Thirteen years ago, at the age of sixty-four, I decided to stop promoting my stories for children and start to work on stories for the last third of life. Out of that decision grew the Jung performances, a memoir (E-book) and a long fantasy story (paperback book) about a family of mill mice. During those years I also supported my mother to the end of her life. An unpublished journal–shared only with friends and family–was the creative result from that life experience. It has been a busy time in my life, full of performances, travel, gatherings at the Clemens Road house and all shared with my mate for life.
Nancy and I did not meet until we were in our mid-fifties–old enough to rationally evaluate a mate, but young enough to be amazed by the sexual energy generated by our coming together. We both kept journals during that time, so it is possible for me to go back and find the backing for these declarations. But perhaps more than the rational or emotional common ground, we immediately identified a passion for good conversation and sharing our lives with others. So for twenty-two years we enjoyed and gave thanks for having found a mate for the last third of life!
This brings me back to the subject of stories from this time in life. For the past thirteen years I have created and told stories about the process of ageing and finding meaning in a time of life when my energy for innovation and bringing new projects to life is waning. It is more a time to reflect and preserve the work of the past. Much of the past thirteen years has been spent thinking, talking and writing about Grandpa Jung’s idea of individuation–that is, the idea that one’s life is about becoming who we are meant to be, not who others in our family or society want us to be. Here there is a strong sense that we all have gifts–I might say God-given- and life is about discovering these gifts and the path in life where they lead us. For me it was a life telling stories to children. With a fair amount of angst I found my way and followed my path in life.
There is another part of this journey through these last years of life. This is the eventual meeting with Death. We all have brief encounters with Death throughout our lives. For me it was the deaths of relatives, the most moving being the death of my mother, Ruby, that I mentioned above. I sat by her side and experience her last breath of life. But the sting of death then was ameliorated by having Nancy in my life. I could go home and talk with her about the experience.
Today I have no one to share my feelings about Nancy’s death, or maybe it is that I cannot talk with anyone about the experience I am having. For this reason, I will write about it and hope to find a measure of solace in the act of telling the story. This event in Nancy and my life began in June of 2018 when she received a diagnosis of stage four esophageal cancer. We immediately cancelled a planned trip to Scotland and a backyard storytelling performance set for that early summer. Nancy started a year of multiple chemotherapy treatments and one of radiation. Because of the growth in her esophagus Nancy struggled to find ways to swallow her food. Doctors talked about a feeding tube, but she preferred to be creative in finding ways to eat regularly–egg drop soup from the local Chinese restaurant was one of her eating solutions. Her doctors were amazed at her ability to keep herself strong and continue to live a fairly normal life. This struggle–Nancy did not like warrior language to describe her dealing with cancer–lasted for about fourteen months. It was during the first week in August of 2019 that she became dehydrated and weak from not being able drink or eat normally. Finally she made the decision to go to the hospital for care.
Nancy was in Doylestown Hospital for ten days. They began intravenous feeding and liquids to hydrate and nourish her body again. She gained some strength, but nothing like the normal Nancy. She was dizzy, had headaches and felt unsure on her feet. Finally, they decided to do an MRI of her brain and they discovered a tumor on it. Now there was talk about an operation, radiation and again the feeding tube. Nancy rejected the operation and radiation, but accepted the feeding tube and asked to go home.
During ten days in the hospital, I visited with Nancy three times a day. As the days passed, communication between us became more and more difficult. Nancy was agitated by the other patient in her room, an elderly woman who was hard of hearing. When her family came to visit, they talked loudly and long. I don’t think they were bad people, just a family like us trying to get through a difficult time in their lives. Nancy withdrew and seemed to not want to communicate with me. When she did talk, it was often something that I had forgotten to do or done wrong. This was so unlike Nancy, I knew I had to get her out of the hospital as soon as possible.
Finally the decision was made that she could go home under hospice care. Several hospice agencies would not accept her as a patient because of the feeding tube. Finally, Doylestown Hospital Hospice accepted her and I brought her home to 68 Clemens Road on August 15, 2019. The whole process took about six hours. It was a difficult day, but at the end Nancy was settled on a hospital bed in her study with her books and pictures all around her. Most important, it was quiet, with no roommate and family carrying on inane conversations.
So began two and a half weeks of caring for Nancy in our home. I could have hired extra nursing care to supplement the hospice people who came four to five times a week for half-hour visits. I chose to do the major part of Nancy’s care myself. Why did I make that decision? I felt that it was what Nancy wanted–though I do not think that we discussed it. Also, I do not like standing around and watching others do what I think I can do myself.
How can I describe the last two and a half weeks of Nancy Jo Anderson’s life? First, I will say that I can only describe it from the perspective of the one who loved and cared for her in this end time of life. Coming home did have a positive effect on Nancy’s disposition. For the first days she was more content. I remember her commenting on the beauty of the clear sky outside her window. I asked if she wanted to listen to any particular music or have visits from friends. Her response was not strongly negative, but she made it clear that she was content to be alone in a quiet environment. I limited the visits and started the practice of music on a player in the living room. This way I could enjoy the music and she could ignore my music as she often did during the twenty-two years that we lived together.
