New Help for Hoarders

New Help for Hoarders

By PAULA SPAN

Michael Appleton for The New York TimesNew services and treatments have come along for those who can’t throw things away.

There were times, Sandra Stark remembers, when she couldn’t use her kitchen or sit on her sofa. Her collections — figurines, vases, paperweights — had overtaken every closet, drawer and surface. Stacks of clothing and old magazines added to the clutter.

Her daughters came in and threw everything away — to Ms. Stark’s horror — but a year later her home was again barely navigable. “I couldn’t throw out my garbage,” she said. “I put it in plastic bags, but I couldn’t take it out.”

A drop-in support group sponsored by theMental Health Association of San Franciscohelped her begin to control her hoarding behavior, and she has made considerable headway. “My bedroom is still a work in progress,” said Ms. Stark, 67. “But I can cook again.”

She has become a trained peer responder who works with others with this disorder. Many of the Mental Health Association’s clients are older adults: A woman in her 70s occupies one small room because the rest of her spacious house — leaking and mildewed — is filled with stuff she can’t discard. An 87-year-old, a compulsive thrift-store shopper, faces eviction because the city health department says she has created a safety hazard. “I’ll say, ‘Of these dozen black leather coats, pick two,’” Ms. Stark said, mapping her strategy to help keep the woman in her home.

Researchers are not sure if hoarding intensifies with age, but the problems it creates certainly do. “The older you get, the more stuff you’ve been able to accumulate,” said Randy Frost, co-author of the book “Stuff” and a Smith College psychologist. “And older people are less physically able to deal with it.” They are more prone to falls as they try to maneuver between piles of possessions and in a crisis, emergency crews may have trouble even entering their dwellings.

When I last wrote about hoarding almost three years ago (uncorking a wave of readers’ lamentation), I couldn’t offer much in the way of help except to steer people to the OCD Foundation. Though hoarding may not be a form of obsessive-compulsive disorder, its site remains useful.

At the time, experts knew what didn’t solve the problem, namely psychoactive drugs or “dumpster therapy,” in which well-meaning friends or family toss hoarders’ possessions, in a temporary fix that doesn’t change their behavior. But researchers were only starting to figure out what did work.

“This is an area in which there haven’t been a lot of answers,” said Eduardo Vega, executive director of the Mental Health Association of San Francisco. Now, “there’s a lot more hope and good will.”

Across the country, for example, cities, counties and states have formed about 80 hoarding task forces so that housing and health departments, senior service agencies, law enforcement and emergency units can coordinate their responses.

On the mental health front, the revised Diagnostic and Statistical Manual V is scheduled for publication in the spring, and many expect it will recognize hoarding as a distinct disorder with diagnostic criteria and a numeric code. That will make psychologists and other professionals more aware of the problem and, Mr. Vega said, “it will be easier to get insurers and providers to pay for treatment.”

Increasingly, there is treatment. Researchers have published studies showing that cognitive behavioral therapy can help, by encouraging people to reevaluate their attachment to possessions and supporting their decisions to start discarding.

Among patients in therapy groups, Dr. Frost has shown, 70 to 80 percent showed some improvement, he said. “That doesn’t mean they’re freed of symptoms, but their lives are improved and the behavior significantly reduced.”

Questions remain; several published studies use small samples that are heavily comprised of females, though hoarding may be more common among men. It is not clear, Dr. Frost said, whether cognitive therapy is as effective among older adults. And it is easier to find an individual therapist or a group in major cities than elsewhere. (Here’s a locator.)

But Dr. Frost and his co-authors have published a workbook called “Buried in Treasures,” along with a free facilitator’s guide, that allows people with hoarding disorders to form their own 15-session action workshops, led by peers rather than professionals. That approach, too, has brought measurable improvement (when used in groups, not individually), a study shows. “Here’s a way people can start working on this on their own,” Dr. Frost said.

Diagnostic criteria, treatment centers, workbooks, published research — all this is more than mental health professionals could offer years back. Still, compulsive hoarding remains a stubborn problem, a safety risk for older people and a heartache for their families.

“It’s really difficult for adult children,” who worry about their parents, but can’t induce them to change, Dr. Frost said. “There may be a history of animosity. Many report they grew up feeling their hoarding parents cared more about their possessions than about them.” The children, young or grown, could probably use a support group, too.

