The Hoarding Disorder Resource and Training Group

Easing the emotional, psychological, social,
financial, and legal effects of Hoarding Disorder.

HDI In The News / April 2013

USA TODAY highlights The Hoarding Disorder Institute

April 8, 2013

Lorraine Ash, USA TODAY

When Hurricane Sandy dumped its fury on New Jersey last October, it also exposed a problem many say has been growing here for years: hoarding.

"Usually hoarders won't allow people in their houses," said David Haggerty, director of senior services for Family Service of Morris County, a Morristown-based human services non-profit.

"But after the storm hit, many had no choice but to allow professionals like fire and emergency workers access," he added. "So a lot of cases of hoarding came out of the woodwork."

Storm remediation is at a standstill in homes of hoarders, experts say, because, hurricane or no hurricane, hoarders still don't want to clean up their hoards.

Two Family Service intensive senior support care managers, Susan Donald and Laura Wrublevski, explained the stalemate: the Federal Emergency Management Agency (FEMA) is asking hoarders to clean out their stuff so it can bring in people to remediate mold and other flood-related conditions.

"At the same time," Wrublevski said, "there isn't support to help hoarders sit, sort and pare down their hoards."

"That's the problem right now," Donald explained. "FEMA, or other groups willing to help people affected by Sandy, have a role to play. Their role is not to clean up a home that has been collecting for 30 or 40 years. Their role is to take care of the damage as a result of Sandy."

In Morris County, Family Service has taken the lead on identifying hoarding because it has extensive case management programs that connect with people in the community, Haggerty said. It also offers trainings in how to handle hoarding for community professionals.

"Hoarding is a trend of epidemic proportions, and everyone wants information on how to make it better," Donald said.

But not every region in the state can say the same.

Enter The Hoarding Disorder Institute, a private company serving all of New Jersey that opens this week. Its founder is Marcie Cooper of Fair Lawn, a social worker, educator, and geriatric care manager already known for leading training sessions on hoarding to those who encounter it in a professional capacity.

Her institute also will offer myriad services, including public education forums, resource directories of trained professionals, workshops for the loved ones of hoarders, and relocation and respite placement for hoarders.

The services could fill in the needed gaps, according to Steven Horvath, assistant administrator of the Monmouth County Mental Health Board.

"The idea of a hoarding disorder institute is exciting to me because we really don't have resources for hoarding," Horvath said. "It's very difficult to match an individual with resources they can afford and that will meet their needs."

In the meantime, Dave Adams, owner of At Your Disposal, a Shrewsbury, N.J.-based hauling company, is quietly working with a few shore families of hoarders to help clean them out. Adams has helped with cleanouts on TLC's "Hoarding: Buried Alive," one of three popular cable shows on the topic.

"Still, most hoarders aren't calling for Dumpsters, even after the storm," Adams said. "They're still holding on to their stuff. If some of the stuff we see -- the feces and the garbage -- doesn't bother them, saltwater wouldn't, either."

Elizabeth Nelson, spokeswoman for ChildrenofHoarders.com, a 2,800-member online support group, said the disorder doesn't slow down or stop due to a disaster.

"Sometimes we imagine it all going up in smoke, metaphorically, because of a flood or fire," she said, "but a hoarder keeps water- or smoke-damaged belongings."

Sometimes the hoarding is even more deeply hidden. Haggerty recalls arriving at a four-acre estate to help a homeowner after Sandy. The opulence of the home did not surprise him, he said, because hoarding crosses all economic, educational, cultural, and age demographics.

When no one answered the doorbell at the estate, Haggerty's co-worker looked in the windows. All the rooms were empty.

Later the two discovered the woman only hoarded in interior rooms.

"She knew that people could look in her windows so she only hoarded where it couldn't be seen," Haggerty said. "That speaks to the complete secretive nature of the problem. This is a hidden epidemic."

According to the International OCD Foundation, recent studies indicate as many as one in 20 people have significant hoarding problems.

In addition to hoarding being more prevalent in densely populated areas where people live in smaller dwellings such as townhouses and apartment buildings, there are other reasons hoarding has become such a hot topic.

First, hoarding will become its own psychiatric diagnosis in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, known as DSM-5, to be released in May. The American Psychiatric Association, which produces the DSM, hopes the unique diagnosis will help more cases come to light and stimulate research into specific treatments.

