Allison J. Applebaum, Ph.D., will be the first to tell you that a family member’s cancer diagnosis can knock your whole world off-kilter. As the director of Memorial Sloan Kettering Cancer Center’s Caregivers Clinic, Applebaum specializes in helping people who are looking after loved ones with cancer. She knows well how conflicting the whole process can feel.
“One of the first things someone will say to me at the clinic is, ‘This is probably going to make me sound like an awful person…’ before sharing a completely valid frustration or emotion,” Applebaum tells SELF. “There’s a lot of guilt around, ‘I’m not the patient with cancer. My needs and feelings don’t matter.’ Every aspect of their own distress, whether depression or anxiety or uncertainty, comes with an added layer of judgment towards themselves for having those feelings.”
The truth of the matter is that pretty much anything you might feel when grappling with a loved one’s illness is likely completely normal. But that doesn’t mean it always feels normal. For reasons you’ll read below, this can be especially true when a loved one gets a lung cancer diagnosis. Here, SELF talked to Applebaum and three people who have served as caregivers to loved ones with lung cancer to validate common emotions that can happen in this tough time.
Anger and frustration
Kelly M., 41, had always had a strained relationship with her father, but when he was diagnosed with lung cancer in February 2018, she became his primary caretaker and advocate. “At his request, I took over every aspect of his life,” Kelly tells SELF. She took him to every doctor’s appointment, managed his treatment, and apologized to medical staff for his behavior when necessary. In the end, she basically lived in the I.C.U., sometimes staying there for up to 20 hours a day, leaving only to pick up her kids from school, eat, and shower.
It almost goes without saying, but it was one of the toughest periods of Kelly’s life. “I felt frustrated and angry all the time,” she says. “At my father, at the doctors, at the nurses, at the medical care. At everything.”
According to Applebaum, feeling upset with both the caregiving role and the patient is incredibly common, but people in this situation often have a hard time allowing themselves to feel anger freely and without shame. It’s uncomfortable to feel mad at someone going through something truly unimaginable, like lung cancer, but try to cut yourself some slack. “We’re human,” Applebaum says. “You were put into a situation you didn’t anticipate and might not have the skills or the capacity to handle. That’s frustrating.”
Plus, all the things that have always been rage-inducing about the person you’re caring for usually don’t go away just because they get sick. “[My dad and I] had never been good communicators with each other and had very different political leanings,” says Kelly. That dynamic was only amplified in the close quarters of a caregiving relationship. “But I didn’t want to add anything to his difficulties, so I would have to bottle up what I was dealing with and stay quiet,” she says.
This is a fair coping mechanism. What’s important, Applebaum notes, is that you have somewhere to vent these feelings. For Kelly, that was her husband and friends. For you, it could be any number of things, from leaning on those close to you to trying therapy to relying on a creative outlet like journaling.
Blame and guilt
After her mother’s lung cancer diagnosis, Anika R., 28, struggled with blame and resentment that made her feel “like a monster,” she tells SELF. “I spent my entire life trying to get her to quit smoking, telling her she’d get cancer, and then what happens?” Anika says. “I couldn’t help but think, ‘I told you so!’” That line of thought caused a lot of guilt that’s stayed with Anika since her mom passed away a year ago, she says.
Applebaum says this kind of thought is inevitable when a disease can be so directly linked to behavior, like smoking sometimes (though not always) is to lung cancer. “Of course that would cross your mind,” she says. “It’s about normalizing it and moving forward. Focusing your attention on why something happened is actually allowing one to avoid the challenges of the present moment.” To combat this, Applebaum urges people in this situation to ask themselves, “What can I do with those feelings now?”
For some people, the blame turns inward. Long after her father’s death, Kelly still wrestles with how things unfolded during his last few weeks: What could she have done differently? How had she contributed to his suffering? It’s something she says she’s still working through, especially with the help of a therapist.
“I didn’t realize how I would carry that guilt and shame with me so far into the future,” Kelly says.
“A lot of caregivers get thrown into this [with] no choice at all,” says Applebaum. “With that comes a sense of powerlessness.”
