Bringing It Home

by Tilda Shalof

  With her impressive academic credentials, scientific chops, and political savvy, Judith is working toward that vision. Bedside nursing, management, research, teaching, policy development, multiple university degrees (earned and honorary), awards, papers published – she’s done many things. My career has been dedicated to one: working in the intensive care unit and writing about it. (That’s two things, but who’s counting?)

  I asked her, “What’s your secret to accomplishing so much?”

  She smiled serenely. “The Sabbath. It recharges me.”

  So, a day of rest makes her more productive, not less. Interesting.

  “But how did you manage to do it all – a master’s degree, then a Ph.D., have a high-powered career, manage a home, raise a family of three, and be a grandmother to sixteen?”

  “I’m not going to tell you it’s easy. It’s not. The juggling is constant. But if you have a true partner, it’s possible.”

  I wondered where her husband was. “He’s still at shul,” she said. “Shabbes is almost over.” She used the old-school, Yiddish terms for synagogue and Sabbath.

  Then she asked me something that took me by surprise. “How would you like to write a book about home care and VON?”

  “No, thank you,” I answered politely. “I don’t know much about home care.”

  That was a lie. I know nothing about home care. I write about what I know, what I’m passionate about. Like a lot of people, Judith must think I can cobble together a book out of thin air, whip one up, easy-peasy. (It’s like the joke about the neurosurgeon and the author. They’re at a party and the neurosurgeon says to the author that he’d like to write a book, so the author says he’d like to do some neurosurgery.)

  “You could learn about home care,” Judith says, responding to my objection. “What if I were to send you on a trip across the country to visit VON sites, see our programs in action, meet staff, volunteers, and, most of all, our clients?”

  Clients. Oh, sure. They taught us that term in nursing school. It’s an attempt to give the impression we’re all on equal footing, but no one believes that and no one ever actually uses the term client, certainly not in the hospital. And, take it from me, I’ve been on the other side, the receiving end of hospital care, and when you are lying in that bed, you are a patient.

  “Isn’t home care driving around, checking up on people in their homes?”

  “What VON does is much more than that.” Briefly, she looked at me askance, like Maybe I’m wrong about you. “Yes, home care is caring for people in their homes, but it’s also about preventing illness, teaching people about their health and how to manage chronic diseases, and much more. It’s about primary care and helping people stay independent and keeping them out of institutions. It’s for all ages and takes place in a house, or a community centre, school, church, even on a street corner or in a back alley crack house. It involves nurses, doctors, volunteers, family caregivers, home care workers, case managers, social workers, nurse practitioners, and others.”

  I looked at the brochure she’d given me. “VON – Health Starts at Home.” Doesn’t health start and end in the hospital? That’s how it’s always seemed to me.

  We sat quietly. I looked at my watch and drained my coffee cup. I had to get going soon. Night shift starts precisely at 1915 hours and it’s frowned upon to be late, as well as inconsiderate to the tired day shift nurse who’s waiting to give the handover report and go home. But as I got up to leave, Judith asked me another question. This one took me aback even more than her first. It surprised, but then rankled, me.

  “Why aren’t there more nurse leaders? Why aren’t more nurses involved in the bigger issues of our profession, like policy development or health care reform? Why don’t nurses speak up about important issues, or engage in social activism or political advocacy?”

  Easy for you to say. When’s the last time you worked a night shift or a long weekend? When’s the last time you changed a dressing, gave a bed bath, or ran to a Code Blue? You’re just another out-of-touch academic in your ivory tower. How disappointing!

  I must have looked as perplexed as I felt, because she explained further.

  “Yes, there are nurses on Parliament Hill lobbying to implement policy changes and one or two running as political candidates. Others speak out against homelessness and poverty. There are nurses who work in clinics for refugees who have no health care coverage. These are wonderful contributions, but why are they so few in number and the rest remain silent? We now have the most educated cohort of nurses in history, yet so few are in corporate management or global leadership. Nurses will continue to be left behind.”

