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A brain tumor is a life-changing diagnosis.
But not all brain tumors are the same. They are unique, as is their impact on a person’s body, emotions, and quality of life.
That is why we need care partners.
People navigating a brain tumor diagnosis often rely on a care partner or caregiver – a friend, familia member, or someone else helping with their everyday activities.
In fact, a quarter of Americans serve as caregivers to a beloved family member or friend.
Let’s dive into how a caregiver for someone with a brain tumor can balance care with their personal and professional obligations, and where to get support and resources.
Access this resource in Spanish!
1. Learn More about Brain Tumors
Like the patient, caregivers and care partners need to learn more about brain tumors and how it will affect the life of the person they’re caring for.
Find out more about brain tumors, low grade gliomas, and quality of life.
In addition, check out the Family Caregiver Alliance information and tips in English and Spanish that cover brain tumor facts, symptoms, treatment, and more.
“Brain tumors can indeed affect the mind, emotions, and/or personality,” according to the alliance. “Moods may change, as may the way a person acts. Your loved one may have difficulty doing more than one task at a time. Various treatments may slow the progression of these symptoms, so check with the doctor about what treatments may help.”
2. Explore the Roles of a Caregiver for a Person with a Brain Tumor
As a caregiver or care partner of someone with a brain tumor, there are many tasks and responsibilities involved, including:
- Organize and administer medications
- Communicate with physicians, nurses, and social workers
- Provide transportation
- Take care of home chores including cooking and cleaning
- Help with dressing changes
- Assist with physical therapy and occupational therapy exercises
- Research and negotiate medical insurance benefits and submit claims
- Attend to business, legal, and financial matters
- Monitor medication side effects
The UCSF Neuro-Oncology Gordon Murray Caregiver Program created the Orientation to Caregiving Handbook in English and Spanish to help caregivers who are helping loved ones specifically with brain tumors.
The handbook guides you on what to expect with caregiving, when to call the doctor, and what you can do at home to help.
“While no amount of information can eliminate the physical work and emotional challenges of caring for a loved one who is ill, the helpful hints presented in this handbook are designed to ease the frustration and sense of isolation you may feel while doing what can sometimes seem like an impossible job,” according to the handbook writers.
3. Find Bilingual Resources that Support Caregivers
Many resources exist to help caregivers.
The National Cancer Institute has several publications to support caregivers, including ways to ask for help and other important topics in English and Spanish.
AARP provides resources for caregivers and care partners on caregiving basics, financial and legal resources, and life balance in English and Spanish.
The American Cancer society also provides information for caregivers in English and Spanish.
There are also resources for veterans and caregivers through the VA Caregiver Support Program, which is also available in Spanish.
One specific resource can help with palliative care – specialized medical care for people with serious and/or life-threatening illnesses.
An English and Spanish handbook, Transitions in Care for Patients with Brain Tumors: Palliative and Hospice Care, is available from the UCSF Neuro-Oncology Gordon Murray Caregiver Program on providing patients with relief from the symptoms, pain, and stress.
“The goal of palliative care is to improve quality of life for both the patient and their family,” according to the UCSF Brain Tumor Center.
4. Create a Plan as a Caregiver
A brain tumor diagnosis can be shocking for both the patient and their loved ones.
As a caregiver or care partner, having a plan and staying in communication with both the patient and their care team (doctor, nurse, social worker, etc.) is important.
Asking questions and being an active participant in care planning.
Fortunately, through The Conversation Project, caregivers and care partners can download a free guide for talking with a health care team in English and Spanish.
Additionally, the National Brain Tumor Society provides lists of questions to ask a patient’s health care team about diagnosis, treatment, survivorship, and more.
“Assertive is not the same as aggressive. And just as being aggressive isn’t the answer, neither is coming across as passive,” according to the Family Caregiver Alliance. “Assertive communication is your best tool in conveying what’s necessary and getting what you need.”
For planning, a caregiver or care partner could write down some insights that are important to the patient and family members and share this with the care team, including fears they may have, how best to communicate with them, and social and emotional concerns.
The Conversation Project also created a conversation-starter guide in English and Spanish to assist with talking about a person with a brain tumor’s wishes and sparking conversations so they can have a say in their health care.
“Talking with the important people in our life can bring us closer together. It also helps us create the foundation of a care plan that’s right for us — a plan that will be available when the need arises,” according to The Conversation Project.
The Conversation Project’s “What Matters to Me” workbook is available in English and Spanish as a tool for a caregiver to help who they’re caring for get ready to talk to their health care team about what is most important to them.
PREPARE also has English and Spanish tools to help caregivers and care partners assist with medical planning.
5. Handle Paperwork and More
Medical care, treatment, and other factors that a person with a brain tumor experience also comes with a lot of paperwork.
