I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Friday, February 4, 2011

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.


  1. Hi Tamara :)

    Ahhh...a chocoholic...A GIRL AFTER MY OWN HEART!

    Nice to "meet" you! My oldest daughter (7) was dx in 2005, at the age of 24 months. She wears a pink Ping! Oh what fun our girls would have if we could get them all together (I have 3, btw)!

    Anyway, she was dx with celiac in 2008 and I was dx with celiac as well in 2009.

    It's a sweet adventure full of gluten-free goodies!!! I hope you'll stop by sometime and I added you to my blogroll :)

    PS (I'm a RN...love me some doctors!)

  2. HI Tamara - I found you through Six Until Me this morning and just wanted to say 'hello"! My son Addison is 4 and was diagnosed with type 1 at 15 months old in 2008. I am looking forward to following you and your family on this crazy D journey...

  3. Hello! I just found you through your guest post on SUM. I was diagnosed with T1 at 8 years old (20 years ago!) so I remember what it was like from my perspective but reading your blog makes me think about what it must have been like for my mom. (My dad was also T1 and I later found out that for inheritance, father-daughter transmission is the most common. Figures, right?)

    Anyway, I wanted to say hi and let you know that if you ever have any questions about what Jessica is experiencing I'd be happy to chat! Everyone experiences these things differently but I will say that the best thing my mother did for me was encourage my independence. Everyone in the family knew about diabetes, supported me and looked out for me but no one managed it for me. I was also a kid who was scared of needles and had never broken a bone or needed stitches up until my diagnosis so it was a slow transition. But gradually I accepted more and more responsibility. A year after my diagnosis I went to diabetes camp and came back giving my own shots. From then on I was very independent.

    I just had my first child 7 weeks ago (a little girl!) and as much as I know about this disease, I can't imagine what it would be like to watch her live with it. I hope I never have to find out. If you ever need anything or want to vent, please let me know!


  4. Hello! Welcome to the DOC! I found you through SUM as well. I was diagnosed just before my 7th birthday (22yrs ago last week!). I can't imagine what you are dealing with as a mother. I am actually going through with my childhood dream of going into medicine. I just finished my first round of applications to PA school. I think that having/dealing with diabetes makes you much more rounded as a practitioner. I would be interested in hearing how it has changed your perspective.


  5. Well written! I've added you to my list of blogs to check daily!


  6. Emily - Hey! Just wanted to let you know I'm also in medicine. I'm a nurse practitioner and I definitely agree that having and managing diabetes changes your outlook on medicine and patient care. For me, I think it makes me more patient and empathetic. And I REALLY think twice before using the word "noncompliant" because it seems like it was used by bad Endos (and accompanying a sneer) to describe "bad diabetics." I've just always felt like no matter how much you know about the disease, if you aren't walking in a patient's shoes you don't know their experience.

    Good luck with PA school, you'll do great! (And you may even teach them a thing or two about T1!)

    (Sorry to hijack your comment thread, Tamara! I'd also like to hear your perspective, and even your husband's, as doctors living with diabetes.)

  7. Hi-
    I found your blog through Six Until Me. My husband has Type I and I have two young daughters six and three. I Love reading your blog and would love to get some recipe you use for your kids/husband. I can never find really good diabetic cookbooks so was wondering if you had any good ones that both your kids and husband like.

    Mary (merrills02@yahoo.com)

  8. Hi! Here through SUM. I am definitely interested in your experiences. DH was diagnosed at 18 as well, and though we don't have kids yet, I fully expect diabetes to be a part of their lives also. Reading about your experiences brought tears to my eyes. Thank you for sharing.

  9. Thanks so much for all the support! And, I will definitely post some blogs on how it has changed me as a family doc (it has!) and some recipes...although I'd gladly hire a chef if I ever win the lottery! Cooking before diabetes..a pain...cooking after is a full time job! So glad to "meet" all of you wonderful people!