Bringing It Home

by Tilda Shalof

  “Come visit us in Thunder Bay,” Joan Wekner invites me. She’s the nurse manager of the vast Northern Ontario region, plus the prairie provinces of Manitoba and Saskatchewan. I take an immediate liking to Joan and her funky clothes, skull ring, and purple highlights, like mine.

  “I’ve always wanted to go to Thunder Bay,” I tell her. (I’ve had a secret fascination with Thunder Bay ever since an old American boyfriend once asked me how the city got its name. I said, “New York was taken,” and it became a private joke that always made us break out in giggles.)

  “Working together with the Ministry of Natural Resources, we provide fire line nursing,” Joan explained. “When there’s a forest fire, we set up base camp – it could be a hotel room, a trailer, or a tent – and treat injuries or stabilize and transfer out. We teach bear safety and conduct stress debriefing sessions. It’s not for every nurse. We had one gal from Toronto.” She stops for a chuckle. “She complained there was no place to plug in her blow dryer. You have to know what you’re getting into, and it helps if you like being out in the bush. I’ll arrange for you to go out with Joanna on her rounds. She’s sixty-five, still working full-time and incredibly energetic. Joanna provides health care to First Nations’ people on the Anishnabe tribe reserve. Sometimes she drives hours and hours to get to people. You should see all the dents in her windshield from gravel roads and highways. Joanna is salt of the earth, what VON is all about. You gotta meet her. When you come, bring warm clothes.”

  I meet Janice Bernard-Bain, a home care nurse who works in a rough, downtown Toronto neighbourhood known for its poverty, gangs, and high crime rate. None of that fazes Janice. “I see everyone as an individual who needs care.” She has a no-nonsense, take-no-prisoners manner with her clients that conveys respect and affection.

  “It begins when I make that first call to a client and introduce myself on the phone. That’s when our relationship begins and trust is forged. Once, I was covering for a nurse who was sick. ‘Where’s my regular nurse?’ the client asked. ‘Your nurse is resting,’ I told him. ‘You’re going to have to love me today.’ Yes, with some clients, I speak in that informal way. Some nurses can be too lofty, using jargon or acting aloof. In home care, you have to know how to relate to people. In the hospital you can just pull the curtain and start doing things to them. In home care you have to be good at relationships. You have to want it.”

  This nurse is impressive, and I’d like to see her in action on the job.

  Next, I meet Angela Cross, who is a home care worker, one of those “invisible people” that Judith spoke about. At tonight’s closing banquet, Angela will receive a Gold Award for exemplary care of residents in an assisted-living facility. She joins me in the lobby accompanied by her husband, who is a dead-ringer for Elvis Presley with his black, slicked-back hair, white hip-hugging jeans, and sequined jacket. It turns out he’s a professional Elvis impersonator. When Angela joins me on the couch, I get a whiff of her perfume, a soft fragrance like velvet peaches. “Elvis” sits beside her and puts his arm around her protectively.

  “I’m just a home care worker,” she says. “I don’t do much, but I love my work and I love my clients.” For years, Angela had worked in an accounting firm, but decided it wasn’t for her. “I enjoy numbers and I’m good with them, but I missed working with people.”

  Four years ago, Angela’s father got cancer and she was determined to care for him at home. “One day he was in terrible pain and I had to take him to the hospital. I’ll never forget the look of relief on his face after he got a shot of morphine. The doctor wanted to admit him but Dad wanted to go back home. ‘I’m taking him home,’ I told the doctor. I was so scared to stand up to a doctor, I was trembling. Dad’s condition was deteriorating and I didn’t know if I could manage to care for him at home, but I wanted to try.”

  Angela is five foot – if even – has a sweet face, and a gentle demeanour. She looks like a pushover, but clearly is not.

  “One day at home my dad said, ‘I want to go home.’ ‘You are home,’ we kept telling him. I panicked, thinking he was losing it. ‘That home,’ he pointed upward. A day later, after a peaceful night, he died. It felt holy, like Christmas morning. We weren’t happy but we weren’t sad. He wanted to be at home and, thankfully, I could provide that for him. It gave me peace knowing I’d fulfilled his wishes. That’s why I became a home care worker. I’m not a real nurse, but I’d like to become one, one day.”

