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

You might also enjoy: My Dementia Diary 45 – A Different River, My Dementia Diary

 

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

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My Dementia Diary 53 – The Walk to Paradise Garden

In 1946, W. Eugene Smith, a photo journalist who had been severely wounded in the latter days of World War II, was recovering at home, depressed and wondering if he’d ever pick up a camera again. On a quiet Spring day, he noticed his two young children, Pat and Juanita, walking outside in the garden. He followed them and the photo he took has comforted and inspired millions, including me.

I can no longer see this picture, but it is vividly etched in my memory, an image I often recall as my wife and I walk, hand in hand, discovering the delights of our small town world.

The Walk to Paradise Garden.jpg

“The Walk to Paradise Garden,” copyright W. Eugene Smith, Time/Life, Getty Images

tio stib

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My Dementia Diary 52 – Drowning in Sadness

Because my wife’s dementia is deteriorating slowly, there are times when I forget it is happening at all. then, she says something-

“Do you have a wife?”

We were making breakfast when this question came up. My heart froze.

“Do you have a wife” she asked again.

I hugged her close and whispered, “you are my wife. You will always be my wife.”

“Of course,” she answered, kissing my cheek.

I am drowning in sadness.

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 51 – Visiting Mom

She wants to walk over and visit mom. The problem is that my wife’s mind no longer realizes that mom is 2000 miles away in another town, another country.

No need to try and explain this, her mind does not comprehend rational logic. Once more, I’m challenged to adapt to the current reality. 

“Would you like to talk with her?” I ask my wife.

If the answer is affirmative, I dial up mom on the phone and the ensuing conversation seems to resolve the need to connect. However, if we’ve already called mom three times in the last few hours, saving money and mom’s sanity requires another option.

“Sure, let’s walk over to Mom’s,” I’ll suggest.

So we bundle up and go outside and by the time we get to the street, my wife’s mind has moved on and we’re talking about birds, or neighbor kids, or new blossoms on the peach tree.

I find that I enjoy our life together much more when I’m open to it being a continuing adventure of challenges and surprises.

tio stib

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