How to Get Up to Speed on Diabetes Knowledge
A loved one has been diagnosed with diabetes—and you know nothing about the condition. Here’s how to get up to speed, and fast
At first glance, the mother of a child newly diagnosed with type 1 diabetes may appear to have nothing in common with a husband whose wife recently developed type 2 or a woman whose aging mom suddenly needs help monitoring her blood glucose and delivering insulin. But they’re similar in at least one way: Like the estimated 43.5 million people in the United States who help care for a loved one, they’ve all been cast into the role of caretaker.
Newly anointed caregivers of people with diabetes can be forgiven if they look like “panicked deer in the headlights,” says Veronica Brady, PhD, MSN, CDCES, BC-ADM, a certified diabetes care and education specialist at the University of Texas Health Science Center at Houston. They’re scared, overwhelmed, and unsure of what to do next. One reason for the anxiety? New caregivers often know next to nothing about diabetes. Research from the National Alliance for Caregiving and AARP found that 69 percent of people who are charged with helping care for a person with diabetes rated themselves as informed about the condition, but only 25 percent reported being knowledgeable from the get-go.
They often “automatically assume that this person is really, really sick now, and that it’s going to be impossible to manage,” says Nicole Bereolos, PhD, CDCES, a clinical psychologist and certified diabetes care and education specialist in private practice in Dallas. Luckily, that’s very much not the case.
Have you been cast in the role of diabetes caretaker? Keep reading to see how you can learn what you need to know to help your loved one manage this chronic disease.
Right after receiving a diagnosis, people with diabetes are urged to enroll in a diabetes self-management education course to learn the ins and outs of managing their disease on a daily basis. Caretakers can benefit from tagging along, says Brady. (Find one in your area.)
Bring a notebook and pen, and ask plenty of questions. For instance: What if your newly diagnosed 6-year-old is afraid of needles? How do you recognize the signs of high and low blood glucose in an adult with Alzheimer’s disease? What should your wife pack in her go bag in case of an emergency? What is a glucagon kit, and how should you use it?
The American Diabetes Association (ADA) recommends that people with diabetes attend a diabetes education course following diagnosis and again during the following life stages: once a year, to gauge progress; following a new health complication (such as a heart attack) or a change in circumstances; and during major transitions in care, such as moving to a nursing home or changing insurance. It’s a good idea for caregivers to attend these follow-up sessions, too. “When there are changes to the diabetes management plan, caregivers often have questions about what they need to do,” says Brady. “Attending the education sessions at these intervals ensures that both the caregiver and the patient are receiving the same information.”
Find yourself needing more than just an annual refresher, or missed your loved one’s last appointment? Brady suggests checking with local hospitals, which often provide free diabetes-related education classes to the community. Or enroll in the ADA’s free Living With Type 2 Diabetes program, which teaches the basics of diabetes management. As for conditions linked with diabetes (say, thyroid disease or depression), specialists involved in treatment might offer informational seminars that you can also ask to attend.
Even with this extra education, it might take a while to completely get up to speed. Hang in there, says David Miller, RN, CDCES, a certified diabetes care and education specialist with Community Health Network in Indianapolis. “Take baby steps, be patient, and give yourself some grace.”
Visit a Dietitian
“What can I eat?” It’s probably one of the first questions a person with diabetes asks, and as a new caregiver, you may be wondering the same. Can your type 1 son snack on crackers? Should your father with type 2 diabetes give up his morning oatmeal? And how does this whole carb-counting thing work?
Learning how to help your loved one follow a diabetes-friendly eating plan is key. That’s where a registered dietitian comes in. “It’s very helpful for patients to have a support person with them when working on making behavioral changes,” says Ayana Davis, MS, RD, a registered dietitian at the University of California–San Francisco. By attending sessions, you can learn alongside your loved one and get answers to your food-related questions. A dietitian will discuss healthy eating patterns—from portion size to food choices—while taking into account factors such as specific health needs, tastes, and lifestyles. And if you’re foggy (or totally lost) when it comes to carb counting and the “plate method,” don’t worry. A dietitian can walk you through all of that, too.
“Caregivers could easily feel overwhelmed by the prospect of feeding a person with diabetes, but a [registered dietitian] can help make the meal-planning process manageable and enjoyable,” says Holly Willis, PhD, RDN, LD, a registered dietitian nutritionist at the International Diabetes Center in Minneapolis. “Food, of course, needs to taste good, but it also has tremendous potential to improve diabetes outcomes.”
When can you join in on an appointment with a dietitian? You may have a few opportunities, depending on your loved one’s health care coverage. Medicare covers three hours of physician-prescribed medical nutritional therapy in the first year followinga diabetes diagnosis. After that,it covers two hours per year, including additional hours if a doctor requests it and specifiesany changes in condition. Most private insurance plans offersimilar coverage, but check with your loved one’s insurance provider first for a complete explanation of what’s offered.
Have a burning question that can’t wait until your daughter’s next visit with her endocrinologist? Think twice before consulting Dr. Google. In a National Alliance for Caregiving and AARP survey, 73 percent of respondents said they used the Internet for diabetes information—and 63 percent had a hard time determining which sources were medically sound.
To avoid confusion, Bereolos and Miller both recommend sticking with expert-approved sites such as diabetes.org and diabetesforecast.org. They also recommend being careful on social media, as many online support communities are plagued with people peddling false facts and diabetes cure-alls. “Run all information by your provider or diabetes educator because there are things people post that aren’t true,” Miller says.
Caregivers can unintentionally morph into “the diabetes police,” says Bereolos. They’ll offer unsolicited feedback on food choices, medication, and other diabetes management decisions. This breeds resentment, and when tensions run high, essential communication can fall through the cracks. How can you avoid this? “Have frequent conversations about what’s agreed upon in the relationship,” says Bereolos. Ask yourself: “When can I, as a caregiver, step in?”
Miller goes a step further, advising caregivers to draft and sign a document that outlines roles. For example, your newly diagnosed husband might pledge to check his blood glucose regularly and take medication as prescribed, and you may promise to check his glucose logs several times per week and attend his doctor’s appointments. “This helps you set boundaries so you can support each other without nagging,” Miller says.
Taking Care of Yourself
Self-care isn’t just an indulgence—it’s a necessity. Research from the National Alliance for Caregiving and AARP found that people who spend longer hours taking care of others are more likely to report stress and worsening health. And a review of studies published in 2014 in JAMA showed that caregivers who felt socially isolated, didn’t get enough sleep, and ignored stress-busting strategies such as exercise faced a greater risk for negative effects on their emotional, social, financial, physical, and spiritual health. =
“Without caring for your own needs, you’re not going to be any good to the person you’re caring for,” says David Miller, RN, CDCES, a certified diabetes care and education specialist with Community Health Network in Indianapolis.