Category Archives: Elders

Rural Aging: Shaken by her husband’s death, Jane Faller vows to stay on their remote land

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By Erica Curless

Jane Faller is embraced by her longtime friend

Jane Faller is embraced by her longtime friend Deb Anthes after she changed Faller’s arm bandage on Oct. 1 in Republic, Wash. Injured in a fall, Faller’s arm required daily care from Deb, who would visit her as Jane’s husband, Bob Faller, lay in hospice care.

Bob Faller died after a day of fighting and struggling. Naked and fierce, gripped by death’s delirium, he rolled on the floor tearing paper into tiny shreds. He tried to flush his pants down the toilet.

Jane, his wife of 58 years, was alone in their rural Republic house, terrified. Helpless.

When a new day dawned, she called a hospice nurse, who told Jane to increase her husband’s morphine dose to every two hours. Bob eventually settled, slept, and slowly let his body shut down.

Longtime friend Steve Anthes was with Jane as Bob, 79, took his final breath. It was Oct. 19, nearly 18 months after Bob was diagnosed with throat cancer, 18 months of dying slowly in the forests far away from hospitals, tubes and machines. It was the ending he chose.

Now a new struggle begins for Jane. Can this 77-year-old woman live alone in the winter in remote Ferry County with little money and medical bills arriving daily?

A nondescript box containing the ashes of Bob Faller sits atop a hutch he built by hand in his earlier years. “There’s pieces of furniture he built all over the country,” Jane said.

A nondescript box containing the ashes of Bob Faller sits atop a hutch he built by hand in his earlier years. “There’s pieces of furniture he built all over the country,” Jane said.

Relief brings feelings of guilt

“It’s quiet now,” Jane said shortly after her husband’s death. Her voice was strong but soft over the phone, the relief evident.

Yet within an hour, her house filled with people and the chaos of dying’s aftermath. The coroner, friends bearing containers of food, phone calls, decisions.

By 9 p.m., Jane sat in near-darkness on her couch, alone. Murphy the dog slept on the floor near her feet. Bob’s hospital bed was around the corner, empty.

“I feel guilty at feeling so relieved,” she said. “I’m really going to sleep tonight.”

Three months later, Bob’s ashes are in a gray plastic box on a beautiful wooden shelf that he crafted with his own hands years ago. Jane carefully removed the lid, exposing a plastic bag of ash. She put her nose near the bag and took a big sniff. She shrugged. At first she talked to him a lot, lit candles. Not so much now.

Jane’s unsure what she will do with the ashes, other than eventually spread them somewhere in nature. It doesn’t matter right now as snow falls outside the window and each day presents more pressing problems and challenges.

Two weeks ago the weather warmed and snow slid from the roof, burying the deck so she couldn’t open the door. She called for help.

A few weeks before that, the ancient hot water heater leaked at least 25 gallons onto the floor and into the crawl space under the house. She called the local hardware store for the name of a plumber, who inspected the damage and asked for a $400 check to buy a new heater and supplies. The man was gone several hours, long into the evening; Jane panicked. At one point she held her cramping stomach, wrought with stress. But he eventually returned and by 9:30 p.m. had the tank installed and working. She paid another $125 in labor costs and then had to buy a new faucet for the sink. Her hand shook as she wrote the check.

After visiting her daughter in Issaquah, Washington, for Thanksgiving, she returned home and turned on the kitchen light. It crashed from the ceiling.

Jane Faller dons a coat in her mudroom containing canned goods on Wednesday. Everywhere she looks, she sees reminders of her late husband. Jane and Bob canned the goods last summer and they remain stored on a shelf he built for them next to a collection of his favorite hats.

Jane Faller dons a coat in her mudroom containing canned goods on Wednesday. Everywhere she looks, she sees reminders of her late husband. Jane and Bob canned the goods last summer and they remain stored on a shelf he built for them next to a collection of his favorite hats.

Cumulative stress taking its toll

Jane knew living alone would be challenging, but she wasn’t prepared for the reality of it.

A year of stresses have snowballed: Bob’s illness and mental highs and lows. The nasty fall while walking her dog that turned into a three-hour ambulance ride and a weeklong stay in a Spokane hospital. The missed time with her dying husband because of her hospitalization. The nearby forests that erupted in wildfires this summer, the same week Bob started hospice care, forcing them to prepare to evacuate.

Now there’s snow and ice and long, dreary days. After spending months with her arm immobilized in a brace and then in physical therapy, Jane’s arm and hand still hurt. The scars are purple and angry. Her fingers ache.

Jane is timid about walking, although she used to hike miles a day in all weather. She hasn’t resumed her yoga practice. Her legs and feet are achy.

“She’s keeping a good face on it,” said Cherie Gorton of Rural Resources, who checks on Jane at least weekly and recently sat with Jane as she opened piles of medical bills. “I think it’s to the point where she probably needs to get out more. Accept invitations. But I know that is really hard to do.”

Gorton called Jane’s daughter in Issaquah, Cat Kelley, to see if she could help her mother make sense of the mounting medical bills from the hospital stay and ambulance ride. Jane has Medicare, but that only covers a percentage of the bills. She has a few too many dollars in her savings account to qualify for Medicaid. Jane and Bob took out a reverse mortgage that covers their mortgage payment, and she receives Social Security. Her son in North Carolina recently created a GoFundMe account to ask people for donations.

