Best Of: Our Health Care System Isn’t Built for You to Get Old

This is The Opinions, a show that brings you a mix of voices for New York Times Opinion. You've heard the news, here's what to make of it. I'm Michelle Coderva and I'm an audio producer on this show and today I'm in conversation with New York Times Opinion writer Michelle Coddle. So Michelle usually covers politics but in the last few years she's also written several pieces related to aging in America. Most recently she wrote a personal piece about caregiving for her father in the final months of his life and the troubling state of the US caregiving system. More than 2,000 people responded to her essay to share their own stories. I took care of my husband for 15 months at home after he had spent 179 days in the hospital. And I took care of my father who had congestive heart failure, stage 3 kidney disease and later was diagnosed with brain cancer. My mom currently 99 arrived legally blind, hard of hearing and with congestive heart failure. Now Michelle and I have something in common. I also lost my father last year after a long battle with dementia and so I wanted to speak with Michelle about what she learned in her reporting and about the growing caregiving crisis in the US. Michelle, welcome. Thank you, Vishaka. I'm very excited to talk to you. Michelle, to start, could you walk me through your father's story? Sure. So my dad had always been very independent, very sharp. He was 78 and had been taking care of himself but also helping my mom who has had like every medical issue under the sun. It feels like. And so when he was diagnosed in August of 2024 with some fairly significant bladder cancer, we were thinking in terms of aggressive treatment. But as things went on, they're started to be issues with cognition. Also whenever you're in these kinds of treatments, you wind up with infections, you're get unbalanced, you're prone to falls. So he was having all these usual issues that can be a problem, especially for older patients. And he wound up in the hospital and wound up with what we thought was a pretty serious case of hospital delirium. But it eventually got so bad that his oncologist sent him for a neurological assessment at which point they realized he also had Alzheimer's, at which point everything just spiraled. You immediately shift gears from thinking in terms of beating back the cancer to what they call comfort care, you back off aggressive treatment, and you're trying to help a patient be as comfortable as possible, basically while they're dying. So this was the trajectory. What happens in a lot of cases is the physical and cognitive issues play off each other and make each other worse. And we definitely had that with my dad. Was there a specific moment where you realized that maybe we're not coming back from this? This has changed how things are going to look. For me, with my dad who had early onset dementia, there was a moment in 2017 where this was a year before he was diagnosed. But we were watching Zootopia, great movie, I really wanted to watch it for some reason. And he couldn't recall a single scene after we were done watching the movie. Like 10 minutes after I was talking to him about certain scenes and he just couldn't remember anything. And that's when I knew something shifting and probably forever. So was there a certain moment like that for you? So yeah, so originally we weren't that concerned about the cognitive slippage because the kind of chemo he was on, we had been warned, could produce these kinds of glitches. And we had actually been told to be on the lookout for them. So we would have these weird moments like he would get lost driving himself to an appointment and then deny anything had happened or he was at the ER waiting to be treated one night and became 100% convinced that he was waiting in line to reenlist in the Navy. But the minute they diagnosed him with Alzheimer's, we knew. This was his greatest fear. It runs in my dad's family. He had watched his younger brother struggle with it for over a decade. And at that point, you know, the doctors had said that he was no longer a good candidate for major surgery and kind of the aggressive chemo that would be required to deal with the cancer. But my dad didn't want it anyway. He would not want to have his body put through all that while his brain was basically betraying him. So at that point, we knew that everything was different. But we still had to talk to him about this because the doctor at that point didn't tell my dad what the diagnosis was. And so my sister and I were left deciding to sit down and break it to our father. And his absolute worst fear had come true, which I got to say do not recommend, like not a great conversation, but that's when we knew it was different. And we were in a different world, you know. Yeah. Yeah, I want to talk about that shift. You know, when we asked readers about their feelings, they cited everything from exhaustion and isolation to needing to stay strong and resilient and brave. It was the hardest thing emotionally and physically I have ever done in my entire life. And some days I cry, other days I swear a lot. What struck me is that other people might age in their early 30s couldn't relate. We all have the capacity to be brave. We just have to dig deep down inside ourselves to find it. And so how did it make you feel when you realized the gravity of caretaking, you know, especially for your father who was in the final months of his life? So this came in stages, you know, we started out thinking, oh my god, we've got to help our parents navigate just the basic healthcare system of a complicated disease. So we started out thinking, okay, we're going to get dad well. And then it kind of gradually got more and more serious. At every stage, part of it was just like, not panic, but just like this sense of disbelief at how confusing and chaotic it could be. Like we started this text chain, my sister and my brother alone and I, to swap daily updates. So we would have these sometimes really kind of dark humor exchanges about like, oh my god, he's gone rogue, he's driving into a bad part of Houston, he's gotten lost, he's ignoring phone calls, and then later it's like, oh my god, he called, he thinks he's playing poker with his dead brothers. You had to have somebody to talk through the disbelief at how crazy things got or you would