The (First) Worst Day (How I Learned About Exit-Seeking Behaviour)

In September 2018 I attended a day-long writing conference in Toronto. The timing was perfect - it was two days before our flight to British Columbia for our cross-Canada train trip. 

The morning was uneventful; I took Doug out to breakfast, then left him in our hotel room watching an old movie he had previously enjoyed. I registered for the conference just in time for the first workshop, and was able to pop back between workshops and panels to make sure Doug was OK. It was the first time we’d been apart since I’d left my job several months previously, so I was nervous, but he was mostly fine. (He couldn’t find the bathroom, despite my having left the door wide open.)

(Conference slide: No one needs to suggest to me to write rather than clean!)

The hotel was built into a shopping centre and library, right next to a big square. There was a festival on that day with bouncy castles, face painting, singers, and jugglers.  I thought what a shame it was that Doug wasn't well enough to spend time sitting in the library, and then sitting outside on a bench watching all the fun & games, magicians, and musicians. There was also a tiny museum across the street; the previous year he’d have been able to go and investigate it. 

When I went back to the room after pitching my dementia novel to an agent, our Toronto Star friend was there, as planned. He took Doug out for lunch, and spent the afternoon with him while I had lunch & went to all three afternoon panels. At 5:00 pm I took Doug down to the food court in the mall and bought him supper, then we went back to the room and I snuggled him into bed, sitting with him until he had dozed off. 

I skipped the reception and went to the conference dinner (held in the hotel). I invited myself to sit at a table with space and it turned out that one of the other women had been at a writing masterclass with me the previous spring. It was also the ‘naughty’ table, with lots of laughter. So much fun. There was a good Keynote speech, then awards and a raffle. At 8:35 I snuck away, so I was back in the room at 8:40.

Doug wasn't there.

This story has a happy ending.

I phoned his sisters and our closest Toronto friends, in case one of them had come to visit him and take him out and I’d missed a text or phone call. No luck. So I reported him to the hotel. First they went through the entire hotel, and I walked though the now-empty shopping mall with the mall security. Fellow conference writers helped look through the parking lots and park across the street. At 9:10 I called the police, and they arrived within 10 minutes. The police were super efficient, thoughtful, gentle, and kind, and I was impressed with all of them. 

I had a photo of Doug from the previous day which was posted on the police twitter feed, and shared across social media. I was pleased I'd been too cheap to buy drinks with dinner, and was thus clear-headed. The hotel found Doug on their CCTV video, leaving the hotel at 7:47 pm. The missing persons report took a policeman and I about 20 mins to complete and there was only one answer I didn't know (if the scar on Doug's wrist was vertical or horizontal). I learned that exit-seekers tend to walk in as straight a line as possible. (Doug did exactly that, walking north, perhaps towards his childhood home.)

One funny moment: a policeman asked me if Doug was a good walker.  I said yes. “Yes, he is. We used to walk something called the Pathfinder March, which comprises 46 miles in a day, but was 50 miles for us once we’d walked to and from the starting line.”  “Oh!,” he said, looking startled. Later he told me that had been useful information as it meant they immediately widened the circle of search.

Doug’s sisters came to the hotel then went out looking by car. Two of my Besties jumped out of a hot tub in Markham and arrived with recent photos, snacks, and a thermos of tea. (Besties are the best!) “OMG,” said one of them. “I thought your mother had a stiff upper lip - !” 

Many conference attendees were sitting in the bar next to the lobby, and kept coming out to hug me, ask how they could help, and tell me they were praying for an HEA (happily ever after ending). (Writers are the best!)

Doug was found trying to cross a six-lane highway at about midnight, and we were reunited soon after. When he was escorted into the hotel lobby I let myself cry the tears I’d been holding in. 

Reunion after midnight: Bestie, Doug, Bestie, Me.

Another funny moment, after it was all over: the agent I'd pitched to came and gave me one more hug and said, “You know what?  Why don't you send me your dementia novel?”  I had no idea if this was ‘you know what you're writing about’ or ‘you deserve a win today’ but it made me smile. 

From that day on, until he moved into long term care, I took a photo of Doug every single day so I had exact details of the outfit he was wearing. I memorised (and also photographed) the scar on his wrist. I bought us matching hoodies so that if we were parted for even a moment I could ask bystanders to look for a male in ‘this’  hoodie. I bought trackers (designed to trace phones, remote controls, and backpacks) and put them in a pocket of every one of his jackets. I had a dementia lock installed on the front door. 

