Bringing It Home

by Tilda Shalof

  The plane gains momentum and lifts up to the sky. I look down at the patchwork of fields and farmhouses, isolated and remote from each other, and the wide expanses of forest and wild bush in between and all around. The ground below recedes and the houses and trees become smaller. Suddenly, I look down and see – I spot the antlers first, lumbering through trees – it’s the size of a plastic toy animal. Yes, I’m sure – it’s a moose! My moose.

  BACK AT THE RANCH

  HOME SWEET HOME. It’s great to be back with my husband and kids. They’re happy and flourishing and didn’t seem to miss me too much (was my absence even noticed?), so no worries there. I’ve been away for only a few weeks, but after going so many places, meeting so many people, and hearing so many stories, it feels much longer. The stories have changed me. I’m not the same person, or the same nurse. But there’s no time to reflect on that because a day after I arrive, I receive news that’s first shocking, then disappointing.

  First, the shocking part. Judith called. I went into my office and closed the door so there’d be no noise or distractions. I need to have my wits about me when I speak to Judith. Just as I’m about to ask where she is – Moscow? Rio de Janeiro? – she gets to the reason for her call.

  “I’ve resigned as chief of VON. I’m leaving the organization.”

  “What will happen to VON?” What’s happening with my trip?

  “There are many capable people in this organization, as you know. I will stay on in an emeritus role and VON will manage just fine without me.”

  “Why are you leaving?”

  “I want to focus on my campaign for president of the International Council of Nurses.”

  Yes, it makes sense. She once told me she never stays in any position more than a few years, sufficient time for her to make her unique contribution. Then it’s time to move on to the next challenge. But what about the fate of my epic odyssey? I’m still looking forward to getting out west to British Columbia, to Alberta, to Newfoundland and, of course, Thunder Bay. But next comes the disappointing news. VON is in crisis. This venerable institution has fallen on hard times financially. Cutbacks in programs and staff layoffs are in the works. Until further notice, there is a freeze on unnecessary expenses and a travel ban. As for me, my trip is to be drastically curtailed to the few local, remaining visits that have already been arranged. The last leg of my journey will be a stripped-down roadshow with only a few more stops.

  That’s it? No Rockies or Prairies? No Thunder Bay? And, of course, New York was taken.

  “Go with the flow,” my husband says, and, of course, he’s right.

  A pile of letters from Audrey accumulated while I was away. She’s stepped it up. They used to arrive about once a month, then once a week, but six have arrived in the past two weeks while I’ve been gone. I wrote her one letter before I left for Nova Scotia, but long ago gave up trying to respond to each one. Who can keep up with Audrey? Even my kids recognize the familiar, primly embellished script with its precise return to the line, as if a ruler were placed underneath, and, of course, the daisies, cupcakes, clowns, sea horses, balloons, and dragons.

  I settle in with a cup of tea on the couch to read.

  Thank you for your exhilarating, but undated note.… Why haven’t you provided answers to my most pressing questions?

  1. Did you work on both Christmas and New Year’s Day?

  2. When will you send me a picture of you in the sweater Nurse Stephanie knitted for you?

  … I received a special gift for Christmas – pneumonia. My blood sugar soared tragically and Hilda suspected I was harbouring an infection. They ambulanced me off to the hospital. I was very happy and peaceful knowing that I was finally going, this time for good. How does one cope gracefully with the oxygen mask while still keeping up conversation and eating chocolate for energy? An antibiotic was prescribed and bed rest, too, but what I need is eternal rest. They used to call pneumonia the “old person’s friend.” But my earthly friends took on the Pneumonia Project and rescued me. I’m back home now but in a devastatingly debilitated state.

  My back is wickedly weak and the left leg attached to it is slowing down. But I’m a good patient and don’t need much care at all, just water and feeding like a hardy house plant.

  … Yes, they recycled me, gave me a new transmission and now I’m back in the garage – I mean at home. I’m still alive at everyone’s request. At least, I am trying to do my best.

