This is FRESH AIR. I’m Tonya Mosley. Something has shifted in my conversations with friends lately. We still talk about work and our kids, but more and more, we also talk about our parents – whether it’s safe for them to keep living alone, who’s taking them to the doctor, how much help they really need, and who’s going to pay for it. It turns out a lot of us are paying for it ourselves. A new study from AARP finds that family caregivers are spending nearly 60% more out of their own pockets than they were just five years ago.

And the timing matters. The oldest baby boomers turn 80 this year. They’re the leading edge of a generation so large that the number of Americans 80 and older is expected to double in the next two decades. That means millions more people likely to need care just as nursing homes are losing beds, professional caregivers are in short supply and Medicare provides limited coverage, if any, for long-term care. We’ve known for decades that this was coming. But knowing doesn’t necessarily mean families are prepared for what lies ahead.

My guest, Paula Span, has spent nearly two decades reporting on aging for The New York Times in partnership with KFF Health News. She writes about the hard choices families face, the gaps in our elder care system and the inventive ways Americans care for one another. Paula Span, welcome to FRESH AIR.

PAULA SPAN: I’m so glad to be with you to talk about this, Tonya.

MOSLEY: According to the study, and so many people know and understand this, the burden is particularly heavy for lower-income families. What do families sacrifice when care takes up so much of their budget?

SPAN: It’s harder for low-income families. And it’s harder for anyone whose loved one has dementia. So most of these family caregivers are trying to hold onto their jobs – they’re still working. But as the loved one’s care needs increase, they have to take days off. They might turn down promotions or limit their travel. Sometimes they cut back to part-time work. And sometimes they leave the workforce altogether, which then imperils their own financial futures because they have no income for a while and because they’re not earning credits towards Social Security.

And this analysis is not looking at the cost of elder care itself if, besides the family, someone is using home care or is in an adult day program. So I looked up the most recent cost figures. This comes from an annual survey by the insurance company Genworth and CareScout. If you are paying a home care aid – not a nurse, but someone to help with bathing, dressing, making meals, using the toilet, this is what we call long-term care. And it’s what most people actually need. A home care aid is going to be $35 an hour. That’s the national average.

An adult day program, which is an unrecognized bargain, in my opinion, is $95 a day. Assisted living, you’re looking at $6,200 a month. A nursing home, that’s the most expensive form of elder care, $9,600 a month and you get a roommate. If you want a private room, it’s more expensive. And this national average conceals some big geographic variations. So Assisted living may run you $6,300 a month in Birmingham, Alabama. But if you’re in Boston, it’s closer to 10 grand.

MOSLEY: You mentioned adult daycare. Can you describe what that is?

SPAN: Adult day programs. I find that a lot of people don’t know about this, but there are thousands of them around the country. It’s a program in which the elder person goes to a center of some kind with other older people. And there are activities, and there are meals, and often there’s a nurse on site, not always. There are discussion groups. They do art. They do exercise. And then the center usually provides transportation, brings you there, takes you home. So that if you’re the working caregiver, you feel that your elder is engaged with other people, not sitting at home alone watching TV, and is in safe hands until the end of the day.

And, you know, it feels funny to call something that costs a hundred bucks a day a bargain, but compared to other forms of caregiving, it is. And I find that most people don’t know about it. Plus, you don’t have to use this every day. Maybe it’s two days a week or three. And Medicaid can cover this often. And if you’re a veteran, there are special programs and discounts for you also.

MOSLEY: You’ve actually written about helping your father move into a retirement community. And later, you helped your sister move into assisted living. How did all those years of reporting on aging prepare you?

SPAN: So I will say that both my parents made it comparatively easy because they did not have long years of disability. They were OK, and then something happened and they weren’t OK, and they died fairly quickly. So it’s odd to think of that as easy or making my life easier. But compared to people who are caring for parents for four years, six years, eight years, it was simple.

And also, I got to say, my parents were very realistic. They weren’t the ones saying, the only way I’m leaving my house is feet first. They had already moved from a house to an apartment. My father said he didn’t want to stay at home alone. It was too isolating. And so we started looking at assisted living. And it was cheaper down where he lived, compared to where I lived.

But then he thought, well, if something happens, I’m just going to have to move anyway. So we moved him from south Jersey, about 100 miles north to north Jersey, where I was. And I used one of these folks called a geriatric care manager. They’re now called aging life care managers. But when you hear adult children, especially daughters, who are maybe flying back and forth to Florida or giving up their weekends to take care of their mother, and they say, I wish I could clone myself, this is how you clone yourself.

Now, my sister and I shared the cost. We hired one of these folks. They are usually nurses or social workers who have additional training and certification. And they’re the ones who know, well, which assisted living in this particular area is the good one? Which home care agency should I call? Who’s going to get on the phone and fight with Medicare about this bill? How do I arrange to get my father to the dentist when he shouldn’t be driving? So we hired one of these folks to help us because when we started having little tiffs about whether he really needed to take both of his flashlights or whether one was enough, sometimes it’s easier for elders to listen to another person besides their own kids.

