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Small gift, Big Lesson (PNG)

“Lady, lady, for you.”

I looked down to see the little boy tugging at my pants and holding a small, colourful, Bird of Paradise woven basket.   It was the same little boy I had just met at his mother’s stall.  He had such beautiful eyes.  I taught him ‘Inky Dinky Spider’.    We bonded.

We were in Papua New Guinea at the port of Lae.   The cultural tour was over and my head was a maelstrom of weird and wonderful bits of information.

  • Mourning rituals: When a husband dies the wife is locked away for a minimum of six months.  She lives in a semi-starvation state and is looked after by other women in the tribe;
  • Some women make beads for each day of mourning.  Count the beads and you will know how long she mourned.  250 beads means she mourned for 250 days.
  • The MUD people are one of over 700 tribes and language groups in Papua New Guinea. Pidgin English is the only shared language.  When a mud person die they must be buried near their home.  If one should die far away a collection is taken to bring the body home.
  • Mud people have various death rituals all of which end in the body being mummified in mud in some way except for the method where the body is left out to be picked clean by vultures and insects. The bones are then put in caves or kept near the home.  The head is revered and is kept inside the home. “Would you like to meet my father?” is not such a simple question as if you answer “yes” it may result in your actually meeting his skull.  We were told that one man kept the skull of his first wife in a zippered  carry-on bag, introduced her to all and sundry and spoke to her frequently.  Needless to say such luggage now holds a somewhat macabre fascination and I often wonder what marvellous mementos are ensconced therein.

Then there are the Bird people.  Birds with plumage that defies description, flaunting colours that cannot be duplicated abound, and are indigenous to Papua New Guinea  There is an almost supernatural connection between the people and the birds.  They infiltrate all areas of life – the religious, social, political and the magical.  Ceremonies always include people dressing up with feathers, aping the stance, movement and nature of the birds they try to replicate and emulate.  Then there are the Mesmerizers, but that is another story.

Now here we were in the market, much bigger than usual as a cruise ship was in port and this little man, maybe five years old is giving me a gift.  I laughed as he tugged and held the miniature basket/purse aloft smiling shyly.  “Thank you.  Thank you.”   I handed it to Bert and got out US$5.00 from my own purse.  Before I could hand it to my little friend the mother appeared as if from nowhere and said: “No. No.  Basket gift.  No money”.  Her words did not match the look in her eyes which was one of reproach.  She said: “No pay.  Gift.”  I got the message.

Dropping to my haunches (I could do that then) I enveloped the boy, hugged him and said “Thank you” again.  He giggled.  His Mother smiled.  I looked over at the grandmother still at the stall and she gave a slight nod and a gapped- toothed smile.   I felt a shiver of shame.   If I was at home and got a gift I would not go to my purse to offer money.   Here I was, someone who prided herself as a traveller not a tourist doing a gauche touristy thing.  Unintentional, well meaning but a blunder.

Our little friend said something to his mother, she nodded, and he held my hand and said: “Come.”  The six of us in our party all followed him as he led us to many stalls.  Everyone seemed to know him.  Del made a remark that he was a born leader; a Mesmerizer who would be able to get anyone to follow him.  When we got back to his mother’s stall Bert did the right thing.  He looked at all the offerings and bought a wooden ashtray, a woven tray with two place mats, a tiny bowl rimmed with shells.  He was able to do what I wanted to do.  He gave them much needed currency in the best way possible by purchasing the goods without barter.

Our little friend accompanied by his grandmother came to the shuttle bus to see us off and waved enthusiastically as we left.  “Bye,  lady.”   We waved back until they were out of sight.

The Meander:  All the things Bert bought went into the ship’s auction.   I kept my little basket/purse.  I will not use it but it reminds me of my little friend.  It reminds me that life lessons may be learned anywhere and when you least expect it.  I have not made such a mistake again.   Every gift needs only a simple “Thank you.”

If I can Help…

“Hi.  Love reading your blog.  Thank you for all the great tips. You are sharing your experiences as a caregiver and in doing so you are helping us too.  So much of what you write is just what I am going through.   I learn a lot from you and it makes me realize I am not alone at this very difficult time.”

“Thank you.   Yes, the road is long and difficult.  It can be hard to find anything that brings joy especially on those trying days when nothing seems to go as you would wish.”

A group of caregivers were sharing experiences and tips about what worked for them in a variety of situations as they cared for a loved one.   I was eager to hear of the solutions which were very creative.  Topics ranged from encouraging your loved one to bathe with everyone wondering why most dementia patients seemed to be afraid of water, to that often discussed ‘shadowing’.  We also discussed the missteps that tripped us up every now and then.

