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Philadelphia Inquirer, Sunday, March 28, 2015, Front Page story:
Don Eisenhauer leads residents in a hymn at the Sanatoga Center in Pottstown. Sanatoga is among the long-term care facilities addressing death more openly. BRADLEY C BOWER / For The Inquirer
A LIVING ENDING
Nursing homes are being more open, for residents and staff, about death.
By Stacey Burling INQUIRER STAFF WRITER
Even in nursing homes, where hundreds of thousands of people die each year, death has long been a touchy subject.
Administrators thought they were doing residents and staff a psychological favor by whisking dead bodies out back doors and carrying on as usual. It seemed too depressing to think about how many people were leaving and how many would follow.
Attitudes are beginning to change, though, thanks to a greater emphasis on bringing meaning and individual choice — in other words, more life — to those last years in long-term care.
Rather than assuming they knew best, nursing-home leaders also started asking residents like Mary Grace Dippolito how they feel.
Dippolito, 74, attended this month’s memorial service for people who had died — there were three this time — at her nursing home, Sanatoga Center in Pottstown.
Dippolito, who has been at Sanatoga a year, says she finds such events uplifting. It’s important, she said, to say out loud that she and her neighbors matter to one another. She likes to be with the group, nodding together at shared memories.
“Such things do happen to all of us,” she said, “and it’s nice to acknowledge: ‘I knew you. I was happy to know you. Now I’m going to say goodbye.’ ”
She also finds it comforting to know that the group will talk about her one day. “I would like them to acknowledge that they knew me,” she said.
Sanatoga is among a growing number of long-term care facilities that are addressing death a little more openly.
Some display plaques in common areas to memorialize the newly departed. Some facilities encourage residents and staff to write messages to grieving families. Some place a rose on the empty bed. Staff and residents may flank the stretcher as a body is wheeled out — by the front door. Some ring a “prayer bell” when a resident dies. A few even give staff members closest to the deceased a day off.
At Spring House Estates, a continuing-care retirement community in Lower Gwynedd, there are 30 to 40 deaths a year in the 96-bed skilled nursing facility.
Families sitting vigil are given snacks, poetry, and care items such as lip balm. A little angel hangs from the door. When a resident dies, the body is draped with a white memory quilt made by independent-living residents. Doors stay open as the body is taken out. Once the funeral-home employees leave, the quilt tops the empty bed.
“This is a part of life and we honor that,” executive director Donna Thompson said.
Sanatoga is likely to be the last home for about half of its 130 residents. The other half come for limited rehabilitation stays. Last year, 21 residents died there. At any given time, eight to 10 nearing the end of life are receiving hospice services.
Executive administrator Scott Centak said that, historically, nursing homes thought of death as something that primarily affectedfamilies, not other residents or staff.
“ ‘Mary passed away. Mary’s family is grieving,’ ” he said of the old perspective. “But what about Mary’s friends here? What about the staff here?”
1.6 million Americans
Nursing homes and assisted-living facilities are home to about 1.6 million Americans. How much attitudes about dying have really changed there is hard to know. Industry leaders claim wide buy-in. Academic experts, though, still see wide variation.
“I’m not sure there’s been a huge conversion,” said Susan Miller, agerontologist and epidemiologist at Brown University. Still, she said, awareness of the need to mourn has increased in recent years.
Sarah Matas, resident services administrator at Barclay Friends, a West Chester continuing-care community, recalls being a hospice social worker at a Delaware nursing home in the 1990s. As she sat with a patient who had just died, “someone took that person’s name out of the slot in the door,” she said, her voice still angry. “They literally weren’t cold in their bed yet.”
Such a hush-hush approach may have been well-intended, but residents were left to wonder what had happened to their friends and, more important, what would happen to them.
Kathrin Boerner, a psychologist at the University of Massachusetts Boston, said residents find it “between ridiculous and offensive” when deaths are not acknowledged. The implication is that their lives don’t matter much, that “that’s how you’re going to be wheeled out, while nobody’s looking.”
A thorny issue
It’s easy to see why the issue is thorny. Many residents have dementia. How much can they understand? What’s the point in upsetting them?
