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?”

Short Shorts

My Bert calls me Mama.

“I am not your mother. I am your wife”

“I know.” he says.

“So, why do you call me Mama?”

“You are my Mama because you take care of me.”   This is no longer a momentary lapse; it is a delusion.   My name alternates between ‘my Paula, my wife and Mama.’   I presume that since I go from Alzheimer’s world to the real world perhaps my Bert goes from reality to delusion and back again in much the same way.  I do not know.  I doubt the transition from Mama to wife means anything to my Bert.  I do know that to him I am Mama in that juncture of time.  When he calls me my wife or my Paula it is the truth, the reality of that moment.

The only significance in those moments is that whatever he calls me he knows who I am.  He has not forgotten me and in fact has more cognition, where our relationship is concerned, in his world in that I am not one or the other but a composite of the roles I fulfill.  He does recognize that I am wife and mother and also just Paula.   What do I do?    Nothing.

***

We are on our way home.   My Bert has spent the day at his ‘club’.  He was happy, telling me that ‘They all like me and they tease me’.  Teasing will always get a positive response from Bert as he has a PhD in teasing.   A soft white splatter, then some more hit the windshield.  Omigosh.  I am not ready for winter.

“Look, it is snowing.  It is too early for snow.”  I sigh.

My Bert leans forward and says: “Don’t worry, it’s only hard water.”   His perspicacity generates a chuckle.   I wonder if I should pass on this definition to a meteorological agency as another descriptive word for snow.   It does sound logical doesn’t it?   Think of ice.  That is definitely hard water.

* * *

My Bert lost his hearing aids.  If I have told him once I have told him a hundred times to leave his hearing aids in until I remove them.  Well, that goes in one ear and out the other, hearing aids in place or not.  I look in all the locations that would seem logical for him to put them.  Then I look in some unusual places.  I enter Alzheimer’s World and begin to look in the most implausible places imaginable.  No hearing aid.  I remember the bread knife in the washing machine and begin the search again.

Although I know the hearing aids had to be somewhere in the home I cannot find them.  I give up, realizing Alzheimer’s world has defeated me.  I call, order a new set and make the appointment to have them fitted in three weeks.

The loss of the hearing aids becomes a subject of conversation.  This happens more frequently than you may think.  I heard of them being in shoes, in a flower pot and other such interesting but bizarre places.   It makes for a good laugh but I am thinking of the replacement cost and wondering how to ensure I do not have to do a repeat.  Three days before the appointment I open the freezer, root around to find what I need and right in the corner there is a pair of twisted together, flesh-coloured objects  winking at me.  You guessed it.  The hearing aids.   Of course they are no good anymore.  My Bert has frozen his ears off…well the hearing aids.

* * *

A new Personal Support Worker (PSW) is coming to get my Bert ready for the day.  It is not the usual male aide but a woman.  I am unsure how my Bert will respond to this.  She arrives.  We all go to the bathroom.  I will hang around just in case.  I call out cheerfully:

“OK, Love, time for your bath.”  My Bert looks at me balefully and I am mentally preparing what to say if he balks.  He harrumphs as only he can, begins to undress and says: ” Why do I need two people to give me a bath?”  The PSW is marvellous she laughs and says:

“You are so lucky; you have two beautiful women to help you.”   Without batting an eye and with a devilish grin my Bert turns around and says: “Want to change places?”

We all burst into laughter.  I leave them to it.

The Meander:  As long as I can laugh with my Bert at the vagaries of this dreadful disease, we remain its masters.  I had no idea that Alzheimer disease could provide so many instances of comic relief.   I hope we have many more moments of merriment at its expense.