Category: Society and Culture

Covering news of religion, ideology, values, literature and trends regarding end of life issues.

Helping Chicago’s Chinese American senior community

Many Chinese American seniors in Chicago suffer psychological distress, physical limitations and financial hardships, according to The Pine Report, a new study about the health and well-being of older adults.

Image: Wikimedia Commons
Image: China Town, Chicago via Wikimedia Commons

The Chinese American Service League, a nonprofit providing in-home aid and day services to more than 900 Chicago seniors, partnered with Rush University Medical Center for the report. From 2010 to 2013, researchers conducted face-to-face interviews with more than 3,000 seniors between 60 to 105 years old.

“Seniors are our biggest focus,” said CASL President Bernarda Wong, who helped form the organization 34 years ago with her friend and colleague, Esther Wong.

More than 75 percent of the community served at the CASL speaks and reads Chinese only at home, according to the report. Another 20 percent prefers Chinese. The league devotes resources to new immigrants who do not understand English. ”Sometimes the elderly come in with federal documents and mail they cannot understand, so we help them,” said Bernarda Wong.

More than half of the community’s seniors suffer from one or more limitations to carrying out instrumental activities of daily life, such as managing money, preparing meals or housework. ”We train volunteers to do household chores and go into the homes of the seniors” Bernarda Wong said. About two-thirds of the seniors served suffer from more than one chronic illness.

But despite the league’s vast assistance to thousands of Chinese Americans, many of them still sidestep discussions about end of life and advance care planning, said Debra Chow, an elderly service social worker with the nonprofit’s in-home care services. “It is too taboo for them. End of life is something very scary to all of us.”

“That is not a topic that we have touched on a large scale,” Bernarda Wong said, although noting the growing need for such discussions. “We are eager to work with Life Matters Media, to plan a seminar and allow our clients to ask questions and soak in information,” Chow said.

“Many seniors do not want to bother their families, so they keep it to themselves,” Bernarda Wong said.

More from Life Matters Media:

Pain should not be a symptom of aging, says Rainbow Hospice Medical Director

POLST Illinois moves forward

Vermont votes to allow “Death with Dignity”

Many seniors still unfamiliar with social media

Image: Wikimedia Commons
Image: Wikimedia Commons

While social media is second nature to millions of Americans, many seniors are still learning the basics of popular Web sites such as Facebook, Skype and Twitter. However, older adults are the fastest growing segment of the online community, said the North Shore Senior Center’s George Lowman at the 15th Annual Aging Well Conference in Evanston, IL.

“Social media is a brain game, it keeps seniors connected,” said Lowman, who built his first computer while in high school during the 1950s. Now, some 20 million Americans 65 and older are “online,” and 10 million seniors use social media.

Lowman spent much of his presentation warning seniors about the dangers of social media. “Seniors grew up in a world that was very private. They did not share information the way their grandkids do,” said Lowman. He suggests careful consideration of privacy agreements on sites such as Facebook and Google, because they mine personal data from users to sell targeted ads.

“Unfortunately, you will be hacked. It is not if, you will,” said Lowman. While seniors should not be afraid of social media, “since it’s not contagious,” seniors should be aware of scams and never give out their online passwords to “friends” over the Web.

Sometimes Lowman’s lecture seemed like a high school assembly. “Always remember that if you take a picture with a drink in your hand, it will end up on Facebook. Put down the drink,” Lowman told more than a dozen seniors. “Think of what your religious leaders and friends would think of your pictures.” The audience dutifully took notes.

Overall, the benefits from social media outweigh the risks, Lowman argued, since it is an easy and fun way to interact with grandkids, nieces and nephews who now view letters, phone calls and even email as “outdated.”

More from Life Matters Media:

Buehler Enabling Garden, an outlet for aged and ill

Being a friend to someone sick: Advice from author Letty Cottin Pogrebin

Unreasonable optimism among physicians common during end of life care

Buehler Enabling Garden, an outlet for aged and ill

The Buehler Enabling Garden at the Chicago Botanic Garden provides individuals of all life stages a place to explore nature and reflect.

