Chapter 552 - Mostly Living a Normal Life

Well, a normal life for us at this phase in world history. I recommended to a friend that "Year of Wonders" by Geraldine Brooks be read while remaining in place at home living through COVID-19. In her novel Brooks describes events in 1666 in a small English village; its residents had similar feelings and beliefs to us in 2020. Only technology has changed.

This morning I found her planting broken off pieces of the Peace Lily, the large one sitting it its pot on a roll around support, crumbs of potting mix scattered across the floor. I immediately wheeled her into the bathroom to wash her hands then took her to the bedroom to hang her clothes, really  to keep her busy, as I had put away the majority of the washing yesterday. While she was busy, I wheeled the Peace Lily into the front room where she is unable to take her wheel chair. I had warned her yesterday when I found her using a large knitting needle to make holes in the potting mix to plant the broken pieces.

Yesterday I rearranged the medical contents, bandages, headache tablets, pain relief ointments, etc, in the built in cupboard in the living area so that I am able to locate things without needing to buy new items. Later I found her using a long handled set of kitchen tongs to relocate items on shelves she was unable to reach. I hid the tongs on top of the kitchen cupboards.

She often looks into boxes, drawers and shelves in her sewing room for no other reason than to "see what is in there", things she had packed away in recent weeks. A morning or two ago she spent hours sorting through safety pins.

A week ago she removed the contents of all the cardboard containers holding foil, cling wrap and grease proof paper in a kitchen cupboard. When I asked why she was doing that she said she wanted to put knitting needles in the boxes. Needless to say, I returned the original contents into the boxes, all now somewhat battered.

At least a week since she last rubbed fluff on the sewing room carpet and pulled lengths of string from the carpet substrate from beneath the plate on which the cupboard doors roll. She says the carpet is "rotten" because she is able to damage it so easily while cleaning.

In checking just now how she is coping with hanging her slacks and tops I found her checking how well the clothes already hanging in the cupboard. You see, I don't hang clothes very well, especially her slacks, and she may have found some slightly crooked, not to her liking, so rather than hang the items in the clothes basket, she side tracks herself. So rather than complete the task in some 15 minutes, an hour has elapsed and only one or two items have been removed from the basket. Anyway, the activity will keep her occupied until lunch, an hour away.

Another day, she ripped to shreds numerous hand made birthday and Xmas cards; she was unable to tell me why. Personally, because people have applied themselves to make such things, I always hesitate to throw them out.

One morning she was intent on attacking the shower recess with a bottle of vinegar. I retrieved the bottle, instead giving her a little vinegar in a small container. After applying some of the vinegar she quickly left the bathroom, seemingly to avoid the fumes.

Every so often she attacks "marks", usually ones she has made, on the timber floor, using knives, forks or spoons.

She spent one whole day trying to unpick a knitted panel, made by someone at the club she once attended at Wild Dog, shredding the multiple strands. Next morning I found the brightly coloured piece in the rubbish bin. When I queried she said it was rubbish. I wonder why the panel needed to be partially destroyed before throwing it away, Several times she has knitted panels with very thick wool, only to pull them undone when finding a dropped stitch or two.

More seriously, last Saturday 21st March I discovered that the skin several cm's above her ankles on the rear of both legs was damaged, probably from scraping her toe nails on her legs during dyskinetic sessions while laying in bed at night with bare feet. I used my Dremel device to remove sharp edges from her toe nails then protected the damaged skin with band aids. Later the band aids annoyed her so I have since taped non-stick bandaging over the areas. I have applied antiseptic cream and Betadine to the areas but I am bothered that the areas have not healed. She now wears socks to bed each night. If not improved by Monday I will take her to the clinic nurse.

After half an hour I checked on her clothes hanging; she was still sorting and correcting the stuff already on hangers. I rushed her through that and now she has started on that in the clothes basket.

Almost time for lunch. There is more to write. But at this time I won't continue my self imposed chore.

Chapter 551 - Planning to Avoid Corona

After being showered on Monday she wished to return to bed where she remained for about an hour. When she rose she did not wish to attend the speech therapy group so I rang with her apologies. That night I decided to not give her chocolates to eat on going to bed and during the night and since then she has not needed to return to bed, so I presume there may be a link between high calorie food during the night and her need to return to bed each morning.

