A Darker Day

Alzheimer disease has been called The Long Goodbye.    It is also The Long Grieving.  Over the last few weeks I have watched my Bert lose some more brain cells.  Now I am more instantly aware that it is happening.  That was not always so.  Prior to this it would take some prolonged period of imperceptible change for the loss to be noticed.

One morning he had his yogurt after his sandwich as usual.  The next morning he does not eat it and I ask: “Don’t you want your yogurt today?”

My Bert looks at his plate, his cup, and his knife then picks up the banana peel and says:” Oh, yes, I do.  I want my yogurt.”   He begins to put the peel in his mouth.  I stop him and give him the yogurt.  I do not wait for this to recur.   I know yogurt is now another item that befuddles his mind.  His brain no longer recognizes that so familiar item which has been a part of his breakfast for as long as I can remember.

My Bert now tells me goodnight and says he is going upstairs to bed.  There is no upstairs in our home.  In fact we live in a condo and have always lived in bungalows.  He needs to be reassured that yes, this is our bedroom, yes, this is our bed, yes, I will be sleeping in that same bed, yes we will be sleeping together and yes, Jan, Gerard, Ossie, Wendy, Marg, Meintje and a few more people, all who are already dead will be sleeping with us too.    I offer no correction nor explanation.   If my Bert is less anxious having them with us, well, come on in.

Each day my Bert tells me repeatedly how much he loves me.  I wonder if he is saying it to reassure himself.  Maybe it is just that familiar phrase he has been saying for so long and so often.  Maybe he likes the smile it brings and the:”I love you too.” I know it has not lost its meaning for him nor for me.

I sometimes catch a vacant look, accompanied by an unintelligible mumble.  I wonder what is going on in his brain.  Do the amyloid plaques cause any sensation as they fill up and kill off another cell?   What about the tau tangles? Do they emit any sound as the deterioration accelerates?  There is no indication of pain but I wonder if there is anything, any sensation that tells my Bert something is amiss.  I will never know.

My Bert is entering the late stages of dementia.  I am in the beginning stages of grieving.   

To see the Light you must live in the now, yet I cannot forget what was.   I remember the good times, the fun we had, the amazing life we lived but I am remembering in the past tense as if my Bert is the past.  I censor myself.  My Bert is still here.  There are still moments of absolute clarity and I can see what used to be in the here and now. 

Now I understand the ambiguity of memory.  It can be soothing and at the same time cruel.  Memory is the handmaiden of grief.  The mind of its own volition brings up memories and by definition that means the past.   I am remembering the then, the before and it is making the now unbearable.  The mind and my memories are not static or finite.  Therefore, neither is the grief.  I am grieving the loss of yesterday, last year, our beginning and yesterday.   My memory meanders with the mind’s stream of consciousness, skittering hither, thither and yon and grief is its partner.

My Bert is slowly leaving me.

The Light dims as I contemplate the inevitable.

Imagining the after is unendurable.

There is still some light.  The loss is not complete.  I grieve but do not yet mourn.

Not yet.

The Meander:  My respect and admiration for caregivers is immeasurable.   No matter how special this particular challenge is, the journey is heart breaking.  It tests the will.   It is an obligation made bearable by love.   You have no choice.     I know.  I love.  I hurt.  I am a caregiver too. 

Storytelling in Motion – Bodrum

We flew to Istanbul one week before the cruise began so we could explore that ancient city at leisure.  It would be our third exploration but there is so much to see and shopping in the Grand Bazaar deserves a trip in itself.  Our hotel surpassed our expectations and then here we were ready to board our luxury yacht. 

Yes!  As fans of small ship cruising we were about to board a five-mast staysail schooner, one of the largest sailing cruise ships in the world.   No, I am not a sailor but that is the description of what would be our floating hotel for the next seven days.   The number of passengers on board was a mere 294.  

The first exquisite experience was to watch as the computer operated sails were raised with coordinating music.   Istanbul slowly faded.  We saw other ships and boats but none compared to ours.  I knew this cruise would be special

We arrive at Bodrum, the only maiden port for us on the voyage so off we go to explore.  I had done my research on Bodrum so my head was filled with Halicarnassus, Herodotus and events that occurred in years that were followed by BC, and The Mausoleum.   

I like to think that Bodrum is famous because of ostentatious love.   When the Satrap, or ruler, Mausolus died in 353 BC, his wife had an enormous white marble monumental tomb built.   The top was a stepped pyramid and was such a wondrous accomplishment that the Greek historian Pliny designated the Mausoleum as one of the Seven Wonders of the Ancient World.   It was designed by the great Ionian architect Pytheos.  Not only was it the largest tomb ever built by the ancient Greeks it was also well built as it stood for 19 centuries until an earthquake destroyed it around the 14th century.  Only the massive foundation remains though some artifacts can be viewed inside the Castle of St. Peter.

