Bittersweet

Why bittersweet, I wonder, not sweetbitter? How did this compound noun come to be created in this order, putting painful first and pleasurable second? (Yes, yes, I could open my OD of English Etymology to delve into the history of the word and perhaps discover a suggestion as to why it’s constructed this way . . . but that will only lead me down a rabbit hole . . . .)

I was thinking about the exact definition of “bittersweet” yesterday as my new step-dog and I walked a (tiny, tiny) portion of the Bruce Trail. 

I was trying to focus on living in the exact moment - truly appreciating the last of the bright autumn trees, the crunch of fallen maple leaves we were walking on, the difference in temperature between the sun and shade. 

But earlier I had read the BBC’s explanation as to why they don’t use the word “terrorist” after several Guardian articles about the Israel-Hamas war, so my mind kept circling back to the power of language.

When I passed a map of the entire Bruce Trail my first thought was, “Oh, Doug would have loved this walk.” I don’t know how much of it he walked - he lived in Southern Ontario for most of his life but I remember many stories about hikes in Algonquin Park, none about this trail. Still, my thought process was sweet first - then bitter - then sweet again.

We loved planning long walks in the UK, we loved the walks themselves, we loved having walked them. Hours spent pouring over maps & making picnic lunches, hours walking, hours reminiscing about the highlights of the walk. Win-win-win. 

I used to want to walk every mile of every walk, start to finish, including every side trail. Doug taught me to relax a little - and jump on a steam train for a mile of two, go off on a tangent at the risk of missing a few miles of the exact path, spend longer in a museum or at a ruin or foraging for mushrooms or berries, or admiring a view - then make up the difference with a bus at the end of the day if necessary. Once day we stopped for “just an hour” at an airplane museum in Carlisle because it was marked on the OS map. We spent the entire morning there.

I was reminded of that visit when David and I were in Germany last month. We went to the Technik Museum in Sinsheim; I had no idea how big a collection it was, or how fascinating I would find it. In four plus hours we barely scratched the surface. I sent Doug a postcard - even knowing he can’t read it, or even understand it when it's read to him. I was here, I thought of you, I thought of us. In this way I can witness what we had, what we’ve lost, and what I have. 

And how incredibly lucky am I to be able to turn to David and say, 'Doug would love this,' knowing that David will understand? 

That was the week of September 11th. For the first 17 years after the hurricane, I woke on September 11th every year and thought “Ivan.” Last year I was on holiday with my Mum, and the significance of the date didn’t register until mid-morning. This year it was late afternoon before I realized what day it was. It’s possible there will come a time when the entire day will pass without my acknowledging Ivan (though unlikely because that is also the date of 9/11, and the news coverage of that anniversary reminds me of my own before/ after life-changing moment).

In the library this week I picked up a novel in which a Caribbean hurricane plays a part in both scene-setting and plot. For many years I would have put it down again, but this week I checked it out. I may even read it before it’s due back. 

Thanksgiving Monday - another day of ‘remember whens.’ I was lucky enough to spend the day with my dear friend, Donna. We reminisced about Thanksgiving 2019 which we spent with our husbands and another couple. 

Doug moved into long term care soon afterwards, and the two other husbands have both since passed. Despite the many changes in our lives since that meal only four years ago, Donna and I are both still thankful for fundamentally the same things now as then. Sweet  . . . bitter . . . sweet. 

Random Thoughts on Bravery

Thankful Grateful Blessed

I have discovered that I am marking the passage of years by the appearance of this sign in Doug’s care home. Thanksgiving - again? Has an entire year really passed since last Thanksgiving? I find myself taking stock of my year - accomplishments & disappointments, joys & sorrows, blessings & burdens - and thinking about what I can (try to) achieve in the last months of this year. 

Live music at Doug's care home; a post-Covid joy I'll never again take for granted 

My problems fade to insignificance when I read the news, and between reports of wars and deaths I interpose Jay Rayner’s restaurant reviews and the Culture & Lifestyle rabbit hole that leads to. Recently an actor whose work I admire said of another actor (whose work I don’t know) “ . . . this woman showed up and claimed her seat at the table with nothing on her face. I am so impressed and floored by this act of courage and rebellion.”

In the past I might have scoffed, “That’s courage?! Come on!” But today I try to imagine what it might be like to be a person who is expected to present a certain image in public, or even a person who wears make up on a regular basis. I have zero lived experience of this, so I can’t judge the degree of bravery it takes for someone who is photographed a zillion times a day to leave her house makeup-free. 

