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In my memories of my mother, I always seem to be playing the role of the audience, sitting in the front-row seats. Every time I think of her now, my heart sits right down in the very same place, paying the same sort of attention it always has.
One day when I was a child, my mother sat at her makeup table wearing my father's plaid bathrobe, her lovely face copied three times in the triptych mirror. She picked up her heavy hairbrush as she watched me watch her images. Steam from the tub was floating toward her out of the bathroom, carrying the perfume of the bath she had just taken, and I was sitting on the bed, my legs not yet long enough for my feet to touch the floor. It's important to the story of my mother to picture her like this there, in that funny, dreamy way. It puts her in context, I think.
"You know, darling," she said, caressing her hair more thanbrushing it, "the world of women is divided into two categories."
The steam was coming to her, ghosting right past me through the room."Those who believe Rhett came back," she said, passing the brush through her auburn hair, "and those who don't care."
My mother's name was Allene. She is a descendent of the Revolutionary War hero Ethan Allen, and so her parents gave her their own form of the family name. As a child she was a tomboy. In college, she studied journalism. She graduated and became the society editor of the Long Island Star Journal, a New York daily newspaper that folded in the 1950s.
She became a wife and mother, a Girl Scout leader, and a visiting nurse volunteer, and after my sister and I were raised, she went back to school and got a master's degree in education and began teaching at aMontessori preschool on the Lower East Side of Manhattan. That puts her in context, too: lovely, but gritty.
Then, sometime in the 1970s, my mother's mind went to battle with something and lost. I used to say that she was losing her mind in handfuls. It was the best description I could think of for what was happening.
She became forgetful, angry, hostile, and incompetent. What began as a daily search for her keys soon became a daily rage in which she would dump the contents of her purse in the middle of the living room floor and shriek that she was losing her mind. She hallucinated wildly. She became violent and had to be sedated. She was fifty-one years old. When we finally got a diagnosis, the doctor began by saying, "Your mother is not going to die." I thought the words were being offered as comfort and reassurance. Instead, they were preparing us for a diagnosis of long-term care. It was Alzheimer's disease, and it would change all of our lives forever.
By the time she was fifty-six years old, Allene had to be placed in a nursing home. We had run out of options. My father was dead, and my sister and I were in our twenties, working full-time and supporting Allene's twenty-four-hour-a-day, seven-day-a week home care.
At that point there was very little that seemed to interest her, very little that made her respond. She could no longer speak. She didn't recognize me or my sister. And while we still did things together, she seemed uninterested in anything but watching television and smoking.
Except on Sundays, when we went to church. I have to say right here that we did not go to church out of faith. I had very little faith in anything at that point. We were six years into her illness and what faith I had retained had been mangled by the relentlessness of her disease. We went to church because it was the only place where, for one precious hour each week, she was calm. I seem to recall thinking about converting to Catholicism because I'd heard that the masses were longer.
The church we attended was the Community Church of Douglaston, the church where my mother had been baptized, and where my sister and I had been baptized. It's one of the first buildings you see when you enter to the pretty town in which we were raised. We would sit there each Sunday, and in the quiet I would breathe deeply and rest. People were very nice to us there. It had all the comfort of home.
On the last day before she went into a nursing home, I took my mother to church as usual. She had no idea that the next day she was being moved out of the town she loved. I was bereft, feeling guilty and grief stricken, angry and exhausted and alone.
I remember leaning my head against the side of the pew and weeping. And then I noticed that my mother was singing all the hymns. Probably she had done this every Sunday but I had never really noticed. And then she said all the words of the Lord's Prayer. This from a woman who could not speak my name.
Years later, after writing about my mother in a book and in several magazine articles, and working as an advocate for people with Alzheimer's disease, I got involved with The Eddy, now a part of Northeast Health, which is an adult-care facility in Troy, New York. I was called to a meeting to create a plan for senior services in the area. A man who was a minister said, "I have always been interested in pursuing the spiritual life of Alzheimer's patients." The memory of my mother in church her prayers and her ability to sing hymns flooded my mind. I started to weep.
I realized that without that one hour each week with my mother, I might have gone mad myself. No one can say what that one hour did for my mother, but I believe it was a real blessing. Now that she was gone, other patients and other caregivers needed that blessing, too.
Without meaning to do so, we deny patients the right to worship at the moment they and their family members need it most. When someone cannot sit still, or be quiet, or remain continent, we discourage their presence in our houses of worship. We may not mean to, but we do because we don't want someone disrupting the ceremony and spiritual solitude of worship.
So that autumn in Troy, we planned a service around the time and theme of the harvest. We celebrated with a rabbi, an Episcopal priest, and a Presbyterian minister, and intermingled the themes of Sukkoth from the Jewish tradition with Christianity's harvest hymns and prayers. We invited patients and their caregivers. I wrote a prayer for the caregivers and one for the patients. We convinced a priest to keep his sermon under five minutes, used a lot of music, and encouraged walking around throughout the service.
When it came time for the offertory, we circulated baskets of apples; instead of collecting money, we hoped to give something to the patients and their families. The whole idea of the service was to be thankful for what we had, as opposed to focusing on what we had lost to the illness.
From patient to patient, I carried a huge African basket filled with apples. One very ill woman was furled in a wheelchair, her head slumped on her chest, her hands tightened into the gnarls we associate with the very last days of life. Her caregiver shook her head, indicating that the woman would not be able to hear or understand me, but I wanted the old woman to have an apple. I got down on my knees and tried to make eye contact. It was impossible. I tried to open one of her hands, but it was like a knot.At that moment the offertory hymn began. The opening bars of "How Great Thou Art" came onto the organ, and my husband, an accomplished baritone, softly began singing the hymn.
The woman uncurled. She straightened up in her wheel-chair. At the top of her lungs, she sang every word, with the same clarity my mother had.
The caregiver gasped. I literally staggered back, then watched as the joy and triumph of the lost self of this woman revealed itself to us. She sang from her heart. As the song ended, she curled back into her chair.
We had reached her.
She had reached us, too, as together we saw for ourselves what we knew to be true: that there, amid what had seemed like darkness, was light we had almost overlooked. The same glimmer I had seen in my mother years before.
Emily Dickinson says, "Hope is the thing with feathers." That being the case and if Emily says it's so, it is then faith is a thing that can surely fly.
Marion Roach Smith
Petersburgh, New York
Copyright ) 1999 by Jamie C. Miller, Laura Lewis, and Jennifer Basye Sander