Deck Encounter

We sat on deck, looking out on a calm sea that shimmered in the moonlight.

We were six, two couples plus a mother and adult son.  We had met on a cruise eight years before and we had been travelling together ever since.

We were a compatible lot and conversation never lagged.

This night was the Captain’s welcome reception and dinner.  We had all dressed up, joined the line to meet the Captain, drank the champagne and had a very nice dinner. 

We sighed in contentment. 

We were rehashing the jokes of the entertainer, a comedian, who was quite good when a young man came in sight.   Wow!

He was tall, dark, and handsome with full sensuous lips, deep blue eyes, a high forehead from which his hair fell in soft waves to his shoulders.  Yes, all the clichéd descriptions of the hero one could find in Mills and Boon and Harlequin romance novels were rolled into one eye-popping package and walking towards us.  He was the epitome of male pulchritude.

“Oooh! I would never say no to any request from this one!” Pat remarked sotto voce.

“MOTHER!” exclaimed Francis in such a shocked voice we all burst into laughter.

The young man turned and said: “That must have been a good one.”   With uncharacteristic boldness I said: “Come over and join us and we will share it with you.”

“Thanks, I will.”  He pulled out a chair came over and said: “Hi, I am Sean.”

We introduced ourselves.  Gary, the only smoker in our group had noticed the cigarette case Sean had pocketed before he accepted our invitation.  He suggested they have a smoke.

Sean accepted and he and Gary moved closer to the rail and ashtrays.    We surmised Sean had come out for air and a smoke before returning to his date/fiancée/wife/partner.

Cigarette done, Penny, Gary’s wife told Sean about our plans to go listen to the Jazz trio in the Piano Bar.  She invited him to join us.

There was a slight hesitation before Sean confirmed he was waiting for someone but maybe they would accompany us to the Piano bar also, if we did not mind.

Pat, our master of sotto voce whispered to Penny: “I should have known that someone who looks like that would be not alone.”   It was said with such a mixture of regret, desire and a hint of peevishness that Francis uttered a groan.   

The conversation flowed and then Sean told us he was waiting for his parents.  He explained that they all had early dinner together but his parents liked to go to relax with a cocktail before catching the later show.  He was quite happy with that arrangement because then his mother could pretend he did not smoke and he could have a cigarette without her telling him what a nasty habit it was.

“I am with your mother.  Gary is the only smoker in our group and he gets the ‘nasty habit’ lecture on a daily basis even from the former smokers here.”

He smiled and said: “Well, then if you tell me not to smoke, I won’t.”

Before I could reply, a door opened and the first people coming from the late show drifted towards our corner.  Sean got up, went towards the door and said:”They’re coming.”

He looked downwards, we looked up.

Coming towards us was the most striking couple.

Little people.  Very   Little   People.

Both were resplendent in their formal wear.  Both had the biggest smile when they saw Sean. Sean bent down, hugged both and said: “Mum and Dad, I want to introduce you to some people.”  They came forward hands held out.

“Hello, I am Mary and this is Hector, my husband.  You have met our son Sean.  I bet he was out here grabbing a smoke.  Nasty habit that.”

How gracious and how adroitly she had put us at ease.  Yet, we could not help it; we gaped even as we smiled.  I looked up at Sean and looked down at his parents in wonder.  I knelt, opened my arms and hugged them.  I was immediately embarrassed.  I thought I had committed a faux pas that I should not have done that.  As usual my Bert came to my rescue as he said: ‘”Don’t mind her.  She is a hugger.”

 “That she is,” said Penny.

“So are we,” said Hector.  He and Mary were so gracious. They hugged back.

The moment passed. We moved to the Piano Bar.

The Meander:  I have often said that our travel experiences have been so varied that should I write them all out I would need to create a number of books.  One would be about the people we have met.  Sean was 6ft 4 inches tall.  His Mom was 3ft 8 inches and his dad 3ft 11 inches.   They taught us so much!

I will not forget the sight of Sean dancing with his Mum.

We were shipboard companions only and after that just ships that passed in the night.  It is often like that, but for a moment in time the stars aligned to hand us a remarkable travel story.

To Wander

When I think of wandering it is Wordsworth’s “I wandered lonely as a cloud…A host of golden daffodils”.

There is a happy aimlessness, a feeling of discovering something new, exciting and surprising.  I think pleasant thoughts when I think of wandering.   I think of freedom, to just be.

As a caregiver ‘to wander’ takes on a whole different meaning.   To the wanderer, your loved one with dementia it is a different kettle of fish.   To your care team wandering is a huge red flag that signals a myriad of issues.

All the nuances of the meaning were brought home to me recently.  I must confess that my definition did not undergo a sea change; rather it just expanded in meaning to incorporate the alternate reality in which I now live.

So what happened?

My Bert asked me to look at his belt.  He thought it was twisted.  It was not.   “Good,” he said then told me he would go and sit in his chair for a while.  That usually means he is going to take a nap.

I went to the computer, replied to three messages and began to read a news editorial.  I was perhaps one third of the way through when I heard a slight commotion at the front door and my Bert saying ‘”Thank you.”

Nothing to worry about I thought as I know my Bert loves to answer the door and my wonderful neighbours do come with offerings of goodies on a regular basis.  I got up in no particular hurry intending to see which one had brought an offering and to add my thanks.