With my head filled with all this antiquity and the romance of a bygone era, I was so surprised to see the modern, clean city nestled on the sunny bay and surrounded by spectacular scenery at every turn.   The only discordant note was the proliferation of vacation villages and timeshares cluttering up the shores.  It reminded us of the Costa del Sol.  I thought of it as the Marbella of Turkey.  Despite this, it still had the ambience of being a step back in time.  It would not have surprised me to see Anthony and Cleopatra holding hands and strolling through the Theatre of Ancient Halicarnassus.

Yet the best was yet to come.  On arriving back on our yacht we were informed that a dancer, an expert in both the history and art of belly dancing was on board to entertain.  We debated going but curiosity won out.   There was an introduction and history of the art by an emcee who informed us that the dancer would perform four stories in dance.

Oh, what a treat.  This gorgeous Turkish woman came out, gave an elegant bow and the music started.  Within a moment we knew we were experiencing something special.  This was pure artistry.  She was grace incarnate.  She moved in fluid, sinuous, sensual patterns, undulating from her toes to the ends of her hair.  The tiny musical coins sewn into the costume added to the mystique.  The movement of her eyes, the flutter of her lashes and the placement of hands and fingers and the ripple of her undulating torso and hips were all integral to the telling of the tales.   We were in awe. 

I looked over at the resident dolt, yes, there was one.  He had a beer bottle almost at his mouth but he did not take one sip, so enthralled he was.  That was the greatest compliment.  She danced as if she was engaged in intense communion in a separate interior place.   Yet we were totally engaged.  Her dancing was a most eloquent language. Mesmerizing.

You know an outstanding performance by what happens when it is over.  Here, there was a long moment of complete silence, a collective letting out of breath, and sighs of wonder broken by: “Oh, what a performance.”   We rose as one and the sound became a cacophony as we each tried to find the words to articulate our admiration and appreciation of what we had just witnessed.

Nearly every guest had seen belly dancing performances prior to this one but we all agreed that they fell far short.  My Bert kept asking: “How did she do that”?”  He was not the only one.

The Meander:   We try to find pleasure in everyday small miracles.  This was a miracle, not so everyday and not so small.   My memory is packed with travel miracles.

Progressing to Regression

The doorway going into the main bathroom was the measuring post.   Every now and then we would catch a child as he rushed hither and thither and announce cheerfully:

“Let’s see how much you have grown.”  Then out would come the measuring tape and a new pencil mark would be placed on the door jamb.

“Hey, you have grown another inch.”

As our boys grew there were other measuring tools.  Next grade in school, clothes and shoes that were outgrown far  too quickly.

There are no boys in the home any longer but I am still measuring.  It is a different kind.  Now I measure the regression.  I notice a similarity.  The boys had growth spurts; the regression also has spurts.   For a month or three I am relishing the pause of a good plateau and a manageable routine, and then:

“Paula, I got three.”   My Bert is lying in bed.  The sentence catches my attention as the tone has a certain timbre that tells me this is not a welcome ‘three’.

“Three what?” I ask.

“Three!!”  There is a note of impatience.

My Bert puts his thumb and first finger together to form a circle and says, even more impatiently:

“Three.  Three of these.”   I look at him and calmly say:

“Three round holes?  What do you want to do with them?”

“I don’t know.”  Now he sounds agitated.  I remain calm on the surface.   This is totally out of context and beyond the norm.  This is entering Alzheimer’s World. 

“They are just holes.  Don’t worry about them.  Just ignore them and go to sleep.”

“I can go to sleep?  Do you have them?”  He shows me the round holes and I make as if to take them away as I open his fingers.

“Yes.  I have them.” I say with a smile.

“OK, good.  Goodnight, Sweet Pea.  I love you!”

“’Night, ‘night.  I love you too.”

That is not all.  I now regularly sleep with a variety of people that only my Bert sees.  They are real to him.

“Paula.  They are there.”

“Who.”

“You know, them.  The ones, who um, but they go to sleep.  They sleep with us.”  He chuckles: “They are going with us.  They are…see… and we need cheese.”

I grasp onto that: “Tomorrow I am going to the Dutch shop and I will get cheese for your breakfast.”

“What cheese?  I want to sleep.  Take care of …mumble.”

“OK.  I will.”

