by Tilda Shalof
“I’ll arrange for them to have more home care visits,” Chelsea tells me. “They’re not yet ready to go solo.”
We drive for a few minutes, then pull into the parking lot of a strip mall opposite a grimy, four-storey, pre-war building. As we cross the street, a bus roars by, splashing us with dirty rainwater. “One of the hazards of this job,” Chelsea says, wiping off the bottom of her coat.
The smell of sad cooking hits me as we enter the building – it’s cabbage or potatoes, or both, but to me, it’s the smell of poverty and its residue of despair. On the third floor, an apartment door stands ajar. Just before we go in, Chelsea warns me: “You’ll want to take in a huge breath of air before we go in because once we’re inside, you won’t want to do much breathing. Breathe though your mouth.”
We enter a dim room and are hit with a wave of heat that seems to intensify the pervasive musty, sour, unwashed smell – that does indeed make me hesitant to breathe it into my body. Laszlo, a painfully thin man who looks much older than his fifty-four years, is lying in bed covered with a brown and orange crocheted blanket. Two cats sit like bookends, at his head and feet. A different, but equally unpleasant smell hits me in the hallway, where I step out to get away from the bedroom’s stench. This stink is emanating from the bathroom, lit only by a night light. The bathtub is filled with well-used kitty litter for the two cats, plus two more I spotted, one stalking a fake fur mouse and the other nibbling cat food from a bowl on the floor beside the toilet. That makes four.
Back in the bedroom, Laszlo had been watching a chef prepare a bouillabaisse on the Food Channel, but turned it off when Chelsea arrived. They are chatting and he looks so much happier than when we first arrived. Chelsea is here to irrigate his urinary catheter, which is draining sluggishly due to sludge and sediment. Without irrigation, the catheter could become blocked. Chelsea opens a closet where the medical supplies are stored and out pops another cat. Five. Using a footstool as a procedure table to lay out the sterile syringe and bottle of saline, Chelsea gently performs this simple procedure. My ICU instinct prompts me to want to measure the urine and to wonder about his hourly output, but I remind myself that such close tracking of ins and outs is not necessary at home. It’s hard to make the switch. In the ICU, I know each time my patient coughs, along with the amount, consistency, and colour of phlegm; out here, I might not know if my patient even had a cough.
Laszlo has ALS and can move very little. In an hour, a home care worker will come to give him a bed-bath, get him up into a wheelchair, and feed him. He waves a cheery goodbye as Chelsea packs up to go. “Work smart, not hard,” he calls out to her.
That’s exactly how Chelsea does work, constantly updating her schedule on her phone, calling ahead to make sure the next client is ready for her.
What a relief to get outdoors, away from the heat and smells. “It’s August and it felt like the furnace was on. It was like a Bikram yoga studio in there.”
“You’ll find a lot of people keep the heat cranked up,” Chelsea says.
Next, we meet Mina, whose home is also overheated and close with repellent odours. Mina is a morbidly obese diabetic whose mobility is restricted due to her massive size and swollen arms and legs. She sits on a couch in track pants and an oversized sweatshirt covered in matted pills. Her legs are inflamed and dripping with infected fluid. With such a protruding stomach, there is no way Mina would be able to reach them herself to apply ointments, dressings, and pressure bandages. Her husband, Al, who’s sleeping off a hangover, takes care of Mina unreliably. Chelsea suggests leg exercises to improve circulation and Meals on Wheels because grocery shopping is difficult for them and their diet is poor. Mina speaks Portuguese and little English, so conversation is limited.
As Chelsea starts to clean and wrap Mina’s legs, Mina complains of pain in her big toe. “Dolore, dolore,” she moans, pointing to the place where her right big toe once was, where there is now an empty space. Her toe was amputated due to gangrene. It’s phantom pain, Chelsea explains, though pain, nonetheless. After treating her legs, Chelsea checks to make sure that Mina has a sufficient supply of painkillers on hand.
“Yeah, yeah,” Al mutters. He’s up now and busy cooking in the kitchen. “Give her some of those number threes of Tylenol,” he hollers.
