Growing up, my father was the calm, organized center of our family. My mother had health problems and a demanding job, so working and caring for herself and spending time with us was all she could manage. Cooking, cleaning, bill paying, and administrative tasks fell to my father, who handled them with such ease and timeliness that even as an adult I sometimes don’t understand why my new car registration sticker doesn’t just show up on my windshield one day, or why it has to be my job to know what time my flight is.
When it came to traveling, my father was a machine. He booked our flights and hotels and car and loosely planned our sightseeing activities in advance. On travel mornings, he would wake my sister, mother and me up at the appropriate times, load the car, drive us all to the airport, check us in, find our gate, and handle our boarding passes all by himself. My mother and sister were grumpy and sluggish in the mornings, so they would trail behind my father and me as we walked through the airport to our gate. I always took it as a point of pride to walk up ahead with my father. The two of us were awake, we were organized, we were ready. No bleary-eyed stumbles down the concourse for us.
My father has Parkinson’s disease. I never thought of his Parkinson’s symptoms as being all that severe, but they’ve worsened over the past few years. He stumbles when he walks, he drops things, he can’t drive a car that isn’t his because his feet can’t tell the gas from the brake, he is taking naps for the first time in his life. These symptoms would be manageable, but there is also the forgetfulness, the lost sense of direction. Sometimes he forgets what he’s saying in the middle of a sentence, or can’t remember a specific word he wants to use. My aunt told me that once, when they were gardening at her house, he briefly forgot where he was.
He’s had Parkinson’s for 10 years, and 10 years is the point at which a Parkinson’s sufferer can have a deep brain stimulator implanted in their skull to relieve their symptoms. As far as my understanding goes, Parkinson’s is hard to diagnose, and the deep brain stimulator is a very bad idea if it turns out the person has been misdiagnosed, so neurosurgeons like to be sure they’re dealing with Parkinson’s before they go through with the DBS implant.
The DBS apparatus consists of a power supply, the nodes that do the actual stimulation, and a few cords that connect the nodes to the power supply. The power supply is about the size of a tobacco can and is implanted in the chest like a pacemaker, the nodes are implanted in the brain, and the cords are run from the nodes to the power supply through the neck. These parts are implanted in a series of three surgeries, and after healing time, a neurologist calibrates the unit and it’s supposed to relieve symptoms.
My family has known this was coming for awhile. My dad made jokes about it, mostly “I need it like I need a hole in the head.” For a long time I saw it as a sort of abstract concept that may or may not be necessary, but as his symptoms worsened, I began to look forward to it, and I think my dad did too. His neurosurgeon scheduled it, and it happened in July of this year.
My parents live in St. Louis and my sister and I live in Austin, so we heard about the first two surgeries over the phone. The first one went fine, he recovered nicely, and the second one went fine until he woke up confused and disoriented. The neurosurgeon said that this was normal, that he’d just had brain surgery after all, and that things would get better quickly. My father stayed in the hospital for a few days and then he and my mother went home.
They shouldn’t have gone home. Dad wasn’t any less clumsy than he was before the surgery, but now he’d had brain surgery, so if he fell and hit his head at home it’d be a very bad thing indeed. And he did fall, but thankfully he landed on his knees and elbows and not his head. Worse, though, he remained confused and disoriented to the point where one evening he became convinced that he wasn’t in his own house. He’s quite a bit taller and stronger than my mother, so my aunt and a visiting cousin had to come over and prevent him from walking out the front door into the night.
I got a text from my aunt: “One of you should come to St. Louis.” My sister needed to stay home with her six-month-old baby, so I caught a flight to St. Louis and arrived on the day of my dad’s third surgery.
My aunt picks me up from the airport and drives me straight to the hospital, where I take the elevator up to the neurology floor and find my father’s room. He is tired and out of it, but happy to see me.
In all the confusion, my aunt and mother have forgotten to warn me about the surgery scars. My father has a huge scar across the top of his head and another one down the side. The one down the side is new; it’s held shut with large staples. They’ve shaved his white hair around the scars, leaving a lone wispy tuft at the top of his forehead, which makes him look strange. I’ve never seen a brain surgery scar before, and seeing one on my father as he lay in a hospital bed is almost more than I can take.
More than I can take will come later. My mother has been taking care of my dad around the clock for the past week, and she needs a break. I offer to spend the night in the hospital room with my dad so she can go home and get some rest.
My dad grew up on a farm in northwest Ohio. Gender roles being what they were in the fifties and sixties, his two older sisters helped my grandmother with housework, and he helped Grandpa with farm chores. They would get up very early each morning to milk the cows and do other things I don’t know about because my father can no longer type and has stopped writing his memoir. It sits in text files on his computer, which he took apart the other day while my mother was asleep because he thought something was wrong with it, and now he can’t put it back together.
My father is the one who taught me how to build and use computers.
Farm living was hard work, and eventually my father’s family sold the farm and moved into a nearby town, where my grandfather worked for the city water department. The farm work ethic followed my dad into adulthood, and I have never seen him wake up later than 6 a.m.
My mother gathers her things and goes home. My aunt and cousin arrive and the three of us talk for awhile. My dad doesn’t say much until my aunt is telling a story about the time she and my father were children and they were both in the hospital having their tonsils taken out. She’s saying that my grandparents were really worried about the tonsil surgery, because another child they knew had died during a tonsillectomy. “We were friends with the family,” my aunt says, “but I can’t remember their name.”
“Stevens,” my dad mutters from his hospital bed. “It was John Stevens.”
My aunt and cousin and I exchange surprised glances. “I can’t believe you remember that!” my aunt says. “You couldn’t have been older than 5.”
