Ten years ago, Shelley Frisbie’s husband received a diagnosis of metastatic cancer and was told he had six months to live. Shelley and her husband immediately faced immense urgency and uncertainty. But with guidance from Cancer Commons founder Marty Tenenbaum, PhD, Shelley soon had a list of top resources, doctors, and medical institutions to consult for help with her husband’s case.
“I now had a focus and could start doing something productive,” said Shelley, who later joined Cancer Commons as CFO and COO. “Everyone facing cancer should be given the empowerment that Marty gave me 10 years ago, and I am grateful now to be part of the organization, providing this kind of support every day to patients and to caregivers.”
Shelley’s caregiver experience is shared by so many people who reach out to Cancer Commons for guidance on their loved one’s cancer treatment. So on May 18, we presented a live webinar to discuss the unique challenges these caregivers face.
Featuring our Director of Patient Services Deb Christensen, MSN, APRN, AOCNS, OCN, this was the second event in the Pat Looney Educational Series for Client Empowerment—a series of webinars that provide critical information to people dealing with cancer.
Being a caregiver “can be very complex,” said Mike Looney, whose family sponsors the series in memory of his wife, in a video interview shared during the webinar. “It’s important that the caregiver both stay on top of what’s going on with their loved one and also pay attention to themselves so they can do an even better job for their loved one.”
Here, we are pleased to outline the top highlights from our May 18 event, which drew participants from across the U.S. We hope this information will help others navigate the caregiver journey.
A video of the entire webinar, You’re Not Alone — Validating the Caregiver Experience, is also available to view and share with anyone facing cancer alongside a loved one.
Understanding the Caregiver Perspective
“The caregiver experience is a universal human one, and yet it’s a profoundly personal one as well,” Deb said in her opening remarks. Deb is an oncology nurse and an expert nurse navigator specializing in cancer. “Although your journey is unique, there are others walking this path with you.”
In fact, 17 million adults are living with cancer in the U.S., and many receive support from either professional caregivers or informal caregivers, such as family members or friends. As Deb outlined, a 2015 survey conducted by the National Alliance for Caregiving suggests that many informal caregivers face immense stress, with nearly 40 percent of spouses of cancer patients in the U.S. experiencing depression, and many experiencing work disruptions, financial insecurity, and health problems of their own.
Those findings were echoed by a survey of caregivers recently conducted here at Cancer Commons, Deb said. Our respondents typically reported that, along the timeline from diagnosis through treatment to end-of-life care, the end-of-life period was the most challenging. Respondents also reported challenges while helping a loved one deal with treatment side effects or cancer recurrence.
To shed further light on the caregiver perspective, Deb shared video interviews of some of Cancer Commons’ clients.
“We never planned for this, not at all,” said Mel of his wife’s diagnosis. “So am I a caregiver? Yes, I am, but I’d rather just call myself a dedicated spouse.”
Mel’s hesitation to identify with the “caregiver” label was echoed by other interviewees, including Mike. “I didn’t really think of myself as a caregiver,” he said, “but at some point I really began to feel like a caregiver. I was really thinking about what Pat was eating, how she was sleeping, when our next appointments were. In some ways I loved it; it brought us closer together.”
Resources for Diagnosis and Treatment
When a loved one receives a cancer diagnosis, many caregivers’ initial concerns revolve around making time-sensitive treatment decisions. Deb told webinar participants that she highly recommends that caregivers visit the websites of the National Cancer Institute and the American Cancer Society to build foundational knowledge.
Next, Deb said, “Know your options. I can’t stress this more.” She typically encourages people to ask their doctors about molecular profiling, which identifies specific mutations in a patient’s tumor that could help shape their treatment plan. She also recommends seeking additional medical opinions to ensure every relevant treatment option is considered.
Additionally, Deb discussed how important it is for patients and caregivers to identify and understand their personal goals for cancer treatment, according to the “Three C’s”: curing the disease, controlling the disease, and providing comfort.
“It can be such a gift to know what your loved one wants and to align your path with theirs,” Deb said. “You may make a different decision and support your loved one differently if you know that the goal is just for comfort or just for control of the disease.”
