Chapter 519 - Loneliness

I frequently suspect she is lonely. The only women she has regular contact with are those from Wild Dog Care and that only briefly. I notice they, well some at least, tend to hold some conversation with her when I am not present so I try to busy myself elsewhere. She needs encouragement to use her mobile. She mostly talks on a phone in monosyllables, and those in response to questions from the other end. Her voice seems to be softer and less modulated lately but then my hearing has deteriorated. Her friend at the local equivalent of Dance for PD held at a church hall seems to look forward to seeing her each Tuesday morning, but there is little communication between them for the friend has PD as well and is stricken with loss speech, only speaking in whispers, but stands and walks with difficulty using a walker. Which is the greater loss, ability to speak or walk?

On Friday we met her sisters at the usual place up the 4 lane; the place we were to meet on the previous Friday when she suffered her most recent "turn" and I called for an ambulance. Ever since we began meeting there years ago the seating arrangements since she became wheel chair bound mean she is unable to be positioned beside either sister so she has minimal input to conversation and when she does comment the sisters never hear her, unintentionally of course due to her softer voice not rising above the background noise of the restaurant. The sisters' voices have a greater sharpness and they speak at a faster rate. I hear her make an odd comment or two, yet no one else does. Should I interpose?

Yesterday her MS friend rang to to tell us that a work related friend, whose wife was part of the unofficial wives group when we were all "strangers and foreigners" at that country town in WA, is in palliative care suffering the end stages of pancreatic cancer. Although at first she was in a sleepy stupor, I absented myself after setting the phone to speaker mode and the somewhat one-sided conversation lasted for at least 20 minutes. The experience was good for her.

Even I have difficulty speaking with family and family friends. I have never been much of a conversationalist but now in our declining disabling years isolated in a country town, that relocating to seemed a good idea 19 years ago, we know so little about our grand children and other family members that we are unable to trade stories about their exploits, or bother much listening to tales from others (I speak for myself alone). And what else does one talk about at family gatherings? Latest holidays? Well we don't have those either. On Friday my positive comments on the ousting of a politician at the recent elections, one well known for his right wing stance on global warming, abortion, feminism and much else, received aggressive responses in return, albeit from those of a religious persuasion of a different colour. So being a coward (not wishing to argue) I discontinued conversation about religion and politics and the future of humankind, leaving little else to discuss.

For many weeks I have distressed myself searching for an original monotone photograph of herself and middle sister, aged about 4 and 3 years respectively, seated on a circular table top. A beautiful image of two pretty little girls. The sister had asked for a copy of it. I had thought to digitise and stitch it. The stress of searching in albums, boxes, cupboards, even in collections of scanned files, for many weeks had become a cause of depression until yesterday when I unexpectedly saw a small copy of the image a a small album of random photos. What a relief!! At least now the image, even if not from the original 8x10, can be recovered with some loss of quality.

In the process of searching for the photograph I bagged a lot of junk paperwork for the garbage and my hoarding complex was only a little harmed. Actually a few "treasures" that were lost are now found. And 8 or 9 black bin liners have been filled with clothes not worn in years to be collected by St Vinnie's tomorrow. Perhaps this is downsizing in preparation for the inevitable which can't be too far away as both of us will in a short time will merge into our 9th decade. For my part there is too much family history work to complete, a few or more stitchings to do for simple pleasure and a lot of books to read.

Chapter 518 - Another Scare

Last Monday a call from the doctor's surgery had us visit there about 1400 to hear the report about her thyroid scan which showed some nodules seemingly of little interest to doctor J. After we returned home she was hot, cardigan off, feet up, fans on, chilled water and by 1600 too cold then asleep in the wheel chair 30 minutes later.

Early Tuesday morning she fiddled, for no known reason, with her bedside clock and the alarm sounded at 0600, so even though I was waking listening to the news on an ear bud, I jumped out of bed searching for the source of the beeping.

On Wednesday, my respite day, she had the carer woman take her outside (beautiful weather) where she weeded the terracotta pots. I must tell them she is not to get her hands in the dirt; she finds doing so a pleasure. That evening in bed she was breathing heavily and noisily, was very dyskinetic and sweaty so I gave her a Kalma pill to quieten her at 2110. At 2150 her right foot needed rubbing to ease a cramp and I noticed that her right leg and foot were hotter than the left.

She was breathing noisily and was hard to wake on Thursday morning as I cleaned the stoma and re-taped the pump tubing and returned to sleep so I administered her Optifresh and Ganfort eye drops an hour later at 0730. Since our postal voting papers had not arrived, we went to the pre-polling place mid afternoon.