I don’t want my aunt and cousin to leave, but of course they have to, and then it’s just me and my dad. The other hospital bed in the room is empty, and I settle in with my e-reader, anticipating that my dad will go to sleep soon.
He doesn’t. They’ve given him all his pills and a sedative and some water and helped him go to the bathroom and tucked him in, but he doesn’t go to sleep. Or maybe he does sleep a little, but after 20 minutes or so I hear him sitting up in his bed. I get up and go over to him and he says, “Well, let’s go if you want to leave.”
“Dad, we’re not leaving,” I say, and he glares at me from underneath his imposing eyebrows and sighs. The nurse and an orderly come in and put an alarm on his bed, which will sound whenever he gets up so that they’ll know to come in and help him, and maybe he’ll realize he’s not supposed to get up.
The alarm does its thing, but it doesn’t deter him. He sits up anyway, or tries to stand, and says things like:
“It’s time to milk the cows.”
or “Let’s go if you’re ready.”
or “What time do you want me to get you up in the morning?”
This last one kills me, because when I was a kid he would say it to me every time we had to go somewhere early the next morning. “What time are we leaving?” I’d reply, and he’d tell me, and I’d tell him how long I’d need to get ready to go. The next morning, without fail, he’d knock on the door to my room at the exact time I requested. I’d hear his footsteps recede down the hallway, and then I’d hear him knock on my sister’s door.
Each time he sits up I put my hand on his shoulder so he doesn’t stand. He’s classified as a “fall risk,” and he’s not supposed to stand up and move around the room without an orderly or nurse present. “Dad, we’re in the hospital, and it’s not time to leave. I’m sorry.”
He glares at me again. “Why is everyone so sorry all of a sudden?”
The bed alarm is going off and an orderly and nurse come in. The orderly helps my father to the bathroom, and I ask the nurse if she’d mind watching him so I can have a break. She says okay, so I take the elevator downstairs and go outside, where I sit on a bench and sob.
My mother’s health problems throughout my childhood mean that I am used to taking care of her. In college I spent a night on a cot next to her hospital bed (though it pains me to admit that she asked me to do this in exchange for buying me a new pair of jeans, and I accepted), and I have brought her things she needed and helped her get up and move around as she recovered from multiple surgeries.
I have no such history with my father. He spent my entire childhood in near-perfect health, caring for my mother and sister and me tirelessly and without complaint. That I now have to help coax him back into a hospital bed he doesn’t think he belongs in is unbelievable to me.
My dad’s parents were very adamant about education; their goal was for their three children to have an easier financial adulthood than they did. After he finished college, my dad completed both a master’s and doctorate in chemistry in the span of five years. He and my mother married and moved to the Houston suburbs, where my dad worked for the same oil and gas company for thirty years, his entire adult career. My sister and I never wanted for anything important–we lived in a big lovely house and had our own car and studied abroad and never had to worry about debt or student loans. To say that my father had an easier financial adulthood than his parents did would be an understatement.
When my father was 55, the oil and gas company he worked for was sold to another company, and he was offered early retirement with full pension. He spent the first part of that retirement testifying as an expert witness against large, scary oil conglomerates similar to the one he’d worked for. At one point he gave my sister’s husband a jar full of mud, and assigned him the task of keeping it sealed until a specific date, on which he was to open it and see if it smelled bad. “It’s for a case!” Dad said. I don’t know what happened to the mud or if it smelled bad or not, but the case was eventually won.
In his spare time he did carpentry and genealogy, read books about science and the history of farming, sang and did sound mixing for a local adult chorus, collected old books and farm equipment, volunteered for Habitat for Humanity and helped cook breakfast at a soup kitchen. At my grandfather’s funeral he gave the eulogy, and when he got to the part about how my grandfather had passed to him his love of learning, I thought, “And how.”
When I go back upstairs to his room, the orderly is suggesting that my still-awake father might like to watch some TV, and I can’t help but laugh. My father’s hatred of television is notorious among our friends and family members; he enjoys PBS documentaries, Rachel Maddow, The Daily Show and TED talks, but as far as he’s concerned the rest of it can all disappear forever.
“He hates TV,” I say to the orderly, “but thank you, and thanks for keeping an eye on him. Dad, do you want me to read to you?” Dad says yes, so I flip through my e-reader to see what I have. On his recommendation I’d downloaded Angle of Repose by his favorite author Wallace Stegner, so we agree that I’ll read that, and I pull a recliner chair up next to his bed and sit down.
The book turns out to be narrated by an older man in a wheelchair who is suffering from a terminal disease, and the first part of the book has the narrator complaining that his children want to put him in a home. I can’t tell if Dad’s following the plot or not, but I skip ahead to the farm part just to be safe, and he doesn’t seem to notice. Eventually he falls asleep, so I stop reading, and then I fall asleep too until the bed alarm wakes me an hour later. He’s trying to get up again, trying to leave, and I say, “Dad, we have to stay here in the hospital. I’m sorry, hon.” I don’t realize how patronizing this sounds, but he does.
“Don’t give me that ‘hon’ crap,” he says.
“Okay,” I whisper. The orderly and I get him back into bed, and I sit back down in the recliner. I can’t remember where we left off in the book, so I just pick a random paragraph and start there. It’s 3 a.m.
We continue like this until 6:30 rolls around and it’s time to wake up anyway. I order us breakfast from the cafeteria, and we eat in silence with the TV in the background tuned to the Weather Channel, the only thing on that I think he could possibly stand. When he’s done eating he grins at me and jokes, “So, are we going to have this neurosurgeon disbarred or what?”
(to be continued)