WAUKESHA — Bill spends much of his day seated in a reclining chair watching television or reading in his studio apartment.
He eats his meals in that chair and also sleeps in it at night. There’s a bed in the tiny apartment, but you’d never know it, because it’s buried in boxes and bags of stuff, books, magazines and videos that he has accumulated over the years.
In fact, stuff takes up so much of the space that there’s only a small path — no more than a foot wide — from the main room to the kitchen.
Another small path leads from the front door where a spot on a bench press was cleared for a visitor to sit during a recent interview.
Being a studio, it’s tiny and doesn’t have much storage space, but there is one closet with two sliding doors, barely visible since stacks of belongings cover all but the top portion of the doors. Bill, 67, (who asked that his real name not be used) estimated it’s been 10 years since he’s been able to get into that closet. He doesn’t know what he’ll find once he’s able to get into it again.
Bill, a former grinder in a marble factory who enjoyed body building, admitted he could be called a “hoarder,” and offered little explanation for why he’s in this situation other than the collecting of things “creeps up on you and the years fly right by.”
In spite of the seemingly overwhelming sight and mounds of paperwork and belongings that greet visitors to Bill’s apartment, Carla Alejo, director of in-home support services for Catholic Charities Milwaukee Office, views his situation as a success story.
She’s been working with Bill and his hoarding disorder for about three months through the Catholic Charities Hoarding Intervention and Treatment Program, and during that time has seen tremendous improvement, she said.
For example, the bathroom of Bill’s apartment is fully functional. Gone are the piles of items that filled the bathtub. Thanks to Alejo, it’s scrubbed clean and now has a new shower curtain and liner. The toilet has a new toilet seat and the only “stuff” in the bathroom is a small box of toiletries awaiting a little plastic cabinet in which to store them. He can now shower in his bathroom, rather than having to go to the nearby athletic club.
Alejo, with Bill’s help, has also made progress in the kitchen area; slowly, but surely, the piles in the main room are diminishing.
More than just the decreasing amount of objects in the apartment, however, Alejo said she’s seen a change in Bill’s attitude and approach to the situation.
• It’s estimated 12,000 to 30,000 adults in Milwaukee have hoarding behaviors.
• Compulsive hoarding and cluttering affects roughly 2 to 5 percent of adults.
• 33.8 percent of hoarders have a yearly income of less than $15,000.
• 2.3 percent of the United States population suffers from OCD. n 18-40 percent of OCD suffers display hoarding as a symptom.
• 50 percent of those suffering from hoarding disorder grew up with a hoarding family member.
• 32 percent of people with hoarding disorder are faced with imminent eviction. (Statistics taken from “Hoarding and Intervention Treatment Program,” prepared by Catholic Charities of Southeastern Wisconsin)
This is Bill’s second go-round with Catholic Charities. About three years ago, they worked with him briefly, but at that point, at his request, they stopped.
“He was not ready for a change,” explained Alejo, “but about two, three months ago, he called back and wanted to resume services and I’ve seen an extreme change in his attitude. He has a willingness to get rid of stuff and we’re able to talk through, reason why he wants to keep something.”
She added, that he’s come to the understanding that it’s more important to keep his apartment than to keep all his stuff.
According to Alejo, Bill’s landlord pushed him to get help for his hoarding problem by referring him to the Department on Aging which in turn referred him to Catholic Charities, the only nonprofit organization that provides a holistic approach, including case management and therapy to people with hoarding disorder. Additionally, Alejo is chair of the Milwaukee County Hoarding Task Force whose mission is to raise awareness of hoarding and make resources known and accessible by developing collaborative efforts of local services.
Alejo, who has worked in the home health care field for about 20 years, said she’s recognized hoarding as an issue for at least that long. She describes hoarding as “when someone has too many items in an area where you can no longer utilize the area for the purpose it was meant to be.”
Recognized in the Diagnostic and Statistical Manual of Mental Disorders as a true diagnosis, it’s an increasing problem that affects anywhere from 2 to 7 percent of a community, said Alejo. People in rural areas are even more susceptible, she said, because no one bothers them and they don’t have as many neighbors.
“At one point, one of the city inspectors told me there was at least one person suffering from hoarding disorder on every block in the city of Milwaukee,” she said, adding she knows of areas where there are more.
