Our Body Politic

The Crisis of Caregiving

Episode Summary

This episode of Our Body Politic is a special on caregiving. We start the show with the voices of caregivers, lawmakers and advocates. Then, OBP creator and host Farai Chideya speaks with Sade Dozan, Chief of Development and Operations at Caring Across Generations, a movement with the goal of creating “a world where everyone can age with dignity, and caregivers are respected and supported,” about her caregiving journey. Farai also speaks with nationally recognized author Ai-jen Poo, the co-founder and Executive Director of Caring Across Generations, about taking care of our elders, our children and ourselves. Finally, on our weekly roundtable, Farai, attorney and trusts, estates and family law expert Lisa Brown and Washington Post columnist Michelle Singletary discuss what to plan for – legally and financially – when it comes to elder care.

Episode Transcription

Farai Chideya [00:00:00] Hi, folks. We are so glad that you're listening to Our Body Politic. If you haven't yet, remember to follow this podcast on your podcatcher of choice like Apple or Spotify or wherever you get your podcast. And if you have time, please leave us a review. It helps other listeners find us and we read them for your feedback. You can also reach out to us on Instagram and Twitter @OurBodyPolitic. We are here for you with you and because of you, so keep letting us know what's on your mind. We'd also love for you to join in financially supporting the show if you are able. You can find out more at OurBodyPolitic.com/donate. Thanks for listening. 

This is Our Body Politic. I'm Farai Chideya. 

Caregiving Rally Sound [00:00:48] Hello and welcome all to this Care Can’t Wait day of action. People do not realize that 54% of the people over the age 50 are caregiving for someone that is older or someone with a disability. Do you know that the average home care worker makes $12 an hour? Are you kidding me? No worker should have to choose between their family and their job. 

Farai Chideya [00:01:26] All of these voices are from February, when producer Mona Hassan and I traveled to the nation's capital to witness a rally on caregiving. Activists from all over the country, like Mary Kay Henry of SEIU, the huge union which represents caregivers among others, turned up and spoke out. 

Mary Kay Henry [00:01:44] By 2028, we will need a million more caregivers in this economy an estimated 4.7 million home care jobs, the fastest growing job in the US economy. And this work. Has been undervalued and underpaid since the beginning of our nation. 

Farai Chideya [00:02:06] And here's what Massachusetts Senator Elizabeth Warren had to say. 

Elizabeth Warren [00:02:10] No nation succeeds by making life harder for young parents, and no nation prospers by treating caregivers with disrespect. High quality care means that we pay caregivers a salary that is in line with their responsibilities and their expertise. 

Farai Chideya [00:02:35] Congresswoman Debbie Dingell, Congresswoman Suzanne Bonamici and Senator Patty Murray were also there. But it was truly the voices of the caregiving community that resonated the loudest. 

Richard Lui [00:02:46] I cared for my dad for seven years, flying from New York to San Francisco about three times a month, 300,000 miles a year for seven years. 

Farai Chideya [00:02:57] That's Richard Lui, a TV news anchor who almost had to step away from his hard earned career to take care of his father. 

Richard Lui [00:03:04] And while my father passed away a year ago. That mission for me did not end. Now I care for my mother, who was just diagnosed with dementia. 

Farai Chideya [00:03:14] These dramatic statistics and stories inspired nationally recognized expert on elder and family care Ai-jen Poo to organize this rally. We'll return to our again later in the show. But first, we spoke to one of her colleagues. Sadé Doze on Sadé is the chief of development and operations at caring across generations. 

Sadé Dozan [00:03:35] I'm Sadé Dozan, I use she/her pronouns. I am a sandwich generation caregiver. I am a mom to an awesome almost five year old and a caregiver to my parents who are both in their seventies. 

Farai Chideya [00:03:54] On any given day, Sadé has to shuffle between her three jobs, her paid work, taking care of her daughter, and now taking care of her parents in New Jersey. 

Sadé Dozan Home Sound [00:04:05] Yeah, I'll take it. And I made a list for the grocery too to write him the list…get that out of the way. OK, and I'll look at your hero while... What's the issue? I do not know. A lot of times the medicine doesn’t dispense. Okay. You know, it says we need it. And when I take it out, it's like half full. What's wrong? Okay. All right. Maybe in your hand. Maybe. No, this is something. Okay, I'm going to go that way and I'll be back…Mommy wait for me. Baby, I'm not leaving yet. 

Farai Chideya [00:04:43] Thats Sadé with her child and her parents at their home in New Jersey. Sadé was kind enough to sit down with me and talk about her caregiving journey. 

Farai Chideya [00:04:54] I've been a human for 53 years, a daughter for 53 years, a caregiver for a couple of years. How did you realize, Sadé, that you were a caregiver? 

Sadé Dozan [00:05:07] Oh, that's such a good question. So in 2018, I found out that I was pregnant pretty late into the first trimester, and I was like, okay, I was not prepared for this, but my mom and my father were kind of like, okay, well, we can figure this out, like we will make a plan. And for them, that meant moving to another state, to New Jersey, to be closer to me and my husband and then giving birth to my daughter made me a parent. So when my daughter was about six months old, again, part of the plan was that my parents would help take care of my daughter part time. My partner and I were on our way to celebrate our anniversary, and my mother was holding my daughter ready to take her for the night and in her arms, my mom had a heart attack. And things just kind of sped up and slowed down at the same time and grabbed my daughter. We called the police, we called the ambulance. We didn't know what was happening at the time, but we found out that my mom had had a very serious heart attack and she was actually in an induced state. So she was fully unconscious for a number of days and that was it. From that moment, I went from daughter and mom to full time caregiver in a matter of seconds. 

