When you are caring for a loved one with dementia, it is common to want to share your daily struggles with others. I have found that people are sympathetic, but it is difficult to convey the day-to-day experience.
For me, it isn’t the big challenges, but the fact that there are a thousand small ones each day that prove exhausting and difficult to communicate to someone who hasn’t experienced it. A dementia patient might take as much as an hour to get dressed and that may include several detours and steps of confusion. Often, I have wished that I could carry around a recording device so that I could show others what my wife faces and how challenging a small task can be.
Joey Daley decided to do exactly that. His mother Molly was dealing with Lewy Body Dementia and Joey began recording and sharing their visits. He created a Youtube channel and a Facebook group to spread the word and educate the public. The Molly’s Movement video series began in January 2017.
The most heartbreaking episode comes when they have a conversation and it becomes clear that Molly doesn’t know who her son is.
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The videos can be heartbreaking to watch. Molly struggles with simple tasks and is confused by simple questions. The most heartbreaking episode comes when they have a conversation and it becomes clear that Molly doesn’t know who her son is. This is when he finally breaks down, in the car afterward.
It isn’t all tragedy. You see them go about their lives as Joey picks up Molly from her assisted living center and takes her out to lunch or to visit family. There are lighthearted moments when she jokes, shadowboxes with her grandson, or enjoys a Frosty at Wendy’s.
Wendy’s corporate even got involved, inviting Joey and Molly to visit their offices.
The videos went viral and have been viewed more than 80 million times. Dozens of media outlets covered the story and the Facebook group eventually reached over 125,000 members, many of them caregivers or relatives of dementia patients.
Molly’s Movement has been a powerful tool for educating the public about dementia. By putting a face–and a compelling one at that–in front of our eyes, sharing her story, her pain, struggle, and humor, they have helped people get a better sense of what it is like to deal with this condition.
The Facebook group itself has been a valuable tool. Members share stories, advice, and ask questions. They learn from each other.
(There are other Facebook groups that help as well. Molly and Joey’s group, called Mother and Son’s Journey with Dementia, is a public group, intended to educate. There are several private groups where you can ask a question only visible to members and learn from others. To find them, just search Facebook for Alzheimer’s and/or dementia.)
But all good things come to an end and we all knew the end for Molly, as for most dementia patients, isn’t improvement, cure, or recovery. She began to struggle walking earlier this year and spent more of her time sleeping. After 54 mostly weekly episodes, the video series stopped production.
More importantly, others are sharing their stories, asking questions, providing advice, and learning from each other.
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Joey, of course, continued to visit and post updates. In dealing with his grief, he tried to remain positive. In one update, he shared a short video of himself dancing as he left Molly’s room at the assisted living center. He explained, “I dance my ass out of her room. It’s working. It’s difficult to cry and dance at the same time.”
Molly died on June 12th, ending her personal struggle, but the movement she started will continue.
Her supporters have been vocal, changing their Facebook profile pictures to honor her and sharing a Frosty. At one Wendy’s, there was a report, possibly apocryphal, that they had run out of Frostys because of “some lady named Molly.” More importantly, others are sharing their stories, asking questions, providing advice, and learning from each other.
Our struggles differ. Dementia can be caused by a number of underlying diseases, Alzheimer’s, Lewy Body Dementia, Vascular Dementia, Fronto-temporal Dementia, and several others. Each present differently, though there are some similarities as well.
To learn more about Molly and Joey, visit Mollysmovement.com or search for “Mother and Son’s Journey with Dementia” on Facebook or Youtube.
Most importantly, know that if you are a dementia patient or caregiver, you are not alone. We can all learn from each other.
—A version of this piece appeared in the Porterville Recorder on June 27, 2018.
Photo by Debora Cardenas on Unsplash