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Brigid Bergin: It's The Brian Lehrer Show on WNYC. Welcome back, everybody. I'm Brigid Bergin filling in for Brian Lehrer today. How much have you thought about how you will afford to grow old? We spend a lot of time thinking about how to care for our health in the present, but as we age, more and more of us are often faced with daunting decisions about how to care for ourselves and our loved ones with no real support system in place.

Sure, there's Medicare and Medicaid, two federal programs that provide some support, but with the rising price of healthcare, nursing homes, and assisted living facilities, there are still huge gaps that can lead to truly startling outcomes. In fact, a new report finds that Americans who needed to live in long term care facilities were more likely to die broke. That's just one of the findings in a series from the New York Times, and KFF Health News formerly known as the Kaiser Family Foundation. It's called Dying Broke, and examines the patchwork of solutions Americans are forced to rely on as they age or while caring for aging loved ones.

Joining me now to unpack some of the findings in this report is Reed Abelson, The New York Times healthcare reporter, along with her reporting partner, Jordan Rau of KFF Health News. She interviewed dozens of families about their experiences with long term care in this country. Reed, thank you so much for joining me today.

Reed Abelson: Thank you for having me.

Brigid Bergin: Listeners, are you taking care of an aging loved one? What is the experience been like for you? What kinds of financial decisions did you have to make? Did you have to dip into your retirement savings earlier than expected to pay for the costs of caring for a loved one in a long term care facility, or did you have to make changes to your personal or professional life to care for a loved one at home? Call us at 212-433-9692. That's 212-433-WNYC. You can also text or tweet @BrianLehrer.

Reed as a healthcare reporter, you have covered these issues for a long time. I know you've looked at the rising cost of health care writ large, but what prompted you to report on this specific issue, the cost and really the burden of long term care in this country?

Reed Abelson: I think because it's a universal issue. What we found in talking to people is that nearly everyone we interviewed, including experts had a personal story about the struggles they had either to afford or to handle long term care for a loved one. Yet, it's an issue that really isn't particularly on the radar of Congress, it isn't something where we can point to an obvious solution. One of the compelling reasons to do this series was to delve deeply into this and try and get a discussion going among people.

Brigid Bergin: Some of this issue is a double-edged sword. You've got medical advances that are helping people live longer, but that also means a growing population of people 65 and older who may need this long term care. How is this population expected to grow in the near future?

Reed Abelson: The estimates are really stunning. By 2050, the population of Americans 65 and older is projected to increase by more than 10% to 86 million according to census estimates, and the number of people 85 and older will nearly triple to 19 million. It's obviously, as people get older and older, they often need care.

Brigid Bergin: You're talking about this problem on a massive scale, a huge population and yet, you describe our current long term care system as a patchwork, what are the elements of it?

Reed Abelson: Actually, I think a patchwork is almost kind. We really don't have much of a system. There is a private market for long term care insurance, but really it's a small minority of people who take advantage of that. A lot of the costs have to be borne personally, whether that's home care or assisted living. You do have government programs, as you mentioned, Medicare and Medicaid, but they really are limited. Medicare really doesn't cover long term care, and Medicaid is for the poor. People really can't have a lot of assets and income. We also saw it play out with spouses who had to sacrifice, because one of the partners was in nursing home paid by Medicaid.

Brigid Bergin: Can you talk a little bit more about what is driving some of the increased costs, either at these facilities and for this care writ large?

Reed Abelson: I think some of it is that this is a very dominated by private companies, including hedge funds and private equity. Those companies are in the business of making money, so some of the cost increases are that. It's also though, the labor issues. I don't think there's any question that the pandemic revealed a real shortage of good paying jobs. The fact that there's a shortage of people willing to do these jobs means that it's just very tough.

Again, the labor costs have also contributed to rising expenses. It's incredibly expensive. When we polled people, when KFF polled people, it's clear that people know they can't afford a nursing home that cost more than $100,000 a year. Even assisted living which can run 60,000 for many more in urban areas is really out of reach for people once you do multiple years.

Brigid Bergin: Your story includes some very difficult decisions, families across the country are making to care for their loved ones. You found that it was often partners and spouses, and then in families where there was children and daughters who were often responsible for the caretaking. In your interviews, how were women playing an outsized role in some of this caretaking?

