by Sunita Puri
“That’s a lot to take on by yourself,” I said, genuinely surprised that Dave was using his declining reserves of energy to undertake such mammoth tasks. “Can your son help out at all? Maybe he can give you lifts?”
“He’s out on parole, Doc,” Dave said, and took a puff of his inhaler. “Probably best if I keep some distance from him.”
I nodded, hoping that Dave would offer more, but he didn’t. He had just used his inhaler, but he stopped again to suck air inward through his pursed lips, raising his shoulders, exhaling softly.
“How about this,” I proposed. “Why don’t you have a think about trying the liquid morphine? I’m talking about an incredibly small dose, a baby dose, because that might be all you need to get some relief. We can talk about it some more next time if you want. I could even print out some information for you if you want to read it over.”
“Sure, I’ll think about it,” Dave said. “No need to print anything out right now.”
I nervously watched Dave gather his oxygen tank and adjust his nasal tubing, pausing for a sharp inhale before he got up and exhaled, inhaling again before he got to the door. How was he managing at home? I wondered after he’d left, realizing that I’d neglected to ask about that huge, essential part of our conversation because I’d been so focused on getting him feeling better. As I wrote my note in his chart, I added a reminder to ask the questions I hadn’t at our next appointment in two weeks.
* * *
I moved through the rest of my day feeling unsettled, and it took me until the evening to understand why. Dave’s breathing pattern reminded me of my grandmother, who had died of emphysema thirteen years earlier, in July 2000. It wasn’t cigarette smoke that stiffened her delicate lung tissue, rendering it unable to stretch and accommodate the tides of breath she gasped for. It was just the air in Mumbai. Breathing it daily for many years made her sick, my mother told me. She had survived the violence of India’s independence only to settle in a city whose air would take her life.
My grandmother enjoyed stretches of respite from Mumbai’s air only during her trips to Louisville, Kentucky, when she visited my mother during her residency. Without speaking a word of English, my grandmother had somehow secured a visa and passport and made her way from Mumbai to New York, catching a connecting flight to Louisville. She clasped a note that my mother’s brother, Uncle Raju, had written in English to help airport staff in New York direct her to the correct gate: “Please help me find my flight to Louisville. I do not speak any English.”
After my birth, she witnessed my mother’s struggle to balance caring for me, her first child, during an unforgiving residency that allowed her only two weeks’ worth of maternity leave prior to returning to a grueling training schedule and her looming licensing exam. Watching my mother’s fatigue grow, my grandmother offered to take me back to Mumbai and care for me until my mother completed her exams.
One week after this discussion, my mother covered me with kisses and tears, watching from the window of our tiny apartment as my father drove my grandmother and me to the airport. She wondered if this was migration’s jagged edge, the price she must pay for leaving Mumbai: that her daughter, new to this world, would spend eight months in the old world without her mother.
I was just six months old. While I don’t remember much about the eight months I spent with my grandmother, black-and-white photographs from that time suggest that I was happy: I slept next to my grandmother in a small bed in my uncle’s flat, where she now lived. She fed me the rice and lentils she had fed my mother, and I would clap my hands and smile afterward. She had me vaccinated against tuberculosis by a local pediatrician. The characteristic imprint of the BCG vaccine on my left shoulder—an imprint that marked my parents and many immigrants at that time—is my only reminder of our time together.
I saw her five more times over the next twenty years during trips to India I took with my parents and, in college, by myself. Between trips, we spoke during brief phone calls, though we struggled to hear each other because of the crackling static of the phone connection and the gradual worsening of her cough and raspy voice. My mother was the only one of her siblings who lived overseas. She saw my grandmother on her trips to India, many of them taken alone, when she volunteered as an anesthesiologist at several different hospitals. “The time you spent as a baby with your grandmother was very special to her,” my mother told me once. “When you were with her, it was like I was there, too.”
The last time I saw my grandmother, in 2000, I’d chosen to spend the summer in Delhi working for a nongovernmental organization. I’d seen her the summer before as well, but in just a year her slender body had become skeletal, her ribs visible underneath her sari blouse. Her hands, which had previously held, comforted, and fed me, were cold to the touch, her fingernails blue from her body’s chronic struggle for oxygen. Her face, bloated from taking steroids to ease her breathing, seemed misplaced atop her shrinking frame. She required constant oxygen, just like Dave, and could no longer cook, bathe, or dress herself without help from my uncle Raju and his maid, Anu. He and Anu bathed and powdered her every morning. I watched him tenderly feed her spoonfuls of daal, rice, and mixed vegetables with the same tenderness I imagined she had fed me.