With this in mind, caregivers should be organized and maintain important paperwork, especially if extended family is involved in the care of the patient.
Creating a weekly or monthly check-in with the patient to talk about needs, wants, and goals can also be an effective way to relay communication and ensure that as a patient’s requests are being met as caregiver or care partner.
The National Institute on Aging also provides caregiver worksheets to assist caregivers and with coordinating care and tracking your caregiving responsibilities and needs.
For some, it may not be easy to determine who will take care of them or serve as a caregiver.
Because of this, the Conversation Project created an English and Spanish guide to choosing a health care proxy (also known as a health care agent, power of attorney for health care, or surrogate decision-maker), a person who speaks on a patient’s behalf if they can’t on their own.
“It’s really important to plan now, since we can’t predict the future,” according to The Conversation Project.
6. Build a Community
Caregivers and care partner have many responsibilities, which can be daunting.
But a caregiver doesn’t have to do it all by themselves.
A person caring for a person with a brain tumor can also turn to the person’s medical care team. Getting to know the care team and who to go for specific questions can set up the person and their caregiver for success.
For example, social workers help identify a patient’s psychosocial, mental, and emotional needs, along with providing, developing, and/or aiding in the access of services to meet those needs, according to the Agency of Healthcare Research and Quality.
Also, nurse practitioners can answer questions and help make treatment decisions.
Additional external resources are available through organizations like the Brain Tumor Network, which helps patients and loved ones manage a primary brain tumor diagnosis, overcome treatment obstacles, and facilitate access to quality healthcare.
Similarly, the National Brain Tumor Society has a personalized support and navigation team that responds to outreach from patients with a brain tumor and care partners with quality, unbiased information, resources, support programs, and services.
The American Cancer Society has a cancer helpline for cancer-related information, referrals to patient-related programs or resources, donations, and volunteer opportunities.
CancerCare provides a free telephone resource navigation to both people living with cancer and caregivers, including:
- Provide cancer-focused guidance
- Help improve communication with one’s medical team and loved ones
- Provide practical information about treatment
- Provide resources in the community
To access these resources, 800-813-HOPE (4673) or email info@cancercare.org.
While caregivers and care partners will communicate regularly with who they care for, it’s important to also loop in family and other loved ones.
This can include creating a text group, care page, blog, Facebook group.
This can help reduce stress on everyone to hear what is happening, know who is taking care of what, and easily communicate what may be needed for someone with a brain tumor.
Making a list of needed things, such as meals, transportation, childcare, cleaning, prayers, and gift cards.
For the Latino community, familia and pride are big parts of the culture.
In some cases, Latinos might prefer to have family members participate in all aspects of care. It’s important to note that every individual is different and how they feel about their care and care partner may change over time, so communication is key.
In other cases, people could be hesitant to ask family and loved ones for help or support.
“Little things on a regular basis can mean a lot. Maybe someone would bring an occasional meal or dessert. Having someone help with household chores can be an opportunity to socialize as well as get things done,” according to the Family Caregiver Alliance.
7. Advocate for Your Loved One
Someone who is living with a brain tumor may want to be in control of care.
Others do not have the capacity.
Advocating for a family member with an illness like a brain tumor can bring about concerns about respecting the authority of medical providers versus raising questions.
Seeking out treatment at other hospitals or getting a second opinion is something to consider when supporting a family member.
“Rest assured that getting second opinions is a simple, routine part of medicine. In fact, your physician may also be seeking one or more additional opinions,” according to AARP.
Language barriers can also be a concern, especially for Spanish-speaking caregivers or English-speaking caregivers for Spanish-speaking patients.
So, it’s important to request and speak with clinic or hospital staff to request an interpreter and connect with social workers to access resources and materials in your language.
Federal law requires that health care providers offer interpreters to individuals who do not speak English well.
“It’s important to have many conversations with your clinicians over time. The conversation can continue and change as your health changes. To get the best care possible, keep your clinicians updated so they understand,” according to The Conversation Project.
8. Advocate for the Community of People with Brain Tumors
Many individuals find it helpful to get involved in brain tumor community events to connect with others dealing with the same issues.
There are many opportunities to advocate in the brain tumor community:
- Walks, runs, and rides through organizations like the ABTA and NBTS.
- Becoming an advocate
- Head to Hill Scholarship
- Joining committees or patient and family advisory councils
For example, ABTA’s Breakthrough for Brain Tumors 5k Run & Walk has raised over $18 million for brain tumor research!
9. Consider the Social Needs of Caregivers and People with Brain Tumors
It’s important for caregivers and care partners to consider social care, too.
The social determinants of health (SDoH) are the non-medical conditions in which we are born, live, work, and age.
These factors, such as employment opportunities and access to healthy food, can impact health, especially among Latinos and other communities of color, according to a 2024 publication.
