Thirty years ago I received a Christmas gift. It was a hardcover perpetual calendar titled: Special Days: A record Keeper for Birthdays, Anniversaries and Special Days.
For thirty years I have used it, filling it with my special people and the dates that correspond to birthdays, anniversaries and other important occasions that merit annual acknowledgement. When I got that gift I had no idea it would become such a useful and necessary tool.
An important year end tradition embodied in this gift is the annual ritual of transferring the names, dates and my own classification system as to what is being celebrated to the new desk top daily journal.
Yes, I still have an annual journal/diary on my desk. At first it was only for a quick reminder. Now it is a critical memory resource. My desk diary tells me what I am doing when and where, with whom and why. It tells me as I turn the pages which family member or friend has a special celebration.
I need no reminder for many but recording the names gives me a moment to pause and to be grateful for the people I have in my life.
As I transfer the names and particulars I also put a red ’D’ beside the names of those who have died during the year. I won’t have to put them in the new desk diary anymore. Yet each year as I continue the tradition I will have a moment to pause, to reflect and to remember the impact they had on my life.
2023 was a many ‘D’ year. My red pen almost ran out of ink as I diligently freshened past ‘Ds’ and marked the red ‘D’ beside each new death.
For a brief moment I will mourn the loss again. There was a frisson of intense sorrow as I placed the ‘D’ beside a name of one who shared my birthday and later on beside the name of the spouse. Both lost in one year.
I remember too that despite my avoidance of technology how the digital age has allowed me to attend so many funerals. It is now customary to send out the Zoom link with the announcement of the celebration of life arrangements. Like it or not, this age of technology does have its silver lining.
I have not yet crossed through, blotted out, or overwritten a name. Instead they remain with just that ‘D’ that indicates they are in a different place, but remain here in my calendar and in my heart.
This year I also noted that although so many have gone the count of names in my calendar has not decreased. In fact there are three more than last year, including the birth of another honorary grandson, to be sent birthday cards!
Three more names mean that I am connecting to more people, still making friends who qualify for my perpetual calendar in perpetuity. That’s the silver lining of my thirty year old Christmas gift!
The Meander: “Time doesn’t take away from Friendship, nor does separation” – Tennessee Williams
Has the chaos and atrocities got you feeling down?
Do you feel helpless?
Are you wondering what is happening to our world?
Such questioning only add stress to our already stressful lives. Yet, throughout this year I have yearned to replace helplessness with hopefulness. In these very dark days I wonder why. I think it is all beyond me, that I should give up on hope. But I cannot because a life without hope is a life not worth living.
Let’s make this a holiday season to give as we are able. To share what we can. To be grateful that we have enough so we can help others. It does not have to be financial. Perhaps instead you can smile as you stand in line; phone or reach out to a friend; speak kind words to a stranger. Let’s try to spread hope.
Also, gift yourself too. Replace the news feeds that seem to relish blaring out the bad and the ugly, the atrocities and man’s inhumanity to man and woman, with good news stories. It may be hard to find enough good news. Those are not ‘sexy’; they do not bring high ratings. Evil sells.
When you run out of good news in the media look around to find it where you are. There is enough if we just pause from the daily busyness and despairing thoughts and look. Once again as you celebrate this holiday season substitute Christmas with whatever you celebrate. We all need Peace, Hope and Love.
We wish you Peace which is the Spirit of Christmas
We wish you Hope, which is the Joy of Christmas
We wish you Love, which is the Heart of Christmas.
AND
We wish you a bad news blackout!
May you have good health, and find myriad moments of joy today and always!
How do I love thee? Let me count the ways. I love thee to the depth and breadth and height My soul can reach, when feeling out of sight For the ends of being and ideal grace. I love thee to the level of every day’s Most quiet need, by sun and candle-light. I love thee freely, as men strive for right. I love thee purely, as they turn from praise. I love thee with the passion put to use In my old griefs, and with my childhood’s faith. I love thee with a love I seemed to lose With my lost saints. I love thee with the breath, Smiles, tears, of all my life; and, if God choose, I shall but love thee better after death.
