Children who grow up in hoarded homes carry deep wounds in every area of development but are under-researched, under-supported and misunderstood. The secrecy that binds the parents, binds the children too. Survivors of these homes say literature had a major impact on their resilience and understanding as children.
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For transparency, To illustrate the impacts of the condition on children, stories of more severely hoarded homes were used for this project. While the stories of the more than 20 participants fell across the spectrum, most were on the higher end of the scale. In homes with less severe hoarding, the impacts, though serious, may be more subtle and difficult for readers unfamiliar with hoarding to understand and thus fail to conceptualize the holistic damage of the experience.
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Laurel was 60 the first time she had a birthday party. She wasn’t expecting anything unusual when she drove up to her friend Christine’s house. But out onto the porch flowed Christine’s children – boisterous, laughing and inviting. They danced about and surrounded her singing “Happy Birthday.” One of Christine’s sons grabbed Laurel’s hand and led her into the house. She was shaking so intensely that she had to hold onto a chair for support.
Inside, it was decorated for her, for her birthday.
“They all kept singing — they wouldn’t stop singing, they kept on with the “Happy Birthday,” Laurel said.
Laurel had a “total freakout” when the children cut into the cake and revealed a rainbow tie-dye effect. She said she laughed her ass off. The family had also commissioned an artist to create paintings of Laurel’s dogs in Elizabethan clothing because of her love of classic literature.
Hoarding is a disorder concerned with excessive acquisition of things or animals, lack of organization and an inability to discard items, even sometimes trash.
Laurel is the child of a parent with a hoarding disorder. Hoarding is a disorder concerned with excessive acquisition of things or animals, lack of organization and an inability to discard items, even sometimes trash. The disorder is slow to respond to treatment, if ever, and worsens with age. As the conditions worsen, secrecy and seclusion increase.
Throughout much of Laurel’s life, the word “hoarder” didn’t exist in this context. Hoarding wasn’t even added to the list of diagnosable mental disorders in the United States until 2013. Children of people who hoard are caught in a delicate crosshair not dissimilar to children of parents with drug or alcohol addictions. The parent is sick – but that sickness has immediate tangible impacts on their children. For children like Laurel, this translates to a spectrum of neglect and abuse.
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Dr. Suzanne Chabaud is one of the few people who specifically studies children of people with hoarding conditions. In a July 2020 “Practice Commentary” published with Cambridge University Press, Chabaud outlined the seriousness of the issue. She compared their struggle to the struggle of children in war zones.
She wrote that the United Nations Conventions on the Rights of the Child have recognized the importance of “relieving children who are suffering from the most abhorrent neglect, hazardous conditions, health threats, inadequate resources, victimization and abuse,” but have failed to give hoarded homes, as a children’s rights crisis, recognition.
“Among images of children in distress, we rarely see photos of them in badly hoarded homes,” Chabaud wrote. “… we do not see a teenager sleeping on a soiled mattress atop heaps of insect-infested garbage, a girl who hides clean clothes washed at grandmother’s house in plastic bags so that her clothes do not stink at school or a boy who only had cold-water showers with animal waste collecting between his toes. … We do not see children cautiously navigating tunnels of objects while walking on floors surfaced with waste from faulty plumbing, rubbish, rotting food, debris and sharp objects.”
Beyond the physical and potentially fatal hazards and fears, the emotional, social and developmental world of those children shrinks in a hoarded home.
“Fears, shame, embarrassment and parental control deprive children of socialization,” Chabaud wrote. “Some are ‘homeschooled’ because parents fear attention from authorities. Children work to maintain the family secret, fearing parental anger, rejection and blame if they violate the code of silence. They see their parents’ need to control the world of objects as a primary family focus, so these children often feel worthless, afraid and helpless.”
Children work to maintain the family secret, fearing parental anger, rejection and blame if they violate the code of silence.
Dr. Suzanne Chabaud, a psychologist who studies hoarders
Due to the reclusive, secretive and progressive nature of the illness, the opportunity for early intervention is often missed for both children and parents.
Parents who hoard may even be less likely to seek help because they have children.
“Admitting hoarding when children and objects could be forcibly removed often underlies increased hiding,” Chabaud wrote. “The more people become comfortable in their hidden world, the less they feel vulnerable and visible, and the easier it is to deny the consequences of the disorder. The children who surface into a life of their own carry residual wounds that are left unspoken.”
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Laurel has spent her life tending to and learning about those residual wounds. Her childhood deficit of basic love, protection and care made it painfully simple for her neighbor to go on to abuse her as well. In more than 20 interviews conducted for this project, Laurel was one of a handful who experienced sexual abuse as children also. Sexual abuse is not a universal experience of children who grow up in hoarded homes but the instability and neglect can contribute to the likelihood that they may become revictimized by future abusers.