She attended Dance for Well Being on Tuesday morning. That may be the last for quite some time because the organisers decided later in the week to discontinue such groups in light of the spreading Corona Virus.  On returning home she began destructing the Peace Lily again; I found her with soil over her hands and one the floor with several small leaves. I later walked her around the village in the wheel chair and while we chatted to another resident she began pulling at a thread on the brim of her sun hat until a thin wire stiffener was dislodged. I must try to repair the damage before she wrecks it completely.

I attended a Carers' Meeting for an Enduring Power of Attorney presentation during my respite hours on Wednesday and as a result contacted our Hot Air City advisers to clarify our Enduring Power of Attorney and Guardianship documents. They are in order; I was confused by  both documents (two for each of us) being drawn up in the ACT for use in NSW. In the ACT the one form titled "Enduring Power of Attorney" is used for both Attorney and Guardianship but in NSW two forms are used; so the NSW form was used for Power of Attorney but the ACT form, with Power of Attorney provisions crossed out, was used for Guardianship. There must have been logic applied to doing this but it escaped me. I really must finalise our Advanced Care Directives to have all this bumff out of the way.

On Friday she had an appointment at the optometrist, this time we went with slider board and hand grip belt for her waist. I only needed the latter to move her from her wheel chair onto the reclined bench so that her eyes could be examined using the optical machinery. The optometrist was puzzled by the inconsistency of the results, which may be due to the patient's condition and being vague in answering "Is this better, the same or worse?" questions and multi-focals may have been prescribed but cheap glasses of 2.5 magnification should be satisfactory. The optometrist seemed surprised when I produced a Mills & Boon that she is able to read without glasses at all. Anyway, her eye pressures were 12 and 13, even after dilator was applied, and the maculars  were OK.

She seemed in a slight stupor yesterday morning as I got her out of bed before the Wild Dog carer came to shower her; I thought she may be entering on of her coma like phases but it passed. In the afternoon she decided the carpet at the bottom flanges of the sliding doors of the built in wardrobe was "rotten" when she discovered that when she abraded the carpet hard enough to bring the pile to the surface as fluff (in her terms "dirt") she found thin strings appearing which she tugged at until they needed cutting off. The only way to prevent further damage was to wheel her out to the back room to the TV. I pushed the carpet edge back beneath the flange.

In light of the Corona Virus I sent an email to middle management at Wild Dog Carers asking what procedure would be implemented if either of us developed cold/flu symptoms. The reply was diplomatic but not very specific other than staff have been told not to report for work with any cold-like symptoms, they are following guidelines, will help with sourcing if we need supplies such as toilet rolls.  We decided that we will cancel my 5 hour Respite sessions each Wednesday since my sitting in either of the clubs or coffee shops reading New Scientist and novels maybe too much social contact. So yesterday I sent an email to Wild Dog Carers to cancel the service. We had intended to go to Kmart this morning to buy her some bras and a pair of reading glasses but decided we should stay home. Coincidentally, a sister rang her about meeting at the club up the 4 lane again but she declined. I then sent them an email saying why we are minimising our social contact in such public places. We are neither scared nor in a panic; just that we are vulnerable in that she is disabled and dependant upon me and when either of us is infected with anything causing the slightest signs of the sniffles we will be in a precarious state. For instance, if I am ill unable to take care of her where does she go other than residential care?, and if Corona is the cause, isolation comes into play. I doubt that Wild Dog Carers will don HazChem-like gear at our front door to attend to her needs. So we raise the drawbridge early.

Chapter 550 - We Are Tiring

As she has asked on several mornings recently, she has wished to return to bed after showering this morning. She is turned onto her right hand side, her legs gently rubbed until the dyskinesias cease when she sleeps. Waking about 45 minutes later, I dressed her and gave her breakfast. Later when I tentatively asked whether she wanted to shop, she said yes. So down the street to Target where she fondled most of the clothes on "special" selecting two tops and a pair of slacks, although had I not moved her on in her wheel chair, we may have spent several hours there. As it was, she asked to inspect the men's clothing, none of which I needed, then after we circumnavigated the remainder of the store, we dropped her items in the car and walked down to the shopping centre. These days I leave the car at Target in the lone Disabled slot from where I push the wheel chair further down the street. I had medications and supplies to collect at the chemist, after which she insisted on the paper shop where she needed three magazines. After that she was content to go out to our neighbourhood cafe for a milkshake and a slice of rocky-road pie. The chemist items went onto our account, but we paid out $40 at Target, $20 at the paper shop and $20 at the cafe. We did not bother with lunch on arriving home. I spent the afternoon reading the last few chapters of "Book of Colours" while she fiddled with clothes, trying to figure out how to repair some damage done to a blouse some time ago. I am finding pushing a wheel chair around the shops has become very tiring; perhaps a two seater scooter is needed?

