Chapter 546 - god's in "Control"

Up the 4 lane yesterday to meet the sisters for a birthday lunch at the club. Before leaving I asked whether she was happy with the seating arrangements at the club; by convention, we always sit at the same semi-circular bench seat at a circular table within a semi- circular booth in the following order - brother-in-law, sister, sister, brother-in-law, myself, then she in her wheel chair. She in PD manner speaks softly and hesitatingly and does not usually take part in the to and fro of the conversation, often when she attempts to do so she is not heard by the sisters on the opposite side of the table. Sometimes she may be asked a question about our grandchildren (a frequent conversation topic) and should she answer softly or hesitatingly she may be ignored. Perhaps I am exaggerating since I am sensitive about her condition. She responded to me that she had no concerns about the seating arrangements so I decided not to cause stress by suggesting we sit at a rectangular table elsewhere in the club.

Rather than buy her a main course I bought her a mushroom quiche and a milkshake at the sandwich bar and when I ordered a main course for myself I asked for a plate of vegetable "chips" (potato, sweet potato, pumpkin, zucchini and gravy) for her. Unfortunately, she was unable to eat the pieces of mushroom in the quiche and little of the chips. And she dropped bits and pieces and gravy down her clothes. After discussing family doings one of the sisters mentioned that primary school children are being indoctrinated about global warming and a reference to the Scandinavian teenager causing the climate change protests. I began to weigh in which initiated the expected response from one brother-in-law "We will not go there!" and repeated for emphasis. That is his response to any discussion about either religious or political matters. I asked whether such matters were mentioned from the pulpit, one sister answered "No" and the other stated "God's in control".

We normally stay for the draws of the lucky barrel competition held after lunch on Fridays at this club. Unfortunately, her legs became very dyskinetic from before noon, getting worse through the meal so she was very willing to leaving for home when I suggested it, to the surprise of the others. As I turned to push her wheel chair away I said sarcastically "god's in control" to which a sister replied "Yes He is" and I said as I pushed the wheel chair away "What a load of Bull Shit". Back at our car I dropped the almost full milk shake container on my foot, splashing it over my left shoe and onto the car; well, much better than a bolt of lightening.

Although still dyskinetic she was keen to visit BigW when I suggested it, I thought doing so would put a little zing to a less than satisfactory day. So I parked in a disabled slot near the escalator and lift and we toured the store for some time, buying clothing she probably does not need and other trivia. Her dyskinesia became worse as we drove, she asked me to stop about 20 minutes from home. At the rest stop she asked to me lower her backrest for she wanted to sleep, but that being uncomfortable she wished to sit upright again. The car A/C was going full blast, she felt hot, I decided to head home. Once home I put her to bed. Later she had some left over peanut butter and banana smoothie from the night before. She asked to return to bed before the wild Dog Carer arrived so I changed her clothes and made her comfortable. I asked the Carer, when she arrived, to have a "social" with her and I believe they discussed pregnancies and child birth while eating chocolates bought at Big W.

I thought best to check on her after typing the above, finding her with a small pair of scissors cutting gaps into the rear edge of the neckline where the size label once was on one of the blouses bought yesterday at Big W. Obviously she had crudely removed the label and was in the process of "trimming" her workmanship. I took several photos from my phone, and when she didn't object, I videoed her as well, At one point she said "You'll flatten your battery." I left her to her job of destroying the $25 blouse; that was about 10AM and I suppose she will remain at her task until noon or until something else distracts her.

I'm too lazy to check whether I mentioned my left ear infected for the second time in the last few months. My hearing checkup was postponed for several weeks. On Thursday my left ear was so bad I was told I will need a new hearing aid and my right has deteriorated to needing one as well. The audiologist (I assume that is what she is called) asked me to return in two weeks to re-check my left ear because it still showed after effects of the infection. When driving the car I find having a conversation with my dearly beloved impossible (since we drive on the correct side of the road in our civilised country).

Last Wednesday we attended the all-day PD Clinic at the other hospital in Big Smoke City. A good day discussing her needs with the allied professionals but we had to skip seeing a neurologist because after waiting 40 minutes she was becoming uncomfortable with dyskinesia and I had summoned our transport to the door as the neurologist turned up. The organising nurse asked whether she was as "usually as bad as this" as I bundled her into the car; I replied "Yes" rather than being verbose about changes day-day.

I checked on her again; she asked for "something cold" so I brought her a lemonade ice block while she continued fiddling with the damaged blouse, some 60 minutes after beginning; she knows what needs to be done without the ability to do so anymore. At the PD Clinic she obtained a score of 21/30 for the Montreal Cognitive Test, up one point from the same test last year. That meat head Trump  scored 30/30 according to https://www.theatlantic.com/health/archive/2018/01/the-president-can-draw-a-clock/550610/ but I'm sure that's a hoax folks.

