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.
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!
Thank you to “the good doctor” for this endorsement! If you wish to keep up with this blogger you may follow him at: https://www.burlingtoneye.ca/TheGoodDoctor Here is what he wrote.
Blog vol 3. 33. Dealing with Alzheimer’s Disease, Some Encouragement.
At her recent visit, Paula De Ronde, a patient of mine, brought me a copy of the book she has written, My Bert has Alzheimer’s: Caregiving is Living for Two. From 2011 to 2022, Paula was the caregiver for her late husband, Bert. She wrote down her meanderings and compiled them in a book that really captures the daily demands of being a caregiver.
Two words come to mind as you read Paula’s account: intensive and love.
Intensive – the day-in, day-out demands of being a primary caregiver, and then the community of peers and local day programs helping to share the load. The underlying thoughts throughout the entire account are the preciousness of Bert’s life and his loving relationship with Paula. One of the most beautiful moments in the book is when the day program staff sets up a date night for the couples in their care. Every detail, from invitations, decorations, menus, lighting, music, serving, then, later dancing, was done with such attention and care. Just wonderful, so inspiring.
Love – the relationship between Bert and Paula deepens through the disease. Paula’s desire to learn as much about Bert’s disease as possible in order to help him (and a lot of others) shows the depth of her love. I was especially impressed with Bert’s tender heart and love for his wife, even as inhibitions came down with the development of the disease. Bert, you are my inspiration, I hope I can be that man under similar circumstances. The love of others was expressed in real and tangible ways: the way that the PSWs (an under-appreciated group) helped Bert as he entered the long-term care facility, the daily care of looking after Bert and actively involving him in the daily routines of toiletry, dressing, feeding, and so much more.
Her tone in the book is upbeat, her sense of humour contagious. Paula has done a great service for caregivers in encouraging, educating, and especially, sharing her journey.
So many people are caregivers to spouses with Alzheimer’s or with other health concerns. This work is so important and so difficult. I am continually impressed and humbled by my patients who persevere in caring for their spouses through really heart-breaking situations. The love and care are wonderful to see.
The rest of us need to remember to support the people in these situations. We can make such a difference in even small ways.
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.
During this challenging year there were three things that kept me going:
My Bert – the daily visits are the highlight of each day. He is happy in his world, content with his surroundings, full of good cheer, and best of all he still knows me.
Friends – they sustain, support, encourage, care, and will call even when I do not. Thanks for being such understanding friends.
Laughter – I find that more stress only result in greater laughter. It is good medicine.
We have weathered another year living with a pandemic. We languish, bothered by the uncertainty and loss of control over our daily living, yet awaken each day with gratitude to be alive. The rites go on as we welcome new lives, see love blossom, and attend weddings, and funerals via Zoom. Even so we dare to hope that one day we will be free to be, not as we were before but better.
Here is a special greeting:
May you have the Spirit of Christmas which is Peace;
The last few days have weighed heavily on all aspects of our lives. We are living in a global pandemic. I miss seeing my Bert so much. We make the best of phone calls, ZOOM visits and revel in the simplest pleasure while separated.
Then the Military Report that revealed the horrific conditions in Ontario’s Long Term Care homes was published. There was a general wringing of hands, wailing and gnashing of teeth even from those who knew or should have known. The report revealed in bald, bare facts the long standing atrocities that were perpetuated against our most vulnerable.
For those of us who had intimate knowledge of the system, for those who lost their loved ones during this pandemic it was no surprise. If there was surprise it was to wonder how the system was allowed to become so degraded. It was sickening to read the report.
We are aware that when people become products for profit they become expendable losing priority to the greater and more important issue of shareholder profits. It is the reason we have advocacy groups solely concerned with residents and families in Long Term Care. It takes constant vigilance and proactive, consistent effort to oversee the well being of our families and friends who are residents.
The fact that my Bert was in a home that did provide good care and security; that his caregivers were dedicated, committed, loving and went beyond the call of duty to look after our loved ones, did not take away from the immense sadness felt as I read the full report. It only made me resolve even more to be an advocate on behalf of the community of which I am one.
The telephone call came as I deliberated ways I could be a voice in the Long Term Care solution.
