Blog

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.

Resolutions

No doubt resolutions are being made left right and centre.  Resolutions are being broken even as I write.  Resolutions made at the stroke of midnight as 2019 dawned are already in the trashcan of what might have been.  I rarely make resolutions even though I see the New Year as an opportunity to begin anew, to look forward, even to dream and to plan.  However, to continue my ruminations on 2018 I have decided to take a leaf from Melinda Gates’ book and choose one word to guide me throughout this year.  It has been reported she does that and since I am not that enamoured by resolutions this seems a good alternative.  I have chosen ‘Light’ to be the word that will guide me throughout 2019. I have decided to walk in the light to see the light and whenever possible to be the light.  It sounds laudable but  I have to acknowledge that this may be the hardest objective I have ever set.  Yet at the same time I have some confidence that it is the one I may be able to attain.

So far keeping resolutions has not been my forte.  I am going to lose weight is a recurring theme which starts with gusto and swiftly ends with gusto – usually with the Valentine chocolates.  I am going to start and stick to an exercise regimen.  Yes!  Except that I have not decided which year this is to begin.  Since I make the resolution at midnight I should begin on New Year’s Day.  If I have stayed up until midnight I am too tired to start that day, and by January 2nd the enthusiasm has curbed to the point of lethargy and there is a book somewhere that is calling me.  How much more civilized to exercise in such a peaceful, restful, and for me the necessary occupation of reading a good book while swaddled in a soft throw and curled in my favourite chair.  The mind needs exercise too!

This year I am transitioning from the ridiculous to the sublime of resolution making.  No resolutions, just   a word and determination.  Walking in light, seeing the light, being the light is incredible conceit, a pipe dream, or maybe setting me up for failure.  Yet I think, even though it is only day five, that I will succeed better than I have ever done before. 

Living with a loved one with Alzheimer disease is living in darkness.  Caregivers know that because until this we have lived in light.  This is my first purposeful plan that is not me focused.  This is for my Bert.  My Bert needs light.  He needs to see the light outside, inside and see me as light.  His happiness is my light, my happiness is his light.  Caregivers live for two.  I want to shine a light for my Bert, for other caregivers and everyone I meet.  Still I am being selfish as I believe I will benefit the most if I succeed.

This is also the first plan that will perforce depend on outside help.  It is family, Lifeliners, friends, counsellors, my support system who will walk in the light with me, seek to see the light with me and encourage me in my efforts to be the light.  They know and they care.

The Meander:   “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.” — Helen Keller

This is from someone who knew the dark intimately.  I wonder how invincible I can be against Alzheimer disease.   Then again it is not a ‘difficulty’ it’s a disease. I do not have to be invincible.   Come walk in the light with me. 

Ruminations on a Year-2018

We look at the world; the world looks back at us.   Some call me brave.  Brave?  Far from it but I do accept responsibility.  They call us a loving couple and that we are.

“Oh, Bert looks so well, you would hardly know he has Alzheimer disease”.  If only they knew.  I choose to accept the compliment on behalf of both of us, after all carers get so little thanks, if any.

“How can you write so positively about your situation?”  I choose to do so.  No, I do not have a Pollyanna complex.  Rose coloured glasses obscure too much.   I have to see clearly not just for me but also for my Bert.  I hurt.    Of course I do.  However, I am grateful that I do see the glass half full and have been blessed by an offbeat sense of humour and with a partner who makes me laugh.

“You are a Saint.”  Hah!  Leave that sobriquet to Mother Teresa.  There are times when I must be more akin to the devil incarnate.  Have I experienced bitterness?  Yes, but as Norman Vincent Peale said: ”Change your thoughts and you change your world.”   Sure I will have negative thoughts; they come with the territory, but I hope they are not bitter.

