substance to get her through this. And when we look at the statistics of millennials who are caregiving, the stress, the levels of stress that we're reporting, combine that with the pandemic. There are so many just, I mean, really outsize influences that are creating this mental health storm within our generation as caregivers that we see things like coping mechanisms that can be alcohol or drug abuse. We're seeing the after school special version of the Jesse Spano moment. And also, how much can you hold, as you said, before you just lose it? And I found myself losing it. I don't know that regularly is fair, but it felt that way, you know, that I would just kind of feel so at the end of my rope that I couldn't hold it together anymore and have like an outburst and then be fine. And it's like, well, who's the patient in this scenario? I don't know. I'm, you know, a little scared that I'm advocating for somebody else when I'm feeling so rough. And we have to take that into account, you know, the mental health, the physical health of caregivers as individuals and also as being responsible for somebody else. It's just so much.

Em: It really is. And, you know, thank you for speaking on that. And the huge part of your book is really devoted to talking about the feelings that caregivers, like feelings and emotional states that caregivers go through, including some of the ones that, you know, aren't that we're not supposed to talk about, right? Like feeling guilty or, you know, like we're not supposed to feel pissed off, right? What you're just saying or like losing it or having outbursts because we have to be the ones to sort of keep it together. And that is such an important part of what this book does brilliantly, which is, again, help us feel seen and validated. You know, every single aspect, maybe we could talk about a few of them that you bring up in this section. It was like, oh, it was just like breathing air. Absolutely. Thank you. I'm going through this and I can, you know, as a therapist, I can go like, oh, yeah, I'm having a trauma response. I met the doctor and I'm having a trauma response. But to hear and see the actual like, oh, I'm having hyper vigilance or I'm having these specific things and they're completely normalized as part of the experience, specifically of caregiving was really powerful. So, you know, I just wanted to share that with you. And maybe we could talk about a few of them. You know, you talked a lot about loneliness and isolation and then creating the collective and how that helps. Anything else you want to say about those specifically and what you think is important for caregivers to keep in mind around loneliness and isolation?

Jennifer: Yeah, I think that, like I mentioned earlier, the loneliness and isolation at this point in our lives can feel very acute because we're not seeing ourselves reflected anywhere. We see this also really with men that are caregivers. You know, in our generation, we're almost equally along like traditional gender lines. And so, you know, when there's a guy who's taken on this role in a natural way, but one that has been traditionally gendered as a woman's work and undervalued women's work, it leads to a reluctance to identify as a caregiver and to see themselves that way. And when men have silence, they're really not connecting with other men that are also living the experience. So there are so many different ways that this goes along cultural and ethnic lines, gender lines, and just peer group, that it's so important to talk about it as much as you feel comfortable or at least seek the resources because to see yourself mirrored in somebody else's experience can be quite powerful. I do think that with this isolation, there was something, shoot, I lost my train of thought. There was something you asked me about it and I'll find it again.

Em: Yeah, well, I think the finding the community is really key. And I think for me also as an only child, I don't have siblings to kind of share some of the duties and tasks with, right? I don't have a brother to call and be like, yeah, I have to make this decision about whether or not we do this or we do that with the doctor. What do you think? What should I do in this moment? And he's a doctor and he's overwhelming me with what he's saying. It's just kind of like having to make a lot of these decisions on my own, feeling the loneliness and also the overwhelm with that. And I think you talk about in the book, like decision fatigue. Oh, goodness. Do I call this, in addition to just fatigue around all of it in general, but these specific things that when you have people to share it with, it really makes a huge difference. And so, for me, finding some friends who I know have gone through it was really helpful. And then finding the collective has been really helpful. So I think the call for community is really, really strong. And particularly in my positionality as an only child and coming from like a white, poor, working class family, but now being in a different socioeconomic background, I think growing up, there was more of us because we come together. And I think in collectivist cultures, that's also true. There's like more people to kind of do things with or have thought partners with, more people to take care of people. And some of that's just assumed. But for me, that's not the case now. And so I have had to figure out a lot of this stuff on my own and build my community around it. And so, yeah, that's a really important piece is a community. And I'm curious if we could talk a little bit about the guilt part and sort of setting boundaries. And that was, I was like, oh my gosh, are you like reading my diaries? It's like, what's happening here? Yeah, can you speak a little bit about that one?

