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The saddest day of the year for me is the day I take down the Christmas tree. It’s not so much because I’m a Christmas freak (guilty) as because the tangible objects of Christmases past get put away, wrapped in old, yellowed tissue paper, not to be seen for another year. It’s the missing them that gets me–my own perceived loss that has no rationale other than nostalgia and sentimentality. There are cheap plastic fake gingerbread ornaments from my childhood in the 1970s that find a place on my trees now because they evoke the years of relatives who are long dead, homemade pierogies for Christmas Eve dinner, and a Pong game from Santa. The years of innocence, before death and grief entered my world. One of the hardest ornaments to slide back into its box is the one that contains the last photograph taken of our spaniel mutt Buttons, who died at age 16, when I was 26. Every year I kiss my fingertips, touch the picture with them, and tell her I’ll see her next year. She died 19 years ago. It still hurts to put that ornament away, but knowing I’ll bring it out again gives me genuine joy and sustenance.

I could probably count on my fingers the number of ornaments that don’t remind me of my mother. The ones she bought for me, the ones we bought together. One of our few shared activities over the years was going shopping for Christmas tree ornaments. We’d pick a department store, have lunch, and buy ornaments. We never shared similar tastes in clothes or much anything else. But Christmas trees were our point of agreement—the one subject that didn’t cause tension or stress, although there were many years when I’d hang the ornaments from her begrudgingly and out of spite. She probably bought them begrudgingly and out of spite too. There were many years when we barely spoke at the holidays.  

Earlier this year my mother was diagnosed with Lewy Body dementia, after almost three years of increasingly bizarre and troubling behavior. Because this form of dementia—the second most common form after Alzheimer’s, but the one nobody talks about—causes Parkinson’s-like symptoms of muscle rigidity and tremors, falls are a regular occurrence, and it becomes almost impossible for a patient to remain safely at home. The inability to walk coupled with the delusion that they can still walk makes Lewy Body victims even more likely to injure themselves. We had to put my mother in the dementia ward of an assisted-living facility, or risk having her take down my 80-year-old dad with her.

So when I undressed the tree last night it felt even more like an end to things, almost a funeral, than usual. My husband kept asking if he could help, especially with reaching the high ones. But I knew that if anything broke, it would have to be on me. Otherwise I’d be resentful and unforgiving. So I did it myself. Crying and storing. “Life is . . . Life is terrible,” my dad said to me on the phone yesterday. “You get moments. That’s all you get—just moments.” An engineer by trade and temperament, he wants to fix her. “Maybe if I do this . . . ,” he’ll say. I try to be gentle when I remind him of the MRI images the neurologist showed us, which indicated that a large portion of her brain is simply gone, shrunken around the periphery and clouded with what’s called “white space” from vascular disease in addition to the damage done by Lewy Body. “Dad,” I say, “There’s nothing you can do. She doesn’t even know what you’re talking about.” It sounds cruel, and it feels cruel to say out loud. But this is a cruel disease. When she had breast cancer 26 years ago, I knew she might die, and I was afraid. Now my biggest fear is that she won’t die, that we’ll all live in this limbo indefinitely, that her eyes will always be filled with the terror of nonunderstanding, I’ll never be able to soothe her, and the nightmare of violent outbursts, dazed stupors, phantom conversations, and trips to the hospital will keep slicing into my gut like a sword, every goddamned day.

But still, there are moments. A smile of recognition. A squeeze of the hand. Justifiable pride when she remembers the name of a grandchild. Goethe wrote, “To tremble before anticipated evils is to / bemoan what thou hast never lost.” We’ve lost so much. More losses are to come. Life really is terrible. But the moments . . . I want to wring what I still can out of the moments. Because, despite the years of anger and acrimony and all the things that can’t be unsaid, I miss my mom. There are moments now when she and I are easier and more comfortable with each other than we’ve ever been. Dementia has, in one of those perverse twists that life periodically takes, been a gift. I wish it wasn’t; I wish I could have held my mother’s hand before she lost her mind. But there is no going back, no living in denial, and I can’t just slide my mother into a box and hope to bring her out again next year. Next year is a million moments away.

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