No care for the caregivers
My mother calls me at home in San Francisco, as I work on my computer in my kitchen. I live alone in a spacious one-bedroom. People visit and crane their heads, looking for my roommates. My monthly rent is more than I’ve ever paid, but only $300 more than I formerly paid to live with three twentysomethings—a bartender/performance artist, a banker/drag queen, and a student. I decided to move out when I found our fridge filled with sickly, shriveled houseflies. They moved slowly in the cold, among the leftovers. I realized they must have been born there, and that baby flies are maggots. I was 39 years old and feared celebrating my 40th birthday there. So I moved.
My mom calls from the lanai of her own home in Florida. She lives there with her husband. Because she is a graveyard-shift nurse and her husband suffers from a disease that interrupts his sleep with jolts of pain, their bedroom goes mostly unused. They take turns sleeping on the puffy, fake-leather couches in the living room. They sleep before the blaring television, always tuned to Fox News though neither is a Republican. The television doesn’t seem to bother them, nor do the cups of coffee they drink like water throughout the day.
My mother tells me that they’ve moved the futon from the spare room into the living room and are trying to sleep together again, there on the floor between the couches and the TV. Her husband’s disease—his spinal cord is pocked with holes and stuffed with cysts—makes it hard for him to get out of a normal bed, but a futon on the floor is manageable. They haven’t slept together in a very long time and seem to be excited, though he has already rolled off the futon once, bruising himself.
I leave my computer when my mother calls and lie down in bed to talk to her. My mother tells me her husband probably is experiencing the beginning stages of congestive heart failure. They’re not sure. He doesn’t have health care, and so attempts to understand what is making his feet swell up and his stomach bloat into a hard ball, what is making him short of breath, have not gone well.
“It’s just an awful situation with the health care,” my mother says. Her voice betrays forty or so years on the North Shore of Boston, where the accents run thick. No Rs to speak of, and certain words—say, half—have a refined pronunciation that reveals the dialect’s English roots. My mother is from New England, specifically the city of Chelsea, a place that made national news when it went into state receivership in the early ’90s. The proportion of people living below the poverty line is more than double the state average.
My mother has health insurance and her husband doesn’t. The cost of putting him on her plan is too much, but he was turned away from their local free clinic because my mother’s income is too high. I don’t ask my mother how much money she makes; it seems rude. On occasion my sister and I send her checks, most recently when she broke her knee at work and needed groceries. Through a series of bureaucratic bamboozlements my mother was not given any paid leave for her accident. Her time away uncompensated, she returned to work too soon, on painkillers and in a wheelchair, to care for a ward full of seniors, some younger than she. She’d hurt herself slipping in a puddle of urine.
My mother’s friends tell her to lie and say that she and her husband are separated. He can get a post office box and redirect his mail there. My mother can say that she allows him to stay in the house at night while she is at work, but kicks him out in the daytime. This could help him get better health care.
“I can’t do all that lying,” my mother says. “You shouldn’t have to go there.”
In San Francisco, where I have lived for almost twenty years, I have had health insurance three times: for one year while working at a housing clinic, facilitating lead removal from low-income apartments in the Tenderloin; for one year while working at Mills College, teaching fiction; and for the past five months, since my partner put me on the insurance she gets through her employer. The majority of my care has been through the city’s free clinic system. I could walk into any clinic, wait all day, and eventually be seen; with a little paper card my medicine was five dollars. The staff worked to find ways to cover patient costs. Though I am a lesbian, for years my annual gynecological checkups were covered through a federal family-planning fund. The free clinic closest to my mother and her husband is open just one day a week, on a first come, first served basis.
My mother’s husband was just rejected for Social Security benefits for the third time. She says that having more than a high-school education worked against him, as well as how much money he’d made the year before he got sick.
Both my mother and her husband attended the School of Practical Nursing offered by the Soldiers Home in Chelsea, a vet’s hospital. The program is free and you work at the home after graduation. My mother graduated when I was 9 years old, then promptly divorced my father; I often think of the program as a way of giving the city’s many uneducated women in bad marriages the tools and the income to get out.
It was while working at the home that my mother met her husband. He was an orderly with homemade tattoos on his fingers and an earring. She was scared of him. They married a year after her divorce, and within another year he too attended the Soldiers’ Home and got his LPN.
My mother has continued to work in geriatric nursing, even though she dreamed of being a pediatric nurse. The extra year or two of schooling needed to get her RN, with its attendant pay scale and increased opportunities, has been decided against; my mother has said she doesn’t want to be like “those people.”
“What people?” I cried. “People who make more money? People who live more comfortably?”