About twenty miles north from the Chicago Loop, the Enabling Garden is just one portion of the nearly 400 acre living botanic museum. While the other reserves and bigger gardens require lots of walking and even some climbing, the Enabling Garden caters to seniors and to the ill.

Raised potted plant
Raised potted plant

“We try to make this area as accessible as possible,” said Julie McCaffrey, the garden’s media relations manager. Most of the flower beds are raised to both provide easy access to visitors in wheelchairs and so that the elderly do not have to bend down to smell the flowers. Hanging baskets can also be lowered by pulleys.

Less obvious accommodations include smooth paving for wheelchairs, vertical wall gardens and miniature raised water fountains for “sensory enjoyment.”

Guided rails help blind visitors plant
Guided rails help blind visitors feel where to plant

“Many of these same ideas can be adapted in home gardens to create enabling gardens for a lifetime of easy, enjoyable gardening,” the garden Web site states. McCaffrey said some of the hospice patients who visit are inspired to garden at home. “It gives them something to take care of,” she said.

The Buehler Enabling Garden
The Buehler Enabling Garden

Hospice Dreams, a nonprofit that grants wishes to some hospice patients, recently sent an individual to the Enabling Garden. “It is so therapeutic for them to interact with plants and be with family,” McCaffrey said. “It would be great if hospitals started recommending this garden to their patients.”

More from Life Matters Media:

Death over dinner? There’s an appetite for it

National Institute of Medicine recommends improving end of life care

Google “Death Manager”: A will for your digital data

Bed sores: New technology decreases occurrence

Being a friend to someone sick: Advice from author Letty Cottin Pogrebin

Empathy + action = kindness

Book

Feminist writer Letty Cottin Pogrebin discussed her new book,  at Chicago’s Tribune Tower Monday, as part of the Printer’s Row literary series.

Pogrebin, a breast cancer survivor, spent most of her presentation telling the emotionally-charged room of fans, caregivers and journalists what not to say or do when friends first learn of a serious or terminal diagnosis.

“The thing that bothered me the most was the gossip,” Pogrebin said, recounting her own diagnosis at age 70.

Upon learning of her cancer, Pogrebin told only her family and 12 “uber-pals.” Humans have concentric circles of intimacy, Pogrebin said, and she told only those she completely trusted.

However, word of her diagnosis eventually reached Pogrebin’s outer circle of friends and acquaintances. Someone let the secret slip.

Pogrebin soon became inundated with concerned calls from acquaintances and colleagues. With each conversation, Pogrebin felt forced to once again explain her diagnosis, and in turn, she relived painful emotions. ”My advice: Tell everyone so you can tell them all at once.” If she could rewind and do it a different way, Pogrebin would have sent a mass email to both explain her diagnosis and ask not to be disturbed.

Furthermore, Pogrebin insisted these phrases should never be uttered to a sick friend:

“Oh my God!”

“How are you?”

“You look great!”

“It’s God’s plan.”

These phrases, she said, can sound both fake and cliche. “Do you really want to know how I am? Did I not look good before?” Pogrebin laughed.

Instead, she advised that it may be more prudent to say something such like, “I’m so sad for you” or “I will be here for you, the moment you need it, and I mean it.”

Sometimes, Pogrebin said, family and friends visit just to make themselves feel better. “But what about the patient?” The sick person has to entertain the guests, get dressed, explain their most traumatic moments, and wonder if the person really even cares to know the full story. She suggested friends call before a visit, or plan a future date for dinner- once the patient starts feeling better.

Read the Chicago Tribune’s review of ”How to be a Friend to a Friend Who’s Sick”

More from the Life Matters Media Newswire:

Keeping the dead among us

Life Matters Media participates in “Great Challenges”: Caregiver crises

Life Matters Media participates in “Great Challenges”: End of Life Care

Keeping the dead among us

One Indonesian culture could offer new perspective on the end of life in America

Image: Toraja burial site, Wikimedia Commons
Image: Toraja burial site, Wikimedia Commons

When members of the Toraja ethnic group of eastern Indonesia tell you the dead live among them, they don’t mean that figuratively.

Corpses of loved ones often remain in households for up to two years until a traditional funeral can be held, and in the interim, family members symbolically feed and bathe the body of the deceased.

