Life on the Front Lines of America’s Caregiving Crisis

There was a time when Jade thought, We can handle this. She first met John over the phone. It was 1990, and she worked for a California nursing agency, where she processed payroll. At the time, Jade was twenty-­six years old with a BA in accounting, having immigrated from the Philippines. She had come to the United States on her own, leaving her family behind.

John, a thirty-­nine-­year-­old white man who worked for the agency as a licensed vocational nurse, or LVN, had found a mistake in his pay and called to complain. Jade told him to bring his paper time slips to the office so they could go over them. He came in, she helped him, and that was that.

Then, a day or two after their meeting, he called the office again and asked her if she was married. He had noticed the ring on her finger. It was her mom’s wedding band; she wore it to feel close to her faraway family, a special reminder of them. She wasn’t interested in dating, so she lied. “Yes, I’m married and I have three children,” she told him.

To help his case, John activated what he called “the Filipino Connection,” referring to the high number of Filipina nurses in California, where more than 20 percent of nurses are Filipina. This statistic is explained in part by the global care chain phenomenon, a term used to describe the migration of people, predominantly women, from poorer countries to countries like the United States, where there is a care crisis. More and more women migrate to other countries to meet the ever-­increasing demands for paid care work in eldercare, childcare, disability care, and nursing that our lack of social safety nets creates.

She was motivated to approach their situation intellectually, professionally. But of course, caring for her husband was nothing like helping a patient she might see in the clinic.

Having learned from the other nurses that Jade had lied, John decided he’d just have to be persistent. He called every day, and he had a colleague put in a good word for him. Three months later, they went to dinner. “I was attracted to him and he was interesting to talk to,” Jade told me. Six months later they were engaged, and a year later they were married. They were a happy couple. John was an attentive and loving partner, a romantic who frequently bought Jade flowers and jewelry. “He really treated me like a princess,” Jade told me.

And they just got along. He was caring and helpful; she didn’t have immediate family nearby, and he taught her about American culture and was supportive of her as she later shifted into a nursing career. “We were good—we had a good sex life, good communication, he cared about the things that mattered to me. . . . We had a lot of maturity in the relationship.” There weren’t a lot of fights; if she was upset about something, she’d go quiet until she was calm and they could figure it out. When he was upset, John, who loved running and did it often, would go for a run and then return when he was ready to talk. They made a good home, a good life, and they had three beautiful daughters to show for it.

But then, John began coming home from runs with scraped-­up knees. He started to inexplicably fall, lose his balance, or trip. His handwriting was changing, becoming smaller and smaller. In 2000, he learned he had Parkinson’s disease, a movement disorder located in the nervous system that worsens over time. In its later stages, it causes a decline in cognitive function in addition to the physical losses. John was forty-­nine years old at the time of his diagnosis, Jade just thirty-­six, and the girls two, six, and eight.

By then, Jade had finished nursing school and was working as a registered nurse. So when John was first diagnosed, Jade’s immediate instinct was to learn everything about Parkinson’s and then use her training to battle it. She was motivated to approach their situation intellectually, professionally. But of course, caring for her husband was nothing like helping a patient she might see in the clinic. “This is no ordinary patient,” she told me.

In nursing school, she learned about common signs of a disease like Parkinson’s, like tremors or a shuffling gait. But she wasn’t given information in her training about the emotional and psychological effects on the patient and the family. John would have delusions, obsessive thinking, and overwhelming impulses to gamble or shop. No one had told her about this aspect of Parkinson’s, and she ended up learning about it from reading caregiver blogs or talking with other caregivers for people with Parkinson’s.

About seven years after John’s diagnosis, his father showed up one day on their front porch, with luggage. Until the day that he died in their house eight years later, Jade performed the bulk of her father-­in-­law’s care too. John helped some at first since his disease was in its earlier stages then, but like millions of other women in the United States, Jade was The One meeting the multigenerational care needs of aging parents, an ill spouse, and her young children, with very few social safety nets or immediate family nearby to support her. In fact, she routinely sent money back to the Philippines.

Jade’s can-­do attitude propelled her through the chaos of the coming years. But after her father-­in-­law died, John declined rapidly. Jade was left alone to take on all the household responsibilities: She had to work to pay the bills and take care of the children at home. She learned to survive on four hours of sleep, but she could never keep up. “You’re trying to go up to the surface of the water, and then something just pulls you down,” she told me on one of our phone calls. The first time we spoke, we did so over video; her computer’s camera was high up on the desk so I was peering down at her. It felt easier and more intimate to switch to phone calls after that, her voice calm and measured each time we spoke.

