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?
This week I had an article written about me in the Vernon Morning Star, under the byline of Parker Crook. People say it tells a good story. I figure, why not share it with my readers? I'm just back from my book related trip to the Okanagan, and this piece helped me to find audiences that otherwise might have missed me. So thank you Parker! He writes....
As the median age rises steadily in Canada, concerns regarding palliative care rise with it
Fertility is down and people are living longer.
The answer to the conundrum, according to Qualicum Beach author Janet Dunnett, is the utilization of family caregivers. But it’s a hard job wrought with stress, difficulty, and long hours, which Dunnett resonates in her book, The Dwindling: A Daughter’s Caregiving Journey to the Edge of Life, for which she will hold an informal launch at Vernon’s Bookland Aug. 30 from 12 to 2 p.m., and a reading from 7 to 9 p.m. at the Okanagan Regional Library.
“My purpose, far beyond book selling, is to support the recognition, respect, and support given to unpaid family caregivers,” Dunnett said. “Getting to that requires those who know the story of caregiving to tell it with feeling and often, and with balance of course… There’s bliss with the grit.”
The Dwindling follows Dunnett’s decade long experiences of caregiving for her parents, and serves as a reflection for the stories of other caregivers.
“It was becoming clearer and clearer and clearer that my parents were fading,” Dunnett said. “(There were) all of the little signs that they weren’t going so smoothly.”
Dunnett lives on the Island, and throughout her caregiving, she assumed the role of daughter-at-distance for her parents in Calgary, and supported her sister as daughter-on-deck.
“More and more, daughters are caregiving at a distance,” Dunnett said. “But distance needn’t take anyone off the hook. Together, my sister and I found a way to work together and be there for the parents.”
Throughout their time caregiving, Dunnett, as a writer, kept a log of what had been occurring. It wasn’t until after her duties ceased that she realized it was a story she had to share.
“I was feeling that it was important to tell a certain story,” Dunnett said. “It was our story, but it was an important one.”
The Dwindling talks of Dunnett’s hardships during the caregiving process, whether its the constant travel or worrying from a distance, and the struggles that go along with it. However, through the hardhips came positivity.
“This is not all a negative story — it’s a crisis with an opportunity,” Dunnett said. “Out of it is a lot of strength too.”
Through caregiving for her parents, Dunnett said her family became closer. It brought her and her sister closer together, and ensured her of the shared love between Dunnett and her parents.
Though, with Canada’s aging population, Dunnett is concerned with the lack of potential caregivers for her generation: the baby boomers.
“As more and more of us close the line, fewer and fewer people are in line to take on the job of caregivers,” Dunnett said. “We’re in total denial that our time will come. For all those reasons, we’re just not paying enough attention to palliative care.”
This is particularly worrisome, Dunnett said, as Canada’s palliative care system is more a dream than a reality. The ending result is that caregivers are forced to be the glue that holds the health care system together.
“There’s this sense of unpreparedness for caregivers,” Dunnett said, adding that, with The Dwindling, she hopes to help remove the situation’s invisibility before it becomes a crisis.
It’s far from easy. Caregiving takes everything the caregiver has. But for Dunnett, it will always remain, “The hardest job I ever loved.”
This June I took up a challenge to flash write a little true story in under 250 words and in about an hour. The contest was put on by the Canada Writers in Victoria and, as always in that town, it drew a crowd of participants. Hey! I've got an honourable mention! It was good practice and even more, a way to pull back memories of that crazy time after the caregiving was over and before I decided I must write a book. Here's my flash truth.
“She looks familiar”, I thought, glancing her way.
It was fleeting because I needed to be somewhere else. This shrivelled old lady, wrapped in a rebozo against the Mexican morning’s chill, barred my way. She was not in a hurry.
“Buenas dias,” I said politely, peering at my watch and shrugging. Would she understand I had no time to talk?
I sniffed. That smell was just like Mom. On good day mornings in my months as Mom’s caregiver, the mix of cigarettes and coffee on her breath as I kissed her said she’d got out of bed, filled her percolator and lit a Rothmans or two. For now, Mom was not frozen in pain. It would be a good day.
