Recently, a colleague at my radio station asked me, in the most cursory way, as we were waiting for the coffee to finish brewing, how I was. To my surprise, in a motion as automatic as the reflex of a mussel being poked, my body bent double and I heard myself screaming:
“I WAAAAAAAANT MY FATHERRRRRR TO DIEEEEE!!!”
Startled, and subtly stepping back to put a bit more distance between us, my co-worker asked what I meant.
“What I mean, Rob, is that even if, while howling like a banshee, I tore my 91-year-old father limb from limb with my own hands in the town square, I believe no jury of my peers would convict me. Indeed, if they knew all the facts, I believe any group of sensible, sane individuals would actually roll up their shirtsleeves and pitch in.”
As I hyperventilated over the coffeemaker, scattering Splenda packets and trying to unclaw my curled fingers, I realized it had finally happened: at 49, I had become a Kafka character. I am thinking of “The Judgment,” in which the protagonist’s supposedly old and frail father suddenly kicks off his bedclothes with surprisingly energetic—even girlish—legs and, standing ghoulishly tall in the bed, delivers a speech so horrifying, so unexpected, and so perfectly calculated to destroy his son’s spirit that his son—who until this point has been having a rather pleasant day writing a letter to a friend, amidst a not unpleasant year marked by continuing financial prosperity and a propitious engagement to a well-placed young woman—immediately jumps off a bridge.
The Elder Chronicles
Stories about aging and caretaking at TheAtlantic.com’s Health channel
Clearly, my nonagenarian father and I have what have come to be known as “issues,” which I will enumerate shortly. By way of introduction, however, let us begin by considering A Bittersweet Season, by Jane Gross. A journalist for 29 years at The New York Times and the founder of a Times blog called The New Old Age, Gross is hardly Kafkaesque. An ultra-responsible daughter given to drawing up to-do lists for caregivers and pre-loosening caps on Snapple bottles, Gross undertook the care of her mother in as professional a way as possible. She was on call for emergencies and planned three steps ahead by consulting personally with each medical specialist. Like the typical U.S. family caregiver for an elder (who is, statistics suggest, a woman of about 50), Gross worked full-time, but (atypically) she was unencumbered by spouse or children. She had the help, too, of her child-free brother, a calm, clear-headed sort given to greeting his sister with a quiet, reassuring “The eagle has landed.” What could go wrong?
Plenty. As Gross herself flatly describes it, in her introduction:
In the space of three years … my mother’s ferocious independence gave way to utter reliance on her two adult children. Garden-variety aches and pains became major health problems; halfhearted attention no longer sufficed, and managing her needs from afar became impossible … We were flattened by the enormous demands on our time, energy, and bank accounts; the disruption to our professional and personal lives; the fear that our time in this parallel universe would never end and the guilt for wishing that it would … We knew nothing about Medicaid spend-downs, in-hospital versus out-of-hospital “do not resuscitate” orders, Hoyer lifts, motorized wheelchairs, or assistive devices for people who can neither speak nor type. We knew nothing about “pre-need consultants,” who handle advance payment for the funerals of people who aren’t dead yet, or “feeders,” whose job it is to spoon pureed food into the mouths of men and women who can no longer hold a utensil.
However ghoulish, it is a world we will all soon get to know well, argues Gross: owing to medical advancements, cancer deaths now peak at age 65 and kill off just 20 percent of older Americans, while deaths due to organ failure peak at about 75 and kill off just another 25 percent, so the norm for seniors is becoming a long, drawn-out death after 85, requiring ever-increasing assistance for such simple daily activities as eating, bathing, and moving.
This is currently the case for approximately 40 percent of Americans older than 85, the country’s fastest-growing demographic, which is projected to more than double by 2035, from about 5 million to 11.5 million. And at that point, here comes the next wave—77 million of the youngest Baby Boomers will be turning 70.
Quick back-of-the-envelope calculation, for Baby Boomers currently shepherding the Greatest Generation to their final reward? Hope your aged parents have at least half a million dollars apiece in the bank, because if they are anything like Mama Gross, their care until death will absorb every penny. To which an anxious (let’s say 49-year-old) daughter might respond: But what about long-term-care insurance? In fact, Gross’s own mother had purchased it, and while it paid for some things, the sum was a pittance compared with a final family outlay of several hundred thousand dollars. But how about what everyone says about “spending down” in order to qualify for Medicare, Medicaid, Medi-Cal, or, ahwhich exactly is it?
