Photo: Case manager Holly Mansur talks with Enrique Salcedo, who is in home hospice care. He sees his home as a refuge. (Pat Shannahan/The Republic)
PHOENIX—Louis Amiotte rummages through boxes and bags that line the living room walls of his second-floor apartment in central Phoenix. He just moved in, and nothing much is in place.
He stops to pull one of his treasures — a long brown eagle feather — from a leather case. A Lakota Indian born in the Black Hills of Wyoming, Amiotte smiles, remembering how the feather came to be his.
‘Big Journey Into the Sky’
It was 1978. Amiotte was 27, teaching art in a community center in San Diego and living in a trailer on the San Pasqual Reservation.
One day he met a medicine man, a well-respected elder. The two became friends, and Amiotte invited the elder to join him in a ritual sweat ceremony in the structure he had built behind his trailer. In return,
‘Besame Mucho’ Memories
In Palliative Care
Chest pain that turned out to be cardiovascular disease landed Enrique Salcedo in hospice care. Salcedo knows some day his heart will grow weaker, his breath more labored. He knows a day will come when he will die.
And when it happens, he wants to be at home, in the place where he knew love and happiness.
Salcedo's eyes tear up, thinking of the death of his wife, Irma, in December 2012. Ambulance workers came into their home, placed her onto a stretcher and took her to a hospital, where she died.
“No, no, no,” says Salcedo, 87, wiping tears from his face. “That is not what I want. I don’t want to leave my home.”
He is adamant. His parents, their parents, all died at home.
He’s made his wishes known to Comprehensive Hospice and Palliative Care. For the past five months, a nurse, a chaplain, social worker and caregiver from the company have checked on Salcedo weekly.
In his living room recently, Diane McCallum doles out his prescription medication into tiny bins of a plastic container
“You been getting enough sleep,” she asks amiably?
“A little,” he replies. “When I’m in bed, I always hear somebody knock at the window, but nobody is there. Every morning, 5 o’clock, somebody knocks. You think I’m crazy?”
McCallum knows he is talking about Irma. She looks up and shakes her head. “No.”
“You think it’s normal,” he asks?
“I do.”
Salcedo frowns: “I go to the door and say, ‘Viaja: Rest in peace.’ ”
The couple had been married more than 42 years when she died. He worked for a company that made bread. She worked as an accountant.
When it’s quiet in his house and he hears a commotion, he invites Irma to talk to him. Sometimes he sings to her: “Besame, besame mucho.” (“Kiss me, kiss me many more times.”)
"I know one of these days, maybe I go to sleep and not wake up," he says quietly. "But I'm not afraid."
--Connie Cone Sexton
the man handed Amiotte a long brown feather and told him, “You’re going to travel a lot in life, and this will protect you.”
Amiotte, 63, always kept the gift close.
It went with him on seven vacations to Europe, and as he moved to several cities across the United States.
“And it was with me when I almost took that big journey into the sky,” Amiotte says, chuckling, about the day he became violently ill.
It was February 2013. A case of double pneumonia landed Amiotte on an emergency room table at the Phoenix Indian Medical Center. He was bleeding and vomiting-- two months after doctors told him he had liver cancer.
On the table, Amiotte fell unconscious. Doctors and nurses worked to revive him for an hour and 20 minutes. “I was ready to walk,” Amiotte says. Thinking back, he said, “I saw a mist — just what everybody talks about. I was ready to head out. No luggage, just ready to go.”
Suddenly, a face peered down and a voice urged him not to leave, that a warm bed was waiting. Amiotte believes it was his guardian angel.
He was in the hospital for about five days. He told caregivers about the visit from the angel and how he saw the feather as his protector. When the darkness of the illness led him to have nightmares about being chased by demons, they knew that having visions — for many Lakotas — was a way of life.
Amiotte was grateful his caregivers understood. Today, he has outlived doctors’ expectations. The Indian hospital continues to monitor his care.
Cultural Influence
How people approach death and near-death experiences can vary widely among cultures. Belief systems affect whether a patient asks to die at home or in the hospital, whether an individual will make decisions about final care alone or will involve family, and whether he or she will accept hospice or fight until the final breath.
Many African Americans handle end-of-life issues by gathering around loved ones in the hospital and praying for a miracle, says George Vinson, 63. That’s how the family supported his sister-in-law, Barbara Richardson, who died in February.
Phoenix resident and hospice patient Enrique Salcedo sees his home as his refuge and hopes he will die there. His ancestors “didn’t go to the hospital,” says Salcedo, who suffers from cardiovascular disease. “Your friends and family and the doctor would come see you. There would be lots of people outside in chairs, benches, lining the street. And they would wait.”
On their end-of-life journeys, Amiotte, Salcedo and the Vinson family have encountered medical professionals who honored their wishes and respected their cultural values. That’s both good and necessary, says V.J. Periyakoil, MD, director of Palliative Care Education and Training at Stanford University School of Medicine, who has studied aging and end-of-life issues for many years.
