Oak Communications • Biography
• Personal Statement
Mom was an English teacher. She loved to read, write, teach others how to write, and coach her students through life's challenges. Her bookshelves overflowed. She wrote notes in the margins of her books, underlined passages, crossed out the word "but" and replaced it with "and." She wrote a book called "Learning Like A Fool" and self-published it before that became a relatively easy thing to do.
I suppose these facts made it all the harder to watch mom's mind decline due to Alzheimer's disease. The first indication that something was not right was when my husband and I visited her in June 2000. I was in her bedroom and saw a stack of mail on the floor. Not sure I should be poking around in her affairs, I nevertheless did decide to look in the stack. There I found several, apparently unpaid bills. I asked her about it. She said something that I didn't quite understand about a woman at her bank with whom we later went to visit. This kind woman at the bank told me that Mom had been bringing in her bills, and she would help Mom to write the checks out. That was the first of many surprises and began a journey many families face.
In the beginning, I didn't understand what was going on. I would find myself getting irritated or even angry when Mom didn't remember things. I would say: "don't you remember we discussed this?" Or, "Mom, use your words!" While deep down I knew this was not helping the situation, I couldn't seem to stop myself in the first several months of caring for her. I think I hadn't quite gotten my own mind and emotions around the idea that my Mom was changing. Over time, I realized that she could not help it if she couldn't remember events, names or what we had discussed, and then I felt guilty for being impatient.
We would sit at the dinner table and Mom might ask a question, not realizing that she had asked that same question six times already. She also lost nouns. We would play a guessing game to determine the word that she couldn't seem to pull from her memory. Sometimes she would say something and then stop; yet I would know exactly what she was talking about because of our shared history. My husband, Mark, would look at me and wonder, "how in the world did you know what she was saying?" We often felt like we were in a surreal movie. Sometimes we would laugh when we would find the carrots in the freezer; other times we would cry realizing that it could or would get worse.
When a neurologist told us that she most likely had Alzheimer's disease, Mom had no reaction. I believe at that point in the progression of the disease, she no longer remembered what the word Alzheimer's meant and what significance it might have to her life. I did know what the word meant and while the diagnosis didn't surprise me, hearing the word spoken shook me up. I tried not to cry. In fact tears were at the surface of my being for many years.
We had fun times too. We took her to hear lots of music, which we all enjoyed. Sometimes she would surprise us with her lucidity. We went to a performance of the Urban Bush Women, a dance performance ensemble. During the drive home she asked me the name of the group again. When I told her, she said, "those words don't go together." I was blown away by her observation. The English teacher was still a part of her being. She presented me with the opportunity to be present with her and to not make assumptions of how she would be.
We went for walks on the beach. Mom loved to collect rocks and would fill her pockets with them, a practice that had started long before we moved in with her. We discovered the trunk of her car filled with rocks, visual symbols of the weight of this disorder - not to her but to us.
She was living in each moment. She noticed flowers in bloom, as we would drive down the street, and I too would appreciate their beauty. She enjoyed her role of giving our cat Salsa treats each night. When Salsa would beg for treats earlier in the day, she would say, "too early honey", stretching out the word, "early". This has become one of her many refrains that Mark and I now use, perhaps as a way to remember her.
We developed certain routines. I would take her to go grocery shopping and running other errands. Only then did I notice other adult children doing the same thing for their elderly parents. I was awakened to how many of us were now in the role of giving care to our parents.
On Sunday mornings Mom visited her friends of more than 50 years, Joyce and Maury. One time when I picked her up, Joyce was not having a good day. As we stood in the dining room about to say goodbye for that day, Mom and I had tears in our eyes, a shared sadness for her beloved friend's confused mind. A bit later, during lunch Mom said, "old people should just be allowed to fly away."
Mark worked at home during this time in our lives. He would take Mom out for an afternoon coffee. She would bring her book with her as she always had done. Only now it seemed that she read the same page over and over. Mark was often surprised at how many people knew Mom and how much they appreciated her. At the bagel shop, they would add extra bagels into the bag. Only later did we realize that the woman behind the counter was someone that Mom knew from her role as a volunteer writing teacher at the county jail for women. This woman had been one of Mom's students.
The two years that Mark and I lived with and took care of Mom were the beginning of this journey for us and for our family. My siblings and I each seemed to take a different path along the way to eventually understanding, accepting, and appreciating the role of Alzheimer's disease in Mom's and our lives.
© Sue Schleifer, March 2009