Father's Day: Dad said every problem had a solution. Then he got sick.

2022-06-18 20:01:14 By : Ms. Elva Xia

I see my father at the dining room table, studying the wheels and springs inside an antique clock that once sat on my grandmother’s mantel.

He found the clock while cleaning out a closet and is determined to get it working again. A library book about clocks is open next to him and a set of miniature screwdrivers sits next to the book.

I’m 10 years old, give or take, and this is a familiar scene. Dad is fixing something. He’s solving a problem someone else either couldn’t solve or didn’t think was worth solving.

I ask what he sees inside the clock and he shows me. He explains how all those tiny metal pieces are supposed to move together in a slow-motion dance. When they do, he tells me, the clock will come alive.

The hands will turn every minute, the chime will ring every hour, and a gentle tick-tick-tick will fill a quiet room with the sound of passing time.

I’m amazed by this. But when I look at those same wheels and springs, at the frozen hands and the faded stain on the curved wood exterior, I see them only as they are. Old and broken.

I ask Dad how he’ll fix them, and he motions to the book and the tools. Everything he needs is here, he says.

There’s a way. He just needs to find it.

More than 40 years later, my father is in a chair in his kitchen, feet on the floor, arms pressing down hard on his walker.

He can’t stand up.

It’s late May in 2020 and this is the first time I’ve been this close to him since the start of the COVID-19 pandemic. I’ve been dropping off groceries and prescriptions for him and Mom, but I stay out of the house. We try to be as careful as possible.

In the kitchen now, staring at my dad, I hope the surgical mask covering my nose and mouth conceals my worry. I ask the only question I can think to ask.

Dad shakes his head. “I don’t know.”

Mom called about 10 minutes earlier. Something was wrong, she said. Come quick. My wife, a nurse, jumped in the car with me and we rushed over.

Dad had been slowing down for years. He’d quit golf more than a decade ago and quit bowling soon after that. His bum ankle gave him fits. Climbing stairs was difficult and walking the dog was no picnic, either.

He needed hearing aids all the time now. And even his voice, once strong enough to command a huddle of JV basketball players or a roomful of his seventh-grade math students, was getting weaker. He sounded hoarse all the time.

But until tonight, we didn’t think much about it. He was 81. He was just slowing down.

I kneel in front of him. “Does anything hurt?”                                 

He struggles to answer, to say anything at all. His right arm aches and he can’t use it to firmly grip the walker. His legs are swollen, the way legs get when someone sits too long or just doesn’t move enough. His voice is barely audible.

It’s as if he’s aged 10 years in three months.

I put a hand on his shoulder and tell him it’ll be OK, that we’ll figure this out. We’ll get him healthy again. But I can tell he’s worried. He’s working this problem over in his head and he can’t find an answer.

My wife has a background in neuroscience. She’s seen this kind of thing before.

“George,” she says, “do you think maybe you had a stroke?”

Dad stares up at her. I can tell right away the answer is yes.

I see my father in his childhood home, decades before I was born, walking into the kitchen to find his mother slumped at the table, sobbing.

He’s still in grade school. His mom, who was 16 when he was born, is in her mid-20s. Young and wild, she sometimes seems more like a big sister than a mother. Dad is the oldest child in a family that eventually will grow to include four siblings.

When he asks why she’s crying, his mother tells him she has no money for food.

My father knows they’re poor. He sleeps in the attic of a rented farmhouse with no electricity or running water. But the consequences of being poor never feel more serious than they do in this moment. Being poor doesn’t just mean using an outhouse instead of a toilet or drawing water from a well instead of a faucet.

Today, it means he will go to bed hungry.

He tells his mother he will help. He will work on the farm to earn extra money. He will find odd jobs after school. He will learn how to fix broken things and how to keep a car running long after it has any business running.

But he knows this is only part of the solution. He promises himself he will stay in school while working. He won’t sacrifice his future.

He will find a path that leads somewhere other than this kitchen and its empty pantry.

I ask Dad if he’s ready and he nods.

He lifts his arms enough for me to slip a gait belt around his waist and leans forward so I can adjust the strap. Then I take my place on his left side and hook my arm around his waist to pull him into a standing position.

It’s late June of 2020 and Dad is back home after three weeks of rehab in the hospital. The doctors don’t think he had a stroke, though he has some symptoms. More likely, they say, is a movement disorder.

This, it turns out, may be worse than a stroke. Movement disorders can work on a person for years without anyone really noticing. A stumble here. A broken wine glass there. Nothing dramatic.

Eventually, though, it becomes harder and harder for the brain to make the muscles do what it wants them to do. Holding a pen, climbing out of a car, even speaking and swallowing become titanic struggles.

Physical therapy can help. Drugs can help in some cases. But the worst movement disorders are progressive and incurable. They are thieves that take until there’s nothing left.

We don’t know yet what kind of disorder Dad has, but he feels its presence every day. Sometimes, I catch him staring at his hand before reaching for a fork, or at his foot before taking a step, trying to will them to do his bidding.