Surprise!   It was a neighbour, but instead of cookies or muffins, she was bringing my Bert back from the end of the hallway while telling him: “See, you are home.  Here is Paula.”

My Bert was ecstatic.  He kept saying thanks and how it was a good thing she knew where he lived.  He hugged me, kissed me and blurted: “I was lost.  She brought me back.” Then he got teary eyed.

My brain went into overdrive.  Wandering has begun so I need to secure our home.  I need something on both front and balcony doors to deter or prevent easy exit.

The sucker punch of my Bert not recognizing me was nowhere to be seen or felt.  It was pure analytical thinking with a heavy dose of organizational skill that was foremost.   Problem solving mode kicked in.

Whenever there is major change or activity developing in your loved one you must report it to your professional team.  There are four people to whom I report.  Each one expressed a deep concern at this new behaviour.  The seriousness of it was unmistakeable in voice, concern expressed, mannerisms and instructions meted out.  All remarked on how ‘dangerous’ this behaviour is.  I was a little amused.

Sure, wandering is very serious.  There are a number of pamphlets about it.  It is a major concern.  I know that, but coming after my Bert not recognizing me deflated its significance.  Also, I could do something concrete about this.  I had some control and a plan going forward.  This was relatively speaking a piece of cake.  

My perspective and that of the professionals were quite different even though we all started from the same place:  When a person with dementia begins to wander it is perhaps the most sombre indication of major decline in our loved one.

What is the difference?   My professional care team is wonderful, caring, and observant and works with me to give my Bert the best quality of life possible.   I am grateful for their help, advice and guidance.  I know I can depend on them.  However, they are not deeply, emotionally, intrinsically involved with my Bert.   They do not share hearts with my Bert.  They deserve high praise for the great job they do.  I know they are in our corner.   That is more than enough.

I have proof that emotional stress is far worse than physical stress.  I am physically bone weary, but I can hope for relief.  I have proof that the deeper the love, the deeper the hurt.  There is no relief for that. Love’s open door is not for escape but to draw in and enfold.   I do not need any lock or alarm on love’s door.  That remains always open and endures the kicks, the punches, the heartaches.  It is the physical door that needs to be secured.

The Meander:  Our home is now secure.   It is such a simple gadget a toddler can open it.   I am the one deficient in know-how.   The first time we are leaving I was about to swear in frustration (no!) when the door would not budge.   Then the penny dropped.  I had not slid the tiny lever on the gadget as I should have done.  No, really, believe me, a three year old would have no trouble!

Floundering

 “Good morning, love.”  I move around the bed to help my Bert out even though he can manage by himself.

“Who are you?”

“Same old me,” I say with a smile.

“Do I know you?” He is teasing me.  He is a master at that.  I laugh and look up.  He must want a hug.

My Bert looks back at me.  The vacancy in his eyes seems more evident today.  More apparent that he sees without seeing.  Perhaps the macular degeneration has progressed, I surmise.  I reject that thought.  His last check-up was better than the previous one. 

I hug him.  “OK now, chop chop, it is club day and Tee will soon be here to get you ready for the day.”

There is no response, no return hug, and no acknowledgement except for a querulous, questioning anxious look.  

Reality is a sucker punch.  I do not want to believe what is slowly dawning. 

My brain is lethargic, refusing to process.  No.  This cannot be.  It is too soon.  My Bert’s brain is being ravished by Alzheimer disease but he is still here.  He still makes me laugh.  He is steadfast, true and reminds me so often that he will love me forever.   Is there love without memory? Forever is not, cannot be today.  Please, not today.

I am a fish, a flounder, perhaps.  There is no graceful sinuous, gliding, smooth movement in my usual element.  There is no buoyancy, rather, I am beached.  Floundering.

I am an open wound.   I am hurting, mentally, physically, emotionally.

My learned mantra which up to now has helped me navigate the Sturm und Drang of caring for a loved one with dementia is a platitude.  That formerly helpful phrase: “It’s the disease; it’s not your loved one,” has become a cliché that has lost all its weight and substance to console.

This is my Bert.   How can my Bert not know me?   In rapid rewind motion I see our entire life together.  The highs and the lows, the ordinary and the extraordinary experiences of lives lived well.  So rich a life; such an interesting journey; I must hold on to that or lose my very self.

My brain tells me this is the natural progression of the disease.  My heart refuses to understand.  My hearts does not have room for this new phenomenon.  I am floundering.  A spectre hovers.  It walks with me and whispers: “Yes, this is your new reality.”  I am walking covered in a veil of sadness which seems firmly attached.   There is no escape.  I fear this will be my constant companion.  It is called grieving.

Another cloak has descended on my shoulders.  I must know me for my Bert to know me.  Even as I note the convolution I realize that as I have been living for two now I must also love for two and be a mirror of myself for my Bert.  It will be a show and tell of our love, our life, our togetherness.

My ship has listed, my world tilted.  The shadow grows.  The light is dimmed.

The Meander: Today my Bert is my Bert.  I am exactly who I am and should be.   All is well. Tomorrow?  Well ‘tomorrow is another day.’  I may be me or who knows?  I may be someone else or no one, whatever the disease chooses.   I know in my Bert’s heart I am forever his Paula. That certainty is my ballast.

Remember: “It’s the disease, not your loved one.”  “It’s the disease, not my Bert.”  Repeat.