Chapter 549 - Slowing to a Dawdle
There is no conflict between my writing here this morning and my taking her down the street. She just does not wish to go; I'm too lazy to insist. And pushing her wheel chair along the same street and in and out of the same few shops is rather boring. Earlier in the week I suggested driving her to the big craft store at Q to buy some "pancake" thread that others had told her was very pretty to knit; but no, she didn't wish to go. The same suggestion yesterday received the answer she didn't like the trip. Is my driving that bad or is her spatial problems becoming worse?
Sunday 16th Feb: At 0625 two tone error beeps from the Duodopa pump after changing the cassette may be due to cassettes being used straight out of the fridge. Nurses, when the pump was first fitted, used to carry a cassette in a pocket for a time to take the chill off it. I have never bothered to follow that procedure. Perhaps this pump is more sensitive to the gel viscosity. I now try to expose a new cassette to ambient for a short while before use.
Monday 17th Feb: At 0915 I put her in bed on her RHS because of continuous strong dyskinesia; I rubbed her legs. She woke a little before 1000, cleaned teeth, onto loo then at 1100 we attended an appointment with the Speech Therapist at Community Health, referred to by the PD Day Clinic at hospital C. I think I, rather than her, spoke too much for we left there at 1215. Back home at 1430 she asked to lay down again so rather than bed, I reclined her in the wheel chair.
Tuesday 18th Feb: Her start to the day was no worse than normal but she didn't wish to attend Dance for Well Being today.
Wednesday 19th Feb: Her dyskinesia was bad at 0615 when I began the procedures with the pump. At 0710 I turned the pump off in the hope her thrashing legs may ease and had a shower. On my return her legs were worse. The pump was started again. I gave her two Soluble Panadol to ease leg pains. Her elbow rested on the pump buttons stopping it. She went to sleep. The Wild Dog Carer arrived about 0755, some minutes late. Although my attitude must have suggested I was not having a sunny morning, the Carer came into the bedroom, saying in a very loud cheery voice (which is sharply pitched anyway) "Good morning ---, how are you today?", immediately waking her and restarting the dyskinesia. As I began to rub her legs again, I gruffly responded "SHIT! I've only just got her to sleep and you've woken her!!!" Subdued, the woman left the room. I calmed the dyskinesias then told the Carer that I would shower her later, so she could go. The Carer asked whether she could be touched. Knowing that the Carer was about to touch her and pray, I said "Yes" and left the room; concern shown, care given, misguided perhaps but yet beneficial. By about 0900 I placed her on the commode then showered her, dressed her in disposables and a nightie and returned her to bed to sleep a little, for at 1000 she woke, wanting to get up. By this time, and since it was my Respite Day another carer had arrived. She remained in night attire all day. I left her with the Carer, going for lunch between about 1100 and 1300. She was well enough to attend a dental appointment at 1550, although we had to wait half an hour, about which I became rather annoyed.
Thursday 20th Feb: An average morning for a change after reducing her overnight flow rate from 3.3 to 3.0. Since she had a Podiatrist appointment at about 1230, I suggested we have morning tea at the W Club, then the appointment. We did that, deviating via her favourite junk shop now into the 50% era of its closing down sale before returning to the club for "lunch", then home. All well until was woken at 2300 when she began yelling, kept referring to a puzzle book. I repositioned her in bed, calmed her, rubbed her legs so by 2330 I returned to bed myself.
Friday 21st Feb: An appointment with the Optometrist as a follow up after her eye procedures. Her eye pressures were acceptable but there was some doubt about her vision measurements in determining whether she may be aided by reading glasses, for as had been realised by the ophthalmologist, one eye has an error due to the cataract procedure. She was unable to sit in the recliner to have the examination made using the complex piece of hardware normally used, so was performed by hand. Another appointment for 3 weeks was made when I will go prepared with slider board and lifting belt. Meanwhile I am to apply a gel onto her eyelids each night before she goes to sleep. Also I'm giving her the other eye drops and spray three times each day. At 1600 hallucinated that a woman was attempting to mount a bike out on the street.
A short interlude. I just returned from checking to see whether she was OK. She was, but in our bedroom having removed everything off of and out of our bedside cupboards, including phones as in landline and emergency, and about to ransack the "nursing station", a roll around with drawers containing dressings, tapes, cotton buds etc etc as well as being intent on washing down all the surfaces. Well intentioned and hygenic of course, a task I have postponed for months, activity that will cause me endless delay and frustration in finding those odds and ends into the foreseeable future! Under protest from her, I wheeled her into her "sewing room" to finish sorting her shoes into ones that are wearable (as in remaining on her feet during dyskinesia events), ruined (by wear and attempted modification) and un-wearable to be taken to Vinnies'. I had to return to her sewing room the two large plastic bags of shoes destined for Vinnies' some months ago but which had been left in the car.
Saturday 22nd Feb: We met our old friends, in town for a religious event, at the S Club. Unfortunately the event lasted two hours and lunch orders had ceased by the time they arrived so we made do with coffee and cakes.