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”

Source: http://newoldage.blogs.nytimes.com/2012/11/29/new-help-for-hoarders/?emc=eta1

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Affordable Care Act Fills Need in Mental Health Care

Affordable Care Act Fills Need in Mental Health Care

By FORMER REP. PATRICK KENNEDY and FORMER REP. JIM RAMSTAD | 12/19/12 9:35 PM EST

Like millions of Americans, we have struggled with addiction. Fortunately, we were able to access the treatment and recovery services necessary to get well. But for many people facing addiction or mental health issues without the necessary insurance coverage, such lifesaving services have been out of reach.

The Affordable Care Act changes that. A provision that passed with unanimous support requires that starting in 2014, health insurance plans cover mental health and addiction services as part of the essential benefits.

As a result of these historic changes, approximately 68 million Americans will have access to lifesaving mental health and addiction treatment services. Furthermore, these services, which have been misunderstood and marginalized for so long, will finally be fully integrated as part of a comprehensive approach to health care. That is, if the law is implemented as intended.

The far-reaching impact of this change cannot be overestimated. Research has found that one out of every five Americans will experience some type of mental illness at least once in their lifetime while over 20 million Americans currently need treatment for a problem with alcohol or drugs.

Untreated mental health and substance-use disorders cost American employers an estimated $17 billion annually in absenteeism and lost productivity. Studies have shown that every dollar spent on mental health care results in a savings of $12.

But Americans don’t need a lot of statistics to know that effective programs to address mental health and addiction save lives. Polls show that three in four Americans are concerned that people addicted to alcohol or drugs may not be able to get treatment because of cost or lack of insurance coverage.

While health care reform is designed to address these obstacles, unfortunately, there are many opportunities for this historic achievement to be derailed.

As part of health care reform implementation, every state is required to inform the Department of Health and Human Services of its choice of a benchmark plan, the minimum level of benefits for all insurance plans in the state. The benchmark plans are required to include coverage for mental health and addiction, but as with so many things, the devil will be in the details.

Variation among the states is to be expected — indeed, each state should tailor its plan to meet the needs of its residents. Yet some elements must be standardized for the full potential of this change to be realized.
Many state benchmark plans suffer from a lack of transparency and specificity about benefit coverage. As a result, it is difficult to determine whether certain substance-use and mental health services are covered, consistent with legal requirements. In addition, lifesaving benefits are potentially being excluded in certain states, including residential addiction treatment and certain medication-assisted treatments, an area that has seen tremendous advancements in the past decade.

Recently, the federal government released for comment proposed regulations regarding which services should be considered “essential” and thus required to be covered. Unfortunately, the new rules lack clarity regarding the standard for sufficient coverage for mental health and substance-use services.

The Mental Health Parity and Addictions Equity Act of 2008, which we sponsored and President George W. Bush signed into law, required that insurance coverage for mental health and addiction be equal to coverage of other illnesses. Health care reform set these principles in concrete and extended them. The next few months will be critical to ensuring the principle of parity becomes reality.

As HHS Secretary Kathleen Sebelius and her staff review benchmark plans and craft a final essential health benefits rule, it is vitally important to ensure the states receive sufficient federal guidance to comply with the consumer protections in the law. For true parity to be realized, HHS must ensure that plans cover a sufficient continuum of mental health and addiction-care services and that individuals have good access to that lifesaving care.

Millions of people are hoping the new health care law will make life better — for them and those they love. But there must be clarity and transparency to ensure fairness and effectiveness.

The need for mental health and addiction treatment is urgent; the public support is widespread; and the path forward is within reach. Now is the time for policymakers to ensure the promise of truly integrated, comprehensive care for those facing mental health and addiction issues is finally realized.

Source:http://www.politico.com/story/2012/12/affordable-care-act-fills-need-in-mental-health-care-85316_Page2.html

Memoir Traces How Cartoonist Lost Her ‘Marbles’

Memoir Traces How Cartoonist Lost Her ‘Marbles’

When you think of mental illness, you don't often think of comics; but for cartoonist Ellen Forney, the two came crashing together just before her 30th birthday. That's when she found out she has bipolar disorder, a diagnosis that finally explained her super-charged highs and debilitating lows.

Now that diagnosis is also the subject of Forney's new graphic memoir. It's called Marbles, as in losing one's marbles — a hint that this memoir is both painful and funny. It opens just after a wild trip to a tattoo parlor leads Forney to a psychiatrist. She joins NPR's Renee Montagne to discuss what that psychiatrist told her and how she came to reconcile her illness with her artwork.


