Chapter 345 - A Weekend That Wasn't
Wasn't quiet, last weekend that is. Last Friday afternoon Polly the PD Nurse in Hot Air City wanted my PWP in hospital for assessment that evening, or Saturday or Sunday. We opted for Sunday and a private hospital. The private hospital was not possible because the neurologist lacked bed access to it so the public had to be tolerated.
Saturday morning 0257 she woke me. She said "I feel at the bottom of a cliff, my back is broken". Some minutes later she said she had woken to a piercing pain in her back. At 0308 she looked at the bottom of the bed and said it looked "all twisted". I then helped her lay on her left side; "It's tingling all the way up to here" she said indicating her waist. Then she noticed the low buzzing sound from the control box on her bed.. Then she remembered she hadn't taken her 2am meds. Then a little later "All this tingling going up the backs of my legs to my waist". She wanted me to go back to sleep. Then she wanted the bed straightened with respect to the bedroom wall (the bed is wheeled). I lowered the bed's head end packed with pillows but she wanted it raised a little. Then she wanted the bed clothes back on saying "These things didn't happen in the other bed" (the one I'm now using). She woke me again at 5am due to back pain; again she had laid on her back for too long without moving.While she spent the remainder of Saturday at the "Sheltered Workshop" I entertained myself seeing "X-men" (a typical junkish attempt at science fiction) and reading New Scientist at the Club.
So on a rainy Sunday afternoon down we drove then difficulty parking close to the front door; she needed wheeling in her walker; stuck in a two bed ward; noise and people everywhere; an environment more than suitable for raising stress levels above normal if such is required for an assessment of an individual's performance. In an effort to minimise her stress (as well as mine) I cunningly changed her Apo pump and syringe at 1300 prior to leaving home, otherwise the infusion would have timed out around 2200 that night and who in the sodding place would have been available to complete the job? After all, this is a busy neurological department she was in, full of patients and short staffed (according to nurses we spoke to later). At least during daylight hours on Monday Polly the PD Nurse and associates were on duty. I suggested to the person who booked her in to make sure this hospital claimed against that tight arsed fund Medibank Private as public hospitals are intended to do (why should the tax paying public cover her costs when we are insured privately) but he returned later saying it was impossible to do so in her case (I did not understand the reasons). I left her at the hospital to have an excellent steak at the usual motel we stay at. Early Monday she rang me asking to be taken home because she had been moved to a smaller shared room, she was stressed, wanted out of the place. I rang Polly.
When I returned to see her late on Monday morning Polly the PD Nurse had replaced the Apo pump syringe. She was taken to physio but returned because she was too unstable. I left to drive home for the night.
Tuesday morning I returned to the hospital during her brief absence at physio, from where she was returned because her Apo pump had bleeped before running out of juice. There seemed no one was available to replace the syringe of juice so I did it. We had brought sufficient Apomine, saline, 20ml syringes and infusion needles to last a week because we had been told these may not be readily available. Hospital staff agreed to her self medicating with pills so Apomine was not much different.
Sometime later on Tuesday or early on Wednesday neurology staff examined her (I was not present since I had returned home) and Wednesday morning they decided to reduce her pill medications by about half immediately, then to "wean" her off Apomine in preparation for her to be examined by DBS and/or Duodopa specialists in Big Smoke City. A referral, we were given a copy, has been forwarded there. In the mean time, a nerve conduction test is scheduled for her at 0930 on the 23rd of this month. Then she was welcome to stay another night or leave for home, we opted for home, even though I had returned to stay several nights in the motel.
I replaced the Apo syringe again on Wednesday and we left for home mid-afternoon. Not quite the possible week long stay she expected thank goodness; although the hospital staff are excellent, no complaints at all, but cramped and short staffed conditions when we pay to avoid that are intolerable.
The given new schedule is a bit of a joke when other medical people keep telling us the importance of un-interrupted sleep; either catheters or incontinence bloomers being solutions to the problem of nocturia. The neurologists suggest taking Sinemet 100/25 at 2400 and 0400. Who gives a piddle?
Also, our own arrangements with a urologist in Hot Air City occur this week. Since her brief hospital stay she has opted not to wear the large fill-your-pants bloomers; preferring instead to use the commode. A shame I bought another couple of packs plus additional pads of the things. And we have a small stock of catheter bags as well in the cupboard.
I don't think I mentioned that the lifter/hoist ordered for her by TACP was rejected by Enable (a State body) because her Level 2 Home Care package, began when TACP "discharged" her after 8 weeks, is a Commonwealth responsibility therefore equipment and such are no longer funded by the State. I suppose the little sod who picked up so quickly on that small point win her/himself some browny points. In one way it doesn't matter because professionals say such equipment requires two persons to operate it, one not being the patient. I will remember this when I do my back or arms a disservice.
