Chapter 624 - Another Issue with the Duodopa Pump

I sent a note to the West Beer nurse asking whether other Duodopa patients accidentally activate the buttons on their pumps, and whether there is a simple way of prevention becuase my piece of Tupperware is not an ideal solution for the problem.

About 1930 last night she asked for the loo, which now means the commode. As I set up the sling lifter for the transfer from wheel chair to commode I discovered Duodopa solution on her left leg and the "bluey" mattress protector she sits on in the wheel chair. The threaded coupling between the cassette tubing and the stoma fitting was cross thread allowing the solution to escape. I had last handled  the coupling when I routinely replaced the cassette at 1600 so I assumed I was at fault, even though this was the first time such a problem had occurred in six (?) years. Then she told me she had  "tightened" the coupling and thought the leak had stopped. She had not called me because I was on the phone at the time. I now wonder whether she had undone the coupling herself then attempted to reconnect it. She remained silent about that. I will ensure the coupling is screwed together more tightly in future.

When I checked on her at 0600 this morning I found her bed light on and she was uncovered on the bed and not even a pillow beneath her head. All such things had been tipped over the side rail on the far-side of her bed. When asked why she had done that she replied "I was trying to get away" but was unable to say from what.

I have started giving her one teaspoon of benefiber again in her breakfast fruit juice because her poop is now only soft and very small pieces.

Chapter 623 - Eating Matters

Early this afternoon when I checked on her, her feet were hard pressed against her DVD storage rack. She was stressed and sweating from the exertion of strong dyskinesia in her legs. As I pulled her wheel chair backwards and away from the corner I noticed both her hands grasping the Duodopa pump. When I asked why she was holding the pump like that she replied "So that it won't fall on the floor" then I saw the small screen on the pump indicated "DOSE" and her left thumb was resting on the button labelled "EXTRA DOSE". She told me she was unaware that she had pressed that button. Pressing that button while  the pump is running delivers an addition 2mL into the patient before the function is disabled for a number of hours. So my suspicion that she may turn off the pump by pressing the "STOP/START" button while holding the pump has been confirmed. (And I confess that at times I have forgotten to restart the pump following valid changes in operation) A few days ago I cut a rectangular section from an old Tupper Ware container and placed it inside the pump bag to prevent accidental button presses, while still allowing the pump screen to be seen. Although inadvertent button pressing was prevented, it was inconvenient to withdraw the piece of plastic whenever I needed to perform normal and valid pump operations, so after a day's trial I discarded the piece of plastic. I need to experiment further.

She experiences increasing difficulty chewing and swallowing food; any thing that is dry or crumbly, anything that is lumpy, anything that  forms balls of "dough" during chewing, anything that is "stringy", anything that is pellet shaped, anything that is diced, fruit skins, "skins" of batter, any food needing to be chewed. This general list includes specific items such as many biscuits, porridge, vegetables not cooked into mush, fruit cake containing sultanas, flaky grilled fish, soft bread, sticky date puddings, pineapple, green peas, small cubes of soft avocado, grapes and cherries, batter on fish, grilled red meats, chicken.

Food unable to be chewed well enough is either removed from her mouth with her fingers or spat into tissues and left on the plate; her hands often need cleaning. She usually needs a soup spoon to shovel food into her mouth and I frequently am the one needing to do the shovelling. Her clothes, wheel chair, Duodopa pump bag and the like usually catch most of the droppings. Quite often I place an apron on her at meal times. Scraps of food are found in crevices in the wheel chair or on the floor.

Her breakfasts have changed from toasted banana bread, or melted cheese on toast, to Nutri Grain to now porridge that comes in small sachets of suitably flavoured finely ground contents, although I doubt this will last because she is asking for copious quantities of brown sugar on top and once the porridge cools and thickens even additional milk and heating it is destined for the green bin. Also diced fruit and fruit juice.

Lunch is usually a banana and peanut butter smoothie (made with yoghurt, honey and four or five scoops of Sustagen) in a large glass, one or two Tim Tams and grapes and cherries (skins not swallowed)

Evening meals have been cottage pie, or lasagne or fish with vegetable of various types, all delivered frozen of course. I do not cook! Problems mentioned above have had me resort to ordering a variety of soups hoping that such will be nutritious and appetising enough for her. She enjoys dollops of sour cream in soups. I often give her peeled and diced tomatoes and diced very soft avocado sprinkled with garlic salt and lemon juice in place of conventional vegetables. Sweets during this season have mostly consisted of diced mango and ice cream.

Chapter 622 - Illusions, Delusions and Hallucinations

 As I went to tell her I was about to walk up to the hall to check for mail I noticed she was fiddling with a notice from the village management. It was printed on pink A4 paper and because it had been left on her adjustable table, there were some food stains on it. "I'll put that in the rubbish" I said as I reached for it. "No" she said. "Why not?" "It's the pattern for what I'm knitting" she replied. I left the paper with her, and asked whether she wanted to fold some of the Coles delivery bags. "Yes I will." The folding task may take her up to an hour to fold one of those plastic carry bags into a square perhaps 10cm square around which a rubber band will be placed to hold the shape. These used to be given to a Wild Dog carer to pass onto another care client who used the bags to hold used incontinence pads and pants for disposal. I suppose we could do the same rather than hand them back to Coles at the next delivery. I buy light weight kitchen bags from Coles for the same purpose. What's a few dollars here or there?