Second, hoarding is mostly encountered by social service agencies among seniors, Cooper said, because it takes decades for the psychiatric condition to become so severe that it comes to the attention of the community.

Indeed the famous Collyer Brothers, whose dead bodies in 1947 were extracted from tons of debris in their three-story Harlem brownstone, had been developing their hoard for 30 years before they died in it.

Today there are 79 million baby boomers in the nation. The more they age, Cooper said, the more time they have to accumulate items and potentially become hoarders. Sometimes the death of a non-hoarding spouse can activate hoarding tendencies in the surviving spouse, either as a psychological response to the loss or simply because there is nothing to stop a hoard from being created and grown.

"It moves from normal collecting to clutter to pathological acquiring, which is the psychiatric disorder," Cooper said.

According to Randy Frost, a research pioneer in hoarding and co-author of "Stuff: Compulsive Hoarding and the Meaning of Things" (Mariner Books, $14.95), hoarding dates to at least the fourteenth century but has never been so visible as it is today in westernized societies.

Frost noted that there are now 2 billion square feet of space in storage facilities, which were almost nonexistent 40 years ago, and that the average house size has increased by 60 percent since 1970.

"Perhaps the abundance of inexpensive and easily accessible objects makes it the disorder of the decade," he writes.

Source: http://www.usatoday.com/story/news/nation/2013/04/08/superstorm-sandy-exposed-hoarding/2063679/

Hoarders take toll on families

April 8, 2013

Source: Daily Record
By: Lorraine Ash @LorraineVAsh

The hoarding life can continue, uninterrupted, for decades.

Help often only comes after an emergency or when a slow debilitating course of self-neglect reaches a crisis stage.

It was the slow route that finally brought relief for the parents of Erin Marucci of Old Bridge.

“Back in January of last year my cousin passed away suddenly,” said Marucci, a 40-year-old mother. “My sister-in-law and I went to pick up my parents and take them to the memorial service.”

But her 78-year-old father, weakened by lack of nutrition and light and close to death, could barely walk. Marucci said her mother’s lifetime hoarding eventually had forced the couple to live in their basement. The self-neglect was so pronounced, she said, that her uncle threatened to pick up her father and physically take him to a doctor.

When police first removed her mother from her home, her Vitamin D count was eight due to lack of sunlight and proper diet, Marucci recalled. The normal range is between 30 and 74 nanograms per milliter.

It was a move that both Marucci’s parents had long vehemently resisted and the only thing that ultimately lifted them out of the misery of the hoard.

But the long and exhausting journey is still not over for either Marucci or her brother. Not in the least.

The emotional and financial toll that hoarding takes is large and ongoing and affects people well beyond the hoarder. A hoarder’s sphere of influence extends to loved ones who deal with the fallout of a condition they can’t control and helping professionals whose presence is at first unwelcome.

Marucci said it has fallen to her brother to take care of both his parents’ affairs. For his father, he has power of attorney and, for his mother, who has issues beyond hoarding, he is legal guardian. Additionally, both siblings bring their families to visit their parents in their respective facilities, their father in a nursing home and their mother in an assisted living facility.

Then there is the hoard itself — those mountains of junk that have so plagued and disgusted Marucci her whole life. They still exist and there’s no one to clean them up except her and her brother.

 

Dozens of people, mostly friends from church, volunteer to help out of the goodness of their hearts. Nevertheless, the siblings spend countless hours and days sifting through thousands of items and tossing unopened Christmas gifts, pictures of grandchildren, thousands of lottery tickets, clothing, empty cigarette packs, newspapers, hundreds of restaurant sugar and jelly packets, detergents, and on one day, 17,000 aluminum cans.

In the two rooms where they’ve worked, the siblings have gotten the piles down to one foot deep.

According to the AARP Public Policy Institute, self-neglect is present in 40 to 50 percent of cases reported to adult protective services.

“Most people who hoard also self-neglect,” said Marcie Cooper of Fair Lawn, a social worker, educator, geriatric care manager, and founder of the new Hoarding Disorder Institute in New Jersey. “The institute will train specialists to work with people who are hoarders and self-neglecters.”