My story was in regard to my Bert talking to the photograph of his mother every night.  One night he came from the room and said: “I love you, Mama.”  I laughed and said: “I am not your Mama.  I am your wife.”  It took me an hour or more to calm him and to convince him that I was not rejecting him.  My Bert looked at me with tears and said: “I know you are my wife, but you are my Mama too.  You look after me.”

Apparently, that confusion in relationships was not specific to me.   There were fathers who were jealous of sons who hugged their mothers; A father who decided his daughter was his sister and/ or wife; A husband who thought his wife was his personal support helper and the helper his wife.  Come to think of it that is not too far off the mark.  They were both caring for him.

One spoke about the mistake she made when she decided to have her mother go to the Adult Day Programme for a second day in the week.   Oh, that got a very animated response.  We all had had experiences of introducing a programme to our loved one.  Nothing was wrong with the programme just that you are not there.  Her mistake was to prepare her mother for the new routine by telling her she would be going to her special club now for two days not one.  That she would have an extra day to be with friends, do some fun stuff and have a great time with the other club members.

Sounds good, except her mother only caught on to ‘extra day’.  Mother was livid.  Why was she being ‘sent away’ for an extra day?  Did her daughter not want her around?   Was she such a bother?  The group got a most graphic recounting of the battle which was made worse when on arriving at the programme, mother asked her if this was the ‘extra day’ and was told that it was.

I interrupted the narrative to ask: “Why did you tell her it was an extra day in the first place?”  She laughed and answered: “I had not yet read your ‘Therapeutic Lying’ post nor become adept at it.  It was early in the game for me.”

I understood, totally.   I too, knew nothing about Alzheimer’s disease but I learned with experience.   It took me a while but I found out that sometimes the best way to protect and care for my Bert was by the sin of omission.  When I added a second ‘club’ day, I said nothing about it.  We just went on our usual day and two days later we went to his ‘club’ again.   It helped that Bert was at the stage where days, dates, time were inconsequential.   I did need to reassure him that I would be there to pick him up and we would go home together.  After nearly two years in a Day Programme, I must promise him that I will come for him at 4 p.m. and then we seal that bargain with four little kisses.  When I pick him up his smile could light a small town.

If my experience can help any other caregiver in some small way, I will consider that a special reward.

The Meander:  Our loved ones trust us implicitly. We are their everything, literally.  We agonize and experience stress when we know our behaviour is not quite what it should be.  That is the real world.  The answer for the caregiver is to remember that we have to live for two, act for two, do what is best for two.  All our loved ones want is to feel safe, protected, and loved.

 

 

Day at Sea

I was going to write about a visit to Papua New Guinea but as I flipped the pages of my travel journal I came upon this ‘Day at Sea’ entry.  I read it and realized just why we enjoyed our cruise trips so very much.  At sea you can do as much or as little as you want and you never have to do the dishes.  This sea day is a good example.

‘Breakfast in the Lido was great as usual.  I do appreciate the service.  Bert and I just choose what we want and there is staff to take it all to our seats.   The ship was not rolling.  The sea was calm, glass smooth which made me wonder if we looked as if we needed the extra help.  No, it was a service.

Next came a trip to the library.  There is a new librarian on board.  The last one was Canadian, this one is British, a bit prissy until Bert told her I was a librarian and being Bert and my number one fan, she got a bit more information than expected.  She thawed, visibly.  Bert borrowed Hitler’s Willing Executioners by Daniel Goldhagen which I did not think was cruise reading but then WWII is of special interest to Bert.  I took out Alice Walker’s short fiction collection The Way Forward is with a Broken Heart.  I do like her work, this was somewhat autobiographical which drew me to it and I had not yet read it.

We went to lunch in the restaurant and met some people from the USA and a couple from Germany.  Good conversationalists all and found out that the German couple would be on board for the entire cruise too.  The ones from the USA would be leaving earlier.  I selected lunch from the ‘Spa Menu’ – light, calorie controlled, low salt and delicious.   It is so much better when someone else cooks it and all you have to do is eat it.

Bert read while I decided to go to the ‘Stretch and Relaxation’ class.  (Note:  You can tell it is early in the cruise if I am on ’spa menu’,  doing exercises and living a somewhat virtuous existence.)

We went for tea.  Really this is not needed as we are on early seating for dinner.  Where did the good intentions go?  To hell, I must presume.

