Diabetes: Chronic Care Guidelines for Family CaregiversPosted on September 12, 2013 by ECR Louisville in Blog, Caregiver Education, Education
It’s almost become the third wheel of our relationship,” said Catherine, a businesswoman and mother of four, about her husband’s Type 1 diabetes. “It’s me, him and the diabetes, for sure.” (Catherine asked that her real name not be used due to the personal nature of this topic.)
Catherine’s husband was diagnosed with Type 1 diabetes at age 20, two years after the sweethearts were married. Seventeen years later, she says that her husband still seems to be in denial about having the disease, which can put stress on their whole family.
“His blood sugar crashed while I was in labor,” she said with a rueful laugh. “He’s been in a car accident because he passed out when his blood sugar got so low. That was scary and it affects us all.”
Type 1 diabetes, which used to be called juvenile diabetes, is typically diagnosed in children and young adults. In type 1 diabetes, the pancreas does not produce insulin, which is needed to break down sugars into energy for the body. According to the American Diabetes Association, only 5% of the 25.8 million people with diabetes have type 1.
Experts agree that with careful food monitoring, medication, insulin pumps, glucose control, and education about the common disease, that people can live long, full lives. However, just like in Catherine’s family, one person’s diabetes affects nearly everyone around them.
“It puts the caregivers in a difficult position,” said Linda Haas, an endocrinology nurse specialist and clinical nurse advisor at the U.S. Department of Veteran Affairs. “They shouldn’t have to be the diabetes police.”
Catherine agrees with this and refuses to be her husband’s “parent” when it comes to treating his diabetes. Still, she remains frustrated. “We have never traveled out of the country, and he’s not from this country originally,” she said. “I’m just terrified of what could happen if the battery on his insulin pump died or something.” This is a relatively easy obstacle to overcome by changing pumps, or with more diligent glucose monitoring, but Catherine said that her husband will not make those changes yet.
Ms. Haas recommends finding a diabetes educator for the patient so that the pressure is taken off of the spouse or other family caregiver. “Have the person with the diabetes set some goals, then the spouse or caregiver can become the cheerleader and not the policeman,” she said. She recommends finding diabetes educators and other support at the National Diabetes Education Program’s website.
Catherine said that she has created a support network for herself with friends and her church. “It’s important for people to find support for themselves as caregivers,” she said. “But I really wish my husband would reach out more.”
When her own mother had ALS, Catherine saw her herself as a caregiver but does not see it the same way with her husband’s diabetes. “It is stressful and you don’t even realize it on a day-to-day level,” she said. That stress can be caused by anything from drastic mood swings, which she compared to bipolar disorder, to erectile dysfunction.
“He is a great dad and husband,” said Catherine. “It’s a shame he has to have this.”
And as he gets older, Catherine’s husband can be at risk for more serious health problems including heart disease, kidney disease, stroke, non-traumatic limb amputation, and more. The advice from experts like Ms. Haas for patients with diabetes is to create a team of educators and experts to not only maintain the symptoms and progression of the disease, but also to keep your personal relationships healthy.