Being a parent with cancer: when your caregiver is your child

Being a parent with cancer: when your caregiver is your child

From the time of my diagnosis through the end of treatment, the person closest to me in space and time was my daughter. Not only had I never imagined having a serious illness, but I never dreamed that my teenaged daughter would be the primary witness to the slings and arrows of my struggle with cancer. I was learning what it means to be a parent with cancer.

My husband and I moved with our daughter to Chicago from Anchorage, Alaska, in 2011 because of my job. During our first year here, he had a full-time, one-year position. Jobs in our field--we’re both academics--aren’t easy to find, so when a position came up at ISU in Normal, IL, my husband applied. It was a perfect position for him and we knew that he needed to take the job even though it meant a long commute. He spends several nights there each week and telecommutes when he can. Our daughter was just getting settled in our new community, so we never considered moving to a halfway point.

My doctor sent me to the emergency room on a Monday afternoon in late August. My husband had left for work early that morning and I left my daughter at home so she wouldn’t have to endure an ER. As the unpopulated waiting room slowly grew to standing-room only and as the minutes became hours, I realized that I needed help.

I called the parents of one of my daughter’s friends, people I did not know well, and asked if they could take my daughter to their house to be with them, to eat dinner and do homework. I will be forever indebted to these folks, who are now good friends, for their willingness to step up and do what needed to be done.

After six hours of waiting, I was admitted to the hospital, my husband had arrived back in town, and my daughter was finally with him at home. I can remember how I felt that first night in the hospital with a clarity that still haunts me, but I have no idea how my daughter felt.

In conversations since then, the recurring theme for her was suspense. It took several days to get a diagnosis, so we didn’t have much to tell her. Though we could have told her about the possibilities that we had researched or imagined, our instinct was to not borrow trouble.

Unfortunately, this created a perception of dishonesty. She knew, as we did, that I was being treated with IV antibiotics for a severe infection, but when she came to see me in the hospital this initial diagnosis didn’t seem to hold much weight. Like us, she knew that an infection was not the entire story. Unlike us, however, she thought the truth was being withheld.


My daughter on her way to a "Downton Abbey" tea, stopping to Instagram.

Teenagers have the uncanny ability to look like young adults one moment and like children the next. When she came into my hospital room, my daughter was a little girl, if only to my eyes. The sight of tubes and the IV pole and the general paraphernalia of a hospital were intimidating. The sight of an IV in my wrist was overwhelming. As much as I wanted them to be with me, the terror in her eyes gave me the courage to send them away.

It was her introduction to having a mom with cancer. As the fall unfolded, she was there through two surgeries, long days of waiting for results of tests, diagnosis, doctor’s appointments, and treatment. My husband was home when he could be, and I rarely took her with me to appointments, but she was in my world.

I’m an emotional and expressive person even when I’m not dealing with cancer, but sometimes the emotions I felt would surprise me. After going to an orthopedic doctor for pain in my shin, I fell apart, full on sobbing. I picked her up from school about an hour later and she could tell I’d been crying.

The look she gave me, those vigilant eyes, “What’s wrong?” I didn’t know why I was so upset and it was impossible to comfort her. Though I said, “Nothing. I just got emotional after seeing the doc about my leg,” who knows what she heard?

My diagnosis was good, given that it was cancer, but the dual hells of treatment and an HMO made my life, all of our lives, a tilt-a-whirl. Unpredictability and struggle were the themes. From being denied a second opinion with a local expert to side-effects of treatment, I was barely coping.

Meanwhile, I still worked and my husband still worked and commuted. I can’t speak for him, but work was my salvation, a place where things made sense and were predictable and where I was empowered.

My daughter, however, was a victim of this chaos and its deprivation. There was not much energy or attention or emotion left over for her at the end of the day. How do you make space for conversations about how much you hate math or about how irritated you are with a friend when your mom is barely coping and your dad is commuting?

It didn’t dawn on me until about six months later, several months after we had found the Cancer Support Center, that my daughter was a caregiver. I go to a support group and both of us go to relaxation classes. One day another cancer patient asked my daughter if she was going to the caregivers support group.

“You’re such a great supporter of your mom,” she said.

We never considered that she would go there since the conversation would no doubt have been too adult for her, but we were very grateful that the Center started a support group for teenagers at Homewood-Flossmoor High School in the spring. She met other kids whose parents had cancer. One kid had already lost one parent as was the sole caregiver for the other.

As I reflect back on last fall, I realize how much care and support my daughter gave to me. I had thought of her as a child that I needed to protect. I felt guilty about my neglect and the responsibility shoved onto her. I was keenly aware of the instability in her world because of my diagnosis and her father’s travel schedule. We had just moved and all of her friends were 3500 miles away.

Yet, all along she was there. It must have been hard, but she always asked about doctor’s appointments. When I discovered the Support Center, she wanted to come to events with me. She went to a cooking class with me and fully embraced my commitment to nutrition. She helped me find recipes, read labels, found and mastered a healthy pancake recipe.

My daughter has coped with being a child whose parent has cancer and has also coped as a child who is a caregiver. None of this is fair. From my point of view, it has been the worst part of having cancer. A child should not have to face the stress and fear, anxiety and dread, anger and exhaustion that come along with cancer.

The tables turned long before they should have. We expect our children to become our caregivers eventually, when we’re old and they’re adults. I never expected that this would happen to my teenager.

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