Chapter 422 - If I Only Had Time
I'm not keeping many notes these days, days which go too quickly to be remembered, or are too much of a muchness to be recorded, or maybe my memory, the machine, runs erratically. I jot what seems of import in our kitchen desk diary.
For instance, just after midnight the morning of 30th May she woke me "I'm burning up!", the bedroom fan was spinning, she was restless, arms & legs waving, wanted to get up. So I transferred her to the wheel chair in which she sat with her legs on the bed. I woke 3 hours later, she half asleep in the same position in the wheelchair. Minimal shaking so transferred her back into bed. She next woke when I attached the Duodopa pump at 0630 and returned to sleep while I tread milled and showered.
Last night much the same happened. Before the Wild Dog carer came to assist in her readiness for bed she sat quietly on the loo for at least 45 minutes, concerned that she was unable to pass a decent turd, "it's just stuck there!" even though she was passing small bits. I even had her use the pedal machine just in case the exercise helped; it didn't. After the pump was disconnected aroundt 2145 she was restless and alert. Her arms and legs were making large movements, much greater than when just shaking, her eyes were wide, staring, she was very hot, pink blotches on both cheeks. I went to sleep, dead tired. She woke me at 2300, bed clothes and pillows all over the place, arms and legs thrashing. She wanted to get out of bed; I demurred, tucked the bedclothes around her, twice before she settled. I awoke around 0230, without my CPAP mask on (damn!) but have no memory of her sleep state.
This morning I woke after 0600 to attach the Duodopa pump, she woke then dozed while the Morning Dose took effect and I tread-milled while watching a Great Courses lecture. By 0730 I had showered and dressed myself before transferring her to the loo on the Sara Stedy, then onto the commode and while waiting for Wild Dog care to arrive she attempted to tidy her bed clothes as she usually does while seated on the commode. I find doing so keeps her busy and is a form of exercise for her while I prepare breakfast. This morning the Wild Dog carer (scheduled for 0745 approximately) had not arrived by 0830 so I rang the after hours mobile number (since today is a public holiday for the peasants to celebrate the birthday of the Monarch) where I left a message (no one answered) saying "no one had turned up", that I was proceeding to shower and dress her and that I expected not to be charged for today. Someone rang back at 0920 with an explanation, to which I responded there was a management problem.
Most morning I have her use the pedal machine while I exercise with Wii Fit's Hula Hoops because I have found doing so has relieved pains in my right hip caused by manual transfers prior to buying the Sara Stedy. That is then followed by having her try to lower her left heel onto my Beeper Board for 200 beeps, then having her push her Forearm Walker (with rear wheels locked) the length of our timber floor, about 6 metres. Push walker forward, step with right foot, step with left foot, straighten left leg, then push walker etc etc. Last week she was able to accomplish six lengths; today only two.
Her feet used to slip off the pedal machine whether or not the pedals were powered or passive, so I hot glue gunned a pair of her shoes onto the pedals. Worked well, except I had difficulty putting her feet into the shoes due to her tremors and rigidity of her left ankle. So yesterday I bought a pair of men's slippers with velcro fastenings, glued those to the pedals; a good solution to the problem.
Physio A down at the local hospital suggested obtaining a referral from our GP for her to go into Rehab for a week or two. That is being processed. Once a week she sees Physio A who is pleased with her progress, modifying the removable cast made for her left leg in an attempt to correct the foot drop.
See what I mean - the time is now 1207 and half the day is gone? If I only had time. Sinatra had the same problem.
For instance, just after midnight the morning of 30th May she woke me "I'm burning up!", the bedroom fan was spinning, she was restless, arms & legs waving, wanted to get up. So I transferred her to the wheel chair in which she sat with her legs on the bed. I woke 3 hours later, she half asleep in the same position in the wheelchair. Minimal shaking so transferred her back into bed. She next woke when I attached the Duodopa pump at 0630 and returned to sleep while I tread milled and showered.
Last night much the same happened. Before the Wild Dog carer came to assist in her readiness for bed she sat quietly on the loo for at least 45 minutes, concerned that she was unable to pass a decent turd, "it's just stuck there!" even though she was passing small bits. I even had her use the pedal machine just in case the exercise helped; it didn't. After the pump was disconnected aroundt 2145 she was restless and alert. Her arms and legs were making large movements, much greater than when just shaking, her eyes were wide, staring, she was very hot, pink blotches on both cheeks. I went to sleep, dead tired. She woke me at 2300, bed clothes and pillows all over the place, arms and legs thrashing. She wanted to get out of bed; I demurred, tucked the bedclothes around her, twice before she settled. I awoke around 0230, without my CPAP mask on (damn!) but have no memory of her sleep state.
This morning I woke after 0600 to attach the Duodopa pump, she woke then dozed while the Morning Dose took effect and I tread-milled while watching a Great Courses lecture. By 0730 I had showered and dressed myself before transferring her to the loo on the Sara Stedy, then onto the commode and while waiting for Wild Dog care to arrive she attempted to tidy her bed clothes as she usually does while seated on the commode. I find doing so keeps her busy and is a form of exercise for her while I prepare breakfast. This morning the Wild Dog carer (scheduled for 0745 approximately) had not arrived by 0830 so I rang the after hours mobile number (since today is a public holiday for the peasants to celebrate the birthday of the Monarch) where I left a message (no one answered) saying "no one had turned up", that I was proceeding to shower and dress her and that I expected not to be charged for today. Someone rang back at 0920 with an explanation, to which I responded there was a management problem.
Most morning I have her use the pedal machine while I exercise with Wii Fit's Hula Hoops because I have found doing so has relieved pains in my right hip caused by manual transfers prior to buying the Sara Stedy. That is then followed by having her try to lower her left heel onto my Beeper Board for 200 beeps, then having her push her Forearm Walker (with rear wheels locked) the length of our timber floor, about 6 metres. Push walker forward, step with right foot, step with left foot, straighten left leg, then push walker etc etc. Last week she was able to accomplish six lengths; today only two.
Her feet used to slip off the pedal machine whether or not the pedals were powered or passive, so I hot glue gunned a pair of her shoes onto the pedals. Worked well, except I had difficulty putting her feet into the shoes due to her tremors and rigidity of her left ankle. So yesterday I bought a pair of men's slippers with velcro fastenings, glued those to the pedals; a good solution to the problem.
Physio A down at the local hospital suggested obtaining a referral from our GP for her to go into Rehab for a week or two. That is being processed. Once a week she sees Physio A who is pleased with her progress, modifying the removable cast made for her left leg in an attempt to correct the foot drop.
See what I mean - the time is now 1207 and half the day is gone? If I only had time. Sinatra had the same problem.
posted by Kilpike | 12:13 pm
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