The April meeting, which dealt with death and dying, was intended to be the last in our life-cycle series. The response from women who attended the meeting or read the meeting notes was so strong, however, that we extended the topic to include more end-of-life issues at today’s meeting.
Jeanette Powell received a medical diagnosis in 1999 that indicated a need for surgery. The fact that her prognosis was poor prompted her to designate power-of-attorney to her children, but she found they did not want to discuss the issue. Fortunately, Jeanette’s surgery was successful.
She recently turned 65 and, though well, wanted to talk with her children about end-of-life issues. Jeanette is Jewish; her children are Methodist, Unitarian, Jehovah’s Witness, and one with no preferred denomination. Jeanette began thinking about what arrangements she wants when she dies. She wrote her children two letters, which she called her “five wishes,” and appointed her eldest daughter to make medical decisions. One child responded that she could never make a decision to “pull the plug”; Jeanette assured her that no such decisions would have to be made, that they had already been made by her. Now Jeanette’s children know what she wants in terms of a religious service and observances. They have since reported that some of their friends do not know what to do when their parents die. Jeanette intends to write more letters, in greater detail, so as to spare her children any unnecessary anxiety or questions. Her children tell her now that they value knowing what she wants.
Nancy Riffer’s husband challenged many doctors about the necessity for further cancer treatment. He refused additional chemotherapy, having already had two rounds of chemotherapy and radiation treatment. Knowing he was dying, he invited his colleagues at LeMoyne College to talk with him; he was interested in hearing the things they remembered about him and telling them of his memories of them. He thought there should be something like “Lamaze for Dying,” for birthing into the next life. He read The Tibetan Book of the Dead. He began to practice leaving his body.
Nancy was with him the night he died. At 2:00 that afternoon he had called to Nancy. He was having difficulty breathing. He finally said to her, “I have to go now. I want you to be with me, but do not do anything.” He turned and faced the wall; his breathing slowed and finally stopped. Nancy described her husband’s death as “so natural.” She stayed with him until he was cold because she needed to know he was not coming back. Although she understood her husband’s turning away from her, the experience left her feeling abandoned.
Phyllis Berman described her journey as a breast cancer survivor. Having recovered from breast cancer surgery, she had the terrifying experience of collapsing at her sister’s lake house. She was afraid she had had a seizure. Her speech was slurred, the feeling in her face changed, her handwriting was affected, and she found she could not carry a tune (distressing because she is a trained singer). She was advised to get a CAT scan and an MRI, which revealed a tumor in her brainstem; the prognosis was six months to one year. For the next two weeks, Phyllis said, she and her husband woke up every morning crying and holding each other. She was regretting what she would miss in the lives of her family. Then, suddenly, she decided not to lament. She is Zen Buddhist and decided to live in the present. Phyllis asked her doctor what happens when one dies of a brain tumor. She was told that it is not so bad, but that she should refuse intravenous nutrition and hydration. She handwrote a proxy for a DNR (Do Not Resuscitate order), specifying explicitly no hydration, no nutrition. She went on to express her desires for her funeral, such as wanting a pine box. She stopped working in psychotherapy, and a therapist friend helped by referring Phyllis’s patients to other therapists. Another friend organized a reception with food, music, and the dedication of a memorial bench with flowers at Syracuse University. She described it as a “wake” at which she was present.
Phyllis then described how she started to enjoy herself through Zen Buddhism and tai chi. She sought various forms of spiritual healing. She went to Nepal on a spiritual/healing journey. The shaman she saw there went into a trance and told her that she had an open heart, no evil spirits, and that her tumor was shrinking. Phyllis also participated in a faith-healing session with a spiritualist by the name of Amazing Grace, who touched her forehead and, she believes, further healed her. Phyllis is now back at work part-time. She feels like the experience has been very instructive. She has yet to tell her children what she wants for a funeral, but she found Jeanette’s story very compelling.
Betsy Wiggins described her experiences as her father became progressively more ill with Alzheimer’s disease. Early on, while still perfectly cogent, he had expressed his desire to have absolutely no heroic measures performed to prolong his life. Later, however, when he was no longer able to make his desires known, he developed a severe heart arrhythmia, which frequently caused his blood pressure to plummet and precipitated sudden falls. Most of the family decided that implanting a pacemaker was preferable to the option of continued falls that would have surely resulted in a broken leg or hip and subsequent confinement to bed, being that he was not a good candidate for rehabilitation. He lingered on for years, sinking deeper into dementia, eventually developing a severe infection. Last winter the family was asked for permission to move him to a hospital for treatment, but he mercifully died before a decision was reached. Betsy deeply regrets that her father’s wishes were not honored, although she understands how difficult it was for the family to feel like they were “standing by and doing nothing.”
Dorothea Nelson’s mother, from a Greek peasant family, died of tuberculosis in 1939, at the age of 30. It was then the custom in her mother’s Greek Orthodox Church in Massachusetts to shun TB victims because the disease was thought to be a visitation from the devil. Her mother decided to become a Jehovah’s Witness, causing tremendous tension in the family; her father remained a devout Greek Orthodox. Dorothea remembers that the week her mother died, she saw her aunt (who had stayed close to the family) and her uncle take out her mother’s wedding dress, with no explanation. People started to come to the house, bringing food, which was unusual because hers was not a wealthy family. It was only after the burial that Dorothea was told of her mother’s death. Only recently did Dorothea obtain a copy of her mother’s obituary; she felt she needed it in order to achieve some final closure that was denied to her as a child. She now accepts death as a natural part of life, but she had no understanding of illness or death from her early childhood experience.
Nancy Sullivan Murray recounted her experience of having had a heart attack last year. She also described how meaningful one of the WTB life-cycle meetings about death and dying had been to her. She shared her desire, upon her death, to have her body washed, shrouded, and placed in a pine box, and to have her daughters be present if they wanted to be. This is the Muslim way of burial that we learned about when Beatrice Muhammad informed WTB about this sacred duty that she herself performs for her sisters.
Peggy Thompson’s stepfather died of leukemia when he was 44 and she was 16. Her mother decided she was too young to go to the funeral, leaving her confused and hurt. She described feeling responsible for taking care of her distraught and depressed mother as a young girl.
Sharing
Many other women shared their experiences dealing with illness; with the anxiety, confusion and fear of dying felt by the individuals and their families; and with the choices families make in coping, and how those choices affect people for years.