My mom Elaine lives in Wisconsin. I live in Massachusetts. Alzheimer’s lives in between.
At first, it was important to me that Mom’s memory of our mother-daughter relationship stay intact. I concerned myself with not calling enough or at the right time, not asking the right questions or feeding the proper information — not doing what was needed to make sure she didn’t forget she was my mom and I was her daughter.
After every phone call, I would judge the conversation. Did we make a connection? Did we build a new memory or secure an old one? How long did we talk? Did she know she was my mom and I was her daughter?
Through all of this worry, I developed three insights that made future calls easier:
1. Change the way you ask questions. I no longer asked, “What are you doing today? What is the weather?” or “Do you remember when…?” It became, “Do you think you will go (sailing, shopping, out to eat) today? What do you see when you look outside? When you were teaching you told me about…” We then moved on to, “Dad said you two are driving to the store; it is sunny here, what about there? Thanks for always listening to me, Mom.” Those conversations eventually changed to, “Wow you’re in the car. That’s fantastic. Thanks for always listening.”
Her questions changed too. No longer, “How are the girls? Matt? Teaching?” She’d ask, “How is the family? Where do you live? And then, “Everyone’s good though?”
2. Accept the conversation as it is. Long, short, interactive, monologuish. Be comfortable with and enjoy answering and asking the same questions three or four times in a row. Sometimes Mom and I would chat and then she would pass the phone to my dad. Once he had the phone back he would say, “Kathy is on the phone, do you want to talk to her?” “Of course,” she would say with great enthusiasm, and we would start all over again.
3. Meet in the moment. Our conversations could no longer be about remembering who we were to each other. I no longer try to remind my mother that I’m her daughter. Now our conversations are about the two of us meeting in the moment as friends and sharing who we are right then and there. Conversing with someone with Alzheimer’s is not about making sure they don’t forget the past, but making sure that things are the best as they can be in the present.
The last trip my mother took was to watch her granddaughter perform in a play in In Meadville, Pa. during a spring weekend in 2014. Mom attended, applauded and praised two separate viewings. She had us in smiles with her newly minted cut-to-the-truth comments and enjoyed dinner and a glass of wine on our nights out. One day she also got dressed and ready for the day, left the hotel room, unnoticed, and sat down to wait in the lobby. At 3 a.m. Alzheimer’s had enough of my mom at that point that it was no longer safe for her to stay anywhere not designed with her condition in mind. Three years later, I again spent a spring day in Meadville, this time for my daughter’s graduation. Without my mother.
My mom Elaine and I have always loved, shared and laughed together. I’ve learned more than imaginable from her, and am immensely blessed and honored to be her daughter. My friend Elaine and I love and share and laugh together. I continue to learn from her and feel immensely blessed and honored to be her friend.
About the Author
Kathryn Lyon is the oldest daughter of Martin (Marty) and Elaine Schreiber. Elaine is in her 12th year living with Alzheimer’s. A former Governor of Wisconsin, Marty Schreiber penned the book entitled My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver that shares what he learned as a caregiver, along with notes Elaine wrote as her disease progressed.