Chapter 574 - One Day Out of So Many

 I typed the chapter title to this post last Saturday, intending to describe, in great detail, one day in the life of my PDP. I haven't been up to the task, not even now, but I must  do at least part of the chore, simply to rid my mind of it. At this time I am tired, woolly headed, sluggish, and finger movements cause pain in my lower right arm. 

I have been awake since 0300, at first resisting for an hour the temptation to listen to Radio National but a gave up at 0400 to listen to the news after which someone knowledgeable described the differences between the Yank and Oz methods of choosing High/Supreme Court justices, both are political when all is said and done but the Yank method pretends not to be. After that the scheduled programming failed, being replaced by the weirdest music I have ever heard (perhaps I was dreaming?) for about 30 minutes. 

She had last woken me at midnight as she asked for a pillow to be removed from its usual position beneath her feet and I noted that st the time she had no dyskinesia. For at least an hour before 0600 her legs had kicked for short periods but I hadn't bothered to get up and check until 0550 when I changed the current night rate of 2.5 to the current day rate of 6.0 but gave no Morning Dose as I did not wish to bring her into wakefulness. By 0555 the dyskinesia stopped, she remained asleep as indicated by not answering simple questions. She remained asleep without dyskinesia at checks at 0605, 0630 and 0712. She was awake on her back at 0730 and without dyskinesia. Then the normal transfer onto the commode, into the bathroom then onto the pedal machine until the Wild Dog carer arrived to shower her; no dyskinesia. Ate her usual breakfast without dyskinesia. At 1015 she is in her sewing room; no dyskinesia. After I watch a webinar about how male carers must take care of themselves I will return to this typing, perhaps.

Back again at 1400.Up until lunchtime she had been wrecking the small cane basket she had started working on a few weeks ago. She has not been able to explain to me why she needs to pull out the woven cane around the hand holes at the ends of this small basket, maybe 30x150x400 mm. A couple of days ago I found her pulling out threads of the seams at the bottoms of her trousers. Later I noticed the side seams of both legs were open for about 100 mm, the stitching at the bottoms of both legs had been removed and scrap of the fabric was on the floor. One day the boxes of games and puzzles were removed from the cupboard and she began assembling a rectangle of shapes of one puzzle. Perhaps it was too difficult, perhaps it bored her; she packed the lot back into the relevant boxes and I later returned everything to the cupboard. She is disinterested in live TV and series or movies on the 2 or 3 subscriptions I have for her except for "When Calls the Heart" which must have 7 or 8 seasons that she repeatedly watched, at least 4 times.

Friday 9th October, the day before her birthday, I declared "A Dyskinesia Free Day", for I never saw her legs "kicking" for the whole day between dawn and late evening. The flow rates had been 2.5 and 6.0. The days before had been awful days. The following day, her 78th birthday, I kept the same pump settings. Except that from 0530 the dyskinesias were bad but I got her to sleep laying on her RHS. After setting the day rate at 0612 I had to rotate her onto her LHS to stop the kicking. She woke at 0700 back on her RHS but the dyskinesias did not stop so I slid her onto the commode, hurting her leg on the slider board in the process, no piddle on the pot so I wheeled her to the pedals and she was not fully alert, answered questions with grunts. Then she became completely unresponsive although her feet continued to move with the pedals (a pair of slippers is glued onto the pedals) . Her oxygen level varied between a low of 94% and a high of 97%., her BP 141/90  and pulse 73. She remained zombie-like; when the Wild Dog carer arrived about 0800 I had the carer put pull-ups and pad on her while I held her upright with a velcro belt around her waist then returned her bed until 0905 when I found her fully awake, feet "feeling like lead" and her head tingling. So back onto the commode and under the shower where she washed herself. During the day she had 3 phone calls to wish her happy birthday. For an hour from 1500 I returned her to bed to sleep; dyskinesias had been bad.

