Chapter 615 - Quiet, Stress Free and an Observation

 She declined to have the TeleHealth appointment on Xmas Eve to speak with the neurologist (not that she would have said much) for me to report on the results of her taking one Symmetrel each day. I have wondered what may have been charged for a brief call for me to say that the Symmetrel has not produced any reductions in her dyskinesia. In doctor speak, there was nothing remarkable about the FitBit charts, except for one thing, see below, and that is hardly clinical.

I just realised that the FitBit charts I had printed in the latter half of 2018 with an earlier model FitBit during the earlier  trial with Symmetrel do not contain the daily number of steps, only the bars, so I'm unable to readily compare those charts with the current ones. Well not without a lot of estimating and mental arithmetic. Enough to say the Symmetrel has had negligible effect. 

The following list shows the "steps" recorded of her dyskinesia this last week. 

Date        Steps

Dec 19     21025

Dec 20    24218

Dec 21    33116

Dec 22    20735

Dec 23    23032

Dec 24    7899

Dec 25    23384

Of note is the number of steps for Dec 24 when on that morning I discovered that BritBox now had that old favourite "As Time Goes By" available and we watched quite a few episodes of it. Now, today December 26, she has been watching two Xmas episodes of "All Creatures Great and Small" and I have noticed she has been without dyskinesia. Can concentration on a TV programme minimise dyskinesia? I can hear the closing music to the current episode and another is beginning. I went to check on her, no dyskinesia, but she said she could hardly see the screen so I pulled the curtains  shut before applying Optifresh and Tears Again to her eyes. I queried her whether concentrating on interesting TV programmes gave her any sensations that may ease dyskinesia but I was unable to ask her in a manner that she understood. Mentioning "mindfulness" is likely to confuse her. I will continue to monitor her to see when dyskinesia returns, as I'm confident it will.

We were looking forward to having family down on Thursday, until COVID numbers spiked following the lifting of restrictions decreed by our idiot politicians. Their comments about personal responsibility for wearing masks etc indicates that those people in power do not understand the behaviour of the electorate, the individuals aspiring to "eat, drink and be merry" at these festive times of the year. As I watched the daily number of infections rapidly increase I decided we old farts are just too vulnerable to run the risks, so I rang and cancelled the visit we looked forward to.

As usual, she has had no social contact other that the twice each day visits by Wild Dog carers, two of whom left ginger bread cookies and chocolates for her. Also the once weekly Skype video chat with the volunteer up in Cane Toad country.

Chapter 614 - The Unwashed Crowds

 A smiling woman told me "You don't have to do that anymore!" as I scanned the QR code on the chemist's door. I knew she was smiling because she was not wearing a mask. I replied "I do!". The same from a resident of our village as I was about to enter the hall to check on our mail. That same morning the carer from Wild Dog entered our house without wearing a mask. When I checked with Wild Dog management and our village management both were waiting on directions from higher management. I placed a notice on our front door telling visitors that masks must be worn. Village management later distributed memos stating the state government directions. No feedback from Wild Dog although all carers enter our place wearing masks; none do a QR code scan but I record who is here. On Friday staff and patients at the doctors were wearing masks. The state health minister repeated a statement made at a university that by the end of January there may be 25,000 COVID cases each day. The graph of the state's  case numbers is trending toward vertical as the number yesterday exceeded 2,500. News suggest that northern hemisphere countries are trending toward panic as they enter the depths of winter. Here in GodZone country we are entering the season of pagan celebrations with a flourish, sporting events, wild parties at clubs and pubs, surely a few "musical" (is that what the noise is called?) concerts and of course the Land of the Free interpretation of what Xmas once was, soon to be followed by that great release of energy and emotion because this small polluted ball of rock has once again returned to an arbitrary position in space. The other day I read in a learned magazine that it will be incinerated by the sun an about 600 million years; in the scheme of things that sounds almost too soon. Meanwhile, back to the present, we Old Farts need to avoid catching whatever flavour of COVID will come our way because at our ages I doubt we will endure its ravages to discover how "Long COVID" may impact us. At this time I am almost proud that we have avoided any signs of common cold and 'flu in this calendar year; a first for me ever and probably because I have not mixed with the great crowds of unwashed.

After an hour she as almost completed folding the four grocery bags in which our groceries were delivered yesterday. She began yesterday, giving up when unable to fold the second bag, the first having been folded but not held in place with a rubber band. She seems to lack a sense of how long such a simple task takes her; no sense of frustration or annoyance.

Although I used four screws to hold the soft seat on her commode in place so that that part of the seat did not remain stuck to her bottom, there was danger that her skin might be damaged so I now wipe eucalyptus oil (suggested by the nurse consultant at West Beer to remove sticky tape residue from her tummy) around the commode seat. Masks other less pleasant odours as well. Now I find that as she is lifted in the sling lifter from the commode I have to ensure that she does not swing forward a few centimetres otherwise the prolapse sometimes "wipes" the lip of the commode seat.

