Ep 482: The Care Crisis: What Every Woman Needs To Know
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So I would say with things like medical proxy, with things like a living will, finances, to know passwords to different bank accounts, or to know what utilities, who are the companies that you have, just all these basic things, to have that organized and to have these conversations before the conversation gets too loaded with emotion. Hey everyone, thanks so much for joining me today on Her Money. Today we are talking about something that

rarely makes it to our highlight reels, but actually quietly and profoundly shapes our lives. We're talking about caregiving.

And this conversation could not be more timely because right now we are in the middle of what our friends at the Alliance for Lifetime Income are calling peak 65, the period between 2024 and 2027 when a record number of Americans are going to turn 65. And they're going to keep on going.

which means more and more families, maybe yours, are going to find themselves stepping into caregiving roles, often without a roadmap, resources, or the recognition that they deserve. My guest today, Jennifer Levin, knows exactly what that feels like.

At just 32, she became a full-time caregiver for her dad, taking time away from a career she loved, moving halfway across the country to be there for him. She has written about the experience in her powerful new book, Generation Care, The New Culture of Caregiving. It is

a lifeline for anyone navigating care, especially younger caregivers, because as Jennifer writes,

No one is naming this problem, talking about how it feels or offering resources to ease the pressure of millennial caregiver burnout. So we're going to dig into it, the rage, the resilience, and the reforms that are urgently needed to make caregiving more sustainable in America. Jennifer, welcome. Thanks so much for being here. Thank you for having me. I want to

I want to talk about you first. I want to talk about your experience and your personal story. And then we'll talk about this as a systemic problem and get to some resources for people who are heading down the same road that you were or maybe find themselves on it right now. As I said a couple of minutes ago, your story began at age 32, just as your life and career in L.A. began.

were hitting a high point. At that point, you said that the life that you built for yourself was quote unquote, "layered with consuming responsibility." You managed Medicare, you dipped into your own savings to hire a private nurse's aide, you became your dad's health care proxy. Were you ready for this? Is there any way that people can be ready for this?

I will say I was absolutely not ready for it. I think like most people my age, it's kind of trial by fire. When you're 32, you're still identity building in many ways and building your own life and figuring out health insurance for yourself, frankly, which is already confusing. No experience with Medicare or long-term care or geriatric care. That was all completely new. So

When I hear about other people who are going through this, particularly at a younger age like I was, my advice to prepare yourself for it is to really find support in a community of other people your age who are going through it.

One, because you're going to need emotional support. But two, to have somebody else modeling the experience of what you're going through. You know, there's no handbook for this. And there's no list of things of every specificity that your family is going to need to address. But when you can look at somebody else's experience, you can say, oh, wait a minute, that sounds like something I should pay attention to. Oh, I didn't know this was available. And it gives you a list of resources to act from.

One of the decisions that you made was not to step out of the workforce. There comes a point in many caregiving journeys when that's the choice. Do I step out and take care of my relative, my loved one? Or do I try to stay in the workforce and hire somebody to help me? You did the latter. Why did you decide to do that?

I would say that it wasn't even a choice. It was so ingrained in me to continue building my career. And I knew that upending my own life in every significant way is not something that my dad wanted. He may have even expressed that. I can't quite be sure, but I know that for a fact is that he would not want me to give up my life to take care of him.

Other people feel very differently when it comes to family care and they only trust family. But for me, it wasn't a choice. It was, I've worked hard to get where I am. Keep going. What was the choice is what that looked like. So,

So at the time that my dad was first diagnosed, I was working in TV production in a writer's room. And those hours, they go, I mean, you don't know when you show up in the morning what time you're going to be there until. And when they say, grab the menu for dinner, you just think, oh, God. But you really have no control over your own life when you're in the position that I was in, not having much seniority. It's as long as my bosses were there, I was there.