just go crazy on some level. And so I found this with a lot of people, like I'm at the age where almost all of my friends are dealing with something similar and sometimes, you know, we'll just get on the phone and we're like, oh my god, like let's just go through the recital of the crazy of what's happening. And it's an emotional release of sorts, it's a safety valve. And I think everybody needs that. And when I've talked to caregiving experts and professionals and things like that, they agree that this is the thing that most people underestimate the need for and you should not try to grind this out alone. I'm really glad you brought that up because that's where I wanted to go next. You know, as you talked about kind of sharing that humor, I remember my mom and I would try to find joy in little moments. There was this one time my dad wore a pair of jeans, my jeans, which we only realized when he was walking around and we were like, wait, that doesn't look right. And he refused to take it off. He was just like, no, this is mine. And then we just laughed for like 10 minutes straight because it looked so funny and it was also kind of cute that he was just like, this is now my pair of jeans. And you know, it's always nice to have someone to share that with. You know, a lot of caregiving does happen in isolation and you know, people don't really want to think about it or talk about it unless they're actually facing it themselves. And you know, it can make it really lonely. And it feels like there's a real hunger to connect about these topics. And I think we saw that in your piece, you know, your essay had more than 2,000 people respond to talk about their own experiences of caregiving. Could you walk us through some of the big themes that emerged in these responses? Absolutely. So as you might imagine, lots of people had similar situations where they just were overwhelmed by what they found themselves dealing with, whether we're talking about logistics. I'm an only child who lives in a different country. Suddenly, I am traveling back and forth from Ottawa to Vermont to take care of my dad. Or finances. I quit my job. I just couldn't take care of him and my twin toddlers and work all at the same time. Or in some cases, just. the emotional toll this takes from watching a loved one decline. Some days she sets up breakfast on her own, but on days she needs to be reminded it's breakfast, not dinner, and she makes some sarcastic comments after I remind her of something. I get frustrated and we both end up in tears. I'm on crutches from a painful revision to knee replacement. After the caregiver burden is on my frame wife who has severe arthritis, we are both experiencing significant depression. And so lots of stories along those lines. Then on the flip side, I was kind of gratified that some of the people had latched on to the dark humor that I talked about in my own experience, finding humor in the little things, or just huddling up with other family members to either reminisce or just talk through things that were going on that are kind of head smacking. Yeah, you know, it's so hard. Like you said, there's the emotional aspect of it, the loneliness aspect of it, and then there's the financial aspect of it, which is something I want to get into. So what were people's biggest struggles? So the majority of long-term care, if you're talking about chronic illness or just age or somebody to watch a parent who's got progressive dementia, but not to the point where they need full-time nursing care, that is usually handled by Medicaid. If you are eligible for Medicaid, Medicaid is a poverty program. You have to meet the criteria for it. There are lots of ways to manage this. People have to spin down their assets a lot of times in order to qualify for Medicaid, which means you basically have to impoverse yourself in certain cases in order to qualify, which seems completely backwards for people who've been saving their whole lives to deal with their retirement. Also, Medicaid does not guarantee you in-home healthcare. You can only get that if the need kind of meets the supply, otherwise it's only required to put you in a nursing home, which is what most people want to avoid at all costs. For people who are kind of middle-class and don't qualify for Medicaid, you have to cobble together some sort of system of unpaid help. I know people who quit their jobs moved in with their parents. I know people whose grown kids were taking turns driving to medical appointments or staying with parents at different shifts. The studies on the toll that it takes on caregivers, both emotional and physical, like because that's so closely connected. The risk of illness, serious illness, tends to be higher among caregivers, especially those who are dealing with people with dementia. It becomes even more complicated. So, it's not a great system, even for people who are financially solid. Look, do we have anything in place, societally, on an economic sense to handle this crisis? And how far away are we from that goal? Okay, so the short answer is no. It's hard to get politicians to pay attention to this issue for a variety of reasons, one of which being, and this sounds really stupid. There's no villain. Often in politics, it's easy to gen up attention for it if you've got a bad guy on the other side of this. There's not one. And also, families feel very ambivalent about, well, I should be handling this myself. They're my parents. It's my obligations. So, they don't even think in terms of a social safety net for this. And then, again, most people don't want to think about it at all until they're in the middle of it. So panic, they don't have time to do anything except deal with the emergency situation. There are a couple of ways that people in Congress that I know of have thought about dealing with this that are bumping around. One would be to revive the long-term care insurance market, which, once upon a time, a couple of decades ago, this was a thing like you buy health insurance or car insurance or home insurance. You could buy long-term care insurance. But it was set up in a way that wasn't really suited for the long haul. And so, it became financially not that sustainable for the insurance companies. And so, it kind of petered out. So, there are people in Congress who have thought about ways to revive that. Tax credits for family care providers are