jcover06.19.09
jcover06.19.09

Spiritual caregivers: Volunteers provide a ray of light to people nearing the end

 

In a hospital bed on the second floor of the Jewish Home in San Francisco, Janice Newman sips apple juice. It is one of the small pleasures that she can still enjoy.

At 101 years old, Janice is thin and tiny, an elderly child in a hospital bed, which is the only place she is comfortable. Her skin is translucent and wrinkled with veins visible beneath. Her bony hands could belong to a skeleton.

Newman’s hearing is nearly gone, and when she speaks, she pushes out the words as though a truck has parked itself on her chest.

“I lie here day and night,” she says. “I don’t know why I keep going on and on. Every morning I wake up and wonder: Why am I still here?”

Linda Kalinowski has no answers. The longtime volunteer sits beside Newman’s bed, as she has done nearly every Tuesday morning for the past two years, and in response to Newman’s plea, she strokes the side of her face.

“Your organs may be failing but your determination is a strong lifeline keeping you here,” she says.

Newman nods. “I’ve had a fine life,” she says.

That fine life is slowly deteriorating. Kalinowski, 53, has been a witness, a guide, a friend throughout.

Watching death’s slow march is a task that few people would willingly choose — yet it’s what Kalinowski signed up for as a volunteer with Kol Haneshama.

Kol Haneshama is a unique end-of-life care program that pairs Jewish Home residents who are near death, or at the beginning of their decline, with “spiritual care partners” — volunteers who, like Kalinowski, visit once or twice a week until the end comes.

“Our role is not a social worker or a therapist. It’s to not fix anything,” she says. “We listen. We acknowledge their reality.”
Kol Haneshama comes from a Hebrew phrase that means “let all that breathes praise God.” It was started four years ago by the S.F.-based Bay Area Jewish Healing Center (which provides spiritual care to people who are ill, dying or bereaved) in partnership with the Jewish Home and the Zen Hospice Project.

They created Kol Haneshama to buoy people who are dying or near death, or who feel lonely, unmoored and scared as they age.

Linda Kalinowski (right) comforts Janice Newman, 101, at the Jewish Home in San Francisco. photo/stacey palevsky

Volunteers work with Jews in local hospices or home hospices, but primarily they work with residents of the Jewish Home, a senior care center that serves more than 400 residents at various stages of aging.

Most people come to the Jewish Home to live for the remainder of their life. The average stay is just 2 years, 4 months.

Soon after moving in, residents have “end-of-life care meetings.” Residents’ wants and needs as they approach the end of their life are discussed by doctors, nurses, social workers and sometimes relatives and the Home’s rabbi.

A Kol Haneshama volunteer will be paired with a resident based on the results of that meeting, or if at any time a staff member makes a recommendation.

The program emphasizes the holistic nature of end-of-life care. It also promises that no one dies alone without the opportunity for spiritual reflection.

“Spirituality looks different for everyone,” says Rabbi Jon Sommer of the healing center. “Our volunteers must be open and receptive to identifying and exploring what is spiritual for a resident or patient.”

During an intensive 40-hour training, volunteers are reminded often that spirituality is rooted in the ordinary — handholding, laughter or even silence. Rarely does a resident want to meditate or debate the merits of a kabbalistic text, though the training teaches volunteers about those things to help them better understand the dying process.

Currently 24 volunteers are actively involved in Kol Haneshama. They range in age from 22 to 80 and come from all walks of life, Sommer says. Some are considering rabbinical or medical school; some are interested in becoming hospital chaplains. Most, however, simply want to support people’s self-reflection and spirituality at the end of their life.

David Carmine (right) meets weekly with Marilyn Brown, whom he has nicknamed “mamaleh” because she reminds him of his mother. photo/joyce goldschmid

Often, they find guiding people through spiritual reflection is spiritual for them, too.

“I don’t think I could ever say I had a spiritual practice until I started going to the Home,” Kalinowski says. “I’ve found a peace I didn’t know I would find.”

A lawyer with a master’s in public health, Kalinowski has worked for Cal-OSHA and also for the 9th Circuit Court of Appeals. She has long volunteered as a board member for S.F.-based Jewish Family and Children’s Services and the Jewish Community Relations Council.

After she retired, Kalinowski realized what she loved most was interacting directly with people. She was attracted to Kol Haneshama’s focus on one-to-one relationship building.

Kol Haneshama began by matching volunteers with individuals whose death was imminent. But it has evolved over time, and volunteers increasingly are paired with residents that doctors expect to live two or even three more years.

That change allows time for Kol Haneshama volunteers to gain as much, if not more, from the program as the residents do — even though they’re not the intended recipients of the spiritual care.

