Hoarding Disorder: Before and After

For Lee Shuer, his object collecting turned into a decade of treating a hoarding disorder. Learn how he overcame hoarding disorder.

A house’s appearance can be deceiving. From the outside, a house may appear to be well-maintained, but on the inside it could be stacked from floor to ceiling with clutter. Much like their home, someone with a hoarding disorder may appear healthy on the outside, but because hoarding is categorized as a mental health disorder, it’s difficult to diagnosis unless the person is evaluated by a mental health professional.

A hoarding disorder is a condition in which people have a difficult time getting rid of possessions, even when these objects have little-to-no value. There are different levels of hoarding depending on the severity of the disorder. Extreme levels of hoarding result from the gathering of so many items that it is difficult to move around and properly function in a living space.

For most people, hoarding begins as collecting. One such scenario involves for Lee Shuer, who spoke to Everyday Health in 2014 about his hoarding. “It started with vintage video games, artwork, musical instruments and things that I thought my roommate’s friends might be into when they came over,” Shuer said. The collecting continued until he obtained so many possessions that he avoided inviting friends over and his roommates threatened to throw his things out when he wasn’t home. Shuer’s hoarding before and after story spans a decade.

Onset of Hoarding Disorder

People who have never experienced any hoarding symptoms may wonder, “How does hoarding start?” According to the Mayo Clinic, the onset of hoarding disorder usually occurs between the ages of 11 and 15. Financial dependency usually hinders younger people from reaching a serious level of hoarding. For Shuer, hoarding behavior began in his childhood but was limited until he was living on his own and making his own money.

Hoarding vs. collecting becomes more defined as someone with a hoarding disorder ages. The disorder reaches more serious levels in older adults. Extreme levels of hoarding can be dangerous for older adults because of the harmful effects on their health (i.e., high stacks of objects that could potentially fall on them or unwanted vermin attracted to trash and rotting food) and the possibility of death.

Levels of Hoarding

The National Study Group on Compulsive Disorganization created a clutter hoarding scale. This scale has five levels of hoarding:

Level one:

• Non-excessive clutter
• Doorways and stairways are accessible
• No odors
• House is described as safe and clean

Level two:

• Two or more rooms in the home contain clutter
• A light odor is present
• Trash cans are overflowing
• Kitchens and bathrooms have light mildew
• A doorway or window is blocked by clutter
• Some pet dander or pet waste is present
• Limited housekeeping

Level three:

• A bedroom or bathroom is unusable due to clutter
• Excessive amounts of dust
• Heavily dirty kitchen and food prep areas
• Strong odors are present
• Excessive number of pets
• Clutter overflows to the outside of the home

Level four:

• Sewage backup
• Hazardous electrical wiring
• Flea and bug infestations
• Damage from pets

Level five:

• Infestation of rodents and vermin
• Vital living areas, like bathroom and kitchen, are unusable due to clutter
• Human and pet waste
• Disconnected utilities

Consequences of Hoarding

Living with an untreated hoarding disorder can have several consequences, including increased family conflict and risking the health and safety of the household. When someone with a hoarding disorder lives with other people the hoarding can lead to conflict. There are several hoarding-related scenarios in which a conflict can arise:

• An unusable shared living space due to clutter
• Financial strains because of excessive shopping or the need to purchase storage facilities for clutter
• Claiming a shared area to continue the gathering of hoarded objects
• A family member attempting to clean or organize the home

Adults and young children may have strained relationships with parents who have hoarding disorder. Social services can take children away if hoarding reaches an unsanitary or unsafe level. Adult children (18-years old and older) of hoarders may adopt a caregiver role and feel that they are the ones who need to take care of their parent.

Spouses of people with hoarding disorders may tolerate the disorder for years before deciding that they can no longer tolerate the clutter. For Shuer, his wife wasn’t accepting of his hoarding. When Shuer married his wife, Becca, the couple moved in together. “She didn’t realize that all that stuff was mine,” Shuer said. After just one year of marriage, Becca said she couldn’t tolerate the clutter for much longer. “ I was not happy,” Becca said. “I felt very small in our life. The fact that I had to climb over things made me feel powerless.”

Instead of threatening him with ultimatums, Becca told Shuer that their current lifestyle would have to change. “She explained that her identity was being lost in the shuffle, that there was no place left in the home for her,” Shuer said. “I had never had anything in my life that I cared about as much as her. I accepted help.”

Hoarding Clean Up Process

Depending on the level of someone’s hoarding disorder, cleaning up their home can be challenging, time-consuming and dangerous. There is typically more to the hoarding clean up process than regular organizing and cleaning. It’s a good idea to use gloves and face masks as a precaution when participating in a hoarding clean up because you could be exposed to staph infections, E. coli, Histoplasmosis and Hantavirus from animal droppings. If hoarding reaches an extreme level, sometimes a professional clean-up crew is necessary.

Another part of the clean-up process is to divide the clutter into three categories: items to keep, items to donate and items to throw away. Trash and waste should be thrown away as well as items that are broken or have not been used in a year or more. It’s also important to remember that this isn’t going to be easy for the person with a hoarding disorder. Hoarding is a mental health disorder so while you should remain focused on throwing things away, you also need to remain sensitive to someone’s illness. Mental health professionals don’t recommend forcing a hoarder to throw items away because it can lead to social withdrawal and severe emotional trauma.

Hoarding Treatment and Recovery

Becca Shuer helped her husband recognize that his hoarding was severe, but not everyone with a hoarding disorder views their hoarding as a problem. For that reason, it can be difficult to initiate hoarding treatment. Hoarding disorder treatment is intended to address the thoughts and behaviors included with hoarding. Treatment typically involves therapy and medications to reduce symptoms of co-occurring disorders.

Shuer participated in a clinical study that tracked the emotional responses of people with hoarding disorders when it came time to get rid of possessions. The first item he got rid of was a shirt from his first electric violin concert, “I was encouraged to challenge my belief that letting things go would be the end of the world,” he said. The study required him to track how he felt after getting rid of his possession and after initially feeling truly miserable, he realized that he could still remember the concert quite well and he didn’t need the shirt to do so.

Aftercare Services

Similar to someone with a substance use disorder, people with hoarding disorders should remain in therapy after treatment or develop an aftercare plan. Someone may have to continue taking medications to manage the symptoms of co-occurring disorders. It’s important to remember what was learned in treatment and use those coping mechanisms to manage a hoarding disorder.

Shuer created a goal for himself to get rid of one object a day to reduce the clutter in his home and he set boundaries and restrictions on his shopping habits. He avoided sales at retail stores and asked himself, “What would Becca say?” and, “Do I need it?” if he considered buying something. Using strategies like these can help someone with a hoarding disorder remain in recovery.

Outlook for Hoarding Disorder

After receiving a hoarding prognosis, someone may feel defeated, but with treatment it’s possible to return to a productive life. By 2014, after almost a decade of going through treatment, Shuer said that his wife has told him she enjoyed being in their house, “We’re very happy,” she said. “We’ve had some lovely times.”

As with most mental health disorders, hoarding disorder is a lifelong condition. However, the hoarding outlook doesn’t have to be daunting. With treatment and the incorporation of coping mechanisms, someone with hoarding disorder can remain in recovery and feel comfortable in their home.

By – Jennifer Kopf

Jennifer Kopf is a Florida-based writer who likes to balance creative writing with helpful and informative pieces. Her passion for helping people has translated into writing about the importance of treatment for substance use and mental health disorders. Read more

Editor – Thomas Christiansen

With over a decade of content experience, Tom produces and edits research articles, news and blog posts produced for Advanced Recovery Systems. Read more