Obviously there’s nothing funny about an FTD diagnosis—even for someone who makes their living finding the humor in everyday life. But Kelsey Cook, a nationally touring comedian known for her specials on Hulu and YouTube, has a unique perspective as a long-distance caregiver for her mother, who was diagnosed with FTD in 2020. Cook recently shared her FTD caregiving journey with the podcast Navigating the World with Your Aging Loved One, hosted by Nicole Will.

The decision to go public with her mom’s diagnosis was borne of her fear of isolation, she said. “The more I opened up about her both online and on stage, so many other people have a family member with dementia [who] would reach out to me and be like, oh my God, thank you for talking about this.” Cook said that her fans’ reaction spurred her to go beyond sharing her experience, but to be a resource—to learn and share more about FTD and dementia.

Cook recalled that early on, even understanding her mother’s behavior as symptomatic of a health problem was difficult, as it coincided with her mother’s retirement as well as her move from Washington state to Southern California, to be closer to Cook and Cook’s brother. “My mom had been a teacher for like 40 years. And [there were] just such massive life changes all at once for her,” she recalled.

Growing Uncertainty
Their uncertainty about the source of her mother’s “not being herself” soon grew. “We started to see some things changing with her in ways that we hadn’t before. We were noticing paranoia, some anxious things—was it really exacerbated by this big change from retirement?” The question was resolved for good the day Cook got a call from an ambulance crew. “The medics said, ‘We’re in a parking lot with your mom. She called 911 because she thought she was being followed by the cartel. And now she won’t get into our ambulance because she doesn’t believe that we are who we say we are.’” Her mother’s doctors could find nothing physically wrong.

The symptoms seemed to worsen when her mother moved back to Washington, and then with the isolation of the COVID pandemic in 2020. Soon a health crisis—a perforated ulcer along with COVID—landed her mother in the hospital, where her symptoms progressed rapidly. “She was in a room where the nurses come in wearing full hazmat suits, basically. I mean, she thought she had time traveled,” said Cook.

Her mother was in the hospital five months, at one point becoming catatonic—allowing doctors to perform a full MRI, from which they were able to diagnose FTD. They gave her six weeks to live.

The Bitter with the Sweet
“She pulled through it and is still here with us,” said Cook. But the long search for a diagnosis had taken its toll on her daughter. “I’m so sad that, a lot of the months leading up to my mom getting diagnosed were spent with me feeling frustrated with her. My mom and I’ve been so close our whole lives.” Most days, she said, “were still full of love, all the things. But I did find myself feeling frustrated with her a lot more in those months than ever before. And I’m sad that those are the memories I have with her, before she started to really slip away into this other person that is not my mom I’ve had my whole life. And it’s such a frustrating disease in that way.”

Cook has learned a lot about self-care in her and her mother’s journey, but her full-time job gave her another kind of outlet. “Comedians’ brains are weird,” she said, “because I can go from sobbing hysterically one moment, and then an hour later trying to find, is there a way to make my boyfriend laugh about this? I think some of these things are so dark that if you don’t look for any moment of humor, it can swallow you whole. I have really benefited from finding ways to laugh about all this. And it’s never at her expense. This is just such a wild situation. And I think [finding the humor] helps other people too.”

You can reach out to Cook at the email for her own podcast, Pretend Problems, which is pretendproblemspodcast@gmail.com.