Dignity Is Optional – & Unaffordable for Many

The Dilemma of Aging in a Broken Healthcare System

bart plantenga

“You have heard . . . of those tiny fish in the rivers of Brazil that attack the unwary swimmer

by thousands and with swift little nibbles clean him up in a few minutes, leaving only

an immaculate skeleton? Well, that’s what their organization is.”

—Albert Camus, “The Heart of Things”

Just days before my mother, Christina, died, she turned to me, had very few words left and, unbeknownst to us, actually very few days left as well, but still managed to ask: “Hoe zie ik eruit Bart, OK?” (How do I look? OK?) What could I say other than “fine,” although she looked like a concentration camp survivor.

Meanwhile, hospital staff breezed through her room, offering cheery bromides—she’s lovely, she’ll be fine, etc. —but no updates, no diagnoses, no insights into her chances. I wanted a serious discussion about general disorientation, and paranoia, her gradual retreat from English, back to her native Dutch (staff never understood the half of what she said, but acted as if they did) or her vivid, technicolor, apocalyptic hallucinations. Granted, hallucinations don’t prove heaven any more than a leaky showerhead proves it’s raining. But she found these hallucinations intoxicating, comforting, ennobling—and was that OK? But all I got was these weak, embarrassed wince-grins that clearly signaled: let me just pass through unhindered please . . .

“I love her devilish smile,” a nurse raved as she scurried past.

A Coke, which she never drinks, on her tray offered perhaps as miraculous pick-me-up . . . Two years ago, still feisty, she would have never accepted the shoddy treatment that I will soon describe. I missed her spirited cantankerousness as she grew increasingly frustrated with her confusing surroundings. Dementia left her docile with an almost Buddhist-like detachment from the remaining distractions of life.

I showed her a photo from 1948, one of a handful I’d brought along—how beautiful she once was, mischievous smile, clear doe-eyed gaze, a bit of hope floating like a scented cloud all around her. She said nothing, just pecked at the photo with her pointing finger as if to say, “A-Ha, you see.” And when I mentioned her granddaughter, Paloma, showed her a photo, she pecked at it with her forefinger as if to say: “I know very well who she is.”

But more important were the men in black she saw tromping around on the roof of the building across the way; her chair, her eyes, her total attention all fixed on their movements. Kept pointing: “Dere are men on duh roof.”

I looked real hard and all I saw were shadows cast by rooftop ventilation and storage features. She was seeing what I wasn’t and that was concerning. “What are dey doing dere?” I eventually tugged the curtain shut like a stern parent trying to redirect a kid’s focus away from the Game Boy. I mentioned the weather, antics that used to make us laugh, pointed to her hairstyle in that photo—“nice.”

For years she’d been more dreaded than pitiable, more intolerable than helpless. But the irritable, random swearing and swinging of her cane at my brother’s or my head were all gone, yes, the internal bronco had been broken, frailty left her humble, showing gratitude for anything anyone did for her. To be honest, I was relieved. This was the ironic luck of dementia insulating her—oblivion as a kind of amniotic fluid—from the surrounding surface anxieties triggered by a profit-driven, broken-down healthcare system. Ignorance is bliss, although, maybe I was wrong, maybe she was just unable to express her anxieties anymore. Her docility now fostered pity, prayers, unconditional cuddling, which may have more to do with the absolution of us survivors than any compassion for the patient.

She was, however, still complaining about people, my brother’s reckless driving, her Lancaster neighbors supposedly stealing garden tools, her nursing home housemates stealing money, broaches, candy, photos—you name it. But I’d learned that paranoia was a symptom of dementia and cannot be UNlearned.      

