Coping With a Sister's Terminal Illness Through Home Hospice Care
You’re returning from a conference at the other end of the country, switch on the answering machine at two in the morning, and hear the words “I’m dying.” First, of course, you know it can’t be true. But this time it is.
What is it like to find out that someone you love is terminally ill and has less than two months? And how do you drop everything to create an instant Home Hospice?
I had often thought that I would likely take in my sister, someday, in old age, to live with me. I was ready to become her care giver, as she had been mine when we were children. That was one reason for moving back into the family’s 1790 “Homestead”—an ideal place to take in any relative or friend with all its many rooms. When I was a girl, these rooms were full of relatives, a cousin in need of better schooling, a widowed great uncle, a war bride, baby and GI husband living off the kitchen right after World War II.
But that was years in the future: we were young and vigorous, weren’t we? What made it especially shocking were her energy and seeming health; a 64-year-old, living independently in the country with her animals, doing all her own chores, baking her own bread and cookies, a “health person” knowing every remedy and all manner of country things. Six weeks elapsed from diagnosis to death.
I write about process: laughter one moment over an old recording of Nichols and May on the ever-talking radio in the corner of her room; calling the doctor the next over a sudden, alarming symptom, helping her climb onto a chair to spray a wasp’s nest on the back porch, seeing the blood-red ambulance pull into the drive. I deal with the experience of caring for my only sister, my only remaining relative of my age and the generation before, mother, father, aunts and uncles. With letting go of my life, with no family to support me in the area where we live to support me through the days and nights of suspense, so that she can let go as easily as possible. To never know what lies around the next corner: blood, pain, an inability to catch a breath, and how one can get through it. About listening twenty-four hours a day for a faint voice calling from a room down the hall, a beep on my cell phone.
My purpose is to help others. To know the incredible strength that lies within us all when we know how to call on it. To juggle the two separate lives of working while caregiving for someone with many requests and needs, caused by the body and emotions of a person approaching their exit. To handle the particular challenge of all of this when you are a rescuer by nature, or a professional caregiver used to putting the needs of everyone else first, without falling on your face from imbalance.
Sharing philosophies and strategies comes naturally to me as a Psychosynthesist. Much of my learning comes out of this system of recovery and growth developed by the Italian psychiatrist Roberto Assagioli. This deep respect for the client-patient is also profound in the work of Bernie Siegel, MD1 for whose agency I am health professionals’ trainer, teaching conscious eying and how to lead groups for people with cancer, AIDS and other show-stopping diagnoses. Years before today’s new field of psychoneuroimmunology, researching the immune response and survival, Bernie knew and taught intuitively that hope can be life-supporting. Now it was my turn to walk as a human being through the valley of the shadow of death in which I had been guiding others as a counselor.