Archive for the ‘Alzheimer’s Disease’ Category

My Mother My Child: A Daughter’s Journey Through Alzheimer’s Disease. Part 2

This is part 2 of a 3-part story

During the first few months we lived together, Mom regularly asked me if it was time to go back to her real home where she lived for 31 years devotedly taking care of another family’s domestic needs. After a while she stopped asking. Six months passed and then a year. I had long since abandoned my school plans and began my career in the tax and accounting field. The hours were long and the work all-consuming. Mom would stay in the apartment most ofthe time, but learned how to walk to the shopping center and back again. During warm weather she would bring her knitting and sit on a bench all day. Mom would often say how happy she was to be with her daughter. We went often to the beach. Mom so loved the ocean. I took her grocery shopping, to the hairdresser, to Philharmonic hall. it was a wonderful year for me, too. Shewas taking care of me, too. She washed my clothes, prepared meals for me, sewed, sang and told stories… the same stories over and over again about how adorable I was as a baby. She told how she would pick me up and hold me for hours wondering if there ever was a more beautiful child. There were aspects of my life I wanted to know about but she couldn’t remember. Those memories were forever swallowed up by her disease.

Life went smoothly along. Mom was fairly independent. I’d go to work and she would go off to the shopping center, watching the people go by, and knitting beautiful, colorful blankets day after day after day. I convinced myself that there had been a mistake in her diagnosis. My mother did not have Alzheimer’s Disease. There was nothing wrong with her. she was simply a lovely, innocent little lady who passed her days in the sunshine while waiting for her daughter to come home. She would call me at the office every day at 2:00. She would ask the receptionist in her singing Swedish accent: “Can I please speak to Viveca (Vee Vee Ca)”. And that’s the way it went every day.

One day she did not call. When I called the house, there was no answer so I ran out of the office and drove to the shopping center. Not finding her, I drove around the neighborhood thinking the worst. Finally I called the police. What seemed like an hour later, a policeman escorted a terrified little mom to the door. He found her walking along the middle of the parkway. She had forgotten her way home. Poor Mom! I held her in my arms while she sobbed and sobbed. I held her a longtime, feeling deeply in my bones that this was just the beginning.

After that episode Mom decided that she didn’t want to go for those walks anymore. It was too cold, and besides, her knitting was becoming too heavy. Of course.

During those first two years life was me and Mom, our cat and my job. I absorbed myself totally in work and when I wasn’t in the office, I was home studying tax law. I tried to arrange for housekeepers to come but Mom wouldn’t let them in. She did not want any strangers in the house. She ws content to sit alone knitting her blankets and watching TV. She continued to call me at 2:00. As the weeks went by, she would often forget to call and eventually she stopped calling at all.

Sometimes I would come home from work and Mom would be quite cross. She’d tell me there were men in the house bothering her. When we talked more about it, I realized that she was referring to characters on TV. It was tax time and a voice would often come on television wagging a finger directly at my mother. It was a public announcment about the earned income credit. As he wagged and pointed he said “The IRS might owe you money!” Mom heard, “I want your money.” She was red-faced and angry yelling at him, shaking her finger up close to the tv face “You will not get one cent of my money. Not one cent!”

There were some mornings when Mom would beg me not to leave. she would be on her hands and knees, grabbing my legs sobbing and pleading. During those episodes I would sit with her until she calmed down. I held her hand and tried to soothe her. I looked into daycare, but they were not accepting disoriented people.

One warm and sunny spring day, mom suddenly decided she would go for walks again. I made the trip with her several times to make sure she knew the way, and she remembered perfectly! I battled with myself as to the wisdom of letting her go. I gave her a special bracelet with our address and my work number and a watch with an alarm to remind her to call me. My worries for her safety were outweighed by her need for this freedom. I let her go.

We lived in New York together for four years. Mom never got lost again. she had rosy, healthy cheeks and made several beautiful blankets, each simpler in pattern than its predecessor. She was holding on. Over time, she knit less and less. Eventually the knitting stopped.

To be continued.

Alzheimer’s Disease Resources

My Mother My Child: A Daughter’s Journey Through Alzheimer’s Disease

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.