  My caregivers have installed a raised toilet seat to assist me in those matters. It is cumbersome. I miss my old one. Perhaps you’ll come and give me a demo how to work it?

  It is January 6th, exactly one month to my party. I will try to hang on, but because it is wise, I plan for my demise. (After the party.) I expect you to be there. Don’t let me down.

  I get stationery, a pen, a stamp, and an envelope to write back. Question: Who will inherit your sticker collection?

  Back at the ranch.

  I never realized the extent to which the hospital is not a cheery place. As I walked in this morning at the start of a twelve-hour day shift, I noticed, as if seeing for the first time, that there are a lot of tense, grim people around here, and I’m not talking about the patients. As for me, I’m back in the groove, in my element. Ahh, the symphony of beeps, buzzes, the ringing of alarms, the overhead staticky announcements, the rushing high-heeled footsteps, phones ringing at the nursing station, the nerve-jangling hustle and bustle – it’s music to my ears. I’d been hoping for an exciting day and it looks promising. Someone is crashing (the arrest cart has just been wheeled in), there’s someone down in the ER who needs an ICU bed but we’re full so he’ll have to be “bed-spaced” to the cardiovascular ICU for now. Three patients are on ECLS, each requiring two nurses assigned to their care. There’s a young woman admitted overnight with viral myocarditis who’s in florid septic shock and respiratory failure. Another patient is in hepatic failure and is deeply unresponsive from an encephalopathic coma. His family sits by his bed, guiltily hoping for an inevitable tragedy that might bring a liver transplant to save their son’s life. An eighty-three-year-old man was in the ER for six hours overnight until he was stable enough to be moved to the ICU. He has lung cancer and massive pleural effusions and abscesses on his lungs. “Please try to save his life,” the family implored. The team did that, but unfortunately he died in the elevator on the way to the ICU. (This was awful for the family, but it does mean that at least there will be a spot for the bed-spaced patient in CV ICU.)

  “Technically, we just admitted a dead man,” was the night nurse’s rueful comment.

  A fifty-year-old man has a respiratory infection and thanks to the tragic lessons learned from SARS the patient’s nurse and doctor didn’t miss a beat. They closed the doors, put on the special, fitted masks, gowns, gloves, and eye shields, turned on the reverse air filter system, and taped “Airborne Isolation” signs outside his room.

  In short – an ordinary ICU day.

  At lunch, I catch up on the news. A week ago Richard Thornton-Sharp was admitted to the ICU in respiratory failure. He’s back home, but now needs around-the-clock care. His husband, Jim, called the ICU to tell us that Richard stays in bed now, too weak to even sit up. Jim has taken a leave of absence from his job to take care of Richard full-time. With home care assistance, Richard is now receiving palliative care.

  I wonder if I’ll see him again.

  Later in the afternoon, when the daily, predictable hypoglycemic slump hits and our stress levels peak, each of us finds a moment to dart into our manager Denise’s office (where the door is always open) and dip into the glass bowl of chocolates she keeps on her desk. Here’s an interesting research question: Is there a correlation between our stress levels and the chocolate level in the jar? I hypothesize an indirect correlation; as one goes up, the other goes down. Mmmmmm. Perhaps I can get a government grant – or a chocolate manufacturer – to subsidize this worthwhile investigation.

  It’s great to be back, but a
s my shift comes to an end, for the first time I wonder if “excitement” might be overrated. Is “excitement” the essential ingredient for a meaningful career, for work that matters? Is constant action, high-stakes drama, adrenaline rushes, et al. – and the stress we complain about, but, I suspect, actually relish, even crave – what it takes to make a job satisfying?

  Now the ICU seems a smaller, more contained world than my new, expansive one. I’m looking forward to getting back on the road, to the world beyond the hospital. Just as I love my hospital world, I’ve grown to love this other world. I’m discovering that helping people live their lives can be as exciting as saving those lives – not to mention all the fun of being on the road as a roving nurse-reporter. In fact, I’m leaving tomorrow for Ottawa, to see what VON has to show me there. Just when I think I’ve seen all there is, they surprise me with something new.

