A is for Asking, and also for Accepting

I don’t have a clue. How do I do this? How do I keep doing this? Caregiving through Covid: the challenges of 2020 have presented a steep learning curve, and some days it feels like we’re all just making it up as we go along.

A friend & mentor noted that “. . . your blog is titled "A Long, Lonely Journey," and yet so much you write about is of the connections that sustain you.” Connection: the miracle that saves me, every time I’m on the edge. 

(Sanctuary Door, Durham Cathedral)

Help.

It’s been a struggle for me to ask for help. Sometimes I’m not quite sure what help I need; often it’s just difficult to ask. (And of course I know that no one can give me what I really want - Doug to be well again.)

(2013: a pint in a pub after a 17 mile walk - tired but as cheerful as ever)

Some of the most thoughtful, most useful help has been given to me without my asking. For over a year my sister organised her work week so that she could spend every Wednesday morning with Doug. She arrived at the door, gave me a hug, and took him to her home for breakfast, an outing or activity, and lunch, giving me a block of time to mark students’ essays, write tests, shower, grocery shop, read, sleep.  She texted me photos during the morning showing my safe, happy husband.

The day I was told my husband had been allocated a bed in long term care, my best friend left her family’s dinner half-made, one daughter at a skating rink, another at a swimming lesson, rang her husband and mother-in-law with instructions, got in her car, and drove four hours to be with me as I went through the process. 

My Mum, a photographer, has made a series of note cards with pictures of Piper, and sends Doug a letter every single week. The day it arrives a staff member reads it to him, then sticks it to his wall; when I visit I’m able re-read him a selection of her letters. She’s also made a book featuring her pictures of Doug. Together, we have all been walking in Norfolk, canoeing in the Ottawa Valley, narrow boating in Yorkshire, swimming in Mexico, celebrating our wedding, my graduations, hanging out in a pub, at a picnic, on the deck. There are very few words in the book, but every page says to me: “I see you Doug. I see you. I know who are you, what you like, how you think. I see you and I love you.” 

(2020: photo book by my Mum)

(2017: selfie from a winter walk)

On Admitting I Was Wrong

 

(photo: Piper & Kitty)

The first time I started attending an educational series about Dementia, I quit. There was too much information, too soon, for me to cope with. I spent the first evening in tears (heavy, snotty, loud, unstoppable tears), and the second evening trying so desperately hard NOT to cry that I couldn’t focus on what was being said. I didn’t go back to the third session until two years later.

The moment I remember as most heartbreaking was a discussion about doll therapy as meaningful work for people living with dementia. I disagreed through my tears. ‘In my opinion, that is not meaningful work.’

‘Well, not work, exactly,’ conceded the facilitator.  

‘Nor meaningful,’ I argued. I probably fought to shut out an all too clear image of my husband holding a doll in his arms, cooing to it, singing, comforting a lifeless piece of plastic.  Even if it made him feel better, useful, less lonely? I asked myself. Well . . . Surely there had to be more value to a life - his life - than that. 

I was wrong. Completely, utterly wrong. Then, I was still trying to pull Doug back into my reality. It took me some time to understand that it’s my job, as his caregiver, to enter his reality. And it was our niece who reminded me how easy that can be. 

Of all his roles in life, I think my husband has enjoyed being “Uncle Doug” more than any other.  He has loved spending time with his nephew and nieces, and his are often the first presents opened “because you know it’ll be the best!” One summer day our youngest niece came to play. The deck was a pirate ship, the beach was a beauty salon, the lawn was a gymnastics studio, the lake was a mermaid cove filled with dolphins, manatees, and narwhals. It took me no effort at all embrace this imaginary world . . . 

OK, of course it’s not that simple. But with time, and patience, and practice, I learned how to slip away from what I consider to be real, and join Doug in the place he’s inhabiting. I can talk with people he sees (and I don’t), can “remember” a recent dinner with his (late) parents. I can carry on a one-sided conversation. 

I have never questioned my niece's love for the Douglas stuffed animals her Uncle gave her. Why did I ever think love for an inanimate object had to end with childhood? Last year I bought my husband this cat. She is loved (but survives when ignored), meows, purrs, stretches. She provides a good conversation starter, is a good listener, can be petted and carried (but also dropped). (Bonus: she doesn't need feeding, and doesn't have a litter box requiring daily attention.)

