All too much: the people who can't let go
When you visit Linda Sexton at her home in the Yarra Ranges town of Seville, she gives you directions not just to her street address, but to her door.
Can't come through the main gate. Front door is blocked. Look for the gap in the fence near the old birdcage. Follow the path (past the 44 gallon drums and broken white goods and clumps of onion weed) to the back door.
"You understand that I'm ashamed of myself?" she says, cracking open her boarded-up entrance, wary of revealing the labyrinthine mess inside. "I didn't used to be like this."
The four-bedroom brick house where the 66-year-old retired secretary raised three children was once her palatial pride and joy. It is now a home to heartbreak and despair, where it is difficult or impossible to navigate the clutter that is bagged and boxed, heaped and stacked and spread throughout every corner.
There is dust and damp and rot here, and the smell of possum urine and kitty litter faintly masked by White King and Glen 20. The halls and passageways are so congested that Sexton estimates she has not set foot in her master bedroom in more than a decade.
The devolution was gradual. At first she filled her bedroom with cherished mementoes and slept in spare rooms. When those were filled - with clothes and books and bric-a-brac - she began sleeping on the couch. When the lounge, living room, dining area and kitchen overflowed with items found and scrounged, she was forced farther back.
Now there is nowhere left. A bar fridge and toaster on a shelf in the laundry act as a makeshift kitchen. She sleeps on a single bed in her bathroom.
"I want my home back. I can visualise how I want it - I just don't know where to start. It's too overwhelming. I think I've lost the plot," she says. "At the moment I just cannot see the light at the end of the tunnel. It's just a big black hole."
Linda Sexton is not alone. Once she would have been called a pack rat, magpie or bowerbird - now she is known to suffer from hoarding disorder, a mental illness marked by the acquisition of (and failure to discard) possessions that appear to be useless or of limited value, creating living spaces that are so cluttered as to render rooms impossible to use for their intended purpose. The most reliable international statistics suggest that the disorder affects between 2 per cent and 6 per cent of the population, and it is not unreasonable to assume a similar figure locally.
"That's a lot of Australians," says Professor Michael Kyrios of Swinburne University, recently returned from an international hoarding conference in San Francisco. "I think there's a little bit of it in all of us, but there is a point at which it becomes a clinical disorder - an extreme version of normality."
Examples of the extreme end of the condition are frightening. In February a man in his 70s died in a Noble Park blaze that raged out of control because his belongings contributed to what the fire department calls "high fuel load". In April, the body of an 82-year-old Fitzroy woman was found underneath a pile of garbage in her own home, having disappeared 18 months earlier.
Such ghoulish anecdotes are easy to find. The inner-city man found dead sprawled on top of his belongings, like a dragon guarding his gold. The elderly woman whose toilet was covered in clutter, who instead used a litter tray to do her business, before bagging that business and storing it in another corner of the house.
Kyrios has worked extensively with Dr Randy Frost, the American author of The New York Times bestseller Stuff, and points out that we live in an age where we have simply too many possessions - a consumerist glut of unwanted and obsolete ephemera.
"What do we do with things that are kind of OK? Do we throw them away? Give them away?" Kyrios says. "Many of us can make those decisions - people with a hoarding problem can't."
Hoarding is not the same thing as squalor, but neither are the two mutually exclusive. Some say hoarding is a behaviour and squalor is an environment, or that hoarding is "dry" where squalor is "wet". Unfortunately there is a point at which the two can converge. Studies show the average age of onset for hoarding is between 12 and 20, but the critical mass of materials that can endanger people's welfare is often achieved in middle age, putting infirm sufferers like Sexton - who has recently had renal failure and a heart attack - at serious risk. She keeps herself impeccably clean, and totes a plastic bag of clothes to the local laundromat regularly, but her situation is clearly dire.
The Metropolitan Fire Brigade in Melbourne began looking at hoarding in 2007, after noticing three deaths in a four-month period where hoarding was a feature of the fire. A "hoarding forum" and world-first study on the issue delivered a number of new findings about hoarding fires, the most striking of which was the fatality rate. Despite representing less than 1 per cent of all blazes, hoarding fires account for 24 per cent of all preventable deaths. With greater awareness, the MFB now reports a hoarding incident every 10 days. (There were 14 call-outs in July alone.)
It is difficult to grasp why people hoard. Sexton has had a tough life, including a violent marriage marked by beatings "between the neck and the knees", so no one could see the damage done.
Her children had their own problems. She took in street kids and was robbed often. "I started to flip my noodle and hide things ... I couldn't cope any more. I used to go op shopping, trying to replace what was stolen, and as you can see I'm surrounded by god knows what."
Now she chips away at the trove, sometimes clearing out a handful of black garbage bags each week. She recently scrubbed a pantry and cleared a china hutch. But she has setbacks, too. K-Mart had a sale on polar fleeces and Sexton bought five, thinking she would use them as gifts. She needed a new dressing gown because her old one was in a tub at the bottom of a stack of several tubs, so she bought two, unable to choose between colours.
