Tom Montgomery Fate, current Resident Scholar at the Collegeville Institute, is working on a spiritual memoir tentatively titled Detours of Intention. The following is an excerpt from a chapter dealing with his father’s death from Alzheimer’s.
On the day my father died he looked as run-down and parched as the tiny Nebraska farm he grew up on during the Depression. Just as the dust storms of his youth had stolen the thin, rich topsoil from their farm, so had the quiet storm of Alzheimer’s swept away his best thoughts and dreams from the landscape of memory. Nothing could grow or take root anymore in that barren place. And this drought would not end.
A week earlier, my two older brothers, Paul and Rob, called and asked me to come to Saint Paul, Minnesota, where they live, and where our dad was in a care center. It was time for hospice. Paul and Rob had managed the day-to-day slog of dad’s decline for two years—the maze of doctors and caretakers and meds and how to pay for it all. A few months prior, when dad escaped his room and locked himself outside in his underwear in a snowy parking lot on a freezing January night, they moved him to a memory unit.
That was a sad place. All the windows were locked and alarmed and the entrance door required a digital code. Without the rudder of memory, my father and the nine residents in his unit all seemed adrift in a tiny boat on a wild, infinite sea—yet unconcerned about finding their way back to shore. Whenever I visited and had dinner in the memory unit, I wondered how I appeared to them: a dim light off in the distance toward which they might row for a few seconds? And I wondered what I would do, if it were me, and if I could still decide. That is, if I couldn’t recognize my family or friends, or remember what and who I loved, would I want to keep going?
When he moved to hospice we didn’t know how long dad would live—a few days perhaps. On the day he died, we all took turns sitting with him. That afternoon, I sat by his bed, swabbed his dried lips and mouth with a small blue sponge, and stroked his face and arms. His eyes closed, his breathing unsteady, he could barely swallow. Yet he still knew the language of water and of human touch. Sometimes he would startle awake for a minute out of his sleep and look at me with concern. I tried to comfort him but had no idea what those weary eyes could see.
So I just sat there in that little room with the gaunt shell of his body, and his last whispers of thought, and tried to pray. But I’m not good at prayer, so my mind began to wander. I thought of the memoir I’d just finished reading: The Presence of Absence. At age 81, Doris Grumbach writes of an epiphany she had at 27, and describes her life-long attempts to relive it — to rediscover the presence of God. After long presuming that all “religious experience” was like her epiphany, she stumbles upon psychotherapist James Hillman’s idea that “absence is the first form of knowing.” Finally, she accepts the possibility of a God even without the “proof” she has been seeking.
Her search for proof didn’t interest me as much as the paradoxical title. While “the presence of absence” may describe God, it better describes Alzheimer’s, a disease that leaves a person physically present but mentally absent. And we had all been watching it take hold of dad for several years. The growing absence: the widening gaps between thoughts, the nonsensical unfinished sentences, the angry outbursts at nurses. Then, finally, he could no longer dress or feed himself, and his mind began to seem like an empty church: dark and cavernous yet expectant.
The rest of the afternoon, a cold rain blew through the trees, and I kept looking out dad’s window and wishing that he could too. It was Cinco de Mayo. Everything was green and budding, trying to be born. Spring: the season of re-membering, when all the parts—the humus and detritus and water and sunlight and carbon dioxide—all come together again to make new life from decay and death. It was dad who first told me that the word religion means “to tie together again.” For him, it went beyond holy books and holy wars and holy buildings; a religion included all living things. Everything belonged to the cycle of Creation. Though it was not belonging I felt that day; it was the fear of separation.
Since dad had been a pastor for almost 50 years, he’d spent a lot of time in care centers like this one — doing what I was —sitting with his parishioners in their last days and hours. But the longer I sat there, the more lost I felt, and the more I wondered what he would have done if he were me. Finally, I put one hand on the warm dome of his skull and the other on his dry, stubbled face, and cried. Mainly from grief I think, but also from gratitude — for how those last moments had sprawled out into an entire life.
Then I placed my hand on dad’s chest and felt the rise and fall of a lung, and put the other hand on his heart, and felt the faint burble of an 88-year-old pump, and the limits of blood and flesh and bone, of body, and the limits of mind, of the electro-chemical charges that create thought, emotion, memory, which got me wondering about spirit, and how these three parts of a person converge, or don’t — in life, and in death.
Somehow the idea of “spirit” turned me back to Grumbach, and the presence of absence. I wondered how dad might respond to her questions. How many times had I heard him say it: “Doubt is not the opposite of faith, but a part of it. The point of faith is not answers, but meaning. Live in the questions, in the mystery.”
Then dad stirred again. His eyes opened, and they seemed less distant. He slightly turned his head toward me, lightly squeezed my hand, and in an airy, labored whisper said “luf” or “luh” or “huv.” Or was it “love”? He said it twice–with much effort–and I sensed a faint spark of recognition, a presence. But who can know for sure? Then his eyes closed again, and he fell back asleep. An hour later, my third brother, Ken, arrived from Iowa, to relieve me, and I drove off. That night, after I arrived back home in Chicago, Ken called to say that dad had died.
While preparing a talk for the funeral, I wondered about my father’s last word to me. I’m not certain that it was “love.” I don’t have it on tape along with a linguistic analysis. But I want to believe it was. And belief is a different kind of knowing. There is no proof. It’s subjective, like most of our re-membering. Our perception of our past lives is an ongoing act of interpretation which involves the whole of our intellect, including the imagination.
I’ve had to learn this as a writer, but it was never more clear to me than while watching my father’s memory trickle away. The things he lost that mattered most were not dates or facts, not the provable or the certain. Not the days of the week, or his social security number, or the number of congregants in the last church he served. What mattered was the wild swirl of stories that he carried — that holy reservoir of images and moments, of love and loss — that told him who he was.
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Karen Crutchfield says
Tom, I am so sorry for your loss. Thank you for this beautiful reflection. My husband and I cared for my mom, who had dementia, in our home for about 18 months. I also work daily with people with cognitive impairments of all levels. For me, it helps to share our bewilderment at this mystery. And in some way, the understanding of others assures me that God understands too. I will look forward to your book.
Tom Fate says
Thanks for your kind and insightful words, Karen. Wishing you much hope in your work… Tom
Marjorie Stelmach says
Just a simple thank you. I’m currently living this process of watching the absence grow greater in a presence I love. The clarity and generous honesty of this essay give me strength.
Tom Fate says
Thanks for your kind words Marjorie. Wishing you some hope and solace amid that growing absence… Tom