How to Be a Caregiver

Maybe it wasn’t something you planned for: Your child’s diagnosis. Your parent’s dependence. Your partner’s recent accident. Maybe your loved one has managed their health conditions but now needs additional support.

Whatever the cause may have been, your loved one is now in a crisis — and you have become their caregiver.

If you have a lot of questions about being a caregiver, you’re not alone. At least 1 in every 5 people in the United States today cares for at least one person. That’s 53 million people who have found themselves wondering how to be a caregiver while keeping their own lives and health on track.

Nova Hodge, MSW, LICSW, is an oncology social worker at Mass General Brigham Cancer Institute. In her role, she assesses the psychosocial needs of both patients and their caregivers. Hodge leads two support groups: one for brain tumor patients and their caregivers, and another for couples living with advanced cancer.

There is no one-size-fits-all guide to caregiving. But there are some steps new caregivers can take to be as present and helpful as possible, while still taking care of themselves. In this article, Hodge provides guidance for caregivers and shares resources for caregiver support.

While the definition of caregiver is simple — a person who takes care of another person — examples of caregivers and caregiver experiences vary widely.

“[Becoming a caregiver] could mean you become an emotional support in a way that you hadn’t before,” says Hodge. “Maybe you become a physical support for a person who now has physical limitations they never thought they’d end up with. Or you might become the person who’s managing the household on your own where you never had to do that before.”

Through her work, Hodge sees both the unique, individualized relationship needs in a patient-caregiver relationship and the big-picture challenges that caregivers face. One aspect of cancer caregiving that can be difficult is that there’s rarely time to train or prepare for the role.

“People may become caregivers gradually or suddenly,” she says. “Either way is life-changing. Their day-to-day life is upended. Almost every caregiver needs support, and many put themselves last on the list — if on the list at all.”

No matter the nature of the role and relationship, though, there are a few key tips that can help your relationship be as successful as possible:

According to Hodge, communication difficulties are common in many patient-caregiver relationships.

“People might be fighting or getting frustrated,” Hodge says. “Caregivers may be unable to articulate their feelings because they don’t want to hurt the person they’re taking care of. Some patients may feel guilty because they have to rely on their caregivers so much; caregivers get upset that the patient isn’t relying on them. Patients have a need for ongoing independence, but their caregivers are worried that they’re going to get hurt if they do too much.”

Navigating these new relationship dynamics is difficult. Nova counsels caregivers and patients on communication to help them navigate these new dynamics. “And this is where better communication and problem solving come in, too. It’s the [answer to], ‘What are you going to do when you encounter this in the future? How are you going to remind one another that you’re in that place that can be tricky?”

When communicating with a loved one from a caregiving perspective, remember to:

• Invite honest conversation. Maintain an ongoing dialogue about your relationship and create a safe, respectful space where both of you can discuss your feelings, thoughts, and needs. Health crises can change your partner’s body and emotional state. Some romantic couples who have adopted a caregiver-patient relationship experience changes in physical intimacy. This is normal—and important to include in empathetic conversation.
• Maintain an open mind. Your loved one is going through major changes that may lead them to feel powerless or out of control. When you can, reassure them through words and actions that they are in the driver’s seat of their treatment plan.

Your loved one is your number-one priority as a caregiver. Often, this means self-care falls by the wayside — leading to caregiver burnout. This is a common theme Hodge sees in patient-caregiver relationships. “We often talk about giving caregivers permission to take care of themselves,” she says. “Sometimes our work is just encouraging the caregiver to be comfortable with the idea that they need help.”

Finding the right help can be difficult — but there are many resources available to support caregivers. The key, says Hodge, is to optimize what’s available. Some resources she suggests include:

• Government support. Caregivers may be entitled to resources provided by their local government or the federal government.
• Social services. Mass General Brigham’s social services help patients and caregivers cope with complicated life situations.
• Support groups for caregivers. Mass General Brigham offers support groups like those Nova leads. These groups may also exist on a local level.
• Lotsa Helping Hands. This is a care calendar website designed to help schedule support for those in need.
• CaringBridge. This is a personal health journal that helps patients share their stories and broaden their networks.
• Private foundations, such as the Ellie Fund
• The Healing Garden cancer support center.

There’s no how-to list when it comes to caregiving. But, Hodge explains, there is a key to being as effective as possible: “It’s the ability to ask for help. It’s having a routine and trying to stick to it so you can build in some self-care, even knowing you might have to do it at different times of day. That’s where flexibility comes in. Flexibility, and being open to learning how to communicate in different ways.”