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.

Chatterbox

I have been called many things over my lifetime but chatterbox is not one of them.  Yet lately that is what I call myself, to myself.  Why would I do that?

I am Canadian so I will blame the weather.  This has been a particularly harsh winter.   There has been much wailing and gnashing of teeth (mine) as my Bert, whose only contribution to our travel adventures was: “Where are we going next?”  uttered before we had unpacked the bags from our last trip, is no longer allowed to travel. I had no idea that I would miss our travels, our winters away in some warm place or on a ship so very much. So here we were stuck in winter in our wonderful but COLD country.

My Bert would often say that Canada is the best country in the world except for the weather. I agreed, but would temper my enthusiasm with the thought that if Canada had  perfect weather it would be perfect and there is no such thing.

Here is another observation that my Bert would voice often: “Paula is always telling me that I talk too much but she talks too.”  “Yes, I talk but not anywhere as much as you and in any case you are such a talker, someone has to be the listener” I would answer. Then with a laugh he would say: ‘That is why we have the best marriage. I talk and you listen.”  That was said with a tone to make it unbelievable.  Yet, all that was true.

My Bert is really an open book and loves to talk.   Many a time we have been to a restaurant and before dinner is completed the entire wait staff knew more than they should about us, from how we met right up to our present situation. I would be kicking him under the table to tell him to be quiet to no avail.  I would be ignored.  I would then have to become the interpreter, rephrasing or correcting or echoing my Bert’s pronouncements and also becoming a listener.

Oh, how we talked together.   My Bert had such stories to tell!  We are both curious about our world, our country, people, places and things.   My Bert devoured news and current affairs.  I read and we talked about everything.   Our conversations encompassed silly things, weighty things, family things and couple things.  We agreed, we disagreed and agreed to disagree and we laughed.

Oh, how I miss that talking together.  Now, trying to have a conversation is a Herculean task.  I give up any thought of having a sustained conversation.   In the absence of that verbal communion I have become the chatterbox.  The sentences are made up of the basic noun and verb.  Heck, it could be just one word.  I get back one word in return and sometimes the word returned is completely out of context.  When my Bert attempts to express a thought it ends abruptly halfway and I try to finish it.   Sometimes I succeed but that is becoming more difficult as time passes. It is difficult to enter Alzheimer world when a thought is unfinished.

The inanity is mind numbing.   When does speaking become just noise?  When does it lose its main function of communicating? It tests my patience and it saddens me to see him struggle to find the words.  I think he knows what he would like to say but it takes a valiant effort to get it out.  Sometimes he just gives up.  The frustration is apparent.   He begins to pick at his fingernails and mumbles.

How can I relieve the anxiety?  I say: “Don’t worry.  Tell me tomorrow.”   Then I will rub noses or give a hug.   These now are the best communication tools.  There is no need for words then.

The Meander:    Should anyone be looking for ‘tomorrow’, ‘soon’, ‘later’ please check with a caregiver for a loved one with dementia.  We have usurped them.  We are wearing them out completely.  “When do we go to Breda?”   That is Bert’s birth city in The Netherlands.  “Tomorrow.”    “When are the kids coming?”  They left maybe ten minutes prior.  “Soon.”  “Are we going to bed now?”  We have just finished lunch.  “Later.”   A loving touch, a smile, a hug and holding hands are enough to relieve his anxiety.   We still ‘talk’.

Shoehorns

My Bert puts on his shoes using a shoehorn.  It has always been thus. 

The only time a shoehorn gets near my feet is when I am being fitted by a sales assistant.   My thumbs work for me. Always have.

My Bert is so dependent on a shoehorn that if there is none around he will fashion one from a magazine, folded paper, the handle of a spoon, a credit card, or my thumbs.  He is inventive and adept whether sitting or standing.

Shoehorns now for me have become analogous with my Bert’s aging and Alzheimer disease.  When his knee became arthritic he had to abandon the short stubby shoehorn and get one longer.  After his knee replacement the shoehorn became even longer so he could put on his shoes from a standing position. 

Among the travel essentials was the shoehorn.  We have forgotten them in places like the River Jordan and the Dead Sea and other places where we had to take off our shoes on our sightseeing explorations.     I still remember scouring a market in The Gambia looking for a shoehorn!

I have helped my Bert with his shoes and in disgust have discarded the shoehorn and resorted to my thumbs.  They work.

We are in the shoe store.  I have three pairs for my Bert to fit.  Every shoehorn is long.  My Bert is sitting on a padded bench and trying to get a shoe on.  The shoehorn only gets in the way.  An assistant comes by and suggests he stands up to use it.  I become the supporting post.  This is not working.  The assistant tries to help.  Bert hangs on to me and he thinks we are dancing.  He has completely forgotten the reason for us being upright.  He giggles and tells me there is a woman fiddling with his foot.

The bad shoulder begins to hurt.   My Bert wants to dance.  The assistant is sweating and I am sure the mumble I hear is not fit to print.   It is a Herculean task but finally one foot is in.  It is declared to be ‘good’.   I choose the opposite foot from another box and with equal effort gets it on.  My Bert walks around a few times and declares that they both fit and are ‘good’.

I buy both pairs.  I am never doing this again.  It is hazardous to my health!

“Paula, do you have a short shoehorn?  This one is too long to use to help Bert with his shoes.”  The question comes from our wonderful helper who was on her knees, valiantly struggling to use the shoehorn.  The shaft came up to my Bert’s knee and she was working awkwardly with the curved portion at his heel.

