Celebrating Caregivers

Mothers are often our most important caregivers after a diagnosis of diabetes.

| Oct 6, 2011

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.

The Context

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.

Taking Care

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.

Recent Years

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.

Wrapping Up

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.

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Categories: Autoimmune Disorder, Caregivers, Death, Diabetes, Diabetes, Diabetes Control and Complications Trial, Food, Mothers of Diabetics, Type 1 Issues, Type 2 Issues

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Posted by Anonymous on 6 October 2011

That's a very sweet story. You are very lucky. I was diagnosed Type 1 at age 14. My parents stepped back and a week later, I was holding all of the responsibility on my shoulders. I did all the research on my own and to this day, my parents hardly know anything about my disease. My husband has done his share of research and knows a significant amount- enough that I trust him with my life- but I didnt meet him until 13 years after my diagnosis. I talk about my disease and am very open about it, but very few seem willing to even try to understand. I'm not sure if that's a compliment or an insult. Do they want to look past my disease to just see "me" or are they saying it's not worth the time and effort for them to learn the things I have to go through to survive?

Posted by amysmercer on 13 October 2011

Clay, that's really beautiful! I was diagnosed at 14 years old and it wasn't until I became a mom ten years ago that I began to appreciate all the diabetes related care taking my mom has done over the years. I'm sorry you lost your mom, and thank you for reminding me to tell my own mom how much her support has meant to me over the years.

Posted by Anonymous on 13 October 2011

when i read this it is almost like my own life, my mom and dad were there with me growing up with this disease also they never showed their fear i was diagnosed in 1974 and that was when they really were just learning about this disease so yes the drs told us that i wouldn't be able to have children ( i have two daughters, 8yrs and 4yrs)and that i wouldn't live to see my old age and they didn't have much stuff for us to eat like the goodies they have today omg do the kids now have it great. tab was my favorite soda.because that was the only one they had.lol and my mom and dad would make special cakes that were like a big pancake but i was always happy to eat it, and the ice cream that my dad and mom made was as hard as a rock but it was special for me so i could eat ice cream. my dad died in april 2010 suddenly dropped dead of apparent heart attack, and i don't have any regrets he was always there for me and stood behind me thick and thin through everything including my low bs unawareness and the birth of my girls. but my mom and dad were a team that handled my disease like they knew what they were doing at the time i was diagnosed there was no diabetes centers to help you learn about shots and urine testing the dr gave my parents an orange and told them to practice on it and then give me shots every day of my life..but they helped me be the person i am today and i hope to be able to live to my ripe old years. but thank you for sharing this wonderful story of your mom.

Posted by Anonymous on 13 October 2011

Thank you from a mom of a wonderful 14 year old son who has had diabetes since he was 7. Although,I still get up every night to check him...and I am so tired, emotionally and physically,I see him learning and taking on more responsibilty all the time. More importantly, he is confident, happy, outgoing and athletic. The letting go is the hardest party of parenting.

Posted by Trekker on 13 October 2011

A wonderful tribute to your Mom. She did an excellent job as your caregiver and knowing when to turn it over to you. May her early guidance be with you and keep you in good control throughout your lifetime.

A fellow Type 1

Posted by Anonymous on 17 October 2011

What a wonderful article. I was diagnosed with type 1 17 years ago and I must admit that my husband's emotional needs have often been overlooked as I've grappled with recurrent low blood glucose. But he's the person who has brought me back from oblivion countless times and had to deal with the emotional distress of rescuing me. Thanks for writing this piece and giving me a LOT to think about.

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