History > 2008 > USA > The elderly (I)

Matt Kassin, 51, helps his mother, Doris Golden, 82, daily.

Photograph: Josh Haner/The New York Times

More Men Take the Lead Role in Caring for Elderly Parents

NYT

29.11.2008

http://www.nytimes.com/2008/11/29/us/29sons.html
 

More Men Take the Lead Role

in Caring for Elderly Parents

November 29, 2008
The New York Times
By JOHN LELAND

When Peter Nicholson’s mother suffered a series of strokes last winter, he did something women have done for generations: he quit his job and moved into her West Hollywood home to care for her full time.

Since then, he has lost 45 pounds and developed anemia, in part because of the stress, and he is running out of money. But the hardest adjustment, Mr. Nicholson said, has been the emotional toll.

“The single toughest moment was when she said to me, ‘And now who are you?’ ” he said. “My whole world just dropped. That was the pinnacle of despair.”

Mr. Nicholson, 53, is part of a growing number of men who are providing primary care for their aging parents, usually their mothers.

The Alzheimer’s Association and the National Alliance for Caregiving estimate that men make up nearly 40 percent of family care providers now, up from 19 percent in a 1996 study by the Alzheimer’s Association. About 17 million men are caring for an adult.

“It used to be that when men said, ‘I’ll always take care of my mother,’ it meant, ‘My wife will always take care of my mother,’ ” said Carol Levine, director of the families and health care project at the United Hospital Fund. “But now, more and more men are doing it.”

Often they are overshadowed by their female counterparts and faced with employers, friends, support organizations and sometimes even parents who view caregiving as an essentially female role. Male caregivers are more likely to say they feel unprepared for the role and become socially isolated, and less likely to ask for help.

Women still provide the bulk of family care, especially intimate tasks like bathing and dressing. At support groups, which are predominantly made up of women, many women complain that their brothers are treated like heroes just for showing up.

But with smaller families and more women working full-time, many men have no choice but to take on roles that would have been alien to their fathers. Just as fatherhood became more hands-on in the baby boom generation, so has the role for many sons as their generation’s parents age.

Mr. Nicholson said his family had not discussed who would take care of his mother, Bernice, if she became frail. But as the unmarried child among his two siblings, and the one who was most readily available, he had spent increasing time with her as she aged.

Still, he was not prepared for the isolation of full-time care. “There’s absolutely no involvement in the outside world,” Mr. Nicholson said. “When I finally get out to a Dodgers game, walking to the car, I say, Oh, this is what life is about. I forgot about this. I can’t be doing myself any good by not getting out of here.”

Isolation affects women as well, but men tend to have fewer lifelines, said Donna Benton, an assistant research professor of gerontology at the University of Southern California and director of the Los Angeles Caregiver Resource Network. Men are less likely to have friends going through similar experiences, and depend more on their jobs for daily human contact.

“That’s the harder part for men, to find someone to talk to,” Dr. Benton said. “It’s the emotional side: the guilt, the sadness, the anger. For men it becomes more stressful because they can’t talk about it. They feel cut off.”

And then there is the inevitable question: What happens when I have to bathe her?

“That’s where the rubber meets the road,” said Donna Wagner, the director of gerontology at Towson University and one of the few researchers who has studied sons as caregivers.

For Mr. Nicholson, the whole experience has been a journey into the surreal, but especially at bath time.

Though he is not squeamish about it, he said: “The weirdness permeates our relationship. She doesn’t know if I’m her husband or her boyfriend or her neighbor. She knows she trusts me. But there are times when it’s very difficult. I need to keep her from embarrassing herself. She’ll say things like, ‘I adore you.’ I don’t know who she’s loving, because she doesn’t know who I am. Maybe I’m embarrassed about it — it’s my mom, for Christ sakes. But it’s weird how the oldest son becomes the spouse.”

Matt Kassin, 51, said he had no role model for male caregiver in his family. His father had been distant; he, in turn, had been the rebellious son.

“I was the son who went through divorce, who needed to separate from my mom when I was teenager,” Mr. Kassin said. “I’m the son that wanted distance. Now I’m the son who hears every morning, ‘It’s so nice to hear your voice.’ ”

On a recent evening, Mr. Kassin visited his mother, Doris Golden, in her Manhattan apartment. Ms. Golden, 82, is in the early stages of Alzheimer’s and still lives independently, but relies on Mr. Kassin to arrange her schedule, pay her bills and make sure she remembers her daily tasks (his sister also helps).

His care has surprised his mother. “When he was young, I couldn’t get him to raise a finger,” Ms. Golden said. Her conversation looped repeatedly back to this point, and with each return, Mr. Kassin grew more irritated. That was when he was a teenager, he said, sharply; hadn’t he been more attentive since?

Finally she looked at him tenderly and asked, “When did I start relying on you?”

Interviewed apart from his mother, Mr. Kassin said: “It’s kind of like living my nightmare situation. But it’s a great opportunity here. Here’s the woman who nurtured me. She now is the child. You worry if you’re up for the challenge. If I don’t make this challenge, what kind of human being am I?”

In past generations, men might have answered this question by pointing to their accomplishments as breadwinners or fathers. Now, some men say they worry about the conflict between caring for their parents and these other roles.

In a 2003 study at three Fortune 500 companies, Dr. Wagner found that men were less likely to use employee-assistance programs for caregivers because they feared it would be held against them.

“Even though the company has endorsed the program, your supervisors may have a different opinion,” Dr. Wagner said. “I had a man who worked for a large company with very generous benefits, and he was told that if he took more time to go with his dad to chemotherapy, he was at risk of losing his job. He ended up not going with his father.”

Mr. Kassin said that although his employer had been understanding, he was reluctant to talk about his caregiving because “I think it would be looked at like, when they hire a male, they expect him to be 100-percent focused.”

