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April 10, 2007

Through the mess, darkly: Or, how living with a compulsive hoarder destroyed my family

by jane doe
 

By Gina Moeller

This is the story of my life with a compulsive hoarder. I know what you’re thinking. My crazy uncle is a packrat, too. Lots of us save string and ribbons and gift bags and stuff we don’t need, for longer than we need it. True. We are packrats, of the relatively harmless variety. We derive pleasure from re-use, from thrifty consumption. We are not compulsive hoarders.

Dear Visitor,
Welcome to the Obsessive Compulsive Foundation’s Hoarding Web site. Before the early 1990s, there was virtually no research on compulsive hoarding. Since then, interest in this topic has increased dramatically among research scientists and clinicians. As a result of recent media coverage of hoarding, interest among sufferers and family members has increased as well. In the last few years, we have received far more e-mails and letters from people seeking help and information than we could possibly respond to. This Web site is designed to provide information and assistance in a more comprehensive and efficient way. It is divided into several sections that cover … useful information about this medical disorder. We will update this site regularly to reflect the rapidly expanding knowledge about this problem.
We hope you find it useful.
—Sincerely, Randy Frost, professor, Smith College, and Gail Steketee, associate dean/professor, Boston University School of Social Work

Oh, we found it useful. It saved my life. And, I believe, my children’s lives, too.
According to the site, “hoarding” is defined as the acquisition of and inability to discard worthless items even though they appear (to others) to have no value. Hoarding behaviors can occur in a variety of psychiatric disorders and in the normal population, but are most commonly found in people with obsessive-compulsive disorder. Those who report compulsive hoarding as their primary type of OCD, who experience significant distress or functional impairment from their hoarding, and who also have symptoms of indecisiveness, procrastination and avoidance, are classified as having compulsive hoarding syndrome. In the United States, an estimated 700,000 to 1.4 million people have compulsive hoarding syndrome.

 


Studies carried out by the National Institute of Mental Health estimate that 2 percent to 3 percent of the population suffers from OCD — creating around $8 billion annually in social and economic losses, with about 15 percent to 30 percent of those OCD sufferers experiencing hoarding as their primary symptom.

 

By Gina Moeller

No statistics are kept on victims, but make no mistake, for every hoarder there is often a family destroyed.
“Compulsive hoarding,” the site says, “is not just an enthusiast’s passion for collecting stamps, dolls or baseball cards. Neither is it someone who likes to ‘tinker’ and fix up old cars or broken furniture.” People who have this syndrome have an “insurmountable difficulty throwing anything away, from the oldest paper clip, to a used fast-food Styrofoam clamshell, to old newspapers, for fear that they might need those items in the future.” The most commonly saved items include newspapers, magazines, old clothing, bags, books, mail, notes and lists.

 


This isn’t the kind of hoarder we normally hear about. We all know about “cat ladies” who “collect” stray cats and/or dogs by the dozens and end up on the six o’clock news after they’re discovered living in a crap-filled house.


Compulsive hoarders tend toward perfectionism and task-avoidance. They can’t stand to make mistakes, so they avoid or postpone decisions. Even the smallest task may take forever because it must be done “right.” Everything becomes tedious and overwhelming.

 

By Gina Moeller

Their families love them, just as our family loved our husband and father. We wonder, compensate, enable and try to throw things away when they aren’t looking. We take our trash elsewhere so it can’t be “edited.” We withdraw, quit inviting, quit visiting. But he can’t stop and won’t stop and that’s what a compulsion is. If you stop, you’ll die.

 


So we keep trying to love them whole.

Dr. Frost and his colleagues define compulsive hoarding syndrome according to three criteria:
1) The acquisition of, and failure to discard, possessions that appear to be useless or of limited value.
Compulsive hoarders have an obsessive need to acquire and save objects, and tremendous anxiety about discarding them because of a perceived need for the objects or excessive emotional attachment.
2) Living spaces sufficiently cluttered so as to preclude activities for which those spaces were originally designed.
With so many items coming into the home and very few going out, clutter accumulates and spreads to floors, counter tops, hallways, stairwells, garages and automobiles. There may be only a narrow pathway between rooms.
3) Significant distress or impairment in functioning is caused by the hoarding.
Because of perfectionism, compulsive hoarders frequently take a long time to do even small chores — or they just don’t do them. Many have limited social interactions. A survey of elderly hoarders found that hoarding constituted a physical health hazard in 81 percent of identified cases, including fire, falling, unsanitary conditions and inability to prepare food.

