Chapter 511 - Slowing Down
The chore of writing this material is becoming more and more a task to procrastinate about. I notice a "pulse" of some 70 views continues to occur in the stats on roughly a weekly basis. I sometimes wonder what machine driven procedure does that. Who cares?
Looking at the last post I am reminded that I have done nothing more about "advanced care directives". Our training with the sling lifter is in the doldrums. I formally asked Wild Dog Carers to locate an OT to train me and the expense to be billed to her package; the reply came back that "she was placed on a wait list". I asked our GP for a referral for such training, for me, so billing would come directly to me. I visited the health complex where OT's & physios have a gym. the receptionist took all my details and said their manager will call me. Well that's almost 2 weeks ago now without contact so I can only imagine that the place is terribly busy. While on the matter of physio, Wild Dog has been providing one of their community carers to give her mild 45 minute exercise sessions twice each week. The regular person was frequently away and sometimes the Wild Dog rostering was prone to "glitches" (their word) so I asked them to cancel the service. So now each day I supervise her doing sit-stands at the built-for-purpose rails plus some leg stretches against an elastic band.
I have set her Duodopa flow rate to 5.5 ml/hr, a rate that seems about optimum for her, somewhere between my needing to give excessive assistance standing her from wheel chair to Sara Stedy or loo/commode ( my way of detecting that she is "off") and excessive dyskinesia of her legs, which even by inspecting FitBit charts is more or less guess work. The dyskinesias almost always occur in a 1-2 hour burst around 1400, although may occur before lunch or sometimes much later. Some days all afternoon. The morning dose remains at 1.0, and the hardly ever used bolus is 3.0. She is unable to detect changes after a bolus.
She now has Symmetrel at about 0730 and 1200. Hallucinations, although non-threatening, tend to bother her enough to tell me, for example, of "little kids around her flower box" on our rear patio. I often find her staring at the floor, looking at cotton threads that don't exist. She is returning to re-arranging the contents of cupboards and drawers. Some weeks ago she pulled apart at least 2 dozen old ball point pens, discarding the ink tubes, muddling together springs and the little ratchet things before packing them away, without asking me to buy refills for the carcasses. From time to time a small pillow she made is retrieved to be decorated with lace trimming; only hand sewing is intended after pinning the lace onto the pillow but there is a lot of trouble threading needles and then the lace is re-arranged. At least 10 or more days have been spent with the pillow; I bought 3 or 4 sets of those wire loop needle threaders to ease the work. I tempt her to come shopping each Sunday but she says there is nowhere to shop and anyway she has enough clothes. Last week we met one of her 2nd cousins at the Club for lunch which she seemed to enjoy although I fear I did most of the talking. The Dance for Parkinson classes have re-commenced each Tuesday; she looks forward to that each week during school terms. Last week she saw the geriatrician again; he seems happy about her condition. As did the Allied Health group, including a neuro, on 30th January, at the other PD clinic she attends once each year at Big Smoke. After I mentioned that we had no idea of her weight, the clinic nurse coordinator produced a weighing chair onto which we were able to slide her from the wheel chair; her present weight is 51.5 kgms (later at home I weighed and deducted the weight of her clothes and shoes worn to the clinic). Our GP thought it best for her to see a dietitian so we saw one today; advice is to increase her protein and calcium intake.
Such is our way of slowing down.
Looking at the last post I am reminded that I have done nothing more about "advanced care directives". Our training with the sling lifter is in the doldrums. I formally asked Wild Dog Carers to locate an OT to train me and the expense to be billed to her package; the reply came back that "she was placed on a wait list". I asked our GP for a referral for such training, for me, so billing would come directly to me. I visited the health complex where OT's & physios have a gym. the receptionist took all my details and said their manager will call me. Well that's almost 2 weeks ago now without contact so I can only imagine that the place is terribly busy. While on the matter of physio, Wild Dog has been providing one of their community carers to give her mild 45 minute exercise sessions twice each week. The regular person was frequently away and sometimes the Wild Dog rostering was prone to "glitches" (their word) so I asked them to cancel the service. So now each day I supervise her doing sit-stands at the built-for-purpose rails plus some leg stretches against an elastic band.
I have set her Duodopa flow rate to 5.5 ml/hr, a rate that seems about optimum for her, somewhere between my needing to give excessive assistance standing her from wheel chair to Sara Stedy or loo/commode ( my way of detecting that she is "off") and excessive dyskinesia of her legs, which even by inspecting FitBit charts is more or less guess work. The dyskinesias almost always occur in a 1-2 hour burst around 1400, although may occur before lunch or sometimes much later. Some days all afternoon. The morning dose remains at 1.0, and the hardly ever used bolus is 3.0. She is unable to detect changes after a bolus.
She now has Symmetrel at about 0730 and 1200. Hallucinations, although non-threatening, tend to bother her enough to tell me, for example, of "little kids around her flower box" on our rear patio. I often find her staring at the floor, looking at cotton threads that don't exist. She is returning to re-arranging the contents of cupboards and drawers. Some weeks ago she pulled apart at least 2 dozen old ball point pens, discarding the ink tubes, muddling together springs and the little ratchet things before packing them away, without asking me to buy refills for the carcasses. From time to time a small pillow she made is retrieved to be decorated with lace trimming; only hand sewing is intended after pinning the lace onto the pillow but there is a lot of trouble threading needles and then the lace is re-arranged. At least 10 or more days have been spent with the pillow; I bought 3 or 4 sets of those wire loop needle threaders to ease the work. I tempt her to come shopping each Sunday but she says there is nowhere to shop and anyway she has enough clothes. Last week we met one of her 2nd cousins at the Club for lunch which she seemed to enjoy although I fear I did most of the talking. The Dance for Parkinson classes have re-commenced each Tuesday; she looks forward to that each week during school terms. Last week she saw the geriatrician again; he seems happy about her condition. As did the Allied Health group, including a neuro, on 30th January, at the other PD clinic she attends once each year at Big Smoke. After I mentioned that we had no idea of her weight, the clinic nurse coordinator produced a weighing chair onto which we were able to slide her from the wheel chair; her present weight is 51.5 kgms (later at home I weighed and deducted the weight of her clothes and shoes worn to the clinic). Our GP thought it best for her to see a dietitian so we saw one today; advice is to increase her protein and calcium intake.
Such is our way of slowing down.
posted by Kilpike | 3:27 pm
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