Because Alzheimer’s is sad. Very *&^*% sad.
Not what you’d expect to hear from someone who created a company that hires comedians to use their talent to make people with Alzheimer’s, their caregivers, and their families laugh. And yet, every time I visit my mother, now in the late stage of the disease, I am reminded of just how relentlessly sad it is.
Monday morning’s to-do list – right after making dentist appointments for the boys, confirming vaccines are current per in time for school, and there’s enough food in the house for teenagers – was a visit with my mother. We had a scare a few weeks ago. There was talk of morphine drips and funeral parlors, where everyone even said their good-byes. She had contracted a nasty bug that was looking tragic until she 100% shook it off by sundown. After a five-hour day starring in the saddest movie no one was filming, my mother emerged from her deathbed, headed to the dining room, and could be heard across the dining room banging the table with a knife, like Henry VIII, God bless her feisty soul.
When I showed up to see her this morning, she looked nearly angelic. Smiley, unencumbered by judgement, peaceful. The people who help care for my mother often say to me, “We decided if you have to have this disease we want to be like Muriel. She’s so sweet.” Which reminds me of an expression my father used to say, “If you live long enough….”
I kissed my mom hello and she was ready for breakfast with a smile, happy to see me. Maybe not me, her daughter, but definitely this nice brunette who visits her, holds her hand and brings her sweets. “Everything good mom?” I asked. “Thirsty?” She smiled. “Yes?” She nodded. She knew what I was asking, a small victory.
I found the pink Guava juice she likes and added thickener. You need thickener, some type of tapioca powder, because if liquid rushes down her throat she can choke. I brought the glass to her lips. She drank. We paused. She opened her mouth again for more, reminding me of my kids when they were born. My mother. The woman who screamed at people on the phone in the name of a deal or anything having to do with money in the 90’s, opening her mouth like a baby. Simple, primal, vulnerable. If you live long enough.
We stared at each other. “It was Gideon’s birthday yesterday. He turned 12 Mom, can you believe it?” I opened my eyes wide, exaggerating my shock to see if she was with me. She opened her eyes wide back, likely no idea what I said, but still up for a good mirroring game. She drank some more juice. We sat some more. I kept held her hand.
Then the inevitable weight of where we are and who she is and who she was and who I am and what I’m doing rolled in like fog in an O’Neil play: darkness descends.
My chest felt heavy, I needed to take a deep breath but wouldn’t because I didn’t want to exhale more tears, my head snapping at me, “enough already with the crying!” But feeling just as intensely like one more day, one more hour in this place, facing the overwhelming disappearance of humanity, of my mother, was going to take me out.
I looked at my watch, my father’s actually. My husband had it restored for me after it lay in a drawer for 20 years after his death. It was time to pick up my son and take him to tutoring. This is how I spend my days now, commuting between a woman who doesn’t know me and two teenage boys who wish they didn’t. That’s a joke I performed recently. Not as funny in black and white.
I look in her eyes and I don’t want to leave her. But I desperately want to leave her.
Then I remembered one of my comedians, a handsome man she loves – despite the brain loss my mother still knows handsome – was coming to see her this afternoon. “Michael is coming today, Mom. You love him. He’s the handsome one who hugs you a lot.” She stared ahead blankly, she doesn’t remember him. But later when I start to worry that maybe she is sitting alone, I will.
I’ll remember that she is being showered with attention from someone who is not also sad. Michael doesn’t get tripped up remembering laughing with her at Loehmann’s, eating Entenmann’s coffee cake cross-legged on the floor of our new house in 1972, or how she stayed with my older son as I pulled away to deliver the younger one.