The Last Dance
Many believe that a definitive diagnosis of Alzheimer's cannot be confirmed until autopsy, a grim catch-22 for patients and their families. Research reveals, however, that experienced physicians are accurate 90% of the time with a diagnosis based on the patient's personal history, a medical exam, and a process of ruling out other known causes of memory loss and declining cognitive function.
Lilla and I are fascinated by the presentation. Even as we dedicate ourselves to "mental and physical exercise and a satisfying social network," we refuse to live in a state of panic or denial. We will live in my mother's world, appreciating the moment, and put faith in future research. Patience is a virtue. Peace of mind will be our reward.
Monday night, my sister Debbie calls to report on a recent visit she made to my parents. Debbie says she's learning to give Momma time to respond in a conversation. "I bit my tongue to let her talk," Debbie says with a laugh. We realize that Momma knows what she wants to say most of the time, but we only have a 50/50 chance of being right if we fill in the words for her. If we're wrong, she gets more confused.
Thursday night, my parents come to our house for dinner with my nephew Erik, who is visiting from the West. Afterwards, as Brad and my mother finish the dishes, my father tells Erik and me how she is doing this week. "Susie hardly reads at all anymore," he says, "but yesterday she was reading ahead in one of the Alzheimer's books. She came to a section about the final stage, when total memory loss and confusion sets in. Susie brought it to me and pointed out the paragraph about the final stage. She wanted me to read it, but she was still smiling, almost as though she didn't really comprehend how bad it could be at the end." My father's eyes fill with tears. "I told her, 'We'll get through it together, Susie, you and me.'" I am amazed at how far my father has come. He is a new man, totally open and honest with his feelings. We are blessed to have found one another this way.
The next day is our last taping. My mother is having a good day. Her thoughts are coherent, even though the words to express them are often slow to come.
I can't get over what's happening in Afghanistan, how the people are coming back out in the streets. The women have gone back to work and to their lives. I think that is the essence of my life. I went to the legislature at age 40 and I sat down next to Betty Green. I didn't realize until that point, having grown up at Dartmouth and married Malcolm, who was a Rhodes Scholar, that women were as bright as men. That was the most incredible experience of my life.
"What do you think about our time together this fall, taping the story of your life?" I ask.
I think that doing this with you is the cause of me being positive, instead of negative, about Alzheimer's. I look back on my life and I just feel wonderful.
"Do you think talking about your feelings has helped you cope with Alzheimer's?" I wonder.
Yes, I do. I can't talk any more about the present. [She pauses.] Malcolm and I are going to go to Egypt, but I can't remember where we're going. I know I will enjoy it, wherever it is! [Another pause.] So that's it.
"Are you worried about whether it's safe, with what's going on in the world?" I ask.
No, because if it's not safe, I'll die early. I am into reading about Alzheimer's. It discourages me so about the later stages, incontinence and that sort of thing—not tasting, not remembering. You are in bed the last year or so. I get depressed by that.
"The only saving grace to this disease is that when you get to that stage, you won't
realize it," I say softly. "We will be there to make you comfortable, to keep you happy." I am trying to reassure both my mother and myself about what the future holds. "But if you go out in a hijacking in Egypt, we'll wish you well," I add. "At least you and Daddy will be together!" My mother laughs, then continues talking about her life now.
Malcolm is so unusual about the illness. He is really wonderful. . . . He is very kind now. He's gone back to where he was when he married me because I was a young girl.
"He's read the Alzheimer's books, too," I say. "Now he is much more open talking about his feelings. Daddy is so loyal to you and fond of you. He loves you very much, don't you think?" I ask expectantly. My mother's eyes are twinkling as she responds.
He really does love me . . . [She pauses, smiling as she searches for words.] I love him very much, too. I feel that he is kinder now. It's nice . . . it's very nice. . . . In fact, it's excellent!
I give my mother a hug and lay my head on her shoulder. "I love you, Momma," I say.
Week by week, I have felt my mother's lessons sink into my life. I am finding joy in simple pleasures. I am learning to let the memory of misery fade first. I am appreciating nature. I am reaching out to family and friends, opening my heart and soul. I am learning to live by not being afraid to die.
Our Fridays are at an end. Week by week, I have felt my mother's lessons sink into my life. I am living in the moment and finding joy in simple pleasures. I am learning to let the memory of misery fade first. I am appreciating nature. I am reaching out to family and friends, opening my heart and soul, as we laugh together over joy and cry together over sorrow. I am learning to live by not being afraid to die.
I have also come to realize that my life is my own to live. Everyone has different memories of our family. Our perception becomes our own reality. No matter what I accomplish, I have no regrets about the decisions that have framed my life.