According to Child Sex Abuse nonprofit Darkness to Light, child sex abusers report looking for “passive, quiet, troubled, lonely children from single parent or broken homes.”
The more people become comfortable in their hidden world, the less they feel vulnerable and visible, and the easier it is to deny the consequences of the disorder.
Dr. Suzanne Chabaud
When she was just four years old, the nextdoor-neighbor brought Laurel into his home and offered her a bath. She was shown a modicum of kindness, cleaned up, then re-dressed back into her filth-laden clothes and sent back home. Laurel loved her neighbor for that, she said. Baths and showers were among the many basic needs that she could not receive at home because the bathroom was inaccessible, hazardous and had dysfunctional plumbing. Nor did her parents care.
Shortly thereafter he began abusing her and used her to create child sexual exploitation content.
This is just one stark example of how the cycle of trauma perpetuates and ensnares children before they can even process it, let alone break or escape it. They are catapulted into life with trauma and without skills or assistance.
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For children of people who hoard, birthday parties are just one of the many normal life experiences that are snuffed out, suffocated by the hoard. Laurel couldn’t fathom that she had another birthday surprise left.
“It just — it was like mind blowing,” Laurel said. “She cut my hair.”
She said she hadn’t had her hair cut in about 25 years and her hair hung low past her waist. Children of people who hoard often struggle to gain a sense of self esteem and worth.
Christine’s mother gave her a short hairdo that sits just about her shoulders and colored it a pastel purple. Laurel loved it and today sports cotton candy pink locs with purple bangs that hang just about her eyebrows.
She couldn’t revel in the excitement for long though, she left as soon as she could.
“It was overwhelming to me — I had to actually go home – I thought ‘these kids are going to get this impression of Laurel as, … you know ‘this puddle of a woman.’”
That kind of kindness can feel obliterating to those who’ve experienced a seemingly endless stream of trauma. Unlike when Laurel received a bath from her neighbor, or when she married any of her three ex-husbands, she could assure herself that this time the love was safe.
Laurel had two failed marriages already before she moved to New Zealand with her, now, third ex-husband. For the last 15 years of their marriage, Laurel was working deeply through her trauma in therapy. Then one day, he left her suddenly and moved to Australia with another woman. He sold the house out from under her and left her flat.
Everything goes back to the hoard, Laurel said – the hoard is the most painful abuse she suffered even when compared to child sex abuse. The sex abuse was also painful and confusing — afterall, it took was a process of at least 15 years of therapeutic dedication. But the hoard was so painful that it was still unspeakable even after 15 years with a trusted therapist.
She was destitute in a foreign country when her husband left. She lived in a hut on a cow pasture, because it was all she could afford for a while. Between trauma, club-foot, various physical disabilities and Lupus, money can be hard to come by. But now, Laurel is interviewing for jobs for the first time in 20 years.
She has gained friends, a surrogate family through Christine, and thanks to New Zealand health care – her health is better than ever. Things have calmed down, she said. It took her a long time to get here though.
Her brother, however, like many children of parents who hoard, has gone on to hoard also. Generational hoarding is perhaps the most insidious impact of hoarding when early intervention is missed. One of the biggest factors in whether or not someone will hoard, according to experts like Gail Steketee, is having a first degree family member who hoards.
One of the biggest factors in whether or not someone will hoard, according to experts like Gail Steketee, is having a first degree family member who hoards.
“My brother is just going to decrepit at 65,” Laurel said. “He is letting himself go gently into that good night. He’s just going easily.”
Reading the way out
Laurel credits her resilience to her ability to synthesize her feelings and express herself through reading and writing. She filled notebooks cover to cover for decades.
The Velveteen Rabbit, the story of a stuffed rabbit who dreams that being loved will give him life, was one of her favorites. Little Laurel dreamed about the transformative power of love. She said her 60th first-birthday party felt like having a family for the first time. Her love of books persisted past childhood too. She studied literature as an adult and even did her dissertation on “madness” in literature and later became a professor.
Many children of hoarded homes say reading was a crucial part of their childhood and one of the tools that helped them survive. It also instilled in them an investigative quality that propelled them to search for answers. For this project, a survey of adult children of people who hoard was conducted through a Facebook support group – 259 out of 290 adult children of hoarders say they were avid readers while growing up in the hoard.
Many children of hoarded homes say reading was a crucial part of their childhood and one of the tools that helped them survive.
Their explanations for their love of reading encompassed a wide range. From fantastical and magical escapism, to emotional engagement, something children who grow up in hoards often lack. Some describe books as their “only friend.” Others used it as a tool to investigate or decipher how “normal people” lived. Others pored over the words of romance novels, devouring the pages trying to imagine love.
