by Tilda Shalof
Richard nods in agreement. “Family and friends have pitched in to help Jim. Respiratory therapists and nurses from the hospital have spelled him off. We had everything we needed in the hospital and nothing here at home. The assumption was always that Jim would be my full-time caregiver.”
“I felt bullied into it,” Jim admits. “I had no choice. Yes, I wanted Richard home, but I was terrified and completely overwhelmed. Suddenly, I had to be the RN, MD, PT, and RT. I had to manage his pills, ventilator, tracheostomy care, plus shopping, cooking, and also hold down my job to support us. We have put together a team of helpful people, but we can’t sustain it. Everyone has lives of their own.”
The burden of caregiving. If only love were enough.… How well I know.
“All of our dreams – gone,” Jim says. “Retirement, growing old together, travel – kaput. I’m on no sleep, constantly listening for alarms, getting up during the night to troubleshoot the ventilator. Then I go to work in the morning. The hospital saves your life but then throws you under the bus. Sometimes I want to say, take him back, I can’t handle it.”
I’m surprised he says this in front of Richard, but Richard nods sympathetically to Jim about the burdens that caring for him has imposed. “When I came home I was like a corpse,” Richard says over the low hiss of the oxygen tank. “Jim had to do everything for me. I could barely walk to the bathroom. I could hardly speak. To have a shower was my daily Everest.”
“The support I have for Richard is wonderful, but I need more,” Jim says. “The ICU team worked so hard with him. How can we let that slide now at home?”
I leave wondering when, and if, I will see them again. Richard’s condition is terminal. Their difficult situation weighs heavily on my mind. I like problems, but only ones I can solve. Sometimes it feels like there’s never enough nursing care.
Dr. Herridge had filled me in about the progress of another of our ICU patients, whom I also remember well. Pat and her husband, Ken Hillcoff, are home now, after a lengthy ICU stay. Pat developed end-stage kidney disease and is dependent on frequent hemodialysis, which they now do at home. Hemodialysis is a major procedure for any patient, involving heavy machines, technical skills, expertise, and sound clinical judgement. I can’t believe it’s possible to do it at home for any patient, much less Pat, whose condition can become unstable quickly. This I have to see. What’s next? Outpatient cardiac surgery? Drive-by appendectomies?
When I call Pat and Ken, they remember me well and invite me over for a visit at their high-rise condo. When Pat opens the door I gasp. She is drop-dead gorgeous – glamorous, even. Out on the street, I wouldn’t have even recognized her, though once, I knew every part of her body, inside and out. Dressed in a black sparkly blouse, black trousers, and sporting bright red nails, she looks ready for a night at the opera. Next, it startled me to hear her voice – so much of a person’s identity, but something I’d never heard, even though I’d conversed with Pat for almost a year. (We rarely get to hear our patients’ voices because most are unconscious and almost all are intubated and on ventilators.)
“I am reluctant to tell my story,” Pat starts slowly. “It’s scary for people to hear.”
“Yes, but look at you now. You’re a success story. That gives people hope.”
Her husband, Ken, is the same attentive, easygoing gentleman I got to know in the ICU. He visited Pat every day and sat for hours at her bedside. “I’m semi-retired now,” he says, “which is good because I have the time to look after Pat.”
“Ken looks at life positively, so I have no choice but to be positive, too,” Pat says.
“My husband is like that, too,” I say. “Brutal, isn’t it?” We commiserate about our eternally optimistic husbands.
Like Richard, Pat flip-flopped between being terribly ill and being extremely ill. She had a fatal lung disease and received a double lung transplant, but then got every possible complication – infections, bleeding, blood clots, kidney failure, and organ rejection. I was Pat’s nurse when she first came back from the OR. Her surgery was so deep and extensive that the surgeons couldn’t close her huge incision. For weeks she stayed in a medically induced coma with her chest open. We could peer inside and watch her heart beat and her lungs rise and fall.
“You were on ECMO. Do you remember?” What does she remember of her lengthy, arduous ICU ordeal?
“Ken told me a lot but I don’t remember much. Thankfully,” she adds with a shudder.