The smell of frying meat wafts in, making me instantly queasy. Al is cooking lunch for their blind dog, Taser. I watch from the living room as Al pours half a bottle of barbeque sauce into the frying pan. “Would you like dry chicken with no sauce? I think not.”
Back in the car, Chelsea says, “In some homes you may see behaviours that you disapprove of, but you don’t want to lecture or impose your values onto your clients. If people choose to live a certain way, what right do we have to change it? You have to always remember, you are a guest in their home. You have to tread lightly.”
“We face the same issues in the hospital when people’s lifestyle choices affect their health or if they don’t take care of themselves, but we have a lot more leeway to try to bring them in line. Afterall, there, they’re on our turf. They go by our rules.”
“In their home, we respect theirs. It’s whatever they say.”
“In the hospital, it’s what we say.” I realize that now.
But one thing I’ve learned: Complex decisions about health care spending and about the burden that people’s personal behaviours place on society should never be conducted at the bedside – or on an individual basis. They are best left to public debate and policy development.
Watching Chelsea at work does make me realize something: in the hospital, we talk a lot about “patient-centred care,” but now I see what PCC actually looks like. In the hospital, we still have a long way to go to create a culture that puts patients first, that is truly patient-centred, not doctor-, nurse-, or technology-centred.
As we drive to our next stop, I notice something else that’s different about home care nursing; you’re not in the hospital. Not to be in the hospital feels completely different – liberating and soothing. Best of all, you’re outdoors, which feels wonderful, because no matter how smoggy, polluted, or humid city air may be, it’s fresher than hospital air.
Another thing. Yes, Chelsea is efficient, but she’s not rushing in, getting the job done, and racing out. She stops to talk with her clients, not just about their health but their families and their interests, too. Everything she did for Laszlo, and then for Mina, she did while talking with them, asking questions, and observing closely. And there’s no swagger, no bravado, and none of the forced cheeriness many well-meaning hospital nurses offer to placate or cajole patients. I never realized how brisk and authoritative we can be in the hospital until I heard the slow, calm way Chelsea spoke to Laszlo, and saw how unhurriedly she opened the irrigation kit, draped a sterile field, took down the covers, exposed his penis, cleaned the meatus, disconnected the catheter, irrigated the bladder, et cetera, all the time touching his body so gently. Believe me, I would have done that little procedure so fast it would make your head spin. In the hospital, we go at one tempo – prestissimo. In people’s homes, you go at theirs.
At the next house, a man stands at the screen door, waiting for Chelsea.
“Giovanni! What about the pasta we talked about? The ice cream?” Chelsea pretends to scold him. He’s lost more weight since undergoing chemotherapy for colon cancer and is very thin. Chelsea asks about his diet, appetite, and energy as she disconnects a small bottle of chemo that had infused into the IV port on his chest. She strikes a balance between the familiarity of pals and the objectivity of a professional. Chelsea takes his vital signs and inquires about his weight loss, bowel movements, nausea, mood, and his wife and her health issues. Giovanni is upset about ten dollars he had to pay for an extra delivery of supplies that another nurse failed to order in sufficient amounts. “It’s a lot of money for us.”
Chelsea goes out to the car for more supplies and explains, “In the community, we work on a shoestring. Once, I actually used a
shoestring – a hockey skate lace – plus duct tape, to bind a hernia. I’ve used coat hooks to hang IVs and plastic milk jugs for sharps containers.”
Guiltily, I think of our hospital stockroom, jam-packed with lots of everything, most of it disposable, along with a laboratory-created product to be applied to every bump, bruise, wound, abrasion, and fissure. (For an ordinary bed-bath we’re supposed to use chemical-soaked, antimicrobial-impregnated, pre-moistened “towelettes” instead of plain old soap and water.) In the hospital, we go through supplies as if they are unlimited. We use them liberally, and rarely give a thought to the cost involved or the waste created.
At the next house, Norma, a retired schoolteacher with kidney cancer, has a drain in her abdomen that takes thirty minutes to empty. She hangs her drainage bag on a cupboard door handle to allow gravity to speed up the process. Chelsea takes her blood pressure before and after, both sitting and lying down.