Interview Highlights

On learning she was bipolar

“The psychiatrist was the one, after the second visit, who told me that I was bipolar. And I didn't believe it briefly. We went through the symptoms together in the DSM — the Diagnostic and Statistical Manual of Mental Disorders, basically the bible of mental disorders. And we went through the symptoms, one by one, and it sank in. And it was just a very, very strange, strange feeling to see what I had thought of — in particular when I was manic — as super-duper me; exponentially me; very, very, very me. And to see it right there in a book.”

On becoming part of “Club Van Gogh,” a list of writers and artists with depression

“I think that Van Gogh is really the ultimate crazy artist that we all think of. And so there was a certain sense of cred to being part of that [club]. I found that list both encouraging, and I felt like I had company; and at the same time it was terrifying because all of these artists and writers who had done such brilliant work hadn't been medicated, for the most part.”

On the notion that treating her condition might medicate away her creativity

“I find that stability is good for my creativity. There are different artists that I found that feel differently. Poet Anne Sexton was one. It was her opinion that it was the responsibility of artists to feel intense pain so that we could express that for other people who couldn't express it themselves.

“But then, of course, she committed suicide as well. So if you're talking about how creative someone with a mood disorder can be, that really cuts short your creativity and productivity if you cut your own life short.”

On a section of the book that shows her being swept into mania

“On the left side of the page, there's this sense of what stability is about. There's a house and a dock. And then, swooping over onto the right side of the page, is me desperately reaching for the dock, with the rope that had secured me there broken and [me] knowing that I was [being] swept into this depiction that I did of mania, which is this big cloud of mermaids and hearts and stars and swirls and woosh! And I could feel that I was slipping, that I was becoming unmoored, and there was really nothing that I could do to keep that from happening.”

On the book's sense of humor

“It was very important to have humor in the book. For one, it's much easier to take in a difficult story if there's relief. There's a relief in being able to laugh. Like, for instance, in the book there's a scene where, because of my health insurance that didn't cover mental health, I had to go to the cheapest place for my meds that I could find, and that was Costco. And so I would, very depressed, have to drive myself down to this huge, brightly lit, full of enormous tubs of peanut butter and Twizzlers [Costco], and I would go to the pharmacy there. And they did this thing at the time that I hope they don't do anymore, which is, with all of the rest of the people around, they call your name — your full name, 'Ellen Forney' — and to make sure they have the right prescription, they say, 'Lithium.' And so that kind of thing, maybe it wasn't funny at the time — and I would have to say it was not funny at the time — in retrospect, just the absurdity of it [is] very funny.”

  You will be able to listen to the story by going to the website below.

Source:http://www.npr.org/2012/11/26/165655611/memoir-traces-how-cartoonist-lost-her-marbles.

Gandhi: Depression’s Spiritual Transformation

Gandhi: Depression’s Spiritual Transformation

Mohandas Gandhi was one of the principle leaders of India’s movement for independence from the British Empire. Independence was achieved in 1947. He is also recognized as the world’s foremost proponent of non-violent civil disobedience as a force for change, which greatly influenced the civil rights movement in the United States in the 1950s and 1960s.

Gandhi was born in 1869. During his life, he lived through episodes of depression, including a suicide attempt as a teenager. He was also said to be shy and sensitive.

Following India’s independence, he endured his most severe episode of depression.  India faced many tragic problems, including poverty and hunger. These issues weighed heavily on him as the “father of his country.”

Gandhi also felt a sense of personal failure. Independence was achieved at the cost of India being divided along religious lines into two separation nations: India, where the population was predominantly Hindu, and Pakistan, where the population was Muslim. The partition led to bloody riots in many cities between Hindus and Muslims. Gandhi saw it as a rejection of his philosophy of non-violence and collapse of his life’s work.

Gandhi spoke of his depression openly, confounded and frustrated because he lacked patience and “technique” to overcome it.

He once believed he could live to be 125, but told a reporter, “I have lost the hope because of the terrible happenings in the world. I don’t want to live in darkness.” The tone of his speeches, his “voice,” grew less optimistic.

Gandhi’s sense of failure and depression led to deeper reflection over his philosophy of non-violence and his life’s work. In a sense, he revisited choices he had made over the years, struggling with self-doubt. The result was reaffirmation, and to some degree, transformation.

Reflection often is part of cycles of growth in all people, especially those confronted by loss. This includes individuals living with mental illness as part of a process of recovery.

As a lawyer in South Africa, early in his career, Gandhi led opposition to legal discrimination against the Indian minority. It was the period when he first developed his philosophy of non-violent civil disobedience. When he returned to India in 1915, because of his work in South Africa, he became known as “Mahatma,” meaning “Great Soul.”

