Tag Archives: life journey

My Dementia Diary 34 – Denial

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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

You might also enjoy: My Dementia Diary 30 – Fragility, My Dementia Diary

My Dementia Diary 33 – Still Water

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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

You might also enjoy: My Dementia Diary 30 – Fragility, My Dementia Diary

My Dementia Diary 32 – Sometimes

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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

You might also enjoy: My Dementia Diary 29 – My Kato, My Dementia Diary

My Dementia Diary 31 – An Inconvenience

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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

You might also enjoy: My Dementia Diary – Beginnings

My Dementia Diary 30 – Fragility

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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

You might also enjoy: My Dementia Diary 29 – My Kato, My Dementia Diary

My Dementia Diary 29 – My Kato

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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

You might also enjoy: My Dementia Diary 28 – Resets, My Dementia Diary

My Dementia Diary 28 – Resets

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We have a routine. Except for the rare appointment or when things go sideways, we do the same things everyday. This stability of sameness comforts my wife. It is easy to fulfill her simple expectations. We get up, we walk, we visit the grocery store, perhaps the library.  Then, return home and eat breakfast. In the afternoon, she colors and I write. Often, our kids will call via video conferencing from one of the three different continents they live on. Then, time for late lunch, which serves as our dinner. Another walk, maybe an ice cream cone stop. By then, the sun is dropping and we head for bed.

However, with increasing frequency, our days don’t go that way. Something happens which sets off my wife’s fragile mind and she has a meltdown. She’ll get anxious, thinking something is wrong with someone in the family. We need to call, but no one answers. Or, I’ll get upset with something I can’t do and mutter some angry words. Her response will be, “why are you angry with me?” I’m not, but that’s whaat her mind grabs onto. The past week, she’s been arguing with the images in the mirror, no longer able to realize they are reflections.

There’s a long list of little things that can upset our daily pattern. When this happens, I’ve learned to drop whatever I’m doing and make a radical change.

It’s time to reset, do something different that takes her mind in a different direction.

Go for another walk, visit the taco truck for a burrito or the coffee shop for hot chocolate, anything that provides a radical change in environment which gives her mind something else to focus on.

Fortunately, she never resists. As long as we’re doing something together, she’s happy. Moments after we’ve left home for a new experience, she’s a different person, whatever was bothering her has been forgotten.

Lying in bed at night, I play back the day’s memories. If I recall smiles and happiness, we’ve done well. 

And I go to sleep knowing tomorrow will be a new adventure.

tio stib

You might also enjoy: My Dementia Diary 27 – What’s Your Name, My Dementia Diary