Whether you’re the mother of a child newly diagnosed with type 1 diabetes, the husband of a spouse who recently developed type 2 or someone whose aging mom suddenly needs help monitoring her blood glucose (also known as blood sugar) and delivering insulin, you all share something in common. Like the millions of people in the United States who help care for a loved one, you’ve been cast into the role of caretaker.
You’re not alone if you’re a new caregiver feeling like you know next to nothing about diabetes.
Newly anointed caregivers of people with diabetes can be forgiven for looking a bit like panicked deer in the headlights. You’re probably scared, overwhelmed and unsure of what to do next. Research from the National Alliance for Caregiving and AARP found that almost 70% of people who are charged with helping care for a person with diabetes rated themselves as informed about the condition, but only a quarter reported being knowledgeable from the get-go.
Often, new caretakers assume that because their loved one is really, really sick now, and that it might be impossible to manage. Luckily, that’s very much not the case. Here’s how you can learn what you need to know to help your loved one manage their diabetes.
Right after receiving a diagnosis, people with diabetes are urged to enroll in a Diabetes Self-Management Education and Support (DSMES) course to learn the ins and outs of managing their disease on a daily basis. Caretakers can benefit from tagging along. Find an American Diabetes Association-recognized program 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.
Find yourself needing more than just an annual refresher, or missed your loved one’s last appointment? Try 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, such as 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. But hang in there—be sure to 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 son with type 1 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. By attending those 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.
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 following a diabetes diagnosis. After that, it covers two hours per year, including additional hours if a doctor requests it and specifies any changes in condition. Most private insurance plans offer similar 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% of respondents said they used the Internet for diabetes information—and 63% had a hard time determining which sources were medically sound.
To avoid confusion, stick with expert-approved sites such as KnowDiabetesbyHeart.org, DiabetesFoodHub.org and InsulinHelp.org.
Caregivers can unintentionally morph into “the diabetes police,” offering 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? Keeping the lines of communication open is key. Have frequent conversations about what’s agreed upon in the relationship. Ask yourself: “When can I, as a caregiver, step in?”
Consider putting it in writing. Some caregivers prefer 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 can help you set boundaries so you can support each other without nagging.
Take 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 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.
At the end of the day, if you’re not caring for your own needs, you’re not going to be any good to the person you’re caring for. So be sure to take care of yourself, too.