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“In sickness and in health”: what no one tells you about caring for a loved one
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- [00:01]
A
Hey, it's Shemita. Just a heads up, I am having a baby, my second baby. And so I'm gonna be stepping away from the mic for a little bit. Pretty soon you're gonna hear some amazing guest hosts, starting with Sam Sanders, the award winning podcast and radio host. Until then, here is an episode that we recorded before I left. I hope you enjoy it. This is in conversation from Apple News. I'm Shemitah Basu. Today, when the vow in sickness and in health becomes a uniquely American burden. When Laura Mauldin was 27 years old, she was a sociology grad student in New York City. One night she went to a WNBA game with some friends and that's where she met Jay.
- [00:51]
B
It was sort of like a lightning strike, as they say, and that was kind of it. From that moment, we were never apart again.
- [01:00]
A
Just weeks into the glow of their new relationship, Jay told Laura that her leukemia, which had long been in remission, had returned.
- [01:08]
B
She told me that this is kind of the last chance I have to have this thing called a bone marrow transplant or this will kill me.
- [01:17]
A
Jay's parents were both dead and Laura, newly in love, quickly stepped up to help with Jay's career. The bone marrow transplant was followed by appointments and more treatments, doctor's visits and consultations that started overwhelming their lives. Laura didn't notice the shift at first, but over time she went from being Jay's romantic partner to being her full time caregiver.
- [01:41]
B
I think all of us think about or want to think about illness in this way. Oh, I just have to do X, Y, Z and on the other side of that, everything will be resolved and I can go back to my life. But there was no going back. And as it kind of drug on longer and longer, I realized, oh, this is my role. I became the one to do it all.
- [02:08]
A
It's been two decades since Jay died. Laura is now a professor of sociology at the University of Connecticut and and her time as Jay's caregiver inspired her new book, In Sickness and in Love Stories from the Front Lines of America's Caregiving Crisis. In it, she talks with dozens of couples about how illness and disability have strained their relationships and reshaped their lives, often because America's thin healthcare system leaves families without support and a warning that this episode does mention suicide. I sat down with Laura to hear some of these stories about, as she puts it, the the consequences of being the one.
- [02:54]
B
I think we have a fantasy of our romantic partner being the one and everything to us, such that when you are In a relationship, or at least I felt this way, that it was primarily my job to do everything. No one else is living with her 24 hours a day. No one else is the person who has to get her to the emergency room. There are just things, by virtue of being a partner and living with someone that you're intimately connected with that other people aren't. And so I think being the one is something that happens in a really invisible way because it's subtle and it's intimate. And we don't necessarily question the role of someone's partner or spouse. There are consequences to that that are both good and bad, because when you're very good at it, you also ensure that that person is getting the best care. You're the one that knows exactly how they like to have this particular tea made or this particular dish. You know, exactly how they like their pillows. You know, there's this exquisite kind of care that can happen when you're that knowledgeable about someone. That's wonderful.
- [04:13]
A
Yeah. But can also make you reluctant to want to delegate those tasks to someone else, for sure.
- [04:20]
B
And it can make your partner reluctant to let you delegate those tasks as well.
- [04:26]
A
Right, right. Well, tell me more about what you wanted to do with this book and your decision to include your own story. Because it sounds like you have this personal experience, but then you also have an academic experience of thinking through these topics on a social level and on a political level.
- [04:46]
B
Yeah, I mean, the book is 20 years in the making, honestly. You know, I'm a disability studies scholar, so I think very, very much about the political and social aspects of disability. And I thought to myself, oh, I'll write a book and I'll publish it. Just like another academic book. It'll be some kind of study. I'll go and design my interviews, and I'll get my data, and then I'll write about the data. And I started a couple of interviews, and I think after the second one, I realized that this is not an academic book and that I had had a very particular experience, an intimate experience, but that in talking to people, the more I realized, so is everyone else. And this is about the inevitability of the fallibility of our bodies. So that's how the book came to be a focus on can I tell my singular and specific story? And a few other singular and specific stories in order to sort of weave together this broader picture understanding of this universally human experience.
- [06:04]
A
One of the couples that Laura introduces us to is Tina and Ben. Tina was declared legally blind when she was 6 years old. Then, at the age of 21, she was diagnosed with multiple sclerosis, or MS, a chronic, often disabling autoimmune disease that can cause a variety of symptoms, including muscle weakness, and can make it difficult to walk and move. It was a devastating diagnosis for Tina, but at first it was manageable.
- [06:30]
B
Ms. Often begins in a way that is called relapsing, remitting ms, so it may flare up and then it will recede and go away. So she wasn't always displaying symptoms.
- [06:44]
A
Tina went to college, which is where she met Ben, a fellow student who worked as an assistant in a computer lab, and he became her tutor. But even as they began to fall in love, Tina was afraid to tell him about her Ms. When she finally did, she was relieved by his reaction.
- [07:02]
B
He described the early years as being, you know, he's intrepid. He was like, oh, well, this is just something we will deal with. No big deal.