Jennifer: Absolutely. I mean, when I talk to a lot of caregivers, whether it's to be interviewed for this book or just within the collective, the one word that I hear repeated by everybody is guilt. Everybody feels guilty for something. And it can, you feel guilty for making the decision. And then once you made the decision, you feel guilty that you didn't decide the other way. I mean, it's like there are endless ways that we choose to self-flagellate really. And in this role, that we are never doing all of it enough. We always have some excuse. And so guilt, I'll address what you're talking about, guilt and setting boundaries. Because in this book, I broached the topic of self-care, which we can get into later in the conversation if you'd like the big picture of it. But what that really looks like to me when I see how different modalities of self-care practice and exercise by caregivers is what are the practical things that you're doing for yourself to, how should I frame this? To really, to maintain your individuality as much as you can. And also just your center of gravity really. And stay healthy through it. And so one of the biggest self-care practices that you can endeavor to take on is setting boundaries and figuring out what that looks like for you. And there is inherent guilt in doing this for yourself. Even though it's not only beneficial to you, it could also be beneficial to the person you care for. They may not want to spend all day, every day with you. It might be good for them to have someone else to talk about you with. So this idea of setting boundaries, whether it's, well, I can't work five days a week because I have to be at home on this day because my mother refuses to go to the daycare program on Fridays because she would rather be home with me. And it's like, okay, well, where can we start to set limits here? Can she be cared for safely somewhere on that day, not by you, while you go to work if that's what you choose or need to do? How can we not devote everything all the time? Where can we take the space? Is it, I'm going to have a friend over who in your case, like your mom knows and you trust and she trusts to have lunch with your mom one afternoon so that you can go for a run? Where can you step away from doing all of it? And then on top of it, convince yourself it's okay. There's a therapist that is quoted, I interview her in this book, or actually this is a caregiving specialist at Sanford, my mistake, who talks about how you can experiment with this. Can she sit inside? You don't even want to step out of the house to check the mail. Well, can you take one foot outside the door? Is everything okay? Did anything burn down? Okay, now can we take two steps outside the door? How can you start to play with the idea of setting boundaries, really for your own comfort, knowing that she's safe for your own comfort? How can you start to do that so that to alleviate the guilt because you know everything is in place?

Em: Yeah, that's like incremental, right? It's like it's kind of little steps, little things to inch and sort of grow the capacity to do it, which as you said can be really healthy for everybody, everybody involved. I mean, it's really, really tricky. I think the last piece on this, and then I definitely want to talk to like, about the whole section called solutions, which I'm like, okay, great, what are they? But the last piece that really struck me is the part about grief and how you speak on ambiguous loss. And I was wondering if you could talk a little bit more about that.