(photo: contents of box may not be exactly as depicted!)

I try to do the best I can, with the information and resources I have.  I’m often wrong; I am thankful for so many second chances.

(photo: scrapbook page - Doug & Kitty.) 

Three Things

 

(photo: a recent sunrise above my neighbours' rooftops)

I can’t remember when my sister, my Mum, and I started this (other than ‘since email’), or where the idea originated.  It’s super simple, and, for me, surprisingly effective. One of us sends an email or text, and lists three things we are grateful for in the immediate moment. They can be seemingly small (there is a gorgeous blue jay at the bird feeder) or enormous (I can afford to pay my mortgage and my heating bills and buy groceries, so I am living in a warm house with food in the fridge). Often, but not always, the other two of us will respond with our own lists.

(photo: Piper is an expert at living in the moment - here, finding joy in a sunbeam)

On days when it’s easy to count far more than three blessings, this is a reminder of our great good fortune. On days when we’re struggling . . . this is a reminder of our great good fortune. I do have a few cheaty ones. In the post-hurricane days I learned that I really like having clean knickers to wear each morning (something I had taken for granted my entire life), as well as reading lights at the flick of a switch, and fresh drinking water at the turn of a tap.  (Please bear in mind that I live in a so-called ‘first world country’ yet too many people do NOT have access to fresh water at the turn of a tap.) I will never not be grateful for all the health care I'm able to access for Doug, and for all the help I've had dealing with his Dementia.

(screen shot: I recently reviewed a novel, and the author tweeted her thanks)

One day this week I noted that it’s been a year since Doug moved in to long term care, and that we have both survived the transition. For the first several months, he thrived, because he was given greater stimulation and had far more company than I had been able to provide at home. With the progression of the disease, and the arrival of Covid, he may have wobbled a bit. But now, again, he is thriving.  In a province where so many seniors are truly suffering, he is safe. He’s very well cared for, he’s loved, he’s as content as possible.  One day when I was visiting this week a Blue Rodeo dance party broke out in the dining room; we held hands, and we danced. 

(photo: an Elvis dance party this summer)

It won’t work for everyone, but it works for me; in my darkest moments when I pause, and take a deep breath, I can remind myself of all that is good. 

(photo: a recent sunset) 

Random Bits of Paper

 

 (photo: fridge door, October 16, 2020)

The church across the street is running ‘Operation Warmth’ this winter - collecting gently used winter clothing. It’s the sign, the nudge, I needed to start sorting my husband’s closet, and passing on the clothes he no longer wears, like shirts with buttons, and trousers with zippers.  Before I run everything through the wash I check all the pockets, finding change, a battery, a roll of washi tape, and other assorted things he picked up at some point. A multitude of pens. Scrunched up scraps of paper. 

I unfold each scrap of paper before I throw it in the recycle bin, just in case I find a note.  Because even in our era of emails and texts, Doug wrote me notes. I haven't found one in his winter clothing yet, but I might, and I’ll savour it and save it. 

I’ve always saved bits of paper. Some friends roll their eyes and send me links to websites about de-cluttering. Mum jokes that it’s genetic - my using the backs of envelopes for list writing, and postcards as bookmarks - inherited from both her father and her maternal grandfather. Maybe I was drawn to scrapbooking because it involves collecting pretty paper, and justifies my saving concert tickets, tourist maps, and boarding passes. (Remember those things? Paper boarding passes, concerts, tourists . . .? From a bygone time . . .)

(photo: scrapbook page from a trip to India, 2006)

Doug and I celebrated our marriage by walking Hadrian’s Wall (as a coast-to-coast path) and the Speyside Way (distillery-to-distillery!) Fun fact: we found some bills, train tickets, and letters my great grandfather had saved (using them as bookmarks in his guidebook) from his exploration of Hadrian’s Wall in 1938, so we were able to retrace his steps.  We visited the same pubs he’d visited, and it became a running joke - translating old money into new and calculating the different in cost of a pint then and now. We also imagined and laughed about the differences and similarities in the food and the decor. So much joy from a handful of random bits of paper. 

(photo: scrapbook page from our Honeymoon, 2012)

Genetic predisposition or clutter . . . .  What matters to me is that I still find handwritten love notes from Doug tucked into books, and jacket pockets, and his desk drawers. I keep them on the fridge door, so that every single day I read his words. These tiny mementos of his love have become more precious to me than he ever could have imagined when he wrote them. 

