“Rafi’s getting married?”
It was two weeks before my son’s wedding, and I was both amused and annoyed by my mother’s question. On the one hand, I enjoyed sharing the details with her about her grandson’s upcoming wedding; we spoke of it almost every time we talked. On the other hand, my mother’s inability to retain any information in her short term memory was irritating. I knew it wasn’t her fault; it’s what the diagnosis of Alzheimer’s had led us to expect. At least she still knows who Rafi is, I reasoned.
The decision to bring Mom to my son’s wedding was one in a long continuum of difficult conclusions and realizations about how Alzheimer’s affects those we love.
We’d already braved one of the main hurdles—accepting that Mom was no longer capable of making decisions for herself. Her future would henceforth be determined by those who loved her, namely my father as her primary caregiver, and my brother Simon and I. How do you take away someone’s independence? How do you relegate an educated, intelligent, feeling, sensitive individual to a lesser status? The key to our decision was based on watching and judging the way Mom behaved and interacted with the world. Mom sometimes got lost on the way to the bathroom in her own apartment. She couldn’t remember how to make tea or coffee. And she did things that endangered herself, like tripping the fuses to the whole house when she used scissors to cut the cord to her bedside light that she had wanted to turn off. It was up to us to keep her safe and determine her schedule. Mom could no longer be left alone. We took a deep breath and started the application for a full-time caregiver to live with her and my father.
And yet I hesitated regarding the decision to include her in the wedding. This wasn’t like a pleasant stroll on Shabbat to our synagogue where everyone knew her and would warmly greet her when we entered. There, if Mom wasn’t feeling well, we could turn around and walk home. If Mom’s irrational anger got the better of her, I could give her all of my attention and get her out of her funk. A wedding, however, involved a long car ride to the location, loud music, simultaneous events in adjacent halls, a big room in which to get lost, tables that all looked the same, unfamiliar faces, photographers with flashes, the need to smilingly greet many people, and other overwhelming situations.