  I felt myself getting annoyed with her grandiose questions. “What nurse has the time or the energy for any of that? Do you have any idea of a nurse’s workload? The responsibilities? Patient care takes everything out of us. Why isn’t it enough to be a front-line nurse, giving patient care?” Her questions irked me. I was steamed up and let it rip. “Most of us are already stretched to the limit between shift work, caring for our patients, and our families at home. Do you have any idea how many nurses are also caring for a family member at home? Are we supposed to take care of the world? Why don’t academics like you, with all of your university degrees, know anything about real, hands-on nursing?” I picked up my knapsack from the floor. If I leave now, I’ll make it to work on time.

  “There are three kinds of nurses,” Judith said evenly, continuing with her lecture, taking no notice of my ruffled feathers. “The first type of nurse takes care of patients. For this nurse, patient care is enough. The second type of nurse is a researcher or an educator, but disconnected from front-line realities. This nurse may be involved in charitable causes or political activism, but separates that work from their identity as a nurse. They get nursing amnesia and forget that they are nurses.”

  “I’m the first type,” I snapped. “I like taking care of patients. It’s why I went into nursing and why I stay.” I walked to the door before she could expound on the third type.

  Judith accompanied me to the door. “I’m leaving for Geneva, Switzerland, tomorrow for a meeting at the World Health Organization. In two weeks when I get back, VON will be holding our annual general meeting in Windsor, Ontario. Perhaps you could join us at the AGM, where you can meet some of the key people at VON.”

  And who might they be? Florence Nightingale, the Lady with the Lamp? Clara Barton of the Red Cross? Maybe the ghost of Lady Ishbel Aberdeen, founder of VON in 1897, according to the brochure which I’d already crumpled into my knapsack and planned to toss out when I got to work.

  “Think it over,” she continued, now smiling, our heated debate forgotten. “Wait until after you experience the AGM to decide your answer.”

  “I’ll let you know,” I said and turned away. I already knew my answer.

  I stepped out onto the porch. The sky was dark and three stars twinkled above. The Sabbath was over. A trim, handsome man in a suit carrying a folded white-and-blue-striped prayer shawl in a clear bag – it must be Judith’s husband – was coming up the stairs, arriving home. “Have a good week,” he said to me.

  As I drove to work, all I could think of was how to brush off Judith’s offer. Maybe she’ll drop it after that testy exchange? Surely she sees how far apart we are? She must have sensed my lukewarm reaction to her proposal. How could I even think about leaving the hospital, even temporarily? It’s what I know best. It’s my home.

  For the past thirty years, I have been a hospital nurse, most of that time in this same Medical-Surgical Intensive Care Unit of the Toronto General Hospital. I’ve worked hard to master the ICU, acquire the skills, stay on top of my game, and keep my edge. Over the years, I’d dabbled in a few other things – floor nursing and a few shifts in the emergency department. I’d made a half-hearted attempt at graduate school to do a master’s degree in nursing, but I dropped out after the first semester. Oh, and nine summers of camp nursing – that was a fun adventure. But after each b
old foray away from the ICU, I returned to my comfort zone. Let’s face it: I’m a lifer, addicted to the rush, the human dramas, the controlled chaos, even the noise, mess, and pace. I love supporting families through a crisis. I thrive on the danger of septic shock, the ooziness of end-stage liver disease, the complexity of rare autoimmune disorders – not to mention “everyday” respiratory failure and lethal cardiac arrhythmias. Even after all these years, I still find critical care fascinating. Where I work, we are doing fascinating research and implementing cutting-edge technology, such as incubating stem cells and growing new organs in the laboratory. We are caring for patients on extracorporeal life support (ECLS) to oxygenate blood and remove carbon dioxide outside of a person’s body.