When she took naps, I sat or lay down next to her, watching her breathe, alert to signs of danger. In the afternoons, we’d sit together on her bed and look out her window. She pointed at the families of white cranes in the trees across the street. Several females, long-legged and with pristinely clean feathers, jumped from branch to branch, bringing food to their peach-fuzzed young. “Bagala,” she said when I asked my grandmother the name of these birds. They seemed oblivious to Mumbai’s cacophony. Bicycle bells sounded as they weaved between cars and large trucks adorned with colorful decorations and “HORN PLEASE” painted on their bumpers. Thin men pulling wagons full of brick yelled at one another across the street. Hindi film music blared from a chai stall, where two teenagers swayed their hips as the chaiwalla poured steaming tea into small steel cups. Two cows huddled together in a patch of shade and mooed at each other. My grandmother laughed at the cows’ loud conversation and quickly grew breathless. She took a puff of her inhaler and her breathing became more regular. I asked her repeatedly what I could do to help her feel better. She told me she felt fine, that I worried too much, just like my mother.
How are your studies? she asked me. She’d alternate speaking to me in delicate, precise Hindi and rougher-sounding Punjabi. I joked with her that I was getting married soon, and she grabbed my hand and said, No! You must finish your studies first! This was an unfathomable response for a woman of her generation. I suddenly teared up, moved by how her progressiveness had enabled my own life, knowing that she had encouraged my mother with the same words.
Though I watched her shrink and gasp for air, I couldn’t admit to myself that she was dying. I avoided the subject with Uncle Raju, though I did ask whether she should see a doctor. She wants to stay at home, he would tell me. Trying to take her to a clinic at this point would simply tire her. I pressed him, telling him I was worried when I saw her gasp for air. Did she need a different medicine? A more powerful oxygen mask? It passes when she takes the medications she has, he told me. He took mild offense at my suggestion that a nurse or caregiver should help take care of my grandmother; taking care of his mother was a duty and privilege he wouldn’t dare share with anyone outside the family. But, he admitted, sometimes he didn’t know what to do for my grandmother when she became breathless even when she used her oxygen and inhalers and steroids. He and Anu would sit with her, giving her extra doses of medications and praying, waiting for these stretches of breathlessness to pass. I’d pull myself close to her thin frame when she gasped at night, wishing I could give her my lungs, my breath. When I took showers, I’d let myself cry, my tears mixing with the water my uncle had warmed on the stove and placed in a bucket. I’d use a smaller plastic bucket to scoop water from
the bigger bucket and douse myself, rinsing away my shampoo and my tears. I scooped and cried, scooped and cried, and emerged with puffy eyes and red skin that I’d blame on the warm water. I was overwhelmed by my powerlessness to ease my grandmother’s suffering when she’d eased and prevented my mother’s, and mine.
* * *
Dave missed his next appointment with me. Worried that he had been admitted to the hospital, I called him. I didn’t usually reach out this way. I was accustomed to patients’ missing clinic appointments with me in residency, but I didn’t know Dave well enough to guess at the reason that could justify his absence. Had he simply been too busy that day, or had he forgotten, or gotten sicker? The phone number listed in his chart rang endlessly but didn’t lead to voicemail. He had no other number, and his emergency contact turned out to be his brother, the one who’d recently died. Surprisingly frantic, I checked the roster of hospitalized patients at the veterans hospital, looking for his name. I wondered if I’d missed a sign of something serious; should I have admitted him to the hospital when I’d seen him?
It turned out that he’d rescheduled his appointment for the following week, and the clinic staff had simply forgotten to tell me. When he arrived, he told me he’d had to miss our appointment because he’d been called to his brother’s house to meet a contractor. “I’m sorry I worried you, Doc,” he said, and my brief annoyance with him dissipated.
Dave told me he didn’t have a cell phone. And his landline didn’t go to voicemail because it wasn’t really a landline. “I live in . . . well, an unusual place,” he said. “It’s not exactly a home.”
Confused, I asked him if he could tell me what he meant. “I basically rent a part of a warehouse,” he said, “and the landline I have is kind of the back line to where the workers are in the mornings. Landlord checks up on them by calling that number, so there’s no voicemail.”
Dave described his home as a spare room he rented for somewhere around $500 a month, the most he could afford to pay in the pricey Bay Area. But it didn’t sound like a spare room to me. Dave told me he slept on a green cot that he folded against a wall. When he awoke in the morning, he took a shower in a tin basin after filling a bucket with water from the sink. It took more than ten minutes for the water to warm, and because he didn’t want to waste water, Dave took cold baths. There was a toilet right next to the sink, and each night Dave unfolded his green cot a few feet away from the toilet so that he could use it without walking too far and tiring. There was a partition separating the toilet from the rest of the room, but no other furniture or closet. He stored his clothing in the back of his truck, where he often ate. He went to coin laundromats when he needed to. “The owner, he’s pretty nice. Understands my situation and lets me be. But I don’t want to stay there forever. Right now, it’s working out pretty good.”
Dave’s room wasn’t designed to be anyone’s home. Nobody called or stopped by to check on him. His breathlessness dictated the circumference of his living space. His cot and toilet were only a few feet apart. But there was at least fifteen feet—an increasingly intolerable distance—between his cot and the doorway. This morning, his bath had taken an hour. He’d walked from his cot to the sink, filled a bucket, carried it back to the tub, bent down to scoop water, and stood up to sprinkle it over himself, all while making sure his oxygen tubing remained in place. When I asked, he told me he didn’t have a rail to stabilize him if he felt dizzy, and couldn’t sit down in the tub because it was too small.
