Chapter 578 - Bothering Matters

 Today she has been attempting to remove threads entangled around the wheel axels of her wheel chair and her walker (used simply as a trolley these days on which to keep stuff). She was doing this between 1000 and 1200. At times rubbing marks on the timber floor.

I had requested Wild Dog Carers to send someone to do a "Domestic" (cleaning) at our place this afternoon so I had her attempt to remove all the rubbish off the floor in her sewing room so the vacuum cleaner could be used in there. I cancelled the Domestic and other services from beyond Sunday when it became obvious that my throat was on fire and another COVID test was in order; thankfully the result was negative again. Anyway, now an hour after my requested time for the Domestic no one has arrived even though I rang 1/2 an hour ago, leaving a message on their answering system. Looks like I will need to put clean sheets etc on our beds before going to bed tonight, a chore I hate doing and leave for a cleaner.

The rubbish on the floor of her sewing room mostly consists of the tatters of chopped up T shirts she decided last week to cut into small pieces for "doll clothes". Not cut into neat rectangles, just simply hacked. This activity digressed into pulling threads from the edges of pieces to create frayed edges, and doing so left many threads on the floor to become entangled in the wheels of the wheel chair and walker.

One day she wanted to hang our washed clothes in the cupboard. The task began alright until she noticed that items hung a week or so ago were not hung very well so spent a couple of hours making corrections. wasted time and effort from my point of view.

A week ago she came across a zip-locked plastic bag with a very large white sticky label attached. The label needed to be removed, I don't know why. She worked at picking off the paper and the glue, sometimes applying water from one of her drink bottles, for at least 4 days; one day I timed the activity for 4 hours. I'm unsure whether the task was completed or the bag thrown out.

Yesterday I logged her into a Zoom session of Dance for PD. Perhaps the music used, perhaps the voice of the woman leading it, but about half way through she began to feel ill, she was "floating", needed "to go to sleep" so as the session ended I placed her on her bed where she slept dyskinesia free for an hour and a half. I noticed during the session she attempted the arm movements but hardly ever the leg movements.

While the services of Wild Dog were cancelled for Monday, Tuesday and Wednesday this week she has not been going to bed about 1830, rather, after I put her into night clothes, she stayed up, in her sewing room, destroying pieces of fabric as described above. I found I was able to stay awake as well, pottering about until at least 2130 and I think we both had a better night's sleep as a result. So tonight when the evening Wild Dog evening service  begins again, I will ask the person just to change her clothes and incontinence pants and pad and return her to her wheel chair. Then I will put her into bed at an appropriate time.

The scab on the knuckle on the toe (equivalent position to an index finger) still has a scab on it, so each morning I place a dry dressing on it and take extra care that her left foot is not dragged on the floor. Her left foot is the so-called dropped foot on which the toes curl under. She wears socked 24 hours each day as well to prevent rubbing, as on bed clothes, to prevent damage.

While I'm out on Friday afternoons for 3 hour respite I have again started to buy her "puzzle magazines" which she often picks up to solve the crossword puzzles. Perhaps I'll subscribe to them for postal delivery; that will give her something to look forward to.

I have had no further feedback from the visitor scheme hoping to find someone to visit her. Perhaps no one wishes to spend time with someone in her deteriorating state.

Recently I bought a small hand held vacuum cleaner having a nozzle suitable for sucking insects and dust out of the gutters beneath sliding doors. She has spent hours attempting to wipe the gutters at our sliding back door clean by using damp tissues. The first time she used this new cleaner she decided to find out what had been sucked into it, so she disassembled it on her lap, spilling fluff, grit and insect carcasses all over herself. We once had a similar cleaner that she destroyed by pulling the filters and flaps out of it.

We have several tall columns for stacking DVD and CD disks into. Periodically she will take all the jewel cases out of a column, open the cases, take out the disks and after inspecting them, return them to the cases and then back into the columns. This job may take all day, for no particular purpose.

Last week she sorted heaps of magazines, ripping out any pages she wished to keep. A day or so later I was asked to throw out the  resulting piles of pages.

