My Dementia Diary 64 – Holding Hands

we have reached a place
where holding hands
is a pleasure
beyond orgasm

we have become
an incalculable oneness

after miles
years
of laughing, loving, sharing
a life together
I reach
expect
her soft, strong, tender fingers
to entwine with mine

my heart banishes all thoughts
that one day her hand
will not be there

tio stib

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My Dementia Diary 59 – Growing Down

 

“Oh, what a cute baby!”

If you, like me, have been blessed with baby experiences, you’ve often heard this phrase, or even uttered it yourself.

“Oh, what a cute corpse!”

Bet you haven’t heard that one though.

With too much time to think lately, it occurs to me that life’s two extremes, birth and death, get vastly different types of coverage.

Growing up is much more popular than growing down.

Consider the many different options for how to have a baby, from home births to dropping the newborn into a pool of water, then the  countless ways to approach and deal with the phases of child development. Of course, the celebrations of “firsts,” the first word, “dada,” (or was that “dodo?”), the first step, then walking, running, and on to the first day of school and driving a car.

Why do you think there isn’t the same attention and celebration paid to the steps in the death of a demented person?

“Oh, wow, can you believe it, mom just started babbling.”

“Oops, he doesn’t remember our names anymore, let’s have a beer.”

“Ewww, Mom didn’t find the toilet this morning.”

No, folks don’t pay nearly as much attention to growing down as they do to growing up.

Seems staring mortality in the face is scary.

tio stib

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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

You might also enjoy:My Dementia Diary 49 – Happiness, My Dementia Diary

 

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

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

My Dementia Diary 50 – Marathon Man

I’m better suited to marathons than sprints. My most satisfying successes have been the result of disciplined and persistent efforts focused on achieving goals over long periods of time. Yes, I’ll admit that such persistence has sometimes turned into close minded stubbornness that compelled me to continue with failed pursuits which should have been abandoned long before. Such lessons had to be learned.

From early on, I was never much of a sprinter, not one to jump into things for quick rewards. Part of this was certainly how I was brought up, believing success demands hard work and disciplined effort. I learned the value of patience and persistence. I also learned that success, or at least success as I’d defined it in the moment, was sometimes something I had no control over. More lessons.

Which brings me to now and my present life challenge, a blind man caring for his dementia stricken wife.

I seem to have been perfectly trained for this opportunity. My personality, my values, my previous life experiences have prepared me well. Yet, while I take some comfort in this knowledge, there is also the realization that this is a race where there will be no celebration at the finish line. 

This is a marathon which must be run one day at a time, satisfaction gained only upon reflection each night when I ask myself-

Did I love as best I could?

tio stib

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River of Time

once upon 
a nursery rhyme 
I was born
on the river of time

bouncing
splashing
over waves
with fantasies
and blue sky days

then came the sound of fear
as adulthood thundered near
some hopes were dashed 
some survived
some dreams drown
while others died

river of time
river of time
we all come together 
on the river of time

and so my life has floated on
through rapids wild
past silent songs
a new adventure every day
even as my hair turned grey

river of time
river of time
carry me home
oh river of time

tio stib

2016, 2019

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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

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