The Blink of an Eye

         We live less than the time it takes to blink an eye, if we measure our lives 
         against eternity. So it may be asked what value is there to a human life. 
         There is so much pain in the world. What does it mean to have to suffer 
         so much if our lives are nothing more than the blink of an eye?   ~   Chaim Potok

Just how quick is the blink of an eye?  About 300 milliseconds or 1/3 of a second.  And this is the window of time in which a conversation with Myrtle can go from having some meaning to no meaning at all - the blink of an eye.

She can observe the rhododendron petals lost to yesterday's heavy rainfall and mention the chipmunk stealing the birdseed which was scattered to the ground by the oversized bluejay feeding sloppily just minutes before.  In this same sentence, she wonders aloud if her (long dead) father is selling his house and why her (long dead) brothers haven't visited.   Remarkable powers of observation coupled with anachronistic impossibilities.  In the same sentence.

When I listen to Myrtle my mind gets benumbed. The sheer unworkable nature of the content in her speech and the hairpin turns from sensibility to absurdity - these overwhelm me.   My husband and four kids think that I have superpowers when it comes to tuning out annoying chatter.   They are unanimous in this belief, and maybe it is true.  But it is not so with Myrtle.  It is impossible for me to hear her speak, without listening; although I try, I cannot filter out the irrational.   And the irrational fatigues me.

A moment of calm after the storm

       

Yes, it has been a hard, hard week.

She had four consecutive days of mere napping - no real sleep.  She spat out her medications. She spat out the food in which I hid the medications.  She yelled for hours throughout the night for no discernible reason.  It was as if she decided to tear at the world with all her might for as long as she could…. which turned out to be four days.  (This did not feel like the blink of an eye.)  Yesterday, day five of her protest, she decided to rest and she slept much of the day and night.

                                                        

“…. a blink of an eye in itself is nothing. But the eye that blinks, that is something. A span of life is nothing. But the man who lives that span, he is something. He can fill that tiny span with meaning, so its quality is immeasurable though its quantity may be insignificant. Do you understand what I am saying? A man must fill his life with meaning, meaning is not automatically given to life.”  ~  Chaim Potok

Well, a lot can happen in the blink of an eye.  A life can begin or end in that instant. So what about that little span between the start and finish?   It is everything to us, it is right now, and it only lasts after we are gone if it held meaning.  Myrtle is still filling the little span.  Her milliseconds do not follow any order, now.  So what.  Nor do they have pace.  Big deal.  She is a special kind of time traveler, that’s all.   I like this perspective.

She floats around the milliseconds, living fluidly in the past and the present.  Occasionally, she seeks to fill the tiny span furiously, as though she just remembered that meaning is not automatically given to life.  We must work at it.  She is still adding meaning to her milliseconds.  That's all.

She is recuperating now from the frenzy of this week.  She has earned this temporary rest and she will be worthy and ready for her final rest when God steps in. She has done so many things well.  She has done so many things right. She packed meaning into all of the nooks and crannies of her life and that is the point.  This is a thing I cling to with my mind, while my heart clings to the cross.  While my heart clings to the cross.

It is hard work to fill one's life with meaning. That I do not think you understand yet. A life filled with meaning is worthy of rest. I want to be worthy of rest when I am no longer here.  ~  Chaim Potok

Caged Birds

The caged bird sings with a fearful trill

of things unknown but longed for still

and his tune is heard on the distant hill

for the caged bird sings of freedom.

                                               ~M. Angelou

When I was young my family had a bird.  In a cage.  His name was Bingo.  He never seemed to remember that he was in a cage and so when we removed the night cover, Bingo fluttered against the thin metal prison bars with powerless, futile flutterings, which persisted until the bird got tired and gave up.  Many times a day however, that bird sang.  It sang and sang and sang.  I always thought that Bingo only sang when he was happy.... when he forgot that he was in a cage.
But, maybe he never forgot that.
Maybe he wasn't singing.
Maybe he was screaming.

Myrtle talks ceaselessly about going home.  She doesn't know where that is but she resolves to go there at least 50 times a day.  Earlier this week she tried to puzzle out how she would get to center city Philadelphia.

