It felt like I was trying to sneak into some speakeasy. The sign on the door said “staff only”. It opened a crack when I knocked and a burly guy with headphones half growled, “who are you?”
Did I have the right day, I wondered, or the right TV studio? He led me down a hall with equipment slung everywhere and dripping umbrellas. “We’ve got a big show tonight, he mumbled, gesturing vaguely to the cavernous room bathed in greenish light. He didn't have time, she said, to brief me on The Show, so I would have to wait for instructions. None came for quite a while. Restless, I observed other probable guests milling around and looking as mystified as I felt. Piles of coats, purses and backpacks grew everywhere. The studio was packed wih cameras, cords, monitors and soundboards. A camera on a boom loomed over it all. Techies buzzed with purpose, ignoring those not wearing the volunteer name tag. Like me. I felt like I was underfoot.
Eventually a woman who carried herself in every way like she was the head honcho, called for silence. She was the Director, and introduced herself as Fiona. Everyone stood at full alert, and I was impressed with her sang froid in the midst of it all. Fiona thanked everyone for coming out on a rainy night and reminded us that this was an all volunteer operation. This night's production would be tricky, she warned. There were lots of guests, and some unknowns to be worked out. A young man with an Elvis pompadour crooned sad songs as he pounded on a keyboard, someone else fussed with a display of eerie dolls, and there was a picture gallery of buff women in provocative poses. But what was that humongous orange feathery looking mask doing crumpled on the floor?
We needed a run through. Fiona, said, rising to be heard above the hum. She reminded everyone that hitches were not goofs but rather learning opportunities. Even so, she warned, "keep the gaffes to a minimum please." Once cameras rolled for the hour long show it would be live to tape. That meant there would be no second chances.
Now the volunteers leaped into action. Clearly this rehearsal had nothing to do with we guests, so still, we waited. Details about which camera would zoom in when, which camera angles would work best, sound challenges, and how each host would flip the action to the next. I was fascinated. But I still stayed out of the way, still only an observer. .
This is a community variety show and I was here to introduce my book, The Dwindling, A Daughter's Caregiving Journey to the Edge of Life. I had no script, but a general idea of what the host wanted to hear about. My nervousness was pure ego. How would I look on camera? I kept tugging at my blouse and fiddling with my scarf and fluffing my hair. Other guests were also preening, some were taking selfies, and still others were zoned out in their smart phones.
Half an hour into the practice, the production hit a wall. Proceedings came to a sudden halt. The Chinese Cultural Society, in partnership with the Scottish Society, were to talk about the big dinner planned to concelebrate Chinese New Year and Robbie Burns Day. In high pitched Mandarin a clearly anxious elderly woman was pouring out her soul to no one in particular. Even without words, we all knew she had problems. Translated, we learned, “our esteemed leader says there must be more space for our dragon-sword dance. And she wants to know where will we have our fashion show? We have many ladies and they will also dance” Fiona blanched, “Fashion show? Dance?" How could all this have slipped by the producers? The old Chinese matron looked as if she would cry. The line of elderly women in ornate silk dresses, with stiletto heels and fans waving coquettishly but nervously, and that slinky orange dragon head and tail operated by two eager boys began to sway wildly. We all held our breaths while the technicians paced out how much space could be made available. In the end, this drama within The Show would have to unfold in a square footage not much larger than a family living room. It took another half hour for everyone to agree it might work. Still, confidence level in this was low.
By now I had been in this studio for more than three hours and felt my stomach growl. No food or drink was allowed in the studio however. When would this darn taping begin? I felt growing impatience. Finally Fiona put her hand in the air and gave that five-four-three-two-one finger flip that I had yearned for. It was time for the real thing.
The next hour passed in a minute. As the dragon staggered onto the floor and the Chinese fashionistas minced delicately down the steps clutching the bannister, everyone held their breath. When the six minutes of this segment was over, Fiona air punched her triumph and the technicians high fived. But the taping dragged on.
When I was going to be up next, I flashed into focus. Someone settled me in a chair and angled my body just so. Another hooked me up to a mic, apologizing as the wire was fed up the inside of my blouse. I pulled down my sweater one more time and brushed away a stray strand of hair. I blinked in the strong light, and sucked in. ”...And we’ll get back to the bikini contest after this next segment, where we will hear from a local author…” Jane, my interviewer, tensed ever so slightly as she received this cue and mouthed “show time.” I flashed my biggest smile. “…Tell me,” she said, holding up my book for a close in shot, “what is this book all about?” We were off.
In rapid fire, we batted ideas back and forth about the caregiver’s struggle with identity and the care receivers feelings of frustration because of their vulnerability but most of all, their loss of control. We also spoke of caregiver's isolation even in the intensity of the caring relationship. In minute three, I Jane raised her pinky finger, ever so slightly. and I knew the gesture. It was time to wrap up the content of the interview and get to the promo part. So I explained about my talk coming up at the seniors centre, and the interview wound up with Jane's invitation for all the viewers to hurry out and buy my book. Did anyone else find it odd that my story of the challenges of dwinding was squeezed between muscled women in leotards, talking about their challenges with performance weight and six packs?
