My dementia diary – Beginnings

Five years ago this month, two things happened which changed the course of my life. I lost my sight and my wife began to lose her mind.

I’d already lost vision in one eye when, one day, my other eye clouded over. For the second time, a rare blood clot condition had fried my remaining healthy  optic nerve. The same week, my wife had a seizure which resulted in total amnesia. Fortunately, within twenty four hours, her memory came back, but her mental ability to reason, remember, and connect with reality began to deteriorate.

Sudden blindness left me disoriented and depressed. It was months before I was able to start on the path towards re-inventing my life with the help of folks from California’s rehabilitative services program. While  riding the emotional rollercoaster of adapting to my new world, my wife was also changing.

More and more, she was showing the signs of dementia, repeating questions many times and forgetting recent events. Over time, the dementia symptoms became more obvious. Her ability to plan and organize disappeared. Her creative activities got simpler. Where she once enjoyed abstract painting, she now spends hours with coloring books, her mind unable to deal with mixing paint colors.

She has become a child who loves life, no longer distracted by adult worries or conceptions of what life should be. I deal with practicalities, grocery shopping, money matters, scheduling. We have found a new balance, becoming a unique partnership of attitudes and abilities..

Do I miss the dreams I had for our life? All the time. I miss the adventures we had and the ones I’d hoped to share. I miss saying, “let’s go!” jumping in the car and taking off to nowhere. But, as the popular saying goes, “it is what it is.” The work now is making the most of the life  we still have.

That’s a daily challenge, one I’m going to explore in writing this journal. I invite you to join us as we walk together, blind and demented, down the road of life.

 

this child who once was woman

she laughs at dancing butterflies
smiles at babies passing by
clings to me when brought to cry
this child who once was woman

her zest is sparkling innocence
a love of life without a fence
a mind released from circumstance
this child who once was woman

a singing bird
a playful word
the mirth of anything absurd
she hugs
she screams
she loves
she beams
this child who once was woman

my heart beats glad, she is such joy
reminds me when I was a boy
of times preceding plots and ploys
this child who once was woman

the change, I was slow to see
as fog crept over memories
and here is all that she can be
this child who once was woman

now I hold her close and dear
do my best to soften fears
not to shed a single tear
make the most while she is here
my wife who once was woman

tio stib
2017

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A Thousand Clowns, a 1965 Film

“A Thousand Clowns” is a film about an eccentric, non-conformist comedy writer living in New York city. Based on a Broadway screenplay, this brilliantly written and superbly acted story is my antidote to feelings of being overwhelmed by societal pressures to fit in, especially as a writer.

Here is the YouTube link to the entire film, something for a dreary day.

A Thousand Clowns

Enjoy!

tio stib 2017

Love Dumb, Life Stupid

she waves and this gorgeous chick
is heading straight for me

I check my tie
pull up my fly
then gasp
aghast
as she walks by

yes, smiles are nice
but love they’re not
bartender, please
another shot

tio stib
2017

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River of Words

River of Words

my life floats down a river of words
on paragraphs, syllables, tales once heard
they call out as I drift by
love and pain, both truth and lies

emphatic “yes!”
a stolid “no.”
the overused, unhelpful “so”
“goodbye”
“forever”
“I’ll be there”
“why not?”
“you said”
“I don’t care”
“quiet, please”
“how can I think?”
“have you ever seen the sky so pink?”

the words speed up
the rapids roar
fearful sounds from times before
then I’m lost and swept away
chaos and cacophony
gulping right and spitting wrong
gasping as I’m thrown along
shouting voices, “me! me! me!”
screaming insecurity
then bashed on conflict’s argument
my heart gives out
my soul is spent

in drowning plight
I see a dove
one final thought
remember

love

the verbal roar falls far behind
consciousness comes back to mind
as grace, sweet heaven, sets me free
and quiet waters welcome me

my life floats down a river of words
heading towards a voice unheard
yet whispers on the waves call me
“you can, dear one, you can be free”

love

love

love

tio stib, 2017

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this child who once was woman

she laughs at dancing butterflies
smiles at babies passing by
clings to me when brought to cry
this child who once was woman

her zest is sparkling innocence
a love of life without a fence
a mind released from circumstance
this child who once was woman

a singing bird
a playful word
the mirth of anything absurd
she hugs
she screams
she loves
she beams
this child who once was woman

my heart beats glad, she is such joy
reminds me when I was a boy
of times preceding plots and ploys
this child who once was woman

the change, I was slow to see
as fog crept over memories
and here is all that she can be
this child who once was woman

now, I hold her close and dear
do my best to soften fears
not to shed a single tear
make the most while she is here
my wife who once was woman

tio stib

2017

Categories: life journey

Tags: love, marriage, relationships, Alzheimers, dementia, blind poet, blind writer, happiness, joy, fulfillment, blind blogger, aging, partners, life journey

Control Freaking

I live a funny fantasy
that I control how life will be
if only I pay constant mind
to details of my daily grind

I keep a list
of things to do
and push myself
to follow through
for if one thing
does not get done
I can’t pretend
I’m having fun

I do all this
to sideline stress
it seldom works
I must confess
and people?
they’re such a mess

for often, every day it seems
I find others don’t support my dreams
they ask that I give up my list
I fume
I pout,
I’m really pissed

so I sit and ponder here
do I give up this list so dear
what is it I really fear

if I stop controlling life
will this result in constant strife
if I slow to let love in
will pain clutch my heart again

the truth, of course
is sadly clear
this game that I hold so dear
simply masks
what I most fear
that love will hurt
if it gets near

tio stib, 2015, 2017

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