I was sitting there, staring at my mother in an upstate New York hospital bed, regretting not having been more understanding back when she could have appreciated some niceness only two years earlier. After all, it wasn’t her fault—I realized way too late. In retrospect, her life ended up a bit of a dumpster fire: war, famine, death, displacement, teen years and art dreams snuffed by the realities of WWII, financial precarity, alienation—always a stranger in a strange land, my brother, younger by four years—an alcoholic with Parkinson’s AND dementia. And, one summer day, my father collapsing in the backyard, among his prize hybrid lilies, succumbing to injuries incurred in a head-on collision years earlier. Or, more accurately, dying of his own volition when he secretly decided to stop taking his meds weeks earlier to perhaps put an end to his suffering. The idea of him wanting to end his life was incomprehensible to Christina (We later found the evidence in a drawer in his den—some one hundred pills spit out into a plastic container and saved for some reason.) 

I also regretted that—despite pleading, petitioning, calling, emailing, and reasoning—I was unable to prevent her nursing home with the romantic-sounding name from unceremoniously dumping her in this hospital under the pretext that she had an untreatable urinary tract infection, claiming they could no longer provide the necessary level of care. So the hospital had admitted her “under observation.” I knew nothing about this innocuous-sounding status—and no one came forward to explain. But, you watch, I’ll discover later, after many questions and some googling, that this “under observation” status can have devastating effects on one’s mood and finances.

“Under observation,” means patients not formally “admitted” to a hospital but not quite ready to go “home” either—neither inpatient nor outpatient, but rather some purgatory designation increasingly employed by short-staffed hospitals, mandated by Medicare to save billions, with Medicare actually hiring private third-party auditing firms to root out fraud and overpayment, with these bloodhounds earning a 10 percent bounty on fines collected.

The usual “observation” stay, I read later, is about three to four nights during which doctors determine whether a patient should be admitted or kept on as an inpatient or discharged. Ultimately, they determined that Christina never had this UTI after all, with the UTI ruse serving as a common pretext used by nursing homes to dump “difficult” patients with dementia.

The entire system proved confusing. The promised doctor never passed by, the assumed assessment, diagnosis, or referral never happened, while overworked nurses nonchalantly reassured me Christina was doing great. The hospital, following the law, tried compelling her nursing home to take her back, but they refused. Hospitals, I heard, are quite used to this kind of elderly dumping, and so the hospital effectively became Christina’s homeless shelter—albeit an extravagant one. Here she could lie in an amnesia-defined nirvana, all while being charged a daily rate of . . . oh, as an outpatient you’re not covered by Medicare? . . .

Apparently no one could properly demystify the care-to-profit-margin algorithm as far as out-of-pocket medical costs, copays, or post-discharge-rehab costs. And so there she lay—homeless, stateless, neglected by the system—in direct contradiction to what at the time I believed were Medicare’s own guidelines. On the internet at the friend’s house where I was staying I read: Patient Rights Most Often Violated: understaffing, failing to provide quality care, and failing to educate patients and family to help make informed decisions…

Imagine me—I seriously did—propping her up in the front seat of my rental car and just driving from nursing home to nursing home, me, like some vacuum cleaner salesman, presenting mom on her wobbly frame, her sad eyes as sales pitch, begging anyone to liberate themselves from bureaucratic cynicism, overworked indifference, and to please-please take my mother—pleading as viable strategy?

A year of haggling, filling in forms, repeating my woe-is-me stories over and over, had shown little progress regarding Christina’s status. Any show of urgency or anxiety on my part was often perceived as grumpy aggression aimed at harried staff with countless phone conversations peppered with gruff “I don’t knows” . . . What was worse? They not knowing or their being too swamped to properly explain? Meanwhile, nursing home reps were hesitant to admit her with no clear reassurance of Medicaid coverage. Not heaven, not hell, but some Kafka-designed bureaucratic blackhole limbo. 

The New York State patient rights ombudsman indignantly declared that all this was not unusual, quite unacceptable—and illegal. But her advocacy efforts had little effect, although it did gladden my heart to think someone was actually listening.

