Nobody cares
May Include: Caretaking blues, "Sorry! It’s a liability issue," Thoughts on patient choice, Feeling vs. fact in medicine
I want to give a warm welcome to the subscribers who found me through my essay in Strange Pilgrims. It was indeed a strange experience, by which I mean it was both really cool and kind of disembodying, to be in so many inboxes. Shannan and Karan were great to work with, and I can’t overstate how nice it was to be paid $200 for an essay. I respect their financial acumen as much as their taste—rarely any lit mag can offer that much for an essay anymore, which is a sad yet existential reality for writers.
High highs and low lows. That’s the life of an essay if you’re lucky enough to see it all the way to print. Expectation climbs until the moment of publication, where it begins a precipitous drop. I must admit that, with the social media aspect of Substack, I had to work on managing my expectations more than usual. Excitement quickly turned to disappointment, then doubt, then guilt about being ungrateful, before returning to excitement. (Why was I getting less engagement than other pieces? My inner saboteur wondered. Was it the length? The purple prose? Is my essay a flop?)
I would also like to extend my deepest gratitude to Jenny for becoming a paid subscriber. Sometimes it’s nice to get something you don’t deserve—and I definitely do not deserve any paid subscribers right now!! (When was my last update, December?) Jenny’s gift has been a call to action, which means back to the page, back to the idea of this newsletter, which I remain both excited about and committed to, but have been lacking in follow-through.
The purple-prosed flop in question:
Part of the reason I have been absent is that I’ve become my dad’s primary caregiver. "Become,” of course, isn’t the right term. As my boyfriend is wont to say, Growth begins with a mindset shift. What do you call a role that others expect you to meet, that you also expect yourself to meet, and that you feel obligated to meet, but that nobody is, strictly speaking, making you meet? Is choice enough? Maybe. But I don’t feel like this role is something I’ve chosen. It feels, instead, like a small thing that’s been left at my doorstep, whining. On good days, this amorphous thing is like a snake plant a friend couldn’t fit in their moving van—innocuous but alive, there—while on bad days, it’s an infant in a basket, something unencumbered by selfhood and thus capable of an all-encompassing pull, something rawly and fully needing.
Many people who need long-term care (I’m thinking illness or disability in a lot of forms) live at home, and many of those people live alone. They’re people like my dad, whose care is mostly informal, who might not want care in the way that it’s offered or who can’t afford the kind of care that they want, who don’t believe that that care is out there, or who just want to be left alone. These are people who have been denied disability or don’t want to go through the arduous qualification process. Maybe they’re jaded or paranoid, having heard others suggest institutionalization and wanting to stay in their home at all costs. The Family Caregiver Alliance (FCA), for instance, has found that nearly 80% of adults who live at home and receive long-term care get it solely from relatives and friends.
Every time I come home, I do the same things: I fix my dad’s phone, I get the TV working again, I clean and clean and try to keep my lectures to a minimum. It’s not fun, but there’s a regularity to it, a ritual. Every time, I feel like I should have come sooner. Feel again being the operative word—for when it comes to managing chronic conditions, once a diagnosis has been declared and medicine has been doled out, feel is operational. The doctor is a plan, a threat, an idea.
My dad is a disabled vet—I swear to God, his insurance covers nearly everything—and even his care is a dance with state agencies who only answer the phone the third time you try them, who only have appointments in six months. I have called friends who still live at home to deliver my dad water, to help him off the floor. The alternate option is the welfare check, and I’m talking about the act, if you’re not familiar. Where I live, that means a call to the local police station, with an officer firing off a barrage of grilling and accusatory questions on the other end before driving to my dad’s house and going in through the back. I’ve done that more than once, and I’m only a little ashamed to admit it. You do what you must to feel better.