“I don’t want to appear to be someone who has distractions that detract from performance,” he said.

For many men, the new role means giving up their self-image as experts, said Louis Colbert, director of the office of services for the aging in Delaware County, Pa., who has shared care of his 84-year-old mother with his siblings since her Alzheimer’s made it necessary.

“I’ve been a professional for 32 years,” Mr. Colbert said, “but yet I remember the first time I was driving to my mother’s house, being afraid because I didn’t know if I knew what to do.”

Once a year, Mr. Colbert organizes a get-together for male caregivers. The concerns they raise, he said, are different from those of women in support groups. “Very clearly, they said they wanted their role as caregiver validated, because in our society, as a whole, men as caregivers have been invisible,” he said.

This invisibility can extend to hospitals and nursing homes, said Amy Torres, helpline director at Fria, a national nonprofit organization based in New York that represents family members and residents in long-term care facilities.

“Nursing homes have a very difficult time dealing with male caregivers,” Ms. Torres said. “It’s unusual for them. The male caregiver is made to feel their interest in their relative is inappropriate. Our male callers say they’re made to feel what they’re doing is unusual, that it’s wrong.”

She gave the example of a son who was the health care agent for his mother and wanted to be in the room when the staff changed her diaper because he was concerned about her skin condition. “The staff refused to allow it,” Ms. Torres said. “They said the mother’s dignity was at risk.”

After two weeks of pressing, she said, he finally got his way. With a daughter, this would not have been an issue, Ms. Torres said.

And even when they are acknowledged, for many male caregivers, as for women, there is the lingering sense that whatever they do is not enough.

Mr. Nicholson said he knew this feeling too well. As a teacher, he could measure his contribution by the students’ progress. But with his mother, he can only watch her decline.

“I’m always asking myself, Am I even qualified for this?” he said. “Just because I love her a lot doesn’t mean that I have any idea if I’m doing the right thing, or doing what’s best for her.”

He sounded exhausted, rattled even.

“I don’t know if this is just the musings of someone who’s on the verge of tossing everything and putting her in a home,” he said. “But this is a very revealing journey about who I am to me and my family, and what’s important to me.”

    More Men Take the Lead Role in Caring for Elderly Parents, NYT, 29.11.2008, http://www.nytimes.com/2008/11/29/us/29sons.html?hp

Once Just a Sign of Aging, Falls Merit Complex Care

November 8, 2008
The New York Times
By JOHN LELAND

MEDFORD, N.J. — Katherine Aliminosa, 93, shattered her lower leg while getting snacks for her nieces.

Susan Arnold, 87, broke her hip hanging a photograph.

In mid-July, in a nursing unit of a retirement community here, the two women were at the start of a recovery process that both hoped would return them to their previous lives.

Their progress over the next few months, and their divergent outcomes, illustrate the unpredictable impact that common falls can have on the bodies of older people.

By early autumn, Ms. Aliminosa had graduated to an independent living apartment and was able to get around with a walker. She looked like a different person: more robust, content.

Though six years younger, Ms. Arnold never recovered her strength after hip surgery. Her muscles atrophied from inactivity, and she developed pneumonia. She died on Sept. 6.

Once considered an inevitable part of aging, falls are now recognized as complex, often preventable events with multiple causes and consequences, calling for a wide range of interventions, both psychological and physiological, that many patients never receive.

Even falls that cause only minor injury “need to be taken as seriously as diabetes,” said Dr. R. Sean Morrison, a professor of geriatrics and adult development at Mount Sinai School of Medicine in New York, because “they can be a real warning sign that something serious is wrong.”

Dr. Mary E. Tinetti, a falls expert at Yale University medical school, compared falls to strokes in their harmfulness, adding that people do not always report them or seek help, for fear their families will try to put them in nursing homes. For some people, Dr. Tinetti said, admitting that they fall is tantamount to admitting that they are no longer competent to take care of themselves.

Each year, 1.8 million Americans over age 65 are injured in falls, according to the Centers for Disease Control and Prevention. Some rebound as if the injury never happened. But for some, the fall sets off a downward spiral of physical and emotional problems — including pneumonia, depression, social isolation, infection and muscle loss — that become too much for their bodies to withstand.

In 2005, the last year for which statistics are available, 433,000 people over 65 were admitted to hospitals after falling, and 15,800 died as a direct result of the fall. Less visible are the many who survive the fall but not the indirect consequences.

When first interviewed in mid-July, Ms. Aliminosa and Ms. Arnold felt vulnerable and constrained, their world diminished. Both had led accomplished professional lives — Ms. Arnold as a school psychologist, Ms. Aliminosa as a medical researcher — and had been active in the community’s independent living apartments. But neither could be confident about what the future held.

Ms. Aliminosa said she was depressed, and able to walk only in very small stretches. A small woman with a soft voice and grainy New York accent, she barely filled her chair. She seemed defeated. “Emotionally I have not been well,” she said. “It’s made me very aware of my age, and that’s hard to accept.”

Ms. Arnold, by contrast, was full of emotional energy, so angry about her broken hip that she kicked out for emphasis as she talked, turning conversation into a full-contact sport. Before her fall, she had been preparing for a vacation with her daughter at a family beach house on Long Island — the same house where she had spread her husband’s ashes. Now that plan was gone.

“It kills me, it just kills me,” she said. “This was going to be the frosting on the cake, and somebody ate it.”

Of the two women, Ms. Arnold was up against the longer odds. One in five hip-fracture patients over age 65 die within a year after surgery, according to the C.D.C.; one in four have to spend a year or more in a nursing home. When younger people fall, they tend to break their wrists catching themselves, but in older people, who have slower reactions and less upper-body strength, the weight more often falls on their hips or heads. Any underlying conditions, like heart disease or respiratory problems, increase the chances of a downward health spiral.

