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

Holding On & Holding Hands

For as long as possible I held on to the hope that somewhere deep inside some part of Doug recognised something about me. The sound of my voice, the feel of my hand in his, my scent - something, anything. And then I held on still longer. 

No one who knows me was the least bit surprised: I struggle at letting go. I cling to things long after their useful lifespan. Relationships which aren’t beneficial to either party, bits of paper (theatre and train tickets) I may scrapbook (‘one day’), more books than I’ll ever read in my lifetime, mementos which continue to collect dust after they’ve ceased to spark joy. 

There are two bookcases, every shelf double-stacked, with Doug’s collection of non-fiction. Sometime in the future, when I can no longer stack my books against the sides of our other bookshelves, or when Piper knocks them down yet again, I will box up his through tears, and deliver them to a place where they can be discovered and enjoyed - maybe even read - by someone else. 

I am better at giving away his clothes to people who need them. Better, but his kilts, a suit we bought for a super special dinner, his Maple Leafs hockey sweater, a few of his favourite ties, and a few other items are still hanging in our bedroom closet. His last pair of walking boots and his poles are tucked into the front hall closet. His golf clubs and guitars are taking up space. 

When Mum and I cleared out Aunt Em’s flat we shared memories about the objects we were packing and donating until we ran out of time. It was lucky, we agreed, that anything we wanted to keep had to be shipped to Canada. (Though I do regret being quite so harsh in my refusal to bring back much at all, I have photographs to remind me of the happy memories the objects sparked.) We left her wardrobe for last, so that we had to rush through everything that still held the suggestion of her fragrance. 

But Doug hasn’t died. And nothing in our house smells like him. (And, in reality, he no longer smells like him. Not the Doug I knew and loved when we lived together. That’s gone, along with his voice, his mobility, his recognition of me.) 

‘Whose needs are you meeting by visiting your husband?’ My therapist asks me. 

Today I can speak the truth she has known for much longer than I have. Mine. My needs. 

He doesn’t know me. There is nothing about me that differentiates me from any of the other people who care for him. Even when I read him one of our scrapbooks, recounting our past adventures. Even when I sneak us away to an empty room and take off my mask to show him my face in one of the rare moments his eyes are open. Even in his heart of hearts. (And yes, this is also a blessing. I am confident his intelligent, active mind is not trapped inside his deteriorating body. That would break me.)

But I know him. I recognise him. I need to sit beside him, to feed him some of his meals, to hold his hand, to read to him, to hug him, to kiss his forehead. I don’t know how else to express my love for this man. The person he was, the person he is now. 

The other day he was napping, and, whispering a memory of another time we’d tried to share a single bed, I squished myself next to him. His hand had been raised above his head and it fell over my shoulder. As close to a hug as I could imagine. 

I am holding on to that moment.

2018: happier times, when we were able to hug each other

Remembering

“At the going down of the sun and in the morning/ We will remember them.”

October sunrise

I often open my classes by reading, or asking a student to read, a poem (or several poems). The week of Remembrance Day we read some of the classics: Binyon’s For the Fallen, Magee’s High Flight, Gould’s This Was My Brother, and spoke of others. We also read the poetry of other wars, other losses, including two poems from Dikra Rider’s chapbook, There are no Americans in Baghdad’s Bird Market. 

We spoke too of 9-11. Ancient history to a few of my students, pre-history to most. (Yes, yes, I was momentarily startled, as I always am when I realise that my having vivid lived experience of that day makes me decidedly old.) And I looked at these bright young people and wondered - when they are my age, how will they remember the pandemic of 2020-22?

It will be interesting to compare the literature of 2022 with that of 2042. In twenty years’ what will a pandemic background look like? What will we have learned? (Note my strength-based optimism! Partially bravado . . . because I am not entirely sure we have learned anything yet.)

Kerry Clare recently wrote about Emily Urquhart’s essays which are set “against the backdrop of the Covid-19 Pandemic.” 

And my work in progress is very much set during the time of Covid. It can’t not be. The social isolation and the choices my characters have to make are all vital to the causal unfolding of events. (I hope this is a novel. It’s supposed to be a novel. But some days I write pages which are clearly just me trying to make sense of things and have no place in the work itself.) 

My Mum, sister, and I recently, quietly, marked the anniversary of Dad’s death.

“At the going down of the sun and in the morning/ We will remember them.”

