Chapter 439 - Respite or Holiday

Last Tuesday I dropped her off at Wild Dog's day respite unit then motored down to the coast at Blow Hole. Wild Dog had booked wheel chair accessible taxis to take her to and from home each day until I returned on Thursday to collect her. A Wild Dog carer attended to her regular toiletry and dressing each day as well as handover to/from nurses contracted from Grass Ridge. Since Wild Dog staff are unqualified to handle the Duodopa pump, registered nurses were required. They stayed overnight and prepared meals for her as well. The nurses, having read all the notes and instructions about handling the pump, noted that the day time pump flow rate was scheduled to increase from 5.4 to 5.6 ml/hr on the Wednesday even though I had not made mention of it in my notes, intending to do it myself a day later on Thursday. She was very happy about the care she received. Neither of us will be apprehensive about "at home" respite in the future. Only one minor issue happened; I found the partially used Duodopa cassettes were left on the kitchen sink, no problem with that, except the tube on one cassette had not been clamped and a red sealing cap was not screwed on the end of the tube. In consequence the whitish liquid had oozed onto the stainless steel surface but no where that would stain..

Just like a holiday, the benefits of respite quickly disappear. Yesterday was hot; we were unable to go shopping early because she had the sensations that she need a bowel motion, spending almost two hours seated on the loo. Then we went shopping, which went well because I pushed her around in supermarket coolness, each of us with a basket. During the afternoon she was in a bad way; breathing difficulties needed the ball machine and prevented her laying on her bed, bad dyskinesias in her legs, tingling at the top of her head and nose (perhaps due to a bolus dose intended to ease dyskinesias), propped her up on a lounge recliner and we both dozed, on waking needed the loo urgently and remained there for over two hours. The Wild Dog carer at 7PM warned her that sitting there for so long was not good for her, suggested no more than 1/2 an hour. Her motions are soft, just slow to come and a sense of completeness does not happen.

On Sunday 13th November I wrote in my notebook "? minimal dyskinesias today? why?" The FitBit around her right ankle recorded three spikes of approximately 275, 360 and 380 steps at approximately 0730, 1730 and 2130. The total Fit Bit steps on 4 days were 11th Nov 9,397, 12th Nov 31,976, 13th Nov 2,170, and 14th Nov 29,334. On most days there will be  groups of up to 10 spikes of 1500+ steps in an hour or so. So what was "good" on that Sunday? I have no idea. I tend to record the negative events that happen to her; the good events are simply normal living. And the only bad thing on that day was a note I made "0950 Without glasses on feels sick, goose bumps." Exactly what a "step" means in her context, seated in a wheel chair, never taking real steps, I don't know other than a sort of objective measure of the amount her right leg kicks and shakes.

Recently she realised there were mistakes in the patchwork she labours with, so she has largely un-picked the whole thing. I saw nothing terribly wrong with what she had done; today she began reassembly. Yesterday she found a poorly sewn hem on the slacks she had on, so using a small pair of scissors she began trimming. I noticed this morning when I hung the slacks on the line after washing them with other clothes that the folded length forming the hem for some 150mm on one leg was missing, leaving a large hole. She says she can fix it.