News Flash

I awaken to hear that a new report on Dementia says 45% of caregivers experience distress.  My immediate reaction was:  “Tell me something I don’t know.”  My next thought was: “I suppose the other 55% are only prone to the intermittent bouts of depression that does not last long enough to warrant attention.”  I have no doubt that every caregiver has those moments when the weight of care is, for a brief period onerous, too hard to bear.  Then you gird your loins and fueled by love, carry on.

The report was from the Canadian Institute for Health Information and looked at the impact on unpaid caregivers who were looking after their loved ones at home.  It mentions burnout, the emotional toll and the necessary extra daily activities among other factors that result in this distress.  Each situation is different but for me the most relevant is the emotional toll.

When friends inquire how I am doing I say I am fine, just tired.  That is true. Yes, I am physically tired but it is the emotional stress that gives me the moments of greatest distress.  When my husband holds a nightly conversation with his mother’s photograph, I am happy he has found a connection to the past that still resonates.  Yet, that is Alzheimer’s world. When I consider how my Bert and I worked together, planned together and the many chores he did with pleasure which falls on my shoulders now, I curse having to live in Alzheimer’s world

When I have to cajole my Bert to have his bath, or entice him with a sweet dessert for him to eat his salad, that is Alzheimer’s world.  When I have to lay out his outfit for the day, knowing my paragon of sartorial splendour would look like Bozo the clown if left to his own devices, that is Alzheimer’s world.

Two findings from the report were surprising.  It stated that:

In 2016, unpaid caregivers spent an estimated $1.4 billion on out-of-pocket costs. They devoted an average of 26 hours a week to providing care, compared with 17 hours for caregivers of other seniors.

The amount of the out-of-pocket expense was enormous I thought, until I began to add up the extra amounts expended for my Bert.  When multiplied by the number of unpaid caregivers it is a fact.  However, the real surprise was the number of hours of care.

The book, The 36 hour day, is almost required reading for caregivers of persons with dementia.  Some refer to it as the ‘Bible’ of dementia care. When I consider that I live a life for my Bert and also a life for myself, or try to do so, then my day is a 48 hour day.  In my opinion 26 hours a week even as an average, does not come close.

I never knew how much I valued my private time until Alzheimer’s entered my life.  My Bert and I were always together, but that was by choice.  I did not have a shadow permanently attached.  I could go to the bathroom without anyone coming to ‘see where you are’. I could make a shopping or lunch date with a friend.  Heck I could go to the hairdresser, manicurist, medical appointments, a Scandinavian trek with friends by myself.  I could go to Tai Chi or yoga, go on the computer or just get a cup of tea, my current book and curl up in my chosen spot to read without interruption. All that was lost. My shadow went everywhere with me. I have given up those activities that I cannot now fit into the two days Bert attends the Day Programme also known as his club. Every moment, every activity takes into consideration my Bert’s needs, wants, his schedules, his appointments, the state of his mind, his happiness.  Every plan is subject to the whims of the disease.

I applaud the researchers and authors of the report.  It validates what has been empirical knowledge. I hope it may result in some real support for caregivers.  Currently, the focus is on the disease and the patients.  However, Dementia is unique in that it may be the only disease that negatively affects the unpaid caregiver as much as it does their loved one.

The Meander: Perhaps my greatest emotional toll results from the illogical behaviour, the deep memory loss the disease has brought to my Bert.  My heart aches each time I want to say “Remember….”  I catch myself and I am filled with regret because I can no longer reminisce with a husband with whom I have created and shared a lifetime of amazing memories.

 

 

 

The Drop Sheet

Bert had me smiling at breakfast.  He has kept his sense of humour and makes me laugh. That is a saving grace as we make our journey through Alzheimer’s World.

My Bert can be a messy eater. You can tell where he sits at the dining table because of the many crumbs around the chair. The usual napkins are not doing a good job, so I take out some extra large dinner napkins and tell him that from now on we would use those.  I place one on his legs tucking the ends into his belt.  It completely covered his lap.  Bert, giggling, looked down and said: “ I have a drop sheet.”  We just roared with laughter.

Was Bert remembering the painting business he owned long before I met him? That reference, plucked from the recesses of his mind was so apt, we laughed together and started the day and the week off on a happy note.

At lunch Bert seemed to be waiting for something although everything was on the table.  I said: “Is everything alright?”  He answered:  “Where is my drop sheet?”  Another big laugh. I guess from now on a napkin will be a drop sheet.