And what about this senora’s back? It hunched in the same way Mom’s had. In the old days, kneading Mom’s hot spot signalled to me loud and clear if she was too sore for a planned outing. Ow! meant let me be.
Earlier that morning, I had been shocked to see my favourite picture of Mom ping onto my screensaver and get stuck there. Her head was thrown back in that signature belly laugh. Seeing it, my two year carapace of stoicism had split wide open and grief spilled out. I’d sobbed for hours. Now, looking at this old woman, I felt free.
She threw her head back, just as Mom did, and laughed that same deep throat joy. Suddenly, I knew.
“Sea feliz,” the crone rasped, backing away from me.
“OK Mom, if you say so. I will.”
I'm wondering. Has anyone reading this had an apparition from a dead parent?
This is not my own blog post. I am using it because it has struck me as so very important.
It comes from a website called The Unprepared Caregiver. The blog is written by Dr. Zachary White. @Zmwhite is an Assistant Professor of Communication. His academic research and teaching focus on how people manage meaning and communicate their experiences amidst high levels of ambiguity. Like caregiving!
His personal turning point was when he became a caregiver of his dying mother. Then he knew how his empathy and education would merge to the thinking we need. Heart thinking.
I became a follower of the work of Dr. White when, innocently I know, I was asked by someone looking at an article I had written, to "prove" that caregivers feel isolated. It was a kick in the stomach and a reminder to me of how much work there is to do... really!
Thanks, Dr. Zack!
Who wants to visit someone in a hospital? Too depressing, right? Who feels comfortable walking into the home of a friend or neighbor who is chronically ill? Too awkward, right? Who knows what to say or how to act around a work colleague whose preterm child just died? Too personal, right?
This is how modern life works. When things are going well—people are around. And when life becomes strange, fractured, interrupted, inexplicable, messy, uncertain—others willingness to engage silently evaporates. This doesn’t necessarily happen because people are bad or mean or even insincere (even though it often feels this way). So, why do we often feel like the people we expect to comfort us too often disappear into the background when we most need them?
We have a cultural care problem that too often leaves us unprepared to comfort those in need. Throughout our lives, we are taught (and rewarded) for celebrating ongoing and never-ending change.
In the world of commerce, we are constantly being told we need to buy this or get that so we can become something different or better.
In the workplace, we are expected to constantly improve and our performance evaluations are based on proving how much we’ve done, accomplished, and changed over the past year.
Even in our most intimate of relationships, we ask those nearest to us to constantly change . . .
“I love you but I need you to value your health more by losing weight.”
“I love you but you need to be more passionate if this is going to work out.”
“I know you work really hard, but it sure would be great if you made a little bit more money.”
Our culture tells us that acceptance is always synonymous with settling and resignation. So, is it any surprise that our preoccupation with constantly changing ourselves and others has become memorialized into common sense . . .
Engaging with others should always come with conditions.
Change is always possible and within our control.
Tomorrow will always be better than today.
Acceptance and satisfaction means settling and settling is a sign of failure.
Our collective faith in perpetual change gives us a place to focus our attention, dreams, concerns, worries, needs, and hopes. But an exclusive preoccupation with change also makes it difficult to know how to act or what to say or how to be when we are in the company of someone whose life situation calls forth acceptance—not change.
When we are asked to be with the person in front of us, not the past version of that person, not the future possibilities of that person, not the person you need him to be, or even the person you want her to be—but the person next to you, yes, that real person—is it any wonder too many of us become overwhelmed and rendered incapable of connecting?
What do I say? What can I say? What would I talk about? What can we possibly have in common? I don’t want to be rude, but what can this person do for me? Where will this conversation lead? Why would I connect with someone and risk getting close when there’s no way to predict what tomorrow will bring? I just want more, what would I have in common with someone who doesn’t want that?
Nowadays, genuine, deep care requires a corresponding type of rejection. In accepting the person nearest to us who is in need, we also have to reject the habit of looking through people to find a glimpse of our future, as if the people we are with are simply a means to something better. Accepting another person without conditions can be blinding because it asks us to be with another without the protection of talking about what isn’t happening, what should be happening, and what we want so desperately to happen.
