It wasn't that Steve Gudelunas was being obstinate about his type 2 diabetes. “I just didn't take it seriously,” he admits, “because I had no real physical symptoms — nothing hurt or really bothered me.”
Steve, 51, of Milmont Park, PA, was diagnosed with pre-diabetes in 1996, the same year he suffered his first heart attack. A manufacturing engineer, Steve had suspected diabetes might catch up with him, since it runs in his family. His physician initially encouraged changes to his diet and increased physical activity to control his blood sugar, but “I was not really good about it,” he confesses, adding, that he “still needs to lose a bit.”
He suffered a second, more severe, heart attack in 2006, and when oral diabetes medications were no longer effective, his doctor prescribed insulin shots once a day at bedtime, a treatment option he'd previously resisted. “I'd say, ‘Nah, let's keep trying this or that. We'll do more blood tests later,’” remembers the once-procrastinating patient.
His wife, Dee, a patient care representative at Crozer-Chester Medical Center in Upland, PA, understands diabetes. “I sometimes wish I didn't know as much as I did.” Her spouse of 28 years goes all out—for a while—loses weight and gets fit quickly, then slacks off. Dee assumes a coach's role, and remains vigilant about overseeing his nutrition and reminding him to “check that blood sugar.” She's a caregiver on a mission and admits, “I do my preaching. When I'm not able to let it be, I have a conversation with myself: ‘You have to stop.’ I don't put myself on a pedestal, but I'm trying to help keep him on track.”
She knows that for Steve, “after a while it gets old. I don't want to start arguments with him—we were on a rocky road for a while.” She'd even think, “This marriage of 20 years is going to end. There was constant nagging as I tried every way I know, even saying, ‘You know what? I don't really care. Do what you want.’”
Caregivers come in all shapes and sizes: spouse, parent, relative or friend, and many take care of the nearly 21 million Americans who have diabetes.
Despite their best intentions, “You can't make people make changes,” cautions Cindy Lamendola, M.S.N., Nurse Practitioner and Research Coordinator at the Stanford University School of Medicine, Department of Cardiology in Stanford, CA.
“Resistance to making change is very complex, with multiple layers including one's culture or perhaps fears.” Experts have even described “The Three D's”: denial, depression or defiance, which can accompany any chronic health problem. For Steve, there's no denying it was denial, some depression and a pinch of defiance too.
We all should do physical activity, watch what we eat, monitor our cholesterol and blood pressure, says Lamendola, but the needs of people with diabetes are more immediate since consequences are major when they don't comply. She urges caregivers not to scare, but to inform.
Here's some useful information a caregiver could start with: 65 percent of deaths for those with diabetes are due to heart disease and stroke (or macrovascular complications) and adults with diabetes have a heart disease rate between two to four times higher than nondiabetics. When glucose levels aren't well controlled, people with diabetes are also prone to developing microvascular damage to eyes (retinopathy), kidneys (nephropathy) and nerves (neuropathy) that can decrease quality of life.
When patients, caregivers and healthcare providers work toward tight control of blood sugar levels, patients with diabetes may take control of healthier, happier and more productive lives, says Lamendola, with reduced risk of either macro- or microvascular complications.
Like many caregivers, Dee is walking the tightrope between not wanting to continually badger her husband and not wanting to see his health deteriorate, says Barry J. Jacobs, Psy.D., of Springfield, PA, author of The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent (Guilford Press). He's also Director of Behavioral Sciences, Crozer-Keystone Family Medicine Residency Program. “When the person with diabetes isn't making the same efforts, the caregiver asks, ‘;Why the heck am I trying so hard?’ Conflict can result.”
A diabetes diagnosis is a heavy load, he agrees, “then add on the directives of ‘change your diet, lose weight, get physically active, lower your blood pressure and check your blood sugar three times a day.’” the caregiver hopes his or her loved one “will just snap to it,” says Jacobs, “but most people take a year to really adapt to necessary changes.”
A well-intentioned caregiver suddenly barking a list of orders appears to “take the reins” from the patient, contributing to despair — maybe even depression. Encourage your loved one to go step-by-step, suggests Jacobs, making wise choices, to get to where he or she eventually needs to be.
Different ages present different challenges. Teenagers, for instance, are already trying “to become their own person,” says Jacobs, and “if you tell them, ‘Do this, do that,’ more often than not, the teen will buck advice entirely as a way of maintaining self-control.” For instance, a teenage girl who doesn't want to gain weight may skip insulin doses.
“An elderly parent may react with defiance and say, ‘I intend to live the way I want to live,’” notes Jacobs. No matter how bossy they were when you were growing up, many older parents resent being bossed around by their kids — even when it's for their own good.
Diabetes is a family issue too, says Jacobs, not just an individual issue. “The person who eats a big meal with alcohol and a slab of cake, whose blood sugar rockets up to 400, and then ... falls asleep—that has implications for everyone in the family.” They worry—“Will he be all right?”—and they stress out—just like Dee does.
In his practice, Jacobs helps family members “negotiate this give and take, and deal with consequences with one another. People have opportunities to make choices better for them and those around them.”
DON'T BE THE FOOD POLICE
It's a delicate balance, and diabetes control is not measured by bread alone. “The measurement of how well someone is doing is based upon metabolic outcomes, not what the person is eating,” says William H. Polonsky, Ph.D., C.D.E., founder and director of the Behavioral Diabetes Institute in San Diego, CA. He urges caregivers to take it easy to help keep patient stress and blood glucose levels in line. Caregivers should avoid becoming the dreaded “diabetic police,” warns Polonsky.
Some patients who don't manage their blood glucose levels as well as they could believe “there's nothing they can do about diabetes, that it will take its toll,” says Polonsky. “That's just not true.”
Patients win by following the treatment plan the doctor has recommended. Resisting the doctor's recommendations is the leading cause of such diabetic complications as blindness, limb amputation and kidney failure. “Well controlled diabetes is the leading cause of nothing. With proper care, odds are good you can live a long and healthy life,” insists Polonsky.
Admitting that “loved ones can drive you crazy ... because they do love you,” Polonsky urges patients whose caregivers have gotten too, um, over-the-top to get creative and devise a distraction. “Give your loved ones something to do to be of help—instead of just telling them to stop bugging you.”
Case in point: “A woman with diabetes silently wished her husband would go walking with her, instead of telling her to [go on a walk by herself]. She worried that she walked too slowly for him, but finally, she asked. He was more than willing [and would] wait for her or walk ahead and come back. Now, both are on the same side.”
Steve knows “it's a battle, but you live it day to day.” He is staying motivated to lose weight by educating himself about diabetes, and by relying on his own personal support group – his endocrinologist, cardiologist, dietician, son and wife. For her part, Dee remains committed, her eyes focused on the prize of Steve's good health.
“My big plan was to sit tonight and have another talk,” she says. “I'm going to make it work and not give up.” She'll start by suggesting that both she and Steve take a walk—together. “He comes home, he has a stressful job that he loves, he's tired and it's easy to say, ‘You should go out and walk.’” Now, joining forces, she'll tell him, “I'll go out and walk with you.”
Proving she's in it for the long haul, she attended cooking class with him, and together, they discuss different menus, with attention to calorie and carbohydrate counting. Her actions speak volumes, plus she's a believer.
“I give him a lot of credit,” says Dee. “I just know he can do it.
© 2007 American Heart Association, Inc.