“I love having a nurse visit me,” Norma tells me. “Last week at the hospital a young medical student examined me. He was so formal! ‘How did your disease present itself?’ he asked me. I thought of saying, ‘It said, Hi Norma, it’s me, Cancer.’”
Afterwards, Chelsea and I stop at Tim Hortons. “It’s still strange to call patients ‘clients,’ ” I say.
“Think of it this way,” she says. “In your own home, you’re you, you’re not a patient.”
She has a point.
We move on. In the moments before we enter each home, I feel apprehensive. There’s a way that entering people’s homes is as invasive as putting catheters into their bodies or my fingers inside them, things I routinely do in the ICU. Yet each person who opens the door is pleased to see us and welcomes us in.
In between another two visits, I ask Chelsea about home care nurses’ wages. They are less than the going hospital wage, but Chelsea likes that VON pays a salary, not a fee-per-visit, like for-profit home care companies. This arrangement gives her more financial stability and means she can stay with her clients as long as necessary, without any pressure to rush and make as many visits as possible to increase her income.
“Let’s say you’re going in to give an injection, but you see other problems, like skin breakdown, or a burnt-out caregiver. You can’t put blinkers on and ignore that. You have to stay and address that. You stay until the work is done.”
I can see how that’s probably not the best business model, but the perfect nursing one.
Another personal question: “Aren’t you lonely working by yourself? I’d miss working with a team.”
“The client and the family become your team,” Chelsea says, but I’m not convinced.
“What about the socializing, the gossip? Who do you eat lunch with? Shoot the breeze with? Talk with about a complicated situation?”
“We have a daily phone huddle, conference calls, and monthly team meetings in the office, but it’s true, out here, you have to be self-reliant. If I listen to someone’s chest and it doesn’t sound right, it’s up to me to know what to do about it.”
As for socializing, it is a welcome change to get to talk directly with clients and it’s satisfying to be doing things with people, not to them. In the ICU there are so many procedures and treatments that we perform on our patients that no amount of gentleness or painkillers can mitigate. Often, it seems, our treatments make people feel a lot worse in the hope of making them better. Home care nursing feels more beneficent than hospital nursing. And I don’t know if it’s VON or home care itself, but there is a culture of kindness here that is often lacking in the hospital. A detached attitude, a harsh word, or a lack of basic courtesy would be unacceptable out here. Unfortunately, it is commonplace in the hospital.
We have seen a lot of people over the day – ten patients in eight hours, which included time for driving, parking, telephone calls, and charting. In fact, I learned they leave the client’s chart in their house and encourage the client to read it and make their own notes in it. In the hospital, you have to make an appointment with a senior administrator for permission to view your chart and can only do so in their presence.
“We’re not as tied to the computer as you are in the hospital,” Chelsea says.
“Tell me about it. Computer charting often takes me away from my patients.”
Chelsea takes pride in her relationships with clients. “I’m sure I could work faster if I didn’t stop to chat, but it means so much to them and to me, too.”
“In the ICU you can be a decent, safe, and competent nurse, know everything about a patient’s medical problems, but nothing about them as a person.”
“In home care, that wouldn’t fly. Knowing the client is part of your care. You have to want that connection and be good at relationships.”
I wonder what it would be like to work in this gentle, slower-paced environment, rather than the full-tilt pressure cooker of the hospital.
“I love home care,” Chelsea says. “Every day, I’m so excited to see my clients.”
“I gotta tell you, you’d be hard pressed to hear a hospital nurse say that.”
Our last stop of the day is to see a client who lives in a subsidized housing complex. It’s an old building with creaky plumbing and infused with the pungent smells of exotic spices. We stand out in the dimly lit hallway, knock on the door, and wait for Anwar, Chelsea’s client. A toilet flushes and water and waste gurgle through the pipes. Eventually Anwar opens the door. Before entering, we slip off our shoes and add them to rows of other pairs of shoes outside the door. Anwar is shivering, wrapped in a blanket, a full urine bag dragging along the floor. He doesn’t say a word, and we both become alarmed when he stumbles across the room and slumps down to the floor to lie on his prayer rug. Chelsea takes his temperature while I take his pulse and blood pressure. He is too weak to talk, only managing to say, “Thank you for the very good care.” Anwar has leukemia, so Chelsea knows he could go into septic shock very quickly. She calls an ambulance and we wait until it arrives to take him to the hospital.
