A bulwark against anxiety: why someone becomes a compulsive hoarder

ONLY her eight cats, a crow and an owl see how the elderly Lenie Grové* struggles to drag her slight frame over the metre-high pile of rubbish as she moves towards her front door on a gloomy winter's day.

She grabs the handle, gasps for breath and falls.

In the breathless silence, voices speak and classic Sunday music echoes from her radio. Hours later, a worried woman breaks open her front door, the first time in years anyone has come into her house without Lenie stopping them.

The sight of her among the clutter and piles of rubbish (where there was once a linoleum floor), cobwebs, dust, mould and wads of excrement hits the visitor like a sledgehammer.

Her bed seems to be the blanket on the floor; the pillow is a stuffed plastic bag. The water supply has been shut off. Used toilet paper and empty water bottles around the toilet are a sign that no plumber was ever let in.

The bath, bed and furniture are hidden under moth-eaten boxes and bags full of newly bought, unused clothes. The fridge is mouldy, the kitchen counters packed. Torn instant porridge and coffee bags, used takeaway restaurant napkins, empty vitamin supplement bottles and asthma pumps are strewn across the rooms.

Over 25 years, Lenie has built a rampart of shame around her, her pets and possessions. The chaos is unimaginable to those who were concerned about her. They knew her as a slightly eccentric but engaged and beloved member of society.

Questions swirl. 

How does one survive physically and mentally among spiders, cockroaches and other critters, excrement, greasy skewers, opened and unopened cat food cans and boxes, and dozens of sticky and dusty cat and bird cages?

Only people who have seen this (other than TV viewers staring open-mouthed at an overseas programme on the phenomenon) will understand the true tragedy that is compulsive hoarding disorder. 

The causes of compulsive hoarding are as wide-ranging as the things that are hoarded.

Louis Awerbuck, a clinical psychologist in the Western Cape, says compulsive hoarding is a defence mechanism that stems from excessive anxiety and depression, conditions that feed on each other.

The hoarding behaviour is a way of organising the environment and thoughts and trying to control anxiety. The condition does not spare any culture, race, age, gender, intellect or level of education.

“Humans consist of thought, behaviour and feelings. The hoarder's functioning is limited on a cognitive level. The disorder is compulsive and affects the behaviour. It throws the person's thinking and thoughts off balance. The repetitiveness and compulsion of the behaviour make it difficult for them to show insight. Sometimes, they know their behaviour does not make sense and is illogical. The more intense and the longer the symptoms last, the more the boundaries of reality blur. The condition sometimes borders on psychotic thinking."

Relatives or those concerned cannot reason with the hoarder or make them give up the habit. “It doesn't help if you tell someone he doesn't need so many cups; it makes no impression because that is not what the compulsion is about. The person is sometimes like a drug or alcohol addict. The addiction or hoarding compulsion will always take precedence over any relationship. They lack understanding and, for example, cannot see the problems of unhygienic conditions.

“It is only when the person's personal life is drastically curtailed by hoarding or circumstances spiral out of control, or when the employer or authorities intervene, that the condition emerges," Awerbuck says.

Several dissertations and theses have been done in South Africa on the relevant conditions, and there is a lot of research on obsessive compulsive disorder.

Awerbuck says no South African aid organisations specifically help compulsive hoarders. People usually seek help from psychologists or organisations such as the South African Depression and Anxiety Group (Sadag).

“It is unrealistic that special organisations would exist for a disorder that only occurs in less than 4% of the population, especially in a country with many socioeconomic problems. Our health services are not functioning optimally while the healthcare needs in South Africa are overwhelming."

According to him, the degree of the disturbance is measured on a continuum. On one end are people who easily give up possessions, while on the other are people diagnosable with the disorder.

“It's about the inability to make decisions, perfectionism, avoidance and inattention. In addition, they have difficulty categorising, prioritising or organising information. Attention deficit disorder, autism spectrum and social isolation also play a role in the development of compulsive hoarding. Neurological research also shows that certain brain parts are more active in people who compulsively hoard than the rest of the population."

The causes of the disorder are highly complex.

Genetic and neurological factors may play a role, and there may be more than one hoarder in a family. Trauma, a state of anxiety, may bring about further anxiety and consequent compulsive hoarding. In addition, modern people live in societies predicated on excessive materialism, easy access to goods and a culture of disposableness.

“Amazon and Takealot are easy to use, and articles are relatively cheap. We are overwhelmed by advertisements, and the social pressure to own more is much worse than 100 years ago," says Awerbuck.

A fear of being excluded also arises. “The underlying anxiety is exacerbated when the hoarder thinks they need the shoes and what might happen if they don't have them. This creates a sense of impending doom, things that could go wrong, the Armageddon. The goods give security and fight the anxiety for the person who thinks he will survive the end of the earth alone," says Awerbuck.

According to international research sources, hoarders are perfectionists because they do not want to make incorrect decisions by throwing something away. They do not categorise possessions by type. They see each one of the collection of black T-shirts as unique and special and are terrified if an outsider disturbs the invisible order. People who hoard are often intelligent, well-educated and creative and refuse to be “fixed".

Genetics researchers Randy Frost and Gail Steketee say in their book Stuff: Compulsive Hoarding and the Meaning of Things that hoarders process information in other ways.

They call it an “inherited intense perceptual sensitivity to visual details" and speculate about “a special form of creativity and appreciation for the aesthetics of everyday things".

Other research states that non-genetic causes such as post-traumatic stress disorder, Tourette syndrome, specific brain injuries, clinical depression and dementia also play a role.

The condition is more common among people over 60 and those with other psychiatric diagnoses. According to Psychology Today, compulsive hoarders may also collect animals to an unhealthy level.