We are preparing breakfast.  My Bert is painstakingly building his usual cheese sandwich.  He puts the cheese away and looks at the sandwich.  He is not satisfied and I notice a spot where the bread is not covered.   I know that will not do.

“I see an empty spot”, I say.

“Oh yes.  Give me the shoes.”

Without the least hesitation I pass him the cheese.  He takes it, covers the naked spot.  He looks at the sandwich and smile.   Should I have corrected him?  Why?  I am in Alzheimer’s world and I speak and understand Alzheimer.

In less than 12 hours I have witnessed a bit of anxiety, aphasia, confusion and hallucination.  I think we have just fallen off the plateau.  There will be another and I will have to adjust.  I know there will be more work, more care, patience and love needed. 

I have received notice of the new plateau.  Now after eating I surreptitiously stack the dishwasher.  Yes, my Bert wants to ‘help’ me by doing the few dishes but he has forgotten how to get hot water.  The kitchen tap is a single faucet.  You turn the lever to the left for cold and right for hot.  My Bert, until two weeks ago had no difficulty.  Now he calls to tell me there is no hot water.  I notice he is pulling the entire faucet forward and my Bert is strong.  I can imagine the plumbing bill should he wreck it.  So as soon as we eat I collect the dishes and put them directly into the dishwasher.  I tell my Bert we are letting the dishwasher do its job so we can have time to play,  listen to music or dance.   Usually he opts for music and promptly falls asleep in his chair.  Many times he will just decide to go to bed.  That works for me too.

The Meander:   “The time has come,” the Walrus said,
“To talk of many things:
Of shoes–and ships–and sealing-wax–
Of cabbages–and kings–
And why the sea is boiling hot–
And whether pigs have wings.”

Thank you, Lewis Carroll for nonsense verses like The Walrus and the Carpenter.  I smile and think Alzheimer’s World is in truth Through the Looking Glass.  Perhaps my Bert is the Walrus and I the Carpenter.  Maybe the next plateau will be pigs with wings.

The Gem at the Toe of the Boot

Sicilians are proud of their culture, customs, cuisine and laid back ambience.  Whenever we have visited that part of Italy, sooner or later we will hear the oft repeated phrase or some variance of it: ‘Sicily is the gem at the toe of the boot’.  You will also hear the Mafia spoken of with some ambivalence.  It is either blight or an integral part of the culture and a benevolent organization that looks after its own.  What I know for sure is that the food is good no matter where you find yourself in Sicily.

We were only two days from Rome.  The last days of a long Grand Mediterranean cruise.  The Captain had announced that we would be cruising through the Strait of Messina.  With packing, last minute exchanges of contact information, selecting gifts for our wonderful cabin steward it was akin to him telling us he was going to brush his teeth.   I did not pay too much attention.  I had too much to do, plus the grand final Trivia contest was coming up and though I was the weakest link I hoped my team would take home the first prize.  We did not, to our chagrin.  Our cruise pals came to say they had scoped out a great place on the upper deck for us to sit and watch the scenery as we traversed the Strait.   Since they were also busily packing we decided that we would go to the special cruise talk about The Strait of Messina.  We would therefore get the information and be able to skip the lazy time on deck watching the shore and instead do the packing.

My disinterest went straight out the window when the presenter started with: “Have you ever used the phrase ‘between the devil and the deep blue sea’ or ‘out of the frying pan and  into the fire’ or, ‘between a rock and a hard place?”  We all laughed as we answered in the affirmative.   She explained that we would be cruising through the Strait of Messina, the birthplace for all those expressions originating from the Greek myth of Scylla and Charybdis. 

Scylla and Charybdis were two monsters who lived on opposite sides of a very narrow stretch of water.  They were the bane of Odysseus and his crew.  If in trying to avoid one monster they happened to sail too close to the other they really would be caught between a rock and a hard place.   Bumping up against either side would culminate in the same dire result, a watery grave.  I would hazard a guess that you would be hooked too with such an introduction.  The narrow stretch of water across which these two monsters lived is purportedly the Strait of Messina.

Packing could wait. We could not wait to get to our vantage point to sit and look for monsters and their homes as we cruised through the Strait.   We did not think about its reputation for very rough and dangerous tides forming whirlpools that could sink large boats.  No doubt this natural phenomenon was the explanation for the ‘monsters’ that plagued Odysseus. Neither did we enter the debate about the long proposed suspension bridge that would connect mainland Italy to Sicily over the Strait that was the hot topic of conversation at the time.  We were filled with the romance of the imagery of the Greek myth as we cruised through the land of mythology.