Ms. Arnold had a history of pulmonary disease, and had been a heavy smoker, starting after high school. “She had a boyfriend in college,” her daughter, Margery Creek, said, “and it was the lesser of evils — sex, drinking or smoking.”

But her lung problems did not keep her down. In 2006, she took a 10-day trip to Sweden. Even after she fell and fractured a hip that autumn, she lived independently and was able to drive, returning to the beach house. That day in mid-July, even as she talked about depression, she took jubilant delight in photographs of her grandchildren and great-grandchildren. “Now if that isn’t the picture of a baby,” she said. “Isn’t she a sweetie?”

If Ms. Arnold were a machine, it would be simple to draw a straight line between her lung disease, her hip surgery and her chances of recovery. Older bodies typically have several weakened systems that are dependent on one another, and rely on drugs that may or may not work well together. “If you take 70-year-olds, on average they’re taking five medications,” Dr. Tinetti said. “When you get to 10 medications” — as a patient might after a fall — “the likelihood of adverse effects is close to 100 percent.”

But psychological factors can be as devastating as the physical trauma, Dr. Tinetti said. “It’s the fear of falling, the lost confidence. Good walkers stop walking, stop going to church. They become socially isolated and depressed.”

After Ms. Arnold’s first broken hip, she had reduced feeling in one foot, which added to the likelihood that she would fall again.

On July 6 this year, it happened: Ms. Arnold turned her body without moving her foot, pulling the closet door down with her when she fell and fracturing her hip bone.

“I’m outraged,” she said a week after the fall, raising her voice and then becoming fatigued. Her breathing was interrupted by coughing spasms. She said she was determined not to end up using an electric cart. “Disappointment,” she said, accenting each syllable. “I had a very good life.”

“But your life isn’t over,” said Deanna Gray-Miceli, an adjunct assistant professor of nursing at the University of Pennsylvania and an expert in geriatric falls who was looking in on Ms. Arnold in the nursing unit.

“Well, it bloody well is,” Ms. Arnold said. “I have no strength. Let’s talk about depression.”

The period of immobility after a fall is particularly dangerous, said Dr. Gray-Miceli, whose research includes studying a group of patients after falls. “Being immobile, you’re not taking deep breaths, you’re more prone to orthostatic pneumonia, or older people can develop urinary incontinence. And that can have a whole cascade of emotional consequences as well as the physical consequences, such as skin breakdown, pressure sores, bladder infection, lung infection.

“We also see temporary confusion from infection,” she added, “And that can lead to someone’s demise.”

Dr. Gray-Miceli’s work focuses on identifying the causes of falls, which might include treatable factors like changes in gait, low blood pressure, declining vision or heart arrhythmias, as well as conditions in the home. In a study by Dr. Tinetti, simple preventive suggestions from doctors, like physical therapy and changes in medication, reduced falls by 11 percent. (The C.D.C. offers tips to reduce falls at home, like removing loose rugs and making sure stairway handrails go all the way to the bottom, at cdc.gov/ncipc/duip/preventadultfalls.htm.)

For Ms. Arnold, it was too late. Shortly after surgery she grew depressed and fatalistic, her daughter said. “One morning when my brother was here, she woke up and said, ‘I’m weary, I’m just absolutely weary,’ ” Mrs. Creek said. “And she had no muscle that came back. Her arms had really gotten down to skin and bones. You hear that term — it certainly seemed that way, no muscle.”

In August, Ms. Arnold developed pneumonia and spent three nights in the hospital. Though she responded well to the medications, Mrs. Creek said: “It was just one more nail. She said she was ready to be with Dad.”

The last time Mrs. Creek called her, in early September, Ms. Arnold could recognize her voice but not respond, Mrs. Creek said. “I think she just said, ‘I’ve had it, I’m checking out.’ ”

Down the hall, Ms. Aliminosa’s response after her leg fracture was just as unpredictable.

On April 4, she was enjoying a visit from two favorite nieces — Ms. Aliminosa never married — when she found herself on the floor of her apartment, she said. She had no memory of how she fell.

Ms. Aliminosa has osteoporosis and a history of falling, so she told her relatives not to touch her until the nurses came. She needed a metal rod in her leg and began a slow process of physical rehabilitation. She said the falls were the first thing that made her feel old. “I’d love to be able to have dinner and take a short walk, and I can’t do that,” she said.

Because she was in a full-spectrum medical facility, her care was well coordinated, said Dr. Albert Siu, a professor and chairman of geriatrics and adult development at Mount Sinai.

“For example, osteoporosis is often at root of this,” Dr. Siu said. “But in a three-day hospital stay, addressing osteoporosis is not at the top of everyone’s mind. There it’s dealing with the pain, the complications and the repair of the fractured hip.” Medications for blood pressure or pain might increase dizziness or chance of falls. In mid-July, while Ms. Arnold was angry but relatively mobile, Ms. Aliminosa seemed resigned to a loss of mobility and independence. The prospect weighed heavily on her. When asked if she had considered counseling for depression, she said she did not think she could bear talking about it. “I think as we get older it’s hard to control our emotions,” she said.

Patients’ pessimism can be self-fulfilling, because they may not walk to the extent they can. “Their stride becomes shorter,” Dr. Morrison said. “They don’t use their lungs.”

Dr. Gray-Miceli said it was important for doctors and nurses to keep the patient focused on tangible signs of progress, “so she can say: ‘Today I got up by the side of the chair and took five steps. Yesterday I only took four steps.’ ”

Ms. Aliminosa began a physical therapy regimen to build strength in her legs and upper body and improve her gait. With improvement she gained a sense of optimism and control over her body.

She said the depression returned from time to time, as did the fear of falling again. But she said: “The thought that I’m getting better has helped a great deal. I try to think so each day, really.”

