By JUDITH DULBERGER
THE REV. VICKI YODER, FULL-TIME CHAPlain for Hospice of the Valley, believes that dying people want to experience a "good death."
Ellen Pence, hospice clinical director, elaborated on what is meant by a "good death."
Pence has been with the hospice based in Youngstown for 20 years, practically from its inception. She said: "Dying people want some control over their lives. A lot of people by the time we admit them [to hospice] feel powerless. They want to be able to have some control over what's happening to them."
As far as the "good death," she said, "The dying person's fear is sometimes not so much of death itself, but fear of the dying process." They worry about such things as "What's going to happen to me?" "Am I going to be in pain or relatively pain free?" "Will I be able to continue to function?"
June Augustine experienced many of these same anxieties. "How am I going to suffer? Is it going to be painful?"
At the time we spoke, June's treatments had kept her relatively pain free -- medications for pain or discomfort, platelet and blood transfusions to control bleeding, antibiotics for infection or fever.
In fact, though she tired easily and was not able to live on her own, June remained quite self-sufficient during her illness. I asked her what she did every day outside of taking medications and visiting the doctor or hospital for transfusions.
She would get up, take a shower. She might watch television or do some things on her laptop computer. She was mostly homebound to a degree, not able to go into restaurants or into places with large crowds because she had no resistance to infection or virus.
But she would go out for rides and even planned to do a little walking when it got warmer. June loved the outdoors, having grown up on a farm, and she even ran her own small cattle farm for a short time.
June laughed, "I don't do any cooking or much cleaning, but I can take care of myself, make the bed."
June and her sister, Judy Lorant, sometimes would do a little cooking together. As we talked, I was left on the outside of an inside joke about a recent experience with broccoli soup that made them laugh.
June admitted she still had fears and cried a lot. At that time, she was not totally at peace with her illness. "At night I take an Ativan [anti-anxiety medication that provides relief for insomnia] so as not to think about it too much."
But June would talk openly her sister, Judy, about dying. And Judy said, "I tell her she can't worry about dying every day because when the time comes, she'll know it and she'll be ready."
June's family, her children and her extended family were very supportive. The family would come over on weekends. "We just have a good time," June said.
They'd play Shanghai Rummy religiously. They'd laugh and enjoy the time together. June has three children -- a son and two daughters -- and six grandchildren, ages 19 to 4. The family seemed to thrive on laughter. One of her daughters, June said, has an exceptional sense of humor, which was very good for her.
What did June have to say about her family? "If I didn't have family support, it would have been much harder to deal with."
Leaving her home
June gave up her house when the prognosis left no further hope for treatment. She moved in with her sister, Judy.
"I couldn't see her go someplace else or be on her own," Judy said. The siblings were less than a year apart. "We've always been close, spent all our time together as girls, through our marriages, having kids. ... June being here has been company for me."
For three years, Judy had been caring for her husband, who was in the early stages of Alzheimer's disease. He died shortly before June moved in with her.
June's 86-year-old mother wanted to take care of her. But because of her mother's age, it was really too much. "To see June slowly die would hurt my mother a lot," said Judy.
June's mother came to visit every day, and she took June to the doctor when Judy couldn't.
June's three children, though grown and with children of their own, were a big help. One of her daughters has a medical background.
Right from the beginning, she insisted that June get organized, that she learn about her condition. The daughter went over things several times with her and had her read all the information they could get to help June understand her disease.
"She set everything up for me from the beginning," said June. She helped with chemotherapy scheduling and planning ahead for lodging at the Cleveland Clinic.
"She took time off from work, planned and organized everything. If it wasn't for her, I don't know how I would have gotten through it."
Her daughters shared time at the Cleveland Clinic during treatments so that June would not have to be alone.
June's children would call once or twice a day, sometimes more when she had setbacks. "Do they talk much about your dying?" I asked.
"No," she said, "it's hard for them to accept." June didn't want to make her kids fearful because she was afraid.
But that kind of communication may be very important, says doctor and author David Kuhl. He has found that a deep anxiety about the effect of one's own death on loved ones can keep the patient from speaking about that fear.
"For some people, the need to take care of others is greater than the desire to alleviate their own fear and anxiety by speaking about those emotions."
Rabbi Simeon Kolko of Ohev Tzedek congregation in Boardman reiterated this point.
"Very often people who are terminally ill and their families talk past each other," he said. "The patient feels he or she can't really be open about their fears and about how realistically they see their own situation because they feel they have to protect members of the family.
"And on the other hand, the family feels they can't talk openly about the situation for fear of upsetting the patient."
Work to do
Rabbi Kolko understands the motivation, but the effect is to deprive the family and the patient of a really vital opportunity.
"There is a lot of work that needs to be done," he said. "Sometimes it has to do with healing relationships. Sometimes it has to do with giving the person the opportunity to express regrets. You can keep that bottled up inside and die with those thoughts shared with no one.
"Or you can utilize moments like this as an opportunity to really have meaningful conversations with the people that mean the most to you."
Rabbi Kolko is realistic, of course. Those conversations don't always just happen. It takes courage and openness and sometimes the skills of an outside person to create the right conditions.
Religious people may often fill that role. The Rev. Jay Eastman, a Protestant hospice chaplain, does not like to see this time wasted. To him it is sacred time, sacred space.
"I tell [the dying person], 'Look, you only have this much time. It's a privilege that you're going to allow me into this time. This is your time that's valuable and it's actually sacred because you're not going to get any more time. You can make more money, you can lose weight, you can get a face-lift, but [you] can't buy any more time.'"