something that aging advocates are really keen on, and Donald Trump, a week before the 2024 election, found that he was finally going to get these past, that he was going to take care of neglected family caregivers, which, nah, it's not happens. Like, you can come through the processes of the one big, beautiful bill or whatever. And this just, like, this was not a priority and it didn't get in there. And so, you know, promise denied. And then, of course, if you look at the other end of the spectrum, which is professional paid caregivers, they are scarce. The pay is bad. The risk of injury is pretty high. People don't think about this. If you're dealing with dementia patients, sometimes they're frustrated and scared and angry. My dad on a number of occasions was trying to throw his caregivers out of the house when he's like, why are these strange people here and what are they doing and why are they bothering me? So, there's a lot of risk, physical risk that goes with this job. And the compensation is not great. The possibilities for advancement aren't great. And so you have really high turnover. It's poised to get much worse because the reality is the people who overwhelmingly punch above their weight in this field, like they represent a bigger percentage of caregivers than they are in the population is immigrants. And so if you happen to be in a moment where a president is trying to cut the immigrant population, I already have heard stories and talked to agencies where their labor force is shrinking because these people are scared to come to work or getting their protected status pulled or any other number of reasons why they are no longer available. So, instead of getting better, that piece of this is in line to get worse. Yeah. You know, given this current political scenario that we're in right now, do you see the future of elder care, changing, getting worse, staying the same in this political system? You know, with like financial strain, physical burdens, and no respite from the state, is this how it's going to go? So, the demographics alone are a little bit terrifying. I think it's something like every day and average of 10,000 people turn 65. Wow. The boomers are getting older and the number of kids people are having in the US are shrinking and people are living longer. And so it's combined to create this perfect storm and I don't see anybody much working to seriously address a situation that is expected to get worse, you know, for the foreseeable future. And for like another couple of decades, before it could even have a chance, demographically, like the math is just overwhelming as the baby boomer generation gets older. Right. And I think that's the perfect segue into what I want to end this conversation on, which is talking about the future and people's personal futures. So, you know, one of the biggest concerns that came up often in the audience responses was what happens to caregivers as they start thinking about their own future, you know, some people said they were feeling depressed. Some even mentioned a medically assisted suicide while others talked about getting really intense about saving their money. Michelle, I was curious how you're thinking about your own future. Okay. So, this will sound weird, but well before my dad got sick, I was reporting on things and one of the things that I was reporting on in terms of the aging situation was like different models for where you live as you age. So I have been to the villages in Florida. I have been to Portland to look into these kind of communities that have popped up mostly populated by older residents. I have been to look at kind of low income communities where you have seniors on site, but also like younger families who need help. And so everybody works together to kind of seniors take care of the kids while the parents are working or help drive them. I've looked at all these different models and I have started looking at these models with an eye toward, okay, what am I going to want to do? one of the biggest concerns with older people is that they will become isolated which is incredibly bad for their mental health but also just dangerous. So I am very mindful of the need to remain social and active and when I visit these places, the people who are the happiest seem to be those who just kind of have thrown themselves into this next phase of life. And so I'm already planning. For other people, you know, everybody has their own preferences, but I think my biggest advice is to don't ignore this until it becomes a problem. So I just like can't stress enough how much you need to plan ahead of time. Talk to your families about it. It's awkward. It's not fun, but it is necessary if you want to save yourself and your loved ones a lot of extra pain down the road. And also, there are a lot of things that I learned from friends in the medical field who deal with older patients, but also from the doctors themselves about what not to do with Alzheimer's patients. So trying to correct them or make them remember hard facts like when my dad thought his dead brothers were there with him, you don't correct them. There's a lot of little things like that that you don't know because why would you? So don't grind this out by yourself. That's my number one piece of advice. And just give yourself some grace. Take care of yourself. You can run yourself ragged and you can beat yourself up because you're not going to be perfect at this and you're going to drop the ball sometimes. But you're doing the best you can. On that note, thank you so much for speaking with me about a topic that's usually very hard to talk about. Thank you so much. As you know, I am obsessive about talking about this. I really appreciate it. And I also wanted to say a big thank you to everyone who reached out to us with their own stories of caregiving. Thank you so much. If you like this show, follow it on YouTube, Spotify, or Apple. The opinions is produced by Derek Arthur, Vashaka Darba, and Jillian Weinberger. It's edited by Kari Pitkin and Alison Brusik, mixing by Daniel Ramirez, original music by Isaac Jones, Sonia Herrero, Pat McCusker, Carol Saburo, Epheme Shapiro, and Amin Sahota. The fact-check team is Kate Sinclair, Mary Marge Locker, and Michelle Harris. The head of operations is Shannon Busta, audience support by Christina Samueluski. The director of opinion shows is Annie Rose Strasser.