Saturday, October 26, 2013

Elder abuse: Elderly living — and dying — in silence


SYDNEY (AP) — By the time the ambulance showed up to the house, the old woman's screams were, as the paramedics would later tell it, already at a 10 out of 10.

On a bed in the foyer lay 88-year-old Cynthia Thoresen, her eyes screwed up in agony, her fists clenched, with an untended broken leg. Feces caked her body, from her arms down to her feet, filling the crevices between her toes and under her fingernails.

The fact that Cynthia even lived in the house was a surprise to most of the neighbors. None had ever seen her. None had any idea she'd spent her final days in hellish pain after a fall. None knew that her daughter and caretaker, Marguerite Thoresen, had waited weeks before calling for help, or that the help would come far too late.

In the end, Cynthia Thoresen joined a large and growing cohort of elderly people across the world who live — and increasingly die — in silence. They are unseen and unheard, left to fend for themselves against a problem society has barely begun to notice, let alone fix: elder abuse.

This type of abuse, which in many cases includes neglect, is still so hidden that it is hard to quantify. But the broad picture gleaned from hundreds of interviews and dozens of studies reviewed by The Associated Press is clear: Tens of millions of elders have become victims, trapped between governments and families, neither of which has figured out how to protect or provide for them.

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EDITOR'S NOTE — As the world ages faster than ever, who will care for the old? This story is part of an occasional series about elder neglect and abuse worldwide.

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Most of the elderly live with relatives or at home, and researchers estimate at least 4 to 10 percent of them are abused, likely much more. Even by the lowest count of 4 percent, that means about 30 million people.

The demographics alone show clearly that the problem is growing. By the year 2050, there will be more old people on earth than children for the first time in history, because of rising life spans and falling birth rates.

Australia, where Cynthia Thoresen lived, is a developed, wealthy nation considered progressive in its treatment of seniors. But even in high-income countries, the rate of abuse is 4 to 6 percent, according to the World Health Organization. And even here, the system failed Cynthia, over and over again, in life and in death.

"Nothing in the past has disturbed me like this job disturbed me," paramedic Christopher Curtis told police. "I've not seen anyone, regardless of their age, that could withstand the level of pain inflicted by a fractured femur for five seconds, let alone three weeks."

And yet Cynthia Thoresen lay helpless for up to three months, screaming into the silent void of a world that had forgotten her.

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For some, aging in today's world can be a slow slide into invisibility.

In study after study, elders say they exist in the shadows, at home or in institutions. Their words are dismissed. Even their bodies shrink. Sometimes they become invisible to themselves, as the cruelty of dementia robs them of the memories of who they once were.

This invisibility is reflected in the laws and practices of society.

Information on elder abuse lags decades behind research on child abuse. Only a handful of countries legally require the reporting of suspected elder abuse, compared to dozens for child abuse.

In the U.S., which researchers consider relatively advanced, the government passed the Elder Justice Act in 2010, compared to 1974 for its counterpart on child abuse. No more than two cents of every dollar spent by the federal government on family violence goes to elder abuse. And studies of domestic violence tend not to include victims older than 49.

Researchers can't even agree on who is an elder, let alone what elder abuse is. Depending on the country and culture, the definition ranges from physical and financial abuse to emotional cruelty and even disrespect.

"Here in Canada, millions of dollars have been spent on definitions and they go around in a circle and it drives me crazy," says Elizabeth Podnieks, founder of World Elder Abuse Awareness Day. "It's extremely hard to both identify and to address."

Other data from the World Health Organization, the United Nations, aged care advocates and academics fills in the edges of a hazy but distressing snapshot.

Only one in five older people worldwide has a pension. Elders figure prominently among the more than 100 million who fall into poverty each year because of health-care expenditures. And the suicide rate among men over 75 is the highest in the world.

"I think what's underneath it is ageism, and the belief that, well, old people have had their life and so if they die, they die," says Gloria Gutman, president of the International Network for the Prevention of Elder Abuse. "But what an awful way to die."

Cynthia Thoresen's story can be pieced together through government records, faded newspaper clippings and decades-old memories, along with legal testimony and police documents released to the AP under a freedom of information request. Marguerite Thoresen did not answer repeated requests, by phone, email and letter, for comment.