Reed Abelson: There's no question that daughters are really- both the data suggests that, but our interviews suggest the daughters are taking a huge role. I talked to one woman who left a promising career to come back home to care for her mother full time. Jordan Rau, my colleague at KFF Health News, talked to a woman who had moved back into her childhood home for a while to take care of a parent. Daughters are often sacrificing their own careers to take care of loved ones, and it's really tough. You see how resilient people are. They try and find a way to care for people, but at the same time it's clear that there's just huge sacrifice, both financially and emotionally.

Brigid Bergin: I want to bring some of our listeners into this conversation. Let's go to Margaret in Toms River, New Jersey. Margaret, thanks for calling WNYC.

Margaret: Hi. I wanted to tell you about my father and about myself, because I'm now 67. My dad lived to be 93. He passed away two years ago. I had just retired from work and he said, "I can't live by myself anymore," so I came up from Virginia. I had worked for the federal government for 30 some odd years. I sold my townhouse, and my daughter who had just graduated from high school and I moved up to Toms River to take care of my dad.

It wasn't too bad for the first two years that we were here, and then the last six months, he couldn't walk around anymore. Every time I left the room, he would fall. I had hospice care, but they were only there a couple days a week for two hours and shots, barely enough time to go to the grocery store. Towards the end I had to hire an overnight nurse, because he was getting up in the middle of the night and wandering around and he kept falling, and I had to keep taking him to the emergency room every time he fell because he cut his head open, and this was during COVID.

I am 67 now. When I was 50, I did purchase long term care insurance. It stayed at the same rate for a long time, but it has really gone up in the last year. I don't want my daughter, who's only 23 at this point, to have to worry about me when I get to that point. I want to stay at home. I don't want to be shipped off somewhere. That was the promise I made to my dad. That's why he was at home when he passed away, and my mother had been to. It's really hard, because you think about how much money you've saved up and how quickly it's going, and are you to have enough to support yourself in your old age, and it's very scary. I heard you talking about, it's the girls in the family who wind up-- It was just me and my brother, he's passed away. It was me who wound up taking care of my dad. It's hard. It's a real hug.

Brigid Bergen: Margaret, thank you for your call and your story, and it sounds like you have taken on a lot for your family. Reed, reactions to that call? It certainly was reminiscent of the stories I read in your piece.

Reed Abelson: It was, yes. I hope people realize that they're not alone in their experiences. So many people are really struggling, but they don't talk about it with other people. I think these experiences are very common where a daughter, and sometimes a son, and sometimes a son-in-law really put nearly everything on hold to care for someone, because what's also very clear is that people really don't want to go into a facility unless they have to. It's a very time-consuming and emotionally draining and often financially draining situation to try and care for someone 24/7, especially as their needs increase at the end of their life.

Brigid Bergen: If you're just joining us, I'm Brigid Bergen from the WNYC newsroom. I'm filling in for Brian today, and my guest is New York Times healthcare reporter, Reed Abelson. We're talking about her new series that looks at the costs of long-term care in this country. We're taking your calls about your own experience, whether it's caring for a loved one or thinking about how you're going to take care of yourself as you age. The number's 212-433-9692, that's 212-433-WNYC. You can also text or tweet. Reed, the name of your series is called Dying Broke, and that is directly connected to one of the data points in the report related to people who need to live in assisted living facilities. What are some of the drivers that lead people to needing this care, and why has it become just so expensive?

Reed Abelson: I think one of the things that I think happens is we've found a lot of families who were dealing with individuals with dementia, some of whom were really not safe, and yet the cost of a facility could be astronomical. Some people did in fact care for people at home, but others felt really, they had no choice, and on some level, the real safety net is only for people who have basically spent down or had no assets. That's the focus in terms of Dying Broke. The data is pretty clear that a lot of folks, even people who are middle class who need long-term care for a long period, five years or more will eventually enroll in Medicaid, which is the actually, right now, the largest single source of funding for long-term care. There's even a stunning statistic from an analysis by the Urban Institute, almost half of upper middle class couples with lifetime earnings of more than $4.75 million will also end up on Medicaid. It's just because it just- round the clock care is very, very expensive. When you need it for long periods of time, you just go through your money.

Brigid Bergen: I want to bring Laura in Brooklyn into this conversation. I think her experience seems to echo some of what you're just describing, Reed. Laura, thanks for calling WNYC.

