Chapter 605 - Where in This Greyness Do We Find Relief?

 

This afternoon I am dictating to Microsoft 365 because my right arm has too much pain in it to be able to type even at my slow speed. The pain has developed over the last few weeks manoeuvring her in bed and also transferring her between wheelchair, commode, toilet and the Sara device. So I remembered trying to train a rather expensive, at the time, dictation software package of years ago. I discovered this Microsoft 365 package built in voice-text software that hardly needs any training except it is rather woefully slow. Also I wouldn't mind betting that has something to do with accents on this side of the Pacific Ocean. So if there are more than the usual number of typos blame it on the software.

The above was written weeks ago. This is not the time to become a proficient dictator (no I don’t mean as in “Sieg Heil!”) so I have returned to typing. My arms remain painful when typing, or when lifting my tea mug, or when steering the car. The doctor prescribed Osteo Relief, meaning I get the stuff more cheaply but doesn’t appear to help much. I apply various creams from time to time. Even wrap bandaging around the fore arms. Due to twisting my body while transferring her on the Sara Stedy my right hip was so painful that I almost fell several times while showering; that has been resolved by only transferring her on the Sara Stedy while Wild Dog Carers are present, when they manipulate the seating paddles as I hold her up by the Pelican belt wrapped around her waist and since they had only been here morning and evening I asked them to make another visit, a “Dunny Run” around 1300 each day when I take her to the loo with their help. If an “emergency” occurs (not yet) I will just have to transfer her on my lonesome but of course the pull-ups and pads make doing so unnecessary. Our Level 4 care budget is running low so I decided to cancel my 3 hour respite on Friday afternoons and use the time for the Dunny Runs. Anyway, what can I do on Friday afternoons these days? On the last respite I had, I bought nachos and coffee from K&G’z take away, then sat outside our village hall enjoying the delayed lunch. During the COVID lockdown I have only been to doctors and chemists. I just wrote too soon; she belled me to go to the loo for a piddle, so back to transferring her by the sara stedy; onto it she was able to flip the paddles into place when I demanded she do so, but unable to assist with that task when lowering her onto the loo seat or when lifting her off it and not even when lowering her back onto the wheel chair. My arms ache, although partially due to this typing. In future I will give her most of her fluid intake at lunch time rather than at breakfast, that may help.

Some say “Put her into care!”, some say just the opposite, and some say “You shouldn’t be living where you are”. Bullshit to all your comments and platitudes!!!!

I had arranged for her to go into respite for two weeks prior to admission into hospital to have her PEG tube replaced from the Duodopa pump to her intestine replaced (more on that later). She had no wish to be in respite, she didn’t really agree, instead simply remained non-committal. Yet at the conclusion of making the arrangements by phone I was told “ Oh by the way, you will be unable to visit her because the facility is in lock down because 3 residents are in isolation.” The cause for isolation was not mentioned and I did not ask. After hanging up I pondered on this, decided against respite plans proceeding, spoke to her, she strongly stated she wished not to go so I emailed our decision not to proceed with respite. Then followed some emails back and forth, with an offer of special exemptions for me to be able to visit her. I declined the offer. After that I devised the Dunny Run.