So she helped us move. She helped us find the facility that he moved into up near me. It went fairly smoothly, I have to say. But, of course, it’s never easy to see the people that you’ve looked up to or depended on your whole life now need your help and be dependent. You know, America, we really value independence. And parents will and other elders will downright lie and tell you on the phone that they’re fine and they’re handling everything, and you can just butt out, thank you. And then you go home for Thanksgiving or Christmas, and you see the reality and think things are not fine.

MOSLEY: Geriatric care managing, is it expensive?

SPAN: It looks expensive. I think people may misunderstand what they do. So I wrote about these folks, geriatric care managers. They’re now called aging life care managers. And if people want to find out if there are some in their local community, there’s a locator on the Aging Life Care Association website. So yes, they charge $150 to $300 an hour, depending on where they are.

But they’re not the people that are making you a sandwich or helping you get dressed. They’re the people who are coordinating all of those other services. So they can do a lot in an hour, and you don’t need them 10 hours a week or even 10 hours a month.

So in my case, when I needed help for my father or when my sister needed help, they were on the job – these care managers – to help them move from their homes into assisted living. But after that, they stopped by, you know, once a month or every other week just to check on them. And for me, I was sure that every time I left home for a vacation or a business trip, that’s when my dad would get sick. And I was worried about this. And so to have someone else local that I could call and say, gosh. I’m in Tuscaloosa, and my dad’s having chest pains – and they would leap into action.

So it is expensive. And when I wrote about it – you know, we enable comments on “The New Old Age” in The New York Times. And, you know, a bunch of people said, hey, I never knew about these people. That’s great. Thank you. They call themselves – these care managers call themselves the best-kept secret in elder care. But a bunch of other commenters were saying, oh, thanks a lot, Paula. Another service for rich people.

MOSLEY: Right. Yeah.

SPAN: And, you know, yes. It – you know, there are more services for – not necessarily rich people, but people with money. I’m not a rich person, but my sister and I split the cost of having this available for my dad, and we could handle it.

MOSLEY: You know, I’m listening to you, and I’m also thinking about – in the case of your loved ones, it sounds like you had to get everything right, though. You had this case manager, so that helped you. But missing one piece of paperwork, for instance, or not knowing the full details of your parents’ health conditions or how they’re handling their business could completely derail what you’re able to offer them and how you’re able to help.

SPAN: Well, nobody is really prepared for this. You know, there was a survey a couple of years ago by KFF, which is a nonprofit health research organization. And it asked a bunch of people, have you ever had a serious conversation with your loved ones about what would happen if you needed care and who would provide it in the years ahead? And most of them said, no. We don’t talk about that. And then the kicker – yeah. KFF asked this group, well, would it be possible for you to pay $100,000 a year for a nursing home or $60,000 a year for assistance at home? Could you do that? And the overwhelming response was, essentially, are you serious? Who can do that?

So we’re laboring with a lot of misconceptions and evasions because we don’t want to think about being dependent and being old and asking our kids or our siblings or someone else for help. One of the misconceptions you mentioned is that a big proportion of people think that when you need this kind of help, you will turn to Medicare. But Medicare does not pay for this kind of long-term care except for brief coverage after hospitalization. Not the kind of…

MOSLEY: Why?

SPAN: …Daily help. It’s just never been part of the benefit. So Medicare pays for hospitals and doctors and medical care. But what most people need as they age, if they need it, is not medical care but nonmedical care. Help me to the bathroom. Help me get dressed. Help me in the shower so I don’t fall and break something. I’m not so good at making meals anymore. This is what we call long-term care. And the data shows that something like two-thirds of us will need this, and we’ll need it for an average of three years. So if Medicare doesn’t pay for that, well, then who does pay for that?

MOSLEY: Well, that’s – yes, because, I mean, I’ve heard that Medicaid can become the safety net. But what happens if you’ve worked your entire life, you’ve saved some money and now you have too much money to qualify for Medicaid, but you really don’t have enough to pay for years and years of care?

SPAN: Well, Medicaid is the safety net if you are very low-income. You basically – to become eligible, you basically have to impoverish yourself. You can hold on to a house, but you have to have something like $2,000 in assets. So it’s hard to get, and Medicaid has a waiting list in most states that can be months or years. Plus, the Trump administration budget calls for slashing Medicaid expenditures over the next decade by about a trillion bucks.

So we have this disparity – it’s something of a familiar one – where if you have means, you can pay for your own care or your parents’ care. You can pay for assisted living or a nursing home or home care. And if you’re very poor, you can rely on Medicaid, though it’s not always instantly there when you need it. But most people are in the middle somewhere, and who pays for them? Well, they’re essentially on their own.