Jennifer: Sure. There are a few varieties of ambiguous loss that caregivers face while caregiving. One is ambiguous loss for the life that you used to have or that you thought you would have. So, this is something, right, at our age or younger, you really see because in the case of, let's say, one caregiver who is married and she has two children with her husband who now is chronically ill and she is caregiving for him, he is really debilitated and has not been able to work. And so, they had always planned on having a third child. And she talked to me a lot about the grief she had over not having the third child. That was really planned by the two of them because they can't take that on anymore and don't know if they'll ever be able to. So, she really was grieving this idea of what her family would look like. Then you have people who, one caregiver I interviewed for the book, she had always wanted to live abroad and had gotten a job as an au pair internationally. And it was when she was abroad that her mom had a stroke and she had to come back. And now she lives with her mother because her mother can't live alone. And so, grieving this idea of who she thought she would be and reconciling that with who she is now. So, that's one form of ambiguous loss. We also have ambiguous loss with the person that we're caring for as they change. So, you mentioned Alzheimer's. And when you're dealing with neurological diseases, you could be dealing with a different attitude or behavioral state from the person that you've known your whole life. And when you're dealing with a more physical disability, like with my dad and his chronic illness, there is not being able to get up and go and do all the things that we used to do together. And there's a real grief around this. There was one caregiver in my group who I've interviewed before who talked to me about how her mom had a chronic illness and she could no longer call her for a recipe that she wanted to know how to make. And she was already grieving her mom being gone, even though her mom was still very much alive and present. And so, it's this looking forward, trying to reconcile who the person was and your relationship to each other in the past with who they are now and your relationship to each other now, especially as we're caregivers on top of daughter, sons, spouses, everything. And then projecting who they will be and what that will look like and how your relationship will change. And this is a real state of grief that you are experiencing. We're going to pull the word guilt back into it. You start feeling guilty for comparing who they are now to who they used to be and wishing you had that person back. Feeling guilty for thinking about the day that they're not going to be there anymore because they're here right now and you have them. It's grief, it's guilt, it's this tidy little package of so many emotions that we often don't know how to name. We feel guilt for feeling them. And so, hopefully by putting this term ambiguous loss to it, you can see that this is a very normative emotion. Caregivers have this in common and it looks a lot of different ways for different reasons.

Em: Beautiful. Thank you for that explanation and the journey of grief along the way as you're caregiving, not just towards end of life if someone's trajectory is that. For example, I know the trajectory of what that will be on some level. And there's grief all along the way. It could be a decade of that, of just that ambiguous loss. So thank you for saying that and explaining it and putting it the way that you did. It's really powerful.

Jennifer: While I was living with it, I had this weird thought that would strangely make me feel better when I thought about my dad having this chronic illness that was ultimately often fatal. And I would think, you know, like looking down that road and just being terrified of it. And I would think to myself, well, maybe he'll get hit by a car. Maybe we'll be out on a walk and something freak will happen and it'll just be one of those accidents we don't know. And somehow this idea that not everything is so fated, even though when you see it, you know, but somehow the idea that there could be happenstance come into play and you're still living, you're still open to the world and involved in it, somehow that strangely made me feel better when I was the one living it.

Em: Right. And it's also then not just like you and him, you and him all the way. It's like, no, there's this whole other world with all kinds of things that can happen and who knows what and nobody knows anything. Yeah, that's strangely comforting. Were there any, if you feel comfortable sharing, Jennifer, on whatever level, were there any kind of joyful or surprising sweet moments that you had along the way with your dad that comes to mind that you would be willing to share?

Jennifer: Yeah. I mean, I think just to generalize, it was just spending time with my dad. I mean, I hung out with my dad a lot and, you know, we talked to each other on the phone every day. So for me, spending more time with him wasn't so strange in the way that, you know, there are people who have more fraught relationships with the person they care for and maybe have some resentment to spending that time and energy on them. I didn't feel that way. I felt, I would say maybe like resentment as you talked about being the only child of like, it was all on me logistically and things like that. But as far as like nice things, it was really just, I mean, hanging out with him, going over to visit him, you know, being involved in his life, like, you know, also an only child, very much like center stage. So to like have that microphone as an adult, you know, you know, it was really nice just to be with him and to go to physical therapy with him and sit outside, just talk, you know, like just those moments. And, you know, it's my personal experience, but at the same time, like in studying millennials in this role, we take more gratification out of caregiving reportedly than older generations do in that we really do seem to enjoy the time and the increased intimacy that we have with the person that we're caregiving for. And it is really intimate. I mean, sometimes in a very uncomfortable way, but it's also, you know, you're doing things, I'm tying my dad's shoe, you know, like that is not something that would have happened if he had been still, you know, you know, fully physically healthy. So it is this like privilege to have this job in a way, because you are taking on a different view of a human and just of life and how we're all connected to each other. It really makes me see differently, honestly, you know, that when you start to see that level of care, and it's not just you doing this, you start to see it all around you. And the things that we do for each other, it changed a lot of my outlook.

