Chapter 559 - Sunshine on My Shoulder

Yesterday, a day that began so badly became so pleasurable that we were happy for most of it. When she woke me at 0340 from the noise of the slider boards rattling against the bed (I must find a better place to store them) she was laying on her right hand side (RHS) and kicking (dyskinesia) like mad. A few days ago I had moved her bed out from the wall, so it is now a reasonably simple matter to go to that side of the bed and roll her onto her left hand side (LHS). Her hair was in rat tails as if she had just left the shower after washing her hair, She asked "Are you hot? I'm sweating." This, on a cool night at the beginning of winter as the dyskinesias slowed to a stop, then to sleep. At 0520 it all began again. I rolled her onto her back to stop the dyskinesia which began again at 0545. I increased the Duodopa rate from the night time setting of 3.1 to 7.0 for daytime running and pressed the button for the morning dose. I left her on her back as the dyskinesia stopped but began again at 0650 so I rolled her onto her RHS, the dyskinesia faded. After the wild Dog carer showered and dressed  her, she ate breakfast and I replaced her Exelon patch. Her eyes were dry and irritated so I gave her Optifresh drops and Tears Again spray. I made a note that I skipped flushing the side port of her tubing and retaping and cleaning the stoma today. At 0900 she began one of the archived streamed D for PD sessions. Early morning fog gave way to a lovely sunny morning. A few days ago when I started the car I sensed that the battery needed a charge. Using this as an excuse to take her out for a drive (she was not keen to go) we left home about 1100 to walk portion of the river pathway. On the way home I suggested going to KandG'z for fish and chips for lunch; she agreed, so having bought 2 pieces of fish plus chips for each of us, a milkshake for her and a mugachino (sp?) for me we went home to feast. She left a few chips which she offered to me. During the afternoon we read; me outside in the sunshine, she inside with her feet up. At 1645 she said "I feel like walking" I suggested wheeling her over to the pedal machine. About 1710 I noticed the pedals were stopped, her head was slumped forward and she seemed asleep. I was unable to fully wake her, her eyes fluttered open and she giggled. At 1715 I attempted to give her a little ice cream but she giggled. After another 10 minutes her condition had not changed so I checked the pump flow rate at 7.0 but the cassette was quite quite empty. I realised I had not replaced the cassette as I normally do about 0700, so it must have been empty for several hours meaning she had had no medication since about lunch time. I replaced the cassette and gave her a bolus dose by 1740. At 1755 she ate several spoonsfull of ice cream and lemon pie. The Wild Dog Carer arrived at 1800 to help put her to bed, after she cleaned her teeth and sat on the toilet as usual. I was relieved not to have to explain why she had been in such a weird state because I had not replaced the cassette at the correct time. After reading a Mills & Boon book for awhile she was asleep at 2010 when I adjusted the night rate flow to 3.2, up by 0.1 from what it has been for several weeks because she shows bad leg rigidity in the middle of the night when she has been having bouts of dyskinesia. A burst of dyskinesia at 2050 while laying on her back and again at 2205 when I checked the pump. Today began at 0530 when her light being on woke me. I had great trouble getting her into a comfortable position, eventually she was in a sitting position in bed with the top end of the bed raised very high. Today I only forgot to replace the pump batteries, something I do every Sunday. Fortunately the pump beeps a message reporting low batteries; a shame it does not detect empty cassettes. I'm just so damned tired, that's my excuse.

Two of the three games ordered from Amazon Prime arrived during the week. One has cards showing simple images of, say, a lady bird to be constructed from thin pieces of brightly coloured plastic most of which are circular or semi circular, there must be 20 or more cards with images on both sides. The other game has boards showing images of angular segments, of say an engine, onto which similarly shaped brightly coloured wooden pieces are placed. Both are very simple yet she has some difficulty understanding what is to be done with the pieces, tending to be creative, positioning pieces as she sees fit. I try not to patronise her when she correctly positions the pieces. Yesterday I ordered a container of Meccano pieces. No report yet from the OT who visited 3 weeks ago. I only wish she can lose interest in joins, edges, corners, timber grain marks as areas needing cleaning.

Seeing and hearing people, on TV and in real life, or seeing questions in media asking how one is faring  during the COVID  lock down annoys me; rather than making me feel that I have now lost social contacts I now realise that our social contacts before the current crisis and long after it is over has and will be deficient. Depressing that I can do so very little about the matter. At this time I am content.

