My mother, Mama Jean, punched the doctor who diagnosed her with Lewy body dementia. He hit her knee with a rubber-headed hammer and she hit him back, right in the stomach.
“No patient has ever done that before.”
“You’ve never met Jean Brickhouse,” my father beamed with pride.
Mama Jean’s mind was already gone, but her reflexes, the ones that declared, “Don’t mess with me, I’m in charge,” were still firing. It was the kind of a moment — a brilliant spark of lucidity — that crystalizes the essence of a person after her mind has been hijacked.
Lewy what? Is the reaction I usually get when I tell people what was wrong with Mama Jean. Almost everybody has heard of Alzheimer’s, but few know about “the other dementia,” Lewy body dementia (LBD). Despite a couple of famous names attached to the disease — Robin Williams and Casey Kasem — LBD is still in the shadows. LBD is an equally devastating form of dementia as Alzheimer’s, and it is progressive and fatal. (LBD is named for Friederich H. Lewy, who discovered in the early 1900s the abnormal protein deposits that disrupt brain function.) In Alzheimer’s patients, lapses in short-term memory are among the first symptoms, while LBD patients might encounter severe disruptions in attention and judgment, hallucinations, delusions and acute sleep interruptions. According to the Lewy Body Dementia Association, LBD “affects an estimated 1.3 million individuals and their families in the United States, but many doctors or other medical professionals still are not familiar with LBD.”
Her whole life, Mama Jean knew how to make a name for herself. In Beaumont, a small Texas town, she was a Cadillac-driving, grand Southern belle of a hostess who rose to the top of the financial world as a lone female stockbroker, leaving in the dust the good ole boys club who were none too appreciative of her high heels on their turf. I’m making a name for her in death as a face to be counted among minds and lives lost to LBD.
In her early seventies, long-retired on the cushy nest egg she’d made for herself and my father, the things she’d been good at started to misfire terribly. Her once-a-week helmet of a hair wasn’t done anymore. Always in the driver’s seat — literally and metaphorically — her driving deteriorated to near disastrous results. She drove her red Cadillac through the wall of her bridge club. Lucky for her fellow bridge players, she was early so no one was hurt, including her. A year after that, she drove the repaired Cadillac to the beauty salon. Not unusual, except she wasn’t wearing any pants. Her priorities were in order, but the execution was misfiring. The worst: her synapses didn’t fire in enough time before the great recession of 2008. She didn’t move her money when she had the chance, and all that clawing she did to build a nest egg was wiped away. If a traumatic event can jump-start a latent disease, that was the event.
Not long after that pant-less drive, Mama Jean’s mind exploded into a bad acid trip of wild hallucinations — seeing babies in the corner of her bedroom — and believing her worst nightmares were true. Was it Alzheimer’s? My family and I didn’t know. We made a series of visits to doctors, none of whom ever mentioned LBD as a possible cause. They never mentioned LBD, period. The first we heard of it was from a family friend whose husband had died of LBD.
We hospitalized her. The facility was comfortable and she was given some lovely pills to stabilize her, but no diagnosis came. Again, LBD was never even mentioned — and this was the geriatric unit of the facility. We finally got our answer when we found a neurologist who specializes in memory disorder. Thanks to that family friend and not to any of the doctors we’d seen to date, we had LBD in the dark corner of our minds. Still, when the diagnosis came, it was a punch in the stomach.
There is no cure for LBD, and there aren’t any significant medications to slow or relax its course, save for some palliative drugs. Many people live with LBD — and they don’t live well — for many years. Lucky for Mama Jean, her decline was swift from the time she was hospitalized. She died three months after that diagnosis.
The biggest battle LBD faces right now is awareness. As more attention is brought to it with famous names like Robin Williams and Casey Kasem, the closer we can get to figuring out how to cope with and treat it. Add Mama Jean’s name and face to the casualties from Lewy body dementia. For more about LBD and how you can help, visit the Lewy Body Dementia Association’s website.
Jamie Brickhouse is the author of Dangerous When Wet: A Memoir of Booze, Sex, and My Mother.
