The Hoarding Disorder Resource and Training Group

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.”