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 

Reframing

My sister introduced me to reframing years ago, and it’s something I’ve been using successfully every since. It ties in well with other inside-voice chants of mine: It’s all about choices! Look for the silver lining! Onwards, with love. We regularly text each other with a fact and our re-framed take of that fact - from the super simple (I invited a friend for tea on the deck but it’s pouring rain . . . but how great for the garden, and OK, now I’m going to have to hoover the worst of the cat hair & clean the washrooms) to the more serious (Doug’s absolute lack of recognition when I visit breaks my heart . . . but I love that he’s no longer angry or sad when I leave, and I’m glad to think he’s not lonely without me when I’m not there). It’s becoming, slowly, a (good) habit - but it’s still not automatic, and it’s certainly not always easy. 

Shovelling snow in North Bay, November, 2017 (We cleared the driveway even though we didn't own a car . . . but how lucky were we to be able to move the snow, to get the fresh air & exercise, to reap all the benefits of living in a country with such glorious winter weather?!)

And then, every so often, I discover another way of looking at things which seems to make the process of reframing a titch less difficult. I was recently introduced to a wonderful blog, and the line in this post really spoke to me. “Having never been a 10 year old boy, sometimes I forget that he hasn’t been either, and all of the things he’s going through are absolutely new to him, too.”

Taking photographs in London, England, 2017

Ah! Lightbulb! Doug has never before been a person living with late stage Dementia, and I have never before been a caregiver for a husband living with late stage Dementia. All the things he’s currently going through are new to him, and new to me. We both have to adjust, but we’ll get through this. (It’s only a learning curve, not dissimilar to the learning curve I’m experiencing with my new job.)

Researching, Normandy, France, 2017

I have also recently re-read a workbook, Forget Me Not, which Doug started (but never finished) in November 2017. At the time it was so sad to watch him struggle to write (hindsight, hindsight - he could still write then!) but I’m glad he captured and saved these few words. “What comforts you when you’re upset? My wife - always.” 

“What comforts you when you’re upset? My wife - always.” I hope this is still true. 

On Not Judging

I  judge. All the time. I form instant critical (negative) opinions based on little to no evidence  . . . and I’m sure there are many more times when I’m not even aware that I’m being judgemental because I’m viewing life through my personal, deeply held belief system. (Life would be bleak indeed without books. Travel is the greatest life experience. Education is important. Wealth is only an indication of wealth.)

I have just started a new teaching job for the summer, which I am absolutely loving. I’ve changed the route I take to campus, however, so as to avoid a billboard with a photoshopped (I am assuming!) picture of a very slender woman in a tiny bikini: “Fat Attack. Summer 2021. This is MY summer.” 

Who came up with that advertising campaign? Who okayed it? Was that really the best they could do? Did they not think about the message they’re giving their viewers? 

Really?!  In 2021?!  It’s not enough that I’m doing my very best to survive a global pandemic . . . I’m also supposed to be worrying about having a beach ready bikini body? As if my body shape &/ or the number on a scale is in any way connected to my self worth. As if my body &/ or that number on the scale is not the very least interesting thing about me. As if anyone at my funeral will comment that yeah, I was a kind person, but too bad about that belly/ those extra pounds. As if thinner = happier, or thinner = better, or  . . . . This is an old rant: it makes me tired, it makes me angry, and it makes me sad. But I will keep ranting, and pushing for change, because change won’t happen with silence. 

Oops. That was only supposed to be a brief example of how much I know I judge complete strangers, and how society makes it so easy for people to judge complete strangers.

Nope. Not including a photo of that dang billboard here - the advertiser needs no more publicity. Instead, here's a tub of ice cream I recently bought myself. And ate. And enjoyed. (And yeah, technically it's not ice cream, because it's dairy-free.) 

I don’t understand anti-vaxxers, but I am trying to listen to them without instant negative judgement. I don’t understand people who support a politician I distrust and strongly dislike, but I am trying to listen to them without instant negative judgement. (So far epic fail in both cases, but I’ll keep trying.)

Piper, my cat, continues to teach me what truly unconditional love looks like. 

It’s not at all helpful when someone tells me that, “I would never do X! I could never do that!” 

Move a loved one into a long term care home. Visit every single day. Not visit every single day. Take a loved one off drugs. Put a loved one on drugs. Take a loved one home for a visit. Not take a loved one home for a visit. 

