Angel Falls

Before bucket lists became the flavour of the month Bert and I visited Angel Falls, Venezuela, the highest waterfall in the world.  If one can back track on creating bucket lists then this is one adventure we would have included on our list.

Angel Falls is located in Canaima National Park which covers an area the size of Belgium. My book and brochures told of a place sacred to the indigenous Pemon Indians who had built camp accommodations for tourists who came from all parts of the world to see Angel Falls, though at the time of our visit you were not allowed to go to Angel Falls but could view them from boats, helicopters, light planes or take a six day guided hike to the base of the falls.

The trip from our hotel to the Simon Bolivar International airport would be about one and a half hours.  The tour included the flight from Caracas to the airstrip at Camp Canaima during which we would view the falls.  After refreshments at the camp we would take a two hour hike over a mountain, speak with a hermit, if we were lucky, gaze at spectacular vistas and get back to the camp for lunch.  We could swim, fish, have a siesta, watch some craft making, shop for souvenirs and generally relax until our plane came for the return trip.  We would again see the falls from a different perspective on the way back.

We spoke to a young Canadian couple, she from Goa he Canadian born.  All were excited to be going to see Angel Falls.

At the airport, our tour guide led us quickly to our waiting area which was quite a trek from the entrance.   As we walked to the waiting area Bert looked out the window and saw a small, somewhat decrepit airplane sitting on the tarmac.

“With our luck, I bet that will be our plane.” He said with amazing prescience.  We laughed and one German guest said: “That is a DC 3 which  is one of the safest and best  airplanes ever built and though old I would trust it more than some of the newer ones.  You can trust a DC 3 to get you where you are going.” Obviously an airplane buff he told us more than anyone wanted to know, but it was a paean to the craft so all positive.

That was our plane.  The stewardess placed an empty beer case on the ground.  That was our step up into the body of the plane.  She had an upturned orange crate for a seat placed between two straps for her security.  The plane took off with a loud back fire.  The pilots seemed to be sharing a joke. Oh, did I reveal that there was only an open curtain between the cockpit and the cabin?  The plane rose and settled with a sound that was reminiscent of a buzz saw.  I looked around.  The German seemed to be praying.  Our Canadian couple was a study in contrasts.  He was slightly green, echoing Bert’s new hue while his Goan wife was eagerly looking out the window, bursting with curiosity.   The tension was palpable.

We leveled off and immediately our intrepid stewardess came around with beer, juices and water, all part of the impeccable service.   She never ceased serving the entire two hours it took to get to our destination.  Throughout the flight the two pilots joked, listened to the radio and only interrupted the cabin chatter and prayers to announce that there was heavy fog and we would not be able to see Angel Falls on the way in but we would on the way back.  Speculation as to which was the better side to see the falls became the new topic of conversation.

It was a relief to land.  Comments varied.  The Pessimist:  “I just hope we can get back.  We are in deep jungle here.”  The optimist: “Well, if Mr. Angel and his WIFE (his emphasis) could make it down from the top of the falls then we can get out of here too.”  Me: “Yes, but it took them 12 days and by that time I would have missed my flight home.”

The scenery was breathtaking!  We were climbing up a ridge overlooking the lagoon.  We saw the hut, but no luck.  The hermit was not at home.  The local guide told us he was from the USA and that he could be around but not wanting to receive visitors today.

We rounded a bend and the guides brought out large strong plastic bags.

“Please put your bags, cameras, anything you do not want to get wet in these.  We will be walking under a waterfall.  Also we would like you to walk in single file and stay close to the mountain.”

Carrying the bags and armed with waterproof flashlights, we were led over large wet rocks and boulders,  on no defined path,  a watery screen on the left, wet craggy outcrops as hand holds on the right, and a sheer, extremely hazardous drop to the lagoon, if you make it.  The worst possible walk for anyone with acrophobia (read Bert!  We followed instructions closely except for our Goan pal who was scrambling all over the boulders, peering through the falling water, standing on the edge exclaiming about the views. Her husband meanwhile had joined the praying group.