In 2018, the learning curve reached a peak.  We sit on a plateau not knowing when the change will come.  Will it be again upward or will it be a downward helter-skelter tumbling into the abyss?   More than likely it will be a combination of upward learning as we tumble ever downward.  I choose to let the future be, holding on to the present and refusing to be weighed down by the past.  2018 taught us we can live, differently yes, but live nonetheless.  This is neither bravery nor sainthood, just accepting the things we cannot change.

In 2018 I learnt banging my head against the wall only results in a headache. Therefore I count to ten or maybe twenty or maybe…  I must be long past a million by now.

In 2018 I learnt that I am actually quite pragmatic as I know I have to acknowledge the darkness.  I have to grant how awful, how evil, how depressing this disease is.  Yet I must also look for the infinitesimal spark of light within that darkness.

2018 taught us to live by smalls, like small mercies, small moments, small comforts, and small miracles.  We learnt to wonder at the beauty of one song within the symphony, one iridescent droplet after the rain, one star within the constellation.  In a shrinking world our universe expanded.

In 2018 I would sometimes awaken with tears streaming and fall into a chicken and egg reverie.  Are these tears of joy for a rare good night’s sleep or is the sadness deep in my soul finding release?  I try to unravel the conundrum while in my suspended animation shifting between waking and sleeping I endeavour to decipher the meaning of the tears.

The yin and yang are played out in every way thinkable every day.  It seems that happiness and sadness are always holding hands, walking in tandem and interlaced with uncertainty.  What’s next is an ever present question and the answer is always we do not know.

The Meander:  As a new year dawns I promise myself that when I see myself sliding into the slough of despair I will ponder the imponderables:  How can there be darkness if we do not know light; how can we know good if there is no evil.  I can be joyful because I am intimate with sadness.

Holiday Wish

Early in the month I decided that I would not write about anything to do with dementia for this post.  Yuck!  What a downer.  So I got out the travel journals.  I read a particularly funny episode to my Bert.  He does not remember but it was good enough to elicit a response.  With a look of wonder he said; “We did that?” and declared that it was ‘good’.  I was still not inspired.

Then early this morning on my way to the kitchen to put the kettle on  I glanced at the dancing coloured lights on the balcony roof and stopped as my spirit lifted.   It was still dark out and the only light inside came from the Christmas tree and decorations.  Part of our Christmas decorating is a laser light placed on the balcony so that it covers the ceiling and one wall with dancing lights in ever changing combinations that appear to be moving, twinkling stars. 

“Bert, come here.  Come look at the lights on the roof.”  I pointed upward and my Bert laughed with delight.  His eyes opened wide with wonder.  As the shapes shifted, as clusters became individual little stars, as the green and blue, and red vied to outshine one another, Bert went right up close to the window and just laughed aloud again.  “They are really pretty”, he said.  I agreed and laughed along with him.

There was a knock.  Our helper was here to get my Bert ready for the day.  Reluctantly he turned and went to the bathroom. A memory inserted itself.  I remembered how my Bert would be ecstatic at the dawn of the Winter Solstice.  Every year he would rub his hands together and laughingly declare: “Hah, tomorrow we will have about two more minutes of daylight.”   It was never the longest night but the shortest day.  My Bert loves light and this holiday season.  He greeted the march to longer daylight with the exuberance of a child.

My holiday wish to you along with health, happiness, joy, love is that you will encounter many small miracles.  May sunshine light your path and happy moments be your constant companions throughout the coming year.

HAPPY HOLIDAYS!

The Meander:   Every night before bed my Bert laughs with the lights. He will do that tonight. Each time it is a new experience. That is good. This morning my Bert and I held hands and for just a brief moment in time we lived among stars. Worth repeating and we will.

Penguin Affair

Our love affair or maybe I should say my love affair with penguins did not have an auspicious beginning.

Imagine this.  It is February 13th. I am not subject to triskaidekaphobia.  The number 13 is just that.  It was  Ash Wednesday, the middle of summer.  Yes, we are almost at the southernmost end of the world though that would come the very next day in Ushuaia, and it is bitterly COLD.  We are in Punta Arenas,Chile.  Everyone is shivering and bundling up in all kinds of layers.