When people ask you why you are a caregiver, or question how you have been able to care for a loved one for so long, or why you are such a good friend to others in their times of need, what they are really asking is how can you possibly engage another without the filter of change?
While most people are obsessed with persuading others to become and do something other than what they are now, they miss what we have trained ourselves to appreciate. On the other side of change is a frame of acceptance—a radical way of being with another that invites dimensions of deep connection. When reaching toward others, what would happen if we gave ourselves permission to connect without the expectation that the person in front of us need be anything other than who they are—now? This simple but profound orientation might just be the invitation to connection that reminds us—and them—that not everyone leaves when need rises up.
The event last night cost me a lot in time, gas, and cookies. In every way but cookies, it came up short. Or did it?
The occasion was a reading of my book, The Dwindling, A Daughter’s Caregiving Journey to the Edge of Life, at the largest library in my area. Looking out the window of the cavernous room we’d booked for the occasion, was the picture perfect harbourside of Nanaimo BC. Looking out over the audience, there was one wizened lady with a big sun hat, a backpack and sensible shoes.
Here’s the back story of this nightmare.
It began with an idea that my author friend Carollyne and I hatched over a glass of chardonnay, that we could both tell our stories with their tough truths, and sell lots of books. The author circuit would be more pleasant in collaboration with a friend. How could we lose? That plan came to fruition last night. But it did bear fruit?
We called our dog and pony show, Adventures in Elder Land. Her novel’s theme is elder abuse, one edge of a family relationship where the elder’s vulnerability is misused by greedy children. I’m on the other edge. We stepped up to support our vulnerable parents.
Over several hours, Carollyne and I figured how to meld such different approaches in different genres into one compelling event. We chose three issues bound to trigger response: the onset of dementia, family consensus, and the tug of war of control. Our powerpoint tossed the presentational ball back and forth between us. We practiced reading with feeling. I bought the juice and cookies and Carollyne got the technology working. Then, in the last half hour before show time, we fortified ourselves in the cafe across the street with a pinot noir, speculating about how many people going into the library were our audience. Wiping our lips of tell tale stains, we were ready.
Our audience of one browsed our books table without reaching for her wallet. The librarian said it was silly to introduce us to an audience so small. She offered excuses for the debacle. “The day is too beautiful. Children are just out of school. It is the start of the long weekend. The topic is depressing."
Feeling a little ridiculous, though perhaps not as uncomfortable as our audience, Carollyne stepped up to the mike. Her voice echoed like a grinding vacuum cleaner in an empty cathedral. I couldn’t manage such artifice, even though it was our pact to call this a dry run. Instead, I sat backwards on a chair, leaning onto my audience who introduced herself as Rosemary. Fifteen minutes into our hour she sighed, reached for another cookie, and told us to please stop the presentation. It was boring and a little bleak.
Munching contentedly, she began her critique. Too long. Too stiff. And most of all, we had no rapport with our audience. “I don’t want to hear about your book,” she said, “not at least until I know more about you.” Like Socrates she pushed me. Every answer I gave about my motivations for writing the book led to another question. Why did you do that? How did you feel? What was really going on inside? There was a sheen of sweat on my forehead and I felt the prickle in my arm pits. I stammered, all pretence of smooth talk gone. At last my carapace cracked. Who cared about my masters degree in community based research anyway,?Rosemary snorted. Piffle! It was my story about sitting with African women under the acacia tree, digging for their truth about hauling water, keeping healthy, learning to read that really interested her. That was the fact that would convince her why I was compelled so many years later to collect every artifact of my parent’s dwindling and try to make sense of it all. Rosemary assured me that if that was my true credential, people would relate to my book. But I must limit the readings to a paragraph not a page. “People have the attention span of a flea”, she said, slurping juice. Carollyne had the same grilling. “I sound like a piece of fluff,” she whined.
“No, you sound like you have a right to write this book,” Rosemary replied, full of confidence as she took three more three cookies and wrapped them in a paper towel “for later”. She slung her backpack onto her shoulder, straightened her hat, and said she had do go.