Then there are privacy regulations, which some blame for one of the most disturbing scenarios. A resident gets sick and disappears. Did she die? Is she in the hospital? Did she move? No one knows.
Barclay Friends addressed that problem by asking residents if they want neighbors to be informed if something happens to them.
Some experts worry that constant exposure to death is harder for staff than for residents. Boerner said many employees receive very little training in how death occurs or how to handle it. “The staff is utterly unprepared to deal with it,” she said.
Even small steps, like giving aides who worked closely with a dead patient the news by phone before they come to work and see the empty bed, she said, make workers feel better.
“If you want the staff that cares for that person to be caring and compassionate, you have to ask yourself what does the staff need to be able to do this,” she said.
Michael Lepore, a sociologist at Research Triangle Institute, said nursing homes’ reluctance to talk about death reflected societal attitudes.
“I don’t think it’s fair,” he said, “to blame nursing homes for not offering a greater awareness of death and dying when it’s certainly a microcosm of our society, which also doesn’t do that.”
Hospice drives changes
Industry experts say changes are being driven by the growing presence of hospice care in longterm care facilities and by the culture-change movement, which promotes homelike, individualized care. It emphasizes what patients want and can contribute in their last years.
Genesis Healthcare, which operates Sanatoga, has a four-year-old program it calls Adding Life to Years. It reminds staff of the long lives full of family, work, and passions that residents had before they had to leave their homes.
ACTS Retirement-Life Communities, which owns Spring House, has its own hospice program, which many of its independent-living residents serve as volunteers.
Marian Schurz, corporate director of home and community services, said residents want to hear about hospice and end-of-life planning. She hopes to hold meetings modeled on “death cafes,” trendy social gatherings where people talk about death and mortality.
“They are hungry. They want to talk about it,” Schurz said. “They have questions.”
Sanatoga residents chose wind as the theme for the March memorial service. It was fitting for a breezy St. Patrick’s Day. The wind, said Chaplain Don Eisenhauer, is messy, unpredictable, uncontrollable.
“It’s areminder that we don’t really have a say over when our loved ones are going to die,” he told the group. “We face the moment and we deal with whatever comes. … It helps us to make the most of the days we have.”
About half the crowd stayed as recreation director Johanna Applegate, acting on a resident’s suggestion, displayed a sample black armband residents and staff might wear to show they were mourning. They liked it. She updated plans to make a pale pink patchwork quilt that will drape the bodies of residents as they leave the building. She added that Mary Ann Luft, vice president of the resident council, will visit the roommates and families of residents who die.
Luft, 67, who was disabled at birth and has lived at Sanatoga about three years, has pushed for more openness when her friends are nearing death. “I was pretty close to a couple of them and I would have loved to be able to say my goodbyes when they were here in the flesh,” she said.
She wants her only memorial service to be at Sanatoga.
“I’m prepared, yes. I have the Lord as my savior and I know that I’m going home with him,” she said. “My family knows I loved them. I have apologized to everyone I might have hurt, so I’m ready to go.”
Some experts say the elderly can educate others about coping with life’s end.
“These old people, 80 and beyond, have alot to teach us about how to maintain resilience, because a lot of them are very good at dealing with loss,” said Renee Shield, a Brown University anthropologist.
Sanatoga’s Centak said that residents are asking for more opportunities to express their wishes, now that they know the staff is listening. The rituals around death are, for the first time, a true collaboration.
“Isn’t that a legacy in itself?” Applegate asked. sburling@phillynews.com
Don Eisenhauer leads residents in a hymn at the Sanatoga Center in Pottstown. Sanatoga is among the long-term care facilities addressing death more openly. BRADLEY C BOWER / For The Inquirer
Peggy Baumann reacts to the singing of a hymn during a memorial service at the Sanatoga Center.
Staff member Stacy Omar hugs a resident during a memorial service at the center. An administrator said residents were asking for more opportunities to express their wishes, now that they know staff is listening.
Johanna Applegate, recreation director at Sanatoga Center, with residents at a memorial service. Such services are apart of a more open attitude to death at some nursing homes. BRADLEY C BOWER / For The Inquirer
Ellen Dengler holds the program at a memorial service. Death “is a part of life, and we honor that,” an official at one nursing home said.