I want to see penguins. The ship’s penguin tours to Magdalena Island were all cancelled because of the inclement weather.  We had not signed on for any, rather preferring to go on an overland tour to the Penguin Sanctuary of Otway Sound with a private taxi/guide.  It is a smaller colony of some 60,000 Magellanic penguins spread over quite a large breeding ground and park for public viewing.

We bundled up and went ashore even as the weak sunshine turned to rain.  So what, we thought, we are only a hop, skip and jump from Antarctica so summer can be wintery.  We were very lucky.  There was this taxi driver who seemed to be just waiting for us.  I told him where we wanted to go.  He looked at me with a slight air of bewilderment and said: “It is wide open space and windy today.  Here in Punta Arenas, even in summer we can get rain, sleet, snow, ice and even a bit of sunshine in a matter of hours.  Today is not a good day to go to Otway”.   I said with the confidence of the ignorant.“Well, we can stand a bit of rain and we are Canadians, we know cold weather.”“OK.” He said and it sounded as if he swallowed “but it is your funeral.”

We negotiated a price and felt very simpatico towards eachother.  Bert suggested we go to his favourite bar on our return for a drink. If I was clairvoyant I think I would be able to read a bubble over Carlos’ head saying: “You’re going to need it!” However, we were becoming fast friends.  Carlos told us his wife taught English and would love to speak with us to get some practice and would we mind if she came along on the trip.  Sure, no problem.  Carlos called then drove home and there was the beautiful Ximena waiting.  She had two very heavy overcoats, both belonging to Carlos and said:  “These are for you and your husband.  There is a cold wind out at the colony and you are going to need these.”  How thoughtful.

Off we went. The rain turned to sleet.  We arrived at the Sanctuary with driving sleet and a biting wind.  The attendant asked:“Are you sure you want to walk out to see penguins in this weather?”  I answered: “Oh, yes.”  She shook her head, told Carlos to go on,that we could pay her when we were leaving and waved us in.

I did not think about this being somewhat foolhardy until Carlos opened the door and Ximena gave me a coat.  We were the only visitors.  A blast of wind rocked us as bits of ice hit our faces head on. What a walk!

Penguins!  They approached us all ready for the formal ball!  A group of about seven came toward us.  I crouched down, and mindful about not touching them, spoke softly to them. They spoke penguin and I spoke English and some Spanish and we communicated.   They came right up to me and followed wherever I went.  One came close enough to peck at my hand.  Carlos was quite surprised how comfortable they seemed with my presence and joked with Bert that I must speak penguin.   However, even with the extra coats, both Bert and I were shaking with the cold.  I looked at Carlos and he was not too happy either.  With regret I said goodbye to my penguin companions.  They followed me as we walked away.  I had the biggest closed mouth smile as I thought my teeth would freeze if I opened my mouth.

I approached the attendant with the fee ready.  She looked at me and said: “Senora, if you were so determined to see our penguins in this weather, you don’t owe anything.  Was it worth it?”   ”Oh, yes it was a short but sweet encounter, and they came to me.  It was a love affair.”  She smiled, shook her head and handed me some pamphlets.

Ximena, who had wisely stayed in the car, invited us back to their home saying we needed to have a hot drink.   At the mention of something hot Bert forgot the bar date.    We accepted and were soon chatting animatedly with Carlos and Ximena , their children Carlos Jr, Gabriel,Stefan and Paulina.  The tea was ambrosia and a panacea.  They offered a meal but that we politely refused citing the plenitude on the cruise ship.  I could not stop talking about my penguin affair. A Good English lesson, I thought.

The Meander:  I fell in love with penguins on that miserable day.   I have seen them in South Africa, In Ushuaia, The Falkland Islands, all over.  I have penguin memorabilia.  February 18th in Puerto Madryn, Argentina we went on tour. It was a marvellous summer’s day.  I was surrounded by penguins.  If only I had waited!   No, Otway Sanctuary remains my penguin first love.  Why?  As the only visitors the experience was personal.  It also had Carlos and Ximena and their kindness.   Gosh, I love to travel.

