Light

Dearest Doug,

You are so missed in church. Donna and I always remember you and Dennis sitting in our pew, whistling, singing with words real or imagined, tapping your feet. 

This blog has changed since I started - and isn't that the beauty of blogging? These are the words I wrote for and spoke in church recently. I am never not missing your physical presence in my daily life. 

Rev Dennis Landry

April 10th

It is always such an honour to be asked to lead these prayers. Sometimes I call them prayers for the people, and sometimes I call them prayers of the people. I think they are both - of and for - and I think that’s one of the many strengths of the St. Andrews Church community.

Let us pray together:

Oh Mystery that we call God, we give thanks for this community, and that we are able to gather together both in person and through the magic of technology.

In this part of the world, at this time of year, there is such a dramatic change in the way light fills our days. As winter ends, and we transition through spring towards summer, we are reminded of cycles - days, seasons, lives.

Patient God, help us sit with the early morning mist which hides a sunrise, or the slow reveal of a morning sky through thick cloud cover. Help us do more than look for the sun, but also smell the new growth and listen for the songs of returning birds. 

Help us, please, to trust what we can’t always see, to remember that you move in mysterious ways, to hold tight to the faith we have in you and your plan for us. Help us start our days with determination and confidence to do our very best, and then help us to have the difficult conversations, make the seemingly impossible choices, do the hard work.

Loving God, help us pause during the busy morning routine to look outside as the sun rises above the horizon and bathes our view with the radiant glow of the magic hour. Help us remember to pause through the day and face what it is we might otherwise turn away from. And remind us too that we can see things from a very different perspective than others, but we need only pay attention in order to find the thread that will bind us together. Help us listen. Help us love.

Generous God, ground us, please, in the moment. The sunlight catches diamonds in the last of the snow, and also frames reflections in the first edges of open water. These are the days of late winter - almost summer - early spring - back to winter. The overcast day is as precious as the postcard perfect blue sky day. Let us close our eyes and hear the rain, stick out our tongues like children to taste it, jump in puddles along the sidewalk. 

Without losing sight of the moment we are in, help us too, anticipate what may come next. When the rain passes there might be a rainbow, there will be flowers. God, gardens of sunflowers will hold deeper meaning for me this summer than every before; thank you for such a simple yet profound, constant constant constant reminder of Ukraine, and of the work we must do to end that war. 

Gracious God, as our days begin to close and the sun starts to set, take us back outside to experience the hazy light of the evening magic hour, when we still feel the warmth of the day’s sun on our face. Fill us with optimism and with hope.

Merciful God, please hear the names we are saying now, both aloud and silently in our hearts, and know we are asking for your help in giving our light and yours, our love and yours, our hope and faith and healing healing and yours, to these loved ones. 

Karin, Tim, Monique, Joyce, Doug  (*silence)

Beloved God, we know that “hate cannot drive out hate, only love can do that. Darkness cannot drive out darkness; only light can do that” (MLK). Help us all to be that light, reflecting your light into our world.

These are our prayers.  Amen

And p.s. Mum reminded me that Paul, the apostle, taught us “Faith is the evidence of things not seen” and so with patience we may discern your path for us.

The Call

Random fun fact: I used to think I could be a romance novelist. In 1999 I was a Finalist in the Romance Writers of America’s Golden Heart contest which seemed like a big deal at the time. That novel, and the others I wrote, were never published. (Never mind, they were great practice for everything I’ve written since.) When I went to conventions, there was always at least one panel or workshop about what to do when you received The Call (an offer from a publisher, delivered by phone). It never came, but I kept the list of recommended questions by the phone for years, just in case.

That's me! (Bottom left hand corner. In 1999, when I was blonde.)

When our Care Coordinator put Doug on the Crisis List for a bed in a care home, I understood that it could be months before a suitable bed would become free. In fact, it was only weeks before  we got that Call.

It was a big shock. I hadn’t expected it to happen so soon, or for the decision to be so difficult. That’s when I ought to have had a list of questions waiting beside the phone. What I knew was that my options were to accept that bed, or to decline the offer, at which point his name would be removed from all wait lists and we would have to wait three months before we could reapply, at which point he’d go back to the bottom.  

The person I most needed to talk to - Doug - was of, course, unavailable for the discussion. 

It would have been easy to ring my best friends, but I knew they would tell me to put on my own oxygen mask first, to allow myself the chance to have a full night of sleep, to let professionals help with the heaving lifting, that I wasn’t earning earning points for endurance, that no one would judge me-

Instead I sent an email to four of Doug’s closest friends, trusting his long-term friends would put his needs first. “I’m not even sure what I’m asking you. What should I do? Is it too soon?” They all wrote back to say, as gently and lovingly as possible, “Now is the time. Take the bed.”

