Can't Just Stop

by Sharon Begley

  Yet collecting is seen as benign, even charming. Neale Albert, a retired attorney, owns more than four thousand miniature books, properly printed and bound yet no more than three inches tall—but sometimes the size of a Chiclet or even a grain of rice. He stores part of his collection in a “cottage” atop his apartment building on Manhattan’s posh Upper East Side, as well as in twenty boxes he keeps in storage. But the collectibles are tiny, his home is spacious, and he is organized.

  Theater and television set designer Eugene Lee collects objects ranging from old typewriters to art deco sprinklers, canes that he displays in a wicker basket, roll-top desks, and hundreds of flea market paintings and silhouettes that fill nearly every square inch of wall space like rare postage stamps crowded onto the pages of a book. His wife, Brooke, collects tin globes made after 1900, her assemblage of two hundred ranging in size from a few inches to a foot in diameter and packed on shelves on the living room walls. The effect is of a disorganized museum, and while certainly not as cluttered or disordered as a hoarder’s rooms, their Georgian mansion in Providence, Rhode Island, is packed to the gills with stuff. “We’re not crazy,” Brooke told the New York Times in 2014.

  * * *

  But hoarding goes beyond collecting in important ways. This compulsive drive to acquire and keep stuff, sometimes including living stuff (animal hoarding is its own separate hell), goes way beyond what you need or use or even remember you have. Hoarders can’t stop purchasing or passively letting stuff enter their lives, and they can’t get rid of what they’ve acquired, not when the belongings have filled their homes, blocked their doors, and forced family members to climb in through a window. Hoarders typically don’t know what they have, buy the same or similar things multiple times, and don’t necessarily use what they’ve accumulated. One purpose of hoarding is just knowing the stuff is there. Many are ashamed of what they’ve done, but not all: to some hoarders, the compulsion to acquire and hold, even to the extreme of a home veined with tiny passageways through stuff, brings comfort and keeps what would otherwise be a throat-gripping anxiety at bay. The most commonly hoarded items are bags, books, paperwork, newspapers, and old clothing.

  Hoarding is also different from out-of-control clutter, which is a manifestation of chronic disorganization or simply not caring about keeping rooms neat. Someone in this predicament would welcome help digging out and getting rid of stuff. A compulsive hoarder, in contrast, would rather you amputate her body parts one by one than ask her, recycling, trash, or Goodwill?

  There are enough compulsive hoarders like Bonnie—in danger of losing their homes or being beyond reach of rescuers in the event of a fire or other disaster—that communities throughout the country are establishing task forces to help hoarders declutter sufficiently to make their homes livable (in the eyes of the community). Either government-sponsored or purely volunteer, the groups typically consist of social workers, therapists, members of the fire department, and representatives of agencies that help the elderly (who are especially prone to hoarding). The first hoarding task force was created in Fairfax City, Virginia, in 1989; by 2007 five task forces were meeting and by 2016 there were twenty-seven in Massachusetts alone and more than one hundred elsewhere in the United States (as well as Canada, Britain, and Australia).

  Exactly how many people are compulsive hoarders is open to question. A 2008 study called the National Comorbidity Survey Replication, which asked some ten thousand adults about their mental health, found that 14 percent had hoarding symptoms at some point in their life. The European version found a lifetime prevalence of just 2.6 percent, however. The experts I spoke to cite the 2008 Hopkins Epidemiology of Personality Disorder Study as probably the closest to the mark. It pegged the percentage of people who are compulsive hoarders at any given time at 5.3 percent. The researchers had psychiatrists interview 735 people to determine whether they met the DSM’s criteria for compulsive hoarding by asking such questions as, “Do you find it almost impossible to throw out worn-out or worthless things? Give me some examples. Is this a problem for you or for others?”

  The Hopkins study also yielded clues to the demographics of hoarding. Hoarding is more than twice as common in men (5.6 percent) as women (2.6 percent), though other research has found that those seeking help are predominantly female, suggesting men are more reluctant to recognize they’re hoarding or to see it as a problem. Widowhood seemed to be a risk factor. And its prevalence increased with age, affecting 2.3 percent of those 34 to 44 but 6.2 percent of those over 55. That likely reflects at least three factors. As time goes on stuff begets stuff, requiring more effort to get rid of it. Also, as we grow older, memories often become more important, and aides-mémoire more critical. More problematic, the forms of cognitive decline that accompany aging also make hoarding more likely.