Her research focuses on the needs of 13 ethnic groups that she identified as vulnerable with limited access to health care.
“People talk about the silver tsunami” [the growing number of people living longer] but I think it’s a silver-brown tsunami — the number of ethnic elders increasing in leaps and bounds,” she says.
Increasing sensitivity to cultural views is a focus at the University of Arizona College of Medicine, says Carlos Gonzales, MD, an associate professor in the university's Department of Family and Community Medicine.
He tries to have the message hit home, he says, before students begin working with patients one on one. In August, he gathers second-year students in a large room for a traditional Native American ceremony to bless them and the bodies they dissected months before. The ceremony, Gonzales says, who is of the Pascua Yaqui tribe and Mexican descent, helps "cleanse them of negative energy, so they go have a good start to their second year."
Longtime Arizona physician Lisa Stearns, who specializes in pain management for the terminally ill, says some health providers may ignore cultural needs because of "our own fear of death" instead of "gently guiding them [patients] down the path to acceptance of death."
Stearns says medical professionals also need to involve the entire family rather than just the patient: “It’s amazing to see how some cultures give the dying person space, while others huddle around.”
Different Rituals of Comfort
Teresa Martinez, a hospice chaplain with Banner Health, asks patients and families to talk about rituals that are important to them. “We want to know what will bring them comfort and then see if we can provide those services.”
She offered the example of a Hispanic man with a hospitalized Korean wife. When the staff opened discussion of whether she should have surgery or be admitted to hospice, “The husband stood up and took us out of the room,” Martinez says. “He said he didn’t want us to speak bad news over her.”
Her children had the final say and opted for surgery, without giving their mother a voice in the decision. “That is common for many older Asian families,” Martinez adds.
The family of a Japanese American patient who was Catholic wanted to honor their Buddhist heritage when he died. They asked that only the family be allowed to bathe the body and then dress him in fresh linens.
Martinez recalled, “They were not shy about sitting down and explaining it all to us so that we wouldn’t accidentally do something to offend them.”
She said many African Americans she has counseled don’t question illness and turn to God for help: “They sometimes look to their pastor more than the doctor for guidance. We’re much more successful in treating the patient if we have the pastor involved.
Vinson, who works for Universal Memorial Center in Phoenix, selling prepaid funeral plans, agrees. “We all realize we are going to die and we don’t mind planning for it,” he explains. “But when it comes down to actually giving up on our loved ones... our faith is so strong. It says all things are possible.... We don’t give up. We just hold on and hold on and hold on.”
But when death occurs, it’s appropriate to celebrate the “homegoing,” Vinson says.
That’s what he and wife, Marva, did when her oldest sister died unexpectedly earlier this year.
“We felt that God was going to have everything be perfect,” Vinson says.
Sources of Strength
When Louis Amiotte survived the ordeal on the emergency room table, he was still facing a terminal illness.
He was told he’d be lucky to live through the summer. He had to get through not only the pain of his illness but the emotional baggage that it carried. Sleep didn’t bring relief.
Nightmares left him shaking when he awoke. So Amiotte turned to what he knew best--art. He began to draw, hoping that putting the horrifying visions from the dreams onto a sketchpad would help him confront the demons.
“There were a few times I’d wake up just crying and scared, just scared beyond belief,” he says, chocking up. Some drawings — stark with bold strokes — showed a solitary figure being chased.
His creative spirit also went to work on the canes he started to use to steady his balance and ease his arthritis. He’s adorned them with what he calls his “Lakota bling-bling” — beads in four colors: black for the West where the thunder God lives; yellow, for the East, to honor the sunrise; white for the North and its coldness; and red for the South, where water springs flow free.
He draws extra strength from another row of the beads — the one he’s attached to the collar of his 10-year-old dog, Sophie, whom he rescued from a kill shelter in Albuquerque.
“She was dead dog walking when I found her,” Amiotte says.
Sophie helps bring him out of a funk when the nightmares are so bad, nudging him with her cold square nose, hoping to rouse him for a pat or maybe a walk.
Amiotte survived the summer, surpassing doctors’ predictions. In August, he transitioned from hospice to palliative care. His illness isn’t curable but it is under control.
He started attending support groups with other Indians who have been diagnosed with a serious illness. One day, Amiotte brought his eagle feather and talked about its importance in his life.
“They were so happy to share in that with me,” he says.
Not long after moving into his apartment this spring, Amiotte decided to bless it.
He took a clump of “sweet grass” from a prairie and mixed it with sage and tobacco in an abalone shell. Lighting the mixture, he says, allows “your prayers to be taken up by the smoke to the heavens.”
Amiotte wants to be cremated, his ashes blended with Sophie’s and then scattered in northern New Mexico.
“I belong to the West,” he says. “I am a child of the West.”
This article is adapted from a feature by Connie Cone Sexton for the Arizona Republic. She wrote the story with support from the MetLife Foundation Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America.