It’s as if his mind and body made a deal to work together when he started walking and talking and then, suddenly, after 81 years, decided to call the whole thing off.

“Are you OK, Pop?” I steady him once he’s up and make sure his hands are on the walker. “Are you ready to move?”

Mom and I do these exercises with him several times a day. Stand. Sit. Walk. Lift one leg. Lift the other. Raise one arm. Raise the other. Repeat.

We do this because the cruel irony of a movement disorder is that if you stop moving, if you stay in the chair or don’t get out of bed, the disease seems to progress faster and soon you can't move at all.

I’ve embraced the exercise regimen because I believe it will keep Dad as healthy as possible for as long as possible. It also happens to be the only thing I can do, which, selfishly, makes me feel less helpless than I otherwise would.

I didn’t inherit Dad’s handyman skills. I don’t fix clocks or cars. But I am stubborn, like him, and I tackle challenges the way he always did: Identify the problem and come up with a plan.

The problem we need to solve today is movement. So, we will move.

Dad shuffles his feet. Left. Right. Left. He pushes the walker forward with each step while I walk next to him, gripping the gait belt with my right hand. We do a lap around the kitchen and dining room while my mom watches nervously from the couch.

A smile crosses Dad’s face. He knows he’s one misstep from a fall. We’ve learned this the hard way, more than once. If he really wanted to be careful, he’d never get out of the chair.

He stops walking and steadies himself. “Getting tired?” I ask.

“One more,” he says, in a voice that gets raspier every day.

He straightens his back as best he can. I tighten my grip on the belt.

We begin to move again.

I see my father on the couch, a book as thick as an encyclopedia open on his lap.

I’m a teenager, doing homework in the kitchen, and Dad is doing what he does most nights after dinner. He’s reading a book he checked out of the public library about philosophy or history or poetry.

After teaching students to solve math problems all day in his classroom, my father transforms at night into a student of life’s great mysteries. Do we have free will? Is there life after death?

He’s made studying these big questions a personal mission. He’s fascinated by what people believe and why they believe it, and he takes voluminous notes on yellow legal pads as he reads.

Sometimes, he looks up from this work to ask me or my sister a question like, “Do you ever wonder why there’s something instead of nothing?”

But it’s poetry Dad loves most. He often quotes lines from William Blake or Robert Frost or even Johnny Cash. But if there’s a poet he keeps coming back to on nights like this, when the house is quiet and his work is done, it’s Dylan Thomas.

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

He repeats those lines from memory, like a mantra. I listen to him and fall in love with the cadence, the mad rhythm of it. But I’m just a kid. I don’t understand why this poem, more than any other, means so much to a middle-aged man who is watching his children grow older and his hair turn grayer.

I don’t hear the urgency in those words, not like my father. He hears it growing louder every day.

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Dad holds the bed rail with his left hand while I tuck my arm under his right shoulder.

He nods once and I count to three. He pulls as hard as he can on the rail while I lift his right side and then quickly loop my other arm under his legs and swing them over the side of the bed. We strain together until he’s sitting upright.

It’s November 2020 and this is now our morning routine. It requires both timing and precision. If one of us is off just a little, Dad will fall back onto the bed and we have to start over.

Every day is harder than the last. A month earlier, he could pull himself up with minimal help from me and Mom. Two months earlier, he didn’t need us at all, at least until it was time to stand and walk.

Dad will plateau for a few weeks, settling into a routine that feels manageable, and then, one day, he falters. Some small thing he used to be able to do – grip a cup of water, roll over in bed – he suddenly can no longer do.

And once it’s lost, it never comes back. No matter how hard he works on his exercises with me and Mom or on his rehab with the home therapist, it’s gone forever.

My approach to this problem hasn’t changed since he got home from the hospital: Keep him moving. No matter what, no matter how hard it gets.

Dad leans forward on the walker, still seated on the side of the bed. After a few minutes to gather himself, he puts his hands on the walker, I strap the gait belt around his waist and together we get him standing.

The 30-foot walk from his bed to his chair in the family room is the most dangerous of the day, riskier even than navigating safe passage to the shower or the toilet. Mornings are when he’s weakest, and Dad outweighs me by at least 60 pounds. If he starts to lose his balance, which is happening more frequently, I need to act fast.

This time, we make it without incident. I take this as a good sign, because today is an important day. We’re leaving soon to see a specialist in movement disorders. We’re eager to get some answers.

When we arrive a few hours later at the doctor’s office, he runs Dad through a series of simple physical tests. Lifting his leg. Squeezing his hand. The doctor takes notes and asks questions, but since Dad’s voice is almost completely gone now, I act as an interpreter for him, finishing his sentences and filling in the blanks on his medical history.

I ask the doctor what he makes of all this. I’ve spent countless hours reading articles and research studies about movement disorders, but what, exactly, is this? And what can we do?

He explains that answering those questions is an inexact science. There is no test, no way to get a definite answer. But the truth is, it may not matter. There is no cure. The drugs Dad has been taking have had little or no effect. His disease is progressing.

I don’t ask the obvious question that’s now hanging over all of us. But Dad does.