Visiting Doug: I rarely wear make up so this is not a show of bravery on my part

(I have chosen to crop his face from the picture; I'd rather remember him as he looked, not as he looks)

As a creative writing teacher, I ask my students to include an aesthetic statement when they submit a piece of work. I explain that if I have an understanding of what they are aiming for, I’ll be better position to mark their work in a way which will be more useful to them. Not only “I think this worked well because/ you may wish to revisit this because . . . ” but also “I believe you met your objective in this way/ perhaps your desired result is let down by this section because . . . ”

For some classes I use as an example the poetry of Rupi Kaur, who writes in lowercase, almost punctuation free. She has explained that this is not a random, meaningless choice, but “in the gurmukhi script... all letters are treated the same. i enjoy how simple that is. how symmetrical and how absolutely straightforward . . . a visual representation of what i want to see more of within the world: equalness... so in order to preserve these small details of my mother language i include them within this language. no case distinction and only periods.” I choose to believe the ‘bare faced’ actor has as compelling an explanation for her choice, and wonder if she considers herself a courageous rebel. 

Back to the newspaper: I have become my paternal grandmother; I remember her reading the obituaries every morning and I do the same. So many speak of the “brave battle” a loved one has fought, with cancer, with heart disease, with a mental illness. Apart from my ambivalence about the war metaphor so often used, I question the use of “bravery” here, but remind myself - again - that I can’t guess at someone else’s lived experience.

Spring 1973 - my sister and I with our Granny Ells

I speak of Doug as “living with dementia” knowing it was not a choice he made. It’s not anything over which he has any control. He IS a brave man - he’s made lots of courageous choices in the past, and done many things I consider deserving of the term. (If the Toronto Star’s archives weren’t kept behind a paywall, I’d link here to his reports from the front lines of El Salvador’s civil war.) I am thankful that I knew him when he was well, and was able to witness his courage.

The ping of an incoming email. A friend, who ends her note with, “You are brave and good.” I hope she is right. I hope that I am brave and that I am good. I’m grateful that she can see those characteristics in me, especially on the days when I cannot. 

On to the book reviews where there will be one that applauds the bravery of the writer to tackle a certain subject, to expose secrets, or to dare to craft a novel in an innovative way. I tell my students they are brave to write at all - and brave again to share their writing with the rest of us. I am blessed to have students who are willing to push themselves far from their comfort zones, with the added bonus that their confidence helps me grow too. 

The weather has turned. A long, warm autumn, with hot summer-weather days has, overnight, become the start of winter, with the first snowfall of the season causing two highway accidents north of North Bay over Thanksgiving weekend. Next time I visit Doug I'll bundle him up, and together we'll brave the cold. 

A path divided

“Two roads diverged in a yellow wood . . .” Frost’s The Road Not Taken was a grade school standard when I was a child, and I’m surprised that I can’t recite it by memory. (As ever, when I notice my memory fail, I reach for paper & pen in order to draw a circle, make it into a clock adding numbers and setting the hands to ten past eleven, two to two. Still ok. So not a sign of memory loss then, just a sign of aging.) 

For years when Doug and I walked together, I led, if only because I had the longer legs and the faster pace. Turning to make sure he was behind me became second nature, until it became clear that I couldn’t be sure he would follow me, and we started to walk everywhere hand in hand. 

Long after Doug moved in to long-term care and I walked by myself, I’d stop and look over my shoulder. Even though I knew he wouldn’t be there. I thought this would be a habit for life. That I would never stop pausing, looking over my shoulder, making sure he was there. 

But Dementia created a fork in the road, and neither of us can truly follow the other. I thought about this a lot over Labour Day weekend, which was glorious - warm and sunny. I sat on my deck with a coffee first thing in the morning, before joining my family for a local walk we all love. Doug loved it too, and we often walked it together when he was still able to. 

After that walk I visited him in his home, where he was on isolation due to a respiratory illness (he has since recovered!) so I wasn’t able to take him outside in his wheelchair to feel the sun on his face. I was in full PPE, unrecognisable even to myself. I looked at him in his bed, knowing he was unaware of the gorgeous weather, and I tried to pretend for a few moments the fresh Ontario peaches and local raspberries I’d brought him were a treat that in some small way made up for his quarantine, and the fact that he hadn’t joined me for coffee on our deck, or for a walk with the family.

In the beginning he lost his words. Now I’ve lost mine. I read other people’s words to him whilst holding his hand. If I can make it through a visit without crying, I consider that a win.

I am currently reading him non-fiction (half-memoir, half-history), a book about the American Civil War which we both enjoyed reading together in the past. It was only published in 1988, but I am surprised by the language. There are words I won’t read aloud, so I change them or skip those sentences . . . which is making me think about censorship, change, freedom of speech, banned books, my past offences . . . all subjects I’d love to discuss with Doug. (One podcast I listen to calls them “deep dive conversations.”)

