I just noticed that I mis-numbered my last 3 or 4 few chapter numberings; perhaps I'm losing things myself. Well, at my age such is to be expected. Like this morning, I returned her to bed at 0820 after getting her up and onto the commode then onto the pedals half an hour earlier. Now at 1120 she remains in bed although a few minutes ago I had to reposition her feet away from the padded side panel of her bed to stop her dyskinetic kicking; for any restrictions placed on her feet, eg tight sheets or the bed's side panel initiate the kicking action even when she appears asleep.
Anyway, at 1000 the Wild Dog carer arrived to give my PWP her usual daily shower. I met her at the door so that she in bed would not wake. I will shower her later. When I described the current situation at our place the carer told me of her recent experience at home with her parents in Big Smoke; her mother has dementia, her father says the mother must enter a nursing home once he is called upon to clean up a "mess"; i.e. shit. The carer thinks I am doing a fantastic job and that was my cue to therapeutically waffle (therapeutic for me that is) for 20 minutes or so, ending in me following the carer to her car as she exceeded her allotted 30 minutes here. It is just so good to speak to a sympathetic ear, or to be one myself, without becoming a bore. Yet there is never sufficient time available and for the likes of myself I tend to elaborate with side issues, never reaching the conclusion to my original statement. For instance, take this morning, I was attempting to describe the outcome of bowel movements here yesterday, yet never came to my intended conclusion.
Last Sunday was one of those "diamond" days, although only relative within our domestic context these days. Showered by a carer at 1000, she asked for porridge for breakfast. Then I left for the chemist to order her next batch of Duodopa and collect a month's script of Symmetrel. The chemist did nt have the Symmetrel script so I returned home to search for it. Finding the script, as I was about to leave home again I suggested bringing take-away lunch back for her; she asked for fish and chips. This surprised me; she had lost interest in such lunches. Anyway, she ate most of the larger piece of fish and many of the chips. (I carefully reheated the second piece of fish and the remaining chips the next day but she hardly touched it). Throughout the day and into the evening she watched TV (well, the TV was on showing items that were acceptable to her). Around 2030 she had a "meal" of mango smotthie and one or two Tim Tams. By 2130 she was in bed listening to an audio book. During the day and evening there were a number of short duration dyskinetic outbursts.
The following day, Monday, began normally (which I won't bother to describe) but after 0900 when I noted "has done a medium pile of soft poop. Very good!! To breakfast, is docile, legs stiff, dyskinesia" then "0925 Legs ache, dyskinesia, put back to bed, no pants just on a greenie". At 0935 I gave her a bolus dose from the pump hoping to relax her legs and by 0937 she was asleep and no dyskinesia. At 1000 the Wild Dog office rang to say that due to flood waters that morning's carer was running 20 minutes late. We decided not to cancel the service so the showering took place and after the usual stoma maintenance she was in her wheel chair for breakfast at 1100. From then on dyskinesia began and continued with hardly a break. Her daily Symmetrel tablet had no effect. She had several bowel motions during the day. She difficulty swalling any of the fish and chips reheated (carefully) from the previous day, accepted a bowl of pumpkin soup of which she ate some when I fed her then a little of a small custard tart and ice cream. After sitting on the commode, cleaning her teeth, wiping her down, for she was very sweaty, with a damp towel then I dressed her for bed. Dyskinesia stopped as soon as she lay on her right hand side. She listened to a book reading. By 2200 her dyskinesia was strong in her legs. She asked to be rolled onto her back and the room fans to be turned off. By 2300 the dyskinesia had reduced to finer rapid movements of her legs. She thought she could go to sleep. A little after midnight she was still awake, the dyskinesia mild. Rubbing her legs gave no relief to the dyskinesia. I returned to my bed. At 0320 I found her still awake, saying "I've been in bed too long" yet she did not wish to get up. At 0550 I found her awake, holding up the pump which was stopped. Had she stopped it? She didn't know. I later weighed that partially used cassette and compared it to the weight of the one used the previous night to find the weights differed by only 0.2 gm so the pump must have stopped when she had held it up with her thumbs pressing on the buttons of the pump. At 0700 she needed the commode, doing only a small piddle and a small lump of poop. I cleaned her bottom as I returned her to bed and to sleep. At 0830 her toes on her left foot was touching the side panel of the bed and when I moved her legs into the middle of the bed and rubbed her left leg the dyskinesia stopped. At 0930 while seated on the commode again she drank about 100mL of water with a Movicol and about 600mL of flavoured water containing 2 Hydralyte tablets. Just before the carer arrived for showering at 1000 she hallucinated that gardening work was happening across the street. The day turned out to be average for her of dyskinesia, commode stops and unwatched TV. A little after 2100 she told me her sister was in the wardrobe. I checked on her several times during the early hours of Wednesday morning to find her awake. At 0330 she tried to describe a big machine she said I was driving.
Yesterday she passed several large piles of poop while seated on the commode. Then a quantity of what looked like pumpkin soup, as if some sort of blockage had cleared. She has done little poop since then.
Last night she tried to introduce me to someone who she thought was standing behind her. telling the person she could speak to me. She sees crowds of people milling around. Asks whether her sisters have gone. I try to note such comments but in the early hours I am sleepy, dazed and confused. What she says is meaningful to her, I try not to contradict her, to tell there are no other people in our house, that what she sees is in her imagination, that what she sees is all part of her dream.
This morning, beginning at 0140 and finishing at 0420, I wrote 7 notes, some of which make little sense. An example, at 0215 I heard her calling, she told me there was a "crowd" and that "I have lost all her parcels"; was she shopping?? At 0245 I placed a chair beside her bed for me to sit on and someone was told to "walk past him". I was told to "go stop them". At 0420 I went to bed to sleep properly. Today was a less stressful day.
Today, since having breakfast around lunch tome she has been dyskinesia free, but is docile and not interested in anything beyond the imaginary needle and thread she stitches to repair her clothing, the apron I place on her to limit the spread of spilled food stuffs.
Today was tolerable, what brings tonight and tomorrow? Diamond or crap?