Laura: Hello. Yes, that's exactly what we're going through. My mother makes a very healthy retirement amount about $7,500 a month, and that is not enough to pay for care. We faced a health crisis in mid-May, and we have been trying to figure out a place for her to live since then. Right no, she is on the couch at our sister's rather than in a bed, in a safe environment, a clean environment. She's in a safe environment, for sure. She can't live in her home, because stairs are too much. She can't live in my home, because stairs. My brother's, stairs. We are facing the prospect of spending everything down so that she can be eligible for Medicaid.

Brigid Bergen: Laura, thank you so much for sharing your story, and good luck with what will be some, I think, difficult decisions going ahead. Reed, you found that in many instances that was part of what people had to do. That in order to qualify for Medicaid coverage, people needed to reduce their assets. Is that correct?

Reed Abelson: Yes, that's very much correct. I think what's very tough is sometimes you have a couple-- The question then becomes, well, do we spend everything down? Then what happens to the surviving spouse or partner? That's a truly difficult decision. We came across some families where the decision was to keep someone at home, even though at times that they were at risk. We found, in other cases, the decision was, yes, we'll spend down and hope for the best if the healthier spouse survives.

Brigid Bergen: In your reporting, Reed, you note that the US compared to other wealthy countries around the world really lags when it comes to national response and investment in long-term care, but just for our perspective, how far behind are we? How much does the US not invest in these needs?

Reed Abelson: It's interesting. I think we truly don't invest. We're behind a lot of other European countries. What's frustrating, obviously, is that there have been a series of attempts, but we've never had the political will and maybe even the cultural will to tackle this.

Brigid Bergen: That's very much why we're having this conversation, because obviously if we had better federal policies in place, we wouldn't be worried about the patchwork that doesn't seem to be holding together, but some policies have been proposed. What are some of the measures that Congress has considered and what political opposition have they faced?

Reed Abelson: I think there is an argument, and many Republicans argue this, that this is something where people really have a responsibility to save or to take other planning steps, like trying to find a long-term care insurance policy. Congress has tried to address this. President Biden tried to increase some funding so that caregivers were paid more, but that funding was dropped in the final legislation. The difficulty is that this costs money, and so far there just really hasn't been an appetite to fund this kind of care.

Brigid Bergen: I want to go to Fred in Manhattan. Fred, thanks for calling WNYC.

Fred: Thank you for taking my call. I am a 67-year-old single son of someone who's about to turn 101. I took care of her sister, her brother, my father. I'm very good at it and I get them to very old ages in pretty good shape, but it has entirely ruined my career and my earning potential. A very specific recommendation that I would make, among many, is that Social Security benefits be provided or the credits be made for people who basically have given up their own work in order to care for others. If I were a paid caregiver, I would get Social Security benefits as someone who cannot be paid, because I'm a relative, I had to give up everything, and I do it out of love. I am proud that I've gotten my relatives to such good ages in such good shape, but there's no awareness of the next generation. When COVID came, we avoided COVID, but I had to basically lock down with my parent for four years and she's still alive and she's still managing, but cannot manage on her own even for five minutes. It requires constant presence.

Brigid Bergen: Fred, thank you so much for your call, and thank you for everything that you're doing for your family. They are very lucky to have you. Reed, what I think Fred is suggesting there in terms of a credit sounds similar to what you said President Biden had attempted to include in The Build Back Better, but it seems to be very hard to get the political will to support those kinds of policies.

Reed Abelson: Yes. I think it is possible that there could be specific changes to things like Social Security or trying to do tax credits. I know under Medicaid, some Medicaid programs, family members who are caregivers can get paid, but it's very difficult. We don't take a step back and think broadly about how to make lives better for people. I do want to echo that one of the true findings was that even when children managed to get their parents through, they were convinced and probably appropriately so, that their own retirement years and older years would be really really much more challenging. That they had either spent a lot of money, that they didn't have a pension, that there were a lot of factors that were going to make it even more difficult for them.

Brigid Bergin: There's so much that is in this series that we could talk for a very long time, but I wanted to spend a little bit of time seeing if we can offer some news or information people can use. One of the findings that I was struck by was that fewer than half of American adults have seriously discussed long-term plans with a loved one. From your reporting from everyone you spoke to, what conversations do you think people should be having, and when should they be having them?

