Becoming a Caregiver While Living With Crohn’s

I’ve filled this page and deleted it several times already. It's hard to while seeing a myriad of visual reminders of where I am. Mainly women walking by with scarves hiding bare heads. I take a deep breath and then another while trying to refocus on the laptop screen. This will be my mother’s reality for the next year, and while merely a passenger on her journey, it will be part of mine, too.

Mother's support with Crohn's

When I got sick beyond measure at age fifteen, my mother fought with a fierceness to figure out the source. In 2012 at the beginning of a debilitating Crohn’s flare, mom was there to take me to appointment after appointment and procedure. She drew the line at watching an IV start or being there for blood stuff, but she was there even if in the shadows. Even after I got married, mom helped with appointments, since her work schedule is more flexible than my husband’s.

And now the tables have turned. I’m in a form of Crohn’s remission and my mother is sick. It’s hard to quantify her right now as sick. According to all diagnostics, aside from the rare form of cancer growing inside her left breast, my mom is the epitome of health. Go figure.

But that will soon change when chemo treatments commence.

Caring for my mother while she's sick

As the person in our family who doesn’t work traditional 9-5 hours, a lot of responsibilities will fall on me. And that’s okay. I can handle it, right now. But, recently, more than a few people have said, “You need to take care of you, too,” and have asked if I have a backup plan?

It’s so true. I’m no good to anyone in this family if my health regresses. Currently, I’m formulating a plan to help mitigate days when I can’t do for myself let alone my parents.

Support I need while I support my mom

One thing that takes a ton of energy out of both me and my mom is walking the dogs in Florida’s eternal heat. So, a dog walker I can call at last minute’s notice will be helpful. Meal prepping is another thing I’m trying to do for both households, as well as purchasing easy-to-make meals from the market.

The days that mom will need to have all-day appointments, I’ll have to collect as many Z’s as possible. Rest is so important.

As a therapy greyhound pranced by, I was reminded of my location, a hospital cafe disguised as a Starbucks. Her name, Sonny, is neatly printed on her volunteer smock. A crowd immediately forms to give her pets and scratches. Sonny’s tongue dangles out the side of her mouth, she thumps her long tail happily. Just as quick as Sonny and her human arrive, they are off to their next destination. I instantly regret not asking to pet Sonny.

A friend is planning on teaching me port maintenance. Mom has no interest in looking at or touching hers. So, a little over six weeks ago, I removed the artificial overlay that makes it harder to pick and peel at nails. This also leaves me with urges to pick at my cuticles. Unfortunately, that leaves me at a higher risk for infection from over picking at the skin around my nails. I try to keep that in the front of my mind whenever the urge to pick comes on.

Working smarter, not harder

One other thing I plan on doing is making a list of 3-4 things that need to be done each day. Manageable items that benefit my household and my parent’s household. This includes an hour of some form of exercise or activity. I’m unsure if I will map them out as my house / their house, or one day at their house and one day at mine. It’ll be a learning curve for now.

Lastly, on my own treatment days, I’ll have to communicate with family members when extra help will be needed.

My particular Crohn’s journey has not been an easy or quick one, and mom’s cancer journey may very well echo that. For now, my goal is to work smarter not harder during the next few months of her chemo treatment.

How did you prepare to shift your role from Crohn’s patient to becoming a caregiver for a loved one? I would love to hear about your experience.