Now the hospital admission. After a number of doctors had prescribed antibiotic courses, 9 in all (!!) to resolve the scoriated skin and weeping granulation of her stoma, a conversation with an allied health professional at West Beer suggested I approach our GP with the details of the tubing for a referral to a Gastroenterologist down in Hot Air City, someone skilled at doing the jog for their clients down there. I typed the details given over the phone, emailed them back for verification and was then asked to add that the tubing was old, having been in use since 2015. The suggestion being that the surface of the plastic degrades to cause irritation to the stoma wound. Since her stoma problem has been known since January of this year I can only wonder why the replacement idea has taken so long to be suggested. Anyway the GP simply attached my typed to details to her referral request and the receptionist Faxed it to Hot Air City. In due course a phone call asked me to be available to have a phone consultation in a week’s time. Appropriate paper work was completed on line. The specialist rang in due course and the 15^th September was decided to be her admission date. He even suggested I stay at a hostel associated with the hospital. Hospital admission paperwork was mailed to me and I mailed it back a few days ago. Yesterday I began researching entry exemptions into Hot Air City as well as to return back home. First I rang to make a booking at the hostel associated with the hospital to be told the hostel was not open for the duration and I will need to stay at a nearby motel. Doing so will require I drive our car down, which I had not intended doing, rather intending to be a passenger with Wild Dog Care transporting her and her wheel chair to the hospital. Then I researched how to obtain exemptions to enter Hot Air City then to return to our fair state. Mind boggling. Hot Air City is a police state, our state appears much less strict suggesting why we are experiencing such a high number of COVID cases. The exemptions can be sought closer to the time; circumstances are sure to change for the worse. Tomorrow I will seek clarification from Wild Dog whether they or a subcontractor are able to transport her to and from the hospital without my presence. The hospital told me except in exceptional circumstances will I be allowed into the hospital.

I discovered that the doctor’s surgery we had attended did not record her flu injection last March although they did mine according to Medicare records. Because they failed to record the event, then in their eyes it never happened. I asked the GP at the surgery we now attend for a flu injection for her, the GP did not think that was necessary; I insisted, she relented, so now Medicare has a record of the event. She continues to mention pain in the left hand side of her abdomen even though her bowels are now quite regular without constipation so a referral was written for a CT scan. The hospital admission paperwork asks for an Advanced Care Directive, so I asked the GP for our documents to be witnessed and signed by herself, a doctor. I had not bothered to complete them when we had our Enduring Guardianship papers completed a short time ago. Speaking through COVID masks to a lady with an accent and my hearing aid ineffective led to a heated conversation during our GP visit. She seemed to thing I was asking too much in the time allotted for the two adjacent appointments I had made. Next day when I returned to collect my smaller phone dropped somewhere in the surgery I left a note of apology to her.

Two weeks ago I had the carcinoma on my nose excised; not enough was removed. I need to return in a few weeks to have the job completed.

I am far too old to tolerate all these stresses.

Many weeks ago I was in a Zoom meeting for PD carers. During the introductions by attendees one was found to be recently diagnosed himself; he really should not have been present, he wanted to learn what was in store for himself, suggesting he had much to learn about the quirks of this sad disease. I spoke to him but can’t remember what I said, other than that I had had no idea what was in store for her, and for me, when she was diagnosed 30 years ago. We have missed out on most of the summer time of our lives and now as autumn closes winter is unpleasant in the extreme.

 

Chapter 604 - Anxiety and Stress

 A Zoom meeting with a financial advisor planned for last Wednesday made me a shattered wreck because I procrastinated telling her that the aim of the meeting was to plan one of us entering Residential Care. A few hours prior to the meeting I summed up the courage to tell her, she made a non-committal reply. She did not react. I set up for meeting on her machine rather than mine in my dungeon. We were ready on time, the advisor wasn't, more tension, I thought she would become restless but she didn't. She just sat in her wheel chair passively waiting and I don't think she spoke during the 45 minutes of discussion and made no comments afterwards. I had expected her to be quite negative but instead was just mute and did not speak about it afterwards. I learned our SMSF was not set up for the funds to be readily used as a Refundable Accommodation Deposit. Years ago we must not have been contemplating institutional care. The advisor is now how to get around the difficulty and I have supplied additional information about our lifestyle budgeting. And then CLink has queried my carer status as if they thought I was no longer going to be her carer. Kafka like coercion.The advisor wants an idea of my living costs if/when I am on my own. We spend more money than I realised on on-line subscriptions, books and music. Small amounts add up to quite a lot of money.