MOSLEY: My guest is Paula Span. She writes “The New Old Age” column for The New York Times in partnership with KFF Health News and is the author of “When The Time Comes,” a book about families making difficult decisions about caring for aging parents. We’ll continue our conversation after a short break. This is FRESH AIR.

(SOUNDBITE OF RHYTHM FUTURE QUARTET’S “IBERIAN SUNRISE”)

MOSLEY: This is FRESH AIR. And today, I’m talking with journalist Paula Span, who has spent nearly two decades reporting on aging and elder care. She writes “The New Old Age” column for The New York Times and KFF Health News. She previously spent 16 years as a correspondent and magazine writer for The Washington Post.

So let’s talk a little bit about how families pay if they are not at the lower rung economically and they don’t have wealth to be able to care for their loved one. This AARP study found that adult children are sometimes borrowing. Some are pulling from their own retirement accounts. How often does caring for a parent end up costing someone their own retirement?

SPAN: I’ve not seen any data on that, but families are just trying to patch it together however they can. And it’s harder than it used to be in decades past because families are smaller. You know, people have fewer children. So if you had four kids, maybe they could divide up the duties and share the expenses. But if you have one or two, that’s harder. It goes on for longer because medical science can keep us alive longer. And we’re asked to do things that nurses used to have to do, like give injections, manage medications, maybe even administer things intravenously.

So it’s tough, and I think people scramble. They borrow where they can. Sometimes the parents do have money – not enough, but some – so they tap that. People switch off care so that you can take a break. Maybe your sister comes and stays for two weeks so you can have a few days off. But I don’t think there’s any magic wand. People suffer.

MOSLEY: It’s suffering, absolutely, because I’m also just thinking about, OK. You might have enough money to pay for the care of your loved one for, say, a few years, four or five years. But then, after that, you’re going to completely dry up any type of wealth or savings that you have to continue to keep them comfortable. And you don’t want them to die, but you have to deal with this reality that you’re putting your own future in jeopardy. What have you found in your reporting about what the realities are for people who spend so many years doing this and their outcomes on the other side of it?

SPAN: I mean, there are times when, if it’s a peaceful death, it comes as a source of sorrow but also of relief because this stress on both the elder, who’s not well, and on the people taking care of them is so intense. And to have it end, and if it ends in a way that people can live with, is sometimes a blessing. But I also think families need to be aware that not every older person actually wants to live forever and that the medical system is geared towards keeping people alive at all costs, unless you have a palliative-care physician, which is a great thing to have, who helps people just manage the symptoms and is not trying to keep people alive forever. Or if you have a geriatrician, who’s – like, a pediatrician is the doctor for kids, right? A geriatrician is the doctor for older people, and they have a more holistic view.

But it is not necessarily in an older person’s interest to pursue every possible attempt at cure, and older people have said this themselves. There have been studies on this – would you give up a year of your life to pursue some experimental treatment or procedure? And often people say, like, no. I’ve had enough. I’ve had a good life. I feel that my life is complete. We don’t have to keep pursuing this. You can stop dialysis. You can not start dialysis. You can say, no. I don’t want more chemotherapy. You can have some control if you have mental capacity, and your family can support you in this.

Often, geriatricians tell me it’s not the older person him- or herself, but it’s the family that is saying, no. We have to try something else. We can’t just stop. But you can stop. And personally, I have made hyper-clear to my one and only daughter that, you know, the answer to almost everything if I’m truly sick and at advanced age is, no, thank you.

MOSLEY: Sounds like you and your daughter have had the conversation that many families have a hard time having.

SPAN: Well, we couldn’t avoid it when I’ve been doing this work for so long. So yes. We’ve had many conversations, and she knows exactly what to do and not do. And – but she did say, Mom, do you have to keep your advance directive on the refrigerator (laughter)?

MOSLEY: Oh my gosh.

MOSLEY: You keep it on the refrigerator (laughter)?

SPAN: I said, yes, that’s where I have to keep it because if I go down and the EMTs come in, that’s where they’re going to look. So she said, OK.

MOSLEY: Is that your advice to people?

SPAN: Well, first of all, older people should have advance directives that tell their families what is important to them and what they want and don’t want. You need to appoint someone that you trust – doesn’t need to be a family member – to be your healthcare proxy, to make decisions for you if you’re incapacitated and you can’t make them for yourself.

And then if you have a serious illness and it seems that death is a real possibility, then you need a different kind of advance directive that every state has and is either called a POLST or a MOLST. It’s Physician Orders for Life-Sustaining Treatment. That’s what it stands for. And it’s even more detailed. So, do you want antibiotics? Yes/no. Do you want cancer treatment? Yes/no. Like, spell it out for us. Because we do have some control. If we have mental capacity, we do have some control over what we’re willing to undergo and not.

MOSLEY: Our guest today is journalist Paula Span. We’ll be right back after a short break. I’m Tonya Mosley, and this is FRESH AIR.

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