A story of love, death and food
I didn’t want my husband, Sandro, to die in hospital. So I brought him home
The community care manager burst into my husband’s room.
“I hear you’re going home today!” she boomed, cheerily.
I looked at her, puzzled. Yes, his doctors had agreed Friday he could leave hospital early in the week, but I hadn’t realized that meant first thing Monday morning.
She said if we were ready, she’d press an imaginary button and mobilize 50 support people. We’d receive a delivery of equipment and supplies that evening, with the rest coming the next day along with a nurse and a personal support worker.
After handing me a booklet on caring for a loved one at home, she left.
So began the last climb on our fiveyear roller-coaster ride with aggressive prostate cancer, and my new job as caregiver to my husband, Sandro Julita.
At that point, I didn’t think about taking my sick, skinny guy home to die. I wanted only to rescue him from the hustle and bustle of the hospital with its bright lights, tissue-thin gowns, babble of languages and staff swooping in day and night to poke and prod, deliver depressing food and yet another pill.
An hour later, Sandro was sitting in his favourite brown leather La-ZBoy, dressed in real clothes for the first time in weeks. Exhausted, speaking little, yet still able to flash a trademark smile at the waiters and cooks from his restaurant Piatto, who rushed from Mississauga to say hello.
I was happy and relieved, imagining we could pick up our lives before he’d landed in hospital with a broken hip, which had been swiftly replaced. But that bubble burst quickly as our living room became a train station, and every day brought another heartwrenching change in his condition.
As promised, the boxes of mystery medical supplies arrived, along with a pole and control panel for the temporary saline drip the doctor had ordered. There was a walker, a bath chair and, best of all, a commode chair so he didn’t have to walk up our steep stairs to use the washroom. When he could no longer manage the stairs, a bed magically appeared in the living room.
The morning after we got home, nurse Vlad called to say he was on his way. The tall Russian with the deep voice and gentle manner became a soothing, almost-daily presence in our lives as he checked Sandro’s vital signs, hooked up the saline drip (returning four hours later to unhook it) and monitored the bewildering array of pills and laxatives for the gut-locking narcotics needed to control the pain of cancer-riddled bones.
On Vlad’s days off, motherly Barbara stepped in. We also met nurse Heather, who arrived with tape and other supplies dangling from her pink scrubs. Then there was Susan the formidable, who arrived at 10:45 one night with an acolyte to “install” a pain pump in his arm but was foiled by a missing connection. She finally succeeded at midnight, after telling me to “Turn off the TV,” already at a low volume.
These palliative care nurses are heroic, and they love their job. One told me she was relieved to be away from the hospital, with its rah-rah enthusiasm for trying the next drug, making a new plan and keeping the patient alive at all costs. With home care, the rules are simpler: Keep the patient as comfortable as possible and let nature take its course.
When Vlad left that first day, a young woman with a shock of pink hair arrived, unannounced, and put on her apron. For one precious hour every day, the personal support worker did whatever Sandro needed, whether it was coaxing him to take a sponge bath, making his bed or washing the dishes. It was also my chance to run out for groceries or grab a coffee.
The one person we needed to see sooner was the physiotherapist. After nearly two weeks of pulling my poor husband out of bed and in and out of his chair the best we could, she appeared and showed his son and I the proper way to assist a patient. Even Sandro was amazed the first time I got him up, legs swivelled to the side of the bed, in one easy motion.
Yet this tightly woven cocoon of professional support wasn’t enough, as I discovered you can’t care for a dying person alone. You need friends and family to share the physical and emotional burden. Not just to give you a break and bring news of the outside world, but to tell you, over and over, that you did the right thing, you’re doing your best, and that your loved one appreciates your help even if he or she can’t tell you themselves.
I also realized how much food is tied to love. Sandro’s great passion in life was hunting wild mushrooms, a skill he learned from his father in northern Italy. At the restaurant, regular customers became dear friends.
After 70 years of eating well, I figured my husband deserved better than hospital food and Boost at the end. I was thrilled when he managed a bit of meat, a piece of fresh fruit or a rich ice cream bar. But even those triumphs were short-lived. Soon, he could barely lift a fork to his mouth, and no amount of pleading would make him eat the dinner I’d prepared. Dying people don’t need food, yet we feel compelled to keep feeding them in a desperate attempt to fend off the inevitable.
Still, no doctor came. I heard we were on a waiting list of people who were even sicker, but that he was keeping in touch with the nurses. In the meantime, I was assured that if I needed to talk to a doctor, day or night, someone would be available.
One day, a young guy in jeans appeared at the door; he looked about 20. It was our palliative care doctor from Mount Sinai’s Temmy Latner Centre for Palliative Care. He set up his laptop on the dining room table then drew up a chair to face my husband, bending his head close to ask questions and listening patiently as if he had all the time in the world.
Sandro began to cry and said he wanted to die. After two months of pain and confusion caused by the new hip, he was ready to go.
The doctor said he understood, but asked for one more chance to control the pain by switching drugs over the next few days. If that failed, he promised to sedate him to the end. It was the best he could offer. Within a week, Sandro had slipped into a coma. The night before, I’d called the doctor in a panic after having trouble getting him the few steps from his chair to the bed, his speech reduced to a frightened “Aye, aye.”
At 1 a.m., a nurse arrived to attach a line to his other arm so I could easily administer a sedative. She left a few filled syringes to use when the pain made him restless. There were no goodbyes, no squeezing of hands, just a few days of quiet twilight sleep as the love of my life shrunk before my eyes.
The care workers all urged us to keep talking to him, and we did. A neighbour came over to talk to him in his native Italian, urging him to be strong. I told him I loved him in English, French and Italian. A chef friend came all the way from Gatineau for a few hours and left wonderful food we shared in a quiet dinner by his bedside. I told everyone to greet him when they came and left.
“It’s in God’s hands,” said Vlad, when I asked how long he might have.
It was unseasonably cold the April night my husband died, less than a month after coming home. Though I slept on a mattress a few feet away, I couldn’t hear his breathing over the furnace, and kept waking up to see if he were still alive.
By 4 a.m. I had to put my face close to his to hear him. By 4:30 he was silent, released from his suffering.
At that moment, I was truly grateful to have him home. No hospital phone call jangling me out of sleep, no mad rush for a taxi to be near him.
It was hours before I could call the doctor to come and certify his death, and too early to call the funeral home or his beloved sons. I turned on the light and went upstairs to contact my sister in Kenya, awake on the other side of the world, and to compose a note to friends.
“I suppose I should be sad,” I wrote, “but at this moment I’m happy Sandro’s at peace.”
“I suppose I should be sad, but at this moment I’m happy Sandro’s at peace.” CYNTHIA DAVID