‘They’re going to judge me’: Hoarders confess why it gets worse with age

She is 77 and, by her own account, disorganized and full of ideas for art and gardening projects. Nearly every horizontal surface in her Montgomery County home, including chairs, is covered in stuff. When she cooks, the top of her stove is the only clear prep area.

The retired art teacher is afraid to invite new people to her home. “They’re going to judge me,” she said. Her friends are accepting, but she cleans for a month and a half before she hosts a potluck dinner. In no time, the place is a mess again. It makes her feel hopeless and depressed.

“My two sisters have each asked me to please get the hoarding under control, because they don’t want to have to deal with it after I die,” she said.

She likens hoarding to letting the weeds grow too long in her garden. “If I let the weeds get out of hand, they overcome the flowers and I can’t see the flowers because of the weeds," she said. "That’s what it’s like to be a hoarder or a clutterer. The clutter overwhelms the beautiful things you love so you can’t even see them anymore.” Like others who talked about their hoarding for this story, she declined to use her name because she feels so ashamed of her behavior.

Hoarding is always tough, but the challenges mount as people age. Infirmity can make it even harder to move things out of the house. A lifetime’s worth of acquisitions can get in the way of both downsizing and safely staying at home. People with walkers and canes need clear floors. Patients coming home from surgery need clean rooms. Even for seniors in good health, shame can feed one of the great dangers of aging: loneliness. Cluttered homes can foment family discord at a time when older people most need support.

Hoarding, experts say, is a problem that needs more attention. It affects 3 to 6 percent of Americans, up to 77,000 people in Philadelphia alone. Back-to-back conferences on the issue in Philadelphia and Bala Cynwyd this spring attracted counselors, professional home organizers, family members, and people with hoarding disorder who wondered how to tackle a complex condition that frustrates just about everyone. Landlords and neighbors struggle with the mess, but people have the right to be bad housekeepers — up to a point. Firefighters and paramedics worry that piles of papers could literally become deadly.

» READ MORE: Do you have hoarding disorder?

According to the American Psychiatric Association, people with hoarding disorder feel such a need to keep items that they can’t use rooms for their intended purpose despite negative social consequences. Experts said there’s no proven cause for hoarding behavior, although there is a strong genetic component. It often starts in childhood. Older people who hoard are more likely to have deficits in organizing ability.

Treatment helps, but trained, affordable therapists are in short supply. Funding to develop science-based treatment has not been robust. The condition is most visible in summer, when smells and bugs from squalor draw attention.

“Hoarding is a huge public health problem,” said Greg Chasson, a Chicago-area psychologist who specializes in hoarding disorder and teaches at the Illinois Institute of Technology. He is developing an education and training program for family members of clutterers. “It’s very dangerous for people with hoarding as well as the people who live around them.”

Out of frustration with hoarding-related eviction cases, David Wengert, a social worker in the housing unit of Community Legal Services of Philadelphia, helped organize the Philadelphia Hoarding Task Force, a multidisciplinary group that seeks systemic solutions to a problem that often begs for a team response. The group says forced clean-outs — a common response — don’t work. They traumatize people with hoarding disorder and often result in even more hoarding. Clean-outs focus on the stuff, Wengert said, “and the stuff has nothing to do with it when you get down to it.”

He endorses involving clutterers in decisions and giving them more support. His goal is not perfect order, but “harm reduction,” a public health concept that targets the most dangerous behaviors. In April, the task force began distributing simple safety guidelines that are easier to accept than a complete clean-out, such as making sure that doors can open all the way, clearing three-foot pathways and keeping stuff off the stove.

Thanks to an unusual one-on-one, in-home hoarding treatment program for people age 65 and up offered by Jewish Family and Children’s Service (JFCS) of Greater Philadelphia, the former art teacher says she’s doing better than she was a couple of years ago. Three layers of clutter have been reduced to one. She proudly texts before-and-after pictures of her dining-room table, which now has only a few things on it — but she still feels too much shame to be publicly identified.

JFCS, which works with the hoarding task force, also has a support group based on Buried in Treasures, a popular self-help book on hoarding. It has helped the former teacher find a place where everyone understands her shame and struggle, where empathy is the norm. She doesn’t want to let the group down.

She agonizes less over what to keep and what to discard. "I'm making the decisions faster," she said.

