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.