She smiled; she joked. On a recent morning, she groused amiably about her fitness program, but finished, with no sign of pain or exhaustion. “I’m walking,” she said, “I wouldn’t say to my satisfaction, because I used to be a hiker. I can’t expect that yet, but I’m hoping for it.”

    Once Just a Sign of Aging, Falls Merit Complex Care, NYT, 8.11.2008, http://www.nytimes.com/2008/11/08/us/08falls.html?hp

Hospice Chaplains Take Up Bedside Counseling

October 29, 2008
The New York Times
By PAUL VITELLO

Some of the hospice patients talk about their impending deaths, or about God. Most just talk about what people always talk about — unfinished business and unanswered questions: regrets over firing an employee 50 years ago; the pet no one has yet promised to adopt; feeling sick to death of being sick yet not ready to die. About Bach. “How did he dream up that music?” one woman asks.

Listening to final inquiries like these has long been the domain of a family priest or rabbi. But for a growing number of Americans who do not know a member of the clergy, that bedside auditor is increasingly likely to belong to an emerging professional class known in the hospice world as a pastoral counselor or chaplain, who may or may not be a clergy member.

The encounter with a chaplain can be profound and spiritual, and sometimes religious in a traditional way. More and more, though, ministering to the terminally ill in hospice care is likely to be nonsectarian, or even secular.

In the quarter-century since Medicare and some private insurers began picking up the bill for hospice care, it has become a common recourse for the terminally ill. With doctors, nurses, social workers and ample supplies of pain medication dispatched to their homes or nursing facilities in the final weeks and months, about 1.3 million Americans died last year in hospice care.

Spiritual counseling has always been an optional part of the service. But recently, the proportion of patients choosing to receive it, and the number of new chaplains entering the field to meet the need, have risen sharply.

Chaplain services in New York City have nearly doubled since 2004: About 65 percent of the city’s 4,000 hospice patients accept visits from chaplains today, compared with about 35 percent four years ago, according to the two major hospice providers, the Visiting Nurse Service of New York and Continuum Hospice Care.

Nationwide, a study released two weeks ago by the National Center for Health Statistics of the Centers for Disease Control set the proportion of patients accepting a chaplain’s care at 72 percent in one sampling, as compared with the 59 percent another group found in 2000.

The new demand has contributed to a steep rise in the number of chaplains of all kinds, said Josephine Schrader, executive director of the Association for Professional Chaplains, the largest certification body in the country. The increase includes traditional chaplains like those who serve police and fire departments, but the vast majority of recruits in the last 10 years — an estimated 3,000 chaplains, representing a 50 percent jump, she said — are working in hospice care.

They are in some ways a different breed. “The new chaplain culture is more professional and secular,” Ms. Schrader said, and “more adaptable” in approach.

When a Greenwich Village woman named Nathalie said, “None of this stuff, please,” making the sign of the cross to admonish the Protestant chaplain sitting on the edge of her bed one morning last month, the chaplain’s laughter toppled the stacks of bills arranged beside her. “So we talk again about the birds?” he asked, referring to the scene outside her window.

The same chaplain, the Rev. Kei Okada, would hold hands and pray to Jesus with another patient later that day.

In the hospice idiom, the job of the chaplain is to make dying easier. In a way that perhaps only Americans would understand, some chaplains refer to what they do as fostering a more “successful” experience — by whatever definition of success can be negotiated in the final hours between a dying person and a compassionate stranger.

Health care and religion experts cite several reasons for the new pastoral model: a growing consensus in the medical world that spiritual care comforts terminal patients; the shortage of clergy, especially priests; a decline in traditional worship; and the apparently unchanged need most people have near the end of life to make sense of existence.

“What this is not about is ‘people getting more spiritual or religious,’ ” said the Rev. George Handzo, vice president of the Health Care Chaplaincy, a nonprofit group that manages pastoral care programs at 18 hospitals in the New York area. “It’s about a shift in the way people are meeting their spiritual needs.”

Some chaplains are ordained clerics, some not, though almost all undergo training in giving spiritual counsel to that growing segment of the population that describes itself in polls as feeling connected to a higher power but not an organized faith. “The ones with a family priest, they’re not calling us,” said Vincent Corso, the pastoral care director for the Visiting Nurse Service.

During the four months that a hospice chaplain has visited Dr. Bertram Schaffner, a 95-year-old psychiatrist, at his Central Park South apartment, the word “god” has come up only when discussing the doctor’s collection of Hindu figurines of household deities. Dr. Schaffner told his chaplain, the Rev. Hajime Issan Koyama, a Buddhist monk, that he wanted help in understanding “why I’m still living at this age, and what I should be doing.”

Karen Gilbert, a 56-year-old writer, mother of two and self-described polytheist, received help from the same chaplain, Mr. Issan, in accommodating her wish that her body remain undisturbed after her death to allow for a period of protective prayers, in accordance with Buddhist principles of reincarnation.

Ms. Gilbert endured sometimes overwhelming pain from spreading colon cancer, and suffered the guilt many terminal patients feel about leaving their families. Yet she told Mr. Issan one warm September evening in her Lower East Side apartment that one of the hardest tasks in her final months was admitting to her circle of friends that “I pray to a god.” She died on Sept. 29.

As a reporter accompanied five chaplains around New York over several weeks, they and their patients sometimes spoke in specifically religious terms, but more often employed the everyday language of pleasure and pain: about regrets, loneliness, conflicts unresolved with relatives living and dead; about dogs, movies and people they loved, the meaning of dreams, the TV show “Dancing With the Stars.”

Visiting one patient after another, 15 or 20 a week, the pastors usually seemed sure-footed in their improvised mission. Their tenacious interaction with mortality, often without the shield of sacramental ritual, frequently recalled the work of the town doctor in Camus’s book “The Plague,” who defines the good man as “the man who has the fewest lapses of attention.”

The chaplains listen, mainly; and sometimes, like jazz musicians, pick up themes and try to bring them to new levels.

