2024.03 : Oh So Clever

In-n-Out Burger Circa 2024

Home is not where you were born; home is where all your attempts to escape cease.

— Naguib Mahfouz​

Last night. Forty-five minutes before my mom’s bedtime, the flame of anxiety begins to flicker into existence.

“Honey, the Persian Christian club is hosting a large party tonight in the community room. They’re currently setting up, and the desserts and cakes have already arrived. You know how I get every time, without exception, when there’s a party with food in the community room. I become mean, obsessive, and intrusive, only to regret it later. Please grab your jacket and take me for a ride in the rain until they are finished. Afterward, I can calm my mind, relax, and then go to bed.”

You likely don’t even know my mom, and you’re already aware that’s not exactly what she said. And you’d be correct. She thought it, but the words remained unspoken. Instead, we embark on our favorite game of ‘Guess what I’m thinking,’ complete with poorly timed questions and comments.

“Do you want to go for a ride?” she asks as I’m wrapping up a delicate work text. “Please give me a moment,” the interchange repeats three times. I’m thinking I do not want to go for a ride so close to her bedtime in the rain with other work for the client not yet finished and a photo essay that needs polishing. That essay has been rescheduled. I push send on my text, and my mind instantly decodes the true intent behind my mom’s pestering. A small part of her knows what she’s about to experience. She’s asking for my help. She isn’t mistaken in the least; already the menacing fog rolls over her ability to reason.

Off we go. But where? I have no idea. I know I have to keep her away for at least two hours; three is best. Upon our return, it’s guaranteed she’ll inspect the community room kitchen like a health inspector, searching for delicious leftovers her diabetes can’t handle. Ocean or through the mountains to farm country? Weekend traffic rules out the ocean. Through the mountains, we go—a top 20 drive for drivers. Our little adventure begins.

Seventy miles to turn around. We stop for gas, then over the highway overpass to In-n-Out Burger for “a little something for my stomach,” she says. “Protein Style,” unsweetened iced tea, and a quarter of the serving of the fries—a compromise her body tolerates.

Navigating fog, rain, mountains, two-lane farm highways, texters, drunks, dementia chatter, and so on, my mind wanders. After a revelation this week, I began reevaluating my relationship with romantic love—a topic for a future photo essay.

I also contemplate my decision to stop talking to anyone about dementia caregiving because people’s minds can’t imagine the madness and think it’s just an advanced form of forgetfulness. That is unless they respond to my verbal secret handshake in a tone only those who have gone through it can muster. I simply say “dementia sucks.” Anyone who’s been through it instantly resonates throughout their bodies as they channel their memories. They take a deep breath, look you in the eye, and simply respond, “dementia sucks.”

It’s how I envision combat vets communicate with others who have been there. There are things that can’t be adequately understood unless lived. In turn, those experiences can’t be fully shared with others unless they have been in combat themselves.

A sharp curve on a downward slick road, and I spot the headlights of a driver attempting to split lanes, risking all our lives to save 20 seconds on their trip. The driver pulls the chump move, but I live to tell about it.

My mind revisits the analogy. On the surface, the differences between what a combat vet experiences and what a caregiver of a loved one with dementia experiences are so radically different that the analogy is flawed.

What if it isn’t just what occurs on the outside for a combat vet or a caregiver? What if it’s more about the emotional experience of being in those situations that makes it difficult to share with those who have never experienced it?

Steep grade. A semi-truck with flashers signals struggle to ascend at speed. The funnel of cars attempting to pass bunches up, creating a thrilling distraction.

Countless stories I could share, with most “civilians” dismissing 80% as a mere “senior moment.” The other 20% are so disorienting that the only response is to wave them away.

After enough time as a caregiver, all that becomes normalized. What whittles away at the spirit is the shock, disbelief, fear, anger, and sadness the caregiver experiences witnessing a loved one have a “senior moment.” Overwhelming emotions arise, knowing it’s much worse than just a “senior moment.” The horror of knowing it’s only going to get worse. And if that wasn’t enough, there’s the added pressure of learning that the loved one reflects and amplifies any emotion that escapes the caregiver.

Imagine getting short with, having an attitude towards, or snapping for a split second due to a loss of patience with a lung cancer patient for coughing. Now, amplify this scenario: picture the patient having a mental condition that confuses reality every minute of the day. The resulting frustration with a loved one who suffers from that condition leads to lapses of patience. A second afterward, the caregiver mentally berates themselves a hundred times, thinking, “you wouldn’t have been like that with a lung cancer patient who was coughing.”

Another thirty minutes until we’re home, my anticipation building with the expectation that the community room will be closed and the lights out. However, this isn’t the end; it’s just the beginning. “Do you have an antacid?” “Heartburn?” “No, having eaten so late my stomach is turning.” “Can you give me a ten-minute warning if I have to pull over to find a restroom?” “I’ll be fine.” I notice my foot has pushed down on the accelerator.

As we pull up, all the party attendees’ cars seem to have left. We walk into the lobby, turn the corner, and only four ladies are left. Oh no! Head down, I have mom hold onto my arm. Let’s get to the toilet. Fortunately, the community room doors are closed. Mom slows her pace to look through the community room windows, searching for an opportunity for leftover sweets. Passing the door. We made it…

The door to the community room swings open, almost hitting me in the face. It’s the nice lady who knows my mom. “Oh, we have so many leftover cookies and cake, please please take some!” After four hours of traveling to avoid this very moment. Et voila, not so clever after all.

And now… know the photograph.

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