June 15, 2016
Sarah sits on a couch in her North Philadelphia rowhome. Her 2-year-old grandson is nestled in her arms, sound asleep. It’s everything she can do to keep the tears rolling down her cheeks from falling onto his face as she talks about the challenges she’s faced daily for decades.
The living room is presentable, but that’s a façade. Sarah is a hoarder, just like her mother before her. The home she now shares with two daughters and two grandchildren is managed by the Philadelphia Housing Authority. As such, the property has to be clean – and safe – lest she risk eviction.
She’s on thin ice with that. If another monthly inspection goes wrong, her family will need to find new shelter. That’s something they cannot afford; hence, the clean living room on this recent afternoon.
"Explaining how you can't throw out stuff that you know you don't need, can't explain why you want it, it's completely in the way in your house, it's difficult," she says. "I think I'd rather be oblivious, not knowing that what I'm doing makes no sense. It makes you feel kind of stupid, that you should be able to let this go. You're a reasonable person: What is the purpose? Except that it's mine."
In many ways, Sarah – whose last name has been withheld to protect her anonymity – is a case study in why the Philadelphia Hoarding Task Force came into existence three years ago.
The coalition of roughly 25 agencies “seeks to improve outcomes for people who hoard and reduce the catastrophic consequences related to hoarding for residents of the City of Philadelphia.”
“When I came back home, all my stuff was outside in the trash. I started to go through the bags, but I had to stop myself because it’s like ‘What are people going to think if they see you going through the trash? You can’t go through the trash. You can’t go through the trash.’” – Sarah, hoarder from North Philadelphia
They’ve estimated that anywhere from two to five percent of the population suffers from some variety of hoarding disorder. Slated to assist up to 20 people in the first year of the Hoarding Intervention Project, which started in October 2015, the task force estimates members have advised or directly assisted more than 250 people during the past three years.
In her case, like many others, a mental illness – it was added to the Diagnostic and Statistical Manual of Mental Disorders as a distinct disorder instead of being treated as an arm of obsessive compulsive disorder in 2013 – forces her to live under a veil of shame, in a world of loneliness.
In many others, the behavior becomes a matter of safety for hoarders, their neighbors and medics or firefighters called to homes that become difficult to navigate in times of emergencies. In fact, fire department statistics hold that one quarter of all civilian fire deaths can be attributed in some form of cluttered properties that prevent quick escape or rescue.
Hoarding behavior is far from the novelty act that has reached the public's consciousness through stories labeled “odd news” or cable-TV spectacles.
Sarah’s travails are amplified by a decades-long battle with depression which already cost her the ability to work. Anti-depressants didn’t do the trick. Neither did the therapist who declined to sign off on letting her take a break from her job at a school and hospital with the ability to return. The only way to avoid hiding out from co-workers so they wouldn’t see one of her crying spells that would start at 10 a.m. and end 16 hours later was to walk away toward the solace of home.
“My family was not getting what I was going through,” she explains. “You can’t let go of your kids. I’m religious, but you can’t let go of God. So, the job had to go.”
That was three years ago. Home has not proven to be a healing oasis.
Sarah collects assorted things she doesn’t need and protects property she needn’t hold onto. It’s driven a wedge between her and her family to the point that one child doesn’t feel safe letting Sarah’s grandchildren visit the house.
Her bedroom houses more clothes than she could wear if she lived another century. She knows she should get rid of much of it. She just can’t. When you have little money, you fear throwing away items you might later need. It’s a protective instinct, one of self-preservation. It weighs on her constantly.
The basement is where the issue becomes visibly evident.
There are boxes filled with papers dating back decades. She doesn’t even know what many of them are.
There's a box spring that doesn't even fit any bed in the house.
There’s an old water cooler and fax machine piled in a corner with 1980s-era electronics. She doesn’t know if any of it works, or whether she’d ever again need to use it.
There are also a few bikes (not all of them operable), a cage for a long-dead gerbil, a bunch of fabric that she may or may not ever need to make bedspreads and several bed frames of indeterminate sourcing. And that was just what was visible to the naked eye.
This scene represents her greatest fear of being ridiculed for not being able to self-correct the mental disorder that defines her life.
In talking about the importance of the Task Force – namely that people like her really had no place to go to learn about services and get legal help before – Sarah talks about the time her family had to call an exterminator. They bagged up everything in the house so it wouldn’t get sprayed by the exterminator. When that happened, her oldest daughter “had this wonderful idea” to throw non-essential items away.
Sarah saw the wisdom of that. It made sense. But then the part of her mind that relies on comfort hoarding kicked in.
“I said, ‘OK, but I have to go through it first,’” Sarah recalls. “When I came back home, all my stuff was outside in the trash. I started to go through the bags, but I had to stop myself because it’s like ‘What are people going to think if they see you going through the trash? You can’t go through the trash. You can’t go through the trash.’
