Chapter 618 - Stuff as Another Year Drags Away

 Mid afternoon yesterday when I checked on her she was slouched forward in her wheel chair, head drooping, sitting quite still. She was looking at her right hand where blood had dripped off the index finger. Blood on the floor had been rubbed with tissue beneath her foot, her standard method when attempting to remove marks on the floor. the trickle of blood down her arm had begun to clot, so the 1.5x1.0 cm of skin missing from half along her lower right arm had been removed some time before I reached her. Dried blood was on the fingers of both hands. She was most unconcerned about the blood and had no idea what had damaged her arm. There were no cuts on her fingers or arms, just the area of skin missing. She flinched as I pulled away a small piece of loose skin, I sterilised a small pair of scissors to cut away another small flap of skin. The area was no longer bleeding. I covered the wound with a wide band-aid to which I had placed a drop of Betadine. I have since applied several non-stick dressings to the wound. I suspect she had been cleaning the leg of the adjustable and tilt-able over bed table she now uses to eat from (she rubs surfaces with tissues wherever she finds "dirt"). When I looked again this morning for sharp edges on the table I found a black hex round headed bolt, with razor sharp edges, part way down the leg of the table. A label around the bolt head reads "DO NOT REMOVE"; I suspect it has something to do with the height adjusting mechanism within the table leg. The bolt head is now covered in several layers of duct tape and she has strict instructions not to remove the tape (another of her pastimes is to remove tape off surfaces and boxes). I am bothered that she failed to alert me when the accident happened, and had no idea how the damage to her arm was caused. Long ago I removed most sharp objects from her access but there are still some small knives and such in the kitchen which I must place out of her reach. 

Yesterday I sent an email, part of which reads 

"I often wonder whether the 1944 diagnosis of "softening of the brain" of [her great grandmother] Selina [F..../M.../H...] may have been the term GP's used way back then to describe the symptoms displayed by P: inability to respond to questions, difficulty speaking, unable to remember names, increasing bouts of sleepiness and what I refer to as "zombie" mode when woken before, say, 0900, inability to grasp/hold objects in her hands, inability to dress herself, difficulty feeding herself that is deteriorating to pushing pieces of food onto spoon or fork with her fingers, obsessive/compulsive activities such as pulling threads in clothing or fabric, a need to remove labels on clothing, boxes etc. and the list goes on. Looking on line the word Encephalomalacia seems to be the modern term describing the vague term "softening of the brain" and seems to be associated with injury so may not apply here." 

In recent months she has exhibited increasing bouts of "sleepiness", which I often refer to as "zombie mode" between the hours of 0600 and 0900, perhaps being less than alert as most people are on first waking after which she may become less responsive, staring into space, unable to do anything other than sit on commode or wheel chair. Sometimes she may be showered in this state if the condition is "mild" but more often I have returned her to bed before carers from Wild Dog arrive. Consequently comments about her condition and being in bed so often have been made. Once again I spoke to a nurse at the state PD organisation. She assured me this "sleepiness" is another typical condition of long term PD. So I asked Wild Dog to change the time of the personal care visit when she is showered from 0800 to 1000, beginning on Monday of this week. The following day, Tuesday was an interruption to the plan because I had my nose melanoma procedure booked for 0700, so she was showered at 0600 then returned to bed, remaining in the care of one carer until a second arrived at 0900 when she was sling lifted into her wheel chair. I returned home about 1030. So although the 1000 starting time has hardly been tested yet she has so far remained asleep between 0600, when I make changes to her Duodopa pump, and 0900 when I get her up to sit on the commode, do a little exercise pedalling and begin breakfast.

Recently I had the 2021 year of this blog printed as well as downloading each two years of posts as a pdf file, beginning with the earliest pair 2006/7. I even found my earliest blog attempt at recording this adventure of almost a 3rd of our lifetimes, named "Progression" (without the Two) and downloaded that as well. I have irregularly had printed version of these years made as well, complete with typos, bad grammar and spelling mistakes because I never intended this to be a perfect "history". And in skimming sections as I made the pdf's I realised how much detail of our progression I had forgotten. Such is my life, my memory