Try as we do, us Americans still croak. One and all, somehow, even today. We are done in by ten likely suspects: heart disease, cancer, stroke, diabetes. Nephritis. Suicide. Yet we can and do fight these things. We have working cures, preventive regimens, ways to halt the damage for all of these commonest causes of death.
All of them, that is, save one.
Alzheimer’s disease is practically unheard of in adults younger than 40, and very rare (one in 2,500) for those under 60. It affects 1 percent of 65-year-olds, 2 percent of 68-year-olds, 3 percent of 70-year-olds. After that, the odds start multiplying. The likelihood of your developing Alzheimer’s more or less doubles every five years past 65. Should you make it to 85, you will have, roughly, a fifty-fifty shot at remaining sane.
Eighty-five, though! That’s infinity-and-a-day away. Except that, by 2030, the population of Americans aged 65 and over also will have doubled. At that point, the number of people suffering from Alzheimer’s or related dementias around the world is expected to hit 76 million. Twenty years after that, in 2050, the number will be 135 million, including new cases in rapidly modernizing places like China and sub-Saharan Africa. The cost of their care in this country alone is projected to hit $1 trillion per annum, inflation not included.
There’s nothing new about aging. But Alzheimer’s is not simply a byproduct of old age. It is a degenerative brain disease, a fatal one. A degenerative brain disease that almost exclusively targets people who, prior to the twentieth century, were demographic anomalies.
In 1900, about 4 percent of the U.S. population was older than 65. Today, 90 percent of all babies born in the developed world will live past that age. Barring a miracle cure, or some kind of Stand-esque superfluenza, dementia will become the public health crisis of our time. A late interpolation into the shared story of human existence.
So far in the future, my guy! you might say. Who knows what medical science will cook up in the meantime? Anyway, I’ve seen the movies; I remember the dad from The Corrections. I know how this story plays out.
To the former bit of rhetoric, about the future: very true. A breakthrough may come. To the latter statements, about artistic representation—that all is great! It is great that the specter of Alzheimer’s disease (in particular) and dementia (in general) is beginning to ghost around our culture.
But this trickle of Alzheimer’s narratives will one day be an inundation. And, already, it’s ossifying into a genre. We know what to expect in a dementia tale: The devastated spouse, say, whose husband of 60 years flinches fearfully whenever she wipes at his mouth. Or else the pampered (if not little loved) child who comes of age while overseeing what age has ravaged.
I could tell you any number of such true stories. I could tell you about one or another patient at Isabella Geriatric Center in north Manhattan, which I frequented when I lived a few blocks up the street. I could tell you about the mute, smiling seniors I met on a reporting trip to Hogewey, the pioneering dementia facility just outside of Amsterdam. I could tell you my own story, about the three family members who metamorphosed into jabbering Lears before my eyes.
The thing about these stories—compelling as they can be—is that they tend to work against themselves. They have a dampening effect. Emerging from one, you feel a little stupefied, and bone-tired, as though you yourself have just swum through six feet of cemetery dirt. The reading or viewing experience is harrowing, grievous— truly scary—but also inconsequential, in a way.
Scary because dementia creates what should not be: mindless persons. Mindless, selfless, unreasonable creatures, somehow still looking like human beings. We see a metaphysical incompatibility in them, and it is deeply unsettling. They might as well be headless bodies, up and shambling around.
Inconsequential because, for all their pathos, each dementia story comes across as an individual tragedy. You read it or watch it or hear about it, and you might fear something similar happening to you, but you can’t really imagine such a thing ever happening to you. Literally—dementia is unimaginable. We can’t put ourselves in the place of the demented; we can’t wrap our minds around what it must be like to lose your mind. Instead, you and me, storytelling animals that we are—we invent confident memories of our future.
And then, of course, it happens to us.
There is no cure, preventive regimen, or way to halt the damage of Alzheimer’s. Right now, the only means for change lie within us: how we conceive of the illness, how we think of the afflicted. So many people are going to have to live with this dehumanizing disease! How do we make sure that they are able to do so with dignity, compassion? The importance of this question cannot be overstated. How are we going to accommodate the least of us—and those tasked with their care—once they become so many?
Well. Here I will humbly suggest that, before we put down this magazine to blanch the kale, swallow the softgel fish oil (mercury-free), and retreat further into the crenelated abbeys of our hot-yoga bodies—we entertain a thought experiment.
Your correspondent in this story is a youngish guy, not terribly old, maybe your same age. He, too, lives in the city and bounces around creative industries doing real au courant, new-economy-type stuff. Freelance graphic design, Web development, all manner of “content creation.” A guy who, once upon a time, preferred not to work a full-time job. Who is now getting his demented old man ready for a journey.
Come on, he’s saying. He’s using two fingers to stretch the folds of his old man’s skin. With his other hand, he’s running a razor down his neck. The abrasive sibilance calls to mind shuffleboard pucks, or skateboards on sidewalks.
Remember when you finally bought me that short board? he asks his old man. And I cracked my tailbone within the hour?
The old man’s isn’t a thousand-yard stare; it stretches past that, barren and edgeless. Searching it makes your correspondent’s own eyes desperate.
He can no longer rely on his old man to change clothes, much less shave. Hygiene is too overwhelming for him. It involves too many steps: shed the garments, turn the tap, spread the lather, blot the blood, open the drawer, match the socks, tie the tie. The last time he was left to his own devices, the old man slept in his same outfit for days, overripening.
The shaving finished, your correspondent steers his old man into one of the apartment’s bedrooms, where clothes have been laid on a bed. He picks up a pair of looser-fitting jeans and says, OK, sit at the foot for me. [Misting through the old man’s head is a lingual vapor that cannot condense into the phrase, I don’t know how to act—I’ve never been here before.]