The journey is beautiful.  There is the blue of the Mediterranean, the green of the hills, the many picturesque villages dotting the coastline.  We watched a bus, a train and transport truck travelling across the water.  They looked like dinky toys but we could follow their journey.  There were many tunnels and we would scan the horizon waiting see where they would emerge.  Scudding patches of clouds would add another dimension and shade to the mountains as we sailed by.  The combination of nature, calm sea, new friends, and the aura of the myth made for a fantastic experience. From our vantage point all seemed peaceful and tranquil.

We made up stories about the people who may live in those villages, separated by mountains, seemingly isolated one from the other.   We were watching the mainland side and I wondered about the logistics of dating across the Strait.  “I am sorry dad, I missed the last ferry.  Can you come and pick me up?”  No wonder that for years that bridge has been a dream for so many.  If it ever comes to fruition, it will be the longest suspension bridge in the world.  Or as some refer to it, ‘a bridge too far’ when despairing that it will ever be built.

There was a moment of regret as we exited the Strait heading north to Rome.  We would be flying home from Rome via Frankfurt.  We were happy to be going home but after the serene, lazy sail through the Strait taking in the bucolic scenery, Rome and Frankfurt seemed discordant, a disruption of the peace, a too swift wake up call back to reality.

The Meander:  Cruising through the Strait of Messina was an unexpected pleasure.  There is one such treasure on every trip, cruise, and journey.  As in life you just have to say ‘yes’ when they come along.

A Sombre Tour

I did not sleep well the night before we landed in Dakar, Senegal.  I knew the reason.   We were going on tour to Ile de Goree.  So many of my friends had visited and told of the emotional toll it took as they walked through the House of Slaves. 

The House of Slaves on Ile de Goree is a Museum and UNESCO World Heritage site that commemorates the darkest period of man’s inhumanity to man – The Atlantic Slave Trade.

Goree was the holding port for slaves.   Of the approximately 45 million human beings who were torn from their homeland to be sold in the New World, nearly 20 million left from this place to face the treacherous Middle Passage crossing.   First begun by the Portuguese, this trade in human ‘cargo’ went on for three centuries from 1536 to 1848.

At the entrance to the Museum stands a statue depicting a female and a male slave.  They are bare breasted.  The woman holds onto the man her face uplifted.  The man’s hands are lifted high holding two parts of a broken chain.  He too looks upward.  There was an involuntary hush as we walked from the statue and through the doors of the Museum. The slave house had rooms measuring eight feet by six feet in which up to twenty persons, shackled by their necks and arms were held.  They were allowed one daily bathroom break.  Families captured together would most likely be separated here as they would be once they arrived in the New World.   If you came to this holding pen you had already lost everything including your name.   After all cargo was a numbered commodity not a person.   You got a number and your next official identity would come from the person who would buy you and therefore owned you.

Dare to show resistance, to rebel and you would be relegated to two small cells, so small you were unable to stand up.  You would be shackled, seated, with your back against the walls.  A hopelessness seemed to emanate from these two cells. Doom, bleakness, darkness, defeat, despair hovered in the air. My stomach knotted. I gasped audibly interrupting the guide.

“Sorry,”   I said.

“It is OK.  Many people cry in this place.  In fact Nelson Mandela was almost in the same place you are when he wept.”

We continued the tour and came to the Door of no Return or ‘last look’ door.  I took a picture, the same place President Obama had had his picture taken.   I cried.  I could not help it.  I imagined the heartbreak as each one realized that once they passed through this door to descend to the waiting slave ship it would be the last look they had of their homeland.   Now they were losing the last vestiges of belonging, of home.

They had lost their personhood when they were traded for guns, trinkets, food.  There was a formula to assess the value of this human ‘cargo’.  Children as tall as a man’s leg, females tall enough to reach a man’s chest no matter their ages were desirable, even more so if they were virgins.  Men were assessed according to their weight.  If a man weighed less than 60 kilos they would be taken but kept in a special holding room at Goree and ‘fattened up’ with beans to ensure a better price when sold.

The strongest, fittest, tallest men were the most valuable.    They may be worth a gun or two or more.  No problem, as these were going to bring a high profit when re-sold in the New World.  Also, they were the ones most likely to withstand the rigours of the Middle Passage crossing.

I struggled for breath as I listened to the atrocities, to the barbarism.  I was ashamed at the description of the ‘cargo’, the ‘goods’, the ‘numbers’.  They were human beings, mothers, fathers, sons, daughters, princes, princesses, chieftains, innocent children.  There was no nuance or balance to my emotion.   What I felt was raw, rough, deep anger.   This was beyond cruelty.  And this abominable trade lasted for over 300 years!