For 53 years the couple would awaken and read or recite or hear a friend saying these immortal words. It was a January ritual begun on the first wedding anniversary.
On January 11, 2023, in love and remembrance only one mouthed the words in the cold morning. It was comforting.
Today, September 25th is a day that should have no special import but from now on may be a day for mourning, or not. On waking, the first thought, the first need was to hear this poem. The accompanying memory was of a soft slow issuance of breath, an afterthought it seemed. That breath came after a long pause and seemed to linger as it floated outward and upward and returned on the gossamer wings of a butterfly to settle with a soft caress. My Bert smiled. It was the final, soundless aspiration that filled the room.
But today is a day to put aside maudling sentimentality and contemplate present reality. Today marks the first year of living a strange unfamiliar singleness.
It was a poignant year not of mourning but of doing. Too busy advocating, informing, educating, sharing, caring, remembering, living. There were a few tears outweighed by a plethora of remembered joys. Tears wiped away within the ever surrounding arms of family and friends.
Today I meander through our song, gaze at albums, twinned biographies, and I laugh at our shared moments of joy or sigh at our shared moments of grief and wonder at the miraculous journey of two lives entwined.
And today I share our love poem with friends, families, all who love and mourn and remember their loved ones who are gone but have not left.
The Meander: Love endures. There is an everlasting delicacy in loving someone after they are gone. There is blessing in memory.
We wheeled him across the street. One helium balloon already declaring in bright, bobbing shiny proclamation: “It’s My Birthday”.
He was well dressed. I was told that when he was asked what he wanted to wear he had only said: “Blue”. He was dressed in a lovely blue shirt, gray dress pants and dark blue slipper shoes. He was well groomed having just had a haircut five days before. He smelled nice.
Destination was the Italian restaurant a short block away. All was ready including the 14 guests that would celebrate this special day.
“How old am I?” The voice was tentative, slightly raspy, low and slow. The once talkative man was showing the ravages of Alzheimer’s and the onset of aphasia which began just two weeks before. The rock had become shifting sand.
“Today you are 90 years old”. The still bright eyes opened widely and the ghost of that most beautiful mischievous smile broke through. “That… no, you 90 too?”
There was laughter.
There was laughter as a favourite niece got him speaking German, and Dutch then it doubled in volume when he answered in Swedish.
The food was great, the conversation lively and the 90 year old man was happy to be the VIP, the celebrant, the focus of all around him.
A conglomeration of cards, balloons, flowers, odd items surrounded his plate. There were pop-ups, noise makers, puzzles, musical renditions of the birthday song all coming from the cards, gifts and trinkets. More helium balloons decked his chair, tied to show off the witty sayings displayed on them.
He did not say much. Each question was passed on to his wife with: “You tell them”. When she answered with an encouraging word or mnemonic aid to have him join in answering he would nod or say one or two words. And he smiled.
It was a very happy occasion and for three hours his usual tiny sliver of view of the world became a whole pie. He ate. He drank. He smiled. He saw the entire street. The cars, the bus, the gardens, the small plaza were seen at earth level, not from the constricted view from his third floor window.
Those who had not seen him for a while marveled at how well he looked. He reached for my hand and held it even as I fed him.
There was a parade going back to the home. It was a celebration.
His place at the table was crowded with his birthday gifts so some had to go into his room. The noisiest, brightest, most comical pop-up cards were shown around to his companions in the room. Flowers were on the window sill. There was no guessing who the birthday guy was as his chair was festooned with the bright helium balloons. Many came by to look and those who could, chatted, touched, stroked and wished him a Happy Birthday. Then everyone had cake with tea.
“Okay sweetheart. See you soon”.
“Bye, my Paula, soon.” It was the clearest he had spoken all day. He was my Bert.
