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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Unfortunately, I can share my family's experience with ALS when my mother was afflicted. Despite the fact that my mother complained for several years of excruciating pain in her right shoulder and neck, she was not diagnosed with ALS until 3 months before she died. She was a cafeteria worker, and one day at work, her arm stopped working. It became useless, just like that. She consulted a doctor, who diagnosed her with carpal tunnel, and he did carpal tunnel surgery. My own husband had carpal tunnel, diagnosed by a neurologist and repaired by a neurosurgeon. His symptons were nothing like my mother's. Of course, the carpal tunnel surgery did nothing to help my mother's useless arm.

My mother's left leg began dragging several years later, and she got a brace made to help the weakness in her leg. She continued walking until only about a week before she died. She would choke on food, until eventually, her food had to be cut up small and eventually blended in a blender. After she lost use of her right arm and hand and her left leg, she suffered a stroke which left her left arm useless.

I would get mad at my father when people would ask him how my mother was doing. He would shake his head and say, "Not good." I would say, "She's doing great, getting better every day." I never saw death, rather I thought my mother was getting better.

My father then began having to bathe, groom and dress her as well as feed her. My mother never lost control of her potty habits, so if my father had to leave the house, he would put a nightgown on her so she could hobble to the rest room by herself. He cared for her until several days before she died. It was only shortly prior to that when he rented a wheelchair for her.

I went back to 1996, when I believed my mother's first symptoms of ALS to have appeared. She died in 2000. Her mind was clear, and she was able to make bits of words to converse up until about 3 months before her death. She liked the grilled cheese sandwiches I would prepare for her and cut them into tiny squares. Each bite I fed her, we would say, "Ummmmm!" The last time I saw her was 3 months before she died. My father told me that she had begun drooling, and he kept a bib on her. Her shirts would be stained with drool. She could not even scratch her nose if it itched. She would say to my father during the night in bed, "Cover me up."

The last time I saw my mother was in June 2000. This was before 9-11, when family could sit at the airline gates with passengers. My mother wanted a box of Good & Plenty candies as we waited for my boarding call. I fed her the Good & Plenty, one at a time. She said, "Are these ever going to be done?" But, she ate every last one. After I boarded, and as my small commuter plane taxied down the runway to my destination to catch a large jet home, I could see the sillhouettes of my parents standing inside the terminal. I waved from the window of the plane, not realizing I would never see my mother alive again.

My father told me of her final days in the hospital, how she suffered and how he remembers the look in her eyes. She uttered to him, "Help me." My great-aunt (her mother's sister) visited her and prayed for her. I was so grateful our aunt saw her before she died. I never could thank her enough for being at my mother's bedside, and felt it very important she was with my mother.

My mother was very beautiful, vivacious, and fanatically neat and clean with her person and her home. She had just turned 65 when ALS claimed her life only 22 days after her 65th birthday. My father played the piano and sang to her on her birthday. He said he knew she was not doing well.

My father cries when he speaks of my mom's affliction with ALS. He saw horror, I know. I tell him often how proud I am of him, that he honored his marriage vows, to keep her in sickness and health and to never forsake her. I told him Grandpop, mom's father, would be proud to know my father was such a loving, devoted husband to the very last. My father had promised my mother he would never place her in a nursing home. I know it was difficult beyond comprehension to take care of her, but he held true to his promise.





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