New Hoarding Task Force helps folks with disorder

VERGENNES — Maureen used to be a social butterfly. She liked to entertain and visit with people.
Until her possessions became so abundant that she closed her door and her life to all but her immediate family.
Clutter became her constant companion. With it came depression. Her mom, who moved in with her a few months ago due to failing health, has added an abundance of clothing and other stuff to the handbags and knick-knacks that Maureen can’t resist and can’t find the strength to discard.
“I really want to be free of this,” she said of the items she and her mom have amassed.
Maureen wishes passersby would think more compassionately about the disheveled property she calls home.
“There’s more to the story than what you see,” she said.
It’s a story touched by hoarding disorder, and one shared by as many as 2,000 other people in Addison County, according to Ellen Repstad (pictured, right), a clinical services coordinator with John Graham Housing & Services in Vergennes. Repstad provides in-home clinical support for acknowledged hoarders willing to accept help so they can keep their lodging.
It’s a story with good and bad endings. The most extreme cases lead to dangerous, unsanitary and unsightly conditions that result in evictions and the condemnation of homes.
The prevalence of hoarding has prompted local social service providers to establish an Addison County Hoarding Task Force, through which officials are exploring new strategies to help people thin out the possessions that have been taking over their lives.
“It’s a long, slow process,” Repstad said of the rehabilitation process for people who fall into the hoarding category. “It’s clinically similar to an eating disorder. It’s something they’ll always struggle with, and you learn skills to maintain and address it. Those skills can be taught and learned. The behavior can be changed, but it takes time.”
Hoarding disorder is a persistent difficulty discarding or parting with possessions — regardless of their actual value — because of a perceived need to save them, according to a definition offered by the Mayo Clinic. A person with hoarding disorder can experience distress at the mere thought of getting rid of their items.
Repstad described it thusly: “When a collection prevents your capacity to use your home in the way it’s intended… If you can’t use your kitchen to cook food, then it’s hitting a clinical level. If you’re using your shower to store boxes, then that’s a problem.”
Classic cases involve countertops, sinks, stoves, desks, stairways and virtually all other surfaces piled with stuff. When there’s no room left inside, the clutter spreads to a garage, vehicles, yard and other storage facilities, task force members noted.
Hoarded items of choice vary from person to person. It can be periodicals, electronics, clocks and/or animals. Whatever the collection, it gets out of hand. Repstad and others who work with hoarders can find possessions stacked to the ceiling and only narrow pathways allowing passage from room to room.
Though Repstad has grown accustomed to seeing household disarray, the hoarding visuals can be jaw dropping.
During the past few years she has been inside several homes piled high with waste and clutter, ranging from magazines to rotting food. In some cases, the resident had maintained only a narrow walking path.
In some cases, the hoarding had devolved into squalor. A person living in squalor is surrounded by filth, brought on by neglect or due to a mental and/or physical disability.
“I’ve seen squalor that was significant,” she said. “I’m working with one woman who has piles (in her home) that are over my head. That’s a real hazard. You can’t get a gurney through those pathways.”
Then there was another case in which the homeowner was meticulous about cleanliness, but had possessions piled high all over the place. Most of the clutter consisted of craft supplies — enough to keep a team of seamstresses busy for a long time.
“There was no dust; I would have eaten off the floors,” Repstad recalled. “It was definitely like a ‘pathway’ situation.’”
She helped a man who had a different collection passion.
“He had a number of trophies and photographs; he definitely fit the classic profile you would envision (of a hoarder),” Repstad said. “Five VCRs he was never going to use, a bunch of TVs. Things he felt were worth money and useful.”
Tragically, hoarding isn’t confined to objects.
Jessica Danyow is executive director of Homeward Bound, the Humane Society of Addison County. The Middlebury-based organization advocates for animal welfare and offers pets for adoption. Danyow and her colleagues are occasionally asked by police to help investigate suspected cases of animal cruelty and neglect. Danyow has become attuned to hoarding cases, as pets are among possessions that many people with the disorder choose to amass.
And that’s usually bad for the pets, the owner, and the neighborhood, according to Danyow, who is pleased the task force founders reached out to her organization.
