The 64-year-old widow lives in a seemingly well-kept duplex, with a clean covered porch, in a densely populated neighborhood in Biddeford.
From the outside, there is no indication that behind those walls and the delicate white lace curtains lives a hoarder.
But inside, nearly every room – from the attic to the basement – is filled with piles and boxes of stuff.
A few steps from the cluttered kitchen, the den is accessible only by a foot-wide path through the boxes and piles. There is an old record player, with cassette tapes piled around; stacks of mail; an old Schwinn exercise bike covered in clothes; and lots of books and magazines, including Better Homes and Gardens from 1982.
“I hate to throw things away,” said the widow, who was embarrassed and agreed to let a reporter into her home as long as her name was not published and no photos were taken.
One entry to the living room is blocked with a 3-foot-tall stack of boxes and other items. She says the room has two couches and a recliner, but all that’s visible is a sea of stuff, including a copy of the Portland Press Herald from 1964, many dolls and other trinkets.
“I used to sit in the recliner and watch TV, but I can’t do that anymore,” she said.
The woman is among a growing number of people who are identifying themselves as hoarders – people suffering from a psychological disorder that was formally listed last year by the American Psychiatric Association, a move that will likely lead to more research, understanding and treatment.
Hoarding has been exploited as TV entertainment, but it increasingly concerns public safety officials, especially EMTs and firefighters. Severe cases of hoarding are most often found among the elderly. Efforts are underway throughout Maine to increase awareness about the disorder through task forces and effective, sensitive interventions. York and Penobscot counties have followed Greater Portland’s lead in creating task forces within the last year, and support groups in southern Maine are in increasing demand.
A MENTAL DISORDER WITHOUT A CURE
Hoarding, a psychological disorder related to obsessive-compulsive disorder, is the compulsive acquisition of things and the inability to get rid of them. Possessions fill up and clutter areas of a home and/or a workplace so that those spaces cannot be used for their original purpose. It is a chronic and progressive disorder, meaning there is no cure and it gets worse with age. It often fractures relationships.
“It does not need to be cleaned up. It doesn’t go away and there is no pill for it,” said Eric Grainger, a hoarding specialist at the Shalom House in Portland.
The Biddeford widow said she began hoarding when she cleaned out a deceased friend’s estate. It continued when another friend died, and peaked when her mother died and she acquired many sentimental objects.
While the value of hoarded items may not be obvious to an outsider, Grainger said a hoarder attaches an essence to an object, oftentimes a memory. Other times, they think the object will be used at a later date.
Grainger said hoarders don’t always see their accumulation of stuff as a problem. Instead, they’re more apt to believe they are unorganized, he said.
With severe hoarding, piles of stuff can reach to the ceiling, so people isolate themselves at home and don’t let anyone inside – not even family members or plumbers to fix leaky pipes, he said.
Isolation, depression and an intense desire for privacy are common among most people with the disorder. The Portland Press Herald was repeatedly turned down when seeking interviews or photos of hoarders in their homes.
“There are a lot of people who struggle with this and no one sees them,” Grainger said. “These folks are extremely isolated.”
MAINE MAY HAVE HIGH HOARDER RATE
Up to 5 percent of Americans struggle with hoarding, according to national estimates.
“It’s much more frequent than we originally thought,” said Randy Frost, a leading hoarding researcher and a psychology professor at Smith College in Massachusetts. “Whether it’s growing or not isn’t quite clear because we don’t have comparable figures.”
However, Grainger estimates that a higher percentage of Mainers hoard – as much as 8 percent – because it is most common among the elderly.
Maine’s median age, 43.5 years, is the highest in the United States, in part because the state also has a dwindling younger population, according to the U.S. Census. The state’s proportion of people age 65 and older, 17 percent, is second only to Florida’s 18.2 percent.
Maine has the nation’s highest proportion of baby boomers – 29 percent of its 1.3 million residents were born between 1946 and 1964 – and they’re turning 65 at a rate of 18,250 a year, according to AARP Maine. By 2030, about 25 percent of Mainers will be 65 or older.
“Because of the population aging and people are staying home and aging in place, we will see more and more of this” hoarding, said Linda Weare, the director of Portland’s Office of Elder Affairs.
Frost, the editor of the International OCD Foundation’s Hoarding Center website and co-auther of two books about hoarding, said the disorder can be partly attributed to genetics. That may well be true in the case of the Biddeford widow, who said her mother was also a hoarder.
Although the severity of the disorder increases with age, symptoms can show themselves as early as age 3 or 4, typically when a child exhibits an unusual emotional attachment to objects and gets upset when a parent touches or throws away those objects, Frost said.
Tough love tactics don’t usually work for hoarders. City-ordered, forced cleanups have resulted in hospitalizations, relapses and even suicides, he said.
TASK FORCES DOING LOCAL RESEARCH
The formation of task forces to educate people about hoarding is a growing trend, Frost said. There are now more than 100 hoarding task forces in the U.S., including 30 or more in Massachusetts, where much of the research has been done since the 1990s.
There are three task forces in Maine – in Greater Portland, York County and Bangor. And researchers from the University of New England and the University of Southern Maine are studying hoarding.
UNE researcher Tom McGlaughlin said the team recently surveyed 171 public housing officials, landlords and some mental health officials throughout the state. Most said hoarding was a problem.