 

By Gina Moeller

The most commonly hoarded items are papers — important things such as tax records, and unimportant things like brochures, junk mail, newspapers, magazines, paper scraps with notes or shopping lists. Some keep food products, broken items to be fixed, clothes, books, craft materials and leaves. In extreme cases, hoarders save feces or urine.

I was married to a metal hoarder. He is a machinist, so it makes some sense. But it wasn’t just metal. His hoarding started in childhood. When we started dating in our early 20s, he was still living at home, upstairs, but his old bedroom in the basement was also “his” room. This one was filled floor to ceiling, wall to wall. Every toy he ever owned, magazines, maps — I never got a good grasp of what all was in that room, but it was called his room and pretty much everyone left it alone. He spent hours down there, “organizing” and “sorting” and just being with his stuff.

 


I think it was a sort of mental pacifier. Distract yourself with enough chaos and bad thoughts won’t get in. He had severe emotional problems as a child that were never dealt with, unless you count spanking. I do not.
Another part of the basement held his father’s hoarded things. His father saved machine and car parts; he was handy and could often use them. It was a family joke that if Dad kept something long enough he would eventually use it. Everyone in the huge extended family called him for the old spark plug, the out-of-manufacture carburetor part. I believe Dad had the same problem but kept it in check better. He always seemed to have his own anxiety and depression. I only knew him as an adult, and he was judgmental and perfectionist.


Hoarding is thought to be so intense because it is termed a “successful” compulsion — that is, it satisfies the compulsive hoarder. Because families compensate and accept for so long and to such a degree, when they do finally reach a breaking point, there is extreme resistance to treatment:

 

By Gina Moeller

“Why do I have to get rid of it now when it’s been around here for years?”
This reluctance to seek treatment and the difficulty in treating hoarding as a behavior leads to widespread speculation about what is different in this population. In my case, my ex-husband gave up his family and home in a divorce rather than deal with his problems.

 


In the beginning it was just a nuisance. But over the course of five or six years it became obvious that the hoarding was only getting worse. By the time we’d been married 10 years, it had become an insurmountable barrier to a normal relationship. As the piles grew, so did the distance between us. Boxes, bins, barrels, jugs, bowls, cartons, jars, anything you could store stuff in, we had hundreds of. Every toy our kids ever owned, every piece of clothing we’d ever worn — shoes too — every tool or implement, every dish, it all got “saved.”


He spent most of his spare time outside. Forced to deal with more family responsibilities, I became resentful. Feeling more alone and ashamed of our house and beautiful rural lot, I began to hate him. I was constantly angry and stressed. He relieved his anxiety by bringing home more stuff. That only increased mine exponentially.


Compulsions are generally seen as a way to reduce anxiety or distress. But one big difference is that hoarders often don’t acknowledge the absurdity of the ritual. They may argue it’s not good to waste, explain they will read all the collected newspaper articles again or that someone in the future might be interested in whatever object they are discussing. More commonly, hoarders have anxiety when their hoard is threatened.

 

By Gina Moeller

My ex-husband exhibited no shame. I believe that’s because hoarding was acceptable in his family, even valued, although taken too far. I also believe he felt accepted because I made him feel accepted. I sorted and organized, but more effectively. The thought of breaking up our family terrified me, so I found ways to compensate. I’m smart. I was good at it. I just didn’t know why he was doing it or how to make it stop.

It wasn’t like we had a bunch of well-organized stuff; it was so chaotic and jumbled that we spent thousands of dollars replacing things we already owned but couldn’t find. For 16 years we lived in a house with at least one unfinished project in every room — a half-finished living room ceiling the entire time, no hang bars in the closets, no trim in the bathroom, not one caulked window.

 


His family and friends teased him. He wrote it off to jealousy. We became the dumping ground for everyone else’s stuff. Your old bed? Hell, yeah, bring it on out.


I began to realize it was never going away. Ten years in, I began to think about leaving. I offered ultimatums. Nothing changed. The saddest realization of all was that he could do without us, but not without his stuff.


Hofstra University’s Dr. Fugen Neziroglu and Dr. Jerome Bubrick wrote “Overcoming Compulsive Hoarding,” the first book to give practical, researched advice to hoarders and their families. According to their Web site, “Living with someone who compulsively hoards can often be as stressful of a lifestyle as it is to actually be a compulsive hoarder.” Unlike people with other OC Spectrum Disorders, hoarders are essentially unable to hide their “symptomatology,” especially from family members living in the same house.


