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.

Now we are nine

It is a universal truth that we will die, but as a caregiver that reality takes on an immediacy that is incomprehensible to those who do not travel this journey.  Yet it is still shrouded in mystery.   It is a wallpaper always in the background of every new observance of slow deterioration. Yes, we will die and yes, we are caring for someone who is slowly dying.  There is a reason that Alzheimer’s disease is referred to as a ‘Slow death’.  Yet, like all of us we do not know when or how or even where.

Current statistics state that 80 percent of caregiver’s will suffer from depression. Not documented is the percentage of caregivers who die before the one with dementia.  That happens and I would hazard a guess it occurs more frequently than reported.  My Lifeline Group often voice the sentiment that they do not want to die before their spouses.  We all want to care for our loved ones until the end.  Yet we know we have no control over that.  This fear is just one of the rungs on the ladder of depression.

The fact is that Alzheimer’s disease leads to death.  We acknowledge that but when it happens it is no less traumatic than any other passing of a loved one. So we experienced a deep sadness when our Lifeline Group of five couples was reduced to nine. One in the family had died.  We mourned together.  We could not help but wonder who would be next.

When I got the news a year ago today, it hurt.  I had to mark the moment somehow so I sat and wrote:

Now we are 9                                                                                

We met by chance but perhaps not

We ten self-selected from a disparate group

United by the ever mutating forgetfulness

Of partners here but not here; changed yet unchanging

Living in two worlds; alternate realities.

We ten bonded deciding to share, to care, to laugh, to love, to live.

There is just one escape, we know it

It is the same for all – the ultimate equalizer.

We refused to speculate or predict

How could we?

Each day, learning, all effort focussed on doing, doing, doing.

Each day new, unexpected, mysterious, unknown, surprising,

Each day its own journey within the journey

Now the news – one is gone.

We contemplate the expected unexpected and wonder

We are sad for the death and sadder for the living.

We mourn the loss

We – the Ten that are now

The 9.

The Meander: It is good we do not know the future and it does no good to speculate.  One day at a time is the way we must live as each one is new, different and unique to each of us.  We carry on, we share and we continue to care for each other.  Today my heart sighs for the two who is now the one.

Alzheimer’s University

 

Alzheimer’s University

My Lifeline Group is very well educated.  We are all geniuses.  It is a requirement if we are to be successful at Alzheimer’s University. The tagline for my blog is Standing Still is not an Option.  At Alzheimer’s University failure is not an option.

Truth be told I think we are still at the first year level, so arduous and complex is this University.  At this university first year may span one year or four years or more.  An Alzheimer’s degree is a multi-disciplinary degree with many courses.  No specialization offered as we have to do every course no matter how arcane it seems or whether we have an interest in the subject or not.  We must slog through the many topics. So with tongue firmly in cheek, here are a few of the courses:

Mastering questions – the same ones at least five times in thirty minutes in year one.  By year three it may be ten in ten minutes.

Seeking Logic in the illogical -Advanced Seminar that may have you being five persons, literally.

Confronting stigma – this is a much needed course to face the world and explain: “It’s a disease”.

Comedy unCentral – seeing the ridiculous in clearly highly emotional and terrifying moments.

Continuous patience module – you are required to show more and more patience in increasingly  stultifying and incrementally frustrating moments and which will include seeking divine intervention!

Living in two worlds – a core subject in which you learn to identify the real and Alzheimer’s world and find the ability to move between the two seamlessly.

Therapeutic lying, master’s level– a practicum

Creative thinking and solutions to banal issues like hiding the tooth cup or spraying the alligator away.

Accepting the abnormal as normal as in looking for the bread basket in the laundry room, in the washer.

Putting yourself first – a required course for caregivers. Success in this gives you a Ph.D degree.  This one is taught every semester for as long as the journey lasts and is almost unattainable. As I write this I can imagine fellow caregivers proclaiming sarcastically: “As if’!

Eliminating Tiredness – a professor is still being sought to teach this course. Qualified applicants may apply here!

The Meander: As the journey unfolds each of these ‘subjects’ will have a post or two.  Each day brings new insights.  I will share them willingly in the hope it brings a smile or some new understanding of this special path we caregivers travel together. (Illustration courtesy of Pixaby)

 

Gratitude art

Gratitude Art.

I cannot draw to save my life.  Even my stick figures look rather strange.   It is so bad that in high school when it was discovered that Latin was a particular challenge I was encouraged to take art as an alternative.  I was happy.  How difficult could that be? Also I liked art from a spectator’s point of view.  Three weeks into the artistic experiment I was back to Latin with a note which indicated that I cannot be as bad at Latin as I am at art.

I am glad I conquered Latin.  However, I still loved art enough to do some art appreciation courses later on.  Also, I know without a doubt that I am vital to art and artists.  My reasoning is as follows:  If everyone was an artist who would appreciate the art?  I am definitely in the art appreciation camp. I revere those who can and am first in line to show appreciation.

Fast forward many years and as a result of Alzheimer’s my art has been hung in an art gallery. I can claim to be a curated and hung artist. Will wonders never cease?

I do know my limitations but when it comes to my Bert there are no limits so off I went gallantly with him to art therapy.  It was interesting to attend as it was held in a historical home and museum.  After the usual tour and tea the project was to create a work that illustrated gratitude, or something for which we were  grateful. I decided I would help Bert with his idea and interpretation rather than show my ineptitude.  That was not to be.  I was told everyone had to produce something.

Bert did not need my help.  In no time he had drawn something that looked like a house with a figure in it.  He told our wonderful art therapist that it was me at home. He told her that meeting me was the best thing that ever happened to him.  Awhh.  That’s my Bert.

However, remember I cannot draw period, so I could not return the compliment. I went the modernist route to create a ‘thought’.  Yes!

We had paints, canvas, dowels, string, shiny buttons, sequins.  My creation was a wall hanging using mixed media.  I used a pretty crystal studded button and if you look carefully the squiggly thingie in the middle is embellished with sequins.  Yes, even I have trouble with an adequate description of this masterpiece.

So here it is followed by the ‘artist’s note’.

My Gratitude Hanger.

This represents a positive attitude and sunny disposition.  The colours are bright, happy, and sunny with sparkly embellishments to represent certain intense moments of happiness.

Friends and family have spoken of my happy outlook.  Many have told me that when they are feeling down they call me and know that they will have a brighter outlook afterwards.

Look and you will and see the tears, but they are dominated even overwhelmed by HAPPY and reach upwards to become the streamer of a kite? A bird? Wings?

It was in middle age that I finally realized that this quality so obvious to the people I meet was a wonderful gift.  Now I recognize that as a fact and I am immensely GRATEFUL!

Come on stop laughing!  It’s not that awful.  Maybe it is. When I proudly presented it together with the catalogue, which also featured my work and photographs of the exhibit to our son, he looked at it made a noise that sounded like “Huh!” and said: “Mom, you are a better writer than artist”.

OK, I’ll take that! “Huh!” Everybody is a critic. “Huh!”

The Meander: Look at my big grin and the proud stance of my Bert. Priceless!