Psychologist, researcher and fiction author Keith Oatley has researched the power of reading literary works and fiction.
“We’ve actually found two main things,” Oatley said. “One of them is the more fiction you read, as compared with explanatory nonfiction, then the better becomes your empathy and understanding of other people. … It isn’t that if you happen to be empathetic, then you like to read fiction, it’s this other way round. The other thing we found is that reading certain kinds of literature can enable people to change within themselves.”
The more stories one reads, the more one is likely to understand other people. This is a lifeline to children of people who hoard who are often socially isolated by their parent’s illness. Oatley also found that reading works of art helped people with avoidant attachment process their emotions.
Alex is in his early 20s. He prepped for his interview by journaling about Roald Dahl’s children’s classic book and later film adaptation, Matilda.
The namesake character of the book and movie was also a neglected child. Like many children of people who hoard, Matilda cooks breakfast for herself, she soothes herself, she teaches herself. There are a number of heart-tugging themes in the book but among those important to neglected children are: adults can be wrong, parents can be unfit and learning is the key to freedom.
Miss Honey, the teacher who recognizes Matilda’s talent and intellect, embodies the saving grace many children of people who hoard dream of. Alex’s throat became tight as he talked about what Miss Honey meant to him.
“I wanted my Miss Honey. You know? I cried every time I watched that movie,” he said.
“There are people, …”
The lump in his throat is audible. Alex cut himself off mid-sentence and criticized himself before finishing his thought.
“So pathetic. Such a pathetic little kid,” he said, almost as if taking the position of a bully criticizing his child self.
He called himself pathetic for wanting to be seen, cared for, and appreciated as a child. Though those are basic biological needs, children of people who hoard struggle to feel they are worthy of such.
“There are people that I tried to make fill that role (of Miss Honey),” Alex said, continuing his original thought.
“I needed someone like that. I just wanted to think that people could be kind and that what my parents had to offer wasn’t all there is. I’d fantasize about finding out that I was actually gifted. I wasn’t that into Harry Potter, but I actually wrote fanfiction, … because I was just so in love with the idea of finding out ‘you are special.’”
Participants said books helped them understand social cues and body language. They mentioned that books are small and portable and don’t require the space necessary to create art or music. Reading is also a quiet activity so children stayed out of the limelight in their house’s tension.
Alex used a number of creative methods of coping without even realizing it at the time. He says books taught him how to feel, how to be a good friend and partner. He called the characters his role models. He even used fanfiction as a tool to role-play conflict resolution skills.
“I used to write out healthy arguments between characters,” he explained.
He’d create a conflict, then have the characters resolve it in a healthy way.
“It would just be a healthy conversation between characters ‘working it out’ and then it comes to a satisfying logical compromise at the end. I wrote hundreds of those. That was my way of defusing the feeling of not being listened to.”
He described himself as feeling like a pipe bomb growing up.
“I definitely lived vicariously through stories that I used to write as a tool for emotional processing because I did not have the ‘know how,’” Alex said.
Ella Enchanted is a Cinderella retelling about a girl who is spellbound into obedience. This is another book title that emerged multiple times through interviews and a google form survey administered to a Reddit support community. Children of people who hoard often have difficulty setting boundaries. Ella’s inability to say “no” resonated with many of these participants.
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Amy Napoli is an assistant professor at the University of Nebraska Lincoln and early childhood Extension Educator with Nebraska extension. She is currently engaged in research on the impacts of reading on children experiencing disaster or trauma.
The program started as a response to a string of natural disasters in the Midwest in 2019.
“Our immediate response was to see if we had a way of supporting children and giving them a way of understanding their situation and communicating about it. And not only that, but giving the adults some of that language to also communicate about it with their children, that would be a good way to kind of help them process the situation that they were in.”
The program and research is ongoing but anecdotally Napoli said child caregivers and families have told her that children are more able to have conversations about their situation.
The theory of Napoli’s research is familiar to people like Alex, Laurel and countless others who had to discover the word “hoarding” to make sense of their lives. Younger generations also had an advantage there.
Millennial and Generation Z children of people who hoard had access to the internet and hoarding had been given terminology already and thus this generation might get around to processing their trauma earlier.
Alex video chats weekly with other adults who share his experience. Some are Generation X or older.
“They all said that they were not anywhere close to where I am in terms of progress and accepting what happened to me,” Alex said. “They were shocked at how far along I was. I definitely have the internet to thank for that, that and having access to a library. After I realized that I wasn’t adopted, and I was never going to have been adopted, I started seeking out understanding.”
Every day after school Alex would go to the library, like Matilda, to avoid spending time at home.