Chapter 558 - Simply a Puzzle

The OT that Wild Dog Carer arranged visited on Monday 11th May, along with the EN from Wild Dog (I asked her to be involved). I showed her the dismantled watch and tea strainer, she asked questions, noticed the jig saw puzzle on the table and was told she doesn't like them and throughout the hour consultation the knitted panel (I think I described this before) was being picked apart. As the OT finished I showed her one of the quilts made some years ago; whether the OT was impressed I don't know. The OT left saying a report will be sent with suggestions  for useful hand exercises. I must chase Wild Dog Carers in case they are holding the report.

A few days later she voluntarily began moving the jig saw pieces still on the table. She was not very successful, so I offered to help by assembling the border pieces. Last Tuesday immediately after breakfast I selected a Dance for PD stream for her to participate in for an hour after which we both attempted more of the jig saw puzzle for two hours up to lunch time and after lunch she watched a series on NetFlix. She suffered minimal dyskinesias that day. The same routine on Wednesday, again minimal dyskinesias. It dawned on me that perhaps filling her mornings with Dance for PD and jig saw puzzling may be minimising the dyskinesia, similarly to rolling her onto her side when dyskinesias begin in bed. On Thursday the dyskinesias were very bad from breakfast time and for no specific reason I omitted to place her in front of her PC for a Dance for PD session and I later found her cleaning the floor in front of the sink so I enticed her to the jig saw again. The rest of the day she was bothered by severe dyskinesia. Friday she did Dance for PD immediately after breakfast followed by two hours of jig saw, with me helping her, and the day was quite reasonable for her. I have realised that in attempting to fit jig saw pieces together, she concentrates on making the pieces fit together rather than matching colour and lines of the picture even when I attempt to explain how to match the pieces; she seems unable to recognise the patterns on the pieces.  Now it is Saturday she is following a Dance for PD class for which she needs the arms of her wheelchair removed; rather dangerous.

Just after lunch on Tuesday she fell forward out of the wheel chair; I suspect while the squab of her wheel chair sloped slightly forward she had leaned down to "clean" a spot on the floor and rolled out. She called out to me, fortunately I was just in the lounge room. I was able to lift her using the yellow handled belt back into the wheel chair with little difficulty. That same morning she said she was sorry for waking me during the night (but she hadn't) when she was having "nice dreams about our house in Newcastle (we left there 46 years ago) and that brought tears to my eyes.

Last Sunday between 0200-0600 I watched the live streaming of Parkinson's Foundation's "Care Partner Summit" from the USA. I have begun re-watching segments from the archive of the summit, in particular the segment on cognitive changes.

I must close this because I no longer hear the piano accompaniment to the Dance for  PD. This morning I ordered three wooden puzzles for her.

Chapter 557 - Fine Tuning

She has been awake lately, leg dyskinesias happening, when I get up once or twice at night on my old man shuffles to "my" loo. I have woken in the early hours to rattles from her bed frame while her legs kicked. The neurologist advised adjusting duodopa rates slightly in fine steps days apart to permit her symptoms to stabilise before another step. Her night rate had been increased to 3.2 ml/hr some short time ago until the night of Monday 4th May when I increased it to 3.3 because she had begun to complain of her legs being "stiff"of a morning and her body or legs were "twisted". Confusing, since that suggests to me her dose rate maybe too low, yet her bursts of dyskinesia are frequently severe. So on Friday night I made a large change in the night rate by dropping it down from 3.3 down to 3.0 ml/hr. The daily rate has been kept at 7.0 ml/hr. Yesterday was the best day for both of us in a long time; I set up Dance for PD for her, then she sorted the last load of washing in our bedroom but became distracted re-organising clothes already in position then after lunch I returned her to complete the job, although there remains shirts to place on hangers. She returned to attempting to stitch together those knitted panels worked on for what seems like weeks now. The evening meal shortly after 1700, then to bed at 1800 after the Wild Dog Carer arrived after which she read one of her old Mills & Boon novels, actually reading after I turned my light out. I had a carefree, most enjoyable day watching the live streaming of the Yarra Valley Writers Festival. She did not even call me for trips to the loo, each time I checked she said she had taken herself. Most remarkable!

