Chapter 391 - Wearing Out
She is no longer nodding off at breakfast, over her crumpet dripping with malt extract. Each morning after I assist her onto the commode, both legs kick together for some minutes and that I find novel, since at most times her legs kick/shake irregularly. The Personal Care lady this morning drew my attention to her legs; I simply said the legs kick in the morning before the medication is effective and again later in the day when her medication levels are high.
I seem to be assisting more frequently with helping her stand while Personal Care and I attempt to pull up her incontinence pants and slacks in position around her ankles. She leans forward onto her trolley, wheels locked, while we, one each side, each link an arm through hers and lift her and with our free hands grab at the pants around her ankles. As we do so, her bottom begins to bounce up and down at an ever increasing rate until all three of us tire of the effort and she drops seated back onto the bed. Three to four attempts are usually required to raise her clothes. She has to have her shoes on before these actions begin. Without shoes, she hurts her toes easily, which is strange since she usually is unable to tell whether her left foot is on the floor.
Her commode is the ideal device to use when putting on or taking off her overnight incontinence pants. Around 10PM the Duodopa pump is shut down and she uses the loo one last time while I spread the bloomers across the commode seat. The bloomers are the type that open out flat and have sand paper strips, obviously some sort of velcro, to attach the sides after wrapping around the body. I assist her to transfer from loo onto the commode, have her move a little to position the flattened bloomers before loosely wrapping the sides around her. Returning to the bedroom she lays on the bed where I pull tight the waist straps then the flap that comes up between her legs, giving that a good tug. The velcro tabs hold all in place but I add stick tape around and over those tabs for additional security and to prevent the rough sharp surfaces of the tabs from ever touching her skin. WE have had no overnight leakages for several weeks.
An early appointment at the local hospital for a modified barium swallow test last Wednesday. The speech therapist told me afterwards that her swallowing was reasonable and at the moment was no reason for concern. A report has been sent to our GP. Perhaps the swallowing is OK but something is causing food to form balls in her mouth, then she needs to spit them into tissue. She says different textures in her mouth at the same time cause this. Yet she is able to eat sliced tomato on dry biscuits and another time she is unable to swallow the skin of sliced fresh tomato.
On a Duodopa flow rate of 6.7 mL/hr (as set at West Beer hospital last week) her dyskinesias moved into mid evenings, sometimes earlier, sometimes later. That's good. But the most annoying part (to me) of her punding has continued. Have I mentioned the light weight jacket I bought that lacks sufficient pockets for my needs? She said she could add a pocket on the inside and stitch it exactly where an outside pocket is positioned. That sounded quite simple to me. So a square of fabric was stitched on using a running stitch, then she decided to go over that stitching with a zig-zig, unfortunately not in a straight line, then at least another row or two of zig-zag, before she decided to "strengthen" the new pocket pocket with bias binding, which has been snipped at, removed, more added. She was about to add another pocket onto the opposite side of the jacket until I argued with her not to add another one. She has been working at this new pocket, in fits and starts for about 2 weeks now, not continuously, perhaps an afternoon or morning here and there. A task she would have taken 1/2 an hour at most a few years ago. One afternoon I saw her attempting to thread the needle of the sewing machine; when I returned at least an hour later she was still attempting to thread the same needle with the same piece of thread. She is persistent if nothing else. A couple of days ago she was cutting at the strips of bias binding to trim them. The jacket has been abandoned for now after she began to add another piece of fabric, perhaps to make a pocket flap. I'm unable to dissuade her from these activities; it's simply maddening, I begin to lose my cool, I just have to walk away, not wishing to hurt her feelings. Today she began dressing a doll as a Sumo wrestler (the doll already looks the part); I'm interested to see the outcome. Because yesterday I reduced the Duodopa flow rate from 6.7 to 6.6 in the hope that the punding may reduce during this coming week or so.
Punding is just the most awful part of her problems. Obstinacy, single mindedness, irrational behaviour, concentrated attention. Watching her attempt a task that begins to go awry I see her fumbling to make corrections, making changes, pulling the whole apart and starting again. Much later giving up.
A few days ago she began to knit a beanie, a somewhat complicated design. She lost the site the pattern came from and when I was enlisted to find it again I discovered another site with a video clip demonstrating the technique. She watched the video several times, seemed to have mastered the pattern, yet she came home from Respite yesterday saying that she and another elderly lady had agreed the pattern was wrong, so possibly that project will be abandoned.
Last night prior to going to bed I found her digging through her sewing room looking for wadding to wrap around her feet to protect her painful toes. I convinced her to wear an old pair of woolly lined Ug boots to bed but these were abandoned as I got her into bed. I am about to order a bed frame to protect her feet. We had one on loan last year but she rejected it because her feet kicked against it.