Cynthia's world began to shrink with a fall that left her injured, dependent and, ultimately, isolated. It is a common problem: About a third of people over 65 fall every year, according to the WHO.

She was born on Jan. 10, 1920, as Cynthia Anne Carey, one of four children of a British couple who whisked the family from Shanghai to the UK and back.

Cynthia eventually married a Norwegian named Arild Thoresen, and moved to Victoria in southern Australia. She stayed home to raise their children, Inger, Thorolf and Marguerite.

After Arild and Inger both died, Cynthia relocated to Perth in the west, where Marguerite and her husband John had settled with their daughter, Anita. One day she tripped while walking the dog, resulting in a partial hip replacement.

After that, Cynthia struggled to keep her house clean; ants were everywhere and the dishes piled up. Marguerite decided Cynthia should move in with her.

In 2001, Marguerite applied for a government carer's benefit for Cynthia's upkeep. The benefit came to around $500 every two weeks, Marguerite said. She told the coroner this money was her only income before her mother's death, apart from money for one article she wrote for a website.

Once the payments started, the government welfare agency, Centrelink, never asked for further medical updates on Cynthia, Marguerite said.

Cynthia also vanished from the health care system. Medicare records show that until 2003, she regularly saw doctors and took prescription medications; Marguerite said the doctors' visits were covered by government health care. But after 2003, Cynthia never saw another doctor, never filled another prescription.

She simply slipped through the cracks, showing how the protection of social networks can evaporate with age. A doctor or teacher may notice the bruises on a child. But almost nobody sees the bruises on a secluded older person — and those who do may chalk them up to aging.

Marguerite's explanation, years later, for why she stopped taking her mother to the doctor: "Well, she didn't say she was ill...She seemed happy."

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In 2007, Marguerite moved with her husband, daughter, grandsons and mother to a heavily-wooded suburb of the Queensland capital, Brisbane.

There, Cynthia's world shrank to a pinpoint.

In the 18 months Cynthia lived in the one-story house, no visitors were invited inside. The family was almost never seen. Marguerite's main interaction with her neighbors involved a campaign she led to stop the local council from cutting down trees on her street.

Even in life, Cynthia was a ghost. She didn't talk on the phone or write letters. Her only other close relative, her son Thorolf, lived nearly 1,700 kilometers (1,000 miles) away.

Dementia left her confused at times. Occasionally, she spoke.

Mostly, she was silent.

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The events that led to Cynthia's death started one morning, probably in late November 2008, with a pool of liquid on the rug next to Cynthia's bed. Maybe it was urine, or maybe a spilled drink. Marguerite's husband, John, spread newspapers over the wet patch and went to work.

When the family found Cynthia, she was on the floor, possibly having slipped. She moaned as she was hoisted back up.

Marguerite figured she'd sprained her knee and ordered her to stay in bed. No one called an ambulance. Cynthia had also fallen in Perth, Marguerite said, and paramedics had recommended bed rest.

Marguerite left a towel underneath her mother to soak up her excrement.

She said she changed the towel often. She said she fed her mother soft foods — eggs, chicken, fruitcake. She said Cynthia only refused to eat in the third week, which Marguerite figured was due to a stomach bug.

Marguerite finally called the ambulance on Dec. 17, 2008, thinking the problem might be stomach cancer instead.

She said the screaming only began when she and her husband moved Cynthia to a bed near the front door, stressing her broken leg.

She said until this point, her mother seemed fine.

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Marguerite opened the door and paramedics Curtis and Rebecca Whiteley were hit with the overwhelming stench of stale urine and feces.

They began to question Marguerite:

Has your mother suffered a trauma?

No.

Has she fallen?

A few weeks ago. Do you think her leg is broken?

Screaming, screaming, screaming.

Curtis tried to walk down the hallway, but Marguerite shut the doors to every room.

Cynthia's screams grew louder. Marguerite demanded the paramedics alleviate her pain.

My mother got to 88 years without going into a nursing home, she told them. We've done a good job.

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There is no gentle way to describe the state Cynthia was in when she arrived at the hospital.

Her chafed skin was covered in bedsores and feces. Her toenails were overgrown and curling, her right foot riddled with infections, and she had no teeth or dentures. She was dehydrated and malnourished, and couldn't speak.