  My break is over. Time to get back to work. I leave the calm of the Wellness Room and re-enter the fray. Tamara’s patient is a young woman on an artificial lung device that will hopefully bridge her over until she might receive a life-saving transplant. Kate is caring for an elderly man in acute respiratory distress syndrome who’s on the high-speed oscillating ventilator and may have to be placed on ECLS. I see Jasna titrating down the inotropes her patient is on for low blood pressure, so he must be improving. Janet, who’s on the mobile ICU dream team, and had been roaming the floors, scouting for patients in distress, is now rushing into the ICU with a patient who’s gone into florid pulmonary edema and needs intubation, stat. (I better get in there and help her.)

  At 0520 hours my patient returns from the OR to the ICU, this time with a smaller and more relaxed caravan in tow. The surgery went well. His blood pressure is 118 over 78, normal sinus rhythm at 72 per minute. Only two IV infusions running now. Urine is flowing. It’s time to empty drains, zero pumps, tally up ins and outs, finish my charting, and organize my thoughts in order to give a coherent report to the day nurse.

  What could be better than this? More rewarding? More exciting? When Judith gets back in town, I’ll call her to tell her my unequivocal answer: No.

  FIFTY SHADES OF NURSING

  IN THE MORNING after last night’s shift, before driving home and toddling off to bed, I attend a meeting of the Bagel Club. There are four of us today: me (aka Tillie), Janet (aka “the Grand Pooh-Bah”), Jasna (aka “Jazzy”), and Stephanie (“Shorty”). As we sit reviewing the night, eating (bagels, what else?), and knitting colourful socks (Janet calls it “sockology”), I tell them about Judith’s offer of cross-country travel and a writing assignment.

  “You’re not seriously thinking of doing it, are you?” Janet looks at me dubiously. Two more pairs of dubious eyes look at me over their knitting needles.

  “Maybe. I’m not sure.” I prevaricate, not even sure why I am now wavering. Last night, I was so certain. Aside from Judith’s proposal, I wanted to talk with them about the questions she’d asked me just before I left. I looked around the circular table at my friends. They are all outstanding nurses who also do the yeoman’s share of caregiving in their families – one for a profoundly developmentally delayed son who requires twenty-four-hours-a-day supervision, another as a single mother raising teenagers on her own, and so on. In addition to full-time hospital work and at-home responsibilities, they’re each involved in volunteering and fundraising for causes such as cancer research and autism treatment. I think of others I know, like Muriel, who also works full-time and cares for her aged father-in-law, who lives in their home. There’s Omar, who has put his travel plans on hold to stay and care for his vibrant but frail ninety-year-old mother. Wendy’s father just had major surgery and she’s taken time off work to care for him. And others. Most of us have someone we’re worried about.

  As soon as I get home, I dash off an email.

  Dear Judith,

  Thank you for our visit. I’ve been thinking over the question you raised about why more front-line nurses don’t get involved in professional issues, policy development, politics, etc. Frankly, I am amazed at those who do, given the demands of a nursing career. There’s a huge separation between the practitioners of our profession and nursing scholars. Perhaps more academics need to learn about front-line nursing. After all, isn’t research supposed to be about improving patient care?? Doesn’t it start there? I invite you to a meeting of the Bagel Club to learn about the reality of working nurses’ lives and concerns.

  I press Send. Within minutes I receive a reply.

  Wow. This is the BEST email I’ve had in ages. Your reflections help me understand so much. Right now, I am flying to Thunder Bay to visit health clinics in First Nations reserves, then back to the University of Toronto. Later in the week, I’ll be in Ottawa, meeting the minister of health and your words will be foremost in my mind. Thank you for the invitation to your group. Judith.

  I write back: Do you knit?

  I have a talent – some call it a gift – for sleeping. After a few hours of slumber, I awake in the afternoon like a bear emerging from hibernation, refreshed and ready for spring. After rest and reconsideration, last night’s adamant no has morphed into a tentative maybe. But it’s not just sleep that’s brought about my change of heart; it has something to do with catching sight of Dr. Margaret Herridge this morning after last night’s shift. Just as I was stumbling bleary-eyed out of the hospital, I saw her striding briskly in, coffee cup in hand, energetic and eager to get at her day. We waved, but didn’t stop to chat as we usually do. (No energy for me, no time for her.) Margaret is one of the medical directors of our ICU, a world-renowned researcher and a wise and caring doctor. Seeing Margaret reminded me that for the past ten years, she’s been studying the aftermath of critical illness. She follows former ICU patients, visiting them at home to learn about their recovery.

