The Hoarding Syndrome
-- When Clutter Goes Out Of Control

Saving stuff is normal.
Sometimes, though, it can go too far.

Embarrassed and Overwhelmed

As the caseworker from Child Protective Services approached Sue Howard's home last year, she knew something was wrong. Outside the one-story brick house on a quiet, leafy street in Nacogdoches, Texas, a blue dresser stood against one wall. The front porch was crowded with papers, books, an open bag of cat food, toys, a bunch of shoes and several pairs of roller skates. The white steel front door, which had fallen off its hinges, was propped up in the door frame.

Inside the house it was much worse. The entry hall was crammed with a love seat, boxes and so much clothing, the caseworker had to step on it to get to the dark, wood-paneled living room and then the dining area, where piles of papers, books and other objects (including boxes and boxes of past-their-prime Girl Scout Cookies) were stacked on nearly every surface.

This was not the life Sue Howard had imagined in 1988, when she married and joined her husband in satisfying but low-paying church work. Her family had grown at a much faster rate than their modest income. The financial struggle became overwhelming.

About nine years ago, Howard, now 42, began to feel trapped by poverty. "I thought, What can I do? I'll do what my grandma did." From that moment, Howard refused to discard anything she considered potentially useful.

In 2001, when her husband went to graduate school, Howard began selling books online. She took pride in snapping up bargains for her four children and her business at thrift stores, garage sales and Wal-Mart. But those bargains gradually took over the household, adding to the tension of an already troubled marriage. The scuffed kitchen floor was sometimes sticky, and appliances, including the dishwasher and refrigerator, were often on the fritz. Howard was too embarrassed to allow a stranger in to do repairs and too overwhelmed to clean up a home filled with clutter. Every time the doorbell rang, her stomach knotted in fear.

Between 2002 and 2005, caseworkers visited Howard's home at least five times in response to anonymous calls. They gave Howard and her husband time to clean up the property, which they always did. But the visit in May 2006 was different. By then, Howard had separated from her husband and was raising Kelsie, 16, Zachary, 15, Clay, 10, and Ben, 8, on her own for almost a year and a half. The clutter was getting worse -- and potentially dangerous. The caseworker told Howard to move the children to their father's apartment.

Dangerous Compulsion

Saving stuff, in moderation, is usually considered normal. But this otherwise healthy impulse can go too far and develop into what some experts consider a clinical obsessive-compulsive disorder. Compulsive hoarding can't be chalked up to eccentricity or a character flaw. It's more serious and harder to control than that. "This is not laziness, criminal negligence or failure to attend to the responsibilities of life," explains Sanjaya Saxena, MD, director of the Obsessive-Compulsive Disorders Program at the University of California, San Diego. "It is, in fact, a neuropsychiatric disorder that will not get better unless the person is treated."

And it can lead to tragic consequences. One of the most famous cases involved the wealthy and reclusive Collyer brothers. In 1947, their bodies were discovered in a crumbling New York City mansion packed with more than 100 tons of junk. Last year, a resident of Shelton, Washington, was smothered when a massive pile of clothes toppled on her. And a few fatal fires have even made headlines. Hoarders tend to fill their homes with flammable material and often block hallways and exits in the process, which can make escaping a fire impossible.

Hoarding can affect people of all ages and backgrounds. As many as three million to six million Americans may be afflicted at some level, and Saxena warns that hoarding often requires extensive treatment. But many deny that they have too much stuff or that the clutter is a problem. And even those who seek treatment can't always find or afford the currently recommended approach: cognitive-behavioral therapy (sometimes paired with medication) from a specialist.

And it's a myth that hoarders keep only junk. Like the rest of us, they may save things that are beautiful, useful or have sentimental value, say national experts Gail Steketee, PhD, professor and acting dean at the School of Social Work at Boston University, and Randy O. Frost, PhD, a psychologist at Smith College. The difference is that hoarders often find beauty, utility and meaning where others don't.

Most people, for example, can recycle an old newspaper without a second thought. But a hoarder who saves old newspapers may see an archive of valuable, potentially life-changing information. From that perspective, discarding a newspaper is wasteful, foolish, perhaps even a personal failure. And so this clinical disorder transforms the everyday act of throwing away an object into a deeply wrenching, personal violation. Organization is also a nightmare. Steketee and Frost say that compulsive hoarders usually have trouble categorizing items, find it difficult to make decisions, and worry that objects not in sight will be forgotten. They might leave clothes on top of a bureau, for example, instead of putting them in drawers. Over time, a few items piled here and there grow into mountains of dangerous clutter.