Our yet to be used sling lifter has been parked in a corner of her sewing room. She has decided that it needed to be re-positioned several times this week; I return it to where I wish it to be. On Tuesday afternoon while I was at the doctors' (my left ear is infected again, different anti-biotic drops prescribed this time) she sliced the palm of her left hand while attempting to make an eyelet in the strap of a shoe. I returned home to find band-aid wrappings scattered about and a wad of them on her left hand. I took fright when I inspected the hand, I saw white matter at the bottom of the cut. Ignoring her loud protests, I took her to Emergency where a doctor thought the cut not too bad, best not to have stitches so applied some sort of glue plus some adhesive strands across the cut. The wound is healing reasonably well without infection. While waiting her dyskinesias were quite violent, she poo'ed her pants, begging me to take her home. At home I showered her and dressed her for bed before the Wild Dog Carer arrived.

I have begun asking questions of the Wild Dog Carers whether they have been advised what to do should one of their "clients" show 'flu like symptoms during the current introduction to the Corona Virus. None have said that their management have given advice about the matter. Perhaps an email is needed as I am sure to get a dose of my annual "man 'flu" which I expect will discourage any care assistance.

Chapter 549 - Slowing to a Dawdle

There is no conflict between my writing here this morning and my taking her down the street. She just does not wish to go; I'm too lazy to insist. And pushing her wheel chair along the same street and in and out of the same few shops is rather boring. Earlier in the week I suggested driving her to the big craft store at Q to buy some "pancake" thread that others had told her was very pretty to knit; but no, she didn't wish to go. The same suggestion yesterday received the answer she didn't like the trip. Is my driving that bad or is her spatial problems becoming worse?

Sunday 16th Feb: At 0625 two tone error beeps from the Duodopa pump after changing the cassette may be due to cassettes being used straight out of the fridge. Nurses, when the pump was first fitted, used to carry a cassette in a pocket for a time to take the chill off it. I have never bothered to follow that procedure. Perhaps this pump is more sensitive to the gel viscosity. I now try to expose a new cassette to ambient for a short while before use.

Monday 17th Feb: At 0915 I put her in bed on her RHS because of continuous strong dyskinesia; I rubbed her legs. She woke a little before 1000, cleaned teeth, onto loo then at 1100 we attended an appointment with the Speech Therapist at Community Health, referred to by the PD Day Clinic at hospital C. I think I, rather than her, spoke too much for we left there at 1215. Back home at 1430 she asked to lay down again so rather than bed, I reclined her in the wheel chair.

Tuesday 18th Feb: Her start to the day was no worse than normal but she didn't wish to attend Dance for Well Being today.

Wednesday 19th Feb: Her dyskinesia was bad at 0615 when I began the procedures with the pump. At 0710 I turned the pump off in the hope her thrashing legs may ease and had a shower. On my return her legs were worse. The pump was started again. I gave her two Soluble Panadol to ease leg pains. Her elbow rested on the pump buttons stopping it. She went to sleep. The Wild Dog Carer arrived about 0755, some minutes late. Although my attitude must have suggested I was not having a sunny morning, the Carer came into the bedroom, saying in a very loud cheery voice (which is sharply pitched anyway) "Good morning ---, how are you today?", immediately waking  her and restarting the dyskinesia. As I began to rub her legs again, I gruffly responded "SHIT! I've only just got her to sleep and you've woken her!!!" Subdued, the woman left the room. I calmed the dyskinesias then told the Carer that I would shower her later, so she could go. The Carer asked whether she could be touched. Knowing that the Carer was about to touch her and pray, I said "Yes" and left the room; concern shown, care given, misguided perhaps but yet beneficial. By about 0900 I placed her on the commode then showered her, dressed her in disposables and a nightie and returned her to bed to sleep a little, for at 1000 she woke, wanting to get up. By this time, and since it was my Respite Day another carer had arrived. She remained in night attire all day. I left her with the Carer, going for lunch  between about 1100 and 1300. She was well enough to attend a dental appointment at 1550, although we had to wait half an hour, about which I became rather annoyed.

Thursday 20th Feb: An average morning for a change after reducing her overnight flow rate from 3.3 to 3.0. Since she had a Podiatrist appointment at about 1230, I suggested we have morning tea at the W Club, then the appointment. We did that, deviating via her favourite junk shop now into the 50% era of its closing down sale before returning to the club for "lunch", then home. All well until was woken at 2300 when she began yelling, kept referring to a puzzle book. I repositioned her in bed, calmed her, rubbed her legs so by 2330 I returned to bed myself.