Honest Mistakes

Oh, the stigma of having a mental illness!  Once we got the diagnosis of dementia – Alzheimer Disease my heart sank and I thought: “How do I cope with a mental illness?”  It was an honest mistake.  Dementia of which Alzheimer Disease is the most prevalent form is NOT a mental illness. Yet, I too immediately classified this brain disease as  mental illness.  It was easy for me to grasp the outcome of a stroke, or brain aneurysm, but deterioration of the brain without such a direct cause was suspect and to be shunned.  Yes, we have come a long way in recognizing what mental illness is but there is still a stigma about it and since dementia concerns the workings of the brain it all gets lumped into that basket of things not understood.   It comes down to being ignorant, not knowing, a state we dislike, so we stigmatize.

Persons with a mental illness are no longer shut away in an asylum, or ‘madhouse’.  Both understanding and treatment have advanced where we now recognize mental illness as just that, a mental illness.   On the other hand dementia is a physical illness.   Although this disease is being studied and research abounds there is still not a definitive cause for the more than 120 types of dementia that have been identified so far.  Technical and medical terms like beta-amyloid protein fragments usually referred to as plaques and tau or tangles are batted around.   I now can bat around such terms with understanding but they are the mechanics of a disease that attacks the brain and leads to death.  You can begin to understand the complexity of the disease when examples include Lewy Body, vascular, frontotemporal, Parkinson’s disease and even Cruzeveldt-Jacobs Disease which is the human form of what is commonly called Mad Cow disease.  Naturally the latter is an example not trotted out too often as the word ‘mad’ is a red flag to any raging bull or misunderstood brain disease which can lead to even more stigmatization.

Another honest mistake is to think that all these numerous forms are just a different kind of Alzheimer Disease.  Like Alzheimer Disease these are types of dementia.  In fact Lewy Body has its own abnormal protein called alpha-synuclein buggering up the works in the brain.  Each one identified has its own pathology and just to make life more difficult there is also mixed dementia which is now recognized as being more prevalent than previously thought.  That is usually a diagnosis which is a combination of vascular dementia and Alzheimer Disease.   It signifies too that the two main engines of our body, the heart and the brain are both compromised.   I think since research is ongoing we could wake up one day and hear that ‘mixed’ is not only two, but three or four or more ganging up on one brain.

My Bert is a classic case of Alzheimer Disease.  The last doctor told him his blood pressure was better than many younger people, to which Bert replied:  “I am only 19.”  I was not going to correct him to say he was a toddler in the brain department!   Yet, it is true that my Bert is healthy.   He eats well, has not put on or lost weight.  Whatever negative symptoms he exhibits, and there are many, all stem from those darn plaques and tangles that are filling up his brain, interfering with the memory and communication processes.  Messages are confused, delayed, misunderstood or not understood at all.  We are both frustrated.

It is uncharitable to stigmatize anyone for any reason.   We have had the honour to meet and become friends with a most accomplished, outstanding citizen, and the epitome of a gentleman who had actually been institutionalized in a mental health facility twice.  He was completely cured and felt enormous gratitude for the professional help he received.  He acknowledged the fact of having a mental illness.  He knows the difference between that and dementia.  Many of us do not.  However we can learn.

The Meander:  A doctor making rounds in a Mental Health facility sees a patient writing furiously.   “What are you writing?”  He asks.

“A letter.”

“Oh, who are you writing to?”

“Myself.”

“What does it say?”

“How the heck would I Know?  The postman hasn’t come as yet!”

A doctor making the rounds in a Memory Care facility sees a patient painstakingly forming letters on paper.

“You seem to be writing a letter.” He says.

“Yes.”

“Are you writing to a friend?”

“Yes.”

“What does the letter say?”

“What letter?”