After our mother died, the very first of many vendors we called to deal with her hoarded house was an exterminator. When the young man in orange coveralls emerged after spraying his poison, he lifted his respirator mask, wand still in hand, and said, “It looks like your mom was a really smart lady.”

Our mother was in fact “a really smart lady.” She read many books, wrote poetry, patronized the arts, led human and civil rights initiatives, and saved beautiful beaches and wetlands in Northern Minnesota from obliteration. And she was a woman who hoarded – just exactly as it’s been shown on reality TV. In spite of this, in spite of the garbage and the flies and everything else the young man in orange must have seen that day inside our mother’s house, he summoned the most unexpected and lasting words of consolation.

Our mother had politely been called a “collector,” an “eccentric,” a “free thinker.” It was not until the end of her life in 2010 that anyone used the word “hoarding” to describe her behavior. And so it was with a great deal of interest that I (and no doubt legions of other loved ones of people who hoard) noted that “hoarding” had graduated to a place of its own as a distinct diagnosis in the newly minted version of the American Psychiatric Association’s “Diagnostic and Statistical Manual of Mental Disorders” (the DSM-5).

It’s too soon to tell what this new designation might mean in the way of increased awareness, more accurate diagnoses, development of treatment protocols, insurance reimbursements and funding for research. But it’s not too soon for people like Janet Yeats, a family therapist and co-founder (with therapist Jennifer Sampson) of The Hoarding Project, a nonprofit based in Minnesota and Washington, to start building a wish list.

Defining hoarding

Until recently, hoarding had been classified in the DSM-IV as a subset of obsessive-compulsive personality disorder. As a result, many people associated hoarding with OCD itself, perpetuating confusion and misunderstanding about the nature of the disorder. Although some people with hoarding disorder also have an OCD-related diagnosis, most do not, and the two are not the same.

The APA explains: “Using DSM-IV, individuals with pathological hoarding behaviors could receive a diagnosis of obsessive-compulsive disorder, obsessive-compulsive personality disorder, anxiety disorder not otherwise specified or no diagnosis at all, since many severe cases of hoarding are not accompanied by obsessive or compulsive behavior.” A more accurate diagnosis, the association hopes, will lead to more effective treatment.

As currently defined by the APA and others in the field, the characteristics, symptoms and harmful effects of hoarding disorder include:

• Persistent difficulty discarding or parting with possessions, regardless of their actual value.
• Inability to use rooms in the house for the purpose for which they were intended: kitchens, bathrooms, workspaces and sitting areas, for example.
• Distress or impairment in family and social relationships.
• Inability to maintain a safe environment for oneself or others (fall or fire hazards or other public safety issues).

Many assume that hoarding is a consequence of the modern material age, unique to consumer cultures, or the result of extreme deprivation from events such as the Great Depression. But it has been with us for a long time in some form or another, authors Gail Steketee and Randy Frost write in their 2011 book, “Stuff: Compulsive Hoarding and the Meaning of Things.” Dante’s fourth circle of hell is reserved for hoarders, they point out. And Dickens, Balzac, Conan Doyle and Gogol all created characters who were hoarders. “Garbage houses” (gomi yashiki) have been identified in Japan, Australia, Russia and Canada.

It’s estimated that 2-5 percent of Americans (6 million to 15 million people) are hoarders.

“That’s just the tip of the iceberg,” says Yeats, who argues that a real calculation of the size of the problem would include every single family member and every neighbor of a person who hoards.

Developing compassion

Steketee and Frost and others in the field, including Yeats, have by my lights done a great service in conveying compassion and understanding for people who hoard. (This will be hard, I know, for some fractured family members to swallow.)

They have observed, for example, that some people who hoard have unusually detailing, intelligent minds, and have a heightened appreciation for the beauty and importance of everything from an empty soup can to the bright colors and tight weave of a Hudson Bay blanket. Yeats said she is constantly surprised by the number of her clients who are gifted artists – quilters and painters who no longer have the space in which to express themselves. Some people who hoard worry about wasting, and can’t bear to casually toss out a frayed sweater, a broken appliance, an empty fast-food container. And some view objects not merely as keepsakes or mementoes but as gateways to significant emotional experiences.