Farai Chideya [00:06:29] America is still a nation with a wide range of people across generations, and yet we have one of the worst social safety nets in the world. How do we get to a place where Black and brown people can expect to be cared for in our elderhood or disability as well as everyone else? 

Sadé Dozan [00:06:48] The reason why I feel so often that I'm struggling with navigating all these care plans and trying to figure out how to take care of my mother and my father is because it's actually impossible. No matter how solid your plan is, no matter how solid your resources are, things are constantly falling through the cracks because it's not actually an individual responsibility. It's not really just the family's job to do this. It's a societal issue. So the lack of home and community based services and the lack of investment is really what puts that fracture in place. What happens is without the true real investments in home and community based services in long term supports, you end up with a society that is weaving together kind of like puzzle pieces and just trying to figure it out and make it work on salaries that are too low and leaving the workforce way too early and those that are not currently doing paid care work. Family caregivers who may have other jobs are receiving a significant amount of financial strain. The lack of support means that we're draining finances even more, which pushes folks further into poverty. 

Farai Chideya [00:08:02] One of the things that makes me sad and confused honestly by my own caregiver journey is sometimes you do everything that you can and people still are sad and disoriented because life can be sad and disorienting when you're not feeling well. How do you deal with those moments where you're like, I did everything I could? 

Sadé Dozan [00:08:20] I've got to tell you, I always feel like I'm doing all that I can, but it's never enough. And sometimes that can be from a financial point. Sometimes that can just be from an emotional point where my mom and my dad are just having a really hard time because they're facing continual issues. So my father had an aneurysm a few years ago and he had just recovered from cancer a few years before that. And maybe about a year or two ago he found out that the cancer was back. So stage four, prostate cancer. So it's almost like whack a mole, right? You put one issue out and then another one comes up. And there are times when I have to remind myself that life has many ebbs and flows. We find the joy where we can. And when we're having a hard medication day or diagnosis day or we had a really hard day at the doctor, we kind of just remind ourselves that this is the way it is and it shouldn't be, because part of the reason why Black folks and brown folks in particular have the sort of health outcomes that they do are because of the wealth gaps that we have, are because of the lack of access to medical care and support. So it's one of those things where you make the best of the moments that you can, but then you point the frustration outward. You don't point the frustration into your own family. I channel it through advocacy, I channel it through showing up and signing petitions and doing days of action because that's where responsibility needs to be held. 

Farai Chideya [00:09:55] Yeah. And so tell me about, like, how do you think your daughter is absorbing what it means to be in family, what it means to be in care of each other? And what lessons are you trying to give her? 

Sadé Dozan [00:10:07] I would say this is what makes me cry the most. So I have pretty aggressive rheumatoid arthritis that is escalating year over year. There is going to be a point where I need a significant more amount of care, where the medications aren't going to be working as much, where my body is just going to be deteriorating and there's going to be a point where I'm going to need full time care. And I think about my daughter a lot. I think about how my child is going to care for me or be put in the position if we don't fix this system, where she's going to feel that same sort of cultural obligation to care for me as I did for my parents and as my parents cared for theirs. And that's going to affect her ability to care for herself, to care for her family. And it further perpetuates that cycle. It divides generational wealth. It impacts your emotional self. That idea of the cycle is what drives me to tears because I know that I'm going to need full time care. I know it. And if we don't fix the system today, it's not going to stop. 

Farai Chideya - You have a partner, a husband. How does he deal with the care questions in your family's life? 

Sadé Dozan - So caregiving right now costs me about like 30% of my income. I actually, like, have a full consulting business to offset and supplement At what point my husband and I, we were doing the math. We were like between child care and care work and like the supplemental medical costs for my parents, like, this is just not sustainable. And it's actually saves us money for him to stay home. Oh, wow. Yep. Yep. He is a full time stay at home dad. And he does that work so beautifully. And I value it so much. He works so hard. He holds the home down. He holds our child down. He shows up for my parents in a vast amount of ways that it would be beyond impossible… because it's already impossible now. So it's beyond impossible without him. Yeah. 

Farai Chideya [00:12:27] Sadé, thank you so much for talking to us. 

Sadé Dozan [00:12:30] Thank you. 

Farai Chideya [00:12:35] That was Sadé Dozan, a caregiver for her parents and child and chief of development and operations with Caring Across Generations.

We are taking a close look at caregiving, and this is a topic very close to my heart. So according to the Census Bureau, nearly 17% of people in the United States are over age 65, and that number is only going to continue to rise. From 1920 to 2020 the number of people 65 years and older grew almost five times faster than the total population. So how can we take care of our elders, plus our children and ourselves? What needs to change? We turn next to Ai-jen Poo, a nationally recognized expert on elder and family care and the author of the celebrated book The Age of Dignity: Preparing for the Elder Boom in a Changing America. Ai-jen Poo also happens to be the co-founder and executive director of Caring Across Generations, an organization devoted to building a movement to ensure everyone has the care they need. Ai-jen, thank you for this important conversation. 

Ai-jen Poo [00:13:46] Thank you so much for having me. 

Farai Chideya [00:13:48] So let me start with the question of the elder boom. What are we talking about when we're talking about an elder boom? 

