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Creutzfeldt-Jakob Disease: Lisa
My story begins in April 2006. My mother began showing personality changes. A woman who was usually outgoing and loving and served as the pastor of her church for 19 years became withdrawn, depressed and forgetful. We proceeded through the year believing her actions could have been related to her longterm line of illnesses which include: polio, epilepsy, hemochromatosis and fibromyalgia. But as we entered into January '07, the doctors diagnosed her with Alzheimer's disease, but it was progressing rapidly so her family doctor sent her to Charlottesville, Virginia for further testing. They took a sample of her spinal fluid and sent it to Akron, Ohio and with that all the tests linked to CJD.
By the summer of '07 she could no longer drive or function properly. She began having hallucinations and loss of reality. In September of '07 she came to live with me and my family. The first week of October she was signed onto hospice. From that moment on, it was all downhill. She had to be watched twenty four hours a day; she wanted to leave; she wanted to get into everything; she thought baby dolls were real babies (we bought 11 of them, and she insisted they were her children); her appetite decreased; she wanted lots of fluids; she had horrible headaches until we had prayer with our pastor, and from then on, things got better than what they could have been. By November, she wasn't aware of the disease any longer. December was the worst of it all. She lost the ability to chew or swallow her food without being told to do so. The disease had completely taken over my mother. The morning of Christmas, she had a heart attack and was put in the hospital for two days. When she returned to our home, we were told we only had a matter of days. December 28 she went into a coma, and the hospice nurses said she would not come out of it.
But that night my son came to see her and when he took her hand and said, "Nanny, it's David. I'm here." She opened her eyes and looked at him. She was speaking to me and him with her eyes. Once she was finished letting him know her wishes, she closed her eyes only to open them again the next day for my daughter because she asked her nanny if she could see her eyes one more time. Being the great nanny she was, she honored that wish. The hospice nurse said it was a miracle, which we already knew. After that, she never opened her eyes again.
She began to foam at the mouth and nose we had to use a suction machine every twenty minutes for the next two days. On December 31, 2007 at 10:10 pm she took her last breath. She left us to go to heaven. Through all of this my husband was like my right hand. I promised her before her mind got bad that I would go with her until the end, and I honored that wish. I also know we were the blessed ones to have her as a mother, a nanny, a great grandmother and to have had her here at our home. God does hear prayers. There are some things that this disease did to my mother I have left out of my experiences for her privacy.