"I don't know why I do it, but I know when I've done it I go through absolute hell. You feel as guilty as the devil."
Friends and family and case workers have tried to help. Once she came home to find six fires burning in her garden, the flames being fed by the contents of her sheds and garage. She stood amid the smoke and screamed.
Enforced clean-outs are potentially deadly. Some experts believe not involving the victim in the process is effectively "raping" them - removing their only defence against a cruel and difficult world.
"There have been suicides associated with clean-ups where people haven't been consulted or involved," says Dr Chris Mogan of The Anxiety Clinic in Richmond. "In some parts of the United States such council-driven clean-outs have been banned by law."
The need for en masse de-hoarding has seen a new type of business emerge. Christian Tuul has been clearing deceased estates for years and recently started his own company, Melbourne Property Cleanup. Half his business is clearing the former homes of hoarders, then doing repairs on the neglected buildings. He gets at least one job a week, and also has a unique relationship with the problem.
"My grandfather. He had a five-bedroom house with rooms filled to the ceiling. The family helped deal with the situation and he's in a better place now, with one room filled with all his stuff," he says. "I feel for the families. I felt for my grandmother. Something as simple as bringing a grandchild over is not possible in those situations."
Often his work means dealing with rotten food deposits, rats' nests and spider colonies. He once removed 150 cubic metres of waste from a home. And the contents are not as interesting as you might imagine, with the most common items being clothes, paper waste, books and trinkets.
"There's a sameness," Tuul says. "The items of value that we do find are usually family photos."
There are even professionals that exist to thin out hoards gradually, such as organiser and "declutterer" Wendy Hanes of Skeletons in the Closet. Hanes works with about 25 hoarding clients every year and sees it as her job to "create a thread of motivation" for clients facing eviction or something more serious.
"I've been working for a lady for 18 months who has lost custody of her four-year-old," she says. "I've had one lady dealing with the RSPCA, whose cat was killed by fleas. Can you imagine how many fleas it takes to kill a cat?"
The disorder has no "type", either. Hanes remembers the example of a local bank manager who went to work every day looking well put together, while her wardrobe was filled with spare car parts. Or the engineer who attributed her hoarding to the breakdown of a relationship and loss of her job - who couldn't discard jeans because, she said, she knew what it felt like to be discarded.
"You see all these ironies of people who are extremely competent in so many parts of their lives, but their home life has come undone - something's gone wrong and unravelled and they're almost living a double life."
Money is not the issue. Take the local pharmacist who uses a pile of clothes for a bed and tries to ignore the wasp nest in her living room. Or the woman whose hoarding was uncovered and turned out to be the owner of five houses in the same suburb. Or a hoarding property that had 40,000 rusty tin cans, sitting on land estimated to be worth $4.5 million.
The Australian Psychological Society sends Professor Kyrios all over the country, training psychologists to understand, diagnose and treat the condition. When his clients say they need to keep something, he poses a simple question: How is that working out for you?
"You're not sleeping in your room. You've got nowhere to shower or cook, and no one's been in your house for 20 years. So how is this going for you? Because I'm not seeing a lot of joy - I'm seeing you isolated and depressed and in poor health."
Group therapy is the latest tool to combat the disorder. In a similar vein to the work done with drug and alcohol addiction, peer testimonies are powerful, and the best individual success stories help to run their own group, with supervision. Anne Petts, of Ferntree Gully, has been working on her problem for eight months and can't wait to join group therapy this month.
"We don't want to be pushed but given support," Petts says. "We don't need criticism. We don't need bullying. We need help."
For families worried about a loved one, the best advice is to do as much reading as possible, and to realise that the problem has no quick fix. For disgruntled neighbours, contacting the local council should be the first move, but not so much to complain about an eyesore in the streetscape as to suggest help for a person at risk.
Unfortunately each council operates differently. Hoarding was only recognised as a distinct mental disorder in May, finally listed in the DSM-V (the most recent edition of "the psychiatrists' bible"). There is a lack of a standardised response. Is it an aged-care problem? A social services problem? No agency has taken ownership. And the work requires experience, motivation and patience.
Kevin and Val Ross live in a cramped flat in Melbourne's northern suburbs and don't see anything wrong with their collections. They are, in fact, houseproud. Ask Kevin why he needs his VHS tapes ("You can't get these any more"), or his pile of old CB radios ("I might need it if my other one breaks") or a random paint palette swatch book ("That's my mate's") and he always has an answer.
Suggest to him that people might think his hoarding extreme and he has another response: "I don't give a bugger. Tell them to go to hell. It's my stuff, why should I get rid of it?"
But there are those who have great insight into their own condition, who have a desire to get well and extricate themselves from a life strangled by stuff.
Linda Sexton is one such person. She still has a glimmer of hope, she says, if only she could find someone brave enough to volunteer to help her, even one day every few weeks. She is sure she could make inroads.
"I want my home back," she says quietly, her plaintive tone a mix of hope and desperation.
"I want to live like a normal person. And if I get that far, I want to volunteer to help other people in my position because I know what it's like - it's sheer hell."