Chapter 525 - This Stuff Called Life Goes On

I have no idea who I referred to this blog many years ago for updates on our progression. Some still check it from time to time, most don't. She is never curious about what I write here; perhaps she has forgotten that I do so. But since I sometimes write things that may bother her please do not refer to the blog when in conversation with her. Should she ever ask to read any of this blog material I will not deny her access and will display it on her PC screen for her. After all, this blog is in the public domain. Her PC, an early MS Surface Pro, sits with an additional monitor on an over-bed trolley in our lounge room. She never attempts to use it, even to look at great grand daughter pictures unless I wheel her in front of it. Even so, I am ill at ease at such times because she can be inquisitive about pressing keys buttons and icons and I never was competent showing her how.

Her eyesight is part of her difficulty in using PC's, tablets and phones. Even with her newest phone, having a limited number of preset numbers and no screen she can have difficulties. And that's compounded when I muddle matters for her. Each evening, I place her phone into its plug in charger as well as my "old" phone (reserved for making and receiving calls, what else?) and my "new" phone (reserved for eBooks, radio, music, mindfulness, calendar, what else?) on their induction chargers. Some nights my phones aren't placed optimally and don't charge well. Some nights my phones update, reboot for unknown reasons. Anyway, some mornings she is unable to call me out here in my cold dungeon where I am seated closely to my small heater. This morning I compounded her problems by having her phone in my cardigan pocket, my "phone" phone in my trouser pocket but switched off, which I don't remember turning off, fully charged. I faintly heard her calling, needing urgent help to get to the loo. There was a problem of her phone becoming lost when it hung from the head rest on her wheel chair until I velcroed its case onto a cross member at the front of her wheel chair, and that works well so long as I remember to place it there.

On Friday after she saw her doctor about the blemish on her left cheek (now OK) we had lunch at the Soldier's after which she asked to go up the street, to Dimmy's where she bought some Mandala colouring-in books. Her attempts fail to keep within the lines but on the whole look very effective, especially when she applies glitter filled ink as well. We also went to the bank to sort out her account for which I had forgotten the online password as well as the phone number supplied to receive SMS (her new phone has no screen thus no SMS capabilities). Flashing her photo ID (since she has no driver's licence) we were attended to in a tiny office where a machine generated password was sent to my "new" phone because to my horror I found my "phone" phone was turned off because its battery was flat and I had to phone the bank person's phone from my "new" phone (it's number is hidden from prying eyes, including mine) so that it can be the one for SMS's for her bank account. I pointed out to the bank person that he was the only one to now have that phone number. With all this muddling I was sure the cops would have been called except for the fact that the two of us were two old aged farts and obviously confused.

During our visit to her neurologist at West Beer last Thursday I learned, both from the Clinic Nurse (on hand to replace the PEGJ fitting, rather than we attending the clinic in the bowels of the hospital) and Dr F that the three events that caused me to press our emergency button to summon an ambulance (and once a hospital visit) may have simply been she was "Off" (in PD parlance) producing a non-compos behaviour as well as very poor mobility. The same probably applies to her bouts of sleepiness. Dr F had forgotten to send a script for an Alzheimer patch following our last visit but will do so this time. I am to increase the Duodopa flow rates (above what I have already done of my own accord) along with applying the patches. I have set flow rates at 7.0 during the day and 2.5 overnight. I am sure she either adjusts to higher doses or her progression dictates higher doses.

She experiences few hallucinations lately; a stack of wood outside our house recently and a Queen Victoria likeness noticed in a pencil pine growing against a brick wall at the rear of the Soldier's.

I often find her examining cash register dockets and such like with a magnifying glass. While attempting to read a letter I had typed and printed she found the lines "too close together" to read.

My lower back is very painful each morning as I rise. Usually 30 minutes each morning on the treadmill helps a lot, except today when it's almost lunch time as I type this. I should discuss this with the GP but I don't wish to hear anything serious that may change our lifestyle routines. My problem is probably caused by assisting her to stand while pivoting my trunk to swing her onto the loo or commode. Having her stand into the Sara Stedy is easier on me because she expends a lot of effort in her arms pulling herself up, causing stress in her arms and shoulders. Catch 22.

