Status Quo

Has not been many significant changes in the past days. We have MD visits upcoming which hopefully will bring answers to some big questions. Mainly, why is the fatigue so debilitating and what can we do to keep that left leg stable. Pops has been on a major medication journey in the past week. He is taking .5 mg Dexamethasone twice daily- which seems functional, but needs 120 mg of Oxycontin to stay functional and in a diminished pain state. He also is using supplemental meds for breakthrough pain. Main issue is the amount of meds and also the fact that he takes them and there is limited functional activity past meds. Quality of life if lessened and this is a major concern overall. was taking more Dexamethasone and doing better but it keeps getting emphasized to decrease the amounts for "long term benefit". My thoughts are to take what you need to feel good and function. I would rather feel good and live a quality of life for a shorter period than take less meds that can have long term detriments and live 6 more months. That is my opinion- not Lone Star's. But quality of life to me is always key after 14 plus years in the medical field.
Communication of needs: Pops used to sleep till 6 or 7 and then get up and have quality time from 9 till about 1 PM. He used to sleep at night and have good hours in the AM- this has changed in the past month and a now he can't sleep comfortably at night and gets up at 4 or 5 and takes meds and then zonks till 10 or 11. It is good for him because he is getting his best rest at this time- and he needs it. As stated, he used to sleep at night and have good hours in the AM- this has changed in the past month and a half. Yet he needs EE/ Mom to be there because if he wakes up he can be confused or have anxiety in the situation. The problem is that my Mom needs exercise and activity to with her MS. Her prime time for this is the morning hours. It is a noticable dilemma in the past weeks. They have been getting to Coral Desert less than 3 times a week for exercise and Pops has developed a bit of a "hermit" mentality. I encourage him to get out but he is gun shy- mainly because he does not want to fall. He has had falling or difficulty with getting around on a few of his last big excursions. I cannot blame him with the fear of falling. The pavement here is hot enough to boil an egg at this time- literally.
We are exploring options for continued independence. It is needed for both of them. Pops spirit needs to stay up and EE's physical needs need to continue to be pushed. She is the primary caregiver at this time for their home and she needs to be physically as ready as possible as well as having the best ancillary support possible....

Irony of irony:
Phone just rang and it was Paul. He left a message saying Pops was on the kitchen floor and he opened up some scrapes on his arm that we have been bandaging with Xeroform and Medipore tape. Luckily, they called Cathy (who lives close by) and her and her husband, Bill, came over and got him up. I called him and he stated that we need to figure out some plans because my mom can't get him up. I informed him, which he also stated, that it was probably only gonna get worse. I hope for some peak in his bell curve of decline for quality of life.
Of note, I am so thankful for Cathy and Bill for being close by and making a catastrophic incident into a an ordeal that is handled- even by the time we get the message....