Pat now knows all about the extracorporeal membrane osmosis machine that took over her lung functions for a few weeks. She was in the hospital for three hundred days and has ongoing medical problems such as kidney failure, requiring frequent hemodialysis.
“One day, as I was walking through the hospital, I saw an office with a sign on the door,” Ken recounts. “It said ‘Home Dialysis.’ I assumed it meant a nurse would come to our house to do it for us, but they told me we would do it ourselves. ‘An ordinary civilian can do this? How is that possible?’ That was my first thought.”
“My first thought was how scared I was,” Pat says, her voice trembling.
Ken reaches over to stroke her hand. “At first, they didn’t think Pat would be a suitable candidate because her condition is complicated. She is very sensitive to fluid shifts. If I take off the blood too quickly her blood pressure drops, but then I decrease the rate of ultra-filtration or give her a saline bolus. I’ve learned to draw up the heparin syringe, set up the machine, prime the tubing and the filter. I know how to detect blood clots or air bubbles that can get in there. If her blood coagulates and I can’t return it to her, her hemoglobin drops and she gets weak. Then we have to go to the hospital for a transfusion. I knew how unstable she is, but still, we wanted to give it a try. It would give us independence, not to mention the convenience. So, we took classes four days a week. I had watched Nurse Celine for months and felt that with her help I could master it. Now, it’s great. We go at our speed and do it when it suits us. Now, Pat can drink as much as she wants, and if her weight is up because she’s retaining fluids, and her lungs get wet and she gets short of breath, we just do an extra run. Pat’s condition can change fast, as you know, so I monitor her closely. What works best for Pat is to do three days in a row, then one day off.”
“Sometimes I feel fluid rushing to my lungs, so I have oxygen, if I need it,” Pat says.
“A lot of it is emotional,” Ken explains. “I know how to calm Pat down. We do our mindfulness breathing techniques that Dr. Susan Abbey taught us. Nurse Celine came to our home many times. She’d be sneaky, creeping up to set off an alarm or clamp off tubing, just to see what I would do. Celine gave me her home number and said I could call anytime. I’ve never used it, but it’s reassuring to have it.”
“Tell Tilda about the scary thing that happened,” Pat prompts.
“One day there was a snow storm and the power went off. The machine only has a ten-minute battery and we were in the middle of dialysis.”
“I panicked,” Pat says. “I took an Ativan to calm me down. We had to stop dialysis, and my blood clotted in the filter and couldn’t be returned to me. But that’s the worst thing that’s happened.”
In a few hours, the power came back on and they were able to proceed with dialysis.
Ken explains more. “Before we took this on, a hospital technologist came to check if there was enough space, power, and adequate water pressure. The hospital supplies everything. All we have to pay is the increased cost of electricity and water. It’s the equivalent of water running for six hours per treatment. Then, of course, there’s my nursing wages. Fortunately, they’re zero.” Ken shoots first Pat, then me, a wink. “It’s cost-effective for the hospital, not to mention the benefits to our quality of life. But it’s not for everyone.”
Pat’s chief complaint now is a disturbing one: frequent nightmares and terrifying ICU flashbacks. “I’m right back there. IV poles are swaying from the ceiling and metal panels are swinging at me as I try to dodge them
like in a car wash.” She shudders. “I have flashbacks to one particular night when I had a blood clot in my lungs. Do you remember that, Tilda?”
“I’ll be honest with you, Pat. You had so many crises, I can’t remember them all.”
“Once, in the middle of the night, they had to take me for a CT scan. This hunched old man was pushing me along a dimly lit hallway. The hospital was eerie, quiet, and dark. The radiologist read me the list of all the things that could go wrong. ‘Death’ was on that list. This has all the makings for a horror movie, I thought. It was very surreal.”
“What helps you deal with your PTSD?” I ask.
“Dr. Abbey, the psychiatrist at the hospital, taught me how to meditate and do mindfulness practice. She did it with me in her office. That meant a lot to me. What a trust it sets up between patient and doctor. She didn’t say, ‘Go home and do this yourself.’ We did it together. Now, I do it during dialysis or whenever I become anxious.”
