Chapter 621 - My Motivation to Write Has Been Lost

 Writing this blog is becoming harder; I procrastinate writing it because I tell myself that I have no wish to re-live the experiences of the last few days or weeks. A word I learned from a Cognitive Behaviour Therapy  (CBT) course is "ruminate", the thinking/remembering past events and activities in an endless repetitive manner. And in my case not the pleasant enjoyable experiences. And that is what this blog has become for me. At its commencement a way of describing to others our experiences in this long PD journey, at the time a way of describing our journey's "highlights" without anyone interrupting with tales of the experiences of their great aunt Lizzy who must have had PD because her hand shook.

Each time a chapter is competed and "published" I experience a sense of relief of a burden lifting, a burden that returns within a week or so. So here I go once more, looking for my temporary fix.

Since I began using the sling lifter to move her between bed, commode and wheel chair I have tended to stop her Duodopa pump and detach it from her in case an accident happened to cause the pump to swing, dangling from its tubing into her stoma, although the pump is suspended by means of a strap over her head. So as soon as possible after the move is completed I must reattach and start the pump so that her medication is not interrupted for too great a time. For instance, the pump must be stopped and physically removed during showering each day for about 20 minutes. So her pump is stopped and disconnected at least 4 times each day. I noticed that I sometimes tended to re-connect and re-start the pump following a cautionary interruption. An alarm was needed to remind me to do so. We have a number of Amazon's "Alexa" devices throughout the house so a convenient alarm was to say "Alexa, set an alert for 15 minutes" and after 15 minutes elapsed the Alexa device will sound an alarm that sounds to me like "Mumma"  being repeated over and over (I'm sure I could change the alarm if I tried). I then need to say "Alexa stop" to cancel the noise .I once said "Alexa shut up" and I was told "I don't know that"; a very polite AI device.

Anyway, I sometimes forget to request an alert from Alexa and in consequence I may not reconnect the pump and start it; sometimes the pump is connected but not started. Sometimes I find her holding the pump as if it is a small game console, her fingers at the rear of the pump and her two thumbs positioned on the face of the pump, the left pressing on the "Start/Stop" button and the right on the "Prime" button. Only the "Start/Stop" is active during normal pump operation.    

On Friday 11th February I completed the usual changes at about 0600: Replaced the Night pump with the Day pump with a new cassette attached, turned on the Day pump, started the Day pump then initiated the Morning Dose. At 0825 I checked on her to see whether she was ready to get up. Hearing the pump sound one of its warning beeps, I checked the pump status to find it stopped. Now if I had completed the set up procedures correctly on the Day pump, including the Morning Dose, then the Morning Dose would not be operative since it is disabled for about 20 hours  after being pressed. So I pressed the "Start/Stop" button and once the pump was running I pressed "Morning Dose" to find it disabled as I expected if a Morning Dose had been given at 0600.  Therefore I had correctly set up the pump   at 0600 and I had to assume the pump was either faulty or she had leaned on the face of the pump with her elbow, for that is where I found her elbow when I checked on her. So I must assume that she is able to turn off the pump by holding it too tightly in her hands.

A similar event occurred on the following Thursday, 17th February. A normal start to the day except I collected a urine sample from her to take to Pathology  before lunch. Although she seemed somewhat sleepy, at 1300 she ate some grapes and cherries for lunch but did not touch the peanut butter and banana smoothie I make for her. She was watching a BritBox documentary on Royal Patronage. At 1430 I heard an alarm beep from her pump, which I found Stopped, she asleep, making noises in her throat then her arms spasmed. Her eyes were open and she was in what I call "Zombie mode".   I started the pump and gave her a bolus dose. She alternated between bouts of sleepeiness and dyskinesia     until about 2030 when I put her on the commode and then to bed at 2130. She was ringing wet with sweat. Although she drank some hydralyte she was disinterested  in fluids. She had several hydralyte icve sticks which were more to her liking. I made and taped to the fridge a check sheet to note when I check that the pump is running; although now I'm forgetting to do hourly checks. Such is an old timers mind. I intend to place a piece of translucent plastic over the face of the pump but inside the bag that holds the pump; the plastic has not been found yet that is thick enough to prevent the pump buttons being depressed yet clear enough to see the pump screen. Anyway, I suspect I was to blame for this incident by not turning the pump on after her shower at 1000 on that day. 

I must stop typing, I am too slow with too many interruptions. There are other matters to speak about, but not now.