For Hoarders, Letting Go Is Nearly Impossible

Nearly every square inch of the rug in Patricia Edwards’ living room and virtually every surface--chairs, coffee table, love seat, piano--is covered with heaps of stuff. There are so many piles of junk mail, sheets of crumpled wrapping paper, 5-year-old newspapers still in their plastic sleeves, broken electric toothbrushes, stained brown grocery bags, yellowing receipts, old shopping lists--that it’s hard to open the front door that overlooks a tree-lined side street in Bethesda, Md. The only place to sit is a white leather sofa reachable by a narrow path through the clutter. A thick layer of dust blankets the room, which hasn’t been cleaned in 11 years.

The small kitchen is nearly impassable, its floor covered with ankle-deep piles of trash. Dirty dishes and empty deli containers are heaped in the sink, obscuring the faucet. The stove and the counters disappeared from view long ago, buried under a foot of papers, bottles and other debris.

A narrow pathway around a 5-foot-high stack of old phone books and past guest rooms too packed to enter leads to Edwards’ tiny bedroom. The sheets on Edwards’ king-size bed have not been changed in at least four months: There’s simply too much junk piled on it. She sleeps on a 3-foot swath closest to the bathroom.

The surreal condition of Edwards’ four-bedroom rambler is a reflection of her psychological malady, not her deficits as a housekeeper. Edwards is a hoarder, and her problem, which began in childhood, is imperiling her health, jeopardizing her relationships with family and friends, and making it impossible for her to lead a normal life.

She knows that most people, including her grown children, to whom she is close, don’t understand why she saves almost everything or why she becomes acutely anxious at the prospect of throwing out things others discard without a second thought: junk mail, an empty Kleenex box, decades worth of church programs.

“Discarding anything is a problem,” said Edwards, who does throw out smelly refuse, like banana peels. “People look at this mess and think, ‘How could anybody let this happen?’ I look around and I think, ‘Oh, my God.’ I know in my head that I don’t need any of it, but I just can’t bring myself to throw it away.”

At 70, Edwards, a gregarious, energetic, intelligent woman who sports fresh lipstick, clean clothes and well-tended nails, seems the embodiment of the term “active senior.” She is involved in several community groups, ushers at church, travels regularly, works part-time as a real estate agent and has many friendships, some of which go back nearly 50 years to her undergraduate days at Wellesley College in Massachusetts.

But her hoarding, for which she has several times received therapy that proved ineffective, is getting worse.

A Mental and Public Health Problem

Hoarding, a little-understood psychological malady, is not new--historical accounts of it date to ancient Egypt--but it is newly recognized as both a mental-health issue and a public-health problem.

While many people think of a hoarder as someone who obsessively collects and neatly categorizes thousands of similar objects--shoes, matchbooks, record albums--the reality is vastly different, experts say. Most hoarders more closely resemble pack rats, and their “collections,” often of junk, are neither neat nor categorized, as would be those of a compulsive collector.

In the annals of hoarding, the Collyer brothers, two eccentric recluses who were found dead in their Manhattan brownstone in 1947, are legendary.

The tabloid press chronicled the discovery of their bodies and the excavation of their house, which contained 136 tons of junk. Among the things police found were 14 grand pianos, the chassis of a model T Ford and medical specimens from their father’s gynecology practice. A network of tunnels had been carved out of the debris and, fearful of intruders, the elderly men had rigged booby traps of trash, one of which triggered accidentally, entombing them.

Because hoarding is seen in a variety of illnesses, including schizophrenia, dementia, anorexia, substance abuse and mental retardation, it has been difficult to place definitively in a diagnostic category.

A growing number of experts believe it is a sub-type of obsessive-compulsive disorder. OCD affects an estimated 2 million Americans, although most OCD sufferers display more common symptoms such as compulsive hand-washing. Between 10% and 20% of hoarders report no other symptoms of OCD.