Em: Beautiful. Yeah, thank you for sharing that. I'm really, I resonate with that too. I love hanging out with my mom right now. It's like, it's so sweet, you know, there's really hard moments, but you know, she doesn't know what day or time it is, but she can tell me a story from when she was a kid, and she got puppies and played with the puppies and one of the puppies almost ran away, whatever. And she can tell, you know, conjure that. So it's interesting how I find her now in her younger parts and her memories. And I can be present with that in the present moment with her, even though, right, she doesn't know what day or time it is ever. It's sort of like, it's sort of like, that's kind of cool. Like, who cares what day and time, you know what I mean? If you don't need to know that, and someone can help support you with where you need to go to your appointments and stuff. No, there's some kind of strange psychological freedom and not having to hold on to those regimented ways that we organize things in the world. I mean, just finding those those kind of fun, you know, joys in the midst of it also being hard. So what are you going to say?

Jennifer: That's true. I mean, you know, when you think about this so much of the time that we spend with somebody in this experience, you're kind of removing, I have to run to work, I have to do this, I'm squeezing you in between my lunch and my dinner, you know, like all this stuff. And you're devoted in that moment to being there with this person. And so the presence that you have to share stories like that to kind of eliminate, you know, like the regular day to day noise, and just be super present and be able to talk about nice stories and just talk. I have that too, but I love that's so interesting that you remove a literal date and time from it is really nice.

Em: Yeah, and like in laughing, you know, and that's one of the things in your the last section of your book around like, what helps what what do we need here. And you have some really amazing also policy calls, which is awesome. But one of the things is like, yeah, we need to be able to laugh and be creative and express ourselves. And go to therapy. I love it. You're just like, go to therapy. Everyone said go to therapy. And yes, and not just therapy for caregivers, but also other kinds of therapy for the folks that were caregiving, which I really, really appreciate it. And so do you want to talk about some of the other things that you mentioned in the book that we need?

Jennifer: Sure. I'm gonna highlight one. And to start at least. And that is right. Everybody said to me, what helps? Therapy. The other thing that when I see people whose stress has been somewhat alleviated, who had kind of figured it out as they went a little bit more quickly, and it wasn't so it was of course stressful, because caregiving, even with the biggest handhold will be stressful. It's an emotional experience. It's stressful. But, when I look at people who seem to be riding that wave a little bit more smoothly, and asking them like, what's going on? How are you doing this? This idea of having a case manager or a care manager, this can be phrased a few different ways. Or a geriatric care manager, it's all like what shows up in Google, really. That is, as one caregiver termed it, the quarterback of care. This is someone who is a professional, who is in an ideal circumstance attuned to the disease or chronic illness or disability that your family member has, and knows how to apply for different health insurance benefits, knows what's available, knows the assistance programs that you may be eligible for, how to apply for them, all the things that we don't even know what to ask for. They have a toolkit full of it, and they help you, and they navigate you, they stay with you through this process, and help you. How you said, when you need to make tough decisions, you don't have a sibling to call. Same with me. They help you make those decisions because they know they're not going to make the decision for you, of course not, but they can talk through it with you because they understand what it means, they know the person that you're caregiving for, they have a sense of who they are, and what that person's wishes would be. All of the things that you weigh as the caregiver, they're with you on that, and they're a professional in that circumstance. This is something that I say in the book sounds expensive. Well, it is. This is something that a person that you can hire, and it is quite expensive, it's a paid service, and you're paying for somebody's expertise and time, but there are organizations that offer this for free, whether it's an initial consultation, whether it's an availability that you can contact them on an as-needed basis, and there is an actual pilot program. I wrote this part so long ago. I believe that it is with Alzheimer's patients. I need to revisit this information, but it's basically through Medicaid, I believe, that they have this clinical trial, like a trial program of families who are assigned a 24-7 case manager to be with them through the process, and it has been successful in smaller trials. They've now kind of like within specific hospital systems, they're now expanding it into this kind of like a bit of a broader trial, and the idea, right, in like my greatest dreams would be that this is rolled out nationally, that this is a benefit you can get through your insurance program because this would help so many things. This would help us stress-wise, logistically. I mean, there are a thousand different things that this would assist with, but also this person in the examples that I've spoken to people with and read about professional organizations that provide this, if you are unable to go to a doctor's appointment, that person will pitch in for you and take your person to the doctor's appointment and be a presence there to speak on your behalf. I mean, it's really like having expertise in a family member, and so imagine if this is someone we had access to, how many people would be able to stay in the workforce, not have to miss work because of doctor's appointments, because they're trying to figure it out as they go, because they're on the phone all day with Medicare trying to figure out what insurance benefits, and because of that they missed work that day. You know, just the amounts of ways that this would help us as a society and create an actual care infrastructure that we are lacking in this country, I mean, that would be mind-blowing.