So I really thought at a certain point, this is not how I want my life to look, knowing that my father and my family and the people in my life are such a priority. I don't want to devote every waking moment to only this one thing in my life. I want space for other things. And so I did make the decision to start working for myself.

which was not easy. I think that it sounds very empowering and it can be when you begin, but

You're letting go of a regular paycheck and health insurance benefits in the way that you're used to receiving them. There's a lot of risk involved in that, but it allowed me flexibility to go back and forth as I needed to and as I wanted to just to be there with him because I loved my dad. We spent a lot of time together when he was healthy. So of course, when he needs help, I'm going to be there just as much to help him, but really just to spend time with him.

One of the things that I found interesting about your story was that you said you actually didn't think of yourself as a caregiver until a year after he passed, at which point you discovered that there were actually 10 million millennials in the U.S. already caring for family members like you were. Why do you think it's so tough to identify?

I'll say that I first didn't identify because I didn't know what a caregiver was. I thought a caregiver was a paid nurse's aide or the media representation of caregivers that I grew up with, which was an older woman who was dealing with an even older geriatric parent or an aging spouse.

who was my age dealing with a chronically ill father that just really didn't resonate with me as a caregiver position. It wasn't part of my discourse. So it was after I read that statistic, which really broke down things

who and what a caregiver is, the types of responsibilities, this idea that you don't necessarily live in. You could be a long-distance caregiver, but you're assuming responsibility for the health and well-being of somebody else. And I thought, oh, my God, that is what I've been doing this entire time.

And once I recognize to put that title to myself, all of these resources can become available to you once you identify as a caregiver. But a lot of people don't for that reason of being naive as to what a caregiver is and our typical representation, even today, of what that looks like.

And so if you're a younger male, let's say, and you don't have that modeled to reflect back to your experience, you don't think of yourself as a caregiver necessarily. And it's not anything that any of my peers were going through for us to talk about. So I'm my dad's daughter.

I'm doing daughterly things. I had aged into a family responsibility that took on a new level. That's really how I thought of it. So there's this misunderstanding of whom a caregiver is, but there's also stigma around it. There are people who understand what a caregiver is, but don't want to apply the title to themselves.

because maybe they think it sounds too clinical and what they're doing is a family role or maybe they don't want to identify as a caregiver because that would preclude other identity levels that they have for themselves, like maybe their profession or that they're a parent or that they're a single woman out dating.

Also, a lot of caregivers face stigma, whether that's in the employment sector in which you may have discrimination for being a caregiver or whether it's in a social scenario where maybe your friends stop inviting you out because they think that you're not available to them and they don't quite understand why.

So if you are listening and this sounds familiar, maybe this is the thing that gets you to identify. If not, what's the moment where you know? Like how would you look at somebody and say, oh yeah, that's a caregiver?

I think just by observing or hearing the responsibilities that they've taken on, because it can look like such a spectrum, which is why when we look at statistics of caregiving today versus five years ago, the statistics have jumped just because we've redefined what caregiving really is and made it more inclusive to individuals.

How much responsibility can really take up your life even in ways that you think aren't all consuming, but you realize when you lay it out on paper, it really are. Such as just taking a managerial role. If you have to help somebody move out of their home and into a nursing home, and you're the one responsible for the move, you're the one selecting the nursing home, those are caregiving responsibilities. Sure.

Sure, absolutely. You suggested that people going through this find support, find a community. Where do you look? First, I built one because I didn't find one for anybody my age. I built Caregiver Collective, which is an online support group, which started for millennials but has expanded to basically anyone who feels like they're taking on care younger than expected. But I would say start with a community.

start locally and then look nationally at the illness or disease that you're dealing with. So locally, you may find support groups through a local hospital or through community groups or faith-based organizations. Nationally, you can look to places like ACI,

HFC, which helps out caregivers dealing with Alzheimer's in their family. You know, when you start to look at maybe cancer organizations or Parkinson's organizations, they may have something available online or even local chapters that you can attend in person if you want to that can help guide you through. And as you make these connections in different places, you'll learn more resources and you'll see where you fit in best.