My challenge during this time was to learn some basic nursing skills on the fly. I thank the hospice nurses who were patient in teaching me. My first task was to learn how to measure the meds and get them into the feeding tube. This was a continuous process, every three to four hours around the clock. Because the feeding tube continuously pumped nutrients into Nancy, I had to learn how to control the pump to change from nutrients to meds and back again. The process was often complicated by the nutrients getting clogged in the tube and I had to flush the tube before and after the meds.
Two days into the hospice care we started to have problems with a leak at the point where the feeding tube interred Nancy’s body. This meant that we had to change the dressing around the portal several times a day. Here I will claim some credit for my own ingenuity. The dressings used by the nurses had limited ability to absorb the leaking fluids; I started to substitute a dressing created by cutting up a Depend disposable underwear. It was thicker and could absorb more of the leaking fluid. When one of the nurses saw what I had created, she said, “great idea!”
The nursing chore that I feared most was helping Nancy to go to the bathroom–particularly cleaning her after a bowel movement. Because Nancy had not eaten solid foods for more than two weeks when I brought her home, bowel movements were rare, but still important for the functioning of her body. For the first week of home care, Nancy was able to use a walker with my support to go to the bathroom and she did have one bowel movement. By the second week she was too weak to use the walker and we started to use a portable potty. Let us say that I was able to put aside my fears of helping Nancy to go to the bathroom. It was also during the second week that the decision was made to stop using the feeding tube and going to the bathroom was soon not an issue.
Nancy’s last days were made difficult for me the caregiver because she had a drive-the only way I can describe it–to sit up and get out of bed. One time I found her sitting at the side of the bed with her hands on the walker that I had place there. Eventually she did not have the strength to sit up, but she continued to reach out and try to sit up in the bed. The nurse described this as a form of anxiety and recommended an increase in medication for the behavior. For me, this behavior seemed an exhibit of Nancy’s will to live. It was about four days before she died, she whispered one of the last thoughts she shared with me: “I will die in two days.” The words were softly spoken and without an expression of fear or anxiety.
Nancy died on September 2, 2019 at about 5:30 P.M. That last day of body and soul as one, Nancy was calm though her breathing was labored. The nurse said that it was a collection of fluids in her chest and she recommended a pill that I could put under her tongue to help reduce the fluids in her upper respiratory tract. It was near supper time that I decided to try the nurse’s recommended medication. I tried to put the pill under Nancy’s tongue, but her tongue was not flat in her mouth. I tried spritzing a little water on the pill to melt it and then I went out to the kitchen to fix some food for supper. When I came back in fifteen minutes, I could still see the pill in her mouth but it had begun to dissolve; and more important, Nancy was breathing easier. So I went back to eat my supper.
It was fifteen to twenty minutes later that I came back to Nancy’s study. She was peaceful with her eyes closed, but her mouth was open. I looked into her mouth to see if the pill was dissolved. It was then that I realized that she was not breathing. I checked for a pulse in her wrist, but did not find one. For some time I sat quietly by Nancy’s side. You might say that I prayed, though I have no memory of particular words expressed at the time. You might say that I gave thanks for a peaceful beginning of her soul’s journey forward. After my quiet time, I called the hospice nurse and she recommended that I contact the funeral home I had pre-arranged to help care for Nancy’s body. Both the nurse and the funeral people soon came to the house and completed their duties.
Later that night, I went back into Nancy’s study and sat alone where the bed had been standing. I thought about stories that the soul lingers near the place of death after the physical body has been taken away. I encouraged Nancy’s soul to communicate with me. For fifteen to twenty minutes I sat quietly and waited. I had no sense of her presence in the room and went to bed.
Two days later, on September 4th, they cremated Nancy’s physical body. I chose to be present for this act of cremation. I took with me a journal to write in and a CD player with a recording of monastic chant–Nancy had heard this chant many mornings when she was waking up because it was part of my morning ritual. I did not realize the industrial nature of the cremation process. It was difficult to hear the chant over the sound of the furnace. Nevertheless, I said a prayer over her body before it entered the furnace, and then I sat and wrote down a list of happy times in our marriage. Again, I wanted to be aware of the separation of the soul from the physical body. For this reason I have placed Nancy’s ashes next to our bed and they will stay there until I inter them at Doylestown Cemetery after the celebration of life service on October 5, 2019.
Dreams have always had a strong influence on the decisions I make in this world. On September 14th I had a dream where Nancy and I were listening to music. She said to me in the dream, “turn this music into a story”. When I woke up I immediately thought of creating a documentary film about Nancy’s life. I wrote down in my journal this title: “The Music of Life”.
As I ponder this idea for a film about Nancy’s life, I think how her creativity was very much tied to musical communities–most importantly to Westminster Choir College where she worked for over forty years. She also was a member of the Episcopal Church and worked as an organist for several churches over the years. She was a member the American Guild of Organist. She held an office in the Hymn Society for several years and she sang most recently with the Bucks County Choral Society–in addition she did research and provided access to music for these organizations. I am sure that I have not covered all the musical groups she was related to during her lifetime. Nancy was gifted at working in communities. I am sure I will find more about this life of music when I create a film about it. If you have a story about Nancy–which you think I might not know–please share it with me. I want this documentary film to tell the story of how Nancy discovered who she was meant to be in the time she was given on this earth!