My Dementia Diary 64 – Holding Hands

we have reached a place
where holding hands
is a pleasure
beyond orgasm

we have become
an incalculable oneness

after miles
years
of laughing, loving, sharing
a life together
I reach
expect
her soft, strong, tender fingers
to entwine with mine

my heart banishes all thoughts
that one day her hand
will not be there

tio stib

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My Dementia Diary 61 – Back to Beginnings

I’ve been loved before, been involved intimately with other women, women with good hearts who cared for me. But I couldn’t let them in. Immaturity, insecurity, ego, fear, the stress of too much or too little work, etc., etc., excuses.

Or, to put it bluntly, it took me along time to grow up.

Yes, there were the other extremes, the women I did open up to, loved big, but still we failed. They were on their own journeys and our souls could not balance on the scales of love.

And so went my life lessons in loving, from ecstasy to despair, until I finally met her, my wife. Perhaps it was love at first sight, but it took time to melt through the layers of fear we’d accumulated to protect our hearts from pain.

Or, to put it simply, we grew back to being the children of love we are

Now, each day is a new beginning.

tio stib

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My Dementia Diary 57 – Healthy & Happy

 

I was once obsessed with lists. I would rise long before the sun to be at work by 5:30 a.m.. Fueled by a cup of hot chocolate, I’d dive into my “things to do,” twenty was not a daunting number, before the rest of the office arrived at 7”30. Focused and disciplined, I checked off my cumulative responsibilities one by one.

I admit to a supreme sense of satisfaction on those days when I managed to complete these tasks before the “good mornings!” of fellow workers turned the rest of the day into chaos.

Was I really so wrapped up in being dutifully responsible that I sacrificed having any sort of other life?

Seems so. I do remember moments during that time when I dreamed of sleeping in, fantasized about a day with nothing to do, no budgets to balance, no employees to guide, no monthly reports to issue. 

As the wise man said, “careful what you wish for.”

My career path has veered from architect to caregiver. There are no staff to manage, no urgent tasks to accomplish, no reason at all to get up at 5:30 in the morning.

Except when my wife needs help finding the bathroom

the multiple item “to do” list has disappeared. The day has been reduced to two priorities-

Healthy and happy.

that’s my daily work, keep my wife healthy and happy.

Has a delightfully simple  ring to it, don’t you think?

tio stib

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My Dementia Diary 55 – Socially Starving

I’m with my wife 24/7, all day, every day, all the time. I never paid any attention to our relationship reality when her mind was healthy and I could see. Being together was a constant treat, always new adventures to share, things to do together. 

And, we could talk, share ideas, questions, and breathe together in awe at a stunning sunset.

As much as we enjoyed each other, we were always organizing get-togethers with family and friends. We could drive, so making connections was easy. We were both functional, making shared meals with others  a simple thing to do at our place.

For a short time, our life was a wonderful balance of precious times together and special moments with others.

Such times are past. Our range of life options has collapsed. My wife’s dementia and my blindness have shrunk our social activities significantly. We no longer drive, so getting out to visit folks beyond our walking radius doesn’t happens unless someone comes for us. This occurs less and less, as I suppose, for most, that socializing with a demented woman and a blind guy is, at best, awkward.

Fortunately, my wife enjoys video calls with our kids, which they are considerate enough to make often. But, as any sort of intellectual, rational conversation is no longer possible with my wife, I find myself craving social contact.

Even though we rarely meet anyone at our local coffeehouse, we visit regularly just so I can hear the drone of other human voices, be near conversations, get vicarious pleasure from being in the middle of people living regular lives.

Slowly, I’m socially starving.

tio stib

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Husband and Wife

in the beginning
we knew not where we were going
only
that we were going together

husband and wife

how can you know what that means
when dreams are blinding
when youth is fearless
when life is forever

we skipped down the yellow brick road
not a cloud in the sky
worries past by
lost
in our bubble of love

came curves and surprises
unexpected compromises
failures and broken words
a gathering of differences

darkening days

the same choice
again and again

husband and wife?

the same answer
again and again

husband and wife

two words now one

tio stib

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My Dementia Diary 41 – Reality Check

We seldom notice the small changes in those close to us, but over time, these changes add up. Suddenly, we are aware of differences. Our children have grown up. Our parents have grown old.

My wife’s dementia has deteriorated.

She is more confused, no longer remembering where our children live, forgetting names and places. She is more fearful, often upset by imaginary ghosts. She needs more help with daily functions, getting dressed, brushing teeth, taking a shower. She cannot be left alone, this causes her extreme anxiety. Her spoken words are often unintelligible, gibberish.

That said, there’s another side to this story. She is still filled with love and joy, greeting all we meet with a smile and “thank you, very good day!” She still loves to color, spending afternoons with crayons and coloring designs as she whistles happily. She is easily directed, no arguments about the right jacket to wear, going shopping, visiting friends, or what I’m serving for dinner.

It has been five years now since I became aware of my wife’s dementia. the mental deterioration process has been slow but all the little losses have added up. She now requires twenty four hour care, although much of the time little direct supervision is necessary. She is more confused and fragile, requiring my careful consideration in in response to her emotional needs.

Still, she is healthy and active, we enjoy our daily walks through town, visits to restaurants, phone conversations with family. But this will change, the disease will further consume her brain, there will come a time where meeting her needs will be more than I can do alone.

For now, I continue to do what we love with the woman I love for as long as we can.

tio stib

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My Dementia Diary 40 – When “No!” Means “Yes!”

“Do you want to take a shower?” I asked her.

“No!”

I asked again, “do you want to take a Shower?”

“No!”

I took off my clothes, then asked one more time, “do you want to take a shower?”

“No!”

Okay, fine, I thought, I’m taking a shower by myself. I was tired, not feeling well, and the thought of soaking under a stream of hot water was delicious. I needed it. I’d asked my wife three times if she’d wanted to join me because recently I’ve had to shower with her to ensure she was washed thoroughly. She enjoys this.

But, she said, “no!”

I lost myself in the showers warm deluge, letting fatigue and aches melt away. Eventually, I turned off the water, dried myself and put on pajamas, then approached my wife, who was lying in bed.

“You don’t love me,” she said defiantly, “why didn’t you shower with me?”

Obviously, I’d made a mistake, something I often do when tired.

Obviously, her previous “no!” meant “yes!”

I’d forgotten that she is now so attached to me that she expects we will do everything together. If we don’t, something is wrong.

It took a lot  of soothing talk and caresses before her anger dissolved and her usual loving self returned. I’ve learned that these situations simply require patience and eventually harmony is restored.

Later, as she slept soundly beside me, I pondered how easy it is to do everything right and still have things go wrong.

Dementia is not a rational disease.

tio stib

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