Sorting through her things, my fingers find a shape I know.
a paper heart
A message from a far off place
I love you!
and there are more
she has left me a trail of hearts
with each new discovery
I hold her close
press her memory to my chest
and cry
because paper hearts are not enough
tio stib
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Suddenly
in the smothering silence of her loss
I am smashed into sobbing oblivion
by a tidal wave of grief
where once there were words of joy
sounds of love
the constant patterings of a life truly shared
there is only emptiness
a vast void
a black hole sucking my broken heart into nothingness
drowning in tears
I am swept away
by a river of silence
yet, gasping in eternal loneliness
I hear faint echoes
I love you
I love you
I love you…
tio stib
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tenderly
I placed it in her hand
the last rose
the last flower
from the summer garden of our life
she touches the petals to her lips
smiles
and they drive her away
disappear
and she’s gone
oh, how my heart aches for one more kiss
to touch her forehead to my lips
to slowly breathe in the woman
the rose that captivates my soul
but the road is empty now
I’m left alone
wandering a winter garden of memories
tio stib
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Since the day we were married, we’ve always been together, seldom more than a few feet apart, holding hands as we walked into the adventure of life.
I can’t begin to imagine being without her, but we’ve reached a point where she requires constant 24 hour care and I can no longer do this for her by myself.
As the months have drifted by and her dementia has deteriorated, I’ve struggled more and more to meet her increasing needs, particularly at night. Like many Alzheimer’s patients, night time is stressful for her. She is agitated and confused, can’t settle down to sleep, and gets up repeatedly. I arise with her, help her find and use the toilet, guide her back to bed when she attempts to leave to visit her mom, help her change clothes when she must go walking at 3 a.m., and hug her when she’s shaking with fear.
Then I guide her back to bed, tuck her in, rub her feet, kiss her, and eventually she falls asleep, until she wakes again and we repeat the cycle.
By morning light, I’m emotionally and physically exhausted. Strangely, she’s not the least bit tired, eager for our daily walk. And a new day begins. To my amazement, she greets all we encounter cheerfully, while I find myself dreaming of a good night’s sleep.
But the price for this dream scares me, for to make it happen, I must let her go, must release her to be cared for by others. This is a day I knew would come, but it’s a Christmas wish I really don’t want to happen.
tio stib
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the first time we walked together
we got lost
the perfect path
to knowing each other
she never complained
simply smiled
marveled at flowers and bird
held my hand
trusted
we’ve walked on
through mountain meadows
singing with bees and butterflies
dancing barefoot on foggy beaches
gleefully splashing in the waves
hiding under an umbrella in Spring rain
sampling strawberries at the Farmers’ Market
gossiping with passing neighbors
skipping to the grocery store
plopping onto our favorite bench
hand in hand
we walk on
tio stib
2019
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Each day, my wife and I do our dance across an emotional tightrope. the goal is to get all the way across during the day, and then all the way back during the night, all the way without falling.
These two cycles are based on the effectiveness of her day and night medications. When the little pills do their magic, the dance is relatively easy, she’s in a good mood or tired and she’s easy to lead. But, dancing on an emotional tightrope is precarious. There is little room for error. If I say the wrong words, do something that her mind takes negatively, break the routine that she’s come to expect, she is suddenly off balance, agitated, instantly filled with fear and often belligerent and aggressive.
Once this chain of behaviors begins, I can’t stop it.
We fall.
We fall and crash. There is no safety net. She becomes a person I do not know and I become a husband doing his best to stay calm and reassuring, keeping her from hurting herself, all the time beating myself up for whatever I did to trigger the pain she is going through.
We never recover quickly from these falls. Sometimes it takes thirty minutes, sometimes an hour, sometimes half the night. She slowly becomes more tranquil, quiet, peaceful. Eventually she will reach out and say she loves me.
I hold her tight and say, “I love you.!
Then we climb back onto our tightrope and start the dance again.
Growing up, I never once thought about running away to join the circus.
The circus, though, seems to have found me.
tio stib
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“Harold!” shrieked the voice across my neighbor’s yard.
‘Harold, get in here!”
I and certainly everyone else in the neighborhood now knew that Harold was being called. To my surprise, the man himself, standing on the other side of our common fence watering his flowers, did not seem to notice. In fact, there was not the slightest trace of recognition that he’d heard his summons.
Smiling, Harold said, “that corn of yours is looking mighty fine, almost ready to pick.”
I nodded in agreement.
“Never had much luck with vegetables, so I just stick with flowers,” he added, smiling with pride at his little patch of pansies.
Harold was retired, had a nice head of white hair, excepting for the bald spot which was always covered with some sort of hat, and he was blessed with an eternally pleasant personality. I never knew a mean word to escape from his mouth. I always enjoyed our over the fence chats, particularly when his wife was not nagging him.
“Harold, get in here right now!”
As he continued drowning his flowers, I realized that while anyone within a block of his house could hear the wife’s belligerent commands, Harold had tuned her out. Not a hint of displeasure, a grimace, nothing showed on his face but that benign smile. Yet his hearing was fine, as evidenced by our continued conversation.
“Fine summer day, don’t you think?” he asked.
“Harold, now!”
I think of Harold’s beatific tranquility when my wife’s pestering neediness is about to drive me nuts. I imagine myself standing beside him watering flowers with a big grin on my face.
But, I’ve yet to achieve Harold’s state of Zen peace.
A few years after his wife met her demise, Harold passed on as peacefully as he’d lived. Out driving, he had a heart attack and his car slowly slowed and stopped against a power pole. I sometimes wonder if, as Harold approached those pearly gates, he heard a familiar voice yell out-
“Harold, get in here now!”
Does God have a sense of humor?
tio stib
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I connect with other bloggers who focus on the challenges of living with dementia. Their stories and insights help me navigate the bumpy road we share. I’ve found the woman who writes “Stump Town Dementia” to be particularly honest, humorous, and helpful. She recently shared information on “death doulas,” a source of dementia caregiving assistance I’d never heard of before.
Do you know what a “death doula” is?
Here’s the link to “Stumped Town Dementia”-
https://www.stumpedtowndementia.com/post/death_doula
tio stib
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has love been worth
the silly fears of youthful years
the agony and sobbing tears
rejections, dejections, emotions tossed
plans and hopes and dreams now lost
has love been worth the unmet wants
the emptiness of sensual haunts
the births, the deaths
the final breaths
the agony of cried regrets
all this for a glimpse of bliss
the rapture of a secret kiss
a sudden smile
a soft caress
the eternity of souls confessed
and so I ask a broken heart
as time tugs our love apart
was it worth the cost
the moment’s flame?
ah, yes
sighs the sent
the sight
the memory
of a single rose
again
tio stib
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hold on
hold on while her hand
is still soft
still warm
still pulsing with
the memories of golden times
hold on
hold on to the fragments
the scant threads of hope
that somehow the disease
the unseen darkness tearing her away
will disappear
hold on
to the magic of her smile
to the joy of her laughter
to her fingers caressing my face
to the thrill of her scent in my soul
hold on
to the words she whispers in my ear
hola amor
hold her close on that seaside bench
as waves lap gently at our feet
and there is only now and us and love
forever
hear the call
a lonely train
bound for another world
hold on
it will not stop here today
tio stib
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