The financial woes weigh heavy on Jane. She doesn’t like owing people. Her kids want her to wait for all the bills to arrive so she knows how much she owes. Then they will figure out a plan.

“It makes me really upset,” Jane said, after a recent trip to the mailbox, which most always contains a bill. “It’s horrible.”

On Oct. 20, the day following Bob’s death, daughter Cat Kelley holds Jane’s healing arm as the two go for a walk on the Fallers’ Republic, Wash., property.

On Oct. 20, the day following Bob’s death, daughter Cat Kelley holds Jane’s healing arm as the two go for a walk on the Fallers’ Republic, Wash., property.

Once estranged, the kids have visited their mom

Jane and Bob chose an adventurous, nomadic life at the cost of not having more than a few thousand dollars in savings. They never thought about getting old, getting sick or having medical expenses.

Yet Jane doesn’t regret their independent lifestyle and her husband’s dreamy, back-to-the-land mentality.

Kelley, Jane’s daughter, said her mom recently told her that’s she’s trying to remember only the good things about her life with Bob.

“That will be stuck in my mind forever,” Kelley said. “I like it.”

The Fallers’ romance with nature, however, hasn’t been embraced by their four living children.

“That’s how she wants to live,” Kelley said recently. “She has something in her that thrives on that.”

All the children have rebelled against their parents’ hippie lifestyle. In subtle ways, they have all alluded to the fact that having Bob as their father wasn’t easy. He was gruff, demanding.

Today all the Faller children are financially conservative, have stable, traditional jobs and live in large houses in the suburbs. They drive nice cars and buy material things.

Kelley, an attorney who no longer practices, proudly has three bathrooms in a big house. It has a generator so she is never without electricity. She said she will never again live like a squatter, as she believes the family did when they homesteaded in Canada and lived in a shack without running water or a toilet and where her mom cooked over an open fire.

The result was something of an estrangement between the children and Bob, and by association, Jane.

Since Bob’s death, three of the children have reconnected, however, jointly visiting their mom in November to help her prepare for winter and sort through Bob’s possessions. Kelley said it’s relieved a lot of family tension.

Before Bob died, one of his grandsons, Bobby, came for a rare visit, to say goodbye and make peace. Afterward, Bob would talk about the visit until his voice gave out. He reiterated the importance of family, even when people don’t agree and view the world differently. Afterward, Bob felt energized, somehow released from his burdens. Perhaps it was that connection he needed, proof that the Faller tenacity lives on.

With that same tenacity, Jane is reaching deep into her adventurous soul and said she intends to stay put on her beloved land. She looks through seed catalogs by the wood stove. Friends are plenty, checking on her, plowing the driveway, helping in any way she needs. This is home.

“I’m staying as long as I can,” she said with her girlish giggle. “We’ll see what happens.”

Jane Faller eats dinner by herself as snow settles outside her home in Republic, Wash., on Tuesday. Her children worry about her making it through the winter, but her friends Steve and Deb Anthes regularly check in on her, and a neighbor plows her driveway. Still, the solitude can be unrelenting. “It’s an empty home,” she said.

Jane Faller eats dinner by herself as snow settles outside her home in Republic, Wash., on Tuesday. Her children worry about her making it through the winter, but her friends Steve and Deb Anthes regularly check in on her, and a neighbor plows her driveway. Still, the solitude can be unrelenting. “It’s an empty home,” she said.

Complete Article HERE!

Negative feelings about aging can affect hearing and memory in older people

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Older adults who have negative feelings about aging also perform less well in tests of hearing and memory when the negative feelings appear to undermine confidence in their ability to hear and remember things.

older-woman-on-bench-looking-sad

Changing how older adults feel about themselves could improve their ability to hear and remember.

This was the finding of the first study to look at associations among three variables in the same group of older adults: views on aging, self-perceptions about one’s hearing and memory ability, and one’s actual performance in those skills.

The study, led by the University of Toronto in Canada, is published in the journal Psychology and Aging.

First author Alison Chasteen is a professor of psychology whose research interests include stereotyping across the lifespan and cognitive processes such as memory and attention in social contexts.

She explains there is a need to understand more about the factors that influence the daily lives of older people:

“People’s feelings about getting older influence their sensory and cognitive functions. Those feelings are often rooted in stereotypes about getting older and comments made by those around them that their hearing and memory are failing.”

The study involved 301 older participants aged from 56-96 who completed a series of tests on hearing and memory, and who also underwent assessments of their views and potential concerns about getting older.

Tests of hearing, memory and perception of ability

First, the participants completed standard hearing tests and performed a series of recall tasks to test their memory.

In the memory tests, they looked at one list of 15 words on a computer screen and listened to a different list of words on headphones. They were then invited to write down as many words as they could recall.

There was also another test where the participants were asked to listen to and repeat a list of five words straight away, and then recall them again after a wait of 5 minutes. This was a test of both hearing and memory.

To assess participants’ perception about their own hearing and memory abilities, the researchers asked them to respond to a series of questions and statements. For example, whether they agreed or disagreed with statements like: “I am good at remembering names,” or “I can easily have a conversation on the phone.”

To assess participants’ views on getting older, the researchers asked them to imagine 15 scenarios and give a score indicating their age-related concerns. For example, one scenario is about being involved in a car accident where it is not clear which driver is at fault. The participants are asked to rate how worried they would be about being blamed because of their age.

