Stuff

by Gail Steketee

  Even so, she resisted any suggestion that she throw away things such as newspapers without reviewing them for important information. "Don't ask me to do it," she begged. Doing so would make her feel guilty and give her a sense of losing or missing out on something important. She saw no need to experience such distress. In our work together, she wanted me to help her process her possessions in the careful way she had always done it. In a sense, she wanted me to engage in hoarding with her rather than work to change her behavior.

  Nell's progress in therapy was slow at first, mostly because her efforts involved spending a lot of time doing the elaborate reviewing and checking that were part of her hoarding. It was not until we did an experiment on experiencing distress that things began to change. Nell had picked up a free newspaper at the supermarket. The newspaper was a community-based publication containing articles and announcements of interest to senior citizens. It had information that might be useful to Nell, but she agreed to discard it and keep track of her distress. The purpose was to see whether her level of distress matched what she expected and whether the distress lasted as long as she thought it would. As we always do in such experiments, I asked Nell to rate her distress on a scale of 0 to 100, where 0 equaled no distress and 100 equaled the most distress she could imagine. Immediately after discarding the paper, she rated her distress at 85. Five minutes after that, it was down to 80. After ten more minutes, it was at 60, and six days later she reported her distress as 15. Although her initial distress was high, in less than a week she had little distress about losing this information. The experiment seemed to rejuvenate Nell. Suddenly, she was able to get rid of more stuff, to discard things without poring over them meticulously. She began to make real progress in therapy.

  Another milestone in Nell's treatment occurred when she decided to allow a marathon cleaning session at her home. Her most productive time in working on hoarding occurred when I visited. Most of that time, I simply talked with her and walked her through the steps involved in discarding. Like many hoarding clients, she did not want me touching or deciding about her things. But to make quicker progress, she agreed to experiment with allowing me to make decisions about which things could be thrown away. Normally, we don't make such decisions for clients, but in Nell's case, part of her fear was of other people taking control from her. Facing that fear meant allowing someone else direct control over some of her possessions. After the first such session, I received a frantic phone call from Nell, who was angry with me for putting something in a place where she could not find it. She had found it by the time she placed the call but still wanted to express her displeasure with me. After that, however, she gave up some of her rigid control over her things and allowed me to touch them and even make discarding decisions about them.

  A similar thing happened with Irene, who had ended a friendship when someone she'd asked to help her clean had picked up an empty gum wrapper from her floor and discarded it without her permission. By the end of her treatment, when Irene trusted me fully, she allowed me to pick up items and even make decisions about whether to keep some of them.

  By the end of our treatment study, Nell had made great progress. Her entry hallway was reasonably clear, her door opened without any problem, and she didn't have to walk on a layer of stuff to get to her living room. The living room itself went from being about chest-high with clutter to having cleared furniture and floor, with only some residual clutter. Open floor space was visible in her bedroom and kitchen as well, and she could once again cook in the kitchen. She had stopped collecting newspapers and magazines. Although Nell had improved, she was still unable to get rid of much of what she had, especially her Tupperware. We moved these items to her basement, out of her main living area, where they formed what she christened "Mount Tupper."

  Anxiety, sadness, grief, and guilt are all part of the human experience. When people go to great lengths to avoid them, the results can be devastating. Avoiding distress is a key feature in the development and maintenance of hoarding. It reinforces the belief that the feelings being avoided are intolerably bad, and at the same time it weakens the person's strength to cope with those feelings. Avoidance is a seductive coping strategy that works temporarily but ultimately undermines progress.

  9. YOU HAVEN'T GOT A CLUE

  When I'm trying to decide what to keep, this outdated coupon seems as important as my grandmother's picture.

  —Irene

  We could have found the apartment just by following the powerful musty odor that hit us as we stepped out of the elevator. When we got to the door, my guide knocked. No answer. She knocked again, then a third time. I thought of the Collyer brothers, who never answered their door. Finally, a small voice inside said, "Who's there?"

