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.

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.

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.

I Looove Lettuce!

It took this snowbird fleeing our Canadian Winter to make me realize I love lettuce.  The year was 1996 when we fled to Indonesia to spend three unforgettable months in Bali.

We lived in Sanur village within walking distance to the beach and its many famous restaurants.  Kuta Beach, only about a half hour away, is the more famous one. Crazy nightclubs crowded streets, restaurants, shopping, tourists, and the place to party and have fun.   Sad to say Kuta Beach was also the site of a terrorist bombing on October 12, 2002.

It was in Bali that we met our Dutch son, Duncan (See post: A Most Unusual Birthday) and together we discovered Bali.  We had some remarkable experiences among which were:

Attending a funeral rite including the burning of the body;

Visiting Pura Besakih, the Mother Temple, while an important religious ceremony was in progress;

Being served tea on the beach in raised, open, luxurious Japanese tea house  tent-like structures at the magnificent hotel in Nusa Dua;

Getting a spontaneous invitation to an afterbirth ceremony and family celebration;

Getting up close but certainly not personal with a Komodo dragon on Komodo Island;

Watching the amazing carvers in Ubud bring out the most intricate art from pieces of wood;

Dining on fresh caught fish at Jimbaran Bay.

Our travels took us everywhere.  Duncan was our intrepid driver, bobbing and weaving among the multitude of motorcycles carrying entire families on one small scooter.

But back to lettuce.  When we had arrived in Bali we were given brochures full of information for foreigners.  They stressed drinking bottled water and not using ice that was not made from purified water.   In fact, in our apartment, though there was a fully functioning bathroom, we were brought pitchers of boiled water every morning to brush our teeth.

In Balinese culture there are the sacred elements of which water was perhaps the most revered.  It was the lifeblood, the cleansing power, a major highway to Nirvana.

Every rite involved water.  Everything was done by, in or near the water. Everything!

All three of us, as seasoned travellers had not drunk any water nor ate anything that was not peeled, boiled or cooked. Sure there were ‘western restaurants’ and very upscale hotels which we frequented.. However, even in those establishments I could not and would not eat anything raw. Thus for three whole months I did not have a raw salad. You can cook tomatoes, pickle cucumbers and boil all kinds of vegetables but, as far as I knew no-one yet had discovered a way to boil lettuce.

We had arranged to stop in Hawaii for two weeks on our way home.  The plane landed.  We got to our hotel and as we registered I asked about restaurants with a salad bar.  Hotel receptionists are used to a variety of interesting questions.  I was told that there were quite a few restaurants in Honolulu with salad bars.  I smiled politely and told him that after unpacking we would come for directions to one of those restaurants.

After a 12 hour flight from Denpasar to Honolulu we were tired and hungry so it was not long before we were ready to go out for dinner.  We went to the Reception.  There was someone new at the desk.

“Hi. Would you direct us to a restaurant near…”

“Oh, yes, Ma’am….

“Excuse me.  It must have a salad bar”

A curious glance then: “Sure, ma’am.  Do you want seafood, a steakhouse or one with local specialties?”

Bert:  “We are not fussy.  Any of those will do…”

“But it must have a salad bar”, I interjected.

The look has gone beyond curiosity. “Should there be anything special on the salad bar”?

Now I am wondering about that question but decide that maybe she thinks I am a vegetarian.

“It must have lettuce.”  The woman behind us giggled.  The Receptionist’s eyes blink, no doubt to contain her own laughter.  I reviewed the whole conversation in my head and thought perhaps they would decide to ask this crazy woman who seems to have an abnormal fixation on lettuce to vacate the premises.

I laughed and said: “I have not had lettuce in three months and have discovered that I really do love it. There was an undertone of relief as with a smile she said: “Then we must get you to a salad bar right away.”

The Meander:  Prior to our Bali winter lettuce was just lettuce. I ate it.  It was a triviality. However no food has ever tasted as good as that lettuce on that salad bar.  We take so much for granted that sometimes it takes loss for us to appreciate what we have.

 

 

For Caregivers: All Mothers!

Happy Mother’s Day to all mothers!

To those who never gave birth but are mothers of the heart

To those who are mothers on the second shift

To caregiver mothers who are mothers to husbands, mothers, fathers, aunts, uncles, siblings, friends grandparents, partners

To men who are caregiver mothers to wives, mothers, fathers, siblings, grandparents, friends, partners.

 

 

Today, I want to be mother to all caregiver mothers, to embrace you, to give you hugs, to let you know that as a caregiver mother I do know the sorrow, the joy and love of being a caregiver mother.

Here’s to another perfect day of doing and an infinitesimal token of appreciation for all we do.

 

 

Happy Mother’s Day!

The Meander:  Every week I look forward to receiving the Alzheimer’s Weekly & Dementia Weekly Newsletter.  It is filled with information on the many forms of dementia, new research, caregiver support and ideas to ease our special journey.  It links to other publications and organizations. Each issue begins with a Thought for the Week similar to the one reprinted above.   I must confess that in addition to the articles I do look forward to these gems with  anticipation.

Thank you John Wooden.

 

Baker’s Yeast…er…Cyst

My foot was elevated on a stool, cushioned by a pillow.  The entire leg was swollen with the knee looking suspiciously like a substitute for a basketball.  The ice pack was enclosed in a small towel resting on the knee.  The pain was, well I have given birth so I will not say it is the worst I have experienced but it comes a close second.

