Chapter 393 - End of the Tether; How Far Away?
By Monday 10th August I decided a DuoDopa flow rate of 6.6 mL/hr had caused her much pain, discomfort and dyskinesia for the previous 9 days so I increased the flow to 6.7m not varying the rate since then. However, each afternoon I try to remember to turn the pump off for a half hour or so by 4PM for doing so seems to reduce the amount of dyskinesia she suffers, but is not always effective.
Up to the Highlands town to see the eye specialist again. He was pleased her eye pressures had dropped from more than 30 down to less than 20. Latanoprost is to be continued and a check up in 6 months.
After her shower the next day, Thursday, she cross threaded the attachment to the PEJ tube. Around lunch time she felt squeamish, again at 3PM and also tired. When I replaced the cassette at 1530 I noticed that the DuoDopa had been leaking onto her clothing, how much was hard to tell. That evening she was quite calm, spending hours on-line unsuccessfully looking for knitting patterns until 2230.
The following day we saw the OT at Community Health for clarification of the "single texture" diet she recommended for her. The main criteria seems to be not to have thin liquids and lumps of food in the mouth at the same time. The OT also obtained permission for me to deposit the partially used DuoDopa cassettes in the Community Centre's disposal bins, located within the building. Some days later I called in with a large plastic bag containing some 70 or so cassettes.
Some days she is very sleepy, dropping her head while seated in the wheel chair, maybe for only a couple of minutes. This morning as I fitted the DuoDopa pump she woke and spoke to me so I told her what I was doing and to go back to sleep, which she did! I attempt to fit the pump around 7AM without waking her so that I can have a shower first then clean the stoma and have her ready for the Wild Dog carers about 0750. Should she fully wake there is an urgent need for the loo, but then she usually piddles into her night time incontinence pants or into the commode as there is insufficient time to transfer her onto the loo.
The OT H and assistant J came to see her on Monday 17th August. One of the first H noted was that the wheel chair needed more padding on its seat before she acquired bed sores on her bum. H will investigate assistance for a lifter device and arrange for demonstrations on the usage. That evening I ordered a special pillow for the wheel chair from Pelican; she doesn't like using it because she senses she will slip off the seat; it arrived two days later. In the mean time we tried an inflated donut shaped pillow, which upset her, almost sliding her onto the floor.
That same day she accidentally sat on her lower right arm while putting herself on the loo; unable to extract it. She screamed into the CB. I had difficulty lifting her sufficiently to remove her arm. I thought the plight she got herself into should have been easy for her to resolve; another example of how far she has travelled?
Perhaps my imagination tells me she is punding more after returning to a DuoDopa flow of 6.7 mL/hr, but she is re-arranging the contents of the kitchen cupboards again, the lounge room again, her sewing room again, She is always keen to have the wheel chair jammed into our small kitchen. She begins knitting projects then abandons them. A week or two ago she knitted a beanie, we bought an artificial rose to attach to it, then she decided the beanie had "rabbit's ears" so pulled it apart. Several sets of needles have a few inches of knitting on them. She bought quite a lot of wool for a cardigan for me, but not finding a suitable pattern on line (there must be thousands?) has not returned to it; perhaps that is for the best, rather than ruin the wool by unpicking a half completed work.
Yesterday, to my horror, I noticed an abrasion on the rear side of her upper left leg, where some flabbiness exists now that she has lost some weight. I can only imagine the broken skin was caused by inserting and removing the commode pan at shower times as well as infrequently when contents of the pan need to be emptied, and the lip of the pan rubs on the flabby part. I placed a bandage and Calmoseptine over the area last night on going to bed; looking clearer this morning, I applied more of the same. If I'm unhappy with the area tomorrow I'll take her to see the Clinic Nurse.
What I now refer to as "punding" drives one towards insanity, she needs to sort and rearrange things, she gets ideas fixed in her mind and won't budge (today she sat on the loo from 1100 to 1410 (3 hours!!) because "there is something there" and should she remain long enough it would come away, she won't believe me when I say it's haemorrhoids (which she has). I detoured her towards productive activity by asking her to sort, fold or hang 4 baskets full of washing from the last few weeks; in checking just now little progress has been made. When I prevent/discourage her from a rearranging activity she becomes obtuse; I become angry. This is not where I want to go.
I need someone to talk to at these times. Several days ago a mate rang to chat about our various age related problems, his wife's recovery from an L5 cyst operation, his handling of domestic matters this past month, etc etc, then when I attempted to voice some of our issues he patronised me about being a good carer for so long. What bull shit! Patronising is not much help when one needs to off load stresses and strains. Then he decided we should change the topic from illnesses to their planned 7 week holiday in South America before drifting onto the topic of his very young grandchildren. Honestly, I was relieved when I was called on the CB radio for help getting on or off the loo, I forget which, then he was hard to shut down before I hung up. I must speak more seriously to the psychologist I see each month; usually about inconsequential matters.
And I'm bored to death discussing techo matters with another mate once each week; from that I intend to escape to pursue creative activities on my own once again. I have mentioned to several people that looking back over my life I have tended to be a loner, for most years working on my own, interacting with as few people as possible, for many reasons, some of which I can readily identify.
