By: Jenna Matthews
Updated: Dec. 11, 2019
When my phone rang, the caller ID displayed the elementary school nurse. A knot tightened in my stomach as I braced myself for news about one of my kids. One has asthma, which is always a concern with changing weather; the youngest has a sensitive stomach, and the oldest had been up late reading. It could be any of them. When I picked up, it was the school social worker on the line.
“I wanted to update you about how your daughter is doing today,” she said, and I felt my anxiety spike.
Two weeks into the school year, their dad had undergone his third surgery for brain cancer. He spent nearly a month in the hospital, where he suffered a stroke, experienced brain swelling, and sustained a myelin injury, leading to a loss of function on much of his left side. The only times the kids saw him before coming home, he was still covered in blood and ointments, his scar a chaotic mix of stitches, staples, and dark scabs. He put on a brave front for them, forcing a smile even when his eyes were filled with despair.
During the first week of school, I had numerous conversations with the children about their father. I explained what he was doing at the hospital, shared his jokes, and reassured them. When they expressed fear or sadness, I told them, “It’s okay to feel this way. I’m scared and sad too. But Daddy is doing well, and he’ll be home soon. We’re in this together.”
While I was deeply concerned about their father, my greatest worry was for the kids.
Before school started, I had spoken with the social workers to set up a plan. Now, as Thanksgiving approached, they reminded me that things were not “back to normal.” Their dad still hadn’t returned to work, couldn’t drive, and our meals consisted mainly of takeout or pre-prepared food from friends and family. Our house was in disarray. He was still relearning basic tasks like buttoning a coat, and he needed a cane and leg brace to walk. On one day a week, a family friend would prepare breakfast and send the kids off to school since we were busy driving to the hospital for MRIs and chemotherapy. On those days, they only saw us at night, when we returned with no easy answers about their father’s condition.
“It’s okay,” I reassured them. “Daddy has been living with brain cancer since before you were born.” But I never told them that our decision to have children was influenced by the specter of a terminal diagnosis. We didn’t want to delay starting the family we had always wanted; our three children were born within less than three years.
In my quiet moments, I’d remind myself that if he could just hold on until the kids turned eight, they would have lasting memories of him. This surgery and its complications came just two months after our youngest turned seven.
The social worker’s voice continued in my ear, cheerful yet concerned, as I braced myself for the news. Was my daughter wandering the school in tears? Did she have an outburst in class? Had she been affected by her father’s fall the day before when a friend’s mother needed to bring her home from basketball practice because I was preoccupied with ensuring he wasn’t seriously hurt?
“She’s worried about you,” the social worker said. “She says you’re having a really hard time right now.”
The words hit me, and it took a moment for them to sink in. “What? Me?”
“Yes, she says you feel overwhelmed.”
I let out a nervous laugh. “Well, yes…”
“Are you okay, Mrs. Matthews?”
I wanted to plead with her not to ask that question, but I took a deep breath instead. “Things are tough, but I’m managing.”
“I think you should talk to the kids about it; it’s okay to have a rough time.”
“I know,” I replied, “but I wish she wouldn’t worry…” Acknowledging my own struggles felt selfish, especially when my husband was the one suffering the most.
The social worker suggested ordering pizza for dinner, as if we weren’t already eating pizza three times a week, and offered some kind words before hanging up. I barely heard her, too busy wrestling with waves of guilt crashing over me.
To be fair to my daughter, I was not okay. The overwhelming burden had become suffocating. Night after night, I’d lay out a picnic blanket in front of the TV and serve reheated meals—pizza, pastas, takeout—then sink into the couch too exhausted to read a bedtime story or tackle a sink full of dishes. I was too preoccupied with organizing my husband’s treatment binder and sending emails to his doctors to sing a lullaby.
While Daddy wasn’t back to normal, my inability to maintain our usual routines was the greater issue for the household. Twelve years of practice had honed me into an adept caregiver and advocate, but I had never figured out how to care for myself.
That’s the challenge with caregiving. It’s also true for parenting. You prioritize everyone else’s needs until your own fall by the wayside. You can go days without showering. You can survive on PB&J crusts eaten over the sink. You can even manage with only a few hours of sleep each night.
But we all know that eventually, something must give.
When caring for someone who is terminally or chronically ill, there may be expectations for recovery—or there may not be. The moment you decide to take a break could come at an unacceptable cost. The weight of caregiving, willingly accepted, holds the potential for burnout.
As for self-care, the closest I had come to understanding it was telling my husband, my best friend, that I needed an evening off or just a few hours alone. The only form of self-care I had known was relying on him to help carry my burdens so I could catch my breath.
Now, for the first time, I was shouldering that weight alone. He couldn’t cook for the kids, drive them to their activities, or manage their appointments. He couldn’t do the laundry or tidy up. He couldn’t be left unattended.
This was hard on me felt like the most selfish thought to entertain, especially when my husband bore the brunt of the struggle. He had always been the provider, managing not just our finances but the household as well. Sure, he wasn’t perfect at those tasks—he often left clean laundry crumpled in baskets and never quite mastered the dishwasher—but he did them. He took out the trash, shoveled the driveway, and changed light bulbs.
“You’ll get there,” I reassured him after each setback. But until he did, the responsibilities fell to me.
Your daughter is concerned about you, the social worker had said. I’m realizing that to be a better caregiver, I must also take care of myself. My husband is improving. He’s preparing to return to work and start driving again. We’re figuring out how to adapt our home with items that accommodate his needs, like clothing he can wear easily and shoes that support his ankle. We’re sorting out practical solutions for everyday situations, like deciding between using an umbrella or a cane in the rain. We’re working through it.
I’m working through it.
I want the kids to feel secure about their father, but I also need to ensure they don’t have to worry about me. I’m decluttering, simplifying our meals, and encouraging the children to help. They’re sorting through their belongings, packing their lunches, and taking on small chores around the house. They’re old enough to contribute.
“I wish things would just go back to normal,” my ten-year-old said, tears in her eyes. I took her hand and squeezed it gently.
“We just need to hold on,” I replied. “Normal will find us again.”
For more insights on similar experiences, check out this post here. You may also find valuable information from Make a Mom and CCRM IVF, excellent resources for pregnancy and home insemination.
In summary, navigating the challenges of caregiving while dealing with a loved one’s illness is complex and often overwhelming. While focusing on their well-being, it’s crucial to prioritize self-care to maintain balance and support the family effectively.