Dad was a person with Parkinson’s Disease.  We may be tempted to comfort ourselves with thoughts like, “he had the disease, but it didn’t have him”.  While that may have had some truth in it in the first five years or so, it did not as the disease slowly, insidiously, destroyed the dopamine in Ed’s brain.  To minimize, to deny, is a slippery slope at the bottom of which is acquiescence, we concede the battle.  We cannot concede the battle because dad has died.  There are people in this room who have Parkinson’s Disease, who will get Parkinson’s Disease, who have loved one’s with Parkinson’s Disease.  I sit on an advisory council with men and women my age, some a bit older, some younger, who have Parkinson’s Disease, or are caring for someone who has Parkinson’s Disease.  I invite you to make the same promise that I made to Dad, that I will continue to make life better for people with Parkinson’s Disease, to support research for more effective treatment and to find a cure.  Even in death, Dad is with us in these efforts.

In addition to impairing movement, and a host of other bodily functions, Parkinson’s Disease often robs a person of cognition; it spawns hallucinations, delusions and psychosis.  A few years ago I sat with Dad during a time of intense cognitive impairment, and became somewhat haunted and distressed by the question, “are we our brain?”  If dad’s character, his integrity, his graciousness, his intelligence and wit lie in the chemicals and neural pathways of his brain and these are depleted and twisted, where then will I find his essence?  In truth, my question was, “where is his soul?”  I was troubled, off and on, by this question, about the nature and place of Dad’s soul in a body wracked by a neurological disease, until Dad began actively dying.  Only in the last few days have I arrived at an understanding.

I see that as my mother, myself, Avi, Harry, Esther, Dolly, Ryan, Christine, Steven, Dr. Scicutella, Caitlin, Aaron, Deb, Dimna, Dana L., Adolfo, Anthony, Andy and so many others cared for dad’s physical self, we cared with unwavering love and respect, for his spiritual self as well.  We cupped Dad’s soul in our hands as we bathed him, massaged him, held his hands, made jokes, laughed at his jokes, hugged him, held him, fed and gave him drink. We touched and nurtured his soul every time Dad invited us into his altered reality and we joined him on fishing trips, herded elephants in Africa, built cathedrals, flew to Japan for wrestling tournaments, and restructured hospitals and rehab centers.

Where does Dad’s soul reside now?

Dad is of the water.  His spirit is floating on the soft, glistening, ripples of waves as dawn breaks over the Chesapeake Bay.  His spirit wafts down the Potomac River and blesses boaters and fishermen.  Dad’s spirit hovers over the crab pots of Assawoman Bay in Delaware, rejoices in the catch and savors the smells and tastes of steamed crabs drenched in Old Bay.  The fingertips of his soul dip into the waters of Mud Creek which meandered through our backyard in Iowa, and into the Mississippi River, sensing the strength and unpredictability of its currents.

Dad is of the Earth.  His spirit walks the shores of Dares Beach, Maryland and reaches down for driftwood, shells and shark’s teeth embedded in middens of sand.  His spirit sits on the beach in Delaware gazing at the rolling waves of the Atlantic and lets handful after handful of sand sift slowly through it’s fingers, relishing every grain.  His soul digs deep into the rich dark earth of Iowa and entwines with the roots of shag bark hickory trees.  His spirit drifts over the limestone quarry of Davenport, Iowa and takes pride in his accomplishment as a businessman.

Dad is of the sky.  How he loved birds and wild fowl.  His spirit flies with the Great Blue Herons, Osprey and Egrets of the Delaware bays, with the Seagulls and Bald Eagles of the Chesapeake waterways and with the Eastern Gold Finches, Red-tailed Hawks and Barn Owls of Iowa.

Dad is of the air.  He is around us now and always.  We can breathe in the king of one liners, the inventor of the group hug, an activist, a leader, a man who defined the vagaries of his children’s lives as “it’s a learning experience.”

We can breathe in the self proclaimed “vice president of mischief”; a man who once sat on the beach in Bethany, Delaware, holding a bag of roasted peanuts, and with superior hand-eye coordination shot them like darts onto the arms, legs and shoulders of those of us sitting around him.

We can breathe in the spirit of a man who loves his high school sweetheart, his family, his caregivers and his friends.  We can breathe in his graciousness in the midst of suffering, his daily gratitude towards each and everyone of us that cared for him and loved him.  Dad was certainly one of the most loving persons in life and as his soul encircles us for the rest of our lives, we will continue to feel his love, and to love him.