  As many as 80 percent of people with hoarding disorder also acquire excessively, but the rest are like Bonnie. They don’t buy any more stuff than the rest of us do. They just never throw out a single piece of mail, any magazine or newspaper, or even the boxes and bags and wrappers and containers that the requirements of daily living come in.

  The media, starting with cable television’s Hoarders on A&E and Hoarding: Buried Alive on TLC, feast on hoarders. When I began the research and reporting for this book, I set up a Google alert for “hoarding.” This was not the wisest move. I learned of the unfortunate Connecticut woman who died when the floor of her house collapsed in June 2014 under the weight of “mail, packages, bottles, lots of papers, newspapers, magazines, you name it,” as a police sergeant told reporters. The hoard was “piled to the ceiling in most rooms.” Authorities had to cut a hole into the one-story house and use a backhoe to remove enough clutter to allow them to get in.

  The summer before, St. Paul, Minnesota, firefighters fought to get inside a burning home to save the owner, even enlarging some of the windows and doorways with power saws, only to find him dead inside, surrounded by stuff piled “floor to ceiling,” as the fire marshal put it: books, cereal boxes, knickknacks. That April the body of Alice Klee, sixty-eight, who had been missing for two months, was found in her home in New Milford, New Jersey, under a pile of clothing, blankets, and trash in her bedroom. Her landlord had just received permission from a court to clear out Klee’s apartment because she was months behind in her rent. “Her body was mummified, and the smell was masked by the stench of garbage and unattended cats,” the town police chief told a local online news site.

  These extremes threaten to hide a key aspect of hoarding. Just as one can have compulsions that fall well short of an OCD diagnosis, so the feelings that drive hoarding are present in most of us, particularly our penchant for imbuing certain objects with meaning beyond their objective, intrinsic worth. Dershowitz explained his compulsion to collect Judaica—a Seder plate that the Nazis had confiscated, a Torah frontispiece with Chinese lettering, and more from around the world—this way: “I bought as much as I could just to try to rescue them. Every piece is significant to me.”I If you think you’re immune to that, dig through your cardboard boxes or filing cabinets or other places where you keep “valuables,” and make a pile of things to toss: your college diploma (the school has a record), one of your wedding invitations, your child’s report cards, the book of matches from the restaurant where you had your first date with your spouse (guilty!), the photograph of your parents’ wedding, your sports trophies or your child’s, the Moses basket that your firstborn slept in (also guilty). If we stopped feeling these attachments, surely a facet of our humanity would be missing. Understanding the extreme form of that—hoarding—can shed light on the version that marks us all.

  Hoardings Past

  For a fairly prevalent behavior, and one that had drawn the attention of writers from Dante to Gogol, hoarding essentially flew under the radar of psychology and psychiatry until the 1990s. There was the occasional case report, though far fewer than make the news today. “Psychiatry had little interest in hoarding until about a generation ago
,” psychologist Randy Frost told me when we met at the International OCD Foundation annual meeting in 2013. “It may have to do with the fact that if something falls outside the DSM categories, lots of mental health professionals, even if they see the behavior, don’t conceptualize it as a problem. Instead, they conceptualize it as laziness or sloppiness, and say ‘just stop.’ ” The term “compulsive hoarding” was first used in a 1966 paper that described a single odd case report, with the adjective serving to differentiate normal saving and collecting from the pathological kind.

  Psychiatry’s, and society’s, blind spot to compulsive hoarding as a mental disorder was pretty much the state of play in 1990 when Frost was teaching a twelve-student seminar at Smith College on OCD. One day a student asked about hoarding. “Her mother used to tell her, ‘clean up your room or you’ll wind up like the Collyer brothers,’ ” Frost said.

