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Vocapedia > Health > Mental health > Asylum, hospitals, institutions, nursing homes, jail

 

 

 

Mental institution for old people.

 

Location: US

Date taken: July 1959

 

Photographer: Grey Villet

Life Images

http://images.google.com/hosted/life/l?imgurl=70c27498987ac8f2

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Specialists For The Mentally Ill

Undated > 1950s?

 

Photographer: Hank Walker

Life Images

http://images.google.com/hosted/life/l?imgurl=5c5a2ab6f6a3ce5a

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Specialists For The Mentally Ill

Undated > 1950s?

 

Photographer: Hank Walker

Life Images

http://images.google.com/hosted/life/l?imgurl=0dccab184db3bba9

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

mentally disabled        USA        2008

http://online.wsj.com/article/SB121218278041833793.html

 

 

 

 

 

mental hospital        USA

http://www.nytimes.com/2012/08/11/
opinion/life-in-a-mental-hospital.html

http://www.nytimes.com/2012/08/05/
opinion/sunday/erasing-the-past-at-the-ghost-hospital.html

 

 

 

 

 

be admitted to a psychiatric hospital        USA

http://www.npr.org/sections/health-shots/2016/04/14/
474210027/a-dearth-of-psychiatric-hospital-beds-for-california-patients-in-crisis

 

 

 

 

 

hospital for the criminally insane        USA

http://www.npr.org/2017/04/28/
526019758/a-haunting-60s-film-about-mental-illness-and-incarceration-becomes-a-ballet

 

www.nytimes.com/2014/01/05/nyregion/
dr-wv-cordice-jr-95-a-surgeon-who-helped-save-dr-king-dies.html

 

 

 

 

 

mental asylum        USA

https://www.nytimes.com/2018/06/02/
opinion/trump-asylum-mental-health-guns.html

 

http://www.npr.org/2017/05/14/
528159983/a-songwriter-gives-voice-to-the-silenced-women-of-rockwood-asylum

 

http://www.nytimes.com/roomfordebate/2016/05/09/
getting-the-mentally-ill-out-of-jail-and-off-the-streets

 

http://www.nytimes.com/2015/02/26/
opinion/can-there-be-good-mental-asylums.html

http://www.nytimes.com/2015/02/18/
opinion/the-modern-asylum.html

 

 

 

 

 

Rockwood Asylum        USA

 

19th-century institution

near what's now Kingston, Ontario.

 

"The Rockwood Asylum was built

between 1856 and 1868

on the north shore of Lake Ontario," (...).

 

"It was built as a way to deal with

a class of criminals and persons

designated insane

that the Kingston Penitentiary

and the Toronto psychiatric institution

couldn't handle."

http://www.npr.org/2017/05/14/
528159983/a-songwriter-gives-voice-to-the-silenced-women-of-rockwood-asylum

 

 

 

 

 

Bethlem Royal Hospital

(also known as Bedlam)

notorious asylum

from which the word Bedlam

entered the English language        UK

http://www.theguardian.com/science/2013/aug/08/
crossrail-tunnelling-unearths-burial-ground-bedlam

 

 

In 1375

Bedlam became a royal hospital.

 

It had been taken by the Crown

on the pretext that it was an alien priory.

 

It began the care

of mentally ill patients two years later

(the word 'care' here means

chained to the wall and,

when violent, whipped or ducked in water)

and specialised in the care of mental illness

from 1403.

 

Records show

that at this time it had one master,

a porter and his wife and nine inmates.

There were a number of servants.

 

Patient numbers steadily increased,

and records show

that it was being called 'Bedlam'

by 1450.

 

Early 16th century maps

show 'Bedlame Gate'

next to Bishopsgate.

 

It led into a courtyard

where a few small stone buildings were,

a church and a garden

could also be found here.

 

There were 31 patients housed

in a space for 24,

and the noise was

'so hideous, so great;

that they are more able to drive

a man that hath his wits

rather out of them'.

 

The whip and chains

were the usual 'treatment' for patients.

http://www.bbc.co.uk/dna/place-lancashire/plain/A2554157

 

http://www.bbc.co.uk/dna/place-lancashire/plain/A2554157

 

http://www.theguardian.com/science/2013/aug/08/
crossrail-tunnelling-unearths-burial-ground-bedlam

http://www.bbc.co.uk/ahistoryoftheworld/objects/p_f2h5zPQ7-SKTm-bJ82jQ

 

 

 

 

 

mentally disabled people

mistreatment at the Willowbrook State School

on Staten Island        USA        1970s

 

The deplorable conditions

at Willowbrook, a state-run institution,

seized the nation’s attention in 1972,

when Geraldo Rivera,

then a reporter for WABC-TV in New York,

put a spotlight on them,

showing children lying naked on the floor,

their bodies contorted,

their feces spread on walls.

 

His reports were broadcast nationally.

