Living with Dementia and Facing the Future

Sunday, June 22, 2014

photo by Steve Edelstein, May 2014

I met David Thorndike in 1984 in Cambridge, Massachusetts, after moving there to attend Harvard Divinity School. We met at a yoga class taught by Angela Farmer and Victor Van Kooten that June; and over the course of the following year, we would see each other at local “Dance Free” and “Dance Friday” events. Nine months after meeting, David asked me one night if he could walk me home from the church where we regularly danced in a smoke- and alcohol-free environment. I said yes, but that he couldn’t “come up to my room.” I sat on his knee in the backyard of the house where I was living in Cambridge. A few days later, walking along the Charles River at dusk, I asked how old he was. I was then 35, and assumed he might be in his mid-40s, for even then he had a youthful countenance and demeanor. When he told me that he was 58, I was shocked. We began living together a few months later, in September 1985. After I completed my Ph.D. at Harvard University in 1991, David moved with me to Washington State University in Pullman, where I taught until 1998, then moved again with me to Boulder, as I began a long tenure at the University of Colorado. We bought a house in Jamestown in December 1998, and lived there until the floods of September 2013 washed away so much. That is a snapshot of our outer history.

The inner history is much more complex: a narrative of love, deep companionship, and healing. The transformations of aging have become the focal point of our relationship now, at least for me. David lives in an eternal present, where even the distant past has begun to fade. My primary spiritual task at this time of my life, as I prepare to turn 65, is to practice the present-moment mindfulness that Thich Nhat Hanh has so vividly described. Decades of yoga and meditation have prepared me, at least partially, for this part of our journey together.

I have been actively tracking David’s cognitive change for two and a half years – keeping a journal of what he does and says. I told his neurologist that we are in the fourth year of significant changes in his memory and reasoning. David is in his 89th year, a fact that continually amazes him. His increasing dementia is therefore not early-onset Alzheimer’s, but the decline of rational faculties that occurs for more than 50% of elders his age.

I have always treated writing as a way of knowing. Like Flannery O’Connor and Henry Miller, I write to find out what I think. I write to grapple with complicated feelings: trauma and grief, perplexity and happiness. Just now, preparing to move out of my university office, I wonder what to do with the journals I have kept since 1968. Like photographer Edward Weston (1886-1958), who destroyed virtually all of his writing prior to 1923, shall I shred or burn my journals? Shall I save them, but for what purpose? I wonder if I should simply stop writing now. I guess this latter is not an option, for I rise each morning to record the days past and to muse about the days ahead – to track changes and significant shifts in my own and David’s lives. Rachel Hadas noted near the end of Strange Relation, a memoir about her husband’s early dementia, that she was able to weather crises by writing about them. First of all, writing helps me. Reading about others’ experiences has also aided me: practical resources such as the well-known The 36-Hour Day by Nancy Mace and Peter Rabins, and remarkable narratives such as Olivia Hoblitzelle’s Ten Thousand Joys and Ten Thousand Sorrows, and Katy Butler’s Knocking on Heaven’s Door.

Pressing questions beg to be addressed:

• What does it mean to care for another sentient being?
• How do I maintain my own self-care? Living through this process with David for the remainder of his life, this question may actually be the most important of all.
• Who is David now? Who was he as a professional and private man? What remains?
• What does he want and what is possible? This is especially pertinent in terms of keeping him at home versus placing him in an appropriate facility. There are many euphemisms for this process, and it is difficult to find the best language.
• What is the role of our respective families? In what ways do they want to be involved with David and me?
• How can I honor what David wants, while still being a responsible caregiver? David consistently refuses drugs; and even though his senses are declining, he refuses hearing aids. Whose best interest am I tending to each day?
• What does it mean to say that David is a “demented person”? Understanding the dementing process takes determined critical intelligence. It is customary to say “When you’ve seen one person with Alzheimer’s, you’ve seen one person with Alzheimer’s.” So, what will happen for him, and how will I cope with the unexpected?

And I will reflect about other significant issues:

• Spiritual practice, including meditation, prayer, and ritual. This includes David’s own spirituality. He has been a spiritual seeker for decades, especially in Buddhist and Sufi traditions, but currently claims to be an atheist.
• The roles of ritual, including rituals of everyday life and rituals of grief and loss, death and dying. Sleep, food, reading, exercise, and seeking meaningful activity are the core of David’s daily life right now. My Buddhist practice is defined by both individual and group rituals. For instance, multiple times each day I engage in “doorway” practice, which I learned from Olivia Hoblitzelle. It is a unique way of facing the uncertainty of death.
• The potential role of other “critters.” There’s Tucker the Cat, abandoned at the house we rented immediately after the flood. He now occupies the detached garage. This morning, for the first time in the 4 ½ months since bringing him to our new house in Longmont, Tucker came to the back door when I called him. David and I take turns feeding and caring for him. I’d like to bring a dog into our household too, but many logistics remain, especially working out what breed and what training would be necessary for such a companion.

 All of these questions and issues pose an ambitious agenda for the days and weeks ahead. May my musings be of benefit to others.