It was a title Gandhi did not like, until the last year of his life, as part of his transformation. He told a granddaughter: “I am a true Mahatma.”

His outlook included a sense of fatalism. Because of his teachings and work, he always believed he would die at the hands of an assassin, a death he said, he would gladly accept. In 1948, a Hindu extremist shot Gandhi to death, as part of a conspiracy whose members believed he favored Muslims in trying to end India’s violence.

Much of this article, including quotations, is based on the essay “From Mohandas to Mahatma:  The Spiritual Metamorphosis of Gandhi” by Karen E. James in Essays in History, Vol. 28, pp. 5-20  Corcoran Department of History  of the University of Virginia (1984), at http://www.lib.virginia.edu/area-studies/SouthAsia/gandhi.html.

Source: http://www.nami.org/template_eoy.cfm?Section=not_alone&template=/ContentManagement/ContentDisplay.cfm&ContentID=147451

Seeing Things? Hearing Things? Many of Us Do

Seeing Things? Hearing Things? Many of Us Do

HALLUCINATIONS are very startling and frightening: you suddenly see, or hear or smell something — something that is not there. Your immediate, bewildered feeling is, what is going on? Where is this coming from? The hallucination is convincingly real, produced by the same neural pathways as actual perception, and yet no one else seems to see it. And then you are forced to the conclusion that something — something unprecedented — is happening in your own brain or mind. Are you going insane, getting dementia, having a stroke?

In other cultures, hallucinations have been regarded as gifts from the gods or the Muses, but in modern times they seem to carry an ominous significance in the public (and also the medical) mind, as portents of severe mental or neurological disorders. Having hallucinations is a fearful secret for many people — millions of people — never to be mentioned, hardly to be acknowledged to oneself, and yet far from uncommon. The vast majority are benign — and, indeed, in many circumstances, perfectly normal. Most of us have experienced them from time to time, during a fever or with the sensory monotony of a desert or empty road, or sometimes, seemingly, out of the blue.

Many of us, as we lie in bed with closed eyes, awaiting sleep, have so-called hypnagogic hallucinations — geometric patterns, or faces, sometimes landscapes. Such patterns or scenes may be almost too faint to notice, or they may be very elaborate, brilliantly colored and rapidly changing — people used to compare them to slide shows.

At the other end of sleep are hypnopompic hallucinations, seen with open eyes, upon first waking. These may be ordinary (an intensification of color perhaps, or someone calling your name) or terrifying (especially if combined with sleep paralysis) — a vast spider, a pterodactyl above the bed, poised to strike.

Hallucinations (of sight, sound, smell or other sensations) can be associated with migraine or seizures, with fever or delirium. In chronic disease hospitals, nursing homes, and I.C.U.’s, hallucinations are often a result of too many medications and interactions between them, compounded by illness, anxiety and unfamiliar surroundings.

But hallucinations can have a positive and comforting role, too — this is especially true with bereavement hallucinations, seeing the face or hearing the voice of one’s deceased spouse, siblings, parents or child — and may play an important part in the mourning process. Such bereavement hallucinations frequently occur in the first year or two of bereavement, when they are most “needed.”

Working in old-age homes for many years, I have been struck by how many elderly people with impaired hearing are prone to auditory and, even more commonly, musical hallucinations — involuntary music in their minds that seems so real that at first they may think it is a neighbor’s stereo.

People with impaired sight, similarly, may start to have strange, visual hallucinations, sometimes just of patterns but often more elaborate visions of complex scenes or ranks of people in exotic dress. Perhaps 20 percent of those losing their vision or hearing may have such hallucinations.

I was called in to see one patient, Rosalie, a blind lady in her 90s, when she started to have visual hallucinations; the staff psychiatrist was also summoned. Rosalie was concerned that she might be having a stroke or getting Alzheimer’s  or reacting to some medication. But I was able to reassure her that nothing was amiss neurologically. I explained to her that if the visual parts of the brain are deprived of actual input, they are hungry for stimulation and may concoct images of their own. Rosalie was greatly relieved by this, and delighted to know that there was even a name for her condition: “Tell the nurses,” she said, drawing herself up in her chair, “that I have Charles Bonnet syndrome!”

Rosalie asked me how many people had C.B.S., and I told her hundreds of thousands, perhaps, in the United States alone. I told her that many people were afraid to mention their hallucinations. I described a recent study of elderly blind patients in the Netherlands which found that only a quarter of people with C.B.S. mentioned it to their doctors — the others were too afraid or too ashamed. It is only when physicians gently inquire (often avoiding the word “hallucination”) that people feel free to admit seeing things that are not there — despite their blindness.

