Imagine you are in your late 30s, and you’ve accepted a new job. It’s busy and there’s a lot to take in, but you’re excited as you begin your new role.
Then you get news, and your world changes overnight: Your spouse has cancer and will need to undergo treatment. You know they will need your help, but what, exactly, will be needed and how will you do it?
For two Seattle-area women, this wasn’t something they imagined — it was their new reality.
Stay as Organized as You Can
For Nicole Kerby of Shoreline, Washington, 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.”
Broaden Your View of Who a Caregiver Is
Like Kerby, Dana Boggess, now age 44, of Kirkland, Washington, was in the midst of a job transition when she and her husband Bill Niwa, 52, found out that he had multiple myeloma, a disease related to bone marrow.
Boggess explained they had several months to prepare for the stem cell transplant, which occurred in November 2017 at Fred Hutch. Boggess was able to use the time to adjust her work and other obligations so it would be possible to take Niwa to his clinic appointments and help him at home.
But still, when the weekly and sometimes daily clinic appointments began, Boggess admits the experience was often more than challenging. Like others who care for a loved one going through cancer treatment, though, she wouldn’t have had it any other way.
When asked to offer advice for new caregivers, Boggess said to lean into your own strengths and get rid of stereotypes you may have of a soft-spoken, selfless caregiver “type.” When you do this, you’ll be able to do what is needed to help your loved one.
She laughed a bit when she recalled a personality test she once took at her workplace. “I believe in the ‘carer’ category, I got a zero,” she said. Despite this, she took on the caregiver role her way.
Boggess believes strongly that asking good questions, listening and being a steady presence for that person are some of the best qualities a caregiver can have. Here are her tips:
- Don’t try to keep everything in your head. “I would get frustrated when I was surprised by something — but usually it wasn’t because no one told me. It’s because there is just no way you can keep all the information in your head and there are things you won’t be able to figure out.” To help manage this, Boggess recommends staying organized and taking lots of notes.
- Overstock your pantry and keep a variety of protein options on hand. Boggess said it helped to have multiple food options on hand for Niwa, because what he wanted or could tolerate could change from day to day.
- Focus on what you can control, not the outcome. Boggess said she didn’t allow herself to spend time worrying about the outcome of her husband’s treatment, which she had no control over. Instead, she focused her energy on gaining knowledge in order to avoid surprises whenever possible.
Resources for caregivers
- Fred Hutch Caregiver Guide: This guide covers everything from practical tips for caregiving and steps for applying to the Family Medical Leave Act (FMLA) to guidance with helping children cope when someone they love has cancer.
- National Cancer Institute’s Resources for Caregivers: Information to help caregivers caring for someone going through cancer treatment.
- American Cancer Society Caregiver Resource Guide: This guide includes a “Caregiving 101” section to learn the basics of stepping into this new role.
Cancer & Caregiving Series
November is National Family Caregivers Month, which expands the spotlight to encompass the army of caregivers who do everything from taking notes during medical visits and keeping loved ones company during long hours of chemotherapy to caring for them at home as they cope with side effects from grueling treatments. The series of articles from Fred Hutch News Service also includes:
- Self-care guidance for caregivers from seasoned caregivers.
- Advice for cancer patients on being your own best support and where to find community from other patients.
- Families facing the challenges of cancer caregiving as the population ages.
This article was originally published November 1, 2023, by Fred Hutch News Service. It is republished with permission.