- [07:11]
A
As time went on, after they moved in together and got married, Tina's disease progressed. And Ben took on more and more caretaking responsibilities, helping Tina use the bathroom, managing medications, even administering home treatments with an iv. And he slowly realized how alone they were in this experience.
- [07:31]
B
And many, many years later, decades later, he says to me, I now realize I'm going to be doing this into my 90s, and it's never going to stop, and there will never be infrastructure to do all that needs to be done.
- [07:47]
A
Tina's symptoms got worse and Ben started missing more and more work. Soon it was clear that she needed around the clock care that his health insurance didn't cover. They looked into Medicaid, the government insurance program for people with low incomes. But in Massachusetts, where they lived, a family of two had to make less than $13,000 a year to qualify. Because Ben was working, they weren't eligible. Their only option was to pay out of pocket for Tina's care, which they couldn't afford full time without going deeply into debt.
- [08:19]
B
So if you don't qualify for Medicaid, then your day to day life is totally dependent upon the other person in particular here, the spouse. And so Ben was really struggling to, well, how do I go to work if tina needs help 24 hours a day? So how do you go to work when, if you leave that person, they can't move.
- [08:45]
A
Right.
- [08:46]
B
But you can't not go to work because if you don't go to work, you don't have health insurance.
- [08:51]
A
Health insurance, yeah, exactly. Right, right.
- [08:54]
B
Which is another sort of piece to this. And I think one of the Things I tried to do in this book was show how ableism shapes every single decision we have made around care policy in this country, and that includes health insurance, because we've determined that only bodies that work that are productive for the economy should have access to health care.
- [09:20]
A
You outline this in so many different stories in the book, but so many people are left in this position of, I need to go to work. I also cannot leave my spouse at home by themselves. You describe one scene with Ben and Tina where Ben had to leave Tina alone all day and and basically try his best to surround her with things that she might need within easy reach. But one day it became really clear that that was just not a tenable option for them. Can you tell us a little bit about what happened?
- [09:57]
B
Sure. It was a winter day, and Ben had gone to work. And at this time, they were very practiced. This was their routine that they set her up on the couch, put a blanket on her, had a big jug of water, the telephone, and food, you know, right next to her. And at this time, she was still transferring herself from the couch to her wheelchair and going to the bathroom and then coming back. What happened this one day was she needed to go to the bathroom, and so she tried to scoot over and transfer herself into the wheelchair, and something got caught. And so she missed and ended up face down on the floor, sort of pitched forward and stuck. And it was around lunchtime, and at this time she was hungry and she had to go to the bathroom. And so she ended up urinating on herself while totally stuck in this position and unable to move. And she kept trying and trying, but, you know, because of the ms, she was unable to get herself up. And she's also, again, blind. And all she's really aware of is the carpet and that hours go by because it begins to get dark. And her cats began to eat her lunch, which was a tuna fish sandwich. This was a moment in the book where I was extremely struck by the way that she understood that scene was not why have I been abandoned? And I'm not saying abandoned by Ben. I mean by a system that has refused to provide care so that this human being can live a dignified life. Her thoughts did not go there. She wasn't angry. She wasn't cursing the situation. Instead, she blamed herself for being disabled and decided that she was ruining Ben's life. That look at what I'm doing to him. And that really drove home for me how powerful and pervasive that ableism that she had internalized had not let her be angry or demand more or understand her experience as a political experience. Instead, she only saw it as her
- [13:00]
A
own failing and felt shame around it. Yeah. I want to make sure that we briefly talk about this other couple that you introduce us to in the book on Helen, Kim. And they're very different from Tina and Ben in that it isn't a slow, slow, over the years kind of progression and evolving of a condition. But angel had a stroke at the age of 59 very suddenly and found himself a disabled veteran. But because he was not disabled during his service, he wasn't eligible for VA care. Can you talk a little bit about what their lives looked like when this happened and kind of the sudden realizations they felt like they had to make as a couple?
- [13:51]
B
Yes. At the time that this happened, angel was working full time, five days a week, every day, going in and working as a contractor at a retirement community near his home. And as is standard in that industry, he was considered an independent contractor, someone who was self employed. Right. So he wasn't. He didn't have any benefits. And then on the other side of this was Kim, who at the time was recovering basically from being a full time caregiver for her father. When angel has a stroke, he's basically paralyzed on one side, can't see out of that eye as well, and can no longer work as a contractor. And this is not good, because how are they going to pay their rent if he can't work? And this was a few Years ago, around 2018, I believe, and they went to the Social Security office to get Social Security so that they could pay the rent. But in fact, the amount that you get from Social Security is highly variable because it's based on the number of years you worked. It's this formula around work credits. And so although he had been working for many years, he, like most other Social Security recipients, receives somewhere in the realm of like $1,500 a month, which doesn't provide a livable amount of money or what we might call a living wage, even though we often think that, yes, you're disabled and then you just go down there and you just get all these benefits.
- [15:34]
A
While angel and Kim were struggling to make ends meet, they were also going through a major transition at home, adjusting to a life where angel was now in a wheelchair and unable to use one of his arms. After the stroke, angel spent six weeks in rehab. But Kim felt that once they were sent home, they were on their own.