Rosalie was indignant at this, and said, “You must write about it — tell my story!” I do tell her story, at length, in my book on hallucinations, along with the stories of many others. Most of these people have been reluctant to admit to their hallucinations. Often, when they do, they are misdiagnosed or undiagnosed — told that it’s nothing, or that their condition has no explanation.

Misdiagnosis is especially common if people admit to “hearing voices.” In a famous 1973 study by the Stanford psychologist David Rosenhan, eight “pseudopatients” presented themselves at various hospitals across the country, saying that they “heard voices.” All behaved normally otherwise, but were nonetheless determined to be (and treated as) schizophrenic (apart from one, who was given the diagnosis of “manic-depressive psychosis”). In this and follow-up studies, Professor Rosenhan demonstrated convincingly that auditory hallucinations and schizophrenia were synonymous in the medical mind.

WHILE many people with schizophrenia do hear voices at certain times in their lives, the inverse is not true: most people who hear voices (as much as 10 percent of the population) are not mentally ill. For them, hearing voices is a normal mode of experience.

My patients tell me about their hallucinations because I am open to hearing about them, because they know me and trust that I can usually run down the cause of their hallucinations. For the most part, these experiences are unthreatening and, once accommodated, even mildly diverting.

David Stewart, a Charles Bonnet syndrome patient with whom I corresponded, writes of his hallucinations as being “altogether friendly,” and imagines his eyes saying: “Sorry to have let you down. We recognize that blindness is no fun, so we’ve organized this small syndrome, a sort of coda to your sighted life. It’s not much, but it’s the best we can manage.”

Mr. Stewart has been able to take his hallucinations in good humor, since he knows they are not a sign of mental decline or madness. For too many patients, though, the shame, the secrecy, the stigma, persists.

Oliver Sacks is a professor of neurology at the N.Y.U. School of Medicine and the  author, most recently, of the forthcoming book “Hallucinations.”

By OLIVER SACKS
Published: November 3, 2012
Source: http://www.nytimes.com/2012/11/04/opinion/sunday/seeing-things-hearing-things-many-of-us-do.html?emc=eta1

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Patrick Kennedy: We need a different attitude on mental illness

Former Congressman Patrick Kennedy discusses the stigma surrounding mental health and mental illness.

by CNN
Source: http://www.youtube.com/watch?v=Tukqm_rctyE&feature=em-share_video_user

For Veterans, an Alternative to the Nursing Home

For Veterans, an Alternative to the Nursing Home

Paulia and Bienne Bastia set two dinner tables in their house in Mount Airy, Pa., each night, one for their three children, and another for themselves and the two older men the children call “Grampa.”

The Army veterans Booker Lovett, 79, and Wesley Ottis Furr, 95, are not related to the Bastias or to each other, but this has been their home since late winter. They’re participants in the Department of Veterans Affairs Medical Foster Home program, which places veterans who need round-the-clock care in private homes.

Mr. Lovett, who previously lived with his sister in Philadelphia, had a stroke — he still has trouble speaking — and has glaucoma. Mr. Furr, who maintained his own Philadelphia home, remains talkative and agile despite his age.

The Bastia children, ages 5, 6, and 7, consider the veterans family. Mr. Bastia thinks of them as father figures — he calls each “my king.”

“I felt at home as soon as I come here,” Mr. Furr said.

Mrs. Bastia, 36, a certified nursing assistant, and Mr. Bastia, 45, owner of a tax preparation business, drive the men to appointments, serve meals tailored to their dietary needs and administer medications. The Bastias can communicate with a nurse through a V.A.-provided telehealth monitor equipped with a video camera, blood pressure cuff and other equipment.

On a recent afternoon, Mrs. Bastia fastened the cuff on Mr. Furr’s thin arm while a nurse at the Philadelphia V.A. Medical Center 13 miles away observed. “Thank you, your blood pressure reading has been accepted,” said an automated voice from the monitor.

Medical foster homes provide an alternative to nursing homes for veterans who are unable to live safely and independently at home or lack a strong family caregiver. Conceived in 2000 by V.A. social workers in Little Rock, Ark., the program currently serves 535 veterans; it has cared for 1,468 since it began.

Though the veterans range in age from 23 to 101, their average age is 70. About half have some form of dementia. They often stay until they die, an average of 459 days.

“I know a lot of people suffering,” Mrs. Bastia said, explaining why she decided to participate. “I used to work in nursing homes. I know how it’s like when you get 14, 16 people to take care of. You don’t have time to do what you’re supposed to do. I figure out, if I take them to my house they can get more care.”