The happily ever after was not only that he was safe, and he was found. He slept through the night, and the next morning he had no recollection at all of the previous day.  And off we flew to BC, for what became our last holiday. 

Tofino sunset

Happy Birthday (Birthday Blues)

So many of us have celebrated a birthday during the pandemic it ought not to feel unusual, unfair, or unhappy. Mine, long ago in the early spring, was a lovely day. On Monday my beloved Doug turned 65, and I had a bit of a wobble.

I'm not entirely sure how a province can recognise a birthday . . . but thanks, Ontario.

I struggle with the idea of “choosing to be happy” but I always strive to be cheerful. I’m aware that “happiness” and “cheerfulness” are considered synonyms for each other; in my own personal dictionary I think of happiness as the opposite to Depression (not a choice), and cheerfulness as an opposite to gloominess (which I do consider to be a choice). At best, pedantic, but really . . . nonsensical. (I’m not alone: see any debate about the difference between the colour grey and the colour gray!) 

It wasn’t the pandemic, though that didn’t help. Last year my family celebrated with us in the dining room; we had presents, and lunch, and cake, and bunting. This year we had cards, and a cupcake, just the two of us in his bedroom. I read all the emails from all his friends, and delivered all their hugs. With every hug, I gave thanks: I am aware that for too many people, Covid has stollen the opportunity to hug their loved ones. 

Once one of Doug's nicknames was Cheerful Man;  it suited him perfectly. He was, and is, cheerful most of the time.

It was the progression of the Dementia. Doug gave no indication that he understood it was his birthday, or what a birthday means. 

I’m not going to search #thisiswhat65lookslike but I’m sure that hashtag exists. And, like so many hashtags, I suspect it’s an abbreviation - I would understand that the user really means “this is what my version of 65 looks like” or “this is what I look like at 65” (or maybe even: “hey, this is what you could look like at 65 if you make the same choices I've made around diet/ exercise/ wardrobe/ cosmetic surgery . . .”)

In the olden days 65 was a milestone of sorts - an age when people might consider retiring. Now - is 65 the new 55? Or perhaps it’s even the new 45? Again, I’m not going to search, but I’m sure there are lists of people who made dramatic positive changes to their lives after they turned 65:  started a new career, married, published their first book, (men who) had children . . . 

There will be no great changes to Doug's life. 

I was sad. Sad for all of Doug’s, and our, unfulfilled dreams. Sad for the futures -  his, ours, mine - which will be so different from the ones we’d hoped for. Sad for the plans we made which will never come to fruition.  The difference between what might have been, and what is. 

Thank you, Mum! 💝

I excused myself to have a little cry, dry my tears, and find a smile. Then I looked through a scrapbook with him and talked about all the wonderful times we’ve shared. I retold the story of his birthday weekend in Paris a few years ago, when he mistakenly caught an earlier Eurostar than the one we were booked on. (Terrifying at the time, funny after I knew he was OK.) 

We'll always have Paris . . . and yes, I'm glad I bought this touristy souvenir 

When I was leaving, I gave him a hug . . . and he hugged me back. It wasn’t my birthday, but that was the very best present I could have asked for. 

Onwards, with love. 

Years of experience

I recently discovered an old, old cover letter I’d written (being used as a bookmark in a Brewer’s Dictionary of Phrase & Fable) back when I worried about my very spotty cv. “Years of international experience across different areas in a variety of industries - combined with blah blah blah - make me the ideal candidate for the position of . . .” was how I tried to gloss over my “gap year” of seven years, the stretches of time I spent traveling (unemployed), and my jumps from kitchen to gym back to kitchen to sub to shop to cruise ship to office back to kitchen . . . 

Grand Cayman, late 90s, co-pilot, Atlantis Submarines. (The epaulettes are great, but where's my hat? Why am I not wearing more sunscreen? Why am I not sitting up straight?)

It made me smile; I was so earnest, determined to find the skill set each random job had given me that resulted in my “ideal candidacy” for whatever position I was applying for. 

It makes me smile; because I haven’t changed.  

So long ago I wore a watch, not a Fit Bit, to tell time. So long ago I wore tights. And yes, this has been my hair style ("style" - ha ha) for almost half a century!

At the start of this Dementia journey, I worried that I had no training, and that my inexperience could harm the man I love most in the world. My nephew suggested that what’s needed is a course for spouses like me. That parents-to-be can take lessons in how to wipe a bum, change a diaper, dress someone who is unable to help with the process. Maybe if I’d been lucky enough to raise a family, some of the things I didn’t know wouldn’t have been so unfamiliar. (Although I imagine that changing a child’s diaper is very different to changing a spouse’s diaper.)