“Objects in a hoard may appear to be without value to an observer, but someone with a hoarding problem would hardly describe them as worthless,” Steketee and Frost point out.

Hence the folly and futility of storming the barricades with a biohazard team to force a cleanout. The strategy is traumatizing, and the rebound effect is ferocious: Houses that took 10 years to hoard can be re-hoarded in less than a year. Other common mistakes include touching or discarding things without permission, issuing ultimatums, and registering disgust or dismay verbally or with body language. If you don’t have the involvement and consent of the person who hoards, the consequence, Yeats says, is almost always a break in the relationship.

A holistic approach

Yeats said her work very often begins with identifying and managing unresolved grief and trauma – “which is true for the great majority of our clients.” Someone has died, there has been a divorce, or the person who hoards has been abandoned in some significant way. The stuff, which isn’t going anywhere, becomes a protective barrier.

Individual therapy approaches can include grief work, cognitive behavioral therapy, or dialectical behavior therapy. But the hoarding behaviors are not likely to change, Yeats says, unless a collaborative approach is deployed, one that involves organizational experts, and the involvement of the greater community of housing inspectors, fire marshals, and environmental and public safety officials.

Most important, the recovery process must include family members, who too often get left out of the picture. It’s not unusual for Yeats to hear from family members that they haven’t been inside their loved one’s house for 8, 15, 20 years, or spoken to the person in many years.

“The system of the family needs to be helped, not just this person,” said Yeats. She said she almost always advises her clients to “take the path of relationship” rather than force an intervention (unless the situation poses fire and safety hazards). If you can’t go inside mom’s house anymore, then find a way for mom to come out, she says.

Yeats said she also hopes that the designation of hoarding as a separate diagnosis will lead to further advances in neuroscience, showing more clearly what is happening in the brain when someone hoards or attempts to discard an item. Also on her wish list is a greater understanding of the size of the problem and the impact on communities.

“We need to know more about what a hoarded home costs the community – not just in money but in other resources and time. We need to know more about what it costs just in terms of being able to have community. Can the neighbors connect anymore if there’s a home that’s hoarded? Or do they only connect about their anger and frustration against this person?

“We need to think about our world as a community, about the smaller worlds that we’re all living in, and the moral mandate to take care of each other – and hopefully of a way of life that we would want to have of taking care of each other.”

Under the hoard

As we look back on the seeming intractable nature of our mother’s hoarding disorder, the pain it caused our family, and our useless efforts to do something about it, we realize now of course that we might have done a few things differently. My sister and I might have skipped the uninvited visit, for example, that we made to (diplomatically) address the conditions in mother’s house. She was not happy about our dropping in unannounced, and she died months later without another word to us. We have to live with that. But we also live with knowing that underneath the hoarding, as awful as it was, was a beautiful mind. Here is one of mother’s many poems we unburied:

SUBVERNAL

Without the usual warnings, Winter.
All the ground froze overnight. 
The kill came early, from Ontario.
I still had leaves to mulch and grass to mow.
I still had thirteen shrubs to plant around the yard.
The stakes were in the ground.
The pots were waiting, under leaves raked in a mound.
It was too late.
The roots were all icebound.
Too late to spoon in any nourishment,
Or give a last good soaking drink.
The broken tap had dripped a skating rink.
I took the pots downstairs
And put them by the basement sink.

The Holidays and children came and went.
I vacuumed. I threw out the Christmas tree.
I faced another winter wearily
In self-impeding doubt about Man’s Destiny.
But even in the depths of dark lament,
Another load of laundry must come clean.
By evening windowlight a washerload was seen
To have a curious tinge of incandescent green.
And by the morning, all of my basement,
All walls and ceiling, water in the tub,
Reflected emerald sheen.
On every potted shrub, a new green leaf had burst
From darkened branch and withered nub,
The January sun on snow had sent a message
Down through window glass
To sleeping plants not under frozen grass,
That Winter into early Spring can also pass.