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Steve's Story
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Steve

My mother died from Alzheimer's disease in 1993. I wrote this when I was in college to explain how it was dealing with this disease as a child. I hope that by sharing my story it may help others. 

She was a beautiful Jewish-American girl. Her hair was as black as night and her jasmine eyes lit up a room. Her name was Lois: she was my mother.
    
How does one deal with the slow death of a loved one, a parent so loving and kind that all who knew her loved her? She was a person robbed of her dignity, soul and mind by a cruel, crippling disease called Alzheimer’s.
    
Lois was born into a strict Orthodox Jewish family in Detroit, Michigan. She was a great lover of music and children, with a heart full of compassion and loyalty. As a young adult, she attended the University of Michigan where she received her teaching degree. Using her gift of music, she taught in a small suburb of Detroit. At the age of 28, she met my father, Morton. Three years later, they were married and later, had four children, of which I was the youngest.
    
My mother was a great representative of the Jewish faith. She taught the rituals performed during the holidays of Hanukkah and Passover to a variety of groups in the community. She was also the Cantor (singer) at our synagogue. Her expression and love for the words of the Shama (a prayer that is sung) sent shivers up my spine. I can remember her singing, her voice carrying through the synagogue. I close my eyes and can still hear her like an angel reassuring me.
  
No one can understand the magnitude of Alzheimer’s disease unless he or she has been close to someone who had it. Lois was healthy, never smoked, was an excellent cook, and always took pride in her appearance. In the sixth grade I remember her in the kitchen, baking a lemon roll; this was a tradition in our family to have during Passover. She was attempting to write down the recipe for a friend, and she kept asking me how to spell words. I could not understand why my mother could not spell words like: “the”, “tablespoon”, “batter” and “sugar”.  I thought she was kidding; those words were easy.  I joked with her about it, we both laughed, and that was the end of that. 

After that, she slowly began to become absent-minded. She went from a gourmet cook to an arsonist! My mother burnt everything.  There are a few incidents that stick out in my mind, like trying to make a meatloaf and forgetting to turn the oven on, or making a cake with salt instead of sugar. She was getting increasingly absent-minded. One day I had a friend over, and she was making us lunch. My mother had turned on the stove, carefully folding a hand towel; she set it on the burner and placed a pot on top. While in the living room, I smelled smoke and ran into the kitchen. There was my mother, standing next to the stove, mesmerized by the flame, with no idea how it happened. Unfortunately I was only in the seventh grade, so I chalked it up to her just being careless. 
    
The next few months stayed relatively the same; my mother was still substitute-teaching and still having accidents. The other kids in school would sometimes tease me about her, telling me that she was stupid. I was truly embarrassed. I thought that if I were good and stayed out of her way, she would be able to concentrate more. I remember that I spent a lot of time away from home.
    
One day my friend and I were riding our bikes around our small community in Michigan when we saw flashing lights ahead. Since nothing much happened in our town, we thought that we had better investigate. As we approached the mall, I could see my mother’s car being removed from two cement parking blocks as the tow truck driver stood by and shook his head. I sped to my mother and asked her what had happened. Her reply was, “Those things weren’t there yesterday!” I looked over at the cement slabs and knew that they had always been there. That night my father sat me down and told me, “Your mother has had some problems lately and will be going into the hospital for some tests.” I was just starting the eighth grade.
    
Two weeks had gone by when we were struck by the news; my mother had Alzheimer’s disease.
    
She would lose her mind and die a slow and torturous death. I was terrified of losing my mom.  I did not know my father very well; he was a classic “workaholic”. My mother was my role model, my heroine when I was fearful, and my confidant to my greatest problems. I thought that my life was over at 13. 
    