“Apathy,” Top Chef said, “is a symptom of Parkinson’s disease. Most of my Parkinson’s patients suffer from it. You’re not lazy, you’re apathetic, and you have to fight the apathy.”
Top Chef said this to my dad, my mother and me, at our first meeting, over a year ago.

Top Chef is dad’s neuropsychiatrist. That’s her nickname. She earned it when she said, “If we’re all going to get along you need to know I have to be the only cook in the kitchen. This means, no one changes meds, no other doctor orders tests, no one starts any sort of intervention without my permission.”

My mother and I immediately disobeyed her. We gave dad an extra Sinemet when he had episodes of freezing, an extra Clonazapem when his anxiety spiked.

When we came clean with Top Chef she shamed us in a tough love sort of way. Top Chef is aggressive and brilliant, meets with us for over an hour and pushes past what any other neurologist has ever done for dad. She’s also a little scary. My mother and I stopped our sous chef shenanigans.

Apathy is one of many non-motor symptoms of Parkinson’s disease. It is physiological (not psychological) and may originate in the basal ganglia of the brain, as dopamine decreases.  20%-40% of PD patients suffer from apathy. If there is cognitive dysfunction, the number is closer to 60%. The caregivers that I know report that each of their loved ones suffers from it, so I think these percentages are low. 

The dictionary definitions of apathy don’t really capture what dad experiences. Merriam Webster defines it as a “lack of feeling or emotion”.

Dad does not lack emotion. His feelings appear muted because it is so much harder for him to physically express them. What he lacks is motivation.

The Parkinson’s Disease Foundation (http://www.pdf.org/apathy) has a much better definition:

“A person with apathy:
May feel that it takes extreme effort to get off the couch or out of bed to participate in daily activities.

Requires constant prompting to do anything.

Does not want to go anywhere.

Feels they “can’t be bothered.”

If left alone, without a goal, support or encouragement, may just sit on the couch or watch television.

Is not motivated to do things.”

Check

Check

Check

Check 

Check

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Dad experiences each and every one of these, every single day, every minute, every second.

To learn more, I decided to go right to the man who has to fight this monster.

“Dad,” I said, “do you remember when Top Chef talked about apathy?”

“Yes,” he said, reclined in his cushy brown lift chair. He reaches for the chair’s remote and in an effort to rise up to my level, he pushes the down arrow instead. Slowly coming to terms with his error, he switches his thumb to the up button and rises to a seated position.
“Can you describe how it manifests in your life?”

“It puts me down for more than just the immediate time frame. It comes and goes.”
“Can you tell the difference between apathy and depression?”

“Yes, apathy passes through my system very quickly and depression stays for a long time.”
“How has it impacted you the most?”

“It’s like my brain is not transmitting strong signals when something changes. A lack of energy.” 
He paused.
“It takes you out of the playground. You don’t want to be, or have the facility to be, a part of the conversation. I just sit there in a group and don’t say anything. Because of the lack of energy, I can’t keep up with the conversation or the group dynamics.”
“What about effects on motivation?” I asked.

“It slows you down. It plays a part in not wanting to take walks, exercise, go to activities.”
“How does it impact people around you?”

“It puts a barrier up, it short circuits understanding on everyone’s part.”
“If it were a color,” I asked, “what color would it be?”
“Yellow.”
“A shape?”
“A ball.”
Yes, it is like a yellow ball, bouncing around inside his brain. Sometimes it’s small and hard like a marble, other times it is large and soft like a beach ball. Either way, it’s unpredictable, powerful and contagious. It not only knocks out dad’s will and desire, it knocks out ours as well. This yellow ball bounces into motivation, will and desire with crushing force.We all try to deflect it, push against it; but it is a Sisyphean effort. 

“Dad, I found an Apathy Inventory test. Want to take it?”
“No.”
“It’s short, just a few questions.”
“No.”

“It will only take a minute.”
“No.”

“I’ll help you, answer some of the questions for you.”
“No.”

“Why?”
“I’m too full of apathy.” 

And in that brief moment of shared laughter that follows, we beat back apathy.

As the mime peels off one expression and wipes on another,
so Parkinson’s swipes and skims my father’s face.
Sweeping expression.

The mask advances like a glacier, almost imperceptibly, over years, decades.
flattening his forehead,
leveling his brows,
trampling and freezing
his cheeks,
mouth,
chin.
A frigid veil unfurling.

Absent the lively encasement of raised brows and creased lids,
his eyes resemble orbs of dark ice.
Emotion buried underneath.