Em: Absolutely, yes, yes, yes, and you know, in my experience, I have had some help from social workers through different places, but they're limited just in terms of how they're stretched. It's not about whether or not they're great social workers, they are, but having something like this would change so many people's lives, and I love that exists and that there's a trial happening, and also that we can dream and imagine and envision it. You know, sometimes I feel like we can get kind of clamped down with just like, well, this is what we have, so we have to deal with it, and it's like, no, what if we had, and you say like paid family leave as a national policy, like yes, yeah, I need, I need to

Jennifer: Every other country on this planet.

Em: Well, that's what I was going to ask you with some of these, and maybe we could talk about a few more, but you know, where are some of these things otherwise happening, and you know, how, how are they going? These, you know, there's some of the policy things that you mentioned, care benefits for employers, counseling, caregiver training, and centralized resources, yeah, I need help, I need to know where things are, these kinds of things, and then of course, you talk about addressing systemic changes that have to happen, you know, in US culture that feed down into this, you know, like systemic oppression and inequities and sexism, racism, classism, homophobia, transphobia, etc., because it's all part of how the systems work or don't work. But yeah, like anything else you want to talk about on this list, and also where is this happening, and how can we, how can we do what they're doing?

Jennifer: Right. I would say, okay, like to talk about like caregiver training, just to touch on that, these types of programs, what I was hearing back from experts in this field is so often these supports that we could really use, whether it's caregiver intervention in the hospital system, like a doctor calling you out and saying, you don't seem so good, you seem frazzled, they identify to themselves that you could be at risk of severe stress, PTSD, different emotional health catastrophes at a certain point, and often these interceptions aren't existing because they don't know who to bill for insurance. It comes down to who pays for it. We got to figure that out. You know, as you said, which is what I spend so much time thinking about is we've really just come to accept things as they are, and we try to figure out, well, what's the best way to navigate this? How do I do it? Often too, when you're the caregiver, you can't think about, you know, what would an ideal world look like? You're busy trying to figure out this one. So, you know, how can we reimagine this? Like, what are the big picture things that we could have? Because, as you mentioned, other people have somewhere else, things like paid family leave. I mean, we're one of very, very few nations on the entire planet not to have a paid family leave policy. And for caregiving, we also have to be specific to say paid family leave inclusive of family caregiving because often the discussion gets relegated just to parental leave. And people may or may not assume that family caregiving in this context is included in that, right? And so, you know, just as a small comparison, not in paid family leave, but in care in another country, like I live in Germany half the time, right? And when I'm applying for health insurance benefits there, I was flabbergasted to find that I have to have a certain amount of money going into this pool for my future care, if and when I ever need it. And so, as part of your insurance, it is by law, you have to be putting money the way we put money into social security. There, you're putting money into a pension. You're also putting money into care services for your future. I mean, and that is insurance dependent, not necessarily employer dependent because I'm insured as a freelancer on my own. So, you know, here we think about things so much as health care benefits. We think of health care as a benefit. We think of family care as a benefit. This is our society. This is humanity. These should be rights. We should have a right to care for our family, you know? So, how do we make that happen? And when you look at things like paid family leave, like right now, we're really dependent the same way that parental leave started, by starting with at the corporate level, by starting within businesses and corporations to set the tone and to prove that this can work before it becomes a national thing. That's just the way it is, is that the corporations are really leading the way on this. Not all of them, but some of them. And the ones that do, and that have been studied, they are finding a return on investment. I mean, when you allow employee retention by, and keeping, you know, the intellect of your company present by allowing for remote work, flexible work, caregiver services, someone on staff there who can help you out with caregiving programs and kind of like help you figure that out for your own family. And then also paid leave. I mean, this keeps people working. It keeps people in the workplace and in their careers, you know, and not having to leave the workforce. It's better for our economy. So, yeah, what we have going on doesn't make sense. It just doesn't. So, it's really a matter of saying enough. We have to figure this out for the better good. Like our future should not have to look like our present and our past.

