Chapter 619 - Interrogation is not Conversation

 I am far from being a gifted speaker, either on or off the phone. I had problems speaking to my mother simply because we had nothing in common and I preferred not to tell her much about our comings and goings because, well, she mixed with scroungers and layabouts, so I encouraged her to tell of her younger days. However, once she was in a home and towards her end I realised that staff handed her a phone set to speaker mode I gave up calling her. I abhor my words being overheard by unknown listeners. I now find many tire of holding their little phones against an ear and instead lay it down somewhere and set to speaker-phone with me not knowing until I here another voice adding to the dialogue.

The preceding is an introduction to a phone call this afternoon. Her KISA phone rang. Although she was quite close to it, she was unable to move her wheel chair quickly enough, so I reached over and took the phone from its cradle. The voice said "I was just about to hang up it was taking her so long." There may have been about 5 or 6 rings. I later checked from my own phone that ringing to the KISA phone lasted for one minute before dropping out, which is a damn long time. Anyway, I put the KISA phone on speaker and overheard the conversation (for want of a better term) "What's the weather like down there?" When the response from this end was slow "Did you say something?', a pause before our end said one or two words including "Grey". Then "What are you doing?", a long pause from this end "Sewing.", "What are you sewing?' causing confusion at this end because she was not sewing anything but was watching the tennis. I can't recall another one or two questions asked of her before "Oh well, I'll ring you another time" then the caller hung up. Now was that a conversation or a meaningless interrogation?

I have not been of much help to her with the KISA phone, having bought it for her to replace her smart phone which is now used solely to play audio book to her. A smart phone is dangerously confusing in her hands. At first she seemed able to cope with a non-smart phone so I hardly bothered to show her how to use it. I disabled a button on the rear which initiated a call to 0000 and later when someone became irate about repeated "pocket dial" (I think that was the term) calls that I allocated that person to a different button. Also two taps on a button are now needed to initiate a call.

So I decided some re-training was in order. 

To Answer a Call - press the button with a green phone symbol on it, then press the same button a second time to put the call on speaker. Press the button with the red phone symbol to end the call.

To Initiate a Call -Two presses on the button labelled with a person's name to call that person. When the person answers press the button with a green phone symbol to put the call on speaker. Press the button with the red phone symbol to end the call.

Completing those few steps was difficult and confusing for her. We will train again tomorrow.

Before Xmas she was looking through a catalogue of gifts. When I asked whether she wanted anything from the catalogue, she said "One of those", pointing to a "smart" phone. I explained (as caringly as I could) that it was too hard to operate. Her smart phone, now a superseded model, is used to play her audio books and I don't think she realises that it is actually a phone..

The only contact she has is with me (how exciting), one Wild Dog carer each day (she can't remember their names) who are here for only 30 minutes to shower and dress her, a once-each-week Skype call with a volunteer in another state and an occasional visit to a doctor when I am her mouthpiece (doctors expect her to answer questions but 10 minute consultations don't include long pauses), she is wheel chair bound and sensitive about her condition so is unable to visit other women in our village and even so, of those she once knew only one still exists but never visits. Pre COVID I once had some respite hours when a carer would stay with her but most of them watched banal TV shows or read a book, perhaps after having attempted to engage her in conversation.

She listens to hours of audio books when in bed. At first I bought Betty Neales novels (perhaps 20 now on her phone) because such innocent romances were unavailable from the local library. Once I realised she failed to recognise the plots on repeated playings I began borrowing audio books on-line from the library. So far she says books from the library are "good".

Our new regime of showers at 1000 is working well, although she wanted to return to bed after showering this morning. And not having carers come each evening to help put her to bed is working well, allowing us the flexibility of eating when we wish and usually I put her to bed sometime after 2100, although recently she has watched tennis, but how much she absorbs of it I do not know..

