It’s an old adage: when people get married, they promise to stick together “in sickness and in health.” But that’s easier said than done when you’re caregiving for a spouse or long-term partner, when systemic failures often lead to burnout.
In her new book, In Sickness and in Health: Love Stories from the Front Lines of America’s Caregiving Crisis, University of Connecticut professor Laura Mauldin explores the relationships between caregivers and their disabled and sick spouses, and the underlying lack of structural support in the US that makes unpaid care an inescapable feature of most such relationships.
The topic is personal for her: Maudlin’s partner leukemia came out of remission as they were getting closer in 2006. “Falling in love with J had called upon me to increasingly fill a role that required meeting nearly every one of her needs,” Mauldin writes in her introduction. “This was more than just providing emotional support when the person you love is suffering.” J passed away in 2010.
I spoke to Mauldin about crafting this book based on her lived experiences, how systems fail both disabled people and their caregivers, and what is at stake with Medicaid cuts exacerbating the damage to an already broken system.
This interview has been edited for length and clarity.
What led you to write a book about spousal caregiving?
“What’s really important is for disabled people to understand that their situation is political, and for caregivers to understand that their situation is political.”
I had this experience of being a caregiver for my partner, and while I was doing that, I was also being trained as a sociologist. I was in graduate school, and I was focused on the social and political aspects of illness and disability from an academic perspective. I had this deeply emotional, traumatizing, transformative experience as a human, and then at the same time, I was being trained to think about and understand the world in particular ways, through theories of disability, through disability studies, with an emphasis on the politics of disability.
I processed the experience and tried to make sense of what happened to me, but also understanding that it was nothing unusual—that this is happening to millions of people all over the country all the time, and that I could both speak about this from personal experience and as someone who had been academically trained to think about the world in particular ways.
I started out this project as a kind of standard academic project. I began the research process and thought, Okay, I’m going to gather data. As soon as I started talking to people, I realized that I could not treat this as some kind of disconnected or depersonalized idea of data, and that I had to go ahead and bring the full force of my emotional experience into this matter, and write about that alongside other people’s stories. So it became a book of stories.
My main goal is to help people feel less alone. This is not a fringe experience. The second goal with the book was to write something that was emotionally accessible, so that people could gain a new understanding of the ways that their experience is shaped by social and political decisions.
How did you cope with being a caregiver of someone who lived with and eventually died from cancer?
I think I coped with it by writing this book. I have a long history with C-PTSD. For me, writing is the only way I can ground myself in the world. I had piles and piles of journals, so a lot of the material in the book actually wasn’t just from memory, particularly at the end of the book, where I have this love letter to everyone.
It’s really a love letter to them as well as myself—that if I can use this book as an act of care for other people, I am, by nature, sort of reciprocating that to myself: that we can tell each other that you’re okay, you aren’t worthless, you’ve done your best, you can forgive yourself—all these kinds of things, in a society that tells us that disabled people are worthless and caregivers are devalued. I don’t know that I actually coped well in the years that I was a caregiver. I think I coped by intellectualizing because I was in graduate school.
Disabled people are often taught to feel like burdens by society. How can we talk about caregiver burnout in a way that doesn’t add to that?
During those years, it was deeply difficult; it was traumatic. And that is every caregiver’s experience, because there is no system, and we have to stand in for an absent system. The result of that is profoundly negative mental health effects on caregivers. There is no alternative narrative available to caregivers, that if this person just didn’t have this disability, my life would be okay. Or it’s this person’s terrible illness.
“One of the key ideas in the book is that the state uses marriage to abandon disabled people…we have this myth-making around what love can do.”
Disabled people often feel, “Oh, well, I’m the person with the illness or the disability, therefore I’m the problem, right?” That narrative is very common. What I’m trying to do with this book is show how these social and political and cultural sort of systems and beliefs and practices essentially are a system of ableism, where we don’t invest in or value disabled people, so we don’t invest.
When we don’t invest in their care, we’re actually also not investing in caregivers’ lives either, because they’re the ones who have to pick up the slack. So many people I spoke to would be in a nursing home if their partner didn’t stay and take on this role. Once, when my partner was being discharged from the hospital, the nurse said, “Are you sure you want her to come home? Because this is nursing home–level care.” What am I supposed to say to that, you know? And of course, I say yes, she needs to come home, realizing that if I didn’t say yes, as for many people across the country, there’s nowhere else for them to go.
What’s really important is for disabled people to understand that their situation is political, and for caregivers to understand that their situation is political, and that the same system of ableism that’s entrenched in every care policy we have is entrapping both people. But people tend to see illness or disability as this tragic, rare thing that’s not supposed to happen. It’s just what it is to be alive, and we’re going to have care needs, so we need a system for that. We need infrastructure for that, but we don’t have it. So again, without understanding both of those positions as inherently political, people don’t have an alternate narrative other than “That person got this horrible, terrible disease, or has this disability, and that’s just so burdensome,” and then the person internalizes that.
One story that stood out to me was Tina’s. She and her now-spouse Ben got together when she was living with symptomatic multiple sclerosis, but they now seem to exist in a marriage where Ben seems incredibly burned out. What does that tell us?
I don’t think that [Ben] understood that this was lifelong and would kind of transform into a progressive, degenerative form of MS, rather than an episodic, relapsing remitting. One of his key quotes to me was, “People assume that there are programs and resources and there aren’t.” He didn’t understand what the sort of trajectory was going to be.
“There’s no shortage of people who love their partner and want to take care of them, but in the absence of supports…they literally can’t do it.”
Decades of literally not being able to leave his house because Tina was unable to be safely left alone—yet he had to work, because if he didn’t work, then they didn’t have money to pay rent, money [for] food, health insurance.
Because we attach health insurance to employment, he had no choice but to go to work and often leave her at home in a very perilous, dangerous, dehumanizing situation and over a number of decades of just being trapped in debt, having to eventually file for bankruptcy, not being able to find accessible housing, just one thing after another, after another. It tells you how many gaps there are, from housing, to wages, to the lack of programs to support the care needs of people living at home.
A lot of people think that there are long-term care [programs] like that. The only place you can get that is Medicaid, and Medicaid is a poverty program, but Ben had a job, so they were disqualified.
The reason why Ben’s income counted against Tina is that they were married: One of the key ideas in the book is that the state uses marriage as a tool to abandon disabled people. It is a tool where we have this myth-making around what love can do, and that marriage is about “in sickness and in health,” which absolves the state—this vow that makes you the responsible party.
What was it like finishing the book last year, as Republicans voted to gut Medicaid, which means that existing infrastructure, like home-and community-based services, could be even weaker?
It was mind-boggling, horrifying, demoralizing, rage-inducing, because so many people I talked to, even if they had Medicaid, had a hard time using Medicaid services because Medicaid had been cut so much. The wages are terrible, and people, including Ben and Tina, couldn’t find people to do the home health aide work that they needed.
We’re already at a crisis point, and now we’re just going to make it worse, so that more disabled people are going to be forced into institutions. There’s no shortage of people who love their partner and want to take care of them, but in the absence of supports and systems and infrastructure like the life-saving infrastructure of Medicaid, they literally can’t do it. They lose wages, which means they lose retirement, they lose Social Security, they lose all these things that you’re paying into when you are employed. But if we understand that we’re not alone, then new opportunities for conversations, for alliances, for support, for networks and community, all those things start to become possible.
This post has been syndicated from Mother Jones, where it was published under this address.