Life After Mother: Horrors of Dementia

My mother threw a horrifying dementia-fueled hours-long hysterical tantrum when I tried to temporarily house her in a care facility after her first stroke in 2017. Her torrent of hysterical rage exhausted her so she’d nod off for a while, then go right back to screaming like a wild terrified animal, well into the night. The police were called twice and eventually took her back to the hospital — I had to get her to her house and get a caregiver — which she promptly threw out of her house.

I asked the care facility’s head for advice. He answered, “Psychotic drugs.”

Being told your mother needs psychotic drugs conjures up every stereotype of the hysterical mental patient. I thought all other methods should be tried first  — tests, counseling, evaluation—and drugs should only be a last resort. Because she was already diagnosed with dementia, I thought her condition should be evaluated to determine how much of her behavior was related to dementia and how much might be an undiagnosed mental condition before just popping psychotic drugs in her.

I spent the next two years unsuccessfully trying to navigate the healthcare system in a vain attempt to get my mother the quality of care I believed she needed. It didn’t help that my mother’s HMO insisted my name wasn’t on my mother’s healthcare records so they couldn’t share her healthcare information with me, while my mother vacillated between insisting my name was on her records and insisting her healthcare was none of my business. The HMO treated her refusal like a personal beef, not evidence of paranoia.

Had my mother been diagnosed with Alzheimer’s, a specific brain disease that results in dementia, she would have accessed a delivery system — specialists, facilities, associations dedicated to research and care of the disease. I asked repeatedly to have her tested specifically for Alzheimer’s, but the only valid answer I ever got was, a brain scan showed no evidence of Alzheimer’s. Brain scans can vary, though, even sometimes depending on what machine does the scanning.

Instead to my knowledge she was only ever given the verbal test that Donald Trump famously ridiculed as, “Person, woman, man, camera, TV,” not even the written draw-the-clock version. She was only ever diagnosed with “mild” dementia, a general term that relates to the disorder known as Alzheimer’s roughly the way “chronic fatigue” relates to Chronic Fatigue Syndrome. As we learned during the COVID pandemic, a patient’s symptoms may appear severe to casual observers — but not meet the medical profession’s definition of “severe.”

Only a few decades ago, a family’s doctor would have had a friendly mutual relationship with a patient and family. Today a patient doesn’t “see a doctor” but instead is expected to “access healthcare delivery systems.” I was the patient’s only child, while her other relatives and her friends offered no useful assistance. I was the patient’s only child, but that wasn’t enough to have access to her medical records. I was the patient’s only child, meaning if anything happened to her, I’d take the heat for it, but I was expected to do so with no readily accessible “delivery system” of my own.