“It was everything I could do, pretty much for 24 hours, even at 1, 2 o’clock in the morning, I had to fight the urge to go outside and go through it. I knew there was something out there that I would have taken out. My fear was how much I would’ve taken out. I knew we could let go of some of the stuff. I feel bad for (my daughter), so I just suck it up.”
In recent months, Sarah’s been able to part with some of that hoarded clothing. She chalks that progress up getting involved with the task force.
Chaired by Community Legal Service Inc. social worker David Wengert, it has brought together some 50 representatives of 25 agencies since its genesis in 2013, including the Philadelphia Department of Licenses and Inspections and the Philadelphia Fire Department.
“It’s hard to comprehend. I have to go through everything piecemeal, but then think I need to save everything. I may need it later. I go through a brooding period. Collecting things is just something I started doing. I don’t have many people in my life, so I collect things." – Elaine, Fishtown hoarder
The task force helps hoarders like Elaine, a 50-something woman who was gentrified out of a Center City apartment building and now lives in a cluttered Fishtown property.
Barely able to open the front door thanks to clutter, Elaine's living room features a nearly impassable path amid boxes piled to the ceiling and papers strewn across the ground. She hasn't seen what's inside those boxes near the back because she can't access them.
"Disorganized but organized," is how she describes a two-story home with "Think Positive Thoughts" signs taped to at least five walls or doors.
Unlike Sarah, it's easier for Elaine to part with stuff, but she just fills it back up anyway in "revolving door" fashion. She explained how it all started.
“There were four rooms just filled with stuff [in Center City],” she says. “I threw out all that I could, but I was all alone. That was a wake-up call and a nightmare. I didn’t know I was a hoarder at that point, so I just put everything into storage units that I’m still paying for.”
She was steered toward the task force and monthly Clutterers Anonymous meetings by a “woman at the Mental Health Association named Fran.” It’s forced her to stare down her illness head-on.
“It’s hard to comprehend. I have to go through everything piecemeal, but then think I need to save everything. I may need it later. I go through a brooding period,” she explained. “Collecting things is just something I started doing. I don’t have many people in my life, so I collect things.
“They take the place of people who aren’t in my life. In a way, realizing I have a problem is worse. Every day, I’m aware if it. Why do I have to live like this? It’s like there’s a neon sign on my forehead flashing, ‘Why me?’ I just wish someone would come over and not mind sitting here with me, coaching me on to get rid of stuff little by little.”
At this point, she says she's become numb to it most, but not all of the time.
"If I'm out and walking back to the house, going in that door, sometimes it makes me want to scream. Sometimes, I do," she says, realizing the dangers of her current living conditions thanks to weekly check-ins from case workers. "Only a handful of people have been in here in the past six years. The only reason my landlord hasn't made a big deal about it is I pay my rent on time every month and don't cause problems. He doesn't come in. I just hand him the check through the door.
"In the end, (the power to change) has to come from you."
Hoarding is a complicated issue with tentacles reaching into mental illnesses, public safety and personal sustainability that leads to legal complications, most notably with evictions.
Wengert traces the roots of this movement to Sheila Dodds, the pseudonym he gave a CLS client. Sheila came to his Center City office when she was threatened with eviction. Hoarding had led to infestation.
“As she sat in my office, I saw bugs crawling on her. One crawled across my desk. When I brought it to her attention, Ms. Dodds was clearly ashamed,” he told PhillyVoice. “My office was exterminated hours later.”
"Evicting people with hoarding behaviors is wrong, and I was determined not to let it happen again. I’ve accepted that it’s too late for Ms. Dodds, but when the next Ms. Dodds reaches out for help, I want to be ready." – David Wengert, housing-unit social worker, Community Legal Services Inc.
Looking back at the case, Wengert says Sheila had worked as a nurse at Jefferson Hospital, but physical ailments interfered.
“After having a brain aneurysm and three strokes, her hoarding behaviors worsened, and her pride prevented her from reaching out for help,” he recalled. “’It’s hard to accept that I cannot do things on my own like I used to,’ she told me.”
As her hoarding intensified, friends and family stopped visiting.
“She was alone and scared. The landlord of the multi-unit apartment building wanted her out, and to be honest, I understood why,” he says. “Without help, Ms. Dodds could not keep living like this.”
Securing home health-care and other services are particularly difficult for hoarders living on fixed incomes. Wengert still rues the fact that Sheila lost her municipal court case.
“She begged me to help her, but there was nothing we could do, and a couple months later, she was evicted from her home of 19 years,” he says. “Hearing her sadness and suffering made one thing very clear to me: Evicting people with hoarding behaviors is wrong, and I was determined not to let it happen again. … I’ve accepted that it’s too late for Ms. Dodds, but when the next Ms. Dodds reaches out for help, I want to be ready.
