Fried rice, pumpkin pie, mincemeat tarts. Oatmeal topped with brown sugar, flax seeds, raisins, dollops of yogurt. Licorice allsorts, chocolate squares, toast with marmalade.
• • •
My dad always loved eating. And who can blame him, or any of us? Food brings pleasure, nourishment, a satisfying break from the day’s tasks. Accepted wisdom: if you love food, you love life.
Except. Everything changed the day he collapsed on his way to the kitchen for a cup of tea. A massive stroke put him in hospital, unable to walk, barely able to talk. Despite rehabilitation efforts, despite medications, despite the plastic trays of grey roast beef and red Jell-O, he became weaker, not stronger, over the month that followed. My mom and I would visit, ever more concerned. He’d lost strength, interest in eating. Just that lunchtime, he’d coughed and gurgled through a spoonful of hospital-tray yogurt. Most of it ended up down his face, undignified strawberry in his beard. Something was going wrong.
The doctor told us the news in the tiny room behind the nursing station, the one stocked with extra boxes of Kleenex. “We now know the stroke damaged the part of his brain that controls swallowing,” he continued, matter-of-factly. “He’s aspirating food, and it’s getting into his lungs, causing pneumonia. Your dad’s a very ill man.”
Breathing food. I grew quiet. The thought of choking makes me nervous. I choked on a hot dog as a preschooler, a piece of meat as a teen. My brain can control swallowing, but ever since I have eaten slowly, chewing every bite—a mindful eater long before it became en vogue. I eat carefully, even fearfully at times. Felt it again when my toddlers tackled popcorn, steak, raw carrots. And now, with my dad. And yogurt.
“He can’t eat anymore.” The doctor shook his head, explaining that while the food was causing Dad’s pneumonia, it also meant he wasn’t getting enough nutrition to fight the pneumonia. To stay alive. “At some point, probably in the next two days, I’ll have to intervene.”
“To do what?” my mom asked, breaking her worried silence.
There were two options, the doctor said. A nasal feeding tube, while extremely uncomfortable for the patient, might offer a short-term solution. Or, if he became strong enough to endure surgery, he could have a feeding tube inserted directly through his abdomen.
“Only two options?” we asked.
The doctor paused gravely. There was a third. “You can let nature take its course.”
• • •
Sandwich generation. It has two meanings: More literally, it’s the ongoing preparation of easily consumed food, generating ongoing energy for those who consume it. Less so, it describes people like me, who seem to be the ones actually making all those sandwiches.
When my family first moved in together, forming a three-generation household of kids, parents, and grandparents, my dad joked that he was in the best retirement home ever. And for three years, I had been head chef for our household, while my dad kept up with his fine art painting, and my mom ran her business. Apart from the occasional moment when it became just one more chore on my sandwich generation to-do list, I mostly enjoyed cooking. It was fun to prepare food I knew my dad would appreciate and enjoy. Fried rice. Pumpkin pie. Mincemeat tarts. None of which he would ever eat again?
I stared at the doctor with disbelief. “Will the feeding tube replace all other food? Because I could make purees, bring them to him. Or what about soup?”
The doctor smiled, not unkindly. “You’re being a mother,” he said. “You have this idea that feeding the ones you love is the only way to make them well.”
“Will it even help?” I asked.
The doctor shrugged. “It’s his best shot.”
It was, we all knew, his only shot. The food was killing him. Without food, he’d die.
• • •
NPO. Nil per os. The notice went up on the whiteboard by Dad’s bed. Nothing by mouth. The hospital had decided, on a Friday afternoon, not to risk feeding him until the nasal tube was installed. First thing Monday morning. As the weekend passed, he grew weaker and weaker, his voice barely a whisper, his hands too frail to sign the consent for the procedure. Now he had pneumonia, and he was starving. He had to be lifted by sling into his wheelchair.
“It’ll be uncomfortable,” I told him. “But it might help.” I was pushing him across the hospital parking lot, our daily outing. I liked to stop by the bramble bushes to snack on the ripe early September blackberries, sating my own busy-day hunger. This time, I turned him away so he couldn’t see me gorge like a bear preparing for hibernation.
I love food, but find it hard to trust. It’s not just the swallowing. It’s what happens when you eat something that could do you harm. Food that causes pneumonia. Hidden allergens causing anaphylaxis. When I was a teen, both my brother and I ended up in the emergency room after unknowingly eating nuts. For years afterward, I could eat next to nothing. Too scared to have another allergy attack, I was surviving on rice cakes, apples, black tea. Surviving.
You have to eat to live, I was told. So I added milk, timidly, then corn, then more and more foods. But still, I’d carry emergency antihistamines, read ingredients obsessively, avoid restaurants, say a silent grace before I consumed anything: This food is safe for my body. I will not die from this food. Eventually, I learned to cook, partly in self-defense. If I cooked it, it would be safe. If I cooked it, it would keep me—and those I loved—alive.