The work of caretaking is mentally taxing, it just is. Cleaning up feces, trimming nails, knowing exactly how the next mess is going to form, the mess that is now your mess, and that there’s no way to stop it. It’s also unspokenly indulgent—if you, like me, have the bug. Even if you don’t, there’s almost no way around the kind of holy sacrifice that is caretaking, not to mention—CRINGE!—telling someone about it. Like admitting an illness or death in the family, it inspires a somber tone in others—sometimes rote and sometimes earnest, the way all human response goes, I guess. Case in point. My coworker recently lost her grandfather, and people are flooding her office. It’s nice, she says, but she just wants to work. She half-means it.
I am absorbed into the daily war of wills that, until recently, I’d just heard about. I, the caregiver, want this; my dad, the sick person, wants that. Both the caregiver and the sick person point to evidence when they argue their cases, because they argue. We argue. But the evidence is mostly feeling. Outside of the doctor’s office, everyone is feeling and led by feelings. You seem off today means I feel like you seem off, at least more than usual. I take your vitals, and they’re in range, but you still feel off, so. Will I convince you to go to the hospital?
Even our supposed evidence for imposing our wills shrinks under inspection. For inside the mind is a different story: a whole ecosystem of feeling grows and shrinks and hides, only peripherally supported by cold, hard facts. This is one of the more unspoken difficulties of providing care: a general lack of, not certainty per se, but definition. The ability to say this is this gives you confidence, if not license, to act not just on your behalf, but on behalf of you and another, especially a parent, someone you’re not used to calling the shots for. As one writer puts it in a personal essay for The Guardian about his aging mom: I was the villain who had curbed her independence and lorded power over her. “You are not my boss,” she told me in anger dozens of times.
I tell my dad “No” when he’s not used to hearing it, and I’m not used to saying it to him. I tell him “No” but give him the option to argue back, even though he is often unable to do what he wishes on his own without my assistance. I tell him “No,” and still sometimes I cave, both out of exasperation and love, love not for him as much as his ability to exert agency like he used to, like it’s something inalienable, almost constitutional. Even so, when I look at him, I don’t see myself. Sometimes, I go so far as to try to deny the self, to let myself be an empty vessel, nothing but a reflection in my eyes of the past him, that it might trigger his body to recall that man and bring him back.
I am always on the phone with people I don’t know. Strangers come in and out of my dad’s and my life like migratory birds, briefly offering care, time, advice. Who aren’t these strangers? Home health aides, nurses, social workers, elderly health solution for-profits and nonprofits, local paramedics, sales directors of assisted-living facilities, bureaucrats from the VA. I talk and text with these unknowns, mostly women, who call me from numbers I rarely save, asking me questions that in any other circumstances would be, I’m not gonna lie, so inappropriate. I’m not even sure how they all get my number. Strangely, it is with these disembodied voices that I find myself getting the most support. I pour my heart out, talking on the phone for sometimes an hour or more, sharing stories with an intimacy that I reserve for my closest friends. On the way to appointments, or to the grocery store, or home, they lecture, give me life advice, and vent to me about similar experiences with elderly or sick parents, about their frustrations with our healthcare system, about how frustrating my dad is, about everything that they wish they could do anyway, that our country could do, for people like my dad, which means either veterans or disabled people or alcoholics or just people in need of care they aren’t getting, depending on who I’m talking to.
And then they go, passing the mantle to someone else, usually me, having determined that my dad doesn’t meet the standards of their program. Often, this is because of his addiction. (Most home health programs will not work on patients who use drugs or alcohol, as it is a very reasonable liability to their employees.) That, or my dad sends them away, which is something he can do until the state decides that he cannot. Everyone agrees that my dad should be in a facility. Everyone, that is, except for my dad and the ladies who call and email, selling me their exorbitantly expensive at-home caregiver programs or assisted-living facilities. A facility is the recurring theme of the advice I get: in a facility, my dad can finally get the care he needs, which is a level of care that each of them is not legally allowed to provide.