The participants were also asked to rate their level of concern about being able to find contentment, being alone as they aged or about losing their independence, or being more forgetful as they got older.

Link is stronger when negative views affect self-confidence

When they analyzed the results, the team found that participants who had negative views about aging – and who believed they had problems with their hearing and memory – also performed less well on tests of those abilities.

“That’s not to say all older adults who demonstrate poor capacities for hearing and memory have negative views of aging,” Prof. Chasteen says, adding:

“It’s not that negative views on aging cause poor performance in some functions, there is simply a strong correlation between the two when a negative view impacts an individual’s confidence in the ability to function.”

This indicates a need to appreciate these broader and wider factors when assessing older people’s cognitive and sensory health, she explains. The perceptions they have about their abilities and functioning and how they feel about getting older should be considered.

Prof. Chasteen suggests older people could benefit from learning how they can influence their own aging experience. This could be done by giving them practical exercises to improve thinking, memory and physical performance and help them cast off stereotypes about aging. She concludes:

“Knowing that changing how older adults feel about themselves could improve their abilities to hear and remember will enable the development of interventions to improve their quality of life.”

Meanwhile, Medical News Today recently reported a study that found home-delivered meals reduce feelings of loneliness in older people who are homebound. The randomly controlled trial concluded that Meals on Wheels goes beyond ensuring nutritional health; it also has a positive impact on the emotional health of older people in need.

Complete Article HERE!

What working in a nursing home taught me about life, death, and America’s cultural values

by Valery Hazanov

nursing home

 

The first thing I noticed when I began working in a nursing home was the smell. It’s everywhere. A mix of detergent and hospital smell and, well, people in nursing homes wear diapers. It’s one of those smells that takes over everything — if you’re not used to it, it’s hard to think about anything else.

Being in the nursing home is tough. People weep and smell and drool. Sometimes you can go on the floor and hear a woman in her 90s scream, “I want Mommy.”

But it’s also ordinary — just people living together: gossiping, daydreaming, reading, watching TV, scratching their back when it itches.

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

For the past eight months I have been working as a psychotherapist with dying patients in nursing homes in New York City. It’s an unusual job for a psychotherapist — and the first one I took after graduating with a PhD in clinical psychology. My colleagues were surprised. “Why not a hospital? Or an outpatient clinic? Do the patients even have a psychiatric diagnosis?”

The short answer is that I wanted to see what death looks and feels like — to learn from it. I hope that I can also help someone feel a little less lonely, a little more (is there a measure to it?) reconciled.

I haven’t gotten used to the smell yet. But I have been thinking a lot about the nursing home and the people who live and die there, and wanted to share what I learned.

1) At the end, only the important things remain

“This is all I have left,” a patient recently told me, pointing to a photograph of himself and his wife.

It made me notice the things people bring to the nursing home. The rooms are usually small, so what people bring is important to them. If they have a family, there will be photos of them (most popular are the photos of grandchildren). There might also be a few cherished books, a get-well-soon card, a painting by a grandchild or a nephew, some clothes, maybe flowers. And that’s about it. The world shrinks in the nursing home, and only a few things remain: things that feel important — like they’re worth fighting for, while we still can.

2) Having a routine is key to happiness

‘m a little lazy. My ideal vacation is doing nothing, maybe on a deserted beach somewhere. I look in terror upon very scheduled, very planned people. Yet I have been noticing that doing nothing rarely fills me with joy, while doing something sometimes does. Hence, the conflict: Should I push myself to do things, or should I go with the flow and do things only when I feel like doing them? Being in a nursing home changed my perspective somewhat: I noticed that all the patients who do well follow a routine. Their routines are different but always involve some structure and internal discipline.

I am working with a 94-year-old woman. She wakes up at 6:30 am every day, makes her bed, goes for a stroll with a walker, eats breakfast, exercises in the “rehabilitation room,” reads, eats lunch, naps, goes for another walk, drinks tea with a friend, eats dinner, and goes to bed. She has a well-defined routine. She pushes herself to do things, some of which are very difficult for her, without asking herself why it is important to do them. And, I think, this is what keeps her alive — her movement, her pushing, is her life.

Observing her, I have been coming to the conclusion that it might be true for all of us. And I often think about her when I am debating whether to go for a run or not, whether to write for a couple more hours or not, whether to finally get up from the couch and clean my apartment or not — she would do it, I know, so maybe I should, too.

3) Old people have the same range of emotions as everyone else

“You are so handsome. Are you married?” is something I hear only in extended-family gatherings and in nursing homes. People flirt with me there all the time. This has nothing to do with their age or health — but rather with whether they are shy. When we see someone who is in his 90s and is all bent and wrinkled and sits in a wheelchair, we might think he doesn’t feel anything except physical pain — especially not any sexual urges. That’s not true.

As long as people live, they feel everything. They feel lust and regret and sadness and joy. And denying that, because of our own discomfort, is one of the worst things we can do to old people.

Patients in nursing home gossip (“Did you know that this nurse is married to the social worker?”), flirt, make jokes, cry, feel helpless, complain of boredom. “What does someone in her 80s talk about?” a colleague asked me. “About the same things,” I replied, “only with more urgency.”

Some people don’t get that, and talk to old people as if they were children. “How are we today, Mr. Goldstein?” I heard someone ask in a high-pitched voice of a former history professor in his 80s, and then without waiting for a response added, “Did we poopie this morning?” Yes, we did poopie this morning. But we also remembered a funny story from last night and thought about death and about our grandchildren and about whether we could sleep with you because your neck looks nice.