“They think they’re better than everyone,” my mother said. “Plus, I’m too old to go back to school.”
Recently, my mother tried and failed to get a part-time job at the BigLots! near her home. The management feared she would be bored. She dreams of working at a bookshop, or as a Walmart greeter. Something that seems light and easy after decades of caring for the dying.
Before he became sick, my mother’s husband was promoted to manager at the assisted living facility where he worked. He had to wear a tie, which disturbed him. He was asked to overcharge patients from wealthier families to make up for the drag of the poorer residents. He also was expected to discipline his fellow nurses and aides. He quit. My family is not cut out for positions of authority; having spent too much of our lives resenting those in charge, the transition into such a role is psychologically impossible. For years, I thought that my own raging against the upper classes, my resistance to bettering my standing, was a punk-Marxist stance born of my own moral spirit. It wasn’t until my thirties that I realized I was parroting everything I’d heard at home.
After leaving the management position, my mother’s husband found work as a home-care nurse. He would drive to different housebound patients, administering medicines and routine care. Apparently, he was a favorite. Both he and my mother are proud of what good nurses they are. My mother has told me the very first thing she does when she gets to work is wash her patient’s eyeglasses with warm water and soap, an image I can’t dwell on too heavily. The tenderness and the duty of it strikes my heart.
Both my mother and her husband talk to their charges like equals. They treat them with compassion and respect. They possess a certain snobbery about having received their training in New England—in “Boston,” my mother will stress. Not in Florida or any of the other Podunk regions where her coworkers were certified. My mother did internships at Brigham and Women’s Hospital, at Beth Israel. A New England health-care education is world-class.
When he was still working as a home-care nurse, my mother’s husband began to chafe against his job. He did love the freedom, alone in his truck listening to Aerosmith on his way to his next patient, goofing and palling around while administering care. But management wasn’t reimbursing his mileage, and gas is expensive. Plus the wear and tear on his truck. Although the agency he worked for sometimes wouldn’t have work for him, they forbid him to sign up with other agencies. Then he became sick and a job was no longer an option.
A combination of shames keeps my mother from sharing her and her husband’s problems. She doesn’t want to be a burden on her children. Parents are supposed to give their children money, support, help, not the reverse. She doesn’t want me to worry. I’ve had a strained relationship with her husband, and perhaps she doesn’t want to give me more reasons to wish they weren’t together. Her husband, too, can be secretive. Sometimes I think they’re both shady. It can seem like they’re hiding things, not telling the full story. Maybe they’re not.
The last time my mother’s husband left Florida was Christmas 2007, when they came to San Francisco. My sister came as well, with her husband, and his family. My sister and I put my mother and stepfather up at a hotel in Union Square, in the middle of the hustle-bustle, where the cable cars clang all day. We hadn’t expected him to be so sickly. The three blocks down Powell to grab a hamburger in the mall food court almost killed him. He seemed to be in tremendous pain as he walked, the kind of pain that evicts you from your body. He seemed both intensely focused on moving forward and also totally checked out, ignoring his body’s command to stop.
“What’s wrong with him?” my sister asked in the hotel lobby. “He’s going to need a wheelchair.”
“Oh, he’ll shoot himself before he ends up in a wheelchair,” my mother said, fearful and defensive. “Or winds up in a home, god forbid. He’ll kill himself.”
Suicide as a sane response to a more draggy ending is something my family has always championed. “A bottle of Seconal and a six-pack,” my grandmother would say about her time, should her time come preceded by cancer or dementia. And it did, by lung cancer at the age of 54, and there were no barbiturates or alcohol, just a painful, drawn-out death at Massachusetts General, where she lay in bed convulsing, bald from chemotherapy, her body shrunk and whittled into something resembling a Chinatown chicken.
My mother shared her depressive death wishes with me until I ordered her to stop, and still she lives.
In San Francisco my mother took her husband to a traveler’s doctor downtown. He saw a doctor after-hours, late in the night, and was given a prescription for painkillers that could only be filled at the 24-hour pharmacy in the Castro. She took a cab there and back to fill it. I learned this the next morning, when it was all done and her husband was floating on a cloud of pills. Actually, he wasn’t floating, not in the way narcotics lift you when you don’t actually need them. He was just normal. The medicine had absorbed his body’s struggle and he could be among us on Christmas Day, smiling, excited to see San Francisco, hanging off the side of the cable car that took us into Nob Hill, to the French bistro where we ate our holiday dinner. He had beef Wellington for the first time and found it pleasing, as did I. We both enjoyed the lobster risotto. We’d agreed on a “Secret Santa” plan to stop everyone from spending money on everyone, but my mother cheated and gave me a light blue sweater from Old Navy. My sister’s mother-in-law picked up the bill; on the cable car back downtown she shoved a pocketful of bills into the operator’s gloved fist and expressed sympathy for his having to work on Christmas. He dinged the bell at her.
