I received a letter today that brought tears to my eyes. It was a handwritten note from a mother of one of my favorite early teens. Mom brings her daughter in for quarterly visits, encourages her in her diabetes care, supports her in her after school activities and provides her with a cell phone to keep in touch. However, her daughter’s A1C results do not reflect adequate BG control (10-14%). Mother is very upset after a recent download of the pump as it is now apparent that her daughter is not checking BG or bolusing when her mother is not around. Mom feels her husband and daughter are not committed to controlling diabetes, and she is alone in her quest for good BG control for her daughter.
On previous visits, we have discussed using the download of the pump, faxing it in and letting us help her review the information and give suggestions. I have spent many hours working with her daughter on the benefits of checking, all the while being alert to possible “diabulimia.” We have problem solved the school environment (she goes to a very supportive small, rural school), and discussed insulin adjustments during sports. We have even had lengthy discussions on options for wearing the pump and covers.
What I was missing was the burden poorly controlled diabetes plays on family members. The fear and guilt the parent feels when a child chooses to NOT be the model (or even close to the model) patient. When truth turns to lies. Not on all topics, but on taking care of diabetes. It’s the break in trust as well as the worry about the consequences. There is the guilt of not helping her enough, not encouraging her enough, being too judgmental or perhaps caring too much. The child might benefit from counseling to help in accepting her responsibility, but the mother may also need help and support.
Mother, father, siblings may all need assurance that they cannot take full responsibility for the choices of an older child. They can support, provide love and education, provide consequences, but they cannot BE their child. Our job as educators is not just about taking care of the child, but also recognizing the needs of the family as a whole.
What support system do you have for the families of those with chronic disease, especially those who choose to not take care of themselves? Do you refer out the patient, or the family for counseling? What tips can you share?