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.