I don’t know what I’ll do until I’m faced with making the decisions I have to make, but then I do the very best I can with the information I have.  

I will try my best to support whatever decision someone else makes for her loved one - I only ask in return that that person do the same for me. Without judgement. 

Better Living Through Chemistry

I was raised by a Physicist-Mathematician and a Biologist - so it’s not entirely surprising that I believe in Science, fact-based decisions, empirical evidence. (Please, please, please don’t send me a FaceBook “article” about how adding mushrooms, coconut oil, and rosemary to a diet, or eliminating gluten, cheese, and margarine, will cure Dementia. I appreciate you thinking about Doug, but rather than forwarding those “scientific breakthroughs!!” to me, I would be happier if you performed an anonymous act of kindness. As of this moment in time, there is no cure for Dementia. Thank you.) 

I am also a fiction writer, so I strongly believe in the power of imagination. Though I don’t think, two years ago, I could have imagined Covid, or how it would change the world, or that in June 2021 both Doug and I would have received our first and second jabs and would be as fully vaccinated as possible against it.  

March, 2021

June, 2021

Post-Covid life will never be the same as pre-Covid life (she writes, stating the obvious) - but the vaccination is helping me see a way forward: yesterday my sister was able to visit Doug for the first time since March 2019. Our nephew, our nieces, my brother-in-law, and my Mum will all also be able to visit him. #family for the win

It’s been hot and sunny where I live this week; when I water my garden rainbows appear, arcing between the spray of water and the seedlings in the earth. (“If you have a garden and a library, you have everything you need.” – Marcus Tullius Cicero) 

It feels especially fitting, given that June is Pride month. Rainbows everywhere. Love everywhere. Doug and I went to the Gay Pride parade in Toronto several times; we both loved giving out ‘Mum hugs’ and ‘Dad hugs’ (yes, yes, pre-Covid, when hugs were risk-free) (and yes, yes, even though I am not a Mum and he is not a Dad). #love for the win #hope for the future

Various Miracles

I am so deeply grateful for the rapid Covid screening test, which allows me to be swabbed at Doug’s care home, confirms that I am still negative, allows me to visit him daily.

The weather has been gorgeous and I was able to take Doug outside, into the fresh air and sunshine (until the home went into Outbreak. Because . . . what . . . the Covid pandemic wasn’t enough?!).

These past weeks I have watched poplar leaves and crab apple blossoms unfurl, maple buds transform into leaves, hillsides turn from grey to blue to green, ducklings and goslings grow by the day. 

Mid-May I celebrated my birthday; in 2012 I celebrated with Doug, in Ypres, at the Cat Festival.  We rented bikes to cycle to battlefields and cemeteries, and as he was filling in the rental form he turned to ask me what the date was. ‘It’s my Birthday!’ I reminded him. It wasn’t supposed to be a trick, or a test - but, alas, it was. ‘My Birthday’ wasn’t any help to him, he had no idea what date my birthday was. 

There were other signs of his memory challenges prior to our noticing and worrying enough to go to the doctor: he forgot to come to a reading & talk I was giving with Dame Gillian Beer at Clare College, Cambridge University (one of the highlights of my time as a Phd student), then was worried and angry when I got home as he’d had no idea where I was. He was late for many meetings. He grew increasingly confused about where we lived, and which fork in the path to take on a same-every-single-day route.

I would like to forgive myself for the times I was irritated that he was (apparently) so scatty and disorganised, or the evenings I arrived home from work and found breakfast dishes still stacked by the sink, or the days when he appeared to have accomplished absolutely nothing, or the first time he wasn’t able to navigate with map and compass.  Also, I would like him to be able to forgive me for the times I argued that he needed to shave, and worried at his seemingly obsession with packing and re-packing, and wished out loud for a cup of tea he was no longer able to prepare. 

There is so much I wish I’d known when we started; there is so much I have learned. 

Name tags work.  (Even after he was no longer able to read my name, staff and some residents at his care home didn’t have to wonder who I was.)

Poetry works. (For us, poetry he knew and loved when he was well, some of which he continued to recognise, at least in part, for a long time. Rhyme works. Shakespeare works.)

Music works. 

Love works. I can’t love him well again, but I can love seeing the sunshine on his face, love knowing that he is well cared for, love holding his hand, love the sound - still, occasionally - of his laughter. 

