The Emptying Hourglass

You probably have that person in your life who is on the forgetful side.

The family member who might now and again leave the burner on after boiling water for tea. Now imagine if that person left the burner on, without fail, every time he used the stove. Now imagine that he doesn’t even need hot water, but just walks over, turns on the burner, and walks away. That’s my dad. 

Ten years ago my father was diagnosed with a rare form of early-onset dementia known as Pick’s Disease. I was teaching on the Big Island of Hawai‘i at the time and my parents were in Washington State, the Pacific between me and his slow slide into dementia. 

During the first two years following his diagnosis, the occasional video call left me acutely aware of the velocity with which I was losing my dad. He’d be mid-sentence and suddenly go quiet, forgetting a word or his train of thought. He’d ask about my baby boy, even though my wife had recently given birth to a girl. A curtain was closing over his mind. 

My wife, Kristin, and I had fled the omnipresent grey of Seattle with the dream of raising a family in Hawai‘i. I’d found a job teaching at Hawai‘i Preparatory Academy, we had an apartment at the foothills of Kohala mountain, and our one-year-old, Matilda, was taking her first steps on soft sand beaches. The decision to move back to Spangle, Washington, the tiny farm town of my childhood, was not an easy one, but I felt compelled to squeeze in a little more time with Dad before his mind left him completely. We would trade in sunset beach dinners and volcano hikes for rodeos and wheat fields. 

Waimea, Hawai‘i is no major metropolis, but it sure feels like one juxtaposed with Spangle and its 300 inhabitants. After nearly two decades of globetrotting and putting as many miles as I could between my small-town roots and me, I suddenly found myself moving into my deceased grandmother’s house and living a mere three blocks from my folks.

Presently, Mom has a professional caregiver at home with her seven days a week. She can no longer haul Dad up off the carpet herself when he has one of his seizures, can’t lift him from the toilet when he forgets how to straighten his legs, can’t coerce him into releasing the randomly applied vice grip to her wrist while attempting to feed him. But eight years ago, when we first moved to Spangle, and before things had gotten so bad, when Mom was off at work the TV was Dad’s caregiver. His days were dedicated to such reality show juggernauts as Man vs. Wild, Dirty Jobs, Deadliest Catch, and of course, Shark Week. I’d swing by in the afternoons, sit and watch some TV with him. 

At that point he could still get out a few words before synapses crashed into a forest of plaque. He never finished a sentence, which made for a fun game of context clue. The old fill-in-the-blank. A shark would chomp a surfer’s foot and he’d say, “Now that’s a…” 

And the game would begin. “...tasty appetizer?” He’d shake his head no. “...rough start to the day?” No. “...sign you should probably re-enroll in community college?” He’d laugh, but no. 

With any brand of dementia things progress and regress at odd intervals, more ebb than flow, but with a strange sort of consistency nonetheless. Some days go well, some not so well, but it’s easy to slip into thinking you know where things stand. Yet, just when you think you’ve got it sorted out, and maybe you’re at peace with the current state of confusion and complexities, out of the blue something will happen, and you realize that your loved one has entered a new stage, more disturbing than the last. 

Following a few months of afternoon pop-ins, I opened the front door and was met by a new stage: Dad, standing in a panic. Before I could get to the kitchen and turn off a burner, a wall of noise stopped me cold—the TV turned up to the highest possible volume. It blared something about a Florida boy and his sister dragged out from the shallows. Dad’s pallid face was more terror-stricken than that of the Shark Week siblings.

Completely overwhelmed, he tried, but could not, form a sentence. Holding the remote in his loose grip, he eyed the thing as if it were a coiled snake ready to strike at any sudden movement. 

I grabbed it, pointed it at the TV, and turned down the volume. 

He stared at the television, at the remote in my hand, then to me. Finally, he closed his eyes and sighed the long, empty sigh of a man lost to the woods, resigned to the likelihood of not being found. 