But before she left, she made the big reveal. Rosemary was a retired teacher. All her career she had forced truth out of pose in thousands of students. “You’ll get there eventually,” she said as she stood to go. “Keep at it.”
Our thanks for her coming came from the soul. This stranger had offered more than any book or course or coach in presentation. ever could. And we needed her on this maiden voyage. From the perspective of our plans to ply an audience with talk and refreshments and then sell books, this was a failure. From the perspective of learning, we were winners beyond any expectation.
I have two goals as an author of The Dwindling. One is to sell it. The other is to use it to engage about important ideas about caregiving at the edge of life. Two audiences have different expectations, and need different approaches. So thank you, uninvited teacher! You left a gift of edgy honesty that was worth far more than the cookies you cost.
“Just a quick note to say thank you for a great evening and for sharing your experience. It rang bells and stirred a desire to do something to build our community of support.”
An email this morning has got me on a roll. “To do something to build our community of support.” Yes! I’m seeing everywhere I go how sharing my story always seems to pull out a dozen others from those attics in caregiver’s minds, where they’ve been stashed gathering dust and maybe even guilt. But two extraordinary events this week in Calgary tell me it’s time for us all to pull together with what we know from being caregivers, and get cracking to make a better world.
The first setting is an indie bookstore, Owls Nest, in a strip mall and known by any Calgarian who loves books as one of the very best places to be. The crowd is mixed. My interview on CBC has pulled in all sorts of curious people. The place is packed, “more than twice as many people as we have ever seen at an event like this,” says Sarah the events mover and shaker for the store. Fortunately there’s enough wine. Unfortunately, there aren’t enough books. We’ll fix that of course. If not from the preferred Canadian source, then there is always Amazon.
But I digress. This is not about my reading. That just kicked off the discussion. A geriatrician passionately spoke about the most precious time of life, it’s very end. A spiritual time. A time of transformation for everyone lucky enough to be involved. A time to treat life tenderly and allow it to end the way it is meant to be. And support? The best comfort that medicine and love can offer. Her passion for the palliative approach to end of life care was palpable. Her hand was on her heart as she spoke. A pin dropping would have felt like an interruption.
Then several caregivers spoke in turn, an ethicist, many daughters of course. An old man struggled to his feet, turning to his listeners like a pro communicator, except that his voice trembled with emotion. His was the story of a beautiful death, his wife’s, and her choice to accept the help of a physician to end it at her chosen moment. Back and forth the pole positions went while the audience held its breath. Would this become a squirmy debate? It didn’t.
I offered my favourite image. A powerful eagle, soaring on two fully functioning wings having all the necessary flight feathers for strength and balance. One wing, that choice we are learning more about every day, called Medical Assistance in Dying. The other, that choice we need to develop. Palliative approaches for comfort care available to everyone who needs it regardless of where they live and why they are dying. Only three in ten Canadians have a hope of getting it now. That’s not right. Everyone nodded.
But this extraordinary discussion didn’t end in that agreement. “What about the people who do not have caregiver family?” someone asked, twisting her widow’s ring. Hard question. But out of the audience came the first threads of an answer. “We must relearn what we knew before, how to be community strong.”
Someone else recalled the crisis of the ice storm that knocked the infrastructural stuffing out the city of Ottawa for many days and was still remembered. Not for the crisis, but the opportunity. Only when the lights went off did neighbours start to know each other, share food and warmth, make friendships that lasted long after the heat came on again. That terrible time was the rediscovery of the long lost play book of really being in community.
To me the best bit of all came as dusk settled outside the Owls Nest. The speaker was a thirties-something woman, striking in her youthful beauty and smiling as she looked around at all of us, speaking loudly so overcome the whistles of our hearing aids. “Thank you!” she said. All eyebrows raised.
She explained what she meant. We were the first folks of a certain age she’d ever met who weren’t trembling in fear of the future or fist shaking at the failures of systems that weren’t helping them enough. We were embracing the idea of remaking community, “like the old days”. She was sure too that being there for each other would help us all navigate the the way ahead on that uncertain demographic journey, and clear away rocks in the road. “Thank you for what you are teaching me.”
