Chapter 526 - Some Fog is Clearing

In the dark hours of Monday morning 29th July the Duodopa cassette ran empty because I had forgotten to replace it during the previous evening. I have failed to do this  before, as well as forget or delay changing the pump from day time to night time flow rates. The resulting effects are either dyskinesia or profound "Off" states. Perhaps I am becoming forgetful, other matters distract me or I am too tired. Whatever the reasons, I have installed an alarm application on my phone that makes a cow bell like noise at 1700 and 2030 each day when those two critical jobs are to be completed. Recently I woke about 0630, half an hour later than usual, to replace the Duodopa cassette and pump settings for day time running, so perhaps I may need to programme that event as well; except that doing so may wake her as well. My lower back pains are gradually lessening, possible because of using Nasonex frequently as well as minimising the amount of lifting I do when transporting her. For instance, I use the small green slider board plus a piece of nylon to slide her from bed to commode each morning and then her first voiding of the day is done on the commode on which she remains seated to use the pedal machine until the Wild Dog Carer arrives to shower and dress her and only after that is the Sara used to transfer her into her wheel chair.

Some mornings after 0900 she becomes drowsy and muddled, although on some afternoons similar problems occur. Last Tuesday she was quite "sleepy" as I took her to the local equivalent of Dance for PD. Once there she was not in a condition to be taken inside the hall, so leaving her in the car I went and told the organisers; one of them said she was very drowsy on the previous Tuesday. I gave her a bolus dose. So after deviating to the chemist I took her home where I put her to bed at 1050. By 1140 she was awake and alert. On Wednesday she was much the same when a Wild Dog Carer minded her while I was on respite. The water to our village was cut off at 0900 so we spent most of the day at The Soldier's Club. At 0815 I gave her a precautionary bolus dose and again at 1140 when dyskinesias began and shortly after I placed her feet on my knees and rubbed her legs; she felt sleepy but recovered. About 1400 she wanted to go around the shopping centre as well as up and down the strip shopping, after which we were home by 1600. About 1730 she called out "I can't breathe", something she may say every other day or so. She quickly recovers.

Last Wednesday the Carer helped her machine stitch some fabric together to make a quilt. The Carer had not threaded the machine correctly thus the stitching was not very good. Later I saw her picking at the edges of the fabric to cause it to fray. Since the time was early evening I convinced her to leave it until the next day when I would help her to make repairs. When I next noticed on Friday, the whole had been picked apart. Now, the following Monday, she continues to place pieces, pinning them together without getting around to stitching. This may sound trivial to the reader but years ago she was able to complete such trivial work within an hour, rather than investing almost a week getting nowhere with the task. Some time ago she shredded the thick wool like threads of a pillow (or was it two) bought at KMart in order to make filling for another pillow she intended to make. Last week she pulled the pillow under construction apart, the filling went into a large plastic bag for the garbage. When I said we can keep it for later projects she replied that there was "too much rubbish in it", and when I looked, I saw chocolate wrappers, sewing threads and such which I removed. We still have the bag of filling.

Recently she comments about not having "feeling" in the tips of her fingers. Sometimes her left leg is bent at the knee as I help her up of a morning and I need to rub the leg to help it straighten. Once she often complained that her toes were painful unless protected by shoes but rarely mentions that lately. Were these observations on the list of issues I gave the neurologist on our lat visit? I don't remember. The script for the Alzheimer patches has not arrived yet.

Each evening in bed she reads Mills and Boon novels on her eBook reader now mounted on a flexible arm attached to the bed. This is much more convenient to the swing arm mounted on the wall that required me to raise the height of her bed for ease of viewing. The font size is large and she reads slowly, usually allowing the reader to go into "sleep mode" as she dozes off some time after I am asleep. There has been no need to attempt to find watchable shows for her from the numerous subscriptions we have or free to air.