Caring for the Caregiver
Self-care for the caregiver of a brain tumor patient is critical for both your own health and the health of the patient. Although few studies have been able to capture the unique experience of being a primary caregiver for someone with a brain tumor, we do know that caregivers report high levels of stress and poor physical and emotional health, as well as career sacrifices, monetary losses, and workplace discrimination.i
The caring professionals at the ABTA CareLine are available to answer your questions, provide support and information. Call us at 1-800-886-ABTA or by email at ABTACares@abta.org
Research also suggests that caring for someone with a brain tumor can have added burdens compared to other diseases. Following the shock of the initial diagnosis, ongoing care often requires strong coping skills to deal with both the physical and cognitive changes of the patient.ii
What are the best ways to balance taking care of yourself and the person you are caring for? The ABTA website is full of information on brain tumors as well as caregiving, so you can educate yourself as much as possible.
The Importance of Knowing You’re Not Alone
Being part of a support group helped me realize I wasn’t the only one caring for someone with a brain tumor. It also helped me understand the severity of the illness.
Peer-to-peer resources are particularly important. These groups allow you to talk in person or online with others who have gone or who are going through the same experience as you. Caregiving for someone with a brain tumor can be an isolating endeavor; connecting with others can make you feel much less alone.
- Brain tumor support groups, listed by state
- ABTA Connections, a private, online support group for patients, family, friends and caregivers of those with brain tumors
- ABTA offers opportunities for Peer-to-Peer support through CommYOUnity™ Connect. If you are interesting in participating, visit www.abta.org/get-involved/national-volunteer-network
The Resilience of Caregivers
Mary Lovely, an ABTA nurse and researcher, who also co-facilitates a support group for patients and their loved ones, is often struck by the resiliency exhibited by caregivers.
The bottom line is that everyone finds a way to cope,” Lovely says. “They find a way to get through the days because they have to, and they’re caring for someone they love, and that’s what they do.
Coping strategies can run the gamut from increasing faith and spirituality, to humor, to finding other means of self care. To begin to care for yourself, however, it’s important to understand the emotions you may experience.
Common Caregiver Emotions
Learning about, acknowledging and talking about the emotions you are experiencing during this time can be a great help. Consider the emotions expressed by other caregivers:
Anger and guilt
Sometimes I don’t know how I did it. Cleaning him, going to all the appointments, massaging him, exercising him...and then doing it all again. I’d get angry at him for getting sick, and then feel guilty for getting angry.
You may feel angry at the patient for getting ill. Many caregivers feel this, as well as resentment for the changes in their lives. On top of that, you may feel guilty for feeling angry at all.
Anger can also be directed towards the caregiver. A husband who cared for his wife described his experience with her family:
After she died they became resentful, blaming me for the way I took care of her. They still don’t speak to me, two years later.
This cocktail of relationships and emotions can be draining. Talking about your feelings with a mental health professional, in an online forum, or with others in a support group for caregivers of patients with brain tumors, can be a big help.
Grief and feelings of loss
Often, caring for someone with a brain tumor brings about grief and feelings of loss. Because learning of a brain tumor often happens very quickly, caregivers may suddenly find themselves in a situation they had no preparation for. Caregivers may grieve the loss of the life they once had with the patient, the roles they identified with (spouse, parent, co-worker), and the loss of income, either from their own inability to work because of caregiving duties, or because of the patient’s loss of work.
It was like caring for a stranger with only glimpses of the person she used to be.
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. The sweet person who loved funny movies may no longer enjoy those same types of activities. A previously caring person may not react to your smiles or tears. The patient may even become violent at times. It may be difficult to accept that the person you have loved for years is now different, perhaps forever. They may not realize they have changed, which makes the situation even more heartbreaking.
In addition to mourning the current state of their situation, caregivers of brain tumor patients often experience grief about the future: Will my loved one survive? If they do survive, what will life be like? Some caregivers and their families begin to see the future only as a source of suffering, without anything to look forward to. This feeling that the future is lost can lead caregivers to neglect their physical and emotional wellbeing.iii
A mix of emotions
The other day at the mall while I was pushing her wheelchair, I said, ‘Do you want daddy to buy you a cookie?’ We were both laughing. We cry and we yell sometimes, but we also laugh a lot.
Many caregivers and patients feel a mix of emotions, sometimes all at once. You may feel both denial and anger, joy and sadness, strength and anxiety. One caregiver felt resentment that she could not plan a vacation, but also felt relief that her life was simpler and less busy than it had been in a long time. Many caregivers feel great empathy for others who are going through the same experience, another reason why peer-to-peer support is so beneficial.
Additional Coping Strategies
As you find yourself experiencing a wide range of emotions, be compassionate with yourself as you take on the role of a caregiver for a brain tumor patient. You will need all the support and care you can get. There are many ways to care for yourself, including the following suggestions.
For your body
- Make a doctor’s appointment for a full physical workup. You may want to share with your doctor your role as a caregiver and discuss anxiety, depression, or other symptoms you may be experiencing.
- Eat healthy. Both you and the patient will need a nutritious, balanced diet to get through this journey. Read more about diet and nutrition during brain tumor treatment.
- Enjoy physical activity. Carve out some time every day for exercise to help with stress management. This can range from stretching, gardening or a walk around the block to more formal types of exercise in a gym or with a class.