August 17, 2023
It could have been bleak. It was not. It was filled with happy memories and I was happy to recall the last birthday party. We had no idea then that in 39 days that world view would expand to encompass the entire universe. None of his guests knew then that the next time they saw him would be for another celebration, of a life well spent.
This year his birthday party is with the stars while I was treated with lunch at a friend’s home. There was love, and I marveled at how much the world, life, business, pleasure, sadness and joy, like glass in a kaleidoscope, shifts and reassembles as you adapt to a new reality.
We walked down to the lovely creek that meanders through the property. There has been so much rain it is the fullest I have seen the water. It had risen to be lapping at the footbridge and as it rushed with musical notes to the lake it seemed to say: “You done good, girl”.
Almost every day there is news of more book bans, challenged books and a host of new education guidelines for books to be used in schools.
Books have been challenged for as long as there are books. The recent spate is so filled with vitriol it boggles the mind.
Also, this weekend I am mourning the loss of two pro-book voices. I do not use the word icon too often given its definition but the retirement of two CBC Radio hosts brought that word to mind. I will sorely miss Eleanor Wachtel host of Writers & Company and Shelagh Rogers host of The Next Chapter. Those two programs are staples in my radio listening. They introduced me to Canadian writers of all genres and to many authors I am sure I would not have met but for their programs and their commitment to showcasing the best literature.
A prized possession is the recording of an interview I arranged with Malcolm Gladwell and Eleanor Wachtel. That recording is now even more precious.
So what’s worth repeating? It is Alone but not Lonely a post I wrote some years ago under the Travel banner extolling the virtues of books as friends. You may read it here: https://paulasmeanderings.com/alone-but-not-lonely/ Or URL https://wp.me/p9c4ml-cY
The Meander: You cannot ever be lonely if you have a book. Keep on reading.
It is a New Year and there is so much that’s new. I have a new schedule. I have a new life of living without another, the one who had been partly absent, but only partly.
Most bewildering is the new ID. I am signing documents that ask for my marital status. I hover over Married then move to Single and then uncomfortably to Widow. I place a tick as the status is officially correct, officially.
I have no problem with the word widow. The hesitancy comes from the fact that for such a long time I was a widow in waiting or in training but now that it is a fact the training turns out to have been woefully inadequate. How do you own a state of ever mutating feeling?
It has nothing to do with living alone. I passed that test long ago. Yet somehow it was incomplete because he was still here. He was less present than before but much more than total absence.
I am beginning to think that I have major fault lines that need mending. Family and friends remind me that the ‘Firsts” are stressful, demanding and catalysts for deep mourning that may resemble depression. I am told to mourn, to grieve and take time to BE. I understand, yet somehow this widow identity has so far been the worst issue in the process for me. How trite!
The first Christmas has come and gone. Children and friends made it beautiful if poignant.
The first New Year’s Eve has flown on the wings of memories that are full of laughter and quiet aloneness but with comfort and feeling of still here. He remains a gift that keeps on giving despite the absence.
Anniversary number 54 was spent enjoying dinner and a theatre performance in the company of friends who are another type of family. The two ‘widows’ knew the muddle that resulted in the tickets for the performance and the anniversary date being the same was no mistake. In our hearts we knew the two friends who are no longer here made that choice for us. They decided this first, this gathering would be to celebrate, not mourn.
There are many more ‘firsts’ to come. Somehow I am able to think that those firsts will only become days to remember on the personal calendar. That personal calendar has many firsts from other losses and triumphs. I am so grateful that there are many more dates to celebrate than to mourn.
When we meet, let’s talk about the happy memories, the firsts which can be met with equanimity and remember that sometimes death can be a gift of love.
The Meander: Let’s greet each other with love and cheerfulness and for heaven’s sake don’t call me the widow Paula!
Paula de Ronde dreamed of writing a book – but never this book.
