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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slack water

there is a gap between ebb and flow
the space between high and low
the moment between life and death
a pause as god’s catch their breath

the moon sighs and life sweeps in
the naked beach is lost again
hopes surge up on future’s shore
until, pulled back, they rise no more

this is our high water mark
the apex of our journeys arc
the moment when our heart will know
this is as far as we will go

summits failed, there is a slack
a moment when our soul looks back
regrets for what could have been
as waters fall away again

and skeletons of other’s lives
press into our tired eyes
exposing with advancing years
the nakedness of ancient fears

so move the tides of time
the rise and fall of humankind
and, so, each day, the moon will sigh
and pull and push
both you and I

tio stib
2017

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Finding Home

it’s a feeling
fleeting
flying off like a nervous bird
when my heart gets too close
yet memories whisper
and I wonder
what was it
that feeling
what was
home

I know I’ve felt it
the Onenes
of place
of people
of shared meals
and wild laughter
in silent awe
watching the moonrise from a porch
sliding up a far mountain
beaming shimmering light across a silent river
sparkling in enchanted eyes

I’ve felt it
in the garden
in the sweet scent of strawberries
picked by eager red fingers
wrapped in buzzing bees and flitting hummingbirds
in the joy of harvest
in the pleasure of shared
plenty

I’ve felt it
in warm murmurs around the fire
in the clink of glasses
in the evening glow of satisfaction
gained from sweating together
building a shared world

I’ve felt it
in smiles and greetings
in walking through community
in waves to passing friends
in bonds formed
by standing together
through tough times

I’ve felt it
in grief and solace
tears shared
remembering those lost
aching for those
forever gone

now I wander
the frontiers of being
soul seeking
heart hoping
to find home
again

tio stib

2016, 2017

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Tags: blind poet, blind writer, life journey, home, home again, friends, friendship, Nature

tio stib

2016, 2017

You might also enjoy: Two Rivers, A Friend Passes

Tags: blind poet, blind writer, life journey, home, home again, friends, friendship, Nature

Life in Reverse, By George Carlin

In my next life I want to live my life backwards.
You start out dead and get that out of the way.
Then you wake up in an old people’s home
feeling better every day.
You get kicked out for being too healthy,
go collect your pension,
and then when you start work,
you get a gold watch and a party on your first day.
You work 40 years
until you’re young enough to enjoy your retirement.
You party, drink alcohol, and are generally promiscuous,
then you are ready for high school.
You then go to primary school,
you become a kid,
you play.
You have no responsibilities,
you become a baby until you are born.
And then you spend your last 9 months
floating in luxurious spa-like conditions
with central heating and room service on tap,
larger quarters every day and then Voila!
You finish off as an orgasm.
I rest my case.

George Carlin, 1937-2008