“I talked to my mother yesterday,” said Robert, an 83-year-old man with Alzheimer’s, whose mother died in the 1960s.

“How was she?” said the chaplain, Tom Grannell. “You haven’t talked to her in a while.”

“Pretty good,” said Robert. “She agrees with my father: I’m laying here too long. Time to get back to work.”

“Your mother always believed in you,” said the chaplain.

“Yes, she did,” said Robert.

Because their services are aimed at a diverse population, and because of the federal dollars usually involved, hospice providers forbid counselors to proselytize, and require them to undergo training in accepting all patients’ beliefs.

So, when Robert, who is Jewish, asked Mr. Grannell to pray with him the other day, Mr. Grannell, a former Roman Catholic priest, pulled from his pocket a pamphlet published by the Central Synagogue in Manhattan.

“I’m not Jewish, you know,” he wryly noted as he turned the pages looking for his place. Then he read a prayer, “We praise you, oh God, healer of the sick,” speaking in the phonetic Hebrew provided in the brochure.

Visits often seemed uneventful, with long minutes of silent hand-holding. But an ordinary conversation could suddenly turn sharp.

“How are you?” asked Mr. Okada, visiting a man in his 70s, a terminal cancer patient, in his downtown apartment.

The man removed the oxygen prong from his nostrils and replied slowly: “What do you mean by that? What is there to say? I am not well.” He added, with a fist tightly clenched under his chin: “I am not getting well. I have no hope.”

Mr. Okada did not speak, but maintained earnest eye contact with the man for many minutes. Outside, afterward, he said his patient’s greatest challenge would be the “letting go of this cerebral concept of meaninglessness, of nothingness.”

The silent partner in the visits is the underlying rage of many dying people. It sometimes issues from behind clenched teeth, or explodes in the sudden tearing away of intravenous tubes and catheters.

“It’s been two years,” said the distraught wife of a man who lay dying in the next room in an apartment near Canal Street one bright morning. “He fought so hard. He didn’t tell his friends. He didn’t want people feeling sorry for him.” He was 59, and died the next day.

As Mr. Okada huddled inside with the man’s doctor and nurse, the wife unspooled his last months: “He kept saying how sorry he was for leaving me and the kids, for the trips we would never take. He loved his life.” After two years in and out of hospitals, he had refused to undergo more treatment.

An hour later, when the patient fell asleep under sedation, and his wife greeted a stream of relatives at the door, Mr. Okada left, walking past the hubbub of Canal Street commerce on the way to his next appointment.

As he hurried along, checking phone messages, scanning a subway map, he was asked if the daily encounter with other people’s deaths was ever too much. He paused, and said a chaplain’s own distress and sense of vulnerability to death were, in a way, part of the job. “It is my first bond with my patient,” he said.

In the best of worlds, he said, a relationship based on that helps a patient make peace.

“But many times, this never happens,” he said. “We are there to be there. That is the point. It is my job to stay when there is no answer.”

    Hospice Chaplains Take Up Bedside Counseling, NYT, 29.10.2008, http://www.nytimes.com/2008/10/29/nyregion/29hospice.html?hp

In ‘Sweetie’ and ‘Dear,’ a Hurt for the Elderly

October 7, 2008
The New York Times
By JOHN LELAND

Professionals call it elderspeak, the sweetly belittling form of address that has always rankled older people: the doctor who talks to their child rather than to them about their health; the store clerk who assumes that an older person does not know how to work a computer, or needs to be addressed slowly or in a loud voice. Then there are those who address any elderly person as “dear.”

“People think they’re being nice,” said Elvira Nagle, 83, of Dublin, Calif., “but when I hear it, it raises my hackles.”

Now studies are finding that the insults can have health consequences, especially if people mutely accept the attitudes behind them, said Becca Levy, an associate professor of epidemiology and psychology at Yale University, who studies the health effects of such messages on elderly people.

“Those little insults can lead to more negative images of aging,” Dr. Levy said. “And those who have more negative images of aging have worse functional health over time, including lower rates of survival.”

In a long-term survey of 660 people over age 50 in a small Ohio town, published in 2002, Dr. Levy and her fellow researchers found that those who had positive perceptions of aging lived an average of 7.5 years longer, a bigger increase than that associated with exercising or not smoking. The findings held up even when the researchers controlled for differences in the participants’ health conditions.

In her forthcoming study, Dr. Levy found that older people exposed to negative images of aging, including words like “forgetful,” “feeble” and “shaky,” performed significantly worse on memory and balance tests; in previous experiments, they also showed higher levels of stress.

Despite such research, the worst offenders are often health care workers, said Kristine Williams, a nurse gerontologist and associate professor at the University of Kansas School of Nursing.

To study the effects of elderspeak on people with mild to moderate dementia, Dr. Williams and a team of researchers videotaped interactions in a nursing home between 20 residents and staff members. They found that when nurses used phrases like “good girl” or “How are we feeling?” patients were more aggressive and less cooperative or receptive to care. If addressed as infants, some showed their irritation by grimacing, screaming or refusing to do what staff members asked of them.

The researchers, who will publish their findings in The American Journal of Alzheimer’s Disease and Other Dementias, concluded that elderspeak sent a message that the patient was incompetent and “begins a negative downward spiral for older persons, who react with decreased self-esteem, depression, withdrawal and the assumption of dependent behaviors.”

Dr. Williams said health care workers often thought that using words like “dear” or “sweetie” conveyed that they cared and made them easier to understand. “But they don’t realize the implications,” she said, “that it’s also giving messages to older adults that they’re incompetent.”

“The main task for a person with Alzheimer’s is to maintain a sense of self or personhood,” Dr. Williams said. “If you know you’re losing your cognitive abilities and trying to maintain your personhood, and someone talks to you like a baby, it’s upsetting to you.”