Q: You were a senior librarian with the Toronto Public Library. What is your relationship with books?
I love books. I am in love with words. Reading has been my number one pleasure all my life. Still today I wake up with a book and go to sleep with a book. It’s more than a habit, it’s me.
Books are gateways to the world. They provide the greatest pleasure anyone can enjoy on their own, or with family, friends and a community. Books are for information, recreation, education. They transform, inspire and transcend the mundane.
I wanted to be a librarian to put people and books together for them to discover the world and the knowledge in it. An informed society results in a more compassionate society. Knowing this led me to my added advocacy work on behalf of libraries and their value to their communities.
Q:What made you write this book?
No one is prepared for this diagnosis or to be a caregiver for this particular disease. So, given my background, when those fatal words were uttered I donned the librarian’s hat and instinctively knew who to ask and where to look. As I found information, sorted out help and support, read others’ accounts of the dementia journey and experienced the convoluted Alzheimer’s world, I realized that I needed to share the information. A dementia diagnosis will always be an ambush but may be less traumatic if you are aware of where to find help. This is a situation that begs for help, professional help and appropriate community resources.
I also wanted to support, enlighten, educate, guide and most of all give as positive a take on the disease as I could based on our own experience. The more I learned about the various levels of help, the less traumatized I felt. Peer support was invaluable.
Caregivers face a life sentence of 6 to 20-plus years. Those years spell sacrifice and a dramatic change for at least two people. Your loved one has the disease but it affects you just as much. So the caregiver must carve out a life that lasts for that sentence. Being informed of what is ahead will help you plan to live with as much joy as can be had.
Q:Your book reveals the daily challenges and joys of a caregiving relationship between a wife and her beloved husband. What’s been the toughest experience/challenge and what’s brought you most joy?
The disease is a tragic comedy and sometimes the comedy is more evident than the tragedy. It has taught me to live in and out of small. Once you accept the fact of the inevitability of this disease’s trajectory, with death always hovering, you begin to notice the small things.
The irony? The toughest challenge and joy may come from your own memory.
I did not recognize how much I was grieving until the day my Bert entered the living room half dressed in pull-ups ready to watch a video with me. This was my rock, my knight, the proper gentleman whose purpose was to make me happy. My Bert is my greatest fan, my encourager, for whom I could do no wrong. Here was my partner in joy and sorrow. I looked at him and knew that Alzheimer’s was taking him from me and I grieved.
Another enormous challenge was accepting the fact that my Bert would end up in a Long Term Care facility. It is perhaps the most gut-wrenching decision a caregiver ever has to make.
What has brought me most joy?
I am not sure I have experienced the greatest joy as yet. Here again memory is most evident. Our travels are amazing. Our life experiences both good and horrible are over the top both before and now during this journey. As the disease progresses we have learned to look at ‘small’ and take the moments of joy that come in the most unexpected ways. It is the days my Bert looks at me and in the midst of chewing says: “I love you very much.”
I smile as I remember the counselor from the Society who just held me tight when in tears I asked: “Have you ever had a client rail at the fact that she could not stand one more ‘I Love you’ from her spouse?”
It’s the little wave I get as I enter the home and the loud ‘that’s my wife.’ It’s how he remembers our son and daughter-in-law and the familiar gestures he makes that confirms the memory. It’s laughter. Oh, how we laughed with our friends and family and still laugh. His spontaneous gift of laughter is always evident. His innate chivalry is intact.
It’s the fact that the disease may be taking away my Bert’s personhood but not his character. My Bert equals joy.
Q:What do you think Bert would say/feel about your book, if he could?
I have read a few paragraphs to him and he will say something like: “That’s me? My head is not right.” I read the happy parts and those that refer to his past in The Netherlands, the war, his siblings. He has for ages told me I should write a book and he likes to hold it. I am grateful that once again my Bert has been the enabler for another of my dreams. I am so deeply sorry that he does not know that he is the star of what he holds in his hands. If he understood he would be out declaring to the world that I am the greatest writer that ever lived!
