The Last Dance
Others in my family have made different choices. In the end, that's what life is all about.
I get together again with Lucia, who recently visited her mother. Lucia says our conversations have helped her appreciate each glimmer of recognition and hope. "One of the hardest parts of coping with Alzheimer's," she says, "is that you never know when to grieve."
Half of the grief about Alzheimer's is letting go. Learning to let go may be the last lesson I learn from my mother.
In the months following our taping sessions, my mother continues to slip away from us. Grief comes in waves, at the sight of a flock of geese flying south or a child skating on the ice. Memories fill my mind. Loss fills my heart. We are living the last dance, feeling the anticipation that the party will end, yet hoping that the feeling of love in our hearts will last forever.
Suddenly three winters have come and gone since my "Fridays with Susie." The music has slowed but not yet stopped. My mother reads her book cover to cover every day. Then she begins at the beginning again. In this way, she holds onto her identity, even as the person within her slips away.
We are savoring our last dance together, each of us coming to terms with Alzheimer's disease in our own way. We live in the present with my mother, entering her time zone whenever we visit. Every glimmer of recognition is a gift from the past. Every moment together is a memory for the future. We did not choose our mother's slow demise, but we take advantage of the fact that we have time to say good-bye, over and over again.
My father devotes his life to caring for my mother, 24 hours a day, seven days a week, day in and day out. They settle into a comfortable routine. The morning starts with the Today show while Momma has breakfast in bed—a banana and a muffin
with a cup of coffee. Then an aide from the Visiting Nurse Association comes to bathe my mother and help with the laundry and cleaning, while my father goes to the office. He appreciates the company of his colleagues and the routine of his work now more than ever before. At noon, my father comes home and makes my mother lunch—a bowl of soup, with yogurt for dessert. After lunch, they take a nap and then a drive, to enjoy the sights of scenic New Hampshire. Occasionally, they go out to dinner but most nights my father serves dinner at home; he becomes a fan of Boston Market's healthy takeout meals. Every evening they watch the PBS NewsHour and often a movie before settling in for the night. As time passes, my father gets up in the night several times to help my mother to the bathroom. Everyone, especially my mother, marvels at his patience and kindness.
Friends and family visit for lunch or tea. As the months pass, my mother speaks fewer and fewer words but always manages to get out her favorite line: "I have Alzheimer's. I can't speak, but I listen to your every word."
Soon motor changes become evident. The fingers on her right hand began to
curl up. The hand that changed 10,000 diapers, cooked for decades, wrote hundreds of speeches, is ready to rest. Then the physical disability spreads up her arm to her shoulder. My father has to remind her to start with the right sleeve first as he helps her put on a shirt or sweater or coat. Soon she loses muscle control in her right leg as well.
"I've learned to start dressing a half hour before we go out," he reports, a habit I remember from putting toddlers in snowsuits. The analogy comparing Alzheimer's disease to raising a child in