That’s a kind way of putting it. We lived in a dirty, cluttered, dangerous and dysfunctional hell. We acquired additional storage (chests, lockers, garages and sheds) so we could regain functional living space. Right. Ironically, what happened next is what always happens in the absence of intervention and treatment: In the beginning those things were useful, but they too were eventually overrun with clutter.

Typically, the research reports, family members feel frustrated, overwhelmed and resentful. But other effects of compulsive hoarding actually affect the well-being of families.


He kept his junk outside our living space for a long time. It was when he started constructing garage-storage shelving in the living room that I got overwhelmed with anger. We lived in a tiny house anyway, less than 1,500 square feet, so the six huge wire bin shelves in our living room were oppressive. The house quickly became as junky as the yard.


His solution? Build an addition for our “big new bedroom,” another bathroom and, of course, plenty of new storage space. Our meager funds went toward getting this room under roof, the biggest room in our house.


The foundation was poured. He built the walls with windows and put on a roof. Then construction ended. Within six months, the room was filled to the ceiling. The industrial shelving was ceaseless. The room, about 14 feet by 26 feet and two stories high, was filled to capacity. You think I am exaggerating. I am not. No one was allowed “out back” because it was dangerous. He began hauling home truckloads of stuff from the machine shop, from other people’s houses, from random pickups in front of other people’s houses on “junk pickup day.” It never stopped until he had filled the room. We never lived in it. No bedroom, no second bath. Only more stuff.

Every compulsive has his or her own inscrutable quirks. For example, despite the general filthy state of things, my ex-husband never allowed a “dirty” pet in the house. Everyone, including my parents and his, had to remove their shoes upon entering so they wouldn’t track in dirt.


Certainly, the health and safety concerns associated with clutter can have tremendous effects on families. Embarrassment, frustration, resentfulness and hopelessness are just some of the emotions family members feel toward hoarders. By middle school, my kids quit bringing home all but their best friends, and by high school they brought no one home. My son had a girlfriend for months before he felt safe enough to let her see where he lived.


The research described us perfectly. It said families of hoarders often feel their home is not really their home. They are ashamed but have little control over cleaning it and are essentially forced to live amidst chaos. Family members will get so frustrated that they will attempt to clean or organize without the hoarder’s consent. Invariably, that leads to arguments and fights. Families face increased social isolation. Spouses often consider divorce or separation.


I did. I couldn’t take any more. It led to the complete disintegration of our relationship. His problems devolved into even more dark habits as the relationship deteriorated. He’d spend whole weekends among the stuff, only emerging to coach a youth sports team, to eat or watch a game. For the last three or four years, there was nothing between us, barely conversation.


I’ve read that spouses often wonder what their responsibilities are to the children involved. The children feel torn between the parents. They tend to keep the hoarding secret but feel depressed and angry and don’t know what to do with their emotions. As my ex-husband became more cruel and withdrawn, his only communications were tinged with anger or outright hostility. We could see our family slipping away.


I was exhausted emotionally, physically, mentally. We hated each other and it showed. I hated that crap he’d put before me, the kids, the house, everything. I could no longer express myself in writing, the very essence of my personality and career. I thought I had cancer. I had a lump in my throat that kept me from swallowing properly. My hair fell out in clumps. I constantly had diarrhea or constipation and gained almost 100 pounds over five years. The slow, inexorable decline happened in such small increments that I don’t think anyone really noticed.


The final straw came when my children began to mimic our ugly exchanges, to play out the drama unfolding before them, assuming the parts they had been born to play. As if compelled, they followed our lead.
Finally, I’d had enough. After years of individual therapy, I had a choice: Live with it, because he wasn’t going to change, or get divorced. I was ready.


I filed and made him move out. He had no money, nowhere to go but back with his parents. There was no question who the children would live with. Fortunately for us, there was enough salvable living space. It ended legally in 2002.


I know my ex-husband in his heart well enough to know his shame was overwhelming. Intellectually I could compartmentalize the hoarding and still see the man I loved. But emotionally it was too much. He has an untreated compulsion with no desire to get treatment. To this day, he hates that I discarded his stuff. I spent thousands of dollars to get things hauled away.


My children have recovered and are functioning beautifully. I have a new job, a new life and a renewed sense of self. I can write again. I am about to tear down this house and build a new one. It will be a brand new, clean house with very little in it.

Contact the writer at leo@leoweekly.com