Adult and Pediatric Caregivers
There is no denying the difficulty of watching a loved one go through the emotional and physical pain of being diagnosed with a brain or spine tumor. And the moment symptoms begin, your life as an ependymoma caregiver begins and brings its own emotional and physical battles, as well.
The most important thing you can do as a caregiver is provide support to the patient. This support can come in many forms: listening, organizing medical documents, doing research, contacting other family members and friends, assisting during doctor visits and hospital stays, assisting with daily household tasks during treatment and more.
Being a caregiver of an ependymoma patient is no easy task and you should seek a support system for yourself. Caregivers are often overwhelmed with the burdens of their role and are emotionally exhausted from the worry and fear of the diagnosis of their loved one. The feelings are completely normal and you should not feel guilty for experiencing them. A support system for yourself can be found through other ependymoma caregivers, other brain or spinal cord tumor caregivers, other cancer caregivers, family and friends, or anyone else you feel might be able to relate. As your role changes, as well as your relationship with your loved one, it might be beneficial to seek professional counseling.
There are also multiple organizations dedicated to the well-being of caretakers.
Visit these websites for more information about being a caregiver:
- American Cancer Society
- American Brain Tumor Association
- National Brain Tumor Society - Patients and Care Partners
Being a caregiver of a patient with a brain or spine tumor can be drastically different than other cancers. Ependymoma patients can have considerable changes in their emotional and physical states because of the location of the tumor and outcome of treatment. Read more about the effects of ependymoma treatment and symptoms of brain and spine cancer.
You should also discuss all your concerns with your loved one’s health care team because there may be steps they can take to minimize side effects that hinder everyday life. We understand the journey as caretaker is often a long road. Discuss your concerns, ask questions and connect with others who might be going through what you are. Find out how you can get involved and find support by hearing from others who have been diagnosed with an ependymoma.
Financial Support for Caregivers
In addition to the emotional challenges faced by parents and loved ones who are caring for a patient with a brain tumor, the financial difficulties of coping with this disease may seem overwhelming. Two leading brain tumor organizations, the American Brain Tumor Association (ABTA) and the National Brain Tumor Society (NBTS) have assembled a collection of helpful resources for those seeking financial support.
Being a Caregiver for Pediatric Patients
Being the caretaker of a child with an ependymoma or rare cancer poses additional challenges and fears. The child might be too young to fully comprehend what is happening. You can minimize fears by giving your child as much information as they need, but not more. Explaining situations such as treatment, travel, doctor visits and more might help make the experience less overwhelming. Children should be reassured that the brain or spine tumor is not the result of anything they did and it is alright to be angry or sad. It’s important to listen to your child’s fears, and professional counseling could be a good idea for you and your family after treatment is over.
It is common for siblings to feel neglected, jealous and angry when a brother or sister is seriously ill. Explain as much as they can understand, and request help from family members, teachers and friends to help keep some sense of normalcy for them.
As hard as it may be, try to take care of yourself. When you feel alone, you should seek support. Parents who get the support they need are better equipped to support their child. Your hospital’s social workers can put you in touch with other families of children with brain or spine tumors who may have insights to share. Remember, although there is tremendous heartache with any child illness, many families report being unified or growing in beautiful ways as a result of the experience.
What causes ependymoma?
The ependymoma outcomes and risk project intends to answer the one question that plagues most all patients: Why did this happen to me?