Editor’s note: This story was published July 6, 2004, in The Patriot Ledger.
Lisa, a Weymouth resident, lives in a material world. But she’s a material girl with a difference: nothing ever gets thrown away. Instead, she blazes trails through mountains of stuff in her jam-packed place. “The entryway can usually look OK, but then once you’re in, forget it,” Lisa said. “I don’t go through my mail, it’s everywhere,” she said. Books and magazines have taken over, along with “practical” items like food and clothes.
Her mother tries to help. “We’ll be hanging up clothes, and there’s tags and tags and tags,” said Lisa. She uses her bedroom as a “walk-in closet,” sleeps on a futon in the living room instead, and eats out often; there’s no room for a meal anywhere. Lisa admits she doesn’t “use any space for its real purpose,” and rents two storage units for stuff she doesn’t want or can’t part with yet.
Comedian George Carlin claims “life is all about trying to find a place for your stuff.” But when clutter morphs into compulsive hoarding, it’s no joke. Though most people have some clutter, for others, like Lisa, it’s a titanic struggle to toss out stuff that seems worthless to everyone else. “Nobody knows this about me,” said Lisa. “I think, for me, it just feels like, when I sit here, I’m not sitting in something that’s a mess. I know it’s my secret stuff.”
A hoarder “is not some oddball freak out there,” according to the clutterworkshop.com’s Beth Johnson, a “clutter coach,” who runs “de-cluttering” workshops and counsels hoarders and their families by E-mail and phone.
“If you look deeply within in your own life, you’ll find somewhere where there’s something that for sentimental reasons, for the ‘what if I need it reasons?’ that you’re hanging on to. This is greatly magnified in some of the extreme cases, but it’s along a spectrum, it isn’t this freakish abnormality.”
Johnson considers compulsive hoarding America’s “hidden epidemic.” Since many hoarders isolate themselves from the outside world, hiding their habits from family and friends, researchers can only estimate the extent of the problem.
Most agree that hoarding is one of several symptoms of obsessive-compulsive disorder (OCD). The Obsessive-Compulsive Foundation web site defines OCD as reoccurring thoughts or impulses (obsessions) that people try to stop by performing certain rituals over and over again (compulsions).
Hoarders who collect objects have three main problems, according to Randy Frost, a psychology professor at Smith College who studies hoarding. They can’t stop themselves from buying or acquiring free items, they don’t get rid of stuff, and, most important, they have trouble organizing what they have.
Animal hoarders, by contrast, keep large numbers of animals (usually cats or dogs) in miserable conditions. Like objects, the animals are part of the hoarder’s “identity,” which makes “getting rid of them very difficult,” said Frost. Last year, two animal cruelty cases in Boston and Taunton, involving sick and dead cats in filthy dwellings, made headlines.
Once consigned to news of the weird, hoarding is slowly showing up on community radar screens.
Quincy’s Health Department handled at least six cases involving compulsive hoarding last year. (No serious animal hoarding has been discovered yet.)
The small number of cases is deceptive. “These are definitely the toughest cases that we’ve had to deal with over the years, and you remember just about every one of them, because it’s not something that within 14 days, the violations are corrected and it’s ‘case closed.’ These literally go on for years,” said Chief Sanitarian Cynthia DeCristofaro.
How does one person’s problem become a community issue? “We can get involved in a couple of different ways,” said DeCristofaro. “Probably the most common is if emergency services, ambulance and/or police or fire respond to a medical condition or a fire condition.” They arrive on scene to deal with the emergency, discover the hoarding behavior and ask the Health Department to get involved.
Tackling hoarding cases often demands the resources of multiple departments. In addition to the health, police and fire departments, some towns and cities bring together elder, housing and other social service agencies to tackle hoarding cases.
“That’s actually what it typically takes, is that somebody in the community just can’t stand it anymore, and gets active, and pulls people in,” said Gail Steketee, a hoarding researcher and anxiety disorders specialist at Boston University’s School of Social Work.
Statewide, Hampden and Hampshire counties have set up hoarding task forces. Groups also operate in New York; Seattle, Wash.; Fairfax County, Va.; and Dane County, Wis.