Kelli Swazey, a cultural anthropologist at Indonesia’s Gadjah Mada University and wife of an ethnic Torajan, told an audience gathered at the TEDMED 2013 conference in Washington, D.C. that a careful examination of her husband’s native culture has reshaped her views on death and could be helpful in allaying common American fears surrounding the end of life.

“Death is the most visible and remarkable aspect of the Torajan landscape,” Swazey says, describing the typical sight of one or more corpses in a Torajan home.

Funerals in this culture are elaborate, often stretching days or weeks. Because they are so expensive to carry out, the average family may need months or years to save the funds needed for such a ritual. In the time prior to funerals, bodies are placed in special rooms of a family’s household, symbolic of that family’s identity.

Swazey says this period of Torajan transition serves as a gentle way to come to terms with loss and to properly grieve.

“They socially recognize and culturally express what many of us feel to be true,” Swazey argues. “Our relationships with certain humans and their impact on our social reality does not cease with death.”

Image: Toraja burial site, Wikimedia Commons
Image: Toraja burial site, Wikimedia Commons

As Americans see death as an unquestionable reality, Torajans view it as a part of a larger social genesis.  Dying is a process for the entire Torajan community, Swazey says, not solely a biological definition. Examining death this way removes some discomfort towards the physical realities of dying.

Because the bodies of the dead are revered and attended to for such lengthy periods, death is not only honored, but normalized in the Torajan culture, she says. Prolonging life in the face of debilitating illness is unheard of in this culture. Torajans view human life as having a pre-set length of thread that should be allowed to unspool to its natural end.

When illness strikes in our own western culture, Swayze says “we decide whether to stretch that thread of life based on emotional ties between us.”

As global citizens, she says we can’t afford to devalue knowledge because it emerges from a place so foreign and one that most Americans don’t understand. A cultural shift in perspective could be what is needed to transform end of life care and the frequent use of heroic, costly and often futile treatments for the dying.

“If we entertain and value other knowledge about life, including views on death, it can change the way we die, but more importantly, it could transform the way we live.”

-Randi Belisomo

More from the Life Matters Media Newswire:

“Death denying” culture unfortunate result of medical innovation, says physician on Healthcare Decisions Day

Preparing for the dementia tsunami, a TEDMED discussion

Choosing not to eat and drink: Some terminally ill hasten death

Life Matters Media participates in “Great Challenges”: Caregiver crises

Life Matters Media is proud to participate in the TEDMED “Great Challenges” program, sponsored by the Robert Wood Johnson Foundation. The caregiver crisis has been designated as one of the twenty “Great Challenges” in health and medicine. The program’s mission is not to solve the caregiver crisis, but to provide unbiased, inclusive viewpoints of the challenges from a multidisciplinary perspective.

At the conclusion of TEDMED 2013, Life Matters Media was pleased to take part in “Great Challenges Day,” held at George Washington University, in which participants explored how storytelling and narrative framework can be used to gain a deeper understanding of the caregiver crisis. Storytelling is at the core of what our organization aims to do as we prepare to launch our full digital platform in the coming weeks, and the “Great Challenges” program shares our belief that greater understanding in health care and decision making stem from sharing true narratives- not data.

Below is the “Discovery Doodle” by graphic recorder Robbie Short, depicting some of the challenges offered by program participants in coming to grips with the caregiver crisis.

"Discovery Doodle"
“Discovery Doodle”

An estimated 44 million people provide care for the elderly, disabled, sick and injured. Caregivers have few tools and few support systems as they carry out their tasks, and they receive minimal, if any, training for these responsibilities.

Here are some of the contributing factors that make the caregiver crisis such a pervasive health and social problem, as offered by “Great Challenges” team members:

-Lack of recognition by payers, providers, employers and regulatory agencies on the value and financial impact family caregivers bring the health care system. (Cheri Lattimer, Consulting Management Innovators)

-Emotional isolation and lack of support (paid and unpaid) to help a family caregiver balance his or her life. (Suzanne Geffen Mintz, National Family Caregivers Association)

-The graying of the U.S. – 10,000 Americans turn 65 every day (Alan Blaustein, CarePlanners)

-Randi Belisomo

More from the Life Matters Media Newswire:

Hope or Denial in the Face of Death?