  If that’s not real nursing care, what is?

  Her husband puts his arm around her. He looks like he’s about to break out in song and croon “The Wonder of You.”

  Just as I’m starting to get the impression that home care is all about death and dying, I meet Suzanne D’Entremont from Yarmouth, Nova Scotia, who’s bursting with vitality and enthusiasm about, of all things, “central lines.” A central line is an invasive and risky intravenous line placed into a large, deep vein in the body, some that lead directly into the heart. They are routinely used in the hospital, but because of the specialized care they require and risks they involve, I never would have believed they could be used at home.

  “Yes,” Suzanne says, “our home care nurses care for many clients with central lines. They give chemo and other IV meds, change dressings, and even manage chest tubes, in peoples’ homes.” She gives me her card, flashes me a huge grin, then pulls me in for a big hug. “Come down east for a visit. We’ll show you a good time.”

  Next is Bonnie Schroeder, whose name tag says “Director of Caregiving.”

  “Caregiving,” I say, with a touch of sarcasm. “Isn’t that what we all do? Aren’t we all caregivers?” I settle into the comfy chair, but Bonnie sits bolt upright. She is quick to correct my misunderstanding.

  “No, Tilda. You are a professional caregiver. A registered nurse. You are educated and highly skilled. You chose this profession and are paid for your services. When you leave at the end of your shift, the responsibility is off your shoulders. You get breaks, benefits, and a paid vacation. I’m talking about caregivers who are friends, family, neighbours, and volunteers, caregivers who are conscripted – even coerced – into this role by love or duty.”

  I get the feeling she’s had to explain this before. However, I should know this. I was once a family caregiver, and a child caregiver at that.

  “Family caregivers do the heavy lifting. They save the health care system millions of dollars, but think how hard it is even if you want to do it.”

  How well I know. From the age of six, I helped my father care for my mother, who was physically and mentally unwell. As a child, I was a dutiful caregiver; as an adolescent, a distracted, unhappy one. As a young adult, shouldering the responsibility by myself after my father’s death, I became bitter and resentful. Then I became – what else? – a nurse.

  I immediately identify with Nicole White, who, like me, was a critical care nurse who once had no interest in home care. She runs an adult day program (ADP) in Corner Brook, Newfoundland, a small fishing outport with a population of twenty thousand. The ADP offers a break, or “respite,” as they call it, for family members of people who have Down syndrome, dementia, autism, or mental health issues. “You don’t hear of Alzheimer’s improving, but in a stimulating environment such as we provide, I’ve seen it happen,” Nicole says, her dark eyes shining. “Giving caregivers respite improves family life, even saves marriages. I love my work and feel I’ve found my true calling.”

  Next on the roster is Morag McLean, whose title is “People in Crisis Nurse.” She works in Edmonton women’s shelters, where she encounters women who have been choked by their partners during episodes of domestic violence or as a sexual game. Morag has developed a scientific protocol to help identify strangulation victims. It’s startling to hear about something so horrific from Morag, a gentle, soft-spoken but intense woman. She remains composed as she talks about this shocking phenomenon that often goes undetected and is more widespread than commonly believed.

  “Han
ds can be weapons that are always at hand. Literally. It doesn’t take a lot of strength – even a child is capable of it.” She tells me about a ten-year-old boy whose father enlisted his help to strangle his step-mom. The father blamed the murder on his son.

  “The first time I was alerted to this problem was when I noticed a woman who was speaking in a raspy voice, and the whites of her eyes were blood-red. When she drank coffee she was having difficulty swallowing. I’ve since learned that these are classic signs of choking or strangulation.” Morag explains that she purposely uses those two words interchangeably because “sometimes a woman doesn’t respond to one word, but does to the other. And they’ll never volunteer that information. You always have to ask if you have even the slightest suspicion, and they’ll often downplay it.”

  “So what did you do when you made those observations?”

