The Secret Lives of Hoarders: True Stories of Tackling Extreme Clutter

by Matt Paxton;Phaedra Hise

  In the kitchen, flies swarmed the windows and clung dying to a strip of flypaper hanging over the sink. None of the appliances worked except for one microwave that had been stacked on top of a broken one. All of the appliances and cabinets were smeared with unidentifiable black and orange gunk. Dust and cobwebs covered the walls and hung from the ceiling. The bathrooms were just as bad. A bucket of murky water sat next to the toilet, to pour into it for flushing.

  The dogs had clawed and chewed away the bottom half of each bedroom door, and they ran through the house and romped wildly on the beds, rubbing their dirty fur around on the bare mattresses. The few chairs were scratched and chewed.

  The smell was overwhelming—a mix of urine, rotting food, and dog feces. It was hard to have a conversation over the constant barking. Brown smears coated the walls and windows, and the sagging ceiling had completely fallen in places.

  Margaret was a large woman of an indeterminate age, with messy hair pulled back in a ponytail. Every day that we were with her, she wore the same permanently stained T-shirt and shorts, which didn’t cover the open sores on her arms and legs. She never smiled or even made eye contact with any of us. She didn’t seem to care that she lived in conditions worse than in many third-world countries. Margaret is what most people think of when they think “hoarder.”

  But there was a time when Margaret wasn’t much different from two of my other clients, Brad and Ellen, a middleclass couple raising three small boys in a pretty suburban neighborhood. Ellen was a typical frazzled mom, who got her daily exercise chasing after the kids. Brad was a mellow guy, with dark hair and a little bit of a paunch under his button-down and khakis. The whole family was clean, well dressed, and friendly.

  Their house was cluttered—but not the stereotypical place that one associates with classic hoarders like Margaret. There were piles of clothes, toys, papers, and mail that looked like someone meant to get to them a few weeks ago but had gotten distracted.

  The telltale sign of hoarders-in-training: The piles were in every room.

  Brad worked with computers, and he had saved a lot of his cast-off electronic equipment in the basement, thinking someone might use it one day. Ellen had been a teacher and had kept many of her old supplies and now-outdated workbooks.

  Ellen was having trouble keeping up with laundry, with stacks of dirty and clean clothes on the chairs and in front of the washer. The kitchen cabinets were bulging with boxes and cans of food that the two of them liked to stock up on when they were on sale.

  Brad and Ellen just couldn’t let things go, and weren’t processing the avalanche of stuff that comes with raising three active boys. Left unattended for much longer, the clutter would become full-blown hoarding and overwhelm them and their small house.

  According to a study by Johns Hopkins University, there are an estimated 12 million hoarders in the United States. Four percent of the population is somewhere in the range of Brad and Ellen to Margaret.

  Hoarding isn’t about how much stuff a person has. It’s about how we process things. Most people can easily make decisions about what to keep and what to toss or donate, and then they follow through. A hoarder can’t. There’s something off-kilter in the hoarder’s brain that we don’t fully understand yet. It starts small, and then it gets out of hand.

  Hoarding begins like this: Most people who go to a fast-food restaurant and get a cold soda then throw away that big plastic cup when they’re done drinking. Maybe they even recycle it. But a hoarder has issues with that cup. The cup is useful. It’s a pretty sturdy cup, not a flimsy little paper thing. Maybe a church feeding program or a homeless shelter could use it. Carelessly tossing that cup in the trash would be a waste when there are so many people in this world who can use a good cup. So the hoarder keeps it, intending to get it to the church or shelter. It just never gets there.

  Or that cup—decorated with colorful cartoon characters—is meaningful because the hoarder went to the fast-food place with her toddler daughter as a special treat. The moment was an important emotional memory for the mother, and looking at the cup brings back that joyful experience. Throwing away the critical link to such an important occasion is unthinkable.

