My Dementia Diary, a blind caregiver’s journey with his wife and her dementia

In January 2013, Tio Stib lost his sight and his wife began losing her mind. He was blind and she was diagnosed with  Alzheimer’s disease. Suddenly, the adventurous life they’d enjoyed became a dramatically different journey. Mostly as a way to cope, Tio began to blog, using prose and poetry to describe their altered path in life. His blog posts evolved into this book.

“My Dementia Diary” is Tio’s recounting of the seven year journey that followed, a story sometimes humorous, often poignant, and always intimate, the story of how a blind man became the sole caregiver for his wife with her deteriorating dementia.

This is a story about adapting to adversity, about the devastating impact of dementia, about marriage, commitment, and faith.

Above all, “My Dementia Diary” is a story about the power of love.

My Dementia Diary Final cover copy

The book will be available as part of a GoodReads Giveaway until April 11. Here’s the link- GoodReads Giveaway until April 11

The ebook is available on Amazon KDP

Apple Books

A note from the author-

No way, I thought, this can’t be happening to us. Like millions of others facing the news that a loved one has dementia, I denied it. But my wife’s dementia was painfully real and I felt utterly helpless and alone.

I was saved by love. I was saved by the boundless kindness of good people who cared for us in our times of need and by the unwavering joy for life my wife shared even as her mind faded away.

My hope is our story will bring similar solace to you.

Without

there is no happy
without sad
there is no good
without bad

there is no high
without low
there is no stop
without go

there is no wrong
without right
there is no dark
without light

there is no courage
without fear
there is no far
without near

there are no tears
without smiles
there is no distance
without miles

there is no quiet
without din
there is no out
without in

there is no wild
without tame
there is no different
without same

there is no peace
without strife
such are the facts
of daily life

and from these truths
I choose my fate

I will be love
and without hate

tio stib

2015, 2020

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Insomnia

there are bedtimes when 
I dream in peace
a mind released to roam
then others when 
the clock grinds on
in purgatory’s womb
I lay now in eternal night
counting endless sheep
hoping this will somehow lead
to mindless, blissful sleep

tio stib

2015, 2018, 2020

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What Should I Do With My Life?

Today’s weather in Tio’s mind: Partly cloudy, warming

After weeks of sobbing  storms overwhelming me as I’ve grieved for the loss of my wife to dementia, today dawned with glimpses of bright sunshine. I heard birds singing and smelled flowers and blossoms, hints of Spring creeping into my small town world.,

I can feel a new season coming, new life beginning again, but what does this mean for me, what now without the woman with whom I spent all day, every day, all the time for the past ten years? Standing stunned on the edge of a chasm of lonely emptiness, I am left wondering-

What should I do with my life?

Being both introspective and introverted, I let this question bounce around my brain like a ball tumbling through a cosmic pinball machine. Over and over, the resulting answer is the same-

TILT!

Obviously, this mental masochism is going nowhere, so it’s time to just move on, seek out the signs that have guided me to a meaningful life in the past-respect.

Courage. Compassion, Integrity. Gratitude, Simplicity. Fellowship. Nature. Frontiers. Wilderness. Service.

I trust that following the path with heart, I will be guided to the right people, the right places, the right purpose.

I pay attention, I live my truth fearlessly, I expect the best, and-

I GO FOR IT!

tio stib

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Walking With My Lover’s Ghost

walk with me
I hear her softly plead
come
walk with me

and so I rise and go
take the hand that isn’t there
feel the joy in her smile
the smile only my heart can see
hear the memory of her gleeful calls
her waves to passing children
as she scampers to greet them

hugging close
faces glowing in the morning sun
a gentle breeze caresses us
sitting on our seaside bench

I kiss her tenderly
taste the love upon her lips
inhale the sweet scent of her soul
embrace the grace that made us one
blessed us

touching the emptiness beside me
tears slide down my cheeks

come
I plead
walk with me

and I rise again
move on

walking with my lover’s ghost

 

tio stib

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Invictus

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.

BY WILLIAM ERNEST HENLEY, 1875

One of two poems I turn to for inspiration, (the other is “If” by Rudyard Kipling)

Here’s a link to a powerful reading by Morgan Freeman from the movie “Invictus”, in which he plays Nelson Mandela.

 

You Will Always Be My Valentine

as I walk the mourning streets alone
holding the hand that isn’t there
her memory calls to me

my love teacher

smile!
life is a precious gift
delight in the wonder of each new day
embrace the sun’s warm touch
dance with moon shadows
drown yourself in the pleasures of flowers
play with children
laugh with babies

love

love

simply love

maria y steve in sand copy.jpg

you will always be my valentine

 

tio stib

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