4) Old people are invisible in American culture

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

Here’s a picture I see every day: It’s the middle of the day and there is a cooking show or a talk show on, and the host is in her 50s, let’s say, but obviously looks much younger, and her guest is in his 30s or 50s and also looks younger, and they talk in this hyper-enthusiastic voice about how “great!” their dish or their new movie is, or how “sad!” the story they just heard was. Watching them is a room full of pensive people in their 80s and 90s who are not quite sure what all the fuss is about. They don’t see themselves there. They don’t belong there.

I live in Brooklyn, and I rarely see old people around. I rarely see them in Manhattan, either. When I entered the nursing home for the first time I remember thinking that it feels like a prison or a psychiatric institution: full of people who are outside of society, rarely seen on the street. In other cultures, old people are esteemed and valued, and you see them around. In this manic, death-denying culture we live in, there seems to be little place for a melancholic outlook from someone that doesn’t look “young!” and “great!” but might know something about life that we don’t.

There isn’t one Big Truth about life that the patients in the nursing home told me that I can report back; it’s a certain perspective, a combination of all the small things. Things like this, which a patient in her 80s told me while we were looking outside: “Valery, one day you will be my age, God willing, and you will sit here, where I sit now, and you will look out of the window, as I do now. And you want to do that without regret and envy; you want to just look out at the world outside and be okay with not being a part of it anymore.”

5) The only distraction from pain is spiritual

Some people in the nursing home talk about their physical pain all the time; others don’t. They talk about other things instead, and it’s rarely a sign of whether they are in pain or not.

Here’s my theory: If for most of your life you are concerned with the mundane (which, think about it, always involves personal comfort) then when you get old and feel a lot of pain, that’s going to be the only thing you’re going to think about. It’s like a muscle — you developed the mundane muscle and not the other one.

The saddest people I see in the nursing home are childless

And you can’t start developing the spiritual muscle when you’re old. If you didn’t reallycare about anything outside of yourself (like books, or sports, or your brother, or what is a moral life), you’re not going to start when you’re old and in terrible pain. Your terrible pain will be the only thing on your mind.

But if you have developed the spiritual muscle — not me, not my immediate comfort — you’ll be fine; it will work. I have a couple of patients in their 90s who really care about baseball — they worried whether the Mets were going to make the playoffs this year, so they rarely talked about anything else; or a patient who is concerned about the future of the Jewish diaspora and talks about it most of our sessions; or a patient who was worried that not going to a Thanksgiving dinner because of her anxieties about her “inappropriately old” appearance was actually a selfish act that was not fair to her sister. Concerns like these make physical pain more bearable, maybe because they make it less important.

6) If you don’t have kids, getting old is tough

The decision to have kids is personal, and consists of so many factors: financial, medical, moral, and so on. There are no rights or wrongs here, obviously. But when we are really old and drooling and wearing a diaper, and it’s physically unpleasant to look at our wounds or to smell us, the only people who might be there consistently, when we need them, are going to be either paid to do so (which is okay but not ideal) or our children. A dedicated nephew might come from time to time. An old friend will visit.

But chances are that our siblings will be very old by then, and our parents will be dead, which leaves only children to be there when we need it. Think about it when you are considering whether to have children. The saddest people I see in the nursing home are childless.

7) Think about how you want to die

José Arcadio Buendía in One Hundred Years of Solitude dies under a tree in his own backyard. That’s a pretty great death.

People die in different ways in the nursing home. Some with regrets; others in peace. Some cling to the last drops of life; others give way. Some planned their deaths and prepared for them — making their deaths meaningful, not random. A woman in her 90s recently told me, “Trees die standing tall.” This is how she wants to go: standing, not crawling.

I think of death as a tour guide to my life — “Look here; pay attention to this!” the guide tells me. Maybe not the most cheerful one, slightly overweight and irritated, but certainly one who knows a lot and can point to the important things while avoiding the popular, touristy stuff. He can tell me that if I want to die under a tree in my backyard, for example, it might make sense to live in a house with a backyard and a tree. To you, he will say that if you don’t want any extra procedures done to you at the end, it might make sense to talk about it with the people who will eventually make this decision. That if you want to die while hang-gliding over an ocean, then, who knows, maybe that’s also possible.

I think of death as a tour guide to my life — “Look here; pay attention to this!”

My father, who has spent the past 30 years working in an ICU as a cardiologist and has seen many deaths, once told me that if he had to choose, he would choose dying well over living well — the misery of a terrible, regretful death feels worse to him than a misery of a terrible life, but a peaceful death feels like the ultimate reward. I think I am beginning to see his point.

I am 33. Sometimes it feels like a lot — close to the end; sometimes, it doesn’t. Depends on the day, I guess. And like all of us, including the people in the nursing home, I am figuring things out, trying to do my best with the time I have. To not waste it.

Recently, I had a session with a woman in her 90s who has not been feeling well.

“It’s going in a very clear direction,” she told me. “Toward the end.”

“It’s true for all of us,” I replied.

“No, sweetheart. There is a big difference: You have much more time.”

Complete Article HERE!

Deficiencies In End-Of-Life Care Extend Across Ethnicities

By Barbara Feder Ostrov

What kind of care do you want at the end of your life?

elderlyStanford University researchers put that question to members of three major ethnic groups in the San Francisco Bay area and found little variation in their responses.

