When someone you care about has a brain tumor, it can be hard to know how to respond. News of the diagnosis might be a shock to everyone. But there are many ways you can help.
If you will be a main caregiver for your family member or friend, make sure to get educated. Learn as much as you can about the type of brain tumor. Learn how it will be treated and what to expect after treatment. Ask the healthcare team for online resources and local support services.
Meet with the healthcare team. The team may include:
Talk with them to find out:
How to keep your loved one comfortable
How to give or monitor medicines
How to help manage side effects
What to do in case of an emergency
How to provide other forms of comfort that can help, such as gentle massage
What kind of food and drink are best
How to deal with depression and mood changes
How to manage changes in thinking
How to keep the person active
How to get him or her rehabilitation (rehab), if needed
If you are not a main caregiver, you can show your support in many ways. Your loved one will need help at some point. Help can include driving for errands. Or you can prepare meals for their family. But many people with cancer feel awkward asking for help. Make sure your friend or loved one knows you are available.
You can make this process easier by offering your help first, instead of waiting to be asked. Volunteer to drive to and from appointments. Think about what tasks you can do when he or she is in treatment and recovery. For example, you might:
Help your loved one remember appointments, healthcare provider visits, and other tasks.
Drive your loved one to appointments.
Carpool or tutor children.
Cook dinner and eat it together.
Make other meals that can be frozen and easily reheated.
Mow or maintain the yard.
Do everyday chores, such as dishes, laundry, and vacuuming.
Keep track of household safety. For example, make sure the oven and coffee pot are shut off after use.
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.
An important way to help is organizing medical records. This includes surgery, chemotherapy, or radiation records. These records are very vital, especially when a second opinion is needed. If you have special skills you can offer to help with more complex issues, For example, if you know accounting, you can help with medical bills and insurance paperwork.
One way to reach out is to give emotional support. Or you can help your loved one find a good source of support. Many people who have brain tumors find it helpful to talk to others who have been through a similar situation. The National Brain Tumor Society (www.braintumor.org) is a resource for both people with cancer and their families. It has information on both virtual groups and in-person support.
You can help other people understand your loved one's symptoms. Many times people with cancer look fine because some symptoms may be "invisible" until the person faces certain challenging situations. These might occur when the person tries to remember names, directions, or how to do a task. You can be a buffer to stressful interactions. This can be reassuring to your loved one.
People with brain tumors may have problems with speech and mobility. These problems can occur both before and after treatment. They may even have some personality changes. It might take some time for them to do daily tasks or have a conversation. Rehab is important for helping with these problems. Keep in touch with the rehab team. The team may include physical and occupational therapists. Learn all you can about the rehab plan so you can find ways to help your loved one achieve his or her goals and heal. Ask your loved one's healthcare provider what can be done to help improve cognitive health. Cognitive treatments may be especially important after cancer treatment ends.
If you are a caregiver, you may also need support to help with your own stress. In addition to grief over your loved one's condition, you may be feeling anxiety, fear, frustration, or anger at the 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 may help you to seek therapy to work through some of these emotions.