I helped him back to his chair. Even with the television at a reasonable volume his hands continued to shake. A drop of sweat slid past his temple. That’s when I took note of another issue. He smelled of shit. In all the bedlam, he’d lost control of his bowels. It was another first. I hurried to the kitchen and turned off two of the four burners. They were bright red and the scorched metal smell, combined with that of his shit, left me struggling for breath. I stood there staring at the red stovetop for a long time, appreciating that, yes, we had just crashed into the next stage of his dementia. 

When I took my undergraduate degree in Sports Medicine to Seattle, one of my first jobs was at a nursing home. I would be helping a resident through a sequence of range of motion exercises and because of a combination of meds, age and strain there was the occasional accident. I’d walk them and their walker into the bathroom and assist with the cleanup on aisle two. All part of the job. Never pleasant, but you pull up your blue latex gloves and do what you have to do. At the nursing home, whenever I wiped a backside, I’d silently recite Dr. Suess’ “Oh, the Places You’ll Go!” because, let’s face it, no child lays awake at night dreaming of the day he’s mastered the art of a five-wipe or less octogenarian clean-up.

But there’s a huge difference between wiping the bottom of a nursing home resident and that of your dad. None of the residents taught me how to drive, how to change a tire. With none of them did I sit in a little boat at five in the morning, fishing on Badger Lake, chatting idly for hours as the sun rose over the mist of forest. And when my first marriage imploded, none of them drove cross country for two days to pick me up and drive me home. None of them pulled me through that dark time with some of the sagest advice a father could offer his adult son in distress. None of them were my dad. And he had just turned a corner, which meant he would slip further away from us soon, and before long he would be all the way gone. Here, but gone.

A particularly sinister aspect of dementia is that, over time, it begins to erode your own memories of the afflicted. A cloud of disquiet coats the rearview mirror, leaving you squinting for clarity. It took a concerted effort for my mind’s eye to travel back to when he was himself, to see past this fog, so pressing and ever present it left little room for the good old days. 

Of all the memories I strive to hold on to, and the one that best encapsulates our once unshakeable alliance was that cross-country drive following the collapse of my first marriage. 

I was broken when he met me and my U-Haul in Salt Lake City. We transferred the sad remnants of a sudden divorce: a rumpled pile of clothes, my laptop and coffee pot, into his truck. Over the next two days, we drove north through Utah, into southern Idaho, crossed through Montana, northern Idaho, and into Washington State, where we’d land in Spangle and I’d attempt to reset my life.

I find it hard to put into words just how perfect he was over the course of that road trip. At the U-Haul center, he embraced me and didn’t bat an eye at the tears falling from his grown-man son. As we drove, he could sense when I needed to rant about a wife who’d just left me for her spiritual guru, or when to sit comfortably in our silence. When I asked him for advice or brought up a new point of outrage, he would listen with his whole heart, and after thinking on it, sometimes for miles at a time, he’d offer me, in his no-nonsense style, useful, practical guidance. He felt for me. He was there for me. Simple and perfect as that.

At one point, driving through Montana he slowed to a 35-mph crawl on the highway and pointed out my passenger window to a sloping valley. 

“What’re you doing?” A line of cars zipped past us in the fast lane. The car directly behind us shot off an annoyed honk before skirting past when the lane was clear.

“Look at that,” he said. 

“Jesus!” About a hundred yards off, a grizzly chewed at the guts of another large animal. A young deer if I had to guess, but with its intestines yanked out and splattered in its own blood it was hard to say. 

“The grizzly... That’s Cassandra,” he said. “And the deer,” he smiled at me, “well, that’s you, I’m afraid.” 

I don’t think I’ve laughed so hard in my life. 

After helping him in the bathroom, I waited until he showered, made sure he was back in clean clothes and settled in his rocking chair with a mug of coffee. With the sharks having had their fill, I flipped the station to The Ellen DeGeneres Show. Ellen, to this very day, has a way of soothing him.  

I thought about sitting with him for the hour it would take before my mom was home from work, but he wasn’t starting any sentences and refused to make eye contact, so I figured it best to let him be.  

