Chapter 130 - Why Don't I Listen?
In looking at my notes I just realised something important we should have told the Caring Physician on Tuesday. After all, the bloke gives her his full attention for at least half an hour, sometimes more. What I should have mentioned were the head pains she had last Sunday as I wrote in my last post. We did mention her difficulty standing upright and maintaining balance after washing her hair in the shower. He surprised us by saying that is a known problem, many people become dizzy & fall, or suffer TIA's (mini-strokes in my language) while washing hair under the shower due to low blood pressure to the brain when raising the arms high. I can see the headlines now: "Old farts suicide by self-crucifixion while standing under the shower". Anyway, after I rang for an appointment first thing on Monday morning we had a small domestic about the matter, she felt I was bullying by forcing her to go to the doctor. And I was able to get an appointment for 12:30 the following day! As usual, I'm ahead of myself.
From Monday she decided to drop the 2am Sinemet CR, instead having a CR at 6am, 10am, 2pm, 6pm & 10pm. I think we are sleeping better for not waking at 2am, although for at least a couple of mornings this week she has risen before 6am for the loo, found bed impossible then sat in her chair for an hour or two then returned to bed till about 10am. As a consequence, her showers have been much later once she is "on" after the 10am meds. Each morning she has needed help with drying or dressing after showering. This morning, Saturday, she wanted her collapsible director's chair placed in the bedroom at 5am but after finding it uncomfortable, needed help to go to her favourite chair outside in front of the TV where she stayed until about 7:30. I just had to wake her now for 10am meds and she has returned to sleep.
Her autonomic system continues to be a bother to her; the remote controlled pedestal fan that stands next to the TV often switches on for a minute or two to cool her down while watching TV; even on cool nights. Several times she has checked her blood pressure above 150/80 after being seated in her chair for a long period whereas she has always had readings less than 130/70 or thereabouts. Her core temperature always seems to be 36.5 by the digital IR ear thermometer.
Thursday was our local PD Group seminar hosting guest speakers from Big Smoke and Hot Air. She said afterwards she was able to "control things" during the entire 10am-4pm meeting. We had heard a couple of the speakers before. We approached the first speaker, a PD Clinical Nurse, to mention the step-change in her symptoms from the time of her fall 2 weeks ago and was advised to see our neurologist whenever sudden changes occur. We didn't say that a neurologist has not been seen for several years (anyway, he has now retired). I feel content that the Caring Physician gave her a good physical check. That neurologist she had seen was influential in over-medicating her and her memories are vivid & horrid of that. Yet from the PD Clinical Nurse's presentation I realise now that it is a given that PD patients are expected to accept a degree of dyskinesia to gain better movement. In our case, she is unable to tolerate it because the associated breathing & swallowing problems associated with such a state are not tolerable.
The presentation that caught my attention (as it progressed, at first I thought it was too warm & fuzzy) and seemed addressed to me in particular was given by the Counsellor of the state PD organisation. All about stress, anxiety & depression. I saw that we are gradually sliding down that gentle slope and I hope the alert may help us come out of it. The gradual avoidance of social gatherings, postponing activities, being content to remain at home with Internet or TV makes for an easier life in the short term but I feel the SAD (I just noticed that!! it wasn't part of the presentation) symptoms for both of us are growing. At the end of that presentation some poor old soul needed an answer to why she is unable to speak to people about her problems without having to listen to those of other people; the answer she received was possibly inadequate to help her. Yet the question made me realise that we need to be prepared to listen to the others before we can expect like in return. Earlier in the week I visited my friend on the other side of the village; he asked how she was & when I mentioned her fall the conversation immediately turned to the fall he had had the day before - he lives on his own, has insufficient social contact and needed to tell his story. I would have liked to expand on her problems. Which is better for me, to listen or to speak?
Our neighbour at the rear languishes in palliative care waiting for his end quite soon, now 10 days since he stopped dialysis. This preys on her mind, the thought of being helpless at the end of her own time, swimming in her own urine absorbed by extra large incontinence bloomers. She has discovered, when re-ordering her own supply, that these things are available in sizes capable of absorbing 4 litres of urine. Our ex-neighbour now in a nursing home in Big Smoke must be wearing something like that because the staff are not available to assist patients to the loo during the night and quite often neither during the day.
Then she is concerned about her own evacuation difficulties. We installed a bidet because a year or so ago she was having great difficulty wiping herself; when you think about it, a reasonable degree of manual dexterity is required to manipulate a handful of toilet paper even if one has the ability to lift one's posterior from the toilet seat. In her case she needs to grasp the fireman's pole I installed in front of the toilet within easy grasping distance. And then should her clothing fall around her ankles she needs to call me to rescue her. So the bidet is a great help in maintaining her personal hygiene, even though the Caring Physician says that women often suffer infection in other places by using same.
Now if all that is TOO MUCH INFORMATION, consider her situation when faced with having to using public toilets (should they be not marked by blood, urine or faeces and floors not littered with toilet paper, used & unused), caravan park toilets or even motel toilets. Even the toilet in our caravan is far from ideal due the cramped space limiting movement. And most "disabled" (I am often tempted to ask why the plumber is not called to fix them) toilets are designed (by healthy young individuals) with bars in the wrong positions, too great a space in front for a person with one with agrophobia tendencies and doors that even if they latch properly are beyond reach from a seated position. Let's face it, a hunter-gatherer lifestyle does have some things in its favour.
