The Things That Remain – Parkinson’s Disease, my father and me

About eleven years ago my father called me in Nashville to tell me he’d been diagnosed with Parkinson’s Disease.  Later, the diagnosis would be expanded to include Lewy Body Dementia.  He choked up a little when he told me, something I’d rarely heard him do.  I understood that the diagnosis was life-changing, for him and for the family.  But I didn’t know how.  Nor did I realize how continual the changes would be.

My father has been transformed in many ways over the past eleven years.  There are the obvious physical differences—slumped head and shoulders, shuffling gait, drawn face, faded voice.  He no longer can control his bowels, and he often drools.  The disease has changed his personality in some ways as well.  He’s more somber, and periodically agitated.  On several occasions he’s fought off caregivers.  To whatever extent my father is aware of his worsening condition, I’m sure he must fight tremendous frustration and despair, and the only way he can effectively communicate his emotions is to act out.  One of the kinder aspects of his disease, I guess, is that the more it progresses the less aware of his decline he becomes.

We do what we can to preserve what remains of his health, to slow the disease’s progression, but at this point we hold little hope for a cure or a reversal of symptoms.  Our goal now is really to make the transition into the unknown as painless as possible.  We are like flight attendants who have little knowledge of where their clients are going; they simply try to keep their guests comfortable in whatever ways they can for the duration of the trip.

Despite the changes in my father, the deepest grooves in his personality and character are still there—his thoughtfulness, his mischievous grin and dry wit, his politeness to strangers.  He has always been and remains a true gentleman.  He is also still a runner.  In his late thirties my dad took up jogging, began entering road races, and ran seriously throughout his 40’s and 50’s—mostly 10K races, though he once worked up to a marathon.  These days he periodically impresses, and worries, the caregivers by running up and down the long hallway of the assisted living home.  His love of music also remains.  A good vaudeville or swing tune can get his feet tapping.  My mother often says she fell in love with him largely because he was a good dancer, and at times when he’s barely been able to walk, I’ve seen him dance with surprising agility.

But his response to music is less and less pronounced, and I know that sometime soon he will no longer be able to jog the halls.  These are the realities of the disease, which are the realities of aging magnified and accelerated.

My father now lives in the “Reminiscence” wing (i.e. the lock-down wing) of an assisted living community.  An ironic name, since most of the residents there can’t remember anything to reminisce about.  It can be a hard place to visit at first, but now that Dad has made his peace there and we’ve gotten to know the residents and caregivers, it has become a warm and familiar environment.  My mother visits him every day, usually at dinner time so she can help him eat.  She tends to stay on site when visiting him, and now that she’s gotten to know the other residents and the caregivers, she’s a valuable volunteer to the caregiver team, helping clean, feed and entertain them all with hymns and old standards.

I have made friends at the home as well.  Being a forgetful person by nature, I’m relieved to be in a place where I don’t have to worry about forgetting anyone’s name.  I hold hands with an old Spanish woman, Lucia, who has one cloudy blind eye and likes to put her face to my hand or kiss my cheek as she says things in broken Spanish  that I can’t understand.  Kathryn, a former doctor who survives somehow on a diet of cheese and desserts, loves to sing with me when I bring my guitar, which I don’t do much but probably should.  One day she requested “When Irish Eyes Are Smiling” three times, back to back.  Since my repertoire is a little limited these days, I gratefully obliged, and each time her eyes smiled just as the song describes.  Aneita, the head caregiver on duty during the week, has a crush on Dad and calls him “Sparky,” a nickname most of the other caregivers have now adopted as well.  He probably would have found the cutesy name annoying in his pre-dementia years, but he seems to like it now.  Aneita can almost always put a grin on his face, for which I love her.  People like her are gold and should be paid much more than they are.

As long as Dad can still walk and climb in and out of my car, I like to spring him from the joint as often as possible.  He loves smoothies, and the occasional beer.  Taking him out into the world always boosts his alertness and responsiveness; his eyes sharpen and he talks more.  He talks with subtle inflection as if he’s saying something perfectly coherent, which it may be.  But his broken syntax, cognitive pauses, and low volume make it nearly impossible for me to decipher his meaning.  The breakdown of verbal communication has been painful for me.  I want badly to give him feedback, to make him feel that he is connecting with someone.  But he never seems too bothered by it.  Most of our time together is quiet, which is as it’s always been.  On the several father-son trips we took when I was an adolescent, Dad and I would drive or hike or paddle for long periods of time without saying a word.  I think he was taking me on a retreat from the noise and artifice of modern culture.  He taught me how to appreciate silence and the sounds of nature.

