Family Matters
By Catherine O'Neill Grace
To help your loved one manage diabetes, your family has to work as a team
There's never a good time to receive a diabetes diagnosis — but the news came to Mary Goin at a particularly difficult time. It was 1978. She had three young children and her 29-year old husband had recently been told to quit a job that was too stressful for his heart condition. Then came diabetes.
"When I was diagnosed, I was handed a little black book with diabetes written in yellow on its cover. I opened it up, and right there on the first page I read a list of complications — you're going to go blind, your kidneys are going to shut down, you're going to lose your limbs," she recalls.
Nothing in the opening pages of the booklet said anything about how to prevent these complications, Mary says. "All I knew of diabetes was that my grandmother was diabetic and kept a little silver box on a shelf with her syringe. I thought, 'Grandma had diabetes, and she died.' And I had a fit. I couldn't stop crying. I thought I had been handed a death sentence."
But with the support of family, friends, and faith, Mary not only survived, but thrived. "I took it upon myself to get out of the hospital and read up on diabetes and learn as much as I could — and there was no Internet then," she recalls. Now, 29 years later, she often tells her story to other patients with whom she works in support groups all over Virginia.
Diet and Exercise Matter
"I started cooking differently because of my husband's heart condition and my diabetes," she says. "That became our family diet, and it was healthier and more balanced. Everybody benefited from it. And my husband and I started walking together, which helped both of us."
Before long, Mary was hired to work in her endocrinologist's office. The physician was an early adopter of advances in testing equipment and treatments, and Mary was a beneficiary of his innovation.
"He kept saying, 'You need a pump,' but I Resisted" Mary says. "Then I unwrapped the first gangrenous foot that I had seen, and I said, 'You know that pump you've been talking about? I think I am ready for it.'"
Mary and her daughter, a nurse, both use insulin pumps today, and Mary leads "pump clubs" around the state for new users. She has trained patients as young as three and as old as 82 in how to use the devices.
An insulin pump provides a nonstop delivery system that closely resembles the way insulin is produced in a person who does not have diabetes. Some pumps are implantable and require surgery to put them under the skin. Most, like Mary's, are worn on a belt or hidden under clothing. Pumps are about the size of a pager.
While a pump helps maintain stable blood sugar levels, using one does not mean a patient can neglect his or her care regimen. Pump users must still follow a meal plan, count carbohydrates, monitor blood glucose levels several times each day, and keep accurate records to keep their diabetes under control. (Carbohydrates make blood glucose levels go up. Keeping track of how many carbohydrates are consumed helps keep glucose levels steady).
"You can let diabetes control your life or you can control it," says Mary. "I took control when I was young because I wanted to live to see my children grow up. I accepted responsibility for myself. Now I have grandchildren, and I want to see them grow up."
Mary credits her family with helping her stick to her resolve from the beginning. "My husband and I had only been married nine years when I was diagnosed," she says. "He has been so supportive from the beginning. We would travel and he would say, 'It's time we found a place to stop and eat.'
"It takes the whole family to manage diabetes. Everyone participates. My littlest child would say, 'Are you supposed to have that? Mama, can you eat that?'"
As Mary Goin discovered, once you learn you have diabetes, your life changes forever — and so does the life of your family.
A Life-Changing Diagnosis
John Shields was a couple of months shy of his 10th birthday when his diabetes was diagnosed. "I thought I was just ridiculously thirsty," says John, who now 24. "My mom thought I was being bratty. But it turned out I was diabetic."
In a way, John was lucky. His father, a dentist who was then serving in the Army, routinely gave his patients injections, so the thought of giving regular shots was not intimidating for the family. "I was on insulin injections until I started college and got a pump," says John, a sales representative who plans a future in nursing or diabetes education. "When I was diagnosed, I was intrigued by all the technology. As a little kid I had played with doctor kits. I saw the testing equipment and the injections and I wanted to do it myself. I thought, 'Gizmos! Awesome!'"
John gave himself his insulin injections from the beginning, but his family took on an active role in monitoring his condition. "My family definitely worked as a team," John says. "We never ate many sweets because my dad is a dentist so we didn't have much candy around the house. But my dad got very clinical and helped tally up each food I ate very, very carefully. He had a chart plotted out when I was first diagnosed."
John's mother took on the role of monitoring the timing of his daily routine — a challenge when you have an active middle-schooler on your hands.
"My mom would find a way to call me in to eat or test or take insulin from across the neighborhood. This was before cell phones. A lot of kids my age and I would be playing somewhere on the base and if my mom turned on the porch light I knew I had to come home. The word would travel from kid to kid."
When he left for college at Virginia Tech John began using an insulin pump, but he still kept very close tabs on his condition — with mom and dad checking in from a distance.
"Diabetes is a way of life," says John. "It's a lifestyle modification. Make sure you're eating the correct amount of food. Talk with your friends and family; talk with your doctor; go to a counselor if you want to. If you keep your disease under control you can have a healthy life."
Family Roller Coaster
Marta Eule, RN, BSN, CDE, clinical education manager at Liberty Medical, applauds such proactive family practices — and she knows the family dynamics of diabetes management firsthand.
"I have lived with diabetes my whole life," she says. "My father was diabetic — and noncompliant. He had heart attacks and strokes. I saw all the complications. I saw a man who was active lose his leg and live his last few years in a wheelchair."
Marta says that her experience makes her particularly empathetic. "I saw my family's ups and downs. I saw the emotional roller coaster we lived on as my father's health went up and down."
- In her work, Marta offers the following advice to families of people with diabetes:
- Learn to monitor the blood glucose just like a patient does.
- Learn to count carbohydrates as a family.
- Work together as a team on managing treatment day to day
While Marta feels that there is never a point where family can't help, it is important to allow the diabetic person to feel responsible for his or her own care. Don't be the Diabetes Police. "It's important to get the person with diabetes into support groups," she suggests. "That way they can learn from other people who are going through the same thing. Education is the key — being educated gives you the power to take control."
Dealing with diabetes is a full-time job. Family members must take care not to neglect their own health while they're caring for a loved one. So eat well, exercise, get enough sleep and find ways to deal with the inevitable stress of care giving. Your whole family will benefit. HM