In attempting to understand the fine detail of these "packages" I stumbled upon a government web site (perhaps helpful people have referred me to it but I fail to remember) which has been helpful, yet vaguely incomplete. Much as I detest doing so, I rang the accompanying 1800 number, spoke to a helpful well informed woman who was able to answer my questions (only once verifying one point with a superior); when I made some off-hand facetious comment about public servants, she protested that she worked for an answering service contracted by the Commonwealth to answer questions. One can only wonder whether real persons work at all those government desks; but of course, they must, because a lot are about to be retrenched to be replaced by contractors I presume.
Returning home at 1700 on Wednesday a quick trip to the loo before sitting on her recliner. By 1845 she felt cold, tired and had a weepy left eye. I switched the heating on. !940 asleep, dreaming, chuckling and violent kicking. 1945 laughing, speaking loudly and clearly although still asleep then on waking still felt cold. 2000 meds then at 2050 pushed her trolley to the loo before bed, wearing a pad but not the bloomers. The commode was placed in a convenient position at her bedside.
Thursday 0120 she woke having slept through 2400 meds, which she then took and I assisted her onto the commode. Again on the commode at 0337 when she took 0400 meds. She got herself onto the commode at 0645, her legs kicking wildly, mostly the right one going sideways. At 0700 I helped her shower seated on the commode and dressed by 0728. We had decided for a couple of mornings not to have Personal Care until we sorted ourselves out; I had come to the conclusion that doing her pump on going to bed was too much work when I was so very tired each night and perhaps mornings were more appropriate albeit more congested. The following continues to list events on her first full day back home:
0730 Sit to stand from bed, pushed trolley out to kitchen table.
0804 Meds, feet tapping briskly on the floor.
0900 Unable to sit to stand to get to recliner, needed assistance, chopping pumpkins to prepare pumpkin pies on small table at recliner.
0915 Phone call from her sister.
0930 Still cutting pumpkin.
1005 Sit to stand, pushed trolley to loo, piddle and poo.
1015 By alternating her hands on the fireman's pole, was able to pull up her incontinence pants and her slacks, then wash hands, push trolley to lounge room (all without assistance.
1050 Pushing trolley, ache down her left thigh.
1120 Can't sit to stand, assisted her with trolley to bed to change the Apo pump (timing has remained at late morning). She said her "feet were expanding from inside themselves, inside their skin", much pressure and tingling but not "burning".
1133 Pump off with 31 minutes left, new pump with 24 hours and 5 minutes.
1145 Wanted to stay on bed until 1200 meds.
1150 Both lower legs aching while seated on side of bed, raised bed to assist her off it. Needed to sit on a chair after leaving bedroom, severe pain in both legs, feet flat and shuffling.
1155 Head tingling, suddenly felt chilled, feet tapping.
1200 Attempted to assist sit to stand but failed.Transferred to back room in wheel chair where she remained for meds.
1230 Still in wheel chair, trimming pieces of pumpkin.
1330 Unable to sit to stand from wheel chair to go to loo, wheel chaired to loo for piddle, with much difficulty transferred her onto loo, when finished transfer onto walker
1340 wheeled into back room.
1350 Wheeled her to kitchen bench top and small wheeled table where she continued with the pumpkin pieces.
1400 Mashed pumpkin and making pies (I had cooked pumpkin in the microwave and provided her with other ingredients from the cupboard).
1550 While seated her feet were tap dancing and needed the thick square cushion beneath them for relief.
1630 Finished pies, needed loo, tingling on top of head. Wheeled her to loo.
1645 Walked out of loo after poo pushing walker and took one pie out of the oven (I had set up the oven and placed three pies into it earlier) then pushed walker to her recliner.
1715 Knitting
1830 Felt cold, needed a jumper
1900 Ate frozen dinner that I "prepared" plus some pumpkin pie and ice cream.
2000 Meds, watched TV.
2130 Pushed trolley to loo for piddle. Assisted her from loo to bedroom.
2145 Into bed.
2400 Meds
And so it goes on, and on .......
I arranged for Personal care to begin from Saturday morning 0800 and I replace the Apo pump and syringe around 0745.
Friday afternoon I had an appointment with a Social Worker (Shrink?) at Community Nursing. My PWP intended to go with me but she was unable to leave the car where she remained for an hour and a half. Next time I will arrange respite.
On Saturday she attended the Sheltered Workshop while I shopped for groceries and stuff then repaired our coat hanger which fell off the wall and rewired some flaky cabling to a couple of our TV points.
Some phone calls from friends interested in her state of affairs and a short time ago a friend from around the corner visited.