How dangerous? The dust, mildew, mold and rodent droppings commonly found in extreme clutter can irritate allergies or lead to headaches or respiratory problems like asthma for hoarders and their families. In some cases, home maintenance suffers, so individuals may endure freezing winters without heat and sweltering summers with no air conditioning. Clutter also places hoarders and their families, especially the elderly, at high risk of injuring themselves in a fall.

Extreme hoarding endangers not only the residents but also neighbors and firefighters, who face greater risk of injury and death when battling clutter-fed flames. It can become a financial threat to communities as well. Making a hoarder's home safe and habitable can be staggeringly expensive, and hoarders can't always pick up that tab. One year, the health department of a small town spent approximately 75 percent of the community's entire budget on cleaning out a hoarder's home, according to Frost. A mere 18 months later, "the home was back the way it was before."

How the Family Suffers

Family members often feel angry and resentful about a hoarder's seemingly inexplicable behavior. They also feel trapped. Forcible cleanups are risky, but so is honoring a hoarder's wishes to be left alone. Relatives often try to sort through a hoard secretly or without permission. That's "a very bad idea," according to Fugen Neziroglu, PhD, co-author of Overcoming Compulsive Hoarding and clinical director of the Bio-Behavioral Institute of Great Neck, New York.

Neziroglu encourages family members to take a different approach and confront hoarders about the problem with the help of an experienced therapist. Experts like her caution that disposing of a person's belongings without permission can lead to trauma or worse. But relatives say they don't always have a choice.

"The constant refrain we hear from professionals is 'If they aren't a danger to others, then they have a right to live how they want,' " says Donna Austin, who founded the Children of Hoarders online support group (childrenofhoarders.com). "When an aging parent runs the daily risk of slipping on glossy magazines on the floor and breaking a hip, or lives in an extreme fire hazard, it's not so easy to stand by and do nothing."

It's not so easy to help either. By the time Eugenia Lester's children stepped in, the 60-year-old former businesswoman was sleeping in the yard of her Southern California home. Piles of stuff blocked every door of the pale stucco residence, which could be entered only through a window. Unhappy neighbors had circulated a petition to force Lester out of the area, and she was in and out of court for failing to clean up the property, according to her daughter Cynthia, a 28-year-old filmmaker in New York. Even as rats rooted through refuse in the uninhabitable home, Lester was unable or unwilling to acknowledge the physical and legal dangers she faced.

Son Brian, 25, says cleaning out his mother's home was like working at a landfill. "Everything inside was rotted and mildewed," he says. "It looked like the city dump. There was stuff piled up about four feet high -- trash, pictures, clothes, newspapers." Household leaks meant the bottom layer was wet; the entire house stank.

Cynthia's upcoming documentary, My Mother's Garden, records the long, painful process of separating Lester from most of her possessions during the summer and fall of 2005. It took Lester's children about eight weeks and some $20,000 simply to empty the place. Lester's disorder made her anything but grateful when she returned home after the cleanup. "I hate you people; you robbed me," she shouted, then started weeping. A few weeks later, Lester was so depressed and suicidal that she needed emergency care.

More than a year after the painful intervention, Lester seems to be doing much better in a board-and-care facility. "I think our family and my mother are in a much better space," Cynthia says. "We are closer and happier." But Cynthia is still trying to arrange appropriate treatment for her mother's disorder.

Steketee says hoarders and their families pay a toll for interventions. "Whichever family members carry the stick are going to pay for that in terms of the relationship," she says. The Lester family was no exception. Cynthia says her mother may never forgive her for the forced cleanup.

Clearing a clutter-ridden home is so stressful that family members are often tempted to simply trash everything, which adds to the hoarder's distress. Experienced organizers, while they can't treat the problem, can help preserve family relationships and do more than fill dumpsters. New York City-based Bergfeld's Estate Clearance Service, for example, has uncovered valuable jewelry, musical instruments and historically important documents for clients, who sometimes mix treasures with trash.

Not Cured but Under Control