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Consumed By Clutter

View of my mom’s living room.

My mom has a hard time throwing things away.

Trash and old clothes litter the house I grew up in. Boxes teeter precariously on top of each other. Old computer equipment and cereal containers blanket the dining room table. Swollen cans of food line the pantry walls and a blackening bunch of bananas attracts flies on the kitchen counter.

My mom, Nancy, gets around most of the house through small pathways she has cleared from the clutter. Large portions of some rooms, though, remain inaccessible. It’s impossible, for example, to open the door to my brother’s old room, because of all the boxes and clothes stuffed inside.

On the surface, it looks as if she is just a poor housekeeper. But there’s a much more serious problem lurking underneath: she is one of the more than three million Americans suffering from compulsive hoarding, a complicated disorder characterized by the psychological need to acquire objects that have little value to others and an inability to throw those objects away. The disorder leads to extreme clutter and even hazardous living conditions, such as bad air quality, mold and in some cases mice and rats.

Until several years ago, psychologists categorized hoarding as part of the spectrum of obsessive-compulsive disorders (OCD), such as hypochondria and compulsive skin picking. But in the next revision of the Diagnostic and Statistical Manual for mental disorders, the go-to book for mental health professionals, compulsive hoarding will appear as a condition separate from OCD, opening up the door for more funding and research.

Though some people with OCD do hoard, OCD hoarders collect things because they fear some sort of unlikely event. For example, a person might have a room full of unopened mail because he fears if he opens it he might find anthrax. Compulsive hoarders, in contrast, keep things because of heightened emotional attachments to objects, failure to follow through on tasks, and inability to separate items they need from items they don’t.

Compulsive hoarders often feel isolated because they don’t want to bring people into their homes.

“You end up apologizing for your mess,” my mom tells me. “But you don’t seem embarrassed enough to do much about it; you’re not motivated enough.”

Reality shows like A & E’s “Hoarders” have taken the public into the homes of hoarders for the first time, showing just how devastating the disorder can be. Show participants apply for a spot through A & E’s website. The show’s producers then choose the hoarders who are in the most need of help.

One woman, who appeared on the first season of “Hoarders” in 2009, faced the demolition of her home because it was a health hazard. The inside was unlivable crammed with boxes up to the ceiling that had been chewed on by rats. A thick layer of cat feces covered the floor and bags of human waste filled the stairwell. The A & E show sent a therapist, professional organizer, and cleaning crew into her home to attempt to clean out the mess in two days. The woman was visibly distressed and embarrassed by what the cleaning crews found, making little eye contact with the people helping her and storming off when things didn’t go her way.

While my mom’s hoarding has not quite gotten to the point of the woman on “Hoarders,” the extreme clutter is a huge source of anxiety and embarrassment for her.

And she wasn’t the only person embarrassed. I rarely invited friends over. I didn’t want them to see the boxes of old newspapers and coupons. I didn’t want them to smell the must from dust and the 10 or so dogs pent-up in the utility room. I didn’t want them to walk on the carpet that sometimes crackled underneath my feet from who knows what.

I stayed away from home as much as possible, immersing myself in after school activities. When I was there, I retreated mostly to my room. It was one of the few places in the house that got regular cleaning. (I made sure of that.) But that didn’t keep some of the consequences of the clutter from making their way in: In high school, I remember being woken up at night by the mice rustling under my bed. I didn’t sleep very well. My brother and I occasionally would see a long, black rat scurrying behind the living room television or couch.

The clutter gives the critters the perfect nesting place, attracting other vermin, too, such as bed bugs and roaches.

My parents’ house wasn’t always messy. In fact, the kitchen looked pristine up until I was 9 when my mother became sick.

“Most of them [hoarders] talk about a traumatic experience or a period in their life in which they really couldn’t take care of their home,” says Suzanne Chabaud, a clinical psychologist who specializes in obsessive compulsive and related disorders. “Or they used acquiring to give them a sense of satisfaction when there was so much other distressful things going on in their life.”