  Among New Yorkers who grew up in the mid-twentieth century, the Collyer brothers were as well-known as any mayor or president, thanks to a call that New York City police officers responded to on the morning of March 21, 1947. There was “a dead body in the Collyer mansion,” said the caller. Several officers were dispatched to the home at the northwest corner of Fifth Avenue and 128th Street, where Homer Collyer, a lawyer, and his younger brother Langley, an engineer, lived. When the police arrived at the twelve-room, three-story brownstone, piles of newspaper nearly as dense as bricks prevented them from opening the basement door and mountains of junk blocked the front door and even upper-floor windows. A patrolman finally squeezed through a second-floor window, and he found . . . goat paths. They wound through piles of old stoves, books, boxes, bicycles, magazines, papers, potato peelers, the top of a horse-drawn carriage, countless umbrellas, car parts, an early X-ray machine, fourteen pianos, antique buggies, the chassis of a Model T and other detritus that eventually came to more than a hundred tons of possessions, piled from wall to wall and nearly floor to ceiling in every room, basement, and attic.

  Wary of intruders, the brothers had rigged booby traps of debris, one of which had apparently triggered accidentally some days before the policemen’s arrival. After two hours of burrowing through stuff, an officer found the body of the blind, bedridden Homer, sixty-five, first; he had apparently starved to death. Workmen spent eighteen days throwing junk out of windows. On April 8 they found Langley’s body entombed in a junk avalanche. Hoarding had engulfed the brothers and seemed to swallow them whole, taking them from privileged childhoods in a distinguished New York family (their father was a doctor) and successful professional lives to an existence marked by unpaid taxes, mortgage foreclosures, utility shut-offs, and other signs of dysfunctional lives. The house was razed later that year.

  When his student first brought up this story, Frost knew nothing about hoarding as a mental disorder. “It’s a fringe symptom, and there are only a couple of case reports about a paragraph long in the literature,” he told her. “But,” he recalled when we spoke, “I suggested she put a notice in the local newspaper asking for people who had a clutter problem. She did, and we got about a hundred responses.” These volunteers formed the core of his first study. “In interviewing these folks I found them so fascinating it just captivated me and it has ever since,” he said.

  A Classification Conundrum

  That launched Frost on an odyssey that made him a rock star in the world of hoarding. He coauthored the first systematic study in 1993 (other scientific papers had been just case histories of individual hoarders). Titled The Hoarding of Possessions, it defined the behavior as “the acquisition of, and failure to discard, possessions which appear to be useless or of limited value.”

  Before 1996, fewer than ten scientific studies of hoarding had been published. The lack of interest was reflected in how psychiatry classified hoarding. “It was formally listed under obsessive-compulsive personality disorder, but clinicians were told that if it was a severe case you were supposed to consider a diagnosis of obsessive-compulsive disorder,” said psychiatrist Sanjaya Saxena of the University of California, San Diego.

  The scientific basis for that was tenuous, based largely on a partial overlap between hoarding and OCD. About 10 percent to 30 percent of people with OCD also hoard, studies found, while between 12 percent and 20 percent of people with hoarding disorder also have OCD. But people with OCD are less likely to hoard than they are to suffer from major depression, generalized anxiety, social phobia, or attention deficit hyperactivity disorder. Hoarding is only the fourth most frequent symptom of OCD (right before compulsive praying and other forms of scrupulosity), and is much less common than compulsions to wash or check. Psychiatrists knew that “neither obsessive-compulsive disorder nor obsessive-compulsive personality disorder dealt with hoarding very well,” said UCSD’s Saxena.

  Most problematic, a hoarder’s thoughts about discarding or keeping do not feel alien or intrusive, the way the thoughts of people with OCD do. (Remember how Shala Nicely knew with part of her brain that Fred was not in the refrigerator.) Instead, a hoarder’s attachment to possessions, and the deep distress at the prospect of tossing it, feel indistinguishable from a normal stream of consciousness. To a hoarder, thoughts about stuff—keeping it, protecting it, deriving comfort from it—are her stream of consciousness. And, crucially, those thoughts are far from distressing, as the thoughts that drive OCD are (the stove is on, the toilet seat is contaminated). To the contrary. A hoarder like Bonnie derives comfort from seeing her possessions, from thinking about them, from knowing she has them. It is the prospect that she will be forced to throw out belongings, or the practical difficulties of living in such clutter, that causes distress.

