Prolonging Loss is an intimate log of thoughts and memories as Tina’s father drifts further and further into his Alzheimer’s.
There is such a thing as anticipatory grief. It holds you in its grip for as long as the terminal disease lasts. Dementia grief waxes and wanes as your daily life moves forward, worsening as the symptoms do, as you mourn your loved one bit by bit. You are captive in no man’s land. You’re grief-stricken but also caring, sometimes hoping, other times denying. Throes of love and passion, of belly-aching laughter with friends come less frequently. You harden. You wonder if the clouds will ever part. You wonder if this pre-grief is worse than grief itself. The natural cycle of loss is more linear; as painful as it is, there is loss, there is grief, there is moving past grief. In prolonged, anticipatory grief the sadness lingers. Sometimes for years, decades even. It brings families together; it tears families apart. There are infinite ways to tell this tale; this is but one.
The Other Guy
Following his diagnosis in 2011, my father had several good years. He was able to drive and function, masking his lapses with humor and deflection. He exercised daily, ate walnuts, seeds, turmeric, and other said-to-be-brainy foods. He played word games and challenged everyone at his post-retirement job in the Dartmouth gym to the daily scramble.
During this phase, notes spelled out phonetically and cards ill-aligned in Solitaire struck like a gut punch. If we bumped into someone Dad knew whom he had trouble placing, he’d point to me and smile, “There’s something going on with me. Talk to her, she’s terrific. Tell him, honey.” And I would. Pats on the back and conversations would ensue and be forgotten before we got to the car.
Food and football became unimportant for the ultimate home chef and legendary coach that was my dad. His appetite never waned but his Stanley Tucci-like zest for flavors and memories tied to homecooked Italian food dissipated like salt on an Amalfi lemon.
The last football game we saw together was on a freezing October afternoon six years ago. Dartmouth was playing Harvard at home. My brother, a former football player, kept trying to engage Dad in the game. Instead, Dad was happily fixated on the visiting team’s band in the stands with their cymbals and trumpeters. ‘Look at them! Aren’t they terrific?’ While I enjoyed laughing with Dad each time a drummer drummed, my brother was crushed; their football connection was no longer.
The filters began to fall away. Thoughts he never would have vocalized surfaced and poured out of his unfettered mind as we drove down to my sister’s; things he used to deem too heavy for me to hold now remain lodged in my brain. When it’s not emotionally devastating, it’s fascinating to see thoughts unravel like endless spools of thread, not only open but vulnerable to the interpretation of the listener; it’s like a decade-long game of Telephone. Ever the philosopher, as language falls away, profundity remains. In a video I made in 2019, the man whose license plate always asked “WHY” mused, “Who wins? Who needs? Who has to? Make sure the whole world is together.”
Over the years Dad has progressively slipped away into his mind, a baffling web of firing synapses that alternately entertain, confuse, and throw us into despair. As he sinks deeper, his dashing blue eyes reveal another self: “the Other Guy,” I call him. We love the Other Guy and posit that our father would, too. He’s as happy as he is unaware.
In the summer of 2021, I arrived at his home in Vermont after nearly two years of forced separation due to the pandemic. Like many, I had been Corona-catapulted into joblessness. Alone in my loft in Rome with no balconies to sing from, I took pride in my 7000 steps per day (that’s 62 steps from the door to the furthest window roughly 112 times). I amassed fantastic playlists; created a Virtual Decameron[1] on Facebook; sorted through old letters. I cooked and cleaned. I followed the government’s daily press conferences and published a series of articles on the situation in my corner of Italy for my hometown newspaper. I did yoga and meditation online. I resisted bingeing on series and snacks. It would only be upon exiting this heightened state of emergency that I would begin to feel the traumatic effects of lockdown. For the first time in my life, I was packed and ready to go several days before our flight back to the US.
When I walked into my dad’s dining room, I hugged his wife, taking care not to crush her slight frame. We’d seen each other only on FaceTime during the pandemic. Distance and isolation had taken their toll. Dad hardly looked up from his drawing.
For several years now he has drawn colorful patterns with Sharpies in such repetitive linear strokes that he has a permanent open sore on the side of his right pinky, his blood sometimes fusing with the colors on the paper. The beguiling color combinations and shapes have replaced the poetry and prose that once flowed so easily. In a way these thousands of drawings comprise the Great American Novel my dad composed in his mind over a lifetime but was too inhibited to write. Inhibitions banished, the Other Guy takes immense pride in his art.
When he finishes, he looks up at us. My daughter is with me. He holds up his drawing and asks, “you like that? Isn’t it terrific?” before taking another blank page and starting all over again. He is unfazed by our presence, just as he was unfazed by our long absence.