- Because you may need to move the patient, or assist the patient in physical activities, it’s important to learn how not to hurt yourself. If you hurt yourself, you will be unable to care for the patient.
Learn more about how to protect your physical health in the section on safety at home.
For your mind
- In addition to keeping a log of the patient’s medications and treatment, log your own emotions and physical symptoms. Note what activities and actions help you cope.
- Keep a written, ongoing list of tasks and make an effort to accomplish one a day. Include trivial items. Checking those off may seem insignificant, but accomplishing “little victories” may give you a greater sense of control of your environment.
- Reevaluate your priorities. Caregiving can be an opportunity to de-clutter your life. Look at your obligations, routines and even relationships, and make sure that they support or nourish your life as it is now.
- Work can be a salvation for many caregivers. While it can be difficult to work all day, and then come home to take care of your loved one, work can also be an opportunity to shift your focus and experience feelings of competency and accomplishment.
For your spirit
- Find activities that lower your stress levels. A recent study found that not only did mindfulness training reduce stress in caretakers, their reduced stress levels in turn lowered the anxiety of advanced-stage cancer patients.iv Whether you practice mindfulness, visualization, meditation, yoga, or you simply make time to do things you enjoy, such as reading a book, watching a movie, or pursuing a hobby, you will improve your health as well as the patient’s. The Mayo clinic has a good primer on relaxation techniques.
- Paying attention to your spiritual life can also help lessen the effects of depression.v For many, practicing religion and being part of a religious-based community provides a sense of inner peace and contentment. Houses of worship also 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. It can be difficult to reach out. Read more about getting help from friends, family and care services, which includes information about how to communicate your needs as well as outside resources for financial and home care help.
Carol had a dinner party the other night. She spends so much time caring for her husband, and she wouldn’t have done it for just anyone, but we’re all close friends and she knows she can be herself around us. I’m glad she feels comfortable enough to invite us over. I hope it gives her time to relax and enjoy herself.
When Caregiving Gets Hard: Signs of Caregiver Burnout
Many caregivers feel intense emotions in their role. However, if you find yourself wanting to hurt yourself or the patient, or you stop feeling empathy for the patient, these could be signs of caregiver burnout.
I’m awake all night. I can’t stop thinking about this.
My life is so different now. It’s never going to get better.
I get so angry every time I have to help her complete a simple task.
I don’t care what happens anymore.
Although most caregivers experience strong emotions and fatigue, caregiver burnout is a pervasive state that occurs when caregivers are unable to get the help they need and care for themselves.
Warning signs of caregiver burnout are similar to depression and include:
- Attitude changes, from caring about the patient’s condition to anger, hostility or 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
- Feeling hopeless
- Physical changes: changes in appetite, weight, sleep patterns, more susceptible to colds/flu
- Feeling unable to control emotions
Caregiver burnout occurs for many reasons. Some caregivers are forced into their role and feel resentment. Others feel pressure from family to provide care in a specific way. Still others may feel that they aren’t doing enough to help the patient get better, even if there is little that the caregiver can control. Whatever the cause, it’s important to seek help.
When you need help now
You may find that friends or family don’t understand what you are going through. You can find support through a face-to-face support group, an online community, or an individual counselor. It’s necessary to have a safe place to work through your feelings.
The caring professionals at the ABTA CareLine (1-800-886-ABTA, M-F, 8:30 a.m. – 5:00 p.m. central time or by email at ABTACares@abta.org, answered within 24 business hours) can help provide you with information and tools. Other resources include:
- American Psychosocial Oncology Society (APOS). Call the toll-free helpline at 1-866-276-7443 or write to firstname.lastname@example.org. This national resource helps people with cancer and their caregivers find counseling services in their own communities. The service connects callers to psychiatrists, psychologists, social workers and counselors skilled in the management of cancer-related distress. If the helpline staff cannot find local support services and there is an immediate need for help, an APOS mental health counselor from the helpline will continue to counsel callers by phone while they continue to locate, professional help within the community.
- The American Psychological Association Psychologist Locator
- The American Association for Marriage and Family Therapy Therapist Locator
Caregiving is a critical and difficult job. Taking care of yourself truly can improve the quality of life for the patient. Remind yourself you are doing the best you can, and that asking for help is both necessary and brave. For more information, read more about getting the help you need or learn more about your role as a caregiver.
iDesRoches C, Blendon R, Young J, Scoles K, Kim M. Caregiving in the post-hospitalization period: findings from a national survey. Nurs Econ. 2002;20:216 -221.
iiSchubart J, Kinzie M, Farace E. Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-Oncology. 2008;10: 61-72.
iiiLucas M. What brain tumor patients and their families have taught me. American Association of Neuroscience Nurses. 2013;45:171-175.
ivLengacher CA, Kip KE, Barta M, et al. A pilot study evaluating the effect of mindfulness-based stress reduction on psychological status, physical status, salivary cortisol, and interleukin-6 among advanced-stage cancer patients and their caregivers. J Holist Nurs. 2012;30 170-85. http://jhn.sagepub.com/content/30/3/170.full.pdf+html
vLopez J, Romero-Moreno R, Marquez-González M, et al. Spirituality and self-efficacy in dementia family caregiving: trust in God and in yourself. International Psychogeriatrics. 2012:24:1943-1952.