When Diabetes Comes Home: Overwhelming lifestyle changes can affect the whole family

There are over 18 million people in the United States with diabetes, and many people with the disease are as yet undiagnosed. Chances are, you or someone you know has the disease or is at risk for developing it.

There are two main types of diabetes: People with type 1 lack the ability to produce the hormone insulin in their bodies, whereas the more prevalent type 2 diabetes stems from an insulin deficiency or “insulin resistance” – the body’s lack of ability to use the insulin it produces to break down glucose. In both cases the glucose that would normally fuel the body instead collects in the blood.

I have lived surrounded by diabetes. My mother, like 5 to 10 percent of Americans, suffers from type 1 diabetes. She is, and has been for 40 years, a model patient, managing her diet and her blood sugar with control and interest, always eager to learn more and better ways to care for her health.

My father has type 2 diabetes. He comes from a family that has been hit hard by the disease. Both of his parents, my grandparents, had type 2. His 10 brothers and sisters all have it or died from complications related to it. An aunt of mine lost her sight. Another has lost a leg. These complications arise from out-of-control blood glucose levels: very high highs and coma-inducing lows. Much of this is from a lack of understanding about the resulting complications, some from stalwart denial that what you eat when you’re a person with diabetes directly affects how you will feel and, in the long term, how healthy you will be.

Besides family history, type 2 diabetes “is associated with older age, obesity, … prior history of gestational diabetes, impaired glucose tolerance, physical inactivity and race/ethnicity,” according to the American Diabetes Association. Groups at risk include blacks, Hispanics, American Indians, native Hawaiians or Pacific Islanders and some Asian-Americans.

How families can adapt: the first steps

Bev Hoff is not only a registered nurse and dietetic technician who frequently educates people about diabetes, but also a person with diabetes. She works part time as a medical-surgical nurse at Christian Hospital Northeast in St. Louis and part time as an inpatient diabetes educator (while she works toward becoming a certified diabetes educator). She has been actively involved in the American Diabetes Association’s Camp EDI, serving as the camp’s nutrition coordinator for 10 years.

Hoff said that when a person with diabetes is first diagnosed, the whole family faces the challenge together. It is essential that people with diabetes and their families visit with a dietitian.

Hoff said, “In the beginning, it's vital for the dietitian to thoroughly understand your usual eating habits, so a meal pattern [and medication regimen, if needed] can be tailored to [the patient’s] particular needs. At this time, it's important for the patient and family to be honest about usual food choices, favorite places to eat out [and how often], usual snack choices and how it all fits into school, work or travel commitments. Using that information, a nutrition professional will target the habits that need modification [either to adjust eating time or to incorporate more healthy choices].”

Susan Lukwago is a registered dietitian with the St. Louis County Department of Health. She said the first thing a family must do when a family member is diagnosed is to “recognize that the introduction of diabetes into an individual’s life means the introduction of diabetes into that individual’s family life. The second step in adapting to a diabetes-friendly lifestyle is to know that in the 21st century, a diagnosis of diabetes is not a death sentence. There are many supports – nutritional, physical, emotional, family – in the community to assist you in adapting to a diagnosis of diabetes.”

Read the label

One of the most important habits the family can develop is reading food labels. New words in the family’s grocery shopping vocabulary become glucose, sucrose, fructose (look out for those words ending in “–ose”), corn syrup and honey. Beware of advertising phrases such as “no added sugar,” sometimes indicating that natural sugars are present.

The family can help by doing the shopping and preparing meals that allow for following the dietary guidelines that suggest consuming at least five servings of fruits and vegetables (or more), three servings of low-fat dairy products, whole grains, low-fat meats and at least six glasses of water a day (if not more). Lukwago said, “If there are foods that one or one’s family enjoyed eating before someone was diagnosed with diabetes, examine the label, the nutrition content – if it is a recipe – and incorporate it into the day.” The daily diet can be adjusted to accommodate favorite foods in small portions, if the person with diabetes plans ahead.

The myth of the pantry purge

Families twho are introduced to diabetes at home sometimes begin with a show of good faith by ridding pantry and cupboards of all the unhealthy snacks and sugary goodies the person with diabetes must learn to avoid. While the effort is admirable and certainly hearts are in the right place, it’s not a practical solution.

The strategy breaks down because it just doesn’t last. The person with diabetes will have to learn to make the right food choices independently at some point, so obviously having the right choices available and readily at hand improves the ability to make good choices. Lukwago advised, “Diabetes is for the rest of one’s life and one’s family’s life … radical changes will not stay.”

Smaller adjustments, like finding a diet soda everyone likes, stocking the home with an artificial sweetener and adjusting family recipes to be lower in fat, sugar and sodium have more staying power and are easier to adapt to for the whole family.

Striving for a “can-do” attitude

“Because diabetes is a chronic, life-long condition, it can lead to denial and depression,” Lukwago said. “Some people with the disease deny what it really means and do not take care of themselves.” Older people with the disease sometimes feel as if they are being deprived and are frustrated by lifestyle changes. Younger people have the same issues compounded by the problem of being “different” – after all, children and teenagers have difficulties with individuality even without adding in a disease.

Hoff said, “I think everyone with diabetes should have short-term goals, like walking a mile in their subdivision, and long-term goals, like dancing at a grandchild’s wedding, to help them get back on track when the going gets tough.” Encouraging a “can-do” attitude is important, but also be aware of when the person with diabetes feels overwhelmed and is truly depressed. That way, he can get the needed help and support.

There’s help for individuals and families
Both Hoff and Lukwago pointed to resources such as the American Diabetes Association and the Juvenile Diabetes Research Foundation for support groups, educational programs, research trials, nutritional information and recipes. “I also recommend those in rural areas contact the local University Extension Service; they usually have a home economist who can assist with adapting family recipes,” said Hoff.

Lukwago reminds people with diabetes to use their physicians as a resource and seek out a certified diabetes educator for nutrition help. “All the hospitals in the St. Louis area have diabetes self-management support groups. Calling and meeting with, and talking with a group of people with diabetes and their families and other support, can be the most wonderful thing. One will be surprised how many other people – in your own community – have diabetes or are living with someone who does,” she said.