Do you want to wear your flannel shirt? your correspondent wonders. Or maybe the vintage Starter jacket you thought was so cool?
Cool, the old man manages. Too cool. Your correspondent dusts off a little smile for him, then turns away. Out the window, he sees snow sifting in wet, neuronal clumps. He hears his super scraping the front steps. You’re right, he says. We’ll put you in something heavier.
The old man scoots to the lip of the mattress, but when the jeans start sliding up his legs, he paws languidly at your correspondent’s head. Frankly, he says, buffeting the younger man with crepey palms. Frankly. I took my eyes off of you, and a steep street. You went down.
Some days he’d be so normal that your correspondent was guilty of thinking, Could it be that he really isn’t...? But then he’d come home and find the old man attempting to repair the toaster oven, which wasn’t broken but was plugged in, saying, Call her and tell her to bring home salami for hot sandwiches, his eyes flickering like bulbs half screwed in. The truth was that whenever your correspondent became the slightest bit comfortable with the condition, his old man took the next stumble along the downhill progression of his disease.
For his sake, your correspondent has: blocked the radiators; removed the knobs from the oven, stove, and front door; hidden a baby monitor in the spare bedroom; remodeled the bathroom in blue and yellow. (His old man’s vision has deteriorated to the point where he has trouble differentiating between objects that don’t contrast. When the toilet, sink, and tub were all white... mistakes were made.) Rock bottom was when your correspondent hastily painted his bedroom door—handle, hinges, and all—the same cream color as the surrounding wall, so that, should he need a moment to himself, he could drop out.
Your correspondent isn’t one to complain. But honestly, this was some horseshit. He had been robbed of his leisure time (hard to find a pro-bono sitter), his peace of mind (turn your head, and he’s off on another obscure mission), his savings (Medicare doesn’t cover this), nearly all of his rest (old man naps in the day and then rises at night, reanimated), and any visitors or well-wishers (they’re too politely embarrassed). He has ordered a cable package for the first time in 15 years, for a periscope’s view of the outside world. He reaches for words like millstone while making too much eye contact with delivery guys. He feels himself devolving into a cipher, a nonentity, by the day, hour, minute.
Buttoning his old man up, turning down his collar, your correspondent sees something scintillate in his face. [What did I do that this guy’s so pissed at me?] Maybe cognizance, he thinks, though probably not. [Kill ’em with kindness, his old man recalls, and so decides to beam.] At this smile, your correspondent very nearly loses it.
A fiancé, some kids, a blossoming creative life—dreams deferred. Would that this grinning life-leach perceived anything about the money and man-hours and future he was bleeding dry. Your correspondent wasn’t even free enough to fear that he was missing out.
OK, stand up, he says. We’ve got a plane to catch.
Snow is falling fast, lending the narrow street a confettied depth. Your correspondent made sure to leave five hours before their flight, plenty of time. The Internet said the precipitation will have stopped by then. Right now, though, it is a velvet crunch underfoot. Leading his old man carefully by the hip, your correspondent grasps just how much thinner he has become. Were he to give him a squeeze, his old man might keen like bagpipes.
As they come to the broad avenue, the old man points to the brown, tire-treaded snow that has been churned atop the pure white. [Crumb cake, he envisages. An associative flipbook of memories flitters past: Entenmann’s. Dad allowed one piece after dinner. The last dinner party. Friends gestured to shake, but their palms were lost in space. Blankness where names should be. Faces, too. As blank as clocks without hands.]
Where is everyone? the old man asks as harried pedestrians flow around them in the crosswalk. Where’s dad? Did he get out?
Your correspondent sighs deeply, applying a bellows to his spirit. He has learned not to correct him. Reality orientation, the literature calls it. It was one of the more popular care strategies, up until the 1990s. No, Mr. Jones, it’s not 1984. See the calendar? Your father couldn’t have just visited; he’s been dead for years. Gradually, it dawned on oft-bitten caretakers that this practice was quite upsetting to the demented—and more than a little sadistic. Getting the rug pulled out from under you á la Charlton Heston at the end of Planet of the Apes? With all the attendant anguish and disbelief? Imagine. Also, imagine forgetting that it ever happened, and then experiencing it anew, day in and out.
Instead, your correspondent says, They’re in Amsterdam, waiting for us. It’s supposed to be in the mid-fifties there! Not bad, eh?
[The old man offers a response—and thinks it came out OK—but sees on the face of the other guy that not one word was understood. This other guy, he resembles the old man—the old man of a few years ago, at least—and is speaking to him now, but the old man is not sure which language he’s using.] Take the steps slow, your correspondent is telling him as they duck into the subway station. Real widow-makers, these. [The old man looks up at him with lamblike credulity in his eyes. He has no choice but to believe he is being led somewhere in good faith.]
They stand far from the platform edge. As a train approaches, the old man squints into the false gale. He looks like none of a father, husband, or son; rather, a boy standing at the edge of a nighttime forest, listening.
Corroded brakes screech. Doors thump open.
The floor of the crowded train is wet and whorled with shoeprints. Seated between two strangers, the old man holds his ears while dragging a foot through the muck.
Your correspondent is hanging from a bar across the aisle, watching. Perhaps he could be forgiven for failing to identify the beginning. That was what unnerved him most about Alzheimer’s: Its onset was as insidious as a haunting’s.
