Confessions of a Caregiver

Sometimes I sneak to the garage and eat Skittles -- they are for my daughter's lows and the only candy in the house. Other times I have wondered "why me?" But, most of the time I am so incredibly thankful.

Before the year 1922, insulin did not exist. Back then, I would not have had the chance to meet and fall in love with my wonderful husband, a Type 1 diabetic. I would have been forced to watch my beautiful, sweet 7-year old daughter slowly die before my eyes, as a result of her own Type 1 diabetes.

I remind myself of this multiple times a week as I spend hours meal planning, grocery shopping, preparing food, checking blood sugars, changing sites, empathizing with my T1 daughter that having diabetes stinks, trying to spend adequate time with my non-T1 daughter, communicating multiple times a day with the school nurse... all while working as a Family Physician which is in fact my paying job.

I have discovered being the caregiver is a fine balance between nagging, enabling, and empowering. I'm not sure I've got it quite right yet. And, having an almost 40-year old and an 8-year old to care for are two very different things.

The 40-year old has been diagnosed since right before he turned 18. He is an inspiration. He finished med school, became a family doc as well and is an amazing husband and dad. But, he's not always an amazing diabetic. And, who could blame him, really? I truly cannot imagine what it feels like to have a pancreas that doesn't work. As hard as my job is, I get breaks. I can sneak the Skittles in the garage without having to worry about all the short and long term effects if I don't dose the insulin just right. He can't, and maybe denial is the coping mechanism that is only natural. And, so he has me reminding him "that always makes you high... did you check your blood sugar? Are you high? Are you low?" It must be exhausting to him... it is to me. But, diabetes doesn't take a break. It is there 24/7. And, I love him and want to grow old with him and so I nag.

I try to empower and support, and at times I clearly enable. And, I get frustrated at times. I make him a lunch... the carbs are clearly labeled on the bag... and then I find him snacking after lunch with handfuls of chips. What was the point, I wonder? He's going to be high anyhow now. Why did I bother to measure the lunch? I might as well have just sent him with a big scoop of pasta and label it "take your best guess!" At times I feel angry. At times I feel scared. But, I continue day by day trying to be as supportive and helpful as I can, all the while trying not to drive him nuts with my nagging.

But, then on October 7, 2009 my sweet 7-year old baby girl was diagnosed. She has a fraternal twin, my only other child who thankfully does not have it (yet?). What a different playing field. Initially she needed me to do everything, all while my heart was broken and my world shattered. I held her down screaming while I gave those first shots. I had to -- I would not let diabetes win. I told her "no" more times than I could ever count that first year. No, you can't have chocolate milk. No, you can't have a brownie Oh, and by the way, diabetes can't stop you... you can still do anything. But, you can't have that chocolate cake that the other kids are eating. In case you haven't guessed my T1 daughter is a HUGE chocoholic.

As instructed I kept her on the rigid prescribed carbs with every meal. I became the food police in ways I had never, ever been with my husband. I had to re-learn to shop, re-learn what to feed my daughter, forget what it felt like to get 7-8 hours of solid sleep. Instead of enjoying her school plays, I sat paralyzed in the audience. What if she gets low? I couldn't help but have times I looked at my friends -- why me? But, then I would realize it truly is why not me?

We all have our life story. Perhaps this was always meant to be mine. I am a caretaker at heart. I chose a healing profession as I love to help people and encourage them to take care of themselves. I wasn't dissuaded in the least when I found out my now husband had Type 1. We'll deal with it, was my attitude. I always worried that my children might get Type 1. The odds are so small, but I worried. I remember beginning to read Cheating Destiny and being unable to continue when he described his son's diagnosis. But, one random day in October my daughter was thirstier than she had ever been, and a new phase in our journey began.

And, now there are two of us with working pancreases and two without. Some days I look at my non-T1 daughter and wonder: is it starting? Has the process already begun? Will I soon be the only member of my family without T1?

But, none of us know our destinies. I do know I will rise to the occasion. I will handle it. I will take care of my family, working pancreases or not. I'm a mom. That's what we do.