In the early hours of Friday morning she kept waking me with loud snorting, loud breathing and yelling out. At 0615 I carried out the usual pump changes but left the eye drops for later. Her breathing and snorting were still loud so I rolled her onto her right side and she was much quieter. She muttered that she needed to piddle before saying "I'm doing it" and falling asleep again. From 0730 I tried to wake her by shaking her and patting her face and at 0740 her eyes suddenly opened. I swivelled her to sit on the side of the bed but was unable to lift her into the Sara so I gave her a bolus dose. The Wild Dog carer arrived and between us we were able to transfer her to the commode then since she was "wet" under the shower. We dried her, new incontinence pants and a clean nightie before returning her to bed at 0808. She was not lucid, eyes open but unable to answer questions so I pressed the emergency button at 0815. The ambulance arrived about 0830, she was checked over and their tests only indicated that her body temperature was 34C and she was "cool to the touch". I signed a screen to say I didn't wish her to be taken to the hospital. She remained in bed, At 0930 she drank her breakfast fruit juice with Benefiber then asked for chocolate. By 1020 I dressed her and she was seated in the wheel chair accepting a chai latte and a piece of buttered sticky bun. I rang the doctor's surgery and then took her there but there was no useful advise given so home again by 1230 where she did some leg exercise on the pedals. I attempted to ring her neuro at West Beer but the number was always busy so I sent an email to the consultant nurse before ringing her to ask her to pass the message on to Dr F. The nurse suggested increasing the Duodopa night flow rate to 2.5 mL/hr, which I did from then on. That afternoon she was trimming and fiddling with clothes she had attempted to modify weeks ago without success. Dyskinesias were minimal all day. I was asleep about 2230 when she began calling out after adjusting her bed positions and tossing pillows about and attempting to remove a quilt because she was too hot and her dyskinesias were bad.

Saturday saw us walking up and down the main street on a sunny morning after I learned that a cousin who had intended to meet us at the Bakery for coffee was running hours late. She attempted a chicken and avacado salad lunch at the Club but ate very little of due to swallowing difficulties. Then home to more snipping of clothes being modified. Minimal dyskinesia. By the way, the FitBit has not been around her right ankle for weeks now because it causes her discomfort and medical professionals take little notice of the results.

Today just quietly snipping and trimming the clothes being modified. I don't object to her doing this; she is kept occupied and interested for hours and if new clothes are needed on our shopping trips down the street each weekend then such is the cost of our Progression.

Chapter 517 - Times are Tougher

On Friday 26th April I cancelled the appointment she had to return to the physio at the gym at the Hub place. At the first appointment he listened to me talk for almost an hour, asked few questions, commented that her left ankle was really frozen, did not suggest any exercise although I should have asked. These people are fitness marketers or sports injury healers. I keep intending to have her complete a few exercises each day but I lack enthusiasm to force her to do much, even though I'm sure her right foot is turning inwards more and more. A couple of days ago I tried to have her stand in the fore arm walker, realising I should have persevered with having her stand after she fell backwards out of it several years ago. Now my aim is to have her use the pedal machine without powered assistance.

I am making too many mistakes with her care. Early on the Sunday morning 28th April she woke me kicking the rails on the side of her bed; she lay across it. At 0615 at the time to change the pump settings I found that I had left it running at 5.5 mL/hr overnight, instead of at 2.0. Same error was discovered at 0315 Sunday 5th May when again dyskinesia kicking of the bed rails woke me. But worse happened yesterday, Saturday 11th May, when I discovered at 0625 that I had failed to replace the cassette on the pump the previous evening. The cassette had emptied about 0400, as I calculated from the flow rates. She was a little sleepy so at 0645 I gave her a bolus dose before going through our usual routine at 0730 of transporting her to the commode then to the pedal machine. She had been pedalling when the Wild Dog carer arrived at 0750 and commented that she seemed asleep on the commode. Shaking her to wake up, she stared vacantly ahead, not responding to questions. Her mouth was full of phlegm which she normally wipes away with tissues but I needed to clear her mouth for her. I gave her some small sips of water which she swallowed readily. The carer helped me return her to bed without contemplating a shower and left at 0820. I tried to keep her awake by asking questions. At 0845 she began to cough and I wiped more phlegm from her mouth. At 0900 she accepted more sips of water and asked to get up at 0905. After some having some breakfast I showered her at 1015. The rest of the day was only abnormal from the fact that her legs exhibited no dyskinesia. Today we went shopping on Mothers' Day, all morning.

Earlier this past week I have had greater difficulty transporting her on and off the toilet and at bedtime the Wild Dog carers have certainly needed my help. Since the stiffness and lack of mobility suggested lack of medication, on the morning of Friday 10th of May I raised the daytime flow rate from 5.5 to 6.0 and during that day she was able to stand much more readily. Yesterday's problem masked any improvement but so far today she has been good and mostly without dyskinesia.

Some time ago I punched a hole in the fabric of the Duodopa pump bags so that I can write "D" or "N" (Day or Night) on the cassette labels to check whether I have replaced the cassette at appropriate times but this is only effective if I trouble to check. So now each night before turning the lights out I will write in my note book that I have checked cassette replacement as well as the flow rate.