 

More than 5,400 people

lived on the Willowbrook campus,

making it the biggest state-run institution

for mentally disabled people

in the United States.

http://www.nytimes.com/2012/10/11/nyregion/
barbara-blum-who-rescued-abused-willowbrook-residents-dies-at-82.html

 

http://www.nytimes.com/2012/10/11/nyregion/
barbara-blum-who-rescued-abused-willowbrook-residents-dies-at-82.html

http://www.library.csi.cuny.edu/archives/WillowbrookRG.htm

 

 

 

 

 

institution / mental institution        USA

http://www.npr.org/2016/03/26/
471626195/with-just-pencil-and-paper-a-patient-found-escape-inside-state-hospital-no-3

 

http://www.nytimes.com/2015/11/01/nyregion/
robert-neugeboren-survivor-of-psychiatric-abuses-dies-at-72.html

http://www.pbs.org/newshour/bb/nation/july-dec13/graves_12-26.html

 

http://www.nytimes.com/2012/09/30/us/
ending-segregation-of-the-mentally-disabled.html

http://online.wsj.com/article/SB121218278041833793.html?
mod=hpp_us_inside_today

 

 

 

 

 

institutionalize        USA

http://www.nytimes.com/2013/09/20/
opinion/luhrmann-the-violence-in-our-heads.html

 

 

 

 

 

be put into psychiatric care        UK

http://www.theguardian.com/society/2014/feb/20/
mentally-ill-children-treated-on-adult-wards-far-from-home

 

 

 

 

 

psychiatric wards        UK

http://www.theguardian.com/society/2014/feb/20/
mentally-ill-children-treated-on-adult-wards-far-from-home

 

 

 

 

 

psychiatric abuses        USA

http://www.nytimes.com/2015/11/01/nyregion/
robert-neugeboren-survivor-of-psychiatric-abuses-dies-at-72.html

 

 

 

 

 

straitjacket        USA

http://www.nytimes.com/2015/11/01/nyregion/
robert-neugeboren-survivor-of-psychiatric-abuses-dies-at-72.html

 

 

 

 

 

integration        USA

http://www.nytimes.com/2012/09/30/us/
moving-mentally-disabled-from-institutions-to-group-homes.html

 

 

 

 

 

be lobotomised        USA

http://www.guardian.co.uk/news/2005/jan/11/
guardianobituaries.usa 

 

 

 

 

 

psychiatric care        USA

http://www.nytimes.com/2013/08/02/nyregion/brooklyn-
hospital-closings-a-blow-to-psychiatric-care.html

 

 

 

 

 

Broadmoor high-security hospital        2003        UK

 

A woman of 94

has been released

from Broadmoor high-security hospital

after being kept there for 40 years,

it is disclosed today.

 

By the end of her detention,

the woman was so frail

that she was capable

of very little movement.

 

She is now in a care facility

with no security provision.

http://www.theguardian.com/uk/2003/dec/10/
health.mentalhealth

 

 

 

 

 

 

 

 

 

 

 

 

 

 

mad

 

 

 

 

 

madness        UK

http://www.guardian.co.uk/commentisfree/video/2011/jan/31/
mental-health-psychology

 

 

 

 

 

madness        USA

http://www.nytimes.com/2011/01/15/
opinion/15herbert.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Added 3 March 2010

http://www.shutterisland.com/#/downloads/wallpaper

 

 

 

 

 

 

 

 

 

 

 

 

 

 

film > Martin Scorsese > Shutter Island        2009

http://www.shutterisland.com/

 

http://www.guardian.co.uk/film/filmblog/2010/feb/15/
martin-scorsese-shutter-island

http://www.guardian.co.uk/film/2010/feb/11/
leonardo-dicaprio-shutter-island

 

 

 

 

 

film > Sam Mendes > Revolutionary Road        2008

http://www.guardian.co.uk/film/filmblog/2009/feb/02/
revolutionary-road-titanic-kate-winslet

 

 

 

 

 

film > Jonathan Demme > Silence of the Lambs        1991

https://www.theguardian.com/film/
News_Story/Critic_Review/Guardian_review/0,,530779,00.html 

 

 

 

 

 

film > One Flew Over the Cuckoo's Nest        1975

http://movies.nytimes.com/movie/review?
res=EE05E7DF1739E76CBC4851DFB767838E669EDE

 

 

 

 

 

film > John Cassavetes > A Woman Under the Influence        1974

http://www.nytimes.com/movie/
review?res=9402E6D7143DE63BBC4C52DFB667838F669EDE

 

 

 

 

 

film > Ken Loach > Family Life        1971

http://en.wikipedia.org/wiki/Ken_Loach

 

 

 

 

 

film > Samuel Fuller > Shock Corridor    1963

 

https://www.nytimes.com/1963/09/12/
archives/screen-romantic-middleaged-men-and-womenof-love-and-desire-stars.html

 

 

 

 

 

film > Alfred Hitchcock > Psycho        1960

https://archive.nytimes.com/www.nytimes.com/library/film/
061760hitch-psycho-review.html

 

 

 

 

 

film > Alfred Hitchcock > Vertigo        1958

https://www.theguardian.com/film/2008/sep/26/
poster.vertigo 

 

https://www.nytimes.com/1958/05/29/
archives/vertigo-hitchcocks-latest-melodrama-arrives-at-the-capitol.html

 

 

 

 

 

 

 

 

 

Clearing the Fog in Nursing Homes

 

February 15, 2011

11:10 am

The New York Times

By PAULA SPAN

 

The woman, who was in her 90s, had lived for several years at the Ecumen Sunrise nursing home in Two Harbors, Minn., where the staff had grown accustomed to her grimaces and wordless cries. She took a potent cocktail of three psychotropic drugs: Ativan for anxiety and the antipsychotic Risperdal to calm her, plus an antidepressant. In all the time she’d lived at Sunrise, she hadn’t spoken. It wasn’t clear whether she could recognize her children when they came to visit.

