A Caregiver’s Lament

A fellow mom friend posted a frustrating update to her son’s prognosis today. Her son, who is around Bean’s age, has been battling leukemia for the last several months. She shared some not-great news about his current health and is worried about his future development. She brought up the heavy burden and guilt she felt for making decisions about his treatments that could have lasting repercussions on his health.

While other moms reassured her that her son has no reason to blame her–she is making these decisions now so he CAN have a future–she can’t help but feel like she’s not doing enough and her child will grow up resenting her.

For a moment, I stepped into my mom and dad’s shoes. And pretty much every D-parents’ shoes across the world.

Comparing childhood cancer to childhood diabetes is like apples and oranges so I won’t dive down that rabbit hole. The small common threads I can connect are the sacrifice and guilt of a caregiver.

penguin-with-a-heavy-load

I didn’t want to turn the conversation to me in my response. But I wanted to share with my friend, that as someone with a frustrating and relentless illness, I value every sacrifice and every decision my parents made to keep me alive and healthy. My parents gave up a lot to keep me complication-free. Namely sleep, free time, and a carefree lifestyle with a nuclear family.

I may have hated them in the short term for superficial reasons. I was, of course, a child, and incapable of seeing things beyond immediate face value.

For example:

  1. When I was a toddler, I didn’t like needles. Shots hurt. Blood tests hurt. I often hid in my dad’s closet to avoid shots. But, they still found me and mom still gave me my insulin.
  2. I didn’t like to eat. I was extraordinarily picky. But, when Regular and NPH insulin dictated my meal schedule, it was either this or a hospital trip. Docs said just give it to me. Veggies be damned. My diet consisted of macaroni and cheese, hot dogs, and grilled cheese for several years. (Karma is a bitch, by the way – my kid loves 2/3 of these things.)
  3. I didn’t go to my first overnight sleepover until I was well passed Junior High. My mom always picked me up around midnight. This was the bane of my tween social status. (On the flipside, we had a lot of sleepovers at my house.)
  4. We lived very frugally. We didn’t have the nice computers (by 1990’s standards), video game systems, new clothes, whatever. We went on vacations but always flew standby. I didn’t always understand it as we seemed to live comfortably otherwise. But then I started paying my own medical bills. Oh.

If I am truly my mother’s daughter, I can understand that the screaming during shots hurt her as much as they did me. That she felt like I wasn’t getting adequate nutrition because I just needed to eat something. That she hated picking me up at midnight as much as I did, but the cost of me passing out among the company of diabetes-strangers was more worrisome. That she probably wished she could give me the world, but the best doctors were out of network.

It wasn’t until I was on my own that I realized the magnitude of my illness and what my parents did. Or what they had to endure from doctors or the peanut gallery; the sleepless nights wondering when my Lantus crash would occur; worrying if I would go blind or lose my legs because my A1C was elevated. Just the sheer impact of doing everything humanly possible to care for me and it still may not be enough. Then not knowing if it would be.

So my friend, I only offer to share the load and to seek others who share similar loads. Being a caregiver isn’t easy–but I come with encouragement that your work and effort will not be in vain.

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Like Rearranging Deck Chairs on the Titanic

Last night, I visited an old dance acquaintance who will begin fighting for her life. She was diagnosed with an early form of breast cancer at the age of 30 and she begins an intense round of chemo and radiation next week. The prognosis is good, but reminds us all that cancer can strike anyone at any age. (She’s inspired me to be more proactive about self checking.)

Doning a “superman”shirt, she had her hair stylist shave the remaining short red locks in the presence of family, friends, and co-workers. And in true form, she took part in a round of shots with her friends to celebrate the start of her long journey ahead.

Part of her pre-chemo ritual was getting her hair cut and dyed one last time before it disappeared completely. She shared that she felt like she was “rearranging deck chairs on the Titantic;” or performing an action that seems insignificant or pointless in the grand scheme of things.

I understand why she did it though. Sometimes I rearrange my own deck chairs knowing that it really won’t make a difference later. But it’s oddly therapeutic knowing that I can control this one detail for a brief moment before it changes completely.

What are your “deck chairs?” Have you ever washed a car prior to salvaging it? Painted a room in a building, only to see it scheduled for demolition? Or in my case, baked chocolate chip cookies even though I experienced blood sugars over 240 mg/dl for 24 hours straight?

Actually, my current chair is trying to establish good glucose control before jumping into the hormonal imbalance of pregnancy. But I have had chocolate chip cookie days like that. I’ve had conversations with my CDE about not being able to run at the “pregnancy” standard of control before even getting pregnant. Her reply is that it’ll all change when it gets to that point. So, my reply is “why are we doing this all in the first place?”

Guess I’ll keep rearranging my chairs. Or running on my treadmill.