It's not just guiding people through the tactical challenges. It's guiding through the emotions. Some of the people that you interview in the book talk about their rage, their grief, their stress. How did you deal with those things in your own life? And how do you suggest that people deal with what they're going through in that way?

I'll start with how I dealt with it, which was not well. I write in the book that I often experienced intense anger. And this would come out in just different areas of my life, like road rage, you know, things that weren't caregiving related, but really were indicative of the stress that I was under and the emotional weight, not really naming what I was feeling and not really allowing myself to sit with it.

And so it, you know, being bottled up in my body and then coming out in other ways that weren't healthy. So I remember a friend at the time said to me, you know, you're just so angry about all of this. And I thought, what is she talking about? No, I'm not. Like, I'm sad. It's hard, but I'm not angry. And then, you know, I realized years later that she was observing something that she didn't quite understand, but I was living and I didn't understand. And so for somebody who's

Dealing with this, I would say, one, seek out professional help, which I eventually did in a therapist. That really helped me begin to understand what I was going through and also just naming the emotions, which is why I devote a large part of the book to breaking down the emotions that I hear caregivers most often express, like rage, like grief.

And naming them and then saying, here's how this can look in your life that is really typical of caregivers and caregivers our age. Maybe like hypervigilance, which is that feeling you have of always waiting for the other shoe to drop. So you're on constant high alert for threat.

I think a lot of us live with that in today's society in more dormant ways. But when you're a caregiver, you're really feeling this at such a heightened degree because you are directly responsible for the health and well-being of somebody. And so beginning to name these emotions, recognizing them, categorizing them, for me, it helps to intellectualize that. And so when it comes up, I can think to myself, I know what this is.

what are the tools that I've picked up through therapy or through different online resources of how to deal with it? Like for me, I exercised like crazy because it was something that I could control. You know, if I knew if I exercise this amount, this,

This is what my body would, you know, have as a result. And that felt really good to me. And also just to feel strong felt really important to me. It helped me mentally to think of myself that way. And so once you have these tools, you can fall back on them in more difficult times. I can totally relate. I don't think it's any coincidence that in the year after my mother passed away, I ran a marathon.

We are going to take a very quick break. When we come back, we're going to get into the finances of caregiving, why our health care system relies on unpaid care, and what can actually help caregivers along the way. We are back in a sec.

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And we're back with Jennifer Levin, author of Generation Care. All right, let's talk about what this means in terms of millennials' broader financial picture. You write that on average, in addition to their full-time jobs, millennials provide enough hours of unpaid care per week, approximately 25, for it to be considered a part-time job and

That's all happening while millennial caregivers are already earning below the national median and are already financially strained. What advice do you have for dealing with the finances? The advice I have is to really lay out what's difficult for you.

Is it that you are also raising children and you have to pay for child care while you're providing elder care? Is it that the utilities of the person you care for are exorbitant and you're the one who needs to help supplement that cost? Is it groceries? Is it doctors and pharmaceutical costs? Really, what are all of the things, if you lay out a budget, that are having you feeling stressed? And then caregiving is really about being resourceful.

How can you find ways to help you supplement those things? So when it comes to the cost of, let's say, a day program or transportation costs, is your person covered by Medicaid, let's say, which as of today, at least, finances a lot of those programs. Is that something that they can utilize where maybe you've been paying for private transportation, but like in New York City, we have Accessoride and that's something that's supplemented.

Is it that when you reach out to, let's say, your local Office of the Aging, which people really underestimate as a resource and can be really, really helpful to at least point you in the right direction of other resources?

Are there programs that maybe if the person you care for is financially insecure, they help supplement utility costs? There are really interesting ways to get creative around things that are not direct care costs, but costs that you take on as a result of caregiving. You dig into the fact that people are using the FMLA, the Family Medical Leave Act, to step away from work.

temporarily. What does that actually look like in real life? What does it do to your career? I know there's a lot of fear and stigma around that as well. That's true. FMLA provides 12 weeks of unpaid leave for care. You don't have to take that all at once. You can take it piecemeal or you could take it all at once. You work that out with your employer.

