THE ELDERLY

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kmaherali
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Doctor prescribes tips for National Family Caregiver’s Month

Slowly, you see it happening to your parents: a jar that does not open, important dates forgotten, missed appointments, the feeling of being lost at times. One day, there is a rapid escalation — a bad fall followed by a slow recovery, or an illness that never leaves. Realisation strikes: you are becoming a parent to your own parents.


November is National Family Caregiver’s Month. Studies indicate that healthy caregivers have a better outlook on life. Photo: Courtesy of iStockPhoto.com

Caring for the elderly is highly revered in Islam, and its importance was frequently underlined during the commemoration of Mawlana Hazar Imam’s Golden Jubilee. In the United States, November is National Family Caregivers Month — an event that pays tribute to over 16 million people in North America who provide care for a loved one. The month recognises those who spend their time and resources to care for their aging parents and other family members who are unable to take care of themselves.

Dr Sultan Ali Lakhani is the Director of Geriatric Psychiatry at Virginia Commonwealth University. He sees approximately 75–100 new cases of dementia, depression, and other mental illnesses each month among his elderly patients. Dr Lakhani, who also supports family caregivers by offering them education and counselling to connect them with resources in the community, shares some tips for caregivers:

Become an educated caregiver

“An educated caregiver is a better caregiver,” advises Dr Lakhani. It is important that those providing care learn as much as they can about the problems that their loved ones are facing in order to provide the best form of assistance. Confer with your loved ones’ health care providers and ask them for suggested reading materials. “If your mother has Alzheimer’s disease, try to learn about the process of the disease and how it will affect her memory, behaviour, and day to day functions in future,” says Dr Lakhani.

Plan for effective care

If it is not managed well, providing care can be overwhelming at times. Dr Lakhani suggests making lists of important activities. “If you are setting up a weekly pill box, do so on the same day of the week each time,” he says. Using online or desk calendars can be beneficial.

Look after your own wellbeing

Maintaining the physical, mental, and emotional wellbeing of the person providing care is essential for effective and quality care giving. Studies indicate that healthy caregivers have a better outlook on life. Pursuing hobbies of interest can make those providing care feel energised and refreshed even if it pulls them away from their duties for a short time. It is also important for caregivers not to postpone their own medical checkups. Above all Dr Lakhani advises steering clear of feeling guilty when things go wrong: “Be gentle and forgiving to yourself if you make a mistake in providing care.”

Cultivate a sense of humour

Laughter is the best medicine. Dr Lakhani urges his patients to find humour in everyday life. “Caregiving is hard work. Allow yourself time to laugh when the road ahead looks bleak,” he advises.

Actively seek support

The US Administration on Aging suggests that caregivers should ask for support if they feel overwhelmed. Develop a support system for yourself by inviting family and close friends to share the load. Actively solicit support even if it means having someone sit in for a few hours. “Also take advantage of community resources that are available out there,” says Dr Lakhani.

http://www.theismaili.org/cms/910/spinner
kmaherali
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February 2, 2010
Op-Ed Columnist
The Geezers’ Crusade
By DAVID BROOKS

We like to think that in days gone by, the young venerated the elderly. But that wasn’t always so. In “As You Like It,” Shakespeare’s morose character, Jaques, calls old age “second childishness and mere oblivion.” Walt Whitman hoped that the tedium and pettiness of his senior years would not infect his poetry.

Developmental psychologists, when they treated old age at all, often regarded it as a period of withdrawal. The elderly slowly separate themselves from the world. They cannot be expected to achieve new transformations. “About the age of fifty,” Freud wrote, “the elasticity of the mental processes on which treatment depends is, as a rule, lacking. Old people are no longer educable.”

Well, that was wrong. Over the past few years, researchers have found that the brain is capable of creating new connections and even new neurons all through life. While some mental processes — like working memory and the ability to quickly solve math problems — clearly deteriorate, others do not. Older people retain their ability to remember emotionally nuanced events. They are able to integrate memories from their left and right hemispheres. Their brains reorganize to help compensate for the effects of aging.

A series of longitudinal studies, begun decades ago, are producing a rosier portrait of life after retirement. These studies don’t portray old age as surrender or even serenity. They portray it as a period of development — and they’re not even talking about über-oldsters jumping out of airplanes.

People are most unhappy in middle age and report being happier as they get older. This could be because as people age they pay less attention to negative emotional stimuli, according to a study by the psychologists Mara Mather, Turhan Canli and others.

Gender roles begin to merge. Many women get more assertive while many men get more emotionally attuned. Personalities often become more vivid as people become more of what they already are. Norma Haan of the University of California, Berkeley, and others conducted a 50-year follow-up of people who had been studied while young and concluded that the subjects had become more outgoing, self-confident and warm with age.

The research paints a comforting picture. And the nicest part is that virtue is rewarded. One of the keys to healthy aging is what George Vaillant of Harvard calls “generativity” — providing for future generations. Seniors who perform service for the young have more positive lives and better marriages than those who don’t. As Vaillant writes in his book “Aging Well,” “Biology flows downhill.” We are naturally inclined to serve those who come after and thrive when performing that role.

The odd thing is that when you turn to political life, we are living in an age of reverse-generativity. Far from serving the young, the old are now taking from them. First, they are taking money. According to Julia Isaacs of the Brookings Institution, the federal government now spends $7 on the elderly for each $1 it spends on children.

Second, they are taking freedom. In 2009, for the first time in American history, every single penny of federal tax revenue went to pay for mandatory spending programs, according to Eugene Steuerle of the Urban Institute. As more money goes to pay off promises made mostly to the old, the young have less control.

Third, they are taking opportunity. For decades, federal spending has hovered around 20 percent of G.D.P. By 2019, it is forecast to be at 25 percent and rising. The higher tax rates implied by that spending will mean less growth and fewer opportunities. Already, pension costs in many states are squeezing education spending.

In the private sphere, in other words, seniors provide wonderful gifts to their grandchildren, loving attention that will linger in young minds, providing support for decades to come. In the public sphere, they take it away.

I used to think that political leaders could avert fiscal suicide. But it’s now clear change will not be led from Washington. On the other hand, over the past couple of years we’ve seen the power of spontaneous social movements: first the movement that formed behind Barack Obama, and now, equally large, the Tea Party movement.

Spontaneous social movements can make the unthinkable thinkable, and they can do it quickly. It now seems clear that the only way the U.S. is going to avoid an economic crisis is if the oldsters take it upon themselves to arise and force change. The young lack the political power. Only the old can lead a generativity revolution — millions of people demanding changes in health care spending and the retirement age to make life better for their grandchildren.

It may seem unrealistic — to expect a generation to organize around the cause of nonselfishness. But in the private sphere, you see it every day. Old people now have the time, the energy and, with the Internet, the tools to organize.

The elderly. They are our future.

http://www.nytimes.com/2010/02/02/opini ... nted=print
kmaherali
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July 28, 2010
Technologies Help Adult Children Monitor Aging Parents
By HILARY STOUT

IN the wee hours of July 14, Elizabeth Roach, a 70-year-old widow, got out of bed and went to the living room of her Virginia ranch home. She sat in her favorite chair for 15 minutes, then returned to bed.

She rose again shortly after 6, went to the kitchen, plugged in the coffee pot, showered and took her weight and blood pressure. Throughout the morning, she moved back and forth between the kitchen and the living room. She opened her medicine cabinet at 12:21 and closed it at 12:22. Immediately afterward, she opened the refrigerator door for almost three minutes. At 1:36, she opened the kitchen door and went outside.

All this information — including her exact weight (126 pounds) and blood pressure reading (139/98) — was transmitted via the Internet to her 44-year-old son, Michael Murdock, who reviewed it from his home office in suburban Denver.

All was normal — meaning all was well.

“Right now she’s not home,” Mr. Murdock said. That he deduced because the sensors he had installed throughout his mother’s home told him that the kitchen door — which leads outside — had not been reopened since 1:36, more than an hour earlier. The opening of the medicine cabinet midday confirmed to him that his mother had taken her medicine. And he was satisfied that she had eaten lunch because the refrigerator door was open more than just a few seconds.

In the general scheme of life, parents are the ones who keep tabs on the children. But now, a raft of new technology is making it possible for adult children to monitor to a stunningly precise degree the daily movements and habits of their aging parents.

The purpose is to provide enough supervision to make it possible for elderly people to stay in their homes rather than move to an assisted-living facility or nursing home — a goal almost universally embraced as both emotionally and financially desirable. With that in mind, a vast spectrum of companies, from giants like General Electric to start-ups like iReminder of Westfield, N.J., which has developed a system to notify families if loved ones haven’t taken their medicine, are looking for a piece of the market of families with an aging relative.

Many of the systems are godsends for families. But, as with any parent-child relationship, all loving intentions can be tempered by issues of control, role-reversal, guilt and a little deception — enough loaded stuff to fill a psychology syllabus. For just as the current population of adults in their 30s and 40s have built a reputation for being a generation of hyper-involved, hovering parents to their own children, they now have the tools to micro-manage their aging mothers and fathers as well.

Wendy A. Rogers, a psychology professor at Georgia Tech, who has studied such systems and seniors’ reactions to them, recalled a man who went into high alert when a sensor system showed a high level of activity in a room of his mother’s home. He called her to find out what was wrong — and it turned out that she had decided to paint the sunroom.

“I think the critical question is: Is this something the parent wants?” said Nancy K. Schlossberg, a counseling psychologist and professor emerita at the University of Maryland. She compared monitoring technology for elderly people to the infamous “nanny cams” — hidden cameras some parents use to spy on their children’s baby sitters. “Big Brother is watching you — there’s something about it that’s very offensive,” she said.

The decision, she said, must ultimately be made by the aging parent. “It has to be negotiated with the parents,” Dr. Schlossberg said. “You want to keep the relationship co-equal. If it’s not an agreement with the parent, it can be a very destructive thing.”

The system Mr. Murdock persuaded his mother to install is called GrandCare, produced by a company of the same name based in West Bend, Wis. It allows families to place movement sensors throughout a house. Information — about when doors were opened, what time a person got into and out of bed, whether there’s been any movement in a room for a certain time period — is sent out via e-mail, text message or voice mail. He said his GrandCare system cost $8,000 to install — about as much as two months at the local assisted-living facility, Mr. Murdock said — plus monthly fees of about $75. The company says that costs vary depending on what features a client chooses.

In addition to giving him peace of mind that his mother is fine, the system helps assuage that midlife sense of guilt. “I have a large amount of guilt,” Mr. Murdock admitted. “I’m really far away. I’m not helping to take care of her, to mow her lawn, to be a good son.”

His mother, Mrs. Roach, was nervous at first when her son brought up the idea of using the system. “I didn’t want to be invaded,” she said. “I didn’t understand the system and was concerned about privacy.” Now that it’s in place, she said, she’s changed her mind: “I was all wrong. I’m not feeling like I’m being watched all day.” And she really enjoys the system’s feature that lets her play games and receive photos and messages from her children and grandchildren. (She never learned to use e-mail.)

Mrs. Roach has no major health issues that require the kind of watching she is getting, and oddly enough, that is the ideal scenario. Elinor Ginzler, senior vice president for livable communities at AARP, said it’s best to discuss using such technology long before a parent’s health has slipped to a point where she might actually need it. “You frame it that way: ‘We’re so happy that things are going so well. We want to make sure to keep it that way. Let’s talk about what we can do to make sure.’ ”

What often follows is pushback. After all, this is not a generation known for its ease with technology.

“My parents’ first reaction to technology is, ’Get it away from me,’ ” said Rachel Meyers, 45, of Brooklyn, whose father, an 80-year-old retired math professor, put at the top of his course syllabus each year: “Do Not E-mail Me.” When her mother, who just turned 84 and lives with her husband in Minneapolis, developed kidney disease, Rachel and her far-flung siblings worried about how to ensure that she was taking the complicated regimen of pills needed daily for her condition.

Their father was not going to be a reliable enforcer. “My father is going to be in his own cave reading a math book with his socks and sandals,” Ms. Meyers laughed. “He is not that guy.”