He was quiet himself a lot of the time, but he was a wordsmith when he wanted to be.  His most imaginative achievements were the “Edward and Melanie” stories he used to tell my sister and me at bedtime, stories about a family that bore a strong resemblance to our own.  There was often a moral, but there was humor and adventure, too.  Despite our urging, he never wrote any of these stories down.  It used to bother me that he let them slip away, but now I don’t mind.  I love that he composed them more or less spontaneously and then let them go.  I’m sure he thought about committing them to paper, but it never happened.   My mom boasts about the toasts he gave on occasion.  He didn’t labor over them; he’d jot a few notes down on a napkin moments before he stood up.  His toasts were never long—he had a gift for brevity I wish I’d inherited—but they were typically wry, good-natured, and on the mark.

It’s hard to know what shape his thoughts take now, how detailed they are.  How strange to be so cognitively removed from a man who once taught me algebra and table manners and football strategy.  Yet our emotional connection is stronger than ever.  We show our love for each other more freely.  Not long ago while we were hanging out he looked at me clearly and said, “You’re my pal.”  I can’t think of anything I’d rather hear.

My father’s ability to find humor in his struggles is a blessing to him and those of us caring for him.  A while before he entered assisted living, I took Dad with me to a shopping mall and stepped onto the down escalator before he did.  This was before I’d learned that Parkinson’s patients often freeze at thresholds, so I didn’t I fully appreciate how daunting an escalator might seem to him.  As I started going down, I turned to see him standing bewildered at the top.  I motioned for him to step forward onto the escalator, but then I thought he might stumble and so I tried to climb back up to him, casually, so as not to draw too much attention to him or myself. But I wasn’t making much progress, essentially walking in place.  So I had to forget courtesy and start running to get to the top.  After helping him onto the escalator and arriving safely on the lower level, we had a good laugh about the whole situation.

We don’t go to malls anymore, but I still take him to the lake in the neighborhood where I grew up, and where my mother still lives.  As we pass by the house he lived in for over thirty years, I look at Dad to see if he recognizes it.  If he does, he makes no overt sign of acknowledgement.  A little farther on, the road takes a steep dive as it winds around the lake and down to the beach and picnic area.  I remind him of the times that he, my sister, and I ventured out in the early morning onto the virgin snow and trudged to the top of the “lake hill,” towing our Flexi Flyer sled behind us.  We’d lie on the sled in triple-decker fashion, Dad on bottom, me in the middle, and my sister on top, and speed down the hill, the crunching snow and our excited laughter the only sounds in the pre-dawn quiet.  Dad grins as I remind him of these times.

We park by the beach area and I help him out of the car.  His right leg doesn’t want to move and I have to lift it and turn him sideways to get him started on his dismount.  Once out of the car, though, he does very well.  We walk to the edge of the lake and sit in plastic chairs.  A soft breeze ripples the surface of the lake, and we both gaze at the patterns of light and texture that move across the water.  It makes me happy that all these years later, the lake is still here to bring us pleasure, though we will never again swim across it to the O’Gara’s dock the way we used to.  It was a great place to grow up, and it is a great place to come back to.  Every now and then I offer a comment or a memory, and Dad mumbles a response I can’t quite understand.  But mostly we sit silently and let the water and the breeze take us to a place beyond consciousness, a place that always reminds me of a phrase I used to hear every Sunday, “the peace which passes all understanding.”

After a while I suggest we take a walk.  I hold onto his arm as we make our way through the sand and the pine straw back to the road.  Once on the road, I let go of his arm and we walk toward the base of the lake hill, Dad shuffling along the pavement at a decent pace.  I stake out a telephone pole about halfway up the hill and suggest we try to make it that far before turning around.  He agrees.  But when we reach the pole, he shows no signs of flagging, apparently not recalling the goal I’d just set.  So we continue up the hill.  As my own breathing gets shallow and my legs begin to burn a little, I start to worry we’re pushing it too far.  I ask him if he wants to turn around, but he doesn’t respond; he just keeps shuffling on until we reach the top of the hill.

Going back down the hill is almost as difficult, and by the time we get back to the car he can barely keep his feet under him.  But I cheer him on, amazed at what he’s just accomplished.  As we drive back to his place, I feel as proud of him as I did when, as a child, I watched him cross the finish line after having run twenty-six miles.

When I’m with my father, I feel very close to the mystery of life.  I let go of my acquisitiveness, my plans for the future, my intellectual puzzles.  My overriding desire is simply to serve him in whatever way I can—feed him, dress him, walk with him, laugh with him.  Sometimes it’s effortless, other times it’s challenging and distressing.  But I’m still learning from him, or through him.  I know my father was no saint, and I don’t want to over-sentimentalize his character, but he still serves as an example to me, long after my childhood heroes have faded from the pantheon in my mind.  Witnessing my father slip away from this life by degrees has been a strong antidote to the vanity of ego.  As I watch him and support him on his long, tough journey through this illness, I look for signs of the disease’s progress, but mostly I watch his spirit which, for the most part, remains calm, forebearing, and generous.  Without knowing it, he is still shaping who I am, and who I hope to become.