“There is a common humanity – people want to live as long as they have good quality of life. When it is their time, they want to be consulted so they die in a way that they are respected, and they don’t want their families burdened,” said the study’s lead author, Dr. V.J. Periyakoil, director of the Stanford Palliative Care Education and Training Program and associate director of palliative care services at the VA Palo Alto Health Care Center.

Regardless of ethnicity, however, the researchers found that access to high-quality end-of-life care is often hampered by lack of financial means, poor communication with health providers, cultural mores and family conflicts. The study, involving more than 300 white, Asian and African-American seniors, was published Nov. 18 in the Journal of Palliative Medicine.

Periyakoil, whose earlier research focused on how doctors discuss end-of-life care with patients from different cultures, said physicians often believe that talking about end-of-life care with patients of certain ethnic groups is taboo and that patients and their families are reluctant to have these sensitive conversations. The new study, though small and limited in geographic scope, suggests otherwise. The participants may have been more affluent and better-educated than their counterparts nationwide, given the region’s demographics, Periyakoil noted.indian elder

The researchers interviewed 315 people over 50 at senior centers in Fremont, Palo Alto, San Francisco, San Jose and Walnut Creek. The group included 38 African-Americans, 160 Asian-Americans and 117 Caucasians. Interviews, conducted in English, Burmese, Hindi, Mandarin, Tagalog and Vietnamese, examined participants’ attitudes toward end-of-life care and whether they had experienced barriers to getting quality end-of-life care for relatives or others in their community.

Researchers are still collecting data on Latino participants and plan to publish a separate study on their views, Periyakoil said.

While all of the participants in the study said they valued high-quality end-of-life care, about 60 percent said they had experienced barriers to getting it, most notably financial difficulties and a lack of adequate health insurance. Medicare typically covers only short-term nursing home care and offers hospice benefits to patients whose doctors certify they have six months or less to live and who are willing forgo treatment intended to cure their terminal illness.

white eldersThere were no statistically significant differences among ethnic groups in reporting barriers to care. But participants with less education were more likely to report that their biggest barrier to care was financial. Patients with more education were more likely to cite doctor behaviors that hampered end-of-life communication. And women were more likely than men to cite barriers to care overall, perhaps because they were more likely to be direct caregivers and have more experience with end-of-life needs.

Regardless of ethnicity, patients felt that “doctors were just too busy to initiate [end-of-life] conversations, reluctant to listen to their concerns and questions about EOL decision making, and often gave vague responses, making it difficult for the patient to comprehend their choices and make informed decisions,” the researchers wrote.

An estimated 2.6 million Americans die every year, but how the American health care system handles their last days is problematic across ethnic groups, according to “Dying in America,” a landmark report released in 2014 by the Institute of Medicine. Too many people end up having aggressive treatment that is ineffective and expensive and doesn’t contribute to the patient’s quality of life, the report found. Other research examiningracial gaps in attitudes toward hospice care and other studies has found differences among ethnic and religious groups in how they approach end-of-life decisions.

But people want to talk about it regardless of background, says Dr. Steven Pantilat, a University of California, San Francisco professor of medicine and director of UCSF’s palliative care program, who was not involved in the study.

“What this study tells us is that all of our patients want us to have these conversations,” Pantilat said. “They’re waiting for their doctors to bring it up, to not be rushed, to communicate sensitively.”Asian Senior

A new federal policy may make those conversations easier – and more routine. Starting in January, Medicare will reimburse physicians for discussing end-of-life care. That policy infamously – and incorrectly – was derided as promoting “death panels” during the debate over the Affordable Care Act and a version of it was dropped from the legislation. The counseling will cover what kind of medical care patients want to receive as they approach their last days.

Periyakoil urges patients of all backgrounds to prepare for these conversations, and new planning tools are available in different languages to help. Among them is the Stanford Letter Project, which helps patients write a letter to their doctors about the end-of-life care they do and don’t want in languages including English, Spanish, Mandarin, Vietnamese, Hindi, Urdu, Tagalog and Russian.

In one redacted letter provided by Periyakoil, a woman named Patricia writes: “I do not want my longevity to be more important than my comfort.”

Pantilat advises the doctors he trains that they don’t need deep knowledge of the beliefs of every religion and culture they might encounter, because every patient, of whatever ethnicity, has different goals.

“If we come in with true curiosity, respect and openness, we can learn a lot about how to take care of someone in a sensitive way,” he said. We need to ask: “What do I need to know about your culture and your family to take good care of you?”

Complete Article HERE!

Some Older Patients Are Treated Not Wisely, but Too Much

By Paula Span

older patientsOver many years, the 77-year-old patient has managed to control hisType 2 diabetes. Thanks in part to daily doses of a drug that reduces blood sugar, his glucose level is a very low 6.5 percent.

Like a lot of older people, he copes with multiple medical conditions, including high blood pressure and severe kidney disease. But with four prescription drugs, plus Tylenol forlower back pain, he’s doing reasonably well.

Oh, and he’s a hypothetical example, concocted by researchers at the University of Michigan and the Veterans Affairs Ann Arbor Healthcare System. They sent this fictional case study to primary-care professionals at Veterans Affairs medical centers across the country and asked a series of questions about the man’s treatment.

