Chapter 323 - Annus Horribilis Anus
Having avoided Latin during my few years in high school is my only excuse for translating my heading for this chapter as "Horrible Arse-hole of a Year". The Latin word "Merde" could be added although doing so destroys the symmetry of my Latin phrase. QEII is obviously a Latin scholar for she took care to spell the word for "year" correctly when she voiced her memorable quote some years ago. Merde happens.
On Xmas day I wheeled her to an empty house in our village where permission had been given for we waifs without local family to share the gluttony of the season. A pleasant meal it turned out to be. More resident "strangers" than long time residents as we are, so a way to meet some of the new people yet I can't remember their names, only some of their odd social manners; but pleasant people all the same. Our host took up a musical instrument on which he played a Xmas carol after handing out song sheets, but since no one sang along he played no more. A very elderly lady said grace, something very formal ritually voiced at army and navy messes, since from her conversation she obviously has a blue blooded military background. One question she asked was "when does it rain here?" as she is recently from an island state whose weather mirrors the mother country. Her prayer was answered that same afternoon when I needed to walk the few hundred metres back to our place in the rain, returning in the car to collect my PWP who had sat through the meal on her blue walker/wheel chair.
We came home from Xmas lunch carrying a quantity of left-overs. Then on Boxing Day we visited Friends around the corner for lunch so I had no need to eat that evening but she made herself a sandwich, Dagwood in nature, of the leftovers brought home on Xmas day. Boxing day began with us rising late and not restarting the Apo pump until 0913am, well into the OFF time prior to her 10am meds, meaning showering and dressing were very difficult. The following paragraph is portion of an email I sent to a close relative on Friday.
"A weird thing happened last night. [She] woke me at 00.15am because she was unable to raise herself enough to even sit on the side of the bed on the way to the commode. Then after sitting on the side of the bed for 1/2 an hour by which time she had pins & needles from her feet to the top of her head I transferred her to a chair using a new transfer belt we just bought on the advice of a physio and an OT. While on the chair her feet were supported on 3 pillows for comfort, trembling all the time. Suddenly at 2.11am she felt lovely and free, able to move all of a sudden, was yawning (whether due to medication or tiredness is unknown). A classical ON event! At both the beginning and ending of this 2 hour period I checked the Apo pump readings which were roughly what I calculated they should be so there appeared to be no interruption to the infusion rate. I checked the infusion point which was quite dry, clean and no sign of blood. Her last oral meds had been at 10pm about 2 hours before this period of immobility. In evaluating last night P admits to having a "chicken sandwich" around 9pm; I noticed it in passing but only now I'm told it consisted of two rounds of bread, butter, lots of chicken pieces, cole slaw and chutney. All because we spent most of the afternoon around at [Friends] helping them devour their "leftovers" so last evening I didn't prepare us a meal; I had some yoghurt and some fruit, P an ice cream. So this seems to be a classic case of delayed absorption of meds due to slow processing of food late at night. Some months ago a physio advised against having Metamusil with the evening meal because doing so will encourage nocturia; unfortunately, her nocturia persists even though the Metamucil is now taken at breakfast time."
My notes are more detailed:
0015 Woke me, very stiff, unable to raise herself off bed.
0024 Pump reading 08.21
0148 Sitting on side of bed pins & needles from feet to head
0150 Needed belt to transfer her to chair, feet on pillows
0211 Feels lovely, can move all of a sudden, yawns, can move all of a sudden. Pump 06.32
0217 Got back onto bed while I removed chair & brought back Commode. Rose from bed & sat on commode without help., then rose from commode & got back into bed.
0440 Can't move again or rather sit up. {Using} belt up & onto commode. Just tremors, no pins & needles
0446 Feet beginning to band, able to move feet whereas before just stiff with feet on 3 pillows
0449 Belted transfer back onto bed
0557 helped onto commode where [she] had meds then back into bed
0650 Helped onto commode after sitting on side of bed about 10 minutes trying not to wake me
Thus a typical night passed and a day began.
