The unrelenting struggle of Cushing’s is an enormous challenge to face. Daily lives become filled with tests, appointments, fatigue, pain, waiting, etc… The stakes of coping with these challenges become even higher when children are involved. How do we help them cope with the complexities of living with a parent that is ill?
As parents, we are meant to be the caretakers of our children, but what happens when illness occurs and impedes our ability to perform these tasks? In speaking with other Cushing’s patients, I found that this issue is a shared concern among us.
Included here are a few quotes from others tackling this problem. Laura states, “I feel like my children are neglected, like I don’t given them enough attention/interaction. Most times I am so exhausted that I can’t give more.” Another mom, Shelly states, “They know that Mom can’t do as much as she used to, or be able to stay awake long enough after dinner to even help with their homework, most of the time. I wish I could do more with them, but I just don’t have the energy.”
Children can react to a parent’s illness and limitations in a variety of ways. As Susan, a mother of four, points out with regard to her children, “There are times when they are so compliant and do anything I ask them to. Sometimes they lash out in anger towards me. They are angry that I can’t do things with them that other mothers do with their children. They have fear and insecurity. They fear I am going to die and they will have no one to care for them.” Other children may cope with their stress through avoidance or somatic complaints.
Jayne, the mother of a 2-½ year old daughter describes how she handles the difficult times. “I always explain things. When I have panic attacks or crying spells, I explain that I am tired, like she gets at naptime and bed time. We talk about Mommy needing to stop for a minute.”
Experts say that open, clear communication is the key to aiding children in coping with a parent’s illness.
Author: Lorrie I. (Winter, 2002)
Editor’s note: The quotes used in this article were generously provided by fellow Cushing’s patients/survivors via Cushings-Help.com.