The researchers believed their nearly 600 respondents — mostly physicians, but also nurse practitioners and physician assistants — would recognize that such a patient risked developing dangerously low blood sugar, called hypoglycemia. But no. About half these professionals said they wouldn’t worry about potential harm from the man’s rigorous treatment regimen.

Evidence is accumulating that older adults with diabetes, hypertension and other conditions should be treated less aggressively than they commonly are. “Deintensification,” the Michigan researchers have named this approach.

As this and another related recent study have shown, not for the first time, getting that message out to practicing physicians has proved difficult.

“In our health care system, we are all more scared of failing to do something than of doing too much,” said Dr. Jeremy Sussman, a primary care physician and research scientist at the Ann Arbor hospital.

Under current guidelines, most older patients with diabetes don’t have to get their blood sugar to rock bottom; a 7.5 or 8 percent blood glucose level (measured as HbA1c, an average of several recent readings) produces the same benefits as very low glucose. Blood pressure readings, too, should be allowed to rise as patients age — up to 150 millimeters of mercury for systolic pressure. The previous goal was to keep it below 140.

There are good reasons to be less vigilant. In older people with diabetes, for instance, maintaining very low blood sugar — often called “tight control” — can do more harm than good. “People can feel fatigued and weak, get cold sweats, feel like they’re going to pass out,” said Dr. Tanner Caverly, lead author of the Michigan survey, published in JAMA Internal Medicine. Thefainting and falls that may result can have devastating consequences.

Further, a widely cited study called Accord, published in 2008 in The New England Journal of Medicine, found that intensive therapy to reduce blood glucose actually resulted in higher mortality.

Yet a large national study by Dr. Sussman and his colleagues, published last month in JAMA Internal Medicine, reveals how rarely deintensification occurs among patients over age 70.

Reviewing Veterans Affairs data on more than 211,000 patients, the researchers found that fewer than 19 percent of those with very low blood pressure had scaled back their medications. Only 27 percent of those with very low blood sugar had done so.

“There’s been a huge effort to ensure that fewer people are undertreated,” Dr. Sussman said. “Now, maybe we’ve crossed the line and too many people are overtreated.”

Examples of both extremes are easy to find.

Among older adults, substantial proportions still don’t take advantage of vaccines, among the simplest of health protections. A third of those over age 65 didn’t get flu shots last season, according to data from the Centers for Disease Control and Prevention. More than 40 percent haven’t been vaccinated against pneumonia, and fewer than a quarter have gotten the shingles vaccine.

But older Americans receive too many colonoscopies and too many mammograms. Last year, a study found that more than half of nursing home residents with advanced dementia, a terminal disease, were receiving drugs of questionable value; about a fifth took statins to lower cholesterol.

Overtreatment, however, rarely brings the sort of hand-wringing that undertreatment does. You might think it would be welcome news that older diabetics can do well with lower doses of medication, and that in some cases they might be able to stop taking glucose-lowering drugs altogether.

Tight control takes great effort, and it makes sense for young and middle-aged people with diabetes. The benefits accrue slowly, over years, so younger patients are more apt to receive them. The young have stronger bones and better balance, so they are less likely to be injured in the falls that too-low blood sugar can cause.

Older, frailer people with lower life expectancy and many additional health problems face different trade-offs.

“As you get older, the benefits go down and the risks go up,” said Dr. Sei Lee, a geriatrician at the University of California, San Francisco, who has written about the subject for years. “What was good for you at 55 might be bad for you at 75.”

As a member of the American Geriatrics Society’s Choosing Wisely panel, Dr. Lee helped draft its recommendation that a 7 to 7.5 percent blood glucose reading is a reasonable goal for healthy seniors. For those with additional health problems and life expectancies of less than 10 years, the panel suggested a 7.5 to 8 percent goal, rising to 8 to 9 percent for those with many medical conditions and few years ahead.

Given all that, it’s disappointing that more primary care providers in the new Veterans Affairs study never thought to tell our fictional 77-year-old that he could afford to let his blood glucose rise a bit, and maybe eat a cookie once in a while. But sometimes patients themselves resist, especially if they have been dutifully monitoring their disease for years.

Dr. Sussman recalled a veteran, about 80, who took pride in the way he’d managed his illness, testing his blood several times a day, injecting insulin, keeping his glucose below 7. He had lost weight with age, however, so Dr. Sussman suggested he stop insulin shots and begin taking the diabetes drug metformin, which comes in pill form.

The man gave it a try. “But he and his wife never lost their discomfort with doing less than they had been,” Dr. Sussman said. The patient went back to the injections.

At least his doctor had pointed out the option and explained the likely benefits. In the new Veterans Affairs study, nearly 30 percent of respondents said they lacked the time to discuss the risks and benefits. About a quarter said they feared that reducing the fictional patient’s medications could make them vulnerable to a lawsuit.

More than 40 percent worried that higher blood glucose would violate their institutions’ performance measures, the report cards doctors get — even though the Department of Veterans Affairs has never specified a target below 7 percent for these patients.

Just the contrary: The department last year announced a National Hypoglycemic Safety Initiative, changing its approach to diabetes management to avoid intensive treatment when it’s not warranted.

Still, older adults who haven’t reassessed their diabetes or blood pressure regimens for years probably should be asking their doctors if they can or should make changes. The doctors, for now, might not raise the subject themselves.

“It’s one thing to find out about something new and exciting and do it,” Dr. Sussman reflected. “It’s harder, emotionally, to look at something you’ve done for a long time and think, maybe this isn’t so good. And stop.”

