Chapter 342 - A Milestone Passed
Her feet behave strangely. Last Tuesday, after spending the whole day on her walker at Respite and needing the wheelchair to transfer her from car to recliner at home, she complained that as I removed the elastic tubing on her left leg that touching one foot, either one, caused tingling sensations in the other. I think I have noted this effect before.
On Wednesday at 4am I woke when she thought she was rolling out of bed; I raised the rails while she took her 2am Sinemet. Her speech was slurred. The last of the antibiotic at breakfast. At 1:50 I found her on the plastic chair next to her loo unable to walk. Eventually at 2:15 I wheel chaired her to her recliner. She described burning in both legs and pain in her left arm. Again at 2015 she needed assistance to get off the loo.
The fact has dawned on me that when I am "respiting", away from home for an hour or two, and someone from the Care place is looking after her, she cannot be assisted to any great degree onto or off chairs or the loo. Against OHS rules. The "carers" are not allowed to lift her. No one has specifically mentioned this. When I asked one of the women who help shower her of a morning about lifting she said that when such help is required, the person in attendance will ring for assistance which will be here in 5 minutes (they work out of the institution about a kilometre distant). Perhaps that is a possibility if the backup assistance is ready and waiting; however I doubt whether such speedy response is available outside normal office hours. I queried the Coordinator of TACP to be told the same. All this is so very reasonable, yet begs the question about how the "resident" carer copes on his own. All very well on the one hand to repeatedly say that he needs respite but on the other not to be forth coming with the logistics of what the PWP may face in his absence. And should we ever have a lifter or sling to assist transferring her then such need to be operated by two people; where does that leave a lone carer? See further on about Saturday's experience.
Thursday I drove to Hot Air City for her appointment with Polly the PD Nurse. No more "free" chauffeur services now that she is discharged from TACP. We paused as usual at the rest stop with toilet facilities on the edge of Dry Lake. On the return trip I had a snooze at another rest stop after dining at a MacDonald's for lunch and wheeling her around a BIG W for some clothes and as an "outing" for her. At the Hospital I wheel chaired her to and from the appointment. Polly obtained approval from the urologist to increase her Apomine to 12ml per day. After returning home I made the following notes:
1745 seated on recliner feet on square pillow, unable to lift left foot, able to lift right foot slightly - sort of paralysed, I can easily lift either foot - negligible tingling, no burning but feet are a dead weight - feet are bare and cool, big toes feel large - hardly feels light touch on left foot but scratching hurts, right foot senses light touch better - touching big toes together causes tingling from calf of left leg to heel and little toe.
So Thursday night I filled the syringe with 12ml of Apomine and 8ml of saline and Friday morning was a bad one for her.
Some notes I sent to Polly on Friday:
**********************************************
0100 - [She] woke me, cramping in thighs and calves of both legs, I rubbed them with Ice Gel, giving some relief. Her mouth was dry, sipped water. About 0115 she was feeling better. 0120 checked pump reading as 20:51 and OK.
0440 approx - [She] used the commode after removing the Molicare pants which were quite heavy with content.
0600 meds failed to kick in until 0830, and then "suddenly" did so.
1000 meds taken normally but she said she was not "waiting for them as usual". [She] has been hand sewing most of the morning but she said she was going over the same actions (pinning pieces of fabric together etc) without getting anywhere but by 1130 her hands were freer and she made progress.
1145 I had her call [the Care Place] to ask whether she may attend Respite tomorrow, Saturday (in order to sample Saturday's activities to see whether suitable as respite). No one answered (all in a meeting it turned out) so [she] left a message and in specifying our phone number she muddled the numbers and I corrected her 3 times (I think) before she had the correct numbers and sequence. This bothers me because her ability to handle phone number strings normally amazes me.
When I asked her to describe her last night experiences she simply said "horrendous". It was difficult for her to describe what that meant and I had to persist to hear "back and legs cramped up", frequent piddling", "pants very heavy with piddle", "head tingles continuous since last night, not spasmodic as before", "dull head ache all day", "did not feel fine after shower and dressing".
{She] looks weary, speech "thick" at lunch time. I found her asleep in her recliner at 1350.
At 1400, about to take her meds, she pushed her trolley out to my dungeon to tell me both legs were aching as they were in bed last night, toes on both feet "sticking up" and feel "they don't belong" to her.
She looks tired and sluggish in mid afternoon.
