From childhood through middle school, I considered my life “normal.” My worries consisted of homework, grades and sports. Then, my mother started changing. She grew more forgetful, became less reliable, and her behavior turned erratic. She soon received a dreaded diagnosis: early-onset Alzheimer’s. She was just in her 40s.
Suddenly, I had a new, very different worry. My mother had been my rock. Overnight, I was now her support. Firsthand, I learned how difficult it can be for patients suffering from this terrible disease and their caregivers.
More than 6 million Americans suffer from Alzheimer’s. It affects one in nine people over 65. As the baby boomer generation ages, this number could become 40 million by 2040. Although memory loss remains a trademark of the disease, it’s more than that. Many Alzheimer’s patients experience neuropsychiatric symptoms — and are restless, anxious and sometimes display aggressive behavior.
With my mom, we didn’t initially realize what was happening because her symptoms weren’t the usual memory and motor function loss. We didn’t know then, but changes in normal behavior are an early warning sign. My mom’s personality shift hit my family during my junior year in high school. When I returned home one day, my mom showed me a U.S. News & World Report magazine. She had read an article three times but couldn’t understand it. That couldn’t be right. She was a speech-language pathologist; her career consisted of reading scientific articles.
Carrie Shaw and her mother
(Photo provided by Carrie Shaw)
For the first few years, we were in limbo. We knew our mother had Alzheimer’s, but she could still do her usual daily routine. That wouldn’t last. Slowly, I began taking on more responsibilities caring for my mom. I dropped out of school for a semester, partly to grieve my mother’s diagnosis but also to help look after her. I worked part-time jobs. After I graduated, I became the primary around-the-clock caregiver when she could no longer bathe, eat, walk or talk.
No one can prepare you for the tough conversations — such as taking my mother’s car keys away for her and others’ safety.
I share my story to break down the stigma around Alzheimer’s. I want caregivers to know it’s OK to be overwhelmed. You’re not letting your family down when you bravely seek help.
Being a primary caregiver is a trying experience that becomes more difficult when caring for a loved one. Yet, millions of Americans perform these duties daily with little to no support.
These caregivers — working on the frontlines — aren’t compensated for the work, time and emotional stress. The Alzheimer’s Association recently estimated that 11.5 million family members and other caregivers provided 18.4 billion hours of unpaid help in 2023. This time amounted to nearly 31 hours of care per caregiver weekly.
Policymakers in Washington must provide support and relief to these 11.5 million family caregivers. The FDA recently approved a therapy, and more in development, to lessen and treat the more difficult symptoms that people living with Alzheimer’s sometimes exhibit. However, the Centers for Medicare and Medicaid Services has restricted how and where these treatments can be administered. Caregivers need a full toolbox, including access to FDA-approved treatments for patients suffering from difficult symptoms.
Thankfully, I have been privileged to carry on my mother’s legacy through my work at Embodied Labs, where we develop virtual reality technology to help caregivers experience what it is like for patients suffering from Alzheimer’s. However, I realize not all caregivers can be as lucky to have this resolution through personal journeys.
I hope my story can help break the stigma of caring for loved ones with Alzheimer’s, show the importance of supporting caregivers, and educate people on how to spot the early signs and symptoms of this terrible disease. To the millions of caregivers out there, you are not alone.