In Alzheimer’s World the past is more real than the present. I know by dinnertime he may just spread the napkin on his lap and remember nothing about his paint business, drop sheets or our conversation. For now, I savour the moment.

There is a knock and I answer the door. The delivery I expected has arrived.  I take the package and sign for it.

“Where is the ticket?” Bert asks.

“Er…umm which ticket?”

“You have to get the ticket.  I have to bill the customer.” The penny drops.  He is back to being CEO of  his courier service.

“No, love, the man delivered to us.  He takes the ticket back to his company.”

“Why did another company do the delivery?”

“Because that company does deliveries for the one sending me the package.”  There is still a puzzled look but no more questions.

Two days later.  “It is forty-five dollars.”

“ Um, forty-five dollars.”

“Yes, that is the charge for the delivery.  You have to collect it”

“Oh, alright, I will collect it tomorrow.  No problem.  Would you like a cup of tea?”

“Oh, Yes. That would be good.”

“I want one too.  Put on the kettle please.”  He goes to the kitchen and I say: “You can deliver it to me too.”

“Ok, but you will have to pay me.”  He glances back with a look that says clearly: “Gotcha.”

Bert sold his company in 1995.

….

Dinner is finished, dishes done and Bert is doing his last chore of the day – closing the shutters.  The guest room is last as usual and he  spends more time there than it takes to close those shutters.  I know what he is doing.  Soon, I hear a chuckle and out he comes.

“I just finished talking with Moeder (Mother).  I told her I did the dishes and put them away.  She said she hoped I washed them better than the mussels.”  We laugh.

Bert ‘talks’ to his mother’s photograph every night.  The mussels is a reference to the war years.  He has told me he and his mother would wait two or three hours at dawn to get a pail of mussels.

Sometimes she tells him not to ‘fall off the sacks’ which is another war memory. He and his mother would go to farmers  and ask to pick up any stalks of grain left on the field.  After receiving permission it might take them the entire day to pick up a full sack of grain.  On one particularly good day of garnering,  Moeder tied two full sacks to the back of her bicycle and told Bert he would have to walk beside her as she could not take him as well.  According to Bert, as she started to pedal slowly so he could keep up he took one flying leap and was atop the sacks of grain.  Moeder was amazed, terrified and worried about him falling off all the way home.   He would end with: “It was hot, I was tired. I was not going to walk home.”

The Meander:  Bert demonstrates his love for me each morning he sits across from me and watches me eat my oatmeal.  Bert does not eat anything that resembles ‘pap’ (porridge) or even cereal.  Ask why and he will tell you: “That’s all I had during the war.”  Not quite true but it is mussels, yes, porridge no.

There is a poignant exigency to hold on to Bert’s memories.  How long will he remember?  I have heard them hundreds of times.  When he forgets, I will remember for him.

How do you do it? Alzheimer’s Society Help.

 

Once the diagnosis of Alzheimer’s disease was confirmed my first reaction was:  Oh my God, what do I do now?   I think this is the usual reaction.  Bashing your head against the nearest wall (bad headache), tearing out your hair (pre-mature baldness), screaming to the high heavens (how uncouth)or jumping off the nearest cliff (splat) may come to mind but none of that will work

So, what do you do?  Find help.  In some cases that may be easier said than done but fortunately in my case, living in Canada and in a City with a high  senior population and services gave me an edge.

Once you have confirmation, if you just go on your computer and start a search for dementia or Alzheimer’s disease you will be able to build that cliff from maybe just one percent of the information you see and it would still take you a while to hit ‘splat’.  Once your eyes uncross and your mind un-boggles find the home page of your national Alzheimer’s society, www.alzheimer.ca in Canada. Help is immediate as you will get direction to your Provincial and Regional and Local offices.  You may be tempted to linger and start reading right away when you see the Quick Links.  Don’t.  Go directly to your local office.  You will thank me when a quick call results in an invitation to visit accompanied by a brief conversation on the kind of services provided.

Why stress ‘local’?  On my very first visit I received information about current programmes, workshops, seminars, activities for both loved one and caregiver, jointly and separately.   First Steps and Next Steps are just two seminar series that help you get a grip on the disease, the impact on both partners and future considerations.   They are exactly as stated.  What to do and expect first, what comes next including making a will, financial issues, medications control, real  estate, funereal funeral considerations,  all done by the appropriate professionals. Your local office is connected to resources and services.  No need to wonder why all this is important.  Let’s be practical, some things had better be done before your loved one has lost too many brain cells to know what is happening.  The legal ramifications alone can be beyond horrendous. Also, as long as your partner can function well,  I know that two heads are better than one.