I'm trying to break our going to bed early habit. Saturday night in bed from 1900, awake from 0000 to 0300 stressing, listening to Insight Timer, Radio National and reading a novel trying not to think about the tasks to be done. I decided everything had to be done on Sunday. This one above, responding to CLink by the requested Due Date, contact West Beer again about Duodopa pump error messages and the ongoing stoma problems (see below). I began with a load of washing and put a previous week's washing away. Make an appointment for a medical check-up for my driving licence renewal and several other things obviously of no importance now that they are actioned.

For most of her time last week she pulled threads out of a pink hand towel which now looks as if it has the pox or mange. There seems be no purpose to this endless task, although I suspect the task may reduce the amount of dyskinesia. Our small hand held vacuum is very handy for picking up the loose threads tracked all over the house, She had been knitting thin yarn on very large needles, the effect being  quite pretty but something went astray, she incorporated a third needle, the whole thing became a tangle and yesterday she asked me to throw it in the bin.

This morning as I cleaned her stoma area prior to the Wild Dog carer arriving to shower her, a trickle of blood dribbled down her tummy. I feared it would not stop. Several wads of tissue dipped in cold water eventually brought the flow under control just as the carer arrived. I feared the bleeding may begin again during her shower but it did not. I almost panicked, not knowing what to do, who to call. Mid morning I rang West Beer to speak to the clinic nurse who was unperturbed by my description of the bleeding. She decided that the intestinal tubing needed replacing, having been fitted in April 2015, and deterioration occurs to cause stoma issues like we are seeing. I wonder whether this is a recent discovery because our problem began at the beginning of the year, causing me no end of anxiety and pointless visits to doctors and useless antibiotic treatment. She told me that there is a knowledgeable gastroenterologist down in Hot Air City who is able to do the job, since Big Smoke is in COVID lock down. (tell me, why "lock down" rather than "lock up"?) She gave me the words to ask our local GP to write a referral to the gastro man. I emailed the words back to her for verification. Supposedly day surgery, although I'm sure only after an initial consultation, so two day trips at least and at a private hospital so I had better cancel ideas of cancelling our private health insurance. So another GP appointment for tomorrow for the referral.

I completed the Census on line a short time ago. All this typing exercise may have been beneficial for my right arm which has been freezing in pain as soon as it hovers over a keyboard. Too much pulling, lifting and shoving in my carer roll.

Chapter 603 - The First Time Ever I saw Your Face

 It was just where Park St becomes William Street, on the corner across from the Museum, I saw her in a tight tartan patterned skirt and a olive green twin set, black high heels, on a sunny morning in late August 1959. Although that chance brief meeting in passing must not have been our first encounter, for I knew who she was, but it is my first memory of her. I later learned she was on her way to a typing class; I was on my way downtown to a PMG workshop to have a hole drilled down the shaft of a rotary switch. Did we say Hi! or something similar that teenagers may have said in greeting in those days? She was 16, I 18 years old.

Yesterday, as I was fitting her feet into the slippers glued onto the pedals of the pedal machine, I looked up into her face and simultaneously saw on the wall, out of the corner of my eye, my embroidery of a photo of her taken when she was a few months older, at 17. In front of me a face with watery grey eyes surrounded by red rimmed lids a little larger than the eyes, beneath which was deflated puffiness, an upper lip partially withdrawn into her mouth. Very little suggestion of eyelashes but her little button nose remains unchanged, except for a small bump of a mole on the ridge. Two cheeks, both flushed without rouge and lined. Her hair, once the bane of her youth, retains much of its colour and is wavier that she ever imagined it could be. On her chin some sparse white stubble which needs the attention of the epilator I bought her last summer. And tears came to my eyes, as now, as I write these words. I hid them by looking away.