“I spent a month straight researching everything I possibly could, about why my mom was the way she was. And I came up with hoarding,” he said.
[pullquote speaker=”Alex, son of a hoarder” photo=”” align=”left” background=”on” border=”all” shadow=”on”]I spent a month straight researching everything I possibly could, about why my mom was the way she was. And I came up with hoarding.[/pullquote]
His worldview quickly shifted.
“I started looking it up once I had all the words, … I started looking up: ‘hoarders, children of hoarders, can I be taken away from my family?’ …. And that led to kind of my teenage rebellion. I realized that so much of what my parents told me was like fear mongering. And the internet gave me access to that information.”
It wasn’t until the TV Show that Laurel had a word for hoarding.
“Until there’s language, it doesn’t exist,” she said. “And the word clutter doesn’t cut it. Packrat doesn’t cut it. The other words are insufficient. Hoarder sort of covers it.”.
Inside the family dysfunction
Alex has no memory of a clean home. He does remember the house’s transition from clutter to squalor – which occurred when he was just a toddler.
The hoard’s nucleus began with the entertainment center. At first, it was a joke shared between Alex and his father. “The Great Wall of Shit,” they called it – the language was no matter to parents of young Alex. The junk that came to overgrow their home started with newspapers, circulars and ads cluttered around the television.
“There was like a little space, a little divot where you could still see the TV but the pile would grow,” he said.
The problem grew more serious quickly.
“My dad didn’t understand the gravity of what was happening and that it was going to get worse,” Alex said. “He just continued to foster that inappropriate relationship with me where I was his best friend and we were in this together even though he had power to change it.”
This “friend” or alliance-type relationship is not uncommon in these dysfunctional households where one parent often defers to the other, also called “accommodating,” to avoid conflict. The submissive parent believes they’re keeping the other happy – they don’t realize that the looming impact.
For years Alex slept on a piece of plywood wrapped in fiberglass. “Because my mom is a moron,” he said.
That makeshift cot was jammed between his parent’s sleeping arrangements. His dad has slept on the same futon for the last 25 years. No rooms functioned as intended within the home. There was no bathroom access or privacy.
In his pre-teen to teen years he tried to bargain, argue and fight back for space with his parents. His ire was too much for his parents though and thus began years of medical abuse.
From the time he was 12 and until he was around 18 – he said he was sedated. He said his last psychiatric cocktail was 200 milligrams of Zoloft, 20 milligrams of Seroquel and two milligrams of Klonopin – daily. This combination is intense – even for grown adults. He’d also been put through multiple psychiatric holds by his parents over the years.
Klonopin is a benzodiazepine, like Xanax, and is a highly addictive class of drug that is rarely even recommended for daily adult use. It is not approved for pediatric use, and Mayo Clinic guides say youth consumption should never exceed 0.05 milligram in a day. Alex said he received four times that amount daily.
The final blowout fight that resulted in Alex’s departure left him homeless and with no way to procure his medication. He said the withdrawal process was brutal and years-long due to the way his still-developing brain had become dependent on the medication.
When he fought with his parents, they’d call the psychiatrist and his medication would be adjusted. Despite his misgivings, he never told the doctors the truth about his situation.
“My parents really impressed on me from a really young age that I had to lie about the hoard. I have a weird kinship emotionally with cult survivors, …because it is literal brainwashing. I don’t know what I thought was going to happen to me if I told the truth. But I was convinced that something horrible would happen to me if I told my doctors about the neglect that I was experiencing,” he said. “So I was diagnosed with all kinds of things, … all of which magically went away as soon as I was off the medication and away from my family. … I just have PTSD.”
My parents really impressed on me from a really young age that I had to lie about the hoard.
Alex, son of a hoarder
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The last blowout happened on the day Alex tried to move some of his possessions out. He said that he was never allowed to leave the house with anything more than the clothes on his body.
“When I went to move my stuff out, she was having a complete meltdown watching me move boxes of stuff,” he said. “She was paranoid that I had stolen stuff from her.”
He tries to keep the telling of his story light sometimes. Like many children of people who hoard – he has a quick, but dark, sense of humor.
“I was like, ‘Girl, I don’t want your garbage,’” he said.
There was only one item he was willing to risk everything for. Long before he ever imagined his escape, he carefully hid an old family photo album underneath, what was once, his bed. In that album are photos of people he has never known, his parents. They looked like the people who raised him, but like a mirage. They were ghosts from another time, place or dimension and untouchable, unreachable, through the thickened veil of mental illness.
“I tried really hard, as a psychology-informed-kid, to maintain this image of my parents before they got sick. It was my way of humanizing them, to keep myself from losing sympathy for them,” he said. “So things like family photo albums, … those are some of my greatest mementos. I could not let it go.”
