Ivy Blog
Tips for Avoiding Caregiver Burnout
Caring for a loved one with brain cancer
“I’m dancing as fast as I can,” says Harriet Mccracken, meaning as a caregiver to her son managing a brain cancer diagnosis, she’s doing the best she can. “And that’s ok.”
Harriet’s son, Nick, was diagnosed with a Grade 3 meningioma at the age of 23. Although an adult, Nick needed care as he went through two surgeries, an Ivy Center Phase 0 clinical trial and treatment.
Nick’s diagnosis was life-changing, and not just for him, but for his family as well. Harriet and her husband, Ed, had just retired and had the time to devote to his care. Even with the extra time, being a caregiver comes with its own unique challenges.
Harriet says she could recognize when she was feeling exhausted and burned out. There were telltale signs. She’d start to lose concentration and be forgetful. The usual feelings of sadness and stress would become intense and overwhelming. Another unmistakable sign of burnout, she says, is fatigue.
To overcome burnout, Harriet recommends exercise and getting out in nature. She also attends caregiver support groups, talks with a therapist and has become friends with other parents caring for their children with brain cancer. It’s important to take care of the caregiver, she says.
“One lesson I learned is that you feel miserable worrying about losing this person, but don’t let the beast rob you of your joy and your hope for the future,” Harriet says.
Read more about Nick’s story here.
When is National Family Caregivers Month?
November is National Family Caregivers Month, a time to recognize the tremendous impact caregivers have on their families and to support them in their caregiving journey. In 1994, the Caregiver Action Network instituted this observance, with it reaching national acclaim in 1997 when President Bill Clinton signed the first Proclamation in appreciation of family caregivers.
Caregivers are an extension of their loved one’s “treatment team” and play a vital role in helping them navigate life with a brain tumor diagnosis. According to the International Brain Tumour Alliance, caregiver burden in brain cancer is among the highest of all cancers. The responsibility of this role may be overwhelming for some, and oftentimes, caregivers don’t have time to think about themselves or their own needs.
“The challenges faced by caregivers of brain tumor patients can vary depending on the location of the tumor. The patient can experience deficiencies such as personality changes, short-term memory loss, mobility issues and the inability to speak clearly,” says Dr. Sanai, director of the Ivy Brain Tumor Center and director of neurosurgical oncology at Barrow Neurological Institute. “It’s important to educate both the caregiver and patient on what to expect in order to navigate the new normal together.”
The importance of caregiver self-care
It’s not uncommon for caregivers to experience minor to severe health issues, such as depression, anxiety, stress or trouble sleeping. We all understand the importance of taking care of ourselves, so we are healthy enough to take care of others. But it’s easier said than done, especially as the demands and challenges of caregiving begin to increase.
“Don’t feel guilty about taking time for yourself — it’s just as important as taking care of your loved one, and it’s well-deserved,” says Jaclyn Garcia, RN, CNRN, nurse navigator at the Ivy Brain Tumor Center. “Find your happy place, wherever that may be, and go there to recharge so that you can be a better caregiver.”
Keep reading for practical tips and resources to help brain tumor caregivers thrive and avoid burnout during this challenging time.
How brain tumor caregivers can avoid burnout
Practice self-care in all aspects of your well-being, including physical, emotional and spiritual. It’s essential for caregivers to take a break but in order to do so, this may require finding a trusted family member or friend to watch your loved one. The American Brain Tumor Association suggests the following ways to care for yourself:
- Physical well-being: routine exercise, eating healthy and getting enough sleep
- Emotional well-being: talk to a therapist or other professional outside of your circle; keep a journal to help manage emotions; and, if possible, continue to do productive activities, such as working, to keep your mind occupied
- Spiritual well-being: practice mindfulness, meditation or yoga; some may also turn to their religion or faith-based community for support
Remember, you are not alone. Being a brain tumor caregiver can be extremely isolating. It can also be difficult for caregivers to think about the future given their current circumstances. Support groups provide a great outlet for caregivers to share stories and ask questions in a safe space among peers. “Engaging in open communication between caregivers and patients is so important to better understand each other’s needs and desires during the most challenging times of your lives,” says Lanette Veres, founder of The Gray Matters Foundation. When the COVID-19 pandemic forced many support groups to transition to a virtual platform, it made it easier for people to connect regardless of their location. You can learn more about the Ivy Brain Tumor Support Group here.
Divide caregiving responsibilities. If possible, it’s important for caregivers to make a plan and involve other family members so that they can delegate duties. According to Depend.com, sharing the load can be done by assembling a team, learning as much as possible about the family member’s medical condition or illness, defining everyone’s roles, and continuously working together. “Caregiving is not a one size fits all role, nor is it meant to be done solo. We are truly stronger together and it takes a village to move through a diagnosis like glioblastoma. Know when to lean on others for support,” says Colin Gerner, president and co-founder of StacheStrong.
Ask for help. Many caregivers feel guilty asking friends or family members for help—they may not want to burden anyone or think that they should be able to “do it all.” However, if you ask, you will find that most people are more than willing to help out. It may be a good idea to ask friends or neighbors to help with preparing meals, cleaning or running errands. To better organize help for someone in need, we suggest using an app or online tool such as Lotsa Helping Hands and CaringBridge.
Step out of your role as a caregiver and into the role of a loved one. As a caregiver, it’s easy to get caught up in the day-to-day activities, challenges and stresses of providing care. Make sure to set aside some time each day to put your caregiving duties aside and spend time just being with your loved one. You could make a simple meal together, watch a movie together, read together, look through old pictures or talk about something not related to the diagnosis. This will help honor and nourish the relationship.
Stay on top of finances and legal affairs. Make a plan with your loved one to help them with their finances so bills are paid on time and financial information is organized. It’s also important to discuss legal matters, such as an advanced directive or power of attorney. For more information, visit the National Caregivers Library.
Be prepared for your loved one’s doctor’s appointments by being ready to discuss any concerns, symptoms or changes with your doctor, as well as going over your questions. Make sure you have a clear understanding of the answers and don’t hesitate to ask the doctor for clarification. You may also want to utilize the whiteboard in the room to write down your questions or concerns so that when the hospital staff does their rounds, they may address them. The Gray Matters Foundation recommends keeping a binder or notebook on-hand to maintain a record of your loved one’s prognosis, storing materials you may have received, and writing down questions you might have. Another good resource is called Medical Memory, a platform to record patient/doctor interactions to watch later or share with others.
For even more great tips, check out Advice For Caregivers, By Caregivers, and the Caregiver Action Network’s 10 Tips for Family Caregivers.
In the words of the great Maya Angelou, “Try to be a rainbow in someone else’s cloud.” While everyone’s caregiver journey is different, the care and support devoted to your loved one are universal.