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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Sorely Missing Wilderness

I woke with an aching soul
a yearning to be free
away, apart, alone again
just wildness and me

humanness had left me dumb
senses dulled, spirit numb
and then I heard the ancient call
smiled
walked out
and left it all

rambling down an empty road
I crossed the last frontier
and stood once more in wilderness
and heard my heart beat

here

here

here

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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Chocolate Chip Cookies

the sudden urge for sweet
flooded my mind
with cookie moment memories

the ecstasy
the ultimate delight
of warm, chocolate chip cookie
melting in my mouth

licking the spatula 
covered with cookie dough
savoring
each chewy  chocolate nugget

the crazed anticipation 
as the aroma of baking cookies 
silently owned the house

ring!
the timer bell
rushing to the kitchen
eyes wide as the oven door opens
the tray slid out revealing
rows of perfectly formed
golden brown cookies

salivating

is there anything better than a warm chocolate chip cookie
washed down with a cup of milk

sure there is, a half dozen warm chocolate chip cookies 
washed down with several cups of milk

“Don’t you dare!
Those cookies are for the bake sale.”

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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Why I Like Being Blind

No, in truth, I seldom like being blind. However, there are moments when I recognize that blindness has some benefits. Here are my top ten reasons to like being blind-

  1. When I get up in the morning, I can’t see how old I’m getting in the mirror.
  2. It’s nice being personally guided through airport security and other checkpoints, avoiding long lines of annoyed travelers.
  3. I don’t have to pretend I’m ignoring people I don’t like. I really can’t see them.
  4. I don’t need to shave every morning, or for that matter, worry about wearing matching socks. Yes, I admit age has something to do with this disregard for fashion.
  5. I can now unabashedly ask for help, paying no attention to my previous suffocating shyness. I need all the help I can get.
  6. I’m no longer asked to help people move. My history of breaking other people’s valuable objects has nothing to do with this.
  7. I now have an excuse for talking to myself. I’m talking to my computer.
  8. I now have a socially acceptable excuse for eating with my fingers. It’s the most effective way to get food into my mouth.
  9. I now have a more acceptable reason than being drunk for tripping over curbs. Yes, likely I’ve been drinking, but now I’m blind drunk. .
  10. 10. When late for appointments, it’s now much easier to say “Sorry, got lost.”

I’m always seeking more reasons to be happy with blindness, please add yours as a “Comment” below.

tio stib

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