My Dementia Diary 45 – A Different River

In younger years, I was drawn to reckless adventuring. Climbing mountains, sailing oceans, rafting wild rivers, anything that took me to the edge and, often, beyond. One such trip was a float down the Snake River through the Hell’s canyon wilderness. this was a journey into the unknown long before outfitters offered guided versions complete with 5 star dinners.

There were a dozen of us, friends and acquaintances, guys lured by the appeal of an adrenalin packed escapade. None of us had done anything like this before, so we scouted the local bars for advice. One drunk curmudgeon said we’d all be killed, another offered we could do the trip on inner tubes. One thing was certain, Hell’s Canyon was more than a mile deep and isolated. We’d spend days without encountering other human beings. If something went sideways, getting help and getting out of there would not be easy.

Our research didn’t scare anyone off. Equipped by a local surplus store and comforted by some cautionary guide notes scribbled in a small notebook, the expedition was launched below Hell’s Canyon dam.

There’s a magical wonder in drifting down a wild river, pulled into an unknown world, with surprises around every corner. There are times of sublime peace and awe as you are carried silently past towering canyon walls, under forever blue skies  with high circling, screeching hawks, past frozen deer staring at you wide eyed. Then, you hear the whisper of something different ahead. the whisper increases to throbbing echoes and then a pulsating roar.

Rapids. the biggest, ass stomping, wildest water any of us had ever seen. Not bothering to check the small notebook for advice, our little flotilla of rafts plunged straight into the middle of the maelstrom.

We got trashed. Spun around, sandwiched, catapulted, flipped, and finally spat out at the bottom in a quiet pool. Our quickly nailed together rowing frames had been broken like toothpicks. Our two week supply of breakfast granola was now mush. Still, all had survived, but we had a new reverence for the river. 

Often, as I lay in bed waiting for sleep to carry me away, I recall the many moments of reckless abandon as I’ve floated the river of life, turning a corner and charging into another rapid of surprises without consulting the guidebook. I’m awed and grateful that having tempted fate so many times, good fortune has always smiled on me. But, there was a cost for all those thrills. I often used the allure of adventuring as an excuse to run away from commitment, avoiding the intimacy of truly loving relationships. I used adventuring as an excuse to run from my fear of love.

I’m on a different river now, floating down the canyon of deteriorating dementia with my wife. In the quiet water, things often seem normal, little changed, and it’s easy to deny that dementia is even here. But, then there are whispers, my wife will say something that makes no sense, and my mind is suddenly drowned by the rush of reality flooding my consciousness. Dementia is here and it’s not going away.

It happened today.

“Will you walk with me?” she asked.

“Sure,” I replied, “where are we going?”

“To visit my mom.”

In the process of putting on my coat, I stopped. My wife’s mom lives in Zacatecas, Mexico, 2000 miles away.

“Your mom doesn’t live here,” I shared.

“Yes, she does, right there,” my wife answered, pointing outside.

I smiled, trying to hide my disappointment that her mind had slipped again.

“Sure,” I said, helping her with her coat, “let’s walk.”

As I hold my wife close in the night’s darkness, I feel the peace and warmth that can only be found in the adventure of love.

tio stib

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Chocolate Chip Cookies

the sudden urge for sweet
flooded my mind
with cookie moment memories

the ecstasy
the ultimate delight
of warm, chocolate chip cookie
melting in my mouth

licking the spatula 
covered with cookie dough
savoring
each chewy  chocolate nugget

the crazed anticipation 
as the aroma of baking cookies 
silently owned the house

ring!
the timer bell
rushing to the kitchen
eyes wide as the oven door opens
the tray slid out revealing
rows of perfectly formed
golden brown cookies

salivating

is there anything better than a warm chocolate chip cookie
washed down with a cup of milk

sure there is, a half dozen warm chocolate chip cookies 
washed down with several cups of milk

“Don’t you dare!
Those cookies are for the bake sale.”

tio stib

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My Dementia Diary 44 – Yours to Count On

Over the years, I’ve made hundreds of acquaintances, but precious few friends. The difference between one group and the other is four words.

Yours to count on.

Those are the words inscribed in a book given to me by a man I’d spent an intimate and intense week with during a workshop in Alabama. He gave me the gift as a tribute to what we’d gone through together, including a fire walk.

I remember opening the book and seeing the words, saying them out loud,

“Yours to count on.”

I looked at him. He smiled, and shook my hand. 

I’ve never seen him since, haven’t communicated in any way. But, if I reached out to him today and asked for his help, I know he’d be there.

He was that kind of guy. he was a real friend.

Some time back, faced with a seemingly impossible situation where I was caring for a dying family member while needing to complete a construction project before a bank loan was due, I reached out to three guys who were friends.

They didn’t ask why, but jumped in a car and drove for hours to show up at my front door. they spent several days completing the project for me, shook my hand, and returned to their lives.

They were mine to count on.

There have been others. The kind souls who spent hours comforting my dying relative, giving me a break to renew my soul. 

Good human beings. 

As I stop and pause to consider the blessings of true friendship, I’m reminded that I, too, want to be someone who can say,

“Yours to count on.”

tio stib

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My Dementia Diary 43 – The Last Christmas

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

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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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For Want of Open Minds

He asked my thoughts on politics
but before my mouth could move
he stormed ahead with words of dread
drowning out the room

and on he roared, a raging flood
I chose to bide my time
for it was plain enough to hear
I couldn’t change his mind

no reasoned fact, no cautious note
no plea for honesty
was going to change this zealot’s fears
about humanity

I smiled and offered my goodbye
I scarcely think he heard
for he was talking to himself
since no one else concurred

a sad day for democracy
sad for humankind
when we fail to listen with respect
for want of open minds

tio stib,
2017, 2018

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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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