“For a long time I went through my life thinking: How can I do things that are really meaningful? How can I make my mark? I don’t think I had enough confidence my life would be significant or big enough,” Kalinowski says. “But Kol Haneshama has given me the gift that every life is significant — and I think that it’s made me feel very peaceful and content and grateful for the life I’ve had.”

Volunteers may eagerly boast about how Kol Haneshama has enriched their lives, but that enthusiasm masks the difficulty of their work.

Helen Luey (left) listens to classical music with Sally Eisenberg, who rarely speaks. photo/joyce goldschmid

While Kalinowski sits with Newman on the second floor, Dave Carmine meets with a resident on the Jewish Home’s advanced dementia floor.

Like Kalinowski, Carmine has volunteered as a spiritual care partner since 2005, when Kol Haneshama began.

The weekly trip is not easy for the 64-year-old Carmine. A stroke in 1998 left him partially paralyzed; he cannot use his left hand, and he walks, slowly, with a cane. A van service picks him up and drops him off.

But even on those Tuesdays when he is so physically exhausted that he wants nothing more than to lie in bed, he gets up and goes to the Jewish Home to visit Marilyn Brown.

Marilyn is usually asleep in her wheelchair when Carmine arrives.

“When I greet her, she’s awake for the entire time I’m with her,” Carmine says. “I’m not this totally selfless person. But Marilyn’s smile, her being so happy to see me, is immensely comforting, and it feels good that I can do that for somebody.”

Carmine has been visiting Brown for more than two years. It took Brown six months of Tuesday visits to remember Carmine’s name and nearly a year of visits before she would allow Carmine to hold her hand.

Although Brown has dementia, it has not advanced to the point where she is unaware of her mental state. Every Tuesday, it is the same conversation: “I’m all mixed up, David. Why am I all mixed up? I don’t like it.”

“Because you’re an old broad,” Carmine teases. “Are you hitting the vodka again?”

Brown’s anxious expression turns serene as she laughs at the joke. Minutes later, it hits her just how hazy her memory has become, and she is again paralyzed with worry. Her smile vanishes. Her bottom lip trembles.

“What am I going to do, David?” Brown asks. “I’m all mixed up. Why am I so mixed up?”

“We all forget things,” Carmine reassures her. “Maybe the stuff you’ve forgotten isn’t important. You still remember your parents, your brother Milton, your daughter Elisa. You remember what matters.”

This advice might seems simple, obvious even, but of all the people tending to Jewish Home residents, few have the time to dispense such sincere words of wisdom and comfort, says Lisa Dale O’Donnell, a recreational therapist who works with Rabbi Sommer to match residents with volunteers.

“The gift that volunteers have, which is different from myself as staff, is the ability to really spend time with residents and nurture that relationship,” O’Donnell says. “It is an amazing asset to the Home.”

Even for residents who can no longer speak, O’Donnell adds, Kol Haneshama volunteers provide a tremendous service.

Helen Luey, also a volunteer since 2005, makes weekly visits to Sally Eisenberg, a woman with advanced dementia who rarely speaks or makes eye contact.

Luey, 66, knows very little about her. Judging from a few framed photographs on a shelf in Eisenberg’s room, Luey knows she has a loving family, children and grandchildren, and that there was once a spark in the elderly woman’s now blank expression. Luey once met Eisenberg’s son, who told her his mother loved to dance.

“I don’t know her as she was,” says Luey, a retired social worker. “That is one of the gifts I bring. I’m not sure Sally’s son could sit still with her like I can because it hurts so much.”

Every Tuesday, Luey comes equipped with gadgets that help amplify her voice and the music she plays for Eisenberg.

During one visit, Luey leans forward and places headphones over Eisenberg’s ears. Speaking into a microphone connected to the headphones, Luey explains that she has brought a Bach cantata arranged by a contemporary pianist.

“Would you like to listen to that today, Sally?” Luey asks. The nurses’ station beeps are audible from the hallway. Eisenberg remains still, silent, slouched in her wheelchair.

Luey presses play on her iPod anyway and holds the

microphone up to set of portable speakers. And that’s when Luey affirms she’s made a connection with the aging woman. Eisenberg’s motionless body animates ever so slightly to the music. Her shoulders shift, her toes tap gently and she rubs Luey’s hand with her thumb.

Luey appears compassionate and comfortable in Eisenberg’s room, but that wasn’t always the case. Initially, she was scared to visit people with dementia. She didn’t understand how she’d connect without words, and she didn’t know if she’d find value in doing so even if she could. She’s since learned that fear was unfounded.

“My relationship with Sally has taught me that you can get gratification from something beyond conversation,” Luey says.

