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.
                                                                 Sea Feliz
“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. 
“Be  happy?” 
 I grinned. 
“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!​
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​​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.
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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."

We began. 
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.  
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We did. 
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. ​

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.

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