There may be an adjustment phase after your child’s unexpected diagnosis or hospitalization. During this time, it is easy to forgot about tending to your own physical and mental well-being when the focus is primarily on your child’s medical care. However, it is important to take care of yourself and maintain a positive attitude. This means arranging some personal time, getting enough sleep, eating balanced meals and finding an outlet for stress whether it is exercise, sports or meditation.
The article "Coping Tips for Caregivers: A to Z" gives practical advice about how to deal with the long-term stress of caring for someone with heart disease. Effective ways of coping with the stress of caring for someone with a chronic illness include educating yourself on the disease, finding a support group, and counseling for you and your family
Educate Yourself on the Disease
Gathering your own information via the Internet or local library may ease some fear of the unknown and allow you to be realistic about the future. Learn everything you can about pediatric cardiomyopathy, your child's diagnosis, tests that have been or will be performed and available treatments. CCF offers a wealth of information in the About the Disease section and Educational Materials page.
Find a Support Group
Seeking the advice of other cardiomyopathy families can be encouraging and comforting. Connecting with others who have been in the same situation is especially helpful in the beginning stages of diagnosis and on a long-term basis. CCF offers various family support services, including a private on-line community, Facebook groups, and family matching. For more information, visit CCF’s Family Support Services page.
During stressful times, your relationship with your spouse and your other children may be affected. Maintaining a solid, caring family unit requires spending quality time with the important people in your life and keeping the lines of communication open.
If you or your family needs additional support, working with a counselor experienced in working with families affected by chronic illness can be helpful. Counseling may involve the whole family or an individual and can either be private or in a group. Contact your health insurance provider to get service approval and a list of qualified marriage, family and child counselors.