His mother saw it among his possessions while he was trying to move out. He said she was enraged and it fueled her paranoia that he intended to steal from her. Alex said a fight ensued and his mother physically attacked him. He called the police and she was arrested but she sought a protective order against Alex and had him served with the restraining order while he was at work only a day or so later.
He drowned in embarrassment, shame and paranoia. Why would someone get a restraining order against their teen? He thought people would have no choice but to assume he was wretched. Nobody knew the truth. He worried no one would believe him. He still does.
“Even telling the story to you right now. I’m worried that you think I’m not telling the whole story,” he said. “But I am — my mom is so, so, so mentally ill. She cannot sympathize. The stuff is more important to her than anything else in the world.”
That photo album was more important to him than anything in the world though. But now the photos exist only in his memory, along with the only time he’d ever seen his parents hug — just once — when his father returned from a business trip in Manhattan after September 11th.
The restraining order was “thrown out pretty quickly,” but not before causing other issues for him.
“I could have fought this restraining order thing but I was terrified. I was off my meds. I was anxious and paranoid and losing my shit. I legally lived there, I was a minor, I could have fought it. But I just did not have it in me to do it,” he said.
She used the restraining order as another means of manipulation, he said. If he dropped his charges, she’d drop the restraining order and he could return to the home.
“My mom is a nanny and a housekeeper — so ironic,” he said. “She couldn’t continue to do those jobs without passing a background check, which she couldn’t do if there were charges for assault on her record.”
He did not want to move back home or drop the charges. He moved in with an untrustworthy man 10 years his senior, who he had met online. The abuse suffered there was, at the time, favorable still to his childhood home. When the scars of the new city were too thick to navigate, he returned back to his hometown, where he now lives with his partner.
Home, as an emotion, is something lost to Alex.
“I am longing deep, deep down for an environment that I can never return to and I don’t really want to return to. It’s really complicated.”
I am longing deep, deep down for an environment that I can never return to and I don’t really want to return to.
Alex, son of a hoarder
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Children of people who hoard say that emotional abuse is rampant in their homes – but there are few if any statistics to confirm this experience. During this project, a total of 283 self-identified adult children of people who hoard were polled about other forms of abuse in their household through an online support group. Only 24% of those respondents said there was no abuse other than the hoard and reported a favorable relationship with the parent who hoards. 73% of respondents experienced emotional abuse from their hoarding parent and 38% indicated they experienced physical abuse in the home.
It’s also worth noting, many people discount elements of their abuse and believe “it could have been worse,” or “other people had it worse.”
Those complicated sentiments around neglect and emotional abuse are one of the reasons recognizing non-physical abuse and healing from it is so difficult, according to Pete Walker in his book CPTSD: From Surviving to Thriving.
“The fact that verbal and emotional abuse can be traumatic is lost on many childhood trauma victims. … Attempts to acknowledge it are typically blindsided with thoughts that it was nothing compared to kids who were repeatedly beaten – who had it worse,” Walker wrote. “Yet for me, and many of my clients, verbal and emotional abuse was much more injurious than our physical abuse. … Unrelenting criticism, especially when it is ground in with parental rage and scorn, is so injurious that it changes the structure of the child’s brain.”
In a survey of 283 self-identified children of people who hoard, 73 percent said they experienced emotional abuse from their hoarding parent and 38 percent said they experienced physical abuse in the home.
Participants reported that the non-hoarding parent frequently participated in their abuse as well. Based on poll results, physical violence seemed more frequent when a non-hoarding parent was physically violent, the hoarding parents participated primarily in emotional abuse.
OCD Expert and hoarding researcher Karen Rowa said that when family members, often spouses, accommodate the hoarding person’s illness, that it can reach a boiling point.
“We know that when accommodation gets to a really significant degree, sometimes it spills over into hostility, and anger. So we can see the person is accommodating, accommodating and trying to help the family function. And then at some point, they’re just angry about it. So it increases the tension in the home.”
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When asked if they wished child protective services had intervened, participants’ answers varied. Child protective services and other social services were frequently the enemy of hoarded households. Some participants said they wished they’d been taught about emotional abuse in early childhood, they wished they’d been taught that children shouldn’t keep secrets for their parents.
Alex is one of the few who confidently wishes he had reported the abuse and regrets not doing it.
“I was experiencing some pretty intense sexual abuse as well and I would have been a lot better off. People are like ‘you say that but you don’t know what the system’s like,’” he said. “Listen, dude. Pretty much every bad thing that I could have experienced happened while I was living with my parents. At the very least I would have had my own bed if I was in foster care. Or even I don’t know, my own space on the floor, I would have been able to actually take a shit in a toilet instead of in the backyard.”