When I look outside the clear blue skied chilly weather makes me yearn for a drive into the bush, but all that happens is that I remember I must take washing off the line, probably damp by now.
Saturday morning 0257 she woke me. She said "I feel at the bottom of a cliff, my back is broken". Some minutes later she said she had woken to a piercing pain in her back. At 0308 she looked at the bottom of the bed and said it looked "all twisted". I then helped her lay on her left side; "It's tingling all the way up to here" she said indicating her waist. Then she noticed the low buzzing sound from the control box on her bed.. Then she remembered she hadn't taken her 2am meds. Then a little later "All this tingling going up the backs of my legs to my waist". She wanted me to go back to sleep. Then she wanted the bed straightened with respect to the bedroom wall (the bed is wheeled). I lowered the bed's head end packed with pillows but she wanted it raised a little. Then she wanted the bed clothes back on saying "These things didn't happen in the other bed" (the one I'm now using). She woke me again at 5am due to back pain; again she had laid on her back for too long without moving.While she spent the remainder of Saturday at the "Sheltered Workshop" I entertained myself seeing "X-men" (a typical junkish attempt at science fiction) and reading New Scientist at the Club.
So on a rainy Sunday afternoon down we drove then difficulty parking close to the front door; she needed wheeling in her walker; stuck in a two bed ward; noise and people everywhere; an environment more than suitable for raising stress levels above normal if such is required for an assessment of an individual's performance. In an effort to minimise her stress (as well as mine) I cunningly changed her Apo pump and syringe at 1300 prior to leaving home, otherwise the infusion would have timed out around 2200 that night and who in the sodding place would have been available to complete the job? After all, this is a busy neurological department she was in, full of patients and short staffed (according to nurses we spoke to later). At least during daylight hours on Monday Polly the PD Nurse and associates were on duty. I suggested to the person who booked her in to make sure this hospital claimed against that tight arsed fund Medibank Private as public hospitals are intended to do (why should the tax paying public cover her costs when we are insured privately) but he returned later saying it was impossible to do so in her case (I did not understand the reasons). I left her at the hospital to have an excellent steak at the usual motel we stay at. Early Monday she rang me asking to be taken home because she had been moved to a smaller shared room, she was stressed, wanted out of the place. I rang Polly.
When I returned to see her late on Monday morning Polly the PD Nurse had replaced the Apo pump syringe. She was taken to physio but returned because she was too unstable. I left to drive home for the night.
Tuesday morning I returned to the hospital during her brief absence at physio, from where she was returned because her Apo pump had bleeped before running out of juice. There seemed no one was available to replace the syringe of juice so I did it. We had brought sufficient Apomine, saline, 20ml syringes and infusion needles to last a week because we had been told these may not be readily available. Hospital staff agreed to her self medicating with pills so Apomine was not much different.
Sometime later on Tuesday or early on Wednesday neurology staff examined her (I was not present since I had returned home) and Wednesday morning they decided to reduce her pill medications by about half immediately, then to "wean" her off Apomine in preparation for her to be examined by DBS and/or Duodopa specialists in Big Smoke City. A referral, we were given a copy, has been forwarded there. In the mean time, a nerve conduction test is scheduled for her at 0930 on the 23rd of this month. Then she was welcome to stay another night or leave for home, we opted for home, even though I had returned to stay several nights in the motel.
I replaced the Apo syringe again on Wednesday and we left for home mid-afternoon. Not quite the possible week long stay she expected thank goodness; although the hospital staff are excellent, no complaints at all, but cramped and short staffed conditions when we pay to avoid that are intolerable.
The given new schedule is a bit of a joke when other medical people keep telling us the importance of un-interrupted sleep; either catheters or incontinence bloomers being solutions to the problem of nocturia. The neurologists suggest taking Sinemet 100/25 at 2400 and 0400. Who gives a piddle?
Also, our own arrangements with a urologist in Hot Air City occur this week. Since her brief hospital stay she has opted not to wear the large fill-your-pants bloomers; preferring instead to use the commode. A shame I bought another couple of packs plus additional pads of the things. And we have a small stock of catheter bags as well in the cupboard.
I don't think I mentioned that the lifter/hoist ordered for her by TACP was rejected by Enable (a State body) because her Level 2 Home Care package, began when TACP "discharged" her after 8 weeks, is a Commonwealth responsibility therefore equipment and such are no longer funded by the State. I suppose the little sod who picked up so quickly on that small point win her/himself some browny points. In one way it doesn't matter because professionals say such equipment requires two persons to operate it, one not being the patient. I will remember this when I do my back or arms a disservice.