I had intended to video her difficulties during Friday but my weariness was too much. And I took no notes either, except that I recorded the number of 250ml glasses of water I gave her and the fluid volumes she voided because I wished to determine the volumes for 24 hours beginning Saturday morning, hoping the numbers may be of interest to medical types. I made the following notes for yesterday Saturday:
0755 Pump ran out
0811 Pump on 24.05
1005 BP 127/63 70 Tingling from toes to waist
1007 Head tingling
1220 Needed loo, left leg numb, unable to rise onto wheel cahir, in bathroom lifted onto commode, only 100ml
1300 wants to get out of wheel chair, can't pull herself out of chair by holding cupboard shelves. I lifted her up by the new belt but she makes no attempt to support herself by her legs, returned into wheel chair. I made decision to return to 1mg Sifrol [3 times per day in an attempt to give her more ON. The temptation is to increase Apo but I must not until advised] rather than 0.5mg. Her feet & legs numb, no feeling
1320 On pedal machine in powered mode [in the hope that passive exercise may induce normal sensations & movement in her feet and legs]
1330 Toes & soles of feet tingling
1335 Tingling sharper & now halfway up her calves
1345 Tingling to knees but not as strong as in feet
1350 Stopped pedalling because feet feel too tight. Touching feet on pedals gave no feeling
1400 Initially no feeling in left big toes, feeling in other toes and top of feet near ankles. Meds 1x Sinemet 200/25 1x Sifrol 1mg 1x Deralin 40mg 2x Motilium. [Noted that chemist is providing Sandoz which contains "carbidopa monohydrate" so I ask is this the same as in Sinemet? The carbidopa in Sinemet is also monohydrate]
1445 Began to feel "free and ON"
1450 wheel chair into loo onto commode, piddled, then onto loo for poo
1500 Standing stooped [hangs onto fireman's pole while I pull up pants]to return to wheel cahir with my help then onto recliner - seems to have brightened
1710 Needed loo, walked to bathroom [pushing trolley] was stuck immovable to get onto commode - did only 50ml, wheeled back to recliner on blue walker
1725 Both feet tingling
1800 meds 1 deralin, 1 Sinemet (Sandoz) 250/25
1825 Had to sit on loaned wheeled commode, attempted several places to have her lift herself to pull her pants down but had to do so in bathroom. Took pants of completely after piddling & dressed in nightie {seated on wheeled commode] Piddle 250ml Very dyskinetic.
2050 Into bed.
Sometime during the day I must have strained too hard attempting to transfer her between recliner/wheel chair/ blue walker/fixed commode/mobile commode because late afternoon I noticed a "floater" in my field of vision; a small dark dot in my left eye where there has been no sign of floaters of any sort since the macular operation there several years ago. Being dark and circular I assume it was blood, only one and I have not seen it today. My forearms are tender whenever I rotate them or manipulate my fingers, especially the left arm, which seems to be the arm I mostly use to help her. The new assistance belt is not much help; she is afraid of it aiding her to fall and I find it causes her clothes to slip upwards and becomes loose, she panics and attempts to grab things, such as the wheelchair, holding on fiercely making it difficult to seat her. We need some training with it, but the physio will wish to do that when she is ON, not when she is unable to support herself with her own legs and feet.
Fluid Intake & Voids for Saturday to Sunday morning
0720 250ml piddle (first of the day was 300ml at 0535 prior to 0600 meds)
0830 250ml water
0900 poop & piddle (piddle quantity unknown)
0915 250ml water
1010 250ml water
1105 250ml water
1220 100ml piddle
1450 110ml piddle
1515 250ml water
1715 50ml piddle
1730 250ml water
1830 250ml piddle
1835 140ml piddle
2030 130ml piddle
2100 150ml piddle to bed
2200 90ml piddle and asleep
0000 200ml piddle
0348 150ml piddle
0430 150ml piddle
0600 125ml piddle
Total fluid intake 1500ml
Total fluid void 1895ml
These figures indicate borderline nocturia polyuria with 37% of void volume and 3 voids during sleep hours. We have counted up to six times some nights. She is usually referred for urine tests, antibiotics then no follow up. I want her to take sedatives on going to bed, anything for a short term rest.
