Unearthing Hope and Help for People with Hoarding Disorder
When Bec Belofsky married Lee Shuer, she had no idea he had hoarding disorder.
When they met, he was living in an apartment with roommates, and she didn’t know most of the items in it, which included a ‘museum room’ filled with a seemingly endless number of things, belonged to him.
But within a short period of time, every surface in the married couple’s apartment was covered. In fact, although they could barely get through the apartment — and she had bruises from bumping into things — he continued to bring home ‘treasures’ on a daily basis. “I had a feeling of dread every time I heard the sound of his key in the lock,” she recalled.
Shuer told BusinessWest he also had a storage unit that was full and a collectibles booth in South Deerfield, but never sold much. “I couldn’t let go of anything, so I had everything priced for more than it was worth,” he said.
Anyone has who watched TV shows depicting people who hoard might think there was little hope for Shuer or the marriage, but today much of the couple’s Easthampton home is immaculate, he has been in recovery for 11 years, and they have made it their mission to help other people with what they refer to as “excessive finding and keeping,” because the word ‘hoarder’ leads to feelings of shame and guilt.
They have appeared on many national and international TV and radio shows, including CBS Sunday Morning and Voice of America, and travel the world educating therapists, government officials, relatives of people who hoard, as well as hoarders themselves about what it takes to successfully overcome the disorder.
They want the public to know that television shows that portray interventions with people who hoard are extreme and not representative of the majority of people with the problem. In addition, tactics that include forcing the person to make quick decisions about untold numbers of items, accompanied by threats from family members, can be devastating and lead to a return of the behavior after their space is free of clutter.
“There are kinder, gentler, more effective approaches to the problem,” Shuer said. “Telling someone to stop collecting things is like putting a warning on cigarettes. You have to have the motivation to stop, but once it becomes internalized, people find the strength of purpose they need.”
He has worked with individuals, groups, and institutions ranging from Stanford University and Smith College to the Institute for Challenging Disorganization through the couple’s business, Mutual Support Consulting, and has created a program called WRAP for Reducing Clutter, which is a wellness and recovery plan.
Shuer also works with researcher Randy Frost, who co-authored the book Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding, to create The Facilitator’s Manual for the Buried in Treasures Workshop, as well as another workbook designed to help people with the problem.
Frost says the reason it is so difficult for people with hoarding disorder to relinquish possessions is that everything they save has real significance to them. In some cases, such as a journalist who collects newspapers, the collection is a concrete embodiment of their professional identification.
“So getting rid of them makes the person feel as if they are losing that piece of themselves,” said Frost, professor of Psychology at Smith College. “We don’t really know what the underlying cause is, although it is clearly an attachment issue, and there is some indication it is related to early life experiences.”
Jane Laskey, a psychotherapist from Holyoke Medical Center’s Behavioral Health Outpatient Center, has had clients with hoarding disorder, and each one of their situations has been unique. “In many cases, hoarding is a symptom; it’s something people do to protect themselves from feelings that are very scary or painful, including sadness, anger, or hopelessness that often originated in childhood,” she explained.
For this issue’s focus on health, BusinessWest explores the type of thinking connected with hoarding and offers advice from these experts to help people with an overabundance of possessions regain control of their lives.
Shuer’s love for tangible items began when he was about 4 years old and began asking neighbors if they had anything old they didn’t need. His parents allowed him to keep many of the things he was given, including old tools he really liked.
“I was socially awkward as I was growing up, and these things gave me comfort and something to talk about with other people,” he said, adding that, although he had a wonderful family, he often felt lonely because he was a social outcast at school. “I was looking for myself in the stuff I collected.”
For example, he’d always wanted to learn to play a musical instrument, and by the time he was married, he had collected far too many of them.
Today, Shuer tells people who hoard that “letting go doesn’t mean giving up a dream. You can come back to it, but you need to keep your eyes on the real prize.”
His own recovery began 11 years ago when Belofsky-Shuer heard of a study on hoarding that was being conducted by Dr. David Tolin, co-author of Buried in Treasures.
“We have developed treatments for the disorder that work fairly well, but they don’t work for everyone,” Frost said, noting that research continues to help people with hoarding disorder.
At the time, Shuer was working as a mental-health counselor for ServiceNet in Northampton and had served on the Western Mass. Hoarding Task Force for about a year. No one at work knew he had the problem, but in time he admitted to it publicly.
“I had to help others overcome the stigma,” he said, adding that he also received a grant to lead a peer-support group based on Frost’s book. After using principles outlined in the tome himself, Shuer began leading the group and meeting with Frost weekly, and they developed the facilitator guide to help others.
“By that time, I had learned enough to help myself and share what works,” he said. “What takes place in the Buried in Treasures groups is not therapy; it’s an action-oriented plan that helps people take concrete steps to alleviate clutter.”
Still, his wife struggled for years with her own issues caused by his problem. Although Belofsky Shuer has a degree in psychology from Smith and had some academic knowledge gleaned from one of Frost’s classes, she felt isolated and alone.
“The stuff Lee collected was so important to him that it put a real strain on our marriage,” she said. “I felt helpless in our home and insignificant; the things that made up my identity were buried under all of his things.”
She added that most people don’t know there is help available that works. “Research only began in the ’90s, and TV shows that show forced cleanouts don’t work. But finding the motivation to change and learning why people become so attached to things and challenging their beliefs can make a real difference.”
However, the couple stressed that it’s not an all-or-nothing proposition; getting support from others online, through counseling, or in a support group with peers, which offers the best chance at success, can slowly lead to change.