Now operating through 73 V.A. sites in 36 states, the medical foster homes program is scheduled to expand to 10 more states within two years. Eventually, the V.A. hopes to introduce the program to all 153 of the agency’s medical centers, said Dan Goedken, national program analyst.

It costs a site about $260,000 a year to introduce the program; each site can serve up to 30 vets. The V.A. finances each place for two years, after which the program is expected to be self-sustaining, said Dr. Thomas Edes, national director of geriatrics and extended care operations at the V.A.

Though medical foster homes are intended to provide better care, not to reduce costs, they operate for half the cost of nursing homes. “It is quite likely that it will save V.A. money and taxpayer money and veterans’ money,” Dr. Edes said.

The Bastias, who met in Florida after emigrating from Haiti, went through months of interviews and background checks to qualify as caregivers. A social worker, a nurse, a dietitian and a fire-safety expert inspected their two-story home on a quiet suburban street, and it will be reinspected annually.

Given the vulnerability of the older veteran population, the V.A. approval process is rigorous. Only one in 10 to 15 applicants are selected. People with no formal training can apply, however, and many with family caregiving experience do. Once a veteran is placed in a home, the V.A. provides training for tasks like cleaning wounds, managing incontinence and safely transporting the new residents.

And it provides periodic respite for caregivers. “It really is 24/7 care,” Mr. Goedken said. “This is a fairly intensive expectation on our part on what they’re going to do. Some willingly back away.”

Veterans pay $1,800 to $3,000 a month for care, depending on their medical needs, often using their combined V.A. and Social Security benefits. Mr. Furr and Mr. Lovett each pay the Bastias $2,000 a month for their shared bedroom and their care. The couple has another room available and is awaiting a third veteran, the maximum allowed.

A national V.A. study measuring veterans’ satisfaction and costs won’t be completed until 2013 and 2015. But 30 percent of veterans who would qualify for V.A.-paid nursing homes choose instead to pay out of pocket for medical foster homes — evidence, Dr. Edes said, that they prefer a home setting.

Even with dementia or mental illness, “they recognize this as their home. It’s very familiar,” he said. “They’re given a lot of autonomy. And it’s very one-on-one attention.”

Mr. Furr and Mr. Lovett get along well in their dorm-style room, with its twin beds and flat screen television. They take turns — Mr. Furr watches the news, while Mr. Lovett prefers football. One is a Democrat and the other a Republican, so they keep political talk to a minimum. Members of Mr. Furr’s congregation drive him to and from his Methodist church twice a week, and he often takes walks. He recently surprised his roommate, who prefers napping and relaxing at home, with a box of Lorna Doone cookies.

“I don’t expect him to be like me, and I can’t be like him,” Mr. Furr said. “So, I accept him as he is and he accepts me as I am. It’s a good deal.”

By ALYSON MARTIN and NUSHIN RASHIDIAN

Source: http://newoldage.blogs.nytimes.com/2012/07/18/for-veterans-an-alternative-to-the-nursing-home/

The Drama of Aging and Caregiving, on YouTube

“I don’t want to take care of them,” Erica confesses in Episode 12 to the man she’s just slept with, speaking about her elderly parents.

“Who does?” The man is the real estate broker who has just sold her parents’ home in San Francisco so that, after a year’s resentful debate, they can downsize.

“People do. Children do,” Erica replies. “They think of it as payback for all the sacrifices their parents made for them. They think it’s a privilege.”

“I don’t know those kinds of people,” he says.

Amy Lippman invented those characters, told them what to say, then directed all 13 episodes of “Ruth & Erica,” a YouTube drama about aging and caregiving. You can find the first one today on the female-centric channel called WIGS, which stands for Where It Gets Interesting.

“I decided to write about something I was experiencing, and all my friends were experiencing — parents who’d been independent and self-sufficient, but were beginning to need more support and guidance,” said Ms. Lippman, who’s in her late 40s. “It seems to have come as a shock to all of us.”

Each slickly produced “Ruth & Erica” episode runs about eight minutes. New ones will appear on Mondays, Wednesdays and Fridays; all 13 will live indefinitely online.

Funny how the number of movies, TV shows and books that focus on aging, and on dementia in particular, keeps growing. “It’s sort of in the ether right now,” said Ms. Lippman, whose own parents recently sold their house — a painful step — in Northern California.

I recently saw “Robot & Frank,” for example. It’s set in “the near future” when, apparently, people have even schmancier phones and zippier minicars and wonderfully helpful caregiving robots, but dementia remains incurable and elder care issues provoke as much family tension as ever.