  "It's Susan, the social worker. We're here with the cleaning crew. They're here to clean out your apartment."

  "Daniel's not here," the voice behind the door told us. "He went to get us breakfast."

  "That's okay. We don't need him to be here."

  She opened the door just a crack, and the door frame moved, almost imperceptibly. Yet it didn't really move. The world seemed to shift just a bit, and I felt off balance for a moment. The door opened a bit wider, and then I saw them—cockroaches, thousands of them, scurrying along the top of the door to get out of the way.

  The door opened the rest of the way. The apartment was dark, and it took a moment to appreciate what was inside. No floor was visible, only a layer of dirty papers, food wrappers, and urine-stained rags. A rottweiler bolted out of the back to see what was going on. He jumped over a pile of dirty clothes—at least they looked like clothes. From the edge of the door, the massive pile of junk rose precipitously to the ceiling, like a giant sea wave. It could have been part of a landfill: papers, boxes, shopping carts, paper bags, dirty clothing, lamps—anything that could be easily collected from the street or fished out of a dumpster. It was one solid wall of trash twenty feet deep, all the way to the back of the apartment. There must have been windows on the far wall, but they were darkened by the broken fans, boxes, and clothing covering them.

  Inside the condo the sweet, pungent odor of insects and rotting food enveloped us. Susan had instructed me to wear old clothes that I could throw out afterward. I was grateful for the advice but wished I'd also had a facemask—the heavy-duty kind.

  I could feel the cockroaches surrounding me as I stepped in. The walls were coated with their brown dung, and occasionally one dropped from the ceiling onto the piles of debris below. I walked farther in to get a better look at the kitchen, or what I thought was the kitchen. It was impossible to tell, since everything was covered with bags. Food, mostly old and rotting, empty but unwashed tuna cans, and colorful coupons adorned the room. There was a path into the kitchen, though it was atop six inches of trash on the floor. I was afraid to touch anything. I suddenly felt a great deal of sympathy for all the people I'd met with contamination phobias: This must be what it feels like, I thought.

  Susan, the court-appointed guardian of Edith, who had struggled to open the door for us, had obtained a judge's order for a "heavy-duty cleaning" because she believed that Edith's health and safety were in danger and no more moderate measure had succeeded in improving the horrific living conditions in the condo. Edith wasn't responsible for these conditions, nor was her sister or her son, Tim, both of whom lived with her. It was all her brother Daniel's doing. And Daniel didn't see anything wrong with the place. "All of this stuff we can use," he insisted. "There is nothing wrong with our home."

  Indeed, all four adults living in the five-room condo had become so habituated to the squalor that they barely noticed it anymore. Edith insisted that she was "fine," even when her visiting nurses refused to enter her home to help treat her diabetes. The family was so blind to the severity of the problem that social services took the unusual step of appointing a legal guardian for Edith, a competent adult who lived in her own home.

  People who live in squalor and don't appear to notice it exhibit th
e most dramatic form of clutter blindness. How could Daniel not recognize the bizarre and unhealthy state of his home? How could Edith defend him? Most people who hoard save things that don't decay and aren't particularly dirty, such as newspapers or clothes. In our study of hoarding in the elderly, we found that less than a third of the cases lived in squalid conditions. In younger samples, the proportion is even lower. But some people, like the fifty-year-old Daniel, collect dirty and rotting stuff that invites insects and rodents.

  Daniel scavenged his stuff from the streets of Manhattan, mostly from the piles left at the edges of sidewalks for the city trash crews. Anyone walking these streets can see that some of the things piled there have value. Many people avail themselves of these treasures, descending on neighborhoods early in the morning on trash day. But Daniel collected the stuff no one else wanted—broken fans, pieces of lumber, food containers, ripped and dirty clothes. On top of his daily scavenging, Daniel wouldn't allow empty and unwashed food containers to be discarded. Instead, he deposited them on the floor.