Finally, going into day four, despite Christina having Medicare Medical Parts A and B, hospital staff did warn me that out-of-pocket expenses would likely be $1200 per day—even more—but never provided requested cost details or a strategy on how to proceed. I only learned the details upon further fine-print investigation that “observation care” falls under Medicare Part B, outpatient insurance, meaning copays for each individual service and significantly higher costs than as an inpatient. Drugs also add up since hospitals charge far more than pharmacies . . . and then there’s itemized costs for stuff like Tylenol ($12± per pill) and medicine cups ($10± per cup).

 In the end, the healthcare monolith seemed unable to handle our anomalous situation. I always thought that American claims about respecting the elderly would somehow win out and lead to a compassionate TV-show-style resolution. I still feel guilty about how naive I was. Again, lucky for her that dementia rendered her oblivious to the ongoing comedy of errors.

Medicaid finally came around to diagnosing the issue: Christina had illegally gifted me and my brother much of her life savings—I assure you, a measly sum—within their five-year Medicaid “look-back period.” 

“What can I do with my money?” She wondered a year earlier in a moment of clarity and charity. But, we learned that these gifts would have to be fully reimbursed before Medicaid could kick in with coverage. Impossible because it was already spent! I mean, that was the whole idea: gifting my brother who, with Parkinson’s, was basically indigent and under-insured.

Rachel Corbett, in “Medicaid’s Dark Secret” (The Atlantic, September 2019) noted  “Medicaid . . . that provides health care to more than 75 million low-income and disabled Americans, isn’t necessarily free. It’s the only major welfare program that can function like a loan. Medicaid recipients over the age of 55 are expected to repay the government for many medical expenses—and states will seize houses and other assets after those recipients die in order to satisfy the debt.”

OK, now I understand. In other words, there’s NO reason for asset-poor Americans to sock away any spare cash in low-interest bank accounts because Medicaid seizes every cent anyway until you’re destitute and prideless, before paying out a single limp dollar. The poor who gift minuscule assets to family are often cast as criminals, embezzling federal funds, while the moneyed classes hire financial advisors to set up asset protection trusts far beyond the reach of Medicaid administrators. (In many European social democracies, seniors keep a significant portion of their wealth to ensure a dignified retirement).

I’d done some research, however, so, when I mentioned the “three exceptions to the look-back period penalties,” two of which we may have qualified for, it was all news to Medicaid reps. I’d even highlighted the paragraph so I wouldn’t think I was being gaslighted.

While on the phone with Medicaid staff, a nurse came by with Christina’s lunch— Oh, she’s already had lunch—oops. The following day, it’s already 11:00 a.m. and—What? She hasn’t eaten breakfast yet? We’ll get her one right away. But forty-five minutes later: still no breakfast—ah, the daily grind of general misfittery.

Shorthanded staff, squeezed between patient and stockholder interests, continued to scurry through the day with their standard Cheshire cat smiles.

The professionalism we did encounter was utterly heroic, anomalously provided by outlier professionals who had learned to bend the rules, game the system—getting results despite that very system. They were more than mere mortals, they were flesh-and-blood heroes who operate way beyond their job descriptions. Thank you.

Ah, finally I’m introduced to the independent contractor liaison who hooks hospitals to nursing homes to patients. This spray-tanned liaison with faraway eyes seemed immediately impatient, distracted as I described our blackhole dilemma and noticed a grimace stretch across his smooth face, almost immediately ready to declare that there was little he could do and that it was probably better if I found a nursing home myself.

“Really? How about you pay me your salary for the day?” I mumbled maybe too softly for him to hear.

I felt like I was in some black-humor drama where no one has read the script that may not even exist. The director is out, and no one knows his name. The actors don’t know their lines and have not learned their cues. Any laughter will come from recycled sitcom laugh tracks.

Every morning I encountered a new set of glazed, get-me-out-of-here-I’m-out-of-my-comfort-zone faces behind the reception desk and had to repeat my story for a new set of faces. Chronic hospital understaffing makes me sympathetic—don’t pop too many difficult questions, be commiserative.