I had studied this bit of history; I had watched the movies and documentaries, seen the depictions in books and listened to erudite speakers.   No cinematographer, no author, no speaker or history scholar could capture the emotion of seeing this up close.   Walking through the Stygian gloom of The Slave House shook me to the core.   This was evil, pure and not so simple.

The tour did not end there though the rest seemed immaterial until we visited St Charles Church, built by the Portuguese in 1658 and the place where you got the best view of the House of Slaves and Ile de Goree.  I could just envision the pious and devout congregants leaving mass and looking at the island, maybe see a ship loading the ‘cargo’ and mentally counting the profits the ‘cargo’ would bring.

The Meander:   I wept when I first visited The Berlin Wall and wept with joy as we were at the re-opening of the Brandenburg Gate by President Bill Clinton.  I wept at Auschwitz and said a prayer for my late brother-in-law, Theo, who was held in Dachau. I weep for sadness and weep for joy but my tears at Ile de Goree were the deepest most hurting tears I ever shed.  I was weeping not only for the 45 million but also for the current 20 or 30 or 50 million living in slavery.   For these the chains remain unbroken.

Oh, by the way, we are Celebrating Black History Month!

It’s a Journey

Life is a journey is an oft repeated cliché.  There is truth in it.  What better way to describe the path we each travel from birth to death.

My Bert and I recently celebrated our 50th wedding anniversary.  I have been pondering our journey together.  There have been many journeys within the journey.  All began as unknown territory.

Journeys begin with hello.  They end with goodbye.  Some flash by like comets others are slow perambulations.   Some are sunlight, some are dark night; some give you strength, some make you weak.

Some you want to hold forever; some you can’t wait to let go.  Some make you laugh until you cry some only make you cry. 

There are journeys that you seek and journeys that are thrust upon you.

Some journeys lead you to people who become Lifeliners, friends forever.  Some lead to people who are fleetingly important for just a moment in time.

Journeys are moments, no matter the duration.   Some are landmarks of your life that help you find your soul, your strength, your spirit.   Journeys are multifaceted.  You juggle the segments, living them concurrently.   Journeys teach you to multitask.

Journeys are never straight, direct or easy.  Yet once you begin you must continue.

Some journeys seem never ending.  You stumble, ineffectual, distraught, full of fear, numb with disappointment.   You see chasms and dangerous cliffs, mountains that seem too high to scale.  There are twists and turns and unexpected obstacles.  These are the fragments that seem to be put in your path to frustrate you, only you.  Now comes the realization that this is really your journey, only you can walk this particular road, only you can make the decision which path to take.

 It is wonderful when you can take control of the journey.  You have solutions to problems, answers to questions; you dream the impossible and see it become possible.   You start out in uncharted waters diving into unknown territory and surprisingly make a safe, happy landing.   Yes, some journeys are wonderful, delightful and satisfying.

Each one has a life journey.  How you travel it is up to you.   You can accept the help of friends and family with grace.  You may show gratitude for the kindness of strangers.  You may be lucky to give love and have it returned twofold.  In the end your journey will be a reflection of your truth, of you.

More than 50 years ago My Bert and I like so many others have over the years, made a decision to walk our journeys together.    What a journey it has been and continues to be.  On this challenging leg the decision on how the journey unfolds is mine to make for both of us. I can make us both miserable; bemoan the unfairness of it all or I can embrace the privilege that it is to be a caregiver to the one you love and to whom you are the world.

My Bert and I are still saying hello to love, to life, to joy.  We embrace the moments and while they are fleeting for him and lasting for me they are our moments.  His journey and mine will commingle as they have for more than 50 years.    We will continue to walk in tandem and greet each day with hope that it will be a good day.

The Meander:   The day you are born is the day you begin to die.  That is inevitable, inescapable and undeniable.    As my Bert and I continue to say hello at the dawn of each new day I hope we will both be able to rise to the occasion and be ready to say goodbye at journey’s end.  In the meantime we will keep on with the journey.  We will live the moments and not look around the bend.    Why bother? What is there will come without fail.

Sweat and Small Stuff

Caregivers are the experts at not sweating the small stuff.  We have no choice.  Start sweating and you would morph into a walking swimming pool.  As we continue the journey I am often surprised at what gets thrown into the small stuff bin.  Most people would be sweating buckets at what we cavalierly designate as small stuff.

