When you love someone with dementia, it feels like your life is eroding piece by piece. I don’t mean the daily grind of caring for them, the slip and slide beneath your feet as the ground you thought was solid turns to slurry. I’m talking about the past you share with that person, all the little interactions through the years that make up your relationship with them. As they begin to forget those moments (a precursor to forgetting you), it’s hard not to feel that your own history is vanishing into that grey fog.
I first noticed this phenomena about twenty years ago. I was newly divorced and had traveled from where I lived in Pittsburgh to my parents’ home in upstate New York. I was a woman in need to comfort and the feel of the familiar. I needed to lick my wounds and get on with life. I was standing in the kitchen talking with my folks when the topic of Christmas cookies came up. One of the great memories of my life is making Christmas cookies with my mom. She would mix and roll out and cut the dough into shapes and it was my task to decorate the cookies before they went into the oven. I took the job very seriously and worked hard on each cookie, making it just so. Didn’t matter to me that in a few days there would be nothing left but crumbs. I loved making those little pieces of art with egg-white “paste” and candies and (my favorite) egg-yolk “paints” in blue, red, green, and yellow that I applied with little brushes.
I suggested to my Mom that we do up a batch of butter cookies like in the old days. She was up for it until I mentioned the egg paints. Her expression went blank. She had no idea what I was talking about. I explained (over and over) but she had no memory of those paints. No memory, in fact, of ever having made those cookies with me. A major portion of my childhood, erased just like that. Snap! (Okay, so, yes, I realize that those memories aren’t really gone if I can remember them, but do you see what I mean?)
Since my mom came to live with us, I try to stimulate her brain with things I know she’s enjoyed in the past. Sometimes it works, others times not. Tonight was a not. We sat down to watch the original “How the Grinch Stole Christmas.” This has long been a favorite of my mom’s, ever since it first was televised in 1966. When it was over, I turned to her and said, “What did you think?” She said, “I’ve never seen it before.” I felt my heart squeeze in a funny little way. (Not funny ha-ha.) “Did you like it?” I asked. She shrugged. “Eh, it was okay.”
So much of what I’m experiencing emotionally is my own fault. I know she’ll never be the same again, never be the mom I knew, but I keep hoping to retain (at least for a time) bits of her. And it just isn’t happening. And, of course, it can’t happen. It won’t. Logically I know that. Still…I want her to be happy. I want to bring some joy into her life while she can still experience joy, but since she doesn’t experience joy in the same way anymore (at least I don’t believe she does), I’m not sure what to do. Christmas used to be a time she loved (despite my father’s decidedly Scrooge-like ways). She waited all year to watch “Miracle on 34th Street,” and “Grinch” and the Alastair Sim version of “Scrooge.” Now they mean nothing to her. This year she seemed entertained by “Miracle” (the original), but had no recall of ever having seen it before. Likewise “Scrooge” (although she had a clear memory that it wasn’t the version she’d seen as a child — that was the Reginald Owen version, never her favorite…until now).
I think her decline is gaining speed. I should be grateful for that on some level I suppose, but this is the hardest damn thing to watch, like standing at a distance while someone you love is consumed (in slow motion) by an avalanche. You are powerless to stop it, powerless to make a damn bit of difference, to slay the monster. You can only stand there and watch.
And it hurts.