Despite Dementia, Michael O’Brien Smiles
Twenty-one years ago, when I became a full-time family caregiver for my father with dementia, few people talked openly about living with dementia. Most didn’t want to talk about it at all and their families usually spoke about it, quietly. We often used the term, Alzheimer’s, to describe nearly all cases of dementia except for Parkinson’s.
Much has changed over the years. We’re growing more comfortable speaking about other causes of dementia including vascular, Lewy bodies, Parkinson’s, and fronto-temporal lobe. More people with dementia are feeling empowered to speak out. We are fortunate to be able to hear the VOICES with Dementia – vigorous activists, advocates, and teachers for all of us willing to listen and learn. That is, until dementia prevails and steals their voices.
Such is the case with Michael O’Brien, who was diagnosed with younger onset fronto-temporal lobe dementia at age 60 in 2008.
Thanks to the gift of videographer, Connor O’Brien and his brother, Kevin, of MiliaPictures.com, we view a glimpse of a typical morning with their father in this three-and-a-half-minute (mini) documentary.
Son-caregiver, Kevin writes in an email (slightly edited) when asked who his father was before dementia.
My father was a sensitive, kind, and invested father. Although he has lived with dementia for nearly the entirety of my adult life, I hold memories of bike rides to the beach, family basketball games, and one-on-one study sessions after school.
My father maintained a steady and sometimes goofy positivity and had a knack for gently turning issues into activities to be tackled as a team.
Before his illness began to hamper him, he was motivated and purposeful, always exercising, eating better, reading, organizing our next camping trip, or throwing himself deeper into his work as a Special Education Teacher.
Brothers, Kevin and Conner, and their mom care for Mike full-time.
Featured, is a man who appears to be gentle with a child’s innocent smile as he tries to recognize his caregiver’s face. This mini-film shows O’Brien being helped out of a soiled bed and assisted with showering. It shows him eating breakfast with assistance. Next, we see him walking slowly toward the living area with what appears to be a flat stick and a butter knife. As he’s helped into his recliner chair, we only see the flat wooden stick.
The O’Brien family’s intent is to offer a lens of empathy with caregivers and people with dementia. Furthermore, their goal is to raise awareness with this brief yet unfiltered look at the realities of caregiving and dementia. As caregivers know, it’s more than a full-time job that requires constant monitoring to ensure a loved one is cared for with respect as captured in this video. Not shown are the impulsive and inappropriate behaviors often associated with frontotemporal lobe dementia.
Category Winner by Australia’s Reel Health International Short Film Festival
Listed as an Official Selection by the Aab International and Berlin Flash Film Festivals.
Click to view the video above or at this link