Starting this week, the institute, which services the whole state, is offering a myriad of services from education forums for the public and training sessions for professionals to workshops for loved ones and relocation and respite programs for hoarders.

A common medical emergency among hoarders, according to Cooper, is an injury incurred when pathways through trash cave in or slide. After a fall, a hoarder may be brought to a hospital and then a rehabilitation center before being sent home with a referral to a visiting nurse.

Those nurses may be the first people to set foot in a hoarder’s home for decades, Cooper said. They become the first to see the situation is not livable.

“A whole gamut of professions is affected,” said Marcie Cooper.

They also include health inspectors, home health aides, adult protective services workers, professional organizers, specialized cleanout services and more.

The average professional hoarding cleanout job alone goes for $9,000 to $12,000 and many are in the $50,000 to $60,000 range, according to Josh Rafter, co-owner of Address Our Mess, a division of SI Restoration opened a year ago to meet increasing demands for hoarding cleanouts in particular. In the past year Address Our Mess, which uses unmarked trucks, clear trash bags (to promote transparency), and provides an on-site case manager to work with the hoarder, has done about 40 cleanouts in New Jersey.

All professionals involved with helping hoarders follow the law of the state in which they work. The New Jersey Adult Protective Services Act calls for intervention only in cases, such as that of Marucci’s mother, in which an adult lacks capacity to act on their own behalf.

In the Garden State, Adult Protective Services investigates abuse, neglect, and exploitation of vulnerable adults, defined as people 18 and over who are the subjects of abuse, neglect, or exploitation. Such people also must live in a community setting, as opposed to an institution, and lack capacity to act on their own behalf.

In other words, if a New Jersey resident with the capacity to make his or her own decisions opts to hoard, that’s OK — as long as the hoard doesn’t create a public nuisance.

 

“New Jersey respects self-determination,” said Beth Denmead, a social case worker with Morris County Adult Protective Services. “We believe in our law. There’s not one of us who works here who doesn’t believe in self-determination.”

But sometimes, Cooper said, allowing autonomy while protecting the lives of hoarders and their neighbors presents challenges.

“It’s an ethical jumble of issues,” she said.

Harry (not his real name) lives in Sussex County and has struggled with his parents’ hoarding all his life. In one way, he said, it’s fortunate that his parents are “dry hoarders,” meaning they don’t hoard things like garbage, food, and animal feces. On the other hand, he worries about fire.

“The extra stuff is just more fuel if a fire did get started,” he said, “and the means of egress are blocked.”

His parents’ home has been cleaned out twice, and both times the work crew was met with bitterness, resentment, and anger. Now it is filled up again.

Harry belongs to Children of Hoarders, a national online support network that has helped him feel less alone. Elizabeth Nelson of Michigan, spokesperson for the group, said it’s nigh-on impossible for adult children, no matter how compelling their arguments, to get a parent who hoards to make a change.

“Secretly, family members hope that towns step in,” she said. “We can’t get Auntie Harriet to act on this problem, but she has to listen to the town. If towns are rigid and harsh with a hoarder, and create huge consequences, they have no idea what kind of private happy dance the sons and daughters and nieces and nephews might be doing.”

Madison Health Officer Lisa Gulla said many people think it’s mean of a health department to issue summonses in cases where hoarding creates a public nuisance. But, mostly, she said, the summonses are motivators, not threats.

“I prefer to utilize warning or summons notices, mainly to get the person help,” Gulla said. “They help the family members say, ‘You have a problem,’ or ‘We need to come in here and do something about it.’”

If a hoarder lacks capacity, Gulla said, a warning also gives Adult Protective Services an opportunity to get involved.

But garbage and physical spaces are only part of the hoarding story, according to Harry, who said the condition destroys families.

“Hoarders are toxic people,” Harry said. “They create diversions and turmoil to take the focus off what they’re doing. It creates very serious family problems. The diversions include saying things that are not true and then creating a fight between the family members.”

From the beginning the children of hoarders experience social isolation because none of their friends can come over to play or for sleepovers. They also learn to lie to protect the family secret. But as they get older, Harry said, they realize they’re enabling, not protecting.

What angers Harry most are people who blame the adult children for the problem and say they are neglecting their parents.

“That’s the kicker,” he said. “That’s the one that’s the worst.”

