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

by Matt Paxton;Phaedra Hise

  ▶ Sharing the Burden and the Rewards

  During Roger’s cleanup, his sister Kathy was always careful to say “we” when she was setting timeline goals and expectations. That way if the goals weren’t met, she could say, “We failed,” and share the responsibility with Roger. Hoarders have had so much failure in life already that they tend to easily assume more.

  She was also quick to praise Roger, not the team, every time he took a step closer to the goals. Roger was certainly aware of his failures; he had been hearing about them his entire adult life. Kathy emphasized his accomplishments and abilities, and didn’t dwell on his failings. She became his coach, and encouraged Roger to see himself as a strong person who had the power to change his life.

  From the earliest planning stages, hoarders should feel like they are equals in the process, because that establishes mutual respect. It also confirms a shared responsibility for the whole process. Hoarders who feel equal to the cleanup crew know that there are expectations for them, and they are a lot more likely to meet them when treated with respect instead of contempt or sarcasm.

  The cleanup person’s job is to equalize the relationship through both words and actions. My crew shares stories of our own flaws and mistakes. When I tell stories about how my gambling got me into deep trouble, I follow that up by telling the hoarder that I know what it feels like to need help. I say that I’m there to offer support, not judgment.

  We back that up with our actions. The house may be the hoarder’s mess, but equality means that everyone—hoarder and crew—steps up and takes on the responsibility for the cleanup. It’s one thing for cleaning helpers to say that they won’t be judgmental, but it’s much stronger to reinforce that by standing next to a hoarder and helping empty a refrigerator full of rotting food.

  Working side by side with a hoarder, without judgment, is like a continuation of the dialogue. It shows the hoarder that he or she has value and something worthwhile to offer to others.

  ▶ Control Is Critical

  At the start of every job, my crew and I thank the client/ hoarder for letting us help. This may sound odd, but we feel that it is important to acknowledge that the hoarder has made a choice to let strangers into his or her home, and that important decision initiates an entire change process.

  For years hoarders have been told (or perceive that they have been told) that they are losers, slobs, messy, and out of control. They need to take control back in order to gain self-worth. Late-stage hoarders in particular have usually hit a point in life where they’ve failed at a lot of things. They’ve spent years beating themselves up. They’ve lost control of their house, of their possessions, of their relationships, and sometimes their jobs, diets, even personal hygiene. A cleanup is usually their first opportunity in years to impose control on their world, and to prove that they can be winners.

  By having a sense of control over the cleanup, a hoarder earns back self-respect. Suddenly the hoarder has a team of supportive people in the house, listening to what the hoarder says. Instead of someone badgering the hoarder to throw items away, and complaining about the mess, people are handling things with care and asking where to put them.

  Positive reinforcement throughout the process underscores the idea of the hoarder taking control. Hoarders aren’t used to it, and it may take a while before they begin to hear and internalize compliments. But they need to feel confident, positive, and in control in order to maintain a clutter-free house.

  5

  THE PLAYERS: RECRUITING A TEAM

  The best-laid plans for a cleanup are only as good as what can be achieved by the people involved. In the previous chapter, we touched on the importance of having the hoarder as fully engaged as possible and the value of a strong support group of family and friends. But many of the aspects of a hoarder cleanup are beyond the capabilities of this core group, which means experts and professionals will need to be engaged in order to deal effectively with the emotional, psychological, legal, and physical issues.

  A CONCERNED—AND PERSISTENT—NEIGHBOR

  Daisy was an eighty-five-year-old retired schoolteacher who had been living by herself on a fixed income for many years. As frugal as she was tiny, she had spent the last two decades hoarding everything and anything in her efforts to save money, and with the secret hope that some of what she saved might be valuable or useful someday. Someone once told her that she could turn her old newspapers in for cash, but the piles of paper had become unmanageable. She saved soda bottle tops to donate to fund-raisers. She “recycled” (reused) her adult diapers. Daisy was just trying to save every penny possible and, in the process, filled her town house to overflowing.

  Piled almost to the ceiling, the cleanup crew was afraid of what they’d find under all of Daisy’s clutter.

  One morning Daisy’s neighbor noticed the frail and elderly woman struggling with her front door, obviously trying to get back into her house. She asked if Daisy needed help, and kept asking what she could do even when Daisy insisted that nothing was wrong. Eventually Daisy admitted that she was blocked from reentering because something had fallen against the front door, and neither she nor her kindly neighbor was able to budge it.

  When asked, Daisy told her neighbor that she had no family and really nobody else to call for help. But after a while, she said that perhaps her pastor would be the best person to contact. When her pastor arrived some time later, he could see, even through the front window, the terrible state of the house. He immediately made his first of many calls to Adult Protective Services to find out what help might be available. APS, in turn, got Daisy a social worker and put her up in a nearby hotel while they figured out what to do next.