How a widow traced a long path back toward optimism
ENLARGE
After losing her husband, Carolyn Moor, center, with daughters Mackensey, left, and Meagan, right, had to learn how to be optimistic again. Now she works to help other widows.PHOTO: EDWARD LINSMIER FOR THE WALL STREET JOURNAL
It took Carolyn Moor more than seven years to figure that out.
By her own accounts, Ms. Moor had it all. She and her husband, an architect named Chad, had two little girls, their own business and a house they designed and built in Orlando. On Valentine’s Day 2000, when they were in their mid-30s, they talked over a romantic dinner about what would come next.
While they were driving home from dinner, a car struck theirs. Her husband died from injuries. In one moment, Ms. Moor’s world was upended.
“Somewhere along the way I had come to believe that life was going to be easy,” she says. “Then suddenly, you lose someone you love. You think you will never feel life again.”
ENLARGE
Carolyn Moor and her husband Chad on their wedding day.PHOTO: EDWARD LINSMIER FOR THE WALL STREET JOURNAL
Everyone experiences loss and setbacks. We are diagnosed with serious illnesses and injured in accidents. We lose homes, jobs and loved ones. Yet even the most traumatized often manage—over time and with help—to slowly piece together their lives. It is a painful and rarely linear process, but it can strengthen people in unexpected ways. Many are able to transcend their hurt by providing help to others, and in doing so give direction to their waylaid lives.
Often people don’t know what they can endure until they face an unthinkable loss, says Steven Southwick, a psychiatry professor at Yale University. “Most of us are a lot more resilient than we think,” says Mr. Southwick, co-author with Dennis Charney, of “Resilience: The Science of Mastering Life’s Greatest Challenges.” We bend but don’t break, he says, like a green twig that bows in a gale but doesn’t snap. In spite of harsh weather and conditions, the twig grows, sometimes in a slightly different direction.
He and Mr. Charney came up with 10 traits of people who survived war, assault and disasters, as well as less traumatic events, and ultimately thrived. These people tend to be optimistic—thinking things will work out—and are able to accept what can’t be changed and focus on what can be, he says. They recognize that even though they didn’t have a choice in their loss, they are responsible for their own happiness.
ENLARGE
A chapter of the Modern Widows Club met recently at First United Methodist Church in Orlando. The Modern Widows Club has 10 chapters nationwide, with about 3,000 members.PHOTO: EDWARD LINSMIER FOR THE WALL STREET JOURNAL
Although genetics plays a role in being resilient, it isn’t a huge one. Resilience can be learned and enhanced, he says. For example, people can develop a more optimistic view by cultivating friendships with positive people and challenging negative thoughts.
“When you change the way you are viewing things, it has a pretty big impact on all sorts of things,” Mr. Southwick says. It isn’t easy to do, he acknowledges.
When her husband died, Ms. Moor had no family around to help with her two daughters, ages 2 and 4, and the couple’s interior architecture and design business. She had left her childhood home near Bryant, Ark., years earlier, and Chad’s family was in Colorado. Memories of the accident haunted her. She suffered panic attacks every time she heard a siren or saw a police car, and could no longer sleep in the bedroom she had shared with Chad.
Her strong Southern Baptist roots offered little comfort. Instead, she cursed the God she had always trusted.
“I thought my allotment of happiness had been used up and that the rest of life was one of duty,” she says. She went through the motions, getting her daughters out of bed, dressing and feeding them, and volunteered at a grief group called New Hope For Kids. “I put on a good face in public,” she says. Inside, she says, she was a wreck, not sure of what to do with her life. She met other widows at the grief group but didn’t know anyone who could show her how to move forward.
“If there is no one to remind you that optimism still exists and why, it’s really easy to let it slip through your fingers,” she says.
In 2006, six years after her husband died, she met Rabbi Shmuley Boteach. At the time, Rabbi Boteach, a prominent Orthodox Jewish rabbi and self-help author, was host of “Shalom in the Home,” a reality show that aired on TLC and featured him advising struggling families. He was filming a segment on grief in Orlando, and New Hope for Kids suggested he talk to Ms. Moor, among others. She and her daughters, Mackensey and Meagan, appeared on his show, and they became friends.