Belinda Day Saylor Eva Lanigan, right, director of nursing at the Ecumen nursing home in Two Harbors, Minn., with a resident, Marjorie Labrie, 94.The Two Harbors home happened to be where Ecumen, which operates 16 nonprofit Minnesota nursing homes, was preparing an experiment to see if behavioral rather than pharmacological approaches could help wean residents off antipsychotic medications. They called it the Awakenings program.

“What’s people’s biggest fear? Being a ‘zombie’ in a nursing home,” said Laurel Baxter, the Awakenings project manager.

Any visitor can see what she means. Even in quality nursing homes, some residents sit impassively in wheelchairs or nod off in front of televisions, apparently unable to interact with others or to summon much interest in their lives. Nursing home reformers and regulators have long believed that this disengagement results in part from the overuse of psychotropic medication to quell the troublesome behaviors that can accompany dementia — yelling, wandering, aggression, resisting care. For nearly 25 years, federal law has required that psychotropic drugs (which critics call “chemical restraints”) be used only when necessary to ensure the safety of a resident or those around her.


The drugs can cause serious side effects. Since 2008, the Food and Drug Administration has required a so-called black box warnings on their packaging, cautioning that they pose an increased mortality risk for elderly patients. Nevertheless, a national survey reported that in 2004 about a quarter of nursing home residents were receiving antipsychotic drugs. (Among the antipsychotic drugs most commonly used in nursing homes are Risperdal, Seroquel and Zyprexa.)

Though they may be prescribed less frequently following the F.D.A.’s warnings, these drugs are still overused in long-term care, said Dr. Mark Lachs, chief of geriatrics at Weill Cornell Medical College. And once the pills are prescribed, residents keep taking them. “They get perpetualized, like insulin,” he told me, even though the behaviors they’re meant to soothe may wane anyway as dementia progresses.

“If a place is understaffed, if it takes particularly unruly patients, you can see how it happens,” Dr. Lachs added. “Behavioral interventions are far more time-consuming than giving a pill.”

Nevertheless, Ecumen’s Awakenings project emphasizes nondrug responses. “Medications have a place, but that shouldn’t be the first thing you try,” said Eva Lanigan, director of nursing at the Two Harbors facility.

So the home trained its entire staff (housekeepers, cooks, dining room servers, everyone) in a variety of tools to calm and reassure its 55 residents: exercise, activities, music, massage, aromatherapy. It taught people the kind of conversation known as “redirecting” — listening to elders and responding to them without insisting on facts that those with dementia can’t absorb or won’t recall.

“The hands-on, caring part is the most important,” Ms. Lanigan said. “Sometimes, people just want a hug. You sit and hold their hand.”

At the same time, consulting with a geriatric psychiatrist and a pharmacist, the home began gradually reducing the doses of antipsychotics and antidepressants for patients whose families agreed. Among them: the woman with the mysterious cries.

As Dr. Lachs pointed out, behavioral interventions are labor-intensive. Two Harbors hired an additional nurse to oversee those efforts, and Ms. Lanigan was available to answer staff questions around the clock. Ecumen estimates that introducing the program to a 60-bed nursing home cost an additional $75,000 a year for two full-time employees.

The results startled even the believers, however. Every resident on antipsychotics (about 10) was able to stop taking them, and 30 to 50 percent of those taking antidepressants also did well without them. When drugs still seemed necessary, “we tried to reduce them to the lowest dose possible,” Ms. Lanigan said.

Encouraged, Ecumen has introduced the Awakenings program to its 15 other nursing homes, using a $3.8 million, three-year grant from the state of Minnesota. “I believe we may learn that spending a little time now with a resident, preventing the use of psychiatric medications and their side effects, you’ll save time and money in the long run,” said Ms. Baxter, the project manager. “I’m optimistic.”

Of course, you can’t tell how well nondrug approaches work based on one facility’s outcomes. “We know how to reduce behavior problems and mood issues in controlled clinical trials,” said Kimberly Van Haitsma, a senior research scientist at the Polisher Research Institute in Philadelphia. “The actual nuts and bolts of how do you do this and keep it in place — over not weeks or months, but years — is a question the field is struggling with.” Turnover among both staff and residents is high in nursing homes, she pointed out.

But with reduced medications, the woman at the Two Harbors home did seem to awaken. She was able to speak — haltingly and not always understandably, but enough to communicate. And what she let Ms. Lanigan know, after years of being virtually nonverbal, was that she was suffering physical pain, the cause of her crying out.

It took doctors a while to find effective medications for her nerve condition, but they were eventually able to make her more comfortable without further fogging her mind. She stopped taking psychotropic drugs altogether.

None of this can halt dementia; it’s a terminal disease, and it took this resident’s life last year. But in her final months, she smiled and played balloon volleyball with other residents and could say she felt fine or was hungry.

“She engaged more. Her family came to help her eat,” Ms. Lanigan said. “It was a big change.”

 

Paula Span is the author of “When the Time Comes:

Families With Aging Parents Share Their Struggles and Solutions.”