“Were you not concerned when your wife leaned over the edge of the cliff?”  I asked.

“Oh, no.  She is a mountain goat.  She does this all the time.  She is really adventurous.”  He laughs. She laughs. I shudder.

The hike continued. Wonderful vistas all around,  but I was happy to see the Camp and lunch and the plane sitting comfortably on the tarmac.  Lunch was very good.

Our languorous, supine selves are rudely aroused by repeated back fires.  Smoke billowed from the undercarriage of our aircraft.  The stewardess beckoned.   No one rushed to board.

“Ladies and gentlemen, the weather is beautiful for our flight and views of Angel Falls.”

The views of Angel Falls are spectacular.  Unforgettable.   We were being flown though an opening between two hugs mountains.  We flew in one way, turned and flew the other way.  The pilots did some dips and turns and gave us  spectacular views from all sides.  At times you felt you could touch the sides of the two mountains on either side of the aircraft.  A green Bert soon exclaimed:

“That’s enough.  Let’s just get the hell out of here.”    Both cheers and groans are heard when the pilots announce the last sweep.

The stewardess continued her beer rounds.  We are invited to see the cockpit.   There are quite a few takers, including me.  The pilots are great.  I accept the invitation to ‘fly the plane’ while they announce: “We have a new pilot flying the plane”. Such fun.

“Did you really fly the plane?”  Bert asks.  All around answered: ”Yes.”  We laugh.  We are more relaxed.  The gambit worked.

We are back at Simon Bolivar International airport.   We find our waiting minibus.  On the way in it was quiet, on the way out we cannot stop talking about our wonderful adventure.

The Meander:  I would not want to go to Venezuela now.  I am grateful  we have been there, done that!

On our way home we changed aircraft at La Guardia.  We went from an airbus to a DC 3.  Updated, of course.  Serendipitous?

 

 

One has the disease, the other is sick

“One thing you must learn, and learn fast is that you have to look after yourself first.”  The counsellor held my hand and was looking in my eyes as she said this with deep sincerity.

Teary eyed I looked back.  “I know what you mean.  I know if I am not able to look after Bert….”  I did not want to finish.  In a moment of insight I said: “You know, with this disease, one has the disease but it is the other that gets sick.  The problem is that it is the carer who gets sick while the one with dementia becomes more dependent.  They suffer less than the caregiver.”

That is one of the anomalies of Alzheimer’s. These were early days and I wondered how it could be that someone who was slowly losing their faculties could suffer less than the one caring for them.   That cannot be.  It must be so terrible to be losing your memory, the thing that is so vital to our being.  The one thing that gives us continuity that links us to our past, our family, our friends, our community, shared experiences, our roots and is a crucial component in our evolution.  At that time I had not yet discovered Alzheimer’s world nor realized that I had to live in two worlds.  At that time I did not realize how much communication, everyday talk was important to my relationship with my Bert.  We had always been a very connected couple, or as my Bert often said: “Where you see me, you see Paula.”  At that time I did not know that I would ever feel claustrophobic, imprisoned and caged by my Bert’s love and the deep shadowing which is a hallmark of the disease.

Yes, he has the disease but I am the one that is sick.  I am sick of being responsible for everything.   I am sick of seeing my vibrant, voluble, caring Bert struggling for a word and sleeping too much.  I am sick of my social butterfly Bert sitting through dinner in a restaurant without saying a single word.  I am sick of caring for my Bert, my husband, as I would a child.

Caregiver care is not for the basics only; it is care with love, with respect; it is care that must preserve the dignity of our loved one.  It is knowledge based care of one human being that is also the one with whom you have shared a lifetime.