By the time they understood their situation, many survivors felt it was too late for meaningful intervention. Removal from the home would disrupt the few areas of life that might have been going well for them; like extracurriculars, school, or just contact with another trusted person.
Removal from the home would disrupt the few areas of life that might have been going well for them; like extracurriculars, school, or just contact with another trusted person.
Some said ‘no’ because their parents were less outright abusive and foster homes could have been worse. In one instance of a divorced couple — the hoarding parent was the less abusive and more nurturing parent for the participant.
Most participants wish intervention had occurred earlier, before their parents’ condition became seemingly impossible to dial back. They wished their family received help before it was a matter of child removal. Though many carry anger and resentment for their parents because of their abuse, none rejoice the wasted lives of their parents.
What do we know about hoarding so far? Not much.
Hoarded homes are rated on a severity scale of one to five. Laurel and Alex both grew up in level 5 hoards and thus their stories are more extreme. All levels of hoarding can be traumatizing to unwilling participants as it interferes with normal life function though.
The study of hoarding disorders is relatively young. The first academic study on Hoarding was published by Randy Frost and Rachel Gross in 1993 via Smith College’s Department of Psychology.
Gail Steketee, PhD, is an expert in compulsive hoarding who has made notable contributions to hoarding research.
“The first serious paper that came out about hoarding was (published in) 1993,” Steketee said. “So that’s very new (compared to) all of the work we’ve done on other problems, addictions, depression, anxiety, obsessions, etc. There are many decades of research on those. So we aren’t early in the game on this.”
The Diagnostic and Statistical Manual of Mental Disorders – otherwise known as the DSM-5 – is the official diagnostic handbook of mental illnesses in the US. Hoarding was first added to the DSM-5 in 2013.
Hoarding is classified as an Obsessive Compulsive related disorder within the DSM. OCD doesn’t explain the whole picture though. Cognitive processing variations are part of the puzzle.
“There’s no question that people with significant hoarding problems have difficulty with cognitive processing,” Steketee said. “Attention deficit is one – not everybody has that. But a lot of people do. They also don’t problem solve well because there’s a ‘forest for the trees’ kind of a problem.”
People with hoarding disorders consider too many factors when trying to make a decision.
“The focus is too wide, and they can’t narrow it to identify the problem and then think through the various possible solutions,” Steketee said.
She proposed a decision making process and how she might make a decision over a coffee mug, versus how someone who has a hoarding disorder might.
“‘Okay, how many of these do I have and does this one work better than others that I have?’ If it’s one that doesn’t keep the coffee hot, then I’m done with it.”
The decision making process doesn’t stop there for people with hoarding disorders.
“There are many, many features of this coffee cup. If I take them all into account, I’m going to be lost trying to make the choice,” Steketee said. “People often have difficulty sticking to schedules, there’s a wide variety of these features.”
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Jordan is 23 and comes from, what she called, “a long line” of hoarders. She was traumatized by her childhood home but she finds herself avoiding the same pitfalls.
“I still really struggle with daily maintenance and housekeeping. I find it affects everything that I do in a week. There’s a lot of anxiety around stuff.”
I still really struggle with daily maintenance and housekeeping.
Jordan, who says she comes from “a long line” of hoarders
Though not diagnosed, she utilizes tools popularized by people with ADHD to function in her daily life though, like bullet journaling.
“The way some people with ADHD function is that they can’t do something until the thing that they’re worrying about gets done, … Even if it was something small, like the dishes. I’d make a list of ‘pick up the sponge, soap, hot water, scrub.’”
Jordan’s apartment building is being sold, so she’s had multiple apartment inspections recently. For people who hoard and their children, “doorbell dread” is common. Doorbell dread is the anxiety associated with an outsider appearing on the doorstep who might see inside the home, which could then set off the catastrophe snowball they live in total fear of.
“I got the note saying that [the building maintenance] were going to be here to change the filters in our air conditioning. I just started looking around like ‘okay, what is first?’ It’s really hard to start somewhere when you want to start everywhere,” Jordan said.
Executive functions are a range of skills that enable a person to hold their attention, remember details and information, multi-task, time manage, switch focus, as well as plan, organize and execute something.
People who do not have typical executive function skills often find themselves prioritizing the wrong things.
Jordan said she finds herself gravitating to tasks that are less urgent instead of the tasks that need attention. She tried to clean their shared apartment while her boyfriend went for a walk. There was a pan of dried oatmeal in the sink, laundry piled up on furniture and the bathroom in need of cleaning. She didn’t find herself in any of those rooms though. Instead, she scrubbed the patio.