Q: Memoir writers often contend with the issue of privacy – what to put in, what to leave out. How did you resolve it?
It took some doing but once I decided to put our story into print, the motivating factor was that it had to be real — truthful, unencumbered by too much modesty and recorded in a way that illustrated the good and the bad. There were parts I did not have to include as just saying the words dementia or Alzheimer’s brings up certain pathologies of which even the uninitiated are aware.
However, there is no getting away from some private moments being put ‘out there’ especially when the dynamic duo are spouses. What was important was that in sharing our story I hoped to provide credible and helpful information to readers and to do that I had to share the whole story.
Q: You have a way with words. Is this your first book? If so, what took so long?
Like many, I have been a closet writer for a very long time. I have a collection of bad stories, poetry, extended stream of consciousness articles plus travel journals that I visit and cull maybe once every five years. I write every day in a journal. The truth is that I suffer from imposter syndrome especially after I have read a good book. Yet even as I denigrated my own writing I was aware that good writing is simply a good story.
Writing throughout this journey is my therapy but more than that, I wanted to spare others, to ease the journey just a little by allowing them into my own story, to introduce the tools that worked for me and perhaps can work for them with a little tweaking to fit their particular situation.
Now that the genie is out of the bottle I can’t wait to do another book. Did I say that?
At the beginning of each New Year there is that chore that is immediate and necessary. It is to transfer vital information from the past year to the coming year.
That includes birthdays, phone numbers and new information learned that must find a place in the current year. Most important are the new people met who have already become important in my life. These are the keepers that give continuity to the year that now dawns.
January 1, 2022 I wrote in my new desk calendar:
“Oh, how I wish this is a better year than 2021!” I then went to January 1, 2021 to begin the transfers and burst out laughing when I read:
“I hope this year will be better than 2020!”
Into my head popped the Yogi-ism: “It’s like déjà vu all over again.” I thought Yogi Berra, the New York Yankee Hall of Famer certainly had the most appropriate expression for my own déjà vu as recorded in the desk calendars.
Did anyone think the world would be in an even more devastating grip of the latest variant of the Covid-19 virus, Omicron? Its vice-like hold is pushing us backwards to 2020, spreading with lightning speed and accompanied by new restrictions, depressive news, mental anguish, isolation, frustration, and fear for loved ones.
Yet there is hope. Happy New Year! is the usual greeting. The many beautiful holiday wishes have not yet faded. There is less fear though the immediate question following the cheerful greeting is: “Have you got your booster shot as yet?” Last year the question was: “Are you fully vaccinated?”
And there are moments of gratitude too. A friend was able to do her philanthropic visit to her project in Malawi in between a brief travel advisory hiatus and more travel bans. Our little family was able to be together for a time on Christmas Day as we are essential caregivers to Dad. A very special group of friends gathered to share lunch in Niagara-on-the-Lake. As even more restrictions are announced that limits indoor gatherings to five people another friend said: “Thank goodness our tiny bubble is three people and we are all triple vaccinated so we can still have tea or dinner at home with one another.”
Our family has been to Greece. We love that country very much but we are all somewhat bemused that we are learning the Greek alphabet, in Canada, through the spreading of a virus. Somehow the naming of hurricanes with Greek names does not have the same impact. Perhaps we prefer whole names to single letters and live in hope that this virus is not the omega of our existence.
Yes, 2022 may seem like déjà vu of 2021 but it’s not entirely so. There are significant differences. We are resilient. We have vaccines and soon virus fighting pills. The arsenal grows as we learn more and more about it. We have not given up and we won’t.
The Meander: Covid-19 is not the omega of our world. Instead it can be the alpha of our new beginnings, new visions, and the harbinger of a new normal that is being created even as we try to figure out what that will be. Let’s continue to live in Hope.