“Paula, do you have the news on? Turn it on. There is a report of another black man killed by the police in the US and it is all on tape.” I could hear the agitation in my friend’s voice.
I turned on the T.V and I still cannot get the image erased from my mind. I witnessed a modern day lynching in living colour. For a moment, just like George Floyd I could not breathe.
Myriad emotions fought for space. I was sad. I was angry. I was enraged and felt a deep despair. Playing out in front of me was 400 years of hate, fear, mistrust, and the negative branding of black people as being less evolved and thus less human than a white person.
I watched the protests and marches. I listened to the prattle of various pundits. I saw the lowest denominator of humanity look for excuses, take advantage, and indulge in riotous behaviour.
The irony of the greatest proponent of building a wall to keep asylum seekers and immigrants outside and now cowering behind a hastily built third wall to keep citizens out of the ‘Peoples House’ is risible.
The double irony is that the descendants of slaves are the ones who suffer the greatest racism yet are the only ones in America who are not immigrants. They never bought a ticket, filled in immigration papers nor were they refugees or asylum seekers fleeing war or pestilence or poverty. They were not seeking a better life. They were cruelly captured, dragged from their villages, separated from their families, chained, penned in the filthiest conditions imaginable, endured a most hazardous ocean voyage, whipped, died and thrown overboard like so much garbage, then put on a block and sold as chattel in a foreign land where wealth was determined by the number of slaves you owned.
Those who came later, who actually chose to be immigrants are dumped into the same pool because, well, they are black. If you are black you can never achieve first class status. You are forever a second class citizen.
That racism that is embedded in the DNA of white America still sees a Black President as an aberration, the exception that proves the rule and still vilifies him.
The thousands of George Floyds over the years that have suffered systemic racism in all its virulent forms do not have a chance. They were and are still at the mercy of those who clothe themselves in the impregnable hoods of white priviledge.
Friends across the spectrum and from five different countries have all asked: “What can we do to change this?” There are ideas being floated the simplest of which is, as the Bell mental Health slogan suggests, ‘Let’s Talk’. Being black in America is certainly a major mental health issue.
It is simple but not easy. Already the cowards who are witnessing what I hope is the beginning of a new era are saying the opposite: “Don’t get into any debate with any black person because no matter what, now they will be always right.” That is the racist DNA talking. At a time when we should be engaging in meaningful conversation, of learning about each other, of trying to understand, they would disengage, crawl into their bunkers until this all blows over and then they can be the ones who emerge, as usual, always ’right’.
Let’s call out the little incidents of biases and not in a whisper but right out loud. Recognize when you are being patronized or used as a token to fit someone’s notion of diversity. My American friends of all stripes talk of being ‘ashamed’ ‘sad’, devastated’ ‘despondent’, ‘pessimistic’. They can do what I cannot. They can vote. It is a powerful tool in any effort to impel change.
Yes, I am a shy one but last Christmas, while shopping in my local grocery store the line to the cashier was so long that I remarked: “Wow! Will we get out today?” The man behind me laughed and began to sing Silent Night. The next commented: “Yeah, wish we get out by nightfall.” Two women joined in the carol as did I and before long we had quite a choir singing Christmas carols.
Sometimes that is all you need to demonstrate the commonality of human beings or as John Lennon and Paul McCartney wrote: “All you need is love. There’s nothing you can do that can’t be done.” I know little things can mean a lot.
The effect of the blatant lynching of George Floyd echoes the fight of Martin Luther King, Jr, the resilience of Nelson Mandela, the selfless charity and humility of Mother Teresa, and so many others. They achieved their approbation through continuous and prolonged dedication to their cause.
400 years of oppression will not evaporate in a day or a year or ten. To right the wrongs that will result in a more just society will take everything in us that makes us human, and the will to stay the course no matter how Herculean the task or difficult the journey.
I just hope it will not take 400 years.
The Meander: It took a virus to highlight the darkness of Long Term Care;
It took a global pandemic to open our eyes to recognize the real heroes of our day;
It took the recording of the murder of another black man to underline the evil that is racism.
There is global condemnation. Dare we hope that a new day dawns that will usher in a better future for all?
I did not sleep well the night before we landed in Dakar,
Senegal. I knew the reason. We
were going on tour to Ile de Goree. So
many of my friends had visited and told of the emotional toll it took as they
walked through the House of Slaves.