In the past year, 24 hoarders were evicted and another 52 people were threatened with evictions, he said. Landlords estimated it cost about $8,500 in legal and cleanup costs to evict a hoarder, he said.
“I was surprised by how big the problem appears to be,” McGlaughlin said. “I don’t think we know what the extent of it is because we haven’t delved into it yet.”
McGlaughlin said he will interview housing officials, code officers, social workers, first responders, property managers, health officers and others to gain a better understanding. A final report could be issued by June, he said.
MANAGING A DELICATE SITUATION
When confronting hoarding, municipalities walk a fine line between a person’s privacy and maintaining public health, according to Portland code officers.
In the past two years, code officers responded to about 10 cases of severe hoarding – most involving someone over the age of 60.
“It’s definitely increased over the years,” said Tammy Munson, Portland’s inspections director. “When they fill up the inside, it will start spilling outside. It’s at a crisis point when we get involved.”
Portland has a hoarding response team, Munson said, that strives for voluntary compliance to make a home safe. If that fails, the city drafts a notice of violation, which can ultimately lead to court action, she said.
“Luckily we don’t typically have to do that, because we’re able to talk our way into the door,” Munson said. “Our goal is to work with these people.”
Landlords also walk a fine line, Grainger said. They want to protect their property from damage, but they must also provide “reasonable accommodations” to hoarders, he said.
Katherine McGovern, an attorney at Pine Tree Legal Services, which works with low-income people, said she has handled a handful of hoarding cases since 2004. In most cases, she can work out an agreement between the tenant and the landlord. Persuading landlords to provide a “reasonable accommodation” is easier now that hoarding is recognized as its own psychological disorder, McGovern said, but the tenant must admit to having a hoarding problem, she said.
“Sometimes a person is not able to recognize it is a problem, so it’s very difficult to work out a resolution,” she said.
PERSONAL AND PUBLIC SAFETY HAZARD
As an emergency medical technician for the city of Portland, Meagan Letellier has seen some severe cases of hoarding.
Letellier was recently called to the hoarded home of an old woman, who was in a recliner covered in feces, urine and bed bugs. The large, old house was filled with 6-foot-high piles of newspapers, books, trash, food and clothes, with only small paths to get from one room to another. The smell of ammonia was strong. Containers of kerosene were in the kitchen.
“From the outside you wouldn’t even know,” she said. EMTs had to widen the paths to remove the woman from the home and take her to the hospital.
In North Deering, a woman was overdosing in a room off a hoarded basement. EMTs had to take the door off its hinges to gain entry. All the while, the woman was unresponsive and barely breathing.
“It really does delay medical attention in the event they are having a true emergency,” Letellier said.
A month ago, Letellier was called to a high-rise where the resident was having a medical emergency. The bedroom was filled with so many clothes and other items that the woman could not get into the bathroom. A full ashtray was on the urine- and feces-soaked bed, where there was an oxygen tank nearby.
“Her apartment was as volatile as I have seen in a while,” she said.
Those are the types of conditions that can keep firefighters awake at night.
A fire department in Melbourne, Australia, studied the additional fire risks associated with hoarding over a 10-year period. They found that hoarders were involved in only 0.25 percent of the fires, yet 24 percent of those fires were fatal. Only 26 percent of hoarders had working fire alarms, compared with 66 percent of non-hoarding households. And only 40 percent of hoarding fires were contained to the room of origin, compared with 90 percent in normal residential fires.
Portland fire Lt. Jon Hendricks said hoarding delayed the firefighters’ search to clear a recent house fire on Irving Street by a minute or two. One entrance was engulfed in flames. The front door was blocked by stuff, including a liner for a pickup truck bed, he said.
Firefighters formed a line to remove the items so they could search the house, Hendricks said. Additional clutter increased the fuel load of the fire, creating thick, black smoke, he said.
“It was confusing to see what we were dealing with,” Hendricks said. “It’s definitely a hazard on all fronts.”
SUPPORT GROUPS PROVIDE HELP
Help for hoarding is getting easier in Portland because of the efforts of Grainger, the Shalom House specialist.
The Greater Portland Hoarding Task Force was formed in January 2012. The group facilitates workshops to increase awareness about hoarding. On March 18, Grainger provided a “Hoarding 101” workshop for city staff at the Barron Center.
Grainger also hosts a hoarding support group for about 12 people that meets bimonthly in Portland. Due to demand, a second support group is being planned, he said.
Bangor launched its own hoarding task force last fall.
After launching a task force in March, York County is planning a support group.
Grainger said hoarders prefer support groups over more clinical forms of therapy.
“People are free to be themselves – without judgment – with people who really get what they are going through on a regular basis,” Grainger said.
About 35 hoarders in Greater Portland are currently receiving in-home visits from volunteers who try to help them organize and clean up their homes.
The Biddeford widow looks forward to the weekly visits with her volunteer.
She proudly shows off a kitchen cupboard that is neatly organized and has shelf space for additional canned goods. She points to corners of the kitchen, and an area below the table, that once had piles of stuff but are now clear.
“I want her to see progress,” she said, noting that she looks forward to being able to invite people into her home. “To throw things away before made me really anxious, but now I really want a normal home. I have to let things go.”
She adds: “I believe in the power of prayer. God is a God of order. It’s not his will that I have a messy house.”
Randy Billings can be contacted at 791-6346 or at: