Chapter 588 - Me? Just Depressed if You Please

 Although I keep copious notes, I'm all at sea trying to rationalise her behaviour and symptoms. I can't figure out how changes I make in her Duodopa rates of flow impacts her well being; primarily in regards to her dyskinesia. For instance, yesterday I put her back to bed just as the Wild Dog carer arrived to shower her at 0930 (our new time for such); her dyskinesia was non-stop and she was verging on "zombie mode". To bed for less than half an hour, then wanted up because her legs were painful with cramp. She suffered continual dyskinesia for the rest of the day. I had attempted to give a bolus just before 0900 but the button was inoperative, as if it had already been pressed; I did not remember doing that, she didn't know, perhaps she bumped the button twice in quick succession to initiate the action? Was the pump defective? I waited until the lock out time would have expired by 1045, disconnected the hose fitting and pressed Bolus twice whereupon the pump displayed "Dose" ineffectively because, like in coitus interruptus, the connection was broken and it "spilled on the ground". So if Bolus is activated by chance bumping, how often does that occur?

Sleep interruptions at such times as 2400, 01200, 0400, usually not by her calling out but by the noise of her legs kicking against the sheet or bed end, wears the crap out of me, as well as my own mental anguish thinking about how to manage our lives for the better. I subscribed to Insight Timer and twice I have found breathing exercises that helped me sleep yet on the following day I was unable to re-locate them. Last night I found a 3 hour music and wave sounds track that faded me out shortly after 2000 after which she woke me at midnight and at 0500, yet I woke this morning very refreshed. Even though I think I saved the track as a favourite or something now I can't find it!! Woe is me tonight!

Anyway, this morning began as usual from about 0630 when she asked to get up to "empty her bladder", so polite. I made a small increase in the Duodopa flow rate to where it had been a week or two ago when 7.0 was accompanied by dyskinesia and a little lower rate seemed "better". At 0700 she asked to be placed on the pedals because her "insides were all twisted". I prepared her about 1 litre of water plus 4 hydralyte tablets (to compensate for her gross sweating) and a laxative (she is passing minimal pebbles again). By 0740 her dyskinesia was bad enough to prevent her holding the container to drink the water through a straw, so I held it for her. Some minutes later there were 3 turds in the pot, although of the compacted ball variety which I think indicate constipation. She then had her usual breakfast of diced fruit, two cheese covered crumpets and orange juice with Benefiber (she drank this later) while browsing one of her puzzle magazines. By 0910 she seemed to be going into "zombie mode" yet remained conscious and could respond to speech albeit slowly. When he carer from last night arrived at 0930 she quickly noticed her condition. Anyway she was showered and dressed without difficulty. At 1020 I took her outside in her wheel chair to examine our small flower beds. She poked and fiddled at various plants. She remained "dopey" as I took her into her sewing room where she has been sorting needles and pins ever since, although she told me when I asked that she was joining something together. She also found a small kit of cross stitch items (opened yet no work began) which she wishes to send to one of our grand daughters. I left to dispose of used Duodopa cartridges down in the sharps bin, getting fish and chips for lunch on the way home. Grilled fish and chips for her plus a milk shake, a vanilla slice each will be eaten this evening. She ate half the fish and only a few chips, drank all of the milk shake. 

I am very sad seeing her the way she is today, yet her current condition appears favourable compared to having pain and excessive exercise and sweating from dyskinesia. Tears are in my eyes whenever I see, or think about, the embroidered portrait I made of her from a 35mm slide taken in 1959. And I ask myself  "where has she gone?"

Chapter 587 - Some Bad, Some Good

Last Wednesday 10th February I increased the Duodopa Day Rate from 6.5 to 7.0 and since Thursday she has suffered minimal dyskinesia, to such a degree that unless she stresses due to transfers or an inability to perform a simple task there is no dyskinesia, although her head may bob a little. A flow rate of 7.0 has been used some time ago but at the moment I am too weary to look through my notes to see whether there was a similar improvement.

Her stoma remains a serious worry. From Tuesday 2nd February the doctor started her on Clindamycin which was continued until Tuesday 9th when it was discontinued by the doctor who said to restart it the stoma had not imp[roved by the Friday three days later. I thought it had so that antibiotic has not been given again. I took images of the stoma each day, leaving prints at the surgery on Friday for the doctor to see.

The Clindamycin was commenced on Tuesday 2nd and the following day she had to be returned to bed without showering and was in "zombie mode" until 1030. Hind sight suggests I should have called for an ambulance and/or spoken to her doctor since she may have been reacting to the new antibiotic. My cognitive abilities are in a bad way.

While typing the above she pushed the alarm button on her wheel chair, wanting the loo. While transferring her onto the loo a deposit was caught in her pull downs, which I ripped off. Then she did an enormous amount into the toilet. Wild dyskinesias made fitting a clean pair of pullups very difficult, and I did not replace her slacks so she is in the wheel chair without them. The dyskinesias have almost ceased.

For several weeks now I wake between 0300 and 0400, sometimes listening to Radio National, sometimes reading a few chapters, in an attempt to sleep. This morning I sat in the lounge recliner and listened to several sleep therapy exercises on Insight Timer, sleeping from about 0500 for an hour. Perhaps I need daytime exercise, since I discontinued treadmilling of a morning and she never wants to be walked in her wheel chair any more. So I did 30 minutes at 4km/hr this morning while watching a Great Courses lecture. I need to do something, I'm feeling jet-lagged without the travel required.

Chapter 586 - Which Extreme is the New Normal?

 I have no wish to be a masochist yet if I fail to document two days of horror then my procrastination will lead to stress. So I will try to describe two days in hell, that imaginary place designed to keep the followers in order.

Sunday 31 January. The day began at 0510 when severe dyskinesia caused me to roll her onto her back to still her legs. At 0615 she was awake without dyskinesia as I replaced the pump batteries and cassette then redressed the stoma which continued to discharge. By 0720 as I placed her on the commode, removing her incontinence pants, then onto the pedal machine she became out of sorts, stressed, not relaxed. Bad leg dyskinesia began and she asked to return to bed before the Wild Dog carer arrived to shower her. Bad dyskinesia continued in bed. At 0740 I gave her a bolus which may have been the wrong direction to go, more medication rather than less. Rotating her RHS, onto back, LHS had no effect. I told the carer as she arrived at 0750 there was nothing to do except to take our temperatures, a COVID requirement, which she did, then asked if there was anything else to do, to which I said "no, nothing" so she left. The better carers stay and "chat" which makes one feel not quite so alone. By 0800 I had turned her several times without effect. I turned off the pump at 0805 to counter the bolus then noticed she had ejected a large firm ball of poop which I pulled away with tissue held in a gloved hand, then wiped the area. The back onto RHS, the small black fan blowing on her face. I replaced the damp flannel on her face. Then she asked for her right arm to be pulled out behind her. The gel mat for cooling was placed beneath her head. Then she asked for her right arm to be out front, then rolled her onto her back, then onto LHS. Her continuous dyskinesia all the while caused sweat to run off her head and body, she was wet and slippery to touch. By now it was 0830.

As a change of routine , I raised the head end of the bed so she was in a sitting position. No good, she wanted the RHS. By 0845 I imagined the dyskinesia slowing a little. The dyskinesia worsened again so I restarted the pump at 2.0. I was rubbing her right leg because sometimes doing so eases the dyskinesia when she asked me to bend her left leg back and forth and things slowed a little. I had to rest at 0900 then began "rotating" her left leg as if it was pedalling slowly then the right leg, on the bottom, gradually reduced kicking until only the toes were wriggling. I stopped moving her left leg and dyskinesia did not return. By 0915 the right foot had stopped flexing, she was breathing deeply, asleep. Right foot wriggled occasionally. She woke at 0953 and as the dyskinesia began again I raised the flow rate to 6.0, what was the day rate. She wanted to be "untwisted".

In the past I had given her soluble Rapid Panadol to calm her, but I was unable to find any, so I crushed two ordinary Rapid Panodol tablets and gave them to her in water. She was laying on her back asleep by 1025 with only her right foot squirming.

1130 saw her awake so onto the commode where I sponged her rather than showered her. After dressing her in incontinence pants and a nighty I transferred her to the wheel chair. So at 1200 she began her breakfast and dyskinesia started and then she wanted the loo by 1205 so onto the commode. At 1215 she passed two enormous turds.

Dyskinesia continued through 1315, when with her feet up on the recliner she asked for something funny from the TV as I wiped discharge from her stoma. BritBox is fantastic, I selected "Keeping Up Appearances" for her. Mild dyskinesia continued as I wiped more discharge from the stoma at 1420 when she finished drinking four hydralyte tablets in cold water. She had the last of the antibiotics prescribed for the stoma infection.at 1645. Shortly afterwards I gave her two soluble rapid Panadol (I had found them).

About 1730 a sachet of pumpkin soup being heated in the microwave fell over, filling the bottom of the machine in soup. I heated another after cleaning the mess. That sachet plus the amount left in the first more than adequately filled a bowl. Grated cheese on top. Each time she attempted to fill a spoon with soup her hand shook so the wave motion in the bowl caused soup to dribble onto her mobile table. I had more mess to clean.

The Wild Dog carer sponged her down at a800 and we put her to bed onto her RHS and I rubbed her left leg for dyskinesia to cease and she slept. She woke at 1930 with dyskinesia, rolled her onto one side or the other, rubbing legs until around 2020 she settled on her RHS with no dyskinesia and returned to sleep. Well one of us did because I made no further notes.

Monday was an "average" day. Tuesday I was awake from 0300 and failed to return to sleep because I listened to a Big Ideas programme that described the environmental costs of modern communications technology.

Today, Wednesday 3rd February, she was asleep as I changed the settings and the cassette on her duodopa pump, replaced the dressing on her stoma and dressed the knuckle of the first toe on her left foot (one of the toes damaged some weeks ago) which has skin peeled off due to toe nails on her right foot, or rubbing on the sheets at night (sometimes she kicks her socks off during the night). It is so simple to do these jobs when she is asleep and without dyskinesia. She was difficult to wake to be able to transfer her onto the commode at 0720 even after I gave her a bolus. Once in the bathroom she mumbled she wished to return to bed where mild dyskinesia stopped by 0740. When the Wild Dog carer arrived by 0750 I was unable to wake her; patting her face, cold washer on her face elicited no response There was nothing for the carer to do, other than stay the allotted time and talk about the problem. I was confident she would wake about 0900. She didn't. On her small wrist device her BP was 151/93 and a pulse of 64. I gave her a bolus without effect. By 0930 she reacted slightly to a cold washer on her face by wrinkling her forehead. At times her legs moved slightly. By 0945 her chin began to tremble slightly. I made a plan to press the emergency call button if she was not awake by 1000. She wasn't and I didn't, remembering that hospital doctor two Xmas mornings ago telling me "to wait a little longer next time." So I did. I raised the head end of the bed until she was in a sitting position. Her eyes popped open. I folded her fingers around my index finger, asking her to squeeze. She did, ever so slightly. By 1025 her eyes followed me as I moved. She said "cold" at 1030. She indicated she wanted the wheel chair instead of the commode. By 1100 she was talking, telling me that if she rubbed her knee caps her head tingled. She said her left temple was tender to touch!?!

And so the day continued into what was a "normal" afternoon for us. I could write more but a glass of merlot is suggesting there are better things to do, such as take her to bed and make her comfortable.

I wonder which of the two was the better day? I would prefer to experience neither again if I had a say in the matter.