According to Alejo, studies have shown hoarding usually begins in a person’s 20s and 30s, but the average age for when a person begins looking for help is the 50s or 60s.
“It takes quite a few years to build up that stuff. Back when they were 30, they start to acquire and not discard, but when they’re older it’s when help is sought,” she said.
Because of the stigma associated with hoarding, Alejo noted that hoarders often suffer alone.
“A lot of families have shunned them and neighbors (have too), so they feel like they have the world on their backs,” she said, adding it’s not just that they have things to clear up, but often they face financial, health and social issues as well. “This has created such a deep hole for them.”
In Bill’s case, his bed is completely hidden under things and the weight bench is covered with belongings. Alejo said she’s been in homes where the stove is covered with things and people are unable to cook on it.
Hoarding is more than just collecting, said Alejo. It’s a mental health disorder that can happen to anyone at anytime, she said. Hoarders are often people who at one point in their lives were very successful, she said, citing professors, pharmacists, attorneys she’s met with the disorder.
“They usually acquired a good career but at some point they have this life event and things became overwhelming and they were not able to control it like they usually do. Everything starts to pile up and they don’t know how to get themselves out,” she said, adding that often hoarders suffer from OCD (obsessive compulsive disorder.)
“This can happen to anyone at anytime,” she said, noting that she’s had people tell her, ‘I could never suffer from hoarding; my house is immaculate. I clean my bathroom every day.’”
Actually, Alejo noted, “They are at higher risk for falling into this disorder than others because it becomes very frustrating when something happens and they are not able to do what they normally do.”
Oftentimes a life-changing event triggers the problem. For example, she worked with one man, a former librarian, who came home from work one day and found his wife dead of suicide.
Formerly a social person, he isolated himself in his two-bedroom apartment and enclosed himself in books. When Alejo met him, she found him with one little chair to sit on amid thousands of books. He also had another apartment and three storage units filled with books.
With her help, this “extremely intelligent, very nice man” donated many of his books and Alejo found him a senior living situation where he is independent, but social, involved in community volunteering.
“It’s a great success story, but heartbreaking because he lived like that for probably close to 20 years,” she said, noting that in the midst of all the garbage they removed from his home, they found a letter his wife had written before her suicide.
There’s a stigma associated with hoarding, said Alejo.
“People think that those with hoarding disorder are filthy, lazy and want to live like that,” she said, adding, “truthfully, I have not come across anyone who wants to live like that. They don’t know how to change or where to go for help.”
With other disorders, such as alcohol or drug abuse, Alejo noted there are outlets in the community where people can go for help. But with hoarding disorder, there’s no outlet, other than Catholic Charities.
“It’s one of those last diagnoses that people don’t want to talk about,” she said, noting that part of Catholic Charities’ long range plans include an intervention program that would include support groups for individuals and family members, therapy and case management.
Depending on funding, Alejo said she hopes this complete intervention program can be rolled out within a year.
In the meantime, Alejo and her case workers address the hoarding problem through in-home support services employing a team approach which includes a case manager, home coach and therapist that completely assess an individual’s safety, health and financial needs.
“One of the benefits of having the full program will be combination of experience and hoarding-specific knowledge of the staff along with the continuing search for education on this disorder. We will be able to identify and tend to our client needs quicker and more efficient,” said Alejo.
She’s also become a respected presenter on this issue, speaking at least monthly to organizations, health departments, agencies and groups that work with seniors. This fall, she will speak at Catholic Charities USA, hoping that other Catholic Charities across the country will follow her agency’s lead.
Alejo said she receives about five phone calls a day from hoarders themselves, family members, health departments, or aging resource centers. Catholic Charities serves more than 300 clients a year in the program, with 30 to 50 specifically involving hoarding.
Television programs such as “Hoarding: Buried Alive” on TLC have drawn attention to the hoarding problem, admitted Alejo, yet she said they often go about it the wrong way.
For example, the show will clear a person’s house out in a few days. For Catholic Charities, the process will be much slower, yet Alejo and other case workers make sure the client is involved in the disposal of their belongings.
“We don’t move at a fast pace; we go at their pace,” she said. “Hoarding is so overwhelming that we try to make the introduction of our services not overwhelming. Number one is building a relationship and trust, and if we don’t, there’s no way we will get in the door. We make sure they help make the decisions.”