Her laptop-like machine and its associated large monitor are kept in our dining area on a wheeled trolley. From time to time she likes to sort the cables between the devices so that they do not resemble spaghetti. Invariably minor repairs are required to return the system to a working state.

Some time ago she made a small roll pillow, maybe 300mm long and   100mm in diameter. It was ideal for placing behind her neck while seated in the wheel chair. One day she found something wrong with the hand stitching she had done at one end so she pulled the bad stitching undone, but did not stop until the other seams were undone as well and the pillow was no more.

Chapter 577 - A Week that Was

 On three mornings this week I have returned her to bed with bad dyskinesia prior to a Wild Dog Carer arriving to shower her. I then shower her about 0930 after she has slept and the dyskinesia is absent. Except this morning when the dyskinesia would not respond to gentle rubbing of her legs and/or rotating her in bed. I suspect this is a deteriorating condition. Most nights now I either reposition her in bed after making an old man's visit to the loo or the dyskinesia of her legs rattles her bed enough to wake me. Last night I made no notes about repositioning her, so I suppose I didn't, but I'm sure the noise of her legs woke me several times but due to the short duration of the dyskinesia I did not get up to attend to her; or perhaps I returned to sleep myself without attending to her. Now late on a Sunday morning I am very tired, frequently yawning, so I will simply transcribe my hand written notes of today, so far.

0500 Talking in her sleep.

0600 Occasional bursts of dyskinesia.

0613 Asleep on back.

0618 As I moved the pump from under her a burst of dyskinesia began. Flow rate adjusted from 3.0 to 6.5 for day time. Morning dose of 1.0.

0621 No dyskinesia. I showered.

0640 Asleep on back, no dyskinesia.

0650 Burst of dyskinesia while still asleep.

0710 Burst of dyskinesia and holding the grab rail over the bed.

0725 Slid her from the bed onto the commode. Bad dyskinesia. Decided to return her to bed and not shower her when the Carer arrived.

0750 Carer arrived and helped my try to rub her legs  and rotate her in attempts to calm the dyskinesia. At times her legs calmed then dyskinesia began again. Gave her sips of water.

0830 The Carer left, she had another job to attend to, but said she could return later.

0845 Replaced the Duodopa cassette and the pump batteries (routine tasks). More sips of water. Dyskinesia continues.

0900 Dyskinesia continues, has been on back, raised in a sitting position for about 30 minutes. I decided to turn the pump off for 30 minutes to see what impact occurred. Left hip was sore so rolled her onto RHS.

0905 When asked whether she was better or worse she replied "worse". and the dyskinesia was noticeably faster.

0910 She asked to sit up so rolled her onto back and raised her head. Dyskinesia continued strongly.

0912 Restarted the pump at 6.5 and gave a bolus dose of 2.0. More sips of water.

0916 Pump returned from "Dose" to "Run" mode. She said she was "feeling just the same." Asked whether I had had breakfast.

0920 She said she will have her usual 2 crumpets for breakfast.

0927 Ate 3/4 of a crumpet with melted cheese.

0932 Dyskinesia suddenly stopped

0934 Some dystonia noticed but no dyskinesia.  

0937 Wants to piddle so slid her onto the commode.

0938 Sipped water, piddled and dyskinesia began again.

0949 Returned her onto the bed, fitted some incontinence pants, laying on her back, wanted only a sheet covering. No dyskinesia.

0951 Seems asleep.

1006 Not asleep, on back, inspecting her fingers, no dyskinesia.

1030 Awake, wants to get up, no dyskinesia.

1034 Transferred her to the wheelchair and to the backroom to finish her breakfast, no dyskinesia.

1100 Had completed breakfast, no dyskinesia.

1200 She was repositioning the recliner chair, no dyskinesia. She remains in her nighty, I will not shower her, perhaps may do so when the Carer comes this evening.

The writing I intended to complete this morning will not be done and I feel like a siesta about now at 1230 and she has no dyskinesia.

At 1300 as I gave her the usual fruit smoothie and biscuits she has for lunch, she was humming.

The following was added at about 1030 the following day, 16th November, to complete this day's story.