The thing about FMLA is that not everybody is eligible. So you need to figure out, one, are you eligible? And two, what does that look like as far as costs?

Is it going to cost you money to leave during those days or weeks or months that you take away? There are people who work with their employer to take that time of FMLA in conjunction with, let's say, paid vacation days that they've accrued or paid sick days so that they can still receive pay through those days that they're away. But not everybody can do that. I also had a caregiver in my group who was 23. Her father had a stroke.

She was then in the hospital with him for weeks. And she basically was told by her boss, you know, at a small law firm that if you continue this, you're not going to have a job anymore. She was not covered by FMLA because there were less than 50 employees at this business. So...

It covers a lot of people, but it doesn't cover everyone. So if you are able to take it, what I've seen from caregivers who really benefited from it are people who were in a position in their workplace where they felt comfortable taking that time away.

They also were suffering from severe burnout that was becoming a medical issue for themselves. So it was not an easy choice to take it, but they really saw themselves spiraling in a really negative direction and knew that in order to

to preserve their own well-being, they had to take the time off because instead of straddling two major responsibilities in their life, it was easier, so to speak, just to focus on one for a while. And when I speak to these caregivers after they've taken FMLA and I ask them, you know, what would you tell somebody in that position? They tell me they wish they had done it earlier.

I think that's really a decision that everybody makes depending on your finances and depending on whether you can get that leave paid or not. Now that you have come through the other side, are there a couple of pieces of advice that you have for people who are either going through it or know that they might go through it at some point? I've always felt that

we don't have enough insight into our parents' financial lives and what they want and that avoiding surprises, if we can get ourselves to the point where we can understand what's on the other side, is a huge benefit. But what do you see being the steps that people should be taking that we're not taking?

I would say the first steps to be proactive would be getting the paperwork in order and finding out what your parent, if it's a parent that you anticipate caring for, already has in place and what they don't.

And so, you know, in the case of my family, me becoming my dad's medical proxy, that conversation was had at a very loaded time because he already was diagnosed with a disease that we knew was most likely fatal. And even with that in mind, that's...

that he needed somebody who loved him and cared about him and knew his wishes to be in place to take over in the event that he couldn't make his own decisions. He still did not want to talk about it at all. And then when my mom would bring it up with me, I didn't want to talk about it because the idea was so morbid and it was so sad. And it was really my mom that pushed him to say, you better do this and do it today because you're going to be really sorry if you don't

So I would say with things like medical proxy, with things like a living will, finances, to know passwords to different bank accounts or to know what utilities, where are the companies that you have, just all these basic things to have that organized and to have these conversations before the conversation gets too loaded with emotion.

And for that, to bring in an elder care attorney, one that's licensed for your state so they know the particulars of the laws in your state, they can really help you sort through what are just the basic paperwork that you should have in place before this becomes a really big deal, if you're able to think about it so far ahead. And then later on, I would say just really, you can't anticipate anything.

that someone's going to get a particular disease because it may not even be a parent. It may be a spouse as I'm seeing in my group. You just don't know what's going to happen. But what I have seen that I find really interesting are people who were able to manage in the case of being like a multi-generational caregiver, raising small children. This one woman I talked to was in her early 30s, also caring for her chronically ill spouse who had long COVID.

And she told me that one of the things that has helped her is that even before he became ill, she decided to dial back her work schedule to work an 80% schedule and negotiate that with employers so that she didn't lose her career track, but she was able to have more time with her children.

When the event showed up that her husband became chronically ill, that was already in place for her. And so while the balancing act is incredibly difficult and she's dealing with a set of emotions that I can't fathom, she does have a structure in her life that allows her a little bit more time for family care. And so I think re-envisioning your life and what that looks like is really helpful. Yeah.