“Pat has a way of working herself up into a state,” Ken says in a soothing voice.
It’s time to set up the machine and begin Pat’s dialysis. “Stringing the machine is the easy part,” Ken explains, confidently winding plastic tubing through levers, spools, and valves, and priming the filter.
“Ken dear, let’s change me into an open-necked top so you can get to my dialysis port more easily.” Tenderly, Ken removes Pat’s sparkly blouse, undoes her bra, and slips a loose T-shirt over her head. On the shirt it says, “Don’t take your organs to heaven. Heaven knows we need them here.” Ken touches her body like he’s handling a treasure, though not necessarily a fragile one. “We work together,” he says. “I keep my mind on the machine and Pat reminds me if I forget anything.”
“You two make dialysis romantic.” While they set up the machine, I leave them alone for a few minutes and look around their apartment. There are beautiful things on display, lots of books on walnut shelves; nothing is out of place, nothing superfluous, no clutter.
When I come back Pat tells me, “I now like beer and football. That’s new for me. Do you think I got that from my donor? But even before my lung transplant, I was complicated and sensitive and that hasn’t changed.” Pat remembers something else. “Do you remember you gave me a manicure one night? It meant so much to me.”
I wonder if she remembers what else I did. She does.
“You asked if you could use my polish,” Pat says. “You put ‘Va-va-va-voom Red’ on your nails so that we matched.”
Guilty as charged.
“I also remember one night eavesdropping on your telephone conversation when you called home to speak to your children. It was one of your sons, after his hockey game.”
“That sounds like me.”
Pat has more ICU recollections. “I remember Dr. Herridge’s kindness. Oh, and Dr. Lazar apologizing to me for being so blunt, but I told him I wanted to hear the truth. One day, in my foggy stupor, I heard a nurse say, ‘She’s never going to make it out of here.’ I’m sure she didn’t know I heard. That was hard to hear. I was very down after that.”
We tend to assume our patients can’t hear us; we’d better think again.
The machine whirls away and Pat and Ken manage confidently. I marvel at the courage it takes to do this.
“Nurse Celine calls to check on us from time to time, but at home, you’re the doctor, technologist, nurse, inventory clerk, order desk, and physiotherapist,” Ken says with obvious pride at what they’ve accomplished together.
Suddenly, I have my own ICU flashback – to Mr. Kadourian. He had end-stage renal disease just like Pat and was on home dialysis, competently managed by his wife, Zenia. But when Mr. K was admitted to the ICU with respiratory problems, we took over his dialysis and basically shut her out. Once, Zenia went over to change the dialysate bags because they were empty. A nurse rushed in to stop her and told her, not as nicely as she could have, “Don’t interfere with our work. Here, we’re in control.” Yet, Zenia had been managing his care, running his dialysis at home, for years. She knew more about how to run a dialysis machine than we did and, of course, she knew everything about her husband. Like most family caregivers, she’d become an expert on his medical condition.
Pat’s memories evoke more memories. “The ventilator. First I hated it, then I loved it. As for pain, yes, there were times when I had pain, but I was never left in pain.” She glances at the dialysis machine. “Arterial pressures are high today, Ken dear.” He gets up to tinker with the settings. “There’s always something, but Ken will sort it out.”
“Do you have any good memories of the ICU?”
“My best memory is Vince, the physiotherapist. Whenever I would say, ‘I don’t think I can do this, but I’ll try,’ Vince would say to me in Yoda’s voice, ‘Do or do not. There is no try.’ He even brought me a little green Yoda action figure that talks. It was Vince who got me walking again.”
Both Richard and Pat had mentioned Vince. I once asked him how he motivates patients. “Recovery is hard work. It’s boot camp,” he said. “Most of us would rather stay in bed than face that. The trick is to remind them of home. Focusing on going home makes patients push through the pain. Home is the biggest incentive, isn’t it?”
Yes, home – it’s what everyone wants.
Ken shows me his spreadsheets. There’s one for recording Pat’s medications, another for vital signs, and another for inventory and ordering supplies. “I’ve got it all under control.”
He certainly does. They both do.