Ai-jen Poo [00:13:55] We are talking about the fact that this very large culture defining generation of baby boomers is reaching retirement age at a rate of 10,000 people per day. Turning 65. Yeah. Every 8 seconds, someone in America turns 65. And because of advances in healthcare and technology, people are living longer than ever, longer than we ever could have imagined just a generation ago or two maybe. And so the boom is really about the growth of the older population in an unprecedented level, and then how embracing the growing aging population we have in our country actually can offer us opportunities to make us stronger as a country. 

Farai Chideya [00:14:42] Let's start with the structural side of this elder boom. You held an event in D.C. earlier this year with members of Congress, as well as caregivers and people who use paid caregiving. What did you walk away with after that day? 

Ai-jen Poo [00:14:56] All of us, and really is all of us who are touched by this issue, by the need for care in America, whether we're parents or family caregivers or care workers or people in need of assistance. Really, all of us are touched by this issue or have a loved one who directly is. And if we actually started to come together, we could change everything because it is the largest force for change in the history of America. It's like every race, every class, every geography, every community is touched by this issue. And we're now starting to come together. And we have champions in Congress who are mobilized and are working on our behalf. And I think that we are at the precipice of some real change here. 

Farai Chideya [00:15:45] What are you hoping that the federal government might be able to do as it looks at the elder boom, which will affect, you know, every facet of society with seniors growing as a category much faster than young people. 

Ai-jen Poo [00:16:00] My vision for how this would all unfold is one that I think is shared by tens of millions of people, which is that infant and child care becomes much more affordable and accessible to everyone who needs it, that anyone who needs to take time off to take care of a loved one or to spend time with a newborn has the ability to do that because we have paid family and medical leave and that any of us, as we're aging or if we develop a disability or someone that we love does or has, that we have the assistance to support the care that we need as we age in order to live with dignity. All of those options could be available to us if we invested as a society in care. And what I mean by investment is that the government actually play more of a role in making care affordable and accessible and also in making care jobs. The workers who we rely on to take care of us, living wage jobs with benefits and real economic security. This is all part of what I call investing in the care infrastructure for the 21st century. So it's really a win win. 

Farai Chideya [00:17:20] Talk a little bit more about the impact on the lives of working people who are caregivers, whether they are caring for children or for adult relatives. It seems to me I mean, certainly I'm facing some of this myself. It's hard to figure out the structure for navigating your working years and caregiving for other people because it's just not really done well in this country unless you pour a ton of money into it. So let's first talk about people who are giving care or managing care for others, and then we'll talk about people receiving care. 

Ai-jen Poo [00:18:02] So we have two kinds of caregivers in this country. We have caregivers who are caring for family members, friends or loved ones in addition to working outside the home. And there are just enormous pressures where a lot of family caregivers are forced to leave the workforce. And when they do so, they lose all kinds of benefits like Social Security benefits and the stress that working family caregivers face. It's not just in terms of affording care for their loved ones, which is a thing, but it's also in terms of constantly being on call and nervous that something's going to happen and you're going to have to leave work and you don't have another sick day or you don't have paid family and medical leave. And so you're risking your job losing your income. Right? All of those stressors accumulate in our cells. The truth is, is even if care were free, it would still be challenging, it would still be stressful and we would still be a part of it. Right? We're always going to be there for our family members and our loved ones. And having the government play a bigger role in helping us afford respite care or home care or any kind of assistance for our loved ones so that we can work with less stress is actually a huge deal. Now there's another kind of caregiver, a professional caregiver, and that is someone whose job it is as a career professional to come and support our aging loved ones, our loved ones with disabilities or chronic illnesses or our children. They get up every day, they take care of their own families and they come to work and they take care of hours. And it's more than a calling. I would say it's definitely more than a job, but it is a real passion for the millions of professionals who work in the care economy for the types of wages and benefits and job conditions that they face is really a testament to the dedication of the people who do this work, who happen to also be overwhelmingly women and majority women of color. The wages are so low that I think it's fair to say that the people that we're relying on to take care of us can't actually take care of themselves or their own families doing this work. That's why we have a 20% annual turnover in child care professionals and a 50% or more annual turnover and home care professionals because people simply can't make ends meet doing this work even though they do it with passion and determination. 

Farai Chideya [00:20:51] One of my neighbors in in Brooklyn was doing home care for a person in New Jersey and would spend the night there not be able to be with her own family and wouldn't get paid for 24 hours, even though it was impossible for her to do anything but stay over. But she wasn't earning appropriately for that kind of staffing. And that's just one of many examples. On the other hand, the people who work with my mother and with other people in the facility have kind of banded together to form like a little informal association. They refer each other to clients and are paid appropriately and are awesome. But that is a very… it's a very privileged community. What kind of regulatory or legal approaches or government approaches need to go into examining the pay structure for paid caregiving? 