But, best of all I was connected to a counsellor.  I could call the office ask for a particular person, tell her/him my issue and be guided, helped, and given information so that I could make informed decisions about my Bert. Local also meant that the places I needed to go, the services I needed to access were all within easy reach.  My local office had not just a description of the service and address, they also had a name.  I could ask for a person.  They also made some calls on our behalf.

The people in my local office are extraordinary.  They will help you to curb your attempt to take every brochure available, explaining what should come first.  They are professional, caring, experienced and excellent listeners. They are the biggest boosters of caregivers and remind you to take care of you first, so you are able to take care of your loved one.  This is one of the PhD courses at my Alzheimer’s University.  It is so difficult to do this. Caregivers need to be reminded and your counsellor will do the reminding..

This was my first stop and it is still a most important link.  If I have not connected with my counsellor for a while I will get a call just asking how things are or to give me some relevant information.  She is aware of my Lifeline, the wonderful support group, as all we Lifers are connected to our local Alzheimer’s office. She applauds that.  She knows that the Lifers connection is very important.

The Meander:  Sometimes we find it hard to ask for help.  Being a caregiver will soon cure you of that.  You cannot do it alone.  You cannot do it alone. Ask for and take any help you can get.  We all need it. My Lifeline family and my Alzheimer’s Society local office are two of my companions on this journey.  I am well served and blessed.

 

The Threat

Today we are off to The Seychelles.  The island is Mahé home of the capital city Victoria.  The port does not have a dock big enough for our cruise ship so we have to go in by tender.  On the long ride to shore there was quite an animated discussion as to how small this place was. The port talk on board had mentioned that Victoria was perhaps the smallest Capital City in the world.  Having been to Pitcairn Island I argued that Adamstown, Pitcairn Island, with a count of 54 as total population for the country was the smallest.  The question became how do you define a city?

The next observation concerned the name of this city, Victoria.  We were on a world cruise and could recognize whenever we arrived at a former British territory, because in every one there was a Victoria town, city, clock, square, street, mall, building, or market, take your pick. Another marker was the left hand driving.  It gave new meaning to the sun never setting on the British Empire.

On shore, we (two couples) hire a driver/guide who told us he would show us the entire island and take us to the best beach restaurant in Mahė for the Sunday Brunch.

Mahė is beautiful and Sergio our driver/guide was knowledgeable.  He drove up to high mountain rain forests, down into deep valleys.  He showed us beautiful beaches, amazing rock formations and pointed out exotic flowers and birds.  A most interesting sight was the Coco de Mer which is a twin coconut indigenous to the Seychelles.  They are a protected species.  On seeing the male plant (L) and the female (R), overheated imaginations brought waggish comments, titters and guffaws. We were nonchalant  having been given the heads up, er..bottoms up? by Sergio.

 

We walked through a part of Morne National Parc, once a large slave plantation.  There is a viewing pavilion which was opened by Queen Elizabeth II in 1972 and from there the view was absolutely stupendous.

We drove by the very rich and secluded Baha’i compound and Sergio told us the current wife of the President was the daughter of the leader of the Baha’i   Community.  He was quite proud of the fact the Baha’i Faith was founded in The Seychelles.

It was a very hot day and we were hungry too.  Thankfully Sergio announced we were only fifteen minutes from Anse Takamaka beach where we would have lunch.     What a relief!  A gorgeous beach, an indoor /outdoor restaurant set with bright tropical linen, flowers on every table, long cold drinks being made by the bartender.  We looked over at the villas and all decided this would be a perfect place for a relaxing holiday.  But now, on to the Sunday buffet where everything looked wonderful.

“Hello my friends.  What would you like to try first?  You may come back as often as you like.” The smiling serves welcomed us and gave information about how each dish was cooked.

“Seychelles cuisine is a fusion of Creole, African, French and more.  We have something for everyone. This huge fish is a red snapper and there are four curries, many Creole salads, chicken, pork, curried octopus, different kinds of rice dishes, fried plantain, curried bat which is a specialty….”

“Hold on, curried BAT!!!???”  I asked in astonishment.

“Oh yes, they are fruit bats and they are delicious.”

I shuddered. I would pass on that dish, but adventurous Al looked at it and said:

“Curried bat?  I think I will try it.” Immediately, Peg, Al’s wife, looked at him in horror and said: “You put that in your mouth and you will never kiss me again.” It was not only the vehemence of the statement that got us laughing but the look on her face of consternation, disbelief and other emotions that defied description.  The depth of her abhorrence gave a gravitas to the statement that far outweighed the situation. It was a profound, heartfelt and dire threat.

