Hand in Hand

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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My Dementia Diary 88 – Our Tightrope

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

You might also enjoy: This Child Who Once Was Woman; My Dementia Diary

 

 

My Dementia Diary 87 – Harold!

“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

You might also enjoy: A One Act Play, My Dementia Diary

 

My Dementia Diary 86 – Stumped Town Dementia and Death Doulas

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

You might also enjoy: My Dementia Diary 75 – Sleepless in Benicia, My Dementia Diary

 

 

The Memory of a Single Rose

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

20100531 Roses from Laura 002

tio stib

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My Dementia Diary 83 – Hold On

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

You might also enjoy: Morning Bliss, My Dementia Diary

My Dementia Diary 82 – Islands of Loneliness

In the 2000 film “Cast Away,” Tom Hanks stars as the survivor of a plane crash who finds himself alone on a deserted island. in the Pacific Ocean. After weeks of working to physically survive, he then faces the deeper  challenges of human existence, loneliness, hope, and faith.

To deal with his isolation, he begins a relationship with a volleyball, which he names Wilson and thereafter discusses everything going on in his mind with this unspeaking acquaintance. His hope is bolstered by a picture of the girlfriend he dreams of marrying. His faith in his ability to adapt and solve life’s problems wanes in time and, giving up, he tries to kill himself. Fate steps in, he fails, then recommits to finding a way off the island.

Yes, he escapes, but the ending isn’t what you’d call “Hollywood Happy.”

How do my wife and I compare to Hanks and his cast away life?

Certainly, we are cast aways too, a couple living with a disease that nobody around us wants to talk about.

Dementia. It’s difficult, it’s depressing, it’s death.

Even though we’re surrounded by a sea of other souls, none of them want to stop chasing their own dreams to visit our little island. True, I was one of them once.

So, like Hanks, we, mostly me, adapt. For now, I’m better off than Tom, who only had a volleyball to talk to. My wife can still smile, hug, and babble back at me. Also, the diet on our island, with occasional burritos and ice cream bars, is much better than Hanks menu of crunchy roasted crabs. 

However, like millions of other caregivers and their dementia stricken loved ones, we won’t be escaping our island of loneliness to return to the wonders of a world left behind.

No “Hollywood Happy” endings here. But I’m keeping the faith that there will be moments of beauty, grace, and love.

That’s the best I can do.

tio stib

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