My Dementia Diary 22 – I’m Taking a Shower!

“I’m taking a shower,” she squealed with delight as my wife scampered past and into the bathroom. 

Her joy in anticipation, the sheer radiance of her being left me speechless.

I was filled with the exuberant thrill of being alive that only children can experience. I was overwhelmed by the knowing that the woman who I had married was no longer here. She would never be here again, replaced now by a beautiful child being led to bathe because she no longer remembered to do so herself.

I heard music playing in the background, John Denver singing-

“Sweet, sweet surrender, live, live without care. Like a fish in the water, like a bird in the air.” ”

I cried.

There are times when I am absolutely certain there is a power, a force of being, a love beyond understanding that binds all life in Oneness.

Namaste’

tio stib

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My Dementia Diary 16 – Good News, Bad News, Where is My Solitude

For years, I dreamed of a partner with whom I could share all of life, the joys and the hardships, someone who would be willing and able to take off on a moment’s notice to places unknown simply because it seemed to be a great idea at the time.

Finally, I was blessed with just this partner, and, for one year, we had the magic life together that I’d always dreamed of.

That was a year of unsurpassed bliss and those memories still bring me smiles. However, as so often happens, our road together took an unexpected turn. I lost my sight and she began losing her mind.

And, so, we’ve adapted.

We no longer drive miles from home, but limit our roaming to walking local walking wanderings. It has gotten to the point that I no longer feel comfortable leaving her alone, and, as I’m her only caregiver, this means we’re together all the time, always. Fortunately, my wife has a naturally cheerful disposition and she’s easily guided into whatever activity we need to be doing, from daily walks to grocery shopping. The biggest challenge is my personality, the fact that, for most of my life, I’ve enjoyed times of solitude.

While I’ve treasured sharing adventures with friends, from sailing trips to hikes to new restaurants, when no one was available, I went off on my own. And I loved it!! As has been often shared by others, solitude is not loneliness, it is the beauty and peace of being alone. I have fond recollections of such solitude times, from solo hikes and sailing trips to simply sitting on a beach at sunset. Quiet moments when I could hear stars talking to each other.

Given my wife’s new need for constant companionship, I am finding new ways to give myself the gift of solitude. As she has the envious ability to fall asleep in seconds, I often listen to those imagined stars deep into the night waiting for drowsiness to creep over my mind. Or, I’ll sit outside in the morning sunshine, letting the sweet scent of nearby Jasmine float through me, recalling other dreams of times gone by.

Solitude is soul food, and, as always, it’s up to me to feed myself.

tio stib

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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 14 – Pink Nails

 

Vietnamese. Spanish. english. Put a blind guy in the middle of this language chaos and what do you get?

Pink nails, or so I’m told.

I am realizing that my wife is less and less able to care for her personal hygiene, from remembering to take showers to brushing her teeth. She has been meticulous about such things in the past, so I’m  always surprised to discover such care is not happening. the remedy is usually a nudging, a gentle reminder, and she will spring into action, smiling. Yes, I am blessed most things are still easy.

But her nails are a different matter.

Up until now, she has done her own finger and toe nail care, cutting, filing, and painting them, an activity she has much enjoyed. However, she recently held out a hand to me and asked me to touch it. Doing so, I felt her nails and realized they were quite long, much longer than she usually kept them. It had probably been weeks since they’d been trimmed. Obviously, she wasn’t doing this herself anymore.

Off we went to the local nail salon. We walk by it often and greet the workers who sit outside lunching, all friendly and all Vietnamese. Upon entering, I explained that my wife needed a manicure and pedicure and pink was the preferred color for her nail polish. There was a response in strange words which I took as affirmative. then, I sat nearby as two young women babbled to my wife in Vietnamese and she babbled back in Spanish. I was quite content to keep my English out of the conversation, trusting my wife’s needs would be met as women seem to be able to understand each other no matter the language differences.

A short time later, she waved her hands gleefully in front of me and I, sensing they must now look beautiful, told her so, feeling good that, once more, we’ve successfully adapted to life’s continuing changes.

Yes, her nails are now likely pink, but I don’t really care, she’s happy. No, I was not tempted to have my own nails done. Blindness gives me a good excuse to avoid that. Besides, I don’t look good in pink, or so I’m told.

tio stib

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My Dementia Diary 13 – This Child Who Once Was Woman

she laughs at dancing butterflies
smiles at babies passing by
clings to me when brought to cry
this child who once was woman

her zest is sparkling innocence
a love of life without a fence
a mind released from circumstance
this child who once was woman

a singing bird
a playful word
the mirth of anything absurd
she hugs
she screams
she loves 
she beams
this child who once was woman

my heart beats glad, she is such joy
reminds me when I was a boy
of times preceding plots and ploys
this child who once was woman

the change, I was slow to see
as fog crept over memories
and here is all that she can be
this child who once was woman

now, I hold her close and dear
do my best to soften fears
not to shed a single tear
make the most while she is here
my wife who once was woman

tio stib

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My dementia diary – Beginnings

Five years ago this month, two things happened which changed the course of my life. I lost my sight and my wife began to lose her mind.

I’d already lost vision in one eye when, one day, my other eye clouded over. For the second time, a rare blood clot condition had fried my remaining healthy  optic nerve. The same week, my wife had a seizure which resulted in total amnesia. Fortunately, within twenty four hours, her memory came back, but her mental ability to reason, remember, and connect with reality began to deteriorate.

Sudden blindness left me disoriented and depressed. It was months before I was able to start on the path towards re-inventing my life with the help of folks from California’s rehabilitative services program. While  riding the emotional rollercoaster of adapting to my new world, my wife was also changing.

More and more, she was showing the signs of dementia, repeating questions many times and forgetting recent events. Over time, the dementia symptoms became more obvious. Her ability to plan and organize disappeared. Her creative activities got simpler. Where she once enjoyed abstract painting, she now spends hours with coloring books, her mind unable to deal with mixing paint colors.

She has become a child who loves life, no longer distracted by adult worries or conceptions of what life should be. I deal with practicalities, grocery shopping, money matters, scheduling. We have found a new balance, becoming a unique partnership of attitudes and abilities..

Do I miss the dreams I had for our life? All the time. I miss the adventures we had and the ones I’d hoped to share. I miss saying, “let’s go!” jumping in the car and taking off to nowhere. But, as the popular saying goes, “it is what it is.” The work now is making the most of the life  we still have.

That’s a daily challenge, one I’m going to explore in writing this journal. I invite you to join us as we walk together, blind and demented, down the road of life.

 

this child who once was woman

she laughs at dancing butterflies
smiles at babies passing by
clings to me when brought to cry
this child who once was woman

her zest is sparkling innocence
a love of life without a fence
a mind released from circumstance
this child who once was woman

a singing bird
a playful word
the mirth of anything absurd
she hugs
she screams
she loves
she beams
this child who once was woman

my heart beats glad, she is such joy
reminds me when I was a boy
of times preceding plots and ploys
this child who once was woman

the change, I was slow to see
as fog crept over memories
and here is all that she can be
this child who once was woman

now I hold her close and dear
do my best to soften fears
not to shed a single tear
make the most while she is here
my wife who once was woman

tio stib
2017

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A Thousand Clowns, a 1965 Film

“A Thousand Clowns” is a film about an eccentric, non-conformist comedy writer living in New York city. Based on a Broadway screenplay, this brilliantly written and superbly acted story is my antidote to feelings of being overwhelmed by societal pressures to fit in, especially as a writer.

Here is the YouTube link to the entire film, something for a dreary day.

A Thousand Clowns

Enjoy!

tio stib 2017