Laughing with Love

A Dutch music video is playing and Bert is watching and singing along. It is set in a typical Dutch cafe and the music is upbeat and joyful.  He tells me that all the people are Dutch from Brabant.  He says people from Brabant are happy and full of fun.  Maybe that is true.  He is from Brabant. He is full of fun.  He is happy.

The phone rings. I recognize the number.  It is Jim. I am immediately apprehensive as Carol, his wife, has not been doing well lately.

“Hello”.

“Hi Paula, it’s Jim. I have something for your blog.”   No, I do not need to be worried as I can hear a smile in his voice.

“Oh, what have you got?”

He begins to laugh as he explains; “Well, it is about Carol’s mechanical cat.”

I start to smile as our group has been having some laughs about this cat since Carol got it.  I should explain that this is a ‘comfort pet’.  Comfort Pets are specifically manufactured to help people with various ailments deal with their illnesses.  They have been a staple at children’s hospitals, cancer facilities, hospices for years but now they are also being made and used for helping persons with dementia. There is the talking parrot, the dog and the cat.  They are both substitute companions and respite for caregivers.  Being electronic they interact in a number of ways and exhibit behaviours congruent to their species.  The parrot talks, the dog barks, the cat meows, purrs, cuddles and so on.  They are huggable, amazingly lifelike and easy care as there is no litter, walking, feeding or any of the care and demands required by a real pet.

“Carol goes to bed early, and the cat goes to bed with her” Jim continues.   “When I turn in later, I first take the cat away, turn it off and put it away for the night. If I do not turn it off it will meow at intervals and disturb our sleep. I was fast asleep when I felt a scratching, a kind of stroking and tickling at my neck.  Groggily, I tried to brush it away. The scratching came back and I felt Carol’s hand at my neck. She was doing the scratching, and she seemed to be getting frustrated and digging harder into my neck.  Then the penny dropped.  Carol was stroking the cat and was puzzled that the cat was not responding.  Now I had to think quickly: ‘Do I purr, meow, stretch out lazily or what?’  I could not remember what the cat did when that particular sensor was stroked.  I purred!”

Of course, by now we are both laughing so hard.

“Oh, well, at least you are a well loved comfort toy.”

“Yes.  That I am.”

“Thanks, Jim. I am sure I will have a post from this.”

Laughter helps.  On a not so good day a laugh will make it a little better.  Just a few days earlier, Jackie was having a bad day.  Jim called to tell her about returning home and noticing a large wet spot on the bed.  On investigation, Carol admitted to ‘giving the cat a bath’.  That made Jackie’s day.  It did not solve her particular problem but it made it look less hopeless as she laughed.  Jim thinks Carol has finally got it that the cat’s food is a battery. She had wanted to feed it. Next lesson is one or maybe twenty on you do not bathe a cat.

When the time comes I think I will get Bert a dog.  I will have to weigh the pros and cons carefully. After all you do bathe dogs but as for food, thanks to Jim, I will start the training early about the battery as the only food required.

The Meander:  My Lifeline group – Lifers- share our stories, our risible moments willingly.  We are incredible support for each other and even more important, we are friends.  We laugh a lot but never, ever at our loved ones.  When we laugh we thumb our noses at this terrible and terrifying disease.  It is our defiance and defense.  Otherwise, we would cry.

 

 

Something Worse 05/22/2017

The T.V. is on

An intrusive susurration

Barely audible

I hear, I do not listen

My thoughts are inward, personal,

Dark

Created from fear

Not knowing what lies ahead

Afraid to speculate

So tired, breathing is onerous

Brain at rest is wishful thinking

Sleep deprived too often a descriptive companion

Sleep is a roiling, swirling maelstrom,

Too vigilant to be peaceful

Thinking, doing, planning remembering for two

Forgetting self

Learning new unwanted skills

A logistical nightmare

Endless.

Tears make tracks down my face.

This disease that robs our humanity, our dignity is the worst.

