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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My Dementia Diary 47 – Whistling

It’s a good day when my wife is whistling.  Whistling means she’s happy, focused on coloring, and I have time to write.

I’ve learned to play music with words and melodies that spark her mind into activity. One fascinating aspect of her dementia, often reported by others, is that she remembers tunes from years back, but not a word of what I said five minutes ago. Besides her marvelous musical memory, she also demonstrates a talent for mimicry.

When birds sing out on our daily walks, she sings back, chirping and whistling whatever she hears. Although there has yet to be an answer to her calls, she doesn’t stop trying.

I’m fortunate that my wife’s mind still allows her to find delight in life. I’ve been around others with dementia whose confusion and anger made it difficult to care for them. I’ve learned there are buttons I don’t push with her because they will lead to a death spiral of emotions that is difficult to recover from. When such situations happen, as they inevitably do, I tell myself to remember that I’m dealing with a beautiful child who only wants to love and be loved.

And I play music that gets her whistling.

tio stib

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My Dementia Diary 46 – Caring for the Caregiver

I used to pride myself on my independence, my self-reliance. I’d been brought up believing that real men dealt with their own problems, asking for help was a sign of weakness. Yes, I’ve learned that such prideful small mindedness is foolish. Blindness humbled me.

Still, it’s hard to let go of old habits, such as the notion that I can be the sole caregiver for a wife whose dementia continues to deteriorate. Being blind has certainly lowered my resistance to ask for assistance. I have no qualms about asking a passerby in the grocery store if we’ve grabbed the right kind of cheese or tea. But, when we’re home alone and help is not readily available, I push myself to either find a solution to the problem at hand or just let it pass by as something that doesn’t really matter anymore. Who cares if my wife has matching socks as long as she has one on each foot?

But the daily challenges are increasing. A few weeks ago, I could count on my wife sitting at her desk and coloring happily away for an hour or more. Something has changed inside her brain and now such activity might last only fifteen minutes. The hour I used to have to let my mind get lost in creative writing has disappeared. Now, just when I’m beginning to get into a clear thought, I’m interrupted by my wife hovering over me. She wants attention. She wants to hear that her drawings are beautiful.

Of course they are.

I knew this was coming. I knew when she stopped painting and doing her own abstract designs and moved on to coloring books that her mind was slipping away. I knew that, in time, even the coloring books would be too complicated.

I knew the time would come when the demands of caring for her would overwhelm me.

That time is near.

I’ve begun seeking someone who will visit us for a few hours and help care for my wife, give her the attention she needs so that I can take a break. Someone with a big heart who  connects with my wife’s inner joy and who will free me to seek the quiet peace needed to renew my own spirit. There are no adult day care programs in our town, so I’ll need to build our own.

It is time to take care of the caregiver.

tio stib

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