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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.
When Monique Sindler was dying in her bed in Paris in 2006, Sophie Calle, her daughter and the renowned French conceptual artist, set up a video camera and began taping. The artist, 60, has explained that her reason for the camera was that she didn’t want to be out of the room when the moment of death came. She wanted to hear her mother’s last word and see her last breath, but she had heard that the dying often wait until nobody is around to let go.
“I was afraid I wouldn’t be there if she had a last thing to tell me,” she said this spring in a Skype interview from her home near Paris, where she has mounted a taxidermy giraffe head on the wall and named it after her mother. “The camera made me feel restful because I could sleep in the other room or go out and buy food. When I wasn’t there, I was still there.”
While Ms. Calle’s career often involves invading the privacy of others — copying someone’s lost address book and calling people in it and then publishing their remarks in a newspaper; posing as a chambermaid to photograph the messes left by guests; and exhibiting a breakup email from a romantic partner to elicit commentary from various female experts — she had never made her mother the sole subject of one of her voyeuristic projects.
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“Room 43 — February 28th,” made by Sophie Calle posing as a chambermaid to photograph the messes left by guests.CreditCourtesy Sophie Calle; Paula Cooper Gallery, New York; Galerie Perrotin/ Artists Rights Society (ARS) New York
“Finally,” Ms. Calle recalled her mother saying when she set up the camera, suggesting to her daughter and to anyone who came by and questioned it, that she was pleased that her turn as a subject had finally come, even if it was at the very end.
Visitors to the Episcopal Church of the Heavenly Rest, at Fifth Avenue and 90th Street, can read about this at Ms. Calle’s coming installation. It is called “Rachel, Monique” for her mother, who used both names at various times, and it opens in collaboration with the Paula Cooper Gallery andGalerie Perrotin on Friday. The installation includes a life-size video projection of her mother in her deathbed and a sign that lists the last music she heard and last word she spoke, which was “souci,” meaning “worry.” And in a clergy stall, viewers can hear a recording of a familiar voice reading excerpts from Ms. Calle’s mother’s diary, translated into English: It is Kim Cattrall, of “Sex and the City,” who had offered her services after she heard Ms. Calle in a marathon 30-hour reading of the diaries last summer in Avignon.
“My mother loved Kim Cattrall’s character in the television show,” Ms. Calle said.
Inside the chapel of the 88-year-old church last Monday, she was casually dressed and overseeing the installation. “A little to the right please,” she politely told two helpers as they shifted a long, framed list of her mother’s last doings against a Gothic-style window sill. As if it were a bouquet, she held a white book of photographs and passages about her mother to be placed among the red prayer books in the racks.
“Take out the curtains,” she said about one window. She moved a silver crucifix on the altar. She looked at the pews near the back. “Let’s put the grave on the floor here,” she said.
If she wasn’t emotional in the presence of such personal and intense images, that’s because Ms. Calle has mounted various iterations of the work since 2007, when the video had its first screening at the International Pavilion at the Venice Biennale. And even then she was more consumed with the technicalities of the installation than the subject matter.
Robert Storr, commissioner of the 2007 Venice Biennale and the dean of the Yale University School of Art, was the first to encourage Ms. Calle to do something with the footage. He had called to invite her to show at the fair in the immediate days after her mother had died. She told him she was too upset, but also mentioned the video she had made.
“Although she said she wasn’t ready, it was clear to me that she wanted to make a work out of what she had done,” he said.
Mr. Storr, a great admirer, said that his opinion had not changed since 1983, when he wrote in Art Press, a French journal, that Ms. Calle was “decidedly bourgeoise, downright annoying, the embodiment of the unreliable narrator” and “without a core.” Since then, he has acquired her work for the Museum of Modern Art, the Nelson-Atkins Museum of Art in Kansas City, Mo., and included her in various shows.