Whenever he had visited his old man at his apartment (long since sold to fund the visiting nurse, occupational therapist, medication, moisture-proof pads, petroleum jelly...) in the years before diagnosis, your correspondent had found that, although a little softer and browner at the edges, his old man appeared fresh enough. Sometimes he couldn’t find his glasses, or the linen closet, but so what—who wasn’t seized by fleeting moments of confusion every now and then? When he spent whole afternoons trying to recall just which word he wished to say, your correspondent chalked it up to advanced age, “senior moments.” Even as the slipups became more egregious—a coffee can full of urine, the stereo remote hidden and half-melted in the oven—your correspondent ascribed them to flu, or a bad night’s sleep, or the general way in which the world spins faster and faster until those who used to be a part of it got separated, like sediment in a centrifuge.
All that time, the old man volunteered nothing about his loosening grip on reality. He was the kind of guy who prided himself on control—over himself, his emotions—and the incremental loss of it had been a continual shock to him. More and more frequently, he was confounded by what had been routine. The subway, for instance. One day, he rode past his stop on the F train. When he couldn’t remember which he’d gotten on at, or what the announced names meant, or even why he was there to begin with, he rode the train end to end for many hours, a complete stranger to himself. A station manager noticed him wandering at one terminus; all the old man could manage by way of explanation was, I fear I am not in my right mind.
After that, he would sometimes go months without incident or outage. Until—very suddenly—he would feel as if he’d woken from another in a long string of concussions. He was conscious but dumbstruck then, trapped in the space between words. He wouldn’t know whom he was talking to, or he couldn’t follow their line of questioning. He groped his way through social situations by relying on inference, body language. Amazing, what he was able to read from the lines in a forehead or the corners of a mouth. But the walls closed in. Scared of outing himself, he became quiet, still.
And he never dared think “Alzheimer’s,” much less say it out loud. Saying its name might make it real.
When the evidence of his old man’s altered state finally became irrefutable, your correspondent booked a long trip to a cabin in the woods, just the two of them. He hoped maybe to stir up the residue of happier times: rocks skipped, talks had, skillets scrubbed with sand. But during one squally night, your correspondent looked through a window and proclaimed, Raining cats and dogs outside. His old man—who had been sitting in cobwebbed silence throughout the preceding afternoon—jumped from his armchair as if electrically jolted. He rushed your correspondent, nodded into his face, and stormed out of the cabin’s front door, the wind spitting leaves and rain behind him. Your correspondent had never been so spooked. It was as though, this entire time, he’d been vacationing not with his old man, but a doppelgänger.
It took him weeks to realize: His old man hadn’t heard a sentence. He’d heard a string of individual words, and had taken his cue from the last one.
Dementia itself is not a disease but a set of symptoms; a syndrome, like Down or Asperger’s. It is a spectrum of traits and behaviors that together suggest the presence of some underlying malady. There are more than 70 known triggers, but Alzheimer’s disease accounts for about 70 percent of all cases.
Despite their many working hypotheses, scientists have yet to confirm a single theory that proves where Alzheimer’s comes from, or why. The disease seems to have sprung itself from deep within the human architecture, a curse written over the door to our last, hitherto unexplored chamber.
Some advocate for the cholinergic hypothesis, which supposes that Alzheimer’s is caused by the reduced synthesis of a neurotransmitter called acetylcholine. Alternatively, there’s the tau hypothesis, which posits that abnormalities in the brain’s tau protein end up dismantling neurons’ transport systems, loosing Alzheimer’s in the process. Some say Herpes simplex plays a role; others, an age- related breakdown of myelin, the brain’s electric insulation. Some researchers are taking a closer look at what air pollution might be doing to trigger the disease. Silver dental fillings, the crackpots say. If not flu shots. Or aspartame. Or aluminum cookware.
Long before the old man’s forgetting had begun, Alzheimer’s disease was there in his brain, lying in wait. Specifically, it was in his hippocampus, where it had sprouted. There, it germinated for who knows how long—years, maybe decades. Slowly, imperceptibly, it began to slither its way through and around his neurons and synapses, this ooze of dense, extracellular material. It coiled across his gray matter like kudzu, the invasive vine that kills as it spreads, obscuring the sun.
The farther that Alzheimer’s disease advanced into the old man’s hippocampus, the more his memory formation began to falter. There came relatively stable periods in his decline—plateaus—but Alzheimer’s disease is relentless and irreversible. In time, he was locked into the burning library of his existing memories.
The disease wreathed his limbic system, then wormed its way into the temporal, parietal, and frontal lobes of his cerebral cortex. From his temporal lobes—just inside his ears on either side of his brain—the disease took away his ability to fully process sensory input. Now, he sometimes heard or saw ... things. Hallucinations.
He also began to ask your correspondent, Who are you? What are you doing in my house? This wasn’t a problem of memory. He hadn’t forgotten. But when he beheld your correspondent, the image he saw did not match the contours of the image he knew. Agnosia is the term.
From the parietal lobes on the top of his brain, the kudzu wrecked his ability to comprehend physical contact. Touch, pain, and spatial awareness lost what meaning they used to have. The old man had never been a particularly affectionate person—he treated his body like a fish tank, no tapping on the glass—but as the disease stole over him, he began to act as though he’d ingested an empathogenic drug, Ecstasy or some such. He sought out rough, pebbled surfaces to run his hands over. He sometimes allowed your correspondent’s touch to linger and would shift his body into it, like a cat. He seemed to be looking for friction.
When the kudzu crept into his amygdala, he began to lose control over his baser emotions—fear, anger, yearning.There came new, startling outbursts in response to non-events. Occasional crying jags. These, from the man who used to sigh neutrally when he hammered a thumbnail black, were more than alarming. [You think I’m goddamn nuts, he wished to say then. But if you were getting what I’m getting here, you’d be doing likewise.]