Through her work as director of community initiatives at the Metropolitan Jewish Health System in Brooklyn, Ms. Meyers learned about a medication management system called MedMinder. It is basically a computerized pillbox. The correct daily dosages of her mother’s 10 different medications are arranged in boxes. When it is time to take them, the pillbox beeps and flashes. If she takes them, Ms. Meyers gets a phone call in Brooklyn saying, essentially, Mom took her pills. Her siblings, including a brother who lives in Australia, get e-mail notifications.

But if her mother doesn’t take the pills within a two-hour window, the system starts nagging. It calls her. It flashes and beeps. Then Ms. Meyers gets a phone call in New York with a message saying her mother missed her dose. “So that’s been interesting,” Ms. Meyers said. “I can call and say, ‘Hey Mom, have you taken your medicine?’ She’ll say, ‘No, I’m on my way.’ I’ll say ‘Do it as a favor for me and take it while we’re on the phone.’ She’ll take it.”

Usually it all works out. But “what does get us into hairy, difficult emotional ground,” Ms. Meyers said, is when her mother’s daily routine changes and her children neglect to reprogram the pillbox to keep up with the shift. For example, as the dialysis began taking a toll, her mother began sleeping later in the morning, but the MedMinder still expected her to take her pills at 7.

“The machine is beeping and she’s not up yet,” Ms. Meyers said. “We get stuck in our own busy lives” and forget to reprogram it. “She says, ’I don’t want it any more.’ Now we’re in a defensive place.”

However, in an interview, Ms. Meyers’s mother, Harriet Meyers, said she had come to appreciate the contraption. “At first I was rebellious. I said, ‘Look, I’m lining up my pills, Rachel.’ I said, ‘I know what I’m doing.’ ” But now she looks at it differently. “I decided to try and now I’m hooked.”

Several academic studies have been undertaken to see just where the line between loving watchfulness and over-intrusion might be drawn. Researchers at Georgia Tech have created an experimental house (called the Aware Home) outfitted with various sensors and motion detectors as well as systems that provide support for medication and memory. They brought in older adults to see how they felt about the devices. “They were quite positive about the idea,” said Ms. Rogers, who is a director of the university’s Human Factors and Aging Laboratory. But the key, she said, is control. The older person is much more amenable if he or she “can control who has access to the information and what information they have access to,” she said.

Other research suggests that having the monitors in place may be enough to give family members peace of mind, and that they are less likely than one might expect to spend time poring over the information. Kelly Caine, a researcher at Indiana University, is just completing a study that found that for all the handwringing over whether to install monitoring technology, the people who received the information from such systems “rarely checked in on the older adults using the monitoring technology more than once per day.” The findings are preliminary, cautioned Ms. Caine, the principal research scientist at the university’s Center for Strategic Health Information Provisioning.

Adult children who call parents to check up on them have learned to be careful about how they phrase their questions. “I personally don’t make it so that I’m watching,” Mr. Murdock said. “I don’t say, ‘Mom, I was looking and you didn’t do this.’ I say, ‘Mom, are you O.K.? I noticed you didn’t take your medicine.’ It’s a balancing act, but it’s an easy conversation. It’s not like I’m calling every day saying, ‘Did you do this or did you do that?’ ”

Other families have also found that the systems reduce the need for nagging conversations. Ray Joss, 91, of Flushing, Queens, has been using a sensor-based system called QuietCare that she found through Selfhelp, a social services company in New York that helps seniors use technology to allow them to live independently. She says that she and her son, who lives in New Jersey, don’t have to dwell on her well-being in conversations because the monitoring system has already let him know how she is. “We talk about other things rather than just how I feel. He doesn’t have to ask me.”

Despite their increasing familiarity with the technology, many elderly people draw the line at cameras.

Susan Oertle has been using a wireless monitoring system called BeClose to check on her aunt, who was recently widowed and had no children of her own. Though the 83-year-old woman recently broke her hip and suffers from a lung condition that compromises her breathing, she is still fiercely independent and likes to stay up till 1:30 a.m. Thanks to wireless sensors in her aunt’s bed, Ms. Oertle can roll over in the middle of the night and notice an e-mail message flashing on her phone reassuring her that her aunt went to sleep. But enough is enough. If there had been cameras to monitor her, Ms. Oertle said, “I think she would have had a bird.”

http://www.nytimes.com/2010/07/29/garde ... &th&emc=th
kmaherali
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Post by kmaherali »

http://columbia.news21.com/2010/

Brave Old World

The demographic projections are startling: In 40 years, the number of Americans past 65 will have doubled.
There’s never been such a graying America.
What’s it like to grow old? How will communities and the nation adapt? A report on how older Americans age, how they grapple with the physical and emotional changes that accompany longer lives, and what lies ahead for us all.

How We Live Now
Welcome to Elderland
Lost and Found
Growing Old in Three Minutes
What We Know About Dementia
Rx for an Aging Nation
kmaherali
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http://www.nytimes.com/2010/12/31/opini ... emc=tha212

December 30, 2010
Real Life Among the Old Old
By SUSAN JACOBY

I RECENTLY turned 65, just ahead of the millions in the baby boom generation who will begin to cross the same symbolically fraught threshold in the new year to a chorus of well-intended assurances that “age is just a number.” But my family album tells a different story. I am descended from a long line of women who lived into their 90s, and their last years suggest that my generation’s vision of an ageless old age bears about as much resemblance to real old age as our earlier idealization of painless childbirth without drugs did to real labor.

In the album is a snapshot of my mother and me, smiling in front of the Rockefeller Center Christmas tree when she was 75 and I was 50. She did seem ageless just 15 years ago. But now, as she prepares to turn 90 next week, she knows there will be no more holiday adventures in her future. Her mind is as acute as ever, but her body has failed. Chronic pain from a variety of age-related illnesses has turned the smallest errand into an excruciating effort.

On the next page is a photograph of my maternal grandmother and me, taken on a riverbank in 1998, a few months short of her 100th birthday. For one sunny afternoon, I had spirited her away from the nursing home where she spent the last three years of her life, largely confined to a wheelchair, with a bright mind — like my mother’s today — trapped in a body that would no longer do her bidding.

“It’s good to be among the living again,” Gran said, in a tone conveying not self-pity but her own realistic assessment that she had lived too long to live well.

Yet people my age and younger still pretend that old age will yield to what has long been our generational credo — that we can transform ourselves endlessly, even undo reality, if only we live right. “Age-defying” is a modifier that figures prominently in advertisements for everything from vitamins and beauty products to services for the most frail among the “old old,” as demographers classify those over 85. You haven’t experienced cognitive dissonance until you receive a brochure encouraging you to spend thousands of dollars a year for long-term care insurance as you prepare to “defy” old age.

“Deny” is the word the hucksters of longevity should be using. Nearly half of the old old — the fastest-growing segment of the over-65 population — will spend some time in a nursing home before they die, as a result of mental or physical disability.

Members of the “forever young” generation — who, unless a social catastrophe intervenes, will live even longer than their parents — prefer to think about aging as a controllable experience. Researchers who were part of a panel discussion titled “90 Is the New 50,” presented at the World Science Festival in 2008, spoke to a middle-aged, standing-room-only audience about imminent medical miracles. The one voice of caution about inflated expectations was that of Robert Butler, the pioneering gerontologist who was the first head of the National Institute on Aging in the 1970s and is generally credited with coining the term “ageism.”

Earlier this year, a few months before his death from leukemia at age 83, I asked Dr. Butler what he thought of the premise that 90 might become the new 50. “I’m a scientist,” he replied, “and a scientist always hopes for the big breakthrough. The trouble with expecting 90 to become the new 50 is it can stop rational discussion — on a societal as well as individual level — about how to make 90 a better 90. This fantasy is a lot like waiting for Prince Charming, in that it doesn’t distinguish between hope and reasonable expectation.”

The crucial nature of this distinction has become foremost in my thinking about what lies ahead.

My hope is that I will not live as long as my mother and grandmother. We all want to be the exceptions: Elliott Carter, an active composer when he walked onto the stage of Carnegie Hall for his centennial tribute in 2008; Betty White, a bravura comedian who wows audiences at 88; John Paul Stevens, the author of brilliant judicial opinions until the day he retired from the Supreme Court at 90. I, too, hope to go on being productive, writing long after the age when most people retire, in the twilight of the print culture that has nourished my life. Yet it is sobering for me — as it is for Americans in many businesses and professions that once seemed a sure thing — to see younger near contemporaries being downsized out of jobs long before they are emotionally or financially ready for retirement.

Furthermore, I am acutely aware — and this is the difference between hope and expectation — that my plans depend, above all, on whether I am lucky enough to retain a working brain. I haven’t mentioned, because I don’t like to think about it, that my paternal grandmother, who also lived into her 90s, died of Alzheimer’s disease. The risk of dementia, of which Alzheimer’s is the leading cause, doubles every five years after 65.

Contrary to what the baby boom generation prefers to believe, there is almost no scientifically reliable evidence that “living right” — whether that means exercising, eating a nutritious diet or continuing to work hard — significantly delays or prevents Alzheimer’s. This was the undeniable and undefiable conclusion in April of a major scientific review sponsored by the National Institutes of Health.

Good health habits and strenuous intellectual effort are beneficial in themselves, but they will not protect us from a silent, genetically influenced disaster that might already be unfolding in our brains. I do not have the slightest interest in those new brain scans or spinal fluid tests that can identify early-stage Alzheimer’s. What is the point of knowing that you’re doomed if there is no effective treatment or cure? As for imminent medical miracles, the most realistic hope is that any breakthrough will benefit the children or grandchildren of my generation, not me.

I would rather share the fate of my maternal forebears — old old age with an intact mind in a ravaged body — than the fate of my other grandmother. But the cosmos is indifferent to my preferences, and it is chilling to think about becoming helpless in a society that affords only the most minimal support for those who can no longer care for themselves. So I must plan, as best I can, for the unthinkable.

I have no children — a much more common phenomenon among boomers than among old people today. The man who was the love of my adult life died several years ago; now I must find someone else I trust to make medical decisions for me if I cannot make them myself. This is a difficult emotional task, and it does not surprise me, for all of the public debate about end-of-life care in recent years, that only 30 percent of Americans have living wills. Even fewer have actually appointed a legal representative, known as a health care proxy, to make life-and-death decisions.

I can see that the “90 is the new 50” crowd might object to my thinking more about worst-case scenarios than best-case ones. But if the best-case scenario emerges and I become one of those exceptional “ageless” old people so lauded by the media, I won’t have a problem. I can also take it if fate hands me a passionate late-in-life love affair, a financial bonanza or the energy to write more books in the next 25 years than I have in the past 25.

What I expect, though — if I do live as long as the other women in my family — is nothing less than an unremitting struggle, ideally laced with moments of grace. On that day by the riverbank — the last time we saw each other — Gran cast a lingering glance over the water and said, “It’s good to know that the beauty of the world will go on without me.”

If I can say that, in full knowledge of my rapidly approaching extinction, I will consider my life a success — even though I will have failed, as everyone ultimately does, to defy old age.

Susan Jacoby is the author, most recently, of the forthcoming “Never Say Die: The Myth and Marketing of the New Old Age.”

http://www.nytimes.com/2010/12/31/opini ... nted=print
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China law to make children visit parents

An elderly man bites into a Beiijng winter snack There are fewer workers supporting more and more elderly people in China

China is considering making it a legal duty for people to visit their aged parents, state media say.

Under a draft legal amendment, elderly people could go to court to claim their right to be physically and mentally looked after by their children.

China is dealing with the problems of a growing elderly population.

Taking care of parents is part of traditional Chinese culture but migration and work pressures have been fracturing family ties, observers say.

An eighth of the population of China is over the age of 60, and more than half of them live alone.

Decades of China's one-child policy have left fewer workers supporting more and more elderly relatives.

And while the number of nursing homes is growing, the authorities were recently alarmed by stories of old people dying unnoticed in their apartments.

The change is a proposed draft amendment to the Law on Protection of the Rights and Interests of the Aged which came into effect in 1996.

A lawyer told state media the proposed new law would be difficult to enforce.

"It would be better to strengthen moral education than to force people to do something legally," Qian Jun said.

China has nearly 167 million people aged over 60 and one million above 80.

http://www.bbc.co.uk/news/world-asia-pacific-12130140
kmaherali
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May 21, 2011
Our Irrational Fear of Forgetting
By MARGARET MORGANROTH GULLETTE

Waltham, Mass.

IN our hypercognitive society, fear of forgetfulness has made deep inroads into the psyche. Misplacing car keys, once considered mere absent-mindedness, is now a clinical symptom. Technological ineptitude in the prime of adulthood is ascribed to memory failure.

The mere whiff of perceived memory loss can have terrible consequences in an insecure economy in which midlife workers are regularly (and illegally) laid off on account of their age. This epidemic of anxiety around memory loss is so strong that many older adults seek help for the kind of day-to-day forgetfulness that once was considered normal.

Greater public awareness of Alzheimer’s, far from reducing the ignorance and stigma around the disease, has increased it. People over 55 dread getting Alzheimer’s more than any other disease, according to a 2010 survey by the MetLife Foundation. The fact that only 1 in 8 Americans older than 65 has Alzheimer’s fails to register.

Is the prospect of the disease so horrifying that it should prompt someone to consider suicide? A writer I know whose mother had Alzheimer’s told me she is stockpiling pills. An academic told me he has found someone who will help him die “before I lose my mind.”

Advocacy groups, manufacturers of so-called anti-aging products and the news media have, for varying reasons, tended to inflate the number of sufferers and the horrors of the condition. Doctors, too, have been complicit: some use “cognitive impairment” as an argument for ending dialysis or other life-sustaining treatments.

And some voices in our culture amplify these alarming sentiments. Tony Kushner links Alzheimer’s to suicide in his new Off Broadway play, “The Intelligent Homosexual’s Guide to Capitalism and Socialism With a Key to the Scriptures.”

His 72-year-old hero, Gus Marcantonio, a retired union organizer, tells his assembled family that he has guessed he has Alzheimer’s, and wants to sell the family house and kill himself over the weekend. Gus has no symptoms that the audience can see except once losing his place in a voluble, earnest and moving speech.

In the Korean director Lee Chang-dong’s film “Poetry,” which won the award for best screenplay at Cannes last year, the graceful and empathetic heroine, who is 66, is given a diagnosis of Alzheimer’s. She too has no symptoms other than once forgetting the word for “bus station.” Yet in the film she jumps off a bridge.

The characters have other motives besides fear to end their lives — guilt, mainly. So why is Alzheimer’s brought into these plots so conspicuously? Perhaps because no other motivation seems as plausible to an audience as a reason to kill oneself.

Despite the prevalence of Alzheimer’s in our national conversation, diagnosing the disease is actually difficult. There is no test that can predict whether forgetting names or words like “bus station” is an indicator of the onset of a degenerative disease. Many older people lose the ability to remember proper nouns but then never progress to losing any other part of speech.

Most forgetfulness is not Alzheimer’s, or dementia, or even necessarily a sign of cognitive impairment. And yet any prophecy about impaired cognition — whether it is fulfilled or not — harms people’s sense of self. They begin to be treated like children, patronized with baby talk or avoided. At the assisted living facility where my mother lived until she died last year at age 96, the nursing director told me that some people think Alzheimer’s is contagious. Victims of misdiagnosis — or, just as devastating, self-diagnosis — dread being shunned, rejected by their offspring, going into debt, becoming a “burden,” losing selfhood.

It needn’t be this way. People with cognitive impairments can live happily with their families for a long time. My mother was troubled by her loss of memories, but she discovered an upside to forgetting. She had forgotten old rancors as well as President George W. Bush’s name. We sang together. She recited her favorite poems and surprised me with new material. We had rich and loving times. Suicide didn’t cross her mind.

The mind is capacious. Much mental and emotional ability can survive mere memory loss, as do other qualities that make us human.

In fact, a revolution in care-giving might be slowly taking root, at least among those aware of alternative narratives of memory loss.

Thomas Kitwood, a British psychologist who was a pioneer in the field of dementia care, died in 1998, but his books, which emphasize personhood instead of debilitation, remain influential. “Making an Exit,” a memoir by Elinor Fuchs, a drama professor at Yale, explored the conversational patterns of her mother when she was in an advanced stage of Alzheimer’s. Anne Basting, director of the Center on Age and Community at the University of Wisconsin, Milwaukee, who wrote a play from poems created by people with Alzheimer’s, has a slogan: “Forget Memory. Try Imagination.”

What a difference it would make if everyone began to share these attitudes. We could make cognition-related fear-mongering shameful and rare, make debates about end-of-life care less searing, improve treatment protocols, reaffirm our collective compact with older people, ease our relationships with people of any age who are cognitively impaired, and enable adults to look forward to getting older with hope instead of despair.

Margaret Morganroth Gullette, a scholar at the Women’s Studies Research Center at Brandeis University, is the author of “Agewise: Fighting the New Ageism in America.”


http://www.nytimes.com/2011/05/22/opini ... emc=tha212
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Post by kmaherali »

His Highness Prince Aga Khan Ismaili Council for Edmonton receives 2011 Minister’s Seniors Service Award

His Highness Prince Aga Khan Ismaili Council for Edmonton – Edmonton
http://www.canadaviews.ca/2011/06/08/vo ... o-seniors/

His Highness Prince Aga Khan Ismaili Council for Edmonton has been serving the Ismaili Muslim community in Edmonton and surrounding areas, Red Deer and Fort McMurray for well over a decade. The organization has many parts that work together to assist the community. The Care for Elderly Ismailis Portfolio is the area that works exclusively on assisting the seniors within this community.

Ismaili Muslim seniors can access drop-in centres, and the seniors benefit program which provides information and assistance with applications. The Council works hard to empower seniors, improve their quality of life and keep seniors engaged in their community.
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July 14, 2011
Death and Budgets
By DAVID BROOKS

I hope you had the chance to read and reread Dudley Clendinen’s splendid essay, “The Good Short Life,” in The Times’s Sunday Review section. Clendinen is dying of amyotrophic lateral sclerosis, or A.L.S. If he uses all the available medical technology, it will leave him, in a few years’ time, “a conscious but motionless, mute, withered, incontinent mummy of my former self.”

Instead of choosing that long, dehumanizing, expensive course, Clendinen has decided to face death as one of life’s “most absorbing thrills and challenges.” He concludes: “When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over. It’s time to be gone.”

Clendinen’s article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do.

But it’s also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death — our willingness to spend our nation into bankruptcy to extend life for a few more sickly months.

The fiscal crisis is driven largely by health care costs. We have the illusion that in spending so much on health care we are radically improving the quality of our lives. We have the illusion that through advances in medical research we are in the process of eradicating deadly diseases. We have the barely suppressed hope that someday all this spending and innovation will produce something close to immortality.

But that’s not actually what we are buying. As Daniel Callahan and Sherwin B. Nuland point out in an essay in The New Republic called “The Quagmire,” our health care spending and innovation are not leading us toward a limitless extension of a good life.

Callahan, a co-founder of the Hastings Center, the bioethics research institution, and Nuland, a retired clinical professor of surgery at Yale, point out that more than a generation after Richard Nixon declared the “War on Cancer” in 1971, we remain far from a cure. Despite recent gains, there is no cure on the horizon for heart disease or stroke. A panel at the National Institutes of Health recently concluded that little progress had been made toward finding ways to delay Alzheimer’s disease.

Years ago, people hoped that science could delay the onset of morbidity. We would live longer, healthier lives and then die quickly. This is not happening. Most of us will still suffer from chronic diseases for years near the end of life, and then die slowly.

S. Jay Olshansky, one of the leading experts on aging, argues that life expectancy is now leveling off. “We have arrived at a moment,” Callahan and Nuland conclude, “where we are making little headway in defeating various kinds of diseases. Instead, our main achievements today consist of devising ways to marginally extend the lives of the very sick.”

Others disagree with this pessimistic view of medical progress. But that phrase, “marginally extend the lives of the very sick,” should ring in the ears. Many of our budget problems spring from our quest to do that.

The fiscal implications are all around. A large share of our health care spending is devoted to ill patients in the last phases of life. This sort of spending is growing fast. Americans spent $91 billion caring for Alzheimer’s patients in 2005. By 2015, according to Callahan and Nuland, the cost of Alzheimer’s will rise to $189 billion and by 2050 it is projected to rise to $1 trillion annually — double what Medicare costs right now.

Obviously, we are never going to cut off Alzheimer’s patients and leave them out on a hillside. We are never coercively going to give up on the old and ailing. But it is hard to see us reducing health care inflation seriously unless people and their families are willing to do what Clendinen is doing — confront death and their obligations to the living.

There are many ways to think about the finitude of life. For years, Callahan has been writing about the social solidarity model — in which death is accepted as a normal part of the human condition and caring is emphasized as much as curing.

In the online version of this column let me provide links to three other essays, which offer other perspectives on why we should accept the finitude of life and the naturalness of death. They are: “Born Toward Dying,” by Richard John Neuhaus, “L’Chaim and Its Limits: Why Not Immortality?” by Leon Kass and “Thinking About Aging,” by Gilbert Meilaender.

My only point today is that we think the budget mess is a squabble between partisans in Washington. But in large measure it’s about our inability to face death and our willingness as a nation to spend whatever it takes to push it just slightly over the horizon.

http://www.nytimes.com/2011/07/15/opini ... emc=tha212
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August 25, 2012
How Long Do You Want to Live?
By DAVID EWING DUNCAN

SINCE 1900, the life expectancy of Americans has jumped to just shy of 80 from 47 years. This surge comes mostly from improved hygiene and nutrition, but also from new discoveries and interventions: everything from antibiotics and heart bypass surgery to cancer drugs that target and neutralize the impact of specific genetic mutations.

Now scientists studying the intricacies of DNA and other molecular bio-dynamics may be poised to offer even more dramatic boosts to longevity. This comes not from setting out explicitly to conquer aging, which remains controversial in mainstream science, but from researchers developing new drugs and therapies for such maladies of growing old as heart disease and diabetes.

“Aging is the major risk factor for most diseases,” says Felipe Sierra, director of the Division of Aging Biology at the National Institute on Aging. “The National Institutes of Health fund research into understanding the diseases of aging, not life extension, though this could be a side effect.”

How many years might be added to a life? A few longevity enthusiasts suggest a possible increase of decades. Most others believe in more modest gains. And when will they come? Are we a decade away? Twenty years? Fifty years?

Even without a new high-tech “fix” for aging, the United Nations estimates that life expectancy over the next century will approach 100 years for women in the developed world and over 90 years for women in the developing world. (Men lag behind by three or four years.)

Whatever actually happens, this seems like a good time to ask a very basic question: How long do you want to live?

Over the past three years I have posed this query to nearly 30,000 people at the start of talks and lectures on future trends in bioscience, taking an informal poll as a show of hands. To make it easier to tabulate responses I provided four possible answers: 80 years, currently the average life span in the West; 120 years, close to the maximum anyone has lived; 150 years, which would require a biotech breakthrough; and forever, which rejects the idea that life span has to have any limit at all.

I made it clear that participants should not assume that science will come up with dramatic new anti-aging technologies, though people were free to imagine that breakthroughs might occur — or not.

The results: some 60 percent opted for a life span of 80 years. Another 30 percent chose 120 years, and almost 10 percent chose 150 years. Less than 1 percent embraced the idea that people might avoid death altogether.

These percentages have held up as I’ve spoken to people from many walks of life in libraries and bookstores; teenagers in high schools; physicians in medical centers; and investors and entrepreneurs at business conferences. I’ve popped the question at meetings of futurists and techno-optimists and gotten perhaps a doubling of people who want to live to 150 — less than I would have thought for these groups.

Rarely, however, does anyone want to live forever, although abolishing disease and death from biological causes is a fervent hope for a small scattering of would-be immortals.

In my talks, I go on to describe some highlights of cutting-edge biomedical research that might influence human life span.