Me (left), my brother Jeff and my mom Nancy in 2010.

My mom, one of seven children, grew up in a small town in Wisconsin. Her father spent most of his time drinking at bars, and her mother worked multiple jobs just to make ends meet. Money was tight and it was often a challenge just to get enough food on the table.

“You kind of have a tendency to keep things because of the poor background and not having things until you could earn your own money to get them,” my mom says.

At the age of 18, she left the Midwest, traveling to the sunny state of California. She met my father in her 30s when she began working as a clerk at the electronics company he worked at and they married soon after.

By 40, she had a husband, a house, a job, and two kids. Aside from the typical marital squabbles, life was great.

Then mom became pregnant with a third child. Dad didn’t want to keep it, but mom refused to give the baby up. Nine months later she gave birth to Sabrina. Sabrina was sick. The valves and passageways in her heart did not function properly. She had brain damage, and was taken off life support when she was three days old. My mom was never the same after that.

The clutter was her coping mechanism. Something in her brain made her think that acquiring all the stuff would replace the child she lost and give her the love she no longer received from my dad.

I first remember the house getting messier after Sabrina died when I was 5. By the time I was 9, though, it had spiraled out of control. At the drop of a hat, my mom would start to cry. These intense mood swings would go on for days. She began having stomach problems and was diagnosed with Irritable Bowel Syndrome, a disorder affecting the large intestine, leading to abdominal cramps, bloating, diarrhea and constipation. My mom did not have the energy or the ability to concentrate long enough to keep the house in order.

Her behavior was typical of hoarders.

An Australian study done in 2006 found that hoarders demonstrated slower reaction time when trying to make decisions compared with non-hoarders, higher difficulty distinguishing functional items, like a plastic Ziploc bag, from non-functional items, like a Ziploc bag with tiny holes in it, and less ability to pay attention to the task at hand.

In addition to skills deficits, hoarders are often perfectionists, needing to have the exact tool, piece of clothing, or yarn for every occasion. For example, a hoarder might have 30 different black purses. This perfectionism gives the person power over her life, because she feels prepared.

“It’s a control factor and it’s the only thing you can control sometimes,” my mom says. “You can’t control life, you can’t control your kids 100 percent, and you can’t control other things that are happening around you.”

But my mom could control the amount of clothes and food that came in our house.

“Most people who hoard get a sense of pleasure when they acquire objects,” says Chabaud. “Then they feel distressed when they need to let go of the objects.”

In 2004, a comparison of brain scans of OCD hoarders and non-hoarders with OCD showed that OCD hoarders metabolize glucose differently. Parts of the hoarders’ brains had much lower glucose metabolism than non-hoarding OCD patients. The findings helped change the way researchers thought about hoarding. However, the study had many limitations, such as a small sample size and comparison only in the context of OCD. Psychologists have had a hard time securing funding for further studies because compulsive hoarding hasn’t (until recently) been considered a separate disorder.

The breakfast counter looking into the dining room.

Trying to help my mom clean the house was a disaster. My brother, dad and I would sit with her in the driveway going through boxes; we would ask her if she wanted to keep an old plastic toy or a broken patio chair. Her answer would always be yes, because she saw the toy and chair as things she could still use.

Once, my dad thought it would be a good idea to rent a dumpster while she was gone and throw everything that looked like junk out. Big mistake.

As soon as she noticed things missing, she went ballistic, screaming at my dad and crying. She scoured the dumpster, which hadn’t been picked up yet, pulling out nearly everything from an old Haunted Mansion board game to tattered and yellowed newspapers. For days afterward, she was anxious and irritable.

“Most family members make it [the clean up] worse,” says Dorothy Breininger, president and founder of the Delphi Center for Organization. “Professionals tend to work on a factual basis and family members work on an emotional basis.”