The disease has reached as far as his frontal lobes, which house the brain’s system of retrieval. Previously, when he ran memories through this system, they were made clearer and more concrete by the reproductions. The paradox was that remembering reinforced the memories; remembering created copies that gained detail. As things are now, though, the old man can’t replicate his remaining memories. He can’t even rake through the deep ash of those already consumed by the disease.
The frontal lobes are also where his brain compares and contrasts the continuous flow of what’s happening now with what’s happened before. Because his frontal lobes have very little left to check against, the old man’s will—his very sense of himself—is vanishing. His crutches and quick fixes have already come to naught. He can’t program reminders into his phone anymore. He isn’t sure what a phone is. And the explanatory Post-its your correspondent slapped on every household item—they frighten him. He doesn’t see letters; he sees squiggles writhing across yellow.
Soon, the present will simply pass through him, unencumbered, like wind through a bare tree.
But that doesn’t mean the disease will stop. Once the plaques and tangles have reached the depths of his brain that control gross motor function, he will be susceptible to retrogenesis, a return to infancy observed in many late-stage Alzheimer’s patients. The physical capabilities he picked up over the course of his life will be undone in the reverse order in which they were acquired. He will lose the ability to walk, to stand, to even straighten his legs to the ground. His eyes will no longer focus, and his newborn reflexes will reemerge. At this point, if someone were to tickle the soles of his feet, he’d raise his big toes and spread the others outward, a phenomenon known as the Babinski sign, common only to infants younger than six months and the terminally demented.
Finally, his body will begin to shut down. The last in his long series of deaths. The old man’s extremities will leach heat and grow unresponsive. Complete incontinence will set in. His skin will lose all elasticity and become like wax paper wrapped around butcher bones. He will experience no hunger, thirst, or apparent consciousness as he drifts off in the third person. At his bedside, your correspondent will watch for more infrequent spouts of breath. The immediate cause of death might be a complicating condition like pneumonia, dehydration, or infection. But it’s Alzheimer’s that will kill him.
In booking this trip, your correspondent discovered that direct fares from New York City to Amsterdam are indefensibly expensive. The most reasonable ticket would see them travel first to Moscow before continuing on to the Netherlands. There, they would visit Hogewey, the Oz-like dementia facility that is pined after in chain e-mail after chain e-mail exchanged by caregivers the world over.
It was all irresponsible and ill-advised, traveling with his old man. Your correspondent understood that. But he also understood the last-ditch logic that compels one to thrust a baby through an embassy gate, or onto a lap in a whirring helicopter—the logic that prefers uncertainty tothe end that’s encroaching.
[Calm. Remaining calm is the thing to do here, the old man concludes, glancing around the jetliner’s cabin. Hurtling. That is the word for what this thingy is doing.] I’ll try not to stop in the middle and. . . He tries again. Sometimes I stop right in the middle. And I get ... can’t get on ... what you need to tell me ... big hand ... the thingy? [How long will this hurtling last, young man? he wants to know.]
I told you, we’re going to a special place, your correspondent answers. He hadn’t mentioned this trip to anyone else. He didn’t know what he would’ve said if he had. That he was hoping these Dutch miracle workers would take pity on him and his old man? That they would lower the bridge, grant sanctuary? All he knew was the two of them didn’t have a lot of time left. What else was he supposed to do? Hide his old man in the apartment until he hit his expiration date? We’ll be there soon enough, he adds.
When ... to home? the old man asks, stiffening in his seat. [I want to go home.]
Unconsciously, your correspondent runs through the conditionals of his caregiver’s if/then programming:
If out of nowhere his old man whimpers, “I don’t want to die!” Then he probably means, “I feel sick, though I don’t feel pain. I feel this way all the time, so I must be dying.”
If he ransacks the apartment one day before dawn, accusing: “You! You stole my money, you son of a bitch!” Then he most likely wants to say, “I used to carry a wallet. I used to be able to support myself. I’ve become shamefully dependent, and I don’t understand how.”
If he grows as taut as a string before it snaps, and mentions “home,” then he might be thinking, “I wish I could return to the time when I had a past, and an identity, and a purpose, and a place.”
Your correspondent pats his old man’s hand before settling in his seat and dinging the ding for a mini Glenlivet. A dour Russian stewardess arrives, spinning down foil trays of carp and taking no drink orders. Your correspondent spends the next ten minutes plucking wee bones from the filet, paring it into bite-sized wedges. It has been a while since his old man ate his last solid meal. If there’s more than one texture in his mouth, he doesn’t know whether to chew or swallow.
Elbows tucked in, wrists bent, utensils prodding ever so delicately around the tray, he pictures a Tyrannosaurus trying to defuse a bomb.
Your correspondent had packed a couple Alzheimer’s memoirs for the flight, but he couldn’t bring himself to read them. What bothered him about these tales—almost always written from the point of view of the caregiver—was how invariably they turned into horror stories. The memoirist loves someone deeply, thinks of that person as unbreakably bound to him ... until, one day, he discovers that this person might not be who he thought.
Usually, what follows is a painstaking reconstruction of the psychological gauntlet endured by the memoirist. The inversion of his life; the day-by-day descent into a personal hell. Meanwhile, the mask of his formerly loved one slips little by little until the big reveal: wife/mom/bubby is no more. In her place is a pod person, a boogieman who doesn’t care about the memoirist, may even mean him harm.
History is irony on the move. Turns out that, by so bettering and extending our lives, we have re-achieved suffering.
What’s taken for granted in these stories is the conclusion that a demented person is dead, or at least the living dead. So the main drama then—as in any zombie flick—centers on the living, how they’re managing to survive. The real victims here are the caregivers.
