All Will Be Well

I’m strong. I’m a strong women who comes from a line of strong women. I’m capable, in many ways. But there are moments, sometimes day-long, when my strength falters, and I don’t feel capable at all. It was Doug's Birthday this week. He turned 66. ("Too young, too young, it's not fair!!" my inside voice ranted.) After a deep breath, I remind myself that all will be well. 

A friend sent me an email with this subject line: “ALL WILL BE WELL. Louise Penny said so.” She is a new friend, but she knows me well. Well enough, at any rate, to understand my love of hope, of mantras, of reframing, (as well as my love of reading, writing, scrapbooking, baking, and eating). She recommended an issue of Chatelaine in which author Penny speaks of her faith and how it helped her as her husband’s dementia progressed.

Last year a different new friend gave me a painted lantern filled with mini solar lights. It sits on my sun room coffee table, soaking up the day’s sunshine, and when I come home from visiting Doug in the evening, the tiny lights are brightly glowing, taking on the jewel tones of a hummingbird and hibiscus flower. Even Piper knows how much I like this greeting - she hasn’t ever pushed it off the table. (Everything else is fair game.) 

This is what I see when I look around just this one room of my house: two quilts and three pieces of art all made by friends, and a tea cup, a coffee cup, a stack of books, a fuzzy blanket, a plant, a comfy chair - all presents.  And everywhere, everywhere, physical reminders of Doug: the bookcases he made, notes in his handwriting, his well-used cookbooks, his shelves of non-fiction, artwork from his life before me, and artefacts from his days in various Alzheimer’s groups. 

So much of what my friends give me is intangible: the hope, the reassurance, the emphatic listening, a weekly dinner routine, a push to go for a walk, or snowshoe, or ski. It’s lovely to have these physics reminders surrounding me too. I am not alone. All will be well. 

January 4, 2022

Dearest Doug

Sometimes I fear I’m losing you - the version of you that I knew, and loved, and married, and made a life with in Bath, and Cambridge, and North Bay. I sometimes have to pause when we look at scrapbooks together of our long walks in the UK, trips to Europe, gatherings with friends, everyday moments just us. I have been told that our memory works like a photocopier machine - what we remember is not an actual event, but our most recent memory of that event. I worry that in remembering repeatedly I’m over copying, the edges are blurring, the ink is fading-  If I blink away the hint of tears, and focus hard, I can make the soft sharper, and add substance to the shadows. But it’s a stone skipping across the water, farther and farther away. An echo reaching the end of its journey round a cave. (A “deep cave paved with kitchen linoleum”* . . .) 

“Feelings are neither right, nor wrong. They just are,” a friend reassures me when I talk about the guilt I feel on days I don’t visit you, and the worry about knowing I am losing who you were, even as I love who you are. 

We had a quiet Christmas this year. 

Even without the Omicron variant of Covid we would have had a quiet Christmas. It was unclear to me if you had any sense of the day, but you loved your turkey dinner and the Bûche de Noël. I didn’t do any holiday baking this year, but Mum did, and she’s filled my freezer with all the classic treats for you. Our family and friends all sent you cards (even Harley the dog!). Your sisters sent you presents. I gave you a book (it is impossible for me not to gift books), and a child’s game with pictures of cats on cards you can hold, and super soft stuffed penguin for you to cuddle. My sister and brother-in-law visit you often, and that is the most precious gift of all. 

My sister also gently helped me admit that you are not ever again going to walk as well as you used to, and this lack of exercise means you’ve gone up a size (or two) in clothes. Replacing your wardrobe with bigger, comfier clothes wasn’t a present. Nor is the new wheelchair I’ve ordered for you. Not everything one spends money on in December is a gift. Sometimes it’s just life. 

And then, on New Year’s Eve, our Best Man wrote to tell me that his wife has been diagnosed with Alzheimer’s. I am, as you know, not great at replying to emails. But this one demanded a response - it was as much a reminder to me as (I hope) a burst of love to our friends. 

Oh D-!!

My heart breaks for you. And for S-. But it will be the worst for you. I hope she will be one of the lucky ones, and there will come a point when she is no longer suffering; you will never not suffer. 

Unasked for advice: do EVERYTHING now. Covid be dammed, make it work. Whatever is left on her and your (plural) bucket list. 

The time will disappear.

Be left with as few regrets as possible.

Whatever that looks like - travel, time with family, books to be read, wild passion, loving intimacy, sunrises and sunsets, conversations: please make the time. Lay roses at her feet while you still can. 

The time will disappear.

When you want practical advice, or need to rant at the unfairness, or wish to talk to someone with lived experience, I am here. Midnight, 3:00 am, 2:00 in the afternoon. And when it reaches the point that you need respite, I am an excellent caregiver and only 3 hours away. I will come for an afternoon once a week, or a weekend once a month.

