My Dementia Diary 35 – A One Act Play

Each day, every day, the curtain goes up on their one act play. 

The early morning hush is broken by her voice, “are you coming to walk with me?”

He rubs sleep from his eyes and answers, “yes, I’m coming.”

The blind man and his demented wife have said these lines well over one thousand times. The play, a new day, begins again.

They make the bed, dress, go out for their morning walk. She babbles on about family and friends who no longer come to see her. His mind drifts about, from birdsongs to the sunshine’s warmth, affirming as needed-

“Yes, I love you.”

“Yes, everyone is well.”

“Yes, it is a beautiful day.”

They stop to sit on a bench, inhaling fresh sea air, soaking up tranquility. He hears a distant train, a nearby bird. 

She asks again, “do you love me?”

“I will always love you.”

Inseparable, they walk on, greeting passersby. She coos to babies, stoops to pet dogs, fills the world with smiles. They shop, bank, deal with life’s necessities, then climb the hill for home.

There are meals to make, chores to do. These done, they sit at their desks, soft music playing. She whistles happily, coloring simple designs, her way of making beauty. Content in this peaceful bubble, he writes, seeking beauty with words.

“Look!” she pleads, confronting him with her finished pages.

“Wow!” he exclaims, blind to her colors but seeing her needs.

Later, she gets bored, and they go back out into the larger world, stop for coffee or ice cream, chat with neighbors, then climb the hill again.

Sometimes there are cameo appearances, short lived visits from family or friends. The script changes little. The show has even gone on the road, played for months in other towns, but the actors returned to the stage they loved best.

Day darkens and, holding hands, they wander down to the overlook,. She  surveys  their community, their town, and describes the people scurrying about on Main Street, the sailboats flying by on the distant water, the colors of the clouds above.

 They hug and kiss and head home.

The curtain falls. No ovations, no encores, no flowers tossed upon the stage.

***

As I lie in bed, waiting for the bliss of sleep, the day’s scenes play again, the smells, the sounds, the precious moments when she was happy.

She is the only audience I care about.

tio stib

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My Dementia Diary 34 – Denial

Denio, Nevada is as close as you can get to nowhere. I know, I’ve been there.

It’s a long road trip. Highway 140 winds its way east from Medford, Oregon over the Cascade Mountains and across the unending emptiness of eastern Oregon. Hours later, after leaving the civilization’s frontier at Lakeview, you drive for miles without passing anything but scrub junipers and sagebrush, with perhaps a fleeting glimpse of an antelope. It’s a vast vacant world of forever skies and boundless vistas.

It’s a world I love. A place my soul calls home.

(Yes, this post is about to become much longer than recent writings. The fingers of my left hand, now freed from a cumbersome plaster cast, are dripping with words. I can type with two hands again!)

Eventually, Highway 140 drops down into Nevada and slips, barely noticed, through desert flatlands, past craggy basalt ridges, and around alkaline lake beds until it bumps into a small dot on a road map.

You have arrived in Denio.

There’s not much here, likely even less than when I last visited a dozen years ago. At that time, the most notable sign of civilization was a roadstop restaurant/bar/gas station. This is where I began my search for Denio Hot Springs. But, back to that later.

After Denio, the highway goes on, a thin line shooting straight into a shimmering, infinite landscape. Speeding mindlessly through this mirage, windows wide open to the rush of baked desert air, the mind is sucked clean by space so big that mere thoughts cannot cling to consciousness.

This is a journey that confronts denial head on. This is where falsehoods are stripped away and only the bare roots of truth remain. This is a road I’ve needed to travel many times, choosing this lonely highway when I’ve felt my head filled with conflicts created by fear, loss,  and spiritual conflict.

This is a trip I need to take again because denial is biting me in the butt.

Every day I deny the reality of my wife’s dementia. It can’t be true, it’s not happening, it will go away. But, then, she’ll do something, say something, that makes it painfully obvious that the disease is here and here to stay.

So I’m back on the road, traveling in my mind to Denio, Nevada, letting the mental crap that I’ve allowed to clutter up my head slowly fall away, letting the pure essence of truth light up the dark corners of my soul. And I find myself streaking through the timeless Universe of being enveloped by a sense of deep peace.

The road from nowhere returns to somewhere when it  sneaks back, through scattered alien mobile home sites and derelict car bodies, into Winnemucca, Nevada, and I re-enter the human world cleansed and whole again.

***

There is a hot springs near Denio, known to the locals but a well kept secret. I bought a lot of beer at the Denio Bar, listened to a lot of stories, before an old timer’s lips loosened up to share the spring’s whereabouts. Guided by word of mouth, I set out to find my Shangri-La.

Thirteen miles to the unmarked turnoff, past the rocky cliff that nearly fell into the road, leaving the pavement and out into the desert trailing a rising cloud of billowing dust. The barbed wire fence ended and I entered the open range, searching for the next marker, a small trail to the left. bumping over a cattle guard, twisting around clumps of sagebrush, finally braking at a pool of quiet water with a cloud of white mist floating over it.

Denio hot springs is an oddity. Most such springs are laced with the smell of acrid sulphur, but not here. These steaming waters spring out of the desert and wander for several miles until the waters drop into a hole that someone, years back, carved out with a backhoe. There’s even a section of concrete culvert pipe that was put in place to create a waterfall, the most amazing shower I’ve ever known.