Anyway, early this morning in the deep dark we decided to contact our friends (eager to book caravan slots in a town up the road a bit) to delay the booking for a fortnight and also my Canadian 2nd cousin to say we cannot visit her in the Old Home Town before she returns home. So I made the phone calls. This means we have reduced our social contact once again; we must find our way out of the impending hole toward the light. A few mornings ago I drove up a country road for photos of gum trees for embroidery back grounds; a sense of release.
Just before noon I was called on my pocket CB; she had showered, washed her hair while seated on the shower chair then lost the ability to dry herself & to stand up right.
From Monday she decided to drop the 2am Sinemet CR, instead having a CR at 6am, 10am, 2pm, 6pm & 10pm. I think we are sleeping better for not waking at 2am, although for at least a couple of mornings this week she has risen before 6am for the loo, found bed impossible then sat in her chair for an hour or two then returned to bed till about 10am. As a consequence, her showers have been much later once she is "on" after the 10am meds. Each morning she has needed help with drying or dressing after showering. This morning, Saturday, she wanted her collapsible director's chair placed in the bedroom at 5am but after finding it uncomfortable, needed help to go to her favourite chair outside in front of the TV where she stayed until about 7:30. I just had to wake her now for 10am meds and she has returned to sleep.
Her autonomic system continues to be a bother to her; the remote controlled pedestal fan that stands next to the TV often switches on for a minute or two to cool her down while watching TV; even on cool nights. Several times she has checked her blood pressure above 150/80 after being seated in her chair for a long period whereas she has always had readings less than 130/70 or thereabouts. Her core temperature always seems to be 36.5 by the digital IR ear thermometer.
Thursday was our local PD Group seminar hosting guest speakers from Big Smoke and Hot Air. She said afterwards she was able to "control things" during the entire 10am-4pm meeting. We had heard a couple of the speakers before. We approached the first speaker, a PD Clinical Nurse, to mention the step-change in her symptoms from the time of her fall 2 weeks ago and was advised to see our neurologist whenever sudden changes occur. We didn't say that a neurologist has not been seen for several years (anyway, he has now retired). I feel content that the Caring Physician gave her a good physical check. That neurologist she had seen was influential in over-medicating her and her memories are vivid & horrid of that. Yet from the PD Clinical Nurse's presentation I realise now that it is a given that PD patients are expected to accept a degree of dyskinesia to gain better movement. In our case, she is unable to tolerate it because the associated breathing & swallowing problems associated with such a state are not tolerable.
The presentation that caught my attention (as it progressed, at first I thought it was too warm & fuzzy) and seemed addressed to me in particular was given by the Counsellor of the state PD organisation. All about stress, anxiety & depression. I saw that we are gradually sliding down that gentle slope and I hope the alert may help us come out of it. The gradual avoidance of social gatherings, postponing activities, being content to remain at home with Internet or TV makes for an easier life in the short term but I feel the SAD (I just noticed that!! it wasn't part of the presentation) symptoms for both of us are growing. At the end of that presentation some poor old soul needed an answer to why she is unable to speak to people about her problems without having to listen to those of other people; the answer she received was possibly inadequate to help her. Yet the question made me realise that we need to be prepared to listen to the others before we can expect like in return. Earlier in the week I visited my friend on the other side of the village; he asked how she was & when I mentioned her fall the conversation immediately turned to the fall he had had the day before - he lives on his own, has insufficient social contact and needed to tell his story. I would have liked to expand on her problems. Which is better for me, to listen or to speak?
Our neighbour at the rear languishes in palliative care waiting for his end quite soon, now 10 days since he stopped dialysis. This preys on her mind, the thought of being helpless at the end of her own time, swimming in her own urine absorbed by extra large incontinence bloomers. She has discovered, when re-ordering her own supply, that these things are available in sizes capable of absorbing 4 litres of urine. Our ex-neighbour now in a nursing home in Big Smoke must be wearing something like that because the staff are not available to assist patients to the loo during the night and quite often neither during the day.
Then she is concerned about her own evacuation difficulties. We installed a bidet because a year or so ago she was having great difficulty wiping herself; when you think about it, a reasonable degree of manual dexterity is required to manipulate a handful of toilet paper even if one has the ability to lift one's posterior from the toilet seat. In her case she needs to grasp the fireman's pole I installed in front of the toilet within easy grasping distance. And then should her clothing fall around her ankles she needs to call me to rescue her. So the bidet is a great help in maintaining her personal hygiene, even though the Caring Physician says that women often suffer infection in other places by using same.
Now if all that is TOO MUCH INFORMATION, consider her situation when faced with having to using public toilets (should they be not marked by blood, urine or faeces and floors not littered with toilet paper, used & unused), caravan park toilets or even motel toilets. Even the toilet in our caravan is far from ideal due the cramped space limiting movement. And most "disabled" (I am often tempted to ask why the plumber is not called to fix them) toilets are designed (by healthy young individuals) with bars in the wrong positions, too great a space in front for a person with one with agrophobia tendencies and doors that even if they latch properly are beyond reach from a seated position. Let's face it, a hunter-gatherer lifestyle does have some things in its favour.
Anyway, early this morning in the deep dark we decided to contact our friends (eager to book caravan slots in a town up the road a bit) to delay the booking for a fortnight and also my Canadian 2nd cousin to say we cannot visit her in the Old Home Town before she returns home. So I made the phone calls. This means we have reduced our social contact once again; we must find our way out of the impending hole toward the light. A few mornings ago I drove up a country road for photos of gum trees for embroidery back grounds; a sense of release.
Just before noon I was called on my pocket CB; she had showered, washed her hair while seated on the shower chair then lost the ability to dry herself & to stand up right.
posted by Kilpike | 9:39 am
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