I was so moved by Ann Bartlett's paean to her beloved mother that I wanted to discuss the importance of the caregiver(s) of those with diabetes. These "significant others" are so intimately involved in the day-to-day management with their charges that they become the "expert managers." I extend the vast net of caregivers to those helping to manage their children, spouses, parents and loved ones. I am not including the healthcare professional team in this ode.
After diagnosing a child with diabetes, I am always amazed (and emotionally drained) by many of the responses of the caregiver (usually the parents in my practice). After the initial shock, denial, and bargaining (which often occurs incredibly rapidly-less than 24 hours and often waxes and wanes over the coming months), it is essential for the caregivers to move on to the next stage of acceptance (to some extent) to adequately care for their child at home. Thus, survival skills must be taught: blood glucose monitoring, insulin injection technique, observation of behavior (highs and lows), ketone testing, etc. Our diabetes nurse educators teach these skills in 6 to 8 hours and the child is then sent home with the caregiver. I can only imagine how scared my caregiver parents must feel when they go home, when only two days ago everything seemed to be normal.
As a parent of a 26-year-old young man, I know about the anxiety a parent feels even with an intercurrent illness, let alone a chronic one. (It doesn't matter if you are a healthcare provider when your child is ill-we behave just like everyone else!)
There appear to be several consistent caregiver adaptations when confronted with a new diagnosis of diabetes.
- Accept the new normal (one of my patient parent's term) and adapt...quickly to the new regime. The child goes back to school in the next few days after the caregivers meet with the school. Vacations are not cancelled and strategies are planned. These families work with the medical staff as a team to jointly manage their child/teen.
- Along with adaptation to the daily routine, many caregivers turn to the Internet for support and advice to learn the vast amount of knowledge needed to be internalized fast (along with the materials that the medical team has provided). Outreach and support are available including research opportunities, support groups, blogs, and others. Caregivers reach out to the Juvenile Diabetes Research Foundation, American Diabetes Association, and Children with Diabetes web sites etc. to learn as much as possible and be proactive. Many caregivers direct their energies to raise money for research in finding a cure for type 1 diabetes; others employ philanthropy to fund centers for improved diabetes care in the present. In both situations, there is an outward and energized response to do something proactive!
- Not every caregiver is ready or has the personality to jump in and assume these new responsibilities. Indeed, this is may be the time to enlist support from the psychosocial diabetes team members to help cope with what appears, and often is, overwhelming.
- The last situation is one in which the caregivers are so overwhelmed that they leave all the diabetes care management to the child/teen (obviously this would be impossible in a toddler or infant). This is not a good idea, as the management of diabetes requires a supportive caregiver(s) to work as a team with the child/teen. Comorbid caregiver problems such as depression or anxiety often show up during these times of overwhelming stress and should be addressed to allow care for the caregiver, as well as care for the person with diabetes.
After several months and support from the healthcare team, most caregivers become extremely well educated and invaluable to their child/significant other and assist in future management. Indeed, I rely on my caregivers (and patient) to help direct my outpatient diabetes management in terms of specific needs unique to the patient and family. I have become a huge fan of the caregiver who assists in the daily management of a family member. It is my view that these caregivers have become nearly altruistic in their desire to do the best they possibly can for their child/teen/spouse/parent/significant other. The amount of attention to detail, especially with a child who is not independent, can become insurmountable and overwhelming. Hence, it is essential for the caregiver to be cared for by those who love them as well. My role as a physician and diabetes educator is to not only try to provide the best possible diabetes care during visits and phone calls for the child/teen with diabetes; but also to be as emotionally supportive to the caregivers who spend the other 23 hours/day/7 days/week and 365 days/year with their charges. So, along with Ann, I wish to honor all of the diabetes caregivers who help me and my diabetes team to do our best.
If you're in the DC area, be sure to purchase a ticket to the April 25 game between the Washington Nationals and Los Angeles Dodgers and support children with diabetes!
Published On: April 20, 2010