Still, he insisted he was managing. He knew that he could fill the prescription for morphine that I had given him, but remained ambivalent. He still had so much to do, he explained, and didn’t want the morphine to slow him down. He repeated what he’d told me last time—that he’d think about using the morphine when he really needed it. I told him that we needed to update his emergency contact since his brother had passed away. Did he have another person in mind? “I’m afraid I’ll have to think about that, too,” he said. “Is your son a possibility?” I asked. I sensed that their relationship was tense but naively hoped for an olive branch.
“I wish he could be,” Dave said. He told me that he didn’t know which came first for his son, the drugs or the mental illness, the outbursts of anger or the street fights and arrests. Soon, Dave became a victim of his son’s increasingly unpredictable behavior. “He thought I was out to get him or something, and he tried to strangle me when we were at the park one day.” A passerby called the police, who arrested his son. Dave hadn’t wanted him arrested; he did not believe that his son intended to kill him. But precisely because he was unpredictable and now out on parole, his son didn’t know Dave’s address or phone number. Dave called his son from his landlord’s cell phone, blocking the number first. But even though he feared his son, he remained focused on fixing his brother’s house so his son would have a place of his own. “He may be a sick kid, but he’s still my son. Looking out for him will always be my responsibility.” Dave wiped his eyes as we spoke. It was the first and only time I’d see him cry.
Many of Dave’s friends had died, so he wondered if he might ask his landlord to be his emergency contact. He felt secure in his warehouse, though I wondered if he had ever considered living in a place with more support—a place I instinctively knew he’d refuse because it didn’t seem like he was ready to accept just how bad his emphysema was. Still, I tried.
“Have you ever considered living in a home where nursing staff and others can help care for you? You’d get help with bathing and cooking and the staff would look out for you in case you got sick or your breathing became a big struggle or you fell.”
“An old persons’ home? No. I’m not there yet, am I, Doc? I need my own space and my independence,” he said firmly. “I really appreciate the idea, but I think I’ll know when it’s time for that. Right now I can still manage on my own.”
Another idea came to me. “What if we could get a team to visit you who could check on you once a week or so, and make sure you are feeling well between your doctors’ appointments?”
He paused to consider this. “Yeah, like a visiting nurse or something? I had a friend who had that.”
Home-based palliative care, like the palliative care clinic, gave patients access to palliative care services outside of the hospital, when they were still living in their homes. Yet because both were also far less commonly available than palliative care services in the hospital, not every patient who qualified for these services could actually receive them. Not every health system had palliative care specialists, and not every health insurance covered home-based palliative care. I hoped that I’d be able to get Dave into a home-based palliative care program, but needed to be sure he had access to this service before promising it to him.
“I’ll look into the home program, and you’ll talk with your landlord about being your emergency contact, and you’ll also try the tiny dose of morphine one night,” I said, recapping our discussion.
“If I do the home program, could I still come to the clinic and see you?” Dave asked.
“Of course,” I told him. “I wouldn’t recommend it if I lost you as a patient,” I joked.
“I wouldn’t do it if I lost you as a doctor!” he said, his laughter giving way to loud coughs.
* * *
I brought up the question of home-based palliative care for Dave when I spoke with my supervising physician that day in clinic. I worried it would be a long shot, but the answer I got was still unexpected. “You say he lives in a warehouse?” she asked. “I don’t think he will qualify for the program. You have to have a residential address. You may want to check with the social worker, but I don’t think we’ve been successful in the past in these situations.”
Our clinic social worker came by shortly after I called her and explained Dave’s situation. “I think a home program is a great idea for him. What’s his home address? I see only a P.O. box here,” she said, opening his chart and
trying to find out which home programs might cover his neighborhood. “Well, he lives in a part of a warehouse that the landlord rents out to him,” I said, scouring my notepad to see if I’d gotten his address.
“Uh oh,” she said, removing her glasses. “Well, this will complicate things, because the agencies we contract with can go to the patient only if he has a residential address. And a warehouse wouldn’t qualify. At least I don’t think it would. I can call and ask.”
It took me a minute to wrap my head around her words. Just a year ago in residency, I’d known of homeless patients at the county hospital placed in shelters or temporary housing while they received chemotherapy. If our system could find a way to house a homeless patient undergoing chemotherapy, wasn’t it possible to arrange for a visiting team to treat Dave’s shortness of breath so that he could drive his truck, walk more comfortably, and work on fixing up his brother’s house for his son?
“If we can’t do home palliative for him, are there other things you would suggest?” I asked, convinced that there must be something we could do for Dave. “I did offer the option of a nursing home but he wasn’t having it,” I said.
“Why don’t I help you out and meet with him?” she asked. “He definitely needs a social worker.”
“That would be amazing,” I said. “I feel weirdly torn up about his case. He’s doing all this legwork for a son who tried to kill him, when he’s clearly stressing his body trying to do it all. And I don’t think he has much time left. I just wish he would use it to take care of himself.”
