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
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
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.
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.
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
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
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.
Yes, dementia sucks and I wouldn’t wish it on anyone, but living with dementia has also brought blessings. The experience of being my wife’s caregiver has pushed me to be a better person, challenged my ability to love and forced me to be humble.
We have received help from family, friends, and unexpected places, good people who have stepped up when we needed assistance. In a world that often seems filled with cynicism and negativity, I have been given renewed faith in the basic goodness of human beings.
We’ve had the sweet perfume of roses and buzz of hummingbirds just outside our door.
We have a A treasure chest of wonderful memories from our life together that lights up dark days.
Although dementia is slowly taking my wife’s mind away, it has not taken her cheerfulness. Her joyful smile continues to light up my life.
I’ve never known a more perfect example of love than my wife, my Maria, she is my hero. I could not have been more blessed than to find her smiling face in front of me when I opened the front door that fateful day a dozen years ago.
It has been raining in our town, a string of wet, dark, gloomy days that make it easy to stay inside, easy to sit sipping tea wondering about life, wondering how I’ve come to be alone, how I’ve loved my wife with all my heart but that was not enough to save her from dementia.
The words of Joni Mitchell come to mind-
Tears and fears and feeling proud,
To say “I love you” right out loud
Dreams and schemes and circus crowds
I’ve looked at life that way
But now old friends they’re acting strange
They shake their heads, they say I’ve changed
Well something’s lost, but something’s gained
In living every day.
I’ve looked at life from both sides now
From win and lose and still somehow
It’s life’s illusions I recall
I really don’t know life at all
-lyrics from “Both sides Now” by Joni Mitchell, 1968
It has been weeks since our daughter has taken my wife to live with her. Weeks of sorrow, tears, and loneliness, but also time to rest, to heal, to wonder.
Did I do my best to care for my wife?
What about all those explosions, those moments of frustration?
Yes, I slipped and fell many times, but I got back up, I learned to be more patient and understanding with her and with myself.
I’ve learned that love is not perfect. We do our best to be loving, to care for those dear to us, but sometimes actions don’t measure up to intentions.
Sometimes we fail to be as loving as we want to be. I certainly did. Yet, on a journey such as caregiving for a loved one with dementia, such failures must be forgiven because most of us have never had to care for someone whose mind is being eaten away by dementia even though their body seems to be unaffected.
This has been my biggest challenge. I’d be walking with my wife, holding her hand, hearing her whistling in delight at passing birds, and think to myself, what could possibly be wrong.
And then she’d ask me if we could go visit her mom while we were out walking, the mom who lives two thousand miles away.
She’s here but she’s not.
And the part of her who isn’t here will never be back again.
It seems there are some things we will never understand. I don’t understand dementia and why it had to take my wife away.
But, I do know I love her dearly and all I can do is care for her as best I can.