“His wife left him,” Chelsea tells me. “Here they are, alone in a foreign country, with a six-month-old baby, and he’s so ill. She couldn’t cope and went back to her family in Nigeria.”
“In the hospital, we see only their illness. You see their lives.”
It was a great day. For such a young nurse, Chelsea is wise. I learned a lot from her.
For my second assignment, I get to spend a day in Toronto with Janice, the home care nurse from the AGM. I remember her strong hands, lustrous brown skin, perfect teeth, and, most of all, the forthright, lighthearted way she described her client interactions. Her territory is a sketchy neighbourhood, one I don’t usually frequent. It’s often in the news for all the wrong reasons: gun violence, racial tensions, gang warfare. Janice thinks the media profiling worsens the problem. “The real problem is poverty, because that leads to poor health, despair, loss of dignity, and resorting to crime to survive and drug addiction to numb the pain.”
Janice’s first client is an eighty-year-old Chinese man who has dementia. A daughter stands off to the side of the living room, staring at us warily, while the son and father sit on the couch. The room has little in it, other than the couch and TV. The only decoration is a serpent-shaped calendar for the Year of the Snake.
“I like the hospital.” The father gives a huge, toothless grin. “I hate it,” the son tells Janice. “I’m the one who has to take him.”
The father rocks back and forth. The daughter still stands, now scowling at us in a menacing way, not saying a word. The son has folded his arms across his chest and looks away from his father and us.
“I like the nurse at the hospital,” the father says. “She’s very nice.”
“That nurse is okay. I’ve seen better,” the son grumbles.
“It’s a party. I like it. I like it.”
“Some party,” the son mutters.
“This is our first meeting today, so it’s just a checkup,” Janice explains to them.
“I’m good. Very good,” the father says. “No complaints.”
“Tell the nurse about the pain, Dad.”
“I feel good,” the father says.
“But what about your pain? In the night?”
“I feel good.”
“He doesn’t know what he’s saying. He’s on his best behaviour for you.”
“What do you see as the problem?” Janice asks the son.
“He has these urges. Sexual urges. Cravings, too. For sweets. His blood sugar is up.”
The father beams. The son is upset. The daughter stands frozen, staring, unblinking.
“Dad won’t do what I tell him,” the son says. Janice nods at him while taking the father’s blood pressure and listening to his chest with her stethoscope. “Don’t bother doing that,” he tells her. “His doctor already checked him out.” Janice gives him a look over the top of her glasses that silences him momentarily.
She turns her attention to the father. “How are you feeling, Mr. Chung?”
“I love to visit the Princessa Margarita,” the father sings out, clapping his hands.
“He means Princess Margaret Hospital. That’s where we go for his chemo.”
Back in the car, Janice identifies a number of issues of concern that she plans to follow up on, and asks me my impression.
“There’s a lot going on there. The family dynamics look complex and the daughter seemed catatonic, possibly paranoid. Well, definitely, not normal.”
“Normal is overrated,” Janice says with a laugh. “Whatever normal is, you don’t see much of it. You see a lot of people who have mental health issues. So often they fall through the cracks of the system and don’t get the care they need.”
I have a feeling that on Janice’s watch, no one falls through the cracks.
We drive through the city streets, past Lucky Store, Jimmy’s Felafel House, Cash Converters, Pay Day Loans, bingo halls, dollar stores, and a subway underpass covered in graffiti. A Salvadoran restaurant serves pupusas, a Korean place offers barbeque, a Filipino storefront arranges “remittances,” and an Indian grocery store is doing a brisk business this morning. Janice pulls into a parking lot to call the next client. “No, I haven’t forgotten you,” Janice assures her. “I still love you. I’m on my way.” She turns onto a quiet side street. “You’ll meet Louise, a seventy-one-year-old with CML, chronic myeloid leukemia.”
