K.J. Bannan Photo by Suz Redfearn

MANY CAREGIVERS COUNT DOWN the days until their loved one’s treatment is over. When that day finally comes, caregivers may be surprised to find themselves feeling unexpectedly anxious, melancholy or even worried. This isn’t unusual, though. 

The transition back to “normal” has unique challenges for caregivers and patients, says Jamie Jacobs, a clinical psychologist who works with cancer patients and their families at Mass General Cancer Center in Boston. 

“When the patient finishes treatment and everything is supposed to be hunky-dory and go back to usual is actually when patients and caregivers sometimes struggle the most because the focus is no longer in an acute crisis-solving mode,” says Jacobs. While the expectation is to pick up with life as normal, the caregiver is often exhausted, burnt out and fundamentally changed by their experiences, which can lead to conflicting emotions, Jacobs says.  

There are ways to adjust to this transition. 

Acknowledge distress. Some studies have shown that about half of family caregivers struggle with fear that their loved one’s cancer may return after treatment—and sometimes caregivers even have greater fear of recurrence than the survivors themselves. Fear can manifest in many ways, including as a sense of hopelessness, a lack of focus or an inability to make plans. Some caregivers feel guilty that they have these emotions in the first place, especially since they feel they should be grateful that their loved one is well. Jacobs encourages caregivers to allow themselves to feel the range of emotions, including the more negative feelings. “You don’t have to be positive all the time. I think a lot of people say, ‘Just think positively’ or ‘Maintain a positive outlook.’ But we find that that’s not actually very helpful.”  

Talk to your loved one about your feelings. Caregivers often feel the need to put on a brave face to protect the person who is sick. Once the emergency of cancer has passed, caregivers may continue what is essentially a lie by omission. “It’s a phenomenon we call protective buffering, where patients and caregivers hide their deepest fears, worries and concerns from each other for fear of upsetting the other,” Jacobs says. “But in reality, everyone’s walking around with the same worried thoughts.” By talking, you can help each other heal.  

Give yourself permission to enjoy life. Caregivers may find themselves needlessly “waiting for the other shoe to drop,” Jacobs says. “When those uncomfortable emotions and distress become so overwhelming that it’s interfering with the caregiver’s ability to live and to engage meaningfully in life, it’s time to seek professional support.” Caregivers may benefit from joining a support group to share how they’re feeling with others who have similar experiences, or from talking with a mental health provider or primary care doctor.  

Find more time for self-care. In the thick of caring for someone else, it’s easy to lose sight of taking care of your own needs. Now is your opportunity to refocus and recalibrate as you adjust to these changes. Use this time to explore activities and experiences—both new and old—that bring you joy and support your well-being. It’s even better if you and your loved one can explore these pastimes together. 

K.J. Bannan is a journalist based on Long Island. She took care of her mother, Pauline Bannan, for almost two years. Her mother died from lung cancer in 2019.