I was moved by my nephew’s suggestion, grateful for his insight and compassion. Since the beginning of Doug’s illness, my nephew has been thoughtful, helpful, and kind. One holiday he took Doug to the washroom multiple times a day under the ruse of needing it himself, when Doug was unwilling to admit he didn’t know how to find it. He played Chess without winning every game, long after Doug had forgotten the rules. When he noticed Doug struggling to zip up his coat, or cut his meat, he managed to help in such a way that Doug took no offence. One day Doug turned up at my sister’s house, completely lost, and my nephew said, “Oh, I was just heading that direction myself,” and took him home. His generosity, his simple acts of kindness, his figuring out what needed to be done and just doing it was often the gentle reminder I needed that I just have to do the best I can.

One of Doug's favourite things is being an Uncle

I first read A Prayer for Owen Meany many years ago. There is a moment towards the end of the novel when everything clicks in to place and the reader realises, at the same time as the characters, what a hundred small incidents have been leading towards. I remember the novel as a wonderful piece of writing and that moment at the end as especially powerful. It was the reverse of throwing a pebble into the lake and watching waves ripple out . . . instead all the waves, for the entire novel, had been moving towards this tiny, yet life-changing, pebble.

Ripples. Photograph by my Mum

I tell myself that everything I have experienced, everything I have learned, has contributed, in some way, to my ability to be a caregiver. When I worked in a trilingual kitchen and travelled solo through countries whose languages I didn’t speak, I learned non-verbal communication skills. When I was a co-pilot on the tourist submarine, part of my job comprised making the ordinary sound extraordinary, and helping people see and understand what they might otherwise have missed. My role as a cruise ship liaison taught me patience. Various jobs across the years (swimming instructor, peer supporter) taught me how to share knowledge. My Aunt Em lived with Parkinson’s Disease - watching her caregivers was a hands-on how-to course. Living through Covid is teaching me . . . so much.

It’s possible the only person I’m fooling is me. But that’s OK; I’m the only person who needs to believe this story I’m telling myself. 

As Time Goes By . . .

When I am in the world with Doug I try to live in the present; I try not to dwell on what could have been, or what isn’t . . . though of course I am all too aware of changes.  In the world of fiction (reading, writing, workshopping), I am interested in the ways different authors map the passage of time. (One of many examples I love: Alice Munro’s Train.) These two worlds of mine are overlapping in my current work in progress, as it features a character living with memory loss. (Because: write what you know . . .) I believe memories come back to us in fragments, and with those fragments time moves in fits and starts, jumping back and forth, imploding and exploding. 

Doug loves poetry, and his Scottish ancestry, and has always observed Robbie Burns Night. I’ve heard many great stories about Burns Suppers Doug hosted before we met. His passion for detail was such that, not only did he make his own haggis when necessary, he memorised dozens of Burn’s poems, and took voice coaching in order to get the dialect correct.

Our first January together we went to his local with two of his close friends, where he addressed the Haggis, and recited To A Mouse.

(January 2009, Wilno Tavern, Ontario)

Every year thereafter, we celebrated together. At home with friends, or just the two of us. Out, at our local pub, or at more formal events. 

(January 2013, our home in Cambridge)

In 2014 we went to Alloway, South Ayrshire, to the Robert Burns Birthplace Museum for the Supper. A TV reporter at the party asked Doug if he had an opinion about the approaching referendum for Scottish independence. After filming for several minutes, the reporter paused to clarify if Doug was a local. Doug shook his head. “I’m a Canadian, living in Cambridge. But you asked me if I have an opinion, and that I have.” I remember everyone laughing: the TV crew, the other guests, the Supper organisers, the wait staff, and, most of all, Doug.

(January 2014, Robert Burns Birthplace Museum, Ayrshire)

In January 2018 Doug needed help getting dressed in his kilt & could no longer recite To A Haggis from memory, but it read it. He read it well. 

(January 2018, my childhood home, Ontario)

By January 2019 dressing him in his kilt was too much of a challenge. My stepdad addressed the haggis; at “An’ cut you up wi’ ready slight” we cued Doug to open it with his Sgian Dubh.

(January 2019, my childhood home, Ontario)

This year we snacked on whisky-infused Cheddar with oatcakes.  I read some of Burns’ poems, we watched poets reading Burns on You Tube, and we listened to Scottish musicians and singers. “That’s beautiful,’ I said, when the Royal Scots Dragoon Guards’ pipe bad played Auld Lang Syne. “Beautiful,” Doug echoed.  When we danced to I’m Gonna Be (500 Miles) we managed to transform his room into a cèilidh, if only for a moment. But it was a moment, a happy moment. 

