Caring for a Person with a Brain Tumor or Metastatic Brain Cancer

Approved by the Lineagotica Editorial Board, 04/2018

Caring for a loved one who has a brain tumor or cancer that has spread to the brain from another part of the body can be a unique challenge. In addition to physical changes, people with a brain tumor or cancer that has spread to the brain can experience changes in their mood, personality, and thinking. As a result, caregivers often have a variety of responsibilities that can become overwhelming. Planning for this role will help you provide quality care while also taking care of your health and well-being.

Understanding the symptoms of a brain tumor or brain metastasis

A primary brain tumor is a tumor that starts in the brain. A secondary brain tumor is a cancerous tumor that starts in another part of the body and then spreads to the brain. The spread of cancer from the place where the cancer began to another part of the body is called metastasis, or metastases when there are multiple areas of spread. Brain metastases can develop from any type of cancer. The types of cancer most likely to spread to the brain are breast cancer, lung cancer, kidney cancer, and melanoma.

The symptoms of a brain tumor or brain metastases depend on where in the brain the tumor forms, the tumor’s size, and how fast the tumor spreads. Cancer treatment can also cause symptoms and side effects. Your loved one may have several symptoms or none at all.

Types of symptoms that may occur from cancer in the brain are:

  • Physical symptoms. These can include headaches, seizures, nausea, muscle weakness, vision problems, and bowel and bladder problems.

  • Cognitive symptoms. When the tumor affects how a person’s brain processes information, symptoms can include personality changes, confusion, impaired judgement, memory loss, and socially inappropriate behavior.

  • Emotional symptoms. Coping with a brain tumor or brain metastases can be very stressful, causing depressionanxietyanger, and other emotional changes.

It is important for you to monitor these and other symptoms. Relieving a person's symptoms and side effects is an important part of cancer care. This is called palliative care or supportive care. Palliative care can continue even when active treatment to cure or slow down the cancer stops. Be sure to talk with your loved one’s health care team about new symptoms or changes to existing symptoms.

Options to relieve symptoms may include:

  • Medications, such as corticosteroids that lower swelling in the brain, anti-seizure drugs, and pain medicine

  • Assistive devices, such as wheelchairs, canes, and walkers

  • Emotional support, such as counseling

  • Rehabilitation, such as problem-solving therapy, speech and language therapy, and physical therapy

  • Eating healthy

  • Complementary therapies, such as breathing exercises, massage, meditation, and acupuncture

Managing caregiving responsibilities

Learn as much as you can about your loved one’s diagnosis, treatment options, and chance of recovery. It is also important to ask about the medical, financial, and coping resources available to you and your loved one. As the disease and its treatment changes, so will your role. It is critical to:

  • Get to know your loved one's health care team. Request a meeting with the team to get clear, accurate information about your loved one’s illness and treatment. Also, learn what role each provider on the team plays.

  • Ask for help from family and friends. Identify tasks that need to be done. Then organize a network of people who can help you with the tasks. Some people create an email list or web page. You may also use one of many websites available to make this process easier. Learn more about sharing responsibilities.

  • Learn how to provide day-to-day and medical care. Ask your loved one’s health care team for information on the best ways to provide daily living care. This may include bathing, dressing, and giving meals. Also ask how to provide medical care, such as giving injections or wound care.

  • Consider professional caregivers. If possible, it may be helpful to hire medical professionals to handle medical responsibilities you are not comfortable doing. You can also hire non-medical home care aids to help with everyday caregiving tasks, such as grooming and cooking. Find out if your loved one’s health insurance pays for these services. Learn more about other caregiving options.

  • Explore community resources. Many communities have a wide range of resources for caregivers, including case management, legal aid, financial assistance, and counseling. Your loved one’s health care team can provide referrals.

  • Stay organized. Use resources to organize the person's medical informationtrack medical bills and health insurance claims, track treatments, manage medications, monitor side effects, and plan doctor’s appointments. The free Lineagotica mobile app can also help.

Learn more about how to manage common caregiving tasks and providing care at home.

Planning ahead

A brain tumor or brain metastases may affect a person’s ability to communicate or make decisions. Talk with your loved one now about his or her priorities for treatment. These could range from surviving as long as possible to maintaining a specific quality of life, even if that means stopping treatment. If this is difficult for your family to discuss, ask a member of his or her health care team, social worker, or counselor to help lead the conversation.

Topics to discuss include:

  • An advance directive. An advance directive is a legal document that states who a person wants to speak for them if they are too sick to make decisions. It also provides information about the types of care the patient does and does not want. Give a copy of the document to your loved one’s health care team and keep a copy at home.

  • Hospice care. People expected to live less than 6 months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. Your loved one should think ahead about where he or she would be most comfortable as the cancer progresses. This could be at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home an option for many families.

Caring for yourself

It can be hard to balance all of your caregiving responsibilities along with the responsibilities of your own life. Caregivers of people with a brain tumor or brain metastases are likely to be affected emotionally. For example, you may experience anxiety or depression. It is also likely for a caregiver to have physical symptoms such as feeling very tired. Events such as the disease worsening, an increase in symptoms, changes in treatment, or moving your loved one to hospice care can cause a lot of stress.

The personality changes common to brain tumors can also be very distressing. You may feel sad about watching the person you love act in a different way. You may also feel guilty about anger, frustration, or other emotions. It is important to remember that there is no right way to feel as a caregiver. And that it is okay to take care of yourself too. In fact, your mental and physical health is important to the well-being of your loved one.

Ask an oncology social worker or your loved one’s health care team about:

  • How to connect with other caregivers

  • Online or local support groups

  • Individual or family counseling from a professional mental health worker

  • Stress management techniques, such as meditation, deep breathing, and yoga

Learn more about how you can take care of yourself.

Caregiving during the final days

As a person nears the end of his or her life, it is difficult to know what to expect. Knowing how to provide care in the final days can help make the process more peaceful for your loved one and you. When you feel it is appropriate, talk with the person’s health care team about how to:

  • Recognize the signs of approaching death

  • Provide comfort

  • Ease pain your loved one feels

  • Get urgent help from medical staff, if you feel it is needed

  • Handle practical matters after death

Your loved one’s health care team can also provide information on coping with grief and loss. This can help you prepare for the loss of your loved one and the changes you may experience when your caregiving journey ends.

Related Resources

ASCO Answers Fact Sheet: When Cancer Spreads to the Brain (PDF)

Caregiving Basics

Long-Distance Caregiving

How I Went From Caregiver to Patient Advocate

More Information

American Brain Tumor Association

University of California, San Francisco: Orientation to Caregiving: A Handbook for Family Caregivers of Patients with Brain Tumors and Transitions in Care for Patients with Brain Tumors: Palliative and Hospice Care (PDFs)