Caregiving
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:
It can be be stressful and overwhelming to take care of a brain tumor patient. A helpful tip is to prioritize problems and tasks based on both their urgency and their importance using a simple chart. It may be impossible to get *everything* done so prioritizing will help you focus on what is truly important.
Here is an example:
As you’re prioritizing, it can be helpful to use the “do, delegate, defer, or drop” technique:
- Do: What things are necessary for you to get done now?
- Delegate: What tasks can you give or ask others to do?
- Defer: What tasks can wait to get done?
- Drop: What things can you forget about for now?
The medical care for a brain tumor is complex, and you will likely come into contact with a large medical team. You can act as the patient’s advocate to help to ensure that the patient’s best interests are front and center at all times.
- Understand what each member of the medical team does. This includes hospital staff, clinic staff, specialists, and other healthcare professionals.
- Involve the patient as much as possible. Help to ensure that the patient has a thorough understanding of the information he or she is being given and the choices he or she must make. Help get answers to his or her questions.
- Become the chief communicator. In your role as a caregiver you may have to tackle tough discussions, whether with the patient, medical care team, family, or friends. You may also be in charge of providing updates to friends and loved ones about the patient’s condition. And if you have a medical power of attorney, you may have to speak on behalf of the patient when the patient cannot speak for his or herself.
- Learn about treatment options, including clinical trials. The ABTA is a great place to start for information on treatment options and available clinical trials. Make sure to discuss these options with the patient’s care team.
As caregiver, you will be responsible for managing day-to-day life for both yourself and the patient. This may include routine tasks around the house, such as food preparation or travel to appointments. Other jobs can include anything from creating a safe home environment for the patient to changing surgical dressings. You could also become responsible for helping the patient with personal hygiene tasks, such as bathing, brushing teeth, and skin and hair care.
Attempting to keep life as normal as possible for yourself and for the patient can be demanding. One way to do this is to simply provide companionship to one another. It can also be helpful to participate in recreational activities with family and friends whenever possible to avoid feeling isolated.
If your duties as a caregiver are becoming too much for you to handle, you may also begin to consider home care or palliative care (specialized care for people dealing with a serious illness). The focus is to provide the patient with relief from symptoms, pain, and stress while improving quality of life.
Learn more about assisted care options.
Time management tools
With all you need to handle, it’s important to manage your time efficiently. Scheduling both routine tasks (laundry, grocery shopping) as well as tasks related to brain tumor treatment (appointment scheduling, performing physical therapy exercises at home) can help you divide your time effectively.
Learn more about how to prioritize and navigate caregiving tasks.
Record-keeping
Because the patient may not be able to keep track of symptoms and treatments, it most often falls to the caregiver to become a record keeper. There are phone, tablet, and computer applications that can help with this.
People with a brain tumor often need multiple medications ̶ not just to treat the tumor, but also to manage treatment side effects. Keep a medication log that tracks all prescription and non-prescription items ̶ including over-the-counter medications and herbal supplements, vitamins, or other holistic treatments ̶ to make it easier to manage your loved one’s medication needs. In the log, write down:
- What each medication is for
- What dose to take
- When to take it
- What side effects the patient experiences
- The name of the doctor who prescribed it
Download a medication log.
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 and side effects, 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.
Learn more about the first steps to take after your loved one is diagnosed with a brain tumor.
What it Means to Be a Brain Tumor Caregiver: Understanding Your Evolving Role
Caregiver Resources
Connections Community
ABTA’s online support community, where brain tumor patients, survivors, and caregivers come together. Information about malignant and non-malignant tumors, GBM, immunotherapy and more.
Patient & Caregiver Mentor Support
Our Mentor Program offers patients and caregivers the opportunity to connect with someone who has gone through a similar brain tumor diagnosis, treatment, and care.
Navigating the Healthcare System
Appointment preparation
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.
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 learning about brain tumors and types of 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.
Mixed emotions
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 info@apos-society.org.
- The American Psychological Association psychologist locator
- The American Association for Marriage and Family Therapy therapist locator
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
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 is common.
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
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.
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.
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.”
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.