When someone is diagnosed with cancer, there’s typically one family member or close friend who assumes the role of primary caregiver. But what happens to everyone else in their lives — parents, adult children, close friends — who want to support both of them? What are their roles? How can they help each person cope?
It’s a common problem for families, say Memorial Sloan Kettering social workers Linda Mathew and Carolyn Fulton. Though only one person is undergoing treatment and, typically, one other person takes on the daily routines of doctors’ appointments and other aspects of care, everyone’s lives are thrown for a loop. “It very much becomes a family illness,” Ms. Fulton says.
You might not be the primary caregiver, but there are many ways you can assist both your loved one with cancer and the person caring for him or her. “If you are part of a family and there is one individual who needs support, you are a caregiver,” says Ms. Mathew. “It’s about redefining what the word ‘caregiver’ means.”
And even if you’re on the periphery, you can also feel the stress that cancer can cause. “If you have a loved one facing cancer, you’re assisting with the caregiving — whether you’re the primary caregiver or not,” she adds. “You can definitely feel the same emotions of helplessness and burnout.”
Ms. Fulton and Ms. Mathew offer these tips to help ease the strain of caregiving for everyone.
Communicate, Communicate, Communicate
Just because there’s an illness in the family doesn’t mean that the way you talk with one another needs to change. If you openly discussed your worries, hopes, and needs before cancer entered your lives, there’s no reason that should stop.
By the same token, if your family doesn’t have an easy time tackling difficult topics, the toll illness takes on every family member can send that avoidance to the extreme.
“Every family is unique in their own way of relating,” says Ms. Fulton. “You have to first understand what currently exists as far as how people talk in this particular family, and then based on that, how are they going to talk about needing to help both the patient and the primary caregiver? You can’t expect to do it in a way that’s not going to work for your family.”
The most important first step is to get everything out in the open — and everyone on the same page. Both the person with cancer and the primary caregiver need to express what they want, need, and expect from other friends and family members who want to lend a hand.
Ms. Fulton gave the example of a mother who wanted to help her young-adult son deal with his illness — without stepping on his new wife’s toes. Open discussion within the family helped them all define who could fill what roles, allowing both mother and spouse to be there for the man they loved.
“It goes back to the patient and the whole family having a dialogue together — an honest dialogue,” says Ms. Mathew.
Consider Your Family Dynamic
In most families, people stick to certain roles — someone coordinates the kids’ calendars and keeps up on car maintenance while another cleans the house and pays the bills. But you might find that the person who does the lion’s share of running the household is no longer able to do it, whether it’s because he or she is sick or is supporting the person who is.
“Family systems have a certain way of functioning,” says Ms. Fulton. “When illness comes into the picture, that gets interrupted and everything sort of moves around and gets disorganized.”
Often, an easy way to help both the sick person and the person providing care is to offer to pick up the slack, whether that’s a weekly run to the grocery store or bimonthly housecleaning.
You may also bring some relief to a caregiver just by asking if he or she needs help. It can be hard to notice that you’re overwhelmed when you’re in the thick of caring for an ill person — and an offer to help can provide a wake-up call. It can also give the person permission to let go of some of the burden.
“The person in the primary caregiver role might feel that if they give something up, they’re not living up to that perfect ideal,” says Ms. Fulton. “They may think, If I start getting people to help me, it means I can’t do this on my own. So it’s a matter of acknowledging how great they’re doing but at the same time letting them know that it’s not uncommon to need help.”
Manage Your Expectations — and Theirs
It’s also important to talk about what the person with cancer and his or her caregiver expect in terms of support. Does he or she want someone to come to all doctors’ appointments and treatment sessions or prefer to go alone? Does the caregiver want to take a night off and have some solo time?
It seems like an obvious discussion to have, but things often go unsaid in the chaos that a cancer diagnosis can inflict. Talking about it can often eliminate unnecessary tasks from a caregiver’s life — sitting in the waiting room while a patient undergoes treatment, for example, when the patient would actually be just as comfortable alone.
It can also relieve some of the burden of guilt that comes with feeling like you’re not doing everything you possibly can for the person you love. With caregiving, “there’s a lot of guilt,” says Ms. Fulton.
Having permission to share the weight of providing care can bring relief to everyone. “The caregiver needs to say to the patient, ‘I want to help you, but there are going to be times I need support,’ and the patient needs to understand that,” says Ms. Mathew. “It’s different when you actually hear it as opposed to assuming it.”
Get Professional Help
Memorial Sloan Kettering offers a variety of support groups for caregivers, family members, parents with cancer, and more. Talking to a social worker can help highlight areas that you may not realize are causing issues within your family.
“Our role is helping patients and all of their caregivers navigate the types of conversations” mentioned above, says Ms. Fulton. “Social workers at MSK are not only here for the patient — social work and counseling and psychiatry are for the family too.”
Often, when they start talking about their situation with professionals, “caregivers will say, ‘Oh, there are all these people reaching out and saying we want to help,’ and we can help them figure out how to fit those people into their lives,” says Ms. Mathew. “We offer a place where you can actually start that dialogue.”
Social workers can also help everyone in the family realize that they’re all in it together. “We’re empowering the patient to express their needs and wants, but we’re also empowering the other people that are in that family and helping them to realize that they are important and that they also have a voice,” says Ms. Fulton.