I quit my job and moved home to look after my mother and father

In early 2017, my dad started complaining about problems with his legs. He was 67 at the time, a retired factory worker who still lived with my mom in my childhood home. He had aches and pains, he said. His legs were stiff. Once, he toppled over while working in the garden. Another time, he stumbled in the dead of winter; a neighbour found him lying in the snow 10 minutes later. That summer, he was diagnosed with progressive supranuclear palsy, a rare neurodegenerative brain disorder that was preventing signals from passing between his brain and his limbs. Before long my active, healthy dad needed help just getting to the bathroom. He had no balance and couldn’t even hold utensils. At the time, I was in Toronto, working for a large PR firm, and I was only able to get home once a month or so. My two sisters took on most of his care.

A few months after my dad’s diagnosis, my mom, then 61, was cooking lentils in a pressure cooker. She fainted from the heat and inadvertently pulled the pot down with her as she fell. She sustained third-degree burns on 44 per cent of her body. Suddenly both of my parents were entirely dependent on my sisters. I watched from afar, wracked with guilt.

Last summer, I realized things needed to change. My parents had spent their lives taking care of me, and now it was my turn to take care of them. I rented out my house on Airbnb to cover my mortgage payments and resigned from my job. Then I packed my bags and moved back home.

The schedule was far more gruelling than I expected. Every day, I woke at 6 a.m. to take my father to the bathroom. A personal support worker came over for an hour to help him brush his teeth and wash up, another arrived at noon for his bath, and a third came at night to help him get ready for bed. My mom had another rotating crew of support workers to help her bathe and perform occupational therapy. I did everything else. I shopped for groceries and cooked their meals. I paid bills and took them to appointments. I helped them go to the bathroom and eat throughout the day. My dad was diabetic, so I was constantly checking his sugar levels. I barely had time to shower—and when I did, I’d hear my parents crying out for me. In my limited spare time, I did a bit of freelance work to bring in some income.

At times, I felt lonely and helpless. I’d scroll through social media, watching my friends have fun without me. Dark circles were forming under my eyes, and I lost 13 pounds in three months. One day, I was brushing my hair after a shower when a large clump fell out. Later, I noticed a bald spot at the crown of my head. My doctor told me it was alopecia resulting from stress. I was keeping my parents alive, but they weren’t getting any better, and now it was affecting my health. I spent my limited downtime researching new treatments, combing through Internet forums in search of hope. I consulted doctors through online second-opinion programs and spoke to naturopaths who talked me into buying immune-boosting supplements. I hired a reiki healer to work on my mom and got a personal trainer to walk with my dad around the garden. Nothing helped.

There were happy moments. The three of us had dinner every night—my mom loved my lasagna and hated my healthy shakes—and I confessed to my dad that I’d taught myself to cook as a kid by copying down his recipes. In warm weather, we’d all sit outside on the patio, taking afternoon tea, and in the evenings, we’d watch TV. My mom and I laughed a lot—at things I’d show her on Instagram and YouTube, at my nephew’s adorable antics when he visited. We’d have tears streaming down our faces, and my dad would smile at us and shake his head. On our hour-long drives to appointments every week, they’d tell me stories about their lives and youthful adventures. I saw myself in them, and I saw how much they loved each other.

I also talked to other caregivers I’d met online. I eventually started a podcast, which I’d record in my dad’s closet while a support worker was giving him a bath. I’d interview caregivers about their experiences. It served as a kind of therapy: when I realized how many people were in the same situation as me, I didn’t feel so alone.

By last fall, I was exhausted—it felt like I’d been caring for my parents for years, even though it had only been a few months. My sister and her husband moved back home to give me extra help. At first, we argued a lot, but deep down, we knew we weren’t angry with each other. We were sad. We didn’t have parents anymore. We were the parents.

Toward the end of last year, my mother’s condition deteriorated to the point where she couldn’t fight any longer. On December 29, 2018, she drifted into a coma. I held her face in my hands and whispered, “You can leave now.” The next morning, she took her last breath.

Early on, I thought of my caregiver role as a way to repay my parents. Now I realize it was a chance to be with them during their last days. It’s the hardest job I’ve ever had. It’s also the best.

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