Caregiver care is living for two so dementia puts an extraordinary onus on us, turning our existence into a two for one special.  The conundrum is that it is special.  This awful disease elevates ‘sharing’ to a new level.  It forces you to share the physical, the mental, and the emotional in every possible way that can be imagined.  Still it is not a true sharing.  It is the caregiver who does the sharing for two and so falls prey to illness while caring for another who is slowly dying.  Depression, a compromised immune system, increased susceptibility to common ailments as colds, headaches, and my personal bête noir,  lack of sleep which has its own subset of ailments, are just a few caregiver ailments.

What can you do?  That is the million dollar question. Having a caring counsellor, seeking out  all areas of support, having a Lifeline group, a good diet, getting some exercise, Yoga, Tai Chi, scheduling an activity you love on a daily or weekly basis, Mindfulness and meditation are all good  IF YOU HAVE THE TIME!

The Meander:  I have taken my first prescribed sleeping pill.  I would rather not.  My Mah-jong time is sacrosanct,  I eat well but do not get enough exercise.  I do not know how I would survive without my Lifeliners.  Every now and then my counsellor’s words reverberate but the ‘first’ is bothersome.   My Bert is the priority.  If I am lucky, some days I actually come second.

 

Aphasia…or?

So lately my Bert has been coming up with the most interesting nomenclature for everyday items.  He looks at the shoe he is putting on and calls it cheese.  Trust a Dutchman to come up with that particular mental contradiction.  Then he looks at his cheese and calls it bacon.  At least they are both foods. He is muttering.  I lean in and hear: “St. Anna Boys” being repeated over and over.  There is a ogical link, sort of.  Bert was a hard playing member of SAB – St. Anna’s Boys Soccer club in his youth.  It is close to bedtime.  Will I be a soccer ball tonight?

He says something to me but I cannot understand.  Not only is it garbled but there is no connection, it seems, to the conversation we were having about needing batteries for his hearing aids.  “I didn’t hear what you said.”  That wonderful humour comes through. He laughs and says: “Want my hearing aid?” I laugh with him but I am wondering if he mumbled to tease or were his communication skills diminishing.

There are a few other signs that indicate, as I call it, a few more brains cells have died.  Bert is speaking less; he has difficulty finding words and so makes up new words that stretch my imagination to the limit to decipher.   He does not write anymore and reading is limited to spelling out words, saying them out loud, but I am not sure that he understands their meanings.   Are these the skills of a four year old, his assessed cognitive age?  I am living out my own Curious Case of Benjamin Button.  I was fascinated by that movie.  Never thought I would find any thing remotely relating to any experience I would encounter in my life.

After consulting my sources and resources both human and virtual I have come to the conclusion that my Bert may be exhibiting the early stages of aphasia, specifically Primary Progressive Aphasia.  Do I sound doubtful?  Of course.  Nothing is cut and dried when it comes to dealing with dementia.

The main causes of aphasia are a stroke, a brain injury or a brain tumour.  It is usually the result of an event that is sudden or an emergency.  If that was all then my Bert does not have aphasia.  Then I read that there are six or so types of aphasia and Primary Progressive Aphasia (PPA) is the rare form that is found in persons with dementia.  PPA is a disorder in which people lose their ability to read, write and understand language over time.  It is the only type that, as its name suggests, is progressive, takes time in its development and have nothing to do with a sudden trauma to the brain.  It is more prevalent in persons who have Alzheimer’s disease and Frontotemporal  dementia.

Here is a twist.  PPA may be rare in people who have it without having any form of dementia. However, if you have dementia is this not a natural deterioration to be expected along with all the rest as the brain breaks down over time?   Also, since Bert has age-related macular degeneration could his diminished abilities to read and write be a direct result of that ailment?   However, how would I account for the confusion and his new found ability to create new words, his search for words, his mumbling and the rest?

