I was twenty-five when my mother was diagnosed with dementia. The signs had been present for quite some time, although the exact moment of its malice infestation cannot be determined. I can’t really say for sure when I noticed the change because my mother had always been an eccentric, dance to the beat of her own drum, irresponsible sort of woman. She was used to being taken care of. In a way, she was a kept woman. Her father kept her when she was a girl, and then my father kept her as an adult.
When my sister and I were kids, and still shared a room, our mother would storm into our room in the early hours of the morning, while the sky was still black and blue from the darkness of night and the promise of the day, declaring it a “rain day!” The concept was exactly the same as a snow day, except instead of snow it would be raining. God forbid the rain ruin my mother’s perfectly permed locks. Back then her hair was almost as large and out of control as she was.
It was small things in the beginning; an unreturned phone call, a misplaced TV remote, confusion over what day of the week it was, then what month. Soon after she was let go from her job of thirty-seven years, where she dutifully served as a bookkeeper for a real estate firm. That’s when things took a turn for the worse. Suddenly my mother, who always prided herself on her appearance, dressed to kill in her Chanel pants suits, Stuart Weitzman heels, Hermes scarf, and frosted pink lip-gloss, looked and smelled like a common NYC homeless person.
One day at work I received over forty missed calls from my mother. She wanted to know when it would be tomorrow. She’d been sitting in her living room, alone, watching the clock on her phone waiting for tomorrow to come because she thought we had plans. We didn’t and I lost it, big wet tears running down my hot cheeks. I couldn’t stop picturing her sitting in her apartment, listening for footsteps outside her door, expecting with anticipation for those footsteps to be me. I was overcome with guilt and for that, I began to hate my mom along with the disease because at times the two were indiscernible.
Something I didn’t expect was the physical aspects of what were to come. You forget that with a disease like dementia, that the brain controls EVERYTHING. Soon her body started to betray her along with her memory. She began having mini strokes and sporadic seizures regularly. Every time my phone rang, I sprang into action, ready to take on the next catastrophe. There was a two-week stint at a hospital in Astoria after she’d had a particularly bad episode. I spent day and night rushing back and forth between the hospital and my apartment. I’d show up with a sandwich and book and just sit there waiting. Often time’s people confused my mother for my grandmother. I didn’t know whether that should make me feel angry or amused. Several times I had a social worker try and convince me to go to a support group for family members of patients with dementia. I didn’t think that was a good idea. The thought of sitting in a room with people twice my age talking about our feelings didn’t feel like a solution to my problem. Most of the time it was just a blur of faces rushing in and out of the room, like a brushstroke on canvas, still unsure of its next move.
There is one particular memory that stands out amongst the rest in this dark period. My mother was staying with my fiancé (now wife) and me; she’d just had a hysterectomy and had been treated for a severe bladder infection, a result of her incontinence and poor hygiene. My fiancé was at work and I was preparing a warm bath for my mom. I lead her into the bathroom and helped her out of her daisy covered nightgown and surgical underwear. For a moment it was just the two of us. As I looked at her trembling legs, what were once vibrant playful blue eyes, now vacant, and stretched skin over protruding ribs, I could feel the lump in my throat growing. This wasn’t the way things were supposed to be. I wasn’t supposed to be bathing my sick confused mom. I wasn’t supposed to be taking her to doctor’s appointments, meeting with lawyers, preparing her will. She was supposed to be helping me plan my wedding. She was supposed to be gushing with me over wedding dresses and flowers and every other stupid thing I had to do on my own. I wanted my mom back. I needed her, and in that moment I felt so severely slighted I could barely stand it. The tears began to flow freely at the unfairness of it all and just then mom sneezed and peed all over my bathroom floor. There was nothing else to do but laugh, and so we did. Me, covered in tears and snot, and my mom naked and covered in pee. Both standing in a tiny Brooklyn apartment bathroom laughing and crying. Confused, but not alone.
Originally published at medium.com