The House of Slaves on Ile de Goree is a Museum and UNESCO
World Heritage site that commemorates the darkest period of man’s inhumanity to
man – The Atlantic Slave Trade.
Goree was the holding port for slaves. Of the
approximately 45 million human beings who were torn from their homeland to be
sold in the New World, nearly 20 million left from this place to face the treacherous
Middle Passage crossing. First begun by
the Portuguese, this trade in human ‘cargo’ went on for three centuries from
1536 to 1848.
At the entrance to the Museum stands a statue depicting a female and a male slave. They are bare breasted. The woman holds onto the man her face uplifted. The man’s hands are lifted high holding two parts of a broken chain. He too looks upward. There was an involuntary hush as we walked from the statue and through the doors of the Museum. The slave house had rooms measuring eight feet by six feet in which up to twenty persons, shackled by their necks and arms were held. They were allowed one daily bathroom break. Families captured together would most likely be separated here as they would be once they arrived in the New World. If you came to this holding pen you had already lost everything including your name. After all cargo was a numbered commodity not a person. You got a number and your next official identity would come from the person who would buy you and therefore owned you.
Dare to show resistance, to rebel and you would be relegated to two small cells, so small you were unable to stand up. You would be shackled, seated, with your back against the walls. A hopelessness seemed to emanate from these two cells. Doom, bleakness, darkness, defeat, despair hovered in the air. My stomach knotted. I gasped audibly interrupting the guide.
“Sorry,” I said.
“It is OK. Many people cry in this place. In fact Nelson Mandela was almost in the same place you are when he wept.”
We continued the tour and came to the Door of no Return or ‘last look’ door. I took a picture, the same place President Obama had had his picture taken. I cried. I could not help it. I imagined the heartbreak as each one realized that once they passed through this door to descend to the waiting slave ship it would be the last look they had of their homeland. Now they were losing the last vestiges of belonging, of home.
They had lost their personhood when they were traded for guns, trinkets, food. There was a formula to assess the value of this human ‘cargo’. Children as tall as a man’s leg, females tall enough to reach a man’s chest no matter their ages were desirable, even more so if they were virgins. Men were assessed according to their weight. If a man weighed less than 60 kilos they would be taken but kept in a special holding room at Goree and ‘fattened up’ with beans to ensure a better price when sold.
The strongest, fittest, tallest men were the most valuable. They may
be worth a gun or two or more. No
problem, as these were going to bring a high profit when re-sold in the New
World. Also, they were the ones most
likely to withstand the rigours of the Middle Passage crossing.
I struggled for breath as I listened to the atrocities, to the barbarism. I was ashamed at the description of the ‘cargo’, the ‘goods’, the ‘numbers’. They were human beings, mothers, fathers, sons, daughters, princes, princesses, chieftains, innocent children. There was no nuance or balance to my emotion. What I felt was raw, rough, deep anger. This was beyond cruelty. And this abominable trade lasted for over 300 years!
I had studied this bit of history; I had watched the movies
and documentaries, seen the depictions in books and listened to erudite
speakers. No cinematographer, no author,
no speaker or history scholar could capture the emotion of seeing this up
close. Walking through the Stygian
gloom of The Slave House shook me to the core.
This was evil, pure and not so simple.
The tour did not end there though the rest seemed immaterial
until we visited St Charles Church, built by the Portuguese in 1658 and the
place where you got the best view of the House of Slaves and Ile de Goree. I could just envision the pious and devout
congregants leaving mass and looking at the island, maybe see a ship loading
the ‘cargo’ and mentally counting the profits the ‘cargo’ would bring.
The Meander: I wept when I first visited The Berlin Wall and wept with joy as we were at the re-opening of the Brandenburg Gate by President Bill Clinton. I wept at Auschwitz and said a prayer for my late brother-in-law, Theo, who was held in Dachau. I weep for sadness and weep for joy but my tears at Ile de Goree were the deepest most hurting tears I ever shed. I was weeping not only for the 45 million but also for the current 20 or 30 or 50 million living in slavery. For these the chains remain unbroken.
Oh, by the way, we are Celebrating Black History Month!
