C.J.'s Story

The thing that first alerted me that something was wrong with C.J. was his inability to be still. He would drive almost all night, just around town he could not sleep and he also was doing some very inappropriate things. He was losing weight as he could not sleep. I finally got the car keys away from him and got him to let me take him to a doctor.

The first doctor ran some tests and was concerned about his heart so (he) sent C.J. to see a doctor to do a stress test. These tests also showed some signs of dementia - so he thought..

The doctor we went to about his heart results was so upset and concerned about his inability to be still that he decided that he needed to see a psychologist, which we did. From there they decided he needed to go to a private hospital that treated mentally ill. This I agreed to also, which my insurance would not pay for. He continued to be treated by a psychiatrist who just saw him to prescribe medication, which often seemed to make him worse.

I finally decided to see another internist and finally found one who would see him as I would tell those I called to make an appointment that he had been diagnosed with dementia. When I saw this new doctor he noticed that C.J.'s hands had no muscles in them. He was the only doctor that thought he needed to see a neurologist.

When the neurologist saw him he did some needle test and thought he might have Lou Gehrig's disease. He did a brain wave test later. He then decided to send C. J. to a doctor at LSU Medical Center who had more experience I guess. The test files were sent to the doctor in New Orleans before we got there.

After a few tests by another doctor in his office he came in and examined C. J. and told us right then that he thought he had CJD and what the prognosis was. He said we could have a brain biopsy done then or wait until he passed away. Of course, we elected to wait.

C. J.'s condition deteriorated rapidly after that. He died about 10 days later. All through his illness he could not sleep, he could not sleep and none of the medications he was on helped, he had hallucinations, at times he was abusive, would not take his medication and once when I was asleep he went to the neighbors house in his underwear, the neighbor brought him home so I had to put a latch that he could not open on the door.

During these months of his illness it was so heart breaking to see him deteriorate before my eyes. God was good to us in that he let C. J. remain at home with me until he died.

The day he died, Sunday, was one of the best days we had in a long time. He talked some as his speech was getting worse, he ate better and did not need his medication. About 10:00 p.m. he went to sleep in his chair, he could not lay down in the bed as his chest muscles were gone and this caused his chest to press on his lungs causing him not to be able to breath.

A short time later I noticed he seemed to be in a deep sleep, something he usually did not do. Then I noticed he was drooling and I pulled up a stool beside his chair and wiped his mouth talking to him about what a good sleep he seemed to be having.

Then I noticed his breathing was irregular. In a matter of minutes he took a breath and them just quit breathing. I was holding his hand at the time and knew he finally was at peace.

I call my sister and then a neighbor, who is with the sheriff's department here. He was there in a minute and said he had to call 911, which he did, but he had felt C. J.'s pulse and he too knew he was dead.

When the EMT's came they ask me if I wanted them to try to revive him and I said no, as I knew he would not want to be, not that they could have. I knew God had answered our prayers and released him for the horrible world he was in.

This is more than you asked for and I am sorry for going on so long. It still is painful after this length of time. He die on November 3, 1996.

One of my daughters, I have four, is having a very difficult time as she did not get to see her dad that weekend and then the body was sent to New Orleans that night to have an autopsy done then they told me that they would not release the body and that I would have to have him cremated, which I agreed to as I thought I had to, now I am not so sure. I think that maybe the funeral home was afraid to handle it as they showed me a article about not being able to kill it (CJD).

Barbara

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