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.)

The Lasts

I’m not sure when I first smiled, first rolled over, or ate solid food for the first time. I assume I reached those milestones at a reasonable rate, but I don’t think my Mum kept a record. 

I haven’t kept notes of my husband’s everyday accomplishments; sometimes it takes me some time to realise that something has happened for the last time. The last time he made me a cup of tea. The last time he baked a loaf of bread. The last time he was able to read a newspaper article. The last time he wrote and sent a letter or an email. The last time he could use a knife and fork to cut a piece of food and feed himself. I much prefer to focus on what he can do, not on what he can no longer do. But I am thankful that I have photos of everyday moments from his & our past. 

Breads & Banjo - everyday moments 2009 - 2013

Throughout his decline, I have chosen to try my best to remain optimistic. When we flew across Canada to Vancouver and took the train back to Toronto in the autumn of 2018, I didn’t realise that would be our last big holiday until we were home. And even then I thought shorter closer-to-home vacations could still be possible. But they were not. I embraced day trips, often with our friends Donna and Dennis. 

Oh look! Many of our outings involved food . . . 

I can’t remember when Doug and I had our last real conversation. It has been a long time since we’ve been able to have even the simplest of discussions, but I miss them. I miss them every day. I would like to tell him that there are already vaccines for Covid, and that Biden defeated Trump, and that our niece is excelling at university. He loved the little news items that some people overlooked, but he also loved the front page stories. He would have followed Covid reporting with great interest. He would have had a lot to say about the Covid lexicon we’ve all acquired. 

Reading the Toronto Star at our local library - 2016

I am thinking about endings this week because Dennis has passed into the spirit world. Three weeks ago he, Donna, his sister-in-law, and I danced in his living room, sang Christmas carols, and ate ice cream. Four weeks ago we had breakfast with two other friends. This summer we had weekly coffee mornings on the deck, and watched the ducklings grow. 

Donna, Dennis, & ducklings on the deck - summer 2020

I am all too aware that there are things my husband can do now, that too soon he will no longer be able to do. I am aware, but I am still not taking notes. I don’t want to record the lasts; I want to hold on to the moments we have. 

Dennis & Doug - January 2019

All change . . . All change . . .

 

And just like that, Doug has been moved from the hospital unit back to his long term care home, and we are only a 15 minutes drive away from each other!

Because he transferred from a Yellow Zone into a Green Zone (Ontario Covid-19 tiered system) he has to quarantine for 14 days. Never mind that six hours after we arrived it was announced that the Yellow Zone was being raised to a Green Zone - which would have eliminated the need for quarantine. Never mind that he transferred from a Covid-free facility into a Covid-free facility. These are rules we'll follow, because we care about the health of strangers. 

I can find a lot to be thankful for: He’s been given a double room to himself, on the ground floor, with a lovely view of the coniferous forest, and a birdhouse which attracts Chickadees, squirrels, blue jays, and pheasants. We’ve had lots of snow in the past week, so the firs are Christmas-card pretty. He is wearing his glasses this week (not always the case), so it’s possible he sees some of the birds. At the very least, the window means his room is filled with light during the day. 

The door is always open, and the chest-high plastic banner works surprisingly well as a barrier. I have been granted “Essential Caregiver” status so am allowed to visit him whenever, and for as long as I like, despite the province-wide lockdown which resumed on Boxing Day. I arrive in the morning - sometimes he’s up and having breakfast, sometimes he’s been fed, sometimes he’s dozing in bed. He’s always cheerful, and soon after breakfast has a nap in the comfy chair. We pass the day together listening to music, dancing, playing with a beach ball, petting his kitty cat, watching people walk by in the hallway, and looking out the window. I feed him his lunch and supper, hold his hands during his care (toileting), tuck him into bed at night, and read poetry to him until he’s asleep. 

There were, and are, challenges: Doug has developed a distrust of elevators, and didn’t want to get in the one that took us down three floors to my car. It took three of us to help him into the car. (In May, he could still get in and out of a car by himself.) He was distressed for the duration of the drive. I envisioned being a passenger in a vehicle I didn’t recognise, on a highway I didn’t recognise, with no understanding of where I was or where I was going, and no control at all . . . it was easy to imagine how scared I’d be. But we arrived, and he appeared to settle in, more quickly than I’d dared hope. 