Quincy doesn’t have a hoarding task force, DeCristofaro said, but the city has laid a “pretty good groundwork” to identify the key players. But hurdles remain. “We don’t have the right to go onto property without the permission of the occupant,” said DeCristofaro. “Sometimes we are allowed entry. A lot of times we are not,” she added. When officials do get inside, their response depends on the severity of the problem.
Some cases are tragic. Several years ago, the health and building departments helped one hoarder clean up and repair his single-family home. “In less than five years, the house was completely filled again and the gentleman ended up falling and dying in the clutter,” said DeCristofaro.
Other situations have more positive outlooks. Recently, a hoarder caused a small fire in a home. Warned that no one would have to know, if steps were taken to clean up, the individual agreed to de-clutter. The department makes progress checks every one to two weeks.
But not everyone is so cooperative. One issue DeCristofaro often confronts with elders is the “right to self-determination” – the right to refuse help.
Hoarding by seniors is a hot issue, according to Thomas Clasby Jr., director of Quincy’s Council on Aging. A talk on hoarding last fall, co-sponsored by the Council on Aging and the Health Department, attracted nearly 100 people. “It was probably the most popular topic that we’ve had over the last couple of years,” said Clasby.
One popular misconception about elders and hoarding is that collecting is rooted in Depression-era poverty. But researchers have not found any links between economic deprivation and hoarding, which affects people at every income level.
Although hoarding may begin in childhood or adolescence, it becomes more serious as a person ages and loses mobility.
Mary Ann of Abington grapples with senior hoarding firsthand. Her mother, who also lives on the South Shore, has crammed nearly every corner of a large home with all types of things including boxes, carryout trays and disposable coffee cups.
“I would say the situation is overwhelming,” she said. “Anything recyclable gets washed and saved.”
As for her mother’s bed, Mary Ann thinks “she must have to clear it off to get in it.” Most rooms are inaccessible. The front entry hallway and staircase to the upper floors are clutter-choked alleyways.
“It’s almost like she doesn’t even see it,” Mary Ann said. A clear-out attempt was a “disastrous” failure, with her mother accusing her of “taking her things.”
Mary Ann’s biggest fears? A fire or “someone saying you can’t live here, you can’t live like this.”
“It’s like dealing with an alcoholic; they will not admit they have a problem,” Mary Ann added.
“Denial is a very big piece of hoarding, and that’s also why it’s so difficult to communicate, acknowledge, talk about,” agreed Elizabeth Burden, a geriatric clinical social worker at Boston’s Lemuel Shattuck Hospital.
Even if elderly hoarders recognize they have a problem, there are no quick fixes, according to South Shore Elder Service’s Tze Stern, a protective services supervisor who investigates hoarding cases. It can take one to two years before there are signs of improvement.
“The success will be, the elder agrees to clear out an ‘escape route’ for themselves from the bedroom to the kitchen, then to the front door, in case something happens, so the EMT (emergency medical technician) can go and help them,” said Stern. But despite their best efforts, not everyone can be helped, she added. One elderly apartment dweller refused to change her ways and became homeless.
Frost believes a cooperative approach, establishing trust between the individual and a social service provider, housing manager or other public official is important. “I think that’s probably the biggest factor in whether a case has a relatively successful outcome,” he said.
According to Johnson, hoarders need to work toward understanding their condition, while authorities must balance public safety concerns with mental health issues.
Hoarders are not able to easily control their behavior, and forced interventions are only a temporary stopgap measure that does not address deeper problems. A hoarder distressed by his or her losses may start collecting all over again.
Wanting to end her hoarding ways, Lisa is looking for help.
“I need someone who is going to be more sympathetic and compassionate about getting rid of things,” she said. “But I am definitely ready to do something.”
Hoarding help
For more information about compulsive hoarding, go to:
The Obsessive-Compulsive Foundation’s Hoarding web site: http://www.ocfoundation.org /1005/index.html
Center for Anxiety and Related Disorders (CARD) at Boston University: http://www.bu.edu/anxiety/ or call 617-353-9610
The Clutter Workshop: http://www.clutterworkshop.com
