Caring for a loved one going through cancer is taxing. You’re used to seeing this person as strong, independent and capable. For perhaps the first time, they’re physically weak, emotionally shut down and have a hard time pulling themselves up. They’re cranky when they used to be the most patient person in the world. They’re tired, they sleep a lot, they’ve lost weight, gained weight, they don’t want to eat their favorite foods, they can’t do what they used to...
And, worst of all, you can’t make things much better for them.
You try to be there, to help out in whatever way you can, to remind them of how great they’re doing, how much you care… But none of these change the fact that they’re still suffering. You can’t take their exhaustion, their nausea, their discomfort away. You perk up when you catch glimpses of their old self before fatigue takes over and they have to climb back into bed. Seeing cancer suck the life out of them makes you angry and it breaks your heart.
Because the word cancer is often equated with death, aka the ultimate out-of-control experience, there is a tendency to want to take back control. For caregivers, this can come in the form of doing too much or sometimes not enough. As a Medical Family Therapist, I learned that there are two important elements to keep in mind as the caregiver of someone going through a medical crisis like cancer.
The first is agency, defined as the ability for the patient to make independent and empowering choices about their life. If you’re feeling out-of-control as the caregiver, just imagine how your loved one must be feeling in their body. The last thing you’d want is for them to feel even more powerless over their situation. Provided they’re of sound mind to do so, decisions should be made by them, with them and along side them, rather than for them.
Choose your battles. Both of you are already battling cancer and that’s tiring enough. If they have a preference that’s irritating but nothing more, let them have their way. If they have a strong opinion about how they receive care, express your concerns but respect their wishes. Their life is still theirs even though it’s hard to watch because you want something better for them. They have their reasons for certain choices, even though you might not understand or agree.
Aside from agency, a desire for communion, that is, a sense of belonging and being with their community, is also very important. Just because they disagree with you about what supplements to take does not mean you step away from their care all together. They might still need someone to fend for them at the next oncology visit, or you still make great company even though you’re doing nothing more than watching a show together.
Cancer patients often feel very alone, like they’re the only one going through cancer. While they may find that sense of camaraderie at support groups, you’re the one who has been there before cancer and now during cancer. You know they’re more than their cancer and you want to see them through. You’re the one who will love them through all of their changes and still find them beautiful.
Caring for a cancer patient can be very isolating. It is important for you to pay attention to what you might be needing to sustain care. If you’re a caregiver needing support for yourself, Cancer Lifeline and Cancer Pathways are two wonderful organizations in the Seattle area with support groups for caregivers. There you’ll likely find others who also share your exhaustion, frustration, sadness, pain and guilt around caregiving. There you might also discover your need for communion during this trying time.
Ada Pang is the proud owner of People Bloom Counseling, a Redmond psychotherapy practice in WA. She helps unhappy couples find safety and connection in their relationship. She also helps cancer thrivers and their caregivers integrate cancer into their life stories. You can find her at firstname.lastname@example.org.