Today Marucci visits her mother and father whenever she can. The nursing home where her father lives is two counties away, on the other side of the state.

What most angers her is the time that hoarding has robbed—time she could have spent with her father, time her parents could have spent getting to know their grandchildren. If only Marucci could have brought them over to visit.

“I can understand it’s an illness,” Marucci said, “but the truth is I still don’t really get it. When I’m sitting there, Indian style, in a Tyvek suit wearing gloves and a mask and cleaning their house, I just don’t get it. I guess only another hoarder would understand.”

Yet even in their respective facilities, her parents continue to hoard though staffers keep the behavior in check. When Marucci goes to visit her father, who learned to hoard, he hands her a handful of straws and says, “Here, take these home with you.”

“Or he gives me little washcloths … from his food trays,” Marucci said. “After 51 years of conditioning, you can turn someone into a hoarder.”

Hoarding Hits Home

April 7, 2013

Source: Daily Record
By Lorraine Ash @LorraineVAsh

When Hurricane Sandy dumped its fury on New Jersey last October, it also exposed a problem many say has been growing here for years: hoarding.

“Usually hoarders won’t allow people in their houses,” said David Haggerty, director of senior services for Family Service of Morris County, a Morristown-based human services nonprofit.

“But after the storm hit, many had no choice but to allow professionals like fire and emergency workers access,” he added. “So a lot of cases of hoarding came out of the woodwork.”

Storm remediation is at a standstill in homes of hoarders, experts say, because, hurricane or no hurricane, hoarders still don’t want to clean up their hoards.

Two Family Service intensive senior support care managers, Susan Donald and Laura Wrublevski, explained the stalemate: the Federal Emergency Management Agency (FEMA) is asking hoarders to clean out their stuff so it can bring in people to remediate mold and other flood-related conditions.

“At the same time,” Wrublevski said, “there isn’t support to help hoarders sit, sort, and pare down their hoards.”

“That’s the problem right now,” Donald explained. “FEMA, or other groups willing to help people affected by Sandy, have a role to play. Their role is not to clean up a home that has been collecting for 30 or 40 years. Their role is to take care of the damage as a result of Sandy.”

In Morris County, Family Service has taken the lead on identifying hoarding because it has extensive case management programs that connect with people in the community, Haggerty said. It also offers trainings in how to handle hoarding for community professionals.

“Hoarding is a trend of epidemic proportions, and everyone wants information on how to make it better,” Donald said.

But not every region in the state can say the same.

Enter The Hoarding Disorder Institute, a private company serving all of New Jersey that opens this week. Its founder is Marcie Cooper of Fair Lawn, a social worker, educator, and geriatric care manager already known for leading training sessions on hoarding to those who encounter it in a professional capacity.

Her institute also will offer a myriad of services, including public education forums, resource directories of trained professionals, workshops for the loved ones of hoarders, and relocation and respite placement for hoarders.

The services could fill in the needed gaps, according to Steven Horvath, assistant administrator of the Monmouth County Mental Health Board.

“The idea of a hoarding disorder institute is exciting to me because we really don’t have resources for hoarding,” Horvath said. “It’s very difficult to match an individual with resources they can afford and that will meet their needs.”

In the meantime, Dave Adams, owner of At Your Disposal, a Shrewsbury-based hauling company, is quietly working with a few Shore families of hoarders to help clean them out. Adams has helped with cleanouts on TLC’s “Hoarding: Buried Alive,” one of three popular cable shows on the topic.

“Still, most hoarders aren’t calling for Dumpsters, even after the storm,” Adams said. “They’re still holding on to their stuff. If some of the stuff we see—the feces and the garbage—doesn’t bother them, saltwater wouldn’t, either.”

Elizabeth Nelson of Michigan, spokesperson for ChildrenofHoarders.com, a 2,800-member online support group, said the disorder doesn’t slow down or stop due to a disaster.

“Sometimes we imagine it all going up in smoke, metaphorically, because of a flood or fire,” she said, “but a hoarder keeps water- or smoke-damaged belongings.”

Even before the harshness of Sandy exposed the reality, however, informed eyes could spot the problem.