Myrt:   I can take a train to center city, can't I?  Does a train run past this hotel?
Me:     What will you do when  you get to Philadelphia, mom?
Myrt:   Go to my home.
Me:     How will you get to your home?
Myrt:  I'll take a bus.
Me:     But, mom, you live here and you don't have a home in Philadelphia.
Myrt:  I have to have a home there!
Me:     Why?
Myrt:   Because that's where the bus GOES.
Me:     Ah.  Hey, let's build something with these blocks.  Watch me ....

And I show Myrtle how the tangram blocks can be arranged together to make any shape in the world. She starts to move the pieces.  Slowly, ever so slowly.  It is hard for her but she concentrates on it for a good while and I clean up my kitchen, fold laundry, and get James to do his Latin homework.

When I come back she shows me what she made.  Pretty cool, mom, what is it?  

Myrt:   It's a bird.  It's a lucky bird.

Me:  Oh, I see it!  Yep, that's a bird alright.  Hey, I'm impressed.   So, why is it lucky?

Myrt:  Are you kidding me?  It has wings.  It can fly.

Myrt and the tangram block bird

Myrtle notices birds.  She enjoys watching them.  My dear husband put a bird feeder right by the window of her room and she always stops to closely watch the customers that come to nibble (the Eastern Bluebird is her favorite).  Maybe she is imagining their immense freedom.  I wonder if she longs for her youth when she was as nimble.  I wonder if she thinks about her life before her wings were clipped and her feet were bound by this ghastly condition which consumes her soul piece by little piece each day.  I wonder if birds are her spirit animal. 

As I was settling her in tonight, she called out in a shrill, frightened voice.  "Wait, Rosemary!"

Her face was pale and her eyes were terror-struck.  "I'm afraid to drive the car",  her voice quivering. "I'll need someone to drive me to the train. Ok?"

"Sure, mom.  Don't worry.  I'll drive you.  Everything's ok. Everything's good."

Her head falls back in relief and she begins the soft recitations and wailings which precede her sleep.  It is a kind of singing.  Whimsical intonations.  A lonely lullaby.  Her birdsong.   

My husband's gift to Myrtle 

Dementia is a parsimonious opponent.  Whatever it delivers, it simply demands to be enough, but it never, ever is.

She has no memory of  the flowers and gifts her children have showered upon her these past 10 years - that is how long her mind has been hijacked and broken and glaciated.  All you ever have when a parent's soul is pierced with this permafrost are the brief moments, in between their bouts of hallucinations, rage, confusion and psychosis -- the brief, imperfect moments of recognition, gratitude, or pleasure.  And you hope against hope that this is enough; hoping even in that  moment when you see these things flicker and falter and fade into nothingness. 

  

Dementia - the most execrable eternal footman.

But a caged bird stands on the grave of dreams

his shadow shouts on a nightmare scream

his wings are clipped and his feet are tied 

so he opens his throat to sing.

                                                            ~ M. Angelou

The Great Grandchild Prescription

It did not start out a good day.  She forgot how to make the small turn from a standing position; this is necessary to land squarely in the wheelchair.  "My feet won't move," she said with difficulty, perplexed.  I think:  Maybe it's temporary.  Maybe it's permanent. 

After breakfast I handed her the small paintbrush she has been using these past weeks, and I gently suggest she complete a butterfly painting.  She did not know what she held in her  hand.  Turning it over in her fingers, she was utterly puzzled.  "What is this?" she mumbled.  She leaned over staring hard at ever centimeter of the small brush waiting for understanding.

Some of my siblings were arriving later for a visit, bringing with them grown grandchildren and a clutch of small great-grandchildren.  I had held high hopes for a great visit,  but Myrtle was in a fog that was worse than usual.  She was lost and benumbed in her confusion.  I tried everything to help her get a bead on the day but all morning she just sat and stared at things.

Then the happy wave of children, grandchildren, and great grandchildren arrived.   Her delight was boundless.  She laughed.  Her energy returned.  She was enchanted by their antics; her day and her spirit were thoroughly transformed.   No pill,  no activity, no tv program, and no adult could have accomplished what the collective frivolity of babies and children achieved .... effortlessly.

