1. Gerber, Lois BSN, RN


You can support a family member's treatment plan without taking charge.


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My cell phone pinged. My daughter's name flashed on the caller ID. I'd been expecting Debbie's call since yesterday and had lain awake for hours overnight worrying. A biopsy of a small lump in her chest had revealed Hodgkin's disease. For several days she'd been awaiting the results of the PET scan.

Figure. Illustration... - Click to enlarge in new windowFigure. Illustration by Janet Hamlin.

My fingers trembled as I took the call.


"It's stage IV, Mom."


How could this be? She was 50 years old, outside the usual age group for this diagnosis.


"That stinks," I gasped. As a home health care nurse who'd worked with patients with life-threatening illnesses and their families, I knew my words were not what she needed to hear.


"Are you still there?" Debbie asked. Her voice cracked.


"Yes. It's just taken me a minute to get my head around this. Tell me everything."


And she did-the details of the PET scan results, the oncologist's serious but compassionate way, and the panic she felt hearing the news. Her voice sounded stronger the longer she spoke.


"The odds are in my favor," she said. "I need 12 treatments. I'll do my part to beat this."


I hated that I lived over 1,000 miles away.


"I'll come," I told her. "We can go anywhere in the country, find the best research center."


"The virus. It's too risky for both of us. Your age, my compromised immune system. I want to stay close to home. Dan and I need to work this out by ourselves. I'd worry too much about you if you were here."


I choked up as it sunk in that I wouldn't be a major player in her treatment plan.


"Okay," I said finally, "but I'm here for you all the way."


At that moment, and in the coming months, I forced myself to follow the advice I'd given families as their nurse. Like Michael M., whose 76-year-old widowed father was diagnosed with stage II laryngeal cancer. The three of us had talked about how Henry's laryngectomy would affect his speech, breathing, and swallowing. Plans were in place for him to spend a few days in rehab after hospital discharge to learn to take care of his stoma and speak using the electrolarynx. Then I would follow him at home as his nurse care manager.


One afternoon a week before surgery, Michael and I sat at his father's kitchen table. Henry slept in his recliner in the den.


"Dad refuses to move in with me after rehab," said Michael. "He wants to stay in his apartment and hire aides to help him. He can afford that, but why doesn't he want to stay with me? He won't talk to me about it. It's a huge surgery."


I sighed. "Yes, it is. Lots of changes, especially learning to take care of the stoma and use the voice simulator. But his plan is well thought through. What do you think about letting him try?"


Michael bit his lip. "I'll go along. It hurts, though."


I laid my hand on his arm.


Moments later, Henry joined us in the kitchen. "I half heard you two talking. You know I'm not a man for words, and I want to say this just once." He looked at Michael. "I appreciate you wanting me with you. But I need my space. I worry I'd require so much from you that you would become resentful. I'd do things to please you even if I didn't feel like it." He shook his head. "I need to focus on getting well, not fitting into your household."


"All right, Dad," Michael said. "Maybe later on, you'll come for a few days?"


"Maybe," Henry said. "For sure I'd like you to visit."


"That I'll do," Michael said.


Once Henry was home, I taught him and his aide how to care for the stoma and supported his efforts to learn a new way to communicate. Michael and Henry's relationship grew closer, partly because of the respect Michael showed his father. Family relationships can be like that-periods of misunderstandings and hurt feelings mixed with love and caring.


I thought of Henry and Michael as I hung up the phone with Debbie. My challenge was to follow, not lead, my daughter and her husband as they faced this crisis together. Like Michael, I would be content to be a team player, not the captain of the ship.


Debbie's six-month treatment plan began with a PICC line insertion. Chemo was every other Wednesday. She and I talked, texted, or had FaceTime conversations several days a week. Some problems were small, like delayed appointments; others were important, like her 10-pound weight loss and managing the side effects of the chemo. After four rounds of chemotherapy, a PET scan revealed all lesions had cleared, but two additional rounds were needed to complete the treatment regimen.


The day her oncologist pronounced her cancer free, we celebrated with virtual hugs. Soon we'll get together. I'm excited. We have lots to talk about.