8 Tips for Caregivers
From Diabetes Forecast
By Lindsey Wahowiak
A diabetes diagnosis can be overwhelming. As caregivers, we want to support our loved ones and help them enjoy the healthiest lives possible. But what is the best way to do that? We talked to experts—both health care providers and people who have been there—to learn what is helpful and what to avoid.
Start Your Education Now
Any diagnosis presents a learning curve. Your first and best step in becoming an ally for your loved one is to arm yourself with education, says Shantanu Nundy, MD, of Mary’s Center, a Washington, D.C., health care and social services center for low-income families.
Some people believe that diabetes is “not a big deal” or, alternately, that it’s a death sentence, so it’s important to know the facts. “As physicians, we try to debunk [misconceptions], but information coming from a trusted family member or friend is really powerful,” Nundy says. “[Diabetes is] something you can live a long, healthy life with, by managing it.”
You can ask your loved one’s health care provider about where to learn more, including books, online communities, support groups, and sites such as the American Diabetes Association’s diabetes.org.
The learning curve can be steep, says Stacey Simms, whose 9-year-old son, Benny, was diagnosed with type 1 seven years ago, but she says it has been manageable for her and him. “My advice is to take a deep breath and realize that the beginning is the worst,” Simms says. “Now it’s just our routine, and it will become yours as well, eventually.”
Take Some Time
You can learn things and make changes bit by bit, to avoid overhauling your lives based on a loved one’s diabetes.
Jessie Gruman, PhD, should know. She’s a psychologist and five-time cancer survivor who wrote a book on coping with a new diagnosis: AfterShock: What to Do When the Doctor Gives You—or Someone You Love—a Devastating Diagnosis. She suggests giving yourself and your loved one time to digest the information. “People are shocked, and they feel like their life has changed in these earth-shattering ways,” she says. “As we learn more, as time goes by, as we adjust, as we make decisions, the way we feel changes a lot.”
So don’t rush your loved one (or yourself) from mourning to acceptance. Instead of saying, “You’re not going to feel this way tomorrow,” it may be more helpful to say, “This is really scary. What are you most worried about?
Encourage Self-Care, but Don’t Be a Pest
There’s a fine line between checking in on someone’s well-being and what Gerald Strauss, PhD, a psychologist with the Veterans Affairs (VA) health care system, calls “miscarried helping”—also known as nagging.
“Though people really do want to help their loved ones with diabetes, this backfires and just sends people running in the opposite direction,” he says. Don’t pester: Explain what you would appreciate your loved one doing. Strauss suggests role-playing these requests with health care providers or a diabetes care team to make sure your approach will be well-received.
Of course, with children, you will have to supervise, so weigh how much they might be able to handle on their own, advises Anne Doyle, a member of the Diabetes Forecast Reader Panel. Her daughters both have type 1 diabetes. “Give them one task at a time, and give them time to be successful at it,” she suggests. “Also be ready to take some responsibilities back from your child if you see them struggling.”
Preteen and teenage children often need parental supervision to stay consistent with care.
Make Changes Together
Your loved one’s diagnosis probably means making some lifestyle changes. Going through that alone might feel isolating, so why not make the changes together as a team or household? Start exercising together or look for diabetes-friendly recipes together—then cook and eat them together.
“A lot of the things that improve the care for someone with diabetes are actually good for everybody,” Nundy says. “It’s always better than going it alone.” Nundy knows this firsthand: He’s helped his mom care for her type 2 diabetes.
Set Small Goals
Taking a step-by-step approach is the easiest way to make permanent lifestyle changes, says Elizabeth Koustis, RD, LD, of the VA. Doing small things, such as taking a walk after dinner, can improve blood glucose and overall diabetes management, and allow you to look at the results and reevaluate as needed. “I think that’s very motivating for the patient, and they can continue to move forward,” Koustis says.
Offer help only if you really mean it. Saying “let me do anything I can to help you” is so broad, most people won’t take you up on it. So be specific about what you’re able to help with, and offer only if you really can help, says Gruman. “There’s nothing harder than to ask for help and then have it refused,” she says. So can you give your loved one a ride to the doctor? Then offer that—it’ll be appreciated.
Work With the Diabetes Care Team
Attend doctor’s appointments and diabetes education classes together if your loved one agrees. Nundy suggests listening to what both health care providers and the patient are saying, chiming in with what you know, and asking questions to help your loved one get the best care possible. That includes making sure the health care team is complete, including, say, a dietitian or a mental health counselor, if needed.
“Often doctors don’t know that patients are having trouble with their medications or [aren’t] able to follow a diet plan, and patients are often reluctant to share this information with the doctor or simply are too overwhelmed with their care,” Nundy says. “Caregivers can advocate for their loved ones simply by listening and sharing with the doctor, and then trusting them to make the right decisions that reflect their loved ones’ needs.”
Find Support for Yourself
The best way to be a caregiver is to take care of yourself, too. “Not only does the patient feel stress, but I think it’s important to explain that the caregiver can feel the stress,” says Kathryn Leciejewski, PharmD, BCACP, who works with Strauss and Koustis at the VA. “Acknowledging it can help with coping with it.” If you can find a support group for caregivers, so much the better. Kara Wilson was able to meet other parents of children with diabetes after her son, Isaac, was diagnosed with type 1 diabetes in 2012. “It helps so much to meet others who are going through exactly what you are dealing with,” Wilson says. “We need to hug each other and take comfort in the support we can offer one another.”