Stuff (22 page)

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.

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 thrown 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.

The instructions Susan gave to Edith and her family for the cleaning were straightforward. Anything they absolutely wanted to keep should be removed from the apartment before the cleaning. Anything left in the apartment would be kept or thrown away at the discretion of the cleaning crew.

We set out early on a warm summer morning, heading to Edith's midtown Manhattan high-rise. Susan was determined that this cleaning would take place. She worried, and rightly so, that if the conditions inside the condo did not improve immediately, the effect on Edith's already poor health might be devastating. Susan carried with her all of the court orders and paperwork. She knew it was likely the police would be involved, and she wanted everything well documented. If Daniel attempted to interfere, she would have him arrested. Outside the building, we met the four-man cleaning crew and headed up the five flights to Edith's condo.

Gerontology is the study of aging and its associated problems. In the gerontology research literature, the hoarding of rubbish is referred to as "syllogomania." (
Sylloge
is Greek for "collection.") Syllogomania is widely regarded as one marker of self-neglect among the elderly, along with poor personal hygiene and squalid living conditions. In the early 1960s, two British gerontologists described seventy-two cases of what they called "senile breakdown syndrome." The cardinal features of this syndrome, which they believed to afflict only the elderly, included severe deterioration in both personal hygiene and living conditions, often accompanied by hostility, isolation, and rejection of the outside world. A common feature of these cases was syllogomania.

Somewhat later, another British gerontologist coined the term "Diogenes syndrome," after the ancient Greek philosopher Diogenes of Sinope (fourth century
B.C.E.
), who was reputed to have traversed Athens looking for "an honest man." Diogenes rejected most social conventions, preferring a hermetic existence and eschewing any form of luxury. For a time, he supposedly lived in an olive oil barrel rather than a house. His indifference to his living conditions probably led to his name becoming synonymous with domestic squalor. However, Diogenes showed no inclination toward syllogomania. In fact, the Cynics, the school of philosophy typified by Diogenes, believed that happiness could best be achieved by living without possessions.

The Diogenes syndrome includes poor personal hygiene, domestic squalor, and syllogomania. (Other names for this syndrome include "senile recluse syndrome," "extreme self-neglect syndrome," and "social breakdown syndrome," although all of these names portray the condition inaccurately, as the syndrome is not restricted to the elderly and involves more than self-neglect or social inadequacies.) More recently, gerontologists have begun to refer to these symptoms separately rather than as a syndrome. The term "severe domestic squalor" has been suggested to distinguish it from neglect of personal hygiene and hoarding, both of which can occur without squalor. In fact, Daniel displayed two of the three Diogenes syndrome features—domestic squalor and syllogomania.

For many years, gerontologists believed that the Diogenes syndrome resulted from other problems, such as schizophrenia, dementia, or frontal lobe damage, and in fact nearly half of the cases do. But more than half occur in the absence of these disorders. The Diogenes syndrome is not related to income or intelligence. It may be precipitated by life events, such as the death of a caregiver or a serious illness, but these events don't cause it. One theory holds that certain personality characteristics, such as suspiciousness and obstinacy, may be the bedrock of the syndrome. Daniel had both of these characteristics, but most striking was his lack of awareness of any problem associated with his behavior.

The crew had an efficient system for cleaning such homes. They commandeered one of the building's elevators and lined it with heavy blankets to keep it clean. They brought hundreds of large, sturdy trash bags and set about stuffing everything in sight into them. Once full, the bags were tied off and put in the hallway. When enough bags collected there to fill the elevator, they took them down to the street. There they piled the bags beside a truck. (In the center of the city, trucks are more efficient than dumpsters.) The workers seldom spoke and clearly did not want to be spoken to. Benjamin, their supervisor, showed up midway through the process. He told me that his company had a contract with the city to do cleanings like this, and it kept them very busy. This apartment was worse than some but not as bad as others he had seen. "We did another one in this building just last week," he told me. "It was worse than this."