Clearing the Fog in Nursing Homes,
NYT,
15.2.2011,
http://newoldage.blogs.nytimes.com/2011/02/15/
clearing-the-fog-in-nursing-homes/

 

 

 

 

 

Brain Power

Surgery for Mental Ills

Offers Hope and Risk

 

November 27, 2009

The New York Times

By BENEDICT CAREY

 

One was a middle-aged man who refused to get into the shower. The other was a teenager who was afraid to get out.

The man, Leonard, a writer living outside Chicago, found himself completely unable to wash himself or brush his teeth. The teenager, Ross, growing up in a suburb of New York, had become so terrified of germs that he would regularly shower for seven hours. Each received a diagnosis of severe obsessive-compulsive disorder, or O.C.D., and for years neither felt comfortable enough to leave the house.

But leave they eventually did, traveling in desperation to a hospital in Rhode Island for an experimental brain operation in which four raisin-sized holes were burned deep in their brains.

Today, two years after surgery, Ross is 21 and in college. “It saved my life,” he said. “I really believe that.”

The same cannot be said for Leonard, 67, who had surgery in 1995. “There was no change at all,” he said. “I still don’t leave the house.”

Both men asked that their last names not be used to protect their privacy.

The great promise of neuroscience at the end of the last century was that it would revolutionize the treatment of psychiatric problems. But the first real application of advanced brain science is not novel at all. It is a precise, sophisticated version of an old and controversial approach: psychosurgery, in which doctors operate directly on the brain.

In the last decade or so, more than 500 people have undergone brain surgery for problems like depression, anxiety, Tourette’s syndrome, even obesity, most as a part of medical studies. The results have been encouraging, and this year, for the first time since frontal lobotomy fell into disrepute in the 1950s, the Food and Drug Administration approved one of the surgical techniques for some cases of O.C.D.

While no more than a few thousand people are impaired enough to meet the strict criteria for the surgery right now, millions more suffering from an array of severe conditions, from depression to obesity, could seek such operations as the techniques become less experimental.

But with that hope comes risk. For all the progress that has been made, some psychiatrists and medical ethicists say, doctors still do not know much about the circuits they are tampering with, and the results are unpredictable: some people improve, others feel little or nothing, and an unlucky few actually get worse. In this country, at least one patient was left unable to feed or care for herself after botched surgery.

Moreover, demand for the operations is so high that it could tempt less experienced surgeons to offer them, without the oversight or support of research institutions.

And if the operations are oversold as a kind of all-purpose cure for emotional problems — which they are not, doctors say — then the great promise could quickly feel like a betrayal.

“We have this idea — it’s almost a fetish — that progress is its own justification, that if something is promising, then how can we not rush to relieve suffering?” said Paul Root Wolpe, a medical ethicist at Emory University.

It was not so long ago, he noted, that doctors considered the frontal lobotomy a major advance — only to learn that the operation left thousands of patients with irreversible brain damage. Many promising medical ideas have run aground, Dr. Wolpe added, “and that’s why we have to move very cautiously.”

Dr. Darin D. Dougherty, director of the division of neurotherapeutics at Massachusetts General Hospital and an associate professor of psychiatry at Harvard, put it more bluntly. Given the history of failed techniques, like frontal lobotomy, he said, “If this effort somehow goes wrong, it’ll shut down this approach for another hundred years.”

 

A Last Resort

Five percent to 15 percent of people given diagnoses of obsessive-compulsive disorder are beyond the reach of any standard treatment. Ross said he was 12 when he noticed that he took longer to wash his hands than most people. Soon he was changing into clean clothes several times a day. Eventually he would barely come out of his room, and when he did, he was careful about what he touched.

“It got so bad, I didn’t want any contact with people,” he said. “I couldn’t hug my own parents.”

Before turning to writing, Leonard was a healthy, successful businessman. Then he was struck, out of nowhere, with a fear of insects and spiders. He overcame the phobias, only to find himself with a strong aversion to bathing. He stopped washing and could not brush his teeth or shave.

“I just looked horrible,” he said. “I had a big, ugly beard. My skin turned black. I was afraid to be seen out in public. I looked like a street person. If you were a policeman, you would have arrested me.”

Both tried antidepressants like Prozac, as well as a variety of other medications. They spent many hours in standard psychotherapy for obsessive-compulsive disorder, gradually becoming exposed to dreaded situations — a moldy shower stall, for instance — and practicing cognitive and relaxation techniques to defuse their anxiety.

To no avail.

“It worked for a while for me, but never lasted,” Ross said. “I mean, I just thought my life was over.”

But there was one more option, their doctors told them, a last resort. At a handful of medical centers here and abroad, including Harvard, the University of Toronto and the Cleveland Clinic, doctors for years have performed a variety of experimental procedures, most for O.C.D. or depression, each guided by high-resolution imaging technology. The companies that make some of the devices have supported the research, and paid some of the doctors to consult on operations.

In one procedure, called a cingulotomy, doctors drill into the skull and thread wires into an area called the anterior cingulate. There they pinpoint and destroy pinches of tissue that lie along a circuit in each hemisphere that connects deeper, emotional centers of the brain to areas of the frontal cortex, where conscious planning is centered.

This circuit appears to be hyperactive in people with severe O.C.D., and imaging studies suggest that the surgery quiets that activity. In another operation, called a capsulotomy, surgeons go deeper, into an area called the internal capsule, and burn out spots in a circuit also thought to be overactive.

