What to expect when caring for someone with cancer
People who care for someone with cancer are often called cancer caregivers. “Everybody who is supporting somebody through the cancer journey is a cancer caregiver,” says Joan Griffin, Ph.D., a health care delivery researcher at Mayo Clinic.
Cancer caregivers can be spouses, partners, family members, or friends. They take on tasks such as administering medications, managing symptoms, and communicating with the cancer care team, often becoming indispensable to the well-being of the person for whom they care.
Here's what you can expect when caring for someone with cancer:
The role will evolve
“I break cancer caregiving into stages, just like we do with cancer treatment,” says Dr. Griffin. “There is the early stage around diagnosis and treatment planning, there's the active treatment stage, and then there's survivorship. There are different roles for cancer caregivers along those stages.”
When cancer is diagnosed, a caregiver might provide emotional support. A caregiver might research treatments and providers who can offer second opinions. As cancer treatment starts, a caregiver might accompany their loved one to treatment appointments, help the person recover from surgery, and manage medications.
“When there’s a cancer diagnosis, it’s actually a diagnosis for the family because the cascading effects affect so many people,” says Dr. Griffin. For example, when a spouse or a parent receives a cancer diagnosis, the other members of the household must step into new roles while the person with cancer focuses on treatment and healing.
Practical needs and self-care come first
Providing care for someone with cancer is a long-term gig. To prepare, Dr. Griffin recommends reviewing health insurance policies to understand how your loved one’s care will be covered, talking to your employer about your situation, and preparing your colleagues for the necessity of time away from work.
Understanding how communication will occur between everyone providing care for your loved one is also key. “Talk to the primary care provider before treatment starts so you understand what the communication pattern is going to be between the oncology team and the primary care provider,” says Dr. Griffin.
Once these practical needs are addressed, establish a pattern of caring for yourself so you have the strength and endurance to care for your loved one with cancer. Make sure you have the emotional support you’ll need, such as a circle of friends or a support group you can touch base with when things are particularly challenging. Establish an exercise routine that helps relieve stress. And lean on friends, family or community resources to secure time for activities that bring joy.
“You need something that brings you solace,” says Dr. Griffin. “Some way to help you cope and manage all the stress that’s going to come with that role.”
Everyone will have big emotions
“Patients often have to manage and think about issues of grief, of grieving what their life was like, grieving what they have lost because of the diagnosis, and not really knowing what's going to happen next,” says Dr. Griffin.
Caregivers – especially if the person they’re caring for is a spouse or a partner – may also be feeling these things. The caregiver and the person with cancer are likely feeling fear as well – fear of death, fear of losing a loved one, fear of the financial challenges that come from losing income and paying medical bills.
“There are a lot of things that caregivers keep inside, even things they typically may have shared with the person with cancer,” says Dr. Griffin. “The caregiver is often not going to share those things, because it's just not considered to be what a good caregiver does.”
Dr. Griffin suggests focused writing exercises to help caregivers deal with emotions and stressors they aren’t comfortable sharing with a partner or a therapist. “It’s sitting down and writing 15 or 20 minutes a day,” says Dr. Griffin. “It's very focused writing about what you’re feeling and experiencing and the challenges you’re facing. It’s a way to express emotions and purge them.”
Some caregivers may find themselves caring for a family member with whom they have had a difficult relationship. Dr. Griffin encourages people to set boundaries. “Being a caregiver to somebody with whom you have a contentious relationship doesn't mean they can treat you poorly, or that you can treat them poorly,” she says.
Even in situations in which a caregiver has a good relationship with the person for whom they provide care, there’s still often some level of family strife. Dr. Griffin recommends telling the care team about these challenges, so they understand the situation and can be supportive.
When family conflict is an issue, counseling can also play a critical role. “Seeking out counseling is an important avenue for people who are really struggling with some of the communication issues that can happen during the cancer journey,” says Dr. Griffin.
You'll need to advocate for yourself, too
Don't forget to advocate for your needs as well as those of your loved one with cancer. Talk to the care team about your role as a caregiver, what you feel comfortable doing and what you need from them.
“Physicians are focused on the patient,” says Dr. Griffin. “Often, that means the caregivers are put to the side a little bit.”
If you’re not comfortable doing wound care or helping your loved one with bodily functions, let the care team know so they can find someone who can help with that. Make a list of questions to ask the care team when you go to appointments with your loved one, especially if you’re managing complex medications. “It’s critical to have those conversations early on,” says Dr. Griffin.
Many people who care for someone with cancer are also working full time. It can be challenging to do both. Find out if you have the right as a caregiver to take time off. Ask about a leave of absence. If you take a leave of absence, are you able to return to your job?
Having the option to work can also be good for caregivers, as it provides structure and focus. “Work sometimes can be a haven from the stress of caregiving,” says Dr. Griffin.
Despite the tremendous challenges of caring for someone with cancer, there are also rewards. Caregivers make a huge difference in the lives of people for whom they care. “It can be overwhelming, it can be stressful, it can be burdensome," says Dr. Griffin. "But people also find a lot of joy in it."
Watch Dr. Griffin discuss cancer caregiving on the Mayo Clinic Q&A Podcast:
Learn more about caregiving:
- Caregiver stress: Don't forget self-care
- Caregiving: Tips for long-distance caregivers
- Caregiver stress: Tips for taking care of yourself
- Information for caregivers from the American Cancer Society