Chapter 585 - Attempting Mindfulness, Again

 At least a year ago I paid for a UK mindfulness course from which I benefitted at the time; there  were two leaders, one male the other female. I found the male voice more satisfying. Segments were downloaded to PC and phone to provide leadership in the meditation processes; but it was always easier, more convenient,  to become involved in other tasks. Only once did  I attempt walking wearing a blue tooth ear bud. I failed to cultivate a good habit. I attempted other online mindfulness exercises, none of which appealed. Several months ago someone on a Zoom dementia support meeting someone mentioned "Insight Timer" and "Calm" as excellent online sources. Yesterday I had a good look at Insight Timer, listened to a pleasant voice speak about habits, mentioning "procrastination" (my great failing) so this morning I returned to hear the same person give his first of a 10 day series of recorded mindfulness talks. And as expected, to continue I needed to subscribe, so I did, discovering that meditation/mindfulness  material was available to me live as well so I sat in on the tail end of a session. Not being interested or involved in "social" media I wonder what other universe I've stepped into!

Not hearing of the results of the swab of her stoma sent to pathology last week, on Tuesday at 1145, even though she was not wholly willing, I took her to see her doctor who had the results. An antibiotic was prescribed. The doctor did not seem bothered by the redness around the stoma or its appearance and that reduced my anxiety somewhat. I am to continue dressing the stoma each day after swabbing with saline solution. Now on Saturday I think there are signs of improvement.

Prior to the Tuesday's appointment I had sent a message to the organisation providing the Skype chats for her, to say that we were going to the doctor. The person who chats with her called earlier so they shared some conversation. Perhaps because of my presence she seemed inhibited, unable to carry their conversation, so next time I will absent myself. Perhaps I will chat with her about some topics before hand. However, in listening to their conversation, I realise more than ever that her recollections of our time away in the West are very hazy and mistaken. Or perhaps mine are? After all, our memories of those times date from 20 to 30 years ago, so near yet so far.

About a week ago she disembowelled one of the pillows on which she often placed her legs and feet on the recliner near the back room TV set. Simply to make two smaller pillows. Small pieces of foam are difficult to collect from the carpet and place in a plastic lidded box. I could have bought filling for her.

The image below is of a pair of slacks on which she found loose threads on the hems of the legs. In picking and pulling at the threads the fabric was ripped and tattered to the point a few days ago she decided the slacks should be thrown out. Before doing so I hung them on the clothes line to take some pictures. Quite some time again she was a skilled sewer, knitter and hand embroiderer. I her teen age years she made her own clothes and hats. Yes, hats, for they were in fashion way back then.

Chapter 584 - Making Mistakes

I do not like admitting failure, making mistakes and errors. Recently I have often omitted to restart the pump after replacing the cassette or when reattaching the pump following showers. On those occasions she sometimes realises the pump is not running or I have checked the status of the pump simply from habit. Yesterday was different; I forgot to replace the cassette while she was having her morning shower. By mid-afternoon her dyskinesias became vigorous, she was uncomfortable and to keep an eye on her watching TV (although she was disinterested in doing so) I set up a camera to monitor her. Late afternoon I found her asleep, unable to be woken. In checking the pump I quickly discovered the cause, the cassette was empty. There is no alarm to indicate an empty cassette, the pump continues to cycle, making its normal pumping sound.. This has happened before when I have delayed replacing the cassette near bedtime and the cassette has run dry just before I got around to its replacement. On this occasion she was in a coma like state so I replaced the cassette and gave a bolus dose before lifting her into bed. Later I gave another bolus and replaced her incontinence pants and re-dressed the stoma. Then as she was "waking" I transferred her back to the wheel chair to have a light evening meal of soup. She was disinterested in returning to bed until 2200 when she asked to lay on her side. Several times during the night I found her awake, her light on reading a novel.

During lunch yesterday she choked on a piece of what I call "sticky bun", a blueberry filled bun made of small scroll shapes that she eats with a little margarine, quite an effort to dislodge the gooey piece. This morning at breakfast the same happened with a crumpet covered in melted cheese. We will need to take extra precautions with dough consistency food stuffs which have not bothered her before. Only nuts, biscuits, fruit skins, chunks of meat and leafy vegetables have caused her swallowing problems until now. Everything needs to be "soft". Not much left is there?

The stoma continues to worry me. Several weeks ago the pump which has always sat over her stomach irritated the stoma by pressing against the white triangular gadget attached to the tube, probably because of her need to clean objects close to the floor and to pick up fallen items. A week ago I began protecting the stoma with a rectangular piece of non-stick dressing beneath the triangular gadget. The area around the stoma has remained irritated, so on Thursday I requested a nurse visit from Wild Dog Carers; the nurse came and late in the afternoon took a swab of discharge away for pathology. I rang yesterday wondering why there had been no feedback and was told to continue my procedure until Monday. Each morning I cover the stoma area with Glad Wrap sticky taped in place to keep the area dry during showering.

We once had a should harness bag for the pump that she found uncomfortable during the early days of using a Duodopa pump. Unable to find that bag I rang Abbvie for another; unfortunately what was sent were two standard standard bags so I need to call again. However, the helpful person had suggested a vest with a pocket attached for the pump and this she finds ideal and comfortable, although she does not wish to wear it all the time because she drops food on it. After several days of use I do need to wash it  so I will ring again and ask for another.