For instance, right now drug companies are running clinical trials on new compounds that may have the “side effect” of extending life span. These include a drug at Sirtris, part of GlaxoSmithKline, that is being developed to treat inflammation and other diseases of aging. Called SRT-2104, this compound works on an enzyme called SIRT1 that, when activated, seems to slow aging in mice and other animals. It may do the same thing in humans, though this remains to be proven.

“Many serious attempts are being made to come up with a pill for aging,” said Dr. Sierra, though he suspects that there will not be a single anti-aging pill, if these compounds end up working at all. “It will be a combination of things.”

For over a decade, scientists also have experimented with using stem cells — master cells that can grow into different specialized cells — to replace and repair tissue in the heart, liver and other organs in animals. Some researchers have succeeded in also using them in people. The researchers include the urologist Anthony Atala of Wake Forest Baptist Medical Center, who has grown human bladders and urethras from stem cells that have been successfully transplanted into patients.

But another stem cell pioneer, James Thomson of the University of Wisconsin, believes that stem cell solutions will be a long time coming for more complex organs. “We’re a long way from transplanting cells into a human brain or nervous system,” he said.

ANOTHER intervention that might thwart the impact of aging is bionics: the augmentation or replacement of biological functions with machines. For years cardiac pacemakers have saved and extended the lives of millions of people. More recent devices and machine-tooled solutions have restored hearing to thousands who are deaf and replaced damaged knees and hips. Physicians use brain implants to help control tremors brought on by Parkinson’s disease. Researchers also are working on a wide range of other machine fixes, from exoskeletons that protect joints to experimental devices that tap into the brain activity of paralyzed patients, allowing them to operate computers using thought.

Curiously, after learning about these possibilities, few people wanted to change their votes. Even if I asked them to imagine that a pill had been invented to slow aging down by one-half, allowing a person who is, say, 60 years old to have the body of a 30-year-old, only about 10 percent of audiences switched to favoring a life span of 150 years.

Overwhelmingly the reason given was that people didn’t want to be old and infirm any longer than they had to be, even if a pill allowed them to delay this inevitability.

Others were concerned about a range of issues both personal and societal that might result from extending the life spans of millions of people in a short time. These included everything from boredom and the cost of paying for a longer life to the impact of so many extra people on planetary resources and on the environment. Some worried that millions of healthy centenarians still working and calling the shots in society would leave our grandchildren and great-grandchildren without the jobs and opportunities that have traditionally come about with the passing of generations.

Long-lifers countered that extending healthy lives would delay suffering, possibly for a very long time. This would allow people to accomplish more in life and to try new things. It would also mean that geniuses like Steve Jobs or Albert Einstein might still be alive. Einstein, were he alive today, would be 133 years old.

That’s assuming that he would want to live that long. As he lay dying of an abdominal aortic aneurysm in 1955, he refused surgery, saying: “It is tasteless to prolong life artificially. I have done my share, it is time to go. I will do it elegantly.”

David Ewing Duncan is a contributor to Science Times. This essay is adapted from his most recent e-book, “When I’m 164: The New Science of Radical Life Extension and What Happens If It Succeeds.”

http://www.nytimes.com/2012/08/26/sunda ... h_20120826
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December 13, 2012
Life Expectancy Rises Around the World, Study Finds
By SABRINA TAVERNISE

A sharp decline in deaths from malnutrition and infectious diseases like measles and tuberculosis has caused a shift in global mortality patterns over the past 20 years, according to a report published on Thursday, with far more of the world’s population now living into old age and dying from diseases mostly associated with rich countries, like cancer and heart disease.

The shift reflects improvements in sanitation, medical services and access to food throughout the developing world, as well as the success of broad public health efforts like vaccine programs. The results are striking: infant mortality declined by more than half from 1990 to 2010, and malnutrition, the No. 1 risk factor for death and years of life lost in 1990, has fallen to No. 8.

At the same time, chronic diseases like cancer now account for about two out of every three deaths worldwide, up from just over half in 1990. Eight million people died of cancer in 2010, 38 percent more than in 1990. Diabetes claimed 1.3 million lives in 2010, double the number in 1990.

“The growth of these rich-country diseases, like heart disease, stroke, cancer and diabetes, is in a strange way good news,” said Ezekiel Emanuel, chairman of the department of medical ethics and health policy at the University of Pennsylvania. “It shows that many parts of the globe have largely overcome infectious and communicable diseases as a pervasive threat, and that people on average are living longer.”

In 2010, 43 percent of deaths in the world occurred at age 70 and older, compared with 33 percent of deaths in 1990, the report said. And fewer child deaths have brought up the mean age of death, which in Brazil and Paraguay jumped to 63 in 2010, up from 30 in 1970, the report said. The measure, an average of all deaths in a given year, is different from life expectancy, and is lower when large numbers of children die.

But while developing countries made big strides the United States stagnated. American women registered the smallest gains in life expectancy of all high-income countries’ female populations between 1990 and 2010. American women gained just under two years of life, compared with women in Cyprus, who lived 2.3 years longer and Canadian women who gained 2.4 years. The slow increase caused American women to fall to 36th place in the report’s global ranking of life expectancy, down from 22nd in 1990. Life expectancy for American women was 80.5 in 2010, up from 78.6 in 1990.

“It’s alarming just how little progress there has been for women in the United States,” said Christopher Murray, director of the Institute for Health Metrics and Evaluation, a health research organization financed by the Bill and Melinda Gates Foundation at the University of Washington that coordinated the report. Rising rates of obesity among American women and the legacy of smoking, a habit women formed later than men, are among the factors contributing to the stagnation, he said. American men gained in life expectancy, to 75.9 years from 71.7 in 1990.

Health experts from more than 300 institutions contributed to the report, which provided estimates of disease and mortality for populations in more than 180 countries. It was published in The Lancet, a British medical journal.

The World Health Organization issued a statement on Thursday saying that some of the estimates in the report differed substantially from those done by United Nations agencies, though others were similar. All comprehensive estimates of global mortality rely heavily on statistical modeling because only 34 countries — representing about 15 percent of the world’s population — produce quality cause-of-death data.

Sub-Saharan Africa was an exception to the trend. Infectious diseases, childhood illnesses and maternity-related causes of death still account for about 70 percent of the region’s disease burden, a measure of years of life lost due to premature death and to time lived in less than full health. In contrast, they account for just one-third in South Asia, and less than a fifth in all other regions. Sub-Saharan Africa also lagged in mortality gains, with the average age of death rising by fewer than 10 years from 1970 to 2010, compared with a more than 25-year increase in Latin America, Asia and North Africa.

Globally, AIDS was an exception to the shift of deaths from infectious to noncommunicable diseases. The epidemic is believed to have peaked, but still results in 1.5 million deaths each year.

Over all, the change means people are living longer, but it also raises troubling questions. Behavior affects people’s risks of developing cancer, heart disease and diabetes, and public health experts say it is far harder to get people to change their ways than to administer a vaccine that protects children from an infectious disease like measles.

“Adult mortality is a much harder task for the public health systems in the world,” said Colin Mathers, a senior scientist at the World Health Organization.

Tobacco use is a rising threat, especially in developing countries, and is responsible for almost six million deaths a year globally. Illnesses like diabetes are also spreading fast.

Donald G. McNeil Jr. contributed reporting.

http://www.nytimes.com/2012/12/14/healt ... h_20121214
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Why Elders Smile

Interesting article about how elders can contribute positively to society, of course provided they are healthy.

"It’s comforting to know that, for many, life gets happier with age. But it’s more useful to know how individuals get better at doing the things they do. The point of culture is to spread that wisdom from old to young; to put that thousand-year-heart in a still young body."

More...

http://www.nytimes.com/2014/12/05/opini ... 05309&_r=0
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As We Age, Keys to Remembering Where the Keys Are

I recently told my 70s-something walking group that I wanted to write about “retrieval disorder,” our shared problem with remembering names and dates, what we had just read and where, even what we had for dinner last night. Or, in my case, the subject of the column I wrote the day before.

One walking buddy suggested I call it delayed retrieval disorder. “It’s not that we can’t remember,” she said. “It just takes us longer, sometimes a lot longer, than it used to.” Then she wondered, “Is it really a disorder? Since it seems to happen to all of us, isn’t this just normal aging?”

Indeed it is, I’ve learned from recent reports, including one released last month by the Institute of Medicine. And it doesn’t mean we’re all headed down the road to dementia, although unchecked, cognitive changes with age can make it increasingly difficult to meet the demands of daily life, like shopping, driving, cooking and socializing.

I am painfully aware of increasingly frequent memory lapses, like where I left my cellphone or glasses. I searched the house the other day for a container of ice cream, only to finally find it in the microwave, where I had planned to soften it. Without a shopping list, I inevitably return from the store without something I really needed. And without a hide-a-key, I would routinely lock myself out of the house.

I was a terrific speller and walking thesaurus most of my life, but now routinely resort to an online dictionary and my computer’s ability to second-guess the word I’m trying to spell.

Although memory issues become more apparent in the Medicare years, gradual changes in cognitive function actually begin decades earlier, their effects usually masked by the brain’s excess of neurons and ability to lay down new connections throughout life.

AARP reassuringly writes in its Staying Sharp booklets, “As brain functions go, forgetting may be almost as important as remembering; it would be inefficient for our brains to try to retain every bit of information we’re exposed to throughout life.”

About a third of healthy older people have difficulty remembering facts, people, places and other things encountered daily, “yet a substantial number of 80-year-olds perform as well as people in their 30s on difficult memory tests,” AARP noted.

Nor are those who do less well cognitively suffering from a brain disease. “Just as you wouldn’t say that a marathon runner who slows down in his 80s has a motor disease, age-related cognitive decline isn’t necessarily pathological,” said Molly V. Wagster, chief of neurosciences at the National Institute on Aging. “We may just be slower to retrieve information, and slower to learn new things.”

Besides, Dr. Wagster told me, “the older brain retains plasticity; it’s capable of making adaptive changes. Certain regions of the brain operate in slightly different ways that may actually be better than at young ages.” Some of the changes, like depth of comprehension and wisdom gleaned through experience, are improvements that can compensate for less positive age-related effects, she said.

Denise C. Park, a psychologist at the University of Texas at Dallas, reports that while the brain’s “processing capacity” declines rather steadily from the 20s onward, “world knowledge,” including vocabulary, increases, at least into the 70s, when it seems to plateau. Still, it is important for people to recognize possibly pathological symptoms of cognitive impairment, like getting lost driving to a familiar place, having difficulty with finances, or failing to take medications correctly — deficits that warrant medical attention, Dr. Wagster said.

As AARP put it, “forgetting where you parked your car can happen to everyone occasionally, but forgetting what your car looks like may be cause for concern.”

Preventing cognitive decline that can interfere with quality of life is a far better option than trying to reverse it. The Institute of Medicine highlighted several actions everyone can take to maximize the chances of remaining cognitively sound well into the twilight years.

First and foremost, “be physically active.” Numerous studies have documented benefits to the brain as well as the body from regular exercise. For example, among 18,766 women ages 70 to 81 participating in the Nurses’ Health Study, those with the highest level of activity had a 20 percent lower risk of cognitive impairment than those who were least active.

Second, prevent or control cardiovascular risk factors, including high blood pressure, smoking, obesity and diabetes. What is good for the heart also appears to be good for the brain. A diet relatively low in fat, cholesterol and sugar and replete in antioxidant-rich vegetables and fish are likely to be protective, as are adequate levels of vitamin D.

Drink alcohol moderately, defined as one drink a day for women, two for men, or not at all. And get adequate sleep — a good seven hours a night — to keep neurons firing at top speed. Depression has a negative effect on cognition at all ages; if you suffer from it, get it treated.

Be well educated. Even if you missed out on a good education early in life, it is not too late to engage in intellectually stimulating activities, including taking courses online or at a local college, reading books, participating in discussion groups, and attending lectures and other cultural activities.

Dr. Park maintains that “cognitive engagement” — learning complex new tasks like quilting, crocheting or digital photography — can improve cognitive performance. But Dr. Wagster emphasized that cognitively stimulating activities should also be personally rewarding or meaningful, not frustrating or just busy work.

