Chapter 583 - How Not To Care

 This morning began well at 0610 when I changed the flow rate from 3.2 to 7.0 and initiated the Morning Dose as usual. She did not wake, although her feet kicked a little for a few minutes as she became partially conscious. I began treadmilling while being entertained by a Great Courses lecture. She pushed the bell button hanging from the monkey bar over her bed at 0640. She needed the loo. Transferred her to the commode then onto the pedal machine where she had her, now regularly, laxative powder in a small quantity of water and 4 hydralyte tablets in a bottle of water. She was quite good when the Wild Dog carer arrived at 0750. The heat rash on both legs was still present this morning so the carer applied Savlon to the areas around each knee; I doubt the Savlon will make much difference but is care for care's sake. I replaced both the cassette as well as the pump batteries, an extra routine on Sundays. The stoma has improved over the last few days since I found blood around the opening; she says there is sometimes pain when I move the tubing back and forth each night as regular maintenance but there is no pain when I press gently around the area. The stoma tends to inflame and produce discharge after she has spent time bent forward in the wheel chair cleaning the floor, reaching for objects on the floor, cleaning parts of the wheel chair. Anyway, when her breakfast was almost complete, the white of chewable calcium tablet dribbling down her chin, she decided to sort the binders of embroidery guide sheets she once printed in large quantities. When I asked why she said she needed to "compact" them. Quite frequently she goes through this process with over a dozen loose-leaf  binders of 2 ring, 3 ring and that type with lots of "pegs". She does not appreciate that the spacing between the holes in the plastic sleeves is slightly different between the 3 types of binders so much time is wasted attempting to force the sleeves to fit, which only damages the envelopes. Then she attempts to consolidate sheets of paper into the envelopes and what were nice flat sheets become crinkled rubbish. So like an inconsiderate parent I threatened to toss the "toys" in the garbage bin only to motivate to work faster yet with greater confusion; she would not stop so I grabbed some folders to make good on my threat and took them out to the garage. She persisted, so I wheeled her into the sewing room to sort out the stuff scattered around in there. Some time later she called me to get her out of the sewing room and her feet up. She was hot and sweaty, wanting the fan on, and that I did as well as get her a Hydralyte ice block. I replaced the Exelon patch which I had forgotten to do earlier. I left her watching an episode of "All Creatures Great and Small". On checking her 30 minutes she was tugging at a loose thread on the bottom edge of her blouse, I trimmed the thread with scissors before the blouse was destroyed.

A few days ago I discovered BritBox in my search for entertainment for her. Subscriptions to Netflix, Stan, Prime and the like serve atrocious junk in the main, the majority exported as "culture" from that tottering society that thinks itself "free". BritBox streams British comedy, drama and documentaries most of which is well worth watching. I am hoping she does not tire of it too soon.

Other than a phone call from someone asking whether we had any questions, the Skype application still waits on the supplied tablet for regular conversations to take place between a volunteer and her. I have my doubts the effort will be successful. I was told recently by someone that a phone conversation was confusing and that she seemed confused about who she was speaking to; a case of too little too late.

At the end of December she came to realise there was an area bare of varnish on the plinth of the book case that holds the ring binders mentioned above; a bare area the result of one or two of her cleaning efforts months ago. She has lots and lots of coloured felt pens which she applied to the bare wood, first in light tan shades, then progressively darker until the area now looks black, even though some glitter seems to have been added as well.

In checking on her just now when I heard no TV-like noises coming from the back room, I found her roaming around the endless streaming applications. Something had happened in "All Creatures Great and Small" to displease her. So back into BritBox where she decided upon "Doc Martin".

Quite happy with myself for noticing an improvement in her dyskinesia seemingly associated with electrolyte intake, and then finding that confirming clinical paper, I attached the long unused FitBit to her right ankle on New Years Day, a day most disagreeable. She was stressed, she was dyskinetic, my clever deductions about electrolytes out the window. Then the next day, by sheer coincidence (miracles do not happen in my world), Radio National was playing an interview while I was busy doing something or other, the details since forgotten, when my consciousness took note of the speaker discussing the ill effects of eating liquorice, mainly blood pressure problems if I remember correctly. She eats liquorice more often than chocolate, each week I replenish her stock of liquorice and chocolate. She seemed to remember having eaten a lot on New Years Day. Anyway, I decided to put liquorice out of her reach and increased her morning intake of Hydralyte to four tablets. I "think" her dyskinesia has much reduced. In a day or so I will reattach the FitBit and compare the charts with those from many months ago and, perhaps, allow her to pig out on liquorice a few days later.

During the last few weeks she has needed to lay down and sleep during the day, morning or afternoon. Yesterday she slept from 1300 to 1530 even though she has been sleeping very well at night, not disturbing me with bursts of dyskinesia rattling her bed in the early hours.