Rather than one of those, your correspondent cracks a new care guide, something with a beach-ready title like The Misery of Inertia. It, like all the literature, begs the reader to please, please look into nursing homes before the real bad dementia symptoms emerge. Like, the moment you begin to suspect that your loved one might have Alzheimer’s? Look into a goddamned nursing home. Good facilities require you to get on a waiting list years in advance. If you don’t—if you wait until you have to find a place for your loved one right now—you’ll have to take what’s available.
Some months back, your correspondent decided to do just that, check out the closest eldercare facility in the city.
When the elevator doors opened onto the eighth floor dementia ward, the funk that greeted him and his old man was not exactly offensive; it had the zoological tang of a petting farm. The ward was shaped like a serif T, with two wings of rooms branching off of a hallway that led to an activity center. Only the ambulatory demented were allowed here. As soon as a patient stopped moving, he or she was hustled off the ward, which was euphemized as “the neighborhood.”
Your correspondent had to drag his old man off the elevator. Black mats had been placed in front of its doors, and to his (and any potential defectors’) compromised sensory system, the mats appeared to be bottomless pits.
The care strategy here—as at most U.S. nursing homes—was originally modeled after that of hospitals, in part because that’s what reimbursement and regulatory policies supported. In a hospital, a patient arrives, waives his autonomy, gets put into an assless gown, gets treated, goes home. It’s a short-term medical model with an emphasis on hierarchy, routine, and efficient but depersonalized care. Not all U.S. nursing homes retain this operational structure—just the more affordable ones. It is at odds with the needs of the demented.
On the eighth floor, almost every one of the three dozen patients was seated around a long table in the activity center. They arranged themselves like kids in a public school cafeteria—the Spanish speakers sat clustered around the left end, the one Korean woman was in the middle, and the black and white patients were on the right. At the English side of the room, “The Price is Right” was going unwatched on a flatscreen.
The patients came from all over the city and state, many transferred directly from hospitals. Prior to their admittance, their families or caregivers filled out a questionnaire on their behalf. They assigned numerical values to the patient’s eating ability, mobility, and propensity for “disruptive, infantile, or socially inappropriate behavior.” The surveys were not profiles or biographies; they were for streamlining care. The nurses often learned the most about these patients from their obituaries.
Well? your correspondent asked his old man. What do you think?
The old man took a seat at the table. [He had no recollection of the conduct that had led him to this place: the wandering, the masturbating, the repetitive questioning, and the tics. He did those things because they were all he could think to do to bridge the moment-by-moment emptiness that yawned before and behind him.]
Some time ago, it was as though a switch had been flipped in his head. Rather than despair over his evanescing abilities, the old man insisted that he was capable of caring for himself. This was one of the great ironies of his disease. He wasn’t denying the reality of his situation—he honestly couldn’t remember that he was demented. Gone was the humiliation of being a burden. Gone was the taint of that gravest of sins: curbing someone else’s freedom. Gone was his vision of himself as a jettisoned space cadet, floating farther out of radio contact and into soft oblivion.
As he saw it, he was about the same age as the man sitting next to him. [A man in the prime of his life. He felt fine. A little groggy, maybe, like he’d had three beers on his way home. Which—why was he not on his way home?]
Of this place? your correspondent persisted. You like it here?
The old man stood up to get away from the question. He made it halfway down the hall before a nurse caught up to him. She cinched him around his thin arms and pushed him toward his seat. [He tried to blurt an objection, but doing so felt like running to hop a train that was just out of reach. He tried to hit her, but his hands were clamped to his sides.] Your correspondent watched a free-floating state of distress blow across his old man’s face, one that would long outlive the memory of what had caused it.
After lunch—nurses in surgical masks gossiping with one another while scraping food into the mouths of the more derelict—came quiet time, which to your correspondent was indistinguishable from the non-quiet time that had preceded it, save for the lights got turned off. Patients fell asleep where they sat, casket-style, their heads canted back. Those who stayed awake put a hand to their mouth, or temple, or chin, and looked into the distance. Every now and then a nurse came by and plucked a patient from her chair, taking her to the bathroom or for a walk around the ward. An orderly wheeled in a cart stacked with board games and magazines. He sat down, flipped through his phone, got up, and wheeled the cart away.
It was hard for your correspondent to keep in mind that, ostensibly, these were people’s loved ones. What’re their families doing right now? he wondered. Where are they, what’s so important that this becomes acceptable?
He wanted to judge them. But he could sympathize. How long had he dreamt of planting his old man in a (tasteful, respectful) home? Ho ho, be honest. How often had he pictured himself pulling a Risky Business, except the song he’s dancing to is “I’m Coming Out,” and instead of a suburban Chicago home, the thing he’s dancing through is his rehydrated life?
Your correspondent knew that such a day would come. It comes for every one of the eleven million Americans who home-care their demented relations. The first two-thirds of the disease’s arc are grueling if manageable. But then your loved one stops speaking, eating, or recognizing sound. You strain after them, but there’s as much “loved one” in your loved one as there is ocean in a conch shell. The literature is telling: Dementia caregivers frequently struggle with clinical depression, and they die at a rate 63 percent higher than their unburdened peers.
It ruined you, caregiving. Emotionally and financially. For eight or twelve or 20 years, you poured yourself into a cracked, empty vessel. And for what?