“Learning a new language can be very difficult later in life unless one has a compelling reason to do so,” Dr. Wagster said.

Finally, none of these measures may be helpful if they prevent you from being involved socially in leisure or volunteer activities. Social interaction is a strong predictor of healthy aging.

For further reliable information on how to minimize cognitive decline with age, I highly recommend a forthcoming book, “Staying Sharp: 9 Keys for a Youthful Brain Through Modern Science and Ageless Wisdom,” by Henry Emmons and David Alter.

This is the first of three articles on cognitive changes with age.

http://well.blogs.nytimes.com/2015/05/0 ... pe=article
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Medicare’s Next Half-Century

The 50th anniversary of Medicare next month is an opportunity to consider what the goals of medicine should be in our aging society and how we want to live in relation to medicine’s evolving tools.

http://opinionator.blogs.nytimes.com/20 ... d=45305309
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Experts on Aging, Dying as They Lived

At 10 years old I knew my parents did not wish to be resuscitated nor plugged into machines in the event of serious illness. They told me they were not afraid of death but rather of being kept alive at any cost. I knew they would refuse medical interventions, if they felt there was no purpose except to separate the dying from their deaths. They were wary of doctors who my parents said were trained by a medical culture that had lost touch with what should be its major focus: ending suffering.

My father, Robert N. Butler, was a physician, a psychiatrist and a Pulitzer Prize-winning author who pioneered the field of aging. My mother, Myrna Lewis, had a Ph.D. in social work; her specialty was older women. Together they co-wrote books on aging, mental health, sexuality and public policy. They would have been tickled by the coverage a few months ago of the Iowa state representative Ross Paustian, a Republican, nose-deep in their book “Sex After Sixty” in the middle of a House debate over the collective bargaining rights of teachers.

My parents applied what they learned out in the field to their personal lives. They worked hard to put as much money toward their retirement and old age as they could so that my half-sisters and I would never be financially responsible for them. They told us where we could find copies of their wills and health directives, explaining that these documents clarified their wishes and we would not have to bear the full weight of making end-of-life decisions for them.



As a teenager I hated these discussions. I probably told them to stop torturing me and to stop being so morbid. They were reassuring me about scenarios that I did not want to think about. I could not have known how grateful I would be now.

My parents were prepared, but that is not the same as being ready. Few are ever ready to face the end of life, and often how we imagine living our last days is not the way we do. I was born to older parents: My father was 53, my mother 42.

By the time I was in my early 20s, they were in their late 60s and early 70s.

I began to fear that we would have to pull my father kicking and screaming from his professional life. I knew he would work until the last possible moment because work was his passion. I dreaded the day when physically or mentally he would be stopped from doing what he loved. My mom began to speak about her fear of losing him and the fact that she would have to face her own old age without him at her side. This was around 2003, the summer my mother started walking into walls.

She was angry with herself for her sudden clumsiness. Then one day she lost $400, which she had withdrawn from the bank moments before. On her way home she was almost run over in the street. The driver was so angry he stepped from his car to yell at her.

At home in our living room, little voices drifted through the window from a nearby playground and my mother sat staring at the wall. She seemed upset but said she was just tired. The next morning she phoned me crying from her doctor’s office. She was given a diagnosis of terminal brain cancer and told she might have only three months.

My parents had assumed my father would die first and had prepared for my mother’s widowhood. Now neither of them was able to comprehend or accept her diagnosis. They used a baseball metaphor that my mom came up with. She could run from base to base, she thought, until science had caught up with her disease.

Both of my parents knew from their clinical work the agonizing loss of self that can come with illness. And yet the true insanity of that is something you can never grasp until it is upon you. My mother was unable to do a single thing that truly mattered to her other than survive. She spent the last months of her life trying not so much to live as to get back to a mind that could process its own death. And then she was gone.

My father seemed to age 10 years almost overnight. He knew it. He spoke about what he was doing every day to stay in shape and engaged with life despite his grief. He followed the advice he would have given to his patients. He made sure he exercised. He made sure that he ate. He forced himself to see friends even when he was not up to it. He spoke about the fact that older men who lose their partners have high rates of mortality in the first year. He had clung to work during my mother’s illness, unable to fully face her grief and his own. Now his focus shifted to his daughters and his family. He was changed for the better after losing her. All of his relationships deepened.

To some extent, each of my parents lived out the scenario they had imagined for the other; nevertheless, their preparation had been worth it.

Five years after my mother’s death, my dad died of leukemia. He suffered something called a blast crisis, during which the body attacks its healthy cells, causing agonizing pain. But his doctor followed the plan they had formed together and he died peacefully without extraordinary interventions. He was in comfort and surrounded by his family.

I have a friend who is haunted by the way her parents died. Her family did not know how to discuss or plan for death. They thought any planning would be morbid. They were unfamiliar with palliative care and associated it with giving up hope.

But palliative care, simply stated, is the treatment of the physical and emotional pain that come with illness. It is a system of care that supports both patient and family. And in certain cases it can extend life.

To the small extent that we have any choice in this uncertain life, it is wise to face your own death. In a world where so many of our fellow human beings live with threats of terror and destruction, if you are lucky enough to imagine you might have any measure of control over how you die, that is a privilege that should not go to waste.

Our deaths are the last message we leave for those we love. How my parents died — in comfort — was the way they cared for me after they were gone. I was not ready to lose them in my 20s, but they had prepared and so I was protected.

Their legacy to me was not a given. The illnesses that took them were outcomes that our past selves would have labeled catastrophic, worst-case scenarios. And yet for me these worst-case scenarios, though painful memories, are dwarfed by a much larger story: how my parents lived, how they died and how gracefully they did them both.

http://opinionator.blogs.nytimes.com/20 ... 05309&_r=0
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How to Talk About Dying

I was 25 when I flew home for my father’s last birthday. His cancer had returned and he would die three months later at the age of 57. What I remember most about that weekend was the large rectangular gift box he opened. My mother had bought him a new suitcase.

Photo

Credit Getty Images
I don’t know if that suitcase qualifies my family for the Denial Hall of Fame. There are so many contenders for that honor. But I’ve carried the psychic baggage over the years. I have never forgotten that image and how we lost a chance to say goodbye. I still wonder if my father was lonely in the silence that surrounded our inability to talk about what we all knew.

Decades later my mother began a long slow decline. By then, I was a newspaper columnist, a job that I often described as “telling people what you think.” I was professionally outspoken. But little had changed since my father’s death.

Yes, my mother and I talked about everything — but we didn’t talk about how she wanted to live toward the end. The closest we ever came to discussing her wishes was when she would see someone in dire straits and say, “If I’m ever like that, pull the plug.” But most of the time there is no plug to pull.

Gradually and painfully, my mother lost what the doctors call “executive function,” as if she were a C.E.O. fumbling with Excel spreadsheets, not a 92-year-old who couldn’t turn on the television or make a phone call. Eventually, she couldn’t decide what she wanted for lunch, let alone for medical care.

In some recess of my mind, I still assumed that death came in the way we used to think of as “natural.” I thought that doctors were the ones who would tell us what needed to be done. I was strangely unprepared, blindsided by the cascading number of decisions that fell to me in her last years.

I had to say no to one procedure and yes to another, no to the bone marrow test, yes and yes again to antibiotics. How often I wished I could hear her voice in my ear telling me what she wanted. And what she didn’t want.

When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened.

Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.

The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.

So, a small group of us — each with his or her own story — started the Conversation Project, a nonprofit, out of the belief that surely we could make this easier. Our partners at the Institute for Healthcare Improvement gathered experts frustrated at the pace of change who believed that the health care system wouldn’t change until the culture changed. So we are trying to change the culture.

There is now, finally, a real momentum for improving end-of-life care. The signs range from the Institute of Medicine’s report, “Dying in America,” to the success of Atul Gawande’s book “Being Mortal.”

There is also a growing public awareness of the need to break through the reluctance that has kept us tongue-tied for so long. A survey we did last year showed that 90 percent of Americans now think it’s important to have the conversation. But the same survey showed something else: Only 30 percent of us have actually had these conversations. So the gap remains huge.

We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.

In our survey, the primary reason people gave for not talking to their loved ones was “It’s too soon.” But it’s always too soon … until it’s too late. Half of all elderly people in hospitals cannot make decisions for themselves at the end of life. Far too many health care providers are uncomfortable and untrained in these conversations.

From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a Conversation Starter Kit, which deliberately avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living.

Our starter kit asks what matters to you, not what’s the matter with you. It asks what’s most important to you in the last phase of your life? Who do you want to make decisions for you? Where do you want to be? Do you worry that you won’t get enough care? Do you worry that you’ll get overly aggressive care?

About two-thirds of the nearly 300,000 people who have come to our website download the starter kit, which is free. We’ve been told repeatedly that conversations that had loomed as frightening and overwhelming repeatedly turned into the most intimate and rewarding moments.

Is it important to have the health care system ready to respect and record our wishes, to have health care providers become more comfortable beginning these talks? Of course. But the hard truth is that we have to begin ourselves — by thinking about our own values, by sharing them, by bringing our own beliefs into the center of the room when decisions will be made.

In my own adulthood, the culture of birth changed. It wasn’t doctors who first tossed out the stirrups and ushered in fathers and video cameras and “birthing rooms.” It was parents who said, birth is not just a medical experience, it’s a human experience. Now we are finally saying that dying, too, is not just a medical experience, it is also a deeply human experience.

Last winter we held a national dinner party to break bread and taboos, to eat comfort food and talk about dying. I shared the table with Nancy Frates, who is known for starting the A.L.S. ice bucket challenge to honor her son Pete. “Now I understand,” she told me. “The conversation is a gift to your family.”

When I helped found the Conversation Project, I thought we were doing this for people who were dying. I thought of my parents. I thought of “executive function” and “baggage.” What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another.

Ellen Goodman, formerly a syndicated columnist for The Boston Globe, is a founder of the Conversation Project.

http://opinionator.blogs.nytimes.com/20 ... type=Blogs

******
Fixes Oct 27 3:30 amOct 27 3:30 am34

Talking Early About How Life Should End

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Last edited by kmaherali on Wed Oct 28, 2015 1:29 am, edited 1 time in total.
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Post by kmaherali »

kmaherali
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Post by kmaherali »

Aid-in-Dying Laws Are Just a Start

One co­ld March day, when she was 84 and suffering from congestive heart failure, my beautiful mother went to the garage and measured her Camry’s tailpipe, planning to buy a hose to fit it. She was grieving my father’s recent death, living alone in Connecticut with occasional visits from her three grown children in California, and suffering too much chest pain and breathlessness to weed her beloved garden. “There is a possibility for a timely escape,” she wrote in the journal I discovered after her death. “And I will take it.”

She is hardly the first person to yearn to hurry death. The medieval text “Ars Moriendi” (The Art of Dying) called it “the sin of impatience.” But times have changed. As Medicare’s announcement last week of plans to reimburse doctors for end-of-life discussions shows, a once hidden conversation about medical autonomy and the downsides of life-support technologies is exploding into the wider culture. In five states, medical aid in dying is now legal, and bills permitting it have been introduced in legislatures in more than half of the other states. As with same-sex marriage and marijuana, the question may be not whether the laws will change, but when.

I support freedom of choice. But after shepherding my parents through their last years, I doubt that legalizing aid in dying alone will end the current epidemic of unnecessary deathbed suffering.

The way the medical system handles death is broken, and requires bigger fixes than freedom of consumer choice. Many of us will face quandaries far too nuanced to be solved by aid-in-dying laws. My parents certainly did.

At the age of 79, my father suffered a devastating stroke. A year later, he was hurriedly given a pacemaker, which prolonged his worst years while doing nothing to prevent his slide into dementia and misery. When he was unable to remember the names of all his children, my mother and I tried, without success, to get his device painlessly deactivated. It was heart-rending, but in harmony with our values. My father was a stoic. While still mentally competent, he would not have chosen to end his life. But he believed in letting nature take its course. My mother and I, likewise, wanted nature to take my father from us, not an act of his or our own hands.

