This as-told-to essay is based on a conversation with Veronica Shanklin, 45, from Dallas. She is featured in the upcoming PBS film, “Wine, Women, & Dementia,” about the challenges of dementia caregiving for a family member. Her interview with Business Insider has been edited for length and clarity.
In 2012, I worked as the marketing officer for seven community colleges in Chicago, renting an apartment downtown.
The hours were long, and the pressure was high. With a Bachelor’s in Business Administration and a Master’s in Arts Management, I was at a crossroads in deciding where to take my career next. I wanted to stay in the same field and thought about moving to Atlanta or California.
However, that fall, a frantic phone call from my mom threw everything up in the air. My grandmother, then 82, who I called “Mama Nell,” had become aggressive and physically lashed out at my mom. They’d shared a home in my native Dallas since Mama Nell was diagnosed with Alzheimer’s Disease a few years earlier.
Mom, who worked full-time, had rushed to Grandma’s side because her carer said she was agitated and exit-seeking. Mama Nell was taken to the hospital by ambulance after they called 911.
My mom, then 66, was in over her head. I got her secondhand updates from the doctor, and it was hard to know what was happening. I flew to Dallas to help. I didn’t know the first thing about eldercare, but the social worker said we had 24 hours to pick a nursing home for my grandma.
I initially thought it would be a temporary career break
Mom was traumatized. We didn’t know it at the time, but her state of mind reflected the onset of her own dementia. There was hardly any place for her to sleep on her bed because it was covered in papers, envelopes, and bills. She said it was her “taking care of things” system, but the utilities were being cut off because she’d forget to make payments.
It was all on me, but I found a nursing facility for Mama Nell after asking the advice of some former school friends. She stayed for a while, but it was horrible. I looked at other options, but everywhere fell badly short or was way too expensive. She had no choice but to return to Mom’s — with me moving 900 miles from Chicago as her primary carer.
Quitting my job in May 2013 and giving away the furniture in my apartment was definitely stressful, but at that moment, it felt like something that needed to be done. I didn’t think it was crazy because I assumed it would be temporary. “I’m going to go home for a while, help my mom take care of my grandmother, and then go back to my life,” I thought.
Soon, Mom’s behaviors followed a similar pattern to my grandma’s, although she stayed verbal. She started repeating herself and had plenty more issues with managing her finances. When she was formally diagnosed with dementia later in 2013, I knew I was there for the long haul.
I’d gone from a full-time corporate wage that enabled me to support myself to earning practically nothing. I started volunteering to try to stay in the game and doing a bit of freelance website graphic design work. But I didn’t get a full-time job because my salary would only have covered the care of my mom and grandma.
Other people do it, but it wasn’t a viable option for me — whether financially, physically, or mentally — to work full-time and then have a second job as an unpaid caregiver when I got home from the office.
My relatives had Medicare, but it doesn’t pay for non-medical home care, also called personal care assistance. It’s private, and you have to pay out of pocket. This type of eldercare is a minimum of $25 an hour. Then, if you consider placement in a memory care facility — which I have never really been interested in — it would be a minimum of $4,000 or $5,000 a month.
I’ve established a nonprofit to help dementia carers like me
Mama Nell died in 2017 at the age of 86. For the past seven years, it’s been just me and my mom. I love her dearly but have started thinking about what I’ve sacrificed. I sometimes ask myself where might I have been career-wise or family-wise if I hadn’t taken on this role of carer? Would I have a husband and children by now?
Still, I’ve been resourceful and intentional. In 2019, I founded the nonprofit Dementia Care Warriors to help Texan caregivers of loved ones with Alzheimer’s and related diseases. It gives advice and information on things like free “senior companions” — people who provide respite care funded by other non-profits. Mom’s companion takes her out to our local senior center and other places for lunch. She comes for five hours a day, four days a week. It gives me a break.
Meanwhile, my organization provides me with a social life and a sense of camaraderie. We seek out — and enjoy — each other’s company because we’re living the same life as carers.
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