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

by Matt Paxton;Phaedra Hise

  Jackson, the early-stage Blondie hoarder, along with his partner, Mike, had simple goals—to clean and repair Jackson’s house, sell it, and help him learn some methods for limiting his hoarding. The overall goal was for the two to spend the rest of their lives together, and both were committed to doing whatever it took to make that happen. In this case, Jackson’s outlook for recovery was very positive. He had strong support from Mike, and he had powerful motivation to change because he wanted the better future that was available to him.

  Early-stage hoarders, like Jackson or Ellen and Brad, the couple we first met in Chapter 1, are more likely to achieve the goals of a clean house and a relatively normal life than more advanced hoarders. Hoarders like Roger and Margaret have either spent so much time in clutter or are carrying so much emotional or psychological baggage that it is usually not realistic to expect much more than a relatively safe environment in which they can live and enjoy some level of social improvement.

  Success or failure will be defined by whether or not everyone meets those expectations, but even then a family’s definition of success may change throughout the planning and cleaning process.

  All goals (except in an intervention) should be about the hoarder. If a family’s goal is to get that eyesore of a house clean so it doesn’t embarrass them anymore, then clearly that’s more about them and not about the hoarder. To get the hoarder on board, the goals need to be ones that that individual can buy into, like having a working kitchen, or being able to invite people into the house, or complying with health and safety standards that have been imposed by the authorities.

  ▶ Goals for the Cleanup

  Jackson and Mike’s primary goals focused on the elements of the cleaning. Together they wrote down their plan for who they’d hire to help, how long it would take to clean the house, how many days the team would work, and what days they would take off. They wrote down what Jackson would do with the clothing, collectibles, and other specific items that they’d decided to donate, sell, or toss.

  Their plan even specified where the items coming out of the house would be staged while Jackson made decisions about them, or while waiting for someone to take them to a donation site or sell them. Jackson’s house didn’t have much trash, but the plan addressed where things would go, who would haul them to the dump, and when.

  Writing down these details was helpful because Jackson and Mike could refer to them during the cleanup in case there were misunderstandings. If Jackson suddenly decided to keep all of his Versace shirts, Mike could point to the list and say, “See, we agreed to sell those.” They also shared the written plan with the cleanup crew before cleaning day so they could decide how to structure the job.

  Sometimes a job is so big that it is like staging an event, and the logistics can be as overwhelming as the clutter itself. That’s where a professional can help organize and carry out the cleanup.

  ▶ Goals for Health and Wellness

  Wendy and Sam were an elderly couple who met late in life and started living together in Wendy’s Stage 3 hoarded house. Wendy was a pill hoarder, and they both had multiple medical issues requiring pills, so the plan for them included health-related assistance. Since their medical concerns were being handled poorly, they needed a private duty nurse to help figure out what to do and how to schedule ongoing health care. Physically, they required clear access into and through all the rooms in the house, and they needed to have safety equipment installed, like grab bars in the bathtub. Of course, Wendy required some kind of counseling for her hoarding to ensure long-term relief.

  Daisy, another aging hoarder, needed a plan that included counseling, advice about insurance, medical treatment, and medication. As with many elderly housebound people, Daisy, Wendy, and Sam potentially required home health care, and their places needed to be clean and safe enough to allow visits from medical aides and other helpers.

  ▶ Goals for Living

  Kathy and Roger let the cleanup crew handle most of the logistics of their de-cluttering. In their plan they focused more on setting life goals: where Roger would live, what his life would look like, and how to get there. The goals were specific, like putting their parents’ house on the market within four months, finding a new place for Roger to live by then, and having Roger apply for at least one job within a month after moving.

  Deadlines are often essential to motivate people to get things done—whether it’s the hoarder or the support group. But they should be reasonable. If a hoarder feels trapped by unrealistic timelines, he or she may shut down the whole process before it really gets started. (We’ll discuss more about setting start dates in Chapter 6.) Even a Stage 5 hoarder house may take a professional crew only a few days to clean out, but this kind of short deadline increases a hoarder’s stress level—and the risk that he or she will sabotage the whole enterprise. The hoarder isn’t prepared to think in such a short time frame for such an emotional undertaking. Thirty to sixty days is easier to accept, and if the house gets clean faster, then everyone wins.

  A late-stage hoarder in particular, who has been withdrawn from the world for years, isn’t going to jump right back into the stream of society just because the house is clean. Life goals take time and patience to achieve. Advanced hoarders need help getting back into society, which may mean creating a structured setting in which they can learn to socialize again, such as volunteering their time and talents for a limited amount of time each week. Or encourage the hoarder to host a coffee at the house two months after the cleanup. The simple act of sending out the invitations reconnects the hoarder with lost friends, and commits the hoarder to following through with the event.

  TALKING TO HOARDERS

  The hoarder is a critical part of the goal-setting process, but those conversations can be tricky. Often a late-stage hoarder insists on living alone, but the family questions whether or not that’s safe or even possible.

