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--:-- Sean Rameswaram: Tonight, the Democratic candidates for president will once again debate each other. It'll be the last debate of the year, the first after the president's impeachment. But even with all the news, it's a pretty safe bet that they'll talk about health care.
--:-- Noel King: Almost every debate has opened with a conversation about health care. And even though several of the candidates are in their 70s, you seldom hear a mention of one essential role of health care in America, elder care. And that's curious because the government's kind of falling down on the job, which means people like David need to step up.
--:-- Sean Rameswaram: My name is David Iverson. and I became a caregiver for my mom when I was 59 and she was 95 and cared for her for most of the next decade until she passed away at the age of 105.
--:-- David Iverson: My mom was an extraordinary woman, engaged in everything, Really bright, very capable, in a different era and in a different time, would no doubt have been someone who had had a very dynamic professional career outside of her life as a spouse and mother of three sons.
--:-- Noel King: She was an active person politically. She worked hard for candidates she believed in. And so I remember walking into the kitchen once in the fall of 2008, and she was on the phone, and she would begin each phone call by saying, Hello, my name is Adelaide Iverson. I'm 96 years old, and George W. Bush was the worst president in my entire lifetime, so I'd really like you to support Barack Obama.
--:-- David Iverson: She was a powerhouse, and I just felt like she'd always been this constant presence in my life, and I wanted to try to do that for her. She got pneumonia and wound up having to be hospitalized and it became clear that things were really changing and that she wouldn't be able to live independently any longer.
--:-- Sean Rameswaram: And I sometimes refer to this as my 10-second decision. I was single at the time and though I had a longtime companion, and my friend Lynn and I had always lived separately and I felt like, I can do this.
--:-- David Iverson: My mom and I have a lovely relationship. We've always been very close. She needs help and I'm the person who can do it. I got help early on so that I could continue working because I was working full time. So I had someone who came in and stayed with my mom during the day and I moved down to her house Park, California.
--:-- Noel King: And so I had caregiving responsibility at night, every night, and then all weekend. And in fact, I stayed in the same bedroom that I'd grown up in as a kid. And I can remember waking up sometimes at night and thinking, this is pretty weird. I am almost 60 years old, and I'm sleeping in the same single bed I slept in when I was 10.
--:-- David Iverson: I remember people when I would say, well, I helped my mom in the bathroom. My friends would look at me like, say what? But that's really not that hard. It's not. The physical stuff isn't that hard. It can get tiring and exhausting, but you learn how to do it. It's just stuff you do.
--:-- Sean Rameswaram: I think the bigger change was when she started to begin to slip mentally because she had always been so sharp. She had always had such strong views and opinions on everything from Stanford football to politics.
--:-- David Iverson: And so I noticed she would start kind of hedging in her answers. Or I'd say, well, mom, what do you think, you know, what do you think's going on with our policy in Afghanistan or whatever? And she would, instead of having an opinion, which she'd always had, she would say, well, that's a good question. What do you think?
--:-- Noel King: And I realized in time that she was finding ways to sort of still seem like she was fully in the game, but wasn't quite as much. And the story I remember the most vividly, I walked into the kitchen and she was sitting in the chair she always sat in, and she looked at me and said, I think there are two Adelaides. There the Adelaide who smart and pretty and knows lots of things And there the Adelaide who ugly and stupid and doesn't know anything.
--:-- David Iverson: And I'm not sure which Adelaide is here right now, but I think it's the bad Adelaide. There's lots that's heartbreaking about caregiving, but I will also say that there is, There's lots that's heart-mending, you know, as well.
--:-- Sean Rameswaram: I learn more about myself through my experience of caring for mom than anything in my entire life. It shines a bright light on your vulnerabilities. You know, I'm someone who likes to be right. What you realize when you're caring for someone older, especially as someone begins to have problems with dementia, is that being right doesn't matter very much at all.
--:-- David Iverson: You know, I used to argue with my mom. She would say, well, you know, when I went to law school, well, she never went to law school. Or, you know, when I traveled to such and such a place, well, she'd never traveled to that place. I used to say, well, mom, not exactly.
--:-- Noel King: You realize over time that really doesn't matter at all. And it's sort of absurd to get hung up on those things. that one of the most important things about caregiving is to be right there for the person you're caring for, to see them for who they are, not who you want them to be or who maybe they once were.
--:-- David Iverson: It took me a long time to understand that. I became a caregiver thinking, okay, I'll have someone here 40 hours a week and I'll do nights and I'll do weekends. no problem. But if you add it up, nights and weekends is like, you know, 100 hours or more a week of work.
--:-- Sean Rameswaram: Early on, that wasn't such hard work. Over time, it became a lot of work. And so, I added more help. And I arranged so that I could at least get away and go see Lynn, my significant other, my partner up in Berkeley where she lived.
--:-- David Iverson: But it's hard sometimes to find the right help. And that's why I think a lot of caregivers sometimes don't get the help they need because it's easier to just do it yourself. I think part of what I learned so much from our caregivers who came into our home and gradually took over so much of the caregiving responsibility, I think they had a deeper understanding that caring for the old is part of life's bargain.