Ai-jen Poo [00:21:57] Most people access long term care through the Medicaid program, which is an income tested, a means tested program, which means that you can't earn above a certain amount of money and you can't have assets in order to be eligible. So a lot of people who are on Medicaid are either poor or impoverished themselves in order to be eligible for these services. And it's one of the biggest drivers of inequality that nobody really talks about because it disproportionately impacts people who are lower middle class or working class who couldn't afford to pay out of pocket for care. So they have no choice but to completely impoverish themselves, which means that they don't have. Much to leave in terms of a generational transfer to the next generation. So all this to say what could happen is that government could increase the funding for a program like Medicaid so that more people are eligible for it. And the workers who work in the Medicaid program, which currently is about 70% of the home care workforce, works for the Medicaid program. Those workers could have living wage jobs with benefits. Right now, we have a workforce crisis where there's tons of places in the country where people are eligible and can't get access to the services because there's no workers available. The same thing goes on the child care front, making child care much more affordable. The U.S. House passed a bill that would make child care much more affordable for many, many more families by capping the amount that people would spend on child care at 7% of their income. Mm hmm. Yeah. And that would be huge, because some people are spending over 30% of their income on jobs. Yeah. And then it also the same bill that passed through the House but didn't make it through the Senate included establishing our country's first paid family and medical leave program and starting with four weeks was in the bill. There's precedent for it at the state and local level, and there's an appetite for it on the part of voters across partizan lines. And so that's what we're really looking for, is then very next opportunity we get for the federal government to say we're going to invest in care, the way we invest in other forms of infrastructure that are at the heart and soul, the foundation of our economy and our society's well-being. 

Farai Chideya [00:24:43] You've talked about caregiving as invisible work. What does that mean? 

Ai-jen Poo [00:24:47] Oh, well, I think most of us who are caregiving right now, including many of us who are listening, probably don't even realize that we're caregivers, right? We're just doing what we are meant to do, which is to take care of the people we love. And and I think we have largely just considered it part of our duty, our personal responsibility. And if we're struggling with it, if we can't afford it or or any of the many, many challenges that people face with with care every day, we consider it a personal failure. What we are starting to recognize, especially since the pandemic is without care, nothing else can function. And so the pandemic kind of took the patchwork ways that we made it work out from underneath us. Like the you know, it's like the Jenga blocks finally fell in the pandemic and it made it more visible and visceral to more of us. But the fear is that we'll go back to kind of wanting to put COVID in the rearview mirror and back to the old ways which were unsustainable to begin with. The Jenga blocks falling should have told us that we need a different kind of infrastructure to support us. 

Farai Chideya [00:26:11] I think COVID also surfaced that anyone can become disabled at any time. 

Ai-jen Poo [00:26:16] It sure did, there's issues in terms of finding culturally competent care. I know a lot of my friends are grappling with the fact that their parents are non-English speaking. Yes. And and don't eat certain kinds of food. And, you know, it's I and our particular faith tradition and and just to have access to the kinds of services that help people feel at home really requires the kind of training and investment in the workforce that we haven't made thus far except for in a place like Washington State where they actually have invested in training the home care workforce to the extent that they've trained more than 40,000 workers per year in 12 different languages, culturally competent care. And it's really extraordinary what they've been able to achieve there with that infrastructure. 

Farai Chideya [00:27:18] You had mentioned the three pillars of care infrastructure. What are those? 

Ai-jen Poo [00:27:23] So they are child care paid, family and medical leave and aging and disability care. What families need in the 21st century is not any one thing. And we want to be able to have the supports that allow us to live, work and care with dignity at every stage of life. That is the goal, especially understanding that oftentimes care falls on the Farai and the family, the sandwich generation family caregiver who's managing care at both ends of the generational spectrum and and the pressures on that working age adult are untenable. And so we really want to think holistically about what people need at different stages of life and make sure that those supports are there. We don't just focus on child care or just aging and disability care. It's all of it. 

Farai Chideya [00:28:25] So as we wrap up, I want to just circle back to the scope of your work and the age of dignity. That book of yours ends with an exercise that I'd like you to do. And if you close your eyes and imagine an ideal future community, what would it look like? 

Ai-jen Poo [00:28:46] My community would be intergenerational. And I've just seen the beauty of my mom and my niece's relationship. My mom is in her seventies and my niece just turned nine, and the incredible value and richness that they offer each other in their relationship. Housing is really game changing and something that I want for myself. So I want an intergenerational community where there is the ability to walk in the woods and be around nature and hear birds around. I want to be able to cook big meals for all the people in the community because I love to cook and I love to cook big meals. 

Farai Chideya [00:29:39] Yes, yes, yes. 

Ai-jen Poo [00:29:42] And I want to be able to do as much yoga as possible as I can manage as I age and become more frail without injuring myself, because it's something that makes me very happy and I want to be able to sit around and drink wine and talk to my friends and also contribute and, you know, be of service and whatever way I can be, even if it's in very small ways. 

Farai Chideya [00:30:12] Well, that's a beautiful vision and I share a lot of different touch points with that. And I thank you so much for joining us. Thanks Ai-jen. 

Ai-jen Poo [00:30:20] Thank you, Farai. 

Farai Chideya [00:30:24] That was Ai-jen Poo, co-founder and executive director of Caring Across Generations. 

BREAK

Farai Chideya [00:30:41] Welcome back to Our Body Politic. I'm Farai Chideya. As part of this special on caregiving, we're diving into the legal and financial questions we need to think through for ourselves and our loved ones as we age. Joining me this week is attorney Lisa Brown of Lisa Brown Law. She is an expert on trust estates and family law within Washington, D.C. and Virginia. Thanks so much for joining us today, Lisa. 

Lisa Brown [00:31:07] Thank you. I'm very happy to be here. 

