A brain tumor diagnosis is a life-changing event, not only for the person with the tumor but also for family members and other loved ones. Although every caregiving experience is unique, many find it helpful to talk to others going through similar experiences. The ABTA offers resources that can help you feel connected and can help you cope.
Role of a Caregiver
The role of a caregiver is difficult to summarize, because it is different for each person and often evolves over time. The good news is, you’re not alone. Your caregiver role may include:
Your changing role
Your role as a caregiver will probably change throughout the course of the patient’s illness. For example, after diagnosis, you may be focused on education yourself about brain tumors and types of brain tumor treatments. At another point along the journey, you may help the patient manage side effects from treatment or coordinate follow-up appointments. This may seem overwhelming at first. But after making the initial big decisions of choosing a medical facility and treatment plan, caregivers often feel they are in a place to be proactive, whether that involves researching complementary therapies, finding a support group, or looking into home care options.
Caring for the Caregiver
It can be difficult to put yourself first, especially when thinking about everything that’s going on with the patient. But taking care of yourself will help you be a better caregiver.
There are many emotions that may arise as you care for a loved one with a brain tumor. Here are some examples of feelings many caregivers experience. All are normal.
Anger and guilt
You may feel angry at the patient for getting ill and resent the way it has turned your life upside down. You may also feel guilty for feeling angry. Friends or family may also direct anger and resentment at the caregiver, making anger and guilt more intense.
Grief and loss
You may grieve the loss of the life you once had with the patient, the roles you identified with (spouse, parent, co-worker), and the loss of income (either from your own inability to work because of caregiving duties, or because of the patient’s loss of work).
- Behavioral and cognitive changes are also a cause of grief. To many, it can seem like they are losing someone they love before they are actually gone.
- In addition to mourning your current situation, you may experience grief about the future, feeling like the life you once looked forward to is gone.
You might feel a mix of emotions, sometimes all at once:
- Denial and anger
- Joy and sadness
- Confidence and anxiety
Being a brain tumor patient’s primary caregiver is associated with high levels of stress that can be caused by:
- Physical and emotional changes
- Financial burdens
- Career sacrifices
- Workplace discrimination
- Difficulty coping with the patient’s physical and cognitive changes
In order to care for your loved one effectively, you have to take care of yourself too. Your role is demanding, and self-care is important.
Physical self-care practices
Get a checkup and talk with your doctor about your caregiving role.
- Eat healthy, nutritious foods.
- Exercise every day for health and stress management – even a daily walk can make a difference.
- Get enough sleep.
Mental and emotional self-care practices
- Keep a journal where you can log what challenges you’re facing as well as what you’re grateful for.
- Keep a written list of things you need to do.
- Reevaluate your priorities and drop things that don’t matter as much.
- While it can be difficult to balance caregiving with work outside the home, many caregivers appreciate work as an opportunity to shift gears and experience feelings of competency and accomplishment.
Spiritual self-care practices
- Mindfulness, visualization, meditation, yoga, or leisure activities such as reading a book, watching a movie, or pursuing a hobby can be helpful.
- For some, practicing religion and being part of a faith-based community provides a sense of inner peace and contentment. Some houses of worship have outreach programs and can assist families who need help.
- Find support. In addition to brain tumor support groups and online forums, you will also need day-to-day emotional and physical help. Enlist your friends and family to share the load.
Many caregivers experience strong emotions and fatigue. This is common. Caregiver burnout happens when caregivers are continuously overwhelmed or don’t attend to their own needs. Warning signs of caregiver burnout are similar to depression and include:
- Attitude changes, including anger, hostility, or not caring (apathy)
- Thoughts of wanting to hurt yourself or the patient
- Extreme guilt or shame caused by spending time on yourself
- Withdrawal from friends and family
- Loss of interest in activities you previously enjoyed
- Feelings of hopelessness
- Changes in appetite, weight, sleep patterns, and your own health
- Lack of control over emotions
You can recover from caregiver burnout by getting help, taking a break, and getting support. If you are having thoughts of hurting yourself, the patient, or others, contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or chat live with one of their counselors at www.suicidepreventionlifeline.org anytime, 24/7. You are not alone.
- American Psychosocial Oncology Society (APOS). This national resource helps people with cancer and their caregivers find counseling services in their own communities. Call the toll-free helpline at 1-866-276-7443 or write to firstname.lastname@example.org.