Except for this morning. Although dyskinesias began as I replaced the duodopa cassette and the pump batteries (routine job on a Sunday) they quickly ceased and she remained asleep. I flushed the side port. She remained asleep. At 0730 I was unable to wake her beyond the semi-conscious stage so sliding her from bed to commode was difficult. She was hardly responsive when I needed her to push down with her hands on the commode arms  to enable me to remove her overnight pants and pad. She did not piddle. I gave her a bolus of 2 ml. Onto the pedal machine she was limp and half awake. She drank a little water from one of her drink bottles. She was still drowsy when the Carer arrived at 0750. Her shower was un-eventful but I was needed to use the lifting belt around her waist to stand her into the Sara Stedy for the Carer to pull her pants up. She ate her breakfast of buttered scone, diced fruit and orange juice without difficulty. I checked on her a couple of minutes ago for her to do Dance for PD. She had gone to sleep in her wheel chair. I will increase the night rate to 3.1 ml/hr this evening. If her mornings are then reasonable and stabilise at either 3.1 or 3.2 I will then begin to reduce the day rate slightly. I have great difficulty recognising ideal settings for other day-day factors of ordinary living seem to change the impact of medication. Time to check on her again.

Chapter 556 - Just a Bad Morning

I shouldn't be writing (with those words I stopped typing yesterday, hoping to finish today). Yesterday she interrupted a shower saying she needed to return to bed. So the Wild Dog Carer and I dried her, pulled a clean nightie over her head, then partially put her incontinence pants and pad on while seated on the commode/shower chair before I slid and rolled her onto her bed. From there the Carer rolled her backwards and forwards until the pants were in position, the duodopa pump was reattached, she relaxed, the dyskinesia eased and she dozed from 0815. By 0830 she was sound asleep yet when I checked at 0900 she was awake, wanting to get up. So I had her stand into the Sara Stedy after I slipped a pair of slacks onto her legs and fitted socks and shoes and once seated on the pads I helped her into bra and blouse. Then to breakfast. Then I encouraged her to do some Dancing for PD down streamed from New York. Later she began cleaning the bench top in the kitchen. I helped her wipe the kettle and toaster, took away the unused blender, re-positioned the new blender, discouraged her from cleaning inside the dish washer (memories of the inner door seals on the oven being destroyed), suggested she clean some marks on cupboard doors, then some marks on the wall and by then it was lunch time. After lunch a windy walk, she in the wheel chair, up to the hall for the mail. A few days ago we borrowed a 500 piece jig-saw from the hall. I was hoping it may gain her interest and keep her entertained; unfortunately, the complexity and frustration discourages her, perhaps a simpler puzzle with less pieces may be better.

A week ago I contacted Wild Dog Care about an OT visiting to advise about toys/hand crafts that may interest her; I included images of the wrist watch and the tea spoon she disassembled. An OT as well as the EN from Wild Dog Care will visit next Monday. I told her that the OT was coming to check her hands which are frequently cut and nicked by scissors and such.

Some weeks ago the Wild Dog Carer scheduled to arrive at 1900 to help her toilet and dress for bed was 12 minutes late on an evening when she was stressed and eager for bed. Although I said nothing rude to the Carer, I was accused of abusing her, so I lost control, walked passed her to open our front door, saying "Get out and don't come back!" Then to compound the matter, when I rang the Wild Dog Carer after hours emergency number to complain I received "This number is unavailable" message, on our landline and several mobile phones. So I added that to my complaints in an email. The problem was an error in the last digit of the phone number written on the cover page of the new folder delivered from Wild Dog several weeks earlier.

I had a phone consultation with the clinical psychologist a few weeks ago; not all that satisfactory because I failed to raise matters that bothered me. We will hopefully have a Zoom meeting in a few weeks, and I hope that provides more of a clinical atmosphere than a mere phone call. Our Dementia Carer's group meets weekly now via Zoom; a satisfactory way to maintain contact.

Rolling her onto her side when dyskinesias happen in bed continues to be the only relief; on the other hand, returning her onto her back or sometimes her left hand side helps should dyskinesias begin again on when on her right hand side. At times she "feels twisted", needing her body to be straightened, her legs repositioned or her bottom moved slightly when seated. Perhaps I have never mentioned that she is unable to move or wriggle her body; she can't roll her shoulders or hips, can't roll in bed, can't easily move her legs even though they kick like mad with dyskinesia. Those little unconscious movements I know I do to "get comfortable".

I sense my glassful of reportable incidents is only half empty (or full?) yet I can't remember the mental notes I made, even though skimming through my daily note book brings issues to mind that are just too much effort to write about.