“With more resources (to help them get started) sorting and discarding and therapy, I know we could succeed in preventing eviction due to hoarding.”
The Philadelphia Hoarding Task Force has since held hundreds of meetings with the expressed intent of helping hoarders like Sara, Eliane and Sheila. Before Sheila, there was no playbook for this.
Today, they’re formulating best practices to help clients, which was at first difficult because nobody in the city had done it before. Luckily, some groundwork upon which they could piggyback was already underway through the Metro Boston Housing Partnership. That had already started compiling research.
Wengert says the behavior is sparked by a litany of causes. People can obsess over items they’re connected to as a coping mechanism. It can be brought on by the grief of losing a loved one, or the loss of a loved one who kept the living quarters orderly.
“They have difficulty parting with items, and then the items just keep building up. It’s a mental-health problem; they can’t figure out why they want to live like that and then shame sets in,” he says. “They find themselves wishing for social isolation. They’re not just eccentric. It’s a struggle.”
Not everybody wants help, though. After all, people are allowed to have as much stuff as they want. When it becomes a danger is where problems arise, which prompted the task force to start working to set standards of care and response when cases find their way into any number of agencies’ inboxes, mostly through landlord/tenant disputes.
“At first, we didn’t know what to do,” Wengert says, “but I’ve been blown away by the cooperation between the groups involved.”
Lt. Andrew Brown, executive assistant to the Deputy Commissioner of Technical Services, is the Philadelphia Fire Department’s task-force representative. His background gives him a keen insight into the hoarding issue. Diagnosed with OCD himself, he became interested in the disorder because his late mother-in-law was a hoarder.
“I could start to understand a little bit about what somebody’s going through with this kind of problem, how they actually are experiencing it,” he says of those two issues. “I had some insight both ways.
“One of the advantages I have when I go out and talk to people is that I can talk about my OCD, talk about something that happens with me, a real thing, a diagnosis and by sharing my diagnosis, I can reduce some of the stigma that people feel about the potential that they may have a diagnosis. We’re all people. We all have our own situations that we’re dealing with, and in the fire department, our whole goal is to help you to be safer.”
After researching the matter, he compiled a brief for department peers some five years ago. It wasn’t about addressing mental illness. Rather, it was a matter of life or death on fire and medical-emergency calls.
He cited a TEDx talk given by a woman who grew up in a hoarded home as eminently helpful.
“You have us responding for what is a relatively straightforward type of thing, even if it is something that’s severely emergent. We’re trained to deal with this,” Brown says. “But if we come in a find out that now, not only do we have somebody on the second floor who’s having trouble breathing, but we have to carry them down essentially a mountain of stuff. Or we have to carry them over a pile. We have to get somebody through something.
“Normally, the person would be able to walk out relatively safely, but now they can’t because of what they’re going through medically and what we have to do for them. So, really, they’re in increased danger and our responders are in increased danger.”
By Philadelphia Fire Department estimates, nearly 10 of the city’s 32 civilian fire deaths in 2014 could be attributed to cluttered homes.
In cases of fire, cluttered living spaces prevent clear entries and exits. It creates “a recipe for disaster.” By department estimates, eight of the city’s 32 civilian fire deaths in 2014 could be attributed to cluttered homes.
While there’s “not a checkbox on a form” that helps analyze the cause, “I was able to get clear indication from 2014, that 20 to 25 percent of our fire deaths were clutter related.
"We went into these homes and found there was a large volume of stuff that seems to have possibly contributed. Essentially, they couldn’t escape or the fire got too big too fast. Fire is often compared to an animal that eats and breathes. You need oxygen, fuel and heat. So, you have a situation where there’s a large fuel load, the fire has started somewhere in it and it takes a long time before anybody discovers it. You have deep-seated fire that’s waiting for us to come in and try to put it out, giving it a whole lot of oxygen in the process. This fire has been waiting and all of a sudden it takes off on us."
When trying to rescue someone in a hoarded home, firefighters find themselves crawling over things in an environment that doesn’t match normal rooms.
“The fire’s starting to grow. We realize we need to back out and have to turn around in a valley of stuff. We have no orientation. It can become very dangerous, very quickly,” he says.
Because of that danger, Brown has become an intermediary of sorts with a community risk-reduction mission of addressing issues before they become deadly.
If a call comes in to 311, 911 or one of the affiliated agencies, he can go out and meet with the hoarder, making a connection because of his struggles with OCD. His way in can be as simple as installing smoke detectors or suggesting home-escape plans and then noticing clutter and giving suggestions of how to remedy it. It’s an advantage of not being an L&I inspector or mental-health professional; he's more of a peer.