For example, a professional organizer such as Breininger will go into a hoarder’s home and ask the hoarder what is most important, making a list of items that have the most value to the person. When it comes time to clean, the organizer will set those items aside. Family members, who are often frustrated and angered by years of dealing with the mess, wouldn’t take the time to ask what is important to the hoarder. Instead, they would throw everything out that appears useless to them. This doesn’t do anything to help the hoarder, and makes an already tense situation even more volatile, says Breininger.

“You go into a state of mourning if something is stolen or something,” my mom says. “[You feel] violated because you didn’t have the chance to go through it and sort things.”

My mom’s thought process is clearly different than ours. She doesn’t see a puzzle with missing pieces as useless, she sees it as something she could use in the future or give away to someone else. Since she didn’t have a whole lot of things growing up, she now cherishes everything.

The objects that hoarders overvalue generally fall into several different categories: instrumental, sentimental, and intrinsic, says clinical psychologist Renae Reinardy, who has worked with hoarders for 11 years

A backpack or a blanket falls into the instrumental category. When there is a large rip in the blanket or the backpack’s zipper is broken, non-hoarders would just throw them away. Hoarders keep them, because their decision-making processes have gone awry, making them mentally unable to discard them.

Sentimental items are associated with a lost loved one or an event. A hoarder, for example, might keep the containers for her dead mother’s favorite cookies, having tens if not hundreds of them scattered around her house.

Intrinsic value deals with cosmetic appeal or how much an object is worth. Since I can remember, my mom has collected porcelain dolls. The dolls are not only beautifully crafted but also worth a decent amount of money. Buying one or even 10 dolls may not be a problem. But when 10 dolls turns into 100 or even 1,000 and the person can’t get rid of any of them, it becomes a problem.

Not all hoarders overvalue the same types of objects or keep those objects for the same reasons, though.

“It’s not a one size fits all conceptualization,” says Reinardy. “But there do tend to be similarities.”

What’s different is the reasons they keep items.

One person might buy clothes or vases because they are on sale. Someone else might collect The New York Times because his dead father loved The New York Times. An elderly lady might have 50 cats to replace the children who left home and the husband who ran out on her.

“That’s what all that stuff is,” says Breininger. “I call it a great big hug.”

Many hoarders have problems with emotional attachments. They might have interpersonal issues, an inability to communicate with other people, or they might feel a belonging is a part of them, and getting rid of that item would be like breaking their arm.

Interpersonal and emotional issues are not the only reasons people accumulate extreme clutter. There is a genetic component as well.

Compulsive hoarding runs in families. (Fortunately, neither my brother nor I seem to hoard. But I do have an aunt and two great aunts who do.)  The OCD Collaborative Genetics Study looked at OCD patients and their families and found that those with hoarding tendencies may have an abnormality at chromosome 14. But, like many other studies on hoarding, research was done using a small, OCD-specific sample. In addition, it is not known what specific hoarding traits are genetic, explained clinical psychologist Randy Frost in the Spring 2007 New England Hoarding Consortium Newsletter. Hoarding itself may not be heritable, but damaged decision-making processes or organizational abilities could be, he added.

My brother used to sleep in this room.

Traditional OCD treatments did not work on hoarders, and clinicians shied away from working with them because they were notoriously difficult to help. Typical OCD treatment involved exposure therapy where the doctor exposed the hoarder to her fear by throwing out roomfuls of belongings to see how she acts.

“What people didn’t understand is that it [exposure therapy] was giving the wrong treatment,” says Reinardy. “There’s nothing wrong with the client. There was something wrong with the treatment and the therapist.”

By throwing all of a hoarder’s belongings out at once, the person would not learn how to change her thinking patterns. Instead, she would just get angry with the therapist and refuse treatment.

As recently as three years ago, clinical psychologists still treated hoarders based on exposure therapy. Clinical psychologists are now beginning to treat patients who compulsively hoard differently, taking the time to break down a clients actual thought-processes and working to change them.

Many times those thought-processes are complicated by coexisting conditions like depression or anxiety, which also need to be treated.

