Caregivers know compassion is critical; staying organized is, too

Cancer & Caregivers series

Being your own caregiver during cancer
The challenges of cancer caregiving
Who takes care of the caregiver?

Stay as organized as you can

For Nicole Kerby of Shoreline, Wash., now age 40, it all began in January 2022 when her husband was admitted to the hospital and was diagnosed with a life-threatening infection. While there, physicians discovered his blood counts were abnormal, which suggested blood cancer.

“It was a real gut punch,” she said.

By early February 2022, Marc Kerby, age 50, was diagnosed with myelodysplastic syndrome.

“He wasn’t making enough healthy blood cells and was at risk for major bleeding and further serious infections,” she explained. “Getting a bone marrow transplant was the only possibility for a cure.” The couple went to Fred Hutchinson Cancer Center for treatment.

Just one month earlier, Kerby had taken on a new role as a clinical mental health therapist. At first, she tried to work and help her husband at the same time, but she quickly realized it was unsustainable. Fortunately, she was able to make arrangements with her work so she could serve as her husband’s full-time caregiver.

For patients receiving a blood or marrow transplant at Fred Hutch, it is a requirement that they have a caregiver with them 24 hours a day during treatment and for several weeks after due to the intensity of the treatment.

Kerby shared some insights that can help others who are stepping into a caregiver role:

• Learn to “roll with it”: Kerby’s husband received weekly care at Fred Hutch for about a year and a half. He has been in remission since July 2022, but has continued to be seen in order to manage transplant-related toxicities, including graft-vs.-host disease. Kerby said it’s important to be aware that the treatment schedule may vary.
  
  “We had some input, but sometimes, we just had to do what our care team said. Some weeks, we would need to come into the clinic every day. Others, maybe just a day or two. And sometimes, we would need to be there all day; other times, just a few hours,” she explained. “I can be a more rigid person, so I had to learn to be flexible and roll with it.”
  
  
• Stay as organized as you can: She also recommended having a planner and taking lots of notes as well as using a spreadsheet to track medications. “While I was a caregiver, my short-term memory was terrible — I called it my Swiss cheese brain. I would do things like walk into a room and have no idea what I came in for,” she said. “There is so much going on, but using a planner and spreadsheet gives you some aspect of control.” For those who prefer staying organized digitally, using your phone can be another option for taking notes.
  
  
• Don’t let your emotions build up. Caregivers can experience a range of emotions, including frustration and anger. “Someone said I should get some pottery and break it to help deal with it all! It was a short-term, Band-Aid fix, but it helped,” she said. “Having a physical outlet that is safe is a good idea.”