Chapter 463 - Odd Things
During the last week her sewing room was a mess as she moved lots of books out to the TV room and "sorted" fabrics and stuff. Monday I began helping her clean up when I discovered her searching the Yellow Pages to find where old clothes could be dumped instead of cleaning up. She was unable to see that doing so was a distraction late in the afternoon; several garbage bags with old clothes remain in the garage.
Did I mention I bought a pair of padded covers for the side rails on her bed? After I found her one night laying partially across the bed, feet and hands entangling in the rails. They fit reasonable well except on the cover on the room side I have had to sticky tape down the top edge for her to be able to see her clock and to minimise claustrophobic feelings. Also bought a pillow slip that helps maintain ambient temperature of her head. The horse shoe shaped neck pillow bought at Kmart was used once and found to give her a headache across the eyes but perhaps she wore it too long.
Tuesday night she woke me at nearly 2200 (we both must have been tired that night to be asleep then) to tell me she was on the "wrong side" of her bed, which is hard to do in a single bed. That morning she woke with a painful back.
The Duodopa pump in regular use failed to switch to Morning Dose mode on Wednesday; its replacement arrived this morning.
We attended a seminar conducted by the state PD organisation at the local club on Thursday. The usual lousy room for such things; poor acoustics, projected slides too small to read, several diagrams not explained fully. She told me later that she "didn't understand any of it". That surprised me; after 25 years of PD experience.
Friday was a messy day. Mid morning she had taken herself to the loo, messed her pants. She had a second shower while I cleaned the loo. After she showered and things had been cleaned, I was reattaching the Duodopa pump when she asked "What is that for?" pointing to the Peg-J tube. That startled and puzzled me; such a question from someone who has had the tube coming out of her stomach wall for 2 years.
Some weeks ago I discontinued giving her Benefibre along with Movicol at breakfast time as recommended when she had the colonoscopy. When she became too loose the Benefibre was discontinued. Then quite recently I reduced the Movicol to 1/2 a sachet so mid last week she was straining, complaining of always have an urge, doing peanuts and marbles only, so back to a full Movicol on Thursday morning. Friday I rang the incontinence nurse at Community Health only to learn that she was away until this week and she is the "incontinence nurse" on Tuesdays. Perhaps I'll get a call tomorrow. I'm pleased this episode waited a day to happen.
On most nights she yells and laughs in her sleep, waking me. I'm having her take her body temperature with her ear temperature sensor which shows between 35 and 37 C when she says she is "boiling" and I find her face/head feels at ambient but her legs and feet feel very hot to me, so I must set up my multi-meter's thermistor probe to record skin temperatures. At PD clinics she is often asked about hallucinations; she often sees shadows or objects and asks whether such are something else. I wonder whether hallucinations may also involve other senses such as touch and temperature, not just the visual.
On Sunday when we went shopping again she said she was "doing everything backwards, felt confused'. Her right foot had crossed under her left (seated in the wheel chair) without her having willed it. Felt funny doing things. Did not remember the fluffy blue top the Wild Dog carer had dressed her in that morning.
Recently she has mentioned that her lower front teeth have moved, with one tilting inwards. She says they are not loose. Perhaps this is the beginning of periodontal problems so I have made an appointment for her for a dentist unseen before; others she has seen lack wheel chair access, referred her to Hot Air City and were "too rough". It may be at least 2 years since she has seen a dentist. She complains that I am domineering.
Did I mention I bought a pair of padded covers for the side rails on her bed? After I found her one night laying partially across the bed, feet and hands entangling in the rails. They fit reasonable well except on the cover on the room side I have had to sticky tape down the top edge for her to be able to see her clock and to minimise claustrophobic feelings. Also bought a pillow slip that helps maintain ambient temperature of her head. The horse shoe shaped neck pillow bought at Kmart was used once and found to give her a headache across the eyes but perhaps she wore it too long.
Tuesday night she woke me at nearly 2200 (we both must have been tired that night to be asleep then) to tell me she was on the "wrong side" of her bed, which is hard to do in a single bed. That morning she woke with a painful back.
The Duodopa pump in regular use failed to switch to Morning Dose mode on Wednesday; its replacement arrived this morning.
We attended a seminar conducted by the state PD organisation at the local club on Thursday. The usual lousy room for such things; poor acoustics, projected slides too small to read, several diagrams not explained fully. She told me later that she "didn't understand any of it". That surprised me; after 25 years of PD experience.
Friday was a messy day. Mid morning she had taken herself to the loo, messed her pants. She had a second shower while I cleaned the loo. After she showered and things had been cleaned, I was reattaching the Duodopa pump when she asked "What is that for?" pointing to the Peg-J tube. That startled and puzzled me; such a question from someone who has had the tube coming out of her stomach wall for 2 years.
Some weeks ago I discontinued giving her Benefibre along with Movicol at breakfast time as recommended when she had the colonoscopy. When she became too loose the Benefibre was discontinued. Then quite recently I reduced the Movicol to 1/2 a sachet so mid last week she was straining, complaining of always have an urge, doing peanuts and marbles only, so back to a full Movicol on Thursday morning. Friday I rang the incontinence nurse at Community Health only to learn that she was away until this week and she is the "incontinence nurse" on Tuesdays. Perhaps I'll get a call tomorrow. I'm pleased this episode waited a day to happen.
On most nights she yells and laughs in her sleep, waking me. I'm having her take her body temperature with her ear temperature sensor which shows between 35 and 37 C when she says she is "boiling" and I find her face/head feels at ambient but her legs and feet feel very hot to me, so I must set up my multi-meter's thermistor probe to record skin temperatures. At PD clinics she is often asked about hallucinations; she often sees shadows or objects and asks whether such are something else. I wonder whether hallucinations may also involve other senses such as touch and temperature, not just the visual.
On Sunday when we went shopping again she said she was "doing everything backwards, felt confused'. Her right foot had crossed under her left (seated in the wheel chair) without her having willed it. Felt funny doing things. Did not remember the fluffy blue top the Wild Dog carer had dressed her in that morning.
Recently she has mentioned that her lower front teeth have moved, with one tilting inwards. She says they are not loose. Perhaps this is the beginning of periodontal problems so I have made an appointment for her for a dentist unseen before; others she has seen lack wheel chair access, referred her to Hot Air City and were "too rough". It may be at least 2 years since she has seen a dentist. She complains that I am domineering.
posted by Kilpike | 12:16 pm
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