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

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

My Dementia Diary 45 – A Different River

In younger years, I was drawn to reckless adventuring. Climbing mountains, sailing oceans, rafting wild rivers, anything that took me to the edge and, often, beyond. One such trip was a float down the Snake River through the Hell’s canyon wilderness. this was a journey into the unknown long before outfitters offered guided versions complete with 5 star dinners.

There were a dozen of us, friends and acquaintances, guys lured by the appeal of an adrenalin packed escapade. None of us had done anything like this before, so we scouted the local bars for advice. One drunk curmudgeon said we’d all be killed, another offered we could do the trip on inner tubes. One thing was certain, Hell’s Canyon was more than a mile deep and isolated. We’d spend days without encountering other human beings. If something went sideways, getting help and getting out of there would not be easy.

Our research didn’t scare anyone off. Equipped by a local surplus store and comforted by some cautionary guide notes scribbled in a small notebook, the expedition was launched below Hell’s Canyon dam.

There’s a magical wonder in drifting down a wild river, pulled into an unknown world, with surprises around every corner. There are times of sublime peace and awe as you are carried silently past towering canyon walls, under forever blue skies  with high circling, screeching hawks, past frozen deer staring at you wide eyed. Then, you hear the whisper of something different ahead. the whisper increases to throbbing echoes and then a pulsating roar.

Rapids. the biggest, ass stomping, wildest water any of us had ever seen. Not bothering to check the small notebook for advice, our little flotilla of rafts plunged straight into the middle of the maelstrom.

We got trashed. Spun around, sandwiched, catapulted, flipped, and finally spat out at the bottom in a quiet pool. Our quickly nailed together rowing frames had been broken like toothpicks. Our two week supply of breakfast granola was now mush. Still, all had survived, but we had a new reverence for the river. 

Often, as I lay in bed waiting for sleep to carry me away, I recall the many moments of reckless abandon as I’ve floated the river of life, turning a corner and charging into another rapid of surprises without consulting the guidebook. I’m awed and grateful that having tempted fate so many times, good fortune has always smiled on me. But, there was a cost for all those thrills. I often used the allure of adventuring as an excuse to run away from commitment, avoiding the intimacy of truly loving relationships. I used adventuring as an excuse to run from my fear of love.

I’m on a different river now, floating down the canyon of deteriorating dementia with my wife. In the quiet water, things often seem normal, little changed, and it’s easy to deny that dementia is even here. But, then there are whispers, my wife will say something that makes no sense, and my mind is suddenly drowned by the rush of reality flooding my consciousness. Dementia is here and it’s not going away.

It happened today.

“Will you walk with me?” she asked.

“Sure,” I replied, “where are we going?”

“To visit my mom.”

In the process of putting on my coat, I stopped. My wife’s mom lives in Zacatecas, Mexico, 2000 miles away.

“Your mom doesn’t live here,” I shared.

“Yes, she does, right there,” my wife answered, pointing outside.

I smiled, trying to hide my disappointment that her mind had slipped again.

“Sure,” I said, helping her with her coat, “let’s walk.”

As I hold my wife close in the night’s darkness, I feel the peace and warmth that can only be found in the adventure of love.

tio stib

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My Dementia Diary 44 – Yours to Count On

Over the years, I’ve made hundreds of acquaintances, but precious few friends. The difference between one group and the other is four words.

Yours to count on.

Those are the words inscribed in a book given to me by a man I’d spent an intimate and intense week with during a workshop in Alabama. He gave me the gift as a tribute to what we’d gone through together, including a fire walk.

I remember opening the book and seeing the words, saying them out loud,

“Yours to count on.”

I looked at him. He smiled, and shook my hand. 

I’ve never seen him since, haven’t communicated in any way. But, if I reached out to him today and asked for his help, I know he’d be there.

He was that kind of guy. he was a real friend.

Some time back, faced with a seemingly impossible situation where I was caring for a dying family member while needing to complete a construction project before a bank loan was due, I reached out to three guys who were friends.