What I want to tell him is this:

After over six years’ deep friendship with a woman I first met via the Breakfast Club (a woman Doug knew well), I recently met her son. It is, in retrospect, extraordinary that our paths hadn’t crossed before, as I’ve met her daughter, son-in-law, sisters, nieces, grandchildren, great niece and great nephew, brother-in-law . . . Doug and her husband were very close friends.  Her son has a busy life (job, pets, friends) and for the past many years he was his wife’s primary caregiver. And then there was Covid. Last year he was widowed; this year we met when his Mom suggested we might be compatible travel companions. 

We are indeed compatible.

A door has opened unexpectedly. I have walked through it, and embraced this new relationship. If our roles were reversed, and Doug had lost me to dementia, so that I was no longer able to go to the movies with him, have dinner with him, travel with him, I hope he would do the same, and allow his heart to expand. I am choosing to continue living my life; my new companion is not replacing Doug, and he understands - with first hand experience - what it is to lose someone to an illness, what it is to say goodbye again and again, what it is to grieve the loss of someone who is still alive. He knows that Doug is my husband, and still very much a part of my life, and we are navigating the circustances of our relationship with care and love for all.

“Decisions and events. Some we control.  Others we don’t. But we do what we have to do to survive and create lives around what we have.” (Karen Dunn Skinner)

Too Late

As my great decluttering effort continues I am still finding scraps of paper with notes from Doug - often something as ordinary as a shopping list, sometimes a deeply personal note to himself. His handwriting in and of itself is a message from the past, the words add another layer of meaning. 

a love note

When I was a child, mum read me poetry at bedtime, often from the anthology of her childhood, Other Men’s Flowers. (“I remember, I remember/ The house where I was born,/ The little window where the sun/ Came peeping in at morn (Hood)”) and dad told me stories about his childhood, growing up on a dairy farm during the Depression. (“When I was a little boy in Nova Scotia . . .”) 

 looking up the second verse of that poem led me down a delightful rabbit hole 

I don’t remember being read fairy tales, but I must have been (I do remember being so impatient to read them to myself that I rushed through some words. For several years all my princesses lived in “places” - which made sense - doesn’t everyone live in some place or another? I distinctly remember the day my grade one teacher, Mrs. Sears, asked me to slow down, and I discovered that Cinderella was attending a ball held not in a place, but in a palace . . .)

I believed in fairy tales. 

For years I have held tight to that fantasy despite all evidence to the contrary. Unicorns, rainbows, good luck, hard work, a positive attitude, a stiff upper lip, a glass half-full . . . My fiction rarely ends with a classic HEA (happily ever after), but there is often hope, or the possibility of hope.

the ending of 'Moon Jellies' (from my short story collection, Notes Towards Recovery)

Doug and I had a fairy tale wedding. I would like to say our marriage was also a fairy tale - but that would be a lie. We were (we are) both human. Imperfect. Fallible. Though with the clarity of hindsight I see myself as the most flawed.

There were days I came home from work to discover the breakfast dishes still sitting in the sink where we’d left them hours before. There were occasions he didn’t meet me somewhere at an agreed time, or ever. Frequently I assumed he’d done nothing all day. It’s too late for me to apologise to Doug for being short tempered back then, when neither of us knew what he was dealing with.

I wish . . .

I wish . . .

I wish I’d known he was already struggling with memory issues. I wish we’d talked about it.

I wish I’d understood then how unimportant things like clean dishes were. I wish I’d not been disappointed by what I assumed was his lack of energy. 

I wish . . . I wish . . . 

Too late. Too late now to wish I’d reacted differently.

A short note recently rose to the surface of a pile. It's not one I wish to share. I must have said something unkind about his memory; he must have been heartbroken by my callous disregard for his feelings. 

 in a sad, sad note, covered with happier memories of our Two Together railcard & tickets from adventures we shared in 2015 & 2017

This is one thing I’m glad to know he’s forgotten.

I’m ashamed to admit I don’t remember that day, that moment, what I was thinking, why I lost my temper, why I didn’t keep silent, why I didn’t separate the illness from the person I loved. 

That I broke Doug’s heart then breaks mine now. 

I wish I had apologised immediately after I spoke. 

I hope apologised immediately after he wrote the note. 

I hope I asked his forgiveness. I hope he forgave me. 

I don’t remember.

(And now it's too late.)

On this day in history . . .

August 4th, 2012

Eleven years ago Doug was full of energy, exceptionally happy . . . and so was I. 