Dinner companions will be with us for a short time as they are only on board another 15 days. There is Ruth, who had a birthday yesterday, Barbara and Eleanor, travel companions who live in Los Angeles and Willem, who is a dance host on board from The Netherlands.   Willem will be around for the entire cruise but not necessarily at our table.  The dance hosts are usually seated around the dining room at tables where there is a high proportion of single ladies. It did not take long for Bert and Willem to start the usual  joshing and teasing that occurs when Dutchmen meet.  That was fine by me as I found the women to be very interesting.

The evening’s entertainment was a lot of laughs.  There was comedian, Mel Mellers and a multi-instrumentalist Simeon or Simon Woods who kept us in stitches.

It is time to work off dinner so off we went to the Yacht Club and got lucky.  The OPUS Caribbean Band was playing and the party was in progress.  They are the house band and play a variety of dance music.  Just about everyone was having a great time.  At one time I was worried about Bert’s knee but he was in the swing of things and having a ball.  It does not matter if you were the world’s best or worst dancer at all.  The object was to have fun and it seemed the crowd was hell bent on doing just that.

We made plans to meet two other couples for breakfast and agreed to share transportation next day to go touring.   It should be a good day as we had all looked at the tour brochures and were interested in seeing the same sites and attractions.   We also promised others to be in the club to be back for more dancing.

We closed out the club that night.  I might have danced off dinner but certainly not the drinks.  Not to worry, we are on vacation.  Maybe just maybe I would walk it off tomorrow depending on how much walking there would be on our sightseeing tour.’

The Meander:  What a pleasant and relaxing day.  What a day of doing just what you want to do.  How wonderful it is to meet people, to find common ground, to laugh, make connections.  We have some dear friends whom we have met on our travels.   They are a very important part of our travel memories.  Travel unifies.

 

I Am Thankful

Gratitude n. being thankful, appreciation of and inclination to return kindness.

I believe that every day there is something for which we can all be grateful.  It can be small or large, internal or external.  It can encompass all nature, thought, the physical as well as the meditative.  No doubt you have heard the variation of the theme of being alive.  The simple, polite inquiry of: “How are you?” will bring an answer like: “Well, I’m still alive” or: “I woke up this morning so everything is good.” My favourite answer is: “Well, I am still on the right side of the grass.”  That always brings a smile to my face.  I am grateful for that smile.

However, these last few days I have been filled with a special kind of gratitude.  It is one that came after my unwanted but necessary visit to the ER.  I am feeling poorly, in pain and my number one priority is the care for my Bert.  How will I cope?  There are so many little chores to see to, too many to count.   I was worried but I should not have been.   We are blessed by having the sort of neighbours and friends that come to your aid swiftly, competently, caringly, without question.

I am grateful to the Lifeliner who was at the door to pick up the prescriptions and get them filled.  I am grateful for the neighbour who instantly took away the worry of getting my Bert to his Day Programme.  “Just tell me what time to pick him up and I will take him.”   How precious an offer that was.  Here is someone my Bert will find familiar enough to accompany without a fuss.  I can go back to sleep and with the Valium still coursing through my body, I have no choice, really.

Then there is the neighbour who brought dinner in a beautiful wicker basket which had everything including two lovely serviettes, such a cheerful and most welcomed gift.

I am grateful to the Lifeliners who could give practical, hands-on help and those who could not who sent words of cheer, good wishes and prayers.   I even got instructions to turn off the phone.

Once friends heard, the offers kept on coming with a couple wondering why I had not called immediately.  When I explained that I was calling the ambulance at 2 A.M. the reply was: “You can call me at anytime.  You know that.”  Yes, I do and I am grateful.

Our family of friends and neighbours came through like a ray of sunshine to scatter the dust motes of my anxiety.  Yes, we do appreciate the kindness and have more than an inclination to return it.  That is how kindness works.  There is a continuous lightness of being, a positive feeling that things will work out well.  I am grateful to all the people who turned my darkness to light.

Thank you!

The Meander: In this troubled world where everything seems so dark, selfish, and full of hate it is good to be reminded that there are so many more people who are kind, thoughtful, caring and filled with the milk of human kindness.

Still Here

Life does not end when Alzheimer’s begin.  That was the gist of the #Still Here campaign launched by the Canadian Alzheimer’s Society in 2016.  The truth of that cannot be denied but the necessity to make a campaign about it attests to the fact that Alzheimer’s disease culminates in life’s end.

Bert is definitely still here.  I have empirical evidence.

