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.