Farai Chideya [00:31:09] We are also joined by Michelle Singletary, who writes the nationally syndicated award winning personal finance column The Color of Money for The Washington Post. She's written for personal finance books, including her most recent one, What to Do With Your Money When Crisis Hits: A Survival Guide. Michelle also finds time to volunteer to mentor community members experiencing financial challenges. Welcome back to the show, Michelle. 

Michelle Singletary [00:31:35] Thank you for having me. 

Farai Chideya [00:31:37] Oh, I am thrilled to have you both, because this is something I mean, I'm, you know, turning 54 this summer and this is the story of my friends lives and my life, you know, is caregiving. So let's start with you, Michelle. Baby boomers are aging 73 million people, and there is an increase in the proportion of the society who are people who are becoming seniors as opposed to younger people coming up. So there is definitely a growth in the aging population. So what are the greatest financial demands that aging households and their adult children are going to face today? 

Michelle Singletary [00:32:16] Well, it's exactly what you're facing, long term care. Many people are covered by Medicare or Medicaid. So even though they may have to make, you know, additional co-payments and things like that. But what is not covered is long term care. People assume Medicare will cover it and it does not. Now, Medicaid does, but that means that you have to be almost pretty much destitute to qualify for Medicaid. So you have no, you know, very I mean, like a couple thousand in assets. And so what we're finding is because the boomers are aging, but not just aging. And can I just be candid because this is the reality… You know, back in the day, they didn't live this long, so you didn't have that stress because they weren't going to live much past 60 or even 70. But now we have folks living not just to 70, 80, 90. And and then, you know, as you get older, there's more care that is needed that is not covered. So you've got a generation of people who are coming into their highest earning years who may have to take time off or divert some of their assets that they will save for their retirement to take care of their aging parents. And if you're people of color or minorities or women, your income didn't keep pace, you know, discriminatory policies, you weren't paid the same. So you don't have the same resources saved as a lot of white Americans. So it's even worse if you're a person of color or from a low income community. Now, 70% of us, I think that's the figure will need some form of long term care. And here's the other thing. Even if you have the money, you still need someone who's going to look over the money, who's going to look at caregivers. It's one of those issues that has not gotten the attention that it needs. It is crucial that we figure out how to take care of this population without bankrupting their adult children. 

Farai Chideya [00:34:12] Absolutely. And for example, there's the term spend down before people can access Medicaid. What  is a spend down and how do you qualify for Medicaid if you really don't have resources left? 

Michelle Singletary [00:34:25] Lisa might know better than me, but I think that the last time I looked, it's like like $2,000. There's some allowance for you to have a home to qualify for. Medicaid is pretty is like you have nothing except for maybe a home. And a lot of people have all these strategies to try to hide money. There's a lookback period, so don't be trying to send the money off to your kids thinking I must send it to them, and then I'll qualify for Medicaid because they will look back and come get that money. But if the person has had Medicaid or has some help and passes away and let's say they had a house or something, they can actually come after those monies as well. To pay that bill because they figure, okay, they've got money that's coming to them. But really, we're talking about people who have really nothing. Many Americans are not necessarily in that position. So we're talking a great deal of population that isn't going to qualify for Medicaid because they actually had too much, even though from their perspective, it's not a lot. 

Farai Chideya [00:35:21] Yeah. Lisa, as you listen to what Michelle is saying about, you know, the long term care expenses and the fact that qualifying for Medicaid is not a turnkey thing for a lot of people, how do you start the conversation with your clients and potential clients about what they need to do and what they need to think about. 

Lisa Brown [00:35:42] Yeah, well, there's a lot to consider and it really varies depending on many things, including one's relationship with their next of kin, likely their adult children. You know, if there is a spouse there, how many resources you have available if you have long term care insurance or not? The issue of long term care insurance is is a big one. So that makes a huge difference in how you're going to plan. If you if you have long term care insurance, the question will be for how long is that coverage for and how much does it cover? As we know, long term care being very expensive. It started off kind of aggressive and then tapered off as the companies realized that they weren't going to be able to profit from those policies. And so the policies became very expensive and there became a lot of restrictions to the policies. So they may only cover a two year period, they may only cover $4000, $5,000, where as a long term care facility is much more expensive than that. Yeah. And then, you know, the issue of qualifying for Medicaid in order to demonstrate you have no resources. There's a couple things that attorneys can do to demonstrate that, including starting an irrevocable trust. Sometimes we call it an asset protection trust or Medicaid asset protection trust that involves starting pretty well ahead of time. And the lookback period is actually five years now. So you really kind of need to plan ahead for that. And as you're planning for that, you're making a decision that you're going to lose the ability to direct where your assets go. And so you decide is going to be a beneficiary, maybe your children. And those assets really become their assets once they're in the irrevocable trust. And it's very difficult to change that. 

Farai Chideya [00:38:05] So just explain a little bit more about, you know, why that's an option that might make sense for some people that people might not know about. 

Lisa Brown [00:38:13] Well, one thing about a home, for instance, if the home is excluded when you're trying to qualify for Medicaid however, if you have a home and the state is paying for your long term care after the death of that recipient, there will be a lien on the house just to say there's a house. They're able to stay in that house and get the care or keep that house during their lifetime. But then the money that the state has paid, they can get that money back from the house after the person has died. 

Farai Chideya [00:38:50] From the sale. 

Lisa Brown [00:38:51] Right. So setting up an asset protection trust and taking assets, including home out of the individual's name, basically what we're saying is that that person doesn't own those assets anymore. The government can't come after them, you know, after death or before. 