Chapter 618 - Stuff as Another Year Drags Away

 Mid afternoon yesterday when I checked on her she was slouched forward in her wheel chair, head drooping, sitting quite still. She was looking at her right hand where blood had dripped off the index finger. Blood on the floor had been rubbed with tissue beneath her foot, her standard method when attempting to remove marks on the floor. the trickle of blood down her arm had begun to clot, so the 1.5x1.0 cm of skin missing from half along her lower right arm had been removed some time before I reached her. Dried blood was on the fingers of both hands. She was most unconcerned about the blood and had no idea what had damaged her arm. There were no cuts on her fingers or arms, just the area of skin missing. She flinched as I pulled away a small piece of loose skin, I sterilised a small pair of scissors to cut away another small flap of skin. The area was no longer bleeding. I covered the wound with a wide band-aid to which I had placed a drop of Betadine. I have since applied several non-stick dressings to the wound. I suspect she had been cleaning the leg of the adjustable and tilt-able over bed table she now uses to eat from (she rubs surfaces with tissues wherever she finds "dirt"). When I looked again this morning for sharp edges on the table I found a black hex round headed bolt, with razor sharp edges, part way down the leg of the table. A label around the bolt head reads "DO NOT REMOVE"; I suspect it has something to do with the height adjusting mechanism within the table leg. The bolt head is now covered in several layers of duct tape and she has strict instructions not to remove the tape (another of her pastimes is to remove tape off surfaces and boxes). I am bothered that she failed to alert me when the accident happened, and had no idea how the damage to her arm was caused. Long ago I removed most sharp objects from her access but there are still some small knives and such in the kitchen which I must place out of her reach. 

Yesterday I sent an email, part of which reads 

"I often wonder whether the 1944 diagnosis of "softening of the brain" of [her great grandmother] Selina [F..../M.../H...] may have been the term GP's used way back then to describe the symptoms displayed by P: inability to respond to questions, difficulty speaking, unable to remember names, increasing bouts of sleepiness and what I refer to as "zombie" mode when woken before, say, 0900, inability to grasp/hold objects in her hands, inability to dress herself, difficulty feeding herself that is deteriorating to pushing pieces of food onto spoon or fork with her fingers, obsessive/compulsive activities such as pulling threads in clothing or fabric, a need to remove labels on clothing, boxes etc. and the list goes on. Looking on line the word Encephalomalacia seems to be the modern term describing the vague term "softening of the brain" and seems to be associated with injury so may not apply here." 

In recent months she has exhibited increasing bouts of "sleepiness", which I often refer to as "zombie mode" between the hours of 0600 and 0900, perhaps being less than alert as most people are on first waking after which she may become less responsive, staring into space, unable to do anything other than sit on commode or wheel chair. Sometimes she may be showered in this state if the condition is "mild" but more often I have returned her to bed before carers from Wild Dog arrive. Consequently comments about her condition and being in bed so often have been made. Once again I spoke to a nurse at the state PD organisation. She assured me this "sleepiness" is another typical condition of long term PD. So I asked Wild Dog to change the time of the personal care visit when she is showered from 0800 to 1000, beginning on Monday of this week. The following day, Tuesday was an interruption to the plan because I had my nose melanoma procedure booked for 0700, so she was showered at 0600 then returned to bed, remaining in the care of one carer until a second arrived at 0900 when she was sling lifted into her wheel chair. I returned home about 1030. So although the 1000 starting time has hardly been tested yet she has so far remained asleep between 0600, when I make changes to her Duodopa pump, and 0900 when I get her up to sit on the commode, do a little exercise pedalling and begin breakfast.

