Fighting Diabetes as a Family
When her husband's chronic illness began to spiral out of control, author Carolyn Starks figured out how to help her children deal with their fear while getting her spouse the care he needed.
We were eagerly waiting in our hotel room for my husband, John, to finish showering so that we could head to the amusement park. My tween daughters started yelling "Hurry up!" over the hiss of running water. But as I finished my cheap shot about him taking longer in the bathroom than a woman, my heart sank.
It suddenly dawned on me that my husband, a type 1 diabetic, might not be taking his time in the shower but languishing there. He could be suffering from low blood sugar, which would render him unaware of where he was, confused and unable to help himself. My pulse was racing, my hands were shaking, my thoughts snowballing. I opened the bathroom door, but he slammed it shut. I heard loud banging, as if he were punching the wall. I opened the door again and found him in a grand mal seizure. That dreadful sound was his head knocking against the tile wall.
"Is Daddy going to die?" my younger daughter, Natalie, cried out.
"Daddy's going to be fine," I answered, way too cheerily.
I embraced him in a bear hug, and then dragged his soaked, flailing body out into the carpeted foyer, where my daughters saw their dad, for the first time, naked and frail. I ran to the lobby for help, leaving my daughters stock-still, staring at their defenseless father.
And so began Cecelia and Natalie's baptism by fire into the new reality of their dad's diabetes.
It's serious enough that it could kill him...but it probably won't...but be on guard just in case he passes out and you have to help him...but we can't tell you when, or if, that will happen again.
After the paramedics left, we sat our daughters down, looked deep into their wet eyes and explained what had happened. We encouraged them to share their feelings. My younger daughter piped up, saying how worried she was about him. His response: "I'm fine." After all, what do you tell your children when their father has a pernicious disease that lets him look—and in fact be—perfectly healthy most of the time, but that can strike him down at any moment? I wanted to counsel them and cancel the outing. But I followed my husband's lead and decided we could skip the emotional roller coaster and ride a real one instead at the amusement park.
My daughters grew up learning about diabetes in uncomplicated doses. They mimicked my conversations with John: "Daddy, is your sugar low?" the younger one would ask, baby voiced, her pudgy hands cupped around his face. Countless times they watched Dad prick his finger to check his blood sugar. And often they perched on the bathroom counter as he pushed the insulin needle into his hip. "No big deal," he had taught them to repeat and believe. However, they never wanted to talk about the disease. I couldn't even get them to say the word "diabetes."
And there was much we kept from them. They didn't know their dad had, on several occasions, suffered blood sugar levels so low that he either couldn't communicate or lost consciousness. Our family doctor wasn't ever too alarmed, because my husband's A1C test—which measures a diabetic's average blood glucose control for the past two to three months—was always very good. We asked about consulting an endocrinologist, a specialist in hormone imbalances like diabetes, but our doctor thought it wasn't necessary. He gave us the name and number of a diabetes educator, but my husband didn't want help from somebody who (a) wasn't a doctor or (b) didn't have the disease.
Our hotel room emergency pushed us to demand help. Since our insurance company requires referrals to specialists, we desperately searched for a new family doctor willing to write one. On the way to an appointment with a new M.D., I repeatedly stated our mission: "We are not walking out of his office without a referral to an endocrinologist." My husband agreed. Twenty minutes later, we walked out empty-handed. When I asked why we couldn't see a specialist, the doctor pointed to the framed photos of his prized patients: professional athletes. They trusted him, so we should too—even if they didn't have diabetes. We left, my blood pressure hitting an all-time high.
About a week later my husband passed out in the kitchen while getting breakfast ready. Our daughters found him unconscious on the floor as I was giving him emergency glucose and talking to a 911 dispatcher. His blood sugar level was 17. (The normal range is between 70 and 180.)
Later that afternoon, my normally calm husband anxiously sought help from our family doctor. The few times he had previously suffered low blood sugar, we could usually figure out why it happened. It was often due to an error in the amount of insulin he had injected. But two unexplained life-threatening emergencies within 10 days were uncharted, terrifying waters. The doctor had an explanation: My husband could have accidentally injected insulin into a vein, instead of fat, dramatically lowering his blood sugar level. While this was plausible, John still wanted to consider trying an insulin pump—a programmable device the size of a pager that delivers insulin continuously through a tube inserted in the body—which required a referral to an endocrinologist. Once again, the doctor refused his request.