WAYS TO ENHANCE OPTIMISM
When something bad happens:
Take one day at a time. Now there may be only pain, but good things will return.
Keep the adverse event or situation within its limits; don’t let it pervade other areas of your life.
Notice what is good, such as acts of kindness by others.
When something good happens:
Give yourself credit for whatever part you played in making it happen.
Feel grateful for whatever part you didn’t play in it—the efforts of others, or just good luck.
Get the most out of it: Think of ways to expand the scope and duration of the positive event.
Source: ‘Resilience. The Science of Mastering Life’s Greatest Challenges’ By Steven M. Southwick and Dennis S. Charney
Ms. Moor remembers, in particular, one point in the show when Rabbi Boteach told her she had a choice. “You either choose life when death comes to your door or you choose something else,” she recalls him saying. It was one sentence, yet it touched her. She realized she couldn’t control what happened—fate made its move—but to some degree she could control her response.
Rabbi Boteach asked her to look at the choices she was making to see if they were the best for her and daughters. One stood out. Every year on Valentine’s Day, the anniversary of her husband’s death, she opened a memory box. Inside, along with her husband’s watch and architectural drawings, was a stained sweater that she had worn the night of the accident. It was, she reasoned, a way to honor her husband by never forgetting the pain of that day.
Doing so, though, left her—and her daughters—focused on Chad’s tragic end, rather than their happy times together.
With the show, a spate of publicity raised Ms. Moor’s profile. She appeared on Oprah Winfrey’s TV show during a segment on troubled families in which Rabbi Boteach counseled several sets of parents. Other widows began contacting her, looking to her for advice. She was overwhelmed, questioning her ability to help them and struggling with her own doubts that she had choices and deserved happiness. She was afraid of dating, fearing it would alienate her in-laws, and of selling things connected with Chad—their sports car and the house they had built. She went through five exhausting months of therapy, examining her fears and learning how to reframe her thinking.
“I had two little girls looking up to me,” she says. “I needed to find happiness and love again so they could have that in their lives.” Over time, she regained hope and began to move forward. She sold her house and bought a smaller one, giving her some added savings and security. She took her daughters on vacation to Maui and learned to surf. She began dating.
In 2010, while developing a website for her design business, she hired and befriended a young, newly widowed photographer. Over coffee at Starbucks, they decided to form the Modern Widows Club. Ms. Moor emailed local widows who had contacted her after the TV appearances, inviting them to her house on a Thursday evening.
Two showed up at that first meeting in 2011. Since then, 350 widows have attended Orlando meetings. The Modern Widows Club, a nonprofit, has grown to 10 chapters nationwide, with about 3,000 members.
They meet monthly in leaders’ homes or a local church. Leaders, all widowed at least two years, act as role models. The groups discuss their fears of being alone for the rest of their lives and practical issues about such as when to sell a house, start dating or remove a wedding ring. By seeing that others have quit jobs they hated, traveled alone and written books, they feel empowered.
Annette Vogel Little helps lead the chapter in the small town of Janesville, Wis. Ms. Little’s husband, Steve, suffered from depression and took his own life in 2005. At the time, she was 46 and their three children, ages 11, 15 and 16.
Ms. Little drew strength from her large family and her faith and, grateful for both, wanted to serve others. She volunteered at a homeless shelter but felt she would have greater impact mentoring other widows by sharing her story of what she came through and how. “I had healed enough and had enough to offer other people. I have come through a lot of losses and I’m more than OK,” says Ms. Little. “I have much more depth now.”
Searching the Internet, she found the Modern Widows website and contacted Ms. Moor about starting a chapter. Ms. Moor was struck by Ms. Little’s kindness and strength, traits she seeks in all chapter leaders. The first Janesville meeting was held in January 2014. About 20 widows ranging in age from 25 to 75 attended, some newly widowed and others widowed for more than a decade.
The widows in the group help each other realize that they can regain optimism, something that Ms. Moor spent years coming to believe. In turn and in time, they teach others. “The chain keeps going,” Ms. Moor says.
