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.
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!