By the third day I was telling Christina my stories of life in Amsterdam, daughter Paloma in school, her band. My voice is soothing to her, but it all seems beyond her, abstract like scat singing. The TV is on, but we’re not really watching CNN chat shows, heads bobbing, chewing air in the background, when I notice her transparent skin hanging from her bones like sheer curtains from a clothesline. I pinch her veins between thumb and forefinger and move them around like strands of blue spaghetti.

Christina’s hospital roomie, recovering from pneumonia, is ready to return to her empty home—her husband having passed away last year. Grace’s story: housewife most of her life, nothing fancy, nice life, patch quilts for her kids, daughter’s a lawyer, a few cruises, a hilarious wedding.

Staff came by to inform Grace that she could prepare to leave. And that she did with enthusiasm. In no time her bag was packed and she was seated in a chair with a cardigan draped over her shoulders. And there she sat and sat for hours, until they finally informed her that her ride wasn’t happening today. Too late—it’s 4:45 p.m.! Why? Staff explained: the hospital is at the mercy of the local taxi company and they don’t pick up after 4:00 p.m. Weird, especially since the hospital feeds them rides all day long every day. You can’t make this stuff up.

The following morning I’m greeted by Grace, sitting in the same position in the same chair, clutching the same bag with the same anticipation. But it’s not until 4:00 p.m.—twenty-four hours after the initial booking—that they finally make a move to wheel her down to the lobby. By now she’s testy, sarcastic, shaking her head, jesting: “I feel like I’m in an episode of M*A*S*H.”

“Yea, but an unfunny episode.”

We laughed heartily and my last image of her was her best raised-eyebrow-if-looks-could-maim glare, with a grin that indicated she’d come to terms with institutional absurdity.

Christina began laughing too because laughing is infectious. And why shouldn’t she join a good laugh even if she’s unable to understand or even hear the joke. Her obliviousness is not recent. Two summers earlier, we began noticing she was mistaking shadows for animals darting across the road. An eye exam she insisted she didn’t need revealed she’d been driving with cataracts for years! Imagine driving around gazing through the bottoms of two Coke bottles. She also claimed her hearing was perfect after insisting someone had stolen her hearing aids, which she “didn’t need” anyway. Her fakery was no doubt deflection to spare us the worry of further enfeeblement but also because she actually seemed to think that if you con yourself into believing something you can conjure yourself back into a former youthful, dignified state—or at least con others into believing so. It’s called delusion—or alchemy.

I still needed that clear diagnosis of her current state, however. A nurse eventually swung by, offered some observations, and mentioned palliative care. I didn’t know this term. Not to worry, she’d send the palliative care therapist around.

“What does palliative entail?” A fair question.

He gave me a bewildered look, like it was a trick question on a test he hadn’t studied for. He truly could not explain it, so I just let him escape with all the dignity an embarrassed shrug allows. Later, I look online: Palliative care means relieving troubling symptoms, improving quality of whatever life was left over to live at any stage of illness but applies especially to end-of-life care. After inquiring-haggling-pleading with two dozen nursing homes, I finally managed to finagle Christina into a nearby home. When I asked staff about taking the medi-van taxi to her new home, they warned: “You better have cash. They need cash up front.” One quoted $350!

“For a three-mile ride?”

“Probably closer to $150,” her assistant amended. Or maybe $105; or maybe $50. Staff tasked with this small detail had no schedule of set prices, no idea, even though this was a daily routine. Punchline: The ride turned out to be free actually, reimbursed by the nursing home. What is that state of mind between frustration and absurdity?

That afternoon I followed the taxi to Enchanted Hillview Manor. Nice view on a hill. A bit of green, clean building, tidy rooms, art on the walls, friendly staff. I thought: maybe things will work out. However, I was ill-prepared for their admissions process.