Preparing for the dementia tsunami, a TEDMED discussion

Death over dinner? There’s an appetite for it

Life Matters Media participates in “Great Challenges”: End of Life Care

Life Matters Media is proud to participate in the TEDMED “Great Challenges” program, sponsored by the Robert Wood Johnson Foundation. End of life care has been designated as one of the twenty “Great Challenges” in health and medicine. The program’s mission is not to solve the problems surrounding end of life care, but to provide unbiased, inclusive viewpoints of the challenges from a multidisciplinary perspective.

At the conclusion of TEDMED 2013, Life Matters Media was pleased to take part in “Great Challenges Day,” held at George Washington University, in which participants explored how storytelling and narrative framework can be used to gain a deeper understanding of end of life care. Storytelling is at the core of what our organization aims to do as we prepare to launch our full digital platform in the coming weeks, and the “Great Challenges” program shares our belief that greater understanding in health care and decision making can stem from sharing true narratives- not data.

Below is the “Discovery Doodle” by graphic recorder Leah Silverman, depicting some of the challenges offered by program participants in coming to grips with end of life care.

"Discovery doodle"
“Discovery Doodle”

Modern medicine has extended the life expectancy of many terminally ill Americans, but in turn, that prolongation of life can result in more intensive care and cost.  In 2010, Medicare paid $55 billion for physician and hospital bills during the last two months of patient’s lives. Going forward in its work, the “Great Challenges” program believes that quality end of life care requires balancing doctor, family and patient input, and that making end of life decisions can relieve physical and emotional tolls on patients and their loved ones. Life Matters Media shares this belief.

Here are some of the contributing factors that make end of life care such a pervasive medical and social problem, as offered by “Great Challenges” team members:

-Deaths usually occur in hospitals or special care units, often with only medical personnel in attendance. Unfamiliarity with death seems to exaggerate fear of it. (Barbara Coombs Lee, Compassion and Choices)

-The Scarlett O’Hara Syndrome, or “I can’t think about this today; I will think about it tomorrow.” Many find it culturally inappropriate to go about advance planning or advanced health care directives, and others find it too emotionally difficult. (Bruce Jennings, Center for Humans and Nature)

-Linking end of life care with right to life movements are often erroneously linked. The term “death panels” often elicits an inaccurate and emotionally charged portrayal of the process involved in helping people die naturally and with comfort and dignity. (Jennie Chin Hansen, American Geriatrics Society)

-There is a lack of accountability in our health care system, with most measures task-based rather than patient-centered. There are no adequate quality measures to examine care of the dying (Joan Teno, Center for Gerontology and Health Care Research)

For more on the “Great Challenges”: www.tedmed.com/greatchallenges

-Randi Belisomo

More from the Life Matters Media Newswire:

Death over dinner? There’s an appetite for it

Preparing for the dementia tsunami, a TEDMED discussion

POLST Illinois moves forward

The future of caregiving could be a talking dog

Pet avatars offered as a solution to caregiver crisis at TEDMED 

The thought of virtual pets evoke 1990s toy memories for millennials, but a new incarnation of such may help stave off dementia in their grandparents- and provide them  enriching social connections.

GeriJoy companions, virtual “talking dogs,” are now providing pet therapy, personal companionship and computer services to the elderly, and peace of mind to their long-distance loved ones.

“We’ve transformed what it is like to be a caregiver,” said GeriJoy CEO Victor Wang, as he presented his tablet-based software at the TEDMED 2013 conference in Washington, D.C.

Wang says he was inspired to create the real-time avatars as a result of his family’s experience emigrating from Taiwan- and his grandmother’s subsequent deep depression as she remained behind, alone in their home country. His parents could not afford to employ the services of a caregiver, so they lived in fear that his grandmother would harm herself, while they were rendered helpless.

“We can help increase seniors’ self-worth and improve their mental health,” Wang says, noting that more than 800,000 Americans suffering from Alzheimer’s disease live alone, and that more than half of those lack a caregiver. These numbers are expected to exponentially increase in the next two decades, and the current four-to-one ratio of able-bodied caregivers per senior is expected to drop to one-to-one.