“…Breaking news…22 persons, including children were killed by a suicide bomber at Arianna Grande concert in Manchester City, England… Hundreds are injured…”

Breath caught…Breathe, just breathe.

No, dementia is not the worst.

This is.

 

The Meander: May 22, 2017 was one day that the burden of being a caregiver was heavy.  The senseless bombing and loss of innocent lives at what should have been a happy occasion gave me a new, if somber, perspective.  I had to record it somehow.

 

 

Therapeutic Lying

I Lie!

“Gerard is coming tomorrow and we are going fishing. You have to come with us.”

“Oh.  When did he arrange that?” I ask.   My Bert hesitates and then: “Yesterday.”

Gerard, Bert’s brother, died last December.  But I say: “OK.  I will go with you but I am going to take a book.”  My Bert laughs.  “You can’t fish with a book.  I will get worms.”  Ah! Here is a nugget of reality for me to hold onto. He knows you do not fish with a book but need worms.

It is evening and Bert is looking sad.  Something is bothering him.  I can tell.  He is picking at his fingernails.  He does that when he is worried, anxious, confused.  I ask him what the matter is.  I hold his hands; put my forehead on his, which calms him; he looks up at me and I see fear and puzzlement in his eyes.

“Moeder has not come to see me for a long time.  She does not call me.  It is more than a month that I have not heard from her.” Bert’s mother died, if I remember correctly, in 1982.

“Oh, you do not have to worry.  She is so very busy. You know Moeder is always busy.  She will call you soon.  Do you want a cup of tea?” “Yes, and a cookie too?” he says with a smile.  His hands are still. I answer:  “You and your sweet tooth!  One cup of tea and maybe two cookies coming up.” The sadness is gone, the moment has passed.

That is therapeutic lying.

The first time I heard the phrase my immediate thought was: “Now that is one heck of an oxymoron if ever there was one.”  Little did I know this act would become a staple in my collection of strategies to deal with my Bert and Alzheimer’s disease.

We are taught not to tell lies.  However, we do know about those little white lies, the big whoppers and in Jamaica there is one called a ‘bare faced lie’ which is a lie told to you by someone who looks you in the eye and utters the most egregious lie without the slightest qualm. None of these are therapeutic lying.

Therapeutic lying is a very effective tool every caregiver learns to use.  Like most learned behaviours  you get better at it as time goes by. The more you do it, the better you are at it.  You do it not just for your loved one but also for yourself.  Of course we are going on a fishing trip; Bert’s mother will get in touch ‘soon’. Bert is reassured; I do not have to begin a long explanation of their deaths. No when, where, how nor why he did not know about them.  I do not have to say why we will not be going on a fishing trip with Gerard. I deflect with the offer of tea which my Bert could drink all day, and yes, he does like his cookies and cakes and ice cream or anything sweet.

My Bert attends an Adult Day Programme two days a week.  I would not tell him he is in adult day care which in essence that’s what it is.  No.  He goes to his club. A little therapeutic lying maintains his dignity.

So now I lie. I lie more than I would like but without any regret.  When I lie therapeutically I am showing my love for my Bert. This kind of lying maintains dignity, relieves stress, calms anxiety, provides solace, is a mood enhancer, a bonding technique and saves time which is precious to every caregiver.

Therapeutic lying is good for communication too. It can be the trigger to finding topics of conversation appropriate to my Bert’s interests.  I do fish with a book.  The baited line in one hand and the book in the other, so the next day or two weeks later I talk with my Bert about fishing and how I caught fish while reading a book.  We laugh. Photographs of his mother can bring a multitude of stories.  My Lifers have heard some of them.

The Meander:   Within the maelstrom that is Bert’s brain, time, people, places and events are all muddled. ‘Soon’, ‘yesterday’, ‘tomorrow’ are meaningless.  Yet at times those single words are the sum total of a therapeutic lie.  They are simple and yet so effective.  Some thoughts though lie too deep for tears or lies, any lies.