One individual basically stood between my mother and her new room and that was Dwight, the well-kempt, blank-stare administrator. In the Enchanted’s sun-drenched entranceway, overlooking the parking lot, he pointed to his shiny Acura convertible in the lot—“$43 thou.” A watch of a brand not commonly found dangling from a healthcare administrative assistant’s wrist.

He shook my hand, determined to express a warm welcome with a firm-but-awkward handshake that lasted uncomfortably long.

Overlooking his domain, the parking lot, he got down to business: “Well, Bart, by the end of the day we’re gonna NEED $18,000—in cash! Before she can be admitted!”

“But . . .” 

“That’s our policy, it’s nonnegotiable.”

“So I gotta go to a branch of my mom’s bank and bring back a bag of cash totaling $18,000?”

“Or a cashier’s check.”

“Her nearest branch is two hundred miles away.”

“That’s where you’ll have to go.”

“To get a bag of money?”

“That’s what we need.”

“Can’t we do an electronic transaction like the rest of the modern world?”

“No, that’s impossible. We need cash to move forward. Bottom line: we need $18,000—in CASH.” Like a mantra. “$18,000 TODAY, IN CASH!”

Christina’s room would eventually have cost $10,000+ per month, $366 per day—all part of the monetization of aging process.

I decided to visit the business manager in her office, catching a glimpse of mom unattended in a wheelchair in the hallway. She said that, indeed, electronic transactions are NOT an option, never have been. I persisted. She called the main office long distance. Even after some major negotiating and arm-twisting the answer remained “no.” Perplexed, I insisted that “it’s gotta be possible” and (held breath) … suddenly someone on the other end discovered it WAS possible after all and, miracle of miracles, we transferred $18,000 (all of Christina’s remaining assets)—electronically to Enchanted Hillview.

The upbeat, kindly liaison offered a tour of Enchanted Hillview that ended in Christina’s room. As she was wheeled off to orientation and a medical assessment, I decorated her room with familiar photos, trinkets, a sunflower in a jar, a Van Gogh print . . . and mentioned Dwight. With raised her eyebrows, she explained that he was a nepo hire without a real job description, a “sweetheart job” for the son of the regional director of this nursing home chain. She and staff had to tolerate him, undo his daily mess-ups; she apologized for me having to deal with him. And then, indeed, I noticed colleagues avoiding Dwight because he got in everybody’s way.

An hour later, I wheeled Christina into her new room. Her face lit up. Yes, it was almost homey. And that’s how I left her, leafing through her books and photos.

I came back early the next day to sit with her in her room, rummaging through more photos, retelling stories of the mischief me and my brother got into. She tapped the appropriate photo whenever I mentioned a name to show she could still link names to faces.

I wheeled her down the hall to where the palliative care patients had gathered for lunch in the cafeteria. Here she could join the others and maybe make new friends. Some wanted to come off as jokers and you just laughed along even if they weren’t very funny.

Several staff members assured me everything was fine. Mom was already acclimating and staff hinted that it was time for me to leave. I slipped my hand free from my mother’s tight grip. As I left, I waved and she waved back meekly. I was going off grid for the first time after many months of administrative haggling, driving to Seneca Lake to visit an old school friend for a day.

Halfway there I received a call; my mother had faltered, had gone unresponsive during lunch. I spun the car around, raced back, speeding all the way.

I leaped up the home’s stairs two at a time and found her lying propped up in her bed, staring straight ahead, breathing heavily, mechanically through an oxygen mask as if each breath was a reminder that it was the second-to-last breath she might ever breathe. A nurse said she’d been resuscitated—despite our do-not-resuscitate order on file.

Christina was no longer who she had been only hours earlier; now ghostly, like an empty cicada husk clinging to a tree. It looks like it’s living, but when you touch it, it crumbles. She had no more words, her wordlessness more likely the result of a stroke than any melancholy. I wondered: could she still feel abandonment, loneliness? Her hands cold, feet even colder. I rubbed them, pulled on an extra pair of socks, placed her hands under the blanket.