Experts who study hoarding say the problem is hugely underreported--it is estimated that only about 5% of cases come to the attention of authorities--and rarely becomes known to outsiders until it is so severe that a person is facing eviction, a competency hearing or action by a local health department.

Like Edwards, many hoarders are over 65. Most experts believe that age-related illnesses are not the primary cause of hoarding but that the problem typically begins in childhood or adolescence. Hoarding is more likely to be a problem for the elderly because older people are less able to manage their “collections” and are more likely to arouse the attention of public mental health, housing or fire departments.

“With the aging of the population and a greater proportion than ever before of people owning their own homes, we expect to see more cases of hoarding over the next 20 years,” said Charles Mansueto, a psychologist who directs the Behavior Therapy Center of Greater Washington.

Exaggerated Response to a Thought

As with other forms of OCD, hoarding “is the result of a catastrophic reaction to a thought,” said Randy O. Frost, a professor of psychology at Smith College in Northampton, Mass., and a pioneering hoarding researcher. “Hoarders are afraid that ‘there is something here that I might lose, something that could change my life if I throw it away.’ And the reaction to that thought is so powerful--the fear of loss or the intense anxiety it provokes so great--that it overrides any other feeling the person might have.”

Hoarding has a strong familial link, although no one knows whether that is the result of genetics or environment or both. A small study published last year by a team of Stanford University psychiatrists found that 80% of hoarders had grown up in a house with someone who hoarded.

Hoarding is extremely difficult to treat, experts say. Antidepressants are effective in treating 70% of OCD cases that involve compulsive hand-washing or other ritualistic behaviors. But they work in only 17% of hoarding cases, although the medications may be effective in treating depression that can accompany hoarding, according to Frost.

Conventional talk therapy has not proved to be effective. The most promising approach appears to be cognitive behavioral therapy, which combines a systematic restructuring of thought processes with practical exercises aimed at reducing clutter.

One of the mysteries is how some hoarders can live what are essentially double lives. They function adequately, and sometimes spectacularly well, at work, said Michael Tompkins, a behavioral therapist in San Francisco. “That may be because they’ve learned to adapt in that environment,” he said. “After all, there are social constraints against hoarding at the office. There are no such constraints at home.”

There are subtle but significant differences between people who have severe hoarding problems and non-hoarders. Hoarders, Tompkins noted, have “a very profound and excessive attachment to things. They tend to regard each item as unique and of equal importance.”

Some hoarders, therapists say, are “specialty” hoarders: They have a passion for certain objects--tools, soda cans, car parts, newspapers or other sources of information. Mansueto has treated a man who hoarded dust bunnies, a physician who hoarded bags of trash in his basement, and a Maryland banker who hoarded Oriental rugs and electronic equipment.

Others are compulsive shoppers. They order large amounts of merchandise from catalogs, EBay or the Home Shopping Network. Still others cruise neighborhoods on trash pickup days, are devotees of yard sales or scrounge through dumpsters.

Like other OCD sufferers, hoarders tend to be perfectionists; many feel a heightened responsibility for things.

“Needless to say, they never find a perfect place to file something, so they just leave it where it is,” Tompkins said. “I have one client who brought bottles home from various recycling bins because he wasn’t sure they would be disposed of properly.”

While hoarding is often apparent by late adolescence, in some cases it is unleashed later in life by a traumatic event, such as death or divorce.

In a marriage, “it’s very hard to maintain the relationship unless both are hoarders,” said Jonnae Ostrom, a social worker in Orange County. “What we see more often is that one person is the saver and the other is the tosser. But if the tosser leaves, then there’s no one providing balance.”

Twenty-five years ago when Patricia Edwards’ husband left her for a flight attendant he met on a business trip, she sank into a crushing depression. Housework was the first thing she let slide: Her children were about to leave home for college and she was suddenly alone a lot.

“My ex-husband was a very orderly, well-organized person,” she recalled. “There were a lot of things I would have saved that he saw no need to keep.”