Recently I had the 2021 year of this blog printed as well as downloading each two years of posts as a pdf file, beginning with the earliest pair 2006/7. I even found my earliest blog attempt at recording this adventure of almost a 3rd of our lifetimes, named "Progression" (without the Two) and downloaded that as well. I have irregularly had printed version of these years made as well, complete with typos, bad grammar and spelling mistakes because I never intended this to be a perfect "history". And in skimming sections as I made the pdf's I realised how much detail of our progression I had forgotten. Such is my life, my memory

Chapter 617 - The Way Things Are

This morning while I sat here in my dungeon I heard a soft thumping. I discovered her on the other side of the doorway in the passage way, her dyskinetic feet bumping the door. I'm unsure whether the thumping was intended to attract my attention. I had difficulty opening the door wide enough because her wheel chair blocked the way. She has never learned how to move the wheel chair forwards or backwards or to turn it. I had to reach through the gap of the partially opened door. She must have taken ages to move from the TV in the back room to where she was bumping the door. When I asked why she didn't press the door bell button mounted on the wheel chair beneath her left knee she said she was unable to feel it. Later I tested her fingers on both hands to prove she has touch sensation in each finger and to name any finger I touched. So what she meant by being unable to "feel" the button really means she was unable to "navigate" her hands/fingers to a spot she was unable to see, in the same manner, she is unable to place her hands on the brake levers low down on each side of the wheel chair. She was once able to operate the brakes, now hardly ever, her hands flap around without touching anything. Anyway she had come to tell me that the Samsung tablet had lost video connection with the volunteer up in Cane Toad country. I will need to find a better position to mount the button.

Recently she began to use her fingers to handle her food even though I provide knife, fork and soup spoon for her to use and sometimes now I spoon feed her. Anything that requires too much chewing is removed from her mouth with fingers to be left on the side of her plate, sometimes wrapping the lump in tissue to disguise it. Usually she dribbles, leaving traces of licorice, chocolate, ice cream down her chin. Usually she is not conscious of this.

Today a Xmas card, delayed in the postal system, arrived from family. I gave it to her to look at. On the front of the card was a bell made of fine strips if tinsel stuff proud of the card surface. When I returned later I saw that most of the tinsel had been peeled away. When asked why she pulled the pieces off the card she said nothing, just stared at me with wide blue-grey eyes, pink rimmed, not attempting an explanation, for there was probably not one. She is not destructive really but loose threads, ends of bands and label-like bits attract her attention so she pulls at them until they can become rubbish. Some time ago I bought her a colourful pillow covered in patches of various fabrics giving different tactile sensations, a small zipper that works without opening to a cavity, short ribands with free ends to flutter and other bits and pieces. Designed to provide sensory stimulation and quite expensive for its size. She has largely ignored it until now when I have seen her concentrating on tucking the riband ends beneath other pieces. I'm expecting her to begin pulling at threads until holes are produced or the attachments are shredded, in a similar manner to strips of lace she has demolished.

Some time ago I bought her three skirts from Target. I had her try them on without actually wearing them. I am finding lowering and raising her slacks more and more difficult in toileting situations so tomorrow she has agreed to wear a skirt with an elastic waist band which should permit easy fitting or removal.

Now that I am using the sling lifter for all transfers and incontinence pants are fitted or removed while she lays on her bed, I have decided to use wrap-arounds rather than pull-ups, thus saving her being rolled side to side to pull them up. The wrap-arounds can be opened up, positioned on the bed, then her bottom lowered by the sling lifter onto it. I have yet to perfect the positioning operation, something similar to landing a helicopter in a strong breeze onto a bull's eye circle on an air craft carrier.

I woke at 0300 this morning to find my left knee very sore, causing me to limp as I checked on her. I found her laying on her back with her left leg bent, holding the knee in her hands. Her knee was very painful. I rubbed Deep Heat on it and returned to my bed. I worried, wondering what possible cause made both of our left knees to become so painful. At 0600 I searched for the side effects of the Moderna vaccine injections we had on Thursday; one is joint pains. That reduced my worry somewhat except I am now puzzled that her knee no longer troubles her whereas my knee remains very painful when walking or when attempting to kneel (No! Not to pray you twit). we both have muscular aches in our arms, another side effect.

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.