An altogether different approach is called deep brain stimulation, or D.B.S., in which surgeons sink wires into the brain but leave them in place. A pacemaker-like device sends a current to the electrodes, apparently interfering with circuits thought to be hyperactive in people with obsessive-compulsive disorder (and also those with severe depression). The current can be turned up, down or off, so deep brain stimulation is adjustable and, to some extent, reversible.

In yet another technique, doctors place the patient in an M.R.I.-like machine that sends beams of radiation into the skull. The beams pass through the brain without causing damage, except at the point where they converge. There they burn out spots of tissue from O.C.D.-related circuits, with similar effects as the other operations. This option, called gamma knife surgery, was the one Leonard and Ross settled on.

The institutions all have strict ethical screening to select candidates. The disorder must be severe and disabling, and all standard treatments exhausted. The informed-consent documents make clear that the operation is experimental and not guaranteed to succeed.

Nor is desperation by itself sufficient to qualify, said Richard Marsland, who oversees the screening process at Butler Hospital in Providence, R.I., which works with surgeons at Rhode Island Hospital, where Leonard and Ross had the operation.

“We get hundreds of requests a year and do only one or two,” Mr. Marsland said. “And some of the people we turn down are in bad shape. Still, we stick to the criteria.”

For those who have successfully recovered from surgery, this intensive screening seems excessive. “I know why it’s done, but this is an operation that could make the difference between life and death for so many people,” said Gerry Radano, whose book “Contaminated: My Journey Out of Obsessive-Compulsive Disorder” (Bar-le-Duc Books, 2007), recounts her own suffering and long recovery from surgery. She also has a Web site, freeofocd.com, where people from around the world consult with her.

But for the doctors running the programs, this screening is crucial. “If patients are poorly selected or not followed well, there’ll be an increasing number of bad outcomes, and the promise of this field will wither away,” said Dr. Ben Greenberg, the psychiatrist in charge of the program at Butler.

Dr. Greenberg said about 60 percent of patients who underwent either gamma knife surgery or deep brain stimulation showed significant improvement, and the rest showed little or no improvement. For this article, he agreed to put a reporter in touch with one — Leonard — who did not have a good experience.

 

The Danger of Optimism

The true measure of an operation, medical ethicists say, is its overall effect on a person’s life, not only on specific symptoms.

In the early days of psychosurgery, after World War II, doctors published scores of papers detailing how lobotomy relieved symptoms of mental distress. In 1949, the Portuguese neurologist Egas Moniz won the Nobel Prize in medicine for inventing the procedure.

But careful follow-up painted a darker picture: of people who lost motivation, who developed the helpless indifference dramatized by the post-op rebel McMurphy in Ken Kesey’s novel “One Flew Over the Cuckoo’s Nest,” played by Jack Nicholson in the 1975 movie.

The newer operations pinpoint targets on specific, precisely mapped circuits, whereas the frontal lobotomy amounted to a crude slash into the brain behind the eyes, blindly mangling whatever connections and circuits were in the way. Still, there remain large gaps in doctors’ understanding of the circuits they are operating on.

In a paper published last year, researchers at the Karolinska Institute in Sweden reported that half the people who had the most commonly offered operations for obsessive-compulsive disorder showed symptoms of apathy and poor self-control for years afterward, despite scoring lower on a measure of O.C.D. severity.

“An inherent problem in most research is that innovation is driven by groups that believe in their method, thus introducing bias that is almost impossible to avoid,” Dr. Christian Ruck, the lead author of the paper, wrote in an e-mail message. The institute’s doctors, who burned out significantly more tissue than other centers did, no longer perform the operations, partly, Dr. Ruck said, as a result of his findings.

In the United States, at least one patient has suffered disabling brain damage from an operation for O.C.D. The case led to a $7.5 million judgment in 2002 against the Ohio hospital that performed the procedure. (It is no longer offered there.)

Most outcomes, whether favorable or not, have had less remarkable immediate results. The brain can take months or even years to fully adjust after the operations. The revelations about the people treated at Karolinska “underscore the importance of face-to-face assessments of adverse symptoms,” Dr. Ruck and his co-authors concluded.

 

The Long Way Back

Ross said he felt no difference for months after surgery, until the day his brother asked him to play a video game in the basement, and down the stairs he went.

“I just felt like doing it,” he said. “I would never have gone down there before.”

He said the procedure seemed to give the psychotherapy sessions a chance to work, and last summer he felt comfortable enough to stop them. He now spends his days studying, going to class, playing the odd video game to relax. He has told friends about the operation, he said, “and they’re O.K. with it — they know the story.”

Leonard is still struggling, for reasons no one understands. He keeps odd hours, working through most nights and sleeping much of the day. He is not unhappy, he said, but he has the same aversion to washing and still lives like a hermit.

“I still don’t know why I’m like this, and I would still try anything that could help,” he said. “But at this point, obviously, I’m skeptical of the efficacy of surgery, at least for me.”

Ms. Radano, who wrote the book about her recovery, said the most important thing about the surgery was that it gave people a chance. “That’s all people in this situation want, and I know because I was there,” she said while getting into her car on a recent afternoon.

On the passenger seat was a container of decontaminating hand wipes. She pointed and laughed. “See? You’re never completely out.”

Surgery for Mental Ills Offers Hope and Risk,
NYT,
27.11.2009,
http://www.nytimes.com/2009/11/27/
health/research/27brain.html

 

 

 

 

 

What Happened to Ricky

In the '50s, disabled children
often disappeared into state institutions.
Now, one family seeks its lost son.