“Three Years Ago This Week”

(photograph: Harpers Ferry, autumn 2017)

I make photobooks with a service which occasionally sends me bittersweet email reminders of past albums. Today’s was from our tour of American Civil War battlefields. Can that really have been only three years ago? Doug was so well! He could still use a camera. He could shower, shave, and dress himself. When we sat with other couples at dinner I adopted a Bossy Wife persona and hoped people would assume he was quiet, rather than hear his struggles to converse. He had a few seizure-like episodes, but always in the mornings, before we met the rest of our group. He slept through movies and bus rides, but was alert when we reached each site.  

The majority of his book collection is non-fiction, with several shelves devoted to the American Civil War. He held on to that vast store of knowledge, and three years ago he could still access it. He’d previously visited some of the battlefields with his late Dad, and had happy memories of that holiday.  (So much so that one day we bought his Dad a souvenir. By then I had realised that it is kinder to pretend his parents are still alive than to keep retelling him the sad news of their deaths.)

This was the first time we booked an organised group tour, and I was hesitant. (It was not inexpensive.) I have no regrets, I’m so pleased we went. With hindsight, we had less time left to travel together than I had hoped. 

What I do regret are trips we didn’t take together, plays we didn’t see, things we didn’t do . . . things I didn’t do. I’m sorry I didn’t learn how to play Chess, I’m sad that we didn’t go out dancing together more often, I wish I’d resigned from my job sooner than I did. 

When I feel sorrow at something we left undone, I try to remind myself of all that we did do.  We never went to Dieppe, which was high on his bucket list, but we did go to Ypres, and the D-Day landing beaches. We walked many, many miles across England together. We rented a narrowboat with my Mum and step-Dad for a week. We vacationed in Mexico with my Mum, sister, nieces, and nephew.  We visited Scotland numerous times, including a Burns Night celebration in Burns’ birthplace. We packed picnics and went for day trips. We were regulars at our local pub’s weekly quiz night.  (And, I remind myself, through the first years of our marriage we were both working and I was earning a PhD; we made the most of our limited time and budget.) In Canada we’ve explored corners of Algonquin Park, walked all our local hiking trails, and travelled from Vancouver to Toronto by train. In our homes we baked, we played Scrabble, we listened to music, we spent hours silently sitting next to each other reading (history for Doug, fiction for me).

We made friends, we built a life - a good life - together, we have a language-for-just-us and code words and in-jokes. 

It’s a balancing act, but just thinking about all the cheerful memories I could list here shows me that my happy memories far outweigh my sad memories.  For me, this counts as a win.   

(photograph: Antietam, autumn 2017)

The Night The Cat Exploded

 

(photo: 29th September, 2020 - proof that Piper is alive and well, albeit exhausted after an afternoon spent lying in a sunbeam, watching ducks & birds & chipmunks!)

I wasn’t sure what had woken me, but I was groggily awake, for about the sixth time that night. My husband was asleep beside me in bed, but there were a lot of lights on downstairs, which was odd.

Maybe I’d left them on - the last email I’d read the previous evening had stung. Someone who had known my husband long before I’d met him, but hadn’t seen him for almost two years, had written, “You were complaining so much I thought he was really sick. It’s good to know he’s fine.”  He was not “fine” and I didn’t think I’d been complaining, least of all to that person. A recent phone chat between them had lasted all of three minutes, with my husband doing all of the listening, none of the talking. 

But, as is so often the case, the negative voice drowned out all others. Was I overreacting? Imagining? Was he healthier than I thought? Was I complaining a lot? Was my concern making things worse? What if- What if-

I didn’t notice the smell until I got downstairs. In the corner of the brightly lit kitchen was a mound of  . . . My first thought was that the cat had exploded.  

It only took seconds to realise the cat was fine, and meowing loudly as if to tell me something had to be done.  

Something did have to be done. My husband had found the light switches, but he’d not only missed the toilet, he’d missed the washroom. Both of them. The one right beside our bedroom, and the one downstairs.

Fully awake, I looked back. He’d walked through the mess he’d left, tracking it across the kitchen floor, and up the carpeted stairs. There were handprints on the walls, and bannister, and . . . how could there be such a big pile on the floor, when so much had been spread round the house? 

