Caregivers provide much needed practical, emotional, and physical care for you when you’ve been diagnosed with non-Hodgkin’s lymphoma (NHL). In fact, you probably couldn’t do it without them. In many cases, caregivers are family members who are new to the role. Helping them cope with their responsibilities, while taking care of both you and themselves at the same time, takes getting used to.
When you are diagnosed and treated with cancer, the whole family is impacted.
“Routines are disrupted, roles change, even logistics like who used to cook and pay the bills gets redistributed, plus all the emotions that come along with all that,” explains Kelly Giles, MSW, LICSW, an oncology social worker at the Dana-Farber Cancer Institute in Boston.
It’s important to work as a team to smooth the journey for the patient, family members, and any other caregivers, and it’s helpful to have tips and resources to share with your caregivers so they take the best care of you – and themselves.
Tips for helping your caregiver
There are many different ways to be a caregiver. Caregivers are not only there to support you physically and mentally, but they also offer such organizational help as meal prep and rides to treatment, as well as informational support when they serve as a second pair of ears at appointments or help gather facts about your illness, medications, and a treatment plan. They can also serve as a sense of affirming and belonging to a community that cares about you. Some caregivers may serve as cheerleader, while others offer a shoulder to cry on.
Different people can fill all these roles after diagnosis, Giles says. After all, “everyone has their unique strengths.”
“Let people help you,” she says. They may not know how to provide help, so offer them a concrete task, like taking you to a doctor’s appointment or coming over for a game of cards. This will give you and your main caregiver some relief. “The more support, the better.”
If your family member is your caregiver, it’s important to keep lines of communication open, she says, and to set your illness aside at times. Occasionally, “put discussion of medications and appointments on hold and just be a partner or parent and child and enjoy time together not revolving around cancer.”
Encourage your caregiver to seek support from social workers at your cancer center or hospital to voice their own worries, concerns, and fears that they may not want to share with you. “Social workers are there for the family, not just the patient,” Giles says.
Make sure your caregiver takes care of themselves so they don’t burn out. “Encourage them to get enough sleep, exercise, and continue going to their book club or whatever helps them feel connected and centered in their lives.”
Available resources to share with your caregiver
There are many resources available both online and in person for you and your caregivers when you have NHL. Start by asking your cancer center whether there is a support group specifically for caregivers.
Online support groups, forums, and chat rooms can also be helpful because they are available 24/7. Post a message in the middle of the night and you may get immediate answers from someone in the world who also can’t sleep but shares your worries and concerns. Caregivers may find this connectivity useful as well.
The Leukemia & Lymphoma Society has information specialists and numerous online resources that can help both you and your caregiver deal with NHL. The society will link you as well as your caregiver with a trained peer volunteer. It has a community of caregivers, where they can chat with others and share their experiences. Plus, there are family support groups for when the caregiver is a relative.
Another tip: create a strong support community. Sign up for personalized social networks like Caring Bridge and MyLifeLine where cancer patients and caregivers can create a community of support with family and friends. You can share updates on what is happening throughout your treatment, receive supportive messages, and coordinate help by organizing meal deliveries, rides, and visits through these sites.
Other resources include: