One afternoon, Nasser drove me to see his brother’s widow in Souq al-Jumaa, a middle-class neighborhood of Tripoli. Omar’s daughter opened the door, a pretty ten-year-old with lots of orange and pink bracelets on her wrists. She greeted me in English and led us to a Western-style living room with a white shag carpet. Her name was Abrar, and her four-year-old sister, Ebaa, skipped across the room with us to the couch, where both girls sat beside me. After a minute their mother, Lubna, came downstairs and introduced herself. She launched right into a narrative about the family, their years living in Newcastle and Liverpool, their return to Libya and then her husband’s disappearance. “We were so scared all during that time,” she said. “Even now when I hear an airplane I am frightened.” As Lubna spoke, her younger daughter toyed with my beard and stole my pen and notebook. Finally she cuddled up next to me, clutching my arm and pressing her head into my shoulder. “She has been like this ever since her father died,” Lubna said. Abrar, the older girl, ran off to find a journal she kept about her father’s death. It was a remarkable document, an account written in English on lined paper in a child’s straightforward prose. “Then we got a phone call saying my daddy died, and my mama banged her head against the wall and screamed, and I cried,” she wrote of the day they found out. This was followed by her descriptions of a series of dreams she had about her father. In all of them, he reassured her that he was in Paradise, and in two dreams he offered to introduce her to the Prophet Muhammad.
At one point Lubna mentioned that she had urged her husband to take them all to Tunisia, where it was safer. Abrar piped up, speaking in the same direct, poised tone as her writing: “We said, ‘Take us out of Libya.’ He said: ‘Never, the hospital needs me. The kids need me. I will never leave. I will die in it.’”
Throughout our visit, Nasser quietly sat on the couch, now and then offering toys to the younger girl. On our way out, the girls offered to show us their father’s home office. It was a small room, sparsely decorated, with his British medical degrees framed on the wall, and two big drawers full of toys for the girls. “This is what kills me,” Nasser said. “All men love their children, but with him, it was even more.”
We walked through the gathering dusk to the car, and I asked Nasser about his future. What would he do once the brigade no longer existed? He wants to become a police investigator, he said, but for a real department. Abrar got into the back seat, clutching a stuffed bear. Her uncle was taking her to the stationery store to buy school supplies. We drove toward Martyrs’ Square, the new name given to the plaza where Qaddafi once urged Libyans to fight to the last man. Now there wasn’t a single image of his face in the streets, and rebels had scrawled “Change the color” on any wall that was painted his signature green. There was a chill in the air, and I heard a single shot ring out over the Mediterranean as we wove through the traffic.
“I didn’t always get along with my brother,” Nasser said. “But only because he wanted me to be better.”
New York
FINALIST—ESSAYS AND CRITICISM
There are only twenty-four National Magazine Awards. Some honor the kind of long-form journalism collected in this anthology; others recognize editorial excellence in print categories (such as Design and Photography) or in digital media (Multimedia and Video). One award, simply called Magazine of the Year, is given to publications that do it all. This year New York won that award, and Michael Wolff’s essay “A Life Worth Ending” is one reason why. Wolff is well known for his media reporting, but in this piece, which the National Magazine Award judges called “brutally honest,” he describes his mother’s final illness and his own struggle with a health-care system that prolongs life even as it encourages human folly. Wolff’s mother, Van, died four months after this piece was published.
Michael Wolff
A Life Worth Ending
On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I’d save if I bought it now, before the rates were set to precipitously rise.
For $5,000 per year, I’d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day—a fair idea of where heath-care costs are going.
I am, as my insurance man pointed out, a “sweet spot” candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties—in my experience almost everybody—I have a parent in an advanced stage of terminal breakdown.
It’s what my peers talk about: our parents’ horror show. From the outside—at the office, restaurants, cocktail parties—we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.
I didn’t need to be schooled in the realities of long-term care: The costs for my mother, who is eighty-six and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I’m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators—and please fax them, don’t e-mail.) My three children deserve as much.
And yet, on the verge of writing the check (that is, the first LTC check), I backed up.
We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.
And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?
“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws.
In 1990, there were slightly more than 3 million Americans over the age of eighty-five. Now there are almost 6 million. By 2050 there will be 19 million—approaching 5 percent of the population. There are various ways to look at this. If you are responsible for governmental budgets, it’s a knotty policy issue. If you are in marketing, it suggests new opportunities (and not just Depends). If you are my age, it seems amazingly optimistic. Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.
This is not anomalous; this is the norm.
The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segm
ent peculiarly resistant to death’s appointment—though far, far, far from healthy.
Sometimes we comb my mother’s hair in silly dos, or photograph her in funny hats—a gallows but helpful humor: Contrary to the comedian’s maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life—and possibly much more.
Mike Wallace, that indefatigable network newsman, died last month in a burst of stories about his accomplishments and character. I focused, though, on a lesser element in the Times obituary, that traditional wave-away line: “He had been ill for several years.”
“What does that mean?” I tweeted the young reporter whose byline was on the obit. Someone else responded that it meant Wallace was old. Duh! But then I was pointed to a Washington Post story mentioning dementia. The Times shortly provided an update: Wallace had had bypass surgery four years ago and had been at a facility in Connecticut ever since.
This is not just a drawn-out, stoic, and heroic long good-bye. This is human carnage. Seventy percent of those older than eighty have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.
From a young and healthy perspective, we tend to look at dementia as merely Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.
There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.
Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.
Make no mistake, the purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.
I hesitate to give my mother a personality here. It is the argument I have with myself every day—she is not who she was; do not force her to endure because of what she once was. Do not sentimentalize. And yet … that’s the bind: She remains my mother.
She graduated from high school in 1942 and went to work for the Paterson Evening News, a daily newspaper in New Jersey. In a newsroom with many of its men off to war, Marguerite Vander Werf—nicknamed “Van” in the newsroom and forevermore—shortly became the paper’s military reporter. Her job was to keep track of the local casualties. At eighteen, a lanky ninety-five pounds in bobby socks, my mother would often show up at a soldier’s parent’s front door before the War Department’s telegraph and have to tell these souls their son was dead. Many decades later, she would still go pensive at this memory. She married my father, Lew Wolff, an adman, and left the paper after eleven years to have me—then my sister, Nancy, and brother, David. She did freelance journalism and part-time PR work (publicity, it was called then). She was a restless and compelling personality who became a civic power in our town, elected to the board of education and taking charge of the public library, organizing and raising the money for its new building and expansion. She was the Pied Piper, the charismatic mom, a talker of great wit and passion—holding the attention of children and dinner-party drunks alike.
My father, whose ad agency had wide swings of fortune, died, suddenly, in that old-fashioned way, of a heart attack at sixty-three, during one of the downswings. My mother was fifty-eight—the age I am now—and left with small resources. She applied her charm and guile to a breathtaking reinvention and personal economic revival, becoming a marketing executive at first one and then another pharmaceutical company. At seventy-two, headed to retirement but still restless, she capped off her career as the marketing head of an online-game company.
For twenty-five years, she lived in an apartment building in Ridgewood, New Jersey, in a sitcom mode of sociability and gossip. Once a week, every week, she drove into Manhattan to cook dinner for my family and help my three children with their homework—I am not sure how I would have managed my life and raised children without her.
This is the woman, or what is left of this woman, who now resides in a studio apartment in one of those new boxy buildings that dot the Upper West Side—a kind of pre-coffin, if you will. It is even, thanks to my sister’s diligence, my mother’s LTC insurance and savings, and the contributions of my two siblings and me, what we might think of as an ideal place to be in her condition. It is a spacious room with a large picture window that, from the ninth floor and my mother’s bed, has an uninterrupted view across town. The light pours in. The weather performs. The seasons change. A painting from 1960 by March Avery, from the collection she and my father assembled—an Adirondack chair facing a blue sea—hangs in front of her. Below the painting is the flat-screen TV where she watches cooking shows with a strange intensity. She is attended 24/7 by two daily shifts of devoted caregivers.
It is peaceful and serene.
Except for my mother’s disquiet. She stares in mute reprimand. Her bewilderment and resignation somehow don’t mitigate her anger. She often tries to talk—desperate guttural pleas. She strains for cognition and, shockingly, sometimes bursts forward, reaching it—“Nice suit,” she said to me, out of the blue, a few months ago—before falling back.