Chapter 545 - I Left It A Little Longer This Time

I began waking before six, listened to the 0600 ABC news. Her legs were vigorously dyskinetic; they had been also at 0345, waking me so I had rolled her onto her LHS to stop the kicking and return her to sleep. About 0610 I rose, to the loo, returned to the bed room with a new Duodopa cassette, fitted it to the pump and replaced the pump's batteries as I always do on Sundays. Changed the flow rate from 3.2 to 7.0, MD of 1.0 and flushed the side port. She remained asleep without dyskinesias. I returned to the bedroom at 0645 after completing my daily Lumosity exercises to find her with mild leg dyskinesias, eyes partly open, blinking occasionally, not responding to my questions, not responding to light pats on her face or hands. Having made sure my video camera had fresh batteries in it following our Xmas Day saga, I grabbed the camera and filmed her for a few seconds. I gave her a 2.0 ml bolus at 0700. her eyes had closed. Telling myself not to become excited I showered and dressed. About 0710 her leg dyskinesias began. I attached my cuff BP monitor to her right then left arm  but was unable to fit the cuff well enough not to be shown error messages. I hunted around for her wrist BP monitor, and finding it discovered its batteries were flat. Replaced the batteries and measured at her left wrist 139/72 77 at 0721, then 142/65 84 a couple of minutes later. Leg dyskinesias, having stopped some short time earlier, began again. Her breathing was regular and quiet; eyes remained closed, she was warm but not sweaty, did not respond to a request to squeeze my hand at 0725. At 0727 I replaced the Exelon patch on her right chest with one onto her right chest, not wishing to forget to do this later on. Dyskinesias continued. At 0733 BP 156/66 112 while leg dyskinesias were vigorous. I videoed her for short bursts. At 0745 she moved her right hand to the bed rail. At 0748 171/78 93. At 0753 moved her arm again. At about 0800 the Wild Dog carer arrived to dress and shower her, which was obviously out of the question. BP 148/71 75. She touched her nose with her right hand. Although her eyelids were shut, her eyes moved beneath them. The carer said she was breathing OK and her colour was good. The carer and I discussed matters until 0830 when she left. BP 141/63 68. At 0834 she rubbed her chin with her right hand. 0845 still asleep with no dyskinesias, eyelids closed but eyes moving, breathing gently, 173/77 72.

At 0900 she woke, saying her legs were "tingling all the way down". She was quite lucid. Did not remember the Wild Dog carer who had been here. 155/115 68. At 0930 I slid her off her bed onto the commode. She said her head felt "huge". I showered her. She stood unaided into the Sara Stedy while I dried her bottom and pulled up her pull-ups and slacks. Then she stood unaided for the transfer between the Sara Stedy and her wheel chair. She had a breakfast of orange juice, diced apricots and a slice of apple and custard roll and by 1025 her head no longer felt "huge" but the crown of her head was tingling.

After cleaning her teeth we left for the Rehab part of the hospital where I can wheel her in to weigh her on their jockey scales. Clothed and with Duodopa pump attached she weighed 64.8kg. So after subtracting 16.6kg for the weight of wheelchair, clothing and pump she weighs 48.2kg, about 0.5kg less than on 15th December 2019, about 3.3kg less than 8th November 2019. On the way to the shopping centre I disposed of the used Duodopa cassettes in the sharps bin at Community Nursing.

We bought a new pair of the usual shoes we buy for her, this time needing to buy size 8 rather than 7 because her left foot  refused to bend, and even then her toes hurt in the larger size. Hopefully her non-cooperative foot may be a side product of this morning's drama and will lessen. Anyway, I had applied my hot glue gun the the velcro straps she almost removed while pulling at loose threads on the shoes yesterday. Then we stocked up with frozen dinners she thought she may wish to eat, for she is becoming bored with "cottage pie" meals. Unfortunately, what we bought today are much the same. I had a brilliant idea to make smoothies out of frozen meals after taking them from the microwave; she doesn't like the idea of a plate of "mush". Yet that is a good way to have her eat the lumpy bits and peas and carrot pieces in these meals. We then spent about an hour at one of the coffee places having a meal, she having potato wedges, sour cream and sweet chili sauce, although she did not eat all of it.

Home again by 1500. She then went to the sewing room to continue "sorting stuff". Last Wednesday while I enjoyed some respite a Wild Dog carer helped her re-arrange the sewing room to leave a wide open area in the middle, much better for her to move her wheel chair in. That area is now covered in boxes, containers and plastic bags with loose stuff in between. I hope that carer does not return soon for she would feel she had wasted her efforts.

