Tips for Caregiver Burnout

Stephanie Diana started caring for her husband Joe after he was diagnosed with lung cancer. Joe’s treatment began with surgery to remove the cancer. “After surgery was the most challenging because he was in the hospital for 6 days straight, and I stayed with him,” said Stephanie. “He needed a lot of care then, and he couldn’t really move for a variety of reasons.”

Then, Joe started chemotherapy (chemo). During that time, Stephanie’s caregiving responsibilities started to change. Joe was so sick from the side effects of treatment that he didn’t want to do anything, including eat. “That was the hardest part during chemo, was I felt so helpless,” said Stephanie. “So, the most I could do was get a bucket or help him into the bathroom.”

Being a caregiver can be hard. Good, reliable caregiver support is very important to the physical and emotional well-being of people with cancer. But the physical and mental demands of caregiving can be all-consuming. Between taking loved ones to appointments and managing their daily care at home, it’s common for caregivers to let their own needs go. But not prioritizing your own well-being can eventually lead to what’s called “caregiver burnout.”

“Caregiver burnout refers to the physical, emotional, and/or mental exhaustion that can occur due to the burden and distress of caring for a friend or family member with cancer or another serious illness,” said Kathryn J. Ruddy, MD, MPH, FASCO, an American Society of Clinical Oncology (ASCO) expert and medical oncologist at Mayo Clinic Comprehensive Cancer Center.

If caregiver burnout is not identified and managed, it can lead to feeling physical symptoms of stress and mental health problems like anxiety and depression. It can also negatively impact the person you’re caring for. That’s why it’s so critical for caregivers to recognize the signs and symptoms of burnout and get the help they need.

Signs and symptoms of caregiver burnout

People can experience caregiver burnout in different ways. They might feel:

• Fatigue
• Stress
• Withdrawn
• Distracted
• Alone
• Frustrated or angry
• Helpless

Caregiver burnout can happen at any time while caring for someone. For many caregivers, it happens while actively managing the daily needs and care of their loved one. But for other caregivers, it might not occur until their caregiving responsibilities have started to ease.

For example, Stephanie didn’t notice the severity of her burnout until Joe’s treatment was complete. “I think I was on autopilot during his treatment,” said Stephanie. “So, I never really thought about how wrapped up I was in the anxiety and trauma. Now, when I look back, I can see how tightly wound I was.”

While the physical burnout had an impact, Stephanie said it was the emotional and mental effects that were most difficult to navigate. “The emotional and mental burnout and fatigue can have a really lasting impact,” she said. “It wasn’t until Joe was better that I realized I was still holding on to so much of that fatigue and anguish that I processed it later on.”

Tips for caregiver burnout

If you are experiencing caregiver burnout, remember that you are not alone. It’s quite normal to feel overwhelmed or burdened while caregiving. The first steps to relieving burnout are recognizing it and asking for help. “Burnout is very common and can impair your ability to care for your loved ones,” said Dr. Ruddy. “You may be able to reduce your distress and exhaustion by asking for help from friends and family.”

Asking for help from friends and family was especially beneficial for Stephanie and Joe. “People want to help,” said Joe. “To not allow them to help robs them of the opportunity to do something in place of just watching you suffer. It makes them feel better. It makes you feel better. It helps everyone.”

For caregivers, it’s also important to accept help when it’s offered. “I think initially, you want to be brave, and you don’t want to impose on anyone,” said Stephanie. “I think it’s part of human nature to say, ‘No, thank you.’ But learning to say ‘yes’ is not only very gracious to yourself, but it’s also gracious to others. It gives them a little bit of meaning.”

If you are uncomfortable asking for or accepting help from friends and family, remember that your loved one’s cancer care team is always there to help. They can point you to caregiver resources that may be available to you. They can also refer you to a mental health professional or provide respite care options to help support you if needed.

As a caregiver, you have an important and unique role in helping your loved one through their cancer experience. While being a caregiver can be quite stressful, many describe it as enriching, meaningful, or rewarding. Here are other strategies that might be helpful for managing caregiver burnout, too.

• Connect with other caregivers. The caregiving role can open up doors to new friends and relationships. Being able to talk with other people going through similar experiences can help you feel less alone. “Sometimes it’s easier to talk to strangers, because you don’t want to upset other people that are kind of going through it with you,” said Stephanie. Caregiver support groups, either in person or online, can also be great places for caregivers to ask questions.
• Find a healthy outlet. There are many ways to relieve caregiver stress and fatigue. It can be tough to do some things you enjoy, but it’s important to make time for them. For example, you might find time to attend a faith-based event or meet a friend for lunch. You might find relief in getting regular exercise. Or, you might prefer to join an art class or a book club. For Stephanie and Joe, biking and running together helped them both cope and find healing after Joe’s treatment.
• Practice mindfulness and meditation.Mindfulness involves different ways to relax the body and mind and help reduce stress. Meditation is one practice that can help calm your body and mind. People practice meditation in different ways. Some focus on quieting their minds and focusing on their breath. Others focus on repeating a phrase. “Even if it’s a minute, taking a deep breath and pausing your thoughts can be incredibly helpful,” said Stephanie.

Dr. Ruddy is a member of ASCO’s Patient Information Editorial Board.