Caregiver Guide
This section will cover the real-world caregiver experience during CAR-T therapy, including exhaustion, fear, hospital life, questions to ask, and practical ways to stay organized.
Caregiver Tip
At the very beginning of our journey, once I realized we were going to be going to a lot of appointments, I bought a comfortable JanSport backpack and made it our dedicated CAR-T bag. I’m not here to sell a backpack, but I remembered having my JanSport backpack all four years of high school, so I went with what I knew was comfortable, simple, and able to handle being thrown around throughout the journey.
Don’t worry about getting a huge backpack for your daily go-bag. This is not meant to hold all of your clothes or overnight hospital items. You want your appointment bag to be small, lightweight, and easy to carry, because it may be on your shoulders or with you for hours throughout the day. For overnight stays, I recommend keeping a separate bag. I personally used a large military-style cargo backpack during our week-long hospital stays, but any overnight bag or luggage will work. The main point is not to combine your daily go-bag items with your overnight-stay items.
I also bought a 1-inch flexible binder and organized all of our important paperwork in one place. That binder helped us keep track of emergency phone numbers, appointment information, FMLA documents, disability paperwork, hospital forms, notes, and anything else we might need during an appointment.
Backpack similar to the one we used →
Binder
Binder similar to the one we used →
Overnight Bag
Overnight / multi-day hospital bag →
You do not need this exact overnight bag. For longer hospital stays, use whatever luggage or travel bag you would normally pack for several nights at a hotel. The important thing is to keep your overnight clothes, toiletries, and longer-stay items separate from your daily appointment go-bag.
We brought that backpack with us every time we went to a doctor’s appointment or hospital visit literally everwhere. It became our “ALL” backpack — the one bag we knew had everything important inside.
I kept my laptop in there, along with hand sanitizer, extra pens, and other small essentials. Looking back, having one dedicated backpack was one of the simplest things we did, but it was also one of the most helpful. When everything feels overwhelming, having the important documents and supplies in one place can make a huge difference.