The carer of this morning came to put her to bed tonight. She stood quiet well for transfers and sounded reasonably bright after this hectic day. She is reading a Mills & Boon on her reader above her in bed.

Chapter 544 - A New Decade

So what?, another invisible boundary passed, man made time ticks away. I once wondered how individuals on Death Row in that so-called Land of the Free, especially those who were actually innocent, counted off their days waiting for a Tomorrow, the final one, that never came. This year I will cross the line into my 9th decade. I wonder how I will exit, under my own power or in a puff of smoke? You, the reader, may shake your head and say I'm showing signs of depression to think such thoughts, let alone write them for the world to see.

A few days ago I returned from checking our mail box to find her disembowelling the large Peace Lily near our back door. Grabbing the wheel chair handles, I pulled the wheel chair backwards. Hanging onto the soil filled pot, she slipped out of the wheel chair onto the floor. She was not hurt and I felt a fool. Then I cleaned the floor of soil and pieces of lily. A portion of the lily now droops. Remembering the time I shook the wheel chair, frightening both her and myself, when I went to see the GP a few days ago to have my ears flushed out, I asked for a referral with an ongoing plan to regularly visit the clinical psychologist again this year. Without telling me why, the GP began asking me questions about being sad, depressed etc and my answers must have been confused until I realised he was giving me the once over to complete a form to justify him preparing the plan and when I checked the document later I think he has made me seem worse than I am. I don't mind, unless they lock me up, for the psychologist is the only person I speak to who doesn't refer to his own personal issues with interruptions about his own experiences (and of course I realise that he is "hired" not to interrupt in that way). And the outcome of these hourly appointments filled with my talking is a sense of relief and release on my part.

Why is Xmas so sad? For me anyway. I have little memory of actual Xmas days, only family events and some best forgotten, that happened in summer time. The one that always pops into my mind, and it may not even have been at Xmas, although the weather was hot, was winning a foot race at a Sunday School picnic behind the Lutheran church we attended after we escaped to Jindera. As a prize I was given a large blue handkerchief with a large blue square in its centre. I treasured that piece of fabric for years. for it was mine, identifiably mine, as well as the first handkerchief I had ever owned, for as kids we only ever wiped our snot onto squares of rag. This year we initiated no Xmas card mailings, responded with online cards (which we pay a subscription for) where possible and some that arrived without return addresses may not have been responded to, if I was unable to find an address easily enough.

New Year's Eve we went to bed early. Memories recalled of waiting tensed as Y2K rolled across NZ, then the east coast before it reached us on the west coast and I was relieved to be able to phone the public servant yobo I reported to that I had seen no reports of problems with DEC hardware or software. Twenty long years ago. On this New Year I learned that someone was disinterested in accepting responsibility for the care of my genealogy pursuits that I began way back in 1972. The fate of both online and offline records, quite a number of relevant books, certificates and notes are of concern to me for I fear the lot will be tipped into a dumpster.

Following our emergency on Xmas Day I decided on Friday 27th to increase her over night flow rate from 3.0 to 3.5 assuming that will reduce her "sleepiness" at 0730. Such a night rate seemed to cause wakefulness and dyskinesias during the night so at 0100 on 31st December I reduced the rate to 3.2 and this night rate has been maintained since then.

She is often drenched in sweat. One morning 3 nighties, the one worn over night, a replacement when replacing the duodopa cassette about 0630, and another when placed on the commode about 0730 all went into the washing basket. She still has to be encouraged to drink more fluids, and when she sweats a lot I pester her to drink a litre with two Hydralyte tablets. And she often eats ice blocks. Chewing and swallowing problems continue. She usually has several glasses of "smoothie" on most days, and into these I include a small tub of yoghurt and 3-4 scoops of Sustagen. Evening meals are usually frozen cottage pie meals from which she picks out peas, carrots and anything that may seem "lumpy" to her. Last night a slice of salmon (not grilled too firmly), grilled tomato and mashed spud was eaten readily. Last Friday only one small slice of a  thin chicken pizza was eaten with difficulty.

A few weeks ago my right ear was too clogged for a scheduled hearing test. Last Wednesday both rears flushed and my left ear is infected again. Antibiotic drops, cancel hearing the test on Thursday and make another appointment.  A "bump" on my left hand has been frozen.We all fall apart in different ways.

At 1028 my weather station says our outside temperature just clicked over 30 Celsius. I keep wondering when our turn will come with the fires.

I'm sure there are other scribbles from my notebook I should record here but enough is enough.