Chapter 524 - Sleepy Head

In recent weeks she has been sleepy, sometimes asking to lay down on her bed. I have not taken too much notice of this.Today we had decided to take advantage of a weekly $20 food and beverage gift from one of the local Clubs, the club where I usually spend my Wednesday respites. I decided we would park in the Coles area, do a little shopping before walking to the club, she in the wheel chair. After several hundred metres as I turned into the main road into town I noticed her head drooping, one hand in her hand bag. She had gone to sleep, coming to once we arrived at the shopping centre but was not very alert. We deposited a container of coins, the small change I leave for her on the chest of drawers after shopping, in the coin accepting ATM. Her account is just shy of $2000. She was puzzled why a cheque for $99 I banked for her during the week was not shown on the balance slip, I had to explain such would only be shown on a monthly statement. Perhaps I will print that for her if I remember. Then I had her buy a Woman's Weekly at the newsagent, to give her something to read at the club. She was disinterested as we walked around Kmart. Then into Coles to buy some fruit and when asked, she said she had no lollies left at home. Such were added to the basket, then a sticky bun for her from the baker's. In Kmart and on the concourse we twice passed a couple from our village; she doesn't know them really, but showed no interest when I said a few words to them. Before we returned to the car and once out on the street I asked where she preferred to go, club or home. Home was the answer so we arrived there at noon. She placed her lollies in plastic containers then had soup and sticky bun for lunch.

Last Monday I took her up the 4 lane to discuss the matter of cataract operations having made an appointment to see him after she agreed with me to have the job done if she could be convinced that she would be completely anaeshetised during the procedure and her dyskinetics would not be a problem. He assured her that would be the case and stated that both eyes will be operated on at the same time. I resisted saying that one eye at a time may be safer because I have confidence in him and I didn't wish to alarm her. The next day she made similar comments, obviously having churned such matters over in her mind. This coming Tuesday I intend to take the paperwork for her day surgery on 18th September up to the private hospital. Her eye pressures were measured at 26.

For several months now my back suffers pains, especially after being in bed for hours. Several times I have been tempted to see the GP but convince myself the pain is lessening, so there is no need. I blame assisting her in and out of wheel chairs to bed, loo and car to be the cause.

Eventually I received a reply from Abbvie advising me that a cassette of Duodopa may contain up to 1.5ml of air and may cause the bubbles I reported by sending a photograph of a cassette containing bubbles.

Chapter 523 - Muddling Along

After hearing that way down south has record numbers of  'flu cases this season I have decided we will not go down that way for a while yet. I was contemplating visiting town W for a weekend but since it is south west of here best we avoid that as well. She has decided she does not wish to visit her very elderly aunt on the central coast either, partly because of the traffic on the way there and someone told her that the aunt would not remember her anyway, a comment that was best left unsaid.

Last week the shredding of the wool-like fibres of the pillows we bought recently was discontinued and she was trimming quilt wadding to size to make a quilt I suppose, although I suspect the wadding is normally cut to size once fabric squares are sewn together. I came upon her hacking at a "rectangular" piece of wadding about 0.5 x 1.0 metres. I offered to help her and trimmed it square. Returning shortly after I found her still hacking at the stuff so using a tape measure I "proved" to her that the piece was square. But no, she still had to cut in from one end, overlapping where she had cut to produce an overall trapezoid shape, suggesting to me that her vision is in some manner distorted.  Her attempt to sew around the edges of the wadding resulted in a broken needle in her sewing machine, which she is now unable to replace, then the machine became "broken" (I need to look at it). Left to herself in such a situation she disassembles any accessible parts on the machine. Recently she told me that the sewing machine "will not make stitches"; the top thread had not been threaded and once I did that stitching was perfect.The next day she began rolling the pieces of wadding, tying them with wool and packing them all into a large bin liner.

On the weekend she returned to decorating a pillow she had made, although the seams were only pinned together. And the decorations, from a kit of baubles bought at the Hot Air City craft show last year (I kept quiet about the show this year), are just being pinned on as well. I often find her trying to thread hand sewing needles, seems to spend ages trying without success so I thread them for her. On one occasion I took some images of her holding a small magnifying glass as an aid to threading a needle before I did the job for her.

Sunday, a miserable day, we went down to the shops. I suggested she buy a couple of small pillows to decorate but she seems to prefer her own odd shaped creations. Any coins I acquire from shopping are left for her to collect into plastic containers until there are sufficient (over $100) to warrant dropping them into a coin ATM for her own personal account. She spent Sunday afternoon sorting the coins into piles and attempting to determine their total value and even after scribbling on a note pad she failed to do so. Coins tended to fall on the floor quite frequently.

Quite frequently she drops needles and pins on the floor and uses the piece of dowel with a magnet glued to one end to pick them up. However, she is unable to see most of the needles and pins on the floor so just swigs the magnet end of the dowel in semi-circles hoping to locate them all

When dyskinesias begin in her legs I increase the Duodopa flow rate, usually by 0.5 ml/hr but late morning today I raised it from 6.5 to 7.5 resulting in a reasonable afternoon. Today being a cool sunny day I wheel chaired to the hall to check for the mail, hoping a brief outing in the sunshine is good for her.

Yesterday morning I found her stoma red and weeping. Noticeably better today. One of the Wild Dog carers thought her left eye was redder than usual; I hope she is not developing another allergy to glaucoma medications; but perhaps that may encourage her to have the cataract and glaucoma stent operation.