This photograph is full of stories about our wedding day: the beer keg was sent with the wrong spout, so moments before the Beer Store closed my sister & David loaded up the car with bottles; the wildflowers were gathered by Mum & my niece; Mum, Tom, and I picked the berries for and made the jam; my brother-in-law (pictured) was living with a brain tumour at the time and passed away three months and two days later. 

I see all those memories- but most of all I see Doug. Happy, energetic, wonderful Doug. 

We loved our wedding.

"love is more thicker than forget" - e. e. cummings

Closed Doors (Things I Cannot Know)

There are questions I wish I’d asked my grandparents while they were still alive. There are questions I wish I’d asked Dad. I have recently been on holiday with my mother; I tried to ask her all the questions . . . but I know in twenty years I’ll realise there were some (many) I’ve forgotten.

So much I didn’t ask, don’t know, and will now will never know. (I am not the only person to feel this way. How many times does Munro explore this very subject in her fiction?!) 

Doug and I had many conversations when we understood his memory was fading, but there are many serious things we didn’t discuss. I know if he predeceases me he’d like me to have his body cremated in the most environmentally friendly way possible, and then he’d like me to sprinkle his ashes along some of our favourite canoe routes and walking paths. This I can, and shall do. 

I know he hoped that I would never place him into a long term care home. I did not honour this wish. It was one of the most difficult decisions I’ve ever had to make, and I still struggle with regrets, despite knowing that I was no longer able to provide the best possible care for him, despite the horrors of Covid, despite the reality of his health today. Two of his sisters cut all ties with me because of that decision, and Doug lost the window of time they might have spent with him.

As impossible as it seems now, we did not fully grasp how dementia might affect him . . . until it was too late. In some ways, certainly, it was a blessing that we were so ignorant of the future. And yet, knowing that one day we might not be able to have any sort of meaningful conversation would have been helpful back when we could still talk to each other. Back when I could still ask “what would you prefer if . . . ?” and “what if . . .?” and “but what if . . .?” 

I am deeply grateful that I do not have the right as his wife (and power of attorney) to even contemplate MAiD. It is not a decision I could make on his behalf. I will struggle if ever I have to make a choice around euthanasia with regards our cat, Piper. Although I will never want her to suffer, I’ll no more be able to ask her if she’s in pain or not, content or not, than I am able to ask Doug.

One of the many things we did not talk about was what to do if we lost each other in a way other than death. We vowed to “travel together as husband and wife through stormy days and still, for better or for worse, for richer or for poorer, in sickness and in health, all the days of our lives until death do us part.” It is not death which has separated us, but dementia. Even when I am sitting right beside him, I am lost to Doug, and he is lost to me. 

I will always love Doug. I desperately miss the man I fell in love with, married, and made such a happy life with. He is no longer that man, but he is still my husband, and I love the person he has become, albeit in a very different way than I loved the man he was when he was well.

But now, more than ever, I wish we’d talked about a future we couldn’t imagine. 

I am hanging on to his insistence that I “follow my bliss” when we first met and I told him I was thinking of returning to school. It was advice he often repeated, to me, to himself, to others. “I say, follow your bliss and don't be afraid, and doors will open where you didn't know they were going to be. (Jospeh Campbell)”

(I took all these photographs in Tuscany, Italy in June, while I was on vacation with my Mum. It was a holiday Doug would have loved.)

1,204 days later

On March 11th, 2020, Doug and I shared a treat together at his care home. I don't have a photograph to jog my memory, and have no recollection if we opted for hot chocolate and cookies, or root beer and bag of potato chips. We shared treats all the time. I often ate meals with him. I kissed him on his cheek every time I arrived to visit, every time I left, and many times in-between. 

And then - Covid. 

Wednesday June 28th, 2023 the masks rule for long term care homes was lifted and Doug's home opted to allow staff and visitors to choose to wear, or choose not to wear, the face masks which have been part of our lives for so long. When I arrived and confirmed that I could indeed go without a mask, I didn't hesitate; I tore it off.

It was a wonderful experience to walk through the halls and smile at the staff - and receive full smiles in return. I always smile at the residents, but for the past three years plus they've only been able to detect the smile in my eyes. 

Reaching Doug, I knelt down and kissed his cheek.

After the hurricane I promised myself I would never again take for granted the joy of turning on a tap to fill a glass with drinking water. I am promising myself now that I will never again miss the opportunity to smile at people - loved ones and strangers - or to kiss someone I love. 

2014: our annual 50-miles-in-a-single-day walk

Maybe this was preparation, unbeknownst to me at the time, for the long haul of Covid-within-Dementia