Tips for Extended Family and Friends of Brain Tumor Patients
As a friend or family member of someone with a brain tumor, there are many ways you can help. However, many people aren’t sure of the best way to approach the situation. Should you...
- Spend time with the patient?
- Help around the house?
- Stay away to give the patient and close family time and space?
- Wait for the caregiver to ask for help?
Sometimes, the answer can be a mixture of the above. All caregivers and patients are different, but there are many opportunities to be a solid source of emotional and practical support. Even the smallest task or short conversation can strengthen the caregiver, and, ultimately, improve the quality of life for the patient.
How to Coordinate Help
For the patient and caregiver, asking for help is often difficult. General offers of help (“What can I do?”) can be difficult to answer. One solution is for the caregiver to appoint a close friend or family member as “care coordinator.” This person can help the caregiver decide where help is needed most, and then help assign others to complete tasks (this list of caregiver tasks for friends and family can help). The care coordinator can also help communicate patient health updates, or assign someone else to do so.
If you are not the care coordinator, you are still much needed. The ABTA works with many caregivers of patients with brain tumors who have offered their suggestions about the best ways to help. Think about your own strengths, and how you and other members of the caregiver’s network can best contribute.
Social and Emotional Help
- Send positive messages. Caregivers spoke of friends and family doing prayer chains, sending simple “thinking of you” cards in the mail, or emailing personal notes with soft humor.
- Stay with the family during surgery or other major milestones so they feel supported.
- Spend time with the patient so the caregiver can have some time to him or herself. Sometimes caregivers may use this time to run errands or do paperwork, but they may also need rest and relaxation. Studies show that it is more difficult for caregivers to ask for a break than to ask for more “useful” help.i
My sister offered to stay with my husband while I got a massage. She insisted. It felt strange at first, but then I was really grateful.
- Offer money to help with everyday costs such as gas, meals, and medications. If you feel the caregiver won’t accept money directly, offer to go fill up the car and get it washed, or pick up a prescription and pay for it.
- Work with the caregiver to see what kind of household help is needed: grocery shopping, cooking, cleaning, laundry, small home repairs, walking the dog, taking out trash, mowing the lawn, pick up/drop off dry cleaning, pharmacy runs, or help with child care.
- Offers of transportation are often welcomed. This can include driving the caregiver and patient to appointments, picking up dry cleaning, or transporting children to and from activities.
- The caregiver may need help communicating to others about the patient’s status and help needed. You, or someone else, can be assigned the role of chief communicator.
- Helping to organize paperwork can greatly benefit the caregiver, whether it’s pulling together paperwork for the insurance company or getting everyday bills in order.
- Bring a fully-cooked dinner to the patient’s family. This can be done on your own, or organized on a schedule with others in the caregiver’s network.
What Not to Do
Along with all the ways the extended family and friends can help, caregivers also let the ABTA know what was not helpful. However, if you have done any of the below, please don’t be overly critical of yourself. Everyone who is helping in this situation is doing the best they can, and your work is truly making a difference.
- Don’t visit the patient for long periods of time, unless asked. Keep visits short. Most families are still trying to run on a regular routine.
- Don’t look for alternative treatments for the patient, unless asked. Trust the treatment decisions that the patient, family and medical team have made.
- If you are deeply emotionally impacted by the brain tumor diagnosis and treatment, don’t rely on the main caregiver for support. There are in-person and online support groups with many people who can listen.
iSherwood P, Given B, Dorrenbos A. Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. International Journal of Palliative Nursing. 2004;10:69.