Chapter 580 - If We Only Had Time

 After our morning out I had been reclining out the back, reading, until I forced myself inside to write these words. Checking on her in her sewing room on my way through I found her chopping, or hacking, with small blunt scissors the cover of one of a pair of small pillows we bought this morning, pillows with a silky faux fir, inches long on one side. She was unable to explain why she was doing this to the pillow. As usual when I find her wrecking an object she is unable to reply when I ask "Why are you doing this?" she sits quietly in her wheel chair with her head lowered but on this occasion she asked for "Toilet". There is no point in becoming flustered, frustrated or annoyed, although I am saddened, so I wheeled her to the Sara and transferred her to the loo, where she almost immediately passed an enormous turd of an equivalent size to one of the two she did (unknowingly) when I transferred her onto the commode this morning after getting up. In a way, rather pleasing to me because the turds are no longer large marbles loosely stuck together. More about this later.

I cannot remember the last time I took her "shopping" on a Sunday morning; definitely before COVID began. At first I was pleased not to take her because the activity was so tedious for me, pushing her in her wheel chair, while she enjoyed touching, feeling fabric, clothes, handling books, small plastic containers; all those things one sees in what I refer to as "junk shops". If only she was able to propel and steer a wheel chair by herself while I found a place to sit and read a book such outings may have been more pleasant for me. She was not bothered by keeping away from the shops. I began buying fish and chip lunches at the drive through section of the new cafe in our neighbourhood, eating down by the river, until on one or two Sundays her leg dyskinesia bothered her so much I had to bring her home. Then I simply stopped suggesting we go out. Yesterday a Wild Dog carer mentioned that the well known junk shop that had closed over 6 months ago was doing quite well under new management. Actually, I read in the local rage during the week that the manager of the place had taken over the business in his own right and as I saw this morning was doing a good job of it. So without pestering her I convinced her to come with me (I had to dump the last month's collection of used Duodopa cassettes in the sharps bin at Community Nursing) and have a quick look at the revitalised junk shop. I think she enjoyed herself, buying the two small pillows mentioned above, some metres of blue fabric for no obvious reason other than she liked it, several tea towels. I bought a 2021 desk diary. On the way home I only bought 1 box of fish and chips (for she wanted no fish, only half the chips), two slices of cheese cake and a milkshake for her, a coffee for me. She went to sleep for awhile before eating then again afterwards. She had enjoyed herself but whether enough to go again only time will tell.

Some weeks ago I took part in a Zoom'd carers meeting when the topic was incontinence. Constipation (I see this as the opposite of incontinence) was discussed along with graphics of the resulting faeces (I do know the technical word) and the most serious constipation example was graphically exactly what she has produced for a number of years, professionals having told us more water, fibre and a laxative being required to resolve the issue. Three years ago LAX Sachets and Benefibre were prescribed. The "end" product did not change, told the professional this, discontinued the LAX and tried some other laxatives, of which one caused messy problems and another she was unable to swallow. Anyway, I found two boxes of LAX in the cupboard and wishing to read the detailed leaflet of directions which should  have been within the boxes, but were not, I went on line to find same and stumbled on a Product Recall statement, which stated that the instructions with certain  batch numbers directed that a sachet be mixed with 1 litre of water, rather than the correct 125 ml (I think that is the amount) so no wonder the time she used to take to swallow a litre somewhat nullified the LAX's effect on her bowels. I puzzle why neither the prescribing doctor or the chemist failed to alert us at the time the scripts were dispensed. Now with the correct quantity of water the LAX is having an appropriate effect.

I am concerned that there is a lack of enthusiasm for "close" relatives to take over my self-imposed task of recording our family history; one day soon, several years at the most, I will not be around to maintain the records. Then many books, certificates, photos, correspondence etc will disappear into a garbage skip. Even the records digitised and stored on hard drives and on line will be lost as formats, platforms and software providers change over time. There are tasks I have yet to complete. I will enquire what happens to private on-line data currently protected by subscription, perhaps I should publicly store as much as possible on line and to hell with privacy considerations.

A recent email from the USA Parkinson's Foundation tempted me to participate in a mentoring study with others dealing with Lewy Body Dementia (LBD). Almost 20 years ago, when I suspect LBD was becoming a topic of interest to academics, her then neurologist had her take a scan which showed nothing "remarkable" (that interesting medical term). To participate in the study I began answering a questionnaire which concerned me more than a little in terms of privacy, coming to a halt when attempting to enter a preferred contact phone number; the damn thing want a standard USA 10 digit (or was it 12?) phone number and variations of my home phone number area code and country code were unacceptable. So being an "alien" (in the sense we locals were called when working at a couple of sites in my own country) I back-tracked through the questionnaire,  deleting as I went. Anyway, I researched LBD a little and found in a Mayo Clinic site that Rivastigmine, otherwise know as Exelon, and some others "work by increasing the levels of chemical messengers believed to be important for memory, thought and judgement (neurotransmitters) in the brain. This can help improve alertness and cognition ...." Perhaps this is what her current neurologist meant by "Exelon may help her to be brighter" when I asked him why he prescribed it.

I just returned from rescuing her from out on our rear patio where she was unable to steer the wheel chair out of a congested space, pieces of flower stems in her hand and on the pavers, obviously having found "dead bits" in need of removal.