I was extremely worried that he would suffer, being kept in a bedroom for two weeks. Walking the halls is an important part of his daily routine, and his only form of exercise. It appears to make far less of a difference to him that I’d thought it would. 

The sad reality: I’m not sure how aware he is about all the changes in his life this past week. If he knows he’s no longer where he was for the past eight months, or knows he’s return to the place where he lived before that, I can’t tell. 

Heartbreaking (to me): This is first year that Doug has given no indication that “Christmas” means anything at all to him. I shouldn’t be surprised, but I’d hoped that the sound of carols, music, CBC’s Fireside Al Maitland reading Forsyth’s The Shepherd on Christmas Eve, or the taste of shortbread and rum balls, or the act of opening a stocking, unwrapping a present, holding a Christmas card . . . . I’d hoped that something would trigger a happy memory for him. If it did, I was unable to read any expression of recognition, and he was unable to communicate that happiness. 

I am deeply grateful for this time we’re able to spend together. The first several days were heart-rendering more often than heart-warming; I hoped he was experiencing time differently than I do - that the days were not so long or so empty for him. Now that I’ve better adjusted to this new routine, I am able to appreciate moments, fleeting as they may be, and all the wins. He buttoned and unbuttoned his shirt, he counted to 11, he caught a ball and threw it back, he made a face imitating an opera singer, he reached for a piece of pie and ate it with clear pleasure. He laughs, he smiles, he often replies "hello" when he's greeted, and sometimes he looks up, sees me, and says, "Hi there." 

He is safe, he is loved, he is being very well cared for, he is cheerful far more often than not, and we are spending our days together. This is enough. 

Onwards with love. 

C is for Christmas, and Covid, and Caregiving

 

(Stamp from Ali Edwards' December 2020 'Stories by the Month' kit.)

Doug loves Christmas. I think he has always loved Christmas; we have a few of his childhood Christmas photos which he treasures. The years we celebrated together when he was well he started making presents in the summer (jams, chutneys, relishes, and pickles for his famous gift baskets). He loves the lights, and decorated trees, and snowy days, and baking, and music, and stories, and above all, time with family and friends. We each brought traditions into our marriage, and we had just enough time to create a few new-to-us traditions as well. 

(Decorating our tree, December 2017)

“You have to plan ahead to help someone with Dementia get the most out of the holidays. No one else is going to do it for you or for them.” -Sharon Roszel, caregiver for her mother. (2013)

In 2017 I had a wobble at the beginning of December, when I realised how significantly Dementia was going to shape the season, and that we wouldn’t be able to celebrate as we had in the past. That’s when I found Sharon Roszel’s quote, above. Bless you Ms Roszel, whoever you are. I adjusted my attitude, reminded myself how much Doug loves Christmas, and was able to focus on the things that mattered most.

(December 26th, 2017)

That same year I adopted this ‘Christmas Manifesto’ from a scrapbooker. (Apologies that I'm unable to credit the original author.) 

My December Wishes - More or Less

More hugs, more laughter, more contentment, more peace, more magic, more gratitude, more joy, more love. 

Less shopping, less spending, less clutter, less frenzy, less frustration, less sorrow, less stress, less disappointment.

In the years since, we continued to adapt as necessary (limiting ourselves to a one event a day, gathering in small groups, asking everyone to wear name tags, ending the day’s activity by mid-afternoon, keeping fragile items tucked away 'because of the cat').  

(Piper under the tree, 2017)

This year Covid has changed our holiday once again. 

I am lucky & grateful that Doug set up a number of clues to help me navigate the season. Fundraising requests addressed to him have arrived in the post, so I’m able to continue to donate in his name. There will be presents under the tree for our nephew and nieces from Uncle Doug. My Mum, sister, and I have baked his favourite treats. And on Christmas Eve, I’ll play the following CBC recoding: 

“As we have nearly every Christmas Eve since 1979, “As it Happens” presents Fireside Al Maitland's classic reading of ‘The Shepherd”, by Frederick Forsyth. The year is 1957. An RAF pilot is heading home from Germany for Christmas. Fog sets in, and all radio communication is lost. Here now is former “As it Happens” host Alan Maitland with ‘The Shepherd’.”

(Tradition: an orange in the toe of the Santa-filled stocking)

(Christmas Trees, by Robert Frost)

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)