“The day the wheels fell off” refers to the day that my family was left with only one option – to involuntarily commit our otherwise healthy 80-year-old mother to a locked psychiatric ward where professionals might stabilize the psychotic delusions and hallucinations that plagued the onset of her dementia.
Her decline showed little evidence of the more traditional memory loss and confusion that you expect to see with this disease. She moved from full independence to hallucinations and delusions – psychotic breaks with reality.
Her illness looked more like schizophrenia, leaving us confused about next steps in her care. And at 80 she looked like no other patient in that psychiatric ward.
Her geriatric psychiatrist reflected, “Yes, your mother experienced florid delusions and hallucinations. Although the timing was atypical for dementia, it’s not rare. We see 10-15% of dementia patients manifest delusions and hallucinations at early stages of their illness.”
I did the math quickly in my head; that amounted to some 500,000 – 900,000 real people. I thought about their family caregivers, each likely looking to contemporary literature attempting to find their story. But, my search only ever yielded mild similarities at best and sobering contradictions at worst.
The doctor continued, “For most, we would not expect to find behavioral symptoms like your mother experienced until the late stages of the disease. By then, folks are significantly disabled and likely in high-level care situations.”
But, my mother drove herself to the doctor to find out what was wrong; she was not cognitively impaired when the delusions and hallucinations first started.
After the Psych Ward, she couldn’t return home. She moved to a Memory Center where she looked and acted normal, except when the delusions and hallucinations hit. Friends and family would ask, “Does she know who you are?” “Yes,” I would answer, the very question unsettling. How unfortunate, the image of Alzheimer’s disease is often one-dimensional.
After Robin William’s suicide and the reports of his underlying illness, people would say, “She must have had Lewy Body dementia.” I would try to explain the difference, mostly to people who didn’t care to know such details.
“In your mother’s brain, the ability to tell the difference between vision and reality broke down. We don’t really know why. Plaques, tangles, lesions, lewy bodies could all be part of the answer. The bottom line is that her internal and external worlds blended very early in the arc of her illness. The behavioral issues, Lisa those are the dark side of the disease,” the doctor said.
Yes doctor, I thought. For us, they were the stuff of involuntary commitment.