“Robot & Frank” didn’t climb into my personal Top Five Movies About Aging (since you asked: “Away from Her,” “The Iron Lady,” “The Savages,” “About Schmidt” and “Iris” — what’s your list?), but it had its charms.

“Ruth & Erica,” which unfolds over a year, goes deeper. The veteran actors Lois Smith and Philip Baker Hall give wonderful, wrenching performances as Ruth and Harry Rappaport, who fight their only child’s suggestions of a move to a retirement community as Harry sinks into dementia.

Maura Tierney seems a decade or two too young to be their daughter. Flying in for visits and crisis management, she doesn’t look nearly careworn and frazzled enough. But she’s otherwise a very believable Erica — funny and honest and willing to say aloud what lots of adult children think.

Producing scripted drama for the Web gave Ms. Lippman a shot at something that would have been hard to pull off in movies or television. “It’s an opportunity to tell an intimate, realistic story with absolutely no pyrotechnics,” she said.

In fact, it was so realistic that during production, “almost everyone who worked on the series, including the crew, came up to me and said, ‘My grandmother.’ ‘My parents.’ ‘My sister had to move in with my mother,’” Ms. Lippman said. “I felt this reverberation.”

 

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”

 

Source: http://newoldage.blogs.nytimes.com/2012/09/24/the-drama-of-aging-and-caregiving-on-youtube/?emc=eta1

Foster Care for Elderly: Like a New Home

Foster Care for Elderly: Like a New Home

In the middle of the night, when she gets a hankering for something tasty, Mary Taub slides into her slippers, goes into the kitchen and raids the refrigerator.

If she were in a nursing home, which is where some people thought the 77-year-old woman should go last year when she became too forgetful and scared to live on her own, she would not be able to indulge in the pleasure of a bologna sandwich at midnight.

But in a cozy brick house here surrounded by trees, Mrs. Taub has found privacy, companionship, a hand to help fix her soft white hair, three healthy meals a day and even after-hours snacks, living with a foster family paid to provide her with the amenities of home she can no longer provide for herself. ‘I Want to Stay’

“I like it here, I want to stay here,” said Mrs. Taub, who has been living for the last three months with Cora and Fred Mondonedo and their two daughters, Cathy, 27, and Casandra, 12. “It’s nice to be with a family. They make me laugh.”

Foster care, a system developed to find homes for abandoned and abused children, is growing in the New York region and across the nation as a way to keep elderly people in home settings and communities they know.

As the number of elderly and frail elderly people in the country rises, along with the cost of nursing homes, the government, health policy experts and families are looking for alternatives to both save money and afford older people the greatest freedom in choosing a safe and comfortable place to live.

With monthly costs averaging about $1,000 — one-third those of nursing homes — and the immeasurable value of living within the embrace of a family, supporters say foster care should play an increasingly vital role in caring for the elderly.

Two states that have had extensive experience with foster care for the elderly, Oregon and Washington, have found few drawbacks. So far, cases of abuse have been very limited, people who work in the field said, although they add that as programs proliferate, they will have to be vigilant in looking out for such problems.

The problems that arise most often tend to involve emotional attachments, experts say. When the elderly person becomes too ill to stay in foster care and must move on to a nursing home, the move can be wrenching for all parties.

And the use of foster care can be difficult for relatives of the elderly. They often feel guilty that they are not taking in their aged parent, aunt or grandparent. Sending the elderly to a nursing home, experts say, offers the illusion that a greater level of care is needed, even when it is not.

There are no overall figures on how many older people are living in foster homes since there is no single agency or organization that monitors the dozens of programs nationwide. Experts estimate that tens of thousands of older people of varying ages and conditions are in foster homes and they see those numbers increasing. Responding to a Need

“We started this program as a response to a need we saw,” said Eleanor Frenkel, director of programs for the Bergen County Visiting Homemaker and Home Health Aide Service, which administers a pilot adult foster-care project in northern New Jersey with 27 placements so far.

“We saw people wanting to be cared for at home,” Ms. Frenkel said, “frail elderly not wanting to go into a nursing home but not having a situation that could support care at home either because they had no family or they needed more supervision than they could afford, or they were in substandard homes that were unsafe or unsanitary. But it was very important to them to stay in the community, not in an institution. This is not their original home, but it creates a home where they can be cared for.”