Reed Abelson: I think they should be having them early on before there's a crisis. It's absolutely true that we spoke to a lot of families who were in a crisis mode having never really talked to their parents about what their financial situation was, and even more importantly, what their wishes were. I think that that's a conversation definitely worth having. Thinking about, are there steps that one can take now to make it easier later? What can they do? How can they think about this? I agree with you. That was stunning to me, that more people hadn't had that discussion.

Brigid Bergin: We have a lot of callers on the line with experiences and suggestions. I want to go to Judith in the Bronx. Judith, thanks for calling WNYC.

Judith: Thank you for having me on. I am actually an intake nurse with a managed long-term care plan. I have been doing home care for nine years. I just wanted to direct people to say that there's a program called Consumer Directed Personal Assistance Services or CDPAS, where if your family member has Medicaid, you can actually be paid to take care of them. I think it's starting at least $20 an hour, but your family member can pick you or a friend or whomever to be their home attendant. That's an option.

As she was saying, I do want to echo it is important to set all this up early. Because, yes, it's very challenging. I see a whole slew of things, people who have to quit their jobs, and suddenly they have a hard time paying the rent, et cetera. At least this is an option where your family member can care for you in your home for as long as that's feasible. That's my two cents.

Brigid Bergin: Judith, thanks so much for your call. Thanks for your work too. I want to go to Kyle in Williamsburg. Kyle has a different perspective. We've heard from some older listeners who are taking care of loved ones. Kyle, what's your experience, and how is this conversation resonating with you?

Kyle: Well, I watched my mother who was an only child take care of her parents, and they were both divorced so it's not like one parent was around to help the other. The last one has recently passed, but I'm an only child. I'm clear whatever. I may never have a partner. I might just be alone. I've gone to college. I have a master's degree. I can't seem to make a career stick. I have no savings. I have nothing. What recourse is there for me if I just keep falling backwards through life? I just can't make things work.

Brigid Bergin: Kyle, I appreciate your openness with that question, and Reed, Kyle is echoing that finding that was also in the report that a majority of respondents in this case, 50 or older, said that they were worried about paying for care, and hadn't done research on what kinds of options. For someone who is trying to navigate this space, are there suggestions for how someone might begin, particularly someone who may not have the ability to rely on family as a caretaker?

Reed Abelson: I would suggest going to state and local government agencies and starting there, to try and find out what resources might be available. I also do want to emphasize that as problematic as Medicaid is and does serve as a real safety net so people do have options. I think the best thing to do is as you point out, to try and inform yourself as much as possible, about what steps you might be able to take and what programs there might be available.

Brigid Bergin: Kyle, thank you so much for calling. Let's go to Nancy in Queens. Nancy, thanks for calling WNYC.

Nancy: Hi. Thanks for taking the call. I was just wondering, first of all, when you talk about spending down, what does that mean? Also, if I am going to try to purchase long-term care for myself since I don't have really any other options, should I need it, what is recommended? How much for how long? Those are my questions. Thank you.

Brigid Bergin: Nancy, thanks for your call. Reed any-- Go ahead.

Reed Abelson: Yes. It's a difficult question, because it's so depends on the specifics. I know that a lot of people consult with elder care lawyers and financial advisors to get good advice. Medicaid is a very complicated system. A lot of the rules vary state by state. Basically, either through planning or other means, you have to have very little in assets and very little in income to qualify.

One of the points of the story is that many people end up making too much to qualify for Medicaid. Then the other in terms of long-term care insurance again, I would say that you obviously want a stable insurer. The specifics your best bet would be to go to a financial planner or lawyer who has both a lot of experience and is trusted in these areas.

Brigid Bergin: Reed, a listener texted us an issue I think you covered in your reporting. The listener writes, "Hey, there. Can our current guests touch upon the look-back issues? When parents gift their property to children to make themselves broke to get health care coverage, there's some time that needs to pass after that gift happens. Can you explain that?"

Reed Abelson: Yes. I can't in huge detail, but I think generally, it can be something like five years. Unfortunately, often again, what happens is that a crisis occurs, and people realize it's too late to try and protect their assets. Again, I think the sooner you can have those conversations, and the sooner you can consult with legal and financial advisors, the better off you are.

Brigid Bergin: Well, we will leave it there for now. Reed Abelson reports on healthcare for The New York Times. She and her reporting partner Jordan Rau of KFF Health News, wrote this series Dying Broke on the cost of long-term care in this country. Reed, thank you so much for your time.

Reed Abelson: No, thank you.

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