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 47 – Whistling

It’s a good day when my wife is whistling.  Whistling means she’s happy, focused on coloring, and I have time to write.

I’ve learned to play music with words and melodies that spark her mind into activity. One fascinating aspect of her dementia, often reported by others, is that she remembers tunes from years back, but not a word of what I said five minutes ago. Besides her marvelous musical memory, she also demonstrates a talent for mimicry.

When birds sing out on our daily walks, she sings back, chirping and whistling whatever she hears. Although there has yet to be an answer to her calls, she doesn’t stop trying.

I’m fortunate that my wife’s mind still allows her to find delight in life. I’ve been around others with dementia whose confusion and anger made it difficult to care for them. I’ve learned there are buttons I don’t push with her because they will lead to a death spiral of emotions that is difficult to recover from. When such situations happen, as they inevitably do, I tell myself to remember that I’m dealing with a beautiful child who only wants to love and be loved.

And I play music that gets her whistling.

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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