I cannot say “you are not alone” because you will, alas, feel very alone all too often. But I am always here.

When you are ready to do some research I’ll send you a list of books, websites, services I’ve found the most useful.

Please apply for a place on the Bruyere Research Clinic in Ottawa. I would not have managed our journey without Dr Andrew Frank there.

Contact your local Alzheimer’s Society. You will need them.

It is different for every single person. I am praying that S- is one of the luckier ones and it’s a long, long, slow progression. But that won’t make it any easier, or any less sad. 

Your heart is going to break a million times. It’s so tough to handle. But never forget that you are tougher. 

No one warned me, at the beginning, how bad it would be. Maybe there’s a reason for that - maybe I couldn’t have coped with that information. If you would like a preview (it is a progressive disease; it will progress), I can be gentle but honest. If you would rather not, I will point out only the silver linings. 

I am holding you both close in my heart. 

With all my love,

Louise

And there it is, in writing. I hope I’m correct, Doug. I hope you’re no longer suffering. You have good days and bad days, but you are cheerful often enough that I hope you’re more often cheerful than sad or confused. I am so grateful that I hold so many wonderful memories of our life together. I wish I could share them with you.

With all my love,

Your wife, Louise 

*Munro (of course)

Just Being

I didn’t spend time with Doug on Saturday. I visited him Friday & Sunday; in-between I was at an annual cottage retreat with his friends, who have super generously welcomed me into their circle.

I sat in the garden in a deck chair with a gorgeous view of a quiet lake and read. I snuggled into a comfy sofa inside (with a slightly different gorgeous view) and read. I sat on the beach (again, a slightly different gorgeous view) and read. I wasn’t 100 pc anti-social; I played Kubb, swam, boated, drank (coffee! alcohol! mango juice!), ate (far more than necessary . . .), sat in the sauna, swam again, caught up on two years’ worth of news . . . 

When I came home on Sunday, stopping to visit Doug en route, I was fully relaxed. Completely recharged. The only person who was worried about my not having spent time with Doug was me. 

As much as it could hurt that he no longer has any sense of who I am, or when he last saw me, I am truly thankful that my absence causes him no stress. When I am away for a longer period of time my sister visits in my stead and he reaches for her hand, laughs with her, is just as pleased to see her as he is to see me. 

Twice this summer my Mum and I brought Doug back home. That is, to the house where he and I lived together until he moved into long term care. (“Home” to Doug is now the care home, but until quite recently, when he chanted “I want to go home I want to go home I want to go home,” he was - I think - referring to his childhood home physically located north north of Toronto, and temporally located in the late 70s, early 80s. The house his Dad sold when he, himself, moved into long term care. A house I have driven by once thinking it might bring comfort to Doug to see it; it had been renovated to such an extent it no longer resembled his house.)

Although I told Doug where we were going (even a short car ride causes him a lot of anxiety), there was no anticipation on his part. And once we returned to the care home there was no indication that he was holding on to the remembrance of his day out.

But in the moment it was clear (to me) that he was enjoying himself. The ducks on the beach, Piper on his lap, ice cream, fresh local strawberries, a home made wild blueberry muffin, a stroll through the garden pausing to look at each bright flower, the sunlight on the lake, the breeze on his face. We couldn’t come inside (he can no longer navigate stairs, or even a ramp), but that doesn’t matter - he spends hours of each day inside and the beauty of this house is its outside. 

If I ever need a reminder of what it truly means to ‘live in the moment’ I only have to watch Doug. I am so thankful that he appears to be content, and that so many of his moments appear to be filled with joy. 

H is for hope

One of Piper’s favourite places to sit is in front of the glass doors that lead from our sun room to our deck. It gives her a great view of the birds & chipmunks & squirrels at the feeder, the ducks on the shore, the pigeons and gulls and herons flying by, and, the deer that occasionally walk along the beach. Sometimes deer visit the deck, sometimes they help themselves to greens from the garden. 

We saw them the other morning, and I don’t think Piper left her spot the entire time I was at work. I’m sure she kept watch (in-between naps). They had come by once, they might come back again. 

I am not so different from my cat. Sometimes Doug makes a joke, or asks a question, or says something that sounds so like an ordinary sentence in response to the current discussion. For the rest of my visit I hang on to the hope that it wasn't a one-off. He appeared to be lucid once, that lucidly might come back again. 

I am not a mind-reader, though I’m getting better and better - I think, I hope - at deciphering clues in order to understand Doug’s non-verbal communication. I consider myself an expert at the art of the one-sided conversation. I award myself an Oscar several times a month for acting cheerful when I want to weep, strong and and capable when I feel inadequate and weak.