A friend from down South rang to talk to her some little while ago, I must see how she is. And I must take the washing off the line, in the gloomy dusk.
Up to the Highlands town to see the eye specialist again. He was pleased her eye pressures had dropped from more than 30 down to less than 20. Latanoprost is to be continued and a check up in 6 months.
After her shower the next day, Thursday, she cross threaded the attachment to the PEJ tube. Around lunch time she felt squeamish, again at 3PM and also tired. When I replaced the cassette at 1530 I noticed that the DuoDopa had been leaking onto her clothing, how much was hard to tell. That evening she was quite calm, spending hours on-line unsuccessfully looking for knitting patterns until 2230.
The following day we saw the OT at Community Health for clarification of the "single texture" diet she recommended for her. The main criteria seems to be not to have thin liquids and lumps of food in the mouth at the same time. The OT also obtained permission for me to deposit the partially used DuoDopa cassettes in the Community Centre's disposal bins, located within the building. Some days later I called in with a large plastic bag containing some 70 or so cassettes.
Some days she is very sleepy, dropping her head while seated in the wheel chair, maybe for only a couple of minutes. This morning as I fitted the DuoDopa pump she woke and spoke to me so I told her what I was doing and to go back to sleep, which she did! I attempt to fit the pump around 7AM without waking her so that I can have a shower first then clean the stoma and have her ready for the Wild Dog carers about 0750. Should she fully wake there is an urgent need for the loo, but then she usually piddles into her night time incontinence pants or into the commode as there is insufficient time to transfer her onto the loo.
The OT H and assistant J came to see her on Monday 17th August. One of the first H noted was that the wheel chair needed more padding on its seat before she acquired bed sores on her bum. H will investigate assistance for a lifter device and arrange for demonstrations on the usage. That evening I ordered a special pillow for the wheel chair from Pelican; she doesn't like using it because she senses she will slip off the seat; it arrived two days later. In the mean time we tried an inflated donut shaped pillow, which upset her, almost sliding her onto the floor.
That same day she accidentally sat on her lower right arm while putting herself on the loo; unable to extract it. She screamed into the CB. I had difficulty lifting her sufficiently to remove her arm. I thought the plight she got herself into should have been easy for her to resolve; another example of how far she has travelled?
Perhaps my imagination tells me she is punding more after returning to a DuoDopa flow of 6.7 mL/hr, but she is re-arranging the contents of the kitchen cupboards again, the lounge room again, her sewing room again, She is always keen to have the wheel chair jammed into our small kitchen. She begins knitting projects then abandons them. A week or two ago she knitted a beanie, we bought an artificial rose to attach to it, then she decided the beanie had "rabbit's ears" so pulled it apart. Several sets of needles have a few inches of knitting on them. She bought quite a lot of wool for a cardigan for me, but not finding a suitable pattern on line (there must be thousands?) has not returned to it; perhaps that is for the best, rather than ruin the wool by unpicking a half completed work.
Yesterday, to my horror, I noticed an abrasion on the rear side of her upper left leg, where some flabbiness exists now that she has lost some weight. I can only imagine the broken skin was caused by inserting and removing the commode pan at shower times as well as infrequently when contents of the pan need to be emptied, and the lip of the pan rubs on the flabby part. I placed a bandage and Calmoseptine over the area last night on going to bed; looking clearer this morning, I applied more of the same. If I'm unhappy with the area tomorrow I'll take her to see the Clinic Nurse.
What I now refer to as "punding" drives one towards insanity, she needs to sort and rearrange things, she gets ideas fixed in her mind and won't budge (today she sat on the loo from 1100 to 1410 (3 hours!!) because "there is something there" and should she remain long enough it would come away, she won't believe me when I say it's haemorrhoids (which she has). I detoured her towards productive activity by asking her to sort, fold or hang 4 baskets full of washing from the last few weeks; in checking just now little progress has been made. When I prevent/discourage her from a rearranging activity she becomes obtuse; I become angry. This is not where I want to go.
I need someone to talk to at these times. Several days ago a mate rang to chat about our various age related problems, his wife's recovery from an L5 cyst operation, his handling of domestic matters this past month, etc etc, then when I attempted to voice some of our issues he patronised me about being a good carer for so long. What bull shit! Patronising is not much help when one needs to off load stresses and strains. Then he decided we should change the topic from illnesses to their planned 7 week holiday in South America before drifting onto the topic of his very young grandchildren. Honestly, I was relieved when I was called on the CB radio for help getting on or off the loo, I forget which, then he was hard to shut down before I hung up. I must speak more seriously to the psychologist I see each month; usually about inconsequential matters.
And I'm bored to death discussing techo matters with another mate once each week; from that I intend to escape to pursue creative activities on my own once again. I have mentioned to several people that looking back over my life I have tended to be a loner, for most years working on my own, interacting with as few people as possible, for many reasons, some of which I can readily identify.
A friend from down South rang to talk to her some little while ago, I must see how she is. And I must take the washing off the line, in the gloomy dusk.
posted by Kilpike | 4:46 pm
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