Managing diabetes is a 24/7 job nobody wants, but they don’t have a choice once diagnosed.
Oftentimes, an overlooked—yet critical—aspect of living with the condition is that family members are also managing the disease alongside the patient. The diabetes effect spreads throughout the family. While some do a good job of tempering the impact, others struggle with what to do, what to say and how to help.
Many worry about the future health of the family member living with diabetes, as there complications associated with the disease that may impact both quality of life and life expectancy. Additional concerns stem from dietary needs. Is the patient eating too much, or eating the right or wrong things? How does a family member address this? Do they say something, and if so, what and how? The bottom line is how to best express concern and love without angering and alienating a loved one with diabetes.
Family members also worry about physical activity—it is important to know if a loved one with diabetes is exercising enough. Physical activity is known to help manage diabetes if the person’s blood sugar is in a safe range. Setting up calendar events with your loved one’s physical activities is an easy way to keep tabs on this. This doesn’t mean managing to the point of annoyance, but is a technique to ensure overall goals are attained.
The Communication Challenge
One of the main challenges for families learning to manage diabetes is communication—how talk about blood glucose, food and physical activity in a manner in which concern is genuinely expressed, without people becoming defensive or annoyed. It is important for families to discuss how they are going to communicate their concerns.
There are also times when family members feel as if they are walking on eggshells due to mood swings that occur with blood sugar highs and lows.
A question posed to a diabetic family member in the midst of a high or low may be met with indifference or an unexpected answer, which can lead to conflicts. Being aware of blood sugar levels can help avoid this situation.
When speaking with the person with diabetes about their eating habits, avoid asking questions such as, “Should you be eating that?” or, “What did you eat to make your sugar that high?”
How would you respond if asked these questions in this manner? It is far more productive to ask, “Is your sugar in range?” or, “Is there anything I can do to help right now?” Using the correct language puts the diabetic family member at ease, as well as opens the door to further discussions about how and when to step in for support and help.
Family Support and Change
How can families best help their loved one with diabetes? Most people are resistant to change. If current management habits are working, there is little need to change. The challenge comes if the habits are not working, and the family member is resistant to changing those habits.
There is no time when change is more likely to occur and have a positive impact than when someone is faced with a crisis, such as an inpatient hospital stay for complications due to diabetes. For change to really occur, family support is critical.
We need to ensure that our loved ones are taking the right steps to manage their disease. Right does not mean perfect, difficulties may still occur; right means effort and willingness to try something different. Applauding this effort and willingness can make a difference in the long-term success of managing diabetes.
It can be difficult for a person with diabetes to ask for help. This can stem from negative reactions and conflicts in the past. Asking for help can also feel like admitting weakness or incompetence in managing the condition.
Once the person is open to help, together it is important to define what help looks like and lay ground rules, such as granting family permission to monitor blood sugar levels in a non-intrusive manner. Smartphone apps and glucose meters are available that allow family members to monitor blood-sugar levels in real time.
Understanding Behavior
Apps can aid in differentiating between diabetes related behavior versus non-diabetes related behavior as blood glucose fluctuations are associated with mood swings, irritability and short temper. Once family members understand the emotional roller coaster that can accompany diabetes, they can better navigate the challenges and not take the behavior personally. Knowing an in-range number goal and developing rules of conduct help.
It is important for the person with diabetes, especially someone who is newly diagnosed, to understand that help with monitoring is positive.
It is important for family members to avoid judgment. In the case of young children, who may face added stigma in school due to their condition, a judgment-free zone is especially important. Remember, a family’s effort in diabetes management comes from love and concern—how we express ourselves when discussing management issues is key to how well our loved one feels supported.
Resources for Support
Reach out to family support groups and educate yourself about management strategies, new technologies and medicines available. If the status quo isn’t working, don’t accept it. Resources from the Juvenile Diabetes Research Foundation (JDRF), the American Diabetes Association (ADA), support groups, the diabetes online community (DOC) and other organizations such as Children with Diabetes can help. With support and revolutionary monitoring technologies, your loved one can thrive with diabetes.
Care Considerations
When peer-supported adolescents and their parents focused on education and problem-solving strategies together, the adolescents showed increases in satisfaction and the ability to communicate more calmly with their parents.
Patients in one study expressed frustration with family members “sabotaging” or offering “miscarried helping” behaviors. Miscarried helping refers to well-intentioned support attempts that fail because they are excessive, untimely or inappropriate—loved ones actually make things more difficult.
Some say stigma plays a role in dealing with diabetes, and this adds to the stress and pressure to succeed at fixing the problem.
Blame, shame and other negative feedback set back progress. Sometimes there are no clues to what has caused a problem or how to correct it. When this happens, start with empathy, understanding, even a hug.
Diabetes educators can help. Family members may believe they know best and try to take control. Family members may believe the patient is fully equipped to manage when they actually have questions and need help.
A diabetes diagnosis can bring feelings of fear and regret. When conflict arises, agree to disagree and talk later, at a time when emotions are calm. True resolutions rarely happen in the uproar of emotional outbursts. Take turns listening to each other. Show compassion when feelings are shared, ask questions and keep calm. Just saying, “I’m sorry” helps.
Conflict happens in every family. The American Diabetes Association recommends asking for a referral from the patient’s diabetes care team as a strategy for helping work through family frustrations.
Sources: PubMedCentral, Joslin Diabetes Center, British Medical Journal