She added that patients who reacted aggressively against elderspeak might receive less care.

For people without cognitive problems, elderspeak can sometimes make them livid. When Sarah Plummer’s pharmacy changed her monthly prescription for cancer drugs from a vial to a contraption she could not open, she said, the pharmacist explained that the packaging was intended to help her remember her daily dose.

“I exploded,” Ms. Plummer wrote to a New York Times blog, The New Old Age, which asked readers about how they were treated in their daily life.

“Who says I don’t take my medicine as prescribed?” wrote Ms. Plummer, 61, who lives in Champaign, Ill. “I am alive right now because I take these pills! What am I supposed to do? Hold it with vice grips and cut it with a hack saw?’”

She added, “I believed my dignity and integrity were being assaulted.”

Health care workers are often not trained to avoid elderspeak, said Vicki Rosebrook, the executive director of the Macklin Intergenerational Institute in Findlay, Ohio, a combined facility for elderly people and children that is part of a retirement community.

Dr. Rosebrook said that even in her facility, “we have 300 elders who are ‘sweetie’d’ here. Our kids talk to elders with more respect than some of our professional care providers.”

She said she considered elderspeak a form of bullying. “It’s talking down to them,” she said. “We do it to children so well. And it’s natural for the sandwich generation, since they address children that way.”

Not all older people object to being called sweetie or dear, and some, like Jan Rowell, 61, of West Linn, Ore., say they appreciate the underlying warmth. “We’re all reaching across the chasm,” Ms. Rowell said. “If someone calls us sweetie or honey, it’s not diminishing us; it’s just their way to connect, in a positive way.”

She added, “What would reinforce negative stereotypes is the idea that old people are filled with pet peeves, taking offense at innocent attempts to be friendly.”

But Ellen Kirschman, 68, a police psychologist in Northern California, said she objected to people calling her “young lady,” which she called “mocking and disingenuous.” She added: “As I get older, I don’t want to be recognized for my age. I want to be recognized for my accomplishments, for my wisdom.”

To avoid stereotyping, Ms. Kirschman said, she often sprinkles her conversation with profanities when she is among people who do not know her. “That makes them think, This is someone to be reckoned with,” she said. “A little sharpness seems to help.”

Bea Howard, 77, a retired teacher in Berkeley, Calif., said she objected less to the ways people addressed her than to their ignoring her altogether. At recent meals with a younger friend, Ms. Howard said, the restaurant’s staff spoke only to the friend.

“They ask my friend, ‘How are you; how are you feeling?’ just turning on the charm to my partner,” Ms. Howard said. “Then they ask for my order. I say: ‘I feel you’re ignoring me; I’m at this table, too.’ And they immediately deny it. They say, no, not at all. And they may not even know they’re doing it.”

Dr. Levy of Yale said that even among professionals, there appeared to be little movement to reduce elderspeak. Words like “dear,” she said, have a life of their own. “It’s harder to change,” Dr. Levy said, “because people spend so much of their lives observing it without having a stake in it, not realizing it’s belittling to call someone that.”

In the meantime, people who are offended might do well to follow the advice of Warren Cassell of Portland, Ore., who said it irritated him when “teenage store clerks and about 95 percent of the rest of society” called him by his first name. “It’s the faux familiarity,” said Mr. Cassell, 78.

But he mostly shrugs it off, he said. “I’m irked by it, but I can’t think about it that much,” he said. “There are too many more important things to think about.”

    In ‘Sweetie’ and ‘Dear,’ a Hurt for the Elderly, NYT, 7.10.2008, http://www.nytimes.com/2008/10/07/us/07aging.html?hp

In Strangers,

Centenarian Finds Literary Lifeline

August 1, 2008
The New York Times
By SARAH KRAMER

Stephanie Sandleben, a yoga instructor with tattoos on each shoulder, just finished Chapter 19 of Tina Brown’s biography of Diana, Princess of Wales. Sara Nolan, a 28-year-old graduate student, is 30 pages into a Rumer Godden novel. Mark Kalinowsky, 48 and a real estate broker, has long since stopped reading; he just comes to chat.

These three disparate characters are part of a ragtag crew that cycles through the worn one-bedroom Murray Hill walk-up where Elizabeth Goodyear, who recently celebrated her 101st birthday, is confined after two knee operations. A lifelong lover of books, Ms. Goodyear lost her sight about four years ago, but in its place has acquired a roster of readers who stop by regularly, bringing with them dogs, gifts from their international travels and offerings of dark chocolate, the elixir she has savored daily since she was 3.

“Usually there’s something going on here,” Ms. Goodyear observed the other day during Ms. Sandleben’s weekly visit. “It’s strange. You’d think if you got to be 101, nothing much would happen. But it does.”

It started with a neighbor two generations younger, who once asked Ms. Goodyear to watch her bags while she ran back upstairs to fetch a bow and arrows for a trip to Maine.

As Ms. Goodyear grew more frail, the neighbor, a yoga instructor named Alison West, started stopping by to kiss her goodnight each evening. On learning that Ms. Goodyear had outlived her savings, Ms. West raised money to pay for her rent-controlled apartment and part of her home health aide’s wages. Then, about five years ago, she posted a sign seeking readers at yoga studios downtown and sent out an e-mail message that was forwarded and forwarded again.

“Liz has no family at all, and all her old friends have died, but she remains eternally positive and cheerful and loves to have people come by to read to her or talk about life, politics, travel — or anything else,” the message read. “She also loves good chocolate!”

Reading to the blind or the elderly is hardly novel. In New York City, two well-established programs, Lighthouse International and Visions/Services for the Blind and Visually Impaired, have hundreds of volunteers who make home visits or read to clients at their offices and in senior centers. The National Federation of the Blind provides a free telephone service through which people can hear articles from more than 200 newspapers and magazines, and the Jewish Guild for the Blind offers a similar program using special radios.