In the recent past I bought a bundle of cheap towelling hand washers. She found that if she picked at them long enough she was able to pull out individual threads. A similar pastime to what she once did with short lengths of ribbon. She spent several days demolishing one of the hand washers before deciding to bin it. In similar manner she will find loose threads in hems on clothing and that I must discourage. 

She has not entered her sewing room in ages. Perhaps because she tended to get her wheel chair into tight positions and that stressed her, initiating dyskinesia. Anyway, her not going in there looking through boxes and drawers to "find out what was in there" saves me the chore of stuffing everything away out of sight.

I am frequently asked whether "F" and "N" (her sisters) are still here or yet to arrive. Only those two. There are often nameless adults and children outside. She sometimes asks me what an object of a certain colour may be to which I may answer that I don't know or can't see it; neither answer bothers her.

She seems disinterested in TV programmes although I frequently find something light and entertaining for her to watch although she is never bothered if the streaming service times out or I ask to watch news instead, although I tend to wait for the end of an episode. Most often I select items from BritBox. She prefers to have an audio book playing once she is in bed but I sense she doesn't follow the plot closely because she seems unable to recognise how far the book reading has progressed when I restart the play back on the following evening and she is not bothered should I muddle the playback and start another different book. The books she prefers to listen to are by Betty Neales and the characters are virtually identical in every novel, English nurses and Dutch doctors. I was buying another book as she finished listening to each one but after she had a collection of 15 or more I discovered that she did not mind hearing a book over again. She is not bothered where I stop a book reading each night; I would ask to stop a reading at the end of a chapter and nowhere else! Music with a strong beat bothers her (possibly because of dyskinesia synchronising with it) but she seems disinterested in having any other type of music playing in the background. On good days she may hum to herself, although my tuneless ear fails to recognise what she may be rendering and at times I have asked what it is she hums without a meaningful response.

Crosswords and like puzzles no longer interest her. Several years ago we used to buy puzzle magazines as well as embroidery and quilting magazines on our regular Sunday shopping trips until she lost interest in them. Then one or two years ago I subscribed to the two puzzle magazines she once compared results with her mother by telephone and for awhile she seemed interested but some six months ago she asked me not to get them any more. Last year I bought some scrabble sets for her but she no longer understood the strategies of positioning words and making words longer that three letters seemed beyond her. I failed to persevere to encourage  her to play and as with other games, she gets more pleasure from packing away the pieces into their boxes.

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.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             

Chapter 620 - Began a New Notebook

 The day following my last post I began a new A5 size spiral bound notebook recording daily events in our sheltered lives. I filled the nominal 300 pages (sometimes I scribble shopping lists and such like on pages that are then ripped out) with notes from 23 October 2021 to 22 January 2022 with handwritten scrawl, always difficult to read but growing worse each year now, so with abbreviations and spelling errors (no intelligence underlines with red) I imagine much is unreadable by others. Some words may be highlighted or in block letters or perhaps underlined or surrounded with lines in order to show something notable. Pages are dated and lines show the time an event occurred. I note any issues that impact on her health and well being, especially any mistakes I make, or think I made, including things I forget to do.

For instance, at 0615 of Friday 28th January I discovered her Night pump was not running, although it was turned on. (West Beer provided two pumps last September, Day pump to run 0600 to 2200 each day, replaced by Night pump at 2200 each night). I had made a note on the previous night "2200 Replaced DAY with NIGHT", the assumption being that I started the pump. However, she sometimes holds a pump as a nerd holds a smart phone, with both thumbs on the screen and in her case, her left thumb is on the button to "stop" the pump, said button needing to be held for a period of time  while the pump sounds an alarm and symbols roll across the screen. Although I have often noticed her holding and inspecting the pump in this manner, I have not known her to press the button and turning off the pump. So I accept that I probably forgot to start the NIGHT pump after turning it on. She was very lethargic, zombie-like, asleep but restless then woke with dyskinesia at 0825 so I got her up and so began an uncomfortable day for her. At 1330 I convinced her I should lay her on her bed. As I pushed her wheel chair towards the bedroom door she fell forwards out of it onto the floor. After checking her for injuries and pain (there was a pain in her left arm that hardly bothered her) I used to sling lifter to lift her and then laid her onto her bed. After intervals of sleep and dyskinesia she asked to get up into her wheel chair at 1600. I dressed her in a nighty. the decided to keep her in bed. I fed her part of an evening meal at 1715. Laying on LHS, back and RHS were needed to minimise dyskinesia, by 2000 she asked to listen to a library book. I fell asleep, waking at 2140 to find her very dyskinetic, breathless, sweaty while attempting to pull out the seam on a pillow. I sling lifted her onto the commode and gave her 8 hydralyte tablets in 800mm of water to compensate for her sweating, then onto the foot pedals for a short while before putting her in front of the TV in the back room to watch episodes of Midsomer Murders until midnight when I put her back to bed. About 0130 she was asleep without dyskinesia (yes I know but in her case she may be "asleep" when her legs are dyskinetic.) I checked her several times during the remainder of the night. The next day, Saturday, was on the bad side of being a reasonable day.

I suspect she is hallucinating much more than she says. At 0230 26th January when I checked on her I found hert awake without dyskinesia when asked "Who are all these people?" At 0845 this morning as I was about to get her up she asked "Have F and N [her sisters] gone?" She has asked that question before. She sometimes mentions seeing people outside.