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.