  Sometimes, running the numbers can help make the decision. Look at what it will cost to fix up the house and make it safe. Often that’s a huge amount. A family can put that in front of the hoarder, asking if the hoarder would rather spend money on that, or on a comfortable retirement home. The hoarder should make the decision. Usually there’s not even a discussion because the cost to repair the home is more money than the hoarder has.

  Both Roger’s sister and Jackson’s partner understood that in the beginning they had to set goals cautiously. Mike knew that Jackson’s house could be clean in a few days, but he gave Jackson three months. Kathy set modest expectations for what Roger’s life would look like after his cleanup. If a goal isn’t achievable, then it becomes another failure for a hoarder (and the cleaning team and family). Instead, the cleanup needs to be their first success on the road to a new life.

  Jackson, like most hoarders, didn’t reach out for help himself. More often it’s a concerned family member, friend, or social worker who calls a therapist or cleanup expert. When that happens, the hoarder generally isn’t ready yet to start the process, and things play out with ultimatums, secret cleanups, ambushes, or interventions.

  The best chance of creating a collaborative effort is to engage the hoarder early on. It’s important that the right contact person (or people) talk to the hoarder. Since some kind of discussion may have already taken place, it’s likely that the person closest to the hoarder has a sense of how open the hoarder is to talking about it. If those early conversations don’t go well, then someone else might have to come into the picture.

  It rarely works if a family member talks about how the hoarding affects others. Hoarders just tune out the chatter about how embarrassed others are, or how the hoarding affects property values. They already know that, but it’s not enough to make them take steps to deal with it. Just as with fighting an addiction, the desire to change has to come from within.

  ▶ Starting the Conversation

  In hundreds of hoarding jobs, I’ve never had one where a family member said, “Hey, I’m worried about you,” and the hoarder r
esponded, “You’re right. Let’s clean up!” There is always more than one conversation. The early ones may not go well, and the hoarder is probably going to respond with a lot of denial. It’s important to just keep coming at it with the same message of love, concern, and offers to help.

  Jackson told Mike about his “messy house” early in their relationship, but he never let Mike see it. They dated for about a year before Mike decided to begin pushing Jackson to open up about his issues. Although his hoarding was a big issue in his life, it didn’t define who he was. Still, Mike’s approach was the best. By confiding in Jackson that he cared about him and that he was concerned about the direction the clutter was going—and offering to help however he could—he acknowledged the problem but didn’t force the issue prematurely.

  Even with an early-stage hoarder like Jackson, it took a good six months of conversations for him to get comfortable talking about a possible cleanup. Mike would mention the house, and tell Jackson that they needed to deal with it to move forward. Jackson would agree in theory, but not set a date or timeline, and then Mike would back off. Or Mike would ask to see the house, but Jackson wouldn’t commit. They were both nervous to press the issue because they didn’t want it to interfere with their new relationship.

  Mike kept working on Jackson. The two watched programs on television about hoarding, and they even came to hear me give a talk on hoarding at a home show in their town. Finally, Jackson agreed to talk to a professional cleaner. In the meantime, the two had moved into Mike’s house, and they realized that they needed to sell Jackson’s house.

  Although Jackson had agreed to make the phone call, he kept putting it off. Finally, Mike encouraged Jackson to just pick up the phone and call. He reassured Jackson that he loved him and that he would be there to support him. Getting Jackson to make that call was the breakthrough that the couple needed. Once Jackson and I talked, Mike backed off and let us plan the cleanup.

  In talking to a hoarder, it helps to focus the conversation on the clutter, not the person. Hoarders are then able to separate themselves from the mess. They can begin to think of themselves not just as a hoarder, but as a person who does (or can do) many other things as well. Most important, they can let go of the defensiveness that is preventing them from moving ahead.

  This process can take months. Mike had an advantage in that he was living with Jackson and had time to build other aspects of their relationship. They spent a lot of fun time talking, cooking, and going out—activities that had nothing to do with hoarding. An important part of hoarding recovery is forming and growing outside relationships and finding healthy substitute behavior, which is what Mike and Jackson were working on without even realizing it. Then every once in a while Mike would mention the house. And when Jackson tried to ignore it or change the subject, Mike would remind him gently that he was going to keep bringing it up until they dealt with it.

  Kathy, Roger’s sister, had quite different challenges. Of his two sisters, she had always gotten along with him best, so it was Kathy who was likely to get him to open up more in conversation.

  After their parents’ deaths, as Kathy and her sister were trying to deal with the estate, Kathy took the job of staying in touch with Roger, starting with weekly phone calls when she would always make a point to encourage Roger to take care of himself: eat well and get out of the house for some exercise or just to engage with other people at any level. She would also update him with any information she was getting on how to de-clutter and, of course, ask him when he thought he would be ready to start a cleanup.

