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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My Dementia Diary 48 – Both Sides, Now

It has been raining in our town, a string of wet, dark, gloomy days that make it easy to stay inside, sit in the easy chair beside my wife as she colors happily, relax, and listen to life happening  around me.

Lost in this oblivion, I heard my mind say, “pay attention-

a familiar song was playing on the radio. It was Joni Mitchell singing “Both Sides, Now.”

Both Sides, Now

Rows and flows of angel hair
And ice cream castles in the air
And feather canyons everywhere
I’ve looked at clouds that way
But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way

I’ve looked at clouds from both sides now
From up and down and still somehow
It’s cloud’s illusions I recall
I really don’t know clouds at all

Moons and Junes and ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I’ve looked at love that way
But now it’s just another show
You leave ’em laughing when you go
And if you care, don’t let them know
Don’t give yourself away

I’ve looked at love from both sides now
From give and take and still somehow

It’s love’s illusions I recall
I really don’t know love at all

Tears and fears and feeling proud,
To say “I love you” right out loud
Dreams and schemes and circus crowds
I’ve looked at life that way
But now old friends they’re acting strange
They shake their heads, they say I’ve changed
Well something’s lost, but something’s gained
In living every day.

I’ve looked at life from both sides now
From win and lose and still somehow
It’s life’s illusions I recall
I really don’t know life at all

Joni Mitchell, 1968

These words pulled me into a cosmic pinball game, emotions flashing, as my heart bounced up, down, and around through forgotten memories. Yes, I’d heard this song before, but not the way, years later,  I heard it now. 

I was left with two thoughts-

Joni Mitchell is a heckuva songwriter and musician.

I really don’t know love or life at all.

Both Sides, Now

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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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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