Receptionists, social workers, program directors ask me if I have power of attorney, guardianship, conservatorship, something that might effectively take his choice away while transferring the liability for his care to me. To put him in a facility. They forward me websites, ask me to sign legal documents, and then they, too, go. For now, my dad has a choice, and his choice is to live a life that, to me and just about everyone who sees how he lives, is not the healthy choice, but a choice that will send him to an early grave. I also have a choice, which is to fight to take his choice away or allow him to keep living, and maybe dying, with the autonomy he desires.
Nobody wants to take responsibility. This is the main thing I’ve learned from the countless strangers who have been kind enough to break down the intricacies of the healthcare system for me over the phone, over text, in meetings. Care is a liability that nobody wants, and so to get it, you have to not only be persistent, but redundant. Collect papers, make daily notations, build your case, threaten to sue.1 (That, and find people who really want to help. That’s the other thing I’ve learned: finding care is about relationships as much as anything else.)
This not-my-problemism plays out at hospital visits, where my dad is deemed sound of mind and fit to be discharged (Your name? The year? The president? goes the standard questionnaire, and sometimes Do you know where you are?); in state rehab and behavioral facilities, where he is deemed to have early-onset vascular dementia, making him unfit to care for himself, but (also, and crucially) beyond the purview of their care. (He’s also too fit for public long-term care facilities; the name, year, and president practically inked on his body.) Everyone can’t wait to be rid of him, that is to say, to be rid of the liability that caring for him would entail. Not even I want it, having heard horror stories of what failing his care might mean for me.
Care is labor, but labor isn’t always care—and it certainly isn’t always love. Care is work. Sometimes it’s paid, and usually not well. More often, it’s not. There are 5.4 million paid caregivers in the United States and 63 million family caregivers, according to a report last year by the AARP, who deem family caregivers as those who provide “ongoing care to adults and children with disabilities or complex medical conditions.” That’s one in four adults. It’s wild to me how ubiquitous caretaking is, and how little we see it outside of the home. My hyper-visiblity wheeling my dad around Walmart becomes invisible the second we get back into my vehicle. Even when I am doing what I would consider caretaking in the world, like paying my dad’s bills from my phone or refilling his prescriptions or talking to his nurse, it doesn’t visually register, not even to me.
I can’t stop thinking about just how superior big families are. Formal or informal, it doesn’t matter—just give me extra hands. What grounds my fantasy is the reality that if my dad’s side of the family were bigger, his care would likely be managed by a mother, a daughter, an aunt, a niece, or, more likely, a consortium of women. And that gendered fact is an essential aspect, I think, to our care problem. Care is poor in this country, and why wouldn’t it be? Care is women’s work—unvalued, and also expected, labor.
Unsurprisingly, most care jobs in this country are held by women: almost 85% of home health care jobs, along with 70% of residential disability, mental health, and substance abuse facilities jobs, according to the U.S. Bureau of Labor Statistics.2 These jobs, as you can imagine, don’t pay well. The average annual wage for a worker in the elderly and persons with disabilities care sectors is only $26,000 a year. (It’s $39,000 for home health care.) These women provide care for work at less than stellar wages, and then they probably do it again at home in some capacity.
Here in New Orleans, when Shia LaBeouf made his big splash this Mardi Gras for assaulting two men at a bar I frequent, a judge court-ordered him into rehab for his out-of-control behavior. I don’t know what the statute of limitations is on the verdict, or if he ever went. Maybe he’s there now. Seeing pictures of the actor after some years, it was a shock to see how addiction had marked his face. It reminded me of how I would feel upon seeing my dad after a spell of not seeing him, wondering if this transformation was something temporary, might wash out like the liquor in his blood if he ever decided to go dry.
In all honesty, I have never thought much of Shia LaBeouf. When I have, it’s usually been imposed upon me, a nostalgic film mentioned by a friend, something in my feed about his history of abuse, a clickbait-y link about his struggles with addiction, the lore about him, like his face, having sunset into mystique. But Shia, my supposedly new something of a neighbor, has been on my mind a lot lately as I consider the legal ways I am advised to get my dad help.
