machado: the pandemic stole my chance to say goodbye
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when my brother anthony’s liver cancer came back with a vengeance last year, i was no longer allowed to be there with him as he waited for painful tests and worrying scans. i joined appointments by phone, but often the background noise was too loud, and i couldn’t hear comments from his specialists, or it was difficult to interrupt and ask questions. i also missed out on reading their faces when they talked about prognosis.
when it became apparent that things weren’t looking good, he begged the clinic receptionist to let me accompany him saying that he needed support. she refused.
i know i am not the only one. the last year and a bit has seen families and caregivers shunted to the side amid restrictions aimed at reducing covid-19 transmission in long-term care homes, hospitals and other healthcare facilities. these essential care partners have become “visitors,” instead of being recognized — and utilized — as the crucial members of a patient’s care team that they are. not only do they offer comfort and support to patients and help with decision-making, care partners are often the voice for those who can’t speak for themselves. they also provide vital support for healthcare workers. in fact, it is estimated that caregivers in canada contribute up to $24 billion in unpaid care to hospital patients, residents in long-term care, home care and other settings.
last week, i was double-masked as i walked past the covid screeners at princess margaret cancer centre to pick up my own cancer medication. i was also meeting my brother for an appointment to discuss his test results — after a week of chest pain and coughing up blood, he was sure the news was bad.
his doctor walked in, took one look at me and sternly explained that visitors weren’t allowed, but as tears welled up in my brother’s eyes, her voice eased. she talked about how there was cancer in his lungs, suggested he get “his affairs in order,” and talked about time. he asked for a year, she offered months. it would be the last time i would hear his voice.
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days later, i stood outside the emergency department of toronto’s st. michael’s hospital, my face hot from the two masks i was wearing. in one hand, i held a brown paper bag hastily filled with food for my mom to eat while she waited for my brother to be admitted to critical care with internal bleeding. in the other hand, my phone, on alert for text updates. as i contemplated the likelihood of getting the bag past the diligent covid screener who i could see through the sliding glass doors, my hand vibrated with a message from my mom: doctor says he may not make it through the night.
behind me were two were paramedics wiping down a stretcher as they debated the newest injury on the blue jays roster.
“they will never let that in,” one of the paramedics said, pointing to my bag. i showed them my mother’s ominous text. “what about now?” i asked, feeling desperate. “i need to see my brother.”
“you can’t,” he said. “it’s hard to be on the inside, you know.”
it’s hard to be on the outside, too.
globe and mail columnist elizabeth renzetti recently wrote about what it’s like on the inside for toronto’s nurses. she described lack of staffing, the extraordinary daily pressures driving nurses into private care, and perhaps most disturbing, the mental cost of seeing so much human anguish and suffering every day. one nurse shared the rage and devastation of families who can’t see loved ones, heartbroken by loss and not getting the chance to say goodbye.
i, too, didn’t get to say goodbye.
on monday, after two days in hospital, my little brother, 46, went into cardiac arrest. the icu doctor called to tell me that he passed away just minutes before, and he quietly invited me to come to the hospital. what i saw there was exactly what you imagine — rooms with patients on ventilators, eyes closed, their faces barely visible because of the thick oxygen masks fitted tightly over their mouth and noses. one room had a large sheet of paper stuck to the door — “patient paralyzed” was typed in big, bold black letters.
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a chaplain sat with my mom on the floor outside of my brother’s room as she sobbed, asking if they were sure he was gone, while the icu doctor answered my questions. yes, we tried to help him. no, he wasn’t in pain. yes, complications like this sometimes happen. a nurse named ryan put his hand on my shoulder and described the minutes before my his last breath: his phone rang, but he didn’t want to answer. he drank half of a can of gingerale and ate some jello. it was orange.
and as i sat holding my brother’s cold hand, a woman walked in quietly, introducing herself as a social worker. she held a small brown bag with a red heart sticker on it. she pulled out four small glass bottles, each with a small scroll of paper inside printed with the jagged lines of a measured heart beat, “we printed his strongest heart beat for you,” she said. then she showed us two knitted pink hearts and a tiny red one, “these are for his kids, and the red one will stay with him so they are always connected.”
i didn’t want glass jars and stuffed hearts though — i wanted my brother back.
when his little boy rested his head on his chest, his tiny hands stroking my brother’s closed eyes as he cried, i could hear sniffles from behind us, and as i turned to look, a nurse stepped away, tears streaming down her face. four others stood still, ready to help if needed. they looked tired, but strong and most of all, present.
covid-19 has taken so much from us — lives, yes, but also the humanity of care, the compassion of touch and the ability to comfort. yet, amidst the devastation around them, on that day, these healthcare workers made room for us to grieve, they shared in our pain — if only for a moment — and they honoured our need to say goodbye.
like many others, i am angry that covid-19 made it so i couldn’t have been there with him. i couldn’t have prevented his death, but i could have held him so he didn’t die alone.
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as my mom and i walked slowly out of the hospital into the cold rain, i carried a clear plastic bag with my brother’s clothes. i thought about all the people who have been denied the opportunity to sit with their sick loved ones, to say a proper goodbye and whisper ‘i love you’ one last time. loss has become so much harder, and healing feels, well, unattainable.
anth, i will miss you forever. see you on the other side.
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