While some of her recent work happens to be more lyrical and less invasive (one features blind people talking about the last thing they saw, another documents adults seeing the sea for the first time) her reputation as what Mr. Storr once called “a stalker provocateur” prevails. Of course, now that audiences have seen Tracey Emin’s dirty-sheet installation (“My Bed,” which included bedsheets stained with bodily fluids and which was shortlisted for the Turner Prize), surveillance art, viral YouTube videos of unwitting buffoons and a litany of tell-all memoirs, the culture has caught up to Ms. Calle.
At any rate, the Episcopal Church of the Heavenly Rest had no qualms about opening their hallowed doors. In fact, the 150-year-old congregation, which runs a Heavenly Rest Stop cafe with tables in the back of its sanctuary, has timed its exhibition to capitalize on visitors to the Frieze New York Art Fair, opening Friday on Randalls Island.
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Sophie Calle as a child.CreditCourtesy Sophie Calle; Paula Cooper Gallery, New York; Galerie Perrotin/ Artists Rights Society (ARS) New York
“And for us, death is what we deal with daily,” said the Rev. Elizabeth Garnsey, who initiated the installation but is making sure certain parts are removed for Sunday services. “People always come to us for the end of life. So while it might be disconcerting to see this work in an Episcopal church, we think life is about change. And Sophie’s show is full of joy.”
Ms. Calle, who also captures her mother’s flirtatious humor in the piece, was given the blessing of her family and her mother’s friends to go ahead. When asked about her mother’s diary entries describing her “selfish arrogance,” or one that states, “I’m never a priority for her,” she shrugged.
She has few regrets about her participation in her mother’s last months as she languished from cancer. She visited her daily and often slept by her bed. “I was there with her a lot,” she said. “And I tried to bring her a miracle every day.”
For instance, Ms. Sindler was crazy about Yves Calvi, a French TV journalist. Ms. Calle convinced him, a stranger, to visit. She made martini parties too. “Her deathbed was a salon — everybody wanted to come,” Ms. Calle said. “And if she didn’t want to see someone she’d say, ‘Tell them I’m already dead.’ ”
When Ms. Sindler finally took her last breath, Ms. Calle and an attendant weren’t sure they had seen it. They wondered about it for 11 minutes. Then they turned on the Mozart concerto that her mother had requested for the end.
“Although we couldn’t detect life anymore, we couldn’t detect death,” she said. “We couldn’t find it.”
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“North Pole,” 2009, an image of her mother left by the artist on an excursion.CreditCourtesy Sophie Calle; Paula Cooper Gallery, New York; Galerie Perrotin/Artists Rights Society (ARS), New York
The video she will show has a title that means “Couldn’t Capture Death.”
Afterward, Ms. Calle gave her mother the best funeral she could have imagined. “And when I woke up the next morning, I only felt guilty because I never thought to tell her I was giving her the greatest funeral,” she said. “So I did find a way to find a little spot for guilt.”
And while some critics have suggested she makes her art to deal with the suffering of such things as a romantic breakup or the sense of aimlessness of her early adult years, she doesn’t always agree. “I make art to make art, but sometimes it has a therapeutic aspect,” she said.
For instance, changing the cassettes while taping her mother gave her what she felt was a useful distraction from the anxiety of an impending death. But she also said that nothing could stop her from being overcome witnessing the body in a plastic bag leaving her home.
“I shouted from the staircase and in the streets because the horror of death was that plastic bag,” she said. “Death is full of rituals that help us to grieve, but there is nothing ritualistic about a body in a plastic bag.”
In the chapel, she was pleased with how a framed print of her mother’s last word looked when placed against the altar. “Her last words were ‘Don’t Worry,’ but her last word was ‘Worry,’ which is really the opposite. It’s a strong word, and I like the paradox.”
In her diary, her mother suggested her “morbid” daughter would visit her more at her grave than in her home.
“It’s not the case,” Ms. Calle said, as two men placed a photo of her mother’s grave without a date of birth (because she was vain about her age) and with the inscription she wanted — “I’m getting bored already” — between pews. “But she’s right in that since I am showing this piece, I am with her a lot. She’s now extremely present in my life.”