“Let me tell you the patio does need to be cleaned, but not as bad as the dishes or as the laundry needed being done,” she said. “But I was like, ‘I’m getting the algae off of this patio.’”
Another element of the DSM-5’s hoarding entry is the level of self awareness or delusion in the person with a hoarding disorder. The DSM-5 outlines levels of awareness ranging from “good or fair insight” to the hoarding behavior up to “absent insight” and “delusional beliefs.”
Jordan is self aware. She has seen family members repeat the cycle and wants to break it herself.
As she plans to move into their new house, she’s giddy about doing something she’s never done before; fill a home with furniture of her choice. Jordan’s family members have pushed “antique,” inconvenient furniture, weighing in excess of 100lbs into her possession every time she has moved. This time she says she will not take on anyone else’s burdens.
“It will be the very first time in my whole life that I won’t have enough furniture. I have always inherited more furniture than I had space to deal with,” she said. “I don’t know why my family doesn’t just deal in clothes or knick knacks. Why does it have to be 500 pounds of furniture!”
She laughed at the absurdity in the way only children of people who hoard can, or should. The grass is always greener under the other man’s hoard.
Unlike many people who actively hoard, Jordan is aware of the way fighting for space has made her partner feel, noting that he “felt personal erasure in his own space.”
Many people who hoard are not aware and participants of this project had parents across both ends of the spectrum – from aware – to complete delusion.
***
Marisa’s father was on an episode of A&E’s television show “Hoarders.” Her father, Ron, was very delusional and she became entrapped within his delusions. Ron was unable to cope with the traumatic method in which the show’s crew attempts to speedily empty hoarded homes. He rescinded his consent and told the crew to leave his property. Ron’s reaction is common. Most experts agree that this is not the ideal way to empty a hoarding person’s space.
He also refused the year-long after treatment which is the show’s compensation for its subjects. Luckily for Marisa, she was allowed to take advantage of the paid therapy instead.
Children of people who hoard often refer to “the path,” which is communally understood as the hoarding person’s discerned way to get from point A to point B. Prior to Ron’s move to assisted living, he spent some time in the hospital. One day he sent Marisa to get something from the house.
Children of people who hoard often refer to “the path,” which is communally understood as the hoarding person’s discerned way to get from point A to point B.
“I knew about the path but I didn’t know about this one specific part of the path. By this point, the floor was gone,” she said. “The path was just crawling over things. And I fell into it — to my hip — full of stuff. Thank God I had someone with me to help pull me out because I was a little worried. … That was one of the first moments where it was overwhelming, even for me — having grown up in it.”
Marisa retrieved the item her father asked for and told him what had happened when she returned.
“The first thing he did was yell at me,” she said.
She dropped into a huskier voice and imitated her father.
“‘You dumb shit. You’re supposed to put your hand here, here and here and do it like,’” she dropped his affect and bounced back to her natural tone.
“He described contorting himself, like a monkey — how you’re supposed to crawl around this one spot [in the house] so you don’t fall in the pit.”
She didn’t defend herself. She said it felt completely normal at the time and she accepted the abuse.
“I felt like I was the stupid one. I legitimately felt like I was a stupid one — that I should have known how to not fall in his path of the pit of despair.”
Her father relied on her to such a degree that she was completely sucked into his delusions and codependency.
“I was brainwashed. I’m still working my way out of it,” Marisa said.
She described another instance further back into her childhood. She invited another girl to her home in elementary school.
“Obviously she went and told everybody else how not normal my house was, but I still didn’t understand what it was that I was meant to be ashamed of, … But I knew I was supposed to feel shame. I was just trying to make a friend.”
Hoarding in the media
The show “Hoarders” was Marisa’s first exposure to the disorder. She did not watch the show before applying to it. In hindsight, she says she probably should have done that. She didn’t understand what she was getting herself into when she sent in an application. She said she realizes now that her father was traumatized by the process of attempting to clear his home.
“You don’t know what you don’t know,” Marisa said. “All I could see was that this is an opportunity for help from professionals.”
Few people in Marisa’s position would blame her for what she did – especially given the insurmountable hoard he created, the risk for his health and the implications for her future. Children of people who hoard also live in fear of inheriting the house and responsibility of the hoard when their parent dies.
The TV show prompts scoffs and disdain from a lot of people who grew up in hoarded homes.
Natalie is 43 years old and working on her dissertation in theatre history. She grew up in a home that was around a level 4 hoard and had over 50 cats at one point. She hates the show.
“I took one look at what it was and was like, ‘I’m not gonna watch someone’s mental illness get exploited for reality TV,’ she said.
Like many others, it did help her put a name to the condition but that didn’t lessen their moral objections to the program.
“People would talk about hoarders like they knew what they were talking about based on this TV show,” Natalie said.