******************************************************
Late on Friday a new adjustable bed arrived for her, one which is height adjustable, which is what we should have bought earlier but that was before I learned when she was in Re-hab that the height adjustment is really for the benefit of carers' backs when attending to patients, as when attaching infusion needles. So I now have her old adjustable bed, finding it much more comfortable than my old bed (which is in pieces in pride of place in the lounge room at the moment). Working at re-arranging our bedroom for a couple of hours was exercise I didn't wish for. Into bed at 2030 her left foot was tight from toes to arch whereas only her right toes were tight. The dull head ache had faded by 7pm, no burning sensations, was speaking OK but she was a little disoriented, now being in a bed on the other side of the room (her old bed was too heavy to move around; her new one has lockable wheels).
At 0130 Saturday morning I woke to find her playing with the bed controls, attempting to switch the wall mounted fan on, for the room temperature was unusually warm. She returned to sleep, missing the 2am Sinemet, waking again at 0530 with tingling right foot toes and over her entire left foot. Her right foot was tight; so was the left as well as up to the calf.
Prior to going around to the Sheltered Workshop for respite she used the loo for a poo, then found that the bidet failed to provide a wash cycle. I found that the seat's body detector was not working and no matter how I re-positioned her, the "occupied" light never came on, thus no wash cycle. She attempted to wipe herself with toilet paper but her right hand is incapable of reaching to the appropriate place, partly because of her shape and a smallish toilet seat. So we reached and proceeded beyond the milestone we both hoped we would never reach. I placed a surgical glove on my right hand and performed the function she had decided I would never have to do.
With that milestone behind (pun not intended) us I took her to respite where she had a pleasant day while I did some grocery shopping and watched the movie "Belle" an excellent movie and the only one worthy of watching in town at the moment, then a light lunch at the Club where I bumped into an acquaintance whose PWP is now in the nursing home section of their retirement village. He seemed a little lost.
Last night at 2200 meds time and Apo pump changeover I noticed that the heels of both her feet were bright pink; she said they "were burning up". She also needed Ice Gel across her shoulders. Again she slept through the 2am Sinemet, and that may be partly due to less sleep disturbance since she has been using the Molicare piddle pants at night (eg last Sunday) as well as the increase in Apo. Unfortunately for her back, when she woke at 0450 she had not moved from her right side where she had me position her last night. Her mouth was dry; she asked for her water bottle.
On Wednesday at 4am I woke when she thought she was rolling out of bed; I raised the rails while she took her 2am Sinemet. Her speech was slurred. The last of the antibiotic at breakfast. At 1:50 I found her on the plastic chair next to her loo unable to walk. Eventually at 2:15 I wheel chaired her to her recliner. She described burning in both legs and pain in her left arm. Again at 2015 she needed assistance to get off the loo.
The fact has dawned on me that when I am "respiting", away from home for an hour or two, and someone from the Care place is looking after her, she cannot be assisted to any great degree onto or off chairs or the loo. Against OHS rules. The "carers" are not allowed to lift her. No one has specifically mentioned this. When I asked one of the women who help shower her of a morning about lifting she said that when such help is required, the person in attendance will ring for assistance which will be here in 5 minutes (they work out of the institution about a kilometre distant). Perhaps that is a possibility if the backup assistance is ready and waiting; however I doubt whether such speedy response is available outside normal office hours. I queried the Coordinator of TACP to be told the same. All this is so very reasonable, yet begs the question about how the "resident" carer copes on his own. All very well on the one hand to repeatedly say that he needs respite but on the other not to be forth coming with the logistics of what the PWP may face in his absence. And should we ever have a lifter or sling to assist transferring her then such need to be operated by two people; where does that leave a lone carer? See further on about Saturday's experience.
Thursday I drove to Hot Air City for her appointment with Polly the PD Nurse. No more "free" chauffeur services now that she is discharged from TACP. We paused as usual at the rest stop with toilet facilities on the edge of Dry Lake. On the return trip I had a snooze at another rest stop after dining at a MacDonald's for lunch and wheeling her around a BIG W for some clothes and as an "outing" for her. At the Hospital I wheel chaired her to and from the appointment. Polly obtained approval from the urologist to increase her Apomine to 12ml per day. After returning home I made the following notes:
1745 seated on recliner feet on square pillow, unable to lift left foot, able to lift right foot slightly - sort of paralysed, I can easily lift either foot - negligible tingling, no burning but feet are a dead weight - feet are bare and cool, big toes feel large - hardly feels light touch on left foot but scratching hurts, right foot senses light touch better - touching big toes together causes tingling from calf of left leg to heel and little toe.