Once he was gone, Edwards, who has even kept paper dolls from her childhood, began filling up her house. “I just didn’t care as much,” said Edwards, whose father and aunt were hoarders. “At the time I just thought I was a messy housekeeper and that I’d rather be doing other things.”

The amount of clutter in her house makes it hard to move and impossible to get anything fixed, adding to the overpowering disarray.

Most of what she saves seems inexplicable, such as a 6-month-old brochure for a house that was for sale.

“I could probably throw that out,” she conceded, noting that the house belonged to a friend of a friend. But Edwards doesn’t toss it: She puts the yellowing sheet back on top of another pile.

Such behavior used to infuriate her son, a Philadelphia venture capitalist who hasn’t been inside his mother’s house in several years because he finds it too upsetting. “I used to say, ‘How can you live like this?’ and all sorts of logical things,” he recalled. “And my mother would say, ‘I really wish I could clean up.’ I now believe she’s really unable to do it, not unwilling. The only time you see her get crazy is when you try to throw her stuff out.”

He long ago stopped sneaking bags filled with trash out of his mother’s house to the dumpster at a nearby high school. He’s become convinced that his mother--and no one else--must decide to clean up.

His older sister, Susan Morris, says she and her brother have argued repeatedly about how best to help their mother. Morris favors shoveling the house out, whether her mother is ready or not. “My attitude is, if she falls and breaks her hip, she’s not going to be able to do anything about it,” Morris said.

Therapy Focuses on Behavior

Cognitive behavioral therapy, regarded as the most promising approach to treating hoarding, is a laborious process. It combines regular “excavation” sessions of limited duration with systematic restructuring of the way a person thinks about clutter. At first, the goals of treatment are specific: to sleep in one’s bed or eat at the kitchen table.

There are inviolable rules. The therapist does not touch a person’s stuff without permission. The patient, who is responsible for deciding what gets pitched, observes what psychologist Frost, who has pioneered the therapy, calls the OHIO rule: Only Handle It Once. That prevents the phenomenon Frost calls “churning,” in which people move stuff from one pile to another without making any progress.

The other key aspect of treatment involves “non-shopping trips” in which the hoarder is taken to favorite acquisition sites--a mall, a dumpster, a yard sale--and helped to overcome the compulsion to acquire through a series of mental exercises.

“The primary goal of treatment is to create and maintain living space rather than emphasizing discarding,” said Frost. “Discarding is what most people who’ve offered to help have proposed. . . . But if you do the clean-out, people don’t learn how to do it themselves” and they lack the motivation and skills necessary for maintenance.

Ask behavioral therapists about the efficacy of this treatment and most acknowledge that lasting success is rare and treatment requires enormous patience. (Imagine spending 30 minutes discussing whether to keep an expired coupon.) Treatment also takes a lot of time; Frost estimates that 12 to 18 months of regular sessions are required to achieve success.

Needless to say, the patient must be highly motivated. That is rare, therapists say, because most hoarders don’t believe they have a problem.

But victory is possible, says Janelle Armstead, 68, of Fullerton. Several years ago she conquered her lifelong hoarding problem with a program devised by social worker Ostrom.

Armstead started by spending five minutes at a time discarding, sorting and organizing, as Ostrom recommended, gradually increasing the length of the sessions. Then Armstead took several major steps: She divorced her husband and moved to a smaller house. The move prompted her to give away 56 boxes of her cherished books to a local hospital. After she moved, she hired a cleaning person and a professional organizer who come to her home regularly.

“I still have a hard time making decisions,” Armstead said, “and I had a huge problem with junk mail. I used to read everything and save it so I could think about it. Now I don’t open it.”

Armstead follows certain rules religiously: Most important, she does not let clutter accumulate. “I know it’s ridiculous,” she said, “but I put signs on tabletops that say things like, ‘This is a flat, clean surface.’ ”

Patricia Edwards has recently started a new behavioral therapy program and is on an antidepressant.

“I was really hoping there would be some new drug or breakthrough,” she said. “If I don’t get instant gratification or success, I get discouraged and quit. This time I’m going to try to be more patient.”