Em: Absolutely. Absolutely. And again, it is powerful to hear and read about and imagine and envision what it could look like instead of staying within the parameters of what we have. And like you said, when we're caregiving, we can't think outside of that. A lot of us, I'll speak for myself. When I'm caregiving, I can't imagine something different. I'm just, I'm in survival mode. Right? And so, you know, you kind of having gone through this and now in this place of like imagining and envisioning, it's incredible. It's incredible. And what would you say, you know, we, individuals, caregivers, and otherwise, what would you recommend that we do in moving toward, you know, having this vision come to life?

Jennifer: That's a good question. I mean, I think it's the taking the risk to see beyond your circumstance and to see the big picture of this, right? Which is what I'm trying to do in this book of like, how many of us are doing this? What does this look like? And effectively, you are a healthcare worker. I mean, you could be replaced, so to speak, in the day to day logistics stuff, by a paid professional to do your job. But you have taken it on. Whether you have a paid aid, a nursing home that's providing your family members care, or whatever that looks like, you are still going to be a caregiver. You are not dropping out and disappearing. It would just look different. You'd be able to have a little bit more time to maintain your relationship to your mom as her daughter, you know, or, you know, however you identify yourself to the person that you're caregiving for. So, we are not looking to stop caring about family. We're not looking to stop caring about, you know, taking care of the person. But we don't want to do all of it all of the time. And so, how can we create that the healthcare system as it stands has created us as the care infrastructure, civilians, just citizens, right? To fill in because they are taking advantage, frankly, of our best instincts. How do we say this isn't right? We need a healthcare system with a care infrastructure and support. And, you know, really start to call for that in the different ways, identifying these things like paid family leave, all of the different things, and going at it, whether it's piece by piece until we get the picture, you know, but really hounding your representatives. Because right now we're seeing proposals to cut a lot of Medicare and Medicaid, which is not only going to affect the beneficiaries, the direct people insured by these programs, but going to affect the caregivers, millions of us, especially the way that care for, the elderly, the chronically ill, has been structured where you are oftentimes pushed into Medicaid by paying down your assets and effectively going broke until you're Medicaid eligible to be paying for the care that you need. So, you know, how can we rally to make sure that representatives are representing us and making sure that these things stay put? So I would just say it's about getting out there with your story, advocating, pushing your elected officials to do what's best for your community, your family, and our country.

Em: Gorgeous. Gorgeous. Love that. Yes, Jennifer. Yes, yes, yes. When you were going through your process with your dad, what were some of the things that helped you talk about it in the book, maintain your identity outside of caregiving, and just what helped nourish and feed your spirit as you were going along? If you're comfortable sharing some of those things. Yeah.