Sunday 23 Feb: She asked to return to bed following showering by the Wild Dog Carer. At 0945 she was dressed and in her wheel chair for breakfast. My notes show she experienced dyskinesia on and off all day and evening. She finds the FitBit around her right leg to be uncomfortable so I have not been fitting it. Not that it matters, no professional takes any more notice of the print outs than they do of my clumsy efforts to describe the matters in words, verbally or written.
Another short interlude: When I checked on her again, she was not sorting her Amanda Markos pile of shoes but quietly stripping the zipper out a small bag using a pair of small bladed snipping scissors as sharp picks to tear away threads; pieces of thread are all over her clothing. I have no idea whether she thinks she is repairing or modifying the small bag. I took some images; strangely she does not react even though it is obvious what I am doing.
Monday 24th Feb: I leave the air conditioner running, set to 21 Celsius, all night and most days, believing that controlling the temperature and humidity seems to be good for her. At 1000 I took her to the Speech Therapy group for the first time. Although I didn't need to, I remained during the session, not intending to participate although I did so a couple of times. Next Monday I will not stay and I must tell both this group and the Dance for Well Being group that I believe she is probably gains more when I am not present. She needs as much time as possible away from my interference with her activities. She asked to have lunch at the nearby new cafe
Tuesday 25th Feb: Dance for Well Being.
Wednesday 26th Feb: Respite Day. She gave away to the Wild Dog Carer some fabric pieces from fat quarters bought expensively some years ago. When asked whether that was OK I said yes; at least the pieces may be put to good use rather than thrown into the garbage by others when our time comes.
Thursday 27th Feb: After being showered by the Wild Dog Carer she asked to return to bed. I dressed her when she wanted to get up at 0930. At 1230 I caught her "tapping the soil into position" of the peace lily pot which due to weight and size has to remain withing her reach on the floor, Although I was assured she was not replanting pieces of the lily, there was a reasonable quantity of soil on the floor,
Friday 28th Feb: I was woken at 0015, dyskinesias were bad needing legs rubbed before returning to sleep. At 0545 she was able to wake me after she was awakened by the Alexa alarm, which had not woken me although it must have been sounding from 0530 so I had better not use it anymore. She again said she did not wish to drive down to Q. Our day was "normal".
Saturday 29th Feb: At 0020 she woke me talking in her sleep. During the afternoon she asked to lay down on her bed while a friend of mine was here.
Today Sunday 1st March: A normal day so far, see the short interludes above. Now that I have spent most of the morning writing this blurb I must give her a smoothie lunch and Tim Tams. I am too slow scribbling these few notes, which is frustrating, but on completion of the chore I am relieved and less depressed. Later I must sort the bedroom. Another week, another month has begun.
Sunday 16th Feb: At 0625 two tone error beeps from the Duodopa pump after changing the cassette may be due to cassettes being used straight out of the fridge. Nurses, when the pump was first fitted, used to carry a cassette in a pocket for a time to take the chill off it. I have never bothered to follow that procedure. Perhaps this pump is more sensitive to the gel viscosity. I now try to expose a new cassette to ambient for a short while before use.
Monday 17th Feb: At 0915 I put her in bed on her RHS because of continuous strong dyskinesia; I rubbed her legs. She woke a little before 1000, cleaned teeth, onto loo then at 1100 we attended an appointment with the Speech Therapist at Community Health, referred to by the PD Day Clinic at hospital C. I think I, rather than her, spoke too much for we left there at 1215. Back home at 1430 she asked to lay down again so rather than bed, I reclined her in the wheel chair.
Tuesday 18th Feb: Her start to the day was no worse than normal but she didn't wish to attend Dance for Well Being today.
Wednesday 19th Feb: Her dyskinesia was bad at 0615 when I began the procedures with the pump. At 0710 I turned the pump off in the hope her thrashing legs may ease and had a shower. On my return her legs were worse. The pump was started again. I gave her two Soluble Panadol to ease leg pains. Her elbow rested on the pump buttons stopping it. She went to sleep. The Wild Dog Carer arrived about 0755, some minutes late. Although my attitude must have suggested I was not having a sunny morning, the Carer came into the bedroom, saying in a very loud cheery voice (which is sharply pitched anyway) "Good morning ---, how are you today?", immediately waking her and restarting the dyskinesia. As I began to rub her legs again, I gruffly responded "SHIT! I've only just got her to sleep and you've woken her!!!" Subdued, the woman left the room. I calmed the dyskinesias then told the Carer that I would shower her later, so she could go. The Carer asked whether she could be touched. Knowing that the Carer was about to touch her and pray, I said "Yes" and left the room; concern shown, care given, misguided perhaps but yet beneficial. By about 0900 I placed her on the commode then showered her, dressed her in disposables and a nightie and returned her to bed to sleep a little, for at 1000 she woke, wanting to get up. By this time, and since it was my Respite Day another carer had arrived. She remained in night attire all day. I left her with the Carer, going for lunch between about 1100 and 1300. She was well enough to attend a dental appointment at 1550, although we had to wait half an hour, about which I became rather annoyed.
