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When someone you care about has a brain tumor, it can be hard to know how to respond. Because brain tumors are not visible, news of the diagnosis might be a shock to everyone involved. At the same time, it could be a relief to finally know what is causing the person's changing personality, shifting moods, headaches, or difficulty thinking clearly — all possible symptoms of a brain tumor.
One way to reach out is to provide emotional support or help your loved one find an appropriate source of social support. Many people who have brain tumors find it helpful to talk to others who have been through a similar diagnosis and treatment program.
The National Brain Tumor Society is an excellent resource for both patients and their families. It offers information on both virtual groups and in-person support.
If you will be providing hands-on care during treatment and recovery, here are tips on how to be an effective caregiver.
Talk with the team of health care providers, which may include doctors, nurses, a social worker, dietitian, pharmacist, and psychologist, to find out:
How to keep your loved one comfortable
How to give or monitor medications
How to get the person up and walking or involved in any needed rehabilitation
How to respond to treatment side effects
What to do in case of a medical emergency
How to provide other forms of comfort that can help, such as gentle massage
What kind of diet is best
How to deal with depression and mood changes
How to manage cognitive changes
Learn as much as possible about the type of brain tumor being treated, as well as how it is being treated and what to expect after treatment. Ask your medical team about reliable online resources and community-based support services in your area.
People with brain tumors may have problems with speech and mobility before and after treatment. They may even have some personality changes. It might take some time for them to complete daily tasks or have a conversation. Keep in touch with the rehabilitation team, which may include physical and occupational therapists. Learn all you can about the rehabilitation plan so you can find ways to help your loved one achieve his or her goals and heal.
Even if you are not a primary caregiver, you can show your support in many ways. All cancer patients need assistance at some point, even if it is just with driving or preparing meals for their family. But many people with cancer (and other serious illnesses) feel awkward asking for help. Make sure your friend or loved one knows you are available.
You can make this process easier by offering concrete suggestions, instead of waiting to be asked. Volunteer to drive to and from medical appointments. Think about what essential tasks you can do when he or she is in treatment and recovery. For example, you might:
Carpool or tutor children
Cook dinner and eat it together for the social benefits
Make other meals that can be frozen and easily reheated
Mow or maintain the yard
Do everyday chores, such as the dishes, laundry, and vacuuming
It helps to devote a set day and time each week (or more often) to help with cooking or chores — that way your loved one has something to look forward to. And if he or she is well enough, going out for a drive, attending a religious service, or seeing a movie with you might be much appreciated. Sometimes, simply showing up and spending some quiet time together, relaxing, and giving other caregivers a break is the best kind of help you can give.
Another important way to help is organizing medical records, such as surgery, chemotherapy, or radiation records. These records are invaluable, especially in cases of getting a second opinion.
If you have specialized skills, such as accounting, you might consider offering to help with more complicated issues, such as organizing medical bills and insurance paperwork.
If you are a caregiver, you, too, might benefit from social support to acknowledge your own grief. In addition to an overwhelming sadness over your loved one's condition, you may be feeling anxiety, fear, frustration, or even rage at the constant stress of caregiving and the way your own life has changed. Try not to feel guilty or ashamed of these feelings. They are very normal. It might be helpful to seek therapy to work through some of these emotions.
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