End of Life No. 1 – The first interview in the ‘end of life’ series was conducted with my father. I couldn’t think of a better place to start than with the octogenarian minister I call dad. David Brostrom served parishioners in urban and rural settings as a Baptist minister, a role often that of a domestic missionary. In a separate series I ask him about that choice, and what may have changed in his thinking over the years. Everyone changes if they have the maturity to face their own thinking and I can say that Dave continues to evolve in his thinking. What is helpful to know about Dave for this article, in addition to fifty plus years of ministry, is that he has come through a couple of warning strokes. He struggles with balance sometimes, a sense of vertigo that never totally dissipates and has led to at least one damaging fall. Yet even in his early eighties he continued to visit shut-ins and others facing their own mortality in the role of Pastoral Consultant for a Methodist church.
In his own words, Dave fulfilled his commitment to follow Jesus all the days of his life. He completed six full-time pastorates in six states, through difficult and often discouraging circumstances. He/we lived on virtually nothing financially. Some of his best work, he contends, was as an interim pastor in Southern California, ministering to often troubled restless congregations who found themselves without a minister. When most would have retired, he spent twelve years directing the choir of the Temecula United Methodist church.
As a minister and community organizer, Dave was often concerned about quality of life for the elderly. He served on the board of the Visiting Nurses Association in his community. He also served on the advisory council of the office on aging for over a decade. In short, he was an advocate for the elderly and that acquainted him with many of the issues you and I don’t often think about. From the training he received at Northwestern Seminary in Minneapolis, MN in the late forties and early fifties, to the retirement community of Hemet, CA, Dave worked with individuals, families, and communities from the perspective of the pulpit and the bedside chair.
Of the memories Dave recalled in our discussions, I was most interested in his retelling of visits to a home for Alzheimer’s victims. I don’t fear death as much as I fear loss of the senses that make life worth living, so this story caught my attention and led to more investigation.
Some put the issue this way. Is there value in life when we can no longer reasonably participate? What if I know in advance that I will lose the ability to think or even make sense of footfalls . What then? I had a conversation with a woman in her sixties years ago in the basement of the Zen Center in Ann Arbor, Michigan. She was tearful. She had learned from practice that she would give up a lot to find spiritual peace, but she had recently been diagnosed with dementia. She was worried with letting go of her mind. What, if anything, can a minister or anyone else do for family and friends when every memory and association, even simple cognitive functions, are erased?
The answer I got was probably what anyone would imagine. “There’s really not much a person can do but just be with the victim,” Dave said. He described recently visiting a man who was ravaged by Alzheimer’s. “I came into the room and sat with this fellow and he just started talking nonsense. I could tell he was trying to communicate, speaking because that’s what he knew to do in the presence of a visitor, but nothing was cogent. Frustration came to this guy’s face as he struggled to make sense, and I had the feeling, I often do with these people, that he knew he didn’t make sense. That’s the horrible thing. Words were no longer useful or relevant. The value of simple human contact is the thing. Just being together is somehow blessed.”
In the same discussion we talked about grappling with pain at the end of life. “The pain of existence itself is not often addressed by Christians. We don’t want to deal with it directly. We focus on the next life. But pain, existential misery, is real.” For many at the end of life, they simply don’t know who they are, what they are doing, and then on top of that, they are struggling with pain beyond anything they experienced before.
He continued with his story. “This Alzheimer’s patient just kept talking a mile a minute, word after word, not even forming sentences. I’d never faced this exact condition before so I just waited with him, nodding sometimes, agreeing and saying things like ‘is that so’ and so on.”
At a point in the visit the talking subsided. The frustration was too much for this guy and he just stopped talking. Dave reported to me leaning forward and smiling. He looked him in the eye and said, “It’s OK not to remember.” The guy heaved a big sigh of relief and repeated the words, “It’s OK not to remember.” The patient became temporarily comfortable, relieved of frustration for a few minutes, but only temporarily. Soon this man returned to speaking nonsense and the visit came to an end.
Maybe that’s all anyone can do in a situation like that. If I become the patient, maybe someone will sit with me, preferably not in a room but on a porch, or under a shade tree. If I find myself unable to participate in basic human interaction, I may still feel safer, more present, if someone just sits with me on a porch.
There are certain undeniable existential realities associated with living and dying. All thoughts of transcendence aside, sometimes people lose the ability to make sense of anything. Memories and rationality can disappear long before the body expires. If this is my fate, will I want to stay alive? Are there situations where choosing not to live makes sense? Every religion says no, but I’m warning the reader that I can imagine myself not wanting to go on in some circumstances, and I’m not alone. Euthanasia is one of the most contested concepts among end of life issues.
One of my great friends, now passed on, was Sister Norma Harvey. She was a member of the Sisters of St. Joseph until her death. In the final years of her life she traveled between California in the winter, and Michigan in the summer. She told me of a neighbor in California who was diagnosed with Alzheimer’s disease. He was an atheist, she reported, and told her that when the disease got to some critical point he was going to take his own life. That’s what happened. He committed suicide rather than allow the disease to progress beyond some predetermined threshold.
I asked Dave what he took away from the experiences he has had with old age and death, and in particular with visiting dementia patients. His assessment echoed Norma’s friend. “It’s disturbing to see how quality of life can be stripped away. We can be robbed of everything meaningful long before death takes us. Witnessing the suffering makes a person think.”
Dave sent a book to me, written by Ira Byock, MD, a physician who spent many years with hospice. The book is called The Four Things That Matter Most: A book about living. It was a gift to Dave from the Visiting Nurses Association. I found the book to be somewhat repetitive, but the message, from a physician immersed in palliative care, is useful for all of us. Ira says simply that the four most important things to say at the end of life are: “Please forgive me, I forgive you, thank you, and I love you.” He offers numerous cases to underscore the importance of setting things right between family members and loved ones. This is not just for the benefit of the dying, but to make life better for living.
If you are religious, then setting things right is a spiritual mandate. The intersection of death and faith is not yet the focus of this writing, but if you are interested in that aspect of end of life, then Studs Terkel’s book, Will the Circle Be Unbroken? Reflections on Death, Rebirth, and Hunger for Faith, is a good read.
You don’t have to be religious to want to set things right at death. We should all hope to close the final chapter of our life in a way that makes sense of the whole. Buddhists say it’s not uncommon for life-long practitioners to let go of petty agendas on their death bed. Are we too busy with life to acknowledge that death is coming? Am I mature enough to face death without remorse? If I don’t live well I may face death prematurely. That’s the topic I address in the next segment of Write to the Bone.