I considered taking a photograph of the excrement to text to the person who was convinced that I was exaggerating our struggles. Instead I cleaned the kitchen floor, and the hallway, and tackled the stairs, and then woke my husband to clean and change him. I put fresh sheets on the bed, I bleached the walls and counters in the kitchen, and I started a load of laundry. My husband and the cat curled up and both went back to sleep. I had another go at scrubbing the carpet on the stairs. By then the sun was rising, so I made myself a coffee.  

What if he’d gone outside instead of coming back upstairs? What if I’d slept through? What if- What if-

I scrolled through an online support group, not even sure if I had a question to ask.  ‘I’m writing an article about caregiving,’ one member had posted. ‘Title ideas, please?’ You Will Need Patience, someone had offered. Yes, I thought, thumbs up. There Will Be Imaginary Friends, another person wrote. Yup, I thought, also thumbs up. There Will Be Sh*t, suggested a third person. I gave that one a heart, then Skyped a friend in England because it was already mid-morning there.

‘Hey,’ she said. ‘Good news?’

‘Good news. The cat has not exploded,’ I answered, and told her about the previous hour of my life.  

‘Oh crap,’ she said. ‘Whoops, no pun intended.’

‘Huh. Maybe I’ll laugh about this one day.’

‘Laugh about it now, Lou,’ she suggested. ‘I'm laughing! Laugh with me. And know that every text I send you this week is going to include a poop emoji.’  

I didn’t manage to laugh about all the accidents and all the laundry, every time. But I had a lock installed on the front door, so that if I ever slept through his waking again, I knew he wouldn’t be in danger of leaving the house. And I do know there are far worse things in life than cleaning up a mess. And I am thankful, weird as it is, the original poop emoji with steam and flies has been replaced with a much cuter version. 

 💩 💩 💩

Love/ verb/ to Hold Dear, to Admire, to Greatly Cherish

 

First thing this morning Laurie and I swam out to the little island and back, then sat in the sun with a pot of tea, and wild blueberry muffins, and poetry.

Just part of my day, but important to me for many reasons.  

It was dark when I rose; it would have been easy to stay warm in bed instead of making muffins. But baking is one of the ways I (try to) show love, and today, especially, I wanted to remind myself (and the universe) that “love” is a verb as well as a noun. 

I have always been extraordinarily lucky. I am shy but have managed to surround myself with the most extraordinarily wonderful friends for my entire life. My four best friends childhood friends are still my four best friends (and our childhood was many years ago!) - but that’s a story for another day. This friend, Laurie, is a new friend, and to make a friend in middle-age is such a great joy.

We first met at the University of Ottawa at the Alice Munro Symposium held in 2014. I mentioned my connection to her northeastern Ontario city, but it took all my bravery to network with her as an academic. A few years later, I moved back to Canada, to that same city, and our paths crossed at a monthly evening poetry reading series. She contacted me to ask if I’d be interested in a volunteer position with the series, but by that time my husband had started sundowning, and I wasn’t able to accept her offer. We began a semi-regular email correspondence. She put my name forward for a job at the university, where she is a professor.

Then, suddenly and unexpectedly, her husband died.  

When she invited me to lunch some months later, she said she wanted her world to expand, not contract. We had lunch, several times. We walked her dog, often. We talked about books we’d read. We started attending a course about living with grief. And then Covid arrived, and all our travel plans changed, and somehow, magically, we created a new-to-us morning routine. Some days I go to her end of town, and we walk her dog through the woods, frequently seeing deer en route. We’ve watched the summer come and go through wildflowers. Other days she comes to my end of town and the three of us swim to the little island, then sit on my deck with tea and muffins (well, her dog isn’t offered tea or food). In the woods, the lake, and on my deck, it has been easy to stay six feet apart, keeping each other, and each other’s loved ones, and ourselves, and complete strangers, safe.  

Today marked the first anniversary of her husband’s death. Laurie chose to start the day with “our” swim, which is the only reason I endured the cold water. After we swam I read one of her poems, and one of her husband’s poems. We watched the light on the water, and a small group of mergansers feeding in the shallows, and listened to a pair of seagulls calling to each other off in the distance. 

grace by Laurie Kruk McCulloch

Epilogue by Ian McCulloch