So here is a topic to be explored with the various experts we see.    I have no wish to fast forward my Bert’s illness but I do believe that forewarned is forearmed.  If I begin to wrap my head around this PPA thing, I can begin to search for ways to alleviate the problem since my Bert’s problem is also my problem.  I will be working on strategies to aid communication.  The Alzheimer’s Society has resources that I can begin to use right now. There are some excellent blogs, newsletters and articles that will help me find best practices.  Best of all the Lifeliners will put our collective heads together to explore possible solutions and find support.   We are a creative bunch.  I can see us using all kinds of homemade tools, flash cards, art, gestures, music and more to communicate with our loved ones.   We will share what works. That is what we do.  We share to show we care.

 

The Meander:  Unlike a stroke victim, when PPA becomes another bump in the road on the Alzheimer’s journey, there is no cure to anticipate.  A legion of therapists will not be able to reverse the affliction.  My Bert or anyone with Alzheimer’s aphasia will only get worse, not better.  Ay, there’s the rub!

 

Be the Calm in Your Storm

A caregiver must take on all the responsibilities both large and small of daily living.  All the shared tasks are now yours alone.   From financial matters to today’s dinner and everything in between all are now on your shoulders.   In addition there is the need to be always mindful of the special needs of your loved one.   Caring for your loved one is job one.  As example just last week my Bert put the kettle on for what would turn out to be the last time.

Both Bert and I are tea drinkers.  In our couple’s language when one asks:  “Would you like a cup of tea”, it actually means, “I would like a cup of tea.  Are you going to join me?”  The answer is invariably: “Yes.”  Putting the kettle on has been one of the little chores Bert loves to perform.  He feels he is ‘helping’ me. So last week the conversation began as per usual with Bert asking the question.

“Would you like a cup of tea?”

“Yes.”

“OK I will put on the water.”  Two minutes later:

“The water is in the kettle.  It is on the stove.  I do not know which dial to turn on.”

It takes an enormous effort to remain calm as I get up and go to the kitchen with my Bert, trying not to hurry or show my panic.  I look at the stove.  The kettle is sitting on a large unlit burner.  Thank goodness.

“Oh, love.  See.  The kettle goes on here.  It’s already plugged in.   Soon the water will boil.”

In my head the conversation goes like this: “Holy crap. If he had turned on the burner under the electric kettle it would melt it and if I was not here he could have burnt the whole place down.”  I am appalled.  I am shaking inside.  I really need that cup of tea now.

Bert: “Oh. I forgot. That is bad. I am a bad boy.”

I smile.   “Yes. You forgot.  That’s nothing to worry about.  You are not a bad boy. You are my honey, and we are going to have tea.”

“You have to make the tea.”

“Sure, I’ll make the tea.”

Internally I am thinking: “You better believe it.  No more tea making duties for you, my love.”  I sigh.

I reach for the cookie tin, put it on the table and say:  “Here are your favourite cookies. Take out some to go with the tea.”   Ah, I think, he can still ‘help’ me as going forward my Bert can get the cookies while I make the tea.

“OK” he says as he puts cookies on a plate

My heart rate is slowly coming down.  Things are back on track.  My Bert will have his tea and cookies and has already forgotten that he wanted to put the electric kettle on the stove to heat the water. I am already formulating my answer for the next time he asks: “Do you want some tea?”   I will answer yes, as usual but will add:  “I will make it for both of us and you can get the cookies.”

I am happy I remained calm.  I was reassuring not censorious.  It could have been so demeaning, chaotic and upsetting to both of us if I had shouted out something like: “Are you crazy?  That is an electric kettle.  You could’ve burnt down the place….”  I would have had a spouse with dementia having an anxiety attack or worse, and for the rest of the day and maybe longer I would have been berating myself for ‘losing it.’

The Meander:  Being careful to reassure, to be calm, to reduce anxiety over any situation great or small is another talent caregivers learn and develop over time.  It is not easy but by acquiring that skill we help not only our loved ones but ourselves as well.   Sure, the situation could have ended very badly, but it didn’t.  We carers learn to look at the bright side…and there is always a bright side.