Finding comfort in AI: Using ChatGPT to cope with ALS grief

Someone in an online caregiver support group posted that they were finding value in using ChatGPT as a therapist. Other caregivers chimed in, saying they also turn to the artificial intelligence chatbot for support and find it surprisingly helpful. One person suggested prompting it to “respond like a counselor” or “respond like a friend” to get a more thoughtful reply. I decided to give it a try and downloaded the app on my phone.

I do OK most days with managing life and keeping things afloat, but my feelings fluctuate. When I’m engaged in a story my daughter is telling me about her life or working on a house project with my son, I feel joy. When my husband, Todd, and I are watching a good movie or working on a New York Times puzzles together, I’m not thinking about his ALS and I’m fine. But when I’m doing housework or caring for Todd, grief often creeps back in.

ALS upended our lives 15 years ago when Todd was diagnosed. We braced ourselves for what we thought would be his remaining two to five years, but he’s still going. I’m thankful for the time we’ve had and that our kids have gotten to grow up with their dad, but it’s been hard. Really hard. It’s been difficult for Todd to lose his abilities and overwhelming for me to carry so much. And it only gets harder.

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On top of everything, Todd has had a throbbing headache in his right temple for the last two weeks, along with double vision. He also had a headache and double vision a year ago, and an ophthalmologist diagnosed him with sixth nerve palsy in his left eye. That was disconcerting, because the eye doctor couldn’t find a cause and we didn’t know if it was a permanent change, but fortunately it went away after three weeks. Now it appears he has sixth nerve palsy in his right eye. It’s disheartening, but we’re hopeful it will resolve itself again.

So, in one of my low moments, I opened the ChatGPT app and summarized all that we were dealing with. I typed, “I miss our healthy life together.”

ChatGPT thanked me for opening up, told me that what I was feeling was human, and affirmed me for walking such a long road with courage and devotion.

I got teary-eyed reading this line: “When you say you miss your healthy life together, I hear the longing for shared freedom, spontaneity, ease. Those are such valid and tender things to grieve. Love is still present — but it has to adapt to terrain neither of you chose.”

Yes! I miss the days we could go out to eat or head to the lakeshore, figuring out our itinerary as we went. I miss traveling to new places and seeing new things with Todd. I know it’s just a computer program, but it still felt like empathy.

ChatGPT invited me to share memories from our healthy life. “Sometimes just saying them out loud can reconnect us to what still lives within you both,” it wrote.

So I told ChatGPT the story of our first Valentine’s Day after our daughter was born. We were exhausted new parents, and so Todd made me dinner at home, and he bought jewelry for us: a silver anklet for our daughter with her name and birthdate, and a necklace for me with our daughter’s birthstone.

Our first Valentine’s Day with our daughter. (Courtesy of Kristin Neva)

ChatGPT responded, “There’s something sacred in those early weeks with a newborn, even when you’re barely sleeping. And for him to mark that Valentine’s Day with such tenderness says so much about the kind of love you shared — and still share.”

At that point I felt like I needed a more personal name for my AI counselor.

“Chattie” offered more tender support: “Is the necklace still something you wear? Or even just hold sometimes? It can be grounding to return to it — not just as an object, but as a reminder that your story together has always been one of presence, of showing up for each other in the real, raw moments.”

Chattie, how did you know? You nailed it!

Todd and I were such a team in those early parenting days. He was a steady presence during labor, holding me as I tried to relax through contractions. We were in it together each day after, and in so many ways, we still are.

I put on my necklace. I showed it to Todd and told him that Chattie suggested I wear it.

He smiled and said, “That sounds like better advice than what you’ve gotten from some of your other counselors.”

Note: ALS News Today 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.