Career-­wise, she was held back from increasing her earning potential because of all the caregiving demands. She was unable to ascend the proverbial professional ladder because she needed to be home as much as possible. She couldn’t attend industry conferences or take advantage of other opportunities for professional advancement. Instead, she was picking up more and more nursing shifts just to pay for the family’s expenses, while doing the caregiving for John herself.

At home, she didn’t feel she could be there for the children as much as she wanted to, or as much as they thought she should. It felt impossible to keep up; something always seemed to be slipping through the cracks. And when it did, she was aware that it appeared to everyone to be her own failure. “Mom is an easy target for everything that goes wrong,” she tells me. Once, Jade was at a conference across the country. John, who was still ambulatory but experiencing some cognitive confusion, was at home. He wandered off and the police had to come find him.

For a while, she switched to telephonic nursing jobs so she could both work and provide John’s round-­the-­clock care at home, tending to him between calls. Her work was deeply important to her. She wanted to be good at nursing and advance within it, but instead, her job became something she just had to check off the list. Because of the caregiving, “I’m just meeting the minimum, just so I don’t lose the job.”

As more and more, and then everything, eventually fell to her, she looked around and asked, “Where did my life go?”

Eventually, she sold their house to pay for John’s care. She took a more stable job that required her to go in for her shifts. Since John couldn’t be left alone anymore, she used the money from the house and her better job to pay for his care out of pocket while she was at work or with the kids. The losses accumulated; the years passed. She began to expect chaos, to expect that her care work would never be finished. “You’d fix one thing, and it was like, oh my God, here is this other issue—­ his incontinence. What can I do so that the pee will not seep through the sheets for the next three hours? But all I have to do is change the pads . . . you figure out a way to do it. Then, a week later, something will change, and you have to figure out a way again. . . . Over the years, I have learned that there’s no permanent fix. You just fix it.”

As more and more, and then everything, eventually fell to her, she looked around and asked, “Where did my life go?” The material losses of her home and her career dreams, along with the depression, the loneliness, and the sheer burnout and grief of watching her husband deteriorate was killing her. By 2017, nearly two decades in, emotions began to push their way up; the can-­do attitude that had fueled her for so long was simply running out. She could no longer push through by ignoring her feelings.

She and the children, much more grown by then, went to family counseling. She found a support group and learned about the Well Spouse Association. She saw that they were having a national conference for spousal caregivers, a whole weekend of events that provided the opportunity for spousal caregivers to connect with one another and form friendships, and also to hear research and education on caregiving issues. When I asked her how she found the WSA, she said she discovered it online in the middle of the night.

I could just picture it; I had been there too. Lying in the dark, searching the screen while J slept in the other room—that’s exactly how I found WSA as well. Surely, I had thought, there was some answer out there to all my pain. Surely, it was

just a matter of me looking hard enough to find the thing that will ease it. You begin to think of the pain you carry as another problem you are supposed to solve, another task to take care of, because everything around you tells you that you’re supposed to be able to handle it. So you try to make the pain just go away; that way you can keep doing it all.

Jade attended that spousal caregiver conference. In a large conference room with maybe a hundred other people, the speaker asked the attendees to turn to the person on their right and say something they’ve always wanted to say but never felt they could. Jade turned and looked her neighbor right in the eye and said, “I am so angry.”

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Feeling angry, much less saying it out loud, was completely out of character for Jade. She never would have admitted it to anyone before, let alone herself. But that day, in the safe environment of the WSA conference, among other spousal caregivers who could understand what she was going through, it hit her all at once—­ the exhaustion, the grief, and yes, the anger of having become a serial caregiver.

She held all the possibilities at once, suspended in uncertainty.

When the session was over, she went back to her hotel room and cried. She could not stop crying. She tried, but her body simply wouldn’t stop. She spent the weekend sobbing, her body rolling with unbridled emotion. “I was really brought down to my knees,” she told me. The depth of her anguish astonished her.

When Jade and I first spoke in 2020, it had been twenty years since John’s diagnosis, but only a couple of years since that pivotal weekend of the WSA conference. By the time we talked, John was receiving hospice care at home. His condition fluctuated: some days he was bedridden and in clear decline, then he would have an upswing, and was eating better, gaining weight, and even ambulatory with assistance. So not only was she carrying the past—­decades of emotional fallout and exhaustion—­but she also couldn’t be sure which trajectory he was on in the present. Should she be bracing herself for his imminent death or would he be stable for a while?

