Chapter 451 - A Calmer Week
Her rearranging of cupboards was less intense this week, some re-visits to the kitchen sink cupboard and the cupboard with the glass panels. She also attacked the fridge. Yes, perhaps a lot of tidying needed doing but I am having difficulty finding things that from my point of view are are in inconvenient positions and "like" are not always with "like".
My concern for her right foot was unnecessary. On Thursday the physio AB down at the hospital checked both legs and found no change in either. Wearing the caste on the left foot for at least a couple of hours each day as well as using the pedals was recommended. Each morning now while waiting for Wild dog carer to arrive to shower and dress I have her pedal; each evening after getting to bed I will attempt to fit the cast for a period.
Some months ago the counsellor D I talk to suggested I contact a support group in town but its office was always closed, phone calls went unanswered and there was no response from a web site query. Recently a friend told me the organisation had moved and went under another name. So on Wednesday I found the place, entered unannounced, to be politely listened to by a bloke R for half an hour. His only advice was to consider my "spiritual needs" by which I think he implied more than simple religious help, because he attempted to explain when I suspect I reacted a little. Other than that I don't remember him saying anything and I drew the conclusion there was no help for me from them. But then, I really can't remember asking for help other than attempting to describe the situation we were in after 25 years of PD. I came away from the place running late for an appointment to speak to D, who knows of R. I suspect that the inexperienced and unknowing don't see PD as a "mental" disease on a par with Alzheimer's and dementia. Or that carers are the same irrespective of the conditions experienced by the cared for one.
A beautifully fine day on Saturday encouraged me to take her along the recently constructed pathway along the banks of our little river. Since the access to the path was too steep at our end I drove a couple of kms to a more accessible spot from where I pushed her in the wheelchair almost back to our end of the path. An enjoyable walk except for her fear that I may push the wheelchair off the concrete path onto the grass and soft soil along side, tipping her out and perhaps into the river. Another example of her unwarranted fears of motion and physical positioning.
Then on Sunday morning at 0400 (unsure whether that was Daylight Saving or normal time on this transition night) she woke me to lower the side rail of her bed for her to sit with her legs over the side, her legs were very dyskinetic. About 20 minutes later I realised that I hadn't reduced her pump flow rate from 5.2ml/hr to 2.2!! After stopping and disconnecting the pump the dyskinesias eased, she dozed breathing deeply. At 0610 I restarted the pump at 2.2ml/hr but failed to record in my note book when/if I changed it back to 5.2 and whether I gave her the Morning Dose. I don't think I replaced the cassette because at 1635 she noticed it was empty without a sign of medication in the cassette. Then as I replaced the cassette I noticed the setting was 5.2, the correct value.
But for all my mistakes she had a good Sunday morning being wheeled around Target and the supermarket for the weekly shopping.
She continues to experience a sudden need for loo and sleep between 1400 and 1600 each day, after which she tends to be in a good state for about the same length of time she had slept
My concern for her right foot was unnecessary. On Thursday the physio AB down at the hospital checked both legs and found no change in either. Wearing the caste on the left foot for at least a couple of hours each day as well as using the pedals was recommended. Each morning now while waiting for Wild dog carer to arrive to shower and dress I have her pedal; each evening after getting to bed I will attempt to fit the cast for a period.
Some months ago the counsellor D I talk to suggested I contact a support group in town but its office was always closed, phone calls went unanswered and there was no response from a web site query. Recently a friend told me the organisation had moved and went under another name. So on Wednesday I found the place, entered unannounced, to be politely listened to by a bloke R for half an hour. His only advice was to consider my "spiritual needs" by which I think he implied more than simple religious help, because he attempted to explain when I suspect I reacted a little. Other than that I don't remember him saying anything and I drew the conclusion there was no help for me from them. But then, I really can't remember asking for help other than attempting to describe the situation we were in after 25 years of PD. I came away from the place running late for an appointment to speak to D, who knows of R. I suspect that the inexperienced and unknowing don't see PD as a "mental" disease on a par with Alzheimer's and dementia. Or that carers are the same irrespective of the conditions experienced by the cared for one.
A beautifully fine day on Saturday encouraged me to take her along the recently constructed pathway along the banks of our little river. Since the access to the path was too steep at our end I drove a couple of kms to a more accessible spot from where I pushed her in the wheelchair almost back to our end of the path. An enjoyable walk except for her fear that I may push the wheelchair off the concrete path onto the grass and soft soil along side, tipping her out and perhaps into the river. Another example of her unwarranted fears of motion and physical positioning.
Then on Sunday morning at 0400 (unsure whether that was Daylight Saving or normal time on this transition night) she woke me to lower the side rail of her bed for her to sit with her legs over the side, her legs were very dyskinetic. About 20 minutes later I realised that I hadn't reduced her pump flow rate from 5.2ml/hr to 2.2!! After stopping and disconnecting the pump the dyskinesias eased, she dozed breathing deeply. At 0610 I restarted the pump at 2.2ml/hr but failed to record in my note book when/if I changed it back to 5.2 and whether I gave her the Morning Dose. I don't think I replaced the cassette because at 1635 she noticed it was empty without a sign of medication in the cassette. Then as I replaced the cassette I noticed the setting was 5.2, the correct value.
But for all my mistakes she had a good Sunday morning being wheeled around Target and the supermarket for the weekly shopping.
She continues to experience a sudden need for loo and sleep between 1400 and 1600 each day, after which she tends to be in a good state for about the same length of time she had slept
posted by Kilpike | 11:00 am
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