A diagnosis of dementia brings instant despair.   Thoughts are of death and the horrors of caring for a loved one you can only envision in the final throes of the terrible disease.    Contemplate possibly living for eight to twenty plus years with the spectre of death hanging over you and nothing, absolutely nothing is small stuff.

Having been handed life sentences for two, we gird our loins to tackle the issues as they come.

Among the first was the constant repetition of questions that drove me nuts.   Same question, over and over.   I would vary the answer just to keep my sanity.  Now: “What time is it?”  “It’s eight o’clock.”  One, two: “What time is it?” “It’s eight o’clock.”  If it continues long enough I may get to:”It’s nine o’clock.”   No problem: small stuff.

The hearing aids somehow get stored in the freezer.  Hah!  The bread knife is in the washing machine:   small stuff.  If my Bert ‘helps’ by washing the dishes and I have to go on a treasure hunt to find where he has put them away?  So what?   I give him a big smile and loud thank you.  He is happy, while I hope I am able  to find everything before bedtime.

A ray of sunshine comes through the window and I see a film of dust on the coffee table.  I choose to see the sunshine.  I will get to the dust later.   I have to cancel my hairdresser’s appointment because my Bert’s appointment is taking longer than anticipated, no problem, I will wear a hat.   My Bert exhibits an inappropriate sense of humour or lack of rectitude in announcing loudly in church or a restaurant: “I have to go pee.”  I used to be embarrassed.  No longer: small stuff.

The little irritants that used to be stressful are just that, little.  So he puts on his t-shirt backwards, shaves off his eyebrows, wears two different coloured shoes (I did not catch it in time) to his ‘club’:  Small stuff.

In great anxiety I consult our counsellor.  I am distressed as my Bert now has Obsessive Compulsive Disorder (OCD)!  Want to be bored out of your gourd?  Watch my Bert make his breakfast open-faced Gouda cheese sandwich.   For the rest of the world, and formerly for my Bert, bread, cheese, put one on top the other and voila – open faced cheese sandwich.  Now my Bert has to cover the entire surface of the bread, just so.  I have watched as he carefully rearranges the cheese pieces until the bread is completely invisible.  The cheese must not be too uneven which will result in complete dismantling  and new reconfiguration of the same piece of bread and  cheese pieces.  I have seen him look at the composition and not being satisfied take another slice of cheese to even out the masterpiece.  The construction must then be divided into four equal parts.  The precision with which that is done is awe inspiring.  The greatest architect would be tested to get it any more precise.   The yogurt, juice, banana, tea, are another post!  I reported all this and tearfully asked:

“What can I do about this OCD?” 

“Nothing.  This may be just his way to have some control in his ever increasingly uncontrollable world”  was the answer.   So, I did nothing.  Now I will even point out a small space without cheese which my Bert will immediately fix.  Hah!  Small stuff.

I asked one of my Lifeliners what constituted small stuff to her and she answered: “Everything.”   We all laughed but related well.  We wished everything was small stuff.  Of course, it is not.  We have learnt to de-clutter our caregiver lives by paying attention only to the essentials.   I determine the very important issues by asking:  Is this a case of emergency?  If the answer is no then it is just small stuff.   It’s self care or rather, self-preservation.  

The Meander:  As the journey continues you do recognize what is important and gain confidence in identifying those issues, new behaviours and changes that need immediate attention, help and/or professional intervention.   My greatest accomplishment each day is to see my Bert happy, teasing, being himself, inadvertently cracking a joke and ‘helping’ me.  All the rest is just small stuff.

Something New or There’s a Name for That!

Something new or There’s a Name for That

“Hey, why are you crying?”

“I love you so much.  You do not know how much I love you.”

“That’s no reason to cry.  I love you too.  I am happy because I know you love me, and I love you.”   My Bert is still crying, so I give him a hug and say: “I love you more than you love me.” Then the game begins.

The game is a couple tradition begun when we met and fell in love.  We would try to outdo each other in professing our love.  It was my Bert who first started to use distance measurements in the game.  It was: “I love you to the moon and back.”  Then I would top that.  We would signal the end of the game when my Bert said: “I love you to eternity” and I would counter with: “I love you to infinity”.  We would then segue into a debate as to which was the greater, eternity or infinity. That is yet to be decided.

Lately, both ‘eternity’ and ‘infinity’ have lost their meaning to my Bert but he still hangs on to distances.  It is not unusual to hear in the middle of having breakfast: “I love you fifteen million times around the world.”  Since mornings are busy and I have no desire to go around the mulberry bush a few hundred times I do not respond with distance but with a smile and say: “I love you too, double that.”    That is enough to elicit a laugh and immediate satisfaction.  This crying was an addition I did not like.

