The Good, the Bad and the Ugly . . . and My Greatest Hope
- Jul 24, 2018 -
- Gail Robbins
My Uncle John died suddenly at age 95. He was still active, driving, alert, living in a retirement home and he continued to play his beloved violin. He said he felt closest to God when he played his violin. Uncle John was also a minister and he married both my husband and me in 1974 and our daughter and son-in-law in 2002. He had a last will and testament, an advance care directive and had spoken to his daughter about wanting to die peacefully at home with some degree of control and dignity. During his last few months he was mentoring a high school student violinist. My uncle and his student were performing for the residents in his retirement home. When they were finished, my uncle sat down and died. His daughter was in the audience. He died exactly as he would have wanted — with his violin in hand and his daughter nearby. We should all be so lucky!
Although death is never joyful, in my experience, there are three possible kinds of death: the good, the bad and the ugly. Just like the movie of the same name.
Sudden death is (can be) the “good”
No lingering pain, disability or feeling powerless — just like my Uncle John. Less than ten percent of people die suddenly. Having a plan that is articulated and shared can sometimes help you achieve your goals.
My father, however, died more gradually. Gradual death can take a few months or several years. Dad was always active but in his late eighties he began to slow down as a result of congestive heart failure. When he was 89, he got pneumonia. His doctors agreed he would have about five months to live. During the next few months he was mentally alert, but his physical condition deteriorated. He was often frightened, as sleeping and breathing became more and more difficult.
He was in hospice, but his care took quite a toll on my mother. We tried to stay upbeat and positive around him, so of course we didn’t talk about death, what he needed for closure or his final wishes. In May, he fell down the stairs and was taken to the emergency room. By this time my mother was exhausted and could no longer care for him at home. When they transferred him from the hospital to a nursing facility, he was furious. Once he realized he was unable to go home, he told everyone to leave. The nurse later told us he got up, walked out into the hall, sat down on the floor, then lay down and died. He was in the nursing home for less than six hours! It was almost exactly five months after his bout with pneumonia. He died alone and in a strange place. I did not have an opportunity to tell him I loved him before he died, nor ensure he was able to die at home because we did not talk about such things.
Gradual death is the “bad”
Gradual death is bad but it can be better if we talk about what is happening and listen to what the dying person needs and wants.
Over 90 percent of people die gradually like my father, or over an extended number of years like my mother. Mother began to decline shortly after my father’s death in 2006. Over the next three years macular degeneration, arthritis, driving a car and inexperience at managing on her own proved to be too much for her. When she fell and broke her wrist, I knew it was time for her to leave her home. Reluctantly, she moved into a retirement community in an independent living apartment. It was a difficult adjustment. She was always gracious, but she was unable to adapt to her new surroundings and she seemed to get more and more confused. She stayed in her independent living apartment until she was diagnosed with dementia in the summer of 2010. That winter, I had to move her into assisted living. Eventually she could no longer dress, bathe or manage personal hygiene. In 2014 she needed to be moved into the highest level of assisted living because she could no longer feed herself or understand her surroundings. In her last months she was filled with anxiety and distress. She died nearly eleven years after my father passed away. She was 97 years old.
My mother’s decline was agonizingly slow. When she was diagnosed with dementia, it was too late to ask her how she would like to die. It was too late for her to tell me her greatest joys, lessons learned or her final wishes. In her last few years she was often frightened, paranoid and confused. She was in and out of the hospice program because they usually cannot sustain support for the dying beyond six months. She was on various medications for anxiety. She was unable to feed herself and I learned staff were legally required to feed her even though she did not want food. Ultimately, she needed assistance in breathing. Her last three months she was in constant agony punctuated by gasping for breath, refusing to eat, incontinence, confusion and terror. Although I had her power of attorney, without a health care directive there was nothing I could do to help her pass peacefully into her final rest.
Long-term death is the “ugly”
It can be near torture to watch someone you love slowly decline in body, mind and spirit. It can also be exhausting both financially and emotionally.
How a person would like to die is usually not discussed or planned. Obviously, we cannot always plan or control our circumstances, but dying is a certainty. Typically, we leave a last will and testament about what to do with our resources and possessions, but we seldom discuss or plan for how ideally we would like our last days, weeks or months to proceed if we must rely on others.
Several realities exist in our culture:
- Sometimes a person grows too old, infirm or confused to manage their independence, make choices or speak for themselves. The elderly or infirm increasingly do not live with family members.
- Those we love (particularly our children) do not want to talk to us or listen to us about our last wishes. They prefer to ignore the fact that we will die.
- The medical profession is invested in keeping us alive. Machines and medication can keep us alive for a very long time. Artificially prolonging life often occurs even when a person’s quality of life is minimal.
What are the options for a person who is not terminally ill, but who has a significantly reduced quality of life?
My greatest hope
Given these realities and my experience, I decided to explore my options. I discovered that any hope of improving the likelihood of my final wishes coming true must be done while I am of sound mind and body and must be legally codified. Here is what I have chosen to do and hope others will honor:
- I have defined my “Quality of Life Indicators.” That is, the things I do and want to do as I age that are important to me. For example, being able to read, cook, walk, travel, exercise, live in my own home, feed and dress myself, manage personal hygiene, medications, etc.
- I have completed an advance directive called Five Wishes. Five Wishes meets the legal requirements of 42 states. It is written in everyday language and helps people express their wishes in areas that matter most — the personal and spiritual in addition to the medical and legal. It also helps you describe what good care means to you, whether you are seriously ill or not. It allows your caregiver to know exactly what you want. This can be a gift to your family, friends and doctor because it keeps them out of the difficult position of having to guess what kind of treatment you want or don’t want.
- I have identified a “team” of people who I have authorized to make health related decisions for me. A team is advisable because often children, spouse, close family or friends are too emotionally involved to be a strong advocate for your wishes. I have included a medical professional on my team. (This may be difficult, but persevere. It is possible.) I have reviewed my “Quality of Life Indicators” and Five Wishes with my team and asked them to agree to carry out my wishes.
- I have included my “Quality of Life Indicators” and my Five Wishes with my last will and testament. I plan to review and update these documents periodically. Possibly every three to five years.
- Optional: I have written an “ethical will” and included it with the above documents. An ethical will is a letter or list of things I want those I love to know about me. For example, my favorite memories, meaningful life experiences, things most important to me and best hopes for them.
For most of us, death will be a process, rather than a moment in time. We can do our best to relieve those we love from arguing or having to make difficult decisions that might not coincide with how we would like to spend our final days. We can try to protect them from witnessing our “bad” (gradual) or “ugly” (long-term) death. My goal is to achieve balance between what is possible to extend my life with dignity, to protect those I love from difficult (and perhaps costly) decisions, and to transition from this world to the ne xt peacefully. It is my greatest hope that the conversations I have had with my team and the documents I have prepared will achieve this goal.
(Ms. Robbins is a retired educator who lives in Kenmore, Washington)