I cared for both parents and I’ve written about the experiences with my mom. However I have said little about my dad.
My dad died from a form of brain wasting. It was diagnosed as sporadic Kreutzfeld Jacob disease. It was a quick way to go and a as best as I can tell the victim is not aware that there is a problem. My dad started by having memory problems. His short term memory was first to go. My mom was the first to notice this when he would go grocery shopping then forget why he was at the store and leave. At first we thought of Alzhiemers but soon discovered it was more than that. My dad was one who took care of his appearance. He was always taking shave and change into nice clothes when you went shopping. We first notice that he would get ready to go shopping then he would basically sit down in wonder y you just done what he did. He went through bouts of confusion during this time. My mom took over driving duties since she was afraid he might have an accident.
The onset was quick. He studied degrading mentally very fast. He stopped taking and call me by name. He started referring to me as that other man. He started taking longer naps. at this point he was somewhat aware that something wasn’t right. We visited the doctor and the doctor referred us to a specialist who ran a series of tests. A brain scan revealed a lack of activity in large areas of the brain. After awhile he stopped talking. Later as the brain wasted he would stop talking but his mannerisms and speach was that of the child. It’s gone from man of 80 to a child maybe 6 years old. At this time I became more of a mischievous child than an adult. He now required constant supervision. I had some children’s books around the house and he found these very fascinating. He would read these books out loud a simple questions about things get better about. I also had a small toy that talks when you squeeze it and he would take and play with that for hours repeating the words as the dolls spoke. This went on for months at a time and we do a lot of energy to keeping him safe and entertained. With regular doctor visits the doctors were monitoring his progress and good give us no hope for any recovery. All they can do was telling us how to care for him and make him happy. As a small child he got into mischief a lot. he’d never been a very agile man as he had arthritis but sometimes he would surprise us bye doing things that where things you’d expect a six-year-old to do. One time while sitting in the backseat of my car going to the doctor he decided he’s gonna take all his clothes off. I had to take and get off the freeway quickly and find the place where I can take care of him. I got him dressed again but he refused to put his shoes on he wanted to go barefoot. So I obliged him and let him travel without his shoes on the doctor. I found having child proof locks in the rear seat was a godsend. I could not love him sit in the front of the car because he became a hazard to my driving. my dad is at least had the assistance of my mother. This was a very hard time prefer seeing them and she loved slowly fade away. Overall I think this attitude her skepticism of doctors because she did not trust the diagnosis. This would come back later when she was ill give me all kinds of problems.
Finally got to the point where my dads vital functions were affected. At that time we knew the end was near and arranged to do home hospice. My dad stopped eating and had already taken had problems breathing so we had all the equipment on hand to address this. We have your advance directive which we followed very closely. It was to be no extraordinary support or any issues with resuscitation as it was a no recesitate order. This all went well until one day my sister came to visit. See in a panic not knowing how to handle the situation got upset when outside and dial 911. This led to the confrontation between me my mom and the paramedics. One thing people must remember is if you are in a situation where you are doing Hospice and the paramedics were called they will take take the patient and transported the nearest hospital. In this case my dad was put into one hopital then transferred to Kaiser Permanente. This incident upset my mom very much. I went into panic mode and went to the hospital immediately. I immediately moved to invoke the advance directive for healthcare and the do not resuscitate clause. That’s a multi-day battle with doctors and lawyers of Kaiser Permanente. I eventually prevailed but only after finding a sympathetic doctor who stuck his neck out and followed the directive. Is feeding tube removed and any oxygen removed mostly because I could tell that he was existing only because of these actions. He was not responsive and it was only a matter of hours before he passed. Because of her previous encounter with one doctor at the hospital who wanted to do a brain removal his death I stood by until his body was transported to the mortuary. Finally we had him cremated and I still have the ashes. This marked the end of his life and the start of the decline in my moms health.
During the time my dad’s passing my mom assumed most of the duties as caregiver. I was working at a time and living up in Long Beach. However as my dad got worse I would spend many a night in Anza and commute to work the next day. I remember the day when I was notified of my sisters actions I was not there but sprung into action. The results of my sisters actions so angered my mom see specifically took my sister out of the living trusts. My sister to this day still does not see what she did is wrong. That is why in some cases I don’t consider myself as having any family. There are issues with how we face death and dying. I’m hoping what I write helps someone handle this difficult time.