  Hard-core hoarders go through this internal debate with every single item that crosses their path: plastic bags, junk mail, wine corks, fast-food chopsticks, and soy sauce packets. They are the ultimate recyclers, but for some reason that cycle never gets completed. At some point hoarders lose the stuff-management battle and get overwhelmed. The piles grow, the trash overflows, embarrassment builds, and they stop letting people into their homes. Without help, they have no idea where to even begin to clean up.

  Once the possessions start to take over, hoarders tend to get attached to the items no matter what they are. Being surrounded by piles of stuff can be strangely comforting. The stuff is there, day in and day out. It doesn’t change, it doesn’t leave, it doesn’t even move unless the hoarder wants it to. Hoarders feel like they have everything they need—lots of clothing, spare toothbrushes, extra food. They’re in the land of plenty where they are in charge and control everything.

  SEPARATING HOARDING FROM MESSINESS

  Hoarding isn’t a character flaw. It’s not laziness or forgetfulness. It’s a mental disorder. While scientists and medical professionals are still figuring out exactly what hoarding is and what causes it, most agree that it is a glitch in the brain that manifests itself by making a person want to hang on to things, whatever those particular things may be.

  The critical thing is how to determine if someone is just messy or a bona fide hoarder. Everyone builds up a few piles now and again, and many of us have a growing “collection” of something like porcelain Christmas houses or old Sports Illustrated magazines. When is that a problem?

  Hoarding is an issue when the clutter begins to affect the activities of everyday life: cooking, cleaning, entertaining, and moving freely about the house. In the early stages it can be difficult to tell hoarding from messiness. Someone who shuffles piles of junk mail around the kitchen counters or who is too embarrassed by a messy house to invite people over might just be on the slippery slope to hoarding—or not. If the clutter gets progressively worse instead of better, it’s probably hoarding.

  THE HOARDING SCALE

  Appreciating how serious the issue is—or could be—means understanding where the hoarder fits on a scale from mild to totally dysfunctional. Quantifying and qualifying the problem will then help guide what actions need to be taken to aid the hoarder.

  Created by the Institute for Challenging Disorganization, which is dedicated to the benefit of people affected by chronic disorganization, the Clutter Hoarding Scale is an organizational assessment tool for use by organizational professionals. It ranks hoarders from Level 1 (Brad and Ellen are the closest example discussed in this book) to Level 5 (like Margaret), depending on what’s in the house and how it’s being maintained.

  To me, hoarding is as much about the individual as it is about the stuff. This scale does not take into the account the physical health of the individual or the person’s mental state. So, as shorthand for working with hoarders, I developed my own version of this scale.

  The original scale that my company, Clutter Cleaner, used was a pretty subjective one and based roughly on the number of dead cats we found in a house. But after years of working with hoarders we’ve refined our own language and now incorporate not only what we discover by way of stuff but also the physical and mental status of the client. As well, the Clutter Cleaner scale takes into account the social factors of American society, in which we have a lot more leisure time, and the pressure that everyone—not just hoarders—is under to consume.

  The Clutter Cleaner scale is not used by psychiatric professionals or therapists. We use it as a guideline to help understand the hoarders with whom we work and to determine how much we can realistically expect them to change.

  ▶ Stage 1

  Brad and Ellen represent fairly typical Stage 1 hoarder
s. Their clutter wasn’t excessive. Their house had all doors and stairways accessible. All the members of the family were healthy, clean, and well nourished, including the dog. Brad and Ellen both participated in a few hobbies, maintained their finances, and regularly invited friends and family over. Ellen felt a little anxious about the clutter, but it didn’t affect their lives in a major way except for having to move piles around the house.

  Brad and Ellen’s garage before the cleanup. Simple Stage 1 hoarding that just needed some rules for organization.

  A Stage 1 hoarder usually isn’t recognizable as a hoarder. At this stage, the problem isn’t about volume; it’s more about the habits that the hoarder is developing as he or she tries to handle clutter. Early-stage hoarders have trouble parting with items and are beginning to build collections. They may be starting a shopping habit or a hobby that lends itself to acquiring things. The clutter will grow and hoarding will develop if these behaviors aren’t curbed.

