Who is a caregiver?
A caregiver is anybody who provides unpaid help, or arranges for help, to a relative or friend because they have an illness or disability. Help can be physical, emotional, spiritual, financial, or logistical.
Often just “being there” and quietly listening is all that’s needed.
Partner with the patient’s health care team
Having an honest relationship with your loved one’s medical team can help you feel a greater sense of trust and control. Consider encouraging the patient to seek a second or third opinion from experts, ideally at a brain tumor center. Carry a notebook with you to help your loved one to write down the things you’d both like to ask the doctor. Refer back to your notebook to help you remember what the doctor said.
Hope is a powerful concept and coping strategy that empowers both the caregiver and patient to look beyond the moment and into the future. Your sense of “hope” can change over time. It’s not about being positive all the time, but about trying to view things from a positive perspective as much as possible.
Signs & Symptoms
Sometimes a friend or family member is the first to notice the signs and symptoms of a brain tumor. These range from severe (such as seizures) to subtle (such as mood changes or fatigue). Because every brain tumor is different, every patient’s signs and symptoms will be different. If you are notice changes in your loved one’s health or behavior that are concerning to you, it is important to talk with them and to encourage them to seek medical advice and treatment.
• Persistent headaches
• Poor balance, reflexes, and/or coordination
• Issues with vision and hearing
• Nausea and vomiting
• Changes in personality
• Short term memory loss
• Difficulty speaking or comprehending
More information on signs & symptoms
It may be helpful to create a list of the symptoms you’ve noticed and try to trace when you first noticed the symptoms and any patterns you find. This can help the medical provider in identifying potential causes for these symptoms.
If the loved one you are caring for is a teen or adult, offer to go with them to their doctor’s appointment to provide support, take notes, and discuss outcomes with after.
Navigating the System
Depending on the type of insurance and circumstances which lead to suspicions of a brain tumor, it is likely your loved one may run into challenges navigating the system to get the care they need. We have heard from other patients and caregivers that it is important to be persistent if you feel that the medical providers you are talking with are overlooking your points of concern. Being seen at a brain tumor center may help ease the complications, as these providers are more accustomed to addressing needs specific to a brain tumor patient’s care.
Understanding the Diagnosis
Discuss the diagnosis so that everyone is comfortable with it. Learn about the brain tumor including its location, grade, treatment options, anticipated treatment side effects, and expectations for recovery.
When making treatment decisions and learning how to help manage your loved one’s diagnosis, consider their quality of life. They may need help determining what “quality” means to them and need your help to take reasonable steps to bring them closer to their quality of life goals.
It helps to recognize that you don’t have to sort everything out at once. It may take some time to deal with each issue that you face, so ask for help if you need it. It is likely that their doctor or nurse will know who you can contact for additional support.
Be an Advocate
If you feel there is something more going on, discuss it with your loved one’s provider.
Many people with a brain tumor diagnosis experience changes in their ability to think clearly and process information. This may be due to the tumor, treatment or simply feeling overwhelmed by the diagnosis. Whatever the cause, a loved one is often responsible for setting the course for a patient’s care as their advocate. If you must be the treatment decision-maker, know that you can take some time to ask questions and research options. Speak up.
It is also important to consider a second, or even third and fourth, opinion from experts, ideally at a brain tumor center. Encourage your loved one to seek a second opinion before committing to a treatment plan.