I Was A Reluctant Caregiver
I wasn't ready to lose my sister — or to care for her.
“That doctor needs a new boat,” I told my sister Mikki, after the oncologist said to come in right away.
“A chalet,” she said.
“An Island,” I said.
But we weren’t laughing when he said, “Adenocarcinoma, Stage 1.”
I belied my terror when I told her it would be ok. I didn’t say out loud that I wasn’t ready to lose her, or to be her caregiver. Instead, I told her it made little sense that she had lung cancer, as if that would make it disappear.
My sister never smoked, and she is healthy, she eats well, and only drinks at my house.
“I really shouldn’t,” she says when I offer her wine.
“Okay. It’s fantastic, but I understand, you’re driving.”
“I’ll have a little,” she concedes and holds her glass to me. I pressure her to drink with me. I try to make our world celebratory.
We grew up hard. Our dad was angry and our mom was mentally ill. She moved out when Mikki was 15 and I was 12, leaving us to fend for ourselves with little money and a bear who could be poked into a rage without notice. We shared a tiny bedroom, all of our clothes and every secret we ever had. So when she thought there was something to fret about-our parents were divorcing, our mom was going off for shock therapy, our dad was on the warpath-I paid attention. When she waved her hand and said, “I don’t have cancer,” I had no reason to doubt her.
But she was wrong this time, and I was in a quiet panic. Since the lockdown in March, my girls were both schooling at home. My husband had taken over my home office and we had a dog who needed to be walked a lot. When I heard I had a sister with a deadly disease as well, I freaked.
My oldest daughter is 21 and my youngest is 11. I adore them, but even more now that they make their own lunches, wipe their own tushies and cut their own nails. I learned to take care of myself early on. I expect the same from others. More than one pet for me is too much, more than one child was a hurdle I narrowly cleared. I never asked for help.
Mikki doesn’t have kids. She got a master’s degree when she turned 50, I was the gala-chair at my daughter’s high school and I did second grade again. She’s never had to care for anyone the way she needed me now. I worried about her expectations and my ability to help her.
It didn’t start off well. Upon leaving the oncologist’s office, I drove her to a Mexican sushi place with outdoor seating. The Los Angeles air was filled with smoke from local fires, and there was a deadly respiratory pandemic. We agreed; now that she had lung cancer, she shouldn’t be outside. Then we sat at the picnic table and ordered spicy tuna rolls.
Every day we talked and texted about her surgery. I told her to come to my house afterwards. Her husband had never had children either. No getting up in the middle of the night to give medicine or clean vomit off the kid and the carpet. No soothing back rubs because of bad days or ouchies, and I assumed there would be a lot of ouchies after lung surgery. But she insisted on going home.
I was happy to visit her in the hospital where carers abound, but two days after her surgery, the nurse asked what she was still doing there.
“She had part of her lung removed,” I stammered. Then he asked my drugged up sister if she was ready to go home.
“I guess so, if you need the bed,” she slurred. I wasn’t ready for the heavy lifting of her care. But COVID-19 was still raging, so I agreed she might be better off at home.
That first week was hard, and thankfully for her, not at all memorable. She was shedding anesthesia and on pain pills every four hours. I thought the nurse said every four, but the bottle said every six. The pain was so bad; I was doling meds at three hours and forty-five minutes. I wasn’t trying to kill her, just the pain.
Driving back and forth between our houses was distracting and once, I pulled over and had a meltdown imagining my life without my sister.
Most people whose families shattered will tell you they were unusually close with their siblings. We don’t know how to fight, so we just don’t. She only tortured me a little. Once she told me some dirt was crushed-up Oreos and she never let me wear her Sbicca wedges, even after I’d loaned her my angora sweater, the one I bought with my first paycheck. She wasn’t maternal when I missed our mother. It wasn’t fair to ask her to fill those shoes, and I didn’t.
For several weeks, she needed my attention. Her pain was terrible, and no news had come from the doctor. I mostly sat with her and walked her around her house. I gave her meds and brought lunches I thought she’d enjoy. The healing was up to her. All I had to do really was be there. It seemed like the hardest thing.
I was removing one of her bandages when she touched my arm and said, “Thank you.”
Thank you—as if she had to. Don’t sisters do this for each other? Something bad happens, families show up, right? She’d had a frozen shoulder the year before. I had postpartum depression twice. We’d never been a part of each other’s healing. Never before did we ask each other to be the mother we didn’t have. Now she was thanking me for being her family. It was overwhelming. I didn’t cry, just continued lifting bandages gently from her skin.
The call finally came; no more cancer. I’d dreaded losing her so badly my relief was pure, but also, she wouldn't need me as much. I couldn’t help but feel we’d both dodged a bullet.
No matter how different I am from my sister, without her, I traverse alone. She holds my memories, my secrets and the ability to be my hero. Without that, I don’t know who I am.
I hope she is healthy from now on. I don’t want to care for her again, or anyone really. But if she needs me, I will watch over her. I’ll clean up after her and give her as much medicine as she wants, save killing her, and I’ll make jokes about scary things and loan her my sweaters. She’s my sister, the only one I have.
A few days ago, I was running with my dog. He saw a Pug and cut in front of me. I was on the ground before I knew it. I don’t remember walking home and when I looked in the mirror I was missing an eyebrow and my face was turning black and blue. I called my sister.
“I’m coming,” she said when I told her the story. “I’m coming over right now.”
AARP offers an abundance of resources for caregivers so please check them out.