  “She let me examine her and I found striations along her neck, and bruises. She told me it was only a game. But it’s a lethal game,” Morag says grimly. She tells me about a study published in the Journal of Emergency Medicine that found that the risks of attempted murder increase sevenfold for women who have been strangled by their partner. Forty-four per cent of attempted murder victims had been strangled by a partner. “These findings give us hope that with early detection and intervention, we might save lives.”

  I tell her I’d like to visit her and learn more about the work she does.

  “You are welcome to come, but just know that if you’re the type of nurse who wants to fix people and find quick solutions to their problems, you’ll be disappointed. It’s a long process without a lot of immediate signs of success or progress. Great maturity is required as well as the ability to take in the whole picture, not just deal with moment-to-moment needs. These are women who have experienced domestic violence and abuse. You have to actively create trust and safety – a nurse can’t hide. Often there’s no resolution, goals, or signs of progress. What you’re doing is planting seeds.”

  She’s a gardener, planting seeds. In the ICU, we see immediate results from our actions and I’ve always liked that. Could I put in such hard work and not reap a harvest?

  Dr. Ariella Lang explains that KT (which I’d mistakenly heard as “KD,” which, as any kid knows, is Kraft Dinner) stands for “knowledge transfer,” meaning the process of implementing research findings into practice. She is researching the topic of client safety at home. “Medication errors, for example,” Ariella says. “We know they happen in the hospital, but they are also occurring in homes, too. We don’t know the incidence of medication errors made by family members or unregulated workers, or what interventions could be implemented to reduce them.”

  “They can’t be doing a worse job than we’re doing,” I say ruefully, alluding to the alarming incidence of medication errors in hospitals, as widely reported in the media.

  “Another area I am studying is bereavement support after the death of a loved one.”

  “Do you mean palliative care?”

  “No, I’m referring to the support that families and loved ones need after the death.”

  “Goodbye and good luck” is our send-off to grieving families. We then turn our attention to the next incoming train wreck. No bereavement care for the families, nor for us.

  “You’ll learn about the ways grieving people can be supported when you visit VON’s bereavement programs in Nova Scotia.”

  In the evening, at the closing banquet, there’s a celebratory meal and entertainment by “Elvis,” Angela’s husband. Near the end of the gala, they have a surprise retirement celebration for Jackie, who truly looks surprised and is touched to the point of tears. In a glittering, bejewelled tiara and with a hot-pink feathered boa around her neck, Jackie takes the podium to receive flowers and a plaque, and make a farewell speech. She starts off with a few fond reminiscences of her years at VON, where she’d had the “best times of my life.”

  Jackie was a new, young nurse in a remote, rural posting in the Middlesex region of southern Ontario when she started with VON. “I was so naïve back then. I didn’t think I was even allowed to say ‘Middlesex.’ I could never bring myself to say Middlesex without blushing.” The crowd laughs along with her as she goes on to recount a madcap story involving a burst jar of olives in her suitcase, the briny smell that followed her everywhere, the subsequent heap of laundry, and an eventful trip to the laundromat – admittedly, a silly story, but with her animated delivery, the crowd is in stitches.

  She’s so youthful. It’s hard to believe she’s retiring. I’m not ready to retire – far from it – but I could take a sabbatical to go on this adventure, which now, after meeting so many enthusiastic people doing such interesting work, seems more like an incredible opportunity that I couldn’t possibly turn down than the dull imposition it seemed at first.

  After the banquet on Sunday evening, I sit with Judith in an empty boardroom at a long table upon which is a bonsai tree, a large candy dish filled with mints, and a goldfish in a glass bowl with plastic seaweed and a fake pirate’s treasure chest. The conference is over; everyone is leaving in the morning. Judith is flying to Ottawa, then Washington, then New York City. I’m heading home to my husband, kids, dog, cat, and job, in Toronto.

  “Have you thought about my offer?” Judith asks. “What have you decided?”