  Since most of the people we see in our research come to us in search of help for their problems, we seldom encounter people who are completely unaware of their hoarding. But in the social service and public health sector, such cases are the norm. Recently, I attended a local task force meeting about hoarding problems in communities in western Massachusetts. The meeting was attended by representatives from elder and adult protective services, housing and public health departments, and the courts. These officials deal with the toughest hoarding cases, people whose overstuffed homes endanger them and anyone living nearby. The representative from adult protective services, a woman who had handled dozens of hoarding cases in the past few years, remarked that she had never met anyone who actually recognized his or her hoarding problem. Others in the room nodded in agreement.

  Clinicians describe individuals such as Daniel as lacking insight, meaning that they don't understand how their behavior harms them or others around them. Most psychiatric conditions that are associated with lack of insight involve deterioration in cognitive functions—people who lack mental capacity, as in schizophrenia or dementia. But there are a few exceptions. For example, people with alcohol or drug problems or those concerned about their appearance (anorexia or body dysmorphic disorder) do not usually lack cognitive abilities. Their reasoning and thinking about most things is just fine; only when it comes to their alcohol or drug use or their body image do they lack insight. Hoarding may be another of these highly specific insight problems. The lack of insight in hoarding appears to be narrow, applying only to the clutter and varying by context. When outside their homes, many people who hoard recognize that they have a problem, but when they are at home and looking at objects they should get rid of, they can't see the problem.

  Among social service workers dealing with non-insightful hoarders, attempts to get these clients to recognize the seriousness of their problems are largely ineffective. No amount of reasoning, cajoling, bribing, or arguing has any effect. Week after week, the conditions in these people's homes stay the same or get worse. If the situation becomes bad enough and there is little hope of improvement, officials are forced to seek a court order to clean out the home.

  Edith and Daniel

  In New York City, when a hoarding case has worked its way through the legal system, the judge can order what is called a "heavy-duty cleaning," in which a social worker or health department official arranges for a cleaning crew to come in and clear out what they deem to be garbage, trash, or other unacceptable items.

  The case of Edith and Daniel was a complicated affair involving medical and psychiatric illnesses, housing and health code violations, and dysfunctional family dynamics. The client that the city's social services commission was trying to protect was Edith, a fifty-two-year-old woman who owned and lived in a two-bedroom condo in a fashionable area of Manhattan with her sister, her son, and her brother. She had lived there for more than thirty years. Though plagued with depression for most of her life, she had managed adequately with the help of her husband until his death five years earlier. At that time, her sister had moved in with her and Tim after becoming too sick with diabetes to live alone. Shortly thereafter, Daniel had moved in. Edith's meager disability payments barely allowed her to keep up with the condo fees. Although her brother and sister both received disability payments as well, they did not contribute to the household. Her son worked part-time, but he also did not contribute financially. The condo association filed papers to have her evicted for nonpayment of condo fees.

  In addition to depression, Edith suffered from diabetes, which left her with limited eyesight and a nearly useless left leg. She relied on a cane to get around the cluttered apartment. Because of her medical problems, she received home health care services to help with basic daily functions, such as getting dressed, washing herself, and preparing food. However, when the conditions inside the condo deteriorated to a certain point, the home health care workers terminated their services. They believed that the condo was unsanitary and unsafe, and things were getting worse.

  Their action resulted in a petition by the social services commission to the New York Supreme Court to have Edith declared an incapacitated person, a declaration that would result in the appointment of a guardian. Judges appoint guardians reluctantly, because doing so strips people of their rights to make all decisions about health care, finances, and possessions. Neither depression nor diabetes would normally trigger guardianship, but when the court evaluator visited Edith's condo, he was so shocked by what he saw that he told the court that all of the people living there were in danger. He felt that Edith was being forced to live in these conditions by a manipulative brother and sister and an abusive son. As a result of his report, Edith was declared incapacitated, and a guardian was appointed.

