Ten Things I Learned to Do—And Not Do—When Facing a Terminal Illness

By Deirdre Fagan

When my husband Bob was diagnosed with amyotrophic lateral sclerosis, ALS, or Lou Gehrig’s disease, it wasn’t long before Bob and I learned what sorts of responses we did and didn’t want to experience with friends and loved ones. We didn’t want to hear, for example, that someday everything would be made better, despite that ALS is a terminal illness, and neither of us wanted people staring at us in pity. Neither of us could stand being told he was going somewhere better than with his wife and three- and eight-year-old daughter and son. What we did want was for people to treat us as they always had and also to not make us responsible for their emotions—we had enough to handle already. We wanted people to continue to visit us and spend time with us and help us make lasting memories. After all, they were going to have to last all of us the rest of our lives, though my life and the kids’ lives and memories were going to be notably longer than Bob’s. Mostly, we wanted people to show up. We wanted people to give us their time. 

Often, when people are sick, we run from our emotions and even run from them. When I was twenty-three and my mother was dying of cancer, I spent the summer with her, but about once a week, I would disappear for a day or two. I had so many emotions and running away seemed to help. I’ve been there and I’ve done that. I’m not without this instinct. But while Bob was sick, I learned some things about what to do and what not to do when someone tells you they are dying, and I share them now in the hope that they help you decide how best you can support the people you love during this incredibly difficult time.

Ten things not to do when someone is dying:

  • Tell them it’s going to be okay.
  • Look at them with a sorrowful and pained expression.
  • Tell them that they aren’t dying and surely there is a cure for whatever they have.
  • Say you have no idea how they are able to handle it.
  • Say you can’t hear about their illness or concerns because it’s too much for you.
  • Stop calling them or stopping by because you are uncomfortable.
  • Tell them maybe it’s the best thing in the end.
  • Give them religious materials supporting your own belief system.
  • Ask them to make peace with a higher power so they can be saved.
  • Explain that they are going to a better place.

Ten things you can do when someone is dying:

  • Offer them physical affection like a hug or holding their hand.
  • Listen to whatever they want to talk about.
  • Let them guide the conversation about their illness.
  • Stay present when you are with them instead of avoiding.
  • Accept the reality of their illness with them rather than glossing over what they say.
  • Do something physical that helps to ease a burden.
  • Organize care or support visits, help, or gifts from others.
  • Let them call the shots on their care and other choices.
  • Show up.
  • Keep showing up.

Deirdre Fagan is an author and associate professor and coordinator of creative writing at Ferris State University. Her memoir, Find a Place for Me: Embracing Love and Life in the Face of Death, will be published on November 1, 2022. For more information visit www.deirdrefagan.com.

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