I also emailed Doug’s neurologist in Ottawa, who replied: Louise: This is a heartbreaking situation, as you know.  In my experience, long-term care is recommended if someone needs assistance with all daily activities, including bathing and toileting. Long-term care is recommended if someone is too difficult to lift up at home. Individuals can remain at home with additional private homecare services, which are expensive, and may or may not be available in your area. The decision must come from your heart, as only you can know if care at home is adequate and sustainable at this time.

So I did what I do when faced with decisions, found a used envelope and wrote out a list of pros and cons. 

Then I rang my sister, and my Mum, and my best friends, and Doug’s family.

Then I cancelled that morning’s respite care, and we went to the Farmers’ Market. We bought butter tarts, and sat on the grass in the late autumn sun to eat them, then walked along the waterfront admiring the fall flora and foliage. 

There was a third option: I managed to negotiate an extra two weeks with Doug at home, and a care home only a third of the distance away. This allowed us to spend Thanksgiving at home together. 

And with hindsight, we are ever so lucky to have made that choice. He was ready for long term care, with professionals to care for him, and so many new people with whom to socialise. Had I declined that offer, he’d have been at the bottom of the wait lists when Covid struck - and the following year would have been very different for both of us. 

Time

Doug is now officially in ‘Late Stage’ Dementia using the labelling system that divides dementia into Early, Middle, and Late stages. Other systems have five numerical categories, others seven. On every chart I’ve looked at, in books and online, there is little difference towards the end. 

2013: Bricked off door, abandoned church

Four years ago I thought this would be the worst news and I dreaded the day I’d be told. But when the care home doctor confirmed it last week as we discussed reducing some of Doug’s medications, it was just news. Not good news, but not the worst. Just a fact. It’s a label, with all the benefits and disadvantages that come with so many labels. 

2022: when testing oneself for Covid isn't the least bit unusual 

The medications we’ve decided to decrease with a view of stopping altogether are intended to slow memory loss. Did they work? Impossible for me to know. There was no control group for comparison, and the challenges of Covid added to my difficulty in judging (guessing) how effective they were. I’m not sorry we tried them; I’d make the same choice again just in case they did give him - and us - a little more time with a slightly better memory. 

Time. Time is what I most long for. Time denied the Ukrainian mother-to-be and her child who were killed in the bombing of their maternity hospital. Time is also what I most celebrate. Individual moments of clarity are all the more precious when they emerge from a fog. 

2015: Walking the Weaver's Way, Norfolk

Two of Doug’s fellow residents passed away last week: both were 100 years old. Long lives, and, from the little I saw and learned, good lives until the last few years. They both sometimes sat with Doug in the dining room. The gentlewoman always asked for “more salt! more salt!” and if I tried to get away with pretending to shake some on her meal she called me on it. If I live to be 100 I hope I'm still that sharp! When she wanted to get someone’s attention she’d clatter her false teeth; it was the most annoying sound and I’m sure she knew it, and did it deliberately. Ha! The gentleman was a local hero, and leaves behind many improvements to our community. I am grateful for the short time I knew them both. 

Time. Time in a care home seems as fluid as time in one of Munro’s short stories. It slows and loops and speeds and reverses . . . and it feels exaggerated in such a liminal setting. There are two people who actively enjoy watching the news on TV, but if neither of them is there, and everyone else agrees, I turn the channel to the home and garden network, where people renovate an entire house in half an hour or build one from scratch in a sped-up 100 days, or to the game show channel where men and women from the 1970s make risqué jokes of that era. 

2022: last week

This is the week, if weather predictions come true, that winter will magically turn to spring. Temperatures will jump above zero, and precipitation will change from snow to rain. This is the time of year when I feel the most hope.  

“What is it you plan to do with your one wild and precious life?” asks Mary Oliver. I’m optimistic that there is still time for me to answer well, to make a real difference. 

Everything

Dearest Doug,

You were fast asleep today for the entire duration of my visit. I held your hands - I love holding your hands; I love your hands in mine. Usually I can, and do, rouse you. I’m growing used to your eyes being closed when you’re awake, but today you were fast asleep. I chatted to you - I hope my voice brought you some comfort, on some level. 

I would have liked to talk to you about the war, practiced the correct pronunciation of Kyiv, discussed the Vigil that is being held in town this evening. I would have liked to have talked about Covid for the past two years as it arrived, unfolded, changed our way of life. I know people have been glued to television sets; I know you would have been devouring the Toronto Star and the Guardian. You would have contributed some Op-Ed columns, I’m sure. Thoughtful, concise, well-researched, beautifully written. 

