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Final journeys photo by Jim Craven Sandy Verburgt goes through the final days of dying from bone cancer with her daughter, Nancy Rineman, left, and her husband, Anthony, by her side. Deadly illnesses have struck Sandy VerBurgt and Bob Scott: her cancer, his Lou Gehrig's disease. Here is a look into their worlds, as family members and hospice workers ease the end of their lives. By SUSAN JAY Every week, terminally ill patients in the Rogue Valley take their last breath surrounded by those they love, in the comfort of their own homes. In fact, Oregon leads the country in the number of people who choose to die outside of a hospital, and the numbers are rising rapidly. For instance, Asante Health System's hospice program served 153 patients in 1997, 363 in 1998, and expects to top 450 this year. For many patients, a special team of nurses, social workers and volunteers helps ease their pain and give them comfort and guidance in the days and weeks before their final moment. These workers belong to hospice, and they are specially trained in caring for the dying. In April and May, two Rogue Valley residents agreed to share a glimpse of their end-of-life journey, hoping their experience would inspire and reassure others and illuminate the value of hospice care. We pass on their stories today. Sandy VerBurgt: April 24, 1933-May 8, 1999 Friday, April 23 4 p.m. The air is still and warm in the large house tucked into the woods off Old Siskiyou Highway near Ashland. Hospice nurse Kristin Earl has been visiting Sandy VerBurgt here for nine months. VerBurgt, 66, has had bone cancer for two years. The cancer leaves a person's bones brittle and full of holes. A thin silver halo of hair frames her small, bright eyes and straight nose. They are surrounded by cheeks puffy from medication. Patches of bruises spot her swollen arms and legs. Sandy has many fans at Ashland's Helman Elementary School, where she was the business manager for 13 years. She's a kind of pioneer woman, picking up carpentry, livestock and farming skills like other people pick up clothes. She even raced stock cars in her 20s. Before her job at Helman, she helped her husband bale hay. Before that she was a medic in a Colorado mine. She's been fighting cancer for two years, but in the past few months it has truly slowed her down. She no longer whizzes around her spacious house in her wheelchair, screwdriver and hammer in hand, installing cabinets, shelves and whatever else is needed. She and her husband, Anthony, were building the house when her cancer was diagnosed. The home is still unfinished. She has three adult children from her first marriage and six grandchildren. She and her husband metwhen both worked in the mines. Last July, VerBurgt's doctor suggested she enroll in hospice, which provides a variety of services to the terminally ill to make their last months as comfortable as possible. Medicare pays for all of the services, which are provided locally by Asante Health System and Providence Medford Medical Center. Nurses visit weekly. Often, home health aides come daily to help shower or bathe patients. Social workers give emotional support and find resources to help the family. Before Medicare will pay for hospice, a patient must be diagnosed as terminally ill with about six months to live. When patients live longer than six months, the hospice care is extended, unless the patient is so healthy he or she doesn't need the services anymore. The programs also have volunteers who visit and help patients. Sandy, like many, didn't realize such a service was available, or that Medicare paid for it. "It's been a blessing," she said, "because it gives me extra care." As she talks, Earl changes her dressings, takes her pulse and fills her medicine container. Earl, who works for Asante's hospice program, visits three times a week. An aide gives Sandy a bath five days a week, a social worker comes often to give emotional support and a harpist comes to play so Sandy can relax and meditate. "You know that if you've got a problem, you can call and you'd get immediate support," says Anthony, 77, who takes care of most of Sandy's daily needs, including feeding, dressing and cleaning. Between sentences, sometimes, Sandy falls silent as her eyes focus elsewhere. It's the afternoon and she's tired. The 600-milligram doses of morphine she takes twice a day sometimes cause her mind to briefly drift away. And yet, there are moments when she shows a will of iron. Like when she's trying to get Annie, her waist-high Australian shepherd and Labrador mix, to behave. When Annie won't stop licking the guests, Sandy grabs the fur on her back. But the black dog keeps moving, pulling Sandy with her. The woman's petite hands shake with the effort of holding on. Anthony says Sandy had a close call a couple of weeks ago. She slept for a few days and wouldn't eat. "We called the kids from California and Alaska to say their last goodbyes, that they better come 'cause it could be next week," Anthony says. "All of a sudden she woke up and kind of came out of it." Monday, May 3 4 p.m. A cascade of fluid music fills the VerBurgts' house. The ethereal sounds come from the woman sitting next to Sandy's bed, who sings as she plucks the strings of her harp. Sandy sleeps, her small body curled up on the hospital bed as the heavenly notes fill the room. Sometimes Sandy shakes or quivers in her sleep, as if a streak of energy is shooting through her. Anthony says Sandy had a rough night. The afternoon before, he found her on the kitchen floor. She had fallen out of her wheelchair while he was outside cutting firewood. He picked her up, placed her back in her chair and moved her toward the window where she could see him outside. "She waved and I waved back," he says. As the harpist continues, Anthony remembers when Sandy's cancer was diagnosed. She had broken her leg, and it wasn't healing because the bone was so thin. She went for tests and was told she had bone cancer. "When she went to school (Helman), she told everyone she had it. She didn't hide it," he says. "If you hide it, you hide it from yourself." She went to Portland for a bone scan to see if she was a candidate for a bone marrow transplant. She was rejected. Anthony says Sandy didn't know why, but "she had the gut feeling