In the hotel lobby I said, “Ma, you should have called me, I could have gone to the Castro for you, I could have come to the doctor’s.” But my mother didn’t want to worry me, she was too busy worrying about me: my recent breakup, my new AA sponsee. My mother was happy I wasn’t drinking anymore, but she didn’t like me hanging out with so many alcoholics.
All we want to do is feed our mother when she visits, and buy her things, as if we could save her with tuna sandwiches and hamburgers and tchotchkes from the Disney Store. But she is our mother, and all she wants to do is take care of us, pay for lunches and dinners and buy me cast-iron pans and glittering silicone spatulas from the fancy kitchen shop by the water. It is hard to accept things from my mother, but to refuse them robs her of her dignity, her desire to be a mom taking care of her kids. It would take from her the feeling that all is right with us, that our family demonstrates the natural order of things. Kids don’t take care of parents, not until they’re very old, anyway, and even then you inherit something, don’t you?
My mother and her husband make ridiculous decisions with money. The way that she came into any at all was by throwing out her back at work in the ’90s. Her settlement was enough to buy a house in Massachusetts. Soon after, my sister and I confronted her husband about his creepy behavior when we were younger, drilling holes in walls around the house in order to spy on us. The family fell apart for a while, which my mother dealt with by maxing out her credit cards on trips to Disney World. Her husband became a certified diver and took trips off the Keys, swimming with whale sharks. Eventually they decided to live inside their vacation and moved to Florida. She sold her home to her husband’s brother at a deep discount, not even bothering to get what they paid for it. Her brother-in-law had been struggling, with a lazy wife who wouldn’t work and two teenaged boys, plus houses in Florida were cheaper.
About a year after they moved, the brother-in-law sold the house at a profit and joined them in Florida. The next house he bought was bigger and had a cage pool.
When a hurricane ripped apart their town, my mother’s house was spared, but she was traumatized by the experience. The windows on her floor of the managed care facility imploded, spraying glass on her patients. The tornado in the parking lot created an otherworldly atmosphere that popped her ears and sucked the elderly toward the hole in the wall. She found her staff, a group of certified nursing assistants from Trinidad, holed up in a nurses’ lounge holding hands and crying out to Jesus, and ordered them back into the ward. When she returned home, her house was so obscured by fallen trees she thought it was gone. She cried with relief to see it wasn’t, and she cried for the next month, erratically bursting into tears while buying a flat of water at Home Depot and while talking to me on the phone from her house, a dark and oily place powered by generators, the windows boarded, fans replacing air conditioning, weakly trying to push out the Florida swamp. When a man came around offering to haul downed trees out of their yard, she paid him up front for three days’ work. He was a stranger, but he had a little girl with him and seemed like he needed money, and she felt bad. She gave the little girl lemonade. The man worked for half a day and never returned.
When my sister got married, my mother’s anxiety about the cost of the wedding consumed her. She decided to sell the lot that came with her house. It didn’t matter that the wedding was paid for, or that her plane tickets and housing would be taken care of. She wanted to help. She wanted to buy a dress and pay for a lunch the day after the wedding. The possibility of a sale rose and fell, rose and fell.
“Do you know about Joseph-in-the-Ground?” my mother asked me. European Catholic nuns once buried statues of St. Joseph outside property they wanted for their convents. Now people buried the statues on their own property when they hoped to sell their homes. She’d purchased a St. Joseph home-selling kit from a Catholic supply center and dug him into the lot. She signed off on a fast sale, less money than she could have gotten had she waited, but the wedding was coming.
My sister tried to block my mother from spending any of the lot money on the wedding. She wanted her to put it in the bank. I told my sister that she needed to let our mother pay for the lunch. “It’s important to her,” I said. “She needs the dignity to make her own decisions with her money.” My sister’s therapist said this was true, and so my mother paid for the lunch.
My mother’s husband’s medicine runs her $400 a month. It is harder and harder for him to get his prescriptions filled, as their region of Florida is plagued by “pill mills,” illegitimate pain clinics staffed by doctors who will prescribe morphine and OxyContin to addicts. Morphine and OxyContin are his medications. The pain clinics have become tiny police states, with all patients presumed to be guilty addicts by the cops who patrol and raid the places. Squad cars idle in the parking lot.