  When I arrived home, just before going to bed, I turned on the computer to watch a YouTube video of Margaret discussing her research findings. She’s wearing a white lab coat over an elegant suit. There’s her classically beautiful face looking genuinely concerned as she speaks to the camera.

  “We previously assumed that ICU survivors got back to normal and returned to their regular lives. However, that is not the case.” Margaret goes on to describe the ongoing physical and psychological problems of ICU survivors and the enormous burden of caregiving shouldered by overextended, exhausted family members.

  Yes, I’d also always assumed it was happily-ever-after for our patients at home. But now that I think of it, even one of our most famous lung transplant patients, Hélène Campbell (whose organ donor awareness campaign gained the support of Justin Bieber and Ellen DeGeneres), took more than a year to recover at home, and still has ongoing health issues.

  “Five years after surviving a critical illness, many patients remain physically fragile and suffer post-traumatic stress disorder [PTSD] from an ICU stay,” Margaret reports on the video.

  When I ask her about it a few days later after team rounds, during a day shift in the ICU, she tells me more. “It’s a growing public health issue. We invest so much in critically ill patients in the hospital, but almost nothing when they’re at home recovering.” She suggests I visit a few of our past ICU patients to see for myself.

  Richard immediately springs to mind. I don’t usually stay in touch with patients (some nurses develop ongoing friendships, including visits, Facebook, et cetera), but Richard-Thornton Sharp and his husband, Jim Harris, were an exception for many of us. They were such a warm and loving couple, and their kindness extended to the entire staff. They got to know us as individuals, and the affectionate feelings were mutual. For the first few weeks after Richard went home, a few of the ICU nurses and respiratory therapists took turns staying overnight to ease the transition. Unfortunately, he has had to be readmitted to the ICU a few times due to recurring lung infections.

  In their east-end townhouse, I sit with Richard in his book-, art-, and music-filled office. Jim is at work but will be home soon. Richard reminds me how his medical problem started. He developed a thymus gland tumour that crept into his chest, encroached into his lungs, and threatened to obstruct his airway
.

  “One day I passed out in the grocery store.” He pauses to breathe. “I fell on top of a cheese display. Fortunately, it broke my fall.” He indraws a quick breath.

  “At least it was soft.” I finish the joke for him because he doesn’t have the energy to do so himself. He nods in thanks.

  Then came surgery, multiple complications, and a year-long ICU stay filled with gradual, tedious progress and frequent drastic setbacks. There were even periods of time when Richard was awake and walking, but still critically ill. (How is that possible, you ask? Trust me. We see it all the time.) A tall, majestically handsome man who was once a Shakespearean actor, Richard is now frail and weak, but still nicely dressed in a crisp blue-striped shirt and casual pants. His hands tremble and his voice wavers as he pours me a cup of tea.

  “Wearing clothes marked a return from my patient costume back to my civilian uniform, but I hardly have the strength to button my shirts. In the hospital, I worked so hard with Vince, the ICU physiotherapist who knew just how to motivate me. Vince gave me the confidence that I could get better, even run a hundred miles. I’ve lost all of that now.”

  Jim arrives home and greets me with a bear hug, just like the ones he gave all of us during his daily visits to Richard in the ICU. I try to hide my shock at Jim’s haggard appearance. Once robust and jovial, Jim is now a shadow of his former self, gaunt and tense-looking. He rakes his hand through his hair in frustration. “I love Richard, but it’s going to ruin our marriage if I have to be his full-time caregiver. We get a few hours a week of home care, but I’m on duty all the rest of the time and every night.”