1520 Dyskinesia began  about 1/2 an hour ago. Feels stiff, gave a 2.0 ml bolus.

1530 Dyskinesia not visible, she says her feet are tingling, has them up on the recliner.

1535 Dyskinesia began again.

1555 Vigorous dyskinesia.

1600 Increased flow rate from 6.5 to 7.0 ml.

1610 Dyskinesia has stopped, Tingling in both feet.

1640 No dyskinesia.

1720 No dyskinesia.

1800 No dyskinesia. Ate her evening meal.

1830 No dyskinesia. Replaced cassette, flushed the side port with 2x20ml of water, retaped and cleaned the stoma, good colour. The Carer gave her a sponge wash and put her to bed.

2012 No dyskinesia.

2030 No dyskinesia. Flow rate reduced from 7.0 to 3.2 ml/hr (I assumed night rate needed to be proportionately raised as well).

2305 She woke me to arrange her bed clothes and roll her onto her RHS, no dyskinesia.

Monday 16th November

0440 Dyskinesia as I came back from a loo visit. Rolled her onto her back and the dyskinesia stopped.

0609 She was awake with dyskinesia. Morning dose 1.0..

0612 No dyskinesia. Pump to new day rate of 7.0 ml.

0615 Dyskinesia began, rolled her onto her RHS, dyskinesia stopped. She said she had been "awake for ages and had a good night's sleep". So did I.

0700 Asleep, no dyskinesia.

0730 Awake, transferred her onto the commode, a piddle, then her feet onto the pedal machine, no dyskinesia.

At about 0750 the Wild Dog Carer arrived to shower and dress her. 

Up until now, 1100, we are enjoying a normal day without dyskinesia. I assume her state will remain "normal" until she acclimatises to the current dose rates, when I will need to experiment yet again to find a happy set point.

Chapter 576 - Another Humming Day

 I find that on days when she hums a lot, frequently, sometimes continuously, that those days are good ones. Much less dyskinesia (by observation only because I am not burdening her with the FitBit since professionals are disinterested in the results) on these days and she is less stressed. I assume her current dose rates, day 6.5and night 3.0, cause her to feel better although I'm sure weather conditions play a part as well as her general health and stress levels. I also assume her dose rates will need to change again. Since she is usually in bed for about an hour each morning after I change the pump to day rate, I tend to omit the Morning Dose of 1.0 ml, since I assume it is meant to be a "kick start" to get her mobility going and gradual acclimatisation to waking hours maybe better for her.

Concerned that a knuckle on one of her toes was not healing well I had the Wild Dog nurse visit on Thursday rather than take her out in the rain to the doctor's surgery. I had not considered that sort of help until the Wild Dog carer of the night before mentioned it. I had been applying Betadine, liquid then ointment, but the nurse used a small piece of Inadine which is more suitable and she left me the remnant of the sheet and I have since bought some more for "next time". I had used surgical gloves to keep the feet dry in the shower, tried Glad Wrap suggested by the nurse (failed for me) and bought some whole leg protectors which are effective if I securely tape the things to her legs. When I dressed the bad toe this morning a scab had formed over the area and it was no longer moist.

I think I noted recently in a previous chapter that I had the Wild Dog Care nurse ring each Monday to chat with her for a little social contact. Some years ago I approached the Red Cross via Wild Dog Care for someone to visit her but without success. Volunteer visitors in country towns seem hard to find. Recently I was made aware of The Community Visitors Scheme, an "initiative of the Australian Government". I was contacted by a co-ordinator in another state. Volunteer visitors in country towns are still hard to find. Last week I was contacted by a support person from another organisation in another state able to offer a tablet based Skype system as a 21st century substitute for an in-person visitor. Appropriate paper work was emailed to me which she completed after I discussed the matter with her. She was quite positive about the idea.

To help her call me when needed, I bought two door bell sets. The KISA phone requires some fumbling on her part to call me, simple as the phone is. Each door bell set has one press button and two chime boxes. One press button is glued onto the frame of her wheel chair ( I removed the earlier button and chime) and one of its chime boxes is in my "front" room and the other here in my "dungeon". The other press button is glued to the fan control attached to the monkey bar over her bed and its chime boxes are similarly positioned in "front" room and "dungeon". Each pair of chime boxes plays a different dirge so I know whether she calls from her wheelchair or bed.

