By: Clay Wirestone
My mother died unexpectedly this summer. While her loss was sad and sudden, I have many reasons to celebrate her life and the guidance she offered me. When I was diagnosed with diabetes as a child, she took it upon herself to learn the ins and outs of diabetes care. For most of the next decade, she oversaw my treatment.
I’m sure my story isn’t unusual. As people with type 1 or type 2 diabetes, we all depend on the magical people who give us time, attention, and care. These caregivers help us recover from the shock of a diagnosis. They learn about our disease and then offer support and understanding for years (or decades) to come.
Perhaps your caregiver was also a mom. Perhaps your caregiver was a dad, grandparent, or spouse. Whoever they were, the bond you share with them is a special one. You have put your life — your health — in their hands. That’s a bond not easily forgotten.
When I was diagnosed in the 1980s, parents of type 1 children heard a grim prognosis for their little ones. Diabetes inevitably caused grueling complications, the doctors and popular literature said. Projected lifespans were cruelly short. It seemed that the best you could hope for was a constrained life shadowed by men in white coats, while a disease just waiting to strike lurked inside you.
This was, remember, before the official release of data from the the Diabetes Control and Complications Trial conducted from 1983 to 1993. Many of the principles behind that study were known at the time, but general practitioners were slow to catch up.
My mother and I were lucky to live in a university town with a teaching hospital, so I was started on a tight control regimen when it was still considered experimental. We learned to check my blood sugar multiple times a day and inject several doses of insulin. We learned to count calories and regulate meal times.
But that would unfold in years to come. At the time of my diagnosis, there were still books to read, booklets to page through, pamphlets to unfold. My mom did it all, sitting in the chair beside my hospital bed. I looked at the books for kids (some starred a cartoon pancreas), but most of it went over my head.
For me, diabetes was simple. I felt bad before I went into the hospital. Once I started on insulin, I felt better. Problem solved, right? Otherwise, I spent time watching the TV in the hospital room and riding the elevator from floor to floor, saying hi to doctors and patients.
I can only imagine my mom’s reactions. Later, she would hint at how difficult the diagnosis had been, how afraid it had made her feel. Those of you who are parents doubtless understand. But she didn’t want to make me feel guilty, and we never dwelled on the topic.
So what does a caregiver do? What did my mom do for me? Everything — and eventually nothing. That’s the way it should be, at least for youngsters with diabetes.
For the first few years, my disease was totally my mother’s responsibility. She checked my blood sugar. She gave me my shots. She shopped for appropriate food and made balanced meals, not just for me but for the entire family. In other words, she was it.
During middle school, though, she pulled back. I started giving myself my own shots and packing my own lunches. I checked my own blood sugars and kept my own records. Thinking back, it must have troubled her to give up some of that control, especially when it was her first-born son’s health on the line.
I resented it, frankly. Why was my mom, the person who was supposed to take care of me, giving me ownership of this daunting disease? The answer, of course, was that the best way she could help me in the long term was by giving me control of my treatment. It stung a little, and I certainly wasn’t perfect. But my mom knew I needed a chance to not be perfect, to grapple with diabetes on my own terms.
As I went through high school and headed off to college, I grew more comfortable with managing my diet, shots, and schedule. There was no single moment where everything became clear. Instead, over time, enough doctors’ visits and lab results piled up in my brain to give me a decent sketch of what I faced.
In the years after I left college, my relationship with my mother and disease changed. I moved on to high-tech therapy like insulin pumps and continuous glucose monitors. And my mother began to deal with her own autoimmune disorder — rheumatoid arthritis. It turns out that the diseases are closely linked. People who have type 1 diabetes without a family history of the disease often have a family member with rheumatoid arthritis.
As I watched my father gradually take on more responsibility for looking after my mother as she lost mobility, it gave me a newfound appreciation for caregivers. It struck me that caregiving can occur at all stages in life, for a multitude of reasons.
As time passed, my mother and I began to speak about our diseases as peers, not as mother and son. She would chat about her doctors and their recommendations. I would chat about mine. We would grouch about the healthcare system in the way that only two people with chronic disease can. And we would support each other. As difficult as my disease is, hers seemed more painful and distressing.
In the last couple of years, I became a caregiver too, not in the hands-on sense, but in the simple sharing of joys and sorrows with someone I loved.
My mom died in late June. I don’t mean to write an all-encompassing remembrance or medical history here. That’s for another time and another place, when I’ve had more time to both mourn and celebrate.
But when I consider my life with diabetes today and the writing that I do to inform others about the disease, my mother’s contributions loom large. If I’ve succeeded so far, it’s largely because of the example she set for me in those first 10 years. And where I’ve fallen short, it’s because I’ve forgotten about or ignored that example.
In celebrating caregivers, I’m doing just what my mother did for all those years when she praised my father, her doctors and physical therapists, and anyone who gave her a hand. She knew how important that act of celebration was — and is.