  Nevertheless, there was some logic to including hoarding as a form of OCD. The fear of parting with possessions that are personally meaningful (ancient newspaper clippings that remind you of the dreams you dreamed as a young newlywed) or possibly valuable (someone can use these boxes!) is similar to an OCD obsession, while the compulsive keeping seemed like an OCD compulsion. The DSM-III-R, published in 1987, therefore included hoarding in the symptom checklist for obsessive-compulsive personality disorder, and the DSM-IV-TR in 2000 advised that “a diagnosis of obsessive-compulsive disorder should be considered especially when hoarding is extreme.”

  Unfortunately for a profession that prides itself on its scientific underpinnings, when psychiatrists assembling the DSM-5 wrestled with how to classify hoarding, they found “remarkably little empirical evidence to support the inclusion of hoarding as one of the OCPD criteria,” they wrote in a paper describing their work. Listing hoarding with OCD also had problems: when people with OCD hoard, their piles are organized and their stacks are neat, aligned, and quite likely sorted by size, color, or other principle. They are more likely to hoard odd items, imbuing them with a magical quality much like avoiding sidewalk cracks. OCD hoarders may also feel compelled to carry out rituals related to their hoard, such as checking it or counting it. None of that describes true hoarders. The nail in the coffin of hoarding-as-OCD was neuroimaging. “Lo and behold, hoarders didn’t have any overlap with other OCD patients in their brain imaging,” Saxena said. “There are more differences than similarities.”

  The DSM-5 booted hoarding out of OCD and OCPD. “Hoarding disorder” became its own stand-alone mental illness, not a symptom of either. Hoarding had arrived.

  Personality

  Two decades of research since Frost’s seminal 1993 study confirmed the basic profile of hoarders that he introduced:

  • They start to show a compulsion to hoard in childhood or adolescence. Hoarding allows them to feel prepared for every eventuality; maybe Bonnie would get a chance to redecorate her home (miracles do happen), in which case she would have her decorating magazines at hand. Hoarders tend to buy extras because they feel intense anxiety at the thought of being caught without something they need. That makes them carry more “just-in-case” items in their bags, pockets, and cars. Between 60 percent and 80 percent of hoarders also shop or otherw
ise acquire to excess. They keep nine broken old space heaters in case their tenth breaks and can be repaired with a working part from one through nine. They keep umpteen old pairs of unwearable jeans to have denim for patching their “good” pair. They experience a deep sense of comfort from knowing they will never, never be without something they need.

  • They struggle to make decisions and are generally worse than nonhoarders at multiple-choice situations, such as ordering from a menu or picking which movie to see at the multiplex. “They have trouble picking from conflicting options,” Saxena told me. That leaves them unable to choose between this watering can and those seventeen others, unable to decide which of forty-three toothbrushes they’ve hoarded from hotel giveaways they really need and which can be donated to the next charity drive, and unable to sort chin-high piles into “keep,” “donate,” and “toss.” Decision-making is one of the brain’s executive functions, which also include categorizing, sustaining attention on a task such as decluttering, or engaging in complex thinking such as sorting possessions into those that are truly valuable and those that fall short. “We think the difficulty making decisions is tied up with problems processing information,” Frost told me. “It’s way too inefficient: areas of the brain that are highly activated in hoarders are those where decision-making occurs,” suggesting there is a bewildering cacophony of activity in the decision-making circuitry.

  • The very act of deciding triggers in the hoarder an anxiety as psychologically painful as touching public toilets is to someone with the contamination form of OCD. The anxiety is compounded by the fear of throwing away something he should keep. Keeping everything that enters their lives allows hoarders to avoid deciding whether or not to toss something. The result is a landscape of piles that stretch throughout the home, grocery store receipts mixed with car registrations, empty soda bottles with a college diploma, yellowing newspapers with a wedding ring, spanking-new boots with crushed mud-encrusted flats from 1987.