She said the media influence encouraged dehumanizing attitudes toward the people depicted.
“I think that show has been incredibly damaging. I hate it when people bring it up. … The people I come across in my daily life don’t seem to see the people on Hoarders with any sort of compassion at all. I think that’s what really bothers me, …I meet people in my daily life that will just make fun of it. They don’t see that it’s a real thing.” Natalie said.
Rowa said that media portrayal of hoarding is important. The portrayals might be interesting because of the sensationalism, but they’re not representative of a true situation based on her experience, she said. Harmful material will perpetuate stereotypes, shame and ultimately decrease people’s willingness to seek help, she said.
“I’m not sure how helpful it is sometimes, some of the things that are in media, …” Rowa said. “I think we need to be very careful about good information, information is important, but that has to be good and accurate information.”
The television show was not around in her childhood, but discussing the impacts and dehumanization of the shows’ subjects caused Natalie to dip back into the feelings of shame that have followed her since youth.
“People have always been mean about it. When I was a kid, no one would come to my house, … or if they did, it would get all around the school,” she said. “And then everyone knew that I was … trash that came from trash.”
“Bob’s Burgers,” the popular adult cartoon, has made its own mistakes in messages about hoarding. Season 8, Episode 5 is titled “Thanks Hoarding.” The story of the episode follows the Belcher family’s realization that their friend and regular handyman Teddy is hoarding. The episode follows the Belcher’s as they first attempt to clean Teddy’s hoard – then ultimately come to the conclusion that Teddy is quirky and they love him – hoard and all.
Hoarding is not a quirky personality trait – it’s a disorder that can literally entomb those who suffer from it.
Hoarding is not a quirky personality trait – it’s a disorder that can literally entomb those who suffer from it. In Singapore, a pair of sisters were found in a state of skeletal remains in their hoarded home. One had died and the other remained in the house, reclusive until her own death. Successful Emmy-nominated set designer Evelyn Sakash, who worked on hit show Orange Is The New Black, was recently found dead under a pile of rubbage in her home. In another recent incident, a house fire killed a 25-year-old man with autism who lived with his hoarding mother in Milwaukee. Hoarded house fires are a fatal end to many hoarded homes and a prospect that haunts many adult children of hoarders long after they leave home. Hoarding is a life threatening and progressive disorder.
Children of people who hoard are the unwitting “field experts”
Because of the isolation involved with hoarding disorders, few people know or see what goes on day to day inside of hoarded family homes.
“There are some people who have a very intimate knowledge of these [hoarded] homes,” Chabaud said in a 2012 Youtube video.
“It is the children of hoarders. They watch the disorder progress from its early forms into a very severe state,” she said.
Most project participants interviewed said that they believe they have valuable insight about the illness and its particulars. Many feel a sense of frustration that they aren’t more included in hoarding research. Not only did they watch the disorder unfold, many have seen it progress in various family members, across generations, and feel they might see things that researchers and therapists cannot.
Hoarding and hoarding community response researcher and expert Christiana Bratiotis agreed.
“I think most of us who have spent any amount of time researching this field agree there are countless parts of this problem that we have not yet begun to systematically study and understand,” she said. “But the amount of research that has been done around family responses generally, has been very limited. … But I think you’re right that there is a perspective yet unexplored there.”
Not only could the children of people who hoard be a key to understanding hoarding, but their own syndrome needs understanding and support too.
A syndrome is a group of symptoms that occur frequently together. Growing up in a hoarded home doesn’t have an acknowledged syndrome yet. People who grow up in hoarded homes rarely find adequate therapeutic help. Their lived experiences aren’t researched and therapists don’t have proper understanding and training to adequately treat or support children of people who hoard. Even qualified therapists unknowingly victim blame their clients by asking “why didn’t you just clean?” Questions like that are hurtful and shame imbuing for survivors of hoarded homes.
This is why online support groups have been so important to this population, those who’ve lived it know what they shouldn’t say.
A lot of the support groups online seem dominated by people who are Generation X and older though. Attitudes and mindsets vary across generations in general, but also for survivors of hoarding. So Alex created his own online space, a Discord channel for young adult children of people who hoard.
He dreams of one day helping children and young adults escape their hoarded homes and educating the public on the issue and experience.
His main goal right now, though, is just to exist and enjoy it as much as possible. He jokes that he has no career aspirations.
When times are hard, he holds his own hand. He is still learning to work through his triggering experiences. He is still working on nurturing the inner-child whose resourcefulness got him through a living nightmare. If it weren’t for his love of reading, things might look different for him right now he says.
“Thank God, for my sense of imagination,” he said. “There’s no way I would be alive without my sense of imagination.”
