For Caregivers

If you are married to, the parent of, or living with a brain tumor patient, then you are a caregiver. You may not even realize that you are a caregiver, because 100% of your focus is on your loved one, the brain tumor patient.

Caregiver and Support Links
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    Caregiving​

    Caregiving is extremely stressful. As the “healthy” person, you have many additional responsibilities depending on how sick your loved one is. Most likely, you are responsible for coordinating insurance claims, budgeting on one paycheck (or a reduced paycheck), scheduling and driving to MRI’s and follow-up doctor’s visits, doing all the cooking, grocery shopping, cleaning, bill paying, managing the medication schedule and making sure you have an ample supply of regular medication from the pharmacy, bathing or dressing your loved one, helping with exercise, making sure they are eating nutritionally, helping them with personal needs, changing bandages and dressings from surgery, taking care of your children, and holding down your full time job.
    Adding the role of “caregiver” to one’s regular daily activities is overwhelming, especially with the specific problems associated with brain tumors. In addition to the actual caregiving, there is the added stress of guilt. You may feel, “It should have been me” – especially if the brain tumor patient is your spouse or your child. You may feel that since you are the “healthy” person, you must do everything. Adding to this stress is the overriding feeling of worry. You might be thinking, “Will the tumor come back? Will the next MRI be clear? Will he or she have another seizure? Will the chemo work? Will the radiation work? Will we ever have a normal life again?”

    You may be on what we call “the brain tumor treadmill,” a cycle of repetitive stress, worry, work, cook, clean, grocery shop, worry, find the cure for brain tumors, worry, visit doctors, search for treatments, worry, feel guilty, worry. You might not have anyone to talk to about YOUR fears. You might not be sleeping well, which causes more mental and physical stress. Maybe you think it will upset your loved one to discuss your worries and your fears. You might have an unsympathetic boss or workplace, maybe your extended family or your spouse’s extended family just does not understand, or they are so worried and upset about their son or daughter that they can’t see that you need help too.

    As caregivers, it’s very hard to admit we need help. But, continuing on the “treadmill” can have devastating and life-long effects on your physical and emotional health. You alone as the caregiver cannot find the cure for cancer, and you cannot take care of everything and fix everything yourself. Unfortunately, most people will not realize that you need help. We caregivers are very good at playing super-mom, dad, wife, husband, partner, brother, sister. We think we can handle it all by ourselves, and don’t realize the damage we are actually causing to our own health. In order to be a better caregiver, we must also take care of ourselves. If you are a caregiver, YOU NEED TO ASK FOR HELP!!

    People who don’t realize how overwhelmingly stressful caregiving is might say, “If you need anything, call me.” They might not want to intrude on your privacy and only offer to help if you call them. They don’t realize that you are too stressed out and overwhelmed with worry to have the time to call.

    How to Help Caregivers checklist

    If someone asks what you need, or if you need anything, don’t be shy, hand them this list:

    Wonderful Ways to Help Caregivers and Brain Tumor Patients

    • Pick up milk, juice, chicken, etc. for us. Or call me from the grocery store and ask me for a short list of things we need.
    • Call me. I am so stressed and worried, I really need a friend (or mom, dad, sister, brother) to talk to.
    • Help me with the laundry. I have been so busy, the laundry is really piling up.
    • Come over and help me clean a little. Low blood counts from chemo mean we have to be extra careful about germs, so helping me keep the kitchen and bathrooms clean would really help.
    • Please offer to watch our kids when we have doctor’s appointments.
    • Have our kids over for dinner (or for a weekend or a movie) it would relieve a little stress for me and also give them a chance to have some fun.
    • Drop off pre-made meals occasionally that we can heat up, it would save a lot of time for us.
    • Offer to go out to lunch, dinner with me. I really need a break from all my stress and would love even just an hour of “normal” time.
    • Come visit “us” in the hospital. The hospital is so lonely and scary sometimes, it would really help all of us to have a friendly face around.
    • Take a walk, bike ride or go to an exercise class with me. I need to relieve my stress with exercise, but I am so stressed out and worried I could really use some encouragement.
    • Keep calling us, even if only to leave cheery messages on the machine. We have been so busy with the hospital and doctors that we haven’t had time to return your call . We need positive encouragement, and your messages are precious to us.
    • Pray with us and for us. Please set up a prayer chain or some sort of link with our church. We need lots of encouragement and support right now.
    • Be patient with me. I am a caregiver for a brain tumor patient and it is the scariest and most stressful thing I have ever done. I am so worried, and stressed out; I might be upset, frustrated and angry, which may come across as being snippy or argumentative. Please understand that I need your love and support, but I am having a hard time reaching out.