Laughter burst out of me as I thought my Bert is like the shoehorns.   I decide I better give an explanation for the mirth before she decides to call in to her office to say she has two clients on her hands and to please send in the emergency squad.

“Your question has reminded me of that old phrase ‘Once a man, twice a child.’   I am thinking how Bert is living his second childhood in conjunction with his shoehorns.   First it was the tiny shoehorn which with age gradually grew longer and longer.   Alzheimer disease has set him back to the tiny shoehorn which he can no longer use by himself.”

The laugh was bittersweet. 

Helping my Bert with his shoes is agonizingly slow.   He has to be in a standing position. I direct him on each step of the process while he holds on to the wall.  Sure, I could still use my thumbs.  It is the getting down to the floor which has become the problem.   Actually, I could get down but how would I get back up?  Calling 9-1-1 is not an option.   I smile to myself again.   I am thinking about having a crane on call.  Nah!

I can’t help but wonder how we will cope when he can no longer stand by himself.

The Meander:  My Bert and a shoehorn.   It is not such an odd juxtaposition.    He has been known to put on his slippers with a shoehorn. Then again, I am the one who sees the sublime in the ridiculous.  Only problem is that in this case what is sublime?  What is ridiculous?  I can only laugh.  Laugh with me so I do not cry.

Birthday Appraisal

I have just celebrated a birthday.    On the morning itself I turned to my Bert and said:”You can wish me Happy Birthday”.  “Oh, is it your birthday? “Yes”.  “Happy Birthday, Sweet Pea.”

The telephone rings and it is the first greeting of the day. “Who was that?”   “That was our son and daughter-in-law.  They were singing the birthday song to me.”   I begin to sing and he joins in.  “ Are they coming today?”  “No.  The family celebration was on Monday.  We had a lovely meal and you really enjoyed your shoe-string French fries.”  “Oh”.

My birthday was wonderful and different. It began with a Caregiver Wellness programme which included Dancercise, Music Therapy and Meditation. There was a fabulous lunch, then dinner with friends at a Japanese restaurant.  We sat at the Teppanyaki Bar.  My Bert exclaimed as the flames shot up towards the ceiling: “Gosh, I am HOT!”  Naturally everyone seated at our station laughed.  The evening was filled with laughter.

My birthday is a time of introspection; of reviewing the past year and looking with hope towards a brighter year.  That has not changed.

However, this year my astrologist friend told me that this was a special year for all who are born on March 21st.  She referred me to an entry in Google quoted here:

Your horoscope for March 21 to 27, 2019. This is no ordinary change of season. Spring has sprung on a super full moon in Libra and with the sun in Aries supplying added life force to Chiron in Aries, a transit that happens once every 50 years. … Aries is the sign of new beginnings, fresh starts, and action.”

I kept on reading the lengthy article as I was curious.  It proved interesting until I got to such deep astrological pontification on ‘Solar Return’, ‘square aspect’ and ‘Mars-North Node aspect’ the latter supposedly having great impact on my relationships and love life.  I am a caregiver for my Bert.   I can teach all aspects, astrological or not about love.  I gave up on the long form and with tongue firmly in cheek parsed the above short version specifically for ME, the birthday girl.  Here goes:

“This is no ordinary change of season” – It never is in Canada.  Snow in May and golfers teeing up in December are par for the course. Groan.  For me the seasons change on a daily basis and they are: a good day, a bad day, a day when brain cells die, a miracle day of almost normal.

“Spring has sprung” – Hey, hold your horses.  It is still only March!   Meteorologists will tell you that spring arrives on March 1st.. Huh?  Yet March does bring hope for warmer days.  I can feel that spring is in the air and I celebrate the fact of life, new life, my life, my day.

“A super full moon in Libra”- I did see the super full moon.  It was heavenly! (Geez!).  I did not care that it was in Libra or Libya or wherever.  It was full.  It was bright.   I was happy to see it.

“The sun in Aries”- If I had the power the sun would always be in Aries and every other Zodiac sign.  I am a child of Light.

“… supplying added life force to Chiron in Aries…every 50 years”:  Yes, the sun is a life force.  The rest being Greek to me I went to Google.    I found this among other soon to be forgotten tidbits:

In astrology, Chiron is referred to as the “wounded healer,” and on Feb. 18, this strange, and oh-so-unique, comet will conclude an eight-year-long transit through the dreamy sign of Pisces, and slide into fiery Aries until the year 2027. Naturally, this asteroid’s energetic influence will play a role in both our lives, and in the collective overall. So, yeah, this is definitely a big deal.”

No big deal to me as I will be long dead before this fascinating phenomenon comes around in 50 years.  Neither does being on fire for the next eight years inspire jubilation.  Also, since being sidetracked is an ever present danger when on the internet I also found out that Chiron is a comet, a key, the biggest superpower we have which helps us unlock our greatest gift from the heavens.    Somewhat oxymoronic for a “wounded healer” I thought.

The best was last.

“Aries is the sign of new beginnings, fresh starts and action.”  Every day is a new beginning.  For my Bert I could say every minute is a fresh start.  As a caregiver I am always doing.   I saw this as being given permission to be positive, to never give up.

The Meander:   Astrological prognostication or not, life is not dictated by our stars but by ourselves.   We can choose how we will overcome the vicissitudes thrown in our path.  I choose that no matter how dark the day I will try to face the challenges with a positive attitude for the rest of the journey.  We will make it with a little help from our friends… and astrology.

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. 

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.

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.