My dad has Parkinson’s disease

“Katherine Marie, it’s 10:30.”

The low, raspy voice cut through the noise surrounding me. I looked up. From across the dining room, I could see my dad peering in at me through the doorway. He was on the stairs in the hallway, midstride, hand on the railing, looking exhausted.

Exhausted? More like beaten. Downtrodden. Like there was no place to go but up. I still remembered sunny days when he used to tend his rose garden, clean the gutters, chaperone his mother to dinner at our house. He liked to pick up donuts on his way home from Mass on Sundays, and he loved to whistle and sing and tell jokes. He had once been plump enough that my little-kid arms couldn’t reach around him. The weight had melted off about the same time his shoulders began to stoop. The little ditties and limericks had also faded into the background. The last time I asked him to sing “Hennessey Tennessee toodles the flute,” he looked troubled. “I can’t,” he said.

I had missed the family meeting a few years earlier when he explained why he no longer went to work. I was ten years old and at basketball practice that night. When I got home, my older sisters told me he had called them all together around the dining table to talk.

“What do you mean? You had a family meeting without me?”

“It wasn’t a big deal,” said one as we huddled in the hallway. 

“He just said he quit his job.”

“I thought they fired him,” said another.

The first one shrugged. “Either way, he’s not going back.” And off they went.

I stood there alone in the hallway, bewildered, still holding my basketball gear. At the time, I was hurt that he hadn’t waited for me. Practice ended at eight. Was that really so late that he had to go ahead without me? When I asked about it later, I was told the older girls had to leave before I got home, and dad wanted to have the meeting when he could get the most kids together at once. So why not keep me home from practice? It stung to think I was extraneous. In hindsight, I wonder if he wasn’t grateful that his youngest of eight wouldn’t be there to hear her dad’s Parkinson’s disease had made his position as a corporate lawyer untenable.

It didn’t take long for the running of the house to falter. Someone stole the lawnmower out of our backyard, and with no one in charge to buy a new one, the lawn grew unchecked until a neighbor kid finally mowed it. 

My dad has Parkinson’s disease, so he could no longer serve as an usher at church, and with him ineffectual at rousing us to go to Mass without him, we slept in. He didn’t sleep well at night himself, so daytime often found him lying in bed or sleeping in a straight-back chair in the living room. When the muscle aches and exhaustion overwhelmed him, he stopped coming down to supper. 

To our credit, though, we kids still served dinner at six o’clock each night.My dad has Parkinson’s disease, betrayed by his body, he didn’t have a wife to lean on, so he leaned on us. When I was fourteen, he called up the stairs to ask me to stay home from school to help him. He needed someone to make his lunch, give him his meds, help him to the toilet. Panic shot through me. Why did he have to pick me? I looked around uselessly. Everyone else was gone. I leaned over the railing and called down to him.

“I can’t, Dad. I have a test.”

The truth saved me. I didn’t like leaving him on his own, but I also thought he was wrong to ask me to stay home.

Another morning, as I was getting ready to leave for school, he had an attack. Although often he became what he called Cardboard Man, stiff and unable to move from his bed, other days he couldn’t keep his legs from jumping like a live wire. Panic attacks caused him to think he was dying, and frequently he would call an ambulance for medical help, or else the family priest for last rites. This time he was dizzy. Before my eyes, my once unshakeable father dropped to the linoleum floor in the kitchen. On hands and knees, he crawled to the dining room to sit on the soft carpet. He needed my help.

“Call the doctor,” he said weakly.

Again I panicked. “I don’t know his phone number. What do I do?”

He had no answer.

“I’m sorry, Dad. I have to go. I’m late for school.”

And I walked out. I practically had to step over him to get to the door. I have no idea how he recovered his equilibrium or how long he sat on that floor after I left. I returned after school and as I recall, nothing more was said about it.

Life continued, with dad’s Parkinson’s disease becoming ever more intrusive. The tremor increased. His feet began to shuffle when he walked, and his countenance drooped like a mask too large for his face. It became harder for his children to understand his garbled speech, impossible for strangers. When he spoke to anyone outside the family, they would flash a pleading glance at one of us kids. No one wanted to offend him but neither could they guess what he might be trying to say.

