Beautiful Burden
I was in a cafe today when I suddenly felt supremely happy. I mean, filled with joy. I knew it was special. I savored it for a few moments. Then, I began trying to trace why and whence it came. I looked up. Yes, I was in an unusually pretty and tiny cafe. A jewel box of a cafe, in fact, with two big bay windows and a little arch-shaped window above the door open from the top to let in fresh-scrubbed air from weeks of showers.
And yes, the sun was shining, after days and weeks of near-constant rain, and that was very pretty. It was inspiring to see a scrap of blue sky, to see newly-budded green leaves lit up by sun, flaunting their color, and their shine.
It didn’t hurt that I had a near-perfect cappuccino in a little glass with a diminutive, flaky spinach, goat cheese, and sesame seed pastry to go alongside — a late, light lunch.
I knew it wasn’t any of these things.
I knew it was my visit with my dad a short while before.
He was asleep when I entered his room on the skilled nursing floor. I set up my computer to do a little work. After a few minutes, his eyelids fluttered open. I went to his side. He remained perfectly still, gazing up at the ceiling. His eyes were bright and alive. I maneuvered myself to get into his gaze.
I put my hand on his shoulder and said, “Hi, Dad.”
He turned his head slowly and looked at me. He looked around. His eyes were… merry. Joyous. He seemed amazed at all he beheld. He reminded me of my newborn son, moments after his birth, gazing intently around him, fixing his eyes with a startling focus on ours, and on the paramedics’ who passed him around, oohing and aahing. I have a picture of a lanky fireman crading him, looking down, Ryan’s eyes locked on his.
I said, softly, “Dad, how are you feeling?”
After a pause, he said, with energy and crisp diction, “Wonderful!”
My heart swelled painfully. Tears pricked my eyes, as they do every time I visit my dad. Except when they spill down my cheeks, as happened the last time I saw him, when I discovered him listing to one side in a jerry chair in a shadowed corner of the dining room, his left arm dangling to the floor.
“Wonderful.” It was the first three-syllable word — or possibly the only intelligible word — I’d heard from him in months.
A young woman I didn’t know entered the room. She introduced herself as an employee of Pathways, the hospice organization I brought on board a couple of months ago. She was warm and large and round, with a broad smile.
“Hi, Mr. White!” she said brightly.
My dad’s eyes moved her direction.
“How are you today?”
“Wonderful!” my dad said after a moment, his eyes as bright as a bird’s.
The woman laughed. “Well, that’s good to hear!” she said.
She said, “Can you hold up a finger?”
At this request, my dad looked bemused. Slowly, he made an attempt to free his hand, and thus his index finger, from the covers. The nurse helped him. She placed a little white clamp on his finger.
Ah, the temperature. She was taking his temperature and I think oxygen reading.
My dad fixed his eyes on the nurse. She glanced at him and smiled.
One of the aides entered the room. She was new. Small, fit, with dramatically drawn in eyebrows. She looked Puerto Rican and had an accent.
“Hi, Mr. White! I’m Tiffany!” she said brightly.
My dad turned his head slowly, found Tiffany with his eyes.
Amazement and delight filled his face. He might as well have been viewing God itself.
I watched this, amused, then said, “My dad loves beautiful women.”
Tiffany laughed gaily.
I moved from the foot of my dad’s bed to the head.
He said — and this I could not believe — as he hasn’t uttered a complete sentence in a long time — “You’re not leaving…?” A shadow crossed his face.
Struck and moved, I said, “No, no, Dad, I’m not leaving. I’m staying with you. I’m having lunch with you.” I took his hand. .
“Oh, good!” he said. Again, amazing cognition.
The hospice nurse changed the dressing on my dad’s ankle. She and Tiffany together changed the dressings on the backs of his hands and his forearms, where his thin skin is basically disintegrating.
An aide brought in a lunch tray. She placed in on the rolling table, and left.
Tiffany and the hospice nurse finished their work and left.
I sat beside my dad on the bed. The soup actually had an aroma, which was unusual. Usually the food smells like… nothing at all. The soup appeared to be a facsimile of clam chowder.
I fed my dad, using a teaspoon.
“How’s the soup, dad?”
“Good!” he said.
He ate the soup all up. He liked it just fine.
I lifted the brown plastic dome from the plate on the tray. On it were four little mounds of unidentifiable, pureed, food-like items. None offered any aroma at all, no matter how close I brought my nose. It was impossible to know what they were or had once been.
I fed my dad, who opened his mouth obediently, like a baby bird. Bite by bite, he ate everything up.
Then, he drank half a glass of thickened cranberry juice.
After lunch, I played The Carpenters on my iPhone. We listened to his old favorites, from when I was a child. My father closed his eyes and dropped into a state of pure listening, pure receiving. His face was a mask of emotion, hearing these old songs. He was like a dying man discovering a well in the desert. Drinking in the music. I took a picture of his intent face.
After four or five songs, I checked the clock. I had a haircut scheduled the next neighborhood over and had a 45-minute walk ahead of me.