She continues to take a Symmetrel at breakfast each day. I'm unsure whether her dyskinesia is lessened due to the Symmetrel; I have yet to compare current FitBit results with earlier ones. As I often say, if I can't measure it then I can't fix it (that is, know that symptoms have improved).

I had decided to give her the evening meal in bed after the Wild Dog carer has gone. Mainly to avoid rushing about to get the meal over and done with. She prefers not to eat in bed, "I can't get comfortable" she says. In a moment of sheer inspiration in the shower this morning I decided we will have our main meal in the middle of the day. This little Pooh Bear  is unable to grasp an obvious solution sometimes.

As a change each night from hearing the Betty Neales' book readings over and over (although she doesn't seem  to remember the titles or plots of any of the books  she hears; each seems to be "new" to her and doesn't recognise when I add a new one to the collection) I have been playing Xmas carols found on You Tube for her. The "A Better Visit" finger painting exercises still interest her, even tough her fingers have a tendency to bump things and the tablet enters functions she should not play with.

Chapter 613 - Odds and Ends

 Some time ago I mentioned that she had spent days pulling threads from a length of wide lace attached to gold coloured  ribbon band. Days and hours upon hours. At one point she had difficulty breaking the threads so I gave her a small pair of scissors which were then used to pick at the ribbon creating more fine threads. She is unable to tell me why she does this to pieces of fabric. Below is an example of the work she does for no obvious purpose; the fluffy residue eventually goes in the bin or attaches to our clothing like brightly coloured cob webs.

A few days ago I took her to an appointment with a surgeon to discuss her rectal prolapse. Although a pleasant person he was disinterested in her medical history and asked very little about her current condition. I had showed him photos that are vivid enough I suppose. His message was quite plain; he stated what her age was, he asked her bluntly whether she wanted surgery to which she answered "No". He told me the prolapse needed to be pushed back in otherwise it will dry, bleed and ulcerate and should it not be possible to push it back then it was to be considered a hospital emergency. He said surgery would result in 2-3 weeks in rehab. We left with me taking the hint "at her age avoid surgery and cope with the current situation". So I now wear gloves after she uses the commode and during transfers to bed.

I am very relieved that I took her to see the specialist because I have rid myself of a guilt feeling of not exploring all avenues to care for her. Although I felt somewhat thwarted that I was unable to give all the vivid details I intended (these professionals should give an old bloke a hearing to get things off the chest), other than photos which are very easy to take when the patient is seated upon a commode shower chair. Interestingly, she does not object to me presenting doctors with such graphic evidence, such details are probably of little concern to someone with serious cognitive decline. I show images to avoid a doctor asking her to hop up on a couch (which she is unable to do anyway). But I am very relieved that she shook her head and said "No" when he asked her directly whether she wanted an operation. That was all she said during the consultation.

Yesterday morning she displayed a different behaviour to usual; I had got her up and on the commode before  giving her breakfast which she didn't want (unusual), then she became a little stressed, her legs were dyskinetic (not unusual) and when I asked she said she felt strange and tight. She agreed to return to bed before a carer came to shower her. She went to sleep, waking mid morning when I showered her then gave her breakfast. After breakfast the same symptoms returned so I returned her to bed again and by lunch time she remained asleep. I took her blood pressure, pulse and oxygen readings, all a little low yet OK for someone in bed asleep. She woke refreshed about 1230.

She continues taking one Symmetrel after breakfast. I doubt Symmetrel has much impact on her dyskinesia. I mislaid the FitBit I attach to her right leg so my attempts to track the bouts of dyskinesia and compare with that taken in 2018/19 have come to nothing so far. I found where I had absent mindedly left the FitBit so her dyskinesia is being monitored once again.

I recently attended a Zoomed presentation about dementia activities in the home. A free tablet based game application called "A Better Visit" was mentioned. I downloaded the application which consists of a number of activities of which she found finger painting exercises satisfying; a finger rubbed on the screen causes line drawings to become coloured or another where a blank screen fills with a photograph as the screen is rubbed. Other more complicated activities did not attract her interest. As always, she has a knack of escaping from an application into screen management activities. She does it so easily without knowing the implications. Anyway, she found some games for pre-school kids (I must have installed it ages ago) one of which consisted of extremely simple jig saw puzzles, I think the simplest consisted of only six pieces, with options to display piece outlines and/or faint background images of the scene to be built. She had difficulty placing the six pieces, demonstrating how much her cognitive abilities have deteriorated.

This afternoon I took her outside to look at the plants in our raised garden bed. As always she cannot resist "pruning" plants of dead leaves. I let her do it as she wasn't doing any damage. Later I found her rubbing her lower arms because they were itchy. Calamine cream cured the itchiness. The warmer weather has started to cause bright red rashes on her legs and tummy as in previous hot weather.