My Dementia Diary 41 – Reality Check

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

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

“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

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My Dementia Diary 39 – My Mockingbirds

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

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My Dementia Diary 38 – Naked in the Night

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

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My Dementia Diary 37 – Does She Dream?

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

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My Dementia Diary 36 – A Picnic in the Park

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

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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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