The elderly population is on the rise, bringing the United States’ caregiving crisis into sharp focus. On this episode of “The Opinions,” the producer Vishakha Darbha talks with the Times Opinion politics writer Michelle Cottle about the overwhelming audience response to her recent essay about caring for her ailing father, the political challenges of long-term care and the burdens faced by caregivers.
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The transcript has been lightly edited for length and clarity.
Vishakha Darbha: I’m Vishakha Darbha and I’m an audio producer on this show. Today I’m in conversation with The New York Times Opinion writer Michelle Cottle.
Michelle usually covers politics. But in the past few years, she’s also written several stories 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 U.S. caregiving system. More than 2,000 people responded to her essay to share their own stories.
Marion Evans: I took care of my husband for 15 months at home after he had spent 179 days in the hospital.
Kathryn Solowiej Brooks: I took care of my father who had congestive heart failure, Stage 3 kidney disease, and later was diagnosed with brain cancer.
Jan Whittaker: My mom, currently 99, arrived legally blind, hard of hearing and with congestive heart failure.
Darbha: Now, Michelle and I have something in common. I also lost my father last year after a long battle with dementia. So, I wanted to speak with Michelle about what she learned in her reporting and about the growing caregiving crisis in the U.S.
Michelle, could you walk me through your father’s story and how it all unfolded?
Cottle: My dad had always been very independent, very sharp. He was 78. He had been taking care of himself, but also helping my mom, who has had every medical issue under the sun, it feels like.
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, there started to be issues with cognition, and whenever you’re in these kinds of treatments, you wind up with infections, you get unbalanced, you’re prone to falls.
So, he was having all these usual issues that can be a problem, especially for older patients. 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. 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 are trying to help a patient be as comfortable as possible, basically while they’re dying. So this was the trajectory, but 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.
Darbha: 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 — this is a year before he was diagnosed. We were watching “Zootopia.” Great movie.
Cottle: Fantastic.
Darbha: 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. That’s when I knew something was shifting and probably forever. Was there a certain moment like that for you?
Cottle: Originally, we weren’t that concerned about the cognitive slippage because we had been warned that the kind of chemo he was on could produce these kinds of glitches, and we had actually been told to be on the lookout for them.
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 E.R. waiting to be treated one night and became 100 percent convinced that he was waiting in line to re-enlist 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 brothers struggle with it for over a decade. At that point, the doctors had said that he was no longer a good candidate for major surgery and 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. My sister and I were left deciding to sit down and break it to our father that his absolute worst fear had come true — which, I have to say, I do not recommend. Not a great conversation.
But that’s when we just knew it was different and we were in a different world.
Darbha: I want to talk about that shift. When we asked readers about their feelings, they cited everything from exhaustion and isolation, to needing to stay strong and resilient and brave.
Marion Evans: It was the hardest thing emotionally and physically I have ever done in my entire life.
Raewyn Girard: Some days I cry. Other days I swear a lot.
Kathryn Solowiej Brooks: What struck me is that other people my age in their early thirties couldn’t relate.
Marion Evans: We all have the capacity to be brave. We just have to dig deep down inside ourselves to find it.
Darbha: And so how did it make you feel when you realized the gravity of caretaking, especially for your father who was in the final months of his life?
Cottle: This came in stages. We started out thinking: Oh, my God, we have to help our parents navigate the basic health care system of a complicated disease.
We started out thinking: OK, we’re going to get Dad well. And then it gradually got more and more serious. But at every stage, part of it was just — not panic, but just this sense of disbelief at how confusing and chaotic it could be.
We started this text chain — my sister, my brother-in-law and I — to swap daily updates. We would have these sometimes really dark humor exchanges starting out, like: “He’s gone rogue. He’s driving into a bad part of Houston. He has gotten lost. He’s ignoring phone calls.” And then later it’s like, “Oh, my God, he called and 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.
I’ve found this with a lot of people. I’m at the age where almost all of my friends are dealing with something similar. Sometimes, we’ll just get on the phone and just go through the recital of the crazy of what’s happening. It’s an emotional release of sorts. It’s a safety valve — and I think everybody needs that. When I’ve talked to caregiving experts and professionals, they agree that this is the thing that most people underestimate the need for. You should not try to grind this out alone.
Darbha: As you talked about sharing that humor, I remember my mom and I would try to find joy in little moments.
There was this time when 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.” He refused to take them off. He was just like, “No, these are 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.” It’s always nice to have someone to share that with.
A lot of caregiving does happen in isolation and people don’t really want to think about it or talk about it unless they’re actually facing it themselves. That can make it really lonely. It feels like there’s a real hunger to connect about these topics. I think we saw that in your piece. Your essay had more than 2,000 people respond and write in to talk about their own experiences of caregiving.
