Chapter 548 - In Need of a Substitute Outing

As I write she is sorting bags, those brown paper bags from the chemist, brightly coloured plastic ones from Coles and others, those items we now pay for on those occasions when we forget to carry several (true most of the time) in a coat pocket or in the back of her wheel chair. She takes great effort to neatly fold each bag then group like bags into bundles then hold each bundle together with coloured rubber bands (which aren't rubber). This activity of hers happens each week or so, although such an incomplete task will be abandoned should her attention be distracted or I interfere by taking her out or to meals. The bundles are kept at floor level in our built in pantry where medications, various vitamins, aches and pain pills and such like are kept. Soon I will need to place some of these bundles into the garbage to make room for future additions.

I slept in this morning, so rather that change her Duodopa cassette and the pump setting at about 0615 it was about 0700 when I completed the tasks. She had no dyskinesia then, but by the time I completed my Luminosity tasks and showered by 0740 her legs were going at a fast rate. Onto her commode in readiness for a shower there was no time for her to even briefly use the pedal machine before the Wild Dog carer arrived to shower her, after which I decided she had best return to bed for awhile. Then laying on her RHS in bed, and rubbing her left leg for awhile she fell asleep by 0820, only to wake at 0845, without dyskinesia and ready for breakfast.

On Sunday 9th February, a cool damp day, we re-stocked with new pillows from Target then wheel chaired all the way to Dimmey's to take advantage of their new "50% off Closing Down Sale" renamed after being "20% off" and there really is not much left. She enjoys brushing her hands across the ends of rolls of fabric, thinking aloud what she could make from the stuff (but of course she is no longer able to do so), reading aloud labels and prices of items she sees as we move between rows of stuff. She decided she needed lengths of lacy ribands so she selected about half a dozen rolls which we took to the cutting counter. When asked "What lengths?" by the girl she answered "Ten metres please". I probably flinched but at 50% off who could complain? I think we paid $19 for the stuff. Then into the Worker's for a coffee as we were about to walk by, that was a mistake because there was a so-called "blues" band playing in the bar lounge and although we sat in the far corner of "quiet" eating area next door, we could not tolerate the din, she was only able to consume the froth on top of her iced coffee, so we left for home.

On Thursday I weighed her again down at the ReHab, at 48.9kg before taking her to the GP for referrals for her to see the podiatrist next week. She wanted to have lunch out, so to the Worker's again where she had a quiche, sweets and an iced coffee (normal noise levels this time) then down to Dimmey's again where amongst the dwindling stock she bought bundles of socks (I suspect kid's sizes) in garish colours and a small beanie.  Probably none will be worn. Strangely, she passed up the opportunity to buy $10 watches at 50% off.

Thursday 6th saw us up at West Beer to see her neuro where she had her annual nerve conduction study on her right arm and leg. I queried him whether she should be admitted for observation (as he once suggested) but he doubted anything would be gained. I gave him a memory stick containing the video of her last "turn" when she was zombie-like for some 2 hours (when I didn't have her taken to hospital as I did on Xmas Day), an example of her "winding" invisible thread onto an invisible spool. He stated that just so long as her non-responsive episodes lasted no longer that about 15 minutes I need not be concerned. When I told him the duration of the episode  on the memory stick lasted for a period of about 2 hours her said he will look at the video and get back to me if there was concern. I described the effect of rolling her onto her RHS as a way to stop dyskinesia to which he said such behaviour is known but there is no explanation for it; he knows of one instance where the patient only suffers dyskinesia when laying down, not while upright. Now a week later and I have not heard from him.

She "trimmed" the neckline a blouse (worn a number of times before) a few days ago because it was not made correctly until she decided it was not repairable so into the bin with it. I fear that was the fate of another brand new one bought at Big W some weeks ago, I think I mentioned that in my last post.

Chapter 547 - Just a Week Tolerated

After checking my last week's post here I went looking for the new blouse she had damaged last weekend. It had been left hanging from the Sling Lifter parked in her sewing room. Last Wednesday her carer while I absented myself for respite "helped" her clean up the many patch work pieces that she had removed from boxes and left on the floor of her sewing room during the previous week. I suppose the lost blouse was either hung up some where or placed in one of her many boxes containing fabric scraps, ruined clothing and the like. I am unable to find the blouse, getting a pin stabbed finger as a reward; she has uncompleted bits of projects pinned together and jammed into drawers and boxes. Perhaps the blouse was thrown into the garbage?

Anyway, on that respite day I was nearly skittled after I left the car parked at the Workers and walked across a side street, after waiting for a stream of cars to go by, but as I stepped out another car approached so I stopped. The driver saw me and turned on the left turning blinker, and that I interpreted as an indication the car was about to pull into a parking slot at the gutter before reaching me. My assumption was incorrect, for as I stepped out the car proceeded towards me. A few quick steps got me out of the path of the car which pulled into a slot about 10 metres beyond me. From there to the shops and back again to the club I only crossed at the lights. At the club I had my usual pot of tea and lunch, feeling "lost", tired, confused and when a friend rang suggesting I buy a sandwich and join him and others at his organisation I had to refuse. I explained I was not feeling well and should not be out on the roads. I returned to reading New Scientist and a George Gently novel. At times I simply crave being left alone without interruptions and responsibilities.

She has been particularly dyskinetic this week.On Thursday about 0500 I was awakened by her wild kicking in her bed. I decided, since she had been on the night time flow rate of 3.2, to give her a Morning Dose of 1.0 and although the screen indicated such, there was no pumping action to decrease the indication from 1.0 to 0.9 to 0.8 etc. So I tried selecting a Bolus Dose but the pump did not register this at all, probably because it was in a lock out mode attempting a Morning Dose. To hell with it, this registered to me as an unreliable pump, so I set up the spare pump which worked OK. Further fiddling with the old pump proved that removal and reinsertion of its batteries cleared the problem. I am yet to receive a reply from the Clinic Nurse to my request for a new pump. Doing a master reset by removing the batteries is an unsatisfactory procedure.

Friday a visit from a Nurse from Wild Dog Carers. She had intended to be here for an hour but left 2 hours 40 minutes later. She was updating the Wild Dog records which were years out of date and asked a lot of medical questions to which I gave verbose answers. New care plan documentation was presented which was expected to be signed and I refused, sine there was no opportunity to read it and "management" had already signed before hand although the document was expected us to sign in the presence of management. Another document with blank check boxes was to be signed also but because I refused, it was taken away. I kicked myself later that I failed to make a copy of it. When I asked questions the nurse replied that she was unable to answer management related questions. Yet the organisation charges exorbitant "management" fees.

Yesterday, we stitched out a simple design on her Janome 10000, the first stitching she has done in years. I did the threading jobs. An enjoyable time together. What was evident though is she needs reading glasses because she was unable to see to cut threads down on the work. I intended to help her do another this morning when I found her "sorting" things again, collecting odds and ends in heaps on the floor. Time to check on her and have lunch.