Today, a slow, bumpy path to the grave like my father’s is common. About seven out of 10 of us now live long enough to die from chronic conditions like heart disease, emphysema, dementia, diabetes, cancer and kidney failure.

Many will spend years in a “gray zone” where medical choices aren’t black and white. We will each have to decide when to allow a natural death and when to say yes to yet another medical technology that might fend off death without restoring health: implantable defibrillators, dialysis, feeding tubes, ventilators and the like.

We will need brave, truthful doctors willing to discuss when to stop fighting for maximum longevity and explore, instead, what may matter more to us. Like living independently at home for as long as possible. Like forgoing treatments that are worse than the disease. Like managing pain. Like living a meaningful life despite physical limitations, and dying a good death, surrounded by one’s family.

This is the province of palliative care, currently medicine’s tin-cup specialty. Its doctors integrate curative medicine, symptom management and shared decision making. Their numbers are too small to meet the need and their comparatively thin paychecks are often covered by philanthropies rather than insurance. Adequately paying them requires redirecting how Medicare money is spent.

Medicare currently pays meagerly for palliative care, hospice and home nursing. It provides hospice care only to patients willing to forgo all curative treatments. But it pays oncologists a 4.3 percent markup on drugs they administer, some costing $10,000 a dose and prescribed after a cure has become a pipe dream. It will pay over $100,000 for open-heart surgery on a patient who may be too fragile to survive it.

This helps explain why a quarter of Medicare payments go for treatment in the last year of life, often last-ditch attempts at cure rather than care. But in a positive change, Medicare is currently selecting hospices for a pilot program that will let some patients receive palliative care without requiring them to forgo what are typically considered curative treatments. And Medicare’s new willingness to pay for discussions of end-of-life options is another good step.

Such programs may start to reduce the widely recognized problem of overly aggressive medical treatment, and attendant suffering, near the end of life. Studies have found that about a third of Medicare patients have surgery in their last year of life, and 17 percent die in an intensive care unit or shortly after a stay. Too many families have cursed, in hindsight, the false hopes, unheld conversations and rushed medical decisions that led them there.

And this matters because death is relational. It leaves an emotional legacy. Everything we do affects those we love, including the manner of our dying. Witnessing death in an intensive care unit often leaves family members with depression, anxiety and complicated grief. So does taking one’s life without saying goodbye.

That is why I am deeply glad my mother did not follow through on her intentions that March day — and equally grateful she decided not to put her fragile body through risky heart surgery that might have led her to a nursing home or a death in an intensive care unit. Instead she died naturally the following September, a month after she had a heart attack.

The memory of her last weeks under hospice care continues to enrich my life. She’d been an uber-homemaker: competent, perfectionistic, self-reliant and far more skilled in caring for others than in accepting help. Yet the dependence she’d dreaded released in her a sweetness, acceptance and wisdom that I’d never before known. She had time to say goodbye to me, and to urge me to “cherish” my longtime partner, Brian. “I love him for what he’s done for you,” she said.

In the hour of our deaths, most of us will yearn not to cut short our time but for a “soft technology” of compassion, caring and interpersonal skill. We will want to give someone our last words and final blessings. We will probably hope to have someone we love at our side, to be forgiven for things we regret and to be remembered. To truly die with dignity, we will need good nursing, practical support, pain management and kindness. All should be better reimbursed by Medicare.

Liberalizing aid-in-dying laws need not preclude any of this, but it will not alone supply it. Dying rarely lends itself to workarounds. It is a messy, nuanced, unpredictable, deeply human, labor-intensive ordeal, and for most of us, it will always be so. It may involve suffering and take time. We need to get honest about this, and pay decently for it.

Katy Butler is the author of “Knocking on Heaven’s Door: The Path to a Better Way of Death” and the administrator of the Slow Medicine group on Facebook.

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Forwarded as received.

Subject: Fwd: Urgent info and announcement for your seniors at your session

> >
> > Ya Ali Madat team,
> >
> > PLEASE SHarE THIS EMAIL WITH YOUR TEAMS.
> >
> > Just to briefly let you know that there was a building fire last evening
> > around 5 pm, right at the doorstep of Darkhana (Vancouver) and all the occupants of
> > that building as well as the adjoining building were evacuated.
> >
> > There are about 17 seniors/Families that were affected.
> > Darkhana Social hall was set up as the emergency centre and lots of the
> > residents of those building were taken there (including non-Ismailis).
> >
> > Some of the ISC team members from Darkhana as well as IVC and our own EMT
> > team members were there to support the seniors and all individuals and by
> > 1.00 am this morning everyone of the seniors were placed with friends
> > and/or family.
> > Most of these seniors are on multiple medications (and most of them dont
> > know what they are on) and they had none on them. Thankfully due to our own
> > Ismaili Pharmacist next door, and the centralized system, she was able to
> > supply them all with what they needed.
> > The team worked amazingly well with each other and it was good to see our
> > own team work so well with the distressed seniors.
> >
> > Although the short term solution was provided, to the victims but as you
> > know its hard for them and their families now to struggle to go through the
> > legal / financial and logistic hoops as well as re-adjust to their new
> > surrounding (whilst they wait for whatever repairs etc) and so they are
> > distressed for sure. With Khushiali coming up it is more stressful as their
> > mind is all over the place now:(
> > Please be there to support anyone of them.
> >
> > One thing I noticed is NONE of them had a "GRAB AND GO" kit and we need to
> > emphasize that everyone should have one.
> > They were in shock and disoriented and could not remember the phone #s of
> > their family etc. It took them a long time to react to the significance at
> > what had happened:(
> >
> > We should encourage and help all our seniors to "be prepared" for any sort
> > of disaster.
> >
> > CHECK AND SHARE THIS WEBSITE;
> > http://vancouver.ca/files/cov/safety_kit_handout.pdf
> >
> > *PLEASE ANNOUNCE THE FOLLOWING AT YOUR SESSION AS WELL AS YOUR CLASSES:*
> >
> > *DO YOU HAVE A GRAB AND GO KIT?*
> >
> > *IN CASE OF AN EMERGENCY, YOU SHOULD ALWAYS HAVE A SMALL GRAB AND GO KIT
> > THAT SHOULD BE PLACED NEAR YOUR ENTRANCE AREA SO IT IS EASILY ACCESSIBLE
> > AND YOU CAN TAKE IT WITH YOU WHEN EVACUATING.*
> > *IT CAN BE A SMALL BAG THAT IS EASY TO CARRY.*
> >
> > *SOME OF THE ESSENTIAL ITEMS FOR SENIORS ARE:*
> >
> > *LIST OF PRESCRIBED MEDICATIONS*
> > *EXTRA PRESCRIBED MEDICATIONS*
> > *IMPORTANT DOCUMENTS - OR PHOTOCOPY OF YOUR*
> > *SOCIAL INS #*
> > *PASSPORT*
> > *INSURANCE PAPERS/ CONTACT INFO*
> > *LIST OF NAMES AND PHONE #S OF YOUR FAMILY /FRIENDS*
> > *EXTRA PAIR OF YOUR EYE GLASSES*
> > *EXTRA CAR KEYS/ HOME KEYS*
> > *ONE CHANGE OF CLOTHES*
> > *EXTRA SOFT FOOT WEAR*
> > *1-2 BOTTLE OF WATER*
> > *TOILET PAPER*
> > *FLASHLIGHT*
> > *SOME DRY FOOD AND NUTS*
> >
> > *Thanks so much, *
> >
> > *Regards*
> >
> > *Almas*
> >
> >
kmaherali
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Post by kmaherali »

The Error in ‘There’s Nothing More We Can Do’

“There’s nothing more we can do.”

These words are often spoken by a physician just before transitioning a patient to hospice and palliative care and are regrettably uttered only days, if not hours, before the person dies. These words leave no room for hope; they make a transition to comfort care a much-feared and often avoided final destination.

Yet here’s the reality: More can always be done. More important, patients know exactly the “more” that they want. The real question is: Why don’t we ask?

“If I had a magic wand, what is it you would wish for today?” This is a question I ask of my patients receiving hospice and palliative care.

No one has ever asked that I rid them of their disease. Rather, I have been met with immediate replies of “make my anxiety go away” or “let me travel to see my family” and “let me go home and sit in my garden.”

These are the things that people say, over and over again, when they are given the opportunity to answer. The real test for physicians, then, is being willing to meet the challenge of discovering our patient’s true wishes, the fulfillment of which may push us well outside our own professional comfort zone.

Sometimes, it is actually the medical team’s best-intended professional wisdom that stands in the way of having patients’ wishes fulfilled. The patient who taught me that, whom I’ll call Ms. Weatherby, was a remarkable 57-year-old with a horrible collection of diseases, which had conspired to stop her lungs from working.

When I first met her she was already on a ventilator, a breathing machine in the intensive care unit, keeping her alive. The sedation required for such life support measures to be tolerable renders most people essentially unconscious. Not so for Ms. Weatherby. She was sitting upright in her bed, tubes entering and exiting nearly every orifice, yet she found ways to position her laptop and journals and myriad colorful pens so that she could be in constant communication with her extensive circle of family and friends.

She was keenly aware that she was not going to make it out of the hospital alive. But she was equally aware that her splintered family was not ready just yet to lose her.

“I want my family to know I am at peace,” she wrote on one of her note pads in response to my magic wand question.

Physicians mostly assume that life support is such an uncomfortable level of medical intervention that no one would ever choose it if they knew no chance for recovery existed and certain death in the hospital would be their only future. Ms. Weatherby challenged that, not in that she thought she would leave the hospital or even the I.C.U. — she knew she wouldn’t. But she defied everyone’s assumptions that life would be too unpleasant and painful in such a setting to be worth living at all. She radiated gratitude.

For several days, Ms. Weatherby had been complaining of increasing abdominal discomfort. She was receiving nutrition via a tube running from her nose into her stomach so had not been able to taste food in days. When I stopped in to see her she grabbed a pen and journal and wrote, “I vomited head to toe last night.” This has to be one of the worst events to happen to someone alert on a ventilator as you have no ability to activate your own gag reflex with a tube stuck down your throat. But she continued to write, undaunted, “My stomach feels much better.” She patted her stomach and kept writing. “After they gave me a bed bath, changed my sheets and clothes, I got to brush my teeth!” Just then she looked like the Cheshire cat showing off her pearly whites. It was the first time anyone had thought to try to let her do it since she had been intubated. “It feels so good. I am looking forward to doing it again tonight!” I said with a laugh, “Yeah, but this time without the vomiting, O.K.?”

Astonishingly, Ms. Weatherby was able to be taken off the ventilator only a couple of days later, placing her in a rare position to answer questions about her care.

“If your lungs weaken again, would you want the tube put back down your throat and be placed back on the breathing machine?” “If that’s what it takes to keep me alive, so be it. I am not ready to pull the plug yet if I don’t have to.” Knowing her as I did, I would have been shocked if she had given any other response. I quickly came to learn that other physicians did not hold that same perspective.

“I’m sorry? You’re telling me she wants to be re-intubated?” Ms. Weatherby’s attending physician exclaimed. “I’m not clear how this is palliative care? She’s never leaving the hospital.”

When advanced life support becomes comfort care, where do we draw the line? Based upon what I learned from Ms. Weatherby, I would argue that palliative care begins by removing the line.

When I returned to Ms. Weatherby’s bedside the following morning, she was re-intubated, alert and tapping away on her laptop. She immediately reached for a notebook and a magenta pen and, as if reading my mind, wrote, “I still want to live.” I said, “I know you do.”

I asked if I could do anything for her. She shrugged, then paused; placing her palms together she bowed her head. “Pray for you?” I whispered. She nodded. “I can do that.”

We both smiled. She straightened her gown and I noticed her bare feet bumping up against the edge of the I.C.U. bed, her flimsy blanket not able to reach so low and maintain modesty above.

“And how about some colorful cozy socks to match your glow?” She nodded emphatically with joy in her eyes. Simple pleasures and abundant gratitude … that was Ms. Weatherby’s way.