Thursday 20th Feb: An average morning for a change after reducing her overnight flow rate from 3.3 to 3.0. Since she had a Podiatrist appointment at about 1230, I suggested we have morning tea at the W Club, then the appointment. We did that, deviating via her favourite junk shop now into the 50% era of its closing down sale before returning to the club for "lunch", then home. All well until was woken at 2300 when she began yelling, kept referring to a puzzle book. I repositioned her in bed, calmed her, rubbed her legs so by 2330 I returned to bed myself.
Friday 21st Feb: An appointment with the Optometrist as a follow up after her eye procedures. Her eye pressures were acceptable but there was some doubt about her vision measurements in determining whether she may be aided by reading glasses, for as had been realised by the ophthalmologist, one eye has an error due to the cataract procedure. She was unable to sit in the recliner to have the examination made using the complex piece of hardware normally used, so was performed by hand. Another appointment for 3 weeks was made when I will go prepared with slider board and lifting belt. Meanwhile I am to apply a gel onto her eyelids each night before she goes to sleep. Also I'm giving her the other eye drops and spray three times each day. At 1600 hallucinated that a woman was attempting to mount a bike out on the street.
A short interlude. I just returned from checking to see whether she was OK. She was, but in our bedroom having removed everything off of and out of our bedside cupboards, including phones as in landline and emergency, and about to ransack the "nursing station", a roll around with drawers containing dressings, tapes, cotton buds etc etc as well as being intent on washing down all the surfaces. Well intentioned and hygenic of course, a task I have postponed for months, activity that will cause me endless delay and frustration in finding those odds and ends into the foreseeable future! Under protest from her, I wheeled her into her "sewing room" to finish sorting her shoes into ones that are wearable (as in remaining on her feet during dyskinesia events), ruined (by wear and attempted modification) and un-wearable to be taken to Vinnies'. I had to return to her sewing room the two large plastic bags of shoes destined for Vinnies' some months ago but which had been left in the car.
Saturday 22nd Feb: We met our old friends, in town for a religious event, at the S Club. Unfortunately the event lasted two hours and lunch orders had ceased by the time they arrived so we made do with coffee and cakes.
Sunday 23 Feb: She asked to return to bed following showering by the Wild Dog Carer. At 0945 she was dressed and in her wheel chair for breakfast. My notes show she experienced dyskinesia on and off all day and evening. She finds the FitBit around her right leg to be uncomfortable so I have not been fitting it. Not that it matters, no professional takes any more notice of the print outs than they do of my clumsy efforts to describe the matters in words, verbally or written.
Another short interlude: When I checked on her again, she was not sorting her Amanda Markos pile of shoes but quietly stripping the zipper out a small bag using a pair of small bladed snipping scissors as sharp picks to tear away threads; pieces of thread are all over her clothing. I have no idea whether she thinks she is repairing or modifying the small bag. I took some images; strangely she does not react even though it is obvious what I am doing.
Monday 24th Feb: I leave the air conditioner running, set to 21 Celsius, all night and most days, believing that controlling the temperature and humidity seems to be good for her. At 1000 I took her to the Speech Therapy group for the first time. Although I didn't need to, I remained during the session, not intending to participate although I did so a couple of times. Next Monday I will not stay and I must tell both this group and the Dance for Well Being group that I believe she is probably gains more when I am not present. She needs as much time as possible away from my interference with her activities. She asked to have lunch at the nearby new cafe
Tuesday 25th Feb: Dance for Well Being.
Wednesday 26th Feb: Respite Day. She gave away to the Wild Dog Carer some fabric pieces from fat quarters bought expensively some years ago. When asked whether that was OK I said yes; at least the pieces may be put to good use rather than thrown into the garbage by others when our time comes.
Thursday 27th Feb: After being showered by the Wild Dog Carer she asked to return to bed. I dressed her when she wanted to get up at 0930. At 1230 I caught her "tapping the soil into position" of the peace lily pot which due to weight and size has to remain withing her reach on the floor, Although I was assured she was not replanting pieces of the lily, there was a reasonable quantity of soil on the floor,
Friday 28th Feb: I was woken at 0015, dyskinesias were bad needing legs rubbed before returning to sleep. At 0545 she was able to wake me after she was awakened by the Alexa alarm, which had not woken me although it must have been sounding from 0530 so I had better not use it anymore. She again said she did not wish to drive down to Q. Our day was "normal".
Saturday 29th Feb: At 0020 she woke me talking in her sleep. During the afternoon she asked to lay down on her bed while a friend of mine was here.
Today Sunday 1st March: A normal day so far, see the short interludes above. Now that I have spent most of the morning writing this blurb I must give her a smoothie lunch and Tim Tams. I am too slow scribbling these few notes, which is frustrating, but on completion of the chore I am relieved and less depressed. Later I must sort the bedroom. Another week, another month has begun.
posted by Kilpike | 12:14 pm
0 Comments:
Post a Comment
<< Home