 

May 31, 2008; Page A1

The Wall Street Journal

By CLARE ANSBERRY

 

PORTLAND, Ore. -- Tom and Betty West committed their mentally disabled son to a state institution. His name was Richard, and he was three years old. It was 1959. The massive complex was remote and family ties not encouraged. The state eventually moved Richard to a different facility without informing the Wests of the location. Four decades passed without a family member laying eyes on Richard.

As they entered their 80s, the Wests thought increasingly about Richard, the fifth of their eight children. How was he? Where did he live? Mr. West wanted to make sure that, following his death, some of his pension flowed to Richard.

State officials rejected Mr. West's request for information, calling Richard's whereabouts private. The Wests hired an attorney who ran into the same roadblocks. "At that point, I thought there is nothing more I could do," says Mr. West, a retired dam builder who is 87.

The Wests belong to a generation of parents who decades ago relinquished their disabled children, usually at the urging of physicians or other authorities. From the 1930s into the 1960s, tens of thousands of these children entered state facilities, which offered services that local communities lacked. Many never saw their families again.

"Fifty years ago, families were often advised to place their child in an institution, and basically told that, for the good of the child and family, to forget that the person existed," says Charlie Lakin, project director of the Research and Training Center on Community Living at the University of Minnesota.

Back in the '60s, an Oregon family put their mentally disabled child in a public institution, and he eventually became a ward of the state. Recently, the family tracked him to a small group home and hope to retie lost bonds. (May 31)
Half a century later, that old policy is still haunting families across America. Middle-aged siblings want to find their absent younger brother or sister before it is too late. Aging parents wish they knew what became of their child. Cousins and nieces wonder about relatives known only by name and family lore.

Yet even as greater acceptance and inclusion greet today's mentally disabled children, many of yesterday's remain lost. Privacy laws can prevent families from finding their loved ones. In some cases, facilities have closed, scattering residents into group homes and apartments without family notification. About 40% of residents of large state institutions have no family contact, surveys have shown.

Efforts to help restore lost connections are surfacing. In 2005, Oregon passed legislation and adopted a procedure to make it easier for relatives to track down people who were institutionalized. A dozen other states are studying its approach.

Last summer, Arc, a national advocacy group for the developmentally disabled, created a registry where people can list who they are trying to find. About 290 families have registered, from nearly every state. But a match can be made only if both sides register. Of the 86 disabled adults who have registered, none have been matched to registered families. Among those searching is a 50-year-old woman who learned only in adulthood about the existence of her developmentally disabled twin sister, says Arc.

 

'Brother Was in Fairview'

One evening in 2005, a television news channel in Portland interviewed a man named Jeff Daly about the discovery of his developmentally disabled sister, Molly, who had been living at Oregon's Fairview home.

Watching TV that night was Jeff West, the youngest sibling of Richard West. Born after Richard left their family home, Jeff West had never met his brother. But he knew all about him, including the name of the first institution Richard had entered. Turning to his wife as they watched that interview, Jeff West said: "My brother was in Fairview."

At the time she became pregnant with their fifth child in 1955, Betty and Tom West lived in a three-bedroom house in The Dalles, Ore. The pregnancy went smoothly, but the delivery didn't. Richard was blue at birth and immediately put on oxygen, then sent home with assurances that he was fine.

He rarely cried. But as months passed, he didn't roll over or crawl. He showed little emotion or recognition. If Mrs. West walked out of the room, he didn't protest. His older brothers played around him. "He seemed like he was in his own little world," recalls his older brother Steve.

Mrs. West read to him and repeated basic words, hoping he would catch on. Once, she thought he said "Mama," but he never said it again. When she started giving him solid food, he choked. At age two, he weighed 17 pounds. "I knew there was something wrong, but I couldn't pinpoint it," she says.

At monthly checkups, she relayed her concerns to her doctor, who said Richard was fine. As months passed without progress, she insisted something was wrong. Tired of her questions, the doctor told her not to come back, she says.

 

Second Opinion

Mrs. West found a new physician who examined Richard and concluded he was severely mentally retarded. The physician explained that Richard might learn to walk but would never talk. He would always have the mentality of a three-year-old and need 24-hour care. "It was a relief knowing it wasn't my imagination" or fault, says Mrs. West.

Soon pregnant again, Mrs. West became overwhelmed at the thought of caring for a newborn and a mentally disabled toddler, along with four older kids. The community offered no programs to help Richard. Having come from North Dakota, the Wests had no family nearby. "I didn't know what to do," says Mrs. West.

She asked her doctor. Gently, he told Mrs. West it would be better for Richard and everyone else if he was institutionalized. "You have to think of the other kids," she remembers the physician telling her.

She was numb. It went against everything the young couple believed. They had built a close family. They had come from close families.

In the end, they felt they had no other option. After Richard received an official diagnosis of "idiot" and "marked mental retardation," the Wests reluctantly agreed to send him 130 miles away to Oregon Fairview Home near Salem. A sprawling complex of dormitories and agricultural operations, Fairview was crowded with a wave of baby boomers with developmental disabilities. At mealtime, nurses lined children in high chairs against the wall, feeding the younger ones and taping forks into the hands of older children to encourage use of utensils.