Dad was always a walker. Whether it be the classic after dinner loop around town, or when we were kids, a stroll through the nearby wildlife refuge and wetlands. As children, my brother, sister and I spent hours with him, binoculars in hand, traversing muddy trails where wild grass taller than my head swayed in the wet breeze. We would trade off shoulder rides to better spot the redhead ducks, trumpeter swans, yellow-headed blackbirds, moose, beavers, and flying squirrels. 

Maybe it’s a little boy’s perception of his superhero father, but I remember him as a giant of a man who never tired. But with dementia-Dad, taking a walk, even around town, was not so simple. To begin with there’s the shuffle step that’s more cross-country skiing than it is walking. The soles of his shoes never really leave the safety of ground. And in Spangle, with its abundance of graveled roads, treacherous terrain abounds. 

Following a long frozen winter, it was late March before the snow and ice thawed enough for us to give it a go. The sky was grey and cold, the kind of chill that knifes through a parka. I helped him down our porch steps and he smiled, pleased to be back outdoors. He lit up and said, “Now this…” 

“...feels better?” I tried. He nodded happily. 

I wasn’t in the habit of holding on to him then. The last time we took a walk back in October, before the first of the snows, he’d moved around town just fine. This time we didn’t get very far, maybe twenty-five yards down the road before he shuffle-tripped on the gravel. I reached out and broke his fall some, but he was left scraped from wrist to elbow, his rain jacket shredded at the forearms. 

I got him back inside and cleaned up, applying gauze wraps along the length of both forearms. From that day forward we walked arm in arm, carefully making our way. The man who once carried me high above his shoulders for miles at a time now needed a good portion of my strength and concentration to avoid further spills. 

Roles shift. It’s part of the aging process. But when the dynamic flips too quickly it’s the emotional equivalent of quicksand. I wasn’t ready for this, and the more I struggled, the more his disease seemed to pull me down with it. I had imagined this day might arrive, someday, but not until my parents were in their 80’s or 90’s… certainly not in their 50’s. I shouldn’t be cleaning up after his incontinence, holding him up on walks, nursing cuts and scrapes. 

The shift took place at a dizzying pace. No time to make peace with it. No time to prepare. I’d left a good job, a good life in Hawai‘i to sneak in this quality time with my hero, but there was little quality to this time. We weren’t communicating much. Not for lack of want. He just couldn’t anymore. 

He wasn’t able to spend the time I’d envisioned with his granddaughter. She made him nervous. If Matilda toddled towards him he looked pleadingly at us, hoping we would stop her. If she sat in his lap, his hands shook. If she swiveled around to look at him, he turned his gaze out the window. He didn’t know what to do with her. He’d flinch and stiffen with her touch, seemingly afraid of accidentally injuring her. 

Matilda would never know her grandfather. Not really. Not as himself. Rather, she would only ever remember this ever-nervous, confused version of a grandpa, a man whose once rich brown eyes had turned to grey. She grew fearful of him and they would never bond.   

Following two years of small-town living, it was time for us to go. More to the point, it was time for me to go. Some people, like my mom, can caretake for a loved one for years on end with no finish line in sight. But I could no longer do it. Though she never spoke of it, she must’ve noticed the heaviness that I began to carry around with me; a heaviness that I tried to keep hidden from her. Of even greater concern, our own relationship began to grow strained. We no longer joked around or playfully gave each other a hard time, as was our way. 

My wife, Kristin, remained saintly throughout our time in Spangle, assuring me that she would give eastern Washington as much of a go as I needed, but I’d come to the realization that a healthy space between Dad’s disease and my own family’s path was vital.   

Through a former colleague, I was told of an opening at my old school, Hawai‘i Preparatory Academy. The teaching position came with a three-bedroom cottage on a breathtaking 26-acre campus. 

I applied and got the job. We would be moving back to the islands in a month. 