On September 30th I wore orange in memory of those who survived, and those who did not survive, the residential school system.

“At the going down of the sun and in the morning/ We will remember them.”

Tomorrow, December 6th, The National Day of Remembrance and Action on Violence against Women, I’ll light candles in memory of 14 women who were murdered in Montreal in 1989. 

“At the going down of the sun and in the morning/ We will remember them.”

Victoria, BC, 2018

I am currently reading Doug Above the Fold, John Hondrich’s memoir. Doug’s years at the Toronto Star comprised almost quarter of a century. (He and his Dad wrote & edited that paper for over half a century.) It was the most important part of his life, for much of his life, and a time when I didn’t know him at all. I was sure I’d find mention of him, his dad, and all his friends and colleagues I’ve met. When I read an anecdote and know (or think I know!) the names of those not mentioned, I am adding them in the margins. (Ha! I hope Hondrich might see the humour in my editing his prose.)

There is a link here - but I’m aware I’m asking you, dear reader, to fill in some blanks*. Memories. Witnessing. Loss. 

November sunset

*But there you go, I am setting you up for success next time you read a short story, as you’ll approach it with the understanding that the author requires you to do some of the work! 

“They shall grow not old, as we that are left grow old:

Age shall not weary them, nor the years condemn.

At the going down of the sun and in the morning

We will remember them.”

Thankful Grateful Blessed

I was pleased to see this sign in Doug’s care home again this year. Last year I posted a picture of it on Insta:

"louiseellsauthor

My husband’s care home is decorated for Thanksgiving. Many of our (one-sided) conversations this week have started with my reading this sign, debating the difference between “thankful” and “grateful” and then listing ten things I am thankful for, ten things I’m grateful for, and ten ways I’m blessed. It’s been a lovely reminder of just how rich and full my life is, and how very spoiled and lucky I am. #happythanksgiving #thankful #grateful #blessed #dementiasucks #loveforthewin"

Then, I had turned to the OED and the internet to remind myself of the difference between “thankfulness” and “gratefulness” as I tended to use both terms somewhat interchangeably. (Good thing I’m not an English teacher or literary fiction writer . . . oh, wait, oops! Ha ha.) 

One year on, I still use the terms as synonyms, but at least I’m more aware of the distinction (as I understand it).

To be thankful is to be pleased, aware of my good fortune, a feeling and a reaction which is internal. To be grateful is to show appreciation, often towards a person. Thankfulness is a feeling, whereas gratefulness is an action. 

I use the word “gratitude” to cover both, which may not be precise, but really, when I’m listing all the reasons & things I’m thankful for, grateful for, blessed to have & to be . . . precision is less important to me. 

Two reasons I am full of gratitude and know how incredibly blessed I am:

I fed Doug his dinner on Thanksgiving Monday, and went home to an empty house. I hadn’t invited myself to a dinner anywhere; Thanksgiving was going to be a non-event. (And that’s okay.) When I opened the entryway door - there, waiting for me, were pumpkin pie, whipped cream, and a jar of cranberry sauce, from Lorie. (We’d picked the berries earlier that afternoon in our local bog.)

This weekend I was unable to visit Doug.

On Sunday afternoon, when I was feeling especially tired and grumpy and old and discouraged, my phone pinged with a text. 

A wonderful photo of Doug, and a cheerful, lovely, loving message from my sister. 

I am truly thankful, extremely grateful, extraordinarily blessed. 

On Liminality

Autumn has always been Doug’s favourite season. He loved the colours, the cooler temperatures, the camaraderie of his Hunt Camp friends, and harvesting from the garden and the wild. The outbreaks (yes, plural) under control at his home, I am able to visit again, and take him outside on these glorious days. His eyes are closed most of the time, but I hope he still loves what he can feel and imagine of the colours, the temperature, his remembered weeks at camp.

Were he well we’d have gone foraging for mushrooms this weekend, and picked cranberries at the bog. Our kitchen would smell of pickles, chutneys, and jellies; fall preserved in jars to gift at Christmas. Or maybe we’d have seized the chance for a paddle on the placid lake, or tackled the garden. Were he well he’d be preparing for his hunting week with his friends, and talking already about ice fishing.

I am aware of liminality at this time of year. Waking to frost on the ground and feeling the first hint of winter in the air, but peeling off a layer of clothing mid-afternoon to embrace the late summer heat. The shifting shoreline - sandbars appearing and disappearing in a matter of days. The transition from summer to winter is slower than that of winter to summer, but equally dramatic. 

