Tuesday, January 18, 2011
When I was growing up, I went to bed every night clutching the pink, child-sized rosary I’d been given for First Communion, and prayed for a sibling. I secretly hoped for a girl like my cousin Alison whose sparkle was so bright that it lingered among the dust motes for days after she packed her dolls into their patent leather case and went home. My phantom sister would play jump rope with me in the basement on rainy days, sing along with the Beatles in the car, and let me paint her nails tangerine. But believing it wasn’t a good idea to tell God what to do, I was quick to add that a brother would be fine, too.
Most of all, I yearned for another voice in the dark on the many nights when my parents’ marriage erupted into confusing accusations and teary counter-attacks , when my father’s ancient hurts rocked our five room ranch until I was sure it would explode. As a small child, I envisioned my imaginary sibling holding my hand when I impulsively rushed out to defend my mother--invariably, ratcheting up the conflict. As teenagers, my sister or brother and I would roll our eyes with uncanny synchronicity and turn up the radio. Why don’t they just get a divorce? we’d say.
Only later when I'd grown up and taken up the challenge of my own relationships would I understand that my parents' union was more complex than I understood, that there were no clear villains, and as in most quarrels, both parties played thier roles. By then I understand that our parents hadn’t so much battled each other, as they’d waged a long and valiant war against my father’s demons. And what’s more, they’d won. The arguments would fade to a silent pantomime. Their love--fierce and affectionate till the end--would leave mw in awe.
Despite my endless Hail Marys, I remained an only child. My father, a classic extrovert, had a thousand friends “who were like brothers to him, ” but he was frequently moody and morose at home, especially when my mother was at work. I listened avidly for the sound of a car crunching gravel, signaling that she was home. The wisest and most loving of parents, she was also the sister to whom I could tell everything, and the friend who listened seriously to my music when adolescence blew through our shaky walls like a tornado. . I remember her taking particular exception to Bob Dylan, especially the line in The Times they are a Changin that exhorted parents to “get out of the new world if you can’t lend a hand.” So what does he want us to do--just go die somewhere? she said, standing, hands on hips, in the doorway of my room. But the next day I heard her singing Blowing in the Wind. Now that’s a beautiful song, she said.
In one of our most memorable games from my younger years, she would emerge in an impromptu costume, her voice comically altered, and ask, “Did you think I was your mother?” Sometimes she played a character from my beloved books; she was Jo in Little Women, Nancy Drew’s boyish best friend, George, or Amelia Aerheart. But it was her villains who made me shriek with delight. She played the wicked witch in the Wizard of Oz, or one of Cinderella’s harpy stepsisters; she pulled the covers up to her chin and cackled like the wolf who’d stolen Grandma. I loved the game, but the best part was when she pulled off her disguise, and returned my mother to me: wide smile, lilting voice, the Elizabeth Arden scented hug that made everything all right.
Now that my mother has Alzheimer’s and I have become her caregiver, it seems as if we play a cruel variation of that game every day. I hear her asking, "Did you think I was your mother?" when she curses her aides with words I never thought she knew or tells them that they’re “fired,” when she accuses me of stealing a coat she hasn’t owned in thirty years. She eyes me warily--the thief who hijacked not only a long forgotten items of clothing, but her life--as if to make sure I don’t make off with anything else. She’s supposed to be the mother, and I the child, she grumbles, as she begrudgingly accepts my help to the bathroom, or a meal I prepared. She’s the one who supposed to be in charge of home, car, job, family. What kind of a usurper do I think I am? The answer, of course, is that I am the very worst kind. I am the next generation, and I’m followed closely by another one that is already prepared to succeed me in tending the house that is our mysterious life on earth.
I admit there have been moments when I’ve returned spite for spite, childishness for childishness. (In this disease, there are stages for family members, too.) I have looked at the tiny, broken, confused woman in her wheelchair, and seen nothing but the impostor who replaced my mother in my childhood game. Once she had performed such a convincing act that I’d been genuinely scared by the role she created. When she announced that she was not my mother, I felt my lip quiver. “Well, where is she then?” I asked before I burst into tears. It's an impulse I've felt more than once in the last couple of years.
And then I catch a glimpse of our shared past--a flash of chrome yellow that recalls the old Volkswagen Beetle she drove in my childhood or a photograph of her vamping in a bathing suit, a reference to the sixties' protests. When the first demonstration against the Vietnam war was held in our working class city, she and my Aunt Kally, marched down Main Street with the disaffected college students who’d organized it on their school break. She marched not because she was politically outspoken--she wasn’t-- but because she had been singed when a boy from our neighborhood was killed there. She would never forget--not to this day--the way his mother wailed throughout the wake. For her early and unpopular stand, my mother had been criticized by a supervisor at work, a conservative priest in our parish--and worst of all, my father. But she had refused to be cowed. If they’d heard that mother’s keening, they would understand, she said, as always, giving those who disagreed with her the benefit of the doubt.
That ability to reflect back the best in others is probably what I miss most. Now I struggle to do the same for her as we navigate the fluid terrain of identity. One of the most most appalling aspects of this disease is that it doesn’t matter what you’ve accomplished in your life or how far you’ve evolved. You could achieve sainthood or Zen mastery, and still end your days in a fugue of petty angers and turmoil. In many ways, dementia is more humbling than death.
Strangely, what keeps me going is my memory of the game we played so many years ago. I am solaced by the countless times my mother returned to me, whole and smiling. And having already lost one parent, I know she will this time, too. When my father was alive, I was often unable to see past the mood changes he could not control. But death silenced his furies and returned the funloving, unfailingly generous, affectionate man who had fought them all his life. Now I wonder how I can ever live up to the kindnesses he did for the multitude he embraced as “friends as close as brothers,” or for our family.
I hate my mother’s suffering and fear her loss--almost in equal measure. In the meantime, I’m grateful for her presence in whatever form. I cannot return her former place in the world to her or eradicate her pain and fear, but I do what I can to make small moments pleasurable. I kiss her face and tell her she’s beautiful every morning. (She is.) I stroke her hand and feed her chocolate. I fill our house with the music she loves: Frank Sinatra, Nat King Cole, and yes, sometimes even that beautiful song Blowing in the Wind.