Family Finds Joy in Virtual Community

The Bell family didn’t mean to share their story with the world.

When Patti was diagnosed with early onset Alzheimer’s disease in 2019 they didn’t tell anyone. “We were still processing the news,” Patti’s husband Mark explains. “It wasn’t a big surprise, her mother had it too. But there was a lot going on. I’d just retired, we’d lost my mother and brother, and then came Covid. It seemed easier to keep it private.”

Mark became Patti’s primary caregiver, and by 2021 he was exhausted and angry. He turned to alcohol. “I thought I was taking care of Patti but I was self-medicating and she was along for the ride. Our daughter Molly saved us both.”

Molly smiles. “By the summer of 2022 it was clear he needed help. It was emotionally overwhelming. They barely left the house, and drinking became a coping mechanism. He went to detox, and I moved in. It was rough! Mom was always looking for Dad. My brother Patrick was in the Navy and he was able to come home to help – we changed the locks, put up cameras, and hired people to help out – our goal was to keep her safe and make things easier for Dad when he returned. I started taking videos to show family members what was happening. I didn’t know how to process what I was seeing.”

Mark was in detox for 70 days. “When I came back I was ready to hear what MMC had been telling us. I had to take care of myself to take care of Patti. Now we have paid caregivers a few days each week, which gives me time to decompress. I go to AA meetings, exercise, and I see friends. I learned the hard way that it’s self-destructive to try to do it all.”

A few months ago, Molly’s brother and his wife had a baby. “My kids are grown,” Molly explains, “so this is the first grandchild in a long time! I took a video for my son of Mom with the baby.” She had trouble sending it via text and resorted to TikTok. “I only had 12 followers – I figured nobody would see it.”

Molly was wrong. Within hours over 300,000 people had seen Patti meeting her grandson for the first time. The comments were overwhelmingly positive, largely from other caregivers offering support. Molly has continued to post videos, mostly of joyful and funny moments, along with her candid, personal observations and the account has millions of views.

Followers respond to the family’s love, respect and compassion. Molly explains, “Mom cared for her mother and disabled brother, and she was a teacher. She was a role model for me, and she deserves to be cared for the way she cared for others.” Mark adds, “I’ve learned to recognize what matters and what to just let go. I want to do the best I can for as long as we have her. Every day is a new normal – as soon as we get into a routine, something changes. We just roll with it and remember she’s still the person we’ve always loved.”

Molly nods. “TikTok has been therapeutic for me. I’ve posted videos from a time when I didn’t know what the future would hold. We’ve all come such a long way. Seeing the love for Mom online is healing for me and very special.”

Mark, Patti, Molly and Patrick in 2016
Patti meeting her grandson in 2023

A Note from Dr. Chaconas

This story demonstrates the importance of caregivers practicing self-care. By accepting help with caregiving duties, Molly and Mark can maintain their connection to Patti as her husband and daughter, and this makes them better caregivers. The TikTok account illustrates the love they all share.