Chapter 376 - An Experience Completed

I brought her home from Wild Dog last Tuesday, our respite experiment completed. I visited each day after 1600 to changeover the Apomine pumps.Now that she is home the pump replacement occurs around 1700, rather than 2200 as in the past, when we are both tired. More about that later. Although Wild Dog staff implied otherwise, she had them shower her each day because of the excessive sweating she experienced while there. Although her room had an independent air conditioner, it was not used because it dripped water, possibly because it was adjusted incorrectly (staff tended to set it to 19C) and iced up and the door from her room to the corridor was always left open. At first the window in the room was left open for cool air (it was open when she arrived) until night staff discovered it so and demanded it be kept closed for safety. So her bed clothes needed frequent replacement because of excessive sweating.The usual problems with Parky meds, the worst delay was 1 1/2 hours late. On one occasion I requested to speak to the RN; he was quite relaxed about the delay, other commitments and the like. I suppose just because a PWP is not likely to die in consequence of delayed meds there is no need to be on time. However, the RN said that she could have been assessed as competent to self medicate but no one else mentioned that and since this advice was given two nights before she was discharged I didn't bother to demand she be assessed.

Although she was promised an occasional visit by a physio, none appeared. The staff told her she was not to get out of bed, go to the loo on her own, or walk pushing her walker which I had taken in for her. The commode which came with the room was too high for her and was designed for an amputee, so I took in her own commode. She figured out a way to haul herself up a vertical rail in the shower so that staff could pull up or lower her pants. She was not always given Vitamin D or Movicol. Fortunately she was able to attend the craft activities every day except for Sundays and a public holiday (this is where she normally goes on Tuesdays and Saturdays).

Strange behaviour after missing 2200 meds on Thursday and Saturday nights. We are tending to go to bed earlier, both very tired, and with changing the pumps early each evening we are tending to go to sleep, not waking for her 2200 meds. Friday morning she was quite active, able to move reasonably easily using her trolley and even walked out to the car and easily got into it, for we were meeting the Ugly Sisters up the road for lunch; one of them had a birthday. Today, Sunday, she seems reasonable mobile for having missed the 2200 meds again. This reminds me of when I reduced the Apomine from 12ml to 10ml (with Dr I's approval) and her movement ability "improved" the following day, as it did when I increased the dose back to 12ml. Why did I do that? I must search back through these notes. I am quite positive that her mobility improved simply for changing her dosage; I wonder whether such behaviour has been noticed anywhere?

On the same Thursday she fell. I had made her a cheese and gherkin sandwich, cut into 4, for lunch. Having decided the bread was stale, she rose to take the sandwich to the microwave to warm the bread, for she says that softens it. Instead, grated cheese and all were strewn across the floor, she in the middle of it. No damage or pain to her, so the usual kneeling on a pillow in a staged assault up a chair. I made another sandwich.

We are finding a 10mm thick plastic board, slightly boomerang shaped, bought from Pelican, useful for her to get in and out of the car. One end of the board is pushed beneath her bum while she is on the wheel chair or seated in the car; the other end of the board rests on car seat or wheel chair. Then she "slips" along the board; works well unless her mobility is really bad and then she envisages all sorts of things such as falling. I also bought a seat made from thin slippery plastic sheet, with handles attached, but I have not tried that yet, since it needs to be slid beneath her bum, which tends to be immovable at the best of times, but I think it may be useful for transfers between chairs and the wheel chair.

Each day I am using a vibrator on the soles of her feet and TENS machines on her lower legs. Only one day has she used the pedals.