A few days ago I woke with an excruciating pain radiating from behind my left ear down to my shoulder.  It was perhaps the worst pain I have ever had, and that is coming from someone who has given birth.  It was horrendous.  I could hardly get out of bed and having succeeded could not get back in.   My Bert woke and was immediately concerned that I was in pain.   I got the pain medication Bert got the glass. To take it I had to fill the glass to the brim and sip carefully as Bert held the glass as I could not move my neck in any direction.  No relief.  Bert kept fussing wanting to know what he could do so I sent him back to bed.

As I could not sit, stand or lie down I knew I had to get some help.  As a caution I chewed two baby aspirins and decided to call for an ambulance as it was 2:15 a.m. in the morning.

Bert had fallen asleep.  Of course, he has to go with me.  He cannot be left alone and we would be fast forwarded into World War three if that was even suggested.  I must give thanks for small mercies however, as my Bert can still dress himself.  Instantly awake his first concern was for me.  He did as told then said: “I am ready but I did not shave.”  I told him that was OK and he could shave when we came back.

I got my Emergency Information Vial from the fridge and handed it to the Paramedics.  They were pleased and went through the twenty questions routine while checking all my vitals.  Having ascertained that it was muscular-skeletal in origin and not cardiac related I was placed carefully in the ambulance while Bert sat up front with the driver.  He kept asking them if they were going to make his wife ‘right’.   By now they were aware that my Bert had dementia from the vial information and from me.  I just wanted the ride to be over.  We were travelling on streets I travel almost every day but had never realized how rough they were as every jolt was another stab of pain.

At the hospital we went through the formalities very quickly and my Bert, clutching my purse, was with me every step of the way.  He had just one statement and question to anyone who came to see me:  “My wife is not right.  You can make her right?” As my Bert said this over and over I noticed he was picking his nails, a sure sign of anxiety.

So picture this. Here is a woman whose head is slightly bent forward who cannot move her neck so only the eyes move as each person comes to get information.  Seated beside her, clutching a woman’s purse is a man who keeps telling them to make his wife ‘right’.  If it did not hurt I would have laughed.  This could be a Monty Python skit, I thought. Others in the waiting room looked on curiously but kindly.

A doctor saw me after about an hour and a half, took one look uttered some medical jargon which translated to ‘all the muscles in your neck are in spasm.  It must really hurt but I am going to fix you up right away’.

The doctor left and fifteen minutes later a nurse came in and injected me with Valium, enough for a horse it seemed to me.  I also got two different pills and prescriptions for them and for a liquid rub.

As we left I heard two people talking:

“It’s a good thing she did not have to stay here.  It would take a crowbar to get him to leave her.  They held hands all the time.  That’s love.”

“He looked sorta cute with the purse too. “  I smiled but I was a bit sad too.  My Bert before Alzheimer’s would be just as loving, caring, protective and watchful over me, but he would have been also the proverbial bull in a China shop, ranting and raving and calling on all the powers that be to make his wife better and NOW!

The Meander: We know that emotional attachments go very deep in dementia patients.  Caregivers relish those moments of sudden unexpected lucidity, those moments when old narratives play out and love reigns.  The Bert wanting to make his wife ‘right’ is my Bert.  He is still here.

 

 

 

Conversations

Consider these conversations.   We are driving home from a double day date  with Lifeliner Jackie and her Bob when my Bert says: “Are we going to Canada”?  No use trying to explain, just enter his world and answer: “Yes, we are.”  I have not finished saying those three words when Jackie’s Bob pipes up with: “No, we are not going to Canada we are going across the bridge to Winnipeg.”  His wife and I share shrugs and looks as I distract with: “Lunch was very good today.”  The conversation turns to lunch.  Good.

“Bert, come and watch this.  Our Dutch son has sent us a video.  It is funny.”  We watch together and laugh.

“Where is he?”  Bert asks.

“He is in Amsterdam, in Holland.”

“No, it’s The Netherlands.”  That’s my Bert. He makes this correction as always.  “Tell him to come for a visit, or maybe we can go to see him tomorrow.”   This is an easy one to deflect as by tomorrow, actually within the next five minutes or less he would have forgotten the whole conversation and video, so I say: “That’s a good idea.  Maybe we can do that.”

“Sweet P, are we going to Europe tomorrow?”  Without thinking I answer: “No.”

“Why not?’

Fast thinking: “Because we have two doctors’ appointments and we cannot travel until we get those done.”  The appointments are real.

“Oh, OK.  We can go to England tomorrow then.”

“Yes, we will do that.”   My Bert smiles.  All is right in his world again. Gosh, you lie so easily, I tell myself.

Yes, caregivers lie.  It is a skill we develop over time and it is a critical one for both your loved one and for you.  You get more adept at doing it but every care giver will tell you it is not an easy one to perfect.