“When driving by, you’ll see there are always curtains drawn,” said Beth Denmead, a social case worker for Morris County Adult Protective Services. “The curtains are a little pushed toward the window. That lets you know it’s all up to the ceiling.”

Sometimes the hoarding is even more deeply hidden. Haggerty recalls arriving at a four-acre estate to help a homeowner after Sandy. The opulence of the home did not surprise him, he said, because hoarding crosses all economic, educational, cultural, and age demographics.

When no one answered the doorbell at the estate, Haggerty’s coworker looked in the windows. All the rooms were empty.

Later the two discovered the woman only hoarded in interior rooms.

“She knew that people could look in her windows so she only hoarded where it couldn’t be seen,” Haggerty said. “That speaks to the complete secretive nature of the problem. This is a hidden epidemic.”

According to the International OCD Foundation, recent studies indicate as many as one in 20 people have significant hoarding problems.

In New Jersey the problem isn’t more prevalent than elsewhere but is discovered in greater numbers because the state is so densely populated, according to Cooper.

“In New Jersey the instances of people with hoarding issues are more than anybody can even imagine,” Cooper said. “We live in townhouses and apartment buildings. Even our homes are close to each other so it doesn’t take a whole lot of time before a neighbor becomes aware a hoard is being amassed. In other states, when you may be acres from your neighbor, it’s not as evident.”

But there are other reasons hoarding has become such a hot topic.

First, hoarding will become its own psychiatric diagnosis in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, known as DSM-5, to be released in May. The American Psychiatric Association, which produces the DSM, hopes the unique diagnosis will help more cases come to light and stimulate research into specific treatments.

Second, hoarding is mostly encountered by social service agencies among seniors, Cooper said, because it takes decades for the psychiatric condition to become so severe that it comes to the attention of the community.

Indeed the famous Collyer Brothers, whose dead bodies in 1947 were extracted from tons of debris in their three-story Harlem brownstone, had been developing their hoard for 30 years before they died in it.

Today there are 79 million baby boomers in the nation. The more they age, Cooper said, the more time they have to accumulate items and potentially become hoarders. Sometimes the death of a non-hoarding spouse can activate hoarding tendencies in the surviving spouse, either as a psychological response to the loss or simply because there is nothing to stop a hoard from being created and grown.

“It moves from normal collecting to clutter to pathological acquiring, which is the psychiatric disorder,” Cooper said.

A case in point is Juanita (not her real name), a single 50something professional who owns her own home in New Jersey though it is so packed with items that she cannot walk in it or invite a repairman inside to fix her appliances. Not even her boyfriend has set foot in her home.

“I haven’t taken a shower in my house for 10 years,” Juanita said. “I have to plan ahead and be sure I can shower at the gym anytime I have people to meet or a wedding to attend.”

Her life, she said, is very complicated. She has sought help from an organizer who specializes in hoarding, read books, and attended decluttering group meetings, all of which have given her insight into her problem and convinced her to stop watching the Home Shopping Network.

That single move alone, she said, has stemmed the tide of items coming into her house and made a big difference.

“My childhood was typically upper middle class but there was a lot of violence and a lot of drinking,” Juanita explained. “I think I hoard things that make me happy. I’m constantly trying to create my image of a happy family life through stuff. When I was compulsively shopping, I bought things that I thought represented a normal, average, upper middle-class life.”

For instance, she owns every kitchen appliance imaginable though she never cooks and doesn’t know how to cook; seven slow cookers; three tarnished silverware sets; and “enough dishes to entertain for the next 400 years.”

According to Randy Frost, a research pioneer in hoarding and co-author of “Stuff: Compulsive Hoarding and the Meaning of Things” (Mariner Books, $14.95), hoarding dates to at least the fourteenth century but has never been so visible as it is today in westernized societies.

“Perhaps the abundance of inexpensive and easily accessible objects makes it the disorder of the decade,” he writes.

Frost noted that there are now two billion square feet of space in storage facilities, which were almost nonexistent 40 years ago, and that the average house size has increased by 60 percent since 1970.

For Juanita, home has become a kind of storage facility.

“I have some crazy idea that my things are my essence, that they are assuring me of a good life, and that, if I get rid of them, I’ll have nothing,” she said. “People think I’ve got it all together. I don’t. The New Jersey suburbs are nothing like what people think they are.”