Tag Archives: care giving

My Dementia Diary 43 – The Last Christmas

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I’ve struggled with this post, started and stopped it many times, unable to create any sort of writing momentum. I sense this is the result of a month in Mexico, spending the Christmas holidays with my wife’s family in a world that is quite foreign to me.

I took my wife to her home town because I felt it might be the last Christmas she would be able to remember who her family was. It was a trip that had to be made. It was a trip I’ve avoided since I lost my sight as the world there is a blind person’s nightmare. It is not only a never ending physical obstacle course for the disabled, but it is also noisy, dirty, and unsafe. I spend the entire time there in survival mode, just trying to stay sane.

Needless to say, any urge I might have had for creative writing quickly disappeared. 

And so it went for a very long month. yes, the family was glad to reconnect with my wife, especially our two oldest kids. It was interesting to note how different family members interacted with her. I was impressed that her mother, normally quite loud and outspoken, simply listened as her daughter babbled on and on, repeating questions, often making no sense. Mom was simply happy to have her daughter with her. Our daughter, though, kept telling her mom to speak Spanish instead of gibberish. That wasn’t going to happen. She couldn’t accept her mom’s dementia. 

After days of dragging us around doing errands and my wife getting upset with the continuing chaos, our son realized he was going to have to change his attitude and behavior with her. He’d finally grasped that his mom was no longer a rational, intelligent adult but a loving, open hearted four year old. Instead of trying to make his mom fit into his world, he would need to fit into hers.

And so, he just played with her.

That was the high point of our visit.

It has been several days since our return to the States. I didn’t realize how exhausting the journey had been until we returned home. I now have an even deeper appreciation of our simple, ordered life here.

I’m hoping the urge to write will reawaken again.

tio stib

You might also enjoy: My Dementia Diary 10 – Where’s the Spatula?, My Dementia Diary

My Dementia Diary 41 – Reality Check

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We seldom notice the small changes in those close to us, but over time, these changes add up. Suddenly, we are aware of differences. Our children have grown up. Our parents have grown old.

My wife’s dementia has deteriorated.

She is more confused, no longer remembering where our children live, forgetting names and places. She is more fearful, often upset by imaginary ghosts. She needs more help with daily functions, getting dressed, brushing teeth, taking a shower. She cannot be left alone, this causes her extreme anxiety. Her spoken words are often unintelligible, gibberish.

That said, there’s another side to this story. She is still filled with love and joy, greeting all we meet with a smile and “thank you, very good day!” She still loves to color, spending afternoons with crayons and coloring designs as she whistles happily. She is easily directed, no arguments about the right jacket to wear, going shopping, visiting friends, or what I’m serving for dinner.

It has been five years now since I became aware of my wife’s dementia. the mental deterioration process has been slow but all the little losses have added up. She now requires twenty four hour care, although much of the time little direct supervision is necessary. She is more confused and fragile, requiring my careful consideration in in response to her emotional needs.

Still, she is healthy and active, we enjoy our daily walks through town, visits to restaurants, phone conversations with family. But this will change, the disease will further consume her brain, there will come a time where meeting her needs will be more than I can do alone.

For now, I continue to do what we love with the woman I love for as long as we can.

tio stib

You might also enjoy: My Dementia Diary 38 – Naked in the Night, Almost Heaven

My Dementia Diary 40 – When “No!” Means “Yes!”

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“Do you want to take a shower?” I asked her.

“No!”

I asked again, “do you want to take a Shower?”

“No!”

I took off my clothes, then asked one more time, “do you want to take a shower?”

“No!”

Okay, fine, I thought, I’m taking a shower by myself. I was tired, not feeling well, and the thought of soaking under a stream of hot water was delicious. I needed it. I’d asked my wife three times if she’d wanted to join me because recently I’ve had to shower with her to ensure she was washed thoroughly. She enjoys this.

But, she said, “no!”

I lost myself in the showers warm deluge, letting fatigue and aches melt away. Eventually, I turned off the water, dried myself and put on pajamas, then approached my wife, who was lying in bed.

“You don’t love me,” she said defiantly, “why didn’t you shower with me?”

Obviously, I’d made a mistake, something I often do when tired.

Obviously, her previous “no!” meant “yes!”

I’d forgotten that she is now so attached to me that she expects we will do everything together. If we don’t, something is wrong.

It took a lot  of soothing talk and caresses before her anger dissolved and her usual loving self returned. I’ve learned that these situations simply require patience and eventually harmony is restored.

Later, as she slept soundly beside me, I pondered how easy it is to do everything right and still have things go wrong.

Dementia is not a rational disease.

tio stib

You might also enjoy: My Dementia Diary 38 – Naked in the Night, Almost Heaven

My Dementia Diary 39 – My Mockingbirds

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We often hear mockingbirds on our morning walks. It’s hard to ignore them. Male mockingbirds barrage the world all day long with sounds that vary from raucous  noises to sweet songbirds. They are incessant, stringing their auditory outbursts on and on with nary a breath between the various snippets.

My wife and the mockingbirds have much in common.

It seems each day unleashes a torrent of words from  her mind, which is somehow dammed up by night time silence. this verbal flood bursts out just as I lock the door and we step away from home. There are common themes, where are the kids, what is someone’s name, why don’t people call us anymore? the words keep pouring out. Like the mockingbirds, there is no noticeable breath between one thought and the next. 

Then come the songs. Although she can’t remember what we had for breakfast, she does remember songs from the third grade, pitch perfect, every word. She sings, she whistles, and we merrily walk on.

I am blessed by mockingbirds.

tio stib

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

My Dementia Diary 38 – Naked in the Night

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naked in the night
truth stood bare before his mind

lost in Heaven’s dreams
his angel slept beside him
caressing her hair
he remembered that first smile
the joy that had bewitched him

how many smiles were left
how many days, how many years
before joy would disappear

the nearby window rattled
the wind swept Fall away

naked in the night
the tree stood bare before the moon

it would be hours before sleep claimed him

tio stib

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

My Dementia Diary 37 – Does She Dream?

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I feel her sleeping next to me
her softness, warmth, and peace
What thoughts are dancing in her mind
what memories live from distant times
in a life that soon forgets today
what has dementia swept away

does she dream of long lost roads
when skies screamed blue and aspens glowed
when all our moments turned to gold

of dancing barefoot in the waves
running, laughing, in the rain
gathered round the Christmas tree
celebrating family
holding hands on sunset walks
listening as the other talks
smiling babies
hummingbirds
fragrant roses
loving words

I hold her gently in the night
shielding her from nightmare’s fright

tio stib

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

My Dementia Diary 36 – A Picnic in the Park

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Sitting close beside me in the open train car, my wife chattered excitedly as the little steam engine pulled its load of families through the shaded redwood forest. It was a rare day for us, a trip away from home. 

We are blessed with good neighbors, adventurous folks who’d taken us for a picnic in the park, miles away from our small town routine. We’d hiked along a boardwalk to a pond where my wife excitedly pointed me at a row of turtles basking on a sun baked log. She’d squealed with baby pigs at the animal farm and gasped in surprise when a goat yanked the celery stalk from her hand. She chattered gleefully when the music started and her painted zebra moved up and down as the carousel whirled round.

Then, tightly packed, all sat together around our picnic table, sharing sandwiches, treats, and past summer stories in the warm afternoon sun.

The whistle blew , the train slowed, the ride and day would soon end. But I will be forever grateful for the kindness of our special friends.

image7.jpeg

tio stib

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

My Dementia Diary 35 – A One Act Play

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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

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

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 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

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