Being a caregiver to someone with cancer is tough. Here are five pieces of advice from rare cancer experts who have been there. 

By Gina DeMillo Wagner

Caring for a loved one with a rare disease can be emotionally and physically exhausting. And that’s certainly true for rare cancer caregivers. In 2016, the National Alliance on Caregiving released a report analyzing the experiences of people who provide care to loved ones with cancer. They found high rates of emotional stress, financial strain, and physical stress due to providing medical care at home and taking on tasks such as end-of-life planning. On the flip side, the Alliance also noted high rates of interpersonal and emotional connection between caregivers and cancer patients. 

Patients and caregivers can influence each other’s psychological wellbeing, which can have a positive effect on outcomes. That’s why it’s especially important for caregivers to seek support and practice self-care. We recently asked the leaders of TargetCancer Foundation, Jim Palma and Kristen Palma Poth, what advice they have for rare cancer caregivers. In addition to their professional knowledge, Kristen and Jim have personal experience caring for a loved one with rare cancer. Kristen’s late husband and Jim’s brother-in-law, Paul Poth, founded TargetCancer after receiving a cholangiocarcinoma diagnosis at age 37. 

Depending on the needs of the person with cancer, you may provide different types of support, whether it’s physical, emotional, or financial. But remember that you need support too. Here’s what Jim and Kristen advise:

Appoint your own support team

“It can feel impossible to take care of yourself,” Kristen notes, “so make sure there are people caring for you.” Cancer patients typically have care teams full of a variety of specialists who tend to specific aspects of their treatment. As a caregiver, you can form your own team. Think about who could best support you through this difficult time. This may include a therapist or counselor, a neighbor who walks with you, a yoga teacher or spiritual guide, someone whose job is to remind you to eat, an academic-minded friend who can help research treatments, the friend who knows your favorite coffee order and brings it to you without asking, a massage therapist or acupuncturist who helps keep your body in balance. Different people can fulfill different roles and support you in various ways, big or small.  

Prioritize and delegate

For a caregiver, the to-do list is never ending. In addition to physically caring for your loved one, driving to and from appointments, and handling household tasks, you might have to call insurance companies, negotiate with billing offices, research medical options, schedule appointments, pick up prescriptions, update extended family, and so much more. To ease the overwhelm, try listing your tasks in order of priority so that you don’t have to focus on them all at once. Put a star next to tasks that can be handled by someone else, whether it’s another family member, a friend, or by hiring a professional. When it feels like too much, let go of the low-priority items on the bottom of the list.

Read before you sign

“Pay attention to the forms you sign at hospitals and emergency departments,” Kristen suggests. You don’t want to have surprise bills landing in your mailbox. Some states have passed laws to protect patients from hidden charges. But in other places, you might be asked to sign something that makes you responsible for out-of-network bills you didn’t expect. When you aren’t sure what you’re signing, ask to take the paperwork home to read closely, or talk with a patient advocate and/or your insurance company. 

Be an extra set of ears  

A lot of information is shared at doctor appointments, and it’s easy for messages between the care team and patient to get lost in translation, Jim says. As a caregiver, you can help by keeping a notebook and jotting down any questions that come up between appointments. At the doctor’s office or hospital, take notes or record conversations so you can refer back to them for clarity.

How to answer the hardest question: “What can I do to help?”

When a loved one has cancer, well-meaning friends and family often ask, “what do you need?” But that feels like an impossible question to answer when you’re in the thick of it, Kristen says. “The truth is, we don’t always know what we need,” she says. 

One solution is to use the notes app in your phone to make a list of tasks you do on a regular basis: Walk the dog. Mow the lawn. Pick up groceries. Make dinner. Water the plants. Fold laundry. Load the dishwasher. Drop the kids off at school, etc. Then, the next time someone texts you and asks, “what can I do?” you can copy and paste from the list. 

Another tip: If people offer to bring you food, ask them to leave it on the doorstep so that you don’t have the pressure of hosting or socializing. Or better yet, designate one friend to coordinate meal deliveries so that you don’t have to think about it at all. 

Above all, remember that it’s okay to tend to your own needs even as you are caring for a loved one. It ultimately benefits the patient if you are rested and less stressed.    

For more resources about caregiving and living with rare disease, visit the Know Rare blog.