I am keenly aware of the clouds’ reflections on the lake today. Soon there will be ice and snow - beautiful in a different way. 

The sky fills with the smoky scent of the last of the summer camp fires and the first of the fall bonfires, and the sound of flocks of geese, and the sight of the trees in their autumnal colours. Muted & brilliant, ochre & orange, red & burgundy, mustard & mulberry. 

Next weekend will be Thanksgiving, and three weeks from today the third anniversary of Doug’s first day in Long Term Care. In my dissertation I argued that “care homes for the elderly are transitional areas, home yet not home, often a last place to live before death.” The transitory, liminal nature of a care home. For the “elderly.” Ha. What did I know? (Yes, Ms Munro, who did I think I was, indeed?!)  

The day before yesterday we finished the novel we were reading. The ending, although happy, caught me unawares. I blinked quickly, and steadied my voice, but nonetheless my nose dripped into my mask.

I am surprised, every time, when something catches me off guard and I cry. His handwriting inside my lunch bag; I am trying not to wash it off, but it’s fading away and will soon be gone. One of his photographs which hangs on the hall where it has always hung, some days makes me stop in wonder that we ever walked that path together and realise anew that we’ll never walk that path again. 

I think I should be getting better at endings. I am not. 

"Backward Glance & Forward Movement"

Well hello, September. The older I get, the more quickly summers seem to fly by. 

Laurie and I had supper on the deck last night in quiet remembrance of Ian. We were visited by a heron, and watched the sun set, and listened to the waves hit the shore as the wind came up. Autumn was in the air: not only the dip in temperature (our second frost warning of the month), but the great flocks of honking geese in their V formations, the bright maple leaves, some already falling, the scent of bonfires . . . 

I had a lovely summer, full of the joys of the season. Swimming in Ontario’s lakes and rivers. Weeding my garden. Reading on my deck. Sitting with Doug, eating ice cream. Walking with friends. Picking wild blueberries. Once, maybe as recently as pre-Covid, I would have referred to those as “simple joys.” This summer they were everything. 

Well hello, Summer!

And there was more! My summer was filled, unexpectedly, with live music. How had I forgotten how much I love listening to musicians and bands and singers? Sometimes inside, often outside. (And the weather cooperated for every outdoor concert and festival! Extraordinary!) Always a touch bittersweet because I am always aware that Doug is missing. The majority of my summer experiences were ones I had without him. (No, not true. Not just “the majority” - all of them.)

sunset cruise on the Chief Commanda, which Doug always loved

On Thursday August 4th, we marked our tenth anniversary. Well, I marked it, with Doug by my side. There was an outbreak at his home, but I was able to visit. We watched our wedding video on the big screen with some of the other residents. (A 92 year old gentleman commented, “Oh, you’ve always been old.” That made me laugh through my tears!) 

portrait of Doug, by Mum

This was not our plan. (Of course it wasn’t.) When we were on our Honeymoon, walking Hadrian’s Wall as a coast-to-coast, and the Speyside Way, we realised we couldn’t poke around every single historic site and visit every museum and also walk all day. We balanced as best we could, but agreed that we’d celebrate our tenth anniversary by retracing our steps with a museum day in-between each walking day. Doug joked that he’d be twice as fast a walker then, after a decade of running to keep up with my long stride. I promised I would never leave him behind.

August 4th, 2012

It feels as if I have. Left him behind. 

sunset

A new acquaintance, whose wife is living with a rare dementia, described it this way. “My role has evolved - from spouse, to caregiver, to, now, support person.” He cried as he said it. I cried as I listened. And then another of our new acquaintances asked, “And what would each of your spouses say to you now, if they could talk?” 

I believe - I truly believe - Doug would tell me to follow my bliss. To live life to the fullest. To keep going to concerts, and on road trips with Donna and Lorie. To pull on my shoes and go for a walk. To plan visits with Mum, Mo, Laura, and Karen. To make the most of the next few weeks when I can still sit on the deck and read.

I have been carrying Kim Fahner’s These Wings with me all week, reading to anyone who’ll listen. (Bless my students for allowing me to start each class with a mini meditation or grounding moment, often in the form of a poem.) 

Backward Glance & Forward Movement, by Kim Fahner