- [15:53]
B
When he was in the rehab, nobody talked to her, really. Nobody shared what she might Want to expect nothing. And then she goes to pick him up and bring him home. And the only thing they hand them as they're going out the door is a pamphlet for suicide prevention. It's this idea that you would probably prefer to be dead than be disabled.
- [16:21]
A
The first few weeks of Angel's return home were hard. Someone from the rehab facility had come to install a shower chair, but they'd set it up backwards, and angel fell while Kim tried to get him in for the first time. Slowly, they learned to adjust, but spirits were low. And that suicide pamphlet, angel understood why it was given to him.
- [16:41]
B
He had very clear notions about, well, I am the man of the house. It is my responsibility to work and bear the financial burdens. And when he could no longer do that, there was a long, long period of feeling like he shouldn't even be alive.
- [17:01]
A
But in time, angel and Kim settled into a new normal. And although angel still told Laura that he has feelings of worthlessness, during a recent visit, she saw him puttering around the house with his tools, making small repairs and improvements.
- [17:17]
B
This is a person who is so funny and so clever around kind of, you know, Jerry rigging everything and figuring out he's kind of a MacGyver. And I watched him do these things around his house, and I kept kind of being like, oh, my gosh, look at this. This is fantastic. And he, you know, I don't think saw those things as valuable as I thought they were.
- [17:44]
A
Coming up with solutions around the house. Yeah.
- [17:46]
B
Figuring out, well, how do you do things differently if the world isn't designed for you, how am I gonna figure this out? You know, very clever. And lots of people have talked about, in my world, that disability is the source of creativity because there's a friction between you and the world. And so it requires some ingenuity and creativity to get around it. And that we. We all benefit from these kinds of creative ways of doing things. He also has such a fantastic partner in Kim that over time, they've, you know, come to something new between the two of them. So it is a long journey, but it does change. It's not always the depths of despair like it is at the beginning when you have to adjust. And I think that's really important for disabled people to hear. You know, people who have acquired a disability or have a chronic illness or a progressive disease. I think it's really important to hear that.
- [18:49]
A
Yeah. Yeah, of course. I do want to come back to your story with Jay, and you've written about now how devastating the end of Jay's life was, how traumatic it really was for both of you. You weren't able to be with Jay when she passed away. And you write very candidly about how you struggled with thinking about that time in your lives and what you shared as you reflect on that. And it sounds like having spoken to all these couples also as a way of reflecting on that experience, too. What kinds of changes do you want to see to make sure that this experience is different for couples, for people experiencing disability, for caretakers?
- [19:42]
B
Yeah. I think one of the most important things to me is taking what is so private, it's so hidden behind millions of doors in this country that people need care. That the story of Kim and Angel, the story of Ben and Tina, this is not unusual. And yet again, we don't talk about it, which perpetuates that same shame that Tina or Angel were exemplifying. And it perpetuates the isolation of caregivers who are thinking, well, this is just how it is. This is just my job as a partner or a spouse or a adult child of an aging parent, or it doesn't matter what type of caregiver because it's so private and so riddled with shame in a lot of ways. And our expectations of what love can do are basically, well, the state doesn't need to do anything because love should be able to do it all. And this, I think for me, it was about writing my failure, my love's failure to stand in for an absence system that my love was not infrastructure, in fact, and it could not fuel all of the material care that needed doing. And I want people to know. I want people to know that. That it isn't an individual responsibility or an individual failing or an individual failing. Right. That being the one is a no win situation. And that disabled people deserve more than having everything about their care and all the possibilities of a good life consolidated onto one person. That is not fair. It's not fair to the disabled person, and it's not fair to the person who's the one. And it's my hope that by being very frank about my own failings and what I hope comes through in the book is an attempt to forgive myself. Twenty years later, I'm still trying to forgive myself. So I would very much like for other people to read this and go ahead and forgive themselves right now and then do something.
- [22:19]
A
Forgive yourself for what?
- [22:21]
B
For being unable to do it all or to.
- [22:24]
A
For thinking you should do it all?
- [22:26]
B
Yeah, I think we shouldn't view this as an individual responsibility. We should view this as a collective responsibility. And I'm not a policymaker, but you do have policymakers who sort of have very clear ideas around, well, we should have universal healthcare, we should have Medicaid, should be universal. We should have universal long term care that people, people can activate when needed. You know, these kinds of things. And then you've got other people are like, that's never going to happen. We need to figure out these other ways to do things like expanding our friendships, being more honest with each other about our care needs, and expanding the circle, moving beyond the primacy of one partner doing everything that instead your neighbor, you know, your, your friends from church, your whomever it may be, can also take part in this. It doesn't have to be shameful for me. I want people to take a way that they can forgive themselves and ask for more.
- [23:25]
A
Laura, thank you so much for sharing your story and for sharing these stories and to everyone who participated in the book.
- [23:32]
B
Thank you for having me.
- [23:36]
A
We'll include a link to Laura Malden's book In Sickness and in Health on our Show Notes page. And every weekend you can find new episodes of Apple News in conversation in the Apple News app. Just tap on the audio tab, that's the little headphones at the bottom to find it.