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Keeping On

Many thanks to Randy for allowing me to publish this letter here for others to read.  It will undoubtedly enable others to understand.

Date: 2/24/98 4:37:48 PM CST
From: Randy Hunter
To:   Liz Armstrong

Liz,

I just wanted to write and update the family situation. I have been out for a "few" days. Our e-mail service has been down and I have missed any and all messages since 2/13/98.

I left work Wednesday afternoon, 2/11/98, with word that Dad
probably would not make it through Friday. I spent all that night with Mom, Dad, and his two sisters in his room at the nursing home where he had been since 12/22/97. He seemed to be holding his own by 9:30 AM, so I left for a few hours of sleep. My wife and I returned at 7:30 PM and stayed until 9:45 PM. At 11:00 PM Mom called and said the nurses said it looked like Dad had taken a turn for the worse and I should get back. I stayed until 3:30 AM and my wife and I returned at 8:30 AM and stayed while Mom left for breakfast and a shower. The crisis had passed. This had been a "normal" week for almost the last month.

Friday came and went. The "doctor" was "amazed" at how strong Dad was but was certain he would not be around by Monday. My wife and I took the afternoon off. At about 9:30, my wife took my night shift while I slept.

It was now Saturday. Dad was still hanging on. He had not "eaten" anything since Friday 2/6/98. A nurse and Mom did get a bout 6 oz. of lemon ice in him over a two day period. That stopped on 2/9/98. Five days without food or water. Fevers came and went along with a horrid cough. On this night my mother, who except for three or four hours each day had been by Dad's side, would "snap." The CNA that left at 3:00 PM had lied about changing the soiled linens. My father had lain in his own refuse for several hours. The night shift incurred the wrath of a woman who was worn, frazzled, and losing her lifelong companion. I left about 7:00 AM Sunday morning. My wife went back to let Mom get some rest. All day long I wrestled with having to spend yet another night waiting. I prayed. Mercifully, God allowed my Aunt to stay with Mom through the night. 

Monday morning I returned to place I had come to hate and see the same pitiful people and smell the same stale stench of urine. Mom was loosing it fast. She had to leave. My Aunt had to leave. It was now Dad and me. After several hours of a very personal but one sided conversation, my Uncle came to visit. The same "doctor" came and was again amazed. I asked if the oxygen my dad was using was of any benefit. He assured me it was mainly to make the family more comfortable. I guess it was supposed to make us feel they were doing something for Dad. Dad's blood pressure was dropping. The "doctor" removed the oxygen tube, said he wouldn't make any more predictions but would probably not see us again and left. Mom returned at about 2:00 PM and we went to the lobby to eat lunch. She finished first and went back to Dad's room. He looked terrible, worse than he had ever looked. His bp was off the scale, breathing was shallow and his color was very blue. My Aunt returned. Mom finally told Dad she couldn't bear to seem him suffer any more and she would be O.K. Just after 3:00 PM I went to my car to call my wife.  

When I returned, Dad was with Jesus and the room I hated was peaceful and quiet. I said goodbye, held my mother and felt God had given Dad release and Mom and I the "peace that passes all understanding." From beginning to end only took seven months. My once very active, vibrant, hard working, loving, giving father lost his battle with a disease he had never heard of and certainly didn't understand.

I was told by a Hospice nurse that had had two other CJD patients that getting an autopsy would be difficult. Right or wrong, we opted to let it pass. Dr. Gold at USF was pretty confident that the disease was sporadic. We had the memorial service on Friday. Dad's remains were cremated and we buried the ashes on Monday, 2/23/98 in Florida National Cemetery.

We are now in the process of getting CJD listed as the contributing cause of death instead of hart disease as listed by the "doctor." Liz, thanks for the ear. I submitted a member profile today and hope to get active in getting CJD listed as a reported disease in Florida.

Thanks to you and the other members for your support, prayers and information.

Randy

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