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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 involved. 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 possible about the type of brain tumor being treated, as well as how it is being treated and what to expect after treatment. Ask the medical team about reliable online resources and community-based support services in your area.
Also, meet with the medical team. Talk with the team of healthcare 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 medicines
How to help manage 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 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
Even if you are not a primary caregiver, you can show your support in many ways. Your loved one will need assistance at some point, even if it is just with driving or preparing 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 medical 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, doctor 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.
Another important way to help is organizing medical records, such as surgery, chemotherapy, or radiation records. These records are very valuable, especially in cases of getting a second opinion.
If you have specialized skills, such as accounting, you can offer to help with more complex issues, such as medical bills and insurance paperwork.
One way to reach out is to give emotional support, or 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 diagnosis and treatment program. The National Brain Tumor Society (www.braintumor.org) is an excellent resource for both people with cancer and their families. It offers information on both virtual groups and in-person support.
An important role that caregivers can play is helping 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. Knowing that you will be a buffer to stressful interactions can be reassuring to your loved one.
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. Rehab is important for helping with these problems. Keep in touch with the rehab team, which 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 doctor 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 benefit from social support to help with your own grief. In addition to sadness 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 might be helpful to seek therapy to work through some of these emotions.
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