“There are not enough real people in the U.S.,” says Wang, and he sees his GeriJoy companions as a solution to not only providing seniors with emotional interaction, but capable of updating scattered family members with the condition and overall well-being of their loved one.

Each avatar is monitored 24 hours a day by GeriJoy staff who are available to engage each virtual pet in dialogue with its senior. Relatives can use the company’s website to upload photos and updates for seniors to view and talk about with their companion. GeriJoy staff log the content of each interaction online, so that family can see how their loved one is faring.

Wang predicts that his software will soon be helpful in detecting senior abuse and accidents, as well as have the capacity to provide daily medication and activity reminders.

Wang says GeriJoy is changing the traditional definition of caregiver. “It’s about the joy, conversations, friendships and health that comes from all of this and the relationships that we build.”

To learn more: www.gerijoy.com

-Randi Belisomo

More from the Life Matters Media Newswire:

Death over dinner? There’s an appetite for it

Preparing for the dementia tsunami, a TEDMED discussion

POLST Illinois moves forward

Hope or denial in the face of death?

Pulitzer Prize winner recounts personal love story

Bennett 8.57.34 AM
Bennett family picture

What medical experts call denial, Amanda Bennett calls hope.

The Pulitzer Prize winning journalist and caregiver to her husband, Chinese historian Terrence Foley, sought to reframe the role of denial in the face of terminal illness during her presentation at the TEDMED 2013 conference in Washington, D.C.

“Denial isn’t even close to a strong enough word to describe what those of us facing the death of our loved ones go through,” says Bennett, whose recent book, The Cost of Hope, outlines the story of her quarter century romance with Foley, with whom she traveled the world and had two children.

Despite his cancer diagnosis, Foley thrived personally- traveling with his family to multiple continents, coaching Little League and even earning his Ph.D. in his 60s.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go.”

Mysteriously, Bennett says, he continued to surpass all expectations. Meanwhile, she buried herself in internet research in search of a cure that was not to be found.

His health dramatically declined in December 2007, and as Foley began to spit blood during what would be his last stay in intensive care, his doctors asked Bennett what she wanted them to do.

The couple had advance directives in place, directives that ordered doctors to do nothing if no further hope was to be had.

“Keep him alive if you can,” she told his physicians. After all, Foley had repeatedly dodged all dire predictions for the past seven years and had recently started a new regimen of experimental therapy. Bennett continued to hang on to the slightest of indications that he could continue to live.

As her husband’s health worsened over the next week, she grew more resolute. “We believed if we were smart enough, strong enough, brave enough and worked hard enough, we could keep him from dying forever,” Bennett recalls.

But Foley died December 14th, 2007, and Bennett says she never said goodbye.

“We pushed the fight right over the edge, and I never got the chance to say to him, ‘hey buddy, it was a hell of a ride,’ ” Bennett remembers, noting in retrospect, that no wife- no matter how hard she tries- can stop the bravest of husbands from dying when it is his time.

Hope

Bennett would not consider hospice, because to her it meant defeat.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go,” Bennett says, suggesting there are many “noble” paths available for curing disease, but no such culturally “noble” path to die.

If she had been able to shift her perspective, she says, perhaps watching Foley die would have been easier on them both. That perspective could be broadened: from fear of hopelessness at the end of life to, instead, repeated victories in the face of cancer, a lengthy battle, and then a graceful retreat in death.

“Not even the greatest general defeats every foe,” Bennett says, and such a framework of a triumphant, manly crusade through illness into death would have been a much more workable mindset than hope- and the subsequent lack of it.

Death, she argues, is not the enemy, but she knows most think it is.

“I believed I could keep him from dying, and I would be embarrassed to say that if I hadn’t met so many people who have felt the same way.”

For more of Bennett’s story: thecostofhope.com

-Randi Belisomo

More from the Life Matters Media Newswire:

Preparing for the dementia tsunami, a TEDMED discussion

Death over dinner? There’s an appetite for it

End of life questions from Catholics tackled at National Healthcare Decisions Day symposium