Farai Chideya [00:39:11] Yeah, I didn't think about any of this stuff until recently. Michelle, this stuff is just not important until it's important for most people. Meaning I think a lot of us kind of jump into the game late, you know, after it might have been better to make decisions earlier. How can we start thinking about these things at the appropriate times? 

Michelle Singletary [00:39:36] Well, you know, you're right in it, and it's not something that you wouldn't think about. But like my husband and I are now sixties. And so we are actually talking to our children. We're in good health. You know, we're not anticipating anything, but we're talking to them now about what we have, what we expect. When this was talking about the trust, understand that you have to time that right, because if there is any cognitive issues, then they may not be able to sign those documents. So you got to go to court. Somebody's got to be appointed as a guardian and making sure that it's in that person's best interests. So you don't want to wait till there's a mental decline because you know that other relatives can challenge it. It's like a whole hot mess. But the problem is, a lot of times people don't want to talk about it, you know, and particularly when they're healthy, they're like, Oh, I'm going, you know, you all need to know my stuff and and then it's too late. So when your parents are starting to be in their late fifties, sixties, that's the time to consider should you get long term care insurance? If you're not going to get long term care insurance, how will you self-insure for those costs? Like my husbandand I decided not to get long term care insurance because just what Lisa said, the policies have changed so that they're so limited. You might have a lifetime benefit of a couple hundred thousand dollars. So you pay, you know, five, six, seven, $8,000 a year for a policy that might only last you two years. And so the higher income you are, you might think about self-insuring, meaning that you're going to take that money, you're going to invest it and you'll have a pot of money to take care of you. But if you're not going to do that, then a long term policy care could help, at least in those first couple of years until you hit that max. 

Lisa Brown [00:41:15] Let me just mention one other thing regarding the considerations with regards to a medicaid asset protection trust. The other issue is being sure that you're going to be able to get into a facility that you want your loved one to be in. Right? And so a lot of facilities don't accept Medicaid, which means that if you are trying to qualify for Medicaid and that's your strategy, you're going to be in a facility that takes Medicaid and you want to make sure that, you know, it's going to be a facility that you want your loved one or you want yourself. 

Michelle Singletary [00:41:52] The Washington Post, we just has some stories that run that a lot of facilities are no longer taking Medicaid and they are actually evicting the seniors. So they signed a contract that said they take Medicaid. The family put them in there thinking we're good. And the facilities say, you know what, Medicaid is not, we reimburse, enough's enough. Your mama got to go. And they are, you know, putting them out. So that's where we have to talk about policies to make sure that these homes aren't doing that. One case that we covered, the facility, evicted the mom, and I think less than two years later she passed away because it was too traumatic for her. So Lisa’s absolutely right. You might say I’m gonna get Medicaid. But, you know, let's give real the facilities that take. It may not be those gold star places that you want mama and daddy to live in. 

Farai Chideya [00:42:42] Yeah, it's you know, I think about all the ways in which, you know, the game changes when people think that they have done their best. There's a couple who's very dear to my heart, you know, who've been married over 70 years. Yes, that is seven zero. And the husband worked at Bethlehem Steel, which got rid of its retirement health insurance. Given that things do change, you know, people change their policies. How do you approach this work of setting yourself up or your family up for caregiving needs, knowing that things change? I mean, it's nerve racking. 

Michelle Singletary [00:43:20] Yeah, it's again, it's all about planning y’all, you know, everybody who's listening. Don't wait till the last minute to do this thing. You know, for example, my company, we were covered by my health insurance. It was even better. My husband works for the government. It was a better plan. And then they cut out retirement health care that threw us for a loop. But we caught it because we were pre pre retirement planning. 

Farai Chideya [00:43:44] So yes. Yes. Yes. 

Michelle Singletary [00:43:46] And is pre we were pre pre so I love it actually because we were pre free lining everything out. And also we had children late in life so I've got a 27 year old 25 year old and a 22. All right 60. And so we are still carrying the last two kids on our health insurance. So even though we will qualify for Medicare in a couple of years, we still got kids we're going to be covering it how they get themselves situated. And so we because we were pre pre retirement planning, we realize that for the federal government, their health plan you have to be on it five years before you retire to take it into retirement. We found that out in our pre pre-retirement. Now if I we had just wait it just stayed on my policy until my husband retired. He would have had to work an extra five years for us to qualify for that. He's retiring at the end of this month. You have to think down the road. You also have to think who's going to take care of me. And we don't talk about this when we talk about long term care, but you got to have some relationships with your children. And if you don't have children with some nieces and nephews or somebody, you can't just be living your life thinking, hey, I'm good. I don't have any kids or my kids, I don't like them, and I'm not talking to him. I don't like my daughter's husband. Oh, well, my son's wife. You better shut up, because those are the people that's going to be taking care of you. So if you have a good relationship with your adult children, you all need to get us some therapy because you don't have to have somebody take care of you and you got to fix those relationships. That is a financial issue because even if you have the money, you have to have someone to overlook your care, somebody that goes to the doctor with you, someone who reads the notes from the caregiver who comes to see you, and also makes sure that you are not subject to elder abuse. There are a lot of great caregivers out there, but there are a lot of funky caregivers out there. 

