Having a mom with dementia has been a journey of slow grief, but also with pockets of unexpected richness and joy. There are landmarks, like when she stopped driving, stopped cooking, and a sad one – stopped reading. The dementia milestone I’ve long feared is the day when my mom wouldn’t recognize me anymore. Thinking about that probability has always brought tears and a panicky feeling in my chest. What will I do when my mom doesn’t know me anymore?
I’ve experienced a version of this event before. My paternal grandmother had Alzheimer’s. I remember my mom making photo flashcards for Grandma Elaine and laminating them with the person’s name below each photo. The idea was that any visitor or caregiver at the nursing home could either quiz her or just spark up conversation about loved ones. Understandably, she didn’t like to be quizzed on people or events, so the cards became just friendly faces near her bedside. When she didn’t know me anymore, Grandma Elaine called me “that doll”. I accepted the new nickname as a term of endearment and didn’t push her to remember that I was related. One time, my dad also visited while I was at Grandma’s nursing home. He stood in the doorway and said hello. In an exaggerated whisper, Grandma Elaine said with suspicion in her voice, “That man comes around here an awful lot!” My dad and I laughed. I said, “Well, I think it’s because he’s your son! You gave birth to him!” She broke into giggles, “Oh! Okay!”
This past weekend, for Memorial Day, my husband, kids, and I drove five hours to my parents’ cabin on the beach. We had a great time with extended family. My mom needed a reminder of my son’s name, but otherwise seemed pretty clear-minded. The tide was way out, so I dragged some chairs and beach toys down the hill so my mom and I could sit while the kids played in the sand. My sons and husband explored the rocks, finding little live crabs to hold and show us. I brought my book, thinking I would read for a while. I started to read quietly on my own, then thought of what a voracious reader my mom used to be. Sometimes, she would read a book in one day. Dementia has made reading difficult and it’s been a long time since she’s successfully enjoyed a book. So, I decided to be her audio book. I told her it was an author’s story of making bread and how God taught her things in the process. Then I read the pages out loud so she could join in. It was a really sweet moment, being outside, watching the waves, having the kids shriek with crabs tickling their little hands, and enjoying a book with my mom. She commented on parts that connected with her experience, like growing up Catholic and the process of receiving Eucharist. We usually don’t know what to talk about because she remembers so little of her present life.
I always thought the moment of my mom not knowing me would be this solid turning point. Like, she’d have no idea who I was and it would be very traumatizing. That’s not what happened. We were reading on the beach and she pointed to my two year old daughter, out in front of us, squatting on the tide flats, collecting creatures in a bucket.
“Who does she belong to?,” my mom asked, “Who’s raising that little girl?”
“I am,” I said, “That’s my daughter.”
My mom smiled at me and said, “Well, that’s nice. You must be doing a good job.”
“Well, I grew up with a good mother, so that helps,” I said.
“Oh? You did? That’s good. That little girl says such clever things. My kids never said all those clever things.”
I laughed and gently smacked her arm, “Hey! I’m one of your kids!”
She laughed too, “Oh! Well, I certainly don’t remember it being as clever as what she says!”
We continued having a nice time on the beach. Later, my mom knew me as her daughter and recalled some stories. It wasn’t a sharp turning point. It was a moment, and the moment was lighthearted, not a stab of grief. I wasn’t expecting it to be gentle like that.
I recognize that there’s more to come; probably harder transitions, including stopping knowing me altogether and other events that may be much, much more challenging. I don’t want to pre-grieve anymore though. I was wrong about how this one turned out, and I feel like I wasted grief in imagining the event well before it occurred. My mom is not the same, but she is with me. I’ll keep praying for God’s help and healing, I’ll keep reaching out for relationship with my parents, I’ll keep trying to adjust and receive her as she is now. Whether she knows me or not, I plan to come around an awful lot.