Could you walk us through some of the big themes that emerged in these responses?
Cottle: Absolutely. 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 ——
Raewyn Girard: 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.
Cottle: Or finances ——
Kathryn Solowiej Brooks: I quit my job. I just couldn’t take care of him and my twin toddlers and work all at the same time.
Cottle: Or in some cases just the emotional toll this takes, watching a loved one age or decline.
Jan Whittaker: 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.
Steve Whittaker: I’m on crutches from a painful revision to knee replacement. Most of the caregiver burden is on my fraying wife who has severe arthritis. We are both experiencing significant depression.
Cottle: So, lots of stories along those lines. Then, on the flip side, I was 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.
Darbha: Yeah, 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. What were people’s biggest struggles?
Cottle: 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 — is usually handled by Medicaid, if you’re 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 impoverish yourself in certain cases in order to qualify — which seems completely backward for people who’ve been saving their whole lives to deal with their retirement.
Also, Medicaid does not guarantee you in-home health care. You can only get that if the need 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 and 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, 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 just not a great system, even for people who are financially solid.
Darbha: Do we have anything in place societally in an economic sense to handle this crisis? And how far away are we from that goal?
Cottle: 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, and this sounds really stupid, is there’s no villain. Often in politics, it’s easy to gin up attention for it if you’ve got a bad guy on the other side of this. There’s not one.
And also people in families feel very ambivalent about: Well, I should be handling this myself. They’re my parents. It’s my obligation. So, they don’t even think in terms of a social safety net for this. And most people don’t want to think about it at all until they’re in the middle of it. Then they’re so panicked they don’t have time to do anything except deal with the emergency situation.
There are a couple of ways that people in Congress 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, was a thing like how 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. So, it became financially not that sustainable for the insurance companies and it kind of petered out. 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. Donald Trump, a week before the 2024 election, vowed that he was finally going to get these passed, that he was going to take care of neglected family caregivers — which, no, it’s not happened. You can comb through the processes of the One Big Beautiful Bill, but this was not a priority, and it didn’t get in there. So, promise denied.
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 was like: “Why are these strange people here? And what are they doing and why are they bothering me?”
There’s a lot of physical risk that goes with this job. The compensation’s not great, the possibilities for advancement aren’t great. 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 — they represent a bigger percentage of caregivers than they are in the population — are immigrants.
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 they are no longer available. So, instead of getting better, that piece of this is in line to get worse.
Darbha: Given this current political scenario that we’re in right now, do you see the future of elder care changing, getting worse, or staying the same in this political system with financial strain, physical burdens, and no respite from the state? Is this how it’s going to go?
Cottle: The demographics alone are a little bit terrifying. I think it’s something like every day more than 10,000 people turn 65. The baby boomers are getting older, and the number of kids people are having in the U.S. is shrinking, and people are living longer.
It’s combined to create this perfect storm and I don’t see anybody working to seriously address a situation that is expected to get worse for the foreseeable future — for another couple of decades before it could even have a chance, demographically. The math is just overwhelming as the baby boomer generation gets older.
Darbha: Right. 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. 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? Some people said they were feeling depressed. Some even mentioned medically assisted suicide, while others talked about getting really intense about saving their money.
Michelle, I’m curious how you’re thinking about your own future.
Cottle: 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 different models for where you live as you age. I have been to the Villages in Florida. I have been to Portland to look into these communities that have popped up, mostly populated by older residents.
I have been to look at low-income communities where you have seniors on site, but also younger families who need help. Everybody works together — the 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: OK, 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. When I visit these places, the people who are the happiest seem to be those who have thrown themselves into this next phase of life.
For other people, everybody has their own preferences, but I think my biggest advice is: Don’t ignore this until it becomes a problem. I 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, like trying to correct them or make them remember hard facts.
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 until you’re dealing with it? If you talk to people who deal with this on a regular basis, they can save you and your loved ones a lot of angst and suffering. So, don’t grind this out by yourself. That’s my No. 1 piece of advice.
And 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.
Darbha: On that note, thank you so much for speaking with me about a topic that’s usually very hard to talk about.
Cottle: Thank you so much. As you know, I am obsessive about talking about this, so I really appreciate it.
Darbha: And I also want to say a big thank you to everyone who reached out to us with their own stories of caregiving. Thank you so much.
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This episode of “The Opinions” was produced by Vishakha Darbha. It was edited by Alison Bruzek and Kaari Pitkin. Mixing by Daniel Ramirez. Original music by Isaac Jones and Sonia Herrero. Fact-checking by Mary Marge Locker. Audience strategy by Shannon Busta and Kristina Samulewski. The deputy director of Opinion Shows is Alison Bruzek. The director of Opinion Shows is Annie-Rose Strasser.
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