  Guardians in New York City walk a thin line, trying to protect people without taking over more of their lives than is absolutely necessary. Hoarding cases make that line even thinner and more precarious. Edith's guardian, Susan, was now responsible for her well-being: if something happened to her because of the clutter, such as a serious fall or a fire, Susan would be legally responsible. But neither Edith nor her family members were willing to acknowledge the danger, and they fought any intrusion tooth and nail. Susan was an experienced social worker, however, and she knew that Edith's life was in danger. She immediately went back to court to get an order to clear out Edith's condo.

  Most of the stuff that filled the condo belonged to Daniel. He'd moved in with her two years before because he'd filled his own apartment with things scavenged from the streets, and it was no longer habitable. Although Edith's condo was now full as well, he collected new items daily. Everyone outside the family—nurses, social workers, and lawyers—begged Edith to kick Daniel out, but she refused. She claimed that she depended on him to pay her bills, and furthermore, as she told me, "he's family, and you can't abandon family." Edith's sister felt differently. She hated Daniel but felt powerless to kick him out.

  Social workers responsible for cases such as Edith's are usually very reluctant to go into their clients' homes and throw away the things they have collected. A forced cleaning temporarily improves the condition of the home but seldom changes the behavior that created those conditions. In short order, the home fills up again. Furthermore, such cleanings are traumatic events that leave the inhabitants grief stricken, frustrated, and fearful of authority figures. For social workers, who usually choose their profession to ease people's suffering, being responsible for this trauma is painful.

  Heavy-duty cleaning is a big business in New York, and private companies offering these services can make a lot of money. Cleaning out a big house can run upwards of $50,000. The crew handling Daniel's case averaged four such cases every day. Even so, their first attempt at a heavy-duty cleaning of the condo failed. Susan sent a less experienced social worker to supervise, and when the cleaning crew arrived, Daniel insisted on taking over. He allowed little to be th
rown away, and the crew quit in frustration. The shell-shocked social worker could do little to prevent him from interfering.

  A veteran of many such cases, Susan knew that she couldn't leave Edith's case in the hands of a novice again. She combined a tough-minded, no-nonsense approach with an ability to charm her mostly middle-aged and elderly clients. They liked her despite the fact that she took them to court kicking and screaming to arrange heavy-duty cleanings. They stopped by her office frequently to see her, mostly with minor excuses or complaints. She often took them to lunch and listened patiently to their problems.

  But Susan was frustrated. She knew that the cleanout of Daniel's trash was not a solution but only a temporary fix. Unless something else happened, the home would fill up again. She desperately wanted a strategy that would work and avoid the trauma these cleanings normally produced. It was for this reason that she asked me along for the second attempt, despite my protest that I had no better solutions for someone who refused help.

  Edith's relationship with Daniel was complicated. Daniel's collecting had created problems for the family before. When their father was alive, he protected Edith from Daniel, knowing that Daniel would take advantage of her. Edith's husband also refused to allow Daniel into their home. But now that her husband was gone, Edith passively accepted all of Daniel's eccentricities, never having developed the ability to stand up for herself.

  Susan had visited Edith several weeks earlier, before the first attempted cleaning. Just getting into the apartment to see her was an ordeal. When no one answered her knock, she threatened to call the police. Edith's sister told her to come back later when they could contain the dog, a large and aggressive rottweiler owned by Tim. When Susan insisted, Edith's sister locked the dog in the bathroom and opened the door. Susan couldn't see much of the room because of the wall of cardboard, clothes, papers, and junk. Edith was nowhere to be seen. When Susan called out to her, she answered from behind the wall. Susan learned that just before one of Daniel's more successful forays, Edith had lain down on a couch in the living room for a rest. By the time she awoke, the wall had been erected. Edith carried on a conversation with Susan from behind the wall. She insisted that she was okay and would not allow Susan to clear a path through the debris.