Complete Article HERE!

All In This Together: Coping With Advanced Illness and Dying as a Family

By: Fred Nelson MSW, RSW

“The moment we heard about Dad’s cancer diagnosis, everything changed in our family. My sister has always been kind of withdrawn. Well, she started to take over. I felt like my own world had ground to a halt; I couldn’t do anything useful. My brother just got busier and busier – totally absorbed in anything as long as it had nothing to do with Dad. Our first family dinner together after we got the news: we were like strangers. We didn’t have a clue how to even talk to each other.”

We all have our own ways of responding to and getting through a difficult situation. Sometimes we can predict pretty well what we will feel and how we and others will react. Sometimes it’s a complete surprise – to ourselves and everyone around us. The fact is that we are all affected – subtly or in a big way – when someone in our family is diagnosed with a serious illness. Our outlook on life can change. Our behavior can change. Our roles can change. Naturally, all of this affects how we come together as a family.

family

 

‘Family’ is whatever it means to you: a parent and kids; a group of siblings and their partners; a multi-generational extended family; a group of friends who have stuck together through good and bad. That part doesn’t matter. What does matter is that every family, however structured or defined, has its own established roles, rules – generally unspoken – and ways of communicating.

Here are some examples of rules, roles and patterns of communication that may occur within a family:

  • Nobody in the family talks about negative feelings. If you’re sad or angry, keep it to yourself.
  • If you have an issue with someone in the family, don’t talk to them directly; speak to Mum and she’ll deal with it.
  • We catch up on what everyone’s doing on Fridays after work.
  • Uncle Bill always mows the lawn and cleans up after a barbecue.
  • Nobody mentions Peter’s first wife, even when their son is visiting.
  • Only Dad can initiate discussions about family vacations.
  • Nobody ever praises a piece of pottery that wasn’t made by Mum.
  • We all congratulate Chris on his game, even when his team loses.
  • If you need to talk to someone about a disappointment in your life, talk to your big brother.
  • Aunt Julie can’t keep a secret.
  • New Year’s dinner is always at Uncle Remy’s – no exceptions.
  • Amanda is always the one who pushes for us to get together to plan our holiday activities.

family2All of this can be thrown up in the air like a deck of cards when someone in the family gets a serious, life-limiting diagnosis. And what happens when the cards come down? The possibilities are endless as family members:

  • deal in their different ways with strong emotions
  • consider how the future might unfold
  • move, willingly or unwillingly, into roles that have been occupied by someone else
  • work within or challenge established ‘rules’ about gatherings and ways of communicating

Even if individual family members stick pretty much to the roles they have occupied in the past, it is very likely that the intensity of the situation will ‘crank up the volume’ on the ways they interact with one another and force old differences to the surface. For instance:

  • I have never been compensated for the fact that Dad took you into the business and not me.
  • Who said this was my job, anyway?
  • Don’t tell me how I should feel!

Caregiving

Eventually, and sometimes right away, a serious, life-limiting illness means caregiving. Directly or indirectly, someone in the family is likely to become responsible for caregiving. The responsibility may be shared, but often it isn’t. And caregiving can be exhausting – emotionally, physically and financially. The emotional rollercoaster can be extreme (sadness to relief to hurt to fulfilment to guilt to satisfaction to tenderness to anger and resentment to just not knowing how to help). Physical challenges can be immense. (Am I ever going to get a good night’s sleep? How do I get him into this wheelchair?) And while many family caregivers will tell you that the experience is not only doable but life-enriching, tensions are inevitable. For instance, if the needs of a seriously ill family member outstrip the ability of a family caregiver to provide appropriate care. Disagreements over the right course of action are common between the main family caregiver and the person who is ill as well as among family members. Add to this mix, intense feelings, new or entrenched patterns of coping, and new roles, and it may be unrealistic to expect smooth sailing.

Decision-makingfamily3

First and foremost, the person who is ill should remain the central decision-maker for as long as he or she chooses or is able to be.  It is also important for the person who is ill to decide who will make decisions on his or her behalf if necessary. Even if a single member of the family becomes chiefly responsible for the care of the family member who is ill, it is likely that other family members, perhaps all of them, will need to be included in some important decisions. Financial decisions are a good example, and people avoid them for a variety of reasons. For instance, a person who is dying may not want to face financial issues because doing so would require a genuine acceptance of his or her condition. Or it might mean confronting some differences in the ways individuals in the family see things.

The best advice from people who have been in this situation is to be practical, honest and straightforward. For example:

  • I know that you want to be in control of your affairs and money as you have always been, but I am concerned about the ‘what-ifs’.
  • If you haven’t made these decisions and completed the paperwork, I worry about us not being able to do what is important for you when you are unable to do so.

Telling people what they should do – someone who is dying or another family member – may lead to resistance and is usually not as effective as speaking for ourselves.  (E.g.You need to do this now vs. I am concerned that…)

In many families, there is a tendency to try to protect one another by avoiding frank conversations. If we talk about it, we will take away all hope. Or If we talk about death, it will happen sooner. Or This is just too hard for him/her to talk about, when in fact it might be truer to say, “This is too hard for me to talk about.  While such reservations are common, they can actually leave all involved (the person who is ill and family members) feeling isolated and that their feelings and concerns are not heard or understood. It can take a lot of emotional energy not to say what needs to be said. In the end, expressing ourselves to one another and going through tough times together can free up energy for something more worthwhile and help us feel more connected to one another.

