CHAPTER 1
Introduction
Everyone dies, but no one is dead. — Tibetan saying
I have worked in various capacities in the healthcare field for over thirty-five years. These professional experiences, coupled with my own personal experiences, have given me intimate knowledge of the hardships of illness, aging, and frailty, as well as firsthand experience observing family interactions and dynamics when a loved one is ill and reaches the final stages of his or her mortal life.
Initially, I worked as a nurse's aide (now called a patient-care tech) in a nursing home (now called a long-term care facility). The residents (formerly called patients) of the nursing home ranged from people who were self-sufficient and had minimal needs to those who were completely dependent on the staff for all their basic needs, including feeding, bathing, and all bodily functions.
Just as there was a wide range of resident needs, there was a wide range of family involvement in the resident's life and care. The response by families to a loved one's illness and frailty varied greatly. Reactions ranged from complete denial of the patient's condition and non-involvement, where the family ignores the patient completely and refuses to acknowledge they are ill, to the opposite extreme, where the family is over-involved. An over-involved family will try to dictate every minute of the patient's life and run roughshod over the patient, taking away the patient's right to make decisions, telling the patient what he or she will or will not do in the belief that the family knows best. Families that cannot accept the patient's illness and that abandon the person at this crucial time cause extreme emotional pain to the patient. This abandonment often leads to the patient being placed in a long-term care facility. I think this is a sad situation; it stems from selfishness or poor coping skills on the part of the family, since they are unable or unwilling to "walk in the shoes" of the patient and put their own needs aside in order to help their loved one.
These early years working in the nursing home laid the foundation for how I have interacted with patients and families throughout my career. I have always remembered those I cared for at the nursing home. The residents taught me to be truthful with them, to respect them (after all, they had had rich life experiences that I as a young person could learn from), and to always remember that even though they may suffer from severe dementia, were nonverbal, or were bedridden, they were still someone's mother, father, sister, brother, aunt, uncle, child, or loved one.
I grew up in a small rural community, and working in the nursing home brought me very close to the experience of death and dying. My mother is a registered nurse (RN), and she would often talk about patients she had cared for. She knew almost everyone in our small town and had taken care of many of them over the years. Hearing about her work experiences taught me at an early age that everyone dies eventually, but her job was to take care of them to the best of her ability and to keep them as comfortable as possible.
While I was working at the nursing home, many residents died, as would be expected, given their advanced age and multiple chronic illnesses. This is something I expected when working with the frail elderly. I remember one winter when fatalities were particularly high. Every week, at least one resident died, and sometimes several died in a single week. I read On Death and Dying by Dr. Elisabeth Kübler-Ross because I wanted to know what those who were dying were experiencing. I also wanted to know if there was something I could do to help make their transition more comfortable. The book helped me to understand that dying is the natural progression of life, that it should not be faced alone, and that we all will face our own death. How we face that death and how others help us are paramount to having a good death.
I also learned from the residents that death was not something to avoid or fear. I noticed that they never seemed upset or scared when they spoke of dying. It was a topic that was discussed with pragmatism. Over the years I have had many patients tell me they are tired of living and look forward to what lies ahead for them. People who live with a severe illness or multiple prolonged chronic diseases may find the challenges of living insurmountable and become fatigued with living. The oldest old, those eighty-five years and older, may feel they have lived so long that they have outlived their usefulness. This can be hard for family members to understand. My father, who died at the age of ninety-two, would speak of how he had lived too long. All his friends had died. It saddened him that none of his friends would be able to attend his funeral, for they had all preceded him in death. In the last two years of his life my father developed dementia. He became aware of his declining mental capacity and was terribly upset by this. He would often wish for death to take him and spare him the degradation of his mind. He would ask me to help him die before the dementia completely took him over. This was terribly painful to watch as my father become completely dependent on others for his care. It was especially painful because I knew he was miserable. By the time my father died, he could only remember our dog, and seeing her was the only thing that gave him pleasure. He had forgotten everyone else, although he did say he thought we were nice people.
The residents of the nursing home seemed to have an awareness of when they would die. Oftentimes at the end of my shift, I would say "I'll see you tomorrow," and sometimes they would respond with "I won't be here" or "no you won't." At first, in my youth and naïveté, I dismissed these statements. How could they possibly know that? At first I was surprised to find that they were not there when I returned, just as they said. They had died. But as time passed and this occurred repeatedly, I knew that they really did know something I couldn't know. What stayed with me the most was not the fact that they died but that those words were always accompanied by a calm demeanor and often a slight smile on the lips that told me they were at peace with their life and they were ready for whatever came next. I found this comforting. To have an awareness of when their life on earth would end seemed to provide some comfort and even control to the residents. They never appeared to be upset, but rather they were holding a secret that I was fortunate to have them share with me. Based on these experiences, I have never considered that dying might be scary or something to be avoided, but rather another chapter of living. I learned that grieving is for those left behind, not for the one who has died. They are now at their final resting place, and those remaining must continue on without them....