Yet even for residents who are capable of and eager for a conversation, rarely do they want to talk with their spiritual care partner about abstractions, such as God and the afterlife.

“Those conversations do happen, but not frequently,” Luey says. “More often people want to talk about the life they’ve lived, what they’re leaving behind and how they’re living now. I find something of the spirit in that.”

The Jewish wisdom she has gained from Kol Haneshama has also deeply impacted her own spirituality and identity.

She had an adult bat mitzvah two years ago at Congregation Sherith Israel in San Francisco. After that experience, and on top of her work with Kol Haneshema, she volunteered to help residents prepare for their own b’nai mitzvah, a group that has evolved (and grown) into a weekly Torah study group.

“My work at the Jewish Home has influenced my whole inner life,” Luey says.

Spiritual care partners must constantly say goodbye to the people they’ve grown to love.

“Everyone you work with is going to die,” says the Jewish Home’s Rabbi Sheldon Marder. “It’s perceived as a radical thing to volunteer for, that all the relationships you create will end.”

“But we’re all capable of this work,” adds Rabbi Eric Weiss, executive director of the Bay Area Jewish Healing Center. “It awakens what is naturally within all of us.”

Kol Haneshama requires volunteers to call constantly upon that inner strength. Carmine recalls one day when Estelle, a woman he had worked with for several months in 2005, was crying alone in her room when he arrived for their weekly visit.

“What’s wrong?” he asked.

“I’m going to die, aren’t I?” she said.

“No amount of training in the world can prepare you for that,” he says. “I made up my mind I wasn’t going to lie to her. I looked her straight in the face and said, ‘Yes.’

“She held my hand, stopped crying and said, ‘Thank you.’ ”

That was the only time they ever spoke directly about death. A few months later, Estelle died.

In four years, Carmine has seen 18 residents die. Luey has said goodbye to 10, and Kalinowski to 13.

“People ask me all the time: ‘It sounds so depressing, why do you do it?’ ” Kalinowski says. “And what I tell them is that I’ve found it very life-affirming.

“When I sit and listen to people’s life stories, which is a lot of what I get to do, I hear what are the most ordinary stories. But always, there is some kernel of wisdom that makes me feel like I’m finally seeing how green the trees really are.”

Volunteering for Kol Haneshama, she adds, “is the most satisfying thing I’ve ever done. I wish I would have found this 20 years ago.”

The circle of life is predictable. We are born, we live, we die. Kol Haneshama volunteers hover in life’s endings, yet those moments provide them with new beginnings and a new way to live.

For Kalinowski, learning to be with people at their most vulnerable helped her survive one of the most challenging experiences of her own life.

Her father died early last month after a long battle with cancer. “Kol Haneshama made it possible for me to sit by his bedside,” she says.

Upon her return to San Francisco one week after his funeral, she didn’t skip a beat, visiting Newman at the Jewish Home the next day.

When she enters the quiet room, the dying woman’s face lights up. “Oh, I’m so glad to see you,” Newman says. Kalinowski sits on the edge of the hospital bed and reaches for Newman’s frail hand.

When the women first met in 2007, a then-99-year-old Newman got around in a walker. She regaled Kalinowski with tales of her childhood in San Francisco, her bout with polio at age 11 and her two children, eight grandchildren and three great-grandchildren, of whom she is so proud.

Even in February of this year, Newman could still get out of bed with assistance, and in a wheelchair she would make a weekly visit to the Home’s beauty shop.

By March, her laugh has turned to a grimace. It hurts her chest and abdomen to chuckle.

“Everything about this is miserable,” Newman says.

“You’re a self-determined lady. It’s hard for you to not be in control,” Kalinowski says.

By April, Newman can no longer get out of bed. Oxygen tubes stick out of her nostrils. Her dyed auburn hair turns white. She lies in bed all day long, staring out her window and clutching the nurse’s call button. Just in case.

A month passes. “How much longer am I going to stay here?” she asks Kalinowski at the end of May.

“How much strength do you have?”

Newman pauses for a moment. “God gives me too much strength.”

Kalinowski reaches for Newman’s hand. They sit in silence. Newman gazes out the window, then returns her blue eyes to her spiritual care partner.

“I always love when you come here,” she says. “Your visits mean so much to me. I’m so blessed you came into my life.”

Kalinowski smiles. “I’m so blessed you came into mine.”

Janice Newman died June 15 after suffering a stroke.

The next Kol Haneshama training begins Aug. 17. To apply to become a volunteer, or for more information: www.jewishhealingcenter.org/volunteer.htm, or Rabbi Jon Sommer at (415) 750-4198 or jsommer@ioaging.org.

 

Stacey Palevsky