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         Joyce & Charles: The Hospice Alternative

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Having hospice care to help out when her 43-year-old husband Charles was dying was the difference between "flying blind and flying with radar," says Joyce Kirk. Joyce and Charles had been married 22 years when they discovered he had liver cancer and probably wouldn't last out the year. They had two teenage children and Joyce says neither she nor her husband had given much thought to how they would handle a terminal illness. Charles' physicians hadn't been much help.

Pull QuoteJoyce lives in Reston, Virginia, and a nurse she knew told her about the Hospice of Northern Virginia. The year was 1983 and Joyce had never heard of hospice. Her friend told her it was a program that addresses the needs of persons with a terminal illness. Joyce liked the idea that choosing hospice care would enable her to keep Charles at home and be cared for by his family. Making the phone call was difficult for her, however. "It was a defining moment. I was going public and saying 'My husband is on the road to death.' "

A Safety Net

As soon as Joyce made the call, the hospice began working with her to help meet her needs. They assessed her insurance coverage to see what benefits would be paid for and talked with Charles' physician. Three days later, a nurse visited the home and took over. "Suddenly, it wasn't only my responsibility anymore," says Joyce. "There was someone who understood exactly what we were facing."

As soon as the nurse arrived, she took an oral history from Joyce and Charles, got acquainted with the family, and began to create a plan of care. "We felt like we suddenly had a safety net, both practically and psychologically."

The hospice staff was there for any support; this included a nurse, a social worker, and a volunteer. The nurse came at least once a week. Sometimes, she would stop by on her way home. The hospice got a more comfortable hospital bed for Charles when he needed it; they brought in a bedside commode; and they even were willing to drive Joyce's daughter to the dentist to get her wisdom teeth out.

Sharing the Sadness

Photo IllustrationHaving someone ready to bend an ear was a great comfort for Joyce as she tried to cope with her grief. As a Minnesotan of Scandinavian heritage, Joyce maintained a stiff upper lip for fear of upsetting her husband and her children. She was very close to her husband but she was having a hard time sharing her feelings about his illness and his inevitable death. Joyce started to pull away from Charles to protect herself from the pain she would feel when he died. It was the hospice nurse who urged Joyce to let Charles know her feelings. "She was the one who said 'It is important for you to be strong and do what you need to do, but it is also important to let him know how sad you are.' " Joyce says those words allowed her to feel the pain of losing her husband and friend; she allowed herself to cry more openly.

The other thing the hospice offered her was guidance. Joyce appreciated knowing that she could call on the hospice to find out what to expect next with her husband's illness; they could tell her what symptoms to look for and whether he would be in pain.

Charles Kirk died in August of 1983, six months after he was diagnosed with liver cancer. He died at home in the middle of the night with Joyce by his side. "It was quite a beautiful moment and removed the fear of dying for me," she says. She called her minister and the hospice nurse, who was there in 15 minutes. They helped her tell her son and daughter that their father had passed away.

A Concept of Care

It's been 14 years since Charles died. Joyce has since remarried, but she has never lost contact with the hospice movement. With her new husband, who is in the foreign service, Joyce has lived in Hong Kong and Australia. During her years in those countries, she volunteered for their hospice programs, working on fundraising, helping out with grief programs, and writing newsletters. Upon returning to the U.S., Joyce immediately hooked up with the Hospice of Northern Virginia, where she is now in charge of volunteers.

Pull QuoteJoyce acknowledges that there is a common misconception about what hospice care is. She says it's important for people to realize that it's a concept of care, not necessarily a place, when all the curative measures have been exhausted. She says she can't imagine what it would have been like not to have Charles at home throughout his illness. When he did have to go to the hospital for four days because of a fever, his children sat on the edge of the bed and wouldn't look at him.

At home, Joyce says, his children never left his side. They brought friends over to visit and had long talks with their father. Charles' friends also visited from all over the world to say goodbye. When Charles couldn't sleep because he was in discomfort, the family would keep him company and sit around the kitchen table at two in the morning, eating peach pies Joyce made for her husband. To this day, Joyce says, she makes a peach pie every August 8, the day Charles died.

Photo Illustration

REAL LIFE STORIES
Mickey: Learning from Death | Joyce & Charles: The Hospice Alternative
Sabina & Perry: A Patient's Wish | Jonathan: A Planned Death
Mary & Warren: Coping with a Long-Term Illness | Claire & Don: One Family's Struggle

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