  For example, Brad’s computer parts could easily accumulate to the point at which they become too much to deal with. Or they could take on more emotional value than physical value, so he’d be reluctant to just toss or recycle them. Ellen risks getting behind in her general cleanup—especially things like laundry. Clothes might become unusable and she’d have to buy more—often of the same things—just to make do. And the more stuff one has to cope with the harder it is to keep the dust, dirt, cobwebs, and whatnot at bay.

  Although messy, Brad and Ellen’s house had a clean kitchen and bathrooms, and everyone in the family was still able to wash and get clean clothes daily. Brad and Ellen were apologetic about the growing mess, but they were relatively happy, without a lot of anxiety about the situation. More important, they were self-aware enough to get help at an early stage.

  ▶ Stage 2

  Coping with stuff is like filing, before the days of the “paperless office.” You leave it for a day or two, you can cope. After a week it becomes a pain but manageable. In a month or two, you are ready to give up and stuff the whole lot under your desk. After all, if you didn’t need the papers for a month or however long they sat in a pile, how important could they be anyway? And this thinking—or inaction—is exactly what leads to Stage 2.

  Typical Stage 2 family room. The furniture is starting to disappear under the stuff, but the room is still functional and pathways exist.

  If Brad and Ellen hadn’t sought some help early on, their house could soon have faced some safety issues, where an exit from the house is blocked, or there’s one room that’s basically an uninhabitable dumping ground. Everyone has a junk drawer that holds odds and ends of stuff. When that junk drawer becomes a junk room, it’s a signal that you are moving up to another stage. Or if a major appliance like a dishwasher or air conditioner hasn’t been working for several months because it’s difficult to get to it for repair, it is most definitely a sign of a Stage 2 hoarder. And along with this, there is less attention to housekeeping: Dishes pile up in the sink and shelves remain dusty. If there are pets, there may be some odor from a dirty litter box or one too many accidents.

  Hoarders at this stage are starting to focus more on clutter than on life. They tend to invite fewer people to their homes from a sense of embarrassment, which is exactly what happened to Jackson.

  Jackson hoarded items having to do with the rock group Blondie. He collected every bit of memorabilia he could find with Blondie’s name on it, from music to souvenirs. His house was very clean; he had his collection carefully cataloged and arranged. But it was overflowing out of the two rooms he had dedicated to be more or less the “museum.” At some point, Jackson had stopped being discriminating in his collecting and it practically drove him out of his house.

  Emotionally, there is some anxiety and mild depression at this stage. A Stage 2 hoarder begins to withdraw from friends and family. As a substitute, he or she begins to acquire more things to fill that void, and the cycle continues in earnest. As the hoarder brings home more items, managing those takes priority over personal relationships. At this point, the hoarder begins to shift from embarrassment to justification, explaining why he or she “needs” the possessions.

  ▶ Stage 3

  It is at this stage that the signs of hoarding become evident to the outside world. There may be a little structural damage to the house—for example, a sagging porch. Some indoor items are stored or tossed outside. There’s some evidence of what I call “spaghetti” extending all around the house—tangles of power cords and phone lines jury-rigged to keep things operating when electrical outlets are blocked off. If there are pets, there are also some carpet stains and fleas. The sink is usually filled with dishes and standing water. Walkways and stairs are overtaken with clutter and difficult to navigate. Outside storage—a garage or shed—overflows.

  Stage 3 hoarders are losing track of their personal care—bathing and haircutting aren’t a priority. Because kitchens at this stage are often borderline functional, Stage 3 hoarders tend to eat food that’s been cooked/reheated in the microwave oven or fast-food takeout. This almost always causes weight gain. For Stage 3 hoarders, physical activities are often limited. They’ll sit for hours in front of a TV or computer screen. The bad food and lack of exercise contribute to the weight gain, and the classic stereotypical picture of the hoarder emerges. The Stage 3 hoarder’s pathology is slipping into the workplace, and job performance suffers. Plus finances are probably becoming an issue.