On the way home from respite she said she felt better than on previous days, reduction in Duodopa flow rate perhaps? Here's hoping.
I seem to be assisting more frequently with helping her stand while Personal Care and I attempt to pull up her incontinence pants and slacks in position around her ankles. She leans forward onto her trolley, wheels locked, while we, one each side, each link an arm through hers and lift her and with our free hands grab at the pants around her ankles. As we do so, her bottom begins to bounce up and down at an ever increasing rate until all three of us tire of the effort and she drops seated back onto the bed. Three to four attempts are usually required to raise her clothes. She has to have her shoes on before these actions begin. Without shoes, she hurts her toes easily, which is strange since she usually is unable to tell whether her left foot is on the floor.
Her commode is the ideal device to use when putting on or taking off her overnight incontinence pants. Around 10PM the Duodopa pump is shut down and she uses the loo one last time while I spread the bloomers across the commode seat. The bloomers are the type that open out flat and have sand paper strips, obviously some sort of velcro, to attach the sides after wrapping around the body. I assist her to transfer from loo onto the commode, have her move a little to position the flattened bloomers before loosely wrapping the sides around her. Returning to the bedroom she lays on the bed where I pull tight the waist straps then the flap that comes up between her legs, giving that a good tug. The velcro tabs hold all in place but I add stick tape around and over those tabs for additional security and to prevent the rough sharp surfaces of the tabs from ever touching her skin. WE have had no overnight leakages for several weeks.
An early appointment at the local hospital for a modified barium swallow test last Wednesday. The speech therapist told me afterwards that her swallowing was reasonable and at the moment was no reason for concern. A report has been sent to our GP. Perhaps the swallowing is OK but something is causing food to form balls in her mouth, then she needs to spit them into tissue. She says different textures in her mouth at the same time cause this. Yet she is able to eat sliced tomato on dry biscuits and another time she is unable to swallow the skin of sliced fresh tomato.
On a Duodopa flow rate of 6.7 mL/hr (as set at West Beer hospital last week) her dyskinesias moved into mid evenings, sometimes earlier, sometimes later. That's good. But the most annoying part (to me) of her punding has continued. Have I mentioned the light weight jacket I bought that lacks sufficient pockets for my needs? She said she could add a pocket on the inside and stitch it exactly where an outside pocket is positioned. That sounded quite simple to me. So a square of fabric was stitched on using a running stitch, then she decided to go over that stitching with a zig-zig, unfortunately not in a straight line, then at least another row or two of zig-zag, before she decided to "strengthen" the new pocket pocket with bias binding, which has been snipped at, removed, more added. She was about to add another pocket onto the opposite side of the jacket until I argued with her not to add another one. She has been working at this new pocket, in fits and starts for about 2 weeks now, not continuously, perhaps an afternoon or morning here and there. A task she would have taken 1/2 an hour at most a few years ago. One afternoon I saw her attempting to thread the needle of the sewing machine; when I returned at least an hour later she was still attempting to thread the same needle with the same piece of thread. She is persistent if nothing else. A couple of days ago she was cutting at the strips of bias binding to trim them. The jacket has been abandoned for now after she began to add another piece of fabric, perhaps to make a pocket flap. I'm unable to dissuade her from these activities; it's simply maddening, I begin to lose my cool, I just have to walk away, not wishing to hurt her feelings. Today she began dressing a doll as a Sumo wrestler (the doll already looks the part); I'm interested to see the outcome. Because yesterday I reduced the Duodopa flow rate from 6.7 to 6.6 in the hope that the punding may reduce during this coming week or so.
Punding is just the most awful part of her problems. Obstinacy, single mindedness, irrational behaviour, concentrated attention. Watching her attempt a task that begins to go awry I see her fumbling to make corrections, making changes, pulling the whole apart and starting again. Much later giving up.
A few days ago she began to knit a beanie, a somewhat complicated design. She lost the site the pattern came from and when I was enlisted to find it again I discovered another site with a video clip demonstrating the technique. She watched the video several times, seemed to have mastered the pattern, yet she came home from Respite yesterday saying that she and another elderly lady had agreed the pattern was wrong, so possibly that project will be abandoned.
Last night prior to going to bed I found her digging through her sewing room looking for wadding to wrap around her feet to protect her painful toes. I convinced her to wear an old pair of woolly lined Ug boots to bed but these were abandoned as I got her into bed. I am about to order a bed frame to protect her feet. We had one on loan last year but she rejected it because her feet kicked against it.
On the way home from respite she said she felt better than on previous days, reduction in Duodopa flow rate perhaps? Here's hoping.
posted by Kilpike | 11:24 am
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