And how about today? Perhaps better than yesterday, except that tiredness is accumulative.
What a deteriorating crap year 2013 has been.
On Xmas day I wheeled her to an empty house in our village where permission had been given for we waifs without local family to share the gluttony of the season. A pleasant meal it turned out to be. More resident "strangers" than long time residents as we are, so a way to meet some of the new people yet I can't remember their names, only some of their odd social manners; but pleasant people all the same. Our host took up a musical instrument on which he played a Xmas carol after handing out song sheets, but since no one sang along he played no more. A very elderly lady said grace, something very formal ritually voiced at army and navy messes, since from her conversation she obviously has a blue blooded military background. One question she asked was "when does it rain here?" as she is recently from an island state whose weather mirrors the mother country. Her prayer was answered that same afternoon when I needed to walk the few hundred metres back to our place in the rain, returning in the car to collect my PWP who had sat through the meal on her blue walker/wheel chair.
We came home from Xmas lunch carrying a quantity of left-overs. Then on Boxing Day we visited Friends around the corner for lunch so I had no need to eat that evening but she made herself a sandwich, Dagwood in nature, of the leftovers brought home on Xmas day. Boxing day began with us rising late and not restarting the Apo pump until 0913am, well into the OFF time prior to her 10am meds, meaning showering and dressing were very difficult. The following paragraph is portion of an email I sent to a close relative on Friday.
"A weird thing happened last night. [She] woke me at 00.15am because she was unable to raise herself enough to even sit on the side of the bed on the way to the commode. Then after sitting on the side of the bed for 1/2 an hour by which time she had pins & needles from her feet to the top of her head I transferred her to a chair using a new transfer belt we just bought on the advice of a physio and an OT. While on the chair her feet were supported on 3 pillows for comfort, trembling all the time. Suddenly at 2.11am she felt lovely and free, able to move all of a sudden, was yawning (whether due to medication or tiredness is unknown). A classical ON event! At both the beginning and ending of this 2 hour period I checked the Apo pump readings which were roughly what I calculated they should be so there appeared to be no interruption to the infusion rate. I checked the infusion point which was quite dry, clean and no sign of blood. Her last oral meds had been at 10pm about 2 hours before this period of immobility. In evaluating last night P admits to having a "chicken sandwich" around 9pm; I noticed it in passing but only now I'm told it consisted of two rounds of bread, butter, lots of chicken pieces, cole slaw and chutney. All because we spent most of the afternoon around at [Friends] helping them devour their "leftovers" so last evening I didn't prepare us a meal; I had some yoghurt and some fruit, P an ice cream. So this seems to be a classic case of delayed absorption of meds due to slow processing of food late at night. Some months ago a physio advised against having Metamusil with the evening meal because doing so will encourage nocturia; unfortunately, her nocturia persists even though the Metamucil is now taken at breakfast time."
My notes are more detailed:
0015 Woke me, very stiff, unable to raise herself off bed.
0024 Pump reading 08.21
0148 Sitting on side of bed pins & needles from feet to head
0150 Needed belt to transfer her to chair, feet on pillows
0211 Feels lovely, can move all of a sudden, yawns, can move all of a sudden. Pump 06.32
0217 Got back onto bed while I removed chair & brought back Commode. Rose from bed & sat on commode without help., then rose from commode & got back into bed.
0440 Can't move again or rather sit up. {Using} belt up & onto commode. Just tremors, no pins & needles
0446 Feet beginning to band, able to move feet whereas before just stiff with feet on 3 pillows
0449 Belted transfer back onto bed
0557 helped onto commode where [she] had meds then back into bed
0650 Helped onto commode after sitting on side of bed about 10 minutes trying not to wake me
Thus a typical night passed and a day began.