But the casual, organic way in which this particular group came together around Ms. Goodyear is a window into the way New York can be a small town, the way strangers become a community, the way books, reading and, especially, stories bind people together.

“I remember looking forward to seeing you, but also looking forward to hearing what’s happening next in the book,” Ms. Sandleben, the 30-year-old tattooed yoga instructor, told Ms. Goodyear the other day. “I was relieved when you told me that I was the only person reading the story because I didn’t want to miss out on anything.”

Rebecca Feldman was one of the first to visit Ms. Goodyear, and has since married, become a nurse and enrolled in graduate school to become a midwife. “When I first started visiting, I was afraid she’d be dead the next time I came,” said Ms. Feldman, 31, who is eight months pregnant and plans to soon bring a new baby to meet Ms. Goodyear. “When I tell people about her, I say I have this 101-year-old friend. I don’t think of it as volunteering anymore.”

Ms. Goodyear was born in 1907, a premature twin delivered at home in, as she said, “a suburb of Philadelphia whose name I cannot remember.” (Her twin, who weighed just a pound, died within an hour of birth.) On doctor’s orders, she said, she was placed in a bureau drawer with hot water bottles and fed “whiskey and cream” via medicine dropper.

She came to New York in 1928, seeking a stage career, but said that after six months at the American Academy of Dramatic Arts, “they told me I had poise, personality and good looks but no acting ability.” Instead, Ms. Goodyear had a variety of jobs, including assisting the lighting director for the New York City Ballet and theater press agents. In between, she wrote or collaborated on 20 plays — including two, “Widow’s Walk” and “The Painted Wagon,” that made it to the stage — and saw many more, the titles of which she ticks off, alphabetically, in her mind to stave off loneliness and boredom.

After a brief marriage and an ectopic pregnancy, Ms. Goodyear moved to the Murray Hill walk-up in 1961, when the rent was $69. “Everything was red,” she said, laughing at the memory of asking a co-worker to repaint for her. “The windowsills, the walls, the hall, the doors, everything.”

She has taken dance lessons from Martha Graham, had drinks with Duke Ellington, spent a couple of hours with George Balanchine and his cats, and accompanied Gypsy Rose Lee, actress and burlesque entertainer, on a game show. One visitor recalled listening to Ms. Goodyear’s stories and then racing home to Google unfamiliar characters.

“I think I only remember the amusing things; I don’t remember any depressing things,” Ms. Goodyear said in an interview. “I think I just put them out of my mind. I know everybody has things that they want to forget, but I don’t even have to forget. I just don’t remember.”

Ms. Goodyear now has an aide from 9 a.m. to 5 p.m. to help bathe, move and feed her. Her only medications are a monthly shot of vitamin B12 and one daily Tylenol her doctor prescribed because, as she put it, “I guess I have to do something.” Because she can no longer leave her apartment without an ambulette, her doctor makes house calls — once a year.

“He says he has to worry about his younger patients,” Ms. Sandleben said.

Ms. Goodyear may have a glass eye and some teeth missing, but she can recite detailed plotlines from books she read 60 years ago.

A couple of weeks after her 101st birthday, her refrigerator contained five bottles of Champagne and dark chocolate in truffle and bar forms. Birthday cards from her 100th were strung across a wall of the living room, above the plastic-covered table holding the beloved books the volunteers-turned-friends have been reading — many are novels by Rumer Godden, a 20th-century British writer whom Ms. Goodyear adores.

Glamour photos of Ms. Goodyear from the 1920s sit on the television. Four decades of bound copies of Theatre World line the hallway shelves. In Ms. Goodyear’s bedroom are a hospital bed and a couple of stuffed dogs. A “Do Not Resuscitate” sign is posted by the front door.

Ms. Nolan, the graduate student, started visiting Ms. Goodyear two years ago, but since moving to Colorado last August to study poetry, she calls once a week and reads to her over the phone.

Mr. Kalinowsky, the real estate broker, said he also began visiting Ms. Goodyear two years ago, after both his father and his grandmother died, because he missed being close to people from other generations.

Ms. Sandleben brings Ms. Goodyear chocolates from Costa Rica, Zurich, SoHo. And when she was away in Arizona on Ms. Goodyear’s most recent birthday, she got her whole family on the phone to sing to her.

“I don’t know how I ever managed to do it,” Ms. Goodyear said of her numerous friendships.

“You hook them in,” Ms. Sandleben teased.

“They come,” Ms. Goodyear responded, “and for some reason, they always come back.”

In Strangers, Centenarian Finds Literary Lifeline, NYT, 1.8.2008, http://www.nytimes.com/2008/08/01/nyregion/01read.html

For the Elderly,

Being Heard About Life’s End

May 5, 2008
The New York Times
By JANE GROSS

HANOVER, N.H. — Edie Gieg, 85, strides ahead of people half her age and plays a fast-paced game of tennis. But when it comes to health care, she is a champion of “slow medicine,” an approach that encourages less aggressive — and less costly — care at the end of life.

Grounded in research at the Dartmouth Medical School, slow medicine encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.

Slow medicine, which shares with hospice care the goal of comfort rather than cure, is increasingly available in nursing homes, but for those living at home or in assisted living, a medical scare usually prompts a call to 911, with little opportunity to choose otherwise.

At the end of her husband’s life, Ms. Gieg was spared these extreme options because she lives in Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School that has become a laboratory for the slow medicine movement. At Kendal, it is possible — even routine — for residents to say “No” to hospitalization, tests, surgery, medication or nutrition.

Charley Gieg, 86 at the time, was suffering from a heart problem, an intestinal disorder and the early stages of Alzheimer’s disease when doctors suspected he also had throat cancer.