Her eyes lifeless, stony, panic-struck and opaque like buttons clinging to an unwashed blouse. I followed the line of her gaze, fixated on the corner just past her window where ceiling meets wall. I attempted to engage her, commenting on her clothes that we’d bought together last year . . .  But there was no twinkle, no smile—her soul had maybe already vacated the premises.

Then she gradually lifted her arm, stiffly pointing to that spot in the corner that caught her eye—maybe she saw a guide, a shadow, a crack or portal, which, upon entering, would lead her into another world. I rubbed her cold hands some more. Her skin pale and sallow; she was sweating and shivering. I was reminded of that sickly, discolored yellow of old dusty candles.

She lifted her arm again, pointing to that mysterious corner.

“What do you see!?” No response. Although you want to believe she’s attuned to something more—proof of heaven?—but eventually you’re disappointed. Maybe neurons were igniting cinematic brain screen images of a fantastic nature to fill a void. Oliver Sacks was certain that near-death experiences were the collateral damage of dementia.

Her arm then fell to her side, her breathing grew erratic, rough, and was interrupted by a hoarse click-gurgle, followed by an immense echoing silence like a sigh that just hung there like a cloud that would never be inhaled again. A person one minute, a statue the next. I touched her forehead; it was very cold, colder than the AC or the coldest day of her Hunger Winter (Dutch Famine) of 1944–45 that she, a flinke meid, stiff-upper-lip, emaciated teen gal, had survived in war-torn Amsterdam.

For me: a sense of relief; for her: maybe a dignity reclaimed in death.

Final punchline: The involved institutions remain anonymous to this day because, ironically, despite efforts to secure paperwork, answers to questions; despite enhanced billing software that efficiently facilitates the monetization of healthcare; despite vague warnings from staff about $6,000+ out-of-pocket expenses plus untallied meds, our case somehow fell through the cracks and we were never billed by the hospital. Nothing. Zero.

If you too had experienced this chaotic, burning-anthill ambiance, you’d no doubt chalk it up to systemic dysfunction with an overworked staff unable to negotiate a broken system. But naive romantic that I sometimes still am, I continue to harbor hope that a single sympathetic I’m-not-going-to-take-it-anymore administrator with a single DELETE keystroke managed to send our entire fat file of medications, tests, and unpaid bills into some unretrievable oblivion, ultimately saving us from an unfathomable debtor’s purgatory.

☤

Christina Gesina Kroese Plantenga, ninety-four, died at 3:20 p.m., 22 August 2018, in upstate New York. After that last hoarse rattle vacated her final breath, I sat in her room, fumbling with an article in a glossy medical magazine, reread the quote by Michael Foley in The Age of Absurdity: “The escape from self is into a mystical unity . . . a departure of light, as if that cantankerous noisome self is sucked out of light into an eternal darkness and that darkness is as welcoming as a big, humid grass field, aromatic and floral . . .” 

Again, I wondered whether she felt that encroaching finality. I stood up to alert staff, dashed out, and, not thinking, very gently closed the door behind me, as to not disturb her.

bart plantenga is the author of numerous novels, two short story collections, two memoirs: Paris Scratch & NY Sin Phoney in Face Flat Minor. He has also written a broad range of material from award-winning history articles to CD liner notes. He was one of the founding members of the NYC writer group, The Unbearables. His books YODEL-AY-EE-OOOO: The Secret History of Yodeling Around the World and Yodel in HiFi and The CD Rough Guide to Yodel received international attention and have created the misunderstanding that he’s the world’s foremost yodel expert. He produces two monthly podcasts: DigScape & iMMERSE!. He’s also a DJ & has produced Wreck This Mess in NYC, Paris, Amsterdam, Rotterdam since forever. After many years in the US, Paris, and elsewhere, he returned to his native Amsterdam in the late nineties.