Imagine a child lying to a parent.  The same parent who taught that lying was not to be tolerated.  My Bert and I made a pact that we would not lie to each other.  Now I lie almost every day.   There is still a frisson of guilt each time but the alternative is so much worse.  If I were to begin explaining that going to England tomorrow is not feasible it would only result in frustration and anxiety leading to anger and distress.

Caregivers live in two worlds and become adept in Alzheimer’s communication.   At first it is hit or miss as you are being logical and Alzheimer’s world is illogical.  Why argue?  Why be angry?  It does not matter to your loved one.  You only make yourself frustrated and in a minute or two that anger is festering only in you as your loved one has forgotten all.   I find the ‘tear out your hair’ and ‘banging your head against the wall’ moments are beginning to lessen as I advance in Alzheimer’s University.

Of course those moments will continue to occur.   You are trying to communicate with someone who cannot reason. You can no longer begin a sentence with “remember”.  You cannot say:”I just asked you to” or, “I just told you!”  You can say that till the cows come home, means absolutely nothing.

Preparing dinner is wonderful.  Bert loves to help and seeing I am somewhat lacking in the culinary arts he was the cook for most of our marriage.   Now that my Bert is my toddler his kitchen duties are limited.

“What are you doing?  Can I help?”

“No, darling this will not take long.”

“You never let me help anymore.”

“OK.  You can help.  Please put that in the garbage for me.”  I point to the vegetable peelings.  He does it.

“What are you doing? Can I help?”

This goes on enumerable times as I get him to set the table, one utensil at a time, one knife, fork, spoon glass, and one plate while I get on with any preparation I have to do.  Every time my Bert asks to help, I give him one more item.  It is only the two of us but by the time the garbage is in the bin and the table set, whatever is in the oven is ready.  If I need more time I will tell him to go wash his hands.  If I am lucky he will wander around looking for the bathroom, becomes distracted when he sees his chair and sits because he has forgotten what he was going to do.

Alzheimer’s communication is a lot of distraction, deflection and accommodation.   You develop the skill for therapeutic lying.  Here is what makes it bearable and easier as time goes by.  You lie to protect, to preserve dignity, to console, to reassure, to show respect.   You lie because you care.

The Meander: To my fellow caregivers. We learn to live in two worlds. We learn so many coping skills as we travel this journey.  Learning to lie is just another of those skills.  Always remember we lie because we love.

Howler Monkey Club, Slothfulness and O Canada!

There were 17 travelling companions – 12 Canadians, three from the USA, one tour guide and one driver.   We were on a one week safari followed by one week at La Costa Resort in Costa Rica.

Off the plane in San Jose and there is our Tika Tour guide, the beautiful Patricia, our driver Manuel and our bus.  We are not staying in San Jose so luggage stored, we are on our way to our first safari stop Manuel Antonio Park then to our lodge the Costa Verde.  We stop at Biologica Carara Park for snacks and are surrounded by these squawking, extremely loud monkeys.  Patricia tells us these are howler monkeys and they are found all over Costa Rica, can be quite mischievous and will spit at you.  They emit a loud, grunting cacophony.

A group swings near and I grunt back trying to ape their sound.   Our group follows suit and hence was born the Howler Monkey Club.  For the next 14 days we started the day with a howl, ended it with a howl and howled  at every howler monkey we saw.

Costa Rica abounds with exotic wildlife, enumerable birds unbelievable flora and fauna.   It is all there and accessible.  You will get a front row seat, or choose a back row, to observe mammoth crocodiles, huge iguanas, beautiful hummingbirds, toucans, macaws, armadillos, snakes and more snakes and more.

Our driver stops abruptly and points up into a tree.  Ah!  There is a sloth!  Here is the confirmation that slothfulness is in truth a deadly sin.  The sloth was going from one limb to another a distance of maybe two feet. Manuel parked so we could watch it.  We watched, and watched,  and watched.  We howled at it.  No change just s l o w as molasses movement, almost undetectable.  The sloth had moved maybe ten inches after 20 minutes.  He had not rested.   Watching its slow progress was painful and awesome.

Every day of the safari was memorable.  Every day the Howler Monkey Club got friendlier and more connected.  Every day we perfected our howl and soon Patricia was sending word ahead that she had the greatest group of mostly Canadian tourists who had become Howler Monkeys.  We were not shy going into the next lodge or inn and howling to all and sundry.  It was obvious that we were a happy bunch and that happiness spread.  Soon everyone was talking about the group of happy Canadians who were Howlers.

