There are movies and there’s life, but Lewy Body patients can’t always tell the difference. It’s hard to know what they’re thinking and when their face becomes an inscrutable mask it becomes an emotional ordeal for everyone watching.
The face is a versatile body part, responsible for everything from communication to housing four of our senses (hearing, seeing, tasting, smelling) all while wrapped in a squishy coating of fat and muscle. We take for granted these senses, expecting them to guide us and care for our well-being. It keeps us from eating dangerous food, warns us of nearby danger from the environment, and tells us what time of day it is.
It’s also a powerful communication device, better in many ways than even our mouth or voice. Observant people spy subtle changes in mood or intent simply by noting the small twitches or perhaps a slight upturn at the corners of the mouth. My family tells me I wear my emotions directly on my face, even though I work hard to mask it behind a steel façade. I keep my emotions in check, a survival technique learned at a very young age. My therapist tells me I use it to control my environment and those around me to minimize the chance of harm from others. I give back to those around me exactly what I think they want to see, by hiding my opinions or smiling through intense anxiety. It’s an effective technique but exhausting over time.
I mention all this only to draw attention to the mask that develops over time on the face of a loved one with LBD. Due to the way LBD affects the muscles and how they fire, many patients appear to ravaged by Parkinson’s Disease and beset with tremors or spasms. IN fact early on they described LBD as Parkinson’s with Dementia because so many patients present with tremors as their first major symptom. It’s this effect on the muscles that forms the mask, shrouding the patient in a visage of sadness or depression.
LBD patients do indeed suffer depression due to the many debilitating factors associated with LBD. Worse, typical depression and anxiety medications make LBD symptoms worse, leading to psychotic episodes that only exacerbate an already untenable situation. If you’ve read the details of my father’s battle you’ll know how bad these side effects can present themselves, yet it’s different for every patient. Some never have tremors while others have few hallucinations. But over time as the muscles break down and the barriers in the brain dissolve into psychosis, the face tends to relax and form a mask, even if they aren’t experiencing extreme effects. This mask may appear cold, impersonal. But it isn’t the result of your run of the mill depression. It’s simply one more symptom.
My mother’s face sometimes sags due to a previous stroke combined with some Bells Palsy. Her smile is reminiscent of Buddy Hackett in his later years, one side of the mouth slightly downturned. But hers, like my father’s, merely marked the passage from one stage to another. You cannot take the mask personally; it’s not about you. It’s a sign of the struggle going on inside the patient, regardless of if they recognize it or not. Ignore the mask, love the person, but recognize it and tell the doctors. Over time they may lose the ability to express any emotion on their face, but they are definitely not without emotion.
We think back on how they were, as we remember them. We recall the funny things they said, the antics they exhibited when we were younger, and the moments shine like scenes from a familiar and comforting movie. To them life is now a series of confusing and jumbled replays from their favorite films, only out of order or with different actors. LBD robs us all of the pleasure of our favorite movie, as if edited for television or to appease some cosmic censor.
They can’t help how the mask makes them look or feel. So don’t let it rob you of the time or the love you have with them. Don’t think a simple pill will fix it or therapy will relieve it. One day we may find a way to bring them back from the shadows. But for now the movie is corrupted, pixelated, and sometimes buffers till we give up. But if we get a chance in the future we might get a sequel we can all enjoy. Or at least find a way to restore it to its original glory.
But for now just watch with them and find the joy in moment.