Caring for a loved one being treated for a brain tumor is a major responsibility. In addition to struggling with routine work, personal, and family concerns, caregivers take responsibility for a wide range of new time consuming tasks and health concerns.
Even though there are many rewarding experiences and joyful moments in giving care to a loved one, caregivers are likely to experience enormous stress from the responsibilities they bear. You may find it useful to hear from other caregivers who struggle daily with the same kinds of problems you face. We asked, "What advice would you give to other families in your situation?" Here is a summary of some practical advice they offered.
Learn about brain tumors and treatments. Acquiring information will ease your fears and prepare you to make important decisions.
Identify who has the primary caregiver role in the family. It is important to identify the point person in the family when it comes to communicating about your loved one’s care. A clear communication path between the patient, the family, and the health care team reduces confusion and frustration.
Develop a plan for managing crises. Create an emergency phone list of numbers, including doctors, nurses, pharmacist, family members, neighbors and friends. Include information about insurance, social security, living will/power of attorney. Arrange for emergency child care and discuss the plan with young children in the home.
Recognize that feelings of frustration and anger are normal. There is no reason to feel guilty about these emotions. You have the right to get angry, feel sad, and express difficult feelings occasionally. "Talking about it with a friend I trust or with my counselor is what has helped the most. I get to empty out all the anger and resentment. Once I’ve done that, I can feel the love rushing forward again; I’m ready and energized."
Find and use resources that can relieve some of the burden. The number of resources for persons with brain tumors, their families and caregivers is growing. Your social worker or another staff member of The Brain Tumor Family Support Center at Duke is a good place to start when identifying potential resources. See page 2 for other sources of information.
Take care of your own needs for rest, food, enjoyment, and relaxation. The more you take care of your own needs, the better you will be able to help the person you love. "A bubble bath and a good, deep belly laugh—that’s what helps me cope best!"
Share the care. Veteran caregivers agree—asking for help can be the hardest—but the most important—part. No one should be expected to manage all the responsibilities of caregiving alone. Fortunately, family members, friends, neighbors, co-workers really do want to help, but often do not know what your needs really are. You can divide the tasks that need to be done into categories (for example, transportation, errands, help around the house, respite care). Keep a master list of those tasks. When you hear, "If there’s anything I can do," you’ll be ready with an exact request.
Form a support network for yourself. The isolation of daily caregiving tasks can be devastating. Many find support group meetings a good place to find emotional support and caregiving tips, as well as information on community resources from others who have learned from experience. Stay connected as much as possible to your regular life with friends and activities that nurture you. "I’m not ‘just’ a caregiver. I am still a husband, companion, best friend, father, co-worker, gardener. Caregiving is a task—not my entire identity."
Maintain a positive attitude toward caregiving. Caregiving can have many important benefits. You can discover inner strengths, develop a deeper relationship with the person you are caring for, learn new skills, enjoy a growing sense of confidence. "To witness the kind of courage that I see every day is a true blessing. That keeps me moving forward."
Realize that your caregiving is a choice. "I have chosen to care for my husband. No one is chaining me to the tasks of caregiving. I could choose to leave at any time." Reaffirming your choice to care every day can free you to care with love instead of resentment.
Are You at Risk?
Some caregivers are more at risk than others for physical and emotional problems as a result of caregiving. These include:
- Individuals with a history of depression
- Individuals who have fewer resources for coping from the outset
- Individuals who have been caregiving for longer than six months
- Individuals who have physical problems themselves
When to Get Professional Help
Ask for help from your physician, nurse, staff member of the Brain Tumor Family Support Center, member of the clergy, or other professional if any of the following conditions exist:
- You are experiencing severe anxiety or depression.
- Communication between you and the person with a brain tumor has broken down or has become painful or difficult.
- Your relationship with the person with a brain tumor is clouded by a history of abuse or addiction.
- You are unable to manage competing personal, work, and family demands.
A Message of Hope for Caregivers:
You deserve to feel good about your choice to help. You deserve to be congratulated on your selflessness and generosity. You meet extraordinary demands with grace and compassion. We offer you our support and encouragement as you continue your journey of caregiving.
—The Staff of the Brain Tumor Center at Duke