Someone unclipped my microphone. “You were great!” he said, "Interesting," said someone else, "...I have a mother in care." I rummaged through the pile for my purse. The same volunteer showed me to the door. “It’s fun, isn’t it?” He said, not expecting an answer.
Driving delicately home along the rain-slicked highway, I reflected on this experience. For five hours I had been “done to." Though it was obvious that as "the content" I was the whole point of the show, I had felt sidelined. Is it how being cared for might feel? My nervous impatience in the studio reminded me of the hours waiting, so often, in emergency ward anterooms. Those technicians with their preoccupation could have been the medical specialists that so often swirled around my parents, sharing nothing. Most of all, I thought about how having no control even for five hours had rattled me. Hey, wasn't that the life long reality of the dwindler?" I wondered how they coped inside.
As I pulled into my driveway I offered a silent thank you for the insight this time had given me. Being forced to be passive when I wanted to act had been unsettling. It had given me a new understanding. As I went into the house with the “I’m home” that would lead to dinner soon, I smiled. "How did it go?" my husband asked.
“Art imitates life," I replied.
This was my suitcase filled with pocket sized notebooks. It was step one in my writer's process.
I started out 2018 with a request from a group in North Vancouver. Would I answer some questions for the newsletter? One area where this group was curious was my writer's journey. I realized that this might make an interesting blog, so here goes.
1. Tell our readers a little about your journey to writing this book. What prompted you to start?
When my caregiving years ended in 2011, I thought I wanted to get back to my life-interrupted. But I moped, I fiddled, and I knew I was in a stall. People said I was grieving. I knew it was more than that. Those old goals belonged to a version of myself that was gone. Caregiving had transformed me. It was Judi, my twin and co-caregiver (daughter on deck while I was daughter at a distance) who could feel my malaise and offer a way out. “You are a writer,” she said, “And you have a story. So tell it. Writing a book is your new normal.” So I began.
Writing the book was a challenge. I had ten years of hoarded information. It filled the room that had once been where my parents stayed on their respite visits. Now it was my writing space. A stack of records of our care conferences covered a carpet stain that I recalled with a smile as the spot where the full commode tipped over. The visitors books, kept for years for visitors to report their impressions, so the day to day perspective of others, not the caregiver twins, could be preserved. Those books became the header to my year by year paper piles that covered the floors. On every wall space, a forest of sticky notes grew. It was a timeline to help me recover details of what happened when. Names of specialists and other important people were in pink, my flashbacks to troubled times were captured in fluorescent yellow, and those events that looking back seemed to be turning points were lime green. And so I pieced together the details of what had been a fog and the book outline took shape on the wall.
Early versions of the manuscript were heavy with sadness and even guilt. Had I done right by Mom and Dad? Then there were a few angry versions while I processed feelings around the support that did not come. Subsequent versions gradually found the balance between dark and light. I was almost there. Coming to the final versions, I began to see the arc of the story and that my narrative had much in common with the journeys of other caregivers I was meeting. “Yes” my early readers said, “I see my story reflected in yours. Keep going."
My darkest day though was when my brother, hearing me describe my progress in a voice I knew was too passionate for his taste, said dismissively, “No one will want to read that.” Thunk! That one negative, delivered in a minute long conversation, snuffed my zeal for months. Again, Judi came to my rescue. We talked through this writer’s block. We talked about siblings and my fears of hurting them or our relationship by speaking my truth which might not coincide with theirs. We agreed that this brother had been the least helpful to our parents in their dwindling. By what right could he quash this story? So I began again, now with a tougher skin but more aware of my brother’s partial truth. Denial would be a force limiting my readers. There would be many who might love the book but resist in case it dug up old bones for them.
Four years from the day I took up my pen, the book manuscript was launched in a coffee party on Mother’s Day 2017. From that day forward, my life has speeded up. I had started as a caregiver, became an author, and now I was emerging as an advocate for the recognition, respect and support to caregivers, and a boost in quality care available at the edge of life.
2. You have mentioned in interviews that writing was a way to cope when you were caring for your parents. Can you offer tips for caregivers wishing to use writing as a coping tool?
Don’t just wish to write. Do it!
I used little coil notebooks that fit into my purse and went with me everywhere, along that a pen that worked. My book was private. It was not a journal, not a diary but a place for my stray ideas and insight. I wrote out what was nagging at me too. I didn’t need spell check. I didn’t even expect sense in my jottings. I didn’t even reread them.
I did title the books, pasting a label on them dated from the first entry to the last, because I wanted some sort of order. And I hoped that some day the clarity I obtained at the time in writing the notes would be even greater insight if I ever looked at them again.They delivered. When it was time to “really” write, there was this suitcase full of feelings. So my crutch living the caregiving journey became my inspiration as I wrote about it.
What were the highpoints of your writer’s journey?
it's about the journey
Caregiving was my first and finest journey. Writing this book about it was the next. It lends support to other caregivers who say, "that happened to me too." I'm on another journey now, advocating for caregiving and an activist to bring on better ways of thriving as we age. It's all brought me purpose and meaning, Come along and get some of that too! I'd love to share your stories. Boldly speaking out about our experiences makes us all part of the change we want to see. So
Join me! Let's talk!