In the United States, an estimated 6 million people are taking care of someone with cancer. These cancer caregivers are essential to the well-being of the person with the diagnosis, helping with medical care, personal needs, finances, household chores and more.
Kate Lally is a palliative care physician and associate chair for Adult Clinical Services in Supportive Oncology at Dana-Farber Cancer Institute in Boston, where she helps people with cancer manage side effects from treatment, make decisions about their care and cope with their diagnosis. Lally said that at almost all of her visits, the person with cancer tells her something about their caregiver along the lines of, “I don’t know what I would do without them.”
Even though the value of caregiving is high, it often comes with costs: It can feel almost impossible to take care of yourself when you’re caring for someone else. Caregiving makes it difficult to find time to exercise, prepare nutritious meals, get proper sleep or even make it to doctor’s appointments of your own.
And there are very real consequences of neglecting your own health. Half of cancer caregivers report high emotional stress related to taking care of their loved one. A quarter report high financial strain. Caregivers are also at higher risk than non-caregivers for heart disease, depression and lower quality of life.
For example, just days before Dolly Parton died, People magazine published an interview in which she said she hadn’t taken care of her own physical health while she cared for her husband before he died. This is a tangible example of what can happen when caregivers don’t look after their own physical health, said Stephanie Lieber, executive director of Imerman Angels, a Chicago-based cancer support organization that matches people with cancer, cancer survivors and cancer caregivers for one-on-one support. The organization recently published a free guidebook for caregivers, “The Cancer Caregiver Companion: How to Take Care of Yourself When Taking Care of Others.”
It’s common, however, to prioritize a loved one’s critical health issues over your own long-term health care needs. “Invariably, what the caregiver says is, ‘I’m not going through anything. You’re the one going through everything,’” Lally said. Caregivers perceive their stress as much less taxing than a cancer diagnosis and treatment. But if you don’t look out for yourself, you won’t be able to provide quality care, she noted.
While there are a lot of resources for caregivers on how to fulfill those duties, most “are not focused on how to support yourself when you’re taking care of someone else,” Lieber said.
So how do you actually take the steps to protect your physical and emotional well-being in the midst of taking care of a loved one? Here are some strategies to try.
Find a community who understands your experience
There is often comfort in knowing you’re not alone. “What we have learned over the years is that there is so much growth and hope, and anxiety is diminished, when you talk to someone who has been through it,” Lieber said.
You can also join a support group for cancer caregivers. The hospital where your loved one is receiving treatment might have some, Lally said, and many people also find virtual groups or Facebook forums where they can “post and feel connected,” she said. “No one understands it as well as somebody going through the exact same thing,” she said.
Search online for groups near you or explore the directories of groups from organizations such as the American Cancer Society or Cancer Care.
Prioritize one enjoyable thing for yourself daily
Lots of people already feel like there aren’t enough hours in the day to get the recommended amounts of healthy habits such as sleep and exercise, and caregiving only cuts further into the time you have to focus on your own needs.
Lieber recommended prioritizing at least one meaningful activity or habit for yourself each day: “Choose one thing that you did pre-caregiving that gave you joy, that made you feel good, that provided a sense of calm, that you are going to commit to,” Lieber said. It can be anything: a daily walk, a phone call to a relative, coffee with a friend, as long as it’s all for you and not about taking care of anyone else, she said.
If your loved one with cancer can’t be alone for too long, find a family member or neighbor who can come over to give you the time you need for yourself, Lally said.
Make a short list of your personal care must-dos
Along those lines, making sure to attend to your most basic needs can go a long way. Ask yourself, “What steps do I need to take to make sure I can [provide care] and not crash and burn?” Lally said.
List out these non-negotiables, such as brushing your teeth, bathing yourself and eating proper meals (even if your loved one isn’t eating much).
Remind yourself that sticking to these daily practicalities is a way to focus on how important you are in the life of your loved one and help you keep showing up, she said.
You can try to do some of these daily habits when your loved one is asleep or when someone else comes to help. If you’re unable to find any time for yourself, consider looking into caregiver resources near you. Search the Family Caregiver Alliance’s database of public, nonprofit and private programs and services that might be able to help.
Reframe the way you think about asking for help
Asking people in your network for help can feel hard — especially when you’re used to being the helper — but doing so can help lighten the load. And it isn’t selfish or frivolous. “I’ll often frame it as ‘You will be better able to care for them’ because I think that’s often what caregivers need to hear,” Lally said.
If you’re not sure how to ask, start by thinking about all the mundane tasks that have to get done, such as grocery shopping or walking the dog, Lieber said. Then, consider which friends, family members or neighbors are already doing these tasks and could pitch in. If a neighbor already walks their dog twice a day, could they take yours with them once a day, for example?
You can — and should — ask for help so that you can care for yourself, too. For example, lean on other caregivers who can come over if you need a nap or have any of your own medical appointments to attend.
There will also be people who offer specific forms of help, such as: “I’m going to the coffee shop. What’s your drink order?” Lieber said. “Don’t shy away from that. Lean into that.” If that makes you uneasy, think about the comfort it may bring them to be able to help you during a difficult time. “It can be a real boon to someone’s self-confidence to be able to give you something that you need in this moment,” Lieber said.
Get professional support if you need it
Some people experience compassion fatigue, a combination of burnout and stress caused by the trauma of a loved one’s diagnosis and treatment; or caregiver burden, feeling like caregiving has had negative effects on their emotional, physical, social, financial and/or spiritual lives, Lieber said. In either case, these are “beyond just exhaustion or just anxiety,” she said.
Red flags that your caregiving stress is getting too high include fighting more with your loved ones or having outsize emotional reactions to things you usually handle with more grace, Lally said.
Evidence is limited but suggests that cognitive behavioral therapy and other forms of counseling can help. Start by asking your loved one’s care team whether they have any recommendations for providers with experience working with cancer caregivers. You can also search an online database from your insurance provider or from a platform such as Psychology Today or ask other caregivers for recommendations.
Ultimately, all of these steps will help you see how important you are to this process. “We want caregivers to understand that they matter, that their needs, their feelings and their well-being deserve attention, too,” Lieber said. “They’re more than just the person they are taking care of.”
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