On his way to the hospital for yet another blood test, my husband called me with the "no referral" news, to which I responded by shouting obscenities. Then I called the doctor's office. A polite secretary asked me to leave a message, but I could barely speak through sobs: "You ask the doctor how he would feel if his children saw him pass out and nearly die in front of them!" He never returned my call.
Fueled by a tankful of anxiety, I pressed on. I had heard about a diabetes support group in our town, and since my husband couldn't attend due to work, I towed my daughters and their coloring books along. I had forgotten one of the golden rules of parenthood: Your children hear, if not feel, everything you say. My way of dealing with my own fears about my husband's health was to obsessively ask him to check his blood, badger him to tell me his blood sugar level and panic when the levels were off. In essence, I had reduced him to nothing but a number—which was unfair to him, the kids and me. He is obviously so much more than that to all of us.
Inside the small church basement, we were warmly greeted by a mother who said she'd started the group because she couldn't find much support for herself and her 9-year-old diabetic daughter. It was here that I learned diabetics should not take insulin before a hot shower, as my husband had done both times before those two incidents. (The heat escalates blood flow, causing the drug to be absorbed faster.) But my most treasured takeaway was the name of a highly recommended endocrinologist. I sighed with relief as I wrote it down on a scrap of paper. Weekly my daughters and I returned to the group, absorbing encouragement while they played or colored with diabetic girls and boys brought by their parents. I was teaching my girls, through my actions, to seek help from others when they are lost and to not live in isolation when they are afraid.
Meanwhile, my husband found a general practitioner who, after hearing about his recent emergencies, immediately wrote him a referral to an endocrinologist—the name read off my tiny piece of paper. The specialist reassured us that my husband could gain back control of his disease through education and an insulin pump, if he wanted one. Finally!
My husband not only learned how to use the pump but also began counting carbs, preparing for blood sugar spikes instead of reacting to them, and getting help for the depression that stemmed from coping with a chronic illness. He realized that despite having diabetes for three decades, he had been undereducated—and perhaps unwilling to learn new methods for controlling the disease. But now his emotional and physical health are better than ever. These days we have funny names we use with the girls for blood testing, and make a contest out of guessing the number on the meter when my husband does a check. We are even considering taking part in a federal study that tests our daughters annually for diabetes.
This doesn't mean our battle is over. We fight the disease every day. I've heard it said that when a member of a family has a chronic illness, everyone in the family has it. Is it horrible for me to think that sometimes we have it worse than he does? When I ask my husband how he can live with the disease, he says that after 34 years he feels he has power over it. I decided that we needed to be empowered too. I showed my girls where we keep emergency glucose tablets and gels, then placed additional meds around the house where they could see them. We posted a sign emblazoned with "911" by the phone with the sentence "My dad is a diabetic and passed out." We role-played and practiced our emergency response. We talked about the days Dad passed out, but focused on the positives.
"I know that was scary. But look at us! We handled it, didn't we?" I said to them. "We knew what to do to help. I am so proud of us. And Dad's okay. This might happen again, but we know we can handle it because we already have."
"But it probably won't happen again, right?" my older daughter, Cecelia, asked, her blue eyes wide.
Every mom instinct I had wanted to skim the surface. But I was speaking with young girls who could spot a lie before a single word is spoken. I told them that we trust Daddy to take care of himself. But we can never, ever trust diabetes.
The body halts or decreases its production of insulin, making insulin injections or a pump necessary to stop glucose from building up in the bloodstream. This disease is usually diagnosed in childhood. Warning signs can include weight loss, frequent urination, rapid breathing or loss of feeling or tingling in feet.
Type 1.5, or LADA
Often misdiagnosed as type 2, latent autoimmune diabetes in adults occurs when the body stops or lessens its manufacture of insulin—basically a slowly progressing form of type 1.
Most people with this kind are overweight, as fat cells can make it more difficult for the body to process insulin. The result is an increase of glucose in the bloodstream that requires medication to alleviate. Previously diagnosed in adulthood, it's now being diagnosed in children due to the obesity epidemic.
Up to 18% of expectant mothers have high blood sugar during their pregnancy. The condition usually goes away once a woman gives birth, but it increases her risk (possibly her child's too) of developing type 2 diabetes later in life.
Originally published in the November 2012 issue of Family Circle magazine.
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