Wendy is a nurse who’s always got her “Zen” on. She’s utterly unflappable, calm and steady, logical and clear-thinking, no matter what emergency comes up. “Nothing stresses me,” she admits, “except when my father got sick.” She’s invited me over to meet her father and mother, John and Mary Hunter, in the cozy suburban bungalow where Wendy grew up.
“Devastating.”
Straightaway, that’s what John says when I ask how his surgery went. He’s a tall, handsome, tan gentleman, the picture of health despite his recent ordeal. In his white pressed shorts and white polo shirt, he looks ready for a tennis match. “A few months ago, I had bladder cancer, then surgery, radiation, and chemo. The surgeons left me with an ‘ileal conduit,’ which sounds a lot more glamorous than it really is,” he says ruefully.
Taking his cue, I add, “Yes, it must be fun having surgery on your man parts and ending up with a urine bag attached to your abdomen.”
“The hospital was horrific. The nurses would breeze in to ask, ‘How’s your pain?’ How was my pain? It was like asking how long is a piece of string? Once I answered, ‘Terrible,’ and she went on a coffee break. The worst part was when I came home. Reality hit. They’d removed the tumour, but my bladder, ureters, prostate, lymph glands, were gone, too. I was a eunuch.”
“It’s like a hysterectomy,” Wendy’s mom, Mary, says. “They took away the baby carriage and left the playpen.”
“Fifty Shades of Grey did nothing for me. That was another loss – my libido. I remember when Peyton Place could get me going. Tropic of Cancer. Now, that’s gone. But the most traumatic part was coming home with this bag and having no idea how to handle it.”
I’m impressed how comfortable Wendy appears to be, listening to her father talk about his sex life. She looks at him so proudly and lovingly, grateful he is doing so well.
“Ursula was my home care nurse – make sure you use her real name in your book. She was beautiful, but when she handled me, I had no sensation. I received such cursory information in the hospital. I think I was in shock and didn’t take it in. At first, when I got home, Wendy helped me. I couldn’t face it. Then Ursula came to see me. I was entitled to eight visits, but near the end of my allotment, I still couldn’t manage on my own. Ursula said, ‘I’ll keep coming until you don’t need me.’ She never gave up on me. One problem was the bag kept leaking. I couldn’t get a seal. If the seal isn’t perfect, acid gets on the skin and causes breakdown – you know this. I’ve since learned th
at there are many people walking around with bags like this. My heart cries for a young man with this thing.” He pauses, thinking of something else. “Say, this book you’re writing. Have you got a title for it?” In a flash, simultaneously, we both know a good one and say it in unison.
“Fifty Shades of Nursing!”
Yes, there are at least fifty. Maybe more.
PICTURES AT AN EXHIBITION
MY CURIOSITY IS PIQUED, which is why, a few weeks later, I find myself attending VON’s annual general meeting. I still haven’t given Judith my decision, but I’m keeping my options open. I’ve decided to decide after the AGM. It’s being held this year in Windsor, Ontario, a small town on the U.S. border with Detroit, Michigan. Not an exotic locale, but with five hundred in attendance – mostly senior management, administrators, and board members – it requires the space of the huge ballroom of Caesars Hotel and Casino.
First thing I notice: they have a lot of meetings. I have an allergy to meetings; I break out in restlessness and impatience. In the hospital, our manager keeps our weekly staff meetings brisk and to the point. They’re brief because we have to get back to work. For our patients and their families, the word meeting has a negative connotation. “Family meetings” always mean bad news. We never hold meetings to say the patient is improving, now, do we? One family used to beg us, “Please, no more meetings.” They’d disappear whenever we tried to schedule one. That’s how I’m beginning to feel; today’s agenda is one meeting after another. During breaks, I mill around, hobnob with the crowd, drink coffee, and nibble on fruit and pastries. Feeling like an interloper in foreign territory, I eavesdrop on their conversations and try to figure out the unfamiliar jargon.
“CM for case manager is now CCC for care coordinator,” someone says. They frequently use the term “KT” and as I am puzzling over that, they start speaking about “KPI.”
I tap the person sitting next to me on the shoulder. “Psst. What’s KPI?”