Chapter 458 - My Mistakes
Last Tuesday I failed to replace the Duodopa cassette late in the afternoon, even though I had continued to record other actions such as application of eye drops and even changing the Duodopa flow rate and flushing the outer port at 2100. She woke me several times in early morning shouting and noises as if she was having a bad dream. I woke as usual at 0600 on Tuesday morning; she was making gurgling and gasping noises. As I replaced the cassette as usual at this time I saw that the cassette was completely empty!! Then I saw that I had not written in the note book that the cassette had been changed. She remained asleep while I replaced the cassette, started the pump at the day rate and began the Morning Dose of 8.0 ml and when that completed I initiated a bolus dose of 2 ml. Her legs became dyskinetic as usual as she woke at 0640. During the day she began sorting the contents of the dresser drawers. A bolus at 1300 and attempted another after 1500 but the action was locked out, she must have leaned on the button sometime earlier. At 1720 she called for an urgent trip to the loo, but I was too late and she had messed her pants. The Wild Dog carer had her into bed shortly after 2000 when she decided she wished to knit on some new large needles that came with a recently bought craft magazine, soon stopped when matters went the stitches went wrong and large leg dyskinetics began. I gave her a bolus which may have been inappropriate when she became excited and restless. At 2215 I changed the pump setting to the night time flow rate of 2.2 ml/hr as she began to fall asleep attempting to knit on smaller needles.
About 2 hours later, Wednesday 0020, she woke me, very dyskinetic, very hot needing the fan on, she was diagonally across the bed, legs in outside rails, one hand grasping the rails on the other side, the other hand grasping the over head bar, fingers clawed, breathing quickly, she was rational but staring. Remembering my mistake of the night before, I checked the cassette was almost full, the flow rate was 2.2 and there was about 1 minute between pump cycles. At 1235 I stopped the pump to see whether the dyskinesias abated. Some 5 minutes later the dyskinesias stopped, she continued panting quickly and shallow. I set up the small personal fan for her. She said her feet felt funny "inside", she became calmer but was not blinking. At 1250 she asked for an eye shade to help keep her eyes closed.
Then she commented that she felt cold with the eye shade on, asked whether the personal fan was on high, so it was on the low setting. So at 1256 I turned the personal fan off, she still breathed quickly, she felt tired, commented "I'm a bit on the warm side but better than being cold". I decided against experimenting to determine whether she really felt colder with the eye shade on. At 0100, with eye shade on and the personal fan off she began breathing more deeply and longer.By 0110 she was snorting and snoring a little as she slept. I restarted the pump at 2.2 ml/hr.
At 0133 she woke, spoke, "feels warm, doesn't want fan on". At 0145 she said she felt better. no dyskinesia. At 0425 she breathed regularly, making occasional noises.
I woke late at 0650, Ganfort eye drops, replaced the cassette, flow rate changed from 2.2 to 5.4 ml/hr, Morning Dose 8.0ml and Viscogel eye drops. At about 0730 I took her to the loo then onto the commode to do some pedal exercises until the Wild dog carer arrived. After showering she was seeing double, was dopey and confused, unstable, had difficulty holding onto the sara transport so we returned her to bed at 0820 and the pump restarted at 5.4 ml/hr. She was not hot or clammy yet looked very pale. She wanted to drink. She told the carer there was a pain in her left arm. I didn't think to take either BP or temperature. Then she slept , breathing softly, until 0935 when she said she felt dippy and wanted an ice cream. By 1000 she wanted to get up, her right hand "asleep". Breakfast of fruit juice with Movicol, yogurt and fruit in jelly, experienced some stomach pains. I found her attempting to disassemble a tea tin while sorting the cupboard above the stove at 1130 and by 1140 she had taken herself to the loo; too late, she had pooped in her pants by the time she called me. She did more loose stools into the loo. After cleaning her by 1200 I returned her to the wheel chair, leaving her in front of the TV. When I returned at 1230 from my dungeon I discovered she had let herself out the back door and was "digging" the soil in the raised garden bed removing mint runners. She protested when I washed her hands and arms with the hose and wheeled her back inside. Surprisingly, the remainder of the day and evening was quite normal, for us.
On Thursday I, at long last, summed up the courage to ring our state PD organisation help line. I had postponed doing so but now thought I had a valid question to ask rather than just waffling about our situation. Her incessant sorting of cupboards, drawers, boxes, you name it, suggested to me that there may be "games" appropriate to persons who indulge in punding; ie dementia patients. I had searched on line, finding items that seemed too "childlike" since I had no desire to offend or upset her by suggesting she do such activities. The person who answered the help line knew all about punding so I had no need to go into details to any extent, I was asked the usual type of questions and some documentation of locally available "objects to be sorted" will be sent to me.