(The Brig o' Doon, painted by my stepdad)

How much do I want to know?

When Doug was first diagnosed with MCI (Mild Cognitive Impairment) I wanted to know everything. At the time I was somewhere in the middle of my dissertation - research was my life, and I was good at it.  Also very good at procrastinating by way of veering away down rabbit holes . . . 

My dissertation had a deadline. At some point, I had to stop reading about Alice Munro’s work, and use the information I had to write my own work. No one, alas, was going to stop writing about her fiction in order to give me time to stop researching (especially not since she’d recently won the Nobel Prize!). I had to make choices: would I read French articles written by Canadian academics (in translation)? Articles by French academics, in translation? Other academics in other languages? I was great at self-sabotage, fearing Imposter Syndrome, all too aware I’d only scratched the surface of what could be learned. 

(I spent hours and hours of my life at this desk . . . and this is the only photo. So thankful my friend, Amy, made me a scrapbook of our years at uni, and thought to record this, erm, mess . . . ) 

I discovered Baycrest, in Toronto, and bought Living with Mild Cognitive Impairment, which I recommend as an introductory read.  Its tips and suggestions worked well for some time - time when I prayed that Doug would be in the lucky 10% of people living with MCI who don’t develop Dementia. 

When it became clear that Doug was not, alas, in that 10%, I borrowed every book from every library. I spent (far too many) hours in front of the computer. When we returned to Canada I managed to get Doug an appointment at the Élisabeth Bruyère Memory Program in Ottawa. We finally got a local family doctor (a challenge in this town). We saw the local Seniors’ Mental Health expert. I stayed in touch with our original doctor from Addenbrooke’s. When I learned one of our fellow travellers on our Civil War tour was a neurologist who wanted to write a book, I asked to sit with him at dinner and bartered an exchange of information. Almost too late, I discovered Dementiability, whose workshops I highly recommend. 

What’s helpful to one person may not necessarily be helpful be to another. That said, I have found these books useful on my journey. The 36 Hour Day (new edition coming in August),   Conscious Caregiving Guide and its companion, Conscious Caregiving Workbook (all available at https://chatnoirbooks.com or your local independent bookstore).

Of everyone I could, I asked the same question (one question that can never be answered): How long do we have? How long does Doug have?

“How long is piece of string?” my maternal grandmother would have replied.

I am not a neurologist myself; I am an expert only in terms of my lived experience. I know I can only know so much. At times, the knowledge is overwhelming, and I have to ask myself how much I need to know. How much of the future do I really want to see? I have to remind myself that I can’t keep looking for a magic answer - there is no magic answer. 

The doctors are the experts and I choose to trust them.

By the summer of 2018 I started asking myself if it would it be more helpful for us if I read one more book, or if we sat on our deck in the sunshine, feeding the ducks, just being together in the moment? 

And, really, isn’t all of life a question of how best we can spend our time? (And choosing how to define "best" for ourselves?)

There is so much that I’m aware I don’t know. There is, no doubt, much much more that I’m not even aware that I don’t know. But, for me, for now, I know enough.  I don’t regret the books I did read, but I don’t regret the ones I didn’t. Nor do I regret one second of the time my husband and I spent together, sitting on our deck.

“Lies, damned lies, and statistics”

(Doug and I on our wedding day, August 4th, 2012)

My first marriage was unhealthy, unhappy, and I am lucky to have survived. For a long time I couldn’t imagine ever choosing to be in another relationship. But then I met Doug . . .  We were both adults, and I warned him that, in Dr. Phil-speak, there were potential deal breakers. No abuse. No affairs. No lies, ever. 

I’m not sorry we had those discussions, but I had no cause to worry. Doug is faithful, trustworthy, caring, and honest. He was when he was well; he is now. 

It’s ironic indeed that I’ve had to accept that sometimes my telling him lies is the kindest thing for me to do. The contradiction of lies being more loving a choice than truth goes against much of what I believe. And yet . . . And yet . . . It has become shockingly easy to slip from truth to not-truth. 

(Doug's Mum and Dad)

It surprised me (so much has surprised me) when he first asked about his parents. His Mum died before we met; his Dad passed away in 2011. It broke my heart (so much breaks my heart) every time he said, with sorrow, “Dad hasn’t been to visit in so long,” or “I don’t know where my Mum is.” 