A few days later I go to get my Bert from his ‘club’.  I am met by staff who report that he has been crying for maybe an hour or more.  It seemed they were having a music programme and somehow a song reminded my Bert of World War II.  He became very emotional and started talking about his experiences as a child during the war.  He had spoken quite eloquently and very often about this but it was not accompanied by this type of crying.

I was asked to wait a few minutes while they continued to calm him as he had told them: “I do not want my Paula to see me like this.”  I waited.  The door opened.  I smiled at my Bert and he burst into tears.

I was flummoxed.  Not only was he getting emotional frequently, he was expressing an emotion that was beyond the dictates of the situation.  A happy baby on television could start a crying episode.

Then came enlightenment.  It was a scheduled home visit from our Geriatric Mental Health Counsellor.  She is wonderful, warm, caring and most of all very knowledgeable.  When she asked me if there were any new behaviours to report, I told her about the crying.  She immediately said: “Oh that is called emotional lability and is a condition that people with dementia experience.

“Emotional liability?” I exclaimed.   You may recall that I am that individual with a syndrome not yet named as evidenced when my doctor first diagnosed a Baker’s cyst and I in confusion asked: “Baker’s Yeast?”  Obviously my syndrome is intact as she smiled and said: “Not liability, lability.  Let me write it down for you.”  Smart woman, I thought.

As soon as the visit was concluded and advice given as to how to deal with the condition I went to the internet and found this:

“Emotional lability refers to rapid, often exaggerated changes in mood, where strong emotions or feelings (uncontrollable laughing or crying, or heightened irritability or temper) occur. These very strong emotions are sometimes expressed in a way that is greater .than the person’s emotions”

“Labile Affect, also known as Pseudobulbar affect (PBA) or Emotional Incontinence, is a disorder where the patient has excessive displays of emotion, or expresses emotions that are not congruent with the situation.”

It is exactly as my Bert demonstrates.

The Meander:  Daily, it seems I am made more aware of the incredible organ called the brain.  It is simply amazing.  Will we be able ever to unravel its intricacies?   I wonder if Artificial Intelligence, or those fantastic robots that can do anything and everything and which will replace or conquer us in the end, can experience emotional lability?  I dare to think that the operative word is ‘artificial’ and it will ever be thus.

Birthday Conundrum

Our next port of call was Tabuaeran, Fanning Island in Kiribati.   Tabuaeran is the same as Fanning Island in Gilbertese, an official language of The Republic of Kiribati (pronounced Kiribash).   Needless to say, by the time we tendered into port I was already confused.   We got the information overload from a Mr. Fanning himself after whose ancestors the island was named.  It was a delight to travel with him and his charming wife and to attend his most informative lecture.

Fanning Island is like Pitcairn Island, out there in the Pacific Ocean almost in the middle of nowhere.  A beautiful atoll, a ringed shaped coral islet surrounding a central lagoon, and shaped like a foot. In fact Tabuaeran, means ‘hallowed footprint’.  There is no electricity, no piped water, no mountains and no jungle.  It is low lying just above sea level so global warming is a definite threat to its existence.   It would only take one big tsunami and pfftt, no more Fanning Island.  Residents number less than guests on ship (1900) as it is estimated there are only 1200-1500 people living there.   Its land area is approximately 13 square miles. The lagoon is 426 square miles, 7 miles wide and 50 ft. at its deepest.

Canned meats are considered delicacies.  We were met by a singing, dancing troupe of both men and women dressed in grass skirts.  There were a few older people dressed in original coconut fibre clothing reminiscent of the similar sartorial choice of Nuku Hiva.   The most significant crop and export is copra so coconut palms abound.  They appeared to be wearing coir welcome mats including headgear.  This analogy is quite appropriate as they are very friendly with a welcoming smile.  I took one look at the dress and immediately felt scratchy and HOT.   Employment and another export come from large seaweed beds owned by a conglomerate that sell the seaweed to spas and health and nutrition companies worldwide.

Diet is fruit, a few root vegetables, fish, pork and sometimes chicken.   Breadfruit is a staple, and we were introduced to a plant from which sugar is made by boiling the sap.

There are three nurses on the island to look after medical needs including dentistry and should there be a serious illness it is a long boat ride to Christmas Island 160 miles away for the nearest medical Centre.  Supply ships come every four months and if you should get really ill after one has just left then it is likely you will die.  The children seem well cared for and happy. 