 

 

 

Mutiny on the Bounty Lives on in Pitcairn Island

As the longboats slowly pulled away from our ship, the islanders were singing a hymn.  Those not pulling on oars were waving to the cruise passengers lined up along the open deck. It appeared that every passenger and crew were waving back.  I turned to savour the moment with Bert and saw there were tears in his eyes.

“Why are you sad?” I asked.

“What are they going back to?  Nothing.” he said. I wondered at that observation but kept quiet.

Pitcairn lived up to its billing. You are in the middle of the South Pacific Ocean midway between Chile and New Zealand.  You finally realize how the mutineers could ‘disappear’ as we are in fact in the middle of nowhere. It is also the place that proved beyond a doubt that “you can find a Jamaican in every corner of the world”. Yes, the social worker on Pitcairn was English of Jamaican descent.

There were 49 permanent residents plus an administrator, his wife and two children, a nurse and the social worker who are contracted workers.  That was the total population.  Pitcairn is a British Overseas Territory  administered from New Zealand.

By name and nature they are Christian as almost half the population, Caucasian or Polynesian in appearance carries that surname and when the expedition left England to search for the island there was a Seventh Day Adventist Missionary on board who baptized them all.  Pitcairn Islanders are all Seventh Day Adventists.

We learnt  this and more from a Christian, the great-great and more greats grandson of Fletcher Christian, he of the famous Mutiny on the Bounty.  It was a most informative talk. We learnt that they were not totally isolated as they could and did have the means to connect to the internet for two hours most days.  The 45 minute talk became a more than two hour session as the questions flew.

Questions: “What do you eat? Where do you get your food? Do you make anything on the island? Where do you get any money? Who looks after legal matters?”

Answers: “A supply ship comes from New Zealand.  It also brings mail and whatever we have ordered.  Cruise ships like yours stop and bring us things like toilet paper, potatoes flour, soap. We are grateful for all that. We fish, have a few goats, pigs and chickens.  On the island we have a barter system, trading everything and sharing everything. Our administrator looks after the official duties.”

“Our biggest export for money is our stamps. We have brought our post office on board so you can be proud owners of a Pitcairn Island stamp.  Better yet, write a card to yourself and we will frank it and mail it to you.  They are being traded on E-Bay! We also make crafts that are for sale in the market set up in the lounge.”

If the Administrator was the Governor then Steve (or was it Tom?), Christian was the Mayor. There was no question he could not answer and  is often invited to speak about life on Pitcairn internationally.  He shares his fees and gratuities with the islanders. I would guess he has to pay for excess baggage after each engagement.

The current major topic of conversation concerned the recent judgment passed down from the highest court in England. The islanders were accused of incest.  The islanders lost.  They were to be jailed.  A six-cell jail was built, duly inspected and opened ready for the incarceration of the convicted incest offenders.  The jail, perhaps the best built structure on the island was being put to good if unintended use as follows:

One cell was the general activity and exercise room

One room was used by the social worker for one on one consultation

One was a sewing and craft room

One for a meeting place

One was the medical facility

One was used for its intended purpose, though it was rarely occupied.

An excellent use of resources I thought.

As the longboats rowed to the small island and Bert wiped away a tear an announcement was made that Captain Erik had given the order for some earth and sand from the island be brought from Pitcairn and placed on the aft deck.  Passengers were invited to walk on Pitcairn soil. Since we were unable to walk on Pitcairn, Captain Erik did the next best for his passengers.  He brought a little sample of Pitcairn to us. We did walk on Pitcairn soil.  Thank you Captain Erik for an unforgettable experience.

The Meander: As I stepped in the soil, I looked out at the shrinking longboats riding the waves. The singing waned.  I think I understood Bert’s tears. Do these Islanders live a life of only minutiae?  What do they dream about, hope for?  What do they plan for?  Are there any big ideas or desires to be explored or is every day distilled into just the immediate, bare necessities for existence?  I want to think they are rowing home to more than nothing.  I still ponder that.

Oh yes, we did buy postcards and stamps, mailed a few to friends and to ourselves. Maybe if I can remember where they are I will sell them on E-Bay – Nah!