Eventually, he became a captive in his own home. Vertigo made descending the stairs too harrowing, especially when he would be exhausted after twenty minutes and would have to climb back up. That’s when the second floor became his domain. Someone located an antique handbell for his bedside so he could call us when he needed help. When the tinkle of the bell sounded, his kids would look at each other and ask, “Who’s on Dad duty?” When it was my turn, I dreaded ascending the stairs.

On particularly bad days, when I heard that bell nagging me as soon as I walked in the door from school, I would flip off the empty stairs. What might it be this time? A leg massage? A bathroom break? Another freakin’ vegetable plate? He had all but stopped saying please and thank you. Maybe it was his way of maintaining some control, some authority while lying prone, sweating, and in pain. What indignity having your teenage daughters empty your bedside urinal.

My dad took pills twenty times a day. He required medicine to counteract the side effects of the drugs that were intended to control Parkinson’s. A side effect of one of the pills was hallucinations, and that meant periodic stays in the psych ward while dosages were adjusted. 

During one of his stays, I awoke in the night. Bang, bang, bang, bang! I crept downstairs, discreetly pulled aside the sheer curtain, and peered out the long, narrow window next to the front door. A man in a police officer’s uniform was standing on the porch. I drew back. I recalled the stories of criminals dressing up as police and robbing people. Through the door I heard, “Katherine Marie, it’s your father. Open the door.” I let out my breath and followed orders. After all, my dad has Parkinson's disease, how else would I respond?

He had walked out of the psych ward. The hospital knew he had left but couldn’t stop him since he was there voluntarily. A cop, tipped off by the hospital, found him walking a busy street and brought him home. Apparently, I was the only one to hear the knocking. The rest of the house got up with the commotion, and my dad was escorted back to the hospital in the morning.

Two years later I escaped to Chicago for college, privileged to have siblings who could care for my father in my absence. I graduated and got a job and made Chicago my home. 

On a trip back to visit my family, I went to see my dad in the long-term care facility. I learned when I arrived that he had been throwing up—throwing up bile, they said—and the medics took him to the hospital. He stayed for more than a month. I lingered in town as long as I could but eventually returned to Chicago and my job. While I was gone, my father’s health further declined. Anguished and in pain, he groaned to my sister, “The devil got me and won’t let me go.” He had another seven months before he would be released from his pain.

But that all came afterward. On this night, I was thirteen. I was just settling down to the dining table where many of my siblings were already well into their schoolwork. The atmosphere was festive with four high schoolers telling jokes, records playing on the stereo, textbooks, and notebooks scattered about. My backpack was perched on the table and my hands were reaching in to pull out my social studies folder. I was laughing at someone’s absurd comment when the sound of his voice reached me.

“Katherine Marie,” he called, “it’s 10:30. It’s time for bed.”

The smile disappeared from my face. “But I haven’t started my homework yet.”

His stooped shoulders slumped even further. I could see I had let him down. I could also see he knew he had let me down too. He was on his way to bed when he just noticed his youngest was up past her bedtime on a school night. And now how late would she be up?

Perhaps we both understood what that signified, how things had changed, and where they were headed. In three short years, he would move to a nursing home, the house would be sold, and his kids would begin life on their own. In another seven years, his heart would stop. Over that decade he would suffer many indignities, feel forsaken by God, and plead for his release.

Our relationship tracked his illness, first slowly, then precipitously degenerating over several years. When he moved to the nursing home, we recovered some ground. I was able to release my resentment and we built a rapport. But then the physical distance took its toll, and guilt nestled into resentment’s place. When he died, I felt untethered. Who was I if not his daughter? My unmooring mixed with the guilt that had taken hold, and it took many years for me to shake both.

Today I have regained my sense of stability. Distance has given me a freedom I never would have expected. As the thirty-nine-year-old mother of two young girls, I view the world through a parent’s eyes. Even though my dad had Parkinson’s disease I see now, he did his best and so did I.