  Kathy knew her brother well and sensed that he would be comfortable at least talking about the cleanup with her. She had good instincts on how hard to push him and what he might be open to hearing. Most important, she cared deeply about him and was committed to his well-being over the long term. That’s ideal for the contact person.

  In conversations with hoarders, it helps to focus on the potential future, talking about how the hoarder’s life might look later, or about the process of organizing and de-cluttering, which is much less threatening than using the term “hoarding.” Talking about the future, but keeping the conversations positive and not about existing hoarding behaviors, is difficult but important.

  Early-stage hoarders usually aren’t in complete denial, so introducing the topic is not as difficult. With late-stage hoarders, one has to be more careful about language. Hoarders at this point don’t trust many people, if anyone. They have been judged and rejected for hoarding more times than we can count. Their self-esteem is pretty low and they are emotionally fragile. Discussions with late-stage hoarders have to be carefully worded to be positive and supportive and avoid judgmental comments that will cause the hoarder to shut down.

  While most initial contact is made by family members, sometimes an impartial outsider can talk about the hoarding with no emotions attached to those discussions. A social worker and a cleanup expert can be the bad cops to the family’s good cops. The early involvement of a third party serves as a foil for the family members—someone for the hoarder to lash out at so the family relationships stay intact.

  ▶ When Is a Hoarder Ready?

  Mike knew that Jackson was ready to call in help because Jackson had started talking about his future and about how he wanted his life to look. He confessed to Mike that he knew he had to deal with the house at some point. The two were making plans to share their lives together, and Jackson’s house was a major obstacle.

  Jackson was living in a “perfect past,” with his Blondie memorabilia and a big collection of designer clothing. He was hanging on to a time that had made him happy, and he wasn’t ready to let that go until he saw that he could have a fulfilling life in the present.

  Hoarders are ready to tackle their issues when they start openly talking about what they miss out on in life, and what they want back. Instead of obsessing about why family members have kept them from seeing their grandchildren, for instance, they start to focus on the simple fact that they miss the grandchildren. They may admit that they want to see them, and at their own house instead of at the home of another family member. When the conversation changes from blaming others for the situation to expressing a wish for something positive, like more time with the family members, it’s safe to give a little push—encouragement that says, “I am giving you my help, love, and support. If you really want to change, then now is the time.” It can be as simple as asking, “What can we do to help you get your life back?” The hoarder has to decide what that action is.

  ▶ What Is a Hoarder’s Role?

  Candace, the former advertising executive we met in Chapter 2, was an exceptional worker who started her cleanup even before her helpers arrived. She talked with me on the phone, and because she was eager to start, we mapped out a plan before I visited the house. She had recently stopped drinking and said that she was ready to channel her energy into something positive.

  Candace had boxes and piles of paperwork—mostly bills and other mail. She was willing to start there, sorting through each pile and box one piece of paper at a time, in search of old checks, overdue bills, and other important financial documents.

  But Candace’s OCD kicked in, and she wanted to make final decisions about every single piece of paper as she went through it all. In the interest of speed, it was a lot more efficient for her to group like items together, then sort through those after the major cleanup was over. So she put all of the bills in one bin, checks in another, family photos in a third, and trash in a fourth. By the time the cleaning crew arrived, three days later, Candace had already gone through ten boxes of paperwork completely on her own. She had four fifty-gallon trash bags of old mail to shred.

  Brad and Ellen were also able to do a lot of the work on their own. I gave them a plan for staying clutter-free, which included a “ten-minute sweep” through the house every night. They focused on that and managed to get the house de-cluttered, and keep it that way.

  Many hoarders can work hard all day
long and keep working even after the cleaning crew has gone home. Others need supervision, frequent breaks, and take a more passive role in the actual cleanup process. In planning any cleanup it is very important to take into account both the hoarder’s ability and his or her willingness to help. The hoarder should have a sense of being in control as much as possible, but that is determined by what he or she is physically and mentally able to do—and how sensitive the team is to the hoarder’s needs, wants, and limitations.

  How involved can hoarders be, and more important, how involved do they want to be? Can they carry boxes and items? Or should they sit quietly and “direct” the cleanup, deciding where things should go while others do the actual moving? Does the hoarder have health issues that may cut the workday short? When does the hoarder’s day usually start—early or late? Empathetic team members will work with hoarders to build a plan that they feel good about.

  I expect the hoarders I work with to give me 100 percent effort. Their 100 percent may not produce as much output as mine, but I want to know they are giving me everything they have. Sometimes a hoarder is so physically unwell or emotionally stressed or completely passive that he or she can only sit in a chair and say yes or no—and that’s fine, as long as the hoarder is not showing signs of passive-aggression or simple resignation, which could result in some serious backsliding down the line.

  In my experience, I have often found that hoarders who are argumentative or bossy—some might called it spirited—work hard once they’ve bought into the concept. But if a hoarder is particularly stressed or anxious, the cleanup may go more slowly, and the hoarder needs to stop frequently in order to get himself under control. This kind of development requires continuing patience and support.