Jennifer: Yeah, I would say that because I was a long-distance caregiver, I was in moments able to give myself amnesia, where I could try to go out with friends in California, blue skies, and try to focus on that. Although in the back of my mind is always my dad, and as things got more intense or in moments that they were, I was kind of looking around at my friends going, what are you complaining about? This is nothing. Although it was just age-appropriate topics that were stressing them out. And for me, I was like, this is silly compared to what my dad is dealing with. But I would say that finding these moments of reprieve as you can take them, whether it's with friends or in a workout class, wherever you can kind of lose yourself in that moment. For me, what I really did and what, I really see this in retrospect, really heavily leaned on was exercising. I mean, it's powerful in a lot of ways for our brains, our bodies. And to me, it made a difference to feel strong, like to really make my body strong. It had an emotional effect on me. It was also something I could control. So much of caregiving and chronic illness and disease feels completely out of our control, because often it is, it just is. And we're doing as much as we can to mitigate what we can. And things that I could really control. I'm going to exercise for 50 minutes. I'm going to do this workout. I know that if I do this, I get this result. And I really poured myself into that. That really helped me. And so trying to take these moments where you can. I know that there are people that I interview for my book for them. Something very powerful, I just wish I could have taken on myself, was to let go of this idea of perfection. Don't let perfect get in the way of good and done. And so just trying to be less hard on yourself and trying not to feel all of these feelings of guilt like we talked about, that you didn't do it perfectly, that you didn't do it all.

Em: Jennifer, get out of my diaries. What is happening? Everything is so resonant. Yeah, it's just so out of control. What are the things you can control? And feeling physically strong, and also for me, mentally as strong as I can, going to my own therapy, my Reiki, all of my things. And feeling some guilt about doing them too, but doing them nonetheless, because I know it's what I need to do to be able to do what I need to do. So yeah, those are great. Those are great examples. I'm curious about, and I know we're coming towards the end, but I'm curious if through the process of talking to everybody you talk to and writing this book, how, if at all, your relationship to and connection with your experiences with your dad maybe changed or shifted or transformed in the process or not, but I'm curious about that for you.

Jenifer: My relationship to my dad or relationships in general?

Em: Well, it could be relationships in general, but I was thinking more about your experience with him being the thing that set you on this journey, and now you're at a journey that's ended in this tremendously beautiful and wonderful book, and just how you're thinking about your experiences with him, if they've transformed, if they've morphed and evolved through this whole massive journey that you've been on.

Jennifer: I would say, I mean, the way that things transformed with him really were a bit difficult in some moments because I was assuming a very adult responsibility at an age when I was really used to caring only for myself and seeing that as a huge accomplishment, and so this role reversal of being the authority figure, so to speak, when I very much still deferred to my dad for decision making in my own life was uncomfortable, and I would say too that I wanted to still ask his advice on everything and get his opinion, whether I took it or not, and still very much be the daughter looking to her dad, and then found that because his voice was weakened, he couldn't speak as well, that I was kind of censoring my questions a little bit. I was picking and choosing, well, which ones are the most important ones I really need to ask him, because I knew that he didn't have the energy for all of it and that our conversations were slower. I would say that with the slowness of the disease was forced patience that, I mean, we're New Yorkers, my dad, my mom, me, we're all highly impatient people, and we really were forced to take the moments as they come and see those moments as wins and be happy about them because they were happy, and so I think that there is, as you talked about, when time stops existing in the ways that we're used to, these very nice sweet moments, but I feel like my relationship with my dad was always very much like that. We like to do things together, we genuinely liked each other and to spend time together, so that didn't change so much. It only maybe deepened in certain ways, but I think that the biggest transformation I saw in relationships was really what I look for in other people now, because knowing what this time of life could look like, no matter how old the care recipient is, but this care period of your life, and what you would devote to somebody else, and seeing, knowing that I'm the person who does what I say I'm going to do and that I'm loyal and I'm devoted, and if you're with me, I'm with you, and I know that, and particularly as you get older, you meet people in your life who are not willing to do that same thing, or who might say that they are, but when push comes to shove, disappear, they can't handle it, or whatever their personal reasons, let them figure that out with a therapist, but I really look for that now, as knowing what I'll give, if I'm going to choose this person to give it to, are they going to reciprocate, and that is now a priority for me, whereas before it was kind of a more of like a vague notion.