Yesterday was a very bad day. I woke several times in the early hours hearing her dyskinetic legs  rattle her bed and rustling the bed clothes. At 0630 I changed the pump rate from 3.4 to 7.4 mml/hour (increased slightly a few days ago hoping to minimise the dyskinesia) and a brief burst of dyskinesia as I disturbed her. At 0730 I slid her onto the commode, into which a small drop of poop, then onto the pedals, a sachet of Movicol (most unnecessary although I didn't know that), a small pile of "cat turds" in the pot. She was unable to finish drinking the 700ml of water with 2 hydralyte  tablets so I took her over to where she eats meals near the TV, leaving her seated on the commode (I usually transfer her onto the wheel chair). Shortly before 0930 I readied her for the Wild Dog carer by removing her stoma dressing and placing toe guards on her feet. The commode pot had quite a lot of sloppy poop in it when the carer arrived; we waited for the flow to stop, and when it seemed to, her shower began and the poop continued and with some encouragement flowed down the shower drain. At 1000 I decided it best she remain on the commode, dressed only in a nighty. I sprayed her mouth with Fess as she began to have some saliva problems. I replaced the Duodopa cassette. Then Exelon 10 patch onto her right shoulder. She asked for her logs to be raised, lowered, untwisted before asking to lay down. So at 1010 I rolled her onto her right hand side on her bed protected by some green and blue protectives over the slider sheet on the bed (she had no pants on). By 1025 she asked for her right side to be "out", then onto her back, then onto her left hand side, then her left hand side "out", so onto her back, seemed satisfied then dozed. At 1130 she asked to get up so I badly fitted wrap around pants (I find them difficult) and in sliding her onto the wheel chair I jammed her left leg against the wheel chair, breaking the skin. She remained in her nighty and I wheeled her to the back room where at 1200 I dressed her stoma and bandaged her left leg. At 1230 she had a banana and peanut butter smoothie and two chocolate rolls and some grapes. She woke from a short sleep at 1340 wanting to lay down so I returned her to bed onto her RHS and went straight to sleep without even waking when an Asian female voice rang to ask about Government allowances for solar panels. As I was setting up an Alexa monitor to keep an eye on her remotely she woke saying "Hot" so I removed the bedclothes and turned on her small black fan. I noticed she had bad dyskinesia at 1540 so I rolled her onto her LHS and rubbed her legs for 15 minutes until the dyskinesia stopped and she slept.

She woke at 1700 so onto the wheel chair. The Wild Dog carer changed her into clean pull-ups and nighty then we put her back to bed. She had wanted a fish meal from the couple of choices I gave her but once laying down she wanted nothing and went to sleep. I found her awake with dyskinesia at 1930 when I woke in the back room. She did not wish to eat. Neither did I. I rolled her onto her RHS and turned the fans off and changed the flow rate to 3.4. As I write Barbara Streisand sings "The Way We Were" on Alexa. At 1945 vigorous dyskinesia would not stop, rolled her onto LHS, lightly rubbed her legs to stop the dyskinesia which began again at 2000, rolled her onto her back, some minutes later she asked to be on her RHS, then back and forth until 2030 when I gave her two Rapid Soluble Panadol. At 2040 still rolling her, rubbing legs until gradually she became quiet, then it all began again until at 2100 all is still then her eyes begin to open, dyskinesia begins and she asks to be moved up the bed. She wanted to be uncovered, then covered, then at 2115 she said in a loud voice "I want to face the wall" so I rotated her onto her RHS, a little shaking stopped. I left the room, decided I needed to eat so I had a tin of Heinz chillied beans. She was quite still and sleeping at 2220 but 15 minutes later her head and legs suddenly began to shake, her eyes opened. I rubbed her legs. Things slowed. At 2245 as I turned the light off there was a slight movement of her feet. What happened during the night I have no idea; I awoke at 0500 to find her only covered in a sheet; quilt and blanket were on the floor; she was cold.

I thought today was to be a repetition of yesterday as she left a small cow pat in the commode pot and dribbled poop in the shower again, but apart from a rumbling stomach, she is much better.

Yes today may be better, yet I wonder how many bad ones we can cope with and what will be the outcome.

She continues to knit on #10 needles very fine wool without finishing too many rows. This is much more productive than pulling thread from a bath mat that kept her occupied for many days.

Another song, by the Seekers, "The Carnival is Over". Roberta Flack sings the title piece to this chapter, and Flack is one of her ancestral names.