It was a different crowd the next day, at the old sandstone building in South West Calgary that used to be a boarded up school. I arrived with my box of books and young guys in hard hats all raced to hold the door. Scaffolds were everywhere. This is C-Space, It came close to being demolished to make way for condos. Some visionary won the day to refit it into an incubator for a cultural shift. This is where the Calgary Association for Life Long Learning was setting up chairs for my talk about The Dwindling. I’m right on the money of CALL’s philosophy. Members have valuable knowledge gained from life experience and a diversity of talent to be shared, it’s website declares. I did my reading. We talked. Then I moved to the hall for more conversation and to sign some books.
It was noisy out there. Drums were throbbing and what sounded like a native honour song was being belted out at full voice just down the hall. Presently a kind faced native boy with glistening black hair down his back came to apologize for the ruckus. “Are we too loud?” he wondered. He explained that his group was preparing a theatre piece, rebooting the proud story of Treaty 7 First Nations. for a new generation. He was excited by it all, said he felt a new and inclusive era dawning with so many people ready at last to understand.
“Noisy? Not at all,” I said, handing him a copy of my book to read on the tour bus. “We are rebooting too…” I explained about the conversation we had just had, as one story led to many and we all realized our common cause. I told him we also had a problem with perception. “We’re called the greys in the What’s Ap world and hey, that tag makes us see ourselves as feeble too!” I reached for a pen to sign his copy. “That isn’t right!”
My elderly peers pitched in, realizing we were confirming our idea by explaining it to this fellow. We told him that we were seeing the beginning of our solution to the caregiving crisis up ahead, and thinking how to take it into our own hands. We might not have wizard tech skills or fingers still flying over our smart phones, but we know what a good community of care looks like.
“Pass the book around when you’re done,” I said, “I think we’re all on to the same idea.”
He looked at us, a gaggle of wrinkled women grinning at him, and there was just that hint of wrinkled brow to tell me he had a question. “What’s that idea?”
I smiled, passing back his signed copy. “It’s simple,” I said, “We are the solution we yearn for.”
I wonder if anyone is studying springtime caregiver burnout this year? I am. At least I’m mulling over two stories from caregivers I’ve heard recently. The same story.
“I’m just not able to manage any longer.” these caregivers tell me. Why, I wondered, would both be tearfully admitting they are at the edge of their tethers all of a sudden, when they’d been managing the care for years? It was a mystery.
It took me a while to deconstruct the events leading up to these caregiver collapse stories. But both offered the same key to the mystery. “Oh by the way” both said, “the personal care aides didn’t come as regularly as usual this winter.” Was there a connection between the support not showing up and the system unravelling?
On a West Coast known for its winter precipitation falling as rain…lots…all winter long…the winter of 2017 was different. Snow, not rain. Lots of snow and ice. Whereas in most families, the inconvenience of the weather events piling up meant forgoing the healthy walk for a day or two, or put off getting the groceries, or even a snow day for the kids, it was a different story for the caregivers. In their homes, a frail elderly person can’t just put life on hold. Family caregivers organize their day around the arrival of the home help to get the husband mom or dad out of bed, or into the bath or onto the toilet. This winter, far too often, the helpers desperately needed for the caregiver’s day to work, just didn’t show up.
“Roads are too icy. The staff didn’t come in today. Can you manage alone?”
“Tut tut, all that snow. Streets are not plowed. Can you manage alone?”
“Storm coming. Staff is being sent home early. We’re short handed. Can you manage alone?”
Caregivers just don’t like to create a fuss. There are reasons for that I think. One is that their self regard has been so ossified by years of their needs being second fiddle to the needs of the cared for “loved one,” that they just don’t have the insight into how dragged down they are feeling. Guilt plays a role too. Most caregivers just can’t bear the thought of not living up to the expectations all around them. But the biggest reason, I think, is fear. Making a stink about anything is risky in the caregiver’s world view. Being demanding can lead to a reputation no caregiver wants to have.
“That one is difficult to please.”
“She’s a complainer.”
“What a whiner that one!.”