Because, as much as people invoke the Golden Rule and all that, devotion was not something your correspondent was particularly trained (or expected) to practice. It’s maybe not the most attractive thing to admit, but there it is. Giving himself over to another? Spending his days helping someone else get through theirs? Babies, maybe, sure. But with babies you got that snowballing sense of pride and joy. You got to watch a consciousness you created (!) countenance beauty and fellowship; you got to blissfully track her individual flourishing. And if you didn’t fuck it up too bad, maybe one day you got to see her become a respected venture capitalist, one of the philanthropical stripe, who will soon repay you with a sleek pleasure-craft or chalet. A warm Thanksgiving, at least.
[Though it’s not like this was how the old man had imagined going out. He, like anyone, had hoped that his life would more resemble a stock chart. Occasional hiccups, yes, but those would be offset by continual record highs. A diagrammed staircase to heaven: fulfilling work, travel, a loving spouse or two, some grandbabies. Then, the bubble suddenly bursts—a painless, collateral-damage-free kablooey—and that’s all she wrote.]
Your correspondent would never tell another living soul, but—sometimes? He fantasized about knocking out his old man’s teeth and burying the body unidentifiable. Then, at least, he would be to the world what he was already becoming to him: a cold, anonymous skull. It would be an act of equitable mercy. Your correspondent’s heart would finally stop flip-flopping like a hooked fish. He’d be returned to the stream of his life. And his old man would certainly find himself “in a better place.” Anyplace and noplace at all seemed like better places.
And yet, even after a million such thoughts, your correspondent still took off running at the sound of his old man’s raised voice. He still got up in there, no reservations, face to face with withered nethers, where he hummed soothing nonsense and wiped up clammy shit.
Would you care to try? his old man was asking him, holding out a large piece of the children’s puzzle that a few patients were picking over on the table. The tenor of his question tracked upward, as though your correspondent was the new kid in school and his old man was feeling charitable. Too big for their wrists, the other patients’ alarm bracelets rested against their hands like horseshoes around a stake.
A few hours later, after dinner was served and a far too jaunty version of “Swing Low, Sweet Chariot” attempted, your correspondent decided he’d seen enough.
He led his old man to the elevator bank, supporting his hollow weight by holding his belt from behind. He reached under a taped-up sheet of printer paper and pressed the down arrow. Soon, the eighth-floor residents would be shepherded to the railed beds in their double rooms. They would sleep, or they wouldn’t. The sun would come up on them, Groundhog Day unto death.
On the wall above the button was a list of the recently deceased. Three patients had expired here in the past month.
Their families—like millions more around the country—had paid about $219 per day, or $80,000 per year, to bury them preemptively.
What is it that we actually love, your correspondent wondered, in those we claim to love?
In the morning, with minimal fuss, he’s able to get his old man aboard a 10:30 a.m. commuter train headed from Amsterdam Centraal to nearby Weesp, where the famed Hogewey complex is located. Your correspondent is suffering from the hot eyes and boiler-room skull that ride along with jet lag. But at the moment, he’s more affected by either his competence or his good luck. Just being here with his old man is like drawing a short thread through the eye of a needle in one go.
Go our separate ways, his old man says, gazing out at the sloped dikes and drainage canals. See what we see.
The place they’re zipping toward is renowned in the medical community for having completely reorganized itself according to the person-centered approach to caregiving. First popularized in the 1990s, this approach stresses the need for doctors, nurses, and loved ones to accept the demented person as he is now, not as he once was.
Hogewey sits at the edge of a bedroom community 15 minutes outside of Amsterdam proper. Five years ago, it was a nursing home like any other: a four-story tower rimmed with green space that was inaccessible to the ward-ridden patients. Following its government-funded, experimental reconstruction, though, Hogewey became a synecdoche of the world around it: an enclosed, open-air township with its own two-story apartment blocks, tulip-lined boulevards, and bright airy plazas.
From the outside, Hogewey’s high walls are imposing; inside, there is a theater, pub, restaurant, grocery store, salon—even a small park with a kidney-shaped pond. The 150 or so residents have the run of the place. They don’t know they’re in an assisted-living facility. They don’t know that every one of the 240-plus people staffing Hogewey’s shops and amenities are dementia-care professionals.
“Think of a traditional nursing home,” asks Yvonne, a layered experience of scarves and thick blonde hair, one of Hogewey’s founders. She is speaking to a small crowd gathered for the English-language “study day,” a $300 opportunity for the curious or desperate to see the cutting edge of dementia care. (Lately, Hogewey has been so swamped with outside interest that a public-information officer has been hired to coordinate multi-language “study days” and corporate visits.) Your correspondent and his old man are joined by a stooped, indubitably British psychologist who believes he can replicate Hogewey on the Isle of Man. Hovering around them is a dowdy social worker from the north of England, here to see if she can’t smuggle ideas back into the monolithic National Health Service. Arriving via limo are two vampiric Finnish businesswomen. One is an entrepreneur; the other, her business manager. They have smelled blood.
“In that traditional nursing home, you wake up and you see a nurse in a nurse’s uniform,” Yvonne says, leading the group into Hogewey’s restaurant. Here, your correspondent hands over his old man to a young aide in street clothes. Your good friend’s daughter, he lies. He stops himself before he adds, Go play. [The old man walks off slowly but composedly, feeling as though there is an invisible stack of posture volumes on his head.]
“In that nursing home, you ask yourself, ‘Where am I? What’s wrong?’” Yvonne explains. “Then you have to be reminded where you are. Which you forget, but then you carry the anxiety with you.” The restaurant is tastefully appointed with inset tangerine lighting, purple textiles, and a full bar. A few visitors are dining with their afflicted relatives. “The demented have support here that everything they do is OK,” Yvonne says, presenting her guests with an array of fine milks. “We want to remove anxiety. No sense that they’re in a wrong place, or that they’ve done something wrong, or people are only dealing with them because something is wrong with them. We want them to feel, ‘I have a right to be here.’”