For some compulsive hoarders, like my mom, their depression makes them apathetic toward the condition of their home, prone to staying in bed for days. Hoarders also may get so anxious at the thought of throwing something away that they pace back and forth in a room or become visibly tense.

“The vast majority of times there are co-occurring mental health issues,” says Mark Odom, a hoarding specialist and consultant to the Orange County Task Force on Hoarding.

Odom estimates that as many as 60 percent of hoarders are depressed and 20 to 25 percent have generalized anxiety disorder (GAD) and social anxiety disorder. Hoarders with depression or GAD need antidepressants to correct the chemical imbalance in their brain.

The combination of anti-anxiety or anti-depressant medications and behavioral reconditioning can help a sufferer overcome her condition. Psychologists work with hoarders to show them how their thought processes are flawed and how they can fix them. This process takes a lot more time than exposure therapy. Instead of throwing everything out at once, therapists have to chip away at the disorder until the person is finally free from the mess.

A hoarder may be in treatment anywhere from eight weeks to three or four years, depending on the severity of the disorder, co-occurring conditions and the state of their home. For some, eight weeks is all that is needed to change a patient’s thinking patterns. For others, who may have other compounding issues like depression or GAD, it can take a lot longer.

During therapy, a hoarder may also work with a professional organizer, who teaches the hoarder sorting skills and how to categorize things. These specialists take classes in classification techniques and take a test for certification. Strict guidelines ensure the hoarders will follow the rules and not keep anything they don’t identify as important. Organizers also know how to utilize space efficiently, says Chabaud. But it’s not always easy for them when they get to the house. Hoarders are often apprehensive to work with an organizer because they are afraid the person will toss everything into the trash.

“The only way to earn trust is to show it,” says Breininger, who always asks a hoarder about an item before she throws it out.

This can be difficult, especially when a person is unwilling to get rid of anything. In cases where “no” is the only answer, organizers (and therapists) have to carefully work with the hoarder to find out why she really doesn’t want to throw anything away. Professionals also need explain to the person why keeping an item doesn’t make sense. After perseverance, the hoarder usually begins to understand.

Some hoarders reach a point where they need immediate intervention, such as a man who may have his kids taken away by Child Protective Services for the condition of his home or a woman who faces heavy fines and possible jail time for code enforcement violations. In these emergency situations, the city or county may refer the person to a therapist or organizer. The television show “Hoarders” also helps sufferers in dire need of help.

“It’s like ER,” says Breininger, who began appearing on the show in 2009. “We go in with a full team. We save them and rescue them from having their kids taken away or being evicted. It’s an emergency clean up.”

Reinardy and Chabaud, both clinical psychologists, have appeared on episodes of the show. But they, along with Breininger, say that the emergency clean up is not the best way to help these people in the long run.

On the show, the therapists don’t have the time to really assess the hoarders for compounding conditions or work with them to change their behavior. Many of the hoarders end up filling their house back up within months of appearing on the show. Despite this, the show has done a lot of good mainly through bringing public awareness to the condition, says Breininger.

“People [who saw compulsive hoarders] were saying ‘oh these are slobs,’” says Breininger. “Now people say ‘I know someone and it’s a family member.’ It was a huge judgment before. Now people are recognizing that it is some sort of mental disorder.”

My mom has never received treatment for her hoarding because she never brought it up during her doctor’s appointments. For a while, she did take medication for depression and IBS. But when she lost her health insurance in 2003, she could not longer afford the medication.

Perhaps with continued research, a greater understanding of the condition’s biological mechanisms and shows like “Hoarders,” more and more people will have compassion for people suffering from the condition and the hoarders themselves will realize they can get help.

“There can be 20 people walking down the street and all of them dressed impeccably with a job and there’s no way to tell which one of them is a hoarder,” says Breininger. “Hoarders are not street people with a shopping cart. They are our next door neighbors.”

Or they could be your mother.

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