I grew strong for her. I began to read all that I could on Alzheimer’s disease to prepare for the inevitable. My father would not look at his bride. She was regressing fast, and it was too painful for him to deal with. I was left home alone with my mother often. She could not drive anymore, so my father had me driving her around and grocery shopping at the age of 13. My mother understood what was happening to her in the beginning, she tried to stay optimistic. Sometimes while I was doing my homework, she would try to write me notes. Her perfect grade school teacher penmanship turned to chicken scratch. 

My father was around less and less, so the brunt of the responsibilities fell on my shoulders. I never minded though  I loved my mother.  She would love to take walks, so every day after school I would take her. One Saturday afternoon in November we were in the living room watching television. I fell asleep on the couch. Two hours later I awoke to find my mother nowhere to be found. Searching franticly, I ran through the house. I called the neighbors to see if they had seen her. No! I flew to the car to go out searching. 

As I sped out of the driveway, our neighbor came out and offered to help me look for her. After an hour of looking, we found her. She was two miles from the house; she had no coat and her face was tear streaked. All she could say was, “I was just trying to find my way home, I forgot my way home,” she kept repeating this over and over again. 

That day my father realized that I could not handle her alone. He hired a nurse’s assistant to come and sit with her for a few hours a day until I arrived home from school. 
    
It broke my heart to see my mother struggle so. She knew she was sick when she would attempt to do something like a craft or just tying her shoes, she would break out sobbing. She knew that her illness was progressing quickly, and she was forgetting more and more. 

At times, she would have episodes of complete delusion. One night she woke me from a dead sleep at 2:00 a.m. She shook me as hard as she could, “I smell cigarette smoke. Are you smoking in here!”  She screamed at me with such venom in her voice. I tried to tell her that I was not smoking, but she would not listen. She turned and went into the hall then into the bathroom. I proceeded to get up and follow her to make sure that she was not hurting herself. She had started the shower; “I am getting your shower ready, time for school.”  She had no idea that she had just been yelling at me less that five minutes before.
    
By the time I was 16 she had lost all train of thought. She would sit and stare for hours at a time. She had a permanent smile on her face like that of a small child and she could barely speak. She managed to express her basic needs through gestures such as, pillowing her hands under her head to show that she was tired, or bringing her hands to her mouth to indicate being hungry. I missed making her laugh or telling her stories. I felt very alone, a prisoner with my dying mother who was a child trapped in a woman’s body.
    
When it came time for my graduation from high school there was nothing that I wanted more than to move away. I wanted to get away, as far away as possible. By this time my mother had lost her bladder control and could not bring a spoon to her mouth. She lost the smile from her face and could only mumble, “BUB BUB BUB BUB BUB.” I can still hear it. We had no choice; we would have to put her in a nursing home. 

I left home for school in Florida three days after we had admitted her. I did not come to visit for three months. During that time she regressed quickly, she did not even recognize or acknowledge me being there. It seemed that she had aged 10 years in those three months. I could not help but feel responsible for leaving her. My mother remained in this vegetative state for the next six years. 

I continued to visit her every other month. The last time that I saw her alive was in January 1993. Soon after that visit she lost her ability to swallow and drowned in her own saliva. She passed away on January 29, 1993; she was finally at peace. I loved my mother with all my heart and soul. Taking care of her was the most difficult thing that I have ever done in my life. Having overcome the fact that I was but yet a child, given the adult responsibilities of caring for my mother. I had to grow up very quickly. 

Although, in taking care of her, it also made me incredibly strong emotionally. At her funeral I did not cry, I felt more of a feeling of relief than of sorrow. As my brother gave her eulogy he told us, “Try and remember my mother before she had gotten ill, when her heart was full of spirit.” 

The odd thing was, she had been sick for so long that I could barely remember her as my caregiver. I remember her struggling to maintain her sense of dignity. I remember her look of anguish when she could not remember my name. I remember her slumped in her wheelchair oblivious to the world around her. I remember her frail body with little life left in it. I remember the look of peace on her face while she lay in her casket. I just have to close my eyes and I will always remember.    


 

Alzheimer's Association

Our vision is a world without Alzheimer's
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.