Em: Wonderful. Jennifer, I'm wondering if there's anything else that you want to share about your book, about how people can find you. And maybe like something that was like a surprise or sparkly, or something that you think about that you learned in doing the book. That's like a little like, ooh, I really loved this. I loved knowing this.

Jennifer: This is a strange one.

Em: I love it.

Jennifer: Like a little moment that I had. I mean, I loved working on this book because I really enjoy talking to the people that I interviewed for this book. There was like, just a bunch of people I've come to know through my group and then got to know even more these personal interviews we did for this. And then also speaking to people outside of my group about this as well. And seeing that through line between all of us. The one thing I would say is that like, in these like guilty, weird thoughts that you have while you're caregiving, there was one, I don't remember if I had it as a caregiver or after my dad passed away. I think it was just in the immediate aftermath when I was just in such grief. It was just so rough. And I really thought, I almost want to get hit by a car so that people can see how broken I feel. Because when you're feeling it and you're composing yourself, it's hard to express just how devastated you feel. And I never shared this. It was just this strange thought you have is all these thoughts can be at certain points in this process. And while I was interviewing somebody, she said to me, I fantasized about being hit by a truck. And she was like, I just wanted a reprieve from care for a moment and to lay in a bed and just have people help me. And I didn't have to be the one. And I completely understood her in that moment. And I can also say, Oh my God, I had the same thought. That only when you talk about these things and say them out loud, you realize you're not this morbid freak. There are many of us having these dark thoughts. Nothing will come of it other than these dark moments we face in little blips. But they're honest.

Em: Yeah. And that makes perfect sense, right? Of course we want to reprieve. Oh, that was great, Jennifer. So everyone, Generation Care, the greatest, so helpful, so beautiful. Jennifer, where can we get this book and where can we find you?

Jennifer: You can find the book everywhere books are sold. You can find the audiobook anywhere you download and stream audiobooks. I narrate the audio book, which was pretty fun. It was difficult and a lot of crying, but it was fun overall. And you can find me. I'm mostly on Instagram @jennifernlevin or I'm on blue sky social @classiclevin. And that's classic L-E-V-I-N and J-E-N-N-I-F-E-R-N-L-E-V-I-N on Instagram. And feel free to find me there.

Em: And also the Caregiver Collective Facebook group. This was just magical. Thank you so much, Jennifer. Really appreciate everything.

Jennifer: That was so great talking to you about this. Thank you so much for sharing your own experience.

Em: Absolutely.

Thank you for listening to the CIIS Public Programs Podcast. Our talks and conversations are presented live in San Francisco, California. We recognize that our university’s building in San Francisco occupies traditional, unceded Ramaytush Ohlone lands. If you are interested in learning more about native lands, languages, and territories, the website native-land.ca is a helpful resource for you to learn about and acknowledge the Indigenous land where you live. Podcast production is supervised by Kirstin Van Cleef at CIIS Public Programs. Audio production is supervised by Lyle Barrere at Desired Effect. The CIIS Public Programs team includes Kyle DeMedio, Alex Elliott, Emlyn Guiney, Jason McArthur, and Patty Pforte. CIIS Public Programs commits to use our in-person and online platforms to uplift the stories and teachings of Black, Indigenous, and other people of color; those in the LGBTQIA+ community; and all those whose lives emerge from the intersections of multiple identities.