Those all-important health authority staff are so powerful in the isolated and dependant world of the caregiver. If a frustrated caregiver ruffles feathers, it’s easy for the powers that be to just hold back the help that a little stretching would deliver. Or simply revert to the harsher side of the rules about who gets what. The way my mother put it was, “you catch more flies with honey,” but the opposite is true. If caregivers make too much of a stink, the flies fly.
Both of the caregivers admitted that they didn’t make a fuss when home help didn’t arrive. They cut the system slack. They said they could manage alone. They thought they were up to managing without help. They had to manage.
Mary’s back went out after 16 years of coping with one proviso, she would not lift her heavy husband. The daily routine revolved around the arrival of the hefty male care aide. Lyn’s 7 years of successfully managing a demented and sometimes aggressive husband has unravelled now, she thinks. Though still physically able, her quivering lip and glistening eyes as say it all.
These stories make me gnash my teeth. Would the fireman call in sick or say he couldn’t make it because it was snowing? Would the policeman say tough luck, the squad cars couldn’t manage on the ice? How about the ambulance paramedics? No. These fine folks would find a way to get to where they were needed. And why? Does it have to do with the pay grade? Or is it also the esprit de corps of the first responder, an assumption that they will find a way to get the job done. And home care workers? Why would they do the difficult job of getting to the job in the foul weather. It’s not in their pay scale to struggle this way. I get that. Most home care workers take home about the same money as the guy who cleans the swimming pool or cuts the grass.
These are just two stories. There is no conclusion to be drawn. There’s not even a trend to be found. But if we can suspect that all that snow this winter might have been climate change coming, something out of our control, can we also admit that changing the climate around caregivers, never taking them for granted or trivializing the challenge of their work, is something within our span of control?
We Canadians got some awful news this week. Or was it good news? No one is quite sure yet. The news comes from Statistics Canada, (our favourite institution for counting us that was darn near torpedoed by that cheapskate Prime Minister, Stephen Harper a few years ago. It told us that in 2016 we had more folks in that category that teens call “the greys” than those teens in the age category 14 and under. Yes, our country has tipped the balance from its self image of “young and vibrant…” to “old and wise…”
Yup. It’s true. The ranks of seniors grew 20 percent in just five years. In numbers I can get my head around, that’s 1000 new senior citizens a day starting to collect their pension, and able to put their feet up. Thats in comparison to the growth in the number of working people wishing they could head for their hammocks. That's a measly 5.4%. Of course at 65, a horde of Canadians start zipping around the world to find themselves in the third age. Most are on cruise ships now or in protected tour groups, not hitting the hostels in Hamburg, or wherever our newly adult noses pointed us way back when. What is the fastest growing demographic? Canadians needing lots of help to hold them up while they blow out 100 candles.
When I lose my comfortable dwindling plot in which I'm sure frail aging is for others but not me, I just have to look at my mother. As she lived her dream, working with Mother Teresa at about the same age I am now, she had no inkling of what lay just around the next bend of her journey. It wasn’t long after she put away her fanny pack and the secret wallet in her bra, that she started to dwindle. That's the thing. Dwindling happens whether we want it or not and before we know it.
Lucky Mom. She had her twins, who she called “Mommy’s little helpers” when we were seven and eventually, “nurse, nurse” as she pleaded for us to come to her aid at the brink. My identical twin Judi and I pinky swore that we would work together to keep both parents comfortable in their homes. And we did. For a decade in fact. Dad was less work. His tangled brain crushed his cognitive capacity, but he'd been smart. In his zoomer days he married a caregiver with privileges who was much younger, and knew the score.
With all that family caregiving, me as Daughter at a Distance but Judi on the front line as Daughter on Deck, we accepted that we had a part time gig that brought our family together and that was good. .Eventually though, it was a full time job for both of us and finally we couldn't handle it alone any more. I wrote a book about that, The Dwindling; A Daughter’s Caregiving Journey to the Edge of Life. But now, with this new data about greying Canada, I am starting to think of me.
