In a sea of caregiving how-to’s and over-medicalized handbooks, I was overjoyed to come across Ky’a Jackson’s book, The Color of Care: A Beginner’s Guide for the African American Caregiver. Ky’a’s book epitomizes the very reason why I launched Kapok back in 2014 – to bring a more diverse perspective to our nation’s growing number of caregivers.
During my career as an academic researcher in aging, I was among a handful of gerontologists of color conducting research, nationally. The lack of diversity is why today we lack the resources and solutions for caregivers that resonate with racial and ethnic minority communities, who may experience unique challenges to caring for loved ones.
The Color of Care is a welcome addition to our library!
Ky’a successfully executes the difficult task of introducing important tips and tools for caregivers while connecting to her readers through her heart-felt and relatable personal experiences.
The Color of Care highlights the multitude of emotional, financial, and practical issues that caregivers will undoubtedly face at some point during their role from futility to grief.
Most of you will be taken aback, as I was, to learn that Ky’a’s journey as a caregiver began as a child, taking on the arduous work of caring for her mother who was enduring multiple sclerosis.
The Impacts of Race and Culture
Culturally rooted perceptions, negative historical encounters with the U.S. health care system, immigration, and income inequalities are just some ways that race/ethnicity can lead you on a distinct caregiving path.
Ky’a’s attention to the African American experience in navigating the waters of caregiving is nicely weaved throughout the narrative.
Recognizing the Black community’s aversion to therapy, she cleverly addresses the vital importance of nourishing her readers’ mental health and practicing self-care. She encourages caregivers with strong religious convictions to look to their faith in finding solace during difficult times.
She devotes an entire chapter, A Different Kind of Care, to encourage caregivers to be proactive and vigilant in the care of their loved ones, citing examples of the historic abuse that created much of the distrust that African Americans harbor towards the medical profession even to this day.
She refers to the Tuskegee Experiment, as an example of unethical public health research practices that exploited African Americans and talks about how systemic racism can hamper a caregiver’s ability to properly care for a loved one.
Indeed, there is substantial evidence in the health disparities literature, confirming that all else being equal, medical treatment options are subject to a providers’ conscious and unconscious biases toward you based on the color of your skin.
Connecting with Ky’a
As you flip through the pages, you immediately feel as though you’re listening to that really smart friend who’s not only been there but speaks the lingo and is frighteningly well-versed. Like when I came home one day, years back, and noticed an eviction notice on my door for being one month late on my rent. My buddy in the same building soothed my worries, flashed me her stack of prior notices, and walked me through each step like she had a law degree.
The Color of Care empowers caregivers, guiding them through the essentials from having your paperwork in order and prepping a Getaway Bag, to strategies for establishing your loved one’s dream team of providers that will work for your situation and preferences.
For those of you a little confused by all the medical terminology, don’t worry, she has you covered too.
Relationship Changes
Ky’a speaks to the changes in the relationships around her as she cared for her mother. As a way of self-preservation, she had to distance herself from people who weren’t reliable, while at the same time shielding her mother from negative influences.
The chapter, Brother Where Art Thou, speaks directly to the value of having the right people in your circle of support. Throughout her book, the reader feels reassured of the normalcy of feeling like you’re on an emotional roller coaster, including harboring feelings of guilt for needing help.
For All Experience Levels
I disagree with Ky’a on one thing. This book is not just for beginners.
Every caregiver feeling the intensity and pressures of their role stands to benefit from a return to good practices and validation.
From the visitors and questions we receive at Kapok, we know that even after years of caregiving, the conditions inevitably change.
Your loved one’s health may worsen or get better and change often happens gradually. Three medications become 12, one specialist becomes five, and you realize that you need to take a step back, get organized, and get a support system in place stat.
If you’d like to learn more about Ky’a Jackson, her inspiration and where she is today, please look out for an upcoming video interview that we will post on this page next month.
Do yourself a favor and check out her book, The Color of Care: A Beginner’s Guide for the African American Caregiver. It offers much needed inspiration and practical advice to caregivers to balance their mind, body and spirit.
You never know, you may pick up a few tricks to make life a little easier.
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