  The social worker became Daisy’s main advocate. She put together Daisy’s team, starting with county building inspectors. The inspection resulted in condemning the house, which, ironically, made Daisy eligible for county support services and triggered a local government process designed to fix up homes to allow residents to continue to live in them.

  The social worker also connected Daisy with affordable medical care, so that she could get back on her medications and have regular checkups, both of which she had given up. Given her advanced years and late-stage hoarding, the social worker knew that Daisy wasn’t likely to change her ways, so she didn’t seek counseling help for her but rather focused on getting her a safe, clutter-free house, medical care, and a caretaker to help keep Daisy’s life in order.

  In addition, the social worker also engaged the services of a financial advisor whose job was to figure out Daisy’s financial situation—how much money she had and what she owed—to see if she could continue to live on her own. And the social worker also called my company to clean out Daisy’s house.

  During the cleaning, the building inspectors checked in every other day to verify that the house was safe and to evaluate what repairs needed to be made. The financial planner came to collect important paperwork. The social worker stopped by each day to make sure Daisy was stable, emotionally and physically. She was also making sure that the cleanup crew was finding and passing along Daisy’s family silver and lost checks. A rotating group of about thirty fellow church members came to work alongside my crew and help move boxes and haul trash. The pastor arranged for a volunteer construction team to repair damage from a twoyear-old water leak. And the friendly neighbor who first discovered Daisy’s problem popped in now and again to see how she was doing.

  Daisy was one of the fortunate ones. Even though her hoarding had gotten to such an extreme and she was having many other problems, she was lucky to have a watchful and helpful neighbor, a responsive pastor, and a superb social worker who were able to set the wheels in motion for a good outcome.

  THE TEAM ROSTER

  Every hoarding situation is unique. Who needs to be involved will depend on many factors. The most effective teams will include a range of participants, from family and friends, to social workers and community support services, to county officials and professional cle
aning services. Depending on the circumstances, many of the services may be available at no charge or the cost will be underwritten by a government or social agency. Whatever the case, knowing who to call on and what you can expect from them can make all the difference in the success of any endeavor.

  ▶ The Family

  Li was a widowed grandmother who was living alone in a crammed-full three-story house in rural Connecticut. She had always been a passionate shopper, but her hoarding had escalated after her children moved away and her husband died. Her eldest daughter, Sunny, along with her five sisters and brothers had spent years trying to get their mother to clean up. Nothing worked until the children figured out how to persuade their mother to act by presenting her with what amounted to a business plan—a plan that appealed to Li’s innate sense of order, which had gone terribly awry. The plan identified the items they wanted to locate in the house, like some investment papers, family jewelry, and photographs. It pointed out how much more valuable the house would be if it was cleaned and maintained. And, after consultation with their mother, the children called me in.

  The day my cleaning crew arrived, one of the sons took Li to his house to minimize her stress. Meanwhile, his wife and a sister stayed at Li’s house, working alongside the cleanup crew, putting in twelve-hour days of sorting and hauling.

  Although this was one of the fullest houses I’ve ever done—and chasing out a family of possums that had moved in was a bit unnerving—it was also one of the easiest. There was just no drama and no negativity from this family, which I’ve seen so many times. Families dealing with hoarding can dissolve into finger-pointing and blame under much less stressful conditions. Instead, Li’s children were focused on what their mom wanted and needed.

  Supportive, helpful family members are invaluable, as helpers and as emotional support for the hoarder. Family members who nag or blame shouldn’t be part of the team. Hoarders have already had plenty of negativity; the cleanup should be as positive an experience as possible.

  In Roger’s case, his sisters decided that they and their husbands would be the core of the team. They undertook the research to determine who else could help: professional cleaners, therapists or social workers, and officials. They decided to include a Realtor to come assess the house and tell them what needed to be done before it could be listed for sale. After that they brought in some workers to estimate the cost of repairs.

  Roger’s sisters knew that helping their brother meant more than just getting the house cleaned. Sure, extra hands are useful on cleaning day, which is why they wanted a cleaning crew or other volunteers. But more important is the emotional work that continues long after the cleanup has ended. They knew that spending time with Roger afterward would be critical to helping him learn how to socialize again and encouraging him to find a more positive activity to replace his hoarding behavior.

  Roger’s sisters understood instinctively that if they started with Roger and then quit, it would become yet another loss and failure for him. They all committed to stay the course because to start and then abandon their brother would have been worse for him than to not start at all.

  ▶ Friends, Neighbors, and Coworkers

  During Daisy’s cleaning, she was visited by the neighbor who had helped her when she got shut out of the house. The neighbor had never seen the inside of Daisy’s house and was shocked at how bad the hoarding was. Although the neighbor asked how she could help, Daisy didn’t want her involved in the cleaning itself.

