Chapter 602 - What is Becoming of Us?

  This morning I received an unexpected email from a distant cousin who I last emailed quite some time ago. I assume her circumstances encouraged her to reach out. I spent the last hour writing the following in return, included here because of my self indulgent laziness.

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I am very pleased to hear from you but of course not about [his] horrible, horrible dementia problems. I know a little about Lewy Body; years ago a neurologist had [her] scanned to see whether her problems were of that nature but the results were not conclusive. After doing a short on-line course from xxxxx, and being a member of the local Dementia Carers' Group I suspect Lewy Bodies may be the cause of many brain problems. You say you knew for some time that [he] had dementia; those close realise problems are developing before experts can place a label upon it. Back before COVID I was taking [her] to see a geriatrician yet he never detected that her cognitive abilities were declining; in her case inability to embroider, sew, knit and crochet, activities she did from when she was a little girl and became replaced by an obsessive need to pull fabric apart, undo loose threads, plan to begin a craft activity and make a mess of it without realising that something was going terribly wrong. And so on with other behaviours, although there is more than enough of her personality left for me to see the cruel joke to this part of our lives. And as various symptoms  develop and I ask (of nurses usually rather than neurologists) whether they are somehow involved with Parkinson's, I am told that such are typical of long term Parkinson's Disease. And [she] was diagnosed in 1991. Perhaps it was best that no one explained the long term consequences to us years ago.

You and [he] are fortunate that they have his medication under control, an ongoing task unfortunately and that he is in [a place] close to you. And having [your son] close as well will be a great comfort for you.

No we are not in lockdown, but may as well be. The carers who attend [her] twice each day always wear masks inside our place, and whenever we are out (usually only to doctors or chemists) we are masked, and being so stresses [her] with breathing problems. Last Tuesday we both had our second injections of Astra Zeneca. Usually each week there is a local scare when an infected person comes off the highway for fuel or food. I have our groceries delivered from Coles, unfortunately from [Hot Air City] and I don't look forward to a time should the [they] close the border to [our state].

You alluded to the great expense of residential care. I have asked our financial advisors (at some cost!) to prepare a plan for residential care paid for out of our superannuation funds that no longer seem large enough. Which reminds me, I must "invest/lose" a few $'s in Tatts tonight

I still dabble with family history although there seems to be less time available.

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Yesterday morning after she had her shower I fitted the FitBit to her right leg. I have not monitored her dyskinesia in this way in ages; just by observation. In particular, I thought she had negligible at night, based on how often I was woken by her feet causing the side panels of her bed rattling. Perhaps last night was not the best night to monitor with the FitBit because she had watched the Olympic Games Opening Ceremony, whether the complete event or not I don't know, since I went to sleep and about 0130 I woke and turned off the TV.   She was asleep when I did so. This morning she was sleeping and quite still at 0650. We both stayed in our night clothes today. She was happy to return to bed after showering and stayed there asleep until about 1230, except for a couple of times she wished to be repositioned. She is mute and uncomfortable and probably in pain. My arms hurt like hell. Both of us are suffering from transfers between wheel chair, commode, toilet bed. Deep heat has little effect for either of us.

I now have an appointment with a plastic surgeon for my nose job at Hot Air City in late September unless a cancellation occurs sooner or COVID causes borders to be closed.

She seems to have given up attempting to crochet and has begun knitting and the little she has done is a little more successful. On no day this week was she up to chatting with her volunteer friend up north.

Chapter 601 - Developing Matters

Had I mentioned that a piece from the tip of my nose was biopsied as being "nasty"? Months ago at the previous GP's surgery my nose was examined and I was given a small tube of ointment (a sample tube) to rub on my nose and the small bump would go away. The doctor is the skin expert at that surgery, even having a small microscopic instrument for examining such spots of interest. As there was no change in the spot I mentioned the matter on our first visit to a doctor at the Ring surgery. He also had a small instrument and having inspected my nose referred me to a visiting dermatologist at that surgery. In attempting to make an appointment to see the dermatologist I was told she was booked out for several months, Not long afterwards I was told I could see her last Sunday, but that was changed to the previous Thursday. She wanted to check me all over but when I explained my time was limited (the dermatologist was running more that 1/2 hour late and a Wild Dog carer was looking after she at home) she biopsied my nose only. A surgeon on the southern side of Big Smoke was recommended rather than one in Hot Air City. I received the referral for the job a few days ago. With Big Smoke becoming a COVID hot spot in the last two weeks, I thought it best to check with Wild Dog management about the repercussions of my attending there for day surgery. I was told I would need to quarantine and Wild Dog staff would not enter our house. I now await a reply to an email asking for a referral to Hot Air City which may or may not have border restrictions by the time the job can be done.

