Hanging in There Till the Living End
Joy Harvey, 1943 - 2023
Sitting by the pool in Oakland on a Monday slotted as the last morning of our first vacation since 2019, my wife Carola realized that she needed to check in at Jones Street, where her big sister Joy was seriously ill in the same 1840s Greenwich Village building where they and their two older siblings had grown up. The news that Joy was now suffering from a syndrome we’d never heard of called “terminal agitation” was so alarming that after urging Joy to “hang in till I get back,” Carola tried to find us a redeye instead of waiting to fly home as scheduled the next morning. But it was no go. Instead we landed at JFK at 8 p.m Tuesday, spent a full hour retrieving two bags from JetBlue, took a pricey cab to our East Village apartment, and at 10:30 took another cab to Jones Street, where we soon learned more about terminal agitation. Joy had hung in there, but not by much—it was scary.
Although I’ve delivered more than my share of eulogies going back to my grandfather’s in 1971 and been near many deaths including those of both of Carola’s parents, I’ve only seen one person die. That was my father, just turned 90 in 2006, when I hope he could hear me murmur “Thank you. Thank you” as he expired from what I concluded, once I saw how skinny this athlete who was still playing tennis at 80 had become, was what is sometimes called “Alzheimer’s suicide.” He didn’t have Alzheimer’s, but my mother did, so he’d been moved up to the dementia floor of their senior residence to join her, which could be grim: at a round table I witnessed up there, everyone was asked to name something beautiful and he pointed across the room at his shrunken wife, who did not respond. So I believe he starved himself to death, just stopped eating. A week or so before he died, awaiting transportation from a downtown hospital back to the residence, he asked me to get him a hamburger, but concerned about missing our ambulance I didn’t; a day later I bought him one on my way to visit, but he wouldn’t touch it. I still think about what a jerk I’d been. I remember that ambulance ride too—remember him hoisting himself up so he could look at the world one more time out the window, then back in his room asking to be taken “home” because he refused to recognize the residence as any such thing.
I and especially Carola had spent real time with Joy in the past few months, particularly an afternoon at Lenox Hill Hospital where we conversed with Joy’s stalwart husband Larry while his wife got liquid drained from her lungs in the hope this would ease breathing already restricted by the tumor that had been diagnosed in May. Her heart too weak for her to survive surgery, she’d had test after test all summer to determine what her treatment options were. We were hoping she was a candidate for immunotherapy, but by the time all the tests were done she wasn’t. After four days at Lenox Hill she was sent home and told she’d have to return for yet more examinations if she was to be treated with her one remaining option, radiation. She chose home hospice, knowing she could go off it if more aggressive treatments presented themselves.
Carola visited Jones Street again before we flew to Oakland, a destination we chose primarily because we hadn’t seen our friend Greil in the year‑plus since he survived two open‑heart surgeries and then endured the cancer death of his 53‑year‑old daughter. Joy’s affliction was cancer too, but where Emily succumbed to a strain so rare it was all but untreatable, Joy’s was the one that had killed two of Carola’s old friends—lung cancer. Both these friends had managed to quit smoking in their thirties or forties and died of lung cancer anyway. But nicotine being the devilishly addictive poison it is, Joy, who’d started smoking at 10, ultimately managed to cut down but never to altogether stop. There are nonsmokers who contract lung cancer and smokers who never do, and Joy’s case surfaced relatively late in life—she turned 80 this past New Year’s Day. And sure, everybody says this. But I’m saying it loud. Quit smoking. Nobody claims it’s easy. Try.
Over the past 15 years Joy had been in and out of emergency rooms due to heart‑ and lung‑related crises—COPD, atrial fibrillation, stents—without losing her fundamental vitality for more than a few days. So months before she was hit with a final lung cancer diagnosis she was briefly cheered when one doctor came up with the theory (also offered to one of Carola’s now‑deceased friends) that her problem might actually be acid reflux. Having long devoted her phenomenal energy to Larry’s illnesses, she refused to give up on herself, which is why she grasped at the immunotherapy straw while she could. Her daughters Jessica Harvey, a UFT activist, and Gwen Fernandez, a physical therapist who also leads a salsa combo with her husband Juan, never stopped looking for ways forward if not full‑fledged solutions. But once she was reinstated at Jones Street after her stay at Lenox Hill, to which she was reluctant to return anyway, she would never leave.
This was now officially a hospice situation, meaning Medicare would underwrite only palliative as opposed to curative care. Morphine eased the anxiety caused by her difficulty breathing, although it didn’t help her sleep the way one might hope. Joy had support from many volunteers including our occupational therapist daughter Nina as well as teams of hospice professionals. And she was still there. The second time Carola visited, Joy requested that she bring borscht from Little Poland, the restaurant across the street from us, so she could compare it to the Veselka version her younger sister had been bringing over all summer. This was so typical of how engaged she always was that when we left for Oakland we were fairly confident she’d be there when we got back. And she was—but just barely. Jessica believes one reason she hung in there as long as she did is that she wanted to be sure to see Carola again.
So having arrived home from JFK at 10 we ditched our luggage and took another cab crosstown, and what we encountered at Jones Street was wrenching. By nature and principle stalwart, cheerful, and ready to help, Joy was somewhere between angry and wretched.Physically unable to swallow a pill, she complained continually and kept pulling out the irksome oxygen nosepiece that was her only physical hope for psychological relief—diminished oxygen literally causes anxiety. She vociferously rejected requests to eat something although her daughters did finally maneuver her into lying down on her side in the double bed she and Larry had long shared and Gwen managed to insert an anti‑anxiety suppository. One by one her two daughters and her husband lay with her, embracing her from behind when possible, with Larry the most proprietary. Carola and I sat and looked on for 10 or 15 minutes and then offered our quiet farewells. At 8:30 the next morning there was a phone call. Joy had died at 8:15. We were very glad we’d gotten there first.
I’ve discussed terminal agitation with a few knowledgeable contacts since Joy died and the theory I like best is grim and simple. Terminal agitation occurs because in some deaths the body dies in stages and the brain is equipped to know it: you literally experience yourself expiring bit by bit and, understandably, find that upsetting. It’s a personal affront, an insult. For survivors, mere observers, it’s not really the same thing.
Death is always a surprise even when you see it coming. We are all still grieving. Nonetheless, I have cause to close on a more positive note. One of the many reasons Joy’s health was of such concern to all of us was that it appeared she was keeping the 85‑year‑old husband we also love alive. She conversed with him, prepared his food, remembered what he couldn't, and was always physically affectionate. Very distant relatives who’d known each other as children, they’d been married some 60 years and inseparable forever. “How will I live without her?” he asked Carola during her first visit after Joy’s death, when he made little if any show of being eager for company. Carola replied, “We don’t know. We’re waiting for you to show us.”
So when Carola and I decided it was time to visit Jones Street together a week later, I had no idea what to expect. But what I found was a heartening surprise—Larry, always an affable and generous man who devoted a long architectural career to designing low‑income housing that was not only livable but in its thought‑through yet unassuming way beautiful—was pretty much all there, even planning how to arrange the space now that he’d be sleeping alone. We’d feared that like many spouses who lose their better/other halves after half a century he might no longer see why he needed any more life than that. But while certainly mourning, he didn’t seem set on going too far away in the near future, and I thought the world would be better for that—mine certainly would. So I asked Carola if she agreed, and when she did, I asked what she thought the reason was. She pondered this question briefly.
“I think it’s his philosophy of life,” she said.