She held all the possibilities at once, suspended in uncertainty. And she knew there was no emotional relief in sight, no matter which way things went. Between our conversations during this time, she sent me a photo of her and John. It was a close-­up of them sitting together on his hospital bed, their cheeks smashed together, both smiling. I was struck by their love, the purity of it, but also by all the ambivalent and conflicting feelings I knew she was having. I wanted to know more about that weekend, the turning point in her emotional landscape. “Tell me more,” I said.

“That was really the first time I realized I was angry. Because I’m a good—­ no, my image is this: I’m a nurse, I will take care. I’m a good wife, I can’t be angry, I have to be understanding.” A good wife.

I felt her words, her aspirations, her desire to be good in my bones. Because I too had been desperate for that nice, neat narrative, where my capacity to love and care for J remained bottomless. I had wanted not only to care for J, but to be happy doing it. I thought I could somehow acquire integrity through sacrificing myself. So I understood Jade’s impulse, her frame- work for understanding her position, and recognized myself in it: To bear it all is to be “good.”

“For spousal caregivers it’s like, ‘You signed up for this. These are part of your wedding vows. This is your duty.’”

In my conversations with Jade and so many others I spoke with, and from what I knew from my own caregiving with J, it was clear that there was a right thing, an expectation, threaded through all our experiences. With no real care infrastructure to help families, the care vacuum is filled with a slow and steady hum of powerful messages about who should take on this care instead (mostly women), and how you should feel about it.

The state doesn’t just abandon disabled and ill people by deeming them not worth committing public resources to. State abandonment is also achieved by the successful coercion of family members to take on the material care the state refuses to provide. Caregivers I spoke to had internalized this, acquiescing to the belief that it was their own individual duty.

Enter the idea of the self-­sufficient nuclear family, in particular the dream of monogamous coupledom and the fantasy of a spouse, usually a wife, who can be endlessly mined as a fount of free love and care. The message is this: If you are a good spouse, you should be able to endure. You should be able to fill this void because it is your duty. It’s right there in your vows: in sickness and in health.

So many people I interviewed believed their role was to do all the material labor of their spouse’s care. But it was also true that there happened to be no other option. “I’m just adhering to those vows. If I had a choice, I wouldn’t be doing this,” one person told me. Others said the vows meant they must stay and complete the job, do the work. Still others said things like, “I was raised that marriage is a commitment, it’s a lifetime thing.”

While any family caregiver faces the pressures of being The One in a society with few safety nets, spouses are particularly vulnerable because of our beliefs in the primacy of the romantic couple and the presence of legal vows. I found that this was borne out in caregiving research too. Compared to other types of family caregivers, such as adult children caring for their aging parents, research shows that spousal caregivers have far more intensive care demands that they carry out almost entirely alone. They do more medical and nursing-­level care—­almost three-quarters report doing so while a little over half of other care givers do—­and are more deeply involved in monitoring conditions and managing medical care. They do all this care-giving almost entirely alone, and while feeling that there is no other choice.

I spoke with the psychologist, consultant, and caregiving expert Dr. Barry Jacobs about the research I’d found and what I was hearing in my conversations with spousal caregivers. He told me that marriage vows are a key reason why spouses are expected to take on the primary caregiver role. Over his many years of seeing patients who were seeking therapy and support as caregivers, he has concluded, “For spousal caregivers it’s like, ‘You signed up for this. These are part of your wedding vows. This is your duty.’”

It’s as though we believe the extent of what someone is capable of as a caregiver is magically transformed by the mere existence of the words in sickness and in health. But it is an utter fantasy to believe that a spouse’s love alone gives them the capacity to carry the weight of an entire social system’s abandonment without dire consequences for everyone involved. But this fantasy is precisely what makes the cycle of abandonment complete, because as the state shrinks away, we as caregivers are told that if we don’t take it all on, we forfeit our ability to be “good.” And so, we try and we try and we try. And in that trying, we often abandon ourselves.

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From In Sickness and In Health: Love Stories From the Front Lines of America’s Caregiving Crisis by Laura Mauldin. Copyright © 2026 by Laura Mauldin. Excerpted by permission of Ecco, an imprint of HarperCollins Publishers.