A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. Ms. Gieg doubted he had the resilience to bounce back. She worried, instead, that such treatments would accelerate his downward trajectory, ushering in a prolonged period of decline and dependence. This is what the Giegs said they feared even more than dying, what some call “death by intensive care.”

Such fears are rarely shared among old people, health care professionals or family members, because etiquette discourages it. But at Kendal — which offers a continuum of care, from independent living apartments to a nursing home — death and dying is central to the conversation from Day 1.

So it was natural for Ms. Gieg to stay in touch with Joanne Sandberg-Cook, a nurse practitioner there, during her husband’s out-of-town consultation.

“I think that it is imperative that none of this be rushed!” Ms. Sandberg-Cook wrote in an e-mail message to Ms. Gieg. The doctor the Giegs had chosen, the nurse explained, “tends to be a ‘do-it-now’ kind of guy.” But the Giegs’ circumstances “demand the time to think about all the what-ifs.”

Ms. Sandberg-Cook asked whether Mr. Gieg would want treatment if he was found to have cancer. If not, why go through a biopsy, which might further weaken his voice? Or risk anesthesia, which could accelerate her husband’s dementia?

“Those are the very questions on my mind, too,” Ms. Gieg replied. The Giegs took their time, opted for no further tests or treatment, and Charley came back to the retirement community to die.

Such decisions are not made lightly, and not without debate, especially in an aging society.

Many in their 80s and 90s — and their boomer children — want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients — the elderly with chronic illnesses — are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age.

Most of that money is spent at certain academic medical centers, which offer the most advanced tests, the newest remedies, the most renowned specialists. According to the Dartmouth Health Atlas, which ranks hospitals on the cost and quantity of medical care to elderly patients, New York University Medical Center in Manhattan, for instance, spends $105,000 on an elderly patient with multiple chronic conditions during the last two years of life; U.C.L.A. Medical Center spends $94,000. By contrast, the Mayo Clinic’s main teaching hospital in Rochester, Minn., spends $53, 432.

The chief medical officer at U.C.L.A., Dr. Tom Rosenthal, said that aggressive treatment for the elderly at acute care hospitals can be “inhumane,” and that once a patient and family were drawn into that system, “it’s really hard to pull back from it.”

“The culture has a built-in bias that everything that can be done will be done,” Dr. Rosenthal said, adding that the pace of a hospital also discourages “real heart-to-heart discussions.”

Beginning that conversation earlier, as they do at Kendal, he said, “sounds like fundamentally the right way to practice.”

That means explaining that elderly people are rarely saved from cardiac arrest by CPR, or advising women with broken hips that they may never walk again, with or without surgery, unless they can stand physical therapy.

“It’s almost an accident when someone gets what they want,” said Dr. Mark B. McClellan, a former administrator of Medicare and now at the Brookings Institution. “Personal control, quality of life and the opportunity to make good decisions is not automatic in our system. We have to do better.”

The term slow medicine was coined by Dr. Dennis McCullough, a Dartmouth geriatrician, Kendal’s founding medical director and author of “My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved One.”

Among the hard truths, he said, is that 9 of 10 people who live into their 80s will wind up unable to take care of themselves, either because of frailty or dementia. “Everyone thinks they’ll be the lucky one, but we can’t go along with that myth,” Dr. McCullough said.

Ms. Sandberg-Cook agrees. “If you’re never again going to live independently or face an indeterminate period in a disabled state, you may have to reorganize your thinking,” she said. “You need to understand what you face, what you most want to avoid and what you most want to happen.”

Kendal begins by asking newcomers whether they want to be resuscitated or go to the hospital and under what circumstances. “They give me an amazingly puzzled look, like ‘Why wouldn’t I?’ “ said Brenda Jordan, Kendal’s second nurse practitioner.

She replies with CPR survival statistics: A 2002 study, published in the journal Heart, found that fewer than 2 percent of people in their 80s and 90s who had been resuscitated for cardiac arrest at home lived for one month. “They about fall out of their chairs when they find out the extent to which we’ll go to let people choose,” Ms. Jordan said.

Kendal, where the average age is 84, is generally not a place where people want heroics. Dr. George Klabaugh, 88, a resident and retired internist, found himself at the center of controversy a few years back when he tried to revive a 93-year-old neighbor who had collapsed from cardiac arrest during a theatrical performance. Dr. Klabaugh, who was unaware that the man had a “Do Not Resuscitate” order, said he regretted his “automatic reaction,” a vestige of a professional training that predisposes most physicians to aggressive care.

Ms. Jordan surveyed Kendal residents and found only one that wanted CPR — Brad Dewey, 92, who dismissed the statistics. “I want them to try anyway,” he said. “Our daughter saved a man on a tennis court. Who’s to say I won’t recover?”

Some of the 400 residents, who pay $120,000 to $400,000 for an entry fee, and monthly rent from $2,000, which includes all health care, pursue no-holds-barred treatment longer than others. One woman, for example, arrived with cardiac and pulmonary disease but was still capable of living in her own apartment. First, she had cataract surgery that left her vision worse. Next, during surgery to replace a worn-out artificial hip, her thigh bone snapped. She spent a year in bed and wound up with blood clots. Then she broke the other leg.

Only then, Ms. Jordan said, did the woman decide to forgo further surgery or hospitalizations. The woman was too ill to be interviewed.

Some of those most in tune with slow medicine are the adult children who watch a parent’s daily decline. Suzanne Brian, for one, was grateful that her father, then 88 and debilitated by congestive heart failure, was able to stop medications to end his life.

“It wasn’t ‘Oh, you have to do this or do that,’ “ Ms. Brian said. “It was my father’s choice. He could have changed his mind at any time. They slowly weaned him from the meds and he was comfortable the whole time. All he wanted was honor and dignity, and that’s what he got.”

For the Elderly, Being Heard About Life’s End,
NYT, 5.5.2008,
http://www.nytimes.com/2008/05/05/health/05slow.html