Clinically speaking, Lewy body dementia, or LBD, is a brain disorder that impacts a person’s behavior, movement, memory and cognition, along with basic bodily functions like blood pressure and bladder control. But for Joey Daley, this sterile list of symptoms doesn’t capture what coping with dementia is actually like on a daily basis.
This is what inspired Joey to create a series of weekly YouTube videos, which he calls “Molly’s Movement.” The series chronicles the daily life of his mother, Molly, who has LBD. By showing how Molly is coping with dementia and what her everyday life looks like, Joey hopes to educate his audience about LBD and remind viewers that there are real people living with this disease every day.
Joey explains that too often, people think coping with dementia means occasionally forgetting where you left your keys. In reality, LBD can have devastating consequences, both for patients who have the disease and for their loved ones.
For instance, in one harrowing video, Joey shows the stark contrast between one of the first videos he ever made (in January 2017) and one of his more recent videos (filmed in July).
Although only 7 months had passed, Molly’s memory and cognition had already dramatically deteriorated. In the clip from January, she spiritedly talks about a trip to Lima with Joey, cracking jokes about a drink that she’s holding in her hand. She appears to be completely lucid and full of energy. She speaks quickly and shows off her warm sense of humor.
But when the video cuts away to the more recent clip of Molly, it feels like watching an entirely different person. Sitting in the car with Joey, she’s no longer as lucid as she was in January. Molly has trouble staying on topic, forgetting what she was about to say mid-sentence. She also struggles to keep track of time, unsure how long it’s been since Joey first picked her up from her care facility. Her once-glimmering eyes appear glazed-over, and she speaks in a slower, more monotonous tone.
Videos like these are difficult to watch, but they serve as an important reminder for viewers: a list of symptoms doesn’t capture what happens to real people with a disease. Forgetfulness isn’t the only difficulty when coping with dementia. Relatives also have to deal with a change in their loved one’s personality as dementia takes away some of their beautiful, quirky, vivid characteristics and replaces them with dulled-down traits. This alone can be extremely difficult for loved ones to watch, especially when dementia impacts a bold, warm person like Molly.
But the videos also provide hope to those coping with dementia. In a different clip from July 2017, Molly is far more lucid.
Joey films her as she’s getting a haircut. She talks to him about the weather and even cracks a few jokes, as she did back in January. Videos like this show that coping with dementia can be unpredictable, and sometimes has its beautiful moments. Loved ones grow to appreciate and relish these lucid days, and Joey reminds his viewers that they can still enjoy the time that they have left, even as the disease progresses.
To watch “Molly’s Movement” in its entirely, you can visit Joey’s official YouTube channel.
If you would like to learn more about coping with dementia, check out this post from Tani Bahti about her mother’s life with Alzheimer’s disease.