  THE FAR, DARK SIDE

  STATISTICS USUALLY MAKE my eyes glaze over and my mind go blank, but these ones make me sit up and take notice, perhaps because I can now visualize what they actually look like.

  “The unpaid labour of family caregivers saves our health care system twenty-five billion dollars a year.” “Over three million Canadians provide informal caregiving to a family member.… Twelve per cent of children or teenagers provide significant care to family members.”

  Child caregivers? Say it isn’t so.

  Full disclosure: I was a child caregiver to my mother, but I didn’t always carry out my role with a skip in my step and a song in my heart. So, I guess I have an interest in the topic.

  In the Ottawa office of Bonnie Schroeder, director of caregiving for VON Canada, a poster says, “Are you a caregiver? You are if you think you are.” Another reads, “Are you a caregiver? Chances are you are. Or will be. At some point, we are all called upon to be caregivers.” That’s true, but not everyone is up for the challenge. What I do know is that everyone has somebody they’re worried about.

  I know some incredible family caregivers. My close friend Jasna cares for her profoundly developmentally delayed twenty-year-old son at home on her days off from work. Together with her husband, Jack, and their other two children, they dress and feed Alex, and medicate him when he has one of many daily seizures.

  “You do what you gotta do,” Jasna always says, brushing off my expressions of admiration for the way her family deals with their situation.

  You do what you gotta do.

  I suppose that’s true, but not everyone does it as wholeheartedly or as graciously as the caregivers I’ve met on this journey. Sure, they have their bad days, but mostly they hunker down – with few complaints, endless patience, and little self-pity. Their nobility appears to be effortless. I admire these caregivers but I understand and identify more with those who struggle with the role. For me, it’s not difficult to imagine how a well-meaning caregiver could become a frustrated, resentful, neglectful – or even abusive – caregiver. As for someone forced into the role? I have great sympathy; it’s hard enough to be a good caregiver when you take on the role willingly. I’m hoping that Bonnie will speak candidly about this dark side of caregiving – not just the blessings, but its burdens, too.

  She doesn’t disappoint.

  “ ‘Overwhelmed’ is the word you constantly hear,” Bonnie says. She gives me a folder full of research articles about the higher incidence of impaired immune systems, depression, infectious diseases, and premature aging. One study from the Faculty of Nursing at the University of Western Ontario found that 40 per cent of nurses are double-duty caregivers. This is the highest percentage across all professions. These nurses are fulfilling both professional and family caregiving roles simultaneously, around the clock, shift after shift, without a break.

  “Caregivers feel invisible. They are rarely asked how they are doing. The focus is always on the patient. I always say if they’ve taken their pills, are clean, dressed, and made it to an appointment, it’s because of caregivers. But many are pushed to the brink and end up compromising their own health and jeopardizing their jobs, too.”

  Many people are not prepared for the hands-on work of caregiving. Bonnie tells about a man who cared for his wife after a stroke. When a home care worker visited, she noticed bruises on her neck and brought it to the husband’s attention. “She had a poo,” the husband said in explanation. “What’s wrong with that?” she asked. “On the carpet,” he said, looking remorseful. The home care worker reported the incident, which led to providing respite and support for the husband. Maybe those measures ultimately saved the woman’s life.

  Pee and poo are a big deal; for many, they are a game changer. “I’d kept them at home until that,” I’ve heard caregivers say. Incontinence draws a line in the sand. “When it happens, you’re never ready,” the son of an ICU patient once told me. “I can cope with anything but that.”

  We’re unused to tending the human body, yet we accept handling our dog’s excrement and have little trouble with babies’ diapers. What happens to make us become repulsed, squeamish, even claim a constitutional inability to handle the body’s messes? Love can only get you so far.

  According to Bonnie, “respite” is their number-one need. A husband who came to Bonnie in despair said he found himself getting aggressive toward his wife, who had Alzheimer’s. When she started going to an adult day program, he finally got a break. He’s taken up golf again, having lunch with friends. “It gave me back my life,” he said. The benefits to the wife were significant, too. “I’ve seen it with my own eyes: ADPs save lives,” Bonnie says.