That was certainly true for Anika, who was 26 when her mother got sick and the only family member who still lived close enough to be a caregiver. “I had to put my life on hold and completely reorient myself. I obviously was happy to do it for my mom, or as happy as you can be given the circumstances, but having everything so entirely out of my hands sucked,” Anika says. “My life disappeared overnight, and there was nothing I could do.”
Michelle H., 39, uprooted her life to help her dad with caregiving duties when her mom got lung cancer. “I sold my house and moved back home to be with my parents in the last months of her fight,” Michelle tells SELF. Though this was ultimately Michelle’s choice, it was far from easy on her emotions. “I have lived in cities ever since I graduated from undergrad. To go from that to moving back to a town of 700 people with your parents when you’re almost 40, I worried people thought I was a loser or that I had lost my job.”
Then, of course, there’s the fact that it’s excruciating to feel helpless to someone else’s suffering. “You feel like you’re going to break and like nothing you can do is right,” says Michelle. “You just can’t take the pain away.”
Applebaum says that a lack of control is a big trigger point for a lot of caregivers. She tries to help them recognize where they do have control, even in seemingly small ways. That was a big form of self-care for Kelly when she felt powerless, she says. For her, it meant essentially project-managing her father’s illness: “Keeping up on appointments, finances, spreadsheets,” she says.
The need to put on a brave face
Applebaum sees a lot of caregivers trying to “protect” their loved one by avoiding hard conversations in favor of projecting optimism. But you both are probably experiencing similar worries. By choosing not to put them out in the open, you might be missing a big opportunity to bond. “What we find is while those conversations can be anxiety-provoking to start, they ultimately create increased connectedness, intimacy, and overall better wellbeing both for the patient and the caregiver,” says Applebaum.
If you do need to put on a brave face for the lung cancer patient in your life for whatever reason, just know that you don’t have to do that for everyone. Anika swore by the Ring Theory when she was her mom’s caretaker. The Ring Theory holds that if a crisis were a series of concentric circles with the trauma at the center, you should only vent to people in circles larger than yours because they’re further away from the trauma. When you are communicating with someone in a ring smaller than your own—someone closer to the center of the crisis or in the crisis themselves—the goal is to help. The motto, Anika explains, is “Comfort in, dump out.”
“So at the center of the circle, my mom could say whatever she wanted to whoever she wanted, and I could put on a brave face for her,” Anika says. “If I wanted to complain and cry and feel sorry for myself, I had to dump that to the more outer circles who were further from the crisis, like my friends or my therapist. That helped me feel okay about ditching my ‘I’m okay’ mask because there was a time and place for it.”
The desire for it to be over
“I wish someone told me that I wasn’t a bad person for wishing for the end,” Anika says. “Those last few weeks were excruciating because I just wanted [my mother’s] suffering to be over, and I was like, ‘Oh my god, am I wishing she would die?’”
Michelle had a similar experience. Two weeks before her mother passed away, Michelle and her dad put her mom in hospice care. At that point, she dealt with emotions that made her feel selfish. “Sometimes I found myself getting antsy and frustrated. I wanted to get on with my life. But then, the fact that you’re thinking that, oh my gosh, it makes you feel like a horrible human being.” She sums it up as wishing it would all be over, but also never wanting the end to come because you know you’re about to lose someone you love. It’s important to recognize that both can be true, says Applebaum.
The pressure to handle it alone
At her father’s request, Kelly handled all of his care solo—even to the point of not telling those close to them about his cancer because he wanted to keep it a secret. “I didn’t ask for help until I was so far gone,” she says. “I didn’t stand up to my dad and say, ‘I have to have other people helping me’ until it was almost too late, after I basically had my mental breakdown.” Kelly encourages any caregivers to build a support system from the beginning: “If there are people willing to help, you have to allow them to. You’re going to need it.”
It wasn’t until near the end that Michelle and her dad admitted that they couldn’t handle her mom’s care alone anymore. Though the decision to put Michelle’s mom in hospice came with guilt, she knows it was the best thing they could’ve done. “We just couldn’t take care of her [alone] anymore,” Michelle says.
It’s hard to make those decisions and ask for help, but Applebaum says it’s crucial. She calls to mind that airplane-safety mandate to always put on your own oxygen mask before helping anyone else. “In order to prepare oneself to do this work,” she says, “it’s critical that caregivers are taking care of themselves.”