Then the group split with tears and laughter and hugs and promises to keep in touch as The Howler Monkey Club.  Addresses exchanged,  I was given the complete list as First President.  Our three single ladies were spending the next week at a bird watching sanctuary, others were on safari only and eight of us Canadians were on to La Costa Resort. We howled our farewells.

Patricia had called ahead to let our tour representative at La Costa know the ‘Club’ was on the way.  We were greeted with a banner: “Welcome to the Howler Monkey Club.”  We needed no encouragement.  We did our howling with gusto to the delight and no doubt the horror of some guests. We had the usual introductory talk and bought tour tickets.

The resort was wonderful and at dinner we declared that this was the kind of camping we liked.  We had had an incredible experience roughing it on safari and would not forget the amazing sights but were ready for a bit of sybaritic vacation living.

After a long day of boat riding and barbecue we were eating pizza and having beer.  Our guide told us the next stop would be at the Pirates Cove a new restaurant and inn.  The owners greeted us and we discovered they were Canadians and the business was opened only two days.   Our tour guide had added this stop knowing we were all Canadians.  Instead of howling, I started to sing O Canada and all the Howlers joined in.  The owners cried as they and their two young children sang along. They were from Vancouver, had visited Costa Rica, fell in love with the country and sold everything they owned to buy the bar and inn.

We wished them luck.  Hugs were in abundance.  Next stop Cocos Bar, and then back to La Costa where we closed out the disco.

The Meander:  Travelling is freeing and full of surprises.  The Howler Monkey Club existed for about five years.  We are still in touch with the young honeymooners.  Some years ago I read the obituary of one member and sent a card to his wife.  She wrote back a lovely letter reminiscing about our Howler Monkey Club.  We travel for moments like these.

 

Iguanas and Me

If you travel in Central and South America it is almost a given that you will meet upon an iguana or two.  I have met a few.

Bert was behind the wheel in Venezuela.   It is one of our favourite adventures: rent a car, look at a map and choose a path not yet travelled to see what we may find.   We were assured that roads leading from Puerto La Cruz were all well maintained, even the unpaved ones.   We headed out and it was a beautiful secondary road that wended its way through high grassland, rolling hills and forests.  We passed some tiny villages but were looking for a particular one which, according to the road signs was having a fiesta and rodeo.

We rounded a bend and there in the middle of the road was a magnificent iguana.  It was huge and brown.  It calmly turned its head as Bert braked and looked at us.  It spread its dewlap  which to me looked like a menacing warning flag signalling: “Beware!”  I looked out the window and said: “Shoo”.  Brilliant! Obliquely staring back at me with an insouciance that seemed scornful, the iguana just stood there.  Bert could not go forward, had no room to go around so we just sat and looked at the iguana.   Bert blew the horn, I continued with my awe inspiring ‘shoo’, we threw it a half banana which it sniffed, ate but still it stood motionless.    We too sat immobile.

After perhaps thirty agonizing minutes the iguana waved its head from side to side and with one last supercilious look strolled across the road and disappeared into the bushes.

Our visit to the Galapagos Islands was taken with immense anticipation-  Darwin, Origin of the Species, huge turtles, wildlife endemic to the islands.  WOW!  We scrambled over some rocks and came upon an imposing marine iguana just lying there, basking in the sun.   It resembled its prehistoric dinosaur ancestors.  The guide was saying this was the only lizard that can live and forage in the sea and is found only in the Galapagos.  He also said something about them sneezing salt but I did not hear much as I was just gazing at the fantastic creature that seemed to hold the patent on looking seriously bored.   Soon he had had enough sun and so abandoning his warming ritual he slid into the water and soon was out of sight.  He was ready for lunch and had gone to feed on the algae that grew on the rocks in the sea.

Now it is some years later and we are Colombia.  We were admiring the peacocks, amazingly beautiful parrots, macaws, swans and flamingos.  What a show this was.  We kept finding more and more beautiful birds with different coloration.  Far up in a tree there was a rustling.  We looked up and there was the mother of all iguanas calmly jumping from one branch to another.  This was a green iguana.  They call this the ‘common iguana’.  Nothing about it looked common to me.  It seemed that it was much too large to be jumping from branch to branch which swayed as it landed.

As I looked up, the huge lizard jumped DOWN to the ground. “Jesus, Maria y Jose.”  I thought I would die.  The guide calmly told us they can do that kind of jump without injuring themselves.  Forgive me but I was not concerned about any injury but thinking about one landing on me.  I noticed the only calm one was the guide.  I saw one fellow putting his wife in front of him.  Some knight!  Many in the group looked up to see three more calmly eating the tender shoots seemingly oblivious to the stupid tourists gawking at them in fear and trepidation.

The first iguana I ever met I ate.   It tasted like chicken?   It was being digested before we found out we had eaten iguana.   We were High School students from Jamaica in Mexico City at an International Youth Conference.  We were busy most of the day but had lots of time for sightseeing and cultural visits arranged by the conference organizers or by our host families.  This night we were to be taken to an authentic Mexican restaurant for a fabulous dinner.  The meal was absolutely delicious and we tasted many different dishes. We all loved the meat enchiladas.

On the way home we asked our driver about the great tasting enchiladas.  Our driver did not speak English and was rather silent but suddenly he spoke with animation and very fast but we all heard ‘lagarto’, ‘ muy grande’  ‘delicioso’.  I had stopped listening at ‘lagarto’.  Iguana is food.  I asked: “Iguana?”.  “Si, si. Iguana.  Es muy delicioso.”   There was a collective gasp.  One fellow threw up immediately.   That was good as we concentrated on the clean up and not the iguana meal.

The Meander:  When I consider other culinary delights I have tasted on our travels this is by far one of the least strange though it headed the list for a long time.

Incidentally, the fiesta and rodeo featured a few heads of cattle for auction, some sway-backed horses and a girl of 14 years old who had the voice of an angel. Her family surrounded her and collected tips as she sang.  We could have listened to her forever.

Red Lines

Caregivers make decisions regarding every area of living both for  their loved ones and themselves.  Some are more difficult than others.

Though not inevitable, a decision whether to place your loved one in a Long Term Care facility will arise.  It is better to face the prospect sooner rather than later and learn every aspect of such a move before it becomes necessary.   As I write this, winged dragons are dancing in my stomach.  It is perhaps the most difficult decision a caregiver will ever have to make.

Thank goodness there is no dearth of information, advice, counselling, and help.  They all agree as to when you have to consider this option and the indications you cannot, must not ignore.  The major ones are:

Wandering: Nearly 65% of people with dementia will wander. There have been reports of patients being found a hundred kilometres or more from home.   There may be some elusive memory that triggers the wandering but really there has to be no reason.  That is the nature of dementia.

Falling: Dementia affects mobility especially in the later stages.  This is a particularly worrying one as it involves the safety of your loved one.  Sometimes the situation is aggravated by osteoarthritis, vision problems or other underlying health issues.   Additionally, the carer may not be physically able to care for a loved one who has fallen.  There comes a time when frequency will dictate a move to a more controlled environment.

Aggressive behaviour:  Here the patient becomes a danger to self as well as to the carer, family, friends, and strangers.   This is a crisis situation.  Safety becomes the major consideration.

Sundowning Syndrome:  The darkening day, night time or plain confusion between the two may result in this syndrome which manifests itself in major anxiety attacks and very aggressive behaviour.   This syndrome can put the caregiver in a very deep depression, as well as physical danger.

Escalating health care needs:  There may come a time when the caregiver just cannot tend to their loved one.  Their own health issues, their lack of training, their physical or emotional state becomes so fragile that caring for another becomes just too much.

There is no one to help:  When everything falls to the one carer then burn-out is almost a given.  The disease is such that friends and family may slowly disappear leaving just the one to cope.  Depression is the result.

The caregiver’s own health issues have multiplied, or become worse:   The caregiver now needs a caregiver.  Plain exhaustion will only aggravate the situation to the point where neither carer nor patient  can function.  One or maybe both need care.

Complexity of needs of the person with dementia:  In the later stages of dementia so much may be needed by your loved one such as walking aids, complex medications, help with eating, dressing, toileting, speaking, and equipment to help with basic daily living.  It becomes overwhelming for the caregiver to have their loved one living at home.  The decision must be made to place them in a facility where specialized services and equipment will be available.

Much credit is due the Alzheimer’s Society of Canada for the above.  Nearly every piece of research will echo these reasons for considering  a long term care facility but the Alzheimer’s Society has brochures on every aspect of this gut-wrenching decision and there are many to contemplate.

Despite the clarity of these red lines I believe each caregiver may have  additional ones.  Those would be personal and particular to the relationship they have with their loved one.   I bow to the expert advice; however I have two to add that is specific to my Bert and me:

My Bert does not know me:  This may sound trivial but our life story is such that the day my Bert looks at me and does not know who I am will be the day I know he IS the disease.

Physical abuse:  That is the culmination of aggressive behaviour.   He curses?  So, what?  He is angry?  He has a right to be.  However, the day my Bert lifts his hand to strike me will be a definite red line.  Hitting a woman, any woman is not in my Bert’s DNA.   That would be Alzheimer’s Bert not my Bert.