"I think of her every time I pull deadheads, a few when I walk by, and scatter them across the lawn.  And though I rarely visit aquariums, when I do, I find the moon jellies and watch them glide down through the water like a sky full of parachutists and think of death and regret.    

       And then I remember the hope.

       The beautiful moments of hope." (from my short story, Moon Jellies)

Apparently I have always believed in the power of hope. 

Onwards, with love. 

Happy Anniversary to Us!

 

These are the two wedding photos I chose to post on Social Media on Wednesday to celebrate our ninth wedding anniversary. 

At the moment when this one was being taken, I was reciting my vows, written using the extended metaphor of a long walk, because walking was such an important part of our courtship and relationship. 

“Doug, I chose to walk through life with you, and you alone. At times I may rush ahead - but I will always stop and wait for you. At times I may fall behind - but I will always catch up to you.  

Together we will navigate this journey. When we have to climb a seemingly endless hill, we can stop and admire the view while we catch our breath. When we get lost, we’ll use compass and map to find a route home. In times of sorrow I will comfort you, in times of joy I will celebrate with you; I will love you always.

I will point out the beauty in cold, wet weather as I do in warm sunshine, and cherish the everyday moments as well as the wondrous. At bumps in the road I will stay the course, at forks in the path let’s decide jointly which direction to follow.

I promise we will travel 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.”

Five years ago we spent our anniversary in Melton Mowbray, back in England for my summer job (teaching at Churchill College, in Cambridge).

We spent our Honeymoon walking Hadrian’s Wall and the Speyside Way. Halfway through the walk we decided we’d celebrate our tenth anniversary retracing our steps, allowing ourselves more time so that we could fully explore all the museums (and distilleries!) (and pubs!) en route. 

We  were confident our marriage wouldn’t fail (as I hope every honeymooning couple is!); it never occurred to us that in a decade’s time (less), Doug would no longer be able to walk any distance. 

Our wedding was a happy, happy day, and exactly what we had planned and wished for. A gathering of our beloved friends and family who witnessed our vows which we said in the garden of my childhood home, overlooking the Ottawa River. From Elise Joy Blaha Cripe  I borrowed a tradition which has become more precious than I could ever have imagined it would. We used cards as table numbers, and we asked the guests to write notes inside them.

My sister has kept all the cards, and sends us the corresponding one each year; this year she delivered it with flowers. This bittersweet window on the past is remarkable - a tangible reminder of the love surrounding us on our wedding day.

I recently learned that #gratitude is consider a cliché on Instagram. (Of course it is! ha ha It's probably the hashtag I use the most often.) Cliché or not, when I think back to our wedding day, and every day of our marriage since, my most overwhelming feeling is one of gratitude. 

This is the Important Thing

I am not a quick thinker. Certainly I am not great at thinking on the fly; I’m much better at more slowly organising my thoughts in writing. I write lists. I sometimes revisit conversations I’ve had in person, via a follow up text or email, in order to make sure I truly communicated what I intended to. I write reminders to myself. (On the backs on old envelopes, as my maternal grandfather did.) Perhaps it's no surprise that I called my short story collect Notes Towards Recovery. 

There are hearts everywhere, when I look for them. I found this rock in a friend's garden when I was weeding with her Mum and her eldest daughter on a gloriously perfect summer afternoon. 

After a prolonged acrimonious divorce, when I decided to bow out of the legal fight, I wrote myself a letter. It is deeply sad - difficult and painful to read. (I haven’t read it it years; just knowing it’s there is sometimes all the reminder I need.) In it, I detailed some of the most abusive incidents of my marriage, and reminded myself that I was alive - was extraordinarily lucky to have survived, both physically and mentally. By comparison, nothing else mattered. It felt as if I was starting over, with nothing, as I turned 40. (I did not have nothing. I had, and have, an amazing family and equally amazing life long friends. I am blessed indeed.) 

A scrapbook page I made in response to the prompt "risk." The journaling reads: I have scuba dived with sharks, parasailed in the Alps, survived a monsoon in India, and a category five hurricane in Cayman . . . but the most courageous risk I've ever taken was to admit failure, leave a bad marriage, move back to Canada, and start all over again at age forty. If I'd had any idea how difficult it would be, I might not have been brave enough to let go.

A much happier memo to myself is the wedding manifesto I composed before starting to plan my wedding with Doug. (I’m sure I nicked parts from other people - I’m sorry I can’t credit them. Thank you, whoever you are, for your ideas and for so generously sharing them online.)

My Wedding Manifesto

  

x

I am marrying the man I love and with whom I intend to spend the rest of my life.  

This is the important thing.

