By Matt Moser
“Death is hot.”
This comment, made in passing by the presenter of a talk I recently attended, while questionable in taste, is true. Death and dying are hot topics receiving much attention these days in popular media. Atul Gawande’s Being Mortal is quickly becoming the manifesto for a movement to change end-of-life care. Many other authors have written books on dying well, which they typically define in terms of living well, especially one’s last days. But the person with advanced dementia, whose death holds no possibility of being the conclusion of a self-chosen narrative, challenges the concept of dying well that is predominant in our culture.
The number of Americans living with Alzheimer’s disease is rapidly growing. As of 2016, it was an estimated at 5.4 million, according to the Alzheimer’s Association. Of these, 5.2 million are age 65 and older. By 2050, the number will nearly triple to 13.8 million, with some estimates as high as 16 million. For family, the emotional and physical toll of caregiving is great, with nearly 60 percent of caregivers rating the emotional stress of caregiving as high or very high and about 40 percent suffering from depression. Among caregivers, almost 75 percent report that they are concerned about maintaining their own health since becoming a caregiver. Ever greater numbers of chaplains will be needed to provide spiritual care for this vulnerable and often voiceless population and their families.
Bioethicist Howard Brody names aging and dementia as one of three topics that bioethics should pursue in the coming decades. The necessity of this ethical pursuit, which is also a spiritual pursuit, is captured in his book The Future of Bioethics.
“A narrative conception of dementia, in particular, seems on one hand absolutely essential to ethical understanding, and on the other hand extremely elusive. A first-person narrative of dementia, to the extent that it is coherent, invariably signals that the author is only in the very earliest stages of the condition, and so is unable to reflect for us what deepening dementia consists of. Narratives of advanced dementia, by contrast, are almost always the narratives of the caregivers, not of the patient. Those caregiver narratives can in themselves be extremely significant, but they do not answer the deepest ethical questions.”
For Brody, bioethics must stand on the side of the most vulnerable and act to protect them. As resources for dignified care for persons in the end of life diminish, the population of persons with advanced dementia, whose end of life can be lengthy, will become ever more vulnerable.
In The Wounded Storyteller, sociologist Arthur Frank provides insight for comprehending the reality of advanced dementia, with its absence of a first-person narrative. For Frank, “Ill people’s storytelling is informed by a sense of responsibility to the common-sense world and represents one way of living for the other. People tell stories not just to work out their own changing identities, but also to guide others who will follow them.” The most common story people tell and are told is the restitution narrative — a person suffers an affliction that interrupts normal life, a medical intervention removes her affliction, and she returns to normal life. While having its proper sphere, the restitution narrative cannot function when a person’s illness is chronic or a person is dying.
However, he writes, “Quest stories meet suffering head on; they accept illness and seek to use it.” The “communicative body” is the name Frank gives to the person, or “body-self,” who tells quest stories. For Frank, “The body itself is the message; humans commune through their bodies,” even when the body-self loses its ability to verbalize. The person with advanced dementia tells a story, necessarily beyond their will, of meeting suffering and accepting illness. The person with advanced dementia testifies, silently, to a fundamental human reality — humanity is vulnerability; our beginning and our ending is marked by total vulnerability.
When I was a Jesuit seminarian, I once found myself deeply disturbed by an elder Jesuit who was no longer able to recognize the body of Christ, that for which he gave his life. The presider repeatedly offered the host, “Bill, the body of Christ. The Body of Christ. The Body of Christ, Bill.” I later spoke with my superior, who suggested, “Maybe he had become the host.” Yes, he had in fact become like the host — emptied but for God, on whom he was utterly dependent. As Frank suggests, the ill body-self’s dependence on God is the realization of existing for the other. The person with advanced dementia exists for us, providing silent testimony to our vulnerability and calling us to respond. Our response will depend on how we hear this vulnerability.
Like other mental illnesses, dementia takes away the remembered person from their family. “That is not Dad,” or “Mom has been gone for a long time,” some families say. Many patients with advanced dementia are alone because their families cannot face the pain of their remembered parent being gone. But knowing that caregivers visit throughout the week is comforting for families who can find relief from the sense of obligation to see their loved one. For most families, knowing that they are not alone in bearing the long grief of dementia is consoling.
“‘Stay with us, because it is almost evening and the day is now nearly over.’ So he went in to stay with them.” These words from the Gospel of Luke continually inspire me in my care of dementia patients. Spiritual care for advanced dementia patients is reduced to the core of chaplaincy — being with them and assuring them through gentle touch and loving words of their eternal worth. I like to think that in these moments I help them to remember a little who they are in God. And if there is no remembering, I think they do feel loved. Some will not remember that you were with them five minutes later, but when you are with them they can feel loved, safe, and less alone in the world.
Dying well, when defined as living well one’s life and especially one’s last days, means living as autonomously as possible for as long as possible. This dying well can be a very meaningful experience for dying persons and their loved ones, but it cannot be the experience of the person with advanced dementia. In her silence, her dependency, her vulnerability, she tells a story about our human predicament, about being finite and about accepting definiteness, which is to say, accepting that the ultimate shape of our life and the line of our story are beyond our authorship. According to the predominant conception of dying well, the dying of persons with dementia appears devoid of meaning. As chaplains, we hear a counter-story. In deed and word we tell the story of God who bends low and is ever more present the lower God bends. In our telling, the person with advanced dementia, whose end of life is marked by total vulnerability, is cause for awe, wonder, humility, and reverence.
Matt Moser, BCC, is a chaplain with Fairview Home Care and Hospice in Minneapolis.