Danyow recalled a handful of particularly notable animal hoarding cases during her 20-plus years in the animal welfare arena. One of them involved a Hubbardton household in which more than 100 pets were found. In another case, Vermont State Police in October 2017 seized 28 animals from a Ferrisburgh home due to poor living conditions.
Animal hoarders, according to Danyow, usually fit into one of three categories:
•The “overwhelmed caregiver” whose heart is in the right place, but lets their pet population get out of control.
•The “rescuer hoarder” who might be acting altruistically, but is ultimately unable to care for the number of pets collected.
•The “exploiter hoarder” — fortunately uncommon — who shows no empathy or emotion and is indifferent to the suffering of the animals under his or her control.
Hoarding situations, Danyow said, might involve animals housed in crates that are stacked around a home. Or the animals are forced to congregate in a single room, preventing one pet from escaping another, more aggressive pet.
An unpleasant, pungent smell of ammonia is typical for homes in which groups of animals are held with subpar treatment, she added. Danyow recalled visiting one home and seeing guinea pig cages stacked on the kitchen counter. She found around 25 cats in another home, and it took a couple days to catch them all.
While there’s no state law limiting the number of pets one can own, some Vermont communities have local ordinances that cap domestic animal ownership, according to Danyow.
She’s tried to work with people who have animal hoarding problems, but conceded some cases could only be resolved through legal action.
And some of those punished for animal hoarding don’t learn their lesson.
“One of the characteristics of animal hoarding sometimes is that (offenders) just move on and set up shop somewhere else,” Danyow said. “Recidivism is unfortunately very common.”
Many hoarders, according to Repstad, aren’t willing to give outsiders a glimpse of their home. In such cases, it’s difficult to get cooperation for cleanup and counseling for the disorder. Others, like Maureen, recognize they have a problem and are ready for help.
“There is so much shame associated with the disorder,” Repstad said. “They call me because they think if I’ve seen other (hoarding situations), I won’t be as shocked; I won’t go in and say, ‘Oh no, I can’t believe you’re living this way.’”
Fortunately, Maureen’s house is still salvageable.
The same can’t be said for other residents.
“The saddest thing about it is I had a client who was very willing to work with me, to have things removed and trashed,” Repstad recalled. “But the home was a place that really needed to be condemned. You couldn’t rehab it. So even if I could clean out his place somehow, it wouldn’t have affected the mold on the walls or stuff like that.”
The outcome in this case was getting the client placed on a list for subsidized housing.
Repstad sometimes receives referrals from Porter Hospital. She explained a hospital can’t discharge a convalescing patient into an unsafe home environment. That’s when local social service organizations are asked to help find a safe landing spot and support services for patients prone to self-neglect.
While hoarding is a largely a self-inflicted condition, there are often emotional reasons behind it.
“For some, it’s sentimental attachments; for others it’s ‘These are things I or someone else can use,’” Repstad said.
Laura Morse is a housing advocate at Addison Community Action/Champlain Valley Office of Economic Opportunity. Like Repstad, she works with hoarding households to clean up their homes so they can avert eviction. She works with many low-income citizens who reside in subsidized housing.
Morse said hoarding disorder is complicated and those afflicted often possess some or all of the following traits: Separation anxiety, Obsessive Compulsive Disorder, and/or reaction to losses/tragedies in one’s life.
“I worked with a woman who had her children taken from her years ago, and that’s when the hoarding started,” Morse said. “She feels she now has control over what she has in her house.”
Repstad developed her familiarity and interest in the hoarding issue in her previous job as a case manager with the Age Well organization. The disorder disproportionately affects seniors who live alone, though it affects all demographics.
“It’s one of the only disorders that crosses cultural, ethnic and socio-economic barriers,” she said. “There’s no consistency.”
During the course of her time at Age Well, Repstad received training in how to recognize hoarding behavior and help those afflicted. She learned of a hoarding task force in Chittenden County, and audited one of the group’s meetings. She was joined at the meeting by Elizabeth Ready, who was at the time executive director of John Graham Shelter.