That is the thing that you begin to terrifyingly appreciate: Dementia is not absence; it is not a nonstate; it actually could be a condition of more rather than less feeling, one that, with its lack of clarity and logic, must be a kind of constant nightmare.
“Old age,” says one of Philip Roth’s protagonists, “isn’t a battle, it’s a massacre.” I’d add, it’s a holocaust. Circumstances have conspired to rob the human person—a mass of humanity—of all hope and dignity and comfort.
When my mother’s diaper is changed she makes noises of harrowing despair—for a time, before she lost all language, you could if you concentrated make out what she was saying, repeated over and over and over again: “It’s a violation. It’s a violation. It’s a violation.”
The numbing thing is that you see this all coming—you see it, but purposely and stubbornly don’t see it.
As it started with my mother, it was already advanced for a college friend and close colleague. As an only child, he had less room to hide. I looked on with mild concern at his helplessness. I kept thinking my situation could never get as bad as his—he spoke actually, not comically, of murder. But we all catch up with each other. All train wrecks occur on a time line.
For my mother, it began with her feet. Her complaint, which no doctor could put a useful name to or offer much respite from, was that she felt the skin on her feet was too tight. One evening, almost three years ago, getting into the shower, she caught her lagging foot on the rail of the shower door and went down into the tub. She lay there, shivering in the tepid water until morning, when her neighbor became alarmed. There is a precept here, which no doctor quite spells out: Once it has begun, it has begun; decline follows decline; incident precedes incident. Here’s the medical language: “A decrement in capacity occurs.”
But we’ll cope, of course. My mother’s shower was equipped with special chairs (the furniture of aging is its own horrid story), grab-bars and easy-reach phones installed and I-can’t-get-up beepers subscribed to. She actually learned how to fall (not falling not being an option). At the least sign of a tumble, she would sink almost elegantly to the ground, and then, not being able to get up, she’d beep the police, the affable police, who would come and hoist her to her feet, whereupon she’d fix them coffee and all would be sort of well.
And then a holiday—those unfailing barometers of family health. Thanksgiving 2009 was already a weird one. My wife and I had split earlier in the year. The woman I was seeing—and had moved in with—was coming. My children were boycotting. It was my mother who was trying to be the strong and constant pillar. She insisted she could
do the job. Her neighbor—a man who had been squiring her around for many years—would load the turkey, too heavy for my mother to lift, into the oven. My sister and I would arrive before the handful of other guests to do the finishes. All was in order when we got there—the potatoes boiled and ready to be mashed in one pot, the carrots roasted, the onion custard baked—all in order except that my mother had done these preparations a week before. Every pot yielded an alarming odor. What was worse was her lack of comprehension—and lack of alarm.
Plans, obviously, had to begin in earnest. Her three children—my sister and I in New York, my brother, a software consultant, in Maui—conferred. An independent life goes into receivership—and you think, How did we miss all the failing indicators? My mother, like a rogue accountant, had been hiding much of the evidence: She could no longer tell time, nor count, nor keep track of dates.
Anyway, this is what assisted living is for, no?
We would move her to Manhattan, and, we managed to convince her and ourselves, she’d begin a great new adventure.
She was game—and relieved. The place, the Atria on West Eighty-Sixth Street, was just a few blocks from where my sister, an artist, lives and works. A national chain of residences for the elderly, the Atria is more a real-estate business than a health-care enterprise, providing, at hefty cost—the apartments are in the $8,000-a-month range—quite a pleasant one-bedroom apartment in a prewar building, full of amenities (terraces and hairdressers) and gradations of assistance. But it is important to understand—and there is no reason why one would—that assistance in an assisted-living facility, even as you increase it and pay more for it, is really not much more than kind words and attendance, opened doors, a bit of laundry, and your medications delivered to you. If there is a need for real assistance of almost any kind that involves any sort of calibration of concern, of dealing with the real complications and existential issues of aging people, then 911 is invariably called. This is quite a brilliant business model: All responsibility and liability is posthaste shifted to public emergency services and the health-care system.
Best American Magazine Writing 2013 Page 22
