As a little boy, I would ride in the backseat of my mother’s car. There I witnessed her and other women routinely checking in on elderly friends and family. Some would talk a lot when I met them, but they were others who wouldn’t say much and would have a blank stare. When we visited my aunt, she would have that stare.
She rarely left the house because of her imaginary fears. Outward, her appearance was healthy–inside—was a decaying mind. She had Alzheimer’s disease. That was my first experience with the deadly plague and part of my foundation for creating “My Music,” an independent film raising awareness of Alzheimer’s disease, forms of dementia and the role of Black caregivers.
In the film, “My Music, “ we highlight the African-American woman, a caregiver for centuries, since coming off the slave ships in the 1600’s caring for Alzheimer’s, dementia and other illnesses of the slave master and his family. During Jim Crow, she took care of others who saw Black women as second-class citizens. Now, in the 21st century, the Black woman is accompanied by our men and together we are caregiving wives, husbands, mothers, fathers, daughters, sons sisters and brothers.
According to the Alzheimer’s Association, Black’s are twice as likely to develop Alzheimer’s disease and dementia, yet we’re still least likely to confront medical tragedies head on due to these factors:
In Black communities we are 20 percent more likely to experience mental health problems than the general population, but less likely to communicate and educate one another. The result of this alarming, yet often ignored, topic feeds into the lack of development and effort by families, churches and community organizations to offer education and services for those in need. “We don’t talk about family outside the house.” These words echoed clear as day when I think of my Black family and are often heard in Black homes when the conversation is Alzheimer’s or dementia.
And then there are those relatives who painfully avoid talking about a family member having the disease. “Don’t talk to me about mama,” “I don’t want to hear that about daddy,” “Don’t say that about auntie.” We are comfortable seeing mental illness on the street, outside of our homes, outside of our families, but for many, it is still unthinkable to talk about it when it’s about our family. This breeds denial and can lead to rarely bringing a loved one to a family gathering because of assumed embarrassment.
I have no doubt that we caregivers are the Titans, who in the later stages of the disease do everything from bathing our mother or father, to helping them put the right shoe on the right foot and the left shoe on the left foot. I’ve watched friends and family, Black and White, male and female, struggle with the joy, depression, frustration, guilt, pain and fear that takes hold of us at some point. As a caregiver, you become numb to feelings and emotions, riding the roller coast of depression and guilt.
I was raised and molded by the philosophy of “I am my brother’s keeper” and that it is an honor to be a caregiver. The challenge is that, hopefully, we can overcome Alzheimer’s and forms of dementia by creating a stronger conversation about caregiving among our families, communities, local, state and national government. I appreciate the African-American women and men who join me every day with this daunting task.
Kenneth Jones is a professor at Florida A&M University and writer and director of “My Music” and “Enduring Love,” a film and documentary about Alzheimer’s disease, dementia and the lives of caregivers.