Husband and Wife

in the beginning
we knew not where we were going
only
that we were going together

husband and wife

how can you know what that means
when dreams are blinding
when youth is fearless
when life is forever

we skipped down the yellow brick road
not a cloud in the sky
worries past by
lost
in our bubble of love

came curves and surprises
unexpected compromises
failures and broken words
a gathering of differences

darkening days

the same choice
again and again

husband and wife?

the same answer
again and again

husband and wife

two words now one

tio stib

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My Dementia Diary 50 – Marathon Man

I’m better suited to marathons than sprints. My most satisfying successes have been the result of disciplined and persistent efforts focused on achieving goals over long periods of time. Yes, I’ll admit that such persistence has sometimes turned into close minded stubbornness that compelled me to continue with failed pursuits which should have been abandoned long before. Such lessons had to be learned.

From early on, I was never much of a sprinter, not one to jump into things for quick rewards. Part of this was certainly how I was brought up, believing success demands hard work and disciplined effort. I learned the value of patience and persistence. I also learned that success, or at least success as I’d defined it in the moment, was sometimes something I had no control over. More lessons.

Which brings me to now and my present life challenge, a blind man caring for his dementia stricken wife.

I seem to have been perfectly trained for this opportunity. My personality, my values, my previous life experiences have prepared me well. Yet, while I take some comfort in this knowledge, there is also the realization that this is a race where there will be no celebration at the finish line. 

This is a marathon which must be run one day at a time, satisfaction gained only upon reflection each night when I ask myself-

Did I love as best I could?

tio stib

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River of Time

once upon 
a nursery rhyme 
I was born
on the river of time

bouncing
splashing
over waves
with fantasies
and blue sky days

then came the sound of fear
as adulthood thundered near
some hopes were dashed 
some survived
some dreams drown
while others died

river of time
river of time
we all come together 
on the river of time

and so my life has floated on
through rapids wild
past silent songs
a new adventure every day
even as my hair turned grey

river of time
river of time
carry me home
oh river of time

tio stib

2016, 2019

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My Dementia Diary 49 – Happiness!

As my wife whistles joyfully nearby while she works on a coloring project, I wonder why I’m not similarly joyful.

Am I happy with my life? No. Am I unhappy? No. Then what am I?

Unlike my wife’s demented four year old mind, I’m many years past childhood. I can remember those happy days, but then life got complicated and so did happiness.

It seems my feelings about “happiness” have been evolving for years. Childish delight and wonder was run over by a need to accomplish things, win races, climb mountains. There was an ecstatic high when such goals were achieved. This was happiness. Of course, I often failed. Then came a life choice, is “happiness” about winning or simply doing my best? Sometimes “yes,,” sometimes “no,” depending on my mood and maturity in the moment.

Enter the paradox of people. My biggest joys have come in celebration with others. But my darkest times have also been caused by people. Another “happiness” question, do I need to get everything I want or is compromise enough? Compromise has become easier over the years. Age has mellowed my need to climb mountains.

Then I lost my sight. I realized that much of what had made me happy were things that I could see. That world disappeared and I became very depressed. It took some months, but I adapted to my much constrained life and found some satisfaction in being able to operate independently. However, I was a long, long way from “happiness” at that point.

Blindness seems to have prepared me for the next challenge, dealing with my wife’s dementia. My much smaller world fits well with her smaller life needs. Happiness for her is a walk to the water, babbling about all she sees and hears, knowing that I’m listening. Making breakfast together is a delight for her. Visiting with friends is the highpoint of her day. I’m able to make such things happen.

I take satisfaction from such service.

Am I happy? No. Unhappy? No. But, at this point in life, I am content.

Most of the time.

tio stib

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Sorely Missing Wilderness

I woke with an aching soul
a yearning to be free
away, apart, alone again
just wildness and me

humanness had left me dumb
senses dulled, spirit numb
and then I heard the ancient call
smiled
walked out
and left it all

rambling down an empty road
I crossed the last frontier
and stood once more in wilderness
and heard my heart beat

here

here

here

tio stib

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My Dementia Diary 46 – Caring for the Caregiver

I used to pride myself on my independence, my self-reliance. I’d been brought up believing that real men dealt with their own problems, asking for help was a sign of weakness. Yes, I’ve learned that such prideful small mindedness is foolish. Blindness humbled me.

Still, it’s hard to let go of old habits, such as the notion that I can be the sole caregiver for a wife whose dementia continues to deteriorate. Being blind has certainly lowered my resistance to ask for assistance. I have no qualms about asking a passerby in the grocery store if we’ve grabbed the right kind of cheese or tea. But, when we’re home alone and help is not readily available, I push myself to either find a solution to the problem at hand or just let it pass by as something that doesn’t really matter anymore. Who cares if my wife has matching socks as long as she has one on each foot?

But the daily challenges are increasing. A few weeks ago, I could count on my wife sitting at her desk and coloring happily away for an hour or more. Something has changed inside her brain and now such activity might last only fifteen minutes. The hour I used to have to let my mind get lost in creative writing has disappeared. Now, just when I’m beginning to get into a clear thought, I’m interrupted by my wife hovering over me. She wants attention. She wants to hear that her drawings are beautiful.

Of course they are.

I knew this was coming. I knew when she stopped painting and doing her own abstract designs and moved on to coloring books that her mind was slipping away. I knew that, in time, even the coloring books would be too complicated.

I knew the time would come when the demands of caring for her would overwhelm me.

That time is near.

I’ve begun seeking someone who will visit us for a few hours and help care for my wife, give her the attention she needs so that I can take a break. Someone with a big heart who  connects with my wife’s inner joy and who will free me to seek the quiet peace needed to renew my own spirit. There are no adult day care programs in our town, so I’ll need to build our own.

It is time to take care of the caregiver.

tio stib

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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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