Greetings after a weeks hiatus. We had a great two days in the North Carolina mountains checking on Eagle Rock, our almost-complete mountain house. It was an expensive weekend but worth it for me, at least. When we paid our sitter for the 48 hours of staying with Kenny, I believe we realized just how much my labor with him is worth on the market. I believe I could get a job doing this and we could easily survive the "crunch"! Anyway, we came home to a much appreciative Papa. He decided that I was okay. Nobody else knew quite how to do things right.
He has been doing really well with the exception of some occasional blood in his urine - something that we have to expect with this bladder cancer. Well now, we go from "pee to pee", pink to clear. I am sure that it is disturbing to him but we have tried to explain that this is going to be an ongoing condition that will not change. He and I have finally developed a kind of cheerleading attitude. "Yay, it clear!"
He told Jessie the other day that he was going to live a whole lot longer. And then yesterday he developed some pain in his lower abdomen which did not diminish immediately and he began to fret and then he got the jitters. Then he started having some tightness in his chest which led to him telling me that I had to give him a "triple dose of pain killer." I had already doubled his dosage so I told him that he had to give the meds time to work. In the meantime I call Ann, the hospice nurse on call, and she advised me to use the nitro and also to give him an Atavan for the shortness of breath and pain. He then decided that I needed to call Charlie and remind him of their bargain. (He thinks Dr. Sasser told him he would play "Kevorkian" for him, which he definitely did not.) I then informed Kenny that if he thought that Charlie had made such a bargain that he must have dreamed it. I reminded of what he actually told Papa. He let him know that he was not in the business of ending life, of only making his life more comfortable while it lasted. Well, Kenny did not like that and decided that he would just go to bed...at 6:00, without supper, which he did. Of course at 4:00 AM this morning he was wide awake. Last night we caught him twice climbing out of the bed, over the bedrails. I awoke this morning at 4:00 to the sound of the toilet flushing. He had climbed out of the bed, pushed the wheelchair to the bathroom, washed himself, changed his "pullups" and his shirt, brushed his teeth, peed and was on his way back to bed when I caught him. I asked him why he didn't ring the bell. "I didn't need to!" I was furious and he was furious that I was furious. I got him back in the bed and hid the wheelchair telling him he would have to walk to the bathroom the next time he tried something like that. And furthermore, if he fell and broke something, he'd end up in the hospital again and if he didn't like it here, he'd really not like it there. He would not have a slave handy to wait on his butt day in and day out! (I really know how to win friends and influence people, don't I.) I went back to bed, fretted for two hours and made him lie in the bed for three hours before I would let him up. (I am not a bit vindictive either!) This is further evidence to me that the more drugs we have to give him, the squirrelier he gets. He informed me awhile ago that the reason he took himself to the bathroom was that people were all over the house partying until after 4:00 AM and there was nobody to help him. We told him that we went to bed at 11:30 and that we did not encounter any revelers. (The higher the dosage, the wilder the dreams.)
I find it interesting that when I manage a day off or even a morning off, the work load becomes very interesting when I return. I am beginning to realize that change in routine, regardless of how trivial, has a cost and an effect on him. It makes perfect sense; I just had not figured it out. All of this tells me that the next few days will no doubt be eventful and interesting. I will keep you posted. Stay tuned....
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Oh the stories! I remember those from when my mom was terminal. She called her brother in CA with a story that the sheriff was closing the nursing home down and she would be on the front porch waiting for someone to pick her up. Boy, did I get a call from CA right quick. It was the effect of the meds and the progressing mets. Of course I clued in the staff and my sister. Fortunately that was the wildest one. Try to keep your sense of humor even when it is tough. It is advice that I need to follow too. Love Y'all, Ann
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