Overall, Deb stressed the importance of making a cancer care action plan—one of the main services Cancer Commons provides. As an oncology nurse, Deb said that she has seen caregivers and patients experience high levels of distress at initial diagnosis. “But what I noticed is, after they made some decisions and had a plan, they had something to focus on. Those anxiety levels began to normalize and recede.”
Deb’s deep experience and expertise enable her to help cancer patients and caregivers navigate every step of their cancer experience. She is also is keenly aware that caregivers benefit immensely from sharing information with each other.
To that end, much of the webinar focused on insights from the caregiver interview videos shared throughout the event. Here are just a few highlights:
Gather a team: Caregivers often have support from other loved ones who can form an effective team. Highlight each other’s strengths, and start with what you know you can do.
When Cancer Commons client Sharon’s niece Lauren was diagnosed with a brain tumor, the family had a matter of days to make pivotal treatment decisions. “We really collectively started to work together as a family,” Sharon says. With a background in science, Sharon helped sort through treatment options, including researching clinical trials and seeking second opinions from other institutions.
Align your goals: Align your caregiving goals with what is important to the person with cancer. Jessica, a caregiver for her wife, said that early discussions of her wife’s wants and wishes were difficult but vital.
“What was important to her? …was it being healthy or being able to walk? It’s different for everybody,” Jessica said. “For me, what was important for my wife was having all that dignity and to be able to express what she wanted and to be able to help her fulfill that…I take a lot of pride in taking care of her.”
Allow your community to help you: Janet, a care partner for her 37-year-old son, said that she benefitted from learning how to accept help from others. “I said, ‘I got this, I can do this,’ ” Janet said. “Then one of my friends said to me, ‘no you don’t.’ ” That friend offered to cook meals for Janet and her son. “I let go and I let her do that,” Janet said. “It felt so good because meal planning and prep was challenging.”
Jessica’s family also benefitted from receiving help with cooking. “Not having to worry about dinner was a big deal for me because it actually meant that I could sit down and eat dinner with my family,” she said.
Think outside the box: Mindy, a caregiver for her mother-in-law, discovered a unique way to unify her family, especially those who lived farther away: a weekly Pilates class via Zoom. “I got all of her nieces and cousins from all over the world to participate. We got her exercising and she would be so excited to see everybody,” Mindy said. “It was a great morale boost…and it served me, too.”
Take care of yourself: Nearly all interviewees emphasized the importance of taking care of oneself. “If I can’t take care of myself, I’m no good to my son or my grandchildren,” Janet said.
Mike said that caregiving can “become pretty taxing for people, especially over long-term periods of time. They kind of lose themselves…they forget about who they are and what their physical needs are, what their mental needs are, what their emotional needs are.”
Jessica said she found herself experiencing burnout as a caregiver. “We all have those moments where we break down, and that’s perfectly acceptable,” she said. “You can’t dip out of an empty bucket, you have to fill it up some way.” Jessica said that she and her wife benefitted when she made sure to take small breaks, find moments of normalcy (painting her nails, for instance), and making sure her own basic needs were met, such as drinking enough water.
Mindy benefitted from time with friends. “I created a little bit of a care group, a circle for myself so that I could re-energize myself and be present for my mother-in-law,” she said.
Keith, a caregiver for his wife, benefitted from spirituality and companionship. “You need to have somebody to talk to” about your frustrations, especially because it may not be appropriate to ask the person you care for to provide that kind of emotional support. “We’re religious, so I put my faith in the Lord, too, and prayed.”
Neeraj, a caregiver for his wife, said that he and his spouse have benefitted significantly from consulting a meditation expert and meditating every morning and evening.
Deb also recommends that caregivers speak with their doctors about anti-anxiety medications that could help them along their journey.
We Can Help
All of the caregivers featured in the webinar reported that they benefitted from turning to Cancer Commons for clarity on their loved one’s cancer care options. At any step of the caregiver experience, Cancer Commons is available to provide support—but the sooner the better.
“The time for a backup plan is before you need it,” Deb said. “We encourage you to reach out early to make a plan…We are there to help make the journey easier for family caregivers: for daughters to be able to be daughters, mothers to be mothers, and husbands and wives to be spouses.”
The next webinar in this series will focus on brain cancer and other central nervous system cancers.
Meanwhile, we invite anyone facing cancer alongside a loved one to sign up to receive one-on-one help from our compassionate experts. We are here for you.