While dabbling with family history on Ancestry last week I decided to contact a UK lady via the messaging system about some small matter. To my astonishment, I discovered that I had contacted this lady 10 months ago about a related matter, even promising to send a photograph of interest to her. Honestly, I still have no recollection of ever having exchanged several messages with her! Is this a not-so-subtle indication that my cognitive processes are declining? In recent weeks I have made errors with medications, both hers and mine, that I assumed were due to the effect of the dose of "Man 'Flu" I suffered. Perhaps not. Of all the novels I read I retain very little, if anything at all of the plots, never the titles and a fading memory of authors even though I prefer to read a series in order of publication, 25 novels in the Jack Reacher series just completed, at a rate of one a fortnight. They are simply instant gratification and entertainment, as were the 3 or 4 movies I watched while sick with Man Flu. Of consolation however are my stable Lumosity scores hovering around 10 below my peal LPI of 1425.

There were other matters I intended to diarise but I can't remember them.

The writing above was interrupted to watch Biden and Harris give their speeches as president elect and vice-president elect of the USA. Both were moving, positive speeches in comparison to the self promoting shit that spilled from Trump throughout the last four years. I have yet to finish reading "The Storm Before the Calm".

Chapter 575 - Peace Lily

 After writing a few emails this morning I went to check on her. Hands in the soil of our large Peace Lily, dirt scattered on the floor, she was hunched forward, hearing my approach she remained very still, quiet, not reacting to my query, like a puppy that knows it shouldn't have piddled on the carpet. I suppressed my flare of anger, instead wheeling her into the bathroom for her to wash her hands, there were grains of soil up to her wrists. While she was there I took several photos of the lily, leaning to one side in its pot, its four blooms limper than normal. Perhaps the second or third time the lily has been "trimmed" in this past week' the last a day ago when I used a length of bamboo she had removed from a cane basket as an encouragement for the lily to be more vertical. Leaves she sometimes removes are often replanted in the pot in the hope they will grow.

I placed the lily, as well as the smaller one given by her younger sister when years ago she was in hospital receiving the stoma for the duodopa pump, in the second bathroom where several mattresses are stored. The small lily has lived on top of a book case for quite awhile to avoid "pruning" exercises. Realising that if she really wished to, she is able to get into that bathroom, I later relocated both lilies onto the laundry bench top. I dumped a quantity of used Duodopa cartridges at Community Health before buying fish and chips for lunch today; she didn't eat the chips.

I lack the stamina to describe the events of the last couple of weeks, I am depressed, I am tired. But a few brief notes. I ordered Duodopa on Thursday 15th October from our local pharmacy while we had one week's supply in hand, and was told late the next day there was "no stock" and by the following Tuesday that there was no status given for the stuff. Normally Abbvie, the supplier, provides next day delivery for this stuff that costs $11,000 per month. Our local pharmacy told me that Abbvie no longer supplied directly to them, but through a distributor called API. I contacted our West Beer Clinic Nurse who raised the matter with Abbvie. An on-line search showed me that API was the owner of the franchise name of Priceline that our local pharmacy operates under. The Duodopa arrived on Thursday 22nd October while we had one cassette left as a result of using each cassette for 16 hours a day rather than making replacements each morning and evening as usual. The stress inflicted upon me will not happen again without serious publicity consequences for Australian Pharmaceutical Industries Ltd.

The Friday following the Duodopa saga I came down with a version of influenza. Four relatives from Big Smoke visited us on the previous Monday; I blame them for infecting me, even though none showed signs of illness. And I had remained free of disease throughout the year until now because since COVID, I have avoided the local clubs & coffee shops. In case I had COVID symptoms I cancelled Wild Dog Carers for all services from Saturday and had a COVID test at our local hospital. This meant I had showering and dressing to do until my COVID result was found to be negative on the Monday and care services resumed on the Tuesday and on that day I visited our GP who gave me a course of antibiotics, not yet completed and my bloody, yellowed sinus snot has almost dried up now.

I made a number of mistakes with her Duodopa management during the past week, fortunately there have been no lasting problems caused. I'm worn out and very tired. Caring is not a good role for one both ill and aged.