On Parkinson's Disease

by Dave Gregory

This is one of those self-indulgent posts, one of those things that’s more therapeutic for me than for anyone reading. Please know that this isn’t an invitation to a pity party; hopefully I’ll come to some worthwhile conclusions by the end of this.

Over the course of the next eight months, Dave Gregory, Jr. (me), will be going through a bunch of life changes that should really be undertaken over the course of several years: getting married, moving into a first house, maybe starting grad school again (that is, if the local public university’s education program would be willing to tolerate somebody working on a dissertation in theological curricula), sponsoring his wife-to-be as she converts to Catholicism, and having his parents follow him across the country from their home in Queens that’s been passed down through five generations of family.

As with the vast majority of things in life, it’s a weird mixture of mourning and celebration, of moments radiating consolation along with deep troughs of darkness. Part of me wonders if I should be seeing a therapist for all the stuff that’s going on right now.

Fifteen years ago, my father, David, was diagnosed with Parkinson’s disease, a reality which he kept secret from the school at which he taught labor and employment law for three decades. Three years ago, his university put on a dinner to celebrate his many years of service to the school. As the Dorothy Day Professor of Labor and Employment law, my dad had founded a center for the study of such, run countless conferences on the intersection of Catholic Social Teaching and the law, and had most notably raised hundreds and hundreds of thousands of dollars for student scholarships. At the event, friends and former students roasted him (which included donning shaggy grey wigs and his characteristic Hawaiian shirts), and by the end of the evening, he remained glued to his seat. Parkinson’s has the tendency to cause “freezing,” so they brought the microphone to him for some closing thoughts.

“I hope I’ve taught my students how to live,” he remarked, “but a number of years ago I was diagnosed with Parkinson’s, and now I hope to be able to teach my students how to die.”

Parkinson’s Just Sucks

Three months ago, David walked into a hospital with some fluid in his lungs, only to contract two urinary tract infections in rapid succession and totally lose all mobility. Beyond debilitating a person’s capacity to get around, Parkinson’s also impairs the ability to speak, and a substantial minority of patients also get a weird form of dementia. Rather than destroy the memory, Parkinson’s dementia brings on perpetual hallucinations and delusions. While my dad had been seeing cats and dogs for some time, and would occasionally attempt to escape a restaurant because he thought terrorists were in the building, the urinary infections and his hospitalization intensified these psychotic episodes, making them almost constant. I flew back to New York a couple of times, only to find that the man I once knew could no longer walk, communicate, or maintain a connection with reality. A feeding tube had been inserted in his stomach, in order to avoid the aspiration of unwanted matter into his lungs, and thus one of David’s chief joys -- eating -- has been stripped from him.

Two weeks ago, David arrived at a Portland nursing home by air ambulance; my mom climbed out of an ambulance’s passenger seat on the rainy evening of December 18th, and medics rolled him out of the back. Wide-eyed and fearful, David surveyed his new surroundings, and once he gained an awareness of his whereabouts, he was happy to see me. He fell asleep as my mom and I took inventory of his belongings. In sum, all this means that the rhythm of my life now changes: almost every day, I’ll be spending a couple of hours at the nursing home after school, and much of my weekends as well.

The Temptation to Despair

The temptation to despair lurks in the midst of all this. My mother, Garris, a living saint -- to use a contradiction in terms -- has spent every day of the past several months with her husband. Spending time with David can be immensely frustrating; given that he’s generally almost impossible to understand, you’ve got to close the door and mute the television before leaning down next to his face to hear his words. Your nose meets the putrid smell of a mouth that’s difficult to clean (given the risk of aspiration, the staff avoids putting liquids in his mouth unnecessarily), and the words he struggles to get out often make no sense. His most persistent delusion is that he’s on a boat. I mean, the dude used to love boat and ferry rides, so I hope this is a welcome delusion. Nonetheless, all in all, it’s not fun. Here’s an example of one conversation, which is rather typical:

David: I won the Academy Award two years ago for best acting.
Garris: You mean from the American Academy of Arbitrators?
David: No.
Me: Like the Academy Awards for movies?
David: Yes.

In the midst of seeming madness, there are moments of lucidity, for which we must remain grateful. A few days after settling into the nursing home, my dad awoke from a slumber and asked me, “Did I flip?” In a rare moment, his face seemed at peace; his facial muscles did not distort, his jaw did not tremor, his tongue did not loll out, and he looked at me calmly. “Yeah,” I responded, and proceeded to tell him that he was in Portland, so that I could visit him every day.

It’s not that David forgets anything or fails to recognize the people around him, it’s just that he often believes things that simply aren’t part of reality. Last Wednesday, in one such brief period of clarity, when the disease loosened its grip on his body and mind, the following conversation went down:

David: So this is it?
Garris: Is what it?
David: Is this how my life ends? I have to eat this terrible food? What if I want a turkey sandwich or a good steak?

And he began breaking down. His face resumed distortion, though not thanks to the disease. Sadness filled his face, and he wept.

The Practice of Dying Well

In my freshman philosophy class, my professor wisely remarked that philosophy is the practice of dying well. That’s why I became a philosophy major, I think. I want to die well. My friend Eric offered the insight -- quite truly -- that having my dad out in Portland will provide me closure as he approaches the end. And while this is completely accurate for me, I’m not so sure it’s true of my dad. All the friendships and acquaintances we make fade into the distance as life draws to a close. The significance of our worldly accomplishments mean little when eclipsed by adult diapers, sponge baths, Hoyer lifts, and tube feedings. These miniaturized crosses cast a grim shadow over all that anteceded them. This is the nature of things. The years wax and wane, and the relationships we’ve forged wane more so than they wax. Loneliness settles in, and we realize that we die as we are born: largely alone.

In the aforementioned conversation, my dad tearfully acknowledged that Ingrid, my parents’ housekeeper of almost two decades with whom they’ve become quite close, had visited him more than anyone else in New York. He wasn’t placing fault or blame, I don’t think, but rather coming to grips with the situation.

David has repeated on several occasions that he wants to die. I don’t know if he has months or years to live (at least, I don’t think he’s on the brink of death), though I do know that our souls and our bodies are intimately connected. In some mysterious way, our bodies respond to our minds. Maybe this desire for death will speed the shutdown of his body.

I just hope that I am enough.

I hope that I can help him die well.

I hope he still has things to teach me.