In attempting to understand the fine detail of these "packages" I stumbled upon a government web site (perhaps helpful people have referred me to it but I fail to remember) which has been helpful, yet vaguely incomplete. Much as I detest doing so, I rang the accompanying 1800 number, spoke to a helpful well informed woman who was able to answer my questions (only once verifying one point with a superior); when I made some off-hand facetious comment about public servants, she protested that she worked for an answering service contracted by the Commonwealth to answer questions. One can only wonder whether real persons work at all those government desks; but of course, they must, because a lot are about to be retrenched to be replaced by contractors I presume.
Returning home at 1700 on Wednesday a quick trip to the loo before sitting on her recliner. By 1845 she felt cold, tired and had a weepy left eye. I switched the heating on. !940 asleep, dreaming, chuckling and violent kicking. 1945 laughing, speaking loudly and clearly although still asleep then on waking still felt cold. 2000 meds then at 2050 pushed her trolley to the loo before bed, wearing a pad but not the bloomers. The commode was placed in a convenient position at her bedside.
Thursday 0120 she woke having slept through 2400 meds, which she then took and I assisted her onto the commode. Again on the commode at 0337 when she took 0400 meds. She got herself onto the commode at 0645, her legs kicking wildly, mostly the right one going sideways. At 0700 I helped her shower seated on the commode and dressed by 0728. We had decided for a couple of mornings not to have Personal Care until we sorted ourselves out; I had come to the conclusion that doing her pump on going to bed was too much work when I was so very tired each night and perhaps mornings were more appropriate albeit more congested. The following continues to list events on her first full day back home:
0730 Sit to stand from bed, pushed trolley out to kitchen table.
0804 Meds, feet tapping briskly on the floor.
0900 Unable to sit to stand to get to recliner, needed assistance, chopping pumpkins to prepare pumpkin pies on small table at recliner.
0915 Phone call from her sister.
0930 Still cutting pumpkin.
1005 Sit to stand, pushed trolley to loo, piddle and poo.
1015 By alternating her hands on the fireman's pole, was able to pull up her incontinence pants and her slacks, then wash hands, push trolley to lounge room (all without assistance.
1050 Pushing trolley, ache down her left thigh.
1120 Can't sit to stand, assisted her with trolley to bed to change the Apo pump (timing has remained at late morning). She said her "feet were expanding from inside themselves, inside their skin", much pressure and tingling but not "burning".
1133 Pump off with 31 minutes left, new pump with 24 hours and 5 minutes.
1145 Wanted to stay on bed until 1200 meds.
1150 Both lower legs aching while seated on side of bed, raised bed to assist her off it. Needed to sit on a chair after leaving bedroom, severe pain in both legs, feet flat and shuffling.
1155 Head tingling, suddenly felt chilled, feet tapping.
1200 Attempted to assist sit to stand but failed.Transferred to back room in wheel chair where she remained for meds.
1230 Still in wheel chair, trimming pieces of pumpkin.
1330 Unable to sit to stand from wheel chair to go to loo, wheel chaired to loo for piddle, with much difficulty transferred her onto loo, when finished transfer onto walker
1340 wheeled into back room.
1350 Wheeled her to kitchen bench top and small wheeled table where she continued with the pumpkin pieces.
1400 Mashed pumpkin and making pies (I had cooked pumpkin in the microwave and provided her with other ingredients from the cupboard).
1550 While seated her feet were tap dancing and needed the thick square cushion beneath them for relief.
1630 Finished pies, needed loo, tingling on top of head. Wheeled her to loo.
1645 Walked out of loo after poo pushing walker and took one pie out of the oven (I had set up the oven and placed three pies into it earlier) then pushed walker to her recliner.
1715 Knitting
1830 Felt cold, needed a jumper
1900 Ate frozen dinner that I "prepared" plus some pumpkin pie and ice cream.
2000 Meds, watched TV.
2130 Pushed trolley to loo for piddle. Assisted her from loo to bedroom.
2145 Into bed.
2400 Meds
And so it goes on, and on .......
I arranged for Personal care to begin from Saturday morning 0800 and I replace the Apo pump and syringe around 0745.
Friday afternoon I had an appointment with a Social Worker (Shrink?) at Community Nursing. My PWP intended to go with me but she was unable to leave the car where she remained for an hour and a half. Next time I will arrange respite.
On Saturday she attended the Sheltered Workshop while I shopped for groceries and stuff then repaired our coat hanger which fell off the wall and rewired some flaky cabling to a couple of our TV points.
Some phone calls from friends interested in her state of affairs and a short time ago a friend from around the corner visited.
When I look outside the clear blue skied chilly weather makes me yearn for a drive into the bush, but all that happens is that I remember I must take washing off the line, probably damp by now.
posted by Kilpike | 4:58 pm
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