I’ve never been hospitalized for more than a day, but I have spent a fair amount of time visiting others. Even though it’s sometimes hard to show up, I always make an effort. The last thing I want is for my people to feel abandoned when they are coping with a life-changing diagnosis, major injuries, or exhausting treatments.
I was 16 the first time I made a hospital visit on my own. I went to see a friend I’d known since birth. He had been transported to our local hospital after months of receiving cancer treatments at a larger facility. I remember feeling anxious. I wondered whether he’d still be the same person I had known. I feared he would be zonked out on drugs. I didn’t want to witness his suffering. I also felt guilty — I’d been living my life the whole time he was fighting for his.
I asked my mom how I should act during the visit. She told me to act normal. He was still my friend even though he’d been through the wringer. I prepared to “be normal” — which is a total catch-22 — but I brought a board game in case it was awkward. It wasn’t. He was tired from chemo, but seeing that he was on the mend was a relief.
There is no manual to prepare you to see a loved one in the hospital. But practice makes perfect. I’ve made many hospital visits since that first one. And after spending three months in the ICU with my mom, and another month after her double-lung transplant, I consider myself an expert hospital visitor.
This isn’t a manual, but I hope that it helps you learn ways to support someone in the hospital. Some are my ideas, and others I sourced from the amazing community of rare-disease columnists at BioNews Services, the parent company of Pulmonary Fibrosis News.
First, make sure the patient wants visitors. If they can communicate, call or text them to ask. If they aren’t able to talk — like my mom when she had a tracheostomy — get in touch with a family member or caregiver who is there. Or call the nurses’ station on the floor and have a nurse ask if they’d like a visitor.
Similarly, learn to recognize when it’s time to leave. Just because you want to visit for five hours doesn’t mean that is best for your person. If they do want you around for longer, be respectful of their privacy when medical staff come in the room. Medical talk can be embarrassing, so use those moments to go the restroom or to grab a cup of coffee.
As my mom said all those years ago, try to act normal. If you have a dramatic emotional response, your person may feel burdened by your feelings. Don’t say things like, “You look like 40 miles of bad road!” Even those with a good sense of humor probably won’t find that funny when they feel like the bottom of a pothole.
If all the person can do is nap and watch TV, be OK with watching TV. Don’t pressure them to engage in an activity or talk to you if they are too tired or sick. If you have access to a tablet or laptop, you could bring it or let them borrow it to watch movies online.
Offer to read aloud articles, stories, or chapters from a good book. You could bring a magazine and repurpose the pictures into wallpaper. That brings me to my next tip: Decorate!
Hospital rooms are ugly and impersonal. Posters, paintings, and other art that can be taped to the wall are good. Even better, make something yourself! I hung up pages from a coloring book in my mom’s ICU room, as well as a garland of paper stars. My aunt’s sister-in-law, Katie, sent small paintings that she did almost every day for four months. It gave us something to look forward to as well as brightening the drab space.
You don’t have to be present to be supportive. Send mail! Send cards with bright pictures and well wishes. Telling patients about your life can distract them from their own. Make sure to ask them how they have been coping and if there is anything they’d like to talk about. Ask about other ways you can support them.
Most importantly: Be there. Let them know that you care, even if you can’t actually be there.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.