 

Black-and-White Film

An old black-and-white film called "In Our Care" describes Fairview, showing a porch crowded with children clapping and rolling a ball. "This child spends most of her time tearing paper into shreds," the narrator says.

The day Richard left for Fairview, Mrs. West packed his clothes and dressed him in his best outfit -- a white blazer with a crest on the pocket and dark shorts. She and her husband told the other children Richard was going to a place where he could get special care. "We kind of knew he had a problem that our mother just couldn't take care of," says the oldest, Tom Jr., who was 11 at the time.

At the front office, an administrator recommended that Mr. and Mrs. West kiss Richard goodbye and leave quickly. "It was a terribly difficult day," says Betty West.

To visit Richard, the Wests had to make appointments. They tried to see him at least once in the summer, bringing along the other children. Richard didn't seem to recognize them but held their hands as they played Ring around the Rosie. His younger sister Barbara West remembers the smell of antiseptic and wondering why her older brother slept in a crib when she didn't.

One afternoon, when Richard was about 8 years old, his parents were walking hand-in-hand with him down the sidewalk. An older woman approached and held her hands out. Richard wriggled free and ran into the woman's outstretched arms. He hugged her, showing affection he had never shown his family. Betty remembers crying and telling her husband it was time to let go.

 

'Let Him Be'

"He has someone who loves him here. She makes him happy. We need to let him be," she recalls saying.

They continued to send him clothing but never went back to visit.

"He didn't know us," says Mrs. West.

"That was the only thing that made it bearable," says her husband.

In the West home, Richard became a powerful memory. The youngest child, Jeff, saw various photographs of the brother he'd never met -- Richard on the floor with his older brothers, Richard at the pool with their mother, Richard dressed up the day he went to Fairview. His parents had told Jeff why Richard didn't live at home. "They never shied away from talking about him," says Jeff.

 

No Forwarding Address

None of the children pressed their parents to find out how Richard was doing, although privately they wondered. "Anytime the family was together at Christmas or Thanksgiving, I would think how we used to play around him on the floor," says his older brother Bob.

In the 1980s, the state informed the Wests that Richard was being moved a couple hundred miles east to another state facility. A few years later, the Wests received a letter saying Richard was being placed in a smaller residence. The letter didn't say where. The Wests felt they lacked standing to ask because their son was a ward of the state.

He had, in fact, been transferred to a group home in Baker City, about 300 miles away. There, workers wondered about Richard's family. "Do they know he exists? Do they care?" says caregiver Tracy Hylton. "Many families don't want to have contact, and when there isn't any contact, we have to assume that is the case."

The turning point came the evening that Jeff West saw the television interview with Mr. Daly, the Oregon man who had found his long-lost mentally disabled sister. Suddenly, Jeff West was struck with the desire to find Richard.

Other siblings, however, were apprehensive. "Do you really want to do that?" brother Larry remembers saying. "Are you going to bring up things that are hurtful?"

Debby Peery, the second-youngest, wondered what their responsibility might be and how others would react.

"I was a little nervous about what the caretakers would think of us suddenly showing up after 40 years," she says. "But I was also excited."

All worried about their parents. "I didn't know how much guilt they carried," says Jeff West. At that point, Jeff didn't know his parents had recently and unsuccessfully tried to find Richard so that he could receive Mr. West's pension.

When asked about tracking down his disabled son, the elderly Mr. West responded, "Go for it."

 

40 Years Later

A flurry of phone calls followed. Jeff West talked to Mr. Daly, who gave him phone numbers of agencies with group homes. One was in Baker City. Jeff West provided his parents' Social Security numbers and Richard's date of birth to verify he was family. The woman at the group home said Richard was there.

Weeks later, the family met with Richard for the first time in 40 years. His caregivers, Ms. Hylton and Carrie Baird, drove Richard to the home of a sibling. They worried whether the West family would take Richard away from his group home, where he was comfortable and loved. "It would have been hard for us if he left," says Ms. Hylton.

Likewise, Mr. and Mrs. West felt anxious, not knowing whether Richard would want to see them or be angry. "I didn't know how he would take to us," says Mr. West.

Richard walked in, holding a Sponge Bob Square pants book with buttons that played songs. His parents sat on one couch. He sat on another, next to Ms. Hylton and Ms. Baird, holding their hands. He looked around the room, his face registering no apparent emotion. Mrs. West held back the urge to hold him. "I would have loved to given him a hug," she says. "But they said don't touch him because he won't like it."

 

Dates at McDonald's

Over lunch and through the afternoon, the Wests listened to Ms. Hylton and Ms. Baird describe how Richard loves music, does his own laundry, washes dishes, mows the lawn and sets the table. He has a job refilling ink cartridges. And a girlfriend: On dates to McDonalds they eat apple pie. Always known to his family as Ricky, he now preferred to be called Richard.

The Wests told stories about Richard's younger years and their struggles to help him. Richard grew restless and pressed a button on his book that is his signal to leave. He walked outside and got in the van.

Mr. and Mrs. West thanked Ms. Hylton and Ms. Baird for taking good care of Richard. The Wests say it eased their minds to see Richard healthy and seemingly content.

A few months after visiting Richard, Jeff West received Richard's signed permission to look at his records at Oregon's Department of Human Services office. Going through them helped the family piece together the unknown part of Richard's life. Some was reassuring. Some wasn't.

