My wife and I spent most of the day at the bedside of my father-in-law, who is in the end stages of a long journey through dementia and now pneumonia, which will at last consume him. He has suffered, losing control of his body and then his speech. Fear, anxiety, and hallucinations—mixed with occasional moments of tender lucidity—have made up the bulk of this last year of his life.
He has moved repeatedly from facility to facility, all of which seem unable to handle him and his unique descent in senescence. Now he lays in a bed in a facility specializing in memory care, oscillating between moments of peace and abject terror. At times he screams. He clutches at the air. At other times he seems resigned, his eyes graying, giving in to unconsciousness.
Nurses dote on him. They love him. They gently pull his beard and hold his hand and kiss his forehead. They have been wonderful. They have done everything asked of them and then some.
But nothing can change the fact that he is slowly drowning. I do not know that he will live to tomorrow. Part of me hopes he does not.
His name is Philip. He is 65 years old and looks like Gandalf, sharing his mischievous eyes and generous heart. At one time he was 6’4”, though not anymore. For much of his life he had a gray beard that fell to his stomach, though one facility felt it was dignified for him to go without it. They were wrong.
He spent 30 years as a surveyor and grade setter, among other jobs. He was a member of the Operating Engineers union, one of the few strong unions remaining in this country. He would proudly point to freeways, overpasses, dams, and other infrastructure he helped build. He spent 30 years working on his feet, working with his hands, both attributes that remain clear as we sit before him tonight.
His feet are coarse and gnarled at the end of thin legs that have finally given out. But his hands have not waned a bit. All of his aids marvel at his grip, at the strength in his hands. That grip tells us he is still there, it conveys an urgency that his frail body betrays. We remain unsure what he needs to say, but he is fighting, working hard as he always has. There is a job to be done, even though my wife and I see an easier way.
Last night, I called my father to ask if he would provide a priesthood blessing to Philip. Unlike the more common blessings of healing given during sickness or before surgery, this was to be a blessing of release, a means of helping Philip on to wherever that next stop may be. I am not a religious person. I don’t know that you’d even call me spiritual. I was raised in the Mormon church, though I have been inactive for 20-odd years. But my rejection of the institution has never prevented me from calling upon my father in times of great sickness or fear for just such a gesture.
At these times, we all want community—a simple touch, an affirmation. At the time of my own cancer diagnosis, nothing calmed me more than his reminder that this, too, shall pass. We wanted the same for Philip. This is about empathy, not ideology. One another is all we have. We need to work with what we’ve got.
We have turned his bed to the window. He was an outdoorsman, an avid fisherman. He loved trees and was furious when we pared back the fruit trees on his property that he’d allowed to go wild for years. He treated the one-eyed squirrel that graced the walnut outside his sunroom window like royalty. Allowing him a window view is a small gesture, but an important one.
Outside, it is snowing. We are five days into the worst inversion of the year. The cap of pollutants over the city is locked down tight and we are all sick. Our throats sore and scratchy. I check the air quality index. A red air day, results from pm2.5 pollution levels of 101 or higher. The index reads 169, then 171, then 176. As the storm moves in and the snow accumulates, that number begins to decline. As a series of storms moving east from the West Coast moves in, the cap will dissolve. Perhaps by tomorrow morning we will again see the Wasatch Mountains beneath blue sky.
Recently, numerous studies have indicated that rates of both Alzheimer’s and dementia, including their early-onset varieties, are increased by exposure to high levels of air pollution. One of Philip’s greatest sources of pride, his contributions to the ever-growing infrastructure of Salt Lake City, may have helped usher in the very disease that has drastically shortened his life.
America, you are losing a gentle man who did the most American thing of all—lived his life on his own terms, but always with an eye towards the needs of his family, his friends, his neighbors.
Unlike many patients, Phil’s dementia left his long-term memories largely unscathed for most of this journey. He recalled bike rides from 30 years prior, missed pets long dead, pointed to the works he helped create, even when he could no longer articulate what they were. If nothing else, going through this with him has taught me the deep value of memories, no matter how tragic.
There are two that I hope I’m lucky enough to carry with me for the rest of my life. The first is of stopping for lunch during a road trip with one of my dearest friends at one of the countless glaciers that used to line the interior of Alaska. Far up on the glacier we could see two black dots falling repeatedly down the face of the ice. After a moment I retrieved the binoculars from the car and realized we were watching two young black bears playing, sliding down the glaciers and gleefully rushing back up the slope again. I have no word for the emotion I felt watching them in their complete obliviousness to our presence.
The second is being eight years old and coming home from a garage sale I’d “run” with my best friend down the street. I rushed into my parents’ room to show my dad the fistful of dollar bills I’d earned. He had just received a phone call informing him that his father had succumbed to Alzheimer’s. I knew something was wrong and stopped mid-sentence. He simply picked me up, smiled, tucked the money quietly in my pocket, and held me close while he wept. He did nothing to hide the emotion. He spared me nothing in that moment.
America, in the coming days and months and years I want you to remember that this kind of spontaneous gentleness is everywhere. It is abundant and it is affirming. It is my father-in-law and my father, and two bears learning the ropes of a brutal and joyous world.
It will not always save us, and it will not save all of us, but it will shield us from the seemingly simpler paths of cynicism and apathy.
Yours in the journey,
Header photo of snowy windows by JotDeWa, courtesy Pixabay. Photo of Michael McLane by September Erickson.