Courtney Owen, director of individual and family services at JFCS, said her agency started the program, now into its second three-year grant, because many of its case managers were stymied by hoarding. The program, which operates in Philadelphia and the Pennsylvania suburbs, has served 75 clients, with 39 active. Twenty-three people are on its waiting list. They face a three- to four-month wait. “The need is much greater than I think what anyone anticipated,” Owen said.

She and Wengert hope health insurers will soon consider more funding for in-home hoarding support.

People rarely seek treatment for the disorder before their 50s and 60s when possessions may finally reach a critical mass. Illness or brain changes associated with aging may further impair people’s ability to manage their possessions. Perhaps a spouse who maintained some control over the chaos died or left, allowing clutter to multiply. If someone with hoarding disorder has surgery, family members and home nurses may have to confront the mess to make it safe for the patient to return home.

A 62-year-old Center City woman, who calls herself a clutterer and is a member of the Philadelphia Hoarding Task Force, said years add things that feel important. Parents die, leaving items that evoke powerful memories. Every crisis triggers new “cascades” of papers: medical bills and information, disability applications, death certificates.

The need to downsize is a common flash point.

Lonnie Beer, a Mount Airy social worker, went through it with her mother, who died in 2011. Before a move to assisted living, Beer’s mother lived in a condo that was “filled to the rafters” with nice things she had bought, piles of magazines, thousands of books, and her own paintings. She navigated her home through narrow “goat walks.”

Her family spent months of weekends sorting the collections. Beer has a “heartbreaking” memory of her mother chasing a truck loaded with her belongings.

Beer wore a face mask while cleaning the condo to protect against the dirt and dog and cat feces. The place made her heart palpitate. “It made me anxious. It made me resentful. It made me angry, because it seemed so obvious,” she said. “You gotta get rid of this. You gotta get rid of that.”

Beer, 61, did not inherit her mother’s cluttering and has vowed not to leave her own children a giant mess.

While many people with hoarding disorder don’t think they have a problem, others are acutely aware people find their habits disgusting. Chasson, who has studied attitudes toward people with hoarding disorder and other mental illnesses, said stigma is indeed higher for hoarding behavior.

"People have been viewing hoarding as a moral issue or a bit of a behavioral choice, " he said. "The perception is, ‘Why aren’t these people making better choices?’ "

» READ MORE: How to help a hoarder set goals and make progress

A 63-year-old East Kensington woman, who would only be identified by her middle name, Sue, thinks she knows what people would think of her home, and it’s a reason, she said, she’s made few friends. Single and disabled by depression, she has almost no family either. Things fill a void she’d prefer to fill with people, but she can handle only five to 10 minutes of cleaning a day before exhaustion sets in. The door to her two-story rowhouse can open only part way. Much of the stuff is loose newspaper she wouldn’t mind parting with. But there also are some unusual flea-market clothes and a stuffed Papa Smurf. “I’ve got to keep him,” she said. “He’s cute.”

She hates looking at the mess. "I can't stand it," she said. "I just hibernate in my bedroom and watch TV all the time." Her bed is an island of order.

A member of both Clutterers Anonymous and the JFCS program, Sue said even doing a few minutes of cleaning is an improvement, but she sometimes feels hopeless. “I guess the older I get, the more I want someone else to do it all for me,” she said, “I don’t want to do it myself.”

A fellow Clutterers Anonymous member, an 81-year-old man who lives in a third-floor walk-up apartment in West Philadelphia, said his weaknesses are travel brochures, maps, scientific articles, and other papers. He has stuff in his apartment, his late mother’s house in Montgomery County, a trailer in the Poconos, and a storage locker at a retirement community in the suburbs that he’s joined. His last piece of property, a crypt next to his late girlfriend’s, is, thankfully, empty.

He said he’s gotten better about cleaning after a few years in Clutterers Anonymous, but it’s hard to find the energy. "As I get more decrepit and older and not feeling so well,” he told his support group recently, “when I get back, I just want to pop in bed and take a nap.”

Terrified of eviction, he hired someone to help clean when his apartment building needed some updates a while back. Because of bedbugs, many of his belongings had to go. He has clear walkways and he cleaned off the top of the stove because his apartment manager said it was a safety hazard. “It really wasn’t,” he insisted.