Chapter 603 - The First Time Ever I saw Your Face

 It was just where Park St becomes William Street, on the corner across from the Museum, I saw her in a tight tartan patterned skirt and a olive green twin set, black high heels, on a sunny morning in late August 1959. Although that chance brief meeting in passing must not have been our first encounter, for I knew who she was, but it is my first memory of her. I later learned she was on her way to a typing class; I was on my way downtown to a PMG workshop to have a hole drilled down the shaft of a rotary switch. Did we say Hi! or something similar that teenagers may have said in greeting in those days? She was 16, I 18 years old.

Yesterday, as I was fitting her feet into the slippers glued onto the pedals of the pedal machine, I looked up into her face and simultaneously saw on the wall, out of the corner of my eye, my embroidery of a photo of her taken when she was a few months older, at 17. In front of me a face with watery grey eyes surrounded by red rimmed lids a little larger than the eyes, beneath which was deflated puffiness, an upper lip partially withdrawn into her mouth. Very little suggestion of eyelashes but her little button nose remains unchanged, except for a small bump of a mole on the ridge. Two cheeks, both flushed without rouge and lined. Her hair, once the bane of her youth, retains much of its colour and is wavier that she ever imagined it could be. On her chin some sparse white stubble which needs the attention of the epilator I bought her last summer. And tears came to my eyes, as now, as I write these words. I hid them by looking away.

Yesterday was a very bad day. I woke several times in the early hours hearing her dyskinetic legs  rattle her bed and rustling the bed clothes. At 0630 I changed the pump rate from 3.4 to 7.4 mml/hour (increased slightly a few days ago hoping to minimise the dyskinesia) and a brief burst of dyskinesia as I disturbed her. At 0730 I slid her onto the commode, into which a small drop of poop, then onto the pedals, a sachet of Movicol (most unnecessary although I didn't know that), a small pile of "cat turds" in the pot. She was unable to finish drinking the 700ml of water with 2 hydralyte  tablets so I took her over to where she eats meals near the TV, leaving her seated on the commode (I usually transfer her onto the wheel chair). Shortly before 0930 I readied her for the Wild Dog carer by removing her stoma dressing and placing toe guards on her feet. The commode pot had quite a lot of sloppy poop in it when the carer arrived; we waited for the flow to stop, and when it seemed to, her shower began and the poop continued and with some encouragement flowed down the shower drain. At 1000 I decided it best she remain on the commode, dressed only in a nighty. I sprayed her mouth with Fess as she began to have some saliva problems. I replaced the Duodopa cassette. Then Exelon 10 patch onto her right shoulder. She asked for her logs to be raised, lowered, untwisted before asking to lay down. So at 1010 I rolled her onto her right hand side on her bed protected by some green and blue protectives over the slider sheet on the bed (she had no pants on). By 1025 she asked for her right side to be "out", then onto her back, then onto her left hand side, then her left hand side "out", so onto her back, seemed satisfied then dozed. At 1130 she asked to get up so I badly fitted wrap around pants (I find them difficult) and in sliding her onto the wheel chair I jammed her left leg against the wheel chair, breaking the skin. She remained in her nighty and I wheeled her to the back room where at 1200 I dressed her stoma and bandaged her left leg. At 1230 she had a banana and peanut butter smoothie and two chocolate rolls and some grapes. She woke from a short sleep at 1340 wanting to lay down so I returned her to bed onto her RHS and went straight to sleep without even waking when an Asian female voice rang to ask about Government allowances for solar panels. As I was setting up an Alexa monitor to keep an eye on her remotely she woke saying "Hot" so I removed the bedclothes and turned on her small black fan. I noticed she had bad dyskinesia at 1540 so I rolled her onto her LHS and rubbed her legs for 15 minutes until the dyskinesia stopped and she slept.

She woke at 1700 so onto the wheel chair. The Wild Dog carer changed her into clean pull-ups and nighty then we put her back to bed. She had wanted a fish meal from the couple of choices I gave her but once laying down she wanted nothing and went to sleep. I found her awake with dyskinesia at 1930 when I woke in the back room. She did not wish to eat. Neither did I. I rolled her onto her RHS and turned the fans off and changed the flow rate to 3.4. As I write Barbara Streisand sings "The Way We Were" on Alexa. At 1945 vigorous dyskinesia would not stop, rolled her onto LHS, lightly rubbed her legs to stop the dyskinesia which began again at 2000, rolled her onto her back, some minutes later she asked to be on her RHS, then back and forth until 2030 when I gave her two Rapid Soluble Panadol. At 2040 still rolling her, rubbing legs until gradually she became quiet, then it all began again until at 2100 all is still then her eyes begin to open, dyskinesia begins and she asks to be moved up the bed. She wanted to be uncovered, then covered, then at 2115 she said in a loud voice "I want to face the wall" so I rotated her onto her RHS, a little shaking stopped. I left the room, decided I needed to eat so I had a tin of Heinz chillied beans. She was quite still and sleeping at 2220 but 15 minutes later her head and legs suddenly began to shake, her eyes opened. I rubbed her legs. Things slowed. At 2245 as I turned the light off there was a slight movement of her feet. What happened during the night I have no idea; I awoke at 0500 to find her only covered in a sheet; quilt and blanket were on the floor; she was cold.

I thought today was to be a repetition of yesterday as she left a small cow pat in the commode pot and dribbled poop in the shower again, but apart from a rumbling stomach, she is much better.

Yes today may be better, yet I wonder how many bad ones we can cope with and what will be the outcome.

She continues to knit on #10 needles very fine wool without finishing too many rows. This is much more productive than pulling thread from a bath mat that kept her occupied for many days.

Another song, by the Seekers, "The Carnival is Over". Roberta Flack sings the title piece to this chapter, and Flack is one of her ancestral names.