I’m wondering who will take care of me as I swish down my slippery slope. An on-line life expectancy calculator assures me I’ll check out at 89, in 2038 to be precise, and that’s with even my generous admission of my red wine consumption. Mom died at 88. My youngest grandson will be turning 21 at my funeral. He might still be living at home. For sure, he’ll still be a big expense to his mom and dad. Of course, while he’s a toddler, preschooler, tween, and even insufferable teen, I’ll be there to read stories and explore Disneyland or help patch together a resume for his first job. But then the tables will turn, big time. The last thing my sandwich son’s marital dyad will need or be able to cope with will be me fading fast in their face. My husband, who hopes to be long gone, will be part of the problem too. The same widget as told me my fate says he’ll still be breathing at 88. My husband shudders at the thought.
Like it or not, my two grown kids will have to do something about me. Stick me in their basement? Get me in the line up for one of those Orwellian long term care centres that make me weep, advocating for me to win the lottery and score one within an hours drive and with a bathtub please? Careland is not a pretty place to visit in 2017, and the grey tsunami is still offshore.
Will I be able to take matters into my own hands without negating my life insurance or shaming my heirs? It’s my right now as a Canadians to seek Medical Assistance in Dying if I fit the still tight (so far) criteria. That will change and I will be facing a new duty, "Duty to die". That's why it is galling that It is still not my right to get palliative care. That’s the kind that doesn’t try to cure me any more but comforts me in every way medically possible, and makes sure my family gets support on their journey to my end and beyond. Sure, we’re better off than most in the world. Canada is 9th out of 40 mostly first world countries for its “quality of death”. We beat Uganda hands down. But the real deal palliative care that happens in a hospice? Well not a chance for 7 out of 10 of us who will just have to make do somehow and somewhere else when we dwindle.
Maybe our Minster of Health, Dr. Jane Phillpot is right. Let’s not panic, she says. We still have a few yards of runway to figure things out. But maybe it’s time for all of us to stop being squeamish about the fact of our coming dwindling and be active in forcing the change we want to see.
In 2008, my twin sister and I kidnapped our mother from her long term care centre (LTC). We’d been just barely coping with the place for months, but when she became palliative, things fell apart. We found the systems and staffing levels to be so inadequate that we felt taking her home to die, with all its challenges was a better option. “Kidnapping” was our twin tongue in cheek way of talking about that significant decision.
This week I got an opportunity to observe how another LTC manages palliative care. Has anything changed in almost a decade? I was a babysitting an infant while his mom was with her dying father. So for a week I walked the baby around the LTC between feedings, and observed it up close and personal Of course a sample of two is no more than an anecdote. Still, what is even more evident to me now is that the goal of “a good death” has a lot to do with luck.
James (not his real name) is dying in a facility that has both a LTC wing and a hospice. No one denied that James was at the very end of his life and he was receiving palliative care. But there is a rule in this province that there can be no transfers from an LTC setting to a hospice because, it is assumed, LTC’s can do the job of palliative care. Poor James, his wife and daughter too, had been bounced around the lower mainland in the month following his arrival in LTC, when home care was no longer feasible. When forms were being filled, his GP had deemed him not quite ready for palliative care, but things changed very fast for James at the end. But too few doctors have palliative care training to see the early signs of the end, and some simply don’t know what they don’t know. So James wound up as a new arrival in LTC, bottom of the senior seniority heap and in a double room as he stopped eating and drinking and began that long sleep leading to the end. No one thought this was ideal. But everyone felt disempowered to change the situation. There was a policy, that had been first delivered in guidelines perhaps, but quickly became rigid rules. It is a fact that patient centered care ideals struggle against resource limits. As my mother always said, “it is what it is.”
James does not appear to be suffering. He is in a semi coma. He gets regular anti nausea drugs to deal with his body’s reaction to shutting down. He has no apparent pain but if there is a change, doctors standing orders allow for whatever medication is needed to manage that or any other symptom. His daughter and his wife crowd in beside him in the tiny space he is allocated, trying to make the best of a difficult physical situation.
