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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hibernation

an eye opens
grey
no bright light
no sunshine
a dark, gray, day

deep in the cozy comfort of warm blankets
I snuggle

the mind stirs
no “to do” list
no appointments to miss

the eye closes
I choose hibernation

again

tio stib
2018

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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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