I am deeply grateful for fiction, which both transports me and grounds me, and for my friends, who do the same. Miracles indeed. 

(The title of this blog post is that of a Carol Shields story.)

Past Imperfect

I miss my husband. I miss our conversations, and all the things we did together: our walks, our adventures, our shared loves, the things we discovered together. I miss reading & discussing books, watching & talking about plays, cooking together, taking random courses together in order to learn how to make cheese, build a pizza oven, or more effectively use a compass. I even miss our differences. I just miss him, and us. 

The end of the Pathfinder walk, a 46 miles-in-a-day-walk (50 by the time we walked to and from our B & B). Exhausted, but smiling, and ready for a pint. 

Just to be clear, my husband is still alive. 

And he’s still my husband. And I speak of him in the present tense: Doug loves pie. Doug loves music. Doug has a great sense of humour.

The end of our Hadrian's Wall Walk, which we added to in order to make it a true coast-to-coast. 

It breaks my heart when people refer to him in the past, though I understand why they do. He is not the person we used to know. And past imperfect is the correct choice, alas, for many of his loves and hobbies. He used to play the banjo and bagpipes. He used to be a voracious reader. He used to be a talented writer and editor, and he used to have a beautiful singing voice. He used to bake all our bread, and make jam, and preserve pickles, and . . . and I’ll stop before I just list all the things he is no longer able to do, because that will only lead to sadness.

The transition I made from wife to wife-caregiver was difficult for both of us, and the transition from wife-caregiver to caregiver even more so. This new transition I’m making (slowly, reluctantly, as if I have any voice in the matter at all) from caregiver to stranger is difficult only for me; he is unaware. That gives me some comfort. 

He sometimes looks at me, smiles, and says “hello!” as if he’s pleased to see me. Just as often he looks at one of his professional caregivers, or a housekeeper, or another resident, smiles, and says “hello!” in the same way. I’m truly glad he’s so pleased to see so many people. We’re both introverts, but he used to be the social one - great at telling jokes, and making small talk, and listening, and mixing drinks, and hosting gatherings. We used to be a great team. 

I am super lucky - truly blessed - to have friends I can ring in tears. After a recent incident at the long term care home, I called a best friend who listened to me, comforted me, and then reflected that Doug is not the man I once knew. Sometimes I need to be reminded that his reality and mine are different. And that it is OK for me to grieve the loss of the man I used to know. 

I used to love him;  I love him still.

“Hope is the thing with feathers . . .”

I have many super powers: finding silver linings, re-framing, focussing on the positive . . . But there are days when hope is more elusive. Days when Covid numbers are climbing and harsher measures must be enacted, days when the top stories are all bad news, days when I learn a dear friend who has been living with a sore back for months is, in fact, living with incurable bone cancer, days when Doug is grumpy or sad . . . days when I am grumpy or sad. 

There are books. (There are always books.) And there is chocolate or pasta or pink grapefruit or blue cheese or whatever my favourite food of that second happens to be. There is poetry. There is music. There is nature. There is walking.

And always, always there are friends, and my sister and my Mum, and Piper-the-Cat.  

And there are words, when I am able to find them. 

Doug was never a competitive Scrabble player; his vocabulary is (used to be) extensive and he delighted in playing the most interposing words, not those with the highest score.  

We played against each other, and then, as his words disappeared he and I played as a team, against my sister and her youngest daughter. At that time my niece could spell “cat” and “joy” - in one of those games Doug played “loyalty” and then “talisman.” My sister and I ignored our teammates’ occasional misspellings, and awarded points for effort and enjoyment.  I watched over the months as my niece’s spelling improved, and Doug’s worsened.

When he first moved into his care home, Mum and I played Scrabble, with Doug drawing tiles from the bag, sometimes managing to count the correct number, sometimes not. No one cared. And then Covid: so it’s been over a year since my Mum has visited her son-in-law, my sister her brother-in-law, my youngest niece her favourite Uncle. 

I still take our bag of tiles to his care home. Years of use have worn the wooden corners, and they are lovely and smooth. I spell out DOUG and LOVE and make sure he doesn’t put the tiles into his mouth. So there are always words - even when I struggle to find them. 

This week I am holding Melodie & Donna & Lorie especially close in my heart. 

Onwards, with love. 

“Hope” is the thing with feathers

-Emily Dickinson

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.