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Guest Post: Confessions of a Caregiver.

I'm doing some traveling this week, and I'm really grateful to have some wonderful guest posts on tap for while I'm away.  Today, Tamara from T1 Family offers up her story.  Tamara is the wife of a person with type 1 diabetes, and also the mom of a CWD.  (And she's a family physician, to boot.)  I'm really proud to be introducing her to the Diabetes Online Community - please give her a warm welcome!
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Thank you, Tamara, for guest posting today.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.
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Tamara, I am only beginning to understand what being a mom means.  Thank you for such a moving post, and for taking such good care of our fellow PWDs.

Comments

Thank you for sharing your perspective. I understand your frustration when you try to help your husband and then he adds chips anyway… As a PWD, all I can say is that your effort IS appreciated; you made 1 of 1Million calculations/decisions that we face daily. Knowing that there is someone helping is a godsend and we couldn’t begin to adequately thank our caretakers for everything they do. ...but let me try... Thank you and Godspeed to your family.

You are an inspiration to all moms! Taking care of our families is our priority regardless of the obstacles we face.

Great post! Welcome to the DOC :)

Beautiful post Tamara! Big hugs to you and your husband and beautiful girls.
Sincerely,
Patti H.

I loved reading Tamara's post..thanks for introducing her!

Wow, what a great piece. Thanks for sharing!

Kerri and Tamara, thanks to both of you for this post. Inspiring. The chocolate issue made me think about Elizabeth Snouffer's essay about her "Tiger Mother" and the restrictions she imposed. Definitely an interesting issue...
http://asweetlife.org/a-sweet-life-staff/featured/tiger-mother-approach-for-a-child-with-type-1-diabetes/14254/

I can relate to your frustration with packing lunches with cards listed only to see your husband cheat later....but from the otherside.

My mother in-law used to get sugar free deserts for me to eat at family gatherings. More times than not I would have a bit of them and then also indulge in the non-diabetic friendly deserts too. Finally it got to a point she just stopped getting the sugar free options.

The real issue was she always would buy the either the same thing each time, or things I did not like. I hinted at my favorite choices...but she never caught on.

All you can do is try your best...as frustrating as it is at times. That is what love askes us to do. For me...it is trying not to eat the sugar filled deserts.

An amazing diabetic is not the same as perfect. There is no perfect there are amazing diabetic, some even encourage their spouse to regularly remind them of happily accept things and that may get other spouse in other relationships something approaching the "Dexter" treatment.

Amazing is an attitude, perfect is a pipe dream.

Thank you for sharing your story - it's very inspiring!!

This post touched me beyond belief. As a newlywed to a T1, I've continued to think about the day we decide to have children and the thought of passing this along to our offspring makes my stomach sink. It's nice to hear from someone who is doing it, and is cherishing life just the same!

Tamara, That was a beautiful post. I am the Mom of a 20 year old diagnosed at age 18. I know how you feel esp the fear part.It crippled me for a long time and finally came to the realization that life goes on and they will all be ok.Thank you

Thank you, Tamara! Moms of Type I's are awesome! I was diagnosed at age 16, and my brother just two months later. I will never forget hearing my mother sobbing when she found out that a second of her 3 children also had Type I.

Great post! Now where can I get "Take Your Best Guess!" post-its for school lunches?

Very touching. Let me tell you, you do waaaaay more for your daughter than my mother ever did for me! My mother cared, but she just didn't have the training or knowledge, so at 14 I pretty much fended for myself, d-wise. Your love for your family shines through and you have the skills to help them, too. How lucky they are!

Thank you for posting....brought tears to my eyes. Your family is so lucky to have you!

Tamara, you make a difference in this world, a HUGE difference! Everyone that you touch is blessed and a better person and I am grateful to be one of those people!

I am a Prediabetic, daughter of a Type 2 who later used insulin and can relate to the energy that goes into being a caregiver to a family member with diabeties. I coudn't help compare the words you used: nagging, enabling, empowering, and support in my own family situation with my son who struggles with addiction. And to Jules comment that "taking care of our families is our priority regardless of the obstacles we face." Though many would disagree as addiction still has so much stigma attached to it. You have helped me put words to how I feel as a mother and a care giver to my son. Family often walks a fine line in caring for our loved ones who struggle with chronic illness. Thank you for your honest, insightful post.

As the wife of a PWD and a soon-to-be mother, I think I just found a new blog to read. Thanks for the post!

Tamara,

Besides the fact that we share the same name, our sweet baby daughters were diagnosed 6 days apart from one another. My daughter was dx 5 days before her 7th birthday on 10/1/09. This day has changed all of our lives.

Like you, when things are trying I try to keep in mind what it would have been like prior to 1922.
Your words spoke to me.

Tamara, thank you for sharing your story. You're in a unique position as a professional caregiver, and a round-the-clock caregiver at home too. Thank you for all that you do!

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