Because he is not insured, her husband can get his prescription at the pain clinic, but he can’t get it filled there, as they don’t take cash. He goes to the pharmacy at Walmart, but they are clean out of narcotics. He finds a private pharmacist who is scared to take on a pain-pill client. My mother’s husband talks him into it.
Why do some people have really, really hard lives while other people’s lives are easy? Why don’t I have a degenerative spine disease? My mother learned from another friend from Chelsea that three other men of her husband’s generation have strange spinal disorders. They all grew up in the same neighborhood, a series of streets that dead-end into a large waste dump.
“What are you gonna do,” my mother says, and it’s not a question. “It’s just what’s going on.” She’s talking about her husband’s body. “It is what it is.”
My mother and her husband are the least healthy health-care professionals on earth. They have done nothing to supplement the education they received in the 1980s. They chain-smoke and have resigned themselves to the deaths they’ll be rewarded with. My mother reacts with fury against the antismoking legislation popping up around the country. When she arrives in California, she’s not allowed to smoke outside the airport. In San Francisco, she cannot smoke in parks. “Before you know it, they won’t let you smoke in your own house,” she rails.
“Mom, you’re paranoid,” I say, “People just don’t want to breathe in cigarettes, it’s gross.”
“I know,” she says, slightly ashamed. “It’s terrible.” Her addiction butts up against her desire to make everyone happy, or not make anyone mad.
Her husband has a high white blood cell count. “What does that mean?” I ask. “How did you find that out?”
“When we went to the free clinic and they told me I made too much money,” she says, scoffing. “They handed him an inhaler and sent him home.”
“How is he doing today?”
“He’s down in the dumps.” Her husband has been depressed about his condition, about his inability to contribute to their life. To compensate he’ll mow the lawn or take on a chore beyond his ability, which results in falls and increased pain. He has burst into tears, afraid that she will leave him. For years my sister and I have wanted her to leave him. Now if she leaves he’ll die.
“If his feet swell up bad again, we’ll go to the emergency room,” she tells me. “He’s not in dire straits, like I need to call 911 or anything.” “Dire straits” is something my mother will say a lot. They’re waiting for him to reach this level to bring him in. But I wonder if they are able to accurately recognize what “dire straits” looks like. To me, they have been in dire straits for quite some time.
“His feet came down some once he put them up on pillows,” she explains. “They were so red and shiny.”
It is hard for my mother to explain a situation in a straightforward manner. I think she is in a state of perpetual overwhelm. “Why are there fluids in his feet?” I ask her. “It’s a congestive heart failure thing,” she says. “The heart’s not pumping, and the fluids pool in the feet. I noticed Thursday or Friday, he took a shower and came to sit down. I said, ‘You don’t look good.’ He was huffing and puffing.” My mother got one of her nurse tools, an oxymeter. “It’s a little gizmo you put on your finger and it tells you how much oxygen is in your blood. I said, ‘Put it on and go walk into the kitchen.’”
He shuffled into the kitchen, where their untrained Maltese, Kira, pees on newspapers on the floor. He shuffled back.
“Ninety-one,” she said. “Not good. We put people on oxygen at 92. But then it went back up again. He’s not in dire straits.”
Who says dire straits? They’re a band. There are all sorts of old, regional phrases that my mother carries on. “Not for nothing.” As in, “Not for nothing, but I should have looked into the situation for nurses before I moved to Florida. There’s no union. It’s a right-to-work state, meaning you have the ‘right’ to work, and they have the ‘right’ to fire you.” Or, “Light dawns on Marblehead.” Marblehead is a fancy town by the sea in Massachusetts, but it is also your own thick-headed noggin, slow to understand.
“He’s going to talk to his doctor,” my mother continues. “He wants to get off some of his medication.”
“Wait, I thought he doesn’t have a doctor,” I said.
“His pain-management doctor, at the pain clinic. She does labs but she’s not his primary care. He doesn’t have that. I could have him go to Mapatan”—that’s her doctor—“but he won’t do shit. He’ll say ‘Put your feet up and watch your salt.’”
“You don’t know that,” I said. Is it because my life is so comparatively easy that I’m quick to access hope? Because my life has turned out well, do I presume everyone else’s will, too? “Why don’t you just try Mapatan?”
“Because he doesn’t have insurance. They don’t take uninsured patients.”
I begin a rant about the Hippocratic Oath. Don’t all doctors take a pledge not to let people die? I am ruined from a life in San Francisco, where people like to do good things.