Most troubling, her swollen right leg was 10 centimeters (4 inches) shorter than her left, the result of a fracture healing improperly.

Marguerite didn't ride to the hospital with her mother. Staffers called her repeatedly.

"I think we should discuss your mum," a social worker told Marguerite over the phone. "We are really concerned about her. She's not at all well."

Marguerite didn't show up to the hospital for three days.

So doctors called the state Adult Guardian to gain consent to operate. But the fracture was too severe and the delay in treatment too long; the break appeared between 3 and 12 weeks old.

On Dec. 30, the doctors recommended palliative care. Marguerite said no, then yes, then asked for her mother's transfer to another hospital. The doctors said Cynthia was too fragile.

Marguerite threatened to call the police if staffers touched her mother again. Hospital officials scheduled an urgent family meeting. Marguerite did not attend.

Cynthia died at 6:15 p.m. on Jan. 3, 2009. She was one week shy of her 89th birthday.

The coroner would not hold the inquest hearing into her death until four years later.

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In Australia, as in many other places, experts say the legal system is not set up to adequately prevent or punish elder abuse. The few regions with mandatory reporting laws — including most U.S. states, some Canadian provinces and Israel — catch only a tiny fraction of cases.

Since Australia introduced limited mandatory reporting in 2007, alleged nursing home assaults jumped from 925 to 1,971 in 2011-12. But the law applies only to government-subsidized homes for cases involving sexual abuse or "unreasonable use of force." That phrase gives nursing homes wide discretion in what — or whether — to report.

Even when cases are reported, victims seldom see justice.

Dianne Pendergast spent five years as Queensland's Adult Guardian investigating hundreds of allegations of abuse. Only one case was prosecuted.

"People won't prosecute — whether it's police, whether it's family members — because it involves family business," she says. "Because it's private. Because there's a level of abuse that's tolerated in the community that none of us wishes was there. We all turn a blind eye."

Stereotypes further cast elders as lousy witnesses and abuse as tough to prove, says Paul Greenwood, head of San Diego's Elder Abuse Prosecution Unit, one of the most aggressive in the world.

The lead police investigator for Cynthia's case recommended amending the law to include a specific crime of elder abuse. However, Eileen Webb, an elder law expert at the University of Western Australia, said the problem is not a lack of relevant charges, but an unwillingness to get involved.

"The laws are there," Webb says. "It's a matter of will."

Cynthia was as invisible to society in death as she was in life.

On May 13, 2013, Queensland Coroner Christine Clements held the inquest, a court-like proceeding convened after unusual deaths in Australia.

The investigator, Det. Sgt. Glen Skugor, took the stand first. The case had bothered him, he said. It had bothered everyone — the paramedics, the doctors, his fellow officers.

The autopsy concluded Cynthia died from a blood clot in her lung, sparked by the leg fracture. In an expert opinion, Dr. Stephen Morrison, head of thoracic medicine at Royal Brisbane & Women's Hospital, said her condition suggested a "severe degree of neglect...to the point of cruelty in a distressed, demented and totally dependent patient."

Officers who photographed Cynthia's body noticed bruising on her arms and midsection. The police contemplated several charges: manslaughter, failure to provide the necessities of life, negligent acts causing harm, torture. But the doctors couldn't say beyond a reasonable doubt that Marguerite's care had directly caused Cynthia's death, and similar cases had failed to nab convictions.

And so police closed the case. No charges were filed. In the eyes of the law, Cynthia became a nonentity.

Abuse of the elderly comes most often from a spouse or child, and the key to Cynthia's story lies with her daughter, Marguerite — a complex puzzle.

She holds journalism and business degrees, and an eBay store attached to her phone number sells ebooks on topics such as bee keeping, shoe making and welding.

The few people who know her describe her as introverted and odd, but also compassionate. She took in scores of unwanted rabbits and ran an information service dedicated to their care.

Astrid Herlihy, who met Marguerite through a Perth animal rights group, remembers her as a vegetarian, sensitive and distant. Marguerite was also depressed and paranoid, according to her own testimony, possibly in part because of a stalking incident involving a bullying neighbor.

"She really had just about given up on the world," says Herlihy, who was never invited into Marguerite's home. "I think she was pretty disillusioned."

In a poem on her rabbit care website called "Everything is wrong," Marguerite writes:

"And as we deny that our world is dying, Mother Nature sits abandoned, quietly crying."