Like all Dutch nursing homes, Hogewey is publicly funded, and must make do with a per-patient budget of about $7,000 per month. The waiting list is long, even though Hogewey accepts only the most serious dementia cases. The reason there aren’t more Hogeweys, Yvonne tells the group, is that doing so would require a radical upending of dementia-care organization and hierarchy. Governmental funding is drying up as it is, and new construction is certainly out of the question. The only way they can continue their experiment here, she admits, is if Hogewey remains a top-ten care center as reported by residents and their families in a biennial survey.
Surveys are crucial to the success of Hogewey. Prior to admission, a patient’s family must fill out a deep personality questionnaire-cum-biography: What was their loved one’s childhood like? Where did his or her interests and values lie? What was the story they told themselves about themselves? Depending on the answers to questions like these, the patient is added to a group apartment belonging to one of seven “lifestyles” reflecting contemporary demographics. There’s the urban lifestyle group, the traditional (or blue-collar) group, the Asian, upper-class, cultural, “homey,” and Christian groups.
“Small-scale living,” Yvonne says, “with people you’d choose to live with if you could.” Here, the demented are placed in a comfortable, familiar fiction. Only occasionally does a resident from one demographic shuffle over and knock on the door of another.
Yvonne walks the guests to apartment number 15, an upper-class home. The interior walls are covered in heavy green paper patterned with gold filigree. In the large living room, an ornate chandelier hangs above the overstuffed furniture. On it sit five ladies and one gentleman in fenestral glasses. All of them are staring blankly if contentedly at the guests; to your correspondent, they look like a line of guttering jack-o-lanterns. One of them waves. The Finns walk over to snap selfies with her.
The kitchen, normally joined to the living room in other groups’ floor plans, is separated here by an ornate panel screen. Behind it, the two nurses assigned to the apartment are posing as servants, preparing dinner. One of them uncorks a bottle of wine.
“They are not being fooled,” Yvonne says, opening a fluted armoire stacked with files and a computer for record-keeping. “We are making it so they have taken away from them the constant reminders that they are no longer normal, whatever that is.”
She leads the group to the wing of bedrooms, opening the door to one. It is furnished in nice blonde wood and has a regular twin mattress. “We have never had a bedridden patient,” Yvonne brags. “Except in the lead-up to death, for a week or two. It is not a part of dementia, being bedridden. It is a symptom of how we treat the old and infirm.”
The study group leaves through the front door, which is never locked during the day. (It is locked at night, when the patients are monitored remotely via microphones hidden throughout each apartment.) “We have benches to sit on, tandem bikes to ride, places to socialize,” Yvonne points out. “At an average nursing home, a patient gets 96 seconds of daylight per day.”
The group ambles along the shopping district. It is laid with immaculate dark-red bricks, bricks like in a revitalized downtown, your correspondent thinks. Inside the travel agency, a volunteer is coordinating future day trips for patients. In the sconced pub, the card club is playing a kind of table shuffleboard. While the “cashier” keeps her eyes peeled, a few residents float through the grocery store, grabbing at gin and fresh vegetables. The physiotherapy department has its own storefront, as does the maintenance office, the window of which is displaying resident artwork. The salon houses the only freelance worker in the facility, the hairdresser, whose fretting over blue bouffants will be billed directly to patients’ families. No currency is exchanged inside Hogewey.
Down a byway whisked with bare apple and pear trees, Yvonne escorts the group to a working-class home. “When it snows,” she says, “and we clear paths through the snow, the demented will walk through the cleared paths. They will act as normal as you expect them to act.”
The “traditional” apartment is hung themedly with washboards, hammers—all the manual tchotchkes. Your correspondent wonders what decorations his generation would get. (Tablet computers? Debt certificates?) In the living room are more men than women, and more mustaches than in the upper-class house. The staff is treating the demented like extended family, or neighbors. A disguised nurse gives over dripping dishes to a woman whose hands dry them with a fluency that seems independent of her body. In the house workshop, a man cuts and pastes a collage, unpeels it, rearranges it again. The windows look out on Weesp, where schoolchildren are skipping home. Upon seeing them, one resident pushes herself out of an armchair and pads to the tempered glass. She gestures their way, rowing her arms as merrily as an oceangoing cruiser looking back on the dock.
At the conclusion of their visit, the guests are taken into Hogewey’s theater, for fine cheeses. The British psychologist asks Yvonne what their plans for the future are. “Officials in Germany, Norway, Switzerland, and England have begun working with us to build similar facilities,” she says. “They understand that you cannot appropriate just one part of our approach. You cannot take tricks. It won’t work.”
Into the theater wanders the old man. It’s a small shock to see him alone, on the loose, totally vulnerable. As with a fumbled football, your correspondent feels impelled to dive after him. [Yet he moves placidly down the aisle, as if through a bit of deja-vu.]
“The dream,” Yvonne goes on, “is to make mixed-use developments for all the people, not just the demented. We want everyone interacting. We get a lot of young people who visit and say they wish to live here, too. They see it is different. It is like a real hamlet.”
At this, your correspondent can’t help but laugh. The answer to his old man’s welfare—his own—ends up being something as seemingly, startlingly trite as, “It takes a village.”
But for all the good that Hogewey does and represents—there’s no going back to cooperative villages, where illness and death are allowed to stay in the picture, and leeway is collectively granted to the unwell. For one thing, illness and death are anathema to the selling of stuff. And the selling of stuff, the buying of stuff, the working of multiple jobs so your correspondent can do both—in short, participating in the consumer economy—this is the very definition of health in America. Mental and otherwise.