Instead I told you how well my lecture at the uni went, how bright the students are, how close a reading they’d given the work, and how much hope for the future I feel having met those young people. I tossed around a few ideas for papers I could write. Should write? (Only a few years ago you would have gently chided me: “those papers won’t write themselves, get on it!”)  I read to you  from one of our scrapbooks, describing the photos and the memories they hold for me, making sure I didn’t ask “Remember when we . . .? Remember when?”

Mum did all the Christmas baking this year; I had the last almond square for you - but even that didn’t pull you from the sleep you so obviously needed. (Confession: when I came home I had a cup of tea and ate the almond square.)  Holding the square in front of you, trying to tempt you awake with the scent of almonds, I talked about the marzipan figurines we saw in shop windows of patisseries in Europe. And that Easter is late this year, but Mum and Donna made the Simnel cakes in Deep River when we visited for Family Day weekend.

I still think of Family Day as a “new” holiday as it wasn’t invented when I was a child/ teenager living in Canada. But it was first celebrated in 2008, so it’s older than us, as a couple. Donna, Lorie & I spent the weekend with Mum & Tom in Deep River; snowshoeing, playing Scrabble & Scattegories, reading, baking, cooking, eating. Exactly the sort of weekend you’d love. I thought of you - and how you’d enjoy the moment we were in - many, many times.

We’ve never walked through an almond tree grove together and smelled almond blossoms, or picked nuts from the tree. We’ve stood over a pot of hot water though, to blanch almonds and squirt them from their skins. We’ve deep fried elderberry blossoms and we’ve made elderberry jam, and we’ve picked blackberries and blueberries and forged for mushrooms and wild garlic. 

You don’t need to open your eyes, Doug. I can use my words to describe the things we’ve seen, and smelled, and tasted. And the cuckoos we listened for in the English springtime, and the sting of nettles we picked for soup. My voice may be a little muffled by the mask, but this is me speaking. My skin is winter-dry, but this is my hand holding yours. Right now, this is everything. And more than enough. 

Six Years Ago

Doug has always been a cat person; he re-homed his cat, Milo, when he moved to the UK with me. At the time I had no idea how great a sacrifice that was. I’d grown up with both cats and dogs, but always thought of myself as a dog person. (Wrong! Apparently I’m an animal person.) I have made a lot of poor decisions in my life, and regret things both done and undone. But wen we moved back to Canada, I suggested to Doug that we adopt a cat. Such a good decision!

Piper's first day in her new home

We went to our local humane society, where there were six super cute, energetic kittens, and a significantly older cat. I expected Doug to choose a kitten but he immediately pointed to the bigger, older cat. ‘Middle aged women need to be loved too,’ he said. In that moment I fell in love with him all over again. Later he admitted that he was worried Piper would be euthanised if she wasn’t adopted. When we signed the papers, one of the workers gave another a thumbs up and told us, ‘She’ll do so much better by herself.’ (True. She doesn’t not get along well with other cats, dogs, or spiders.)

We didn’t own a car, so brought her back in a taxi. After a half hour exploration of her new home, she nodded her head as if in approval, and curled up for a nap on our bed.

Doug's last night at home - Piper didn't leave his side

She kept us awake for most of that first night while she discovered places to play hide and seek (inside the box spring! behind a row of books on the top shelf!), and took great care to remind us that cats are crepuscular animals - waiting until we’d finally fallen asleep before waking us up by licking our faces and asking for breakfast.

It's not really a challenge to do a jigsaw unless you have a cat . . . 

She was absolutely Doug’s cat for the rest of his time at home. She followed him around like a puppy dog, and waited by the door for his return when he was out. I hope they kept each other company when I was at work; I know she still misses him.

She wakes me at dawn most mornings. I continue to buy her toys - even though boxes, paper bags, and hair elastics remain her firm favourites. She takes up an incredible amount of space in the bed, and often feels the need to sleep on top of me. 

And I wouldn’t change a thing. She knows when I’m sad and in need of comfort; she licks away my tears when I cry; she holds her paw in my hand. She grooms me daily.

We had hoped for children, biological or adopted, but the universe had other plans. I suspect, truly, Piper chose us and let us pretend we were choosing her. I am not for a second suggesting that a cat replaces a child, but she came into our lives when we most needed her, and we have loved her ever since. 

So much change in those six years, but through it all this unconditional love. 

#love for the win!

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)