The sign on the hospice door warns everyone to keep their voices low. Palliative specialists know that people hovering at the end of life are bothered by noise. Fiercely protective of my infant charge, I advocate for this child and I to be allowed to use the hospice’s family room. The infant needs quiet to nap as much as his grandfather does. The best part of this room is its door that offers privacy. There is no such luxury for family visitors upstairs. Whether it is crying babies or discussions about the tender topic of the funeral, the only place upstairs is a lounge with a loud TV with people coming and going. I’m jealous on behalf of James when I peek into the hospice rooms. They are single rooms and spacious, and have tip-back lounge chairs that allow loved ones to grab a catnap during their long vigils.
Upstairs, the wife and daughter squirm in waiting room chairs by day, and by night James’s wife squeezes into a camp cot beside James’s bed. She brings a light from home. There is no place to shower or brush her teeth. Over several days, we are all worn down. I plead with the Director of Care for James to be transferred downstairs to the hospice. The answer is no. “The system is broken,” she says by way of explanation. Growling in my mind, I think, “but you are part of the system, lady!” but I say, “thank you anyway for your effort.”
As frustrated as I am, I also admit that this LTC is far superior to the one I encountered with my mother a decade ago. I note activities offered morning and afternoon, and know a recreation therapist must be on staff. Quality of life, not just preserving life, seems important here. In the eating area, residents can choose to be social or eat alone. The food looks fresh and smells good. The area stops smelling once meal time is over. There are no call bells clanging, clutters of diaper carts in the halls, or lingering smells ooze from the walls. It isn’t perfect though.
The LTC mixes the cognitively healthy with the residents whose brains are tangled and this creates challenges for everyone. Codes on doors and elevators make sure that no resident goes AWOL, and mug shots of the most insistent wanderers are hang in a line like Wanted Posters. But I like the purpose-built design of the facility, arranged in circles to that the bewildered can pace all day and never come to a wall. Yellow tapes across many doors are not meant to keep residents confined inside, as I first thought, but to ensure that wanderers do not stray into resident’s rooms uninvited.
For those near death though, there are serious deficits. James strains to hear his own soft music over the zumba beats pounding from the nearby common room as elders bend and stretch. The music is cranked up loud of course, along with every TV in the place, because everyone is assumed to be hard of hearing. In the afternoon, visitors crowd James’s room to hang out with his deaf roomie. They shout to be heard above each other and James becomes distressed. The aides shrug and wince. There is nothing they can do.
If the care team were trained to deliver palliative care, then perhaps the physical failings would feel less troublesome. But there seems to be a gap here. “It is in the care plan,” means an aide will still be obligated to haul James from his bed for a weekly shower, or shove puree into his mouth that stopped chewing or swallowing days before. There seems to be a critical disconnect that lasts too long. Pain meds are prescribed, but when James does indicate that he has pain, the nurse says that they must wait for half an hour to reassess before taking any action. “Just call if you need anything!” James’s daughter is told. But when James begins to gasp and she desperately calls for help, there is no response to the bell. Both mother and daughter feel like James has become low priority, and are afraid to leave even to get a cup of coffee.
Information is lacking. A pamphlet is offered but it has no answers to the questions that the daughter and wife now have. What is normal? How much longer? Are we doing the right thing? Staff who have no time to talk say, “We don’t know. We can’t predict.” I push the stroller through the rain to a cafe a mile away where there is wifi that allows me to google for answers not offered by LTC staff. Reassurance is the biggest need that family has, and it is a need not being met.
Dying is hard. Slow death is particularly difficult. James’s journey to the end took more than a week.There is anticipatory grief but also unnecessary suffering related to the clash between expectations of what palliative care should be like, and what actually happens in this LTC.
I conclude there is plenty of work to do to reach the goal of excellent palliative care, delivered anywhere. To make progress, I think, the gaps must be identified and acknowledged. It is not acceptable to conclude, like the Director of Care told me, “The system is broken,” or like my mother said, “it is what it is.”
As each of my sundowns walking the baby around facility approached, several residents with dementia began their especially tumultuous confusion. One screamed over and over, with growing desperation. “Police! Call the police. Someone call the police.” The staff and other residents ignored her. Obviously, she was making no sense.
But was she actually making even a little bit of sense? After all, calling for help from a higher authority when something needs attention is what people should do, even those with a tangled brain.
Maybe we all need to raise a ruckus.
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
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