- The American Psychological Association psychologist locator
- The American Association for Marriage and Family Therapy therapist locator
Communicating with the care team
Brain tumor treatment often involves many different healthcare providers and facilities. As the patient’s primary caregiver, you’re a key part of the patient’s healthcare team, too. Having good communication with the patient’s doctors will lead to the best outcomes. Here are some things to know when communicating with the healthcare team:
- No question is silly or unimportant.
- There may not be answers to all of your questions. The doctors and nurses can help you understand the unknowns and how to handle them.
- You are the patient’s advocate. You are there to make sure his or her needs are met and that the solutions and treatments are the best for the patient and your family.
- If your doctors and nurses give you too much information, let them know. Ask them to summarize, or to give you the bottom line.
- To clarify information, repeat and/or summarize what the doctor or nurse is saying in your own words, and ask if your summary is accurate.
- Audio-record appointments, or ask a close friend or family member to come to the appointment with you to make sure your recollection is accurate.
- When you need more information, ask medical professionals to recommend books, articles, or websites.
- Learn all you can. The more you know about brain tumor symptoms, side effects, and care options, the more you will be able to ask about whether or not these various treatments and services will be helpful to the patient and be able to request them if needed.
- Ask to speak to a financial counselor or social worker if you have billing or insurance questions.
Navigating the Healthcare System
Three tips to help you get the most out of each appointment:
- Talk to the patient about topics he or she wants to bring up with the doctor or questions he or she wants to ask. Do the same for yourself.
- Bring your healthcare binder or app with your running list of questions, record of patient symptoms and side effects, and medication log.
- Mention brain tumor symptoms and treatment side effects the patient is having, no matter how insignificant they seem. The doctor may be able to help improve the quality of life for both you and the patient.
Impact on Family and Friends
A brain tumor diagnosis affects more people than just the patient. It has a major effect on your life as the primary caregiver, and those effects ripple out to the patient’s family and friends as well. As with any major life challenge, it’s difficult to predict how those close to you will respond. Some relationships may become strained, while others grow stronger. The most important thing is to make sure you have support, whether that comes from family, friends, professionals, or others.
Communicating with those close to you
Sharing the news
There is no easy way to share the news of a brain tumor diagnosis. Talk with the patient and decide together who you want to tell and how you want to tell them. Remember that a wide range of reactions are common.
Keeping children informed
It’s understandable to want to shield children from serious and scary topics like a brain tumor diagnosis. However, having an open conversation with children – in an age-appropriate way – can be effective in helping them cope with the diagnosis and adjust to the changes it will bring to the family. Here are some tips to help start the conversation:
- Explain what is happening in brief, simple terms
- Let them lead the conversation, and take your cues from them – some children may want to take time to process the news before asking questions
- Understand that kids’ reactions are different from those of adults – there is no “right” way to react
Managing ongoing communication
Friends and family may look to you for updates on the patient’s condition. However, sharing updates with many different people may be draining and time consuming. Some caregivers have found that asking another person to serve as the “updater,” sharing the latest information with other family and friends, can be very helpful.
Let family and friends help
Sometimes family and friends may not know what they can do to help. Next time someone says, “Let me know if there’s anything I can do,” give them a copy of this caregiver’s assistance checklist for family and friends.
When the patient is your spouse or partner
You are committed to standing by the person you love throughout the brain tumor journey, but caring for a spouse or partner comes with unique challenges. Personality and behavior changes may feel hurtful. It may be hard to accept that the person you love is now different, especially if he or she doesn’t see the changes.
- In addition to adjusting to your role as a caregiver, you may also find yourself taking on other family and household responsibilities your spouse or partner used to handle.
- It also may be difficult to accept that aspects of your relationship will change. Physical intimacy may be affected by brain tumor symptoms, treatment side effects, and caregiving stresses.
Make sure you are getting the help and support you need – both day-to-day support as well as emotional support – so you are able to accept and live with the “new normal.”
When the patient is your parent
If your parent is diagnosed with a brain tumor, the role reversal of caring for the person who once cared for you may seem strange to both you and them. Everyone handles a situation like this differently. Know that taking on the role of a caregiver can trigger anxiety, stress, and depression. To make these challenges more bearable, it’s important to ask for help from other family members, friends, and colleagues. You can also find support groups online or in person. For practical, day-to-day support, you may want to research care options.