“We’ll see,” my mother says. “Like I said, he’s OK right now. I’m a realist, Michelle. He’s got a disease process in his back. He’s a heavy smoker, though he’s cut his smoking way down, and people get sick.”
I am relieved that my mother is so detached, because I fear her being in emotional pain over her husband dying before her eyes. And I am chilled by her detachment. When they found a cancer in my grandfather’s nose, my mother was also a realist. “He’s an old man,” she repeated. She didn’t think surgery was a good idea. But they fixed the cancer and he lived another decade.
“I don’t think I’m exaggerating,” she says. “I just know what I see. And his belly’s gotten huge.”
I would never think that my mother was exaggerating. My mother, and our whole family, downplay everything—they do not exaggerate. For years, my mother would play the lottery, elaborating humbly on how she would spend the money. “I’d keep some,” she’d say, “But I’d give it to you kids, I’d give it to Papa and Willie”—Papa’s girlfriend—“I’d give it to Darlene and the kids, I’d give some to Carlie.” It was a prayer of sorts. My mother is truly Catholic, and believes that selfless altruism is rewarded with the granting of more selfish desires. The pagan roots of her Irish Catholicism exist within her without her knowledge, her prayers often resembling spells. In her cold acceptance of death she is a Scorpio; in her work she is Hecate, ushering the dying out of life.
My mother is explaining her husband’s body to me. “It’s just that your heart doesn’t pump right, so the fluid in your body, instead of it moving it stagnates. You got valves in your legs that pump the blood back into your heart.”
“What is the fluid?”
“Blood, plasma, lymph fluid. Your blood isn’t just blood.”
“What does he want to do about his meds?”
“I think he wants to get off all of them and start all over again and see how he does without them. They don’t know enough about syringomyelia.” That is her husband’s disease. When he was diagnosed my mother called and asked me to look it up on the internet, something she didn’t have. I printed out pages of information and sent them off to Florida in an envelope. “Duke, UCLA, and Mass General are just starting to do tests,” There is a new medicine available, called Neurontin. “It’s for neuropathy pain, from nerves. It’s not a narcotic.”
“The whole thing is no health insurance,” my mother says. “You can’t even go in and get it straightened out. We’ll see what we can do. It seems to be a chronic thing—it’s not like, ‘Oh my god, I’ve got to call 911, he can’t breathe.’ But the shortness of breath is new.” When Obamacare was rolled out, my sister and I had a flare of hope that this could be what they needed, a way to save my mother’s money and get her husband actual care. But their state, Florida, has one of the more complicated systems. Their aversion to the internet, to paperwork and authority, to the government, doesn’t help.
Her husband doesn’t want to go to the hospital anyway. “‘Oh yeah, and there’s another bill for you,’” she mimics him. “‘And I can’t contribute.’ But I don’t care about that. You think I care if I get a $2,000 bill from the ER? Seriously, I’m 62, what are you gonna do about it? I’ll give you $10 a month, as long as you give them something, what are they gonna do?”
There’s no debtor’s prison, my mother is fond of saying, and good thing. She went bankrupt traveling to Disney, moving to Florida, installing a hot tub inside the house they eventually lost.
“I’m reading a lot about that generation,” she says, referring to her husband, a decade or so younger than she. “The ’60s and ’70s. People did a lot of shit and it took a toll on them, their livers and hearts, and it’s showing up now.”
I wonder if he could have hepatitis C, like a lot of people who once shot drugs.
“They were wild childs,” my mother says, and shifts from vaguely cavalier yet agitated to somber and guilty. “Part of me feels bad for talking to you about it. I haven’t even talked to you in a week and now I just dump all this on you.”
The doorbell rings and Kira the Maltese begins to bark wildy. “Hold on, it’s my pizza,” she says. I wait on the phone while she pays the delivery guy. My mother doesn’t have many people to talk with. Maybe some casual friends at work. A couple old flames from childhood she’s reconnected with on Facebook, both with sickly wives. They commiserate. Her parents are dead and her only brother is a mentally ill drug addict so far gone that it’s impossible to tell when he is high and when he is having an episode. She comes back on the line.
“I think you need to talk about it,” I say to her, and she says, “I guess I do.”
We have confusing boundaries, my mother and I. I have forbidden her to share so much of her pain with me, because I didn’t want to hear how she wanted to die. When I wouldn’t speak to her husband, I didn’t want to hear about how hard it was for her.
My mother’s pizza is getting cold, she has to go and eat it.
“I love you,” I tell her, and she counters with, “I love you more.” It’s what she always says. “Kisses and hugs,” she sing-songs, and makes a bunch of squishy kissing noises into the phone, and hangs up.