Lunch was absolutely delicious.  We ate, and ate.  Al never touched the bat.  Obviously, he preferred the kisses.

As we were leaving, Sergio walked us over to see the giant tortoises, indigenous to The Seychelles resting in their enclosure.  They were indolent.  They are HUGE.

Sergio delivered!

The Meander:  The Seychelles will always be remembered not only for its beauty but for this experience I call the threat.  I have yet to meet someone without a phobia.  How were we to know that for Peg, it was bats.  For Peg, eating the enemy was just not on.  For me, another page for my story book of travel adventures. Unforgettable.

 

Gibraltar and Dreams

“Phew!  That piece of fish was as big as a surf board.  I can’t believe I ate the whole thing and most of the chips too.”

This was perhaps our fourth or fifth visit to Gibraltar, The Rock, and as usual we had just finished a late lunch at Roy’s Cod Plaice (sic) in the main square.  It was almost a ritual.

Another ritual was to walk to the corner where this jolly, Cockney fellow sold inexpensive watches. The first time we met he offered me one of his $10.00 watches.  I told him I had just bought one in a store just up the road. “Hahah, I bet you paid a lot more for it and it tells the same time.”  Everyone laughed.  Again we listened to his spiel before buying another $10.00 watch.  But now it was time to return to our ship.

Too full, read lazy, to walk to the shuttle service pick up point, we hailed a cab and requested to be taken to the pier. Immediately, and as is his norm, Bert started a conversation.

“Where do you think we come from?”

“America”

“No, no!  We are Canadians but I want you to guess where we were born”.  After a few tries Bert told our driver he was from the Netherlands then asked him: “Where do you think my wife was born?”

The driver smiled and said: “America”.  A laugh and then: “Wrong again.  My wife is from Jamaica.”

“Jamaica! Jamaica!  Do you know the Papine Market?”  I looked at him in amazement. “Of course, I do.  How do you know it?  Have you been there?”

“No, my lady.  My mother was an evacuee to Jamaica during World War II.  She lived in Gibraltar Camp and every Saturday she would go to shop at the Papine Market.  She always talked about her time in Jamaica, about the food, the fruits, the wonderful, kind people.  She loved it.

There were tears in his eyes as he spoke of his mother who had died recently.  He refused our fare.  He kept holding on to my hand and shaking Bert’s hand for a long time.

A year later I was introduced to Dr. Diana Cooper-Clark, a Professor at York University and Jamaican by birth. We bonded immediately.  It happened that Diana was in the middle of doing research on Gibraltar Camp, Jamaica’s role in the Holocaust and the Jewish refugees, most from Poland and the Netherlands who were housed at the Camp.

The recently published (2017) Dreams of Re- Creation in Jamaica: The Holocaust, Internment, Jewish Refugees in Gibraltar Camp, Jamaican Jews and Sephardim, is the result of Diana’s more than 18 years of meticulous research and her commitment to bring this little known piece of Holocaust history to light.  It is at once a paean to her Jamaican background, a lifeline for the survivors, education for Jamaicans and the world, a moment in history captured for posterity and recorded with love and respect for the survivors, their descendants and the Jamaicans who enfolded them in love during a terrible time in history.

Dr. Cooper-Clark took some survivors and descendants  to Jamaica for a reunion in November 2016.  Yes, they visited Papine Market, the camps and St. Andrews Girls School, one of the schools the children attended courtesy of the Jamaican government and the generosity of Jamaican Jews. She tells of the many tears shed as they remembered.  Observe Diana as she talks of the reunion and you can see this is one moment in her life forever indelibly engraved in her heart.

The Meander:  Serendipity? Coincidence?  I do not know.  Gibraltar Camp is now part of the Mona Campus of the University of the West Indies, Jamaica.  Many students have gone to lectures at Gibraltar Hall, have walked Gibraltar Lane and Path have seen the old ruins, remnants of the little city on the banks of the Hope River without knowing their import.  Diana has given face and substance to the place, the buildings, the people, and the times.  This is history with heart.

Just one more thing for me to do to close this particular circle:  I will be sending a copy of Diana’s book to the John Mackintosh Hall Library – the only public library in Gibraltar.  Who knows?  Maybe that taxi driver will see it and read it and fill in the gaps of his mother’s story.