She continued to work relentlessly to bring her fractured family back together. Specifically, Ms. Weatherby wanted to ensure that her own death would unite and heal all those she so deeply loved.

Perhaps what makes medicine a frontier of endless discovery has less to do with the scientific advances pushing the envelope on our medical know-how and more to do with how our patients challenge what we believe we know. A week later, Ms. Weatherby’s heart, lungs and kidneys stopped working. Much of her family had been able to travel to see her in person; others visited via Skype.

She died as she had lived, living each moment to the fullest, grateful for what she had been given. Perhaps the choice between continuing “curative” treatment with no hope of cure and reorienting care to fulfilling hopes of what makes life worth living is no more complex than simply asking people to make a wish.

For some, like my father, it may mean being surrounded by the comforting sounds of home like his cat’s purr, the whir of hummingbird wings outside the window and his wife’s snore as she sleeps by his side. And for others, it may mean being left on a ventilator so they can finish saying their goodbyes, knowing then that they may rest in peace.

The only time doctors are left with “nothing more we can do” is when we fail to ask.

Dawn M. Gross, a hospice and palliative care physician who lives in San Francisco, is at work on a book about end-of-life care.

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Zen and the Art of Dying Well

What is the “right” way to die? We’re experiencing a zeitgeist moment about that. “Being Mortal: Medicine and What Matters in the End,” by Atul Gawande, is a best-selling book. Videos by Brittany Maynard, a 29-year-old who wanted to die in a way of her own choosing, went viral last year. And in more than 20 countries, thousands of people have dined and discussed dying through a project called “Death Over Dinner.”

In fact, we can’t afford not to have this conversation. According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings. Economists call this a “cure at all cost” attitude. And in the next 25 years, longer life spans and the aging of baby boomers are expected to double the number of Americans 65 years or older, to about 72 million.

What if the most promising way to fix the system is to actually do less for the dying?

That’s what the not-for-profit Zen Hospice Project has been trying to prove through a fascinating, small-scale experiment in San Francisco’s Hayes Valley neighborhood.

More...

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Post by kmaherali »

An Aging Population, Without the Doctors to Match

WE talk a lot these days about what constitutes a good way to die. There’s also much discussion about the art of healthy aging.

But largely absent from the conversation are all the people between the two. People who aren’t dying but who grow more frail. People who have significant health concerns. People who suddenly find themselves in need of care.

People who are, by and large, miserable.

We have a name for this part of life in our family. We call it “the land of pink bibs.”

In his 70s, my father, a highly respected orthopedic surgeon, developed Alzheimer’s. Later in the course of the disease, he broke his hip. One day when we visited him at the nursing center, about six months after his accident, we found him sitting in a row of patients all wearing pink bibs, left on after they had finished eating. Like the others, his head was bent toward his lap; though his eyes were open, they were not focused on anything. His shoulders slouched, like a rag doll’s, and his mouth hung slightly ajar.

We were not prepared to see him like this.

“Oh, not a stroke,” the nurse said. “He is fine. He’s just on a new drug — a mood stabilizer. He was becoming violent to the aides. Patients often get like this when they have Alzheimer’s.”

We were suddenly confronted with decisions about his care that we didn’t understand. Many families face similar questions: Do we move Mom out of her house to assisted living? Dad is so forgetful and argumentative, does he have dementia? Do our parents have enough money to hire a caregiver — and do we? When should we move them to a nursing home? What kind of care will they need when they get there?

These are difficult questions. Yet when you look around for help, you find there isn’t much to be had.

Why not? Most health care professionals have had little to no training in the care of older adults. Currently, 97 percent of all medical students in the United States do not take a single course in geriatrics.

Recent studies show that good geriatric care can make an enormous difference. Older adults whose health is monitored by a geriatrician enjoy more years of independent living, greater social and physical functioning and lower presence of disease. In addition, these patients show increased satisfaction, spend less time in the hospital, exhibit markedly decreased rates of depression and spend less time in nursing homes.

Our family witnessed the value of geriatric care firsthand.

After seeing my father slumped in his chair, we reached out to a leading geriatrician and researcher, Dr. Kenneth Brummel-Smith of Florida State University. After listening to me recount my father’s health history (his broken hip and significant arthritis), Dr. Brummel-Smith suggested that the cause of his behavior might have been pain. The doctor explained that, of all the suffering that goes with dementia, pain is one of the most common and least recognized, simply because patients can’t express themselves.

Dr. Brummel-Smith urged me to have my dad examined by a local geriatrician, whom he recommended. In a week, the new doctor came to the nursing home. Dr. Brummel-Smith’s suspicions had been right. Despite my father’s broken hip and history of arthritis, he was receiving nothing for pain. Immediately, the geriatrician put my father on a regimen of 1,000 milligrams of Tylenol, three times a day. He discontinued the mood-altering drug. After that, my father’s behavior rapidly turned around. His quality of life vastly improved. He could look around at his surroundings. He could converse. He could smile when we played music for him.

My parents were fortunate to have gone into a nursing home where their primary care Internal Medicine physician and her partner followed...

But, as relieved as I felt, I could not help wondering: What about all the other people in nursing homes who aren’t as fortunate as my father?

Currently there are fewer than 8,000 geriatricians in practice nationwide — and that number is shrinking. “We are an endangered species,” said Dr. Rosanne Leipzig, a geriatrician at Mt. Sinai Medical Center in New York.

At the same time, the nation’s fastest-growing age group is over 65. Government projections hold that in 2050 there will be 90 million Americans 65 and older, and 19 million people over age 85. The American Geriatrics Society argues that, ideally, the United States should have one geriatrician for every 300 aging people. But with the looming shortage of geriatricians, the society projects that by 2030 there will be only one geriatrician for every 3,798 older adults.

Why such a growing gap between an increasing number of patients and a decreasing number of doctors required to treat them? Geriatrics is a low-paying field of medicine, even though it requires years of intensive specialization. Most geriatricians are reimbursed solely by Medicare and Medicaid, whose rates make it unsustainable to keep an office running. Many medical clinics and geriatric hospital units nationwide are closing down.

For those entering their senior years, according to Dr. David Reuben, a leading geriatrician at the U.C.L.A. Medical Center, a true national crisis is brewing.

A vast majority of Americans have no conception of what lies ahead and — without geriatricians available to provide their health care — how substantially their lives will be affected.

I know. It means that soon we may all soon be in the land of the pink bibs.

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Post by kmaherali »

The End Isn’t Near

Not long ago, my endocrinologist announced: “You’re healthy. Take care of yourself and there’s no reason you won’t live for decades.”

“What are you talking about?!” I answered. The poor guy was puzzled by my reaction to his cheery news. But I found it disorienting, unnerving.

I was given a diagnosis of insulin-dependent diabetes 53 years ago, at age 7, and this was the first doctor who had ever expressed optimism about my life expectancy. When I was a kid, the conventional wisdom was that my life would probably be cut very short by terrible complications — failed kidneys, nerve damage, cardiovascular carnage. A few months after the diagnosis, I overheard an anxious older cousin murmur that I would be lucky to make it past 35. The terrible complications never came, but my mind-set has long been: Anything after age 35 is borrowed time.

Now that my doctor has semiofficially rewritten my life script, I am off-kilter. How in the world am I going to get through all the extra time that remains?

I’m not the only one with this happy but unsettling problem. The Joslin Diabetes Center has awarded medals to nearly 5,000 diabetics who survived for at least 50 years, including me. We have a private Facebook page. Sometimes my fellow codgers express astonishment that they are still here, thanks to their diligent management of the disease, genetic luck and medical advances like improved insulin formulations, insulin pumps and blood-glucose monitoring technology. Medical progress is allowing people to live for decades with other maladies that used to be tickets to an early grave, like H.I.V./AIDS.

In my case, over the years, the likelihood of impending death was usually not a conscious obsession; it was more like a background hum, akin to annoying traffic noise outside an apartment building. But it was always there when I decided to stop ignoring it. One consequence was an anxious urgency to get things done. I haven’t achieved more than a tiny fraction of my goals. So part of me is inspired by my doctor’s optimistic announcement, and welcomes the news that there still might be enough time to accomplish something worthwhile.

But there’s another, darker part of me, one that emerged occasionally when the intimations of mortality got a little louder. I’ve been frightened by thyroid cancer, prostate problems, bewildering fatigue and weight loss. I’ve worried about the impact of these maladies on my family, of course, but in a little corner of my mind I’ve also been relieved, thinking, This is it! The big one! It’ll all be over soon, no need to keep trying and failing and trying again.

Now, lurking in that same corner, is resentment that my doctor has deprived me of a good excuse to give up.

That excuse used to apply to life as well as work. Of course one doesn’t need to be a diabetic to suffer from depression. But an ingrained expectation that everything will soon dissolve has provided an extra reason for the chronic, low-ebb sadness that has muffled my experience, and for the too-frequent sense of not being fully alive. I would be surprised if other people who expected sharply shortened life spans didn’t get the same sort of blues.

Nevertheless, my doctor’s prediction has prodded me to shake off a complacent acceptance of that sadness, and do more to embrace and appreciate the world. I’ve been telling myself that since there is a decent chance that I’ll live for many more years, I really need to do a better job at getting through time. Maybe it’s not too late to learn how to be in the here and now, to live mindfully, even have fun.

Astonishingly, I’ve made a little progress lately. A meditation practice that I’m taking seriously has helped me focus more intently on what’s in front of me. The world sometimes seems more vivid, and I’ve even been cheerful while laughing at an inane reality TV show with my daughter, and holding my wife’s hand and walking in the woods, and praying at a new synagogue we’ve recently joined. The improvements are incremental, and I don’t yet have confidence that in 20 or 30 years I will be a different person. But I have some cautious hope.

The prospect of longer life brings other unexpected challenges. For one, I’m confronting the tangible possibility of retirement for the first time. While I’ve put aside money for that purpose and my wife and I have met with financial planners, these were dutiful gestures for the sake of her and our daughter. Their future demanded a kind of automatic tribute, but not mine, as I could never envision myself in a time period that stretched more than a year or so from the present.

Now I need to regroup. I need to pay attention to those actuarial tables with average life expectancies that the financial planners used to trot out, because suddenly they apply.

Adding it all up, I’m glad about my doctor’s prognosis. My wife dreams of retiring in Costa Rica or Cambodia, where it will be possible to live well on our modest retirement savings. So I’ve been deliberately trying to picture myself at 75 or so, striding below squawking toucans in a rain forest or buying vegetables in a market in Siem Reap.

Right now, all I can see, from a great distance, is someone else — a grayish and indistinct figure, a wraith. Perhaps if I keep concentrating on him, and imagining the sights and sounds and smells he is experiencing, eventually he will feel unreservedly happy to be alive, and, with enough practice, he will be certain that he belongs in the world.

Dan Fleshler blogs at The Insulin Chronicles and is working on a memoir about Type 1 diabetes.

http://opinionator.blogs.nytimes.com/20 ... 05309&_r=0
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Post by kmaherali »

Pitfalls for Proxies

Of the many factors that affect the experience of dying, the one that patients and families often have the greatest control over is making decisions that are in the patient’s best interest. I recently participated in research on barriers to quality end-of-life care as part of a study released today in the Journal of Palliative Medicine. Some of the hurdles we identified, such as financial limitations or access to top doctors, may require societal change. But I am focusing here on the personal part of the puzzle that all patients, whatever their socioeconomic status, should have the potential to influence.

Most of us will lose our ability to make medical decisions for ourselves in the last phase of our lives. Patients with illnesses like dementia may lose the ability to make decisions months or even years before they die. Others who die of illnesses like cancer, liver disease and kidney disease may lose the ability to make decisions during the last days of their lives.

As the illness progresses, many struggle with distressing symptoms like severe pain, nausea, air-hunger, confusion and agitation. At this point, most patients just do not have the bandwidth to process complex medical information, weigh the risks and benefits and make choices.

When the patient is unwilling or unable to make medical decisions, the health care proxy is activated and he or she is obligated to make all health choices on behalf of the patient. These may be related to withdrawing or withholding life support, instituting artificial liquid feeding, attempting resuscitation and even whether or not to participate in autopsy and organ donation.