she wasn't going to make it after that." She underwent radiation and chemotherapy, which shrunk the tumors on her back, also from the bone cancer. But the treatment also gave her back pain. Sandy wasn't quick to accept her situation, her husband recalls. They talked about cremation, and how she would divide her possessions among her three adult children -- a son in Alaska, a daughter in Southern California and another daughter in the Rogue Valley. Sandy gave away some of her things. Under others she stuck notes with her children's names. She spent a lot of time talking with Earl and with hospice volunteer Kathy Quesenberry, who would visit and take Sandy out. Anthony feels the hospice workers understood Sandy's mood swings and what she was going through more than he could. "Anytime she was distressed, they would talk woman to woman," he says. Anthony also believed that Sandy had to talk to herself, and "she had to answer herself. You can't tell her that much. She has to be at peace with herself." Eventually, he says, "she told me she accepted the fact that she has to go." After that she seemed more calm, and things didn't bother her as much. By now, the harpist, Mary Malolepszy, has stopped playing. She says she believes the music helps terminally ill patients relax and overcome their fear of dying. "I feel people who have more fear, that their experience is much more painful than if they were to see death as another stage of life," she explains. "That's what I do. I help them spiritually." Earl and Malolepszy taught Sandy to relax while listening to the harp and to travel to her "visual garden," where she sometimes finds peace. Wednesday, May 5 Noon Sandy hasn't left her bed since Sunday. Anthony has been by her side, trying to feed her in the morning, check her catheter and administer pain medication. He has adjusted to the caregiving role by acting as if nothing she needs is a problem or a burden, even though he also cleans the house, chops wood and runs errands. "If she sees me down in the dumps, that just makes it harder for her," he says. When she slips into periods of depression, he says, "you've got to bring the memories up. It's the past that has a lot of good stuff. It does help. Always remember the good stuff we've done through the years." Their memories include baling hay together, living in a shed while building a home in Phoenix, raising cows and gardening. "She was a hard worker," he says. He remembers that she didn't have to help him with everything, but she did anyway. "We're a team," he says softly, solidly. In the early afternoon, Sandy's daughter Nancy Rineman arrives with her husband from their home in Phoenix. "Hi, Mom," Rineman says as she sits close to the bed and takes her mother's hand. Rineman gently paints her mother's fingernails and toenails. A hospice nurse and social worker also drop by to check on Sandy and her family. "She may not appear to be coherent, but she's very aware of what's going on," says Colleen Tucker, Asante hospice nurse. "All the energy she has right now is being focused to her vital organs." Tucker tells Anthony, "This will probably be the last time she'll be able to respond to you." As the day wears on, it becomes clearer to him that Sandy could really be close to the end. What does Sandy think he'll be doing when she's gone ? "I told her I wouldn't get married," he says with a smile. "I'll finish the place. She knows me. She figures I'll be out here cutting a lot of trees," he says, looking at the woods outside the front door. How has he dealt with her final leaving? He is silent for a moment. His steady hazel eyes grow moist and he says, "When she's got to go, we've got time" to say goodbye. Friday, May 7 2 p.m. Earl hasn't seen Sandy for a week. Her longtime patient has spent most of the week curled up in her hospital bed, sleeping off and on. Earl leans over the bed, not even inches from Sandy's face, and says, "I missed you." Sandy opens her eyes and in a high, coarse voice says, "I missed you too." Then her eyes close again. Earl notices that Sandy's legs are much thinner today; the swelling has subsided. "Her body is using the fluid that she has compacted in her legs. Any extra fluid she has anywhere, her body will look for and use if she's not taking any fluid." Sandy has not been drinking for the past several days, not even water. Earl gently cleans the deep purple bruised spots on Sandy's arms and legs, then stops, looking closer at Sandy's calves and feet bottoms. "See how blotchy this is?" she asks Anthony, pointing to Sandy's calf. "See the purple and the variations of color, see how it kind of spiders around? "That's just a natural progression," she says. Sandy's body is beginning to shut down. Her heart is weakening, less and less able to pump blood to her extremities. Earl reaches for a tiny, cobalt blue bottle filled with lavender and rose massage oil. She gently rubs Sandy's calves and feet and then her forehead, cheeks and jaw line. Earl also reminds Anthony of Sandy's medication, including the morphine. Different patients need different types and amounts of medication, Earl says. Hospice nurses can greatly reduce people's physical pain, but often, patients also experience spiritual pain. She says it's pretty clear to the hospice nurses when terminally ill patients are struggling with their past, or something unresolved in their life that prevents them from accepting death. "You almost have to go through that suffering, to get past that, then you're quite peaceful," Earl says. "Sandy has gone through her suffering phase. She used to be more frightened, more scared, more angry, but she worked through that. It wasn't easy, but she did, and now she's so peaceful. Some people never go through it." Earl finishes her massage. She leans way over in the bed, giving Sandy a big kiss. Suddenly Sandy wakes up, reaches for Earl and gives her a hug with her raised arm. Before Earl leaves, she tells Anthony to call her over the weekend and to make sure Sandy is comfortable, and she reminds him to change Sandy's position every couple of hours. "Remind her, when she drifts off to sleep, to go to her garden. She knows how to." The following night, Sandy dies, while her husband stroke her head and soft, romantic music plays. Mail Tribune Copyright � The Mail Tribune 1999, Medford, Oregon USA