Everyone says exercise is so very good for you.  In my case exercise is hazardous to my health. My used to be dear friend chortled and proclaimed: “You are the only person I know who could bust up a knee slipping from a stationary exercise bike.”  That is true.  I did not fall off.  One well shod, sneakered foot slipped out of the stirrup and all my voluptuous avoirdupois went onto one leg and landed me in painsville.

I iced the entire leg and took myself to the doctor. I was sent for X-ray and a number of ultrasound tests including DVT (Deep Vein Thrombosis).  That one gave me pause as you are talking probable serious repercussions if there is a clot.    My doctor called as soon as she had some results to say: “I am happy to tell you that there is no clot, however you have a Baker’s  …ist (mumble) behind the knee.”

“Baker’s yeast?”  I asked incredulously.

“No, no, it is called Baker’s CYST”.

I had never heard of this.  She told me she would be referring me to an Orthopaedic surgeon and in the meantime I was to follow the RICE formula.

I was surprised how many people knew about Baker’s Cysts, how many had had it or knew people who had.  I had read up on it and was praying that it would heal itself as can and does happen.  One acquaintance gleefully informed me that she had had the needle aspiration and showed me the length of the needle that in my apprehensive state seemed to be at least a foot.  Yikes!

As is always the case, my Lifers were among my best support.  Outpourings of love and practical offerings and advice came from each one.  I emailed my thanks, explaining that I was being good and that RICE was helping. Jay wrote to ask what RICE was. I explained it was an acronym for Rest, Ice, Compression, Elevation, the method used in First aid to relieve pain and swelling and to promote healing and flexibility. Here are excerpts of messages which followed:

Jay: “I thought you were eating the rice…I don’t think my neighbours, knew that either …  her doctor put her on a rice diet and she asked me if I had any rice, actually she was on rice and bananas and I wonder if her rice was the same as your rice  haha. I gave her some rice and never gave it a second thought, but now I wonder 

Me: “Now, that’s is hilarious!  Given my experience with aches and pains – rolled ankle, banged up elbow, I am quite familiar with RICE.  By the way I also like rice.  Did your neighbour have any swelling, inflammation, or sore joints? If yes, then it is not the diet but the acronym.  If no, then perhaps her doctor did mean her to eat rice.  Will you ever know for sure?  HaHaHa.” 

Jay: “Might even be funnier than that …  she had diarrhea in a bad way for nearly 6 weeks!  Bananas and rice was  prescribed.” 

Me: “I am almost falling off the chair….definitely the diet​…bananas and rice for diarrhea!” 

Out of curiosity, I look up R.I.C. E. on the internet. I finished falling off my chair as in the middle of explaining the first aid procedure the next heading in the stream was varieties of rice;  It informed me that in the US long grain rice is used for boiling, quick cook products and soup; short grain for cereals, baby food, beer and liquors.

This was followed immediately by ‘do not put ice directly on the skin’  then without skipping a beat or establishing a discernible logical connection the next heading was Inflammation fighting foods  which did NOT include rice but had broccoli and wild caught salmon in the mix. I thought, here is a complete dinner and was feeling quite full and drunk too from the long grain liquor when I was suddenly brought back on topic by the next heading: what is rice used for in first aid and was back to athletic injuries and the formula. 

You just cannot make up stuff like this.

The Meander:  Our intrepid Jim has suggested Jay and I do a skit or work on a routine for You Tube. Jay is wondering if my rice formula is holistic. I want to know if the bananas and rice is served as a smoothie.  We are all having fun with this….that’s GOOD!

 

Caregivers are nurturers in reverse

Caregivers are nurturers in reverse.

Think about the euphoria when your baby  was born.  You held the tiny mewling human being with love and tenderness and you started to plan and to envision a future full of hope and dreams.

This life is entrusted to you, to care for, to direct, to teach all that is necessary to provide a foundation for a life yet to be lived.  You could be holding the next Prime Minister/doctor/teacher/entrepreneur. The possibilities are endless.  You try to conjure up the passages of life: Graduation, marriage, children, success in whatever they choose to do in their life.

Now consider dementia.  You have achieved so much.  You have the children, have enjoyed a satisfying career, have made a name for yourself as a businessman, have loved what you did as work or study.  You have enjoyed pleasures untold, participated in events that are uplifting, awe inspiring. You have lived.  Then comes dementia.

As a caregiver you are given this awesome task to begin  the nurturing process again. To teach, to train, to protect, to guide, and to do the things that you did as you cared for your child.  You remember how to kiss away the hurt.  You plan your life to be there, always there.  You live in two realities.  You think and see and hear and plan and live for two.

When your child is born you look forward with hope and joy.  When your loved one has dementia you look forward with trepidation.  Your child is a beginning.  Your loved with dementia is an ending. You have the complete responsibility for both.  You anticipate the next step with both.  Your parental and caring skills are in high demand for both. The difference is that one was your child, the other is your husband, partner, mother, father, sister, brother, friend. You try to process that and realize the full extent of the chasm that  yawns between the dreams for your child and the imagined nightmare from this time forward.

Those stages you anticipated with love is a progression with your child that you see through 18 years or more.  Your loved one also exhibits stages of progression of dementia which you could be living through for 18 years or more – still with love.

The Meander:  Acknowledging the reality is the first step to coping.  Then look in  your loved ones eyes. See the absolute trust they have in you. Know that absolute trust brings absolute responsibility.  You are their world. Know that you are the most loved person in the world. Awesome.