Dementia and Distillation

Shortly after Donald and I learned that our ranch was at risk of being seriously impacted by a development next door, Donald was diagnosed with mild cognitive decline. Within two years, this diagnosis changed to Alzheimer’s Disease and vascular dementia. This was an unknown path neither of us had anticipated. Grief is a theme that runs through Fruits of Eden: Field Notes Napa Valley 1991-2021, whether that be grief for the loss of a beloved spouse or oak savanna, or the familiar climate we have always known. The following is an excerpt:

Dementia is a long slow death, one that allows everyone plenty of room for denial. At first you explain the little forgetfulnesses away. As we age, many of us forget a name, or can’t retrieve a word immediately, or occasionally forget what we were going to do when we walk from one room to another. We reassure each other: we all do this. But sometimes the little things happen more often and become bigger; agreements made, forgotten; and any attempt to remind the other, met with anger and distrust. Slowly you realize that you can no longer talk through disagreements. You have to avoid them. Gaps in memory are bridged by stories you do not recognize, stories that make the world make sense again—to your spouse. Bits and pieces of memory are collected and glued together, like the song of the mockingbird. Everything is there, only in new order. Assumptions become reduced to what they really are: assumptions. Everything is up for grabs.

Donald regularly searches for the cause of his cognitive impairment, which was finally diagnosed in the fall of 2016 as Alzheimer’s disease and vascular dementia. None of his relatives were known to have Alzheimer’s. He has had a sleep disorder most of his adult life, awakening in the early hours each night; lack of good sleep can cause dementia. Did that arc of our bedroom’s vaulted ceiling that he generated in the wee hours twenty-five years ago take its toll on his brain? What about his fall in 2006 from the flatbed truck? Our neighbor Dave called that morning, telling me Donald had fallen 4 feet onto his head while they were loading fruit bins. I rushed to the site. Copious amounts of blood gushed through the once-blue bandana Donald was holding to the top of his head. He wouldn’t let me call an ambulance, so I drove him the fifteen minutes to the local emergency room. As I drove up, several nurses and emergency room technicians who had been leaning against the hospital entrance smoking, rushed to our car, one having grabbed a neck brace, which they immediately strapped Donald into. As they struggled to get Donald’s tall body, stiff from the neck brace, out of our Subaru Forester, they scolded me for not calling an ambulance. “He didn’t want me to,” I told them. “You let someone with a head injury make that decision?” they countered.

He is used to being in charge. He planned and built a number of the parks in the East Bay Regional Park system, including Point Isabelle and Point Pinole, and designed emergency rooms, maternity wards, and updated special equipment rooms in several Bay Area hospitals. He knows how to get things done. I am used to deferring to this quality, as it certainly isn’t my skill. In building our home, I brainstormed with him, but he did the work. He mapped out our driveway when I said I wanted to build our home on the mountain, not on Dry Creek Road, as he originally planned. He followed the old wagon trail three-quarters of a mile up the mountain before turning into a forested area and blazing the last 500 feet to the house site with a machete, hacking through thick stands of poison oak and invasive Himalayan blackberries without cutting one tree. Donald not only had vision but also the ability to bring vision into form. He suffered no fools in the process, although he would deny this about himself.

A friend commented that Donald doesn’t have the personality for dementia, but who among us does? After being rightfully scolded that day in the emergency room, I consoled myself with the fact that I had refused to take him to St. Helena Hospital forty minutes north, an emergency room he designed and insisted I take him to. But this was all only a hint of things to come: having to make decisions he disagreed with, for his own good. For our own good. In dementia, not only memory goes, but also judgement as well.

It took many layers of stitches to repair the skin on Donald’s head, but nothing could repair what was happening in his brain. Statistics say if we live to be seniors, a third of us will die with some kind of dementia.[i] Dementia affects everyone; a pebble cast into a pond sends ripples to the shores. I seek the bedrock that holds firm through the earthquake of Donald’s brain, which no longer perceives and processes information in ways it always had.

But once you accept the neurological changes, you are on new ground, and it gets easier. It’s another kind of distillation. To survive with any semblance of sanity, you must distill away the impurities of assumptions and habits you have always had with each other and learn to live more often in the eternal Present. Old routines are boiled off, new ones developed, and then boiled off again as the disease progresses: Donald’s driving himself to his downtown office to manage our commercial property, which he had done since 2000 when he retired from his architectural office; my own private practice as an analytical psychotherapist—all of this has to be reevaluated on a regular basis. Is he still capable of making decisions about a lease with a tenant? Can he manage the bank accounts? Should he be driving at all if he gets lost in downtown Napa and falls asleep at stop signs? And concurrent with that: how much can I actually do if I have to take over the many tasks he used to do?

Chemist and philosopher Primo Levi wrote, “Distillation is a slow, philosophic, and silent occupation which keeps you busy but gives you time to think of other things. … When you set about distilling, you acquire the consciousness of repeating a ritual consecrated by the centuries, almost a religious act, in which from the imperfect material you obtain the essence, the usia, the spirit … purity is attained, an ambiguous and fascinating condition …”[ii]

When we first consulted Ray Dolby Brain Health Center in San Francisco in 2013, I was told that our marriage, as we had known it, was over. I rejected this, wanting to believe that Donald would get better. More sleep, change of diet, exercise—all of these might cure his forgetfulness and his increasing mood changes. But he got worse, not better, and the diagnosis changed from mild cognitive impairment to Alzheimer’s disease. As things stand now, there is no cure for Alzheimer’s. There may be in the future, but it will probably be too late for Donald. I am told not to count on it. We are left with the question, what essence, what spirit, what dark gift of dementia, do we distill in the vessel of our marriage?

[i] Alzheimer’s Association, 2017 Alzheimer’s Disease Facts and Figures,

[ii] Primo Levi, The Periodic Table, trans. Raymond Rosenthal (New York: Schocken Books, 1984), 57, 58.