Meanwhile, back at the sheep station, we persevere. Both of us experience muscle pain in arms, shoulders and backs caused by transferring her between wheel chair - commode - bed - toilet. Transfers are reasonably easy when a Wild Dog carer is here and I can use a Pelican belt around her waist but that is not possible without a third person to raise and lower her clothing. Yesterday I bought a spray bottle of Magnesium Oil Spray, after learning of it watching a Zoom discussion about PD pain management of dystonia pain which she experiences in her feet. I may spray our arms as well rather than use one of the creams on the market. She frequently falls asleep in the wheel chair; so do I when sitting reading or watching TV; in her case I am not quite so concerned now that I learned that sleep episodes are typical with long term PD. I must seek comment about another recent development; she comments that she has breathing difficulties, usually as I put her to bed and I reposition her accordingly. I feel breathing difficulties may be a precursor to serious problems. Perhaps a bolus from her pump may be helpful, but I will ask a nurse at the state PD organisation.

She continues having a weekly Skype video call with the friendly volunteer up in Cane Toad country. Only one other person has spoken to her by phone in at least a month. I wonder whether people ask her trivial questions about family (she knows nothing because she is not told anything) to which she is unable to reply thus discouraging further queries and the "conversation" stalls. Yes I know speaking with her is difficult, words do not flow readily and her memories of the little that happens to her may be personal and embarrassing and not to be casually spoken about. Her only outings lately are medical in nature. Even if she was willing to go to our local cafe, walking there in the current weather would be intolerable. She needs to hear information from sources other than seen on a screen. She is unable to use her PC without forcing it into a tangle needing fixing. She never complains of being lonely ore bored.

Chapter 600 - I'm Not In The Mood To Write

 So why am I writing? Simply to remove my feelings of anxiety for not recording anything.

I have a piece of tape on my nose where a biopsy sample was removed a couple of days ago when I presented myself to a dermatologist at Ring surgery (where we go now); no hesitation, wanted to do a whole body check but there was no time for that because I needed to get home and relieve the carer. I was asked whether I wanted the work done down in Hot Air City or in a southern suburb of Big Smoke (supposedly a better surgeon there) so I chose the latter, not a good choice now that COVID is marching south. Maybe the biopsy will be negative. The dermatologist was not impressed when I told her the previous GP told me the "bump" was not a nasty and a small tube of cream he gave me would fix it.

She continues to have bouts of sleep most days for several hours. Today from 1100 to 1430 and had needed a cardigan and her grey blanket while sleeping with her feet up in her wheel chair. After a late soup lunch plus a Movicol (for today no motions yet) and Benefiber in OJ dyskinesia began so I placed her on the pedal machine.

I have noted that when her bowels are properly functional, her dyskinesia tends to be less and she feels the cold more and needs are cardigan while up and the grey blanket over her in bed.

Our Enduring Guardianship documents have been placed in the care of our solicitors. I sent an email to tell the woman who scared the hell out of me at the hospital that everything was in order, only to have an automated response advise mr that the woman no longer worked for the Health Department. Anyway, something now out of the way. I will take the certified copies of our Enduring Powers of Attorney for safe keeping, our Wills as well, although both sets of originals for both sets are at the solicitors in Hot Air City.

Our Financial Advisors sent documents to be completed before they begin to plan how best we finance Residential Care for one of us. I had thought this action was a matter of advance planning but my biopsy business may initiate action on this front sooner than I had hoped. I broached the subject with her today and found her disinterested in the matter, obviously not seeing the ramifications of our paying someone to advise us how to go about paying for Residential Care.

I must stop typing, the muscles in my right fore arm are killing me.