  It’s what we say about hospital care, but now I realize that both claims are correct.

  Bonnie invites me for lunch, but I excuse myself. I have other plans. I want to take a walk, stroll around downtown Ottawa. See the Rideau Canal, the Parliament Buildings, but first, I have a stop to make. It’s only a few blocks from the VON office to Elgin Street where Perfect Books is located. Hopefully, the owner, Jim Sherman, will be there.

  The sign over the door says, “A Proudly Canadian … Fiercely Independent Bookstore.” It’s one of the few small, independent bookstores left in the world. They’re a dying breed – as are fanatic readers like Jim and me. Inside the shop, classical music is playing softly and the patrons are whispering as if the place is holy, except what’s worshipped here are the words, ideas, and stories contained in these pages. Jim stocks the latest bestsellers alongside hand-picked, lesser-known titles from up-and-coming writers, on smooth pine shelves. Best of all, Jim is here to talk books. He’s been my bookseller at conferences where I was the speaker, and in his store, he always keeps copies of A Nurse’s Story in stock.

  We stand at the front display window where sunlight pours in, warming the store on this frigid day, and we launch right in to discussing our mixed feelings about the new Jonathan Franzen, to going into raptures over Alice Munro, as always, and to anticipating the soon-to-be-released Vincent Lam. We compare “To Read” lists, lament classics we still haven’t gotten around to, and share book jokes, like the one about the customer who came into the store recently and innocently asked Jim, “Do you have any books by Jane Eyre?”

  Something outside in front of the store catches Jim’s eye because he stops talking mid-book to peer out the window. He shields his eyes from the bright sun and looks perturbed. I look out, too, to see what he sees. But there’s nothing there except for a pile of garbage bags, old rags, and cardboard boxes strewn about on the sidewalk. I hadn’t noticed it there when I walked into the store a few minutes ago, but it’s hard to miss now.

  Jim raps on the window. Suddenly, the heap of trash moves. I look closer. Horrified, I see that there’s a human being under there. He sits up and looks drowsy, like he’s been awakened. He holds on to an empty beer bottle. A bedraggled, grimy person has set up base camp and taken shelter under the awning of Perfect Books. Clearly concerned, Jim calls a nearby shelter to have someone come and escort him away.

  “Not a customer, I presume?” I quip.

>   “No, but he is a regular. He likes this spot outside my door because there’s a sewer grate right there that he lies on for the warmth on a cold day like this.”

  I wonder why he can’t just stay there, if it’s warm and protected. Where is he supposed to go if he doesn’t have a home? But I also see it from Jim’s point of view. This person’s shocking appearance might deter customers from entering the shop, and we all know bookstores need all the customers they can get to survive.

  “Bad for business, I guess?” I say.

  “Yes, but lying there isn’t good for him, either. It’s no way for a human being to live. It’s freezing out there and he needs a meal and a place to stay tonight.”

  Probably not just tonight. Likely tomorrow night, too.

  So many times I’ve looked away and walked on by. It’s getting harder to do that now.

  Later in the afternoon, I return to the office ready to meet a VON client that Bonnie has invited to talk with me. Georgina McPhee cared for her husband, who died last year. She’s fifty now, but when she and her husband were in their mid-forties, he developed early-onset dementia, and his decline was fast and drastic.

  Georgina is a slight sad-looking woman, attractive with no makeup or jewellery, in a ballerina chignon, loose tendrils at the sides of her face, wearing a long velvet skirt and a romantic shawl around her shoulders. She is ready to share her experience and does so with unflinching honesty.

  “It started off as mild confusion, but soon Allan couldn’t follow TV or keep up a conversation. Here he was, a brilliant university professor in the prime of his life, and almost overnight, he became a helpless, needy child. He had always been meticulous about his appearance, but soon became slovenly, not brushing his teeth or showering. He kept asking questions over and over. ‘Why is there a light in the doorbell? Why is there a light in the car? Make it stop. Make it stop.’ ”