These two situations would ready me to make this most difficult decision.  My rationale is this:  As a caregiver to my Bert I am the one fighting the disease.  I am the one pushing back with love, care, hope, creating an environment of calm, kindness and comfort.  My Bert cannot fight against something he does not understand and which robs him of himself so I fight for HIM.  This new entity would be an alien, a walking disease.  It would be unbearable.

The Meander:  If I ever have to make that decision, I will do it out of love.  My Bert deserves that.  I will do my utmost to ensure my Bert gets the best care for his daily needs while I continue to care for his beautiful soul.  That is one thing Alzheimer’s cannot take from my Bert.

Alone But Not Lonely

When Ross Weber came on board he was a hirsute, grizzled, denim clad man who seemed rather diffident and cautious in his approach to people.  Soon the whispers and rumours began.  Our floating village was abuzz.

“Did you hear that the lanky, grizzled man is a multi-millionaire?”

“I heard he owned an island that he sold for $32 million.”

“He has never worked in his life.”

“He was a hermit and is just coming out into society.”

It was like a game of Gossip.  In fact that $32 million had grown from $7 million in about three days.  I was fortunate to be among those who got the truth from Ross himself.

I had not paid much attention to Ross except for the usual pleasantries in passing.  Then one night he asked a friend about my origins and she invited him to join our group which met to talk out on deck or in a cozy lounge almost every night.  He came but still does not know much about me as we were too interested in his story.  He opened up to us, speaking in brief sentences and then he said:

“I have two tapes.  They are documentaries about my life.  They have been shown in New Zealand and Australia on T.V.  If you can arrange it you can see them.”  We surmised he was either tired of talking or did not want to go into any details.  He was very shy.

Our Cruise Director was most accommodating and set up a viewing for the next sea day.  We told a few people and it was also announced through the ship’s public address system.  We garnered quite a crowd.

So here is a synopsis of Ross’ story.  Ross had a dream to own a farm.  Farmland on the mainland was very expensive.  At 27 years old he was able to buy his farm and a boat because his farm was the very picturesque Puangiangi Island off the coast of New Zealand’s South Island in the beautiful Marlborough Sounds. Most small islands resemble a cup turned down in a saucer, Puangiangi however, seems to undulate in the incredibly blue waters of the Sounds.  Ross shared his island with his flock of 60 sheep and the local birds.  The sheep provided meat, which he dried as he had no refrigeration and he grew vegetables.  He also grew his own herbal teas and grapes from which he made wine.  After 47 years he sold his island and was cruising around the world for a year.   The interviewer tried to get him to divulge the selling price of his island but was not successful.

While viewing the tapes, my interest peaked when I noticed the number of books in Ross’ rustic home.  The walls were lined with books.  There were books in boxes and other reading material everywhere.  Ross said he spent more than $1000. annually on books and magazines.  Ross showed his watch which he had got with a magazine subscription.  It had no wristband so he carried it in his pocket.  He found no need to get another because: “It still works.”

As Ross fielded questions we learned more about him. He said he was never lonely; that loneliness was for those who had nothing to do.  He said he worked hard and sometimes through the night caring for the sheep, battening down during bad weather, tending his crops and doing the myriad chores necessary for one man, living alone on an island.

Ross was adamant that you should not call him a hermit.  That he was not.  He had yachtsmen and deep sea fishermen visiting him to walk the trails on his island.  A few became friends whose arrivals he anticipated each year.

“They brought me practical gifts and had tea with me.  I had friends.  I had books”.

His conversation was current with a broad view of the world.  He did have television in the last few years and one room with electricity powered by solar power, but the books were what kept him informed.  They were his constant companions.

He was asked about needing companionship. His response was that he met some very nice women but they had other interests, jobs, relatives and did not want to live on his island.  He ended with: “I just didn’t find the right one.  However, I could always find the right book.”

There were those on board who wondered how soon some unscrupulous person would try to separate Ross from his money.  Those were the ones who did not sit with him and see those wise blue eyes look steadily into yours and see beyond the surface.    When asked what would have happened to him in an emergency with a look of surprise he simply said: “You just take care or you die.”  That was literally true as for the first 10 years he had no telephone.

The Meander:  Among the many fascinating people we have met on our travels, Ross is one of the most interesting.   He is living proof that you can live your dream.  He attests to the fact that the best non-human inanimate companion is a book.  As he so often affirmed: “I had my farm.  I had my books.  I lived alone but was never lonely.”

Note:  A version of this post first appeared in the summer 2005 Access, a journal of the Ontario Library Association.