How to Navigate Caregiving

When it comes to the standard advice for caregivers, much of it centers on platitudes, like “stay strong” and “be positive.” Though well-intentioned, it’s not always helpful. Caring for someone with cancer can be fulfilling, but it can also be really tough at times. Research shows caregivers often feel like they’re “flying blind” in this experience, yet they don’t want to admit when things get overwhelming—in comparison to the person with a cancer diagnosis, their own needs can feel insignificant. 

That couldn’t be further from the truth. Though your first instinct may be to put all of your own needs on hold, caring for yourself is one of the most important—and most forgotten—things you can do. It’s important for caregivers to check in with themselves at regular intervals to assess what they need, whether that’s a checklist to follow, information from medical professionals or social workers, support from friends and family, or even ten minutes of peace and quiet. Self-care isn’t just massages and naps—it’s also boundaries, knowledge, honesty, and support. When you get what you need, you’re better equipped to meet the needs of others.

In this guide for caregivers, we promise to skip the platitudes and give you straight talk on how to make things a bit easier as you navigate through this cancer treatment.

It’s okay to admit you don’t know what you’re doing.

If you’re not trained as a medical professional, it can be overwhelming to be suddenly thrust into a constant barrage of laboratory tests, surgical procedures, and infusions. Research shows one of the greatest sources of stress for caregivers is making sense of medical jargon and procedures. This is particularly true when caregivers are tasked with medical work like changing wound dressings, managing home infusions, or following complex regimens of oral medications. 

If you’re feeling overwhelmed with these tasks, you don’t have to go it alone. Whether you would like to run through the instructions one more time or delegate a task to a medical professional, your oncology nurse or social worker can help connect you with the resources you need to feel confident about the care you’re providing.

Checklists are your new best friend.

With all that’s going on during cancer treatment, it’s understandable to feel like you might be forgetting something. Use a dedicated notebook or app like ours to keep a record of important information like medical appointments, test results, medications and dosages, symptoms and side effects, questions, and names and numbers for resources. Having everything in one place will help you avoid second-guessing.

It’s never a bad time to ask questions.

Keep an ongoing list of questions that come up between appointments, and show it to your medical team at the start of each appointment. Having a list of questions up front lets you make the most of your time with your nurse or doctor. It also ensures you get the answers you need to feel more confident about the care you provide. 

Additionally, it’s important to ask questions of the person with cancer. Talking openly with each other about all aspects of your life together, whether it’s discussing treatment options or updating each other on work or family issues, can reaffirm your work as a team and maintain a sense of normalcy. It can also help you better understand the experience of the person with cancer. For example, someone who has just received chemotherapy may not be able to taste a meal you have prepared, or neuropathy might make it uncomfortable or unsafe to do activities you used to enjoy together. Discussing these developments can help you collaborate on adjustments that will satisfy the needs of all involved.

Some things are going to fall on the back burner. That’s fine.

Children, pets, yard work, laundry, grocery shopping—it’s a lot to handle, even without a full slate of doctor’s appointments and pharmacy runs. If you’re used to sharing these tasks with the person who has cancer, the sudden increase in physical and emotional labor can feel overwhelming. Make a list of all your tasks in a given day or week, ordering them by importance. Give yourself a break on the tasks lower on the list, whether that’s stocking your fridge with grab-and-go meals instead of preparing a home-cooked dinner every night or pausing your participation in the parent-teacher organization at your child’s school.

Caregiving can be a full-time job, which can affect your other full-time job.

Whether you’re missing work or distracted while at work, there’s no doubt caregiving can impact a person’s ability to do their job. It’s important to talk with your employer about the options available to you, whether that’s taking flex time, working from home, or taking intermittent or long-term time off under the Family and Medical Leave Act (FMLA). Having this conversation as soon as you can will allow you to plan accordingly for any changes that may occur, whether it’s delegating certain tasks to another employee or obtaining required equipment to work from home.

Be clear about what you can, can’t, and won’t do.

Setting limits for yourself can help you and the person you care for. This allows you to focus on the tasks you do best, while recruiting others with specific skills and strengths to fill in the rest. This also allows you to set clear boundaries for well-meaning friends and family by articulating the specific things you need from others, like mowing the lawn, driving to a chemotherapy appointment, or providing respite care for a few hours. (For particularly close friends and relatives, Jasper can help with this. Once you’ve identified where your priorities are, you can invite them into your account to collaborate and stay up-to-date on what’s needed.)

Pain is real – and rough.

One of the toughest things about cancer caregiving is seeing someone you love in pain. Caregivers often feel powerless in the face of their loved one’s pain, and studies show this can lead to physical and psychological distress. However, research also shows that the more a caregiver knows about pain, the less helpless they feel when they witness it. Taking the time to learn about pain—whether it’s from a member of your cancer care team or through books and videos—can reduce feelings of fear and helplessness.

You’re allowed to roll your eyes at self-care suggestions (but you should try them anyway).

Caregivers are constantly told to “do self-care” in the form of indulgences like spa days or dinner with friends, but many feel that’s easier said than done. Even if a caregiver has the time to do it, they often feel guilty for taking it. With a to-do list a mile long, the demand from others to “do self-care” can breed resentment, irritation, and anger in caregivers who don’t have a backup caregiver or money to hire someone to help.

Still, it’s important to recognize when you need a break. Don’t feel guilty about taking some time for yourself each day, whether that’s taking a walk, ordering takeout for dinner, or watching an episode of your favorite show. Anything that feels like an activity dedicated to making you feel good should be considered self-care. Also, don’t forget to do the basic things that maintain your overall health, so you can remain healthy enough to provide care: eat well, exercise, practice good sleep hygiene, and keep routine doctor and dental appointments.

It’s hard to be a caregiver.

During the course of a cancer treatment, you may feel stressed, anxious, sad, out-of-control, frustrated, uncertain, and disgusted. You may also feel comforted, rewarded, satisfied, strong, proud, supported, and loved. Sometimes, you might even feel all of these emotions at once. All of this is normal, but that doesn’t make it any less exhausting. If you can, seek out support in processing these emotions, whether through a caregiving support group, spiritual counselor, or regular visits with a therapist. This is especially true if you are feeling depressed or hopeless, depend on alcohol or drugs, or are fighting with your loved ones. You may be a caregiver, but you cannot put your own care aside.

You don’t have to go it alone.

Asking for help—and accepting help—can be hard, but studies show that caregivers who seek out support have less distress and feel less burdened. While family and friends are often just a phone call away, they may not understand the unique challenges of caregiving. That’s where local and national support groups and services can help out. Talk with your cancer care team, including your social worker, about information, resources, and support for caregivers. The Cancer Support Community and Caregiver Action Network’s 24-hour hotline are also great resources for caregivers to get advice and support from those who have walked in your shoes.

Caregiving isn’t easy, but there are many things you can do to make it less difficult. Being honest and proactive about your needs can help you navigate the challenges of caregiving. Remember: when you take care of yourself first, you’re better equipped to take care of others.

The content on this website is intended to provide the best possible information for you, but should not be considered—or used as a substitute for—medical advice. If you have questions about your diagnosis or treatment, please contact your health care provider(s). For questions or comments about this content, please email us at [email protected].