Friday 21st Feb: An appointment with the Optometrist as a follow up after her eye procedures. Her eye pressures were acceptable but there was some doubt about her vision measurements in determining whether she may be aided by reading glasses, for as had been realised by the ophthalmologist, one eye has an error due to the cataract procedure. She was unable to sit in the recliner to have the examination made using the complex piece of hardware normally used, so was performed by hand. Another appointment for 3 weeks was made when I will go prepared with slider board and lifting belt. Meanwhile I am to apply a gel onto her eyelids each night before she goes to sleep. Also I'm giving her the other eye drops and spray three times each day. At 1600 hallucinated that a woman was attempting to mount a bike out on the street.

A short interlude. I just returned from checking to see whether she was OK. She was, but in our bedroom having removed everything off of and out of our bedside cupboards, including phones as in landline and emergency, and about to ransack the "nursing station", a roll around with drawers containing dressings, tapes,  cotton buds etc etc as well as being intent on washing down all the surfaces. Well intentioned and hygenic of course, a task I have postponed for months, activity that will cause me endless delay and frustration in finding those odds and ends into the foreseeable future! Under protest from her, I wheeled her into her "sewing room" to finish sorting her shoes into ones that are wearable (as in remaining on her feet during dyskinesia events), ruined (by wear and attempted modification) and un-wearable to be taken to Vinnies'. I had to return to her sewing room the two large plastic bags of shoes destined for Vinnies' some months ago but which had been left in the car.

Saturday 22nd Feb: We met our old friends, in town for a religious event, at the S Club. Unfortunately the event lasted two hours and lunch orders had ceased by the time they arrived so we made do with coffee and cakes.

Sunday 23 Feb: She asked to return to bed following showering by the Wild Dog Carer. At 0945 she was dressed and in her wheel chair for breakfast. My notes show she experienced dyskinesia on and off all day and evening. She finds the FitBit around her right leg to be uncomfortable so I have not been fitting it. Not that it matters, no professional takes any more notice of the print outs than they do of my clumsy efforts to describe the matters in words, verbally or written.

Another short interlude: When I checked on her again, she was not sorting her Amanda Markos pile of shoes but quietly stripping the zipper out a small bag using a pair of small bladed snipping scissors as sharp picks to tear away threads; pieces of thread are all over her clothing. I have no idea whether she thinks she is repairing or modifying the small bag. I took some images; strangely she does not react even though it is obvious what I am doing.

Monday 24th Feb: I leave the air conditioner running, set to 21 Celsius, all night and most days, believing that controlling the temperature and humidity seems to be good for her. At 1000 I took her to the Speech Therapy group for the first time. Although I didn't need to, I remained during the session, not intending to participate although I did so a couple of times. Next Monday I will not stay and I must tell both this group and the Dance for Well Being group that I believe she is probably gains more when I am not present. She needs as much time as possible away from my interference with her activities. She asked to have lunch at the nearby new cafe

Tuesday 25th Feb: Dance for Well Being.

Wednesday 26th Feb: Respite Day. She gave away to the Wild Dog Carer some fabric pieces from fat quarters bought expensively some years ago. When asked whether that was OK I said yes; at least the pieces may be put to good use rather than thrown into the garbage by others when our time comes.

Thursday 27th Feb: After being showered by the Wild Dog Carer she asked to return to bed. I dressed her when she wanted to get up at 0930. At 1230 I caught her "tapping the soil into position" of the peace lily pot which due to weight and size has to remain withing her reach on the floor, Although I was assured she was not replanting pieces of the lily, there was a reasonable quantity of soil on the floor,

Friday 28th Feb: I was woken at 0015, dyskinesias were bad needing legs rubbed before returning to sleep. At 0545 she was able to wake me after she was awakened by the Alexa alarm, which had not woken me although it must have been sounding from 0530 so I had better not use it anymore. She again said she did not wish to drive down to Q. Our day was "normal".

Saturday 29th Feb: At 0020 she woke me talking in her sleep. During the afternoon she asked to lay down on her bed while a friend of mine was here.

Today Sunday 1st March: A normal day so far, see the short interludes above. Now that I have spent most of the morning writing this blurb I must give her a smoothie lunch and Tim Tams. I am too slow scribbling these few notes, which is frustrating, but on completion of the chore I am relieved and less depressed. Later I must sort the bedroom. Another week, another month has begun.