And Britney. Nearly twenty years ago, a judge allowed the family of Britney Spears, another millennial icon who society deemed “out of control,” to act as her conservator. No one my age will ever connect that word to anything other than Britney, who was first failed by her father, and then by us. To care for Britney, ruled a judge, meant to take her choice away, possibly forever. Likewise, to care for my dad, I am being asked both to take his choice away and to take him out of society, which he loves, for the record, but can no longer participate in on his own terms.
The push I feel to institutionalize my dad makes me think of this passage from Health Communism, a book which I finally finished recently and would highly recommend:
Institutionalization remains a common response to disabled people, particularly those with “severe” disabilities; despite the Supreme Court’s 1999 decision in Olmstead, which affirmed the right of disabled people to live in their home communities, many states continue to prioritize funding for institutions over funding community-based care.
There’s something particular that draws me to Shia as a lens beyond our similarity in age and now proximity. It might be the way addiction looks on him, which looks a lot like it looks on my dad. Other than that, I think that when I see Shia, I see literally all that care can offer to a wealthy white male celebrity. And by seeing the full shape of care in this country, it makes it easier to see its limits.
It cannot be overstated how vast the difference is between how the public views an out-of-control man and an out-of-control woman, and the methods by which we reinforce that control. But there’s also a vast difference between then and now. In the Trump 2.0 regime, I don’t know, the Shia stuff feels like it’s landing on a different planet. In general, on my timelines and on my feed, Shia’s public unraveling seems to be placed into two files, both of which are indicative of a larger pattern of how we view care in this country. First, there’s Shia the villain beyond reproach, and then there’s the Shia who has experienced a kind of transcendence from the liberal order, from pronouns and sensitive language, to embrace a kind of brokenness which feels like the reactionary reality of a Trump public whose post-wokeness is actually dull without an adversary, and whose brokenness is worn as an I Voted badge.
Both takes on Shia shill us Trump 2.0 fantasies. The reactionary one is so tempting to men, and that’s pretending that Shia is not an abuser but just a flawed guy, which means that Shia’s patterns aren’t indicative of a larger problem of male violence, but just your normal men, Mars, women, Venus stuff. On the flipside, there’s another fantasy that Shia offers some leftists, which is that Shia is an entity that should, and might, be erased, and that the work to fight abuse, like addiction, won’t and shouldn’t be messy, on the ground, and allow ample room for forgiveness. Not a neighbor. Never lived here.
When I think of the care my dad needs, the first thing I see is all of the public transportation options I wish existed, followed by a million more wheelchair ramps. (Corny and true!) Then there are all of the mobility devices that I wish were easier to get on insurance, and more resources for how to treat those suffering the long-term effects of opioid withdrawal. And I think of community centers for the elderly and disabled that accept people experiencing addiction and other comorbidities, and that are actually a part of the community. In general, I aim to imagine something more imperfect, more human, and less punitive, something that doesn’t just treat the disabled or elderly person as a liability but as a member of society.
Maybe care is a luxury in Trump’s America, a relic of the Treat Yo Self optimism of the Obama days. But there’s a way in which we aren’t even able to conceive of it right now, only offer it as an empty condolence: I hope so-and-so gets the care he needs. Sure, court-ordered rehab, like conservatorship, is a kind of care. It’s a path out of prison, one that several of my out-of-control friends have taken. Just the same, state-run facilities offer crucial services to many in need, including providing much-needed relief to loved ones. But it’s maybe the only kind of care we’ve come to expect, which tells me that we don’t know much about care.
Until next time,
—Cory the Rat
One irony of our care system is that it’s based on a system of liabilities and determinations that are actually pretty elastic. Agencies make their own determinations and don’t really talk to each other; records are kept in-house, and it’s up to the patient, or patient advocate, or family to procure them and have them at the ready whenever you need to tell someone that this is really that.
Also unsurprisingly, private sector care jobs are the least staffed by women and pay the highest.
Hey, sorry to hear. Have care-taken. It is a lot.
Remember to do things to nourish yourself.
I care!