We'll get our Hogeweys eventually, your correspondent thinks. They will be bigger, and better, and more American, by God—and they will cater to our moneyed amnesiacs. Exclusively.
The rest of us broke-dicks, we’ll have to get creative when it comes to finding a place for the demented in the plot of each day.
On their way out of Hogewey’s front gate, your correspondent turns to his old man and says, How about we hit the town, have your favorite—lamb chops—for dinner? [The old man processes this as, Wooden lamps are dimmer. But seeping through him is a nebulous sense of comfort and relief. It’s as though someone somewhere had stuck a needle in his voodoo doll, benignly so, in the exact right spot.]
He takes this young man’s hand and squeezes it with something like tactile hunger.
Your correspondent coos, rolls the hotel blanket to his old man’s chin. He is exhausted.
Returning from Hogewey, they got lost along the avenues bridging Amsterdam’s concentric canals. Your correspondent became increasingly worried (and embarrassed) as his old man paid less and less mind to the bicycles and sniggering Continentals eddying around them. This was new, for on trips past, his old man had always refused to open a map, ask questions, appear in any way like he didn’t know where he was going.
But amid the ease and banter on the street, he was wandering Magooishly, with a self-deprecating and self-orienting humor. The unfamiliar was demanding his focus, greedily occupying what remained of his consciousness. His dementia made all things new. He looked away, and the canal was gone. He looked back, and it was fresh and novel, flowing green glass.
Dikes! he exclaimed. Dikes all over the place!
Some mod and ethnically indeterminate young adults stopped to feign outrage over the perceived slur. Your correspondent pulled them aside and whispered, I’m sorry, he has Alzheimer’s. He’s lost his mind. They themselves apologized, commiserated. They asked, Does he still recognize you? They wanted to make sure that, At least he knows your name, right?
By asking if the old man recognized him, what the young people really wanted to know, whether they were aware of it or not, was, Should we recognize him? As a person?
Your correspondent began to feel a little bit bad for having brought his human hourglass here, to Amsterdam, the Disneyland of youthful self-actualization. The thick-haired Frenchwomen, the bros high and braying at the start of their Grand Tour—he did not want to be the one to break it to them that, dope as they are now, their lives will be breached by pain and ungovernability. They might be lucky enough to make it to retirement age (assuming that’s still a thing) more or less free, autonomous, and self-directing—with no real obligation to any narrative other than their own. Then, WHAMBO! They or a loved one or a loved one’s loved one will dement.
He did not want to say this. But he thought somebody should. Somebody should tell them that theirs will be an individual tragedy, albeit an individual tragedy that is replayed again and again. An entire First World of individual tragedies.
If he were a braver man, he would have rented a skiff and shouted it from the waterworks: Peers! Children! History is irony on the move! Turns out that, by so bettering and extending our lives, we have re-achieved suffering!
Instead, your correspondent leaned against the railing with his old man. He rubbed a widening spiral into his back. He thought on the phrase that was the wellspring of the rationalistic, capitalistic, Westernized world around him: “I think, therefore I am.” According to that logic, this world is free to stop treating you as a “you” the moment that “you” forget who you are.
Alzheimer’s, then, is more than a disease of the brain. It is a pandemic of selfhood.
If you believe that you, your self, is a singular inner possession— this cumulative state of you-ness, which you’ve cultured like a pearl—then dementia is a fate worse than death. It is watching yourself get shucked.
If, on the other hand, you believe that you are more the product of your chosen communities and relationships—that what you are is a loving husband plus esteemed teacher plus an even better friend—then what happens when your wife and pupils and old buddies stop visiting you in the home? Are you empty under all those layers, like a cartoon mummy?
If you can’t hold onto what makes you you, and if other people can deny it, anyway—what’s left? What was there to begin with?
It’s almost too much to consider. Especially when whatever it is you happen to be feels just right, just so. And that’s the thing. If you don’t want to relate personally with the demented—cool. Your choice to make. If you don’t want to think about them, much less live with them, you don’t have to.
You don’t have to right now. But maybe you should start considering what that might be like. Because, according to the numbers, it’s looking more and more likely that you will become either a caregiver or care receiver. Possibly both. In either case, relationships will wither, selves will go to seed, and you will find yourself alone with an invalid. Your story won’t be yours to tell anymore. You might come to think of your autonomy, your sovereignty, your very self as a figment of your imagination.
In the early hours of the morning, the old man wakes, certain that he has forgotten something. He walks into the bathroom and is puzzled by the new tiling and fixtures. He looks around, vaguely recognizing the space and its utility. He can’t remember why he’s come. He examines the many objects next to the sink. He picks up a green-handled thing with prickle thingies, squeezes a gooey something onto it. He looks into the mirror and is frozen with horror.
In place of a youngish man, thin-lipped and clear-eyed, he sees some wretched human ruin mimicking his every expression. It seems to be mocking him, his confused panic. Both the young man and the old one cry out.
Next thing he knows, his correct reflection is standing behind this uncanny geezer. He watches as the reflection wraps its arms around him. I’m here, the reflection is saying, holding the old man in place from behind. This reflection catches his eye and smiles.
He cannot comprehend this. And he will carry no memory of it. But in this moment, and for a few afterward, he detects something like a presence. The sort of full-body frisson that is felt only through what it undoes. Like sunshine burnt through cloud. Or the silence that comes after the coda but before the ovation.
Photographs in this article are from Maja Daniels's "Into Oblivion" series, which captures Alzheimer's patients stopped behind the locked doors of their ward.
Kent Russell is a contributing editor at The New Republic.