For several days we have been trying to find the power pack for her portable DVD player. I suspect she has "sorted" it into a box somewhere. She thinks she last used it when she was in hospital for the colonoscopy back last March, so it may have been left behind there. I will try to buy a replacement. Yesterday while searching for the power pack she found a deflated exercise ball in our shoe box; she was determined to inflate it, I refused to bother with it, really not the response for me to make. I am trying to interest her in machine embroidery again, but physical matters make it difficult, eyesight and lighting, seated in a wheel chair, dyskinesia of her legs beneath a sewing table. At the moment she is fastidiously cleaning the stove top, where she found some grime. Yesterday I ordered an internet radio for her to play in the dark hours when she sometimes lays awake for hours, for I think with preset station selection she will find it easier to operate than a range of fiddly MP3 players I have.
About 2 hours later, Wednesday 0020, she woke me, very dyskinetic, very hot needing the fan on, she was diagonally across the bed, legs in outside rails, one hand grasping the rails on the other side, the other hand grasping the over head bar, fingers clawed, breathing quickly, she was rational but staring. Remembering my mistake of the night before, I checked the cassette was almost full, the flow rate was 2.2 and there was about 1 minute between pump cycles. At 1235 I stopped the pump to see whether the dyskinesias abated. Some 5 minutes later the dyskinesias stopped, she continued panting quickly and shallow. I set up the small personal fan for her. She said her feet felt funny "inside", she became calmer but was not blinking. At 1250 she asked for an eye shade to help keep her eyes closed.
Then she commented that she felt cold with the eye shade on, asked whether the personal fan was on high, so it was on the low setting. So at 1256 I turned the personal fan off, she still breathed quickly, she felt tired, commented "I'm a bit on the warm side but better than being cold". I decided against experimenting to determine whether she really felt colder with the eye shade on. At 0100, with eye shade on and the personal fan off she began breathing more deeply and longer.By 0110 she was snorting and snoring a little as she slept. I restarted the pump at 2.2 ml/hr.
At 0133 she woke, spoke, "feels warm, doesn't want fan on". At 0145 she said she felt better. no dyskinesia. At 0425 she breathed regularly, making occasional noises.
I woke late at 0650, Ganfort eye drops, replaced the cassette, flow rate changed from 2.2 to 5.4 ml/hr, Morning Dose 8.0ml and Viscogel eye drops. At about 0730 I took her to the loo then onto the commode to do some pedal exercises until the Wild dog carer arrived. After showering she was seeing double, was dopey and confused, unstable, had difficulty holding onto the sara transport so we returned her to bed at 0820 and the pump restarted at 5.4 ml/hr. She was not hot or clammy yet looked very pale. She wanted to drink. She told the carer there was a pain in her left arm. I didn't think to take either BP or temperature. Then she slept , breathing softly, until 0935 when she said she felt dippy and wanted an ice cream. By 1000 she wanted to get up, her right hand "asleep". Breakfast of fruit juice with Movicol, yogurt and fruit in jelly, experienced some stomach pains. I found her attempting to disassemble a tea tin while sorting the cupboard above the stove at 1130 and by 1140 she had taken herself to the loo; too late, she had pooped in her pants by the time she called me. She did more loose stools into the loo. After cleaning her by 1200 I returned her to the wheel chair, leaving her in front of the TV. When I returned at 1230 from my dungeon I discovered she had let herself out the back door and was "digging" the soil in the raised garden bed removing mint runners. She protested when I washed her hands and arms with the hose and wheeled her back inside. Surprisingly, the remainder of the day and evening was quite normal, for us.
On Thursday I, at long last, summed up the courage to ring our state PD organisation help line. I had postponed doing so but now thought I had a valid question to ask rather than just waffling about our situation. Her incessant sorting of cupboards, drawers, boxes, you name it, suggested to me that there may be "games" appropriate to persons who indulge in punding; ie dementia patients. I had searched on line, finding items that seemed too "childlike" since I had no desire to offend or upset her by suggesting she do such activities. The person who answered the help line knew all about punding so I had no need to go into details to any extent, I was asked the usual type of questions and some documentation of locally available "objects to be sorted" will be sent to me.
For several days we have been trying to find the power pack for her portable DVD player. I suspect she has "sorted" it into a box somewhere. She thinks she last used it when she was in hospital for the colonoscopy back last March, so it may have been left behind there. I will try to buy a replacement. Yesterday while searching for the power pack she found a deflated exercise ball in our shoe box; she was determined to inflate it, I refused to bother with it, really not the response for me to make. I am trying to interest her in machine embroidery again, but physical matters make it difficult, eyesight and lighting, seated in a wheel chair, dyskinesia of her legs beneath a sewing table. At the moment she is fastidiously cleaning the stove top, where she found some grime. Yesterday I ordered an internet radio for her to play in the dark hours when she sometimes lays awake for hours, for I think with preset station selection she will find it easier to operate than a range of fiddly MP3 players I have.
posted by Kilpike | 11:49 am
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