The first few times I made the mistake of telling him, as gently as I could, that his parents had passed away. I soon realised that that was news to him, raw as the day it happened, each time.

I started deflecting questions with non-answers like, “Oh, your Mum loves you so much! You’re her Golden Boy!” and “You’re Dad is so proud of you. I love that you both worked at the Star together.” 

Later, when he went though a phase of specifically asking where his Mum was, I started placing her in realistic locations: “She’s probably working hard. I think she’s out for coffee with your sister. I bet she and your Dad are at St. Jacobs market - they both love that market.” I learned how to introduce an idea which would divert, and trigger (I hoped) a happy childhood memory. 

Now his questions make less sense, I echo them back to him, in the hopes he’ll know I’m listening. If he asks, “Is the back-back a droopy Thane?” I’ll nod if it sounds like yes is the expected answer. “I suspect so. I think that back-back IS a droopy Thane.” If I think no is the better choice, I’ll shake my head.  “Not today! Not on our watch! That back-back is NOT a droopy Thane.” 

It’s the choice I’ve made, to lie, and it's the choice I’ll live with. I laugh at myself, sometimes, when I find I’m more truthful with our cat. “I’m off to visit Doug, I’ll be home in about 8 hours; you have lots of food in your bowl. I hope you see some squirrels today and have some good naps.”

(Piper pretending to pay close attention to all I say)

(An aside: a note about this blog’s title. I can’t even write that quote (attributed/ mis-attributed to Benjamin Disraeli by Mark Twain) without hearing my Dad’s voice. He often reminded me that facts don’t exist in a vacuum, that numbers can be easily manipulated, that an impressive looking chart or table won't hide a weak argument. I chanted it with annoyance during the mandatory Statistics course I took for my undergrad degree, because it ended my run of straight A report cards, and it became a joke between us.

Today, January 20th, would have been my Dad’s 98th Birthday, had he survived a car accident in 1999. He and Doug would have adored each other - I’m so sorry they never met.)

(My Dad)

Team Doug & Louise

When Doug and I first met (online) he wrote that he was looking for someone who would walk into his circle of friends, and whose circle of friends would welcome him. He put it far more eloquently than that - I’m sorry all those original emails are lost to a long gone email address, so I can’t quote him exactly. 

His friends welcomed me, and mine him. My sister gave a beautiful & funny wedding speech, in which she admitted that when he first met Doug, her husband told her that if Doug and I broke up, he’d keep Doug, thank you very much. Luckily, he’s never had to make that choice! (And yes, of course he was joking. My brother-in-law and I adore each other. But how wonderful to know my family has loved Doug, from the very first. It goes both ways: being “Uncle Doug” to my nieces and nephews is one of Doug’s greatest joys, and he has loved spending time with all of my family.) 

(Photo: my circle + his circle on our wedding day.)

From the start of our relationship, I have truly felt we were partners, making decisions bigger and smaller, as a team.  And I knew he always had my back. (An aside - but a great example of how lucky I am: Doug strongly encouraged me to apply to grad school. When I narrowed down my options, he had only positive comments about each. If we moved to Oregon, he would fly fish. If we moved to Scotland, he’d be able to join a pipe and drum band. If we stayed in Ontario we’d be close to family and friends. I should focus on the professors I wanted to work with - he'd be happy with whatever choice I made.)

As his Dementia progressed, all the decision making fell to me. The tiny, daily, often inconsequential choices and chores: what’s for dinner, paying the bills, doing the housework. And the larger, life-changing decisions: shall we stay in England or move back to Canada, do I need to leave my job and stay home, what do I do when I can no longer cope by myself. 

When I asked his friends for advice with regards the move to long term care, I was hoping they would provide clarity by putting his needs ahead of mine. But they are truly now our friends, they considered both Doug’s life and mine. Their advice was loving and objective. 

The past year I’ve thought of us as a triad. Making decisions now has to be best for Doug, best for Louise, and best for Doug-and-Louise.  We are still Team Doug & Louise, but anyone who is on our team, has to be pro-Doug, pro-me, and pro-us. I didn’t realise I was “setting boundaries” (go me!), when I let go of people who aren’t part of my life AND his life AND our life. It is a great shame for Doug that any of his friends who dislike me have no way of maintaining a Louise-free relationship with Doug.  (Their loss too, but their choice.)

Truly, I did walk into his circle of friends, and he into mine, and those friendships have been one of the greatest gifts in our life. 

(Photo: pre-Covid, an annual weekend gathering with Doug's longest-term friends.)