  It’s crunch time. These few days at the AGM have been so pleasant, but I haven’t kicked my ICU habit. I’ll go back, I tell myself, after the four months this assignment will take. Denise, my manager in the ICU, has always accommodated my “creative scheduling” habits. I’m sure she’ll let me take some time off work, and still squeeze in shifts whenever I’m in town. I’m not completely sold on this project, but I am drawn to Judith, intrigued by her. Though I’m not going to drink the Kool-Aid, I am curious to see what she sees and figure out why she – and everyone I’ve met – is so passionate about all of this.

  I watch the goldfish swimming around and around in its bowl.

  That’s its home. Seeing that little fish, happy at home, reminds me of many patients over the years who used their final breaths to communicate their last wish – to “go home.”

  Okay, I’ll do it, I tell her, but on one condition. I won’t be bound by VON’s agenda or restricted by only what they can offer me. I want to learn everything – or as much as I can – about health care that takes place beyond the hospital walls.

  Judith accepts my condition and looks pleased with my answer.

  A sabbatical, I tell myself; that’s what this will be. Just dip my toe in, test the waters. Anyway, how hard could it be? It’s a piece of cake, easy as pie – and other pastries, too.

  OUTDOORS

  USUALLY, NOT MUCH HAPPENS in the month of August, but in mid-July, I receive the itinerary of my first visits, to start August 1st. The rest of my trip will continue in September. I will be spending two separate days with home care nurses: one in Hamilton – a medium-sized, working-class city an hour west of Toronto – and the second in Toronto, where I live. I’ll join each nurse on their rounds, and if the clients give consent, I’ll sit in on the visit and observe.

  In the Hamilton VON, at eight a.m. sharp, I meet Nurse Chelsea, eager to show and tell me all about home care nursing. She’s been a nurse for only a year, but is knowledgeable and self-assured. Adorable, too, with wide-set eyes, clear skin, a petite figure in a sky-blue coat over VON navy pants and white shirt. Chelsea launches into the now-familiar refrain.

  “In school, they warned us, ‘Don’t go into home care. You’ll lose your skills.’ But what skills do you have when you graduate? None.” I sit beside her in her compact car while she organizes her day and figures out her route, deferring cases with infection-control issues to the end of the day to prevent spread.

  At the first house we check a client’s blood sugar and give a shot of insulin, then the same at the next stop. It seems strange. “At home, don’t clients give their own meds?”

  “Some people aren’t able and so
me don’t want to.” Chelsea tries to hide the disapproval we both feel. Nurses always believe our role is to foster independence and self-care.

  Chelsea pulls into the driveway of a tiny bungalow with a clothesline and garden gnomes on the front lawn. “I’ve been training Apollina to give her husband’s insulin. Let’s see where’s she’s at with that today.”

  In a dark living room with lacy doilies on every surface, a burgundy shag rug, and heavy oil paintings depicting Jesus as a Greek Orthodox icon, Apollina sits beside her husband on the couch. She timidly pricks his finger and tests his blood sugar with the glucometer while he stares blankly at the TV set, which isn’t even on. Apollina hesitantly but competently draws up insulin into a plastic syringe and gives him a shot in his abdomen. Throughout it all, Chelsea supervises closely and gives them both constant encouragement.

  As we get ready to leave, Apollina accompanies us to the door. “Tomorrow? You come tomorrow?”

  “Tomorrow’s my day off,” Chelsea says gently. “Another nurse will come.”

  Apollina is miffed. She asks for Chelsea’s home phone number and looks surprised when Chelsea won’t give it to her. “But we’re friends, no?”

  “I’m your nurse,” Chelsea says. “I can’t give you my number. It’s policy.”

  “Policy?” Apollina looks puzzled, like she doesn’t know what the word means, then dismissive, as if surely policy doesn’t apply to them. “You want coffee? I make for you.” We thank her but get up to go. I follow Chelsea to the door. Apollina grabs my arm and holds me back. Her fingers find a rip in the sleeve of my jacket. She fondles it as if to say, If you stay awhile, I’ll fix this for you.

  We feel her fear and loneliness. It’s difficult to leave her, but we must; Chelsea has another client to see. Apollina follows us outside and watches us from the side of the house, where she stands rearranging laundry hanging on a clothesline. I can feel her eyes on us as Chelsea backs out of the driveway and turns onto the street.