I’m reminded of the one time I let more than a year go by without returning home. At the time, he took me aside and said, “don’t ever let that much time go by again.” That was my father. The Other Guy doesn’t know his daughter is in the room. The filial concept eludes him now, the only relation he recognizes is his wife (whom he calls Mommy), and that between himself and his mother and father whom he is utterly convinced await him.
Later that same afternoon, he’ll grab my hand and look me in the eye, “You’ll take me home, right? You know they’re waiting for me.” Then he’ll look suspiciously at the others in the room and whisper behind his hand, so they won’t see, “Let’s go!” Throughout the summer, this pattern repeats itself, often several times an hour. Sometimes pleading, sometimes agitated, occasionally aggressive.
When it gets really bad, when not even the newest, brightest Sharpies are able to ‘redirect him,’ I put him in the car telling him I’ll take him home. I wind up and down the dirt roads with him next to me. As he looks around, he speaks to me in fuller sentences than usual, raising my hopes with a clarifying, “The thing is…” But then, sadly, the thing escapes us both. He mimics my opening of the window by doing the same on his side. “Hey, look at that! You put that there, so I put mine there, too,” he exclaims victoriously. By “that” he means air and by “there” he means the space where the window used to be.
Bored with windows, he discovers a pristine paper towel, folded several times over, in his pocket. He takes it out, unfolds it and shows it to me. “Isn’t it terrific? I keep it right here. I have others, too.” He fastidiously folds it back up and puts it back in his pocket. The fixation with paper towels started several years ago. Once, when I took him for hot cocoa at a local country store, he had to use the restroom. Back then he could go in on his own as long as someone stood outside the door. When he was done washing his hands, he opened the door and excitedly whispered to me, “hey, come take a look at what I found!” There on its own holder was a new roll of paper towels. “Isn’t that terrific? You want one? Take one. They won’t mind.”
As I drive, the man who has replaced my dad reaches for my hand and takes it in his own. He kisses the back of my hand, my wrist, my forearm, turning my hand over again and again between both of his. I am reluctant to take it back but more reluctant to drive off the mountain, so I place it back on the steering wheel. He’s happy. He has no idea who I am, but he knows I am important to him. When we’ve driven a 45-minute loop of backroads, I signal to turn. “Where are we going now?” he asks. “Home,” I say. “You wanted me to take you home. Here we are.”
“Oh, goody. Thank you, thank you.”
Our Father
Our father believes that literature is the ultimate mirror to the human condition, “and what are we, after all, if not conditioned humans?”
Our father quotes Shakespeare, William Faulkner, and Yogi Berra in equal measure. Through him, all those in his orbit learned to laugh and see each other as “just players on a stage.”
He’s a first-generation degree seeker, a second generation Italian-American, a War Veteran and a maverick from a family of builders who got his Master’s in English Literature on the GI Bill.
He exalts intellect and the imagination, warns of the evils of ego, and extols the virtues of forgiveness, empathy, peaceful cohabitation.
Our father is always working on his unfinished manuscript. He jots down poems on cocktail napkins and could fill a book of original aphorisms.
He promises always to spend more time, try harder, be more connected, more present.
He procrastinates. Profusely.
He’s quick-witted and irreverent. To our “Oh my God!” he responds, “yes, my child?” To “Oh God, Dad,” he replies, “that’s redundant.”
His laughter and joke-telling enliven the room. At every family event, his table is inevitably the table.
Away Again
I walk around the little hamlet of Ringland where I’m living – just east of Norwich in the County of Norfolk, England – decluttering my mind so the ideas jockeying for a position on the page arrange themselves in an orderly line. The ruralness of it reminds me of childhood in Vermont; even after so many years of living in Rome, retreat to silence and the dark of night comes naturally to me. My dad’s procrastination coupled with some deep-rooted questions of self-esteem mean that he will never be widely read. This year spent writing in the company of writers is an attempt to reverse that pattern. I carry him with me on all my walks, my exploratory drives, as I cook, when I cheat at Solitaire. He is ever-present during this remarkable year, a gift from the uncertainty brought on by the pandemic. It’s as if we’re writing together.
Just recently, my family reached another phase, one of the last phases to this prolonged grief. My father was placed in a special ‘memory care’ unit of a nursing home. He is safe and his needs tended to while his wife and caregiver gradually remembers how to eat, drink, and sleep again. He stands less tall. His range of movement is challenged, and he’s groggier.
But his twinkle and charm remain. The day after taking him in, my older sister wrote: “Yesterday went a bit better than expected. One of the nurses told him he was handsome, and he responded, ‘Tell me more.’”
[1] https://www.facebook.com/groups/239164223779075 The VirtualDecameron was based on Boccaccio’s 14th Century collection of short stories. Our group of 125 members submitted art and stories, songs, and memories around a daily theme.