This is Nature’s ultimate hot tub, the idyllic combination of warm water serenity engulfed by infinity in every direction.

I remember the moment when, on a crisp, cloudless October morning, I stepped naked into that pool and slowly immersed myself in the warmth of Mother Earth’s womb, lost in the wonder of being nothing in the middle of nowhere.

It was then that I saw the spider, an arms length away, motionless on silky strands hidden in the shadows of the pool’s walls. A black widow with the telltale crimson dot on its abdomen, waiting, patiently, for another life to touch its web.

We are never alone.

Often, when today’s realities overwhelm me, when I’m tempted to hide in the darkness of denial, I take my mind back to Denio Hot Springs, feel the sage perfumed air fill my lungs and let the boundless expanse of desert free my soul.

Then, as happened so many years ago, I  climb out of that enchanted pool, that blissful memory, dress, and get back on the road again.

Love calls.

tio stib

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My Dementia Diary 33 – Still Water

This morning was unusual. For weeks , the days have started with a cool breeze shaking the trees, forcing me to pull up the zipper on my jacket, our walks beginning with some urgency, a need to get the blood circulating for warmth.

Not so today. This morning, we opened the front door to the immensity of quiet. not a sound, Not a breath of wind. It was as if someone, somehow, had put life on “pause.” 

We walked through this spell of silent grace down to the shore,  finding a sun warmed bench to sit on. The water was absolutely still, not a whisper of waves lapping on the beach. Breathing deeply, I marveled at how peaceful I felt as the endless stress of caring for my wife melted away.

We held hands and savored the bliss of carelessness.

Others, similarly entranced, passed by. Each answered our greetings with soft friendliness. Finally, as we rose to leave, one woman shared with awe,

“It’s so calm!”

Yes, and I so needed it.

tio stib

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My Dementia Diary 32 – Sometimes

Sometimes I find myself thinking everything is the way it used to be, I can see and my wife is an intelligent, rational adult. Sometimes, for a moment, I believe this is true.

Although when I open my eyes, all I see are blobs and blurs, I dream in vivid color and exquisite detail. My dreams are so real, I often awake expecting to be adventuring with my wife again, young and wild and free once more.

It doesn’t work that way.

Sometimes the world inside my head is more appealing than the world  outside.

tio stib

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My Dementia Diary 31 – An Inconvenience

A recent surgery which repaired a hand and left one arm in a plaster cast, has reminded me that some things are much more easily done with two functional paws, including-

tying shoelaces
buttoning jeans
zipping up jackets
cutting up food with a knife and fork
washing dishes
flossing teeth 

Fortunately, this inconvenience will only last two more weeks and then I can stop trying to type with one finger.

Be grateful!

tio stib

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My Dementia Diary 30 – Fragility

We are both fragile. My wife’s dementia makes her insecure and needy, easily upset by an angry word or errant action. My blindness has left me unable to do much of what I used to do, often leaving me frustrated with my limitations.

Our fragilities don’t mix well.

As my wife is no longer able to adapt rationally to most of what happens around her, including my behavior, it’s up to me to be the adult in the room, to control my responses, to avoid hitting her hot buttons. 

Painful experience has taught me what those buttons are. I’ve learned to respond immediately to her requests for attention, no matter how engrossed I might be in some project. It takes very little to cause a mental and emotional meltdown which results in a lengthy period  of comforting to restore harmony.

I still screw up, but I’ve learned how to avoid this anguish.

I’ve learned to be cheerful even when I’m not feeling it. I’ve learned to stuff anger and negative feelings that would set her off. And, I’ve learned such discipline is a good thing.

Stopping to make lunch instead of vanishing into an hours long obsessive compulsive writing frenzy is a good thing. Taking a break in the middle of the afternoon to walk with her and get an ice cream cone is a good thing. Pausing to enjoy my wife’s excited descriptions of hummingbirds flitting by the feeder is a good thing.

Being mindful of our fragility and letting my wife teach me how to live fully is a good thing.

tio stib

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My Dementia Diary 29 – My Kato

In the hilarious “Pink Panther” film series, the bumbling Inspector Clouseau has a valet named Kato. Beyond his man servant duties, Kato is tasked with keeping Clouseau on his toes, making sure the policeman’s mind is always keen, ready for anything.

Kato does this by surprising Clouseau at unforeseen moments. He jumps out from behind a curtain, drops from a chandelier, or appears inside a closet door. A fight ensues, and the two combatants proceed to destroy everything in sight as they battle each other.

I have my own Kato. Her name is Maria.

Fortunately, she is far less destructive than her movie namesake. However, She is equally silent, ever present, and constantly surprising me. Although my hearing is quite good, she has the uncanny knack of sneaking up unheard.

Bending down to tie my shoes, I’ll suddenly hear a voice in front of me, “do you need help?”

I’ll be immersed in a stream of warm water and the shower door will open, “are you okay?”

Then, there’s my breakfast routine. Being blind and needing to be organized, I’ll first set everything  I’ll need on the counter, bowls, spoons, measuring cup, fruit, hot cereal. Then, I’ll put a pot of water on the stove to boil. When it starts steaming, I’ll turn around for the hot cereal and…

The counter has been cleaned. Everything has been put away, often in unexpected places. My Kato has been busy.

“Do you love me?”

“Always.”

tio stib

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