She and her colleagues agreed it would be a good idea to establish an Addison County hoarding task force, and they did last year.
“It was a gap in services, and I thought I’d give it a shot,” Repstad said.
Task force members represent such nonprofits as the Champlain Valley Office of Economic Opportunity, Age Well, John Graham Housing & Services, the Agency of Human Services, Homeward Bound and Porter Hospital. All these organizations have had clients, at one time or another, who have hoarded objects and/or pets.
Task Force members meet the last Monday of each month at Homeward Bound to discuss hoarding-related issues and plan outreach to locals afflicted with the disorder.
Repstad recently posted news of the task force on social media. She was pleased her outreach attracted new task force members and three people seeking help with their respective hoarding disorders.
John Graham Housing & Services’ interest in the hoarding phenomenon is directly tied to housing loss prevention. Folks who hoard or live in squalor are at risk of losing their housing. Repstad has unfortunately seen those scenarios play out too many times.
By establishing the task force, advocates hope to steer future tenants away from hoarding tendencies.
“We get people in the (John Graham) shelter space and we see they have these behaviors,” she said. “If I start working with them right away, or get them involved with this task force, we can feel better they’ll be able to maintain a home and not need our services any longer.”
As of last week, Repstad was working with five Addison County households dealing with hoarding or squalor issues. That’s about her limit, time-wise, as she has other duties to perform at John Graham Housing.
“When I work with folks who have collections or who have clutter, I say to them, ‘This is about you and your goals; what is it that you want out of your home?’” she said. “It’s very important that the person who has the collection has control over how the collection is discarded — whether it’s donated or reorganized.”
Like Repstad, Morse works with hoarding households to clean up their acts so they can avert eviction.
“When you’re on some sort of subsidy from the feds or the state, they have a system of inspections every year — or more often, if needed,” Morse said. “People with this disorder have a hard time just cleaning up.”
Sometimes, even the best efforts of professionals like Morse and Repstad are unable to keep hoarder tenants in their apartments. Morse said she’s aware of three households — two families and an elderly woman — that have been evicted from subsidized apartments in Addison County during the past year, due to hoarding.
She sympathizes with the tenants but also understands the challenges for landlords.
“It’s a fire hazard when we close off accesses,” she said. “It’s also about insect control, rodent control, and mold.”
The mold was so bad in one cluttered home that a human services worker got an asthma attack while touring the place, according to Morse.
“It’s also causing health issues with the people who live there,” she noted.
Morse has seen the hoarding impulse so ingrained in some folks that they can’t escape the disorder.
“They have family that come in and empty the place, and then it’s filled again within the next couple of months,” she said.
Advocates at times can detect a hoarding situation without crossing the threshold of the home.
“Lots of times we’ll go by someone’s house and see a lot of the junk outside, and that’s sort of indicative of the fact the house is full,” Morse said. “We have a family with seven vans full of stuff and the house is just pathways (inside).”
It can take several years for someone to beat their hoarding disorder, according to Repstad. The goal for advocates is to get clients to a point where they can independently maintain a clutter-free, safe household.
Repstad wants to supplement the task force with peer groups for those with hoarding disorders and a “Buried in Treasures” workshop this summer. “Buried in Treasures” is a 16-session facilitated workshop that borrows from a book of the same name. The workshop provides tips for people compulsive about saving and acquiring things.
Maureen and her mom are grateful for the help. Repstad and other John Graham Housing & Services staff will be visiting their home in the near future with a truck to sort, discard and donate possessions that are doing them no good.
For Maureen, it began with an online shopping addiction and procrastination. Her mom added to the pile when she moved in. Maureen’s garage is now also full, and she’s got furniture in her backyard.
She called Repstad “a life-saver,” the person who helped her get serious about cleaning out her home. Together, they’ve cleaned out the living room. More rooms will follow.
“There are so many reasons,” she said of her long spiral into clutter. “But don’t immediately judge someone just because they’re messy.”
For more information about the hoarding task force, call Ellen Repstad at 877-2677 or email at [email protected].
Reporter John Flowers is at addisonindependent.com.

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