Unfortunately, those hoping for a kind of Eldercare for Dummies will get no easy answers from A Bittersweet Season. Chides Gross: “Medicaid is a confusing and potentially boring subject, depending on how you feel about numbers and abstruse government policy, but it’s essential for you to understand.” Duly noted—so I read the relevant section several times and … I still don’t understand. All I can tell you is that the Medicaid mess has to do with some leftover historical quirks of the Johnson administration, colliding with today’s much longer life expectancies, colliding with a host of federal and state regulations that intertwine with each other in such a calcified snarl that by contrast—in a notion I never thought I’d utter—public education looks hopeful. Think of the Hoyer lift that can be delivered but never repaired, or the feeder who will not push, or the pusher who will not feed.
But it gets worse. Like an unnaturally iridescent convalescent-home maraschino cherry atop this Sisyphean slag heap of woe, what actually appears to take the greatest toll on caregivers is the sheer emotional burden of this (formless, thankless, seemingly endless) project. For one thing, unresolved family dynamics will probably begin to play out: “Every study I have seen on the subject of adult children as caregivers finds the greatest source of stress, by far, to be not the ailing parent but sibling disagreements,” Gross writes. Further, experts concur, “the daughter track is, by a wide margin, harder than the mommy track, emotionally and practically, because it has no happy ending and such an erratic and unpredictable course.” Gross notes, I think quite rightly, that however put-upon working parents feel (and we do keeningly complain, don’t we—oh the baby-proofing! oh the breast-pumping! oh the day care!), we can at least plan employment breaks around such relative foreseeables as pregnancy, the school year, and holidays. By contrast, ailing seniors trigger crises at random—falls in the bathroom, trips to the emergency room, episodes of wandering and forgetting and getting lost. Wearied at times by the loneliness of the daughter track, Gross writes, in a rare moment of black humor:
I know that at the end of my mother’s life I felt isolated in my plight, especially compared to colleagues being feted with showers and welcomed back to work with oohs and aahs at new baby pictures. I was tempted, out of pure small-mindedness, to put on my desk a photo of my mother, slumped in her wheelchair.
Those seeking a more hopeful take on this bittersweet season might turn, for momentary comparison, to Passages in Caregiving, by Gail Sheehy. Reading Sheehy is always a boost—even when she’s rewriting some Passage she predicted 10 or 20 or 30 years ago, as is necessarily (and, given our ever-increasing life spans, probably will continue to be necessarily) the case. From her intro (as swingingly nostalgic—isn’t it, almost?—as Burt Bacharach):
In my books and speeches since 1995, when I published New Passages [the first update of the original Passages], I keep predicting liberation ahead—the advent of a Second Adulthood, starting in one’s midforties and fifties. At that proud age, having checked off most “shoulds,” people generally feel a new sense of mastery. Haven’t you done your best to please your parents, your mentor, your boss, and your mate, and now it’s time for you? The children are making test flights on their way to piloting solo. Your parents have become giddy globe-trotters, piling up frequent-flier miles and e-mailing playful photos of themselves riding camels … Now you can finally earn that degree, start your own business, run for office, master another language, invent something, or write that book you keep mulling.
Ominous new paragraph—to reflect tire-screeching 21st-century update:
Then you get The Call.
In Sheehy’s case, The Call was a cancer diagnosis for her husband, Clay Felker, which kicked off an almost two-decade period of medical battles before his death (which was actually not, in the end, from cancer). Although Sheehy offers her book as an umbrella guide for all caregivers, weaving her personal experience together with a demographically wide range of case studies, it strikes this caregiver as less than universal. For one thing—and in fact this is a tribute to how engagingly Sheehy tells her story—even with a tube in his stomach (for which sympathetic chefs blended gourmet food at Paris bistros, whereupon he continued to charm dinner guests as usual in his handsome navy-blue blazer), Clay Felker, on the page anyway, is still pretty great company. And then, to further vanquish the blues, Sheehy and Felker rented a houseboat, spent the summer in France … (How is it that, no matter what, Boomers always seem to be having more fun?)