After putting off telling my parents for over a week, understanding that it would shatter my mom, I broke the news. Sitting out on their back patio, I struggled to explain why I would be taking my family back across the Pacific and landing on the same volcanic island from which we’d come. 

“It’s a great school. With Matilda starting kindergarten soon, she’ll have access to a world-class education in a safe, beautiful place.”

“You know I won’t be able to travel as Larry gets worse.”

“I know. I’m sorry, Mom. But we’ll head back on breaks. Nice thing about teaching, we get months off at a time. We can still spend summers with you.”

She’d fiercely bonded with Matilda over the last two years. “You just miss so much over those long stretches. You miss everything.” 

“We’ll Facetime every week.” 

“Can’t hug a computer.” She began to cry. 

At that stage, it was rare that my dad could get out more than a word at a time, if that. But there on the patio, he suddenly blurted, “I would! I would if I were you!”  

Mom wiped her eyes and stared at him. Then, “Well, look who’s come to the party.” She leaned into him and with her fingers stroked his hair. 

I was trying not to cry. “Thanks, Dad.” 

He nodded. 

“Love you, Dad.” 

He looked at Mom and smiled. She kissed the stubble of his cheek. 

He turned back to me. “Just…” 

And dementia-Dad was back. I gave it a go. “Eat lots of pineapple?” It was his favorite fruit. 

He shook his head no. 

“Get Matilda into Hula lessons? Already looked into it.” 

No.

“Watch out for sharks.”

He nodded, laughed.  

We’ve been back in Hawai‘i for a few years now. We had a second daughter, Finley, leaving Mom an ocean away now from two granddaughters. With the pandemic, those promises I made about visiting during school breaks have all but died. She, being Dad’s primary caregiver will not travel. She won’t risk being away from Dad for an extended period of time. Despite the slow torture of watching her husband turn into an entirely different person, of watching him disappear from himself, she stands in the muck. Even if the constant stressors, heartbreak, the physical and emotional tolls in her new role as primary caregiver shortens her own life, she will see this through to the end. She would have it no other way.

For over two years now we’ve wrestled with the idea of traveling through airports and navigating PCR tests and quarantines. But it’s not really about us or what we want anymore. We have our two little girls to think of. I have aging relatives in the area who are immunocompromised, and my dad, who's already on borrowed time. What if we, somehow, were to bring the virus into their world and shorten a life?

So for now we video chat, write letters, and send off the girls’ artwork. But Mom’s right; you can’t hug a screen. There’s an insufficiency to our connection that no amount of screen time can remedy.

And all the while my dad slips away. He does not talk anymore. His walking days are done. He lives in his wheelchair, staring mostly at the floor. Mom feeds him and sometimes he chokes. His feet are purple as his circulation worsens. She doubles up his Depends to get him through the night. When we call, she will point the phone in his direction. I wish she wouldn’t and then feel awful for having that wish. It must make her feel better, showing me that he is still there. 

I don’t know whether to be thankful or mournful for the role Covid has played in keeping me apart from him as he sinks into the shadows. Is it possible to be heartsick about a great loss, yet grateful not to marinate in it? Either way, I wear guilt like an invisible cloak, and wonder if I always will. Meanwhile, my wife and I take the girls on hikes in the rolling green foothills and pu’us of Kohala Mountain behind our cottage. The outdoor time, of course, reminds me of boyhood adventures with Dad. 

We push away from the dock in that rust-speckled boat. We glide through wheat fields on the outskirts of town and let the stalks tickle our palms. In a heavy snow he pulls me on my sled along empty streets until well after dark. 

His doctor says the disease is accelerating. Dad will enter into hospice care soon and there is the distinct possibility that I will not see him alive again. I sit atop the pu‘u with my youngest in my lap, her sun-streaked hair blown sideways in the trades. I close my eyes and breathe her in. She is the golden wheat fields of my youth; she is the mist rising from a pre-dawn lake. She is how a smile breaks through the tears.

---

Banner image by Pruthvi Sagar A R. Image by the author.