Waiting was wrong. I didn’t like waiting. I’m witnessing. Mom is doing and I’m witnessing. Waiting implies an investment in the outcome. And I don’t want an investment in the outcome. It’s not like this has a surprise ending. And I won’t like it when it comes.
So I’m not going to wait, I’m going to witness. Mom hasn’t eaten in three days. She’s heavily medicated so that if there is pain she won’t feel it. She’s been sleeping for two days. Kam says that the last sense to go is hearing, so we are spending time in Mom’s room. We’re talking and laughing and crying. Today we bought a puzzle book. Mom has always been good at words, so I’m asking for her help with the word puzzles. She got one wrong. The word wasn’t snore, it was norse.
Yesterday Nancy and I were talking in Mom’s room. She has told her kids that when she gets alzheimer’s she wants them to put her in a nursing home and forget about her. Pretend she’s already died. Nancy teaches alzheimer’s patients every day. She sees what happens. She understands the pain and the suffering. She understands the loss. She understands the ugliness. She says she knows she’ll be the one spreading shit all over the walls.
She’s wrong I think. There’s also joy and laughter, just like anywhere else. There are the wonderful life stories Anne tells during moments of lucidity. The hugs and kisses that Jacquie is so free with, when she isn’t pissed. The compliments that Lorraine doles out like candy along with her advice about how to walk sexy. But that’s not why I visit. I visit because I need to be here. I want to spend time in Mom’s world because it is also mine. I may not have much to offer her now, but she still has so much that I need. Even if she’s just holding my hand and sleeping.
It’s now seven years since Mom was diagnosed with alzheimer’s. I don’t remember all of the steps it took to get here, but I do know that I could not have taken them alone. Four years ago I said it better than I can say it now. Now the pain is too real, the loss is too close.
“Flibber my jabber?” Mom asked.
“Thank you, honey”, she said. Her face relaxed into the smile that has always come readily to Mom. She squeezed my hand and settled back.
Three years ago Mom was diagnosed with Alzheimer’s. But I had been watching her change over several prior years. She got more frequently lost, forgot her thoughts. She stopped reading. Still, the diagnosis generated fear and rage in me. I felt shocked and let down, cheated of some unnamed birthright. Unchecked emotions bashed each other around, until I finally realized that Mom and I only have right now to be together. Now is my time to learn to live both with and without my mother.
Alzheimer’s has not eliminated the powerful woman that Mom has always been. Her guidance still shows me how to maneuver the life she gave me. Even as an adult I know that the path I am traveling seeks to follow the footprints my mother leaves. How needful I am still of her direction, of her love, of her presence. Where parents are usually the ones stricken when it is time to release a child, for me it has been hardest to release my mother from my grasp.
Since her diagnosis, Mom has become equally more and less of her self. She is altered now, a pastel version of the vibrant woman she once was. I still see the mother that I love and need. And I’ve come to know that she needs me, too, in ways that I didn’t understand before Alzheimer’s. I see Mom nearly every day. Sometimes I watch her sleep, sometimes I just hold her hand, and much of the time we talk.
Alzheimer’s has stolen Mom’s ability to use language. I will never again know what we are talking about. Now I read Mom’s face. Maintaining the connection that we’ve always had is what guides us. The bond we share transcends language, there is no longer a need to understand the words, and there is no need to understand the meaning. I am happy just to be with her, following her lead, talking in nonsensical terms about unconnected thoughts. Our relationship is, in many ways, unchanged. She requests, demands, or smiles an un-shared joke, and I respond fittingly. Her need for me fulfills my need for her.
Alzheimer’s is carving a long and meandering path to loss. Mom and I are strolling together. The way is not clear, and there is no map. It is a path I am getting to know, and learning to appreciate for what it is. It turns and drops off unexpectedly sometimes, then wanders slowly; taking the time it needs to reach its final end. Each step is its own treasure, however painful. I am still not at all comfortable with the destination, but I am learning to accept it as truth. One day I will walk without my mother. And as she fades into her twilight, she is showing me that I can.
We’re at the end of the path and I think I’m not ready. But I trust that Mom will know when I am.