It sounds like your group, as you keep referring to it, is a really helpful place for people who are going through this. How do we access it? What is it called? Where do we find it? So this group is on Facebook. It's called Caregiver Collective. And I require that you fill out just a short little survey at the beginning so that I can tell that you're not a bot and you're not someone who's trying to advertise to our group.

and that you will take the sanctity of the group seriously once you join. And really, I found that having an online support group allows people to join from all over the country, all different situations. And with care, you often don't have control of your schedule. You can sign on there 24-7 and someone is awake somewhere. So it's called Caregiver Collective. Yeah.

We do the same sort of screening when people want to join the Her Money Facebook group because we don't want the bots either. Jennifer Levin, the book is Generation Care. Thank you for writing it. Thank you for sharing your story. It is such a tough road and so many of us are going to go through it at one point or another. So we appreciate you being here. Thank you. Thank you so much. We're going to take a quick break, but don't go anywhere because when we come back, I've got something really exciting to share.

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We are back and I'm thrilled to let you in on something we've been looking forward to, the brand new season of How She Does It. How She Does It is hosted by my friend, powerhouse investor and all-around trailblazer Karen Feinerman. And the first episode of the new season is dropping next week on July 8th.

This season, Karen's sitting down with some amazing women, leaders, entrepreneurs, creatives to find out how they juggle their careers, their finances, their families, and everything life throws at them with grit, grace, and wisdom. New episodes drop every Tuesday, so make sure you're subscribed to How She Does It on Apple Podcasts or wherever you love to listen.

Now here's your sneak peek at what's coming. I think you're going to love it.

Hi, everyone. I'm Karen Feinerman, and I'm delighted to share with you that there's a new season of my podcast, How She Does It. You may have seen me on CNBC. I'm a long-term Wall Street investor, a mom of four, and a big WNBA fan. My life is pretty full, just like yours. So I really enjoy taking the time to sit down with dynamic women leaders and literally ask them, how did they do it, both in their careers and their personal lives?

First up, my chat with Jenna Bush Hager, who not only built a career as a host of Today, but as a major player behind the scenes in the publishing world. You have a production company and a publishing imprint under your Thousand Voices banner. So tell me, what are you cooking up for everyone? Yeah.

Well, the imprint is super exciting. So we're looking for emerging voices. And we right now have eight books that we're publishing. It's a ton of work. And I don't even really register it because I'm so obsessed with it that it's just so much fun. Next, a preview from my conversation with Open Table CEO Debbie Sue. So I heard a story that on your first date with your husband, you told him you wanted to rule the world. Is that accurate? Yes.

That is accurate. Okay, it's accurate. Okay. And his response was what? What if I get there first?

Oh, I knew you like, I love him. This is the guy for me. What was the rest of that date like? Yeah. And that's one of the best parts of my relationship with him. It's been really hard at times, but we've managed to, neither one of us take a backseat professionally. It's actually very rare if you speak to CEOs, for example, that their spouse is also a CEO and going equally as hard, especially if

That couple has kids. I also had a great time chatting with author Gretchen Rubin, who opened up about a big turning point in her life. I asked myself the question, what's the most interesting subject? And I thought, well...

power, money, fame, sex. And it was like, power, money, fame, sex. And this to me felt like one big subject. It wasn't even that I wanted to leave law and become a writer. It was like, I want to write this book. And at a certain point, I thought, well, I'd rather fail as a writer than succeed as a lawyer. So I should play my hand. And there's Pritika Swara, an in-demand fashion model and now CEO of her own beauty brand.

Did you learn anything from your modeling career that's helped you as a CEO? Oh, 100%. You have to have really tough skin in the modeling industry. And it's similar in business where you can't let every single person's opinions bring you down. And you really have to know how to fight for yourself and fight for what's important to you. And we've got so much more. To get the latest episode of How She Does It, be sure to subscribe on Apple or wherever you get your podcasts or visit hermoney.com to learn more.