Farai Chideya [00:45:36] Lisa, you know, we put stuff out on social media to ask. If people had questions about caregiving and this was something we got that very much relates to what Michelle was just saying. So a question from one of our listeners was: how does one plan for the future, including paperwork like Will, Pet Care, Medical and Financial POAs? Naming an executor, one's own possible elder health care and rehoming Disposing of a home and its contents… When one is single with no trusted close friends and no family. For someone who feels like they are the Lone Ranger here, what do you do, Lisa? 

Lisa Brown [00:46:18] Yeah, I have had this come up a few times and I'll say, like you, most people, even if they don't have direct family members or immediate family members to pass things down to. There are friends or there's somebody who, you know, people will want to bless, you know, I’ll put it that way. But in the event that there isn't, I would say think about charities. You can pass down your wealth and your resources to charities. More than one. Sometimes people want to form a scholarship from their undergrad or, you know, want to help young people. It may not be somebody who you're super close to, but that for some reason you want to help this family who goes to your church or something like that. 

Michelle Singletary [00:47:17] You need to build a community of people. So if you are single, no children, I mean, that's fine. That’s the life that you chose or the life that happened to you? But you need to build a community. So if you've got nieces and nephews and cousins, you need to be active in their life. So they step in. And if it's not a relative, then you should become a part of a community, a church, a synagogue, that the people will look out for you and you would find someone within that group that you trust, you know, vet people and then say, hey, listen, you know, I don't have kids. I don't have any nieces and nephews. I'm going to need somebody to help me with this. I want you to go to the attorney's office with me so your attorney knows who this person is and this is what I want done when I pass away or if I become incapacitated, would you help take care of me? And this is what I would like. And it's just that's the reality, because you don't necessarily want to really rely on a professional because you want someone who knows you, knows what you like and what you want. And that takes planning. Now somebody listening might be thinking, Well, that just sounds like you're going to use people know that's about building a village. Yeah, because that's what happens in a village, right? Listen, I was a hard mom. I was a really tough mom. And now I'm working on my relationship with my girls because I'm like, those are the girls that'll be taking care of me. So I'm changing how I'm relating to them because I'm going to need them. That is just the reality of it. And I'm also training them to take care of all the relatives in my family, like my sister who's older than me, has some health issues. I send them over to her house. I say, go help your auntie, Go sit with your aunt. Ggo take her some dinner. And so now they have a relationship. And so if her kids don't take care, my key is going to take care of my sister. 

Farai Chideya [00:49:05] I have plans, which I'm actively working on to have a kind of Golden Girls retirement. And also I have a number of God kids and other people in my life who I hope will still care about me, you know, as I age. But I am trying to put in place some things to become an elder with other people, plus or minus my age. And I think that it's going to require quite a lot of thought because what if you move into a house with three friends and one of you becomes disabled sooner than the other? You know, I mean, there's many different factors that I think that we have to figure out. But getting back to the legal questions, Lisa, what should someone who is in their fifties be looking at and doing legally in order to be prepared? 

Lisa Brown [00:49:56] I would say make sure that you get your estate planning documents in place. Most of us will become incapacitated at some point. And of course, all of us are going to die, you know, at some point. And you know what, today, things are happening so unexpectedly that I would just say most of us, regardless of our age, is should get some documents in place. 

Farai Chideya [00:50:23] What are we talking about in terms of documents? 

Lisa Brown [00:50:26] So if you are incapacitated, so you're living, but you cannot make decisions for yourself for a short period of time or, you know, over a longer period of time, you need to get a durable financial power of attorney that's for, you know, financial decision, somebody who can pay your bills and who can get in to your bank account, write checks for you and so forth. A medical power of attorney who can make medical decisions at a time when you're not able to make the choices. A Hipaa document who can get health care information about you. And, you know, hospitals are very careful. Generally, they want to make sure that if you're calling to get information about somebody, that there's some some document in place that says that you are entitled to that information. Right. And then what happens if you reach the point where you're on life support or you're have a condition where the doctors do not believe you're going to be able to survive or have a certain quality of life. What do you want the doctors to know in advance? Right. A elder care attorney really should talk to you about what your options are. You don't just have to say I don't want any treatment. As soon as the doctor says X, Y, or Z. But you've got more choices than that and you can decide, you know, I'm going to put even that situation. I want a particular person to make that decision. Or a lot of people will say, you know, I've seen relatives or individuals be on life support for a long period time. I know I don't want that and I want treatment to stop. But what I will say is that if you don't put in place who you want to make those decisions, the hospitals or your doctors, they have their own policies about how they decide who to go to. And it might just be your older sister whom you don't want to make the decisions for you. You know what I mean? It may be that you want your niece or your neighbor or somebody who knows you better to make the decisions. But if you don't have the documents in place, they're going to go by their own policy. 

Farai Chideya [00:52:42] In this episode, we interviewed Sadé Dozan on who is a sandwich generation caregiver. And here's a clip of a typical day in her life. What's the issue? 

Sadé Dozan Home Sound [00:52:53] What's the issue? I do not know. A lot of times the medicine doesn’t dispense. Okay. You know, it says we need it. And when I take it out, it's like half full. What's wrong? Okay. All right. Maybe in your hand. Maybe. No, this is something. Okay, I'm going to go that way and I'll be back…Mommy wait for me. Baby, I'm not leaving yet.

Farai Chideya [00:53:19] So that's just some of the background chatter in her family. Her mother is disabled. She's a caregiver for her mother. She herself has some health conditions and she has a young daughter. So, Michelle, for someone who is in this sandwich of caregiving in both directions, you know, up to her, her parents and down to her child, what are things to think about from a practical financial level? 