I had intended to video her difficulties during Friday but my weariness was too much. And I took no notes either, except that I recorded the number of 250ml glasses of water I gave her and the fluid volumes she voided because I wished to determine the volumes for 24 hours beginning Saturday morning, hoping the numbers may be of interest to medical types. I made the following notes for yesterday Saturday:
0755 Pump ran out
0811 Pump on 24.05
1005 BP 127/63 70 Tingling from toes to waist
1007 Head tingling
1220 Needed loo, left leg numb, unable to rise onto wheel cahir, in bathroom lifted onto commode, only 100ml
1300 wants to get out of wheel chair, can't pull herself out of chair by holding cupboard shelves. I lifted her up by the new belt but she makes no attempt to support herself by her legs, returned into wheel chair. I made decision to return to 1mg Sifrol [3 times per day in an attempt to give her more ON. The temptation is to increase Apo but I must not until advised] rather than 0.5mg. Her feet & legs numb, no feeling
1320 On pedal machine in powered mode [in the hope that passive exercise may induce normal sensations & movement in her feet and legs]
1330 Toes & soles of feet tingling
1335 Tingling sharper & now halfway up her calves
1345 Tingling to knees but not as strong as in feet
1350 Stopped pedalling because feet feel too tight. Touching feet on pedals gave no feeling
1400 Initially no feeling in left big toes, feeling in other toes and top of feet near ankles. Meds 1x Sinemet 200/25 1x Sifrol 1mg 1x Deralin 40mg 2x Motilium. [Noted that chemist is providing Sandoz which contains "carbidopa monohydrate" so I ask is this the same as in Sinemet? The carbidopa in Sinemet is also monohydrate]
1445 Began to feel "free and ON"
1450 wheel chair into loo onto commode, piddled, then onto loo for poo
1500 Standing stooped [hangs onto fireman's pole while I pull up pants]to return to wheel cahir with my help then onto recliner - seems to have brightened
1710 Needed loo, walked to bathroom [pushing trolley] was stuck immovable to get onto commode - did only 50ml, wheeled back to recliner on blue walker
1725 Both feet tingling
1800 meds 1 deralin, 1 Sinemet (Sandoz) 250/25
1825 Had to sit on loaned wheeled commode, attempted several places to have her lift herself to pull her pants down but had to do so in bathroom. Took pants of completely after piddling & dressed in nightie {seated on wheeled commode] Piddle 250ml Very dyskinetic.
2050 Into bed.
Sometime during the day I must have strained too hard attempting to transfer her between recliner/wheel chair/ blue walker/fixed commode/mobile commode because late afternoon I noticed a "floater" in my field of vision; a small dark dot in my left eye where there has been no sign of floaters of any sort since the macular operation there several years ago. Being dark and circular I assume it was blood, only one and I have not seen it today. My forearms are tender whenever I rotate them or manipulate my fingers, especially the left arm, which seems to be the arm I mostly use to help her. The new assistance belt is not much help; she is afraid of it aiding her to fall and I find it causes her clothes to slip upwards and becomes loose, she panics and attempts to grab things, such as the wheelchair, holding on fiercely making it difficult to seat her. We need some training with it, but the physio will wish to do that when she is ON, not when she is unable to support herself with her own legs and feet.
Fluid Intake & Voids for Saturday to Sunday morning
0720 250ml piddle (first of the day was 300ml at 0535 prior to 0600 meds)
0830 250ml water
0900 poop & piddle (piddle quantity unknown)
0915 250ml water
1010 250ml water
1105 250ml water
1220 100ml piddle
1450 110ml piddle
1515 250ml water
1715 50ml piddle
1730 250ml water
1830 250ml piddle
1835 140ml piddle
2030 130ml piddle
2100 150ml piddle to bed
2200 90ml piddle and asleep
0000 200ml piddle
0348 150ml piddle
0430 150ml piddle
0600 125ml piddle
Total fluid intake 1500ml
Total fluid void 1895ml
These figures indicate borderline nocturia polyuria with 37% of void volume and 3 voids during sleep hours. We have counted up to six times some nights. She is usually referred for urine tests, antibiotics then no follow up. I want her to take sedatives on going to bed, anything for a short term rest.
And how about today? Perhaps better than yesterday, except that tiredness is accumulative.
What a deteriorating crap year 2013 has been.
posted by Kilpike | 3:56 pm
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