“Health inequalities arising from these communities’ unmet needs can also apply to caregiving, as family caregivers often face similar challenges due to their societal position … further contributing to poorer health and higher rates of caregiver burden,” according to MeetCaregivers.
Treatment, medications, and other factors can take a financial toll on patients and their families.
Organizations like the Patient Advocate Foundation has the Co-Pay Relief (CPR) Program that provides direct financial assistance to eligible patients with copays, coinsurance, and deductible amounts required by the patient’s insurance company for any prescription drugs.
Similarly, CancerCare created a list of financial assistance sources, including government assistance, cancer organizations, and more.
Immigration status is a big concern, especially for Latinos.
Triage Cancer provides a Quick Guide to Health Care Rights of Immigrants in English and Spanish that assists care partners and patients learn about terms related to immigration status and health care resources available to immigrants.
“Ultimately, connecting family caregivers to the help they need leads to better care at lower costs,” according to MeetCaregivers. “In a growing volume of research about this subject, experts suggest similar solutions for stakeholders with the power to influence and implement policies that better support informal caregivers and lower caregiver burden.”
10. Take Care of Yourself, Too
As someone who is stepping in as a caregiver or care partner, you can feel a sense of pride and satisfaction that a loved one with a brain tumor is being cared for.
However, a caregiver can also experience stress or anxiety, and feel overwhelmed.
“It is normal to feel both positive and negative emotions when providing care for a loved one who is ill,” according to UCSF Brain Tumor Center.
For a caregiver and care partner, self-care is crucial.
“Taking time for yourself can help you be a better caregiver. Caring for your own needs and desires is important to give you strength to carry on. This is even more true if you have health problems,” according to the National Cancer Institute’s Caring for the Caregiver publication.
In an emergency situation on a plane, we’re instructed to put the oxygen mask on ourselves before helping someone else.
The same goes for a caregiver and their patient.
“Only when we help ourselves for the first time will we be able to help others effectively. Taking care of yourself is one of the most important, and one of the most forgotten, things you can do as a family caregiver,” according to the Family Caregiver Alliance.
The Family Caregiver Alliance provides resources in Spanish and English that can help caregivers take care of themselves and their well-being.
Caregivers and care partners can also seek other ways to take care of themselves, including:
- Reducing stress through techniques like prayer or meditation
- Good habits like practicing good hygiene, exercise, and getting enough sleep
- Reaching out family or community organizations for help
- Prioritizing health and visiting the doctor regularly
- Staying organized with notes and tools like Google Calendar
Additional tools that provide help for caregivers and their patients include:
To lessen the burden of symptom management, Mahendar Ramidi helped develop the My STORITM mobile app. This app helps people with a brain or spine tumor and their loved ones track, organize, and manage symptoms and self-care activities.
“We wanted to make sure that caregivers can also use the app and help their loved ones track their symptoms and manage their health condition,” Ramidi said.
11. Consider Participating in a Cancer Registry
Participating in a cancer registry can help your familia and your community.
The International Low Grade Glioma Registry, for example, is a partnership between researchers, clinicians, patients, and care partners working together to focus on helping people initially diagnosed with low grade glioma brain tumors.
“Through the Low Grade Glioma Registry, we hope to learn more about the effects treatments have on the daily life of patients and care partners,” the Registry states.
Over 700 people have enrolled in the Registry, creating a community of individuals interested in low grade glioma research and facilitating exploration of research questions that are important to people facing these tumors.
You can join the registry if you:
- Have ever been diagnosed with a grade 2 or 3 glioma
- Are currently between ages 21-79, regardless of the age that you were diagnosed with a low grade glioma (grade 2 or 3)
- If you have had two or more surgeries for your glioma, you are also eligible to enroll in an additional study within the registry called OPTIMUM
- Enrollment is available in English and Spanish, for people in any country
Tony Rentas is a participant in the Registry.
Rentas, a native of Puerto Rico and U.S. military veteran, was diagnosed with a low grade glioma, a rare type of brain tumor.
He often shares his story.
And he jumped at the chance to join the International Low Grade Glioma Registry.
“One of the biggest things that I wanted to do is help people as much as I can,” Rentas said. “They’re taking this amazing, amazing initiative, where they’re trying to learn as much as they can about low grade glioma.”
Editor’s Note: This article is part of a partnership between Salud America! at UT Health San Antonio and the International Low Grade Glioma Registry to raise awareness of brain tumors, real people with brain tumors, quality of life, and caregiving as part of Brain Tumor Awareness Month in May. This work is supported by a grant to Yale University by the National Cancer Institute (1 U2C CA252979-01A1). Its contents are the authors’ sole responsibility and do not necessarily represent official NIH views.
By The Numbers
142
Percent
Expected rise in Latino cancer cases in coming years