This Mother's Day weekend it was a true gift to watch these little, little people playfully steal victory from the jaws of defeat.  Myrtle's multi-generational blessings slayed the dementia for the duration of their visit and led the festivities with ease.

They came and they sprinkled stardust, they truly did.

Puzzles-R-Us

The most valuable skills taught to me by Myrtle long ago are the very ones on which I rely so heavily, now that I am her caregiver.   She has always been plainspoken and blunt (but with a heavy does of eternal optimism and cheerfulness).  Growing up, I had the sense that there was no single thing she could not handle and no single thing that would shock her. She was unflappable.  Yet she laughed at herself often, and when life revealed its treachery, she laughed at it, too.   She still does this.

Each day with Myrtle is a cryptogram.   If she is unwell in some way, it will manifest in an odd behavior because she doesn't experience pain directly.  If she gets bored, she weeps and fidgets.  If she is anxious, she demands to be taken to her parents.  As with cryptograms, nothing is what it seems to be.  Each day - a riddle, a brain-teaser to be decoded.  Each day - a new knot to unknot.  

And Myrtle loved puzzles.  Our family always had a 1,000 piece work-in-progress under the tablecloth of our dining room table.  After dinner, she would quietly conduct an unveiling, lifting the cloth, revealing the fragmented impression beneath with its many disordered bits.  We would all join in, slowly.   Never did she say, "Come here and work on this, kids."   Nope.  She simply revealed the unfinished. That was our cue to come to the table and begin the work.

She is still revealing the pieces and I'm still trying to put it all together.  

Of the tools in the toolbox which I turn to each morning to launch our day and to get us through the unfilled hours, some have failed utterly.  Last week, it was a basic jigsaw. Simple.  No more than 30 pieces.  I was pleased with myself for remembering how much she loved putting things together. But,  it proved to be too much for her.  Almost an hour went by and she just sat and stared at the pieces, picking them up, then putting them back down, perplexed.  I had even lined-up the outside border with their interlocking mates, to make it easier.  No go.  I offered to help. "Go Away,"  she said angrily.  It confused and embarrassed her that she could not do this basic jigsaw and that just broke my heart.  I had miscalculated.  

But Myrtle herself had prepared me well for this kind of thing.  Through the decades I heard her voice emerge, as clear as a bell:  "Rosemary, if at first you don't succeed, suck it up.  Try again.  You're not the first person in this world to fail at something, honey."

I put that puppy dog jigsaw away, thinking I have to try again.  I watched as she repeatedly folded, unfolded and refolded a paper towel.  That's it.   I grabbed every cloth dinner napkin and every small terry cloth towel in the entire house and tossed them into a laundry basket.  

"Hey, mom, can you help me fold this laundry?"   Will this work, I wonder?

"Oh, boy, look at all that",  she said.  
And then, just like a mom, she added,  "Yeah, yeah, bring it here, I'll get that done."  

And she did.  

And she smiled.
And she felt useful  

And she was happy.
And the morning was rescued.

Two weeks ago, I had purchased a child's coloring book while at the pharmacy picking up her meds. It was a coloring book of kittens.  For toddlers.   Clear, easy pictures to color in.   I was delighted with myself, thinking how she would be able to do this simple activity and we would do it together and I'd play Frank Sinatra music and she would be happy.   I whipped it out after breakfast and she looked at it a few minutes.  "This is a book for little children", she commented scornfully, pushing the book away.   Hmmm.   Well, you're right, of course, but, boy, that stings.  
This was one of my early miscalculations and once again, I heard her voice.  It was coming out of the year 1974 when I had broken up with a boyfriend and my misery and histrionics were,  I'm sure, inflicted on all nearby.  
"I hope you're not planning on holding this pity party forever," she said firmly.  "You know, the world doesn't stop turning just because you're disappointed."

Right, right, this is not about me.  She taught me that..
Try again.   She taught me this, too.

I did try again.  I bought a coloring book of old movie posters.  Movies from the 50's and 60's.  Not childish at all.  Today, here she is cheerfully coloring "Breakfast at Tiffany's".  First, she commented on all of the flicks she had seen or had not seen.  She was stumped by the big crayons, though, so I quickly and wordlessly substituted colored pencils.  These, she really liked.

