Tag Archives: dementia

Unknown's avatar

The True measure of Love

by

I’ve returned from visiting my daughter who has been lovingly caring for her mother, my wife, for many, many months now. It was a visit I had to make but knew it would be difficult.

My wife has severe dementia, severe to the point that there is no conscious control remaining in her body. All movements, what few there are, are reflexive responses. Her eyes blink but do not see, her throat swallows but mouth does not chew, her lungs breathe but there are no sounds except for occasional grunts, her hands are warm but do not move.

She must be spoon fed three times daily for sustenance. Her limbs must be manually moved for the exercise needed to keep them flexible. The only thing keeping my wife alive is our daughter’s complete devotion to her mother’s loving care.

I have never heard my daughter complain, never heard a single negative word from her mouth in all the time she has been caring for her mother.

Not a single word.

rather, she greets her mother each day with love and encouragement. Every single day. Every single moment.

My daughter humbles me. She has shown me the true measure of love.

She is a saint, as is her mother whose devoted love for me was never ending.

I am blessed to live in such company.

tio stib

 

Unknown's avatar

little deaths

by 

at first you think
that’s strange
she must be distracted

the repeated question
the forgotten moment
it’s just not her

but things keep happening
shoes on wrong feet
pants on backwards
toilet paper wadded up in drawers
she can’t count to ten
she wants to walk over to mom’s house
but mom lives in a another country

the oddities keep coming
until
now
after days
weeks
months
of little deaths

she sits
vacant
wordless

gone


tio stib

Unknown's avatar

My Dementia Diary 71 – What We Might Have Been

by

in the black, eternal night
I wonder what might have been

had fate not gulped us whole

what roads would have called us on
what waves swept us off to other lands
what mountains would have echoed with our joy
what babies cooed, what friends cajoled
what rainbows would have blessed our dreams

had fate not gulped us whole

and yet
as I hold her hand so soft and still
I know the peace
of a life lived
however briefly

together

tio stib

Unknown's avatar

Walking With My Lover’s Ghost

by

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

You might also appreciate: You Will Always Be My Valentine; My Dementia Diary

Unknown's avatar

Giving Back

by 
she never questioned
never paused
simply poured her endless love

into my life

now she sits
without her mind

and I give back


tio stib

You might also enjoy: My Dementia Diary; Symphony vs. Stanza
Unknown's avatar

My Dementia Diary 60 – Her Smile

by

I’ve not seen it for years
but I hear it, feel it
fluttering its butterfly wings in my soul
flitting through the garden of life’s memories
flying through my dreams

her smile

what would life be
without the heartbeat of love
without this boundless joy
this radiant light
that melts the clouds of doubt
the storms of despair

away

away

her smile

how can something
so long unseen
still fill my heart with hope

I am blinded by the bliss of love

 

tio stib

You might also enjoy: My Dementia Diary 13 – This Child Who Once Was Woman, My Dementia Diary

 

Unknown's avatar

and I smiled

by

holding the year’s last rose in her hand
she disappeared
whisked away on the first day of winter
gone forever on a cold December day

my head said it was for the best
said I could not give the care she needed
said I had to let her go

my heart said

NO!

I made tea
cleaned up
pretended I was strong
wondered why I could not hear her near me
why I felt so empty and alone

and I cried
cried hugging all the memories
cried as I walked with her
danced with her
cried sitting with her on the seaside bench
our faces kissed by the morning breeze
cried hearing her sing out to passing children
cried as I touched her sleeping softness
cried every day through the longest winter of my life
cried far into sunnier seasons

this morning, when I opened my eyes
I thought of her once more

and I smiled

tio stib

You might also appreciate: You Will Always Be My Valentine; My Dementia Diary

 

Unknown's avatar

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

by

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.

Unknown's avatar

My Dementia Diary 103 – Besame Mucho

by

We have a favorite song, “Besame Mucho,” by the Mexican artist Consuelo Velasquez. Whenever we hear Andrea Bocelli singing “Besame Mucho” on the radio, we stop whatever we’re doing to dance together, reminded of how blessed we are to have found each other.

Even now, as I hear Andrea Bocelli singing “Besame Mucho,” I hold her tight and dance with the memory of our love-

Besame, Besame mucho
Como si fuera ésta noche
La última vez

Besame, besame mucho
Que tengo miedo a perderte
Perderte después

Besame,
Besame mucho
Como si fuera ésta noche
La última vez

Besame, besame mucho
Que tengo miedo a perderte
Perderte después

Quiero tenerte muy cerca
Mirarme en tus ojos
Verte junto a mi
Piensa que tal vez mañana
Yo ya estaré lejos,
Muy lejos de ti

Besame, Besame mucho
Como si fuera ésta noche
La ultima vez

lyrics from “Besame Mucho” by Consuelo Velasques

Kiss Me A Lot (English translation)

Kiss me, Kiss me a lot
as if this night were
the last time

kiss me, kiss me a lot
that I’m afraid to lose you
lose you afterwards

kiss me, kiss me a lot
as if this night were
the last time

Kiss me, Kiss me a lot
that I’m afraid to lose you
lose you afterwards

I want to have you very close to me
To see myself in your eyes
to see you next to me
think that perhaps tomorrow
I will be far away
far away from you

kiss me, kiss me a lot
as if this night were
the last time

beseme mucho copy.jpg

Besame mucho!

tio stib

You might also appreciate: Both Sides Now; My Dementia Diary

 

Unknown's avatar

My Dementia Diary 102 – The Final Chapters

by

Talking with her as she cheerfully ate breakfast, I realized that she didn’t know me, didn’t remember that we are married, that I’m her husband.

The woman I married is gone. In her place, a beautiful child whose mind slips further and further into oblivion each day. All we can do is make these days as comfortable and happy as possible. In time, she will need help with the simplest of tasks, bathing, feeding herself. She will be more and more disconnected from reality, from us, from me.

Those final chapters will be a very difficult journey.

I’m going to stop writing here. Other family have taken over my wife’s care and my role has changed from sole caregiver to caregiver support. We all know what’s coming but we’ll do our best to make each remaining day in my wife’s life joyful.

I suspect few of us consider how our lives or the lives of our loved ones will end. I certainly avoided the subject until dementia shoved death in front of my face.

Yes, this has been a painful journey, but it’s a journey I’ve been able to share with my wife, with family, with other loved ones, a journey that, although anguishing at times, has also been rich with the deep intimacy gained by sharing life’s ultimate challenge.

Namaste’

tio stib

You might also appreciate: Her Smile; My Dementia Diary