Michelle Singletary [00:53:47] So I think you know, you look at your budget and see in those cases like this was similar to me taking care of kids, had my father in law, we actually hired caregivers for some part of the day. So we had someone come in in the morning and then we had someone come in the evening and I filled the gap. So you don't have to do it all yourself. There's a whole range of care that you can have, and there are lots of facilities and senior care planners that will help you figure out that gap. But there are companies that will help you. For example, take your parent to their doctor's appointments. So if you're like, have to do something with your child, they can take them to the doctor's appointment. So don't think that you're in it alone. But that also means planning for the cost of that. The key word for this whole conversation is plan, plan, plan. Don't think of it as something that you're doing for yourself. If you flip it and think I'm doing this for the people I leave behind, you do not want to leave a hot mess. And no matter how you think people get along, just wait some money on the table. Then craziness happens. So when it comes to actual paying for the care again. You know, planning, figuring out, okay, I got X amount of money a month, How can I make that stretch? Who else can I call to help? That's the other thing, caregivers, because it usually ends up being one or two people, right? They don't want to ask for help. And people will ask you all the time, What can I do to help? And so instead of saying, No, I'm okay, don't say, you know, what happened. Would it be okay if you brought us dinner on Thursdays? Because I'm just wiped out by Friday and Thursday? If you could just commit to that, that would help me a lot. Well, on Sunday, I want to go to church and I want to go by myself and just have some peace. Could you come sit with mom while I go to church? You know, ask for help. 

Lisa Brown [00:55:37] Yeah. And, you know, there is a lot of statistics about caregivers actually dying before the people who they have caring for. And I think that's such a good piece of advice to ask for help. Just don't be somebody who's trying to do it all by yourself. 

Farai Chideya [00:55:57] And, Lisa, you know, there has been a generational shift for a lot of people of color, both U.S. born and immigrants who were not used to having thought about legal issues in aging. You know, it's like my grandmother took care of her mother. My mother took care of my grandmother as she was aging. People didn't really think about like, what is the paperwork that goes along with it? So what's changed? 

Lisa Brown [00:56:22] I think one of the things is that people are selective about what they want to happen. I think maybe in the past people just thought, you know, I just trust whomever is going to make the decision or I'm not going to worry about that. With our own knowledge about, you know, the different possibilities of what ways we can be cared for and what we want: I want to stay in my home. I don't want to go to a long term care facility or, you know, I don't want to go to this type of facility. 

Farai Chideya [00:56:54] And Michelle, I'll wrap up with you here. For people who are, you know, half my age, you know, in their twenties, who may not be thinking about elderhood at all, theirs or their parents. What takeaway would you leave them with as they're starting their lives and careers to think about the future? 

Michelle Singletary [00:57:16] That's such a great question because we actually know from the statistics that more young adults are taking care of parents because lots of us are having kids later in life. And so for young adults, just I'm just going to be real old school here. There is a responsibility for all of us to take care of each other. And so, yes, it's your life, but who is going to take care of mom and dad or your favorite auntie or grandma? And so as you begin to plan your young adult life, you need to sort of in a little corner say, you know what? I may need to help mom or dad, grandma or my aunts and carve that out not just in your budget, but in your life, because that is a reality and what goes around comes around. So you do that then your children behind you will see the example that you set. I’m gonna cry…So my grandmother took care of me and I saw how she took care of me when she didn't have to. She my mother being she took I said that was a lesson for me. So I have been a lifelong caregiver. I took care of my grandmother at the end. I took care of my grandfather who died from lung cancer. I took care of my disabled brother too. He passed away at 32. I took care of my father in law that was taught to me by my grandmother. She said, take care of your brothers and sisters. I hope that we are setting the example for them that until there's policies in place and coverage for this care that is going to have to come from individuals and, you know, to whom much is given, much is required. 

Farai Chideya [00:58:52] Absolutely. Well, this has been an incredible conversation. And I always get so much energy from you, Michelle and Lisa, from you as well. This was really great. So, Lisa, thank you so much for joining us. 

Lisa Brown [00:59:05] Thank you. 

Farai Chideya [00:59:06] And Michelle, great having you on again. 

Michelle Singletary [00:59:08] Thank you for having me. 

Farai Chideya [00:59:10] That was personal finance expert Michelle Singletary of The Washington Post and life and legacy lawyer Lisa Brown of Lisa Brown Law.

Thanks for listening to Our Body Politic. We are on the air each week and everywhere you listen to podcasts. You can find us on Instagram and Twitter @OurBodyPolitic. Our Body Politic is produced by Diaspora Farms and Rococo Punch. 

I'm host and executive producer Farai Chideya. Nina Spensley and Shanta Covington are executive producers. Emily J. Daly is our senior producer. Bridget McAllister is our booking producer. Natyna Bean and Emily Ho are our associate producers. Monica Morales-Garcia is our fact checker. This episode was produced by Mona Hassan and Joanne Levine. It was engineered by Mike Garth and Carter Martin.

This program is produced with support from the Luce Foundation, Open Society Foundation, Ford Foundation, Craig Newmark Philanthropies, the Charles and Lynn Schusterman Family Philanthropies, Democracy Fund, The Harnisch Foundation, Compton Foundation, the Heising-Simons Foundation, the BMe Community, Katie McGrath & JJ Abrams Family Foundation, The Pop Culture foundation, and from generous contributions from listeners like you.