There are stereotypes such as the “quirky cat lady" and evidence that more women than men are animal hoarders. The elderly have to deal with the deaths of loved ones, financial problems, divorce and a jumble of thoughts, research by Hoarding UK shows.

People live longer and stay in their homes where they have their own, their deceased partner's and adult children's belongings. When an older adult loses independence, such as a job, status, senses, physical strength and intellectual understanding, hoarding can bring a sense of security and comfort.

More men have the condition but more women seek help. Only about half of cases are brought to the attention of professionals.

The Cleveland Clinic in America says the disorder can be treated with cognitive behavioural therapy and antidepressants. Psychotherapy can help hoarders understand why they hoard, and how to feel less anxious and learn new skills.

However, the prognosis for the disorder remains poor. Some people show improvement, but most still have symptoms that complicate their daily functioning. In the US, where researchers believe more than 19-million people have compulsive hoarding disorder, there are 100 help organisations. Hoarding UK holds an awareness week every May.

Jasmine Harman, presenter of the British TV show A Place in the Sun, has a mother who is a self-confessed hoarder and made a documentary, My Hoarder Mum and Me, in which she related how shy she was as a child, unable to invite friends over.

She also founded an organisation, Hoarding Support, to help people who suffer from the disorder and their families. Harman says that after the broadcast, they were overwhelmed with support from viewers. “Suddenly, we were no longer alone."

According to the American Psychiatric Association, people with compulsive hoarding disorder hoard worthless and useless items in an uncontrolled manner. They cherish their possessions and become anxious when someone threatens to take them away.

The association publishes the Diagnostic and Statistical Manual of Mental Disorders, which psychiatrists and other experts use to diagnose psychiatric illnesses and mental health disorders among adults and children, and obtain treatment.

Compulsive hoarding disorder was classified separately from obsessive-compulsive disorder (OCD) in 2013. OCD is when people have repetitive, unwanted thoughts or sensations (obsessions).

The repetitive behaviour involves handwashing, checking things or counting continuously, and can significantly interfere with someone's daily functioning and social interaction.

The separate classification was made after a study in 2010 by David Mataix-Cols of King's College London. He found that compulsive hoarders are more prone to depression than people with OCD and struggle more with decision-making. About 80% of hoarders do not meet the criteria to be diagnosed with OCD, and OCD medication is not as effective for hoarders.

People with compulsive hoarding disorder are not too lazy to tidy up, nor are they collectors.

Collectors organise possessions in a deliberate and targeted manner and display them with pride. In contrast, compulsive hoarders acquire possessions impulsively, with little planning and no theme. Over time, the belongings become a giant disorganised pile of junk that limits functioning and poses health and safety hazards.

“Why didn't we notice that?" are some of the first questions that the uncomfortable next of kin ask, says Charlene Archibald.

She and her wife, Sheriden Archibald, own the Pretoria franchise of Crime Scene and Trauma Cleanup. They have cleaned crime scenes and hoarders' houses across the country. The company website says only a select group of specialists and technicians with stomachs and nerves of steel can clear trauma and biohazard scenes.

Archibald says that in 90% of the cases, the hoarder was already dead when they were called in. A search usually ensues for a will and an identity document.

“Next of kin are never invited by the hoarder for cake and tea; family members must always pick them up at the front gate. The hoarders often die before the chaos is discovered. The next of kin are dumbfounded and are sometimes so ashamed that they ask us not to show up with our utility vehicles with licence plates and personal protective clothing.

“Hoarders, often educated people, don't think anything is wrong or that they need professional help."

In one case, however, a hoarder's siblings insisted that the house they inherited together be cleaned and sold.

“The traumatised hoarder pelted us with tinned food when we arrived. I visit her often to find out how she is doing."

When the cleaners enter, they often find that hoarding can extend from the garage to the top of the roof, where they “move with their backs against the ceiling".

Their protective equipment involves rubber boots that are thoroughly disinfected and reused after each job. The overall, made of waterproof plastic, is destroyed after use by a specialist company. The thick gloves are resistant to the disinfection chemicals. The light bulbs no longer work in most homes, so a headlamp is standard equipment. They wear safety glasses and breathe through respirators with filters to purify the air.

“The first task is to clean the part of the house where the person died. Any wooden floors or materials such as furniture, carpets, mattresses and curtains in which the smell of death or bodily fluids have penetrated are destroyed by specialist companies in line with legal safety requirements." Then a path is created through the clutter.

“It's better when just Sheriden and I clean, which can take us between two weeks and two months, depending on the conditions. 

“It can be filthy, with cockroaches, fish moths, rats, mould, and mildew growing in rooms. Rotten food and clogged drains are additional danger zones. It's physically dangerous among the rubbish. We don't bump into anything; we don't just lift bags, to make sure nothing breaks. We don't climb on things; we watch where we step because anything can fall on you."

In addition to physical safety measures, the Archibalds use health supplements to boost their immune systems and are vaccinated against lockjaw and hepatitis. In the cases they have dealt with, the hoarders were between 30 and 80-plus years old.

The collections of goods they come across in houses are astonishing. “In one house, there were millions of new and historic postage stamps. Another man had an awful lot of camping equipment and food, as if he expected the end of the world and having to survive alone."

In many cases, jewellery is cleaned and returned to the family. The cleaners are people who show courage, compassion and humanity to alleviate trauma.

“We who clean up make the situation more bearable. We listen and comfort the families. After we have cleaned a house forensically, we close the front door and hand it over to the family. Then they have to process the sad chapter and find closure."

* Not her real name

Sources:

JSTOR Daily: What’s Causing the Rise of Hoarding Disorder?

New England OCD Institute: Obsessive-Compulsive Disorder Comes In Many Forms

HoardingUK: About hoarding

Cleveland Clinic: Hoarding disorder

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