And while there is some aesthetic appeal to Sheehy’s mandala-like formulation of the caregiver’s journey being not a straight path but a labyrinth (whose eight turnings are Shock and Mobilization, the New Normal, Boomerang, Playing God, “I Can’t Do This Anymore!,” Coming Back, the In-Between Stage, and the Long Good-bye), this taxonomy feels more descriptive than helpful. Also, her take on what one learns when caring for one’s failing loved one is, if not quite a Hallmark card, certainly the best possible case:
It opens up the greatest possibilities for true intimacy and reconnection at the deepest level. The sharing of strengths and vulnerabilities, without shame, fosters love. And for some caregivers, this role offers a chance in Second Adulthood to compose a more tender sequel to the troubled family drama of our First Adulthood. We can become better than our younger selves.
Jane Gross also believes spiritual growth is possible, but her take, predictably, is far less rosy, even verging on Old Testament:
Here we are, not just with a herculean job but with a front-row seat for this long, slow dying. We want to do all we realistically can to ease the suffering, smooth the passing, of our loved ones. But we also have the opportunity to watch what happens to our parents, listen to what they have to say to us, and use that information to look squarely at our own mortality and prepare as best we can for the end of our own lives.
For herself, insists Gross: “I can tell you now that it was worth every dreadful minute, a transformative experience.” And the inspiring lesson? Here it is, as expressed in a sere opening quotation by May Sarton: “I have seen in you what courage can be when there is no hope.”
Clearly, various ruminations on the meaning of the caregiver’s “journey” will continue, as ever more literature is added to the caregiving genre, as ever more of us spend ever more of our days belaying loved ones in Hoyer lifts like stricken beef cattle. That said, while I do carry a datebook festooned with soothing nature photography and the proverbs of the Buddhist nun Pema Chödrön (the sort of curious artifact 50-ish women like myself receive as Christmas gifts, along with very tiny—to reduce calories—lavender-and-sea-salt-infused gourmet chocolates), I myself have yet to see any pitch for the spiritual benefit of this grim half-million-dollar odyssey that is remotely inviting. To quote Amy Winehouse, who didn’t want to go to rehab: No, no, no!
No … No … No. What I propose instead is seeking comfort in what I like to call, borrowing in part from Kafka’s German, Elderschadenfreude. On the one hand, sure, here we stand around the office coffeemaker in middle age, mixing flax into our Greek yogurt and sharing more and more tales about our elderly parents, tales that are dull (“Mom slipped in the shower—at first she said it was nothing”), slow-moving (“And then I took her to the foot doctor, but then, right there in the parking lot, she insisted she had to go to the bathroom—but the door is on the north side while we were on the south—”), and in the end, well, depressingly predictable (we already know which colleges our wards are getting into—NONE). On the other hand, I believe it is by enduring this very suffering and tedium that one can eventually tease out a certain dark, autumnal, delightfully-bitter-as-Fernet-Branca enjoyment, best described by some dense and complicated noun-ending German word.
Elderschadenfreude is the subtle frisson of the horror tale that always begins so simply (“Mom slipped in the shower—at first she said it was nothing”) but makes listeners raise eyebrows, nod knowingly, begin microwaving popcorn. It is the secret pleasure of hearing about aging parents that are even more impossible than yours. Prepare to enjoy.
My father’s old age began so well. Back in his 70s, to prepare for his sunset years, this Chinese widower had taken the precaution of procuring (after some stunning misfires) his retirement plan: an obedient Chinese-immigrant wife, almost 20 years younger than himself, who, in exchange for citizenship, would—unlike American women—accept the distinctly nonfeminist role of cutting up his fruit and massaging his bunions. In addition to doing all that, said Chinese wife, Alice, helped my dad run the informal Craigslist-peopled boarding house he had turned our family home into, for which her reward would be a generous inheritance upon his death, and the right to live in the house until hers. It is a measure of my dad’s frugality that he didn’t even buy health insurance for Alice until she turned 65—he rolled the statistical dice against the premiums, and won! With $2,000 a month from renters, on top of a Social Security check of $1,500, he and Alice were actually making money. What with their habit of taking buses everywhere and a shared love of Dumpster diving, they could star in their own reality show about thrift.
This is not to say my father has been completely “well.” After age 78, if you asked him “How are you?,” he would exclaim: “I’m dying!” At his 80th-birthday party, when he tremulously lifted his centimeter of red wine while watching my girlfriends dance, I mourned his visible frailty. At 82, he was passing out on bus benches, hitting his head, causing his doctors to insist on a pacemaker (which he refused). By 85, battling Parkinson’s, he was still hobbling down to the beach to attempt rickety calisthenics and swimming, but “he’s barely swimming in those two feet of water,” my older sister worried. “It’s more like falling.” By 89, he was so slowed, like a clock winding down, that, never mind going to the beach, one morning he couldn’t even get out of bed.
That was when he called me, in fear and confusion, for help. A pulse-pounding hourlong drive later, arriving at his bedside, I found to my panic that I could not rouse him. He lay in that waxy, inert, folded-up pose that looks unmistakably like death (I had seen it when my mother died, of early Alzheimer’s, at 69). “This is it—it’s really it—Papa’s dead,” I wept over the phone, long-distance, to my sister. And I remember, as the dust motes danced in the familiar golden light of our family home, how my sister and I found ourselves spontaneously, tumblingly observing to each other how we were sad … and yet oddly at peace.
Yes, my history with this man has been checkered: in my childhood, he had been cruelly cheap (no Christmas, no heat); in my teens, he had been unforgivably mean to my mother; in my 20s, I rebelled and fled; in my 30s, I softened and we became wry friends—why not, he couldn’t harm me now; in my 40s, sensing that these were the last days of a fading elder, the memories of whom I would reflect on with increasing nostalgia, the door opened for real affection, even a kind of gratitude. After all, I had benefited professionally from using him as fodder for my writing (as he had benefited financially for years by forging my signature so I ended up paying his taxes—ah, the great circle of life).
In short, there was real grief now at seeing my father go, but I was a big girl—actually, a middle-aged woman, with some 1,000 hours of therapy behind me—and, chin up, I would get through it. Unlike in the case of my mother, who had left too early, my business here was done. I had successfully completed my Kübler-Ross stages.
The conundrum that morning in the dining room (where my father’s bed was), however, was that although my father wasn’t rouseable, he wasn’t actually dead. (He has a lizard-like resting pulse of 36, so even in his waking state, he’s sort of like the undead.) I called the Malibu paramedics, who carted him to the emergency room and stuck an IV in. An hour later, the surprisingly benign diagnosis? Simple dehydration.
With a sudden angry snort, my father woke up. I won’t say I wish I had hit him over the head with a frying pan to finish the job when it seemed we were so, so close. But I will say that when my dad woke up that day, my problems really began. Because what this episode made clear was that, while nothing was wrong with my dad, although he was 89—89!—something was wrong with Alice, who was supposed to be taking care of him. Her penchant for gibbering Chinese was not, as we’d imagined, a symptom of her English skills’ plateauing after 15 years in America, but of the early or middle stages of dementia. This, I hadn’t expected, because, as I remind you, she is much younger than my father. Alice’s age is … drumroll … 72.
So now, aside from neglecting my elderly father, the formerly mild-mannered Alice is starting to disturb the tenants: waving butcher knives at them, hurling their things into the street. (What a fun life they’re having—my father believes some of the more sturdy renters can pitch in and “help shower” him. Best to think twice before renting a room off Craigslist!) Alice is increasingly found wandering at 2 a.m. on freeways in places like Torrance (50 miles away), and is ever more routinely brought home in the dead of night by various police officers and firemen (your tax dollars at work!). And in contrast to her formerly frugal ways, Alice no longer understands money. At one point, my father called the police because she was hitting him—not to have her arrested but, as my dad says, just to “scare” her. To evade capture, she ran away with a duffel bag stuffed with their passports, marriage certificate, immigration papers, and two small, tightly packed envelopes, one with exactly 13 crisp $1 bills inside it and another with a Keystone Kops–type mélange of Chinese money, Turkish money, and … as I said, upon discovery, to my sister: “I didn’t know Bill Nye the Science Guy had his own currency!”
When I gave Alice the bag (returned by the police), she accused me of stealing $2,000 from it. Meanwhile, forensic analysis reveals she had withdrawn $13,000, gone to a bank in Chinatown, and purchased a useless universal life-insurance policy, an event she cannot recall. My father does not want Alice to move to assisted living, however, because he enjoys her cooking. So the solution for Alice is a full-time Mandarin-speaking female companion. At $5,000 a month, this service is a relative bargain if it keeps Alice from withdrawing, and flinging to the winds, her next $50,000. (And who knows where all these mysterious accounts are? I’m trying to find out, I’m trying!) Meanwhile, armed with his own capable full-time Filipino male nurse (another $5,000 a month), my father has roared back with formidable energy. As long as he’s hydrated, it appears that no bacterium can fell him—remember, he has been eating out of Dumpsters (we’re talking expired sushi) for several decades already. (Who knows if he hasn’t morphed into another life form, possibly amphibian?) Which is to say, now I have a wheelchair-bound but extremely active 91-year-old who greatly enjoys getting bathed and diapered and fed ice cream and crashing UCLA science lectures and, oh, by the way—every day he calls me now: he wants SEX. He proudly needs only 1/16th of a Viagra pill for SEX. Because Alice is no longer complying (she is unfortunately not quite that crazy), and because I have not—yet?—caved (although if one Googles this issue, one will find to one’s horror the phrase healing hands!), my father has started to proposition Alice’s lady nurse, trying to grab her breasts, begging her to touch him. Which he can’t do himself, as he can barely clasp his hand around a spoon.
What would Gail Sheehy call this particular new Passage, aside from, peppily, “The New Normal”? Outdoing the “giddy globe-trotters” in Sheehy’s midlife Boomer-topia, my father would park his wheelchair on top of the camel, then get pitched headfirst from the camel, then probably try to molest the camel. Eternally leaping up, like a ghoul, he is the über-Kafka father.
But there’s more. My father’s care demands an ever-changing flotilla of immigrant caregivers, of whom the chief one is Thomas. Because my father is so difficult, it’s not atypical for new caregivers to quit before noon. The miraculously tolerant Thomas is the only nurse who has stuck with my father, which means that my sister, brother, and I basically work for Thomas. We’ve co-signed on an apartment for him and his wife and four children, who just emigrated from the Philippines; we’ve fixed up a beater car for him (which I’ve spent many a weekday smogging, re-smogging, insuring, handicapped-plating). We do all this because Thomas does an excellent job, always trying to raise the standard of my dad’s care. Which is a good thing. Or is it?
Thomas is concerned about my dad’s regularity. The cranberry pills and stool softeners I regularly deliver from Costco have worked to a point, yes, but now Thomas has hit upon something better: milk of magnesia. Problem is, the product is so effective that when my father is given it before bed, although he has finally consented to wearing an adult diaper at night, within four hours he is at capacity and begins fouling his sheets. Hence, Thomas has started finishing his 10-hour day by sleeping in my father’s room at night, for which, of course, he must be given a raise, to $6,500 a month.
Thomas is optimistic. He ends conversations about the overflowing diapers with this cheerful reassurance: “I will get your Papa to 100!”
Oh my God—how could he say such a horrible thing? I am hyperventilating again. Okay. Never mind the question of whether, given that they have total freedom and no responsibilities, we are indulging our elders in the same way my generation has been famously indulging our overly entitled children. Never mind the question of whether there is a reasonable point at which parents lose their rights, and for the good of society we get to lock them up and medicate them.
The question that really haunts me, and that I feel I must raise now, is: At these prices, exactly how much time do I have to spend listening to stories about my dad defecating?
I rant to myself: He is taking everything! He is taking all the money. He’s taken years of my life (sitting in doctors’ offices, in pharmacies, in waiting rooms). With his horrid, selfish, grotesque behavior, he’s chewed through every shred of my sentimental affection for him. He’s taken the serenity I fought for—and won—in 1,000 hours of therapy centered on my family. In fact, he’s destroyed my belief in “family” as a thing that buoys one up. Quite the opposite: family is like the piano around Holly Hunter’s ankle, dragging me implacably down.
I have to ensure Hilton-level care for my barely Motel 6 father, the giant baby, as well as for his caregiver, the big-baby nurse, all caught up with the high-pitched drama of feeding and diapering and massaging. That’s right: my family is throwing all our money away on powdering our 91-year-old dad’s giant-baby ass, leaving nothing for my sweet little daughters, with their thoughts of unicorns and poetry and dance, my helpless little daughters, who, in the end, represent me! In short, on top of everything else he has taken from me, he has taken away my entire sense of self, because at age almost-50, it appears that I too have become a squalling baby!!!