• • •
On the Monday morning, I arrived while the insertion was happening. Waiting in my car, I sniffled miserably at the thought of my dad wincing while technicians threaded a thin plastic tube through his right nostril, down his throat, into his stomach. I found out later they had to try three times to get it right, to make sure it hadn’t slid into his weakened lungs instead, hadn’t made a dangerous J that would push fluid back up his throat.
The tube was taped to his nose and cheek, veering past his reddened eyes. As uncomfortable as it looked, I reminded myself it was a temporary measure, to be replaced by a permanent tube. Or not replaced at all.
Sitting on the edge of his bed, I broke off a small square from a chocolate bar, popped it into his mouth. The chocolate melted, smeared his lips and teeth, dissolved. Made him cough. Eating it could kill him. I felt scared. Subversive.
As far as either of us knew, it was the last real food he’d ever eat.
Soon, a nurse arrived to administer his first “meal,” a condensed-milk can containing a vilely sticky formula. It looked like pale gravy as she poured it into a vinyl bag that dripped the liquid into a tube, through a machine that regulated the flow, and into the tube in his nose.
“Pretend it’s roast beef,” I joked as it trickled in. “Now pretend it’s ice cream and pie. You can’t choke. You don’t even have to be awake to eat.” It took him nearly two hours to consume 250 millilitres. “You’re eating even slower than I do, now.”
I couldn’t help but read the ingredients on the formula can: maltodextrin, corn oil, soy protein isolate, oat fiber, fructooligosaccharides, medium-chain triglycerides, unpronounceable vitamins and minerals and electrolytes. Baby milk for adults—a magic formula that seemed to work. Over the next weeks, he fought off the pneumonia, grew more alert. But the tube down his nose was becoming irritated, and, when half-asleep, he’d try to pull it out. Sometimes he’d succeed, necessitating another uncomfortable insertion.
As soon as he was strong enough for surgery, doctors installed the gastric tube. “Extreme belly piercing,” I joked, the first time I saw it. The tube was strangely comic, a clear plastic tunnel sprouting from the left side of Dad’s abdomen. It ended in a Y-shaped device, the branches capped like beach ball valves.
“You’ll be easy to cook for, now,” I told him. His day’s rations were now up to two cans of formula for breakfast, one for lunch, two more for dinner. It kept him alive. Barely. For someone who once lived to eat, was plain nourishment enough?
A month later, he still couldn’t walk, still couldn’t turn himself over in bed. But the hospital decided it was time to send him home.
“You can do this feeding yourselves,” the nurse said. “Just order one case of twenty-four cans to start with—it’s expensive. And you can always order more. If you need it.”
“If? He might be able to switch back to food when he’s home?” I asked hopefully.
She grew silent. That wasn’t what she meant. “He can’t walk anymore. He can’t eat. You have to think about quality of life.”
• • •
The day he was brought home, a team of dietitians arrived to show me, my mom—even my ten-year-old—how to attach the gravity feed bag of formula to a borrowed IV pole and then to Dad’s tube. How to adjust the valves to keep from splashing formula—or gastric juices—all over the floor.
“Real food is out of the question,” said a dietitian. “See that drool? His swallowing reflex still doesn’t work. If he aspirates, you’re right back to pneumonia.”
But he was home. That night, we wheeled him to the dining table, attached the feed bag more or less successfully. While Dad’s formula dripped, my mom, the kids, and I ate spaghetti. Everyone wearing brave faces, saying the experience of him being home was nourishment in itself.
As weeks passed, his lingering cough began to vanish. He didn’t drool anymore, which suggested he might be swallowing. One night as he sat watching the rest of us eat dinner, I gave him a dab of hot sauce on a spoon, just so he could taste something. His eyes watered, but with pleasure. Soon, he tasted a dab of gravy. Then ketchup. And didn’t choke.
Encouraged, his doctor suggested popsicles. Eager to cook something for him, to make him well, I made V8 popsicles, then gravy ones. They didn’t make him cough. The pneumonia stayed away. He tried yogurt. It worked. I bought a blender for Christmas, fed Dad pureed turkey dinner. With a spoon. While his formula dripped in through his belly, he ate a whole bowlful.
By the New Year, the chunks in his food began to get bigger. The formula doses became smaller. His neural pathways were rebuilding like a set of new highway overpasses over an earthquake chasm. Like I did by relearning to trust food, his body relearned to trust its own ability to chew, swallow. Slowly. Purees moved to chunks, chunks to whole mouthfuls. Sandwiches, pies, ice cream. Soon, the blender sat unused, and the feeding tube, once so necessary, became redundant.
“I’ve never done this before,” the doctor said when he removed it. Such things are usually a one-way trip.
I made fried rice for dinner that night, the family favourite. We all gathered at the dining room table, hungry and ready to go on living. My dad still in his wheelchair, but devouring every bite.