Dos and Don'ts of Being an IBD Caregiver

Patient Expert

Dear Caregiver,

You’re great. No, really, you’re so great for taking care of your loved one when they need you the most. Maybe you’re an experienced caregiver and maybe this is your first time. Either way, there are a few things that your patient might want you to know, but is too afraid to vocalize. Please remember how valued you are and the gratitude we, as patients, have for you. Everything you do does not go unnoticed, even though it may feel that way. Surgery is tough to recover from, and while we’re busy recovering and probably being a little selfish, you’re busy being selfless. And that, my friend, is a gift that can never be repaid.

In order to help you and your loved one get through this recovery as smoothly as possible, I’ve jotted down a few "do's" and "don’ts" that may make this process a lot easier.

Seriously though, you’re awesome.

Do:* ** Plan on checking in every day** one way or another. I didn’t always want in-person visitors in the hospital or at my home, but I still liked it when people called me or sent me a text.

  • Give them space. I know I just said to check in every day, but that doesn’t mean come and sit in the hospital room all day, every day, until the patient is discharged. Sometimes patients just want to be alone to reflect and rest—but there isn’t really a polite way to say that to people who are just trying to help. Know when you are overstaying your welcome.
  • Send flowers, bring small gifts or pictures. The hospital is a lonely, sterile place with white walls and sheets. Flowers are a bit of a generic gift, but they really help bring some color into a room. Small gifts that are funny or meaningful are always nice to help that person remember that people are thinking of them. Any kind of picture is a nice reminder of what life is like outside of the hospital walls.
  • Take notes about what the doctor says when he/she visits your loved one. Chances are the patient won’t remember what the doctor said, but that doesn’t mean they don’t want to know.
  • Handle all of the administrative things. Make sure all of the prescriptions are filled and the follow-up appointments are scheduled so it is one less thing your loved one has to worry about post-op.

Don’t:* ** Come to the hospital expecting to be entertained.** Your loved one is probably high on pain meds and will likely find it difficult to stay awake and have riveting conversations with you. If you’re going to visit, bring a book or plan to watch TV. While I know this isn’t very much fun for you, it does mean a lot just knowing someone is there with you.

  • Get an attitude with the hospital staff unless it’s absolutely needed. I’m sure it’s very hard watching a nurse miss on an IV poke multiple times when it’s your daughter’s arm she’s using as a pin cushion. However, in my experience, it made the mood in the room unnecessarily tense and, as the patient, if I’m not mad, you shouldn’t be either.
  • Take it personally when your loved one lashes out on you. Having major surgery is really taxing on the body AND mind. Add in high doses of pain meds and sometimes the person laying in the hospital bed is acting nothing like the person you know. I often said hurtful things, or yelled at my parents when I was in recovery. I did not mean what I said and most times didn’t even remember saying it.
  • Get too frustrated. Sometimes you might feel like nurse, maid, parent and servant. Don’t be afraid to take breaks, take a nap or even a night out. Being a caregiver can be physically and emotionally taxing as well. Be good to yourself.