My mother has dementia.
There. I’ve said it, and that makes it real. Oh, I’ve known about it. For the past several years, she’s been slipping away from us little by little. I knew on that Thanksgiving weekend when she and my father came to visit and I found her standing in front of the dresser in the room they occupied. She was crying because she could not remember how to get her medication in the little pill containers with the days of the week on them. My heart sank to my toes then, because I knew what she was facing. But I had a hard time facing it myself.
She was all right again after a few minutes. I had her come downstairs where there was brighter light because truth be told, I couldn’t differentiate one pill from another without it myself. We filled the pill container and I shrugged it off. It was an aberration, a fluke, and she would be fine. Until I saw my father’s face once she left the room and heard his words.
“She been having episodes like this,” he said. “She gets frustrated because she can’t do something, and she cries.”
My mother who never got frustrated. Who raised three children, ran a household, worked a job, balanced the checkbook and fed and clothed us all on a carpenter’s pay, and then a truck driver’s pay. Who stripped wallpaper and painted the bedrooms. Who ran my Girl Scout troop and came to watch our school musicals and glee club and choir competitions. My mother who never cried, and here was my father, telling me that she was crying often. And still I didn’t want to believe it. Told myself it was his imagination, or he was being mean to her and making her cry. I would rather have believed that than what was really happening to her.
It got bad then, when I started to believe. When she went to the doctor and the doctor hedged and wouldn’t come right out and say it but tried to prepare us for what was going to happen. I cried a lot myself after that. She was my mother. This could never happen to her. But it did, and it is. This fact has now been pounded into my head. And my heart.
I’ve been with her and my father now for about ten days. In a couple more days, I go home again, wondering how they will manage without someone here full time. She is frail, my strong and vibrant role model. Frail with the passage of time and with the ravages of this disease that makes her forget how to cook, forget even that she needs to eat.
But her spirit is indomitable. She fights to remember how to live as she slowly fades away. Her body recalls the movements of house-cleaning and making meals for her family. Of how it feels to pull weeds from a garden or plant the flowers that she loves. Her eyes still delight in the colors of a bouquet bought from Costco, and she enjoys them anew each time she spots them, because she has forgotten that they were even there. But she can no longer remember that the dryer is for clothing that has already been washed, or how to work the settings on the washer.
We hesitate to let her near an iron or the toaster oven or the coffee pot for fear that she will burn herself. She can no longer take a walk by herself, something she loved to do and would still do, except she can’t remember the way home. So we don’t let her out alone, and we check on her constantly to see what she’s doing and where she’s gone. We treat her like a child, and this pisses her off more than anything she can no longer do for herself. Beneath this insidious disease, the woman still exists, something we are all guilty of forgetting.
We sat at breakfast two mornings ago. It was a rare lucid time when she knew what was happening to her and tried to describe it. She said it was like she was swimming through a fog, wandering lost. My father clasped her hand and said, “Don’t wander away. Come back to me.” He mourns for her the way we all do. Because the woman we knew is more often than not gone and will not be coming back to stay. We catch glimpses of her now and again, when someone mentions something from her distant past. Those things she can still remember, and so remembers us because we were there for the better part of her life. I dread the day when she looks at me blankly and wonders who I am. The living hell my father is going through I can’t even begin to contemplate.
My mother’s brother and his wife have been angels during this time. I don’t know what we would have done without them. They have put their lives on hold for her and my father, but we have all made the decision that it’s time for something more. So we have found them a place to live. A pleasant place where they will both get the help they need to handle some of the things they no longer can.
I want to take them home with me. I want to do for them the way they did for me all those years when I was growing up, and after that when I was already grown but still needed them. I want to, but I can’t. They will no longer move back to the north country where the winters are so harsh and the summers never long enough. They will stay now in the southwest, where there is heat and light. I will go home to the cold and fresh snow, to my job and my life, and pray that leaving them here is the right decision.
Because it feels wrong. Like I’m abandoning them to strangers, leaving them in the custody of people who don’t know them like I do and who surely can’t care for them nearly as well as I could. My mind tells me that it has to be this way, but my heart is whispering a different story. I have never wanted a story to end another way more than I wish this one could.