The concept of proxy decision-making assumes that a human being is capable of temporarily suspending personal beliefs and biases, metaphorically entering the head of the patient, and making decisions that the patient would have made under the given circumstances. Processing complex medical information and making high-stakes decisions for another person is always fraught with uncertainty and stress. Proxy decision-makers are often unprepared, and many may not be cognizant of the patient’s values and wishes. Even when the patient has well-documented advance directives, ultimately, the proxy has the power to override these directives.

As part of our research, my lab at Stanford interviewed many patients and patient’s family members on this topic; some of their stories are included in this video.

There are three common traps that the proxy decision-maker should be aware of in trying to make decisions for the patient – many of them life-altering decisions that must be made in a stressful situation with little time to think. In the examples below, patients’ names and details of their cases have been altered to protect their privacy.

The first and most common trap is what I call the Call of Love. Darlene, a patient with advanced lung disease, completed advance directives and the Physicians Order of Life Sustaining Treatment stating clearly that she did not want to be resuscitated if her heart were to stop. A bad pneumonia pushed Darlene into respiratory failure and she lost consciousness and would have died. Her partner, Carl, who could not imagine a life without Darlene, used his proxy status to override her directives. Darlene was resuscitated and stabilized on life support and eventually discharged from the hospital. However, Darlene was terribly upset at Carl for preventing her from dying naturally, which is what would have happened if resuscitation had not been attempted. When Carl argued that his decision to override Darlene was correct as she was “saved,” Darlene angrily responded, “That’s because you think that I want to live this way with this horrible disease. How can I ever trust you again?”

Proxy decision-makers can and do override the patient’s stated wishes. If resuscitation prolongs the patient’s life, the proxy views this as evidence that the right decision was made. While some patients are willing to allow the proxy to override their decisions, most expect the proxy to uphold their wishes.

The second trap to avoid is the Call of Duty. Jong, a Korean-American patient, was dying with metastatic cancer. A cycle of chemotherapy wiped out his immune system; he then succumbed to a vicious bug and was admitted to the intensive care unit for maximal life-support. Jong did not have advance directives and his wife, Soo-jin, was his default proxy decision maker. Despite maximal therapy, Jong’s condition deteriorated and the medical team wanted to withdraw life support and allow him to die.

Soo-jin was a soft-spoken woman who was respectful and deferential to the doctors. However, she categorically refused to entertain any discussions about withdrawal of life support.

One evening, after yet another long and ineffective discussion, I asked the question that had been echoing in my head. Is this what Soo-jin would want for herself, were she in her husband’s shoes? Of course not, she said. She would want to just die peacefully. So why was she subjecting her husband to this fate? “The duty of a good wife is to save her husband,” she said softly and with steely determination. The call of duty is loud and difficult to ignore. Here, the role as a dutiful spouse or parent or sibling obligates the proxy to execute decisions for the patient that the proxy would never stomach for himself or herself.

The final trap to avoid is the Call of Redemption. James was an octogenarian with severe heart failure. He had been hospitalized several times in the past year. Over the holidays, he lost consciousness and his neighbor called 911. He was admitted to the intensive care unit and placed on life support. Despite maximal medical therapy, his blood pressure remained extremely low, his kidneys shut down and he could not be aroused. The social worker tracked down his son, John, who lived in another state. John was busy with his life and had not visited his father for a few years. When he arrived, the I.C.U. team met with him and asked for his permission to withdraw high-intensity treatments to allow his father to die.

As John sat at the bedside of his dying father, all he could remember was the Thanksgiving dinners he had missed, and the phone calls he should have made to his father. Now, arriving to see his father at death’s door, John’s strong instinct was to take on the role of the defender and fight to protect his father from the doctors who wished to withdraw life support. In situations like this, the proxy (knowingly or unknowingly), is primarily motivated by his own need to have one last opportunity to repair the broken relationship and make amends to redeem himself.

As each of us identifies our proxy decision makers, the question we should ask is not just how much they love us but rather, how capable are they of implementing our wishes and preferences? The question each proxy should ask when making decisions on behalf of others is, who am I truly serving - the patient or myself?

http://opinionator.blogs.nytimes.com/20 ... ef=opinion
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Post by kmaherali »

The Wisdom of the Aged

For six New Yorkers age 85 and older, whose lives were
followed throughout the year, old age is a mixture of happiness
and sadness, with less time wasted on anger and worry.


Excerpt:

Do you know what you want to do when you get old?

Since the start of the year, the photographer Nicole Bengiveno and I have been visiting Mr. Sorensen and five other New Yorkers over the age of 85 — in hospital rooms and at birthday parties, on family vacations and at readings in nightclubs — and through it all, some version of Mr. Sorensen’s question has lingered: What is reasonable to ask of old age? Beyond the assaults of poverty or illness, to what extent can people shape the quality of life in their late years?

In New York City, the population age 85 and up has been growing at five times the rate for the city as a whole, doubling since 1980 to about 150,000. For this often invisible population, the first of its size, what does an older life really look like? And can it be better?

Throughout the year, the six talked unflinchingly about death and loss, but also about love and connection, about accomplishment and meaning. A paradox of old age is that older people have a greater sense of well-being than younger ones — not because they’re unreservedly blissful, but because they accept a mixture of happiness and sadness in their lives, and leverage this mixture when events come their way. They waste less time on anger, stress and worry. As Ping Wong, 90, put it: “When you’re young, the future is so far away, and you don’t know what will happen to you and the world. So when you’re young, you have more worries than the elderly. But I don’t worry now.”

More...

http://www.nytimes.com/2015/12/27/nyreg ... d=71987722
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Post by kmaherali »

25 Signs and Symptoms of Alzheimer's Disease

SLIDE SHOW:
http://www.msn.com/en-ca/health/medical ... md#image=1

Is it Alzheimer’s?


Everyone struggles to come up with a name once in a while. But how can you tell if it's more serious?

"One symptom alone does not necessarily indicate that a person has Alzheimer's or dementia," says Raj C. Shah, MD, of the Rush Memory Clinic at Rush University Medical Center, in Chicago. (Dementia is chronic loss of cognition, usually affecting memory, and Alzheimer’s causes 50% to 80% of dementia cases.)

There are many other causes of memory loss, including vitamin B12 deficiency, and brain, thyroid, kidney, or liver disorders. However, having several other symptoms could be a sign of Alzheimer's disease (AD).Recognizing the signs of dementia can help lead to a quicker diagnosis.

Getting diagnosed

Even if someone has Alzheimer's, it doesn't mean his or her life is over; a person with AD can live a meaningful and productive life for many years, but it's important to get a proper diagnosis.

People often wait too long to seek help, says Dr. Shah.

"Most diagnoses are still made in the moderate stage, after most individuals have been experiencing symptoms for years already," says Dr. Shah. "It doesn't help the person or family to wait until symptoms become so obvious that the diagnosis can be easily made. It is better to seek an evaluation earlier to help maintain quality of life and to prevent social or medical crises due to memory loss."
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Post by kmaherali »

World’s first anti-ageing drug could see humans live to 120

The world’s first anti-ageing drug will be tested on humans next year in trials which could see diseases like Alzheimer’s and Parkinson’s consigned to distant memory.

Scientists now believe that it is possible to actually stop people growing old as quickly and help them live in good health well into their 110s and 120s.

Although it might seem like science fiction, researchers have already proven that the diabetes drug metformin extends the life of animals, and the Food and Drug Administration in the US has now given the go ahead for a trial to see if the same effects can be replicated in humans.


“This would be the most important medical intervention in the modern era, an ability to slow ageing”

Dr Jay Olshansky, University of Illinois Chicago


If successful it will mean that a person in their 70s would be as biologically healthy as a 50 year old. It could usher in a new era of ‘geroscience’ where doctors would no longer fight individual conditions like cancer, diabetes and dementia, but instead treat the underlying mechanism – ageing.

Scottish ageing expert Professor Gordon Lithgow of the Buck Institute for Research on Ageing in California, is one of the study advisors.

“If you target an ageing process and you slow down ageing then you slow down all the diseases and pathology of ageing as well,” he said “That’s revolutionary. That’s never happened before.

“I have been doing research into ageing for 25 years and the idea that we would be talking about a clinical trial in humans for an anti-ageing drug would have been though inconceivable.

“But there is every reason to believe it’s possible. The future is taking the biology that we’ve now developed and applying it to humans. 20 years ago ageing was a biological mystery. Now we are starting to understand what is going on.”

More...
http://www.telegraph.co.uk/science/2016 ... ve-to-120/

******
There is a related article:

Dogs Test Drug Aimed at Humans’ Biggest Killer: Age

Extract:

The drug, rapamycin, which improved heart health and appeared to delay the onset of some diseases in older mice, may not work the same magic in dogs, for another. There is also a chance it could do more harm than good. “This is just to look for side effects, in dogs,” Ms. Gemmell told Bela’s many well-wishers.

Technically that is true. But the trial also represents a new frontier in testing a proposition for improving human health: Rather than only seeking treatments for the individual maladies that come with age, we might do better to target the biology that underlies aging itself.

More...
http://www.nytimes.com/2016/05/17/us/ag ... ctionfront
Last edited by kmaherali on Tue May 17, 2016 5:31 am, edited 1 time in total.
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Post by kmaherali »

Better Aging Through Practice, Practice, Practice

I can’t promise this will prolong your life. But it will improve it.

Extract:

"Let me suggest something that might do all of these things — which is to say, might not — but will, as nothing else will, provide you with a deeply satisfying sense of yourself that you did have when you were much, much younger. Find something — something new, something difficult — to immerse yourself in and improve at."

http://www.nytimes.com/2016/05/01/opini ... ef=opinion
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Post by kmaherali »

Obama’s Pointless Cancer ‘Moonshot’

Oslo — EVER since Neil Armstrong walked on the moon, American politicians have promised “moonshots” — huge programs, stocked with technology and experts, to solve presumably intractable problems. A common target is cancer: Earlier this year President Obama announced the National Cancer Moonshot Initiative, a $1 billion program led by Vice President Joseph R. Biden Jr.

But cancer isn’t space travel. The growing cancer epidemic is not a problem that medical science is about to solve. In fact, it is a problem we are about to make worse. The better we get at keeping people alive, the older they will get, and the more cancer there will be in the population. How we deal with this paradox will shape the future of society, and our leaders need to understand why.

More...
http://www.nytimes.com/2016/05/27/opini ... d=71987722
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Post by kmaherali »

Aging, but Still Working, in Singapore

Extract:

Dealing with an aging population is one of the major challenges that the city-state faces as it cements its status as an advanced cosmopolitan nation. Just 50 years after it gained its independence from Malaysia, Singapore has one of the highest per capita rates of gross domestic product in the world, and it boasts world-class systems of education, social housing and health care.

Dealing with an aging population is one of the major challenges that Singapore faces as it cements its status as an advanced nation.

Yet such rapid progress has led to a divergence in lifestyles between the younger generation, brought up in an age of relative security and material comfort, and their grandparents, people of the so-called Pioneer Generation (as the government designates citizens born before 1949). How to care for the elderly has become a major topic of public concern. Singapore is grappling not only with the practical effects of a growing social phenomenon but also with the impact that this has on its identity as a country that straddles modernity and tradition, East and West.

.......

At the heart of the debate is the idea of the Southeast Asian family. Across the three main ethnic groups in Singapore — Chinese, Malay and Indian — one major similarity is the expectation of three generations living under the same roof. Grandparents traditionally live with their children and grandchildren once they have retired. They are expected to contribute to housework and the supervision of the youngest members of the family. In return, they enjoy the emotional and financial support of their families.

“Looking after your parents,” in this still strongly Confucian-influenced society, is a concept most Singaporeans have grown up with. So the notion of parents’ going out to work in a job past the retirement age, particularly in physically demanding, low-paid jobs like the food-hall cleaners’ work, sits uneasily with traditional ideas of filial duty.


More...
http://www.nytimes.com/2016/06/08/opini ... d=71987722
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