The two hour drive from D.C. to Berkeley Springs gives me time to build my courage on the way there. I give myself a pep talks. Visits are difficult. They are incredibly emotional. Mom’s disease has stolen her, and I struggle with it at times.
Every mom visit is something new. She is talking less. She is less steady on her feet. She engages in eye contact in shorter intervals and keeps her head down. I consider this the continuing education of dementia.
Dementia is a horribly cruel disease. An easy fact to comprehend, and an excruciating fact to live.
Part of this education is physical and mental and learning the ever-changing capabilities of my mother. They seem to ebb and flow, continually decreasing little by little. These new levels of decline are what we call the new normal.
Part of this education is emotional and learning to accept watching your mother slowly disappear before your eyes. She lost her ability to engage in conversation, to feed herself, etc…. I remind myself of this to and from Berkeley Springs every visit. I am rational. I know this will never get better. I accept that. Doesn’t make it any less difficult.
Sunday’s visit was a new normal. Sitting down in the chair beside her wheelchair I smile and offer my ceremonial “Hi Mom!”
She stared at me for a little bit. It felt like a long stare. Silence feels heavy in those moments.
“Hi Mom.” Her response came out muffled and slightly slurred.
“I’m not Mom. What’s my name?” I am trying to keep smiling and sound upbeat.
She stared at me for a while. Her eyes are beautifully expressive. She stared and said nothing. She genuinely didn’t know who I was.
This didn’t feel like a temporary slip of the memory. She has confused me with someone before. I was Billy for a while.
There was a chunk of time after I came home from Liberia that she called me Billy. It lasted a few months. She had a brother named Billy. We’re both tall. Had beards. Handsome with charming smiles. I was Billy for a while but that passed and I became Joey again.
“I’m not Mom. What’s my name?” My second, third, fourth, and fifth attempt over the next hour come out flat, and like a whisper.
She’ll stare at me for about 30 seconds to a few minutes, then eventually lose interest and look away.
Over the next 45 minutes we periodically look at pictures of Matt and me, playing the game of pointing and asking “Who’s this?”
Matt is identified each time. With me there is silence. She stares at me, deeply, then looks away as if the question times out.
She has struggled to remember my name for about a two months. After a while she rattles it off. No harm no foul, and I think nothing of it. This, however, is different. She has no idea who I am.
The two hour drive from Berkeley Springs to DC gives the time to continue my emotional education on the way home. There is a new normal. I’m not her Joey DeMarco anymore. I’m not even Billy. I have become the polite stranger that comes to visit. I wasn’t ready for this part yet.
Matt is now the last man standing.