Chapter 450 - How Long is a Tether?

This has been a very trying week. Matters became very trying on Monday when she decided the large glass dish on the wheeled base that supports the large Peace Lily by our back door must be replaced with something more appealing to her. She pulled both glass, metal and plastic trays and plates from cupboards, demanding they be positioned beneath the lily, none were suitable, too small, made of iron plate (baking dishes) or brightly coloured plastic, some with holes so not water-tight. Eventually her activity turned into a need to re-sort the contents of cupboards, sideboards, linen press and then the fridge. Small items needed to be place in square and round Tupperware like containers, then placed on shelves, items were re-positioned on different shelves (so that she was able to reach them from her wheel chair - fair enough should she really need them, but mostly not). All sorts and shapes of cake tins were moved between cupboards and she began contemplating cake making; these items need throwing away. Some kitchen tools went into a large round container which I placed in the cupboard beneath the BBQ. Partially empty bottles of stuff, jams, pickles and the like were corralled into plastic containers in the fridge; I flushed most of these down the kitchen sink and recycled the bottles, not caring about the expense of wastage. Many of those items were to give more taste to her meals and we can buy more.

A couple of weeks ago she bought some balls of cheap wool at the Reject Shop. She began knitting something and after a few rows had the balls badly tangled. Last weekend friends visited so she was helped for several hours to untangle the wool back into two balls. Then on Thursday she had eye tests at Hot Air City Uni, as part of a research effort into early diagnosis of PD (some months ago she completed some on-line pattern recognition tests for this same research). During the drive to the Uni she decided to wind those same balls of wool into one ball of twinned threads (why I did not ask). The task was half finished by the time we arrived then continued on the drive home. The result is easily imagined! Once home again she began the untangling job all over again, but this time once she had a few metres free she cut off those lengths to make many small balls. I told her to throw the whole lot away, so this morning while shopping another 5 balls were bought.

By the way, the eye tests show that the thickness of her retinas are thinner than expected, the left being the worst.

Each afternoon, usually by 1500, she suddenly feels "queer" (in the proper sense of the word) needing to lay down after going to the loo for a piddle. There is an urgency about this. Usually she feels much better, is more mobile, after an hour's sleep, yet she usually asks to be taken out the back to place her feet up on the recliner next to the TV set. There she tends to remain, later eating her evening meal until just before a Wild Dog carer arrives to assist her to bed. Of course, the will be 2 or 3 visits to the loo.

Although I was hardly up to the task, I took her down the street shopping at about 0900 today. I pushed her around KMart's new layout, although too quickly for her liking and afterward needed to sit on a bench for awhile, before going across the street to the Reject Shop, which was closed at that early hour on a Sunday morning. Anyway, we returned after our supermarket shopping to buy the wool mentioned above. In between, I took her to the newsagents to by a craft book and magazine which she will browse but probably not make any of the designs, then sat in the coffee place opposite for the necessaries. I had loaded a new book into my reader before leaving home; at least I can still leave home prepared.

The replacement pump supplied by West Beer PD Clinic faults with a "battery disconnected" like message if the Start button is held too long at startup. In consequence she becomes confused after showers when she usually restarts the pump herself. Her declining cognitive skills are becoming more obvious and several people acknowledge that they see the same symptoms. What I see are compulsive and obsessive actions, eg., cupboards and knitting mentioned above, counting and recounting coins, trimming seams of clothing and patchwork endlessly until the object is almost destroyed, unable to remember names of Wild Dog carers (much worse than the average oldie), unable to say whether her right or left foot/leg bothers her (rather says "this one" or "that one"), possibly unable to follow instructions, such as knitting, for very long before becoming confused, making errors that require "corrections" and cause chaos. And other signs.

I suspect her right foot is "dropping" so I will attempt to get an appointment for her to see local physio AB.

Chapter 449 - The Carnival Continues

We were driven in the rain to West Beer to see Dr F in his rooms last Thursday. A nerve conduction study on her right arm and leg when we got there. Since there is little opportunity given for questions or comments, I wrote  a number of observations and a question. He said they were "good" observations and in response to my question he asked for her Duodopa pump settings to be changed to: Morning Dose 8ml; Daytime Rate 5.2ml/hr; Nighttime rate 2.2ml/hr. He queried whether I was able to change the settings and whether we were going down to the hospital clinic to have the port fittings replaced. Apparently others have this done after visiting him; we had never been advised to do so. Such maintenance on her pump is only performed when we attend the six monthly scheduled clinics; the clinics we were told last visit were intended to be "in and out affairs". And at consultations with him we have negligible time to have a discussion before he stands, rushes to the door saying "Take your time leaving"; we are puzzled that he always behaves so, does he need a piss every time we see him?

We left home at 1030, arrived at West Beer at1300, almost straight into the nerve conduction study, an awful long wait then in an over crowded waiting room (I always forget to note how long we wait), about 15 minutes with Dr F, make another appointment, into the car, rain and awful traffic, no more than 1/2 an hour at MacDonald's (we had had no lunch) and arrived home at 1830. This day out will cost her Level 4 plan about $800.

Friends came down on Saturday, stayed overnight, returned home Sunday afternoon. On Sunday morning I was woken by door knocking, I had slept in until 0750 when the Wild Dog carer arrived to shower her. In consequence, I fouled what I had hoped was to be a smooth transition to the new pump settings.

The following is a redacted (horrible word used so frequently by a horrid alien government) version of my "observations" for Dr F.

Chapter 448 - Muddling Along

On Tuesday 28th of February I raised her daily dose from 4.9 to 5.0 ml/hr. For the next week or so she experiences "over heating", a couple of soluble Panadol in a small quantity of water seems to reduce the problem. She sweats excessively, says the bedroom wall fan blows hot air, usually needs a small personal fan as well as the wall fan, rests her head on a cooling pad. Mention this problem to any woman over 40 to be given a vivid description of such symptoms and they assume she is going through the same phase! What, at 74? One of these days I will be very rude. I became concerned last week about the condition so had her use her infra red temperature monitor in her right ear; At these sweaty times her body temperature is usually 35.9C, the highest measured was 36.5C, the lowest 35.6C. Wiki says the nominal range is 36.5-37.5. While she was in NatCap for a colonoscopy last Wednesday the nursing staff became concerned and puzzled about her sweating so much but were unable to locate a pedestal fan for her. Excessive sweating, feeling overheated and differences in skin temperature between her two feet have been mentioned in the past to doctors without any advice given. I believe the problem is called dysautonomia, a problem of her autonomic nervous system. We see the neuro at West Beer this week so I'll attempt to get an answer.

There were no negative findings from her colonoscopy. The cleansing procedure was performed in hospital the previous day; for which I was very grateful. Unfortunately, insufficient attention was given to her needs so a nurse had to clean a bed full of shit and give her a shower. Also, her glaucoma medication, Ganfort, was not administered on the mornings of Tuesday and Wednesday; unless the hospital used their own supplies, for the sealed package containing the phials returned home still sealed.

After returning from hospital on Wednesday the Duodopa pump failed with an error code of 1814 which may be a motor error according to info I found on line. The spare pump is now in use. I mailed the faulty pump to the distributor and West Beer PD clinic will send a replacement.

I could write about obsessive compulsive issues I see in her, but perhaps another time. Writing this stuff is depressing.