We did the grand tour, crowded on three wooden benches in the small and only diesel truck on the island.  There were lots of shell jewelry and carvings for sale.

Now to explain my birthday conundrum:  Prior to 1994 The International Date Line (IDL) ran right through the middle of The Republic of Kiribati. That was a problem as the East and the West were on different time zones and if you woke up at 7:30 a.m. in the East, the next atoll over would be waking up with the same sunrise but it could well be 26 hours later or prior? It also meant that business could only be done on four days of the week. The Governor declared the IDL would be adjusted to bring Kiribati into one time zone.  That declaration resulted in the Eastern half marking Friday, December 30, 1994 and waking next day on Sunday, January 1, 1995.  This explains why Kiribati is the first place to celebrate New Year’s Day, and why the IDL jogs far right at Kiribati.  Help!

But that’s not all.  These islands also sit at the equator, so as the ship cruised along to stop at Fanning Island and carry on our South Pacific sojourn it just so happens that my birthday fell right in the middle.  So there was one day I celebrated my birthday, and soon was celebrating my birthday again and of course, there was the Neptune/Poseidon ceremony as we asked the God of the Sea to grant us safe passage and permission to cross the Equator.  Oh what a mess!  Oh what fun! Oh what a conundrum!

On my birthday we crossed the Equator so I was in both the Northern and Southern Hemispheres.  We crossed the IDL twice so I was in the East, West, North and South of the world on my birthday.  While I tried to wrap my head around the puzzle my Bert just happily went about asking the ship’s staff what time and what day it was according to ship’s time.  He found it amusing and had no intention of figuring out anything.  It would all right itself somehow, he knew.  Sure it did, but five passengers had birthday celebrations two nights in a row neither older nor younger than a day prior or later?

The Meander:  There were times we looked at our travel account and felt we should put it to better use. Such thoughts died immediate deaths. Travel always won. We would not have it any other way.  On these cold days, I miss it so much but the memories are alive and well in my head, my heart and my travel journals.  We are grateful. No regrets!

A Golden Night

Friday January 11, 2019 I woke up very early.  The weather report said it was -12 Celsius with a wind chill of -20!  Brrrrrrr.  But this is Canada in winter.

January 11, 1969 was on a Saturday.  When I awoke then it was already 28 Celsius with a projected high of 30!  But this is Jamaica in winter.

The coincidence did not escape me.  Fifty years married and a 50 degree difference in temperature.

On Friday, January 11, 2019 my Bert and I celebrated our 50th wedding anniversary with 50 close friends.  It was a Golden night, a night filled with love and Light.

The setting was special, decorated in gold and white.  The dinner was marvellous. The toasts were heartfelt and warm and so eloquently delivered.  Best of all was the love that seemed to permeate every corner of the room.

I saw friends making friends.  I saw smiles, heard joyous laughter, saw caring glances and chuckled at the comments made at our ‘before’ and ‘after’ photographs.

It was a night to reminisce.  Fifty years is a long time together for any couple.  During that time we loved, we argued, we worked, we had successes, we had failures, we gave, we received, and we brought two wonderful children into the world.  We mourned, we hoped, we laughed, we always laughed.  We travelled the world, we helped, we got help, and we supported and received support.

It was a celebration of friendship.  Throughout our lives my Bert and I have been blessed with the most wonderful friends.  We are so grateful for that so decided we would do our best to have some of them share in our joy and to let them know how much they mean to us.  They were representative of so many more whose influence and guidance and love have helped to make us who we are.

It was a night of family and friends who are family in every sense of the word.  There were some we missed, but who were with us in spirit.  Our best man at our wedding could not be with us in person but he was with us in song as his recording of The Prayer was played.  At our age some who wanted to be with us could not for a variety of reasons but we still felt their love.

The highlights are many.  The wonderful paean from our dear friend; the tribute from our beloved son; the reading of Sonnet 44 Elizabeth Barrett Browning ‘s  How Do I Love Thee.

However, the greatest moment of sheer immediate and spontaneous laughter happened when we attempted to renew our vows.  Our family friend and Minister had in perspicacity and necessity reduced the vows to a simple: “…Bert I ask you, do you still want to be married to your wife Paula?”  Bert looked at him and said: “Let me think about that.”  The laughter filled the room.  I was in stitches as I thought: “That’s my Bert.”  As usual, my Bert set the mood for the rest of the night.  It was laughter, joy, Love and Light in the company of family and friends.

The Meander:  My Bert and I opened the dancing with ‘our song’ Unchained Melody.  As we danced, my Bert held me close and sang the words throughout to me.  In our eyes was only love. Love endures.