At Fairview, Richard learned things his parents never thought possible. By 12, he could dress, feed himself, catch a ball, fold pajamas and fish. He had friends and foster grandparents who took him out for ice cream. At 16, Richard taught himself to whistle. He loved Volkswagens and was sometimes found sitting in one in the Fairview parking lot.

Then there were glimpses of what they envisioned institutional life would be like. Over the years, Richard would run away and get in trouble for hitting. He was often put on Thorazine to sedate him.

 

Like Oliver Twist

Most troubling were the annual photographs of him behind a board saying, "Richard Alan West, Case 5727." In the photos, his face is thin and expressionless. The images reminded his parents of orphans begging for gruel in Oliver Twist. "That doesn't look like a very nice life," says Mr. West.

The records also contained references to the times that the Wests visited Richard. The documents said Richard had become visibly upset and withdrawn following their departure -- suggesting that he had known them better than they had realized. "These were things we didn't know," says Mr. West.

Now, Richard receives regular calls, letters, McDonald's gift certificates and visits from his family. Last summer, the family drove four cars to Richard's home. This summer, the Wests are hoping to have Richard home for a family reunion.

Mrs. West sends Richard towels and sweatshirts embroidered with his name. When getting dressed in the morning, Richard selects the same shirts repeatedly -- the ones his mother sent. "He knows it came from his family, and it means something," says Ms. Hylton.

What Happened to Ricky?,
WSJ,
31.5.2008,
http://online.wsj.com/article/SB121218278041833793.html?mod=hpp_us_inside_today

 

 

 

 

 

Obituary

Rosemary Kennedy

The family's dark secret
until her brother, President Kennedy,
acknowledged her

 

Tuesday 11 January 2005
00.03 GMT
The Guardian
Sue Woodman
This article was first published
on guardian.co.uk at 00.03 GMT
on Tuesday 11 January 2005.
It was last updated at 00.03 GMT
on Tuesday 11 January 2005.

 

From early in childhood, it was evident that Rosemary Kennedy, who has died aged 86, had developmental problems. Rosemary - Rose or Rosie to her family - was sister to John F Kennedy, and the third of nine children of the privileged, wealthy Boston family of Joseph and Rose Kennedy.

Rosemary was lobotomised at the age of 23, and spent her adult life in institutional care. Her plight led her younger sister, Eunice Kennedy Shriver, to champion mental health projects, and to found the Special Olympics in 1968 to celebrate the prowess of mentally disabled athletes.

Rosemary had been slow to walk and talk, and had neither the academic nor the athletic skills of her siblings. An IQ test showed mental retardation. But her ambitious father, Joe, kept her condition secret, not just from the public, but from friends and distant family as well. He believed the truth could harm his sons' political aspirations and tarnish his family's shining aura.

The Kennedys had Rosemary schooled at home by governesses and nuns, and allowed her to attend balls and parties if accompanied by her brothers. Diaries from 1936 and 1938 describe the tea parties, dress fittings and social visits that were part of Rosemary's life, as well as her visit to the White House in the era of President Franklin D Roosevelt.

When Rosemary's mood swings and temper became hard to control, the family moved her to a convent. She began to sneak out at night, and the family feared she might come to harm - or get pregnant. Her father was desperate for a solution. It was recommended to him in 1941 that Rosemary have a prefrontal lobotomy, which involved cutting fibres in the brain, an operation intended to calm severely mentally ill patients. This procedure had been performed on perhaps 350-500 people by then, all but one of them older and sicker than Rosemary.

The lobotomy did not help. In fact, it caused Rosemary to regress into a childlike state in which she sat for hours staring at the walls. Her rage stayed unabated. She was then sent to an institution where her father never visited her. And whenever her mother came, Rosemary refused to acknowledge her.

Rosemary was not referred to again in public until 1960, when her brother John became president. A statement from the National Association for Retarded Children revealed that he had "a mentally retarded sister who is in an institution in Wisconsin".

Rosemary lived at the St Coletta School for Exceptional Children in Jefferson, Wisconsin, from 1949 until her death. Her home was a house on the school grounds, which had been specially built for her and two nurses.

Rosemary's most devoted champion was Eunice, who took over her care after their mother's stroke in 1983. Eunice visited Rosemary regularly and brought her home for visits.

Eunice persuaded her father to use the resources of the Joseph P Kennedy Foundation to support causes for the mentally ill. Over the decades, the Kennedy family have funded research and built several facilities. Eunice travelled widely to promote the cause, even conferring with President de Gaulle, who had a retarded child.

A Kennedy family statement, announcing Rosemary's death, called her "a lifelong jewel to every member of our family... From her earliest years, her mental retardation was a continuing inspiration to each of us and a powerful source of our family's commitment to do all we can to help all persons with disabilities live full and productive lives."

Eunice, 83, and Rosemary's other sisters Patricia, 80, and Jean, 76, were with her at her death, as was her surviving brother, Senator Edward Kennedy, 72.

 

· Rosemary Kennedy,

born September 13 1918; died January 7 2005

Rosemary Kennedy,
G,
11.1.2005,
https://www.theguardian.com/news/2005/jan/11/
guardianobituaries.usa 

 

 

 

 

 

 

 

 

 

Related > Anglonautes > Vocapedia

 

mental health / psychology

 

 

war > veterans

 

 

negative feelings

 

 

feelings > stress, fear, shock

 

 

death > suicide