20 September 2011

Death be not proud

My beloved grandpa, my mother’s father, my Pa, began to show the signs of Parkinson’s Disease when I was in high school. It all started with some tremors in his hand, his limbs betraying the commands he wanted them to perform. Our family fervently searched all the popular science literature for reasons why it happened to him – was it from something he was exposed to during his years in factory jobs? Could it have been from welding? What about when he was a high school shop teacher, something then? And how come no one in our family has ever had Parkinson’s Disease? Wasn’t it genetic?

There aren’t any straightforward answers to those questions. These things just happen. And sometimes they happen to good people like Pa.

A few years ago Pa began to have appointments with a specialist here at my institution. I loved getting the chance to see him – being near him was a major factor in why I chose this institution for graduate school. But getting him to Nashville, which was three hours from his house, required a coordinated effort between my mother and her brother for every appointment. As you might expect from siblings that had already lost their mother at a young age, they would get snippy with each other over the stress of jointly caring for their father. The entire ordeal was usually quite tense.

At what would be Pa’s last visit with the specialist, Mom and her brother had already had a few fights while getting Pa to the appointment. After the seeing the doctor, the four of us had a stressful lunch – fast food takeout in the park, because at this point, Pa’s uncoordination made eating in public extremely embarrassing for him. My mom had planned ahead by bringing a plastic tablecloth so he didn't have to eat off the filthy picnic table. I spent most of lunch swatting flies away from Pa as he delicately, carefully, slowly, silently ate his sandwich and fries. My mom and uncle bickered some more as they got lost trying to drive out of the park, and the bickering caused my mother to run a red light at a busy intersection, which caused even more bickering about how she put us all in danger. Pa didn’t say a word, but we assumed he was as miserable as the rest of us and just couldn’t make his mouth function correctly to express that opinion.

On the way home from that stressful doctor’s appointment, my mom looked over at my grandpa to see if he was finally resting. He noticed her glance and faintly said the only thing he would say that afternoon: “Thank you for the picnic.”

Only a year later, that same uncle, my mom’s brother, died within a month of getting a cancer diagnosis. Like when my grandpa was diagnosed with Parkinson’s, our family spent the month conducting frantic internet searches for how to cure stage four liver cancer and whether my mom could give him some of her liver and how many rounds of chemo would it take. This time we didn’t wonder why my uncle had cancer or whether it was genetic – this was remarkably similar to how his mother died. A diagnosis, a brief struggle, and then... gone.

The only blessing in that situation, for both my maternal grandmother and my uncle, was how quickly it happened. Although my family has faced death so very often, we each are forced to come to terms with death quickly. Very few people in my family live far past the age of seventy, to the point where the body slowly starts to shut down. For all my family members, including my father, the pattern is: one day someone is here and seems healthy, the next day they are sick, and the next day they die. We can deal with the shock of losing a family member suddenly, but we don’t know how to contemplate death while someone is still alive. There is no precedent for a long goodbye in my family.

Death is cruel, but it is crueler to face it, steadily approaching, for eleven years.

My grandpa’s long goodbye was most horrifying for that reason. He was always a quiet man, but he grew completely silent over the years, perhaps wanting to contribute to a conversation but knowing his muscles wouldn’t obey his commands to articulate words. His medicine to prevent tremors sometimes caused hallucinations, so he began to live in a world where he had to question what was real and what was not. He began to suffer indignity after indignity as his body began to fail him – his limbs, his mouth, and then his kidneys. He had to be moved to a nursing home because he needed round-the-clock care in a facility with more medical equipment than they had in their home. But what saddened me most was that he was fully aware of what was happening to him.

A little over a week ago, I went to my hometown for my high school reunion. While there, I went to visit my grandpa in the nursing home, to which he had only recently been moved. When we arrived, he was sleeping. My mother and I didn’t want to try too hard to wake him up., so I just whispered in his ear to tell him that I was there and that I loved him. We then left to go to my grandma’s house to visit her. While we were there, we got the call from the nursing home. Come now. It’s time.

Our family gathered to say our goodbyes. The entire time, Pa stared wide-eyed at the ceiling. Was I imagining that his expression held mostly fear? I wondered what he was thinking about. I wondered if he still knew he was dying. I wondered if I could just keep whispering in his ear that if he wanted to let go, it was okay. I wondered if he wanted to just stop breathing. But mostly, I wondered if he was afraid to find out what would happen if he didn’t.

Pa didn’t pass away that day. He rallied and lingered for days, eating and drinking almost nothing. My mom, in a wheelchair with her broken ankle, stayed there with him night and day. During that time, he had moments of apparent lucidity – raising his hand to greet a nurse who said his name, responding to comments my mom made. And again, that was most terrifying to me. I wanted his brain to shut down, to give up, to allow him some peace.

I went back to Nashville in the meantime, but on Thursday afternoon I got the call again from my mom: Come now. It's time. For real.

I dropped everything in lab and made the three-hour drive with plenty of time to spare, as did all my cousins. The nursing home began to start hospice-like care, bringing us a cart with fruit and cheese and crackers and coffee for our family to wait. Pa was given morphine, which made him look so much more peaceful than the frightened wide-eyed stare he had the week earlier. Still, he only slowed, not stopped. He wasn’t blinking his half-closed eyes, wasn’t able to swallow any liquid, wasn’t responding to noise. But his heart continued to beat. His chest continued to rise and fall. About six hours after I arrived, my mom asked the small group of family members still assembled in the dark, quiet room, “Have any of you done this before?” We all shook our heads. We were all used to the sudden deaths so characteristic of our family. Escorting someone to death was as new to us as the adventure that Pa was poised to take.

Our relatives eventually went home with my grandma (my mom’s stepmom of over forty years), who was too sick with worry and watching Pa die to stay. My mom and I remained with Pa, kept the vigil. I don’t know that he knew we were there, but it was important to stay just for the slight chance that he did. It was just the three of us. Mom rested her head next to him on his bed, with her hand on his chest to feel him breathe. I saw his half-closed eyelids flutter occasionally, I squeezed his hand whenever it twitched, I watched his chest rise and fall, all night long.

And then, right as dawn approached, his long, slow ride downhill finally came to a stop.

A few years ago, I started to write Pa a letter to tell him how much I adore him. I never read it to him because I wouldn’t be able to without choking up. You see, my grandpa was in many ways my father figure while I was growing up. My dad and I had a complicated relationship, but there were no complications with Pa. He was the man I trusted and admired more than any other. And I was one of many who felt that way.

I wish you could have known him. He was the sort of man who kissed his wife before taking out the garbage, the sort of man I knew I should find to marry. When Pa answered the phone in his deep voice with a gruff “hello”, and I said it was me, his voice would immediately soften to say, “Hi, hon.” He taught my mother how to use power tools and the confidence to build things for herself, which she passed on to me. He knew that when it came to discipline, it was much less effective to yell or spank than to quietly say, “I’m so disappointed in you.” He was the epitome of the strong, silent type. He was the ideal patriarch for our blended family. He treated everyone he knew with dignity and respect. He was worthy of adoration.

In the letter, I also said this:

“Even though we’ve had so long to think about it, I still don’t really know what I will do without you. But because I have seen in you how to be strong and gentle, how to love and persevere, I am sure that I can do just that. I will simply continue to live the lessons I have learned from you.”

In other words, I will always strive to be grateful for the picnic.


Christal said...

A perfectly-written story. So beautiful, sad, a bit of happy.