So Thursday night I filled the syringe with 12ml of Apomine and 8ml of saline and Friday morning was a bad one for her.
Some notes I sent to Polly on Friday:
**********************************************
0100 - [She] woke me, cramping in thighs and calves of both legs, I rubbed them with Ice Gel, giving some relief. Her mouth was dry, sipped water. About 0115 she was feeling better. 0120 checked pump reading as 20:51 and OK.
0440 approx - [She] used the commode after removing the Molicare pants which were quite heavy with content.
0600 meds failed to kick in until 0830, and then "suddenly" did so.
1000 meds taken normally but she said she was not "waiting for them as usual". [She] has been hand sewing most of the morning but she said she was going over the same actions (pinning pieces of fabric together etc) without getting anywhere but by 1130 her hands were freer and she made progress.
1145 I had her call [the Care Place] to ask whether she may attend Respite tomorrow, Saturday (in order to sample Saturday's activities to see whether suitable as respite). No one answered (all in a meeting it turned out) so [she] left a message and in specifying our phone number she muddled the numbers and I corrected her 3 times (I think) before she had the correct numbers and sequence. This bothers me because her ability to handle phone number strings normally amazes me.
When I asked her to describe her last night experiences she simply said "horrendous". It was difficult for her to describe what that meant and I had to persist to hear "back and legs cramped up", frequent piddling", "pants very heavy with piddle", "head tingles continuous since last night, not spasmodic as before", "dull head ache all day", "did not feel fine after shower and dressing".
{She] looks weary, speech "thick" at lunch time. I found her asleep in her recliner at 1350.
At 1400, about to take her meds, she pushed her trolley out to my dungeon to tell me both legs were aching as they were in bed last night, toes on both feet "sticking up" and feel "they don't belong" to her.
She looks tired and sluggish in mid afternoon.
******************************************************
Late on Friday a new adjustable bed arrived for her, one which is height adjustable, which is what we should have bought earlier but that was before I learned when she was in Re-hab that the height adjustment is really for the benefit of carers' backs when attending to patients, as when attaching infusion needles. So I now have her old adjustable bed, finding it much more comfortable than my old bed (which is in pieces in pride of place in the lounge room at the moment). Working at re-arranging our bedroom for a couple of hours was exercise I didn't wish for. Into bed at 2030 her left foot was tight from toes to arch whereas only her right toes were tight. The dull head ache had faded by 7pm, no burning sensations, was speaking OK but she was a little disoriented, now being in a bed on the other side of the room (her old bed was too heavy to move around; her new one has lockable wheels).
At 0130 Saturday morning I woke to find her playing with the bed controls, attempting to switch the wall mounted fan on, for the room temperature was unusually warm. She returned to sleep, missing the 2am Sinemet, waking again at 0530 with tingling right foot toes and over her entire left foot. Her right foot was tight; so was the left as well as up to the calf.
Prior to going around to the Sheltered Workshop for respite she used the loo for a poo, then found that the bidet failed to provide a wash cycle. I found that the seat's body detector was not working and no matter how I re-positioned her, the "occupied" light never came on, thus no wash cycle. She attempted to wipe herself with toilet paper but her right hand is incapable of reaching to the appropriate place, partly because of her shape and a smallish toilet seat. So we reached and proceeded beyond the milestone we both hoped we would never reach. I placed a surgical glove on my right hand and performed the function she had decided I would never have to do.
With that milestone behind (pun not intended) us I took her to respite where she had a pleasant day while I did some grocery shopping and watched the movie "Belle" an excellent movie and the only one worthy of watching in town at the moment, then a light lunch at the Club where I bumped into an acquaintance whose PWP is now in the nursing home section of their retirement village. He seemed a little lost.
Last night at 2200 meds time and Apo pump changeover I noticed that the heels of both her feet were bright pink; she said they "were burning up". She also needed Ice Gel across her shoulders. Again she slept through the 2am Sinemet, and that may be partly due to less sleep disturbance since she has been using the Molicare piddle pants at night (eg last Sunday) as well as the increase in Apo. Unfortunately for her back, when she woke at 0450 she had not moved from her right side where she had me position her last night. Her mouth was dry; she asked for her water bottle.
posted by Kilpike | 10:44 am
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