“What we’re finding in general – and this is true across emergency services everywhere – if we focus on community risk reduction, we can actually mitigate emergencies before they occur. We provide, essentially, a better return on investment for the people that pay us,” he explains. “If we can start to identify it earlier and start to help people find solutions so they can live safer without having to call us, then, we protect our members, we protect the public. It’s a better outcome for everybody for a smaller investment.
“What we have is a mental health issue that creates this cascade of problems. (When I talk to a hoarder), I might say, ‘You have a lot of stuff in your house, and those things are yours, that’s not my issue. I don’t want you to tell you to get rid of anything. What I want to remind you of is that you need to be able to get down your stairs at 3 in the morning. I talk to them about those very specific things that they need to change. … People have connections to their belongings. They have an emotional issue going on. We need to give them the tools and knowledge to help them address that.”
The task force is at the point of determining next steps, offering education programs and talking to various groups about the challenges hoarding creates.
“The challenge for the hoarding task force is that we can see a behavior, and we can address a behavior to some degree,” he says. “But we need to figure out how to support someone getting the mental-health support that they need.”
For Sarah, the North Philadelphia hoarder, it’s a double-edged sword to be so aware of her condition. She admits the living room is only clean because they just had a PHA inspection. Retaining the lease hinges on these physical check-ins.
Having been diagnosed with depression as a teenager, and seeing her mother hoard to the point of refilling a house that had been emptied within two days, she knows what it’s like to feel trapped, and how that leads to isolation, even if just in her head.
The hoarding “kinda snuck up on me,” she says of years of collecting items. She hates how she gets "aggressive" and "angry" when family tries to clean out stuff when she's not around.
“I look at it and ask why do I still have this. I do remember going through things and, at the time, seeing them and saying I have to have it even if I didn’t,” she says. “But, I still have this fear that I have to keep it all. I have an internal conversation where I remind myself that I haven’t used some of these things in years. Sometimes, emotion overrides the logic.”
"I'm just trusting God on this one. If I got a clear message from God that I have to get rid of things, I'd have to get rid of everything." – Sarah
Her caseworker has told her she’s been improving in the weeks since since finding the task force, but even though she’s recently discarded some of the clothing stock, she’s not so sure.
After all, some of her grandchildren haven't visited her in this house in more than a year. That's a motivator to continue with a plan to gradually throw things out that she doesn't need. She's done so, but at a mental cost.
“With my depression, I had to teach myself to hear a different voice than the depressed voice, countering whatever the negative thoughts are,” she shares. “That’s how I’m dealing with this: Talking myself into and out of it.
“This morning, I lost it. My family was like, ‘It’s old stuff, get rid of it.’ But some of it is my baby’s stuff. My dad had a TV tray when he was younger. They’re like it’s just a tray. I’ve never used it, but it was his. I’m afraid if I get rid of it, something bad is going to happen. I’m going to need it because of the financial situation. It’s real terror, a god-awful feeling that something really bad’s going to happen, something disastrous, and I’m not going to be able to do anything about it. Believe it or not, I hate clutter. I can’t function in it. But if I try to get rid of it, it somehow gets worse. I just can’t let go.”
She says she wants her home to look like one of those featured in magazines, but still makes excuses, or finds other chores to perform, rather than cleaning up. Sarah breaks down sobbing while trying to explain a mindset that makes her chest tighten and brings about difficulty breathing.
"I think about my babies, and I can't go back (in time) and this is all I have. It's just a piece of paper with horrible handwriting, but it's theirs, and that makes it mine," says Sarah, a single mother who raised three children.
Of the task force, she notes, "The bigger part for me is that (my case worker)keeps reminding me that I'm OK, that I'm not a horrible person. I don't want to be one of those people you see on the news, the kind of house where you can hear the mice running around. I don't want to be them. I don't want my kids to not be able to bring their friends to my house. People don't understand that you can't (clean up]\) even if you want to. I want to. But I can't. I keep trying, but it just doesn't work."
She says the case worker's weekly visits this spring have started to turn the tide, even if she doesn't believe when she notices progress from the point when she had to fend off eviction in court several months ago.
It could be that she just doesn't want to believe her. How can she be making progress if she knows that she still wants to keep the things she sheds? Sometimes, she's hopeful that she can emerge from a hoarding condition, but not always.
"When my kids leave, there's going to be nobody to stop me, and I'm going to look like those people on TV. I'm never going to leave my house," she says through tears. "Right now, I'm thinking that after you leave, I have to go down in the basement and think about what I have to get rid of. I try everyday to identify something I can live without.
"If I can't figure out why I do this, it's going to keep happening. I'm always worried about losing my home because of it, and I'm worried about losing my kids because of it. I'm just trusting God on this one. If I got a clear message from God that I have to get rid of things, I'd have to get rid of everything."