Shuer said the disorder reflects an abnormal attachment to items that can stem from positive qualities that spiral out of control. For example, a person may feel they are archiving family treasures, don’t want to get rid of printed information they believe may prove valuable in the future, or be overly concerned about recycling things in a proper manner.
“There are emotional and cognitive aspects to decision making when it comes to letting go of things,” Belofsky Shuer explained, adding that the workbook outlines steps for decision making and is available free through their website, www.mutual-support.com.
“We encourage people to start small and focus on clearing one square foot at a time,” Shuer said.
Anyone whose problem hasn’t reached an extreme level can also begin by focusing on sorting through one type of item at a time: they could gather all the books in their home, put them in one place, then begin going through them.
“They need to remember they can get many of them at the library if they want to read them again,” Shuer told BusinessWest.
It’s critically important, Belofsky Shuer added, for family members to take care of themselves during the process. “I completely lost my identity and had a lot of anger and resentment when our home was filled with his possessions,” she said, noting that counseling allowed her to be supportive and restored her sense of self while her husband slowly worked toward their shared goals.
Course of Treatment
Studies have shown that people who hoard have suffered more trauma than the normal population, but only half have undergone a very difficult trauma.
“Trauma is not the underlying issue, but there is a lot of co-morbidity, and the biggest one is depression. More than half of hoarders suffer from it,” Frost said. “It isn’t clear that depression causes the problem, but it can make it worse.”
Laskey added that accumulating things can give people a feeling of control or enhanced self-esteem. She treated one woman with a very poor self-image that stemmed from her childhood who kept buying new clothing, even though she had never worn most of what she already owned.
“Buying gave her hope and a momentary feeling that included excitement and anticipation,” Laskey said, adding that the woman envisioned feeling attractive and confident wearing the new clothing, and lacked the confidence to think of other behaviors that could improve her self-esteem.
She suggests using stalling techniques before bringing anything new home, which can be something as simple as taking a walk.
“The problem is that the brain gets stuck like a record in a groove, and the need to have something becomes an automatic way of thinking,” Laskey said, explaining that, in some cases, the person can learn to be an “impartial spectator” by detaching from their feelings and trying to judge an item the way a friend might view it.
Indeed, asking a close friend for support can be beneficial, but it’s critical for that person to respect boundaries.
“If the person with the problem says they only want to spend 10 minutes going through things, don’t push them to do another five minutes,” Laskey said. “Let them set the ground rules and praise any progress they make. Hoarding is like an addiction which becomes a habit, and habits are really hard to break.”
Frost says three elements are critical to attaining lasting success. The first is controlling acquisition, and addressing the reasons why the person feels compelled to collect things.
“People see something they want, seek things out at yard sales, or find something while they are driving on trash day. Acquiring it is an impulsive behavior. When they find something they like, they get a high that is almost like an addiction; many people have told us it gives them joy in life when they find a new object to bring home,” he explained. “Their attention becomes so narrowly focused that they don’t think about whether they have the money to buy it, room to keep it in, or whether they already have a dozen of the same items at home.”
Treatment involves bringing conscious control into the decision-making process, but won’t work unless something else is substituted that gives the person an equal sense of pleasure.
Frost’s book Buried in Treasures contains a tear-out page with questions people can ask themselves to help them decide whether they should acquire a new item, and includes room for questions appropriate for individual situations that can be generated during therapy sessions or with a peer-support group.
The second key element in successful treatment is treating the overpowering urge and belief the person has that they must have something they see and desire.
“The urge is overpowering, but they have to learn to tolerate it, which is done by creating a hierarchy of situations in which they practice walking away from an item without buying it,” Frost said.
After acquisition and impulsive behavior are under control, the person then needs to pare down their existing trove of belongings.
“We work on changing the nature of the person’s attachments to things so it’s easier to get rid of them,” Frost noted, explaining that people often fear they will become depressed and unable to stop thinking about an item they get rid of, will never be able to find the same type of thing again, will lose an important connection to someone in their life, or will be responsible for harm coming to the object.
“So, we turn them into scientists whose goal is to discover whether their beliefs are true,” Frost said, noting that some clients get rid of one item, then keep track of what their life is like afterward.
“Some feel they will be anxious forever and won’t be able to stand it,” he told BusinessWest, explaining that putting long-held beliefs to the test is difficult for anyone to do.
Shuer said it was an epiphany to realize he could get rid of something and not miss it. “I thought, ‘If I can let go of one thing, maybe I can let go of others.’ The idea brought me a sense of joy and relief that I thought I could only get from acquiring things,” he said, cautioning that, when people begin weeding through their belongings, they should start with items that don’t have strong emotional meaning.
The third key element in successful treatment is learning organizational skills. People who hoard are taught how to create filing systems as well as ways to organize items that are important, as many lack knowledge in this area.
Today, whenever Shuer is tempted to bring home anything new, he asks himself whether he has a place for it, whether he can afford it, and what his wife will think.
“These questions are reality checks that have become automatic for me. I am less impulsive and have moved towards a long-term vision for acquiring things that fits in with my physical space,” he said.
His success has resulted in a new life mission and a better marriage.
“We are happy now,” Shuer said. “When you are living with too much stuff, you can never relax; you feel you should always be working to reduce it. But now that we are liberated from clutter mentally and physically, we have the time and freedom to have fun and help others.”
Indeed, the hope of finding peace of mind, improving relationships, and having time to enjoy life are real treasures that can motivate ‘finders and keepers’ to seek — and work toward — lasting change.