Diabetes Burnout Is Real For Caregivers and Families
Much has been written about diabetes burnout in adult literature. Adults with diabetes become tired of all the work that must be done to care for their condition (I am now referring to adult onset or type 2 diabetes, which affects over 90 percent of the diabetes population). However, today, I feel compelled to discuss the overwhelming burden that is carried by families with children diagnosed with type 1 (and 2) diabetes.
In the beginning, after the initial diagnosis, I see that the families are in a state of shock. Their once totally normal kid now has a chronic disease with no current cure. After receiving the initial diabetes education including survival skills (how to give insulin, check blood sugars and treat hypoglycemia etc.) and a concepts class (why you are doing everything in survival skills- pathophysiology, nutritional information, psychology support, etc.), families begin adjusting to the diagnosis.
After the caregivers and child/adolescent realize that they actually can manage the condition, I see their relief – insofar that the child/adolescent can go back to school and participate in usual activities with the caveat that they must check blood sugars, inject insulin in school, etc.
Not a fleeting illness
However, this process is scary with fears of going low, making the right food choices and the dawning realization that this lifestyle is not temporary. In addition, if the child is very young, a caregiver is wholly responsible for all the necessary care and maintenance. I often hear that parents and caregivers are chronically sleep deprived from checking blood sugars in the middle of the night. Parents may be afraid to leave their young children home with a babysitter and sometimes refrain from going out for many months for fear of a problem that may occur with their child’s diabetes.
The children with diabetes may get irritated that there appears to be no end in sight. “Just how long do I have to keep checking blood sugars, giving shots, counting carbs, and planning for everything?”
I don’t have the answers for all of these issues; but I have witnessed all of these concerns and emotions. It’s not only overwhelming at times for the family and child/adolescent, but also for the diabetes care team who observe the stress that can result from constant care and vigilance. Anger and tears may accompany the family and child/adolescent in a visit with one of the diabetes team members, leaving everyone discouraged.
There is hope
Everyone keeps asking, “When will we have a cure for diabetes?” I don’t know the exact date and time. But, I do know that there will someday be an artificial pancreas that will ease the burden of insulin administration and glucose monitoring. I also know that much work is being done with packaging of islet cells so they will not be demolished by the immune system. The research will continue. In 25 years, or maybe even in 10 years, the treatment for diabetes will be very different from what it is now. I know this because 35 years ago we did not have many of the tools such as glucose monitors, insulin pens, or recombinant insulins. or devices such as insulin pumps and continuous glucose sensors, that are employed in practice today.
Diabetes burnout is a real issue and concern. In times of need, families should utilize their psychosocial teams to get them through, knowing that new technology and perhaps an eventual fix (if not an actual cure) are on the horizon.
For the families living with diabetes, know that your diabetes care team will continue to ride the roller coaster of highs and lows with your family and make attempts to ease the journey until there is a cure. We know what we ask of you and are cheering you on when your child/adolescent with diabetes succeeds with an excellent quality of life and good glycemic control.
Fran Cogen, M.D., C.D.E., is the director of the Childhood and Adolescent Diabetes Program at Children’s National Health System. She wrote about diabetes for HealthCentral.