--:-- Noel King: I think it was in the San Francisco Bay Area, a lot of the caregivers that I had were often Fijian-American or Tongan-American. And I think my two primary caregivers and I would talk often late at night about that and about the difference in culture and how they came to that.
--:-- David Iverson: My best friend, he would tease me sometimes about, oh, people think you're so noble and everything. And he said, you know, it's not that you're really doing anything unusual. It's just unusual for a white guy.
--:-- Sean Rameswaram: And I think there's a lot of truth to that. And I think that if you were to look at a family and there are, you know, three sons and one sister and there's an elderly parent, I think you know where you'd place your bets as to who is going to take on that responsibility.
--:-- David Iverson: But I also think that when my brothers and I were boys, if someone had asked my mom, well, who of your three sons is going to be more likely to do this? She would have had an answer. And that doesn't mean that there was anything unique or special about me at all. It just means that I think sometimes in a family, someone has, I don't know, just a different connection or a different ease of relationship that places them more in a situation where they're more likely to maybe take on that role.
--:-- Noel King: My little rule of thumb about this is that everyone has to come to that realization in their own time and everyone comes to that realization later than they should the cost of a caregiver in the San Francisco Bay Area was usually in the neighborhood of $20 to $25 an hour.
--:-- David Iverson: So, you know, you do the math. Well, that's, I have $600 a day for 24-7 care. Well, that means what? You know, $3,500, $4,000 a week. We were able to afford it. My mom had a pretty good retirement, courtesy of my dad's retirement from Stanford University and Social Security.
--:-- Sean Rameswaram: And then my mom also was fortunate enough to have a house that was purchased for very little in the 1950s but that because of its location in the San Francisco Bay Area became worth a lot of money And so we could borrow against the house But that just luck If you lucky as I was you have a chance But most of the time, we don't have a plan for that, and we just kind of hope for the best.
--:-- Noel King: And as Gawande wrote in his book, Being Mortal, hope is not a plan, you know? But that's about where we are in this country with thinking through how we're going to provide elder care.
--:-- Sean Rameswaram: David Iverson is a veteran journalist and a film producer based in the Bay Area. These days, he writes and speaks about caregiving.
--:-- Noel King: By 2035, the number of older adults in America will outnumber children. Our country is aging. And according to Sandra Levitsky, who studies these matters, we are not ready for it. Not at all.
--:-- Sean Rameswaram: Not at all. Medicare is the primary health program that we have for our elderly. It is an acute care system, right? So it pays for doctor bills. It pays if you are hospitalized. It pays when you're released from the hospital and you might need some in-home skilled nursing.
--:-- Noel King: But any kind of supportive services for a long-term chronic illness like Alzheimer's, it doesn't cover at all. It doesn't cover just any kind of in-home help that's not related to a hospital visit. It doesn't pay for things like adult daycare. It doesn't pay for respite care. And most critically, it doesn't pay for any kind of institutionalized care.
--:-- Sean Rameswaram: If you have to place your mother who has Alzheimer's disease in a facility of some kind, it doesn't cover that either. And these are extraordinarily expensive services. So if you are wealthy and you can afford to pay for these services, you're going to be OK.
--:-- Noel King: If you're very poor and you qualify for Medicaid, many states will pay for some of these services through Medicaid. But the great swath in the middle, the middle class broadly defined, are the ones who are really facing the pressures of this crisis.
--:-- Sean Rameswaram: Social security is the president's theme. As in Washington, he discusses the outlook of the individual. Wasn't social security supposed to help with this?
--:-- Noel King: Social security was really designed to be an income replacement for retirees. What had happened at the turn of the 20th century was that people would stop working and then they had no sources of income.
--:-- Sean Rameswaram: They could live with family members, but the rates of extreme poverty among the senior citizens were very, very high. Because it has become increasingly difficult for individuals to build their own security single-handed, government must now step in and help them lay the foundation stones.
--:-- Noel King: Social security was designed to ameliorate that problem and take away some of the strain from families who were taking in retired parents. We must face the fact that in this country, we have a rich man's security and a poor man's security, and that the government owes equal obligations to both.
--:-- Sean Rameswaram: But it's not a health care benefit, right? It's an income replacement. And Alzheimer's is a medical condition. And if you need help to care for someone with a medical condition, that should be either covered by health insurance, people say, or it should be covered by our government health programs like Medicare.
--:-- Noel King: How is it that we're being caught right now sort of flat-footed on this? I mean, we knew people were going to get older and we knew health care was getting better, right? Right.
--:-- Sean Rameswaram: The issue is a longstanding political one. We don't change our public policies and our government programs without significant pressure to do so. Most people don't think about this issue before it hits them.
--:-- Noel King: Most people work really hard to resolve these issues of caregiving on their own before they turn to any help out in the community. And most people don't realize that Medicare pays for almost nothing related to chronic illnesses until they are in the position of really needing those services.