Anger

family4Family members are not always on the same page at the best of times. In times of stress, disagreements, conflicts and anger are much more common. Anger often comes from a place of frustration, being misunderstood, being afraid or not being heard or acknowledged. It is a natural reaction to the threat of loss or loss itself. Hurt, fear and feelings of guilt can contribute to anger. Anger often surfaces when we feel insecure or vulnerable.

When everyone is under stress due to a serious illness and an intense caregiving situation, try not to take anger personally. If you can, consider – with as much compassion as you can find within yourself – where the anger is coming from and what feelings or experiences it might be rooted in. Remember that all relationships have a history and that past grievances commonly surface during times of stress. Counselling support can help provide a fresh perspective and help family member talk to and better understand each other, although there certainly are times when differences are too entrenched and individuals are too wounded to resolve issues.

A wise person once said, ‘At any given moment, human beings are doing the best they can.’ The bottom line is knowing what each of us can and cannot take responsibility for, and finding a way to be okay with that.

Conflict

The presence of conflict doesn’t mean there’s something wrong with you or your family, although it certainly can feel that way. When conflict is making you feel like you or your family are failing, think again of all of the changes that are in play – changes in feelings, roles, family ‘rules’, situations, finances – and the stresses that everyone involved is enduring. In fact, it would be surprising if there were no conflict.

Again, with as much compassion for yourself and others as you can muster, step back, take a breath and consider everything this particular conflict is rooted in. Consider all the places that you and your family members find support – community, professional, through the health care system, friends and family – and figure out how to access them. Consider what you can do and what is simply beyond your control. Make sure to treat yourself with kindness and respect.

After all, you and your family members are dealing with the countless changes and challenges that come with caregiving and loss. There are no perfect solutions. But like other human beings, you are doing the best you can. Looking back on this intense time, you may, like many other families, be surprised by your resourcefulness and resilience.

Complete Article HERE!

Learning to Die

By MARGOT MIFFLIN

My mother taught me many things, including, in the end, how to die.

Her death went well, I told the few friends who I knew would understand my meaning: She was not in pain, she was conscious until the day before she died, she was at home, my sister and I were with her. It was a peak experience, revelatory and meaningful — something I wouldn’t have traded for anything — except her life.

No one tells you how discreetly death can make its catch, or how languorously. It rolls in like a low wave: It’s moving, and it’s not; she’s there, afloat, and she’s not; it simultaneously sluices through her and tugs her in its tide for hours, until she’s silently dispelled by its force.

I understand, now, why death has so often been personified in art — it’s maddeningly anonymous. Sylvia Plath’s Death is two people: the one who never looks up, and the one who smiles and smokes. But her suitors are too sexy and menacing to represent the remote, impassive, mundane death I witnessed. Jacques Brel’s Death is a spinster, a princess and a witch — all impossible: the experience of death could never be so monumentally solitary with this crowd of enablers on the sidelines.

My mother hallucinated lightly in the week before she died, and her morphine visions assured me that her death — or at least what followed it — would be O.K. “I wish I were a tree,” she said one day, which seemed reasonable in light of both her love of forests and the nature of her illness, multiple myeloma, which was whittling her bones away. She wanted to be solid again. She wanted to stand up and be rooted. A few days later she said brightly, “My father’s waiting for me.” She was ready to go.

On the night she died, five or 10 minutes after she stopped breathing, I held her in my arms and she was still there. An hour later, she was not. But she hadn’t been taken. I’m certain she had left, and seeing her go gave me the courage to think that I could do this myself, without fear.

I practiced in a dream. I was running along the rooftops of Lower Manhattan when I hit a sheer drop of 20 or 30 stories, and began to fall. I knew I would die, so I gave myself a quick admonition. First: Relax. It’s a long way down, and you could have a hell of an experience before this ends if you don’t tense up and miss it. Second: Stay horizontal so you get a clean hit and don’t make a huge mess. Third: On the ground, before you die, explain that this was an accident, not a suicide. People who love you deserve to know.

I hit the ground and found myself running again — scrambling around trying to get back to a building where I’d left a newly purchased book I was desperate to retrieve. I’d died and gone to — a bookstore. Life went on.

A month after her death, my mother was still dying. When I went to her apartment to sort her mail and pack up her things, she was there — a little less each week, but still. She walked in and flopped down on the full length of the couch with one outstretched hand brushing the floor, a Kleenex in her sleeve, surveying the vast empire of magazines on her coffee table. She appeared in my dreams, allowing me to hug her for a preposterously long time, though we both knew she was dead. This is how I held on to her for a few years — when I played it right. One night in a dream, for example, I spoke to her at length by phone, but when I asked her where she was, she sounded irritable and hedged, and the dream dissolved. So I learned not to ask.

And now, four years have passed. A gap has widened between what happened before her death and what’s happened since, and she’s slipped into it. They’re all gone now: the ghost mother, reclining on the couch; the missing person, dissembling on the phone; and the absent presence lingering in the woods where her scattered ashes have settled into the underbrush, buried under seasons of snow and wildflowers. And yet it feels as if I just met this radical new mother who did the unthinkable — the renegade who journeyed deep into the wilds of a terminal illness, shape-shifted magically before my eyes, and took off. It was an artless, innocent betrayal, based on a misunderstanding: I had simply thought she would live forever.

Complete Article HERE!