The other day, my writer friend Laura was doing her own woeful monologue—and how they all just continue, like leaves falling—about her dad.
“He has learned nothing in 78 years. He has no wisdom. He has no soul. He insults me. He ignores his grandchildren. How much longer do I need to keep having a relationship with him?”
We were walking in the hills above Griffith Park, which turn into the grassy slopes of Forest Lawn, which put me in mind of the ending of one of the best memoirs I have ever read—and, come to think of it, perhaps the only book one will ever need—about difficult parents, Bernard Cooper’s The Bill From My Father. The title comes from the day Cooper received a bill from his lawyer father, typed on his customary onionskin paper, demanding immediate reimbursement for parenting outlays (including an entire childhood’s worth of groceries and clothing) in the amount of $2 million. Cooper Sr. escalated the pain, upon his other sons’ deaths, by not just sending their widows bills but filing actual lawsuits against them.
Still, Cooper continues to have an on-again, off-again relationship with Cooper the Elder (whose history with his sons can be summed up by the progression of painted signs on the front of his law-office door, as telling as a piece of concrete poetry: COOPER; COOPER & COOPER; COOPER, COOPER & COOPER; COOPER, COOPER, COOPER & COOPER; COOPER, COOPER & COOPER; COOPER & COOPER; COOPER). Their relationship eventually drew the interest of a publisher—did Cooper want to write a book about his father? As Cooper recalls:
It would be foolish to refuse her offer because … Well, because money was involved, but also because the rest of my family was gone forever and Dad was all I had left, though I wasn’t sure what constituted “all.” Or “Dad” for that matter.
He quotes from John Cheever’s short story “Reunion”: “‘My father,’ thinks the son, ‘was my future and my doom.’” The memoir concludes with a wonderful Forest Lawn cemetery scene (his father’s punchy epitaph: YOU FINALLY GOT ME).
I almost don’t know what I envy Bernard Cooper for more—his incomparable literary genius or the fact that his father is dead. (Anti-Elderschadenfreude.)
The paradox is, I can’t miss the good things about my father while he is alive, but I will of course miss him … when he is dead. By the same token—and perhaps this is the curious blessing—if my mother were alive today (what would she be, 84?), she would be driving me insane!!!
But then, inevitably, comes (at least in my Pema Chödrön calendar) yet another day. And indeed, inspired by my Buddhist stationery, what I decide I will let go of today is any of the previous ideas I had about future planning—the college tuitions, paying off the house, putting together some kind of retirement …
Then again, in the new America, shouldn’t the wealth be re-equalized from generation to generation? Is it not somewhat fitting that the Loh family’s nest egg should be used to put not our children but Thomas’s through college, as Andrew Carnegie advocated? (“I will get your Papa to 100!”) Is that really the worst use of this money? Indeed, I muse slyly, perhaps, unlike my own Western daughters, jazz shoes and drawing pads (how useless!) spilling out of their bags, Thomas’s children will actually buckle down and get real majors, leading to real jobs—doctor, engineer, or, most lucrative of all … geriatric nurse.
So I feel a little calmer today, as I deliver my raft of pills. And I find it is a rare calm day at my father’s house as well. The various triaging schemes are holding. Thomas has the house smelling soapy, white sheets cover sagging couches, vases hold artificial flowers, medications are arranged on various bureaus in proud and almost spectacular displays. For today, Thomas’s beater car runs. For today, Alice is medicated, and therefore pleasant. She serves a mysterious bell-pepper dish that—aside from being wildly spicy—is edible. My father’s hair has never been more poofy—or black. He too is vaguely fragrant. Could be his lucky day. SEX.
I have to acknowledge, too, that in traditional China, with its notions of filial responsibility, my elders would be living with me in my home, or I in theirs. So the beautiful oh-so-Western thing is that, for today, I can drive away. And as I drive down PCH—dipping celery into Greek yogurt sprinkled with flax, dropping it all over my sweatpants—I realize that because things are not actually terrible (no cops, no paramedics, no $13,000 bank withdrawals), today qualifies as a fabulous day.
I can no longer think of my dad as my “father.” But I recognize in him something as familiar to me as myself. To the end, stubborn, babyish, life-loving, he doesn’t want to go to rehab, no, no, no.