Q: I've read about kids with type 1 experiencing "diabetes burnout," but in our family, I actually think I'm the one having a tough time. How can I get my type 1 mojo back? My daughter is relying on me.
A: No one says being the parent of a child with type 1 diabetes is easy. But before you get to the point of total burnout, use the energy you have left to reach out for help with all that you're doing to keep your child healthy. I can almost promise you that an avalanche of support is out there just waiting to reach back.
The first place to look? Your partner. In families where both parents shoulder a child's type 1 care, a division of labor may stop (or lessen, at least) the emotional and physical toll your child's needs may take. While managing diabetes is not the same as caring for an infant, there are some startling similarities, like lack of sleep. If you're up all night monitoring your child's blood sugar after an unexpected low or high, you're up against the same sleep deprivation you experienced during the days of midnight feedings. And just like the emotional havoc it may have contributed to when you were a new mom, getting too little sleep now may be what's robbing you of your "mojo." Is your partner home at night to share late-night monitoring duties? If so, set up a rotating schedule of whose turn it is to stay up when needed.
In families where another parent is not available to share in care duties, do your best to find someone who is. Is Grandma nearby? Does your sister live down the street? Start to create a list of people who understand what it takes to care for your child. Often these are people who have already stepped up and offered their support -- so take it!
If you need to take a break from your child's care to keep from reaching the breaking point, there are organizations and people that provide "respite care" for parents of children with type 1 (and kids with other health issues). Contact your hospital or diabetes clinic, or get in touch with your local chapters of the JDRF and American Diabetes Association to see what's available in your area. Hiring a babysitter for the evening who is already trained in insulin dosing and blood glucose monitoring can also double as respite care (only instead of going out on the town for the evening, go to a friend's house or shut the door to your own bedroom and simply take a nap).
When you do find yourself feeling tired and frustrated, remember that around the world, countless other parents have felt the same way -- and many are just a mouse click away. Online support groups and message boards for parents of children with type 1 (like the ones found at Childrenwithdiabetes.org) can serve as important sources of peer support. Live and in-person groups may also exist in your area; ask your diabetes educator. If not, why not start your own?
Finally, don't feel timid or think it inappropriate to reach out to your diabetes team to find a family therapist to talk with…just for you. Diabetes professionals understand the pressure parents often feel in their quest to keep their children healthy. Besides lending a sympathetic ear, a therapist may be able to connect you with even more resources to help you thrive as a parent and family.
-- Jean Betschart Roemer, MN, MSN, CRNP, CPNP, CDE, is a pediatric nurse practitioner and certified diabetes educator in the Department of Endocrinology, Diabetes and Metabolism at Children's Hospital of Pittsburgh.
Disclaimer: The information in these articles is not intended as medical advice. Families should check with their healthcare professionals regarding individual care.