  A cleanup is deeply personal for the hoarder. The best team members are close family members, and after that the circle can widen to include specialists who can help with certain aspects of the job. Inviting acquaintances, coworkers, or extended family to help usually adds to a hoarder’s anxiety level. The hoarder is already worried about being judged by family and doesn’t usually respond well to opening up this secret life to the world at large.

  The members of the team should be as discreet as possible about the cleanup. There are likely many acquaintances who don’t know about the extent of the hoarding, and it would be inappropriate for anyone involved to betray the hoarder’s confidence and risk changing the nature of the hoarder’s relationship with coworkers, neighbors, or others for the worse. There are always jobs that extended family or friends can do that may not directly involve the cleanup per se, like bringing meals, making phone calls, or running errands.

  Once the cleanup is done, a hoarder will need relationships that are based on something besides hoarding. Having “outside” friends that draw a hoarder in healthy new directions is an important element of long-term success.

  For a family trying to save money on a cleaning, a team of trusted volunteers can work, but they should be chosen carefully and with the consent of the hoarder. It’s important to remember that this is the hoarder’s team, not the family’s team. The hoarder will be spending long days with this crew, making tough decisions on very personal items. The hoarder needs to feel safe and comfortable. By the end of the cleanup, these team members will essentially be this person’s closest friends, and it is important that they stay in touch with the hoarder post-cleanup.

  ▶ Clergy

  In Daisy’s case, that pastor at the church that she had attended for more than a decade acted as an informal social worker early on. He had her best interests in mind, and he took the time to find out what support was available to help her. He was also the only person who had her immediate trust, and he was able to pass that to the others he brought into the cleanup. It’s important to take advantage of “trust swapping” if the hoarder is already connected to someone, because establishing trust takes a long time.

  Members of the clergy and other spiritual advisors are often trained to help with both emotional and logistical support. And because they are already trusted by the hoarder, they become important in the short term to help get things moving—and as ongoing support for the hoarder. A priest or minister has access to lots of local resources, not just city programs but also private programs or even individuals who want to help in some way. Many churches and other religious institutions have special support for those in need, like temporary housing quarters, feeding programs, or volunteer construction crews like the one that repaired Daisy’s house.

  In addition to the professional cleanup crew, Daisy’s kitchen required a lot of labor, much of which was provided by supporters from her church.

  Daisy’s pastor also spoke from the pulpit about her need, and recruited a revolving team of volunteers who helped with the actual cleaning.

  A hoarder’s place of worship can also help reconnect him or her to the community at large. Daisy, for instance, volunteered for the feeding program at her church. Working with people in need helped Daisy feel good about herself and realize that she was more than just a hoarder. She felt confident that she was working toward building a worthwhile life, where she could help people and connect with others.

  Even hoarders and families who aren’t strongly religious might consider reaching out to a priest or minister for help and information about community support. Getting involved in a church will also create a support network for when the cleanup is complete.

  ▶ The Therapist

  Thalia is the Stage 5 hoarder from Pennsylvania who had been a political volunteer—and saved pretty much every bit of paper from every campaign on which she had worked. (She is also our case study for high anxiety in Chapter 2.) During her cleanup, she asked for frequent stops and retreated to a bedroom. Her family members told us that her behavior was pretty typical, that she had been under a therapist’s care off and on for years, and that she had a history of suicide threats and attempts.

  The second day, Thalia fell completely apart. As soon as the crew approached her to make decisions about her stuff, she panicked. She ran outside and locked herself into her car, which was also full of bags, clothing, and memorabilia. As we stood outside the car and tried to get her to open the door, she started trying to open a bottle of pills, threa
tening to swallow them.

  Because of Thalia’s unstable mental state, we made sure that her therapist was on call during the cleanup, and it was the therapist who was able to talk Thalia out of taking the pills, and out of the car. At the therapist’s insistence, Thalia was committed and spent the next few days in the hospital.

  As extreme as Thalia’s case may be, it is not uncommon for advanced hoarders to be wrestling with some deep psychological issues that will surface during the stressful time of the cleanup. Any hoarder with a previously diagnosed or suspected mental disorder, like OCD or depression, should have the support of a good therapist whose professional training will make him or her a critical and still impartial member of the team. In many cases, the therapist not only helps the hoarder directly but can manage the high emotions of the whole team.

  ▶ The Social Worker

  Sam and Wendy met at church when both were in their seventies. When they fell in love, their children didn’t have a problem with their racial difference. What shocked Sam’s family was the condition of Wendy’s house. When Sam moved in, the house was so cluttered and decrepit that they worried about his safety.

  Both Sam and Wendy were strong-willed people. Sam made a commitment to stick with Wendy even though she simply wasn’t interested in undertaking a cleanup. In frustration, Sam’s daughter finally called the county to report Wendy’s house. While this move could have alienated Sam from his daughter, it turned out to be the best move because it brought an empathetic social worker into the picture.