My Dementia Diary 63 – Awkwardness

On our daily walks, she greets everyone with a smile and “good morning!” She is even more exuberant with children and babies in strollers, stooping to wave at them and babble excitedly in a combination of Spanish, English, and otherwise unintelligible, but happy,  sounds. 

The response is mixed. Most return the exuberant greetings, but some respond with silence. I can hear their minds whirring.

“Who is this crazy woman?”

I’m sure the awkwardness is not helped by my presence nearby, a blind guy poking about with a white cane.

Although most kids are understandably shy when confronted by strangers, my wife’s wholehearted delight in meting them usually melts their fears away and she often ends up slapping hands with  high fives before we go our separate ways.

And I’m reminded to let go any fears of embarrassment and simply enjoy life in the company of an angel.

tio stib

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My Dementia Diary 55 – Socially Starving

I’m with my wife 24/7, all day, every day, all the time. I never paid any attention to our relationship reality when her mind was healthy and I could see. Being together was a constant treat, always new adventures to share, things to do together. 

And, we could talk, share ideas, questions, and breathe together in awe at a stunning sunset.

As much as we enjoyed each other, we were always organizing get-togethers with family and friends. We could drive, so making connections was easy. We were both functional, making shared meals with others  a simple thing to do at our place.

For a short time, our life was a wonderful balance of precious times together and special moments with others.

Such times are past. Our range of life options has collapsed. My wife’s dementia and my blindness have shrunk our social activities significantly. We no longer drive, so getting out to visit folks beyond our walking radius doesn’t happens unless someone comes for us. This occurs less and less, as I suppose, for most, that socializing with a demented woman and a blind guy is, at best, awkward.

Fortunately, my wife enjoys video calls with our kids, which they are considerate enough to make often. But, as any sort of intellectual, rational conversation is no longer possible with my wife, I find myself craving social contact.

Even though we rarely meet anyone at our local coffeehouse, we visit regularly just so I can hear the drone of other human voices, be near conversations, get vicarious pleasure from being in the middle of people living regular lives.

Slowly, I’m socially starving.

tio stib

You might also enjoy: My Dementia Diary 45 – A Different River, My Dementia Diary

 

Weeding Words

what makes a word a weed?

makes me suddenly
yank it out
toss it from my poetic garden

I must admit it’s never logic
nothing rational
just pure and perfect whim

it sounds odd
it looks strange
it simply doesn’t fit
it’s a weed
goodbye

and so, to fill the gaping hole
I plant another seed
and watch new life erupt

listen
to how it gabs with neighbors

hope
that this communion of sound and sight and meaning
will sate the artist’s appetite for perfectio

tio stib

You might also enjoy: My Garden of Words, Life Journey Poems & Prose

Jumping Off

leaning out the open door
time roars by
it’s gone
no more
I wonder what my life might be
had I the courage to jump free

behind me in the train’s cocoon
dreams fly off to distant moons
faces glued to heartless screens
joyless stares and silent screams

and so we travel every day
secure and safe or so we say
the child no longer comes to play
the status quo will have its way

will I stay an untold story
remain in hopeless purgatory
pretending that I care no more
soul crying for its need to soar

then I jumped off into space
the unknown flying in my face
It’s not clear where I will land
no matter
I am free again

tio stib

2016, 2017, 2019

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My Dementia Diary 54 – Losing It

Last night, I lost it. Blew up. Exploded. Screamed.

It was a singular outburst of dramatic proportion, much more than the trivial event which triggered it, tripping on a misplaced shoe. One emphatic yell and it was over, but that was just the beginning.

My wife, who I know is emotionally fragile, takes any evidence that I’m displeased or simply not happy as an indication that I’m upset with her. My scream unleashed a storm of tears. Once started, there is no rational way to calm her down, it’s a matter of patiently waiting for her mind to reset. She’ll bounce angrily around our place, slamming doors, muttering to herself, and then, suddenly, she’ll come back, hug me, and ask me if I love her.

Of course I do, but I feel terrible that my outburst has so upset her.

I make every effort to avoid such venting, knowing the inevitable consequences. She is love on two feet, not capable of any thought but love for me, for anyone. It is impossible to be angry with her. But sometimes I get angry with being blind.

Then I’m angry with myself for causing her pain and vow to never do it again. 

But sometimes I just loose it.

tio stib

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Hand in Hand

the first time we walked together
we got lost
the perfect path
to knowing each other

she never complained
simply smiled
marveled at flowers and bird
held my hand

trusted

we’ve walked on
through mountain meadows
singing with bees and butterflies
dancing barefoot on foggy beaches
gleefully splashing in the waves
hiding under an umbrella in Spring rain
sampling strawberries at the Farmers’ Market
gossiping with passing neighbors
skipping to the grocery store
plopping onto our favorite bench

hand in hand

we walk on

 

tio stib

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My Dementia Diary 52 – Drowning in Sadness

Because my wife’s dementia is deteriorating slowly, there are times when I forget it is happening at all. then, she says something-

“Do you have a wife?”

We were making breakfast when this question came up. My heart froze.

“Do you have a wife” she asked again.

I hugged her close and whispered, “you are my wife. You will always be my wife.”

“Of course,” she answered, kissing my cheek.

I am drowning in sadness.

tio stib

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