The Constant Spiral of Caretaker Guilt
One feeling I was not prepared for when I became a CF caregiver was guilt. Few things can send me spiraling quicker than a perceived sense of guilt for something affecting her health, even when I know I am not responsible for the symptoms cystic fibrosis brings on.
As I write this, I am boiling a pot of my daughter’s bath toys to disinfect them. Here’s a glimpse at some of the thoughts I’ve had as I do this:
“I need to do this more often.”
“Why did I leave this so long? There are so many.”
“If I did this more often, it wouldn’t take so long AND they would be safer. “
“I need a better system.”
“She cultured something because of these toys.”
The ongoing guilt I feel as a mom
Guilt pops up even when I’m doing everything right. When I cook meals, my daughter often asks for a quick sample of whatever I’m making before dinner. I often feel so guilty when I have to give her a pill just to eat that bite. On the flip side, if I do give her that bite without pills, I feel even worse when she complains of stomach pain.
A fellow CF mom described it best when she said to me that that’s one of the worst parts of CF — You do so much but it still happens. Coughs. Culturing bacteria. Weight loss.
Guilt, shame, and anxiety on repeat
When Margo was a baby, I would feel guilty having to wake her up to eat because she needed to eat every 2-3 hours around the clock for months. The first time we both slept eight hours straight was because I snoozed through my alarm.
I felt pure joy at the amount of sleep we both got, but that joy was quickly replaced by crushing guilt. Will she lose weight because of this? How were those hours of uninterrupted sleep going to translate on the scale?
I hated doing manual CPT at first because she was so tiny and it felt like I was hurting her. When she turned three, she got her first vest and I was so excited for the independence it would give her, and frankly, for the break it would give me and my husband.
However, that excitement gave way to guilt because it was obvious she didn’t like it and preferred manual. Did I push this on her? Am I selfish for wanting the vest over manual PT? She doesn’t get a break from CPT-- Why should I get one?
Worried about our kids' relationship
More recently, guilt has come up in response to our new family dynamic. In January 2021, we welcomed our new baby girl. My husband had already taken on many caregiver duties when I was pregnant, and once she arrived, his responsibility increased. He and Margo did PT together, often while I held or fed the baby. I’ve had to miss Margo’s last two clinic appointments because I didn’t want to unnecessarily expose a newborn to germs.
On top of the guilt, there have been so many feelings that go along with this. Sadness that I’m not more involved. Frustration that in my postpartum recovery, I wasn’t physically or emotionally able to be the caregiver or even mom to Margo that I wanted to be.
On top of all of this, my new baby does not have CF, which we are extremely grateful for. But how will I explain this to Margo and to the baby when they are older? Between the two of them, how do I handle any feelings of resentment that Margo might have because her sister is healthy, or vice versa because of the attention Margo gets for her CF?
We just want the best for Margo
I know worrying is fruitless and I try to step back and reflect on how much my husband and I do to protect and take care of Margo’s CF. We do everything within our power to protect her without keeping her in a bubble, to educate her without scaring her, and to advocate for her while teaching her to advocate for others who also need help.
Just like any parent would do for their child, CF or not. I’m just doing what’s best for my kid.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?