So, the movie poster coloring book was a homerun.
This is important, because when Myrtle is successfully occupied, everything works more smoothly; the day takes shape and launches. We do not always cast off smoothly, though.   She is baffling and she is baffled and somewhere buried in between these two states is the key to a good day.  

Day 15 - Flower Power: Arranging, Studying, Painting and Planting

Myrtle loves her flowers.  She always has.  In the short video clip below, she is arranging plastic flowers in a styrofoam cube.  After breakfast each day, I pull the flowers out and set her up at her window desk to arrange them....again.  She smiles a smile of surprise and delight each time.  "Oh, I can do this!" she exclaims.

In the picture to the left,  she is studying the rare flowers of the Pine Barrens.   She stayed utterly absorbed in this activity for over an  hour.  I hardly knew what to do with myself but turned to mopping my kitchen floor and then drilled my 14 year old on vocabulary words for his Honors English class.









She was then interested in 
painting these flowers and 
another productive hour went by.





Going with the flower theme, after lunch (her favorite - sweet potatoes), we then planted seeds.   She especially loved this because she knows about gardening. The neural real estate which stores her gardening knowledge is completely intact. She was downright joyful.  What a pleasure it was to watch her work so happily.

On this day, filled with flowers pictured, painted and planted, Myrt took no naps.  That is an interesting thing, because usually it is difficult to keep her awake midday.

Lesson learned?  Well, she says the oddest things throughout the day - things which point to a cognitive absence and a sheer lack of understanding of the moment.  However, she is still a person who gets bored and who craves engagement in this life ... even though she finds it perpetually baffling.

Flowers are a proud assertion that a ray of beauty outvalues all the utilities of the world ....Ralf Waldo Emerson

Day 12 -- Bagpipes, Sketches, and the Gift of Sleep

Myrtle sleeps a lot, sometimes at unpredictable moments.  James (her 10th grandchild) has been wanting to play his bagpipes for her.  Have you ever stood near bagpipes going at full tilt?  This instrument is really quite LOUD.   Not wanting to alarm Myrtle or blast her out of  her wheelchair with the bone-rattling sound of bagpipes,  I've been putting him off.   A few days ago, he did play for her.   If you watch to the end of this short clip, you will understand my point.

How in the world does a person sleep through this?

Yesterday, after a long day at the Cooper Cup Regatta, Andy (her 9th grandchild) decided to visit with her.  They were watching a cooking show.  I guess dropping off quickly into a deep sleep is not a gift reserved for the aged?

                                             Five minutes after sitting down with Grandma.....

And then there are moments when sleep is not sleep  --  sometimes Myrtle forgets to open her eyes, or something temporarily turns off this automatic function.  Sometimes, she eats, talks and fidgets with her blanket, but does not open her eyes and does not know that they are closed.

Not wanting this to become permanent I wondered how I could encourage her to keep her eyes open. I tried introducing her to a "scratch and draw" art book (when she fails to open her eyes).   She really liked it.

Remarkably, she remembers how to draw.  More remarkably, she did part of this with her eyes closed.

By far the most difficult adjustment for me has been Myrtle's irregular wake-up times.  She rises in the morning at different hours - sometimes 7 am (that's ok) - sometimes 5:30 am (oh, no).   I have tried keeping her up later, but this does not result in a later rise for Myrt.  And there is no "letting her wait a bit", as she does all within her power to escape the protection of the bars on either side of her bed, including getting herself thoroughly and painfully wedged in between the bars.   If you know me, you know I do not do well before my first mug of strong black coffee.  I like to get up quietly and sit alone with my thoughts, my plans for the day, my prayers, and YES my coffee.  But, in order to rescue Myrtle from herself,  many days I must spring into action well before I am ready.    Sigh....

Sleep is a gift.  Choosing one's wake-up time, even if it is early, is another gift, heretofore undervalued by this blogger.  But, honestly,  my silent, solo morning cup of Joe is proving to be the greatest gift of all and it is one I will never again take for granted.