In New York State, Gregory Giuliano, who heads the adult foster-care program in the Office of Housing and Adult Services, said the state had about 800 licensed adult foster-care operators, with 1,600 people in the program. “The important thing is to be creative, to look at many options and to realize that no one alternative is right for everybody,” he said. Less Expensive

Foster care for adults is like foster care for children: a person or a family is paid to take in other people and provide them a home — meals, laundry, a place to sleep, someone to talk to and watch over them. While children are placed in foster care when others decide it is best, the elderly in foster care choose it themselves.

In some programs, the residents pay for the care with their own money, although often a government agency or a nonprofit organization brings the family and the participant together. Mrs. Taub was matched with the Mondonedos through the Family-Type Home Program for Adults, run by Westchester County’s Social Services Department, but she pays the family $950 a month out of her own income, which includes Social Security, dividends and her husband’s pension. Medicaid Waivers

Some elderly people have their foster care paid for with Supplemental Security Income. And in some cases, states have received Medicaid waivers that allow them to spend Federal long-term nursing funds for community-based care programs like adult foster homes.

“It’s a very cost-effective option for the elderly,” said Dr. Susan Sherman, a professor of social welfare at the State University of New York at Albany, who has studied foster care for older people. “And one thing we have found is that it provides as much of a family for care providers sometimes as it does for the residents.”

Taking in Mrs. Taub and Julia Schlegel, a 63-year-old mentally disabled woman, has allowed Mrs. Mondonedo to be home when Casandra gets out of school each day. The Mondonedos first became a foster family for adults when they were living in California and then in Oregon.

“Not everyone can do it — it’s a 24-hour-a-day job,” said Mrs. Mondonedo. “It takes a lot of love, a lot of compassion, a lot of ear to listen to them. But I love elderly people and my daughter needs a grandma. Casandra just loves Mary.”

“Casandra makes me laugh,” said Mrs. Taub, her pale blue eyes crinkling as she giggled.

Regulations and licensing requirments vary with the programs. In New York a foster family can care for up to four adults; in Massachusetts, up to three; in Washington State, up to six, and in Oregon, up to five.

Many people in Oregon and Washington have made a business of adult foster care by buying several houses and hiring families to live in them and care for elderly people. ‘More Humane’

“It is a more humane and human environment than a nursing home for many older people,” said David Olson, coordinator of the adult foster home program in Oregon, which has licensed more than 8,600 adult foster-care beds. “There is independence with supervision but without the feeling of an institution. It’s a home and it quickly does become their home.”

Helen Roethe brought her own chest of drawers, end table, bed and television set when she moved into a foster home in Gladstone, Ore., 13 months ago. She put some prints on the walls and family photos on the dresser top. Then it felt like home.

She is 81, was never married and was living with her sister and brother-in-law in Milwaukie, Ore., but it became too difficult for them to care for her.

“What else was there to do — go live in an institution?” Miss Roethe asked. “Not me. I don’t want it. We care for each other here, like a family. That suits me better.”

Elderly people in foster care, even those with serious medical conditions, do not focus on their health problems, said Thomas Tobin, director of the Family Care Program of Cape Cod Hospital in Hyannis, Mass., which has had an adult foster-care program for 15 years.

“The whole focus is on wellness despite whatever might be wrong with them,” Mr. Tobin said. “Someone in a nursing home is constantly confronted with infirmity and so it becomes a center of their lives.” ‘Very Excellent Break’

Richard Connor spent five years in a nursing home in Wareham, Mass., after a stroke. He was divorced and could no longer live alone, and it was not feasible for him to live with either of his two daughters.

The nursing home was confining and dispiriting, he said, and he considered it “a very excellent break” when he heard a year ago about the adult foster-care program on Cape Cod. He now lives in Yarmouthport with Matthew Keanan, a widowed psychotherapist, and his 18-year-old son, James, a college student.

“Nursing homes of necessity are very restrictive, very crowded,” said Mr. Connor, 68, a retired physicist. “They can’t take you for rides or to the beach. But here with Matthew, I can go out and do things. I can visit Boston for some plays and musicals.”

The transition from the confinement of a nursing home to the freedom of living in a home with a family, Mr. Connor recalled, “was almost shocking.”

“I had to readjust myself to my own way of doing things,” he said. “There was a renewed pleasure in dealing with normal chores: what would I like to eat, or should I bake some bread? In a nursing home you tend to adopt the depression of people around you. In a home, you adopt the atmosphere there, and this is a happy one.”

By ESTHER B. FEIN
Published: March 08, 1994

Source:  http://www.nytimes.com/1994/03/08/nyregion/foster-care-for-elderly-like-a-new-home.html?pagewanted=all&src=pm