My Grandma Has ALS: Guidance and Support for Youth Coping With a Grandparent’s Illness

Learning that your grandma has ALS can be confusing, scary, and deeply emotional—especially for young people. ALS is a progressive illness that affects how the body’s muscles work, which means your grandmother may gradually lose the ability to walk, speak, eat, or move easily. For many youth, watching a grandparent change because of illness can bring feelings of sadness, worry, or even frustration. These feelings are normal and important to talk about. One of the most helpful things young people can do when a grandparent has ALS is ask questions. Understanding what is happening can make the situation feel less frightening. Parents, caregivers, teachers, and doctors can help explain ALS in ways that are easier to understand. Knowing what to expect helps youth feel more prepared and less alone. Spending time with your grandma can also become very meaningful during this journey. Even if ALS makes communication or movement harder, there are still many ways to connect. You can sit together, listen to music, watch favorite movies, look through family photos, or simply hold her hand. These small moments often become powerful memories. It is also important for youth to care for their own emotions. Talking with trusted adults, friends, or counselors can help process feelings about ALS. Writing in a journal, creating art, or participating in support groups for families affected by ALS can also help. Most importantly, remember that love and connection remain strong even when illness changes the body. Your presence, kindness, and time can bring tremendous comfort to a grandmother living with ALS.