This is part one of a longer story.
I was 28 years old when Alzheimer’s disease sneaked its way into our lives. It was the Fall of 1982 and I was just coming out of a two year post-divorce reclusive period. I was back in school, dating, and starting a new job. I felt free from the burden of my heart ache and guilt. I now could do anything I wanted and spent lots of my time in bookstores and travel agencies seeking information about the world, preparing to explore it fully. I sat this one Thursday afternoon in my studio apartment, wrapped in a soft yellow shawl sipping tea and sorting through brochures about Tahiti, Bali and New Zealand. These were the lands of my dreams- exotic, beautiful and far away.
The telephone interrupted my dreaming. It was My mother’s doctor with a diagnosis for me. Alzheimer’s Disease. He explained something about plaques and tangles in the brain and described the gradual deterioration of memory. I waited for him to mention a pill or therapy that would cure my mother’s problem. I asked him. The doctor lowered his voice in reply: “there is no known cure.” He explained that Alzheimer’s is a progressive, irreversible brain disorder that usually affects persons over age 60. (My mother was 65), but some individuals in their 40s and 50s are afflicted. “I’m very sorry.” He invited me to enroll in a new research program for people like my mom. I made those arrangements with him and hung up.
I sat in my room shivering in the dusk while the full meaning of what I learned sank in. My mother has an irreversible brain disorder which will gradually take her away from me, her only child. How will I take care of her, pay the bills, go to school? What about my new life and dating again and finding a husband? Who will want me? Where will we live? I felt certain in that moment that my life was over.
During that next year life just kind of went on. Mom continued working as a live-in housekeeper. I went to school and work. I put travel ideas on hold, though. I would receive regular phone calls from mom’s employers who shared details of her forgetfulness: sugar in the fridge, brooms in the clothes closet, chicken bones in the laundry hamper. I felt impatient with them. Couldn’t they pardon a few inconveniences? After all my mother had served them well for over thirty years. What was wrong with these people?
We participated in the Alzheimer’s research program. We met with various doctors, social workers, psychologists, students and other interested parties. Mom was asked to answer again and again such questions as who is the President of the United States? do you know what day it is? What year is this? Please count backwards from ten. Mom would laugh as she struggled with the answers. Why, Kennedy was the President. Everyone knows that! She looked at me for help and I squeezed her hand encouraging her to answer the best she could. Secretly I found the whole thing annoying. What difference did it make what day it was? I explained to these people that my mother lived a simple life. She was kind and thoughtful. She loved all living things, and she never ever forgot to feed the birds. She was self-reliant and very practical. There wasn’t anything she couldn’t mend with simple tools or needle and thread. She sang beautiful soprano and read scores of books by Dale Carnegie, Howard Vernon, and Norman Vincent Peale. She believed that if you only filled your mind with pure and simple thoughts, your life would be blessed with happiness and good health. Wasn’t this important? They smiled politely and nodded. Some would place a reassuring pat on my arm. I can still remember the click of ball point pens recording whatever they were finding notable and continuing to ask their relentlessly dumb questions.
After a year of this, the whole thing seemed too inane to continue. These visits were not helping my mother and they were a great hassle for me. Meanwhile the stories from Mom’s employers continued. She was now mixing the darks with the whites, throwing $100 silk panties in the hot cycle and flirting with the repairmen. She would have to go.
I found us an apartment and gave Mom the master bedroom with private bath. She hated it and was angry with me for making her live there. She wanted to work and be useful. She wanted her old room at the house she lived in for 31 years. If I had to pick the most agonizing period of my mother’s illness, this was it. She had enough understanding to know something terrible was happening to her yet I could not find the words to ease her suffering.
~To be continued.