They didn’t ask why, but jumped in a car and drove for hours to show up at my front door. they spent several days completing the project for me, shook my hand, and returned to their lives.

They were mine to count on.

There have been others. The kind souls who spent hours comforting my dying relative, giving me a break to renew my soul. 

Good human beings. 

As I stop and pause to consider the blessings of true friendship, I’m reminded that I, too, want to be someone who can say,

“Yours to count on.”

tio stib

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My Dementia Diary 43 – The Last Christmas

I’ve struggled with this post, started and stopped it many times, unable to create any sort of writing momentum. I sense this is the result of a month in Mexico, spending the Christmas holidays with my wife’s family in a world that is quite foreign to me.

I took my wife to her home town because I felt it might be the last Christmas she would be able to remember who her family was. It was a trip that had to be made. It was a trip I’ve avoided since I lost my sight as the world there is a blind person’s nightmare. It is not only a never ending physical obstacle course for the disabled, but it is also noisy, dirty, and unsafe. I spend the entire time there in survival mode, just trying to stay sane.

Needless to say, any urge I might have had for creative writing quickly disappeared. 

And so it went for a very long month. yes, the family was glad to reconnect with my wife, especially our two oldest kids. It was interesting to note how different family members interacted with her. I was impressed that her mother, normally quite loud and outspoken, simply listened as her daughter babbled on and on, repeating questions, often making no sense. Mom was simply happy to have her daughter with her. Our daughter, though, kept telling her mom to speak Spanish instead of gibberish. That wasn’t going to happen. She couldn’t accept her mom’s dementia. 

After days of dragging us around doing errands and my wife getting upset with the continuing chaos, our son realized he was going to have to change his attitude and behavior with her. He’d finally grasped that his mom was no longer a rational, intelligent adult but a loving, open hearted four year old. Instead of trying to make his mom fit into his world, he would need to fit into hers.

And so, he just played with her.

That was the high point of our visit.

It has been several days since our return to the States. I didn’t realize how exhausting the journey had been until we returned home. I now have an even deeper appreciation of our simple, ordered life here.

I’m hoping the urge to write will reawaken again.

tio stib

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My Dementia Diary 25 – Life in Reverse

Noting my wife’s continuing mental deterioration from rational adult to simple minded child, I was reminded of a piece I saw George Carlin do some years ago. Bless his brilliant and irreverent mind, George has moved on to the great comedy stage in the sky, but he leaves many laughs behind him. I think his piece on “Life in Reverse” is all-time hilarious. Wouldn’t it be great if life actually worked this way-

tio stib

Life in Reverse By George Carlin

In my next life I want to live my life backwards.
You start out dead and get that out of the way.
Then you wake up in an old people’s home
feeling better every day.
You get kicked out for being too healthy,
go collect your pension,
and then when you start work,
you get a gold watch and a party on your first day.
You work 40 years
until you’re young enough to enjoy your retirement.
You party, drink alcohol, and are generally promiscuous,
then you are ready for high school.
You then go to primary school,
you become a kid,
you play.
You have no responsibilities,
you become a baby until you are born.
And then you spend your last 9 months
floating in luxurious spa-like conditions
with central heating and room service on tap,
larger quarters every day and then Voila!
You finish off as an orgasm.

I rest my case.

by George Carlin, 1937-2008

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My Dementia Diary 42 – My Gratitude List

Today’s gratitude list-

our good health and well being
a comfortable home that fits us perfectly
living in a safe town in a free country
clear air to breathe, clean water to drink
hot showers
phone calls from caring family
the Brocks, our compassionate neighbors
hot chocolate  and chocolate chip cookies
our daily walk adventures
digital music from Beethoven to Arkenstone
a computer that defies blindness and lets me write
a life full of smiling memories
audio books and my writing mentors
2012, our honeymoon year
a tasty club sandwich
playing the banjo
hearing my wife whistling
snuggles and wet kisses

and another birthday, happy, happy!

tio stib

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