  Matt sorting through a Stage 3 animal hoarder’s living room, trying to find family jewelry among the dog feces.

  At this stage the hoarder is often depressed and claims to want to be left alone. Many hoarders find their best companions in their pets—and often enter into another type of hoarding. (More on animal hoarding follows.) It’s likely that family members have tried to clean the house and were either rejected or withdrew, their attempts in vain.

  ▶ Stage 4

  At Stage 4, there’s structural damage to the house in several areas—floors and ceilings may be sagging, or there is unrepaired water damage. There may also be mold, spiderwebs, and bugs. There’s rotten food in the kitchen. Major appliances don’t work and can’t be accessed for repair. Things are stored in odd places: clothes hang from the bathtub curtain rod; important documents are in the oven. This house is truly dangerous, with blocked exits, poorly stored chemicals, and papers creating a real fire hazard.

  Cracking open a refrigerator like this one, which hasn’t been open in more than fifteen years, is one of Matt’s and his crew’s least favorite jobs.

  The Stage 4 hoarder begins to retreat to a small area of livable space in the house—a “cockpit” where the hoarder spends most of his or her time. The hoarder probably doesn’t do laundry, and just buys clothes at the thrift shop to replace soiled shirts and pants. A hoarder at this stage may bathe at the sink or not at all.

  Hoarders have pretty much stopped following societal rules at this stage. They struggle to get to work on time, or they may quit working and be unable to pay the bills. The phone may be ringing frequently from bill collectors—until it too is shut off, along with the electricity and water. Pets are beginning to be on “vacation,” which means either dying or running away. Because their lives look so bleak, Stage 4 hoarders talk mostly about past memories or unrealistic plans for the future.

  ▶ Stage 5

  Margaret is a Stage 5 hoarder, which is as bad as it gets. There is major structural damage to the house, with severe mold, strong odors, bugs, rodents, and cobwebs taking over. Entire floors of the house might be completely blocked off. There are walls of clothes or other items in every room. The hoarder spends the entire day struggling to complete simple tasks like eating, sleeping, and going to the bathroom. Diet is generally limited to soft drinks and either fast food or now-expired generic brand food that was bought on sale.

  Typical of the “great walls” of clutter that Matt and his crew encounter in the most dangerous Stage 5 hoarding cases.

  If frie
nds and family are still in contact with the hoarder, they are deeply concerned and have probably tried interventions. A hoarder at this stage is usually in serious financial trouble, and it’s likely that someone has contacted city or county authorities.

  Depression is often so severe for a Stage 5 hoarder that he or she struggles to get up each day. A hoarder at this stage is often confused, perhaps saving items for people who are no longer living. Hoarders at this stage don’t leave the house, with the exception that some may move to their cars or a homeless shelter to sleep.

  None of these stages is clear-cut. The scale shows a continuum in which a Stage 4 hoarder could have a clean house with no bugs or cobwebs, but it is so packed with stuff that nothing is accessible. Or a Stage 2 hoarder might have a fairly accessible house but a completely filled basement and attic.

  The initial assessment of what is being hoarded and where the hoarder is on this scale gives us a sense of the severity of the problem. And while it seems, on the surface, a simple matter to call in a cleaning and repair crew, dealing with hoarders is far from simple. The key to a successful cleanup is to understand what makes hoarders do what they do.

  WHO ARE THE HOARDERS?

  When I first started my business and was searching for jobs, I would drive around and hunt for hoarders. I looked for a house where the blinds were closed and pressed against the windows. Or the yard was overgrown and animals were roaming around. I knew that I’d find a likely client if stuff was piled on the porch or in the yard or in an outbuilding on the property. The stereotypical hoarder—the overweight, elderly woman, unkempt, dressed in layers of clothes, sitting in front of the TV all day long—lives in that house.