--:-- Sean Rameswaram: And at that point, they're too busy caregiving to do anything like notifying their elected representatives that something should change. So this isn't a situation where you're ever going to have a social movement around the issue of elder care.
--:-- Noel King: But it is an issue where there are, you know, very serious economic strains on our existing systems. and that could potentially be a pivot point.
--:-- Sean Rameswaram: So Medicaid, as I said, does cover some supportive services, but it's only available to the very, very poor.
--:-- Noel King: I talked to many, many sort of lower middle class and working class caregivers who were desperate for some kind of supportive services to help out and they would go and check to see if they were eligible for Medicaid and they couldn't believe how poor you have to be to qualify for those services.
--:-- Sean Rameswaram: And that's the point where people start, you know, sort of pivoting and thinking, I've been a taxpayer my whole life, and the government should be helping us at this point.
--:-- Noel King: So if you're middle class, you know, not poor enough to qualify for Medicaid, not rich enough to pay for private care services without hurting, what do you do? Most people are cared for by their families right And family caregiving is free That another reason why our government programs haven't changed very much, because the primary source of care is, in our country, family.
--:-- Sean Rameswaram: In our culture, in our society, we believe fundamentally that caring for family members, that's what we do in this country. We take care of our own. Three quarters of caregivers are women, and women disproportionately experience the brunt of trying to make these situations work.
--:-- Noel King: And we are living in a time when women are increasingly very well integrated into the paid labor force. They are having children later, so they are more likely to be still taking care of dependent children at the time that they're caring for their parents.
--:-- Sean Rameswaram: Are you part of the sandwich generation? That's when you care for your kids and your parents at the same time. The Pew Research Center says nearly half of American adults in their 40s and 50s have a parent who's 65 or older, while either raising a young child or financially supporting a grown child.
--:-- Noel King: I said I was a double-decker sandwich generation at one point with young children, myself, a mother, and a grandmother that all needed services.
--:-- Sean Rameswaram: The number of single-parent households has jumped exponentially. Families are more likely to be geographically dispersed throughout the country, so you're not necessarily living in the same town as your elderly parents.
--:-- Noel King: And most often they will either drop out of the labor force or cut down their hours at their job, which impacts their careers. Obviously, it impacts their long-term economic security because their contributions to retirement accounts and Social Security are diminished.
--:-- Sean Rameswaram: It's a rewarding job for many people, but it's a very challenging job. And it shouldn't be surprising that there would be some pretty steep consequences for taking on that work, particularly for extended periods of time.
--:-- Noel King: Has anyone tried to fix this? Did Obamacare try to fix this? When the Affordable Care Act was passed, there was a provision that was intended to sort of incorporate a long-term insurance option.
--:-- Sean Rameswaram: That was known as the CLAS Act, the Community Living Assistance Services and Supports. and that turned out to be not a financially viable program.
--:-- Noel King: They literally could not figure out the economics of that program to get it off the ground. And so it just sat on the books.
--:-- Sean Rameswaram: That was probably the most ambitious attempt to do anything around this issue. But a lot of our representatives in the Senate, the sitting president, the three leading Democratic candidates for president are like 70 plus. They're boomers.
--:-- Noel King: Does it surprise you that they don't talk more about this issue? It depends on your personal experience. Are you somebody who has had family members or experienced health issues yourself where you have seen these struggles firsthand?
--:-- Sean Rameswaram: Many of our Democratic frontrunners are very wealthy people who will never have experienced the kinds of economic strains that I've been talking about. So I'm not sure age is the important indicator here so much as personal experience.
--:-- Noel King: I mean, while we're on the Democratic frontrunners, one of the things that keeps coming up on the debate stage, and I'm sure it'll come up tonight, is Medicare for all. Is that a potential solution here?
--:-- Sean Rameswaram: Absolutely. So expanding Medicare benefits to cover supportive services is sort of the most obvious possibility.
--:-- Noel King: Expanding Medicaid eligibility so that more than the very poor have access to Medicaid services. but also subsidizing things like in-home supportive services or adult daycare or respite care so that people have access to those services more readily.
--:-- Sean Rameswaram: All of those are things that I think families in this situation would value and appreciate.
--:-- Noel King: Sandra Levitsky is a professor of sociology at the University of Michigan. She's also the author of the book Caring for Our Own, Why There is No Political Demand for New American Social Welfare Rights.
--:-- Sean Rameswaram: I'm Sean Rameswaram. This is Today Explained. The show is produced in association with Stitcher and is part of the Vox Media Podcast Network.
--:-- Noel King: Halima Shah, Bridget McCarthy, Amina Alsadi, and Noam Hassenfeld produce it. Noam makes music too. The rest of the music you hear mostly comes from the mysterious Breakmaster Cylinder.
--:-- Sean Rameswaram: Afim Shapiro is our engineer. Irene Noguchi is our executive producer. Olivia Ekstrom keeps us factual.
--:-- Noel King: And we had extra help this week from Zach St. Louis. Jelani Carter was late to his holiday party in New York last night just for us. It's a favor we won't soon forget. Happy holidays, Jelani.
--:-- Sean Rameswaram: You