He swallows hard, the way he does before attempting to speak, and manages two words.

I see my father entering the condominium through the front door and making his way from the kitchen to the family room to the bedroom.

It’s 2015 and my parents are looking for a new home in Cincinnati. They’ve decided to move closer to me, my wife and our kids.

I’m happy about this, but also a little surprised. This won’t be an easy move. They have many friends and relatives back home in Cleveland. Dad loves working on his lawn and garden. Their dog roams a big, fenced-in backyard.

And their house, the house I grew up in, is filled with the memories of our family’s life together.

What I don’t know, what none of us will figure out until years later, is that something else is weighing on my father.

We don’t see it, even though the evidence is all around us.

Dad is dropping things more often. Plates. Water glasses. A lamp that he hid from Mom in the basement after knocking it over and breaking it.

He stumbles more than he used to. He moves cautiously. He clutches the railing when going up and down stairs. Once, at a rest stop on the way to visit us, Mom found Dad sprawled on the grass.

When she asked what happened, he waved her off. “I just tripped,” he said.

None of this, in isolation, seems like a big deal. People break things and drop things all the time.

But I’m certain now, looking back, that this is on my father’s mind while he tours the condo with Mom.

After years of gardening, he wants a place where he won’t need to mow grass or weed flower beds. After years of living in a two-story house, he wants a place where he can live, sleep and bathe on one floor if necessary. After years of fierce independence, he wants to make sure he and Mom not only live closer to me, but just a few short minutes away.

Dad sees this coming before any of us. He may not know what it is. He may not know how serious it is.

But he knows he needs to be as ready for it as he can be.

When I arrive in the morning to help Dad get up, I can tell Mom is more worried than usual about him. I’m worried, too.

It’s early December 2020 and Dad is getting worse.

About a week earlier, while doing his leg exercises, he stopped and shook his head, exhausted from lifting his feet about two inches off the floor. He locked his eyes on mine and strained to speak.

Then he reached for his pen, which we’d fitted with a foam grip so he could hold it, and began writing on his yellow legal pad. He struggled with every word, misspelling several. But the sentence he wrote was as clear as any I’d ever read.

“The goal is not to live as long as possible but to die comfortably.”

I’d been telling him for weeks, whenever he mentioned hospice, that I didn’t think he was ready for something like that. But in that moment, staring at the words he'd written, it occurred to me that maybe I was the one who wasn’t ready for something like that.

It occurred to me that maybe, for a long time, I hadn’t been working so hard with Dad on his behalf, but on my own. And that maybe, all along, the problem he was trying to solve was different than the one I was trying to solve.

I wanted to save him because I didn’t want to lose him.

He wanted to die with dignity.

Mom and I called hospice. They delivered a hospital bed, so Dad could stay at home, and they sent health aides and a nurse to visit every day to help us with his care.

And yet, when I arrive this morning in early December, my goal is the same as it’s always been: Help Dad begin his day by getting out of bed. Because if he can’t, there’s no going back. The last stage of dying in the hospice handbook will no longer be theoretical. It will be here.

Mom tells me she’s not sure. He seems more tired, more woozy than usual.

I loop my right arm behind Dad’s shoulder and lift, then swing his legs over the side of the bed with my left arm, the way we’ve done for months. I position the walker and, together, we try to stand. His legs buckle. We try again, and they buckle again.

I kneel beside him, my hand on his leg. He doesn’t try to speak. He just looks at me and puts his hand over mine.

“I love you, Pop,” I say.

Then I help him back into bed.

I see my father in the family photo on the bookshelf on the first floor of the condo, next to his books on history and philosophy and poetry.

In the picture, he’s sitting next to Mom and is surrounded by me and my sister, our spouses and our kids. It’s one of the last times we were all together in the old house, before the move. Before Dad got sick.

I spot the photo while hunting around the lower level of the condo for Dad’s old toolbox. It’s the spring of 2021, about four months after we lost Dad. I need the tools because the handle on the condo's front door is broken.

I find the toolbox and carry a pliers and a couple screwdrivers upstairs. Mom is in the kitchen watching me, wondering, I'm sure, if this is a good idea. Given my abilities as a handyman, it’s entirely possible I’ll leave this door in worse shape than I found it.

There’s a reason Dad once gave me a toolbox with little labels on all the tools, like “pointy end down” on the screwdriver and “this end up” on the hammer.

But our options are limited. Dad isn’t here to fix it.

I Google “door handle parts” on my phone and set out the tools the way Dad did when I was a kid watching him fix clocks or cars or lawn mowers. Everything I need is here, I tell myself.

There’s a way. I just need to find it.

I take apart the door handle and fiddle with the pieces until I spot the culprit: A spring that’s gummed up and locked into place. I loosen it with WD-40, reassemble the parts and reattach them to the door.

Once everything is in place, I push down on the handle. It moves smoothly and the door slides open.

Mom walks over and gives it a try. “Dad would be proud,” she says.

I wipe the grease off my hands with a rag and gather up the tools. Then I carry them back downstairs to the place where Dad left them.