This story is based on an interview with Jessica C. Guthrie, 38, a full-time carer and caregiving consultant from Fredericksburg, Virginia. It has been edited for length and clarity.
In 2013, we noticed that my mom, a teacher’s aide, was getting a little confused about things at the school she’d had no problem with before.
She had always been very routine, very structured, but she started repeating herself and getting lost in familiar places like the pharmacy or grocery store.
The following year, she was involved in a major collision in her car on the way to church. She was unaware. There were also episodes of anxiety about going to work and being around other people.
I’d call Mom, and she’d start asking the same questions over and over. She would always try to hide it by saying, “Oh, I was just testing you and making sure you were following along.”
She knew something was changing in her brain and wanted to save face.
I was working for Teach America in Dallas at the time and felt awful about being more than 1,700 miles away. She wasn’t herself, forgetting to eat and pay the bills.
At first, Mom was independent
Her brother, a physician, persuaded her to undergo a basic evaluation at a memory clinic. She ended up having brain scans and other tests and, in September 2014, was diagnosed with early-onset Alzheimer’s Disease.
She was only 65.
Still, she was pretty independent and comfortable in her own home. During my first visit after her diagnosis, I put systems in place to remind her who she was and help keep her occupied.
I prepped meals for the freezer, organized her medications, and, over the next five years, flew back and forth between Texas and her home.
Her condition got worse. In 2019, I walked into her room and saw how grateful she was to have me back home. I moved to Fredericksburg permanently and worked remotely.
I got to see my mom’s personality again, her laugh, and her smile. But by 2022, she was no longer mobile or able to sit up in bed.
It was a pivotal point because her Alzheimer’s shifted from being just cognitive changes to physical challenges. I was worried about her falling, so I installed grab bars in the hallway.
I was burned out
She started losing her words and lost a significant amount of weight. We were using a Hoyer Lift to get her from point A to point B, and I began feeding her.
I felt that I couldn’t keep working and be present for my mom. I went on six weeks of family leave, plus a four-week sabbatical.
My time away made me realize I was burned out. My job was vice president and chief program officer. Managing a team while dealing with the emotions and practical experiences of caring for Mom was too much.
“I’m important, but not that important,” I thought. “This job isn’t going to fulfill you, and you’ll regret not being there for Mom.”
I left the nonprofit in 2023 after 11 years.
One big thing was the financial side. I learned very quickly about the cost of carers. Leveraging a care support person or care companion costs at least $25 an hour, and I could only afford four hours a day.
A decent memory care facility was beyond our budget
It got to the point when I was spending up to $3,000 a month. Then, when you tack on supplies and medical equipment, it was close to $4,000.
Mom, now 77, didn’t qualify for Medicaid or state-based aid. We fell into the messy middle with no assistance.
The cost of a decent memory care facility is between $7,000 and $10,000, which wasn’t possible on our budget. You’re left to figure it out somehow, and I stepped up.
We get by on Mom’s Social Security, which covers her home expenses, and my savings. I had to withdraw money from my retirement fund once when things got so low that I had to make sure I could pay the bills.
I set up a consultancy, which advises and advocates for other carers, but between credit card debt, dipping into savings, and retirement accounts, it’s a huge puzzle. I am also a spokeswoman for Aeroflow Urology.
It’s been a very long process. I was 26 when Mom was diagnosed, and I never thought I’d spend nearly 12 years as a carer. But I’m deeply committed to walking my mom home, as I call her end-of-life journey, and giving her the respect and dignity she deserves.
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