It would be lovely to celebrate our marriage with a gloriously sunny day but the weather is beyond anyone’s control.  If it rains, it rains - I will not let precipitation diminish my enjoyment of the day.

I will pause often during the day to appreciate my family and friends, the view, the music, the details, the food and to listen to Tom singing me down the aisle, Paul conducting the ceremony, the hymns, the speeches.  I will remember to capture the memories that can’t be photographed.

I will enjoy the evening as it unfolds, embracing the company of the friends & family who choose to stay on and celebrate with us, however many or few that may be.

This is an important day in my life, but so too are days and years to follow.  Doug and I are an older couple, we won’t go into debt for the reception or honeymoon.  We don’t need a theme or matching colour scheme or any extras the glossy mags and websites try to sell.  

This is a classy and sophisticated garden party.  Timeless, elegant, fun.

(My sister has full veto power over any and all of the above.)

x

  

It was a wonderful day! I have happy, happy memories. 

This is the important thing. I return to those five words when I find myself spiralling down a path of guilt, fear, sorrow, or hopelessness. What matters? What truly matters? And note that it is “the thing” - singular. Yes climate change, yes systemic racism, yes truth and reconciliation, yes homelessness, yes to all the things I need to help fix, and do better, and change about myself. But right now, this second, what is the singular most important thing, over which I have any control? 

A good friend reminds me that Doug’s basic needs are being met: he is fed, clothed, toileted, washed, cared for. I know the people who work at his care home; he is also being spoken to, listened to, loved.

When he was well, and we lived in England, we often agreed that we liked long distance walking and narrow boating in part because we were forced to slow down, and that helped us to notice a great many details we might otherwise have missed. I am finding comfort in that thought as we navigate this next stage of Covid, the all too brief summer season, Doug’s continued decline in health. 

Slow down. Take. Deep breath. Appreciate the details. A sunrise, a sunset, a heart-shaped rock, a waterlily. 

 

Holes in the World

I have a love-hate relationship wth pathetic fallacy, both in fiction and in real life. (Hmmmm . . . . I am assuming I’m not the only person who anthropomorphises literary terms?) Sometimes the technique works well - I love the building storm mirroring increasing tension in Helen Dunmore’s Talking to the Dead, and I have written a novel about a woman discovering what really matters in her life, which I’ve set against the backdrop of a category five hurricane (write what you know, write what you know . . .). Sometimes, however, it’s easy to feel that the weather is just too on the nose. 

Last week I said goodbye to two members of our Breakfast Club. On Saturday, in brilliant sunshine, Dennis was laid to rest. The Covid rules were relaxed with hours to spare, so his service could be held in a church with family and friends, then we were able to gather at his graveside for the committal service, then in a lakeside garden to break bread and share favourite memories. Six months after his death, this funeral was truly a celebration of a life well lived; the warm summer day was perfect. There was a single Monarch butterfly flitting amongst us. In a novel, it would have been too much. 

On Wednesday, in a cold, heavy rain, Jim was sent off with a full Catholic Mass. His illness was sudden, unexpected; he leaves behind his wife, who is living with Dementia. I pretended the rain was disguising my tears. 

And then, on Friday evening, Rose, another of our friends who was living with Dementia, passed over to the spirit world.

So much loss.

The week was not improved by visiting politicians I strongly dislike and do not support. One had been poorly briefed about the new care home building project he was there to announce; he pointed out the “beautiful view” the residents will have of the lake (the current home is actually right beside the lake, with an even prettier view.) He seemed oddly focussed on looks: “We’re going to build the most beautiful long term care home this town has ever seen,” he said. Well . . . thanks. How about the staff? How about the funding? How about the level of care? How about all the promises made a year ago which have not yet been fulfilled? How about making that $3/ hour pay rise for PSWs permanent? 

I know how hard working they are, the PSWs at my husband’s care home. I know what hours they put in, how often they work over time, how much they love the residents, the many, many things they do far above and beyond their job descriptions, how little support they receive from some quarters.

People are free to raise money however they choose, of course (so long as it’s not illegal). People are free to spend their money however they choose. I know this. Even so, my heart broke to read of people “spending” $1,000 for a burger and pop and the chance to hobnob with said politicians. I hope everyone who donated $1,000 to the re-election campaign also wrote a $1,000 cheque to our local food bank, or community kitchen. How many meals would $1,000 buy? How many people could be fed with $1,000 worth of groceries? (How little will $1,000 truly buy in terms of re-election TV or radio ads, glossy posters, team retreats, office supplies, whatever else the money is spent on?)

Jim was a friend I rang when I needed to rant. In turn, I was a friend he rang when he needed to cry. We also laughed a lot together, but, most of all, we were both good listeners.

“Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.”  -Edna St. Vincent Millay