Thursday, January 14, 2021

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.)

Monday, January 4, 2021

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


Tuesday, December 29, 2020

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. 


Saturday, December 5, 2020

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)


Monday, November 23, 2020

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)




Saturday, November 7, 2020

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.) 


Saturday, October 31, 2020

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)