My phone rang, and I saw it was the school nurse calling. A knot tightened in my stomach as I wondered which child might be unwell this time. One child has asthma, which always makes him a likely candidate, but the youngest has a sensitive stomach, and the oldest was up late reading. As I answered, it was the school social worker on the line.
“I wanted to update you on your daughter’s day,” she said, and I felt a fresh wave of anxiety. Two weeks into the school year, their father had undergone his third surgery for brain cancer, leading to almost a month in the hospital. He had experienced a stroke, swelling in the brain, and a myelin injury that left his left side mostly unusable. Each time the kids saw him before he came home, he was still bandaged, with stitches and scabs covering his scar. He was battling depression, confined to bed and a wheelchair that scraped against his limp arm. He tried to put on a brave face for them, forcing a smile even when his eyes showed the truth.
During that first week back to school, I had many heart-to-heart talks with the kids about their dad. I explained what he was enduring at the hospital, shared his jokes, and when they expressed fear or sadness, I reassured them. “It’s okay to feel this way,” I said. “I’m scared and sad, too. But Daddy is doing well, and he’ll be home soon. We can be sad together.”
While I worried about their father, my greater concern was for their emotional well-being. I had spoken with school social workers before the school year and laid out a plan, but as we approached Thanksgiving, things didn’t feel “normal.” Daddy was still home. He couldn’t drive. Our meals were predominantly takeout, courtesy of friends and family. Our home was chaotic. He was relearning how to do everyday tasks, walking with a cane and leg brace. One day a week, a friend helped the kids get ready for school while we were at the hospital for treatments, only to return home at night without clear answers to their questions about their dad.
“It’s okay,” I reassured them. “Daddy has been living with brain cancer since before you were born.” I didn’t mention that we had chosen to start our family amid a terminal diagnosis, wanting to make the most of our time together. Our three children were born in less than three years, and I had always hoped their dad would be around long enough for them to remember him. Unfortunately, this surgery and its complications came just two months after our youngest turned seven.
The social worker’s concerned voice echoed in my mind as I braced for bad news. Was my daughter struggling in school again? Did she have a meltdown in class? Had she been worried about her dad’s fall the day before, which had led a friend’s mother to bring her home from practice?
“She’s worried about you,” the social worker said. “She says you’re having a tough time.”
Her words felt heavy. “What? Me?”
“Yes, she mentioned you seem overwhelmed.”
I forced out a laugh. “Well, yes…”
“Are you okay?”
I wanted to plead with her not to ask, but instead, I took a deep breath. “Things are difficult, but I’m managing.”
“I think it would be good to talk to the kids about it. It’s okay to admit you’re struggling.”
“I know,” I replied, wishing my daughter wouldn’t have to worry about me. It felt selfish to acknowledge my pain when my husband was the one suffering the most.
The social worker suggested ordering pizza for dinner, as if we weren’t already relying on it three times a week. I barely registered her kind words before I hung up, grappling with the guilt washing over me.
Truth be told, I was not okay. The weight of my responsibilities was overwhelming. Each night, I would lay a blanket on the floor in front of the TV and serve reheated meals, too drained to read bedtime stories or clean up the kitchen. My husband was not back to his normal self, but my inability to keep up with our usual routine was having a more significant impact on our family. After twelve years of caregiving, I had become adept at advocating for others, but I had never learned to care for myself.
That’s the challenge of caregiving. You prioritize the needs of others until you’re left with little for yourself. You can endure skipping showers, subsisting on leftover crusts, and surviving on minimal sleep. But eventually, something has to give.
When caring for someone with a serious illness, there can be expectations for improvement, but those may not come. The moment you decide to take a break could come with steep consequences.
As for self-care, my understanding had been limited to asking my husband for a date night or some quiet time. The only way I had known to recharge was to lean on him, my partner, to help shoulder the burden.
Now, I found myself alone with that weight. He couldn’t cook, drive, or manage errands. He was unable to clean or tend to the kids.
“Your daughter is worried about you,” the social worker had said.
I’m learning the importance of taking care of myself as a caregiver, and my husband is gradually improving. He is preparing to return to work and drive again. We’re figuring out how to adapt our lives, like discovering one-handed tools and finding clothes that fit his needs.
I’m working on it.
I don’t want the kids to fret over their dad, but I also need to reassure them that they don’t have to worry about me. I’m decluttering our lives, simplifying meals, and encouraging the kids to pitch in by sorting their belongings and helping with chores. They’re old enough to help.
“I wish things would go back to normal,” my ten-year-old lamented, and I held her hand tightly.
“We just have to hang in there,” I told her. “Normal will find us again.”
For more tips on navigating these challenges, check out this post on home insemination and how to manage family dynamics during tough times.
In summary, the journey of caregiving through illness is fraught with emotional and practical challenges. It’s essential to acknowledge your feelings while also finding ways to support your loved ones and maintain a semblance of normalcy in family life. With time, patience, and a willingness to adapt, the hope is to rebuild and find a new rhythm that works for everyone.