ELLA CLAUDINE OWEN MAXWELL
April 10, 1931 - May 21 1996
The first Saturday of March 1996, was a beautiful day. Warm sunshine and low breezes held a promise of spring. This would be the last outing I would have with my mom before sorrow struck. On March 31, I received a phone call from a minister 30 miles north of where my mom lived. He, and a group from his church had come upon mom, sitting in her car, in the middle of a country road. She was lost, and all she could tell them was that her daughters phone number was in her billfold. I immediatly drove to get her.
The next day we started in the emergency room, as I was afraid mom had suffered a stroke. The Doctor started with an EKG and blood pressure monitoring to make sure mom was not in danger. He ruled out stroke and scheduled a barage of test to take place over the next weeks. His diagnosis at this point was dementia. Mom was showing signs of anxiety which would seem normal, as she was already convinced she had cancer (she kept telling me she needed an onocologist ). I coaxed mom into coming home with me so I could be with her, should she need help. The next doctors visit was Friday. We were appointed a general Dr. (mom was a military dependent)
After more blood work and a MIR scan, the disease mom dreaded most was ruled out. She was elated. My aunt and uncle had come to visit and wanted mom to go home with them for the weekend. Mom was still mobile and eating well when she left for her visit, by Sunday my aunt had called. She was frantic, Mom had to be led to the bathroom, and refused to eat for them. They brought her home that afternoon. As I observed her that afternoon, She suddenly jumped up from her chair and went to a basket in my living room, she wanted to make a collect call, when I asked her who she needed to call she became really frustrated, nothing would calm her. The following week there were episodes of Snakes everywhere and problems with line vision.
As I was preparing her for bed the following Sunday night, Mom started raking everything off the sink into the floor, when I tried to stop her she attacked me. I was terrified! Never in my life had momma ever shown this kind of violence. Monday, I called the next Dr we were to see, and explained we needed to see him immediatly. He pushed the appointment up to the following day. This was a psych officer, he was to determine the damage caused by the onset of Dementia. We arrived on time, and the walk from the car to his office under normal circumstances would have taken two minutes at most, took us fifteen minutes. Once there, a small step was a major obstacle - another ten minutes of coaxing. Finally inside his office, we discussed the events of the prior days. After questioning mom, "Mrs. Maxwell, do you know where you are? Do you know where you live? How old are you? Who's president?" He called the neurologist, momma was admitted to the hospital at once. An EEG was done about one o' clock that afternoon. Dr Shutter, asked me if I would be at the hospital about the same time the following day, they wanted to do the procedure again to make sure their readings were consistant. I agreed and the next day we did another EEG.
On Thursday April 18th I received a call that we had a diagnosis and a family meeting had been called for that afternoon. This was the first time I heard the words Creutzfeldt Jakobs. When I left the meeting , all I knew was that this was fatal. No treatment or cure was available. This was a rare disease, only a 1 in a million chance of getting it. They would report it to the CDC because it is so rare. I called my sister in Puerto Rico and told her about the disease, and suggested she come home right away. I went to my computer and entered the name on Groilers Search, two lines, the definition explained that this was a spongiform encepholophy and mentioned prions. My cousin was a student at the University of GA. He found a couple of pages in the Merritts Textbook of Neurology. At this point we knew as much as the Dr's. The Dr's and staff at our hospital were very understanding and kind. A small ward Mom received alot of individual attention. Dr Shutter had recommended we forgo the spinal tap, as this would only hurt momma more. Discussions about donating mom's brain and the second copy of her EEG to UAB (this was the hospital that the second diagnosis had come from). We all agreed this would be what we wanted.
By mom's third week in the hospital , the staff had agreed that we should move mom. I made arrangements to bring her home with the help of Hospice. At this point we were told that UAB would not be interested in the brain nor would they consider doing an autopsy. We brought mom home on Wednesday, May 15th with a prognosis of up to three months. Mom left us on May 21st. From the beginning to the end was 51 days. From the onset , this disease ravaged my mother, you could see decline first daily, then hourly. Of all the symptoms and suffering I've always wished there was some way I could have taken the fear and the monsters away. Mom was a gardner, a reader, a shopper, and a loving grandmother. She turned 65 on April 10th 1996. She is greatly missed. I know that she would want me to reach out to those who are experiencing this now. Theresa
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