Sunday began badly, although very interestingly. At 0705 she was quite sure she was "falling out of bed". I tried assuring her that was not possible because the covered side rails prevented that, which had no impact on her confidence at all. She was sure that the bed tilted side ways. After I had a quick shower I transferred her onto the commode where she sensed she was falling sideways. When the Wild Dog carer arrived at 0750 her falling sensation had left her. Later that morning I found her with a ring binder full of at least 100 empty sleeves. She had discovered that many of the sleeves were upside down. I pointed out that hardly mattered because the sleeves were empty. She continued checking each sleeve and reversing those found to be upside down.

During that morning I puzzled about her "falling" sensation, that the bed "tilted". I remember months ago her saying that her bed sloped to the side; I disproved that was not so by checking the bed with a spirit level and that seemed to satisfy her. Then I began wondering whether the cessation  of dyskinesia when she was rotated either left or right when laying in bed may have been a similar problem. Perhaps a common cause of both symptoms may be faulty interpretation of the vestibular apparatus (I consulted Google) of her inner ear. When I mentioned to the neurologist that her body position effected her dyskinesia he responded with "I have heard of that happening." I wonder whether he heard of the cause? Perhaps he was not curious about such things? After I just now took her to the loo I asked her to tilt her head back, forth and sideways, asking what sensations she experienced. All she could say was "I don't know."

The 4 male participants in the webinar I watched this morning  were each asked what comments from friends and relatives were unhelpful. They responded with "You are doing a great job." and directions from professionals during 10 minute consultations that carers follow orders, administer the medications as directed and report back, in a month or six. Neither professional nor non-professionals are entitled to say such such things until putting in a 24x7x52 shift at the coal face.

Chapter 573 - A Fading Miracle

 Don't get me wrong, what I mean by "miracle" is an unexplained outcome, not a supernatural event. 

After she was put to bed at 1815 last Wednesday evening the Duodopa pump began sounding an alarm, a pair of beeps continuously; dir-dip, dir-dip, dir-dip, ............. without displaying an error message yet if the pump was picked up or moved then the beeps would cease, only to begin again some minutes later. I powered off the pump, removed and replaced the cassette, removed and replaced the existing batteries, replaced the existing batteries with new ones but between each action the beeps began again shortly after the pump was restarted. According to the pump's own measure of fluid delivered it was pumping. Then at the next series of beeps while leaving the pump running I disconnected the hose from the PEG-J fitting and did not see any fluid flowing although in hindsight I'm unsure whether I heard the pump cycle. Assuming the pump was defective, I fitted new batteries into the spare pump, attached the cassette and connected it to the PEG-J. No further beeping was heard. Since then her dyskinesias have reduced noticeably or is it just my imagination? And I am being wakened less each night by her bed rattling when I need to attend to her by rolling her from one side to another. The next day I set the "defective" pump at 5 ml flow rate to pump  from a partially used cassette into a medicine glass; after one hour there was 5ml in the glass although the meniscus of the thick white fluid made reading the level difficult. I will repeat the experiment for a longer time.

Meanwhile the "spare" pump remains in use. I have not yet asked West Beer clinic for a replacement. She seems to be suffering less during the last couple of days, although yesterday I began to despair when her dyskinesia seemed to increase again. The FitBit has not been refitted since having it around her ankle bothers her. Although the dir-dips from the pump have been heard in the forgotten past, removal of batteries and cassette had "cured" the problem. The User Guide describes at least 15 causes of a "Two-tone alarm" and there seems to be a displayed message with each except for one with [No message] for which the action required is to replace the batteries.

She no longer wishes to go out in the car or even go around our village in the wheel chair; "too uncomfortable" or "kicking too much" is her response to my suggestions. I will suggest a fish and chip lunch to her later, even though she said no earlier.

She has no contact with anyone other than scheduled daily visits and the one phone call each week from the Wild Dog staff. Her friend down in Hot Air City no longer rings; making one sided conversation is difficult.

Late yesterday afternoon I strolled to the gazebo near the village hall overlooking the river and read a chapter or two of a novel. She had no wish to go. I am tired.