Progression Two

Occasional notes in the life of a Parkinson patient & her carer.

Saturday, January 01, 2022

Chapter 616 - Just Another Cycle Approaching Oblivion

We both have had sore red areas at the COVID injection sights and feel tired and listless, especially this morning, but that may be due to [Her] watching until midnight the festivities and fire works on TV from her bed, although I went to sleep and woke to turn the lights out. Although the way I am feeling reminds me of getting up after having had a bout of sickness.

I officially finished with 2021, crap year that it was, by satisfying a craving for a good book, and noticing that I had only read the first two Morse books on my phone, bought the third. What a way to remember a forgettable year!

When I checked on [Her] a few minutes ago she said "There was someone at the door." When I looked I found a printed note, from our village management, stuck in the grill of the wire door. In part it reads:

"We are writing to you to advise that an individual who was in attendance at the Christmas day afternoon tea in the front garden of Villa #69 has tested positive to COVID-19. - - - - - - - - - - All attendees of the afternoon tea were outdoors and do not meet the Government definition of a close contact. However due to the rapid spread  of the virus, it is important that we all take extra precautions to remain safe."

A cynical interpretation of that suggests that our so called Prime Minister does not consider doddery old farts standing around in small groups comparing notes about their grand kids, the weather and all such riveting topics are close contacts irrespective of the direction of prevailing breezes.

But good news for us! Ages ago [She] became sensitive to socially mixing therefore we did not attend. The afternoon tea was a substitute to the usual Xmas luncheon held in the hall for all residents not socially involved with family etc on Xmas day. This year it was thought inadvisable to have a luncheon in our village hall, which would have been considered a close contact environment.

I now wonder, morbidly, whether others who attended the afternoon tea may test positive although it is now a week since that social event. Here's hoping the individual caught it after Xmas day.

Remember not to accept invitations to garden teas, even if HRH invites you ;-))     

Writing the above reminded me of the first time she noticed social shunning. We were over west way back in 1993 or 4 or so when she told me about some "ladies" at a quilting workshop she and a friend attended. The "ladies" complained volubly that they had enrolled in the workshop to quickly learn new techniques and not to be slowed down by those unable to keep up. I assume there have been similar incidents, even though she has not described them to me. For many years  I have noticed in group settings she is ignored, not included in the circle of "friendship" once individuals fail to wait long enough for a response from her. 

The same happens with phone calls. They do not understand. I admit I am often short with her when I need a response to a question even though I understand. Or do I really? The KISA phone was bought for her to make phone calls easier for her, yet she has only been saved from mis-dialling. It sits in the charger ever waiting. She herself ignores it now. I leave it close to her when I am away from the house in case I need to call her, although I doubt nowadays whether she would respond and pick it up. Similarly if she was in bother and needed to call me, or for that matter, to press the emergency call button which I always try to remember to place on her wrist.

There is a doorbell button mounted on the frame of her wheel chair, another suspended over her bed, for her to press and sound an alarm here in my dungeon or in the room I now call my bedroom, should she need me. Only yesterday she was stressed needing me, unable to locate the button on the wheel chair (positioned behind her left knee), her dyskinetic legs unintentionally began kicking the hallway door; an alarm of sorts I suppose.

I have noticed that her conversation with the volunteer (up in Cane Toad country) does not flow and is hardly conversation. Now the volunteer, unable to get much response from her in "conversation", plays trivial pursuit with her over the Skype connection and I am surprised at her responsiveness and clarity of voice in her responses, even though her answers are often incorrect. I notice that women can talk endlessly about the comings and goings of their grandchildren and other such enthralling topics, yet not easily when the hearer does not comment or attempt to interrupt with the exploits of her own, for she knows of none, forgets names, and has not been in the in the information flow for years; the opportunities faded away a long time ago. There seems to be greater motivation to tell one's own story while the listener wishes to interrupt and take turns in dialogue. She shows no intention to interrupt, to speak, perhaps her mind is far away.

I just responded to my several alarms sounding to replace the cassette on her pump. She was carefully folding the Coles shopping bags from our delivery yesterday, She may spend hours doing it, folding each red and white plastic bag into small rectangles before keeping them in place with rubber bands. She forgets what she has placed in drawers, boxes and handbags so will energetically remove the contents to "find what is in there" even though she may have unpacked that sane receptacle a few weeks earlier. Unfortunately, she often fails to return the contents to the drawer or whatever.

She has begun to be satisfied with watching TV series, mostly on BritBox, and sometimes she understands the plots, quite often saying "I don't understand what it's all about". Although that comment applies mostly to Yank series on other services. Each night she remains awake until 2200 listening to Betty Neales (Mills & Boone) book readings. She must have about 20 readings  of these passionate romances on her phone. Usually each book reading lasts for two nights. She never complains about remembered book titles, character names, story plots. From the little I hear, the titles are distinctive but the plots are quite repetitive. So I am not buying any more unless she complains. She always says she listens but at times she seems very asleep.

Beginning tonight, I have cancelled evening visits by Wild Dog Carers, partly to restore some credit to her Level 4 Care Plan for emergencies, perhaps for incontinence supplies but also to restore some of our "freedom" to behave normally, having meals at evening when the sun is low during these months of daylight saving, and for me to not watch the clock so I have things in place, nighty, incontinence pants and such, so the visits are no more than half an hour in duration because some begin to make suggestions that more than half an hour is needed from her plan to cover the tasks involved. Since we began using the sling lifter, bought years ago but never used until recently, more time is required to lift her from one place to another compared with using the Sara Stedy, So I have been doing the "clean up" tasks so why not economise by eliminating evening visits costing the plan between $45.50 and $77.00 per each 1/2 hour evening visit, depending on whether a weekday evening, a weekend evening or public holiday evening is applicable. The carers shower her every morning and help to dress her. I believe a lot of old ladies shower three or fewer times each week, but not for my wife thank you.

Some tell me that I do more than most men would do. So what do I do that is onerous? Shower and dress her when circumstances require, move her from bed to commode to wheel chair using the sling lifter, empty the commode pan (I have avoided using the sling lifter for transfers to the toilet but I must experiment), wash and dry our clothing (but of course never iron any of it), respond to her needs of any sort, cook our meals (only if they are delivered frozen in plastic bags, or dry as with instant spud, or in tins or plastic containers), push her rectal prolapse back in when required, monitor her stools (some may say turds) for constipation/hydration issues which until this past year were mentioned by health professionals yet not in a practical manner that would have alerted me to the onset of her prolapse; folks shit just doesn't just happen in secret), ease her discomfort in the wheel chair or in bed, manage her Duodopa pump and its cassettes 24x7, manage other medications she takes from time to time, try to keep her "entertained", make appointments for her and be her mouthpiece to doctors and support staff whether they think they need my commentary or not. There can't be much else. Yes folks, respite may be appropriate for some when I could have coffees and such luxuries, talk to my friends (there are so few either close at hand or far away). In a way, 

COVID gives me a valid reason for remaining mostly a loner at heart. And for that I am pleased, having avoided situations such as the Xmas Day afternoon tea mentioned above. It must be realised that for one of we two to catch COVID more or less means the end of both of us, at our ages (she becomes an octogenarian this year) and our states of health. And she requiring 24x7 care.

Our state had 22,577 infections yesterday. What are the odds? Much better than a ticket in Tatts.

So let's go for another spin around the big ellipse and we may meet back here next year.


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