Another poem decries the fate of a puppy.

"Miserable howling pierces the night as the pet shop puppy cries a lament that nobody hears," she writes.

"...The solitary victim left to cry alone."

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Marguerite didn't want to talk about her mother's death, fearing she might incriminate herself. But the coroner ordered her to testify.

For two hours, Clements and the lawyer, Emily Cooper, grilled her.

Through it all, Marguerite seemed detached. She spoke slowly, in a breathy voice. And she showed only the slightest agitation when pressed about the feces covering her mother's body, which she had once suggested might be chocolate ice cream.

The excrement? There wasn't that much. Cynthia's screams? They weren't that loud. The stench of urine? The result of her grandson running around without a diaper.

She hadn't put her mother in a nursing home because, she said, Cynthia disliked them.

"She had a philosophy of people staying with the family when they were old," Marguerite said. "And she also hated strangers."

She hadn't accompanied her mother in the ambulance because she didn't think it was allowed. She hadn't visited for three days because her husband was too busy to join her.

"You didn't think the urgency of seeing your mother in hospital sort of overrode you having someone to go with?" Cooper asked.

"I didn't think she was that ill," Marguerite replied.

"So you didn't believe what the hospital was telling you?"

"No."

Marguerite said she hadn't minded caring for Cynthia. But Cooper read from a statement by the hospital social worker, who quoted Marguerite as saying: "It was really difficult to care for my mother."

What had Marguerite meant by that?

"I have no idea. I was probably under a lot of stress."

Marguerite finally conceded that perhaps she should have called an ambulance a week earlier. But no sooner.

Her answers did little to satisfy the increasingly frustrated coroner. Why hadn't Marguerite taken her mother to see a doctor for years, despite seeing doctors herself?

"Well, she wasn't sick."

Cooper asked point-blank: Had Marguerite provided Cynthia appropriate care?

"I believe that up to that last fall, she had very good care," Marguerite replied. "I did my best."

And after the fall?

"I probably could have judged the situation better."

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The coroner issued her 15-page findings report just over a week later. In it, the word "pain" appears 30 times.

Clements found Marguerite "failed her mother entirely" by not taking her to a doctor for years, and her explanation was "unsatisfactory and implausible." She called Cynthia's bedbound final weeks "unforgiveable," and concluded she would probably have been better off in a nursing home.

"It is an appalling thought to consider the pain endured by Cynthia Thoresen during this period when she was totally at the mercy of her daughter's inadequate regime of 'care'," she wrote.

The coroner suggested re-examining the law and requiring annual medical reviews from those who receive the carer's benefit.

In the meantime, Marguerite's brother and sister-in-law declined to be interviewed. Police refused to talk. Centrelink referred AP's questions to the Department of Families, Housing, Community Services and Indigenous Affairs, which refused to say whether it would change its assessment policy. The state attorney general released a brief statement saying he had referred the case to the Director of Public Prosecutions — which refused to comment. And, following a freedom of information request from the AP, the state Department of Justice and Attorney-General released just 30 heavily-redacted pages from the 660 in Cynthia's case file.

From all involved: Silence.

"With elder abuse, no one wants to touch it. Any nugget of information that might lead to revelations of abuse is always swept under the carpet," says Lynda Saltarelli, founder of Aged Care Crisis, an Australian advocacy group. "As a community, we should all hang our heads in shame over the fact that it's remained hidden."

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In the end, the lawyer concluded there was no evidence of malice from Marguerite, but her explanations were "quite ridiculous."

The coroner grappled with all the unknowns. How had Cynthia become so isolated?

"The evidence is so troubling that an elderly person who is so dependent, so vulnerable, died such a death," Clements said. "The question is, how as a society can we help such an event occurring? We don't want it to happen again."

Does it come down to changing the law? she mused. Or is it about moral, family, social responsibility?

Her voice was resigned.

"I don't know that, unfortunately, Ms. Thoresen has gained much insight into her own family workings through this process," Clements said. "I don't know whether she herself needs some help."

The coroner let out a small sigh.

"I don't know."

Her words were met with silence. Marguerite had already left the room.

Source: http://news.yahoo.com/neglected-elderly-australian-endures-brutal-end-204041615.html
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