Last Tuesday she enjoyed her first Skype chat with a volunteer on the supplied dedicated tablet. Although I did not remain present all the time the exercise appears to have been successful.

Chapter 583 - How Not To Care

 This morning began well at 0610 when I changed the flow rate from 3.2 to 7.0 and initiated the Morning Dose as usual. She did not wake, although her feet kicked a little for a few minutes as she became partially conscious. I began treadmilling while being entertained by a Great Courses lecture. She pushed the bell button hanging from the monkey bar over her bed at 0640. She needed the loo. Transferred her to the commode then onto the pedal machine where she had her, now regularly, laxative powder in a small quantity of water and 4 hydralyte tablets in a bottle of water. She was quite good when the Wild Dog carer arrived at 0750. The heat rash on both legs was still present this morning so the carer applied Savlon to the areas around each knee; I doubt the Savlon will make much difference but is care for care's sake. I replaced both the cassette as well as the pump batteries, an extra routine on Sundays. The stoma has improved over the last few days since I found blood around the opening; she says there is sometimes pain when I move the tubing back and forth each night as regular maintenance but there is no pain when I press gently around the area. The stoma tends to inflame and produce discharge after she has spent time bent forward in the wheel chair cleaning the floor, reaching for objects on the floor, cleaning parts of the wheel chair. Anyway, when her breakfast was almost complete, the white of chewable calcium tablet dribbling down her chin, she decided to sort the binders of embroidery guide sheets she once printed in large quantities. When I asked why she said she needed to "compact" them. Quite frequently she goes through this process with over a dozen loose-leaf  binders of 2 ring, 3 ring and that type with lots of "pegs". She does not appreciate that the spacing between the holes in the plastic sleeves is slightly different between the 3 types of binders so much time is wasted attempting to force the sleeves to fit, which only damages the envelopes. Then she attempts to consolidate sheets of paper into the envelopes and what were nice flat sheets become crinkled rubbish. So like an inconsiderate parent I threatened to toss the "toys" in the garbage bin only to motivate to work faster yet with greater confusion; she would not stop so I grabbed some folders to make good on my threat and took them out to the garage. She persisted, so I wheeled her into the sewing room to sort out the stuff scattered around in there. Some time later she called me to get her out of the sewing room and her feet up. She was hot and sweaty, wanting the fan on, and that I did as well as get her a Hydralyte ice block. I replaced the Exelon patch which I had forgotten to do earlier. I left her watching an episode of "All Creatures Great and Small". On checking her 30 minutes she was tugging at a loose thread on the bottom edge of her blouse, I trimmed the thread with scissors before the blouse was destroyed.

A few days ago I discovered BritBox in my search for entertainment for her. Subscriptions to Netflix, Stan, Prime and the like serve atrocious junk in the main, the majority exported as "culture" from that tottering society that thinks itself "free". BritBox streams British comedy, drama and documentaries most of which is well worth watching. I am hoping she does not tire of it too soon.

Other than a phone call from someone asking whether we had any questions, the Skype application still waits on the supplied tablet for regular conversations to take place between a volunteer and her. I have my doubts the effort will be successful. I was told recently by someone that a phone conversation was confusing and that she seemed confused about who she was speaking to; a case of too little too late.

At the end of December she came to realise there was an area bare of varnish on the plinth of the book case that holds the ring binders mentioned above; a bare area the result of one or two of her cleaning efforts months ago. She has lots and lots of coloured felt pens which she applied to the bare wood, first in light tan shades, then progressively darker until the area now looks black, even though some glitter seems to have been added as well.

In checking on her just now when I heard no TV-like noises coming from the back room, I found her roaming around the endless streaming applications. Something had happened in "All Creatures Great and Small" to displease her. So back into BritBox where she decided upon "Doc Martin".

Quite happy with myself for noticing an improvement in her dyskinesia seemingly associated with electrolyte intake, and then finding that confirming clinical paper, I attached the long unused FitBit to her right ankle on New Years Day, a day most disagreeable. She was stressed, she was dyskinetic, my clever deductions about electrolytes out the window. Then the next day, by sheer coincidence (miracles do not happen in my world), Radio National was playing an interview while I was busy doing something or other, the details since forgotten, when my consciousness took note of the speaker discussing the ill effects of eating liquorice, mainly blood pressure problems if I remember correctly. She eats liquorice more often than chocolate, each week I replenish her stock of liquorice and chocolate. She seemed to remember having eaten a lot on New Years Day. Anyway, I decided to put liquorice out of her reach and increased her morning intake of Hydralyte to four tablets. I "think" her dyskinesia has much reduced. In a day or so I will reattach the FitBit and compare the charts with those from many months ago and, perhaps, allow her to pig out on liquorice a few days later.

During the last few weeks she has needed to lay down and sleep during the day, morning or afternoon. Yesterday she slept from 1300 to 1530 even though she has been sleeping very well at night, not disturbing me with bursts of dyskinesia rattling her bed in the early hours.