My Dementia Diary 49 – Happiness!

As my wife whistles joyfully nearby while she works on a coloring project, I wonder why I’m not similarly joyful.

Am I happy with my life? No. Am I unhappy? No. Then what am I?

Unlike my wife’s demented four year old mind, I’m many years past childhood. I can remember those happy days, but then life got complicated and so did happiness.

It seems my feelings about “happiness” have been evolving for years. Childish delight and wonder was run over by a need to accomplish things, win races, climb mountains. There was an ecstatic high when such goals were achieved. This was happiness. Of course, I often failed. Then came a life choice, is “happiness” about winning or simply doing my best? Sometimes “yes,,” sometimes “no,” depending on my mood and maturity in the moment.

Enter the paradox of people. My biggest joys have come in celebration with others. But my darkest times have also been caused by people. Another “happiness” question, do I need to get everything I want or is compromise enough? Compromise has become easier over the years. Age has mellowed my need to climb mountains.

Then I lost my sight. I realized that much of what had made me happy were things that I could see. That world disappeared and I became very depressed. It took some months, but I adapted to my much constrained life and found some satisfaction in being able to operate independently. However, I was a long, long way from “happiness” at that point.

Blindness seems to have prepared me for the next challenge, dealing with my wife’s dementia. My much smaller world fits well with her smaller life needs. Happiness for her is a walk to the water, babbling about all she sees and hears, knowing that I’m listening. Making breakfast together is a delight for her. Visiting with friends is the highpoint of her day. I’m able to make such things happen.

I take satisfaction from such service.

Am I happy? No. Unhappy? No. But, at this point in life, I am content.

Most of the time.

tio stib

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My Dementia Diary 48 – Both Sides, Now

It has been raining in our town, a string of wet, dark, gloomy days that make it easy to stay inside, sit in the easy chair beside my wife as she colors happily, relax, and listen to life happening  around me.

Lost in this oblivion, I heard my mind say, “pay attention-

a familiar song was playing on the radio. It was Joni Mitchell singing “Both Sides, Now.”

Both Sides, Now

Rows and flows of angel hair
And ice cream castles in the air
And feather canyons everywhere
I’ve looked at clouds that way
But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way

I’ve looked at clouds from both sides now
From up and down and still somehow
It’s cloud’s illusions I recall
I really don’t know clouds at all

Moons and Junes and ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I’ve looked at love that way
But now it’s just another show
You leave ’em laughing when you go
And if you care, don’t let them know
Don’t give yourself away

I’ve looked at love from both sides now
From give and take and still somehow

It’s love’s illusions I recall
I really don’t know love at all

Tears and fears and feeling proud,
To say “I love you” right out loud
Dreams and schemes and circus crowds
I’ve looked at life that way
But now old friends they’re acting strange
They shake their heads, they say I’ve changed
Well something’s lost, but something’s gained
In living every day.

I’ve looked at life from both sides now
From win and lose and still somehow
It’s life’s illusions I recall
I really don’t know life at all

Joni Mitchell, 1968

These words pulled me into a cosmic pinball game, emotions flashing, as my heart bounced up, down, and around through forgotten memories. Yes, I’d heard this song before, but not the way, years later,  I heard it now. 

I was left with two thoughts-

Joni Mitchell is a heckuva songwriter and musician.

I really don’t know love or life at all.

Both Sides, Now

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

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 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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