I turned off my phone, leaned over, held both my dad’s hands in mine, kissed his cheek. He opened his eyes and said something I couldn’t understand. I leaned toward him to hear him better, and then, as he often does these days, instead of trying again to speak, he simply kissed me on the cheek.
Tears in my eyes, I cradled his head against my belly. I told him I’ll be back tomorrow, that we’ll have lunch together again (actually, it will be dinner today).
I left. I walked to Grand Avenue. I was early for my appointment. I found the little cafe next to the movie theatre, ordered my coffee. The sun peeked from behind rain clouds. The cafe filled with light. Sunshine splashed between fronds of green ferns and branches of baby spider plants.
And I was filled with a happiness that can only be called beatitude.
I knew it was my dad. I knew it was his love, his adorableness, his refusal to let his suffering touch me. He’s always been this way. I tell the nurses, if my dad ever says he has any pain at all, assume it’s excruciating. On a scale of 1 to 10, a 3 for my dad is a 20 for a normal person.
I tell them about the time my dad was pruning a menacing giant palm in the backyard of my childhood home when a huge load of trapped tree litter fell on him. Included in that litter were several terrifyingly sharp, spear-like fronds. One pierced my dad’s forehead, found purchase, and stayed there. My sister was there. She told me the story. She looked up and saw my dad with a spear quivering in his forehead.
He calmly walked into the house. She followed him, trepidation in her heart. He walked to the bathroom mirror, grasped the spear, and pulled it out. Blood burbled up in the hole. He calmly found the biggest bandaid he could, stuck it on, and returned to work.
My sister was astonished.
That became one of our favorite stories.
Stoic. That’s my dad. And we have lots of stories like this. About a decade ago, he was struck in the head by a rope the thickness of a man’s waist on the deck of one of the giant container ships he navigated out of bays around the world. One of the lines holding the container ship to the dock had snapped.
He was knocked unconscious, flown by helicopter to a hospital. The blow broke every bone in his face. When he showed up at my door a week later, the whites of his eyes were cherry red.
“Hi, dear,” he said, simply. A revenant, unabashed.
I often wonder if that accident is related to his dementia.
A couple of years ago, a date — upon learning about my dad’s advanced dementia and my visits to him, etc. — said, unforgivably, “Wow. What a burden.”
I will never forget that. Or how offended I was.
Somehow, the man remained a friend.
On Valentine’s Day, we had dinner.
I showed him a video on my phone. It wasn’t actually the picture I was looking for, but I saw it and shared it on impulse.
I pressed, “Play” and positioned the camera so my friend could see it.
The video showed my daughter feeding my dad cubes of canned pineapple. The setting was rather stark and dramatic. It was in the nursing home’s dining room, against a brown folding screen, a perfect backdrop. The quality was amazing. The light too. The video was incredibly sharp.
It showed my daughter, who is 17, patiently, rhythmically, feeding my dad. Her face is quiet, intent. My dad’s face is equally quiet, equally intent. He doesn’t look at or interact with my daughter. Simply receives the pineapple pieces and powerfully, effectively chews them, one by one, opening his mouth dutifully for each chunk.
The video had an explosive effect on my friend. He was deeply moved, painfully so. He put his hand up, as if to shield himself. “No, no more,” he said, to my astonishment.
His eyes were glazed.
But his tears were different from mine.
When I cry like this, it hurts. Yes, it does. It’s the very definition of poignancy. It’s piercing. But it’s bittersweet. It feels lousy, but it’s somehow beautiful and cleansing too.
My friend said something like, “You have a relationship with your dad… when I see this, and I don’t know them… it’s just.. too much.”
I was puzzled. I remain puzzled. Was he… repulsed?
Later in the dinner, he confessed it scared him and made him afraid for the future.
Yes. I can understand that.
I said, “If it moves you this much, can you imagine how it is for me? Every time I see him? My dad that I love?”
We had some kind of disconnect.
He sees my duties to my dad as a burden.
He sees facing the reality of my dad’s incapacitation as something to be avoided. At apparently all costs.
I see this time differently.
I am acutely aware of how fortunate I am to understand that this will not be forever. That it will be, in fact, far from it.
I will not “have to” (translate: get to) feed my dad his lunch forever. Or even very much longer, most likely.
I will not have to (read: get to) enter Piedmont Gardens every day of the rest of my life. Far from it.
In fact, in what is most likely to be a relatively short time, I will not even be permitted to enter Piedmont Gardens because I will no longer have a loved one there.
You see, it is a privilege to care for my father. It is a privilege to witness his incredibly elegant passage. It is definitely a privilege to have him model for me a parent leaving this life with what can only be described as the cheeriest disposition possible under the circumstances.
Ninety percent of the time, my dad is gracious, kind, and generous. He hasn’t walked in years, can’t really talk anymore, has a scary abscess on his ankle, and is basically deteriorating posthaste.
Yet, when you ask him, “Dad, are you in pain?” he looks momentarily confused, then shakes his head and says, “Pain? No. No pain.”
Whether that’s true or not, I will never know.