Once a mirror of my own expressions,
now, muscles seized,
rigid plateau,
his face often
reflects nothing,
returns nothing.

Dad,
I want to push up the corners of your eyes and return the glint of the sprightly jokester.
I want to pull up the corners of your mouth and return the guffawing grin.
I want to see you look angry.

The mime sweeps his hand over his face, replaces tragedy with joy.
My father’s mask remains.

Is it odd that one of the caregiving tasks I like most is helping my father bathe? Growing up, privacy was sacred. I was taught to knock before entering a bedroom or a bathroom. I was gently admonished if caught rummaging through my parent’s dresser drawers for a lost sock or loose change without permission. Unless under the age of four, no one ran around our house naked. My crop tops and butt cheek baring cut offs of the late 1970’s, were allowed but frowned upon. Decorum didn’t exactly reign in our home, but it held its own. 

On occasion, my mother would get dressed or undressed while I was in her room, but one of us would always turn away before the most meaningful parts were revealed. 

I remember vividly the locker room at the Davenport, Iowa, YMCA. On weekends I steadily swam my way from Guppy, to Minnow, to Fish, paddling ever faster towards Flying Fish.  By some accident of timing, I always came out of the pool at the same time as an older woman whose locker was next to mine.  She was very large, with heavy hips, and seemed not to notice the wide eyed ten year old next to her as she peeled off her black one piece bathing suit and hung it on the locker door. She calmly dried the pool water from her legs and ankles, bending and turning as needed. I do not remember what she looked like from the neck up, because my gaze never made it that far. I was transfixed, Saturday after Saturday, in that YMCA locker room, by her gourd-like breasts, hanging down to her belly button and swaying from side to side like twin upside down metronomes, regulating the tempo of my blinking eyelids. 

My father had strict personal and privacy protocols.  His watch, tie clips, hair combs, and handkerchiefs each had a place of their own, and were not to be moved or borrowed. He was the first man to get pissed off at me for using his razor to shave my legs. Even today, if I look longingly at my husband’s razor in the shower, I hear Dad’s voice in my head – an unmistakable warning.

Dad’s suits were made by a local (and infamous) tailor, Willie Eckstein. He took me to fittings some times. As Willie moved the tape measure around my dad’s shoulders and down his long arms, I inhaled the air of respect, of power. At the end, Willie always gave me a dollar, a memorable token, and we were on our way.

“I was voted the ‘best dressed boy’ in high school,”  Dad recalled to me recently, calling out the irony, as he looked down at the folds in his shirt where the crumbs and detritus of breakfast had settled.

I really thought I would get through life without ever seeing my father’s penis.  Now I see it, and it’s accompaniments, every day as I help him up and down from the toilet, to dress and to shower.

I took over the task of Dad’s bathing when he lived in our home last Fall. I took over from his aide, who had taken over from my mother, as the physical demands became too much. 

It is a ritualized process that, after helping him undress, and taking off my shoes and socks, involves helping him maneuver his walker close enough to the grab bars, so that he can hold onto them while I take the walker out. I try to help him maintain his independence as much as possible, so he usually stands for the first five to ten minutes and with one hand grasped around a bar, uses the other to spray his lower body. Some days, I can pour liquid soap into his open hand and he can clean his  “nooks and crannies”, as I refer to those formerly private areas, on his own. On other days, his arms weak and frozen by Parkinson’s Disease, he cannot reach and I do it for him.  

My father’s mannered protocols and boundaries about his own skin, slipped away as his disease progressed.  I wonder if I would be so gracious and accepting of this type of help?  Would I not put up a fight, would I not be embarrassed, not wanting anyone to suds over my varicose veins, my cellulite, my unshaven legs? His vanity dissipated along with the Dopamine.

When did the most private areas of this man’s body become muted, as bereft of any special significance, of weighted meaning, as an elbow, or an earlobe, or the back of a knee? It’s as if my perception of my father’s physicality has blended into a picture more holistic, where there are no “parts” anymore.

Dad sits on the shower stool to clean his upper body. He holds the shower wand over his head and closes his eyes.  He is still. The water runs in myriad rivulets down his nose and cheeks, over his ears and down the nape of his neck. I watch as he enjoys a brief moment of peace, of relief, under his gentle waterfall.

Later, my mother passes me in the hallway, shirtless, braless, wearing only a pair of panties.

 “Please, mom, cover up.” I beg.  “I can only handle one naked parent at a time.”