Chapter 623 - Eating Matters

Early this afternoon when I checked on her, her feet were hard pressed against her DVD storage rack. She was stressed and sweating from the exertion of strong dyskinesia in her legs. As I pulled her wheel chair backwards and away from the corner I noticed both her hands grasping the Duodopa pump. When I asked why she was holding the pump like that she replied "So that it won't fall on the floor" then I saw the small screen on the pump indicated "DOSE" and her left thumb was resting on the button labelled "EXTRA DOSE". She told me she was unaware that she had pressed that button. Pressing that button while  the pump is running delivers an addition 2mL into the patient before the function is disabled for a number of hours. So my suspicion that she may turn off the pump by pressing the "STOP/START" button while holding the pump has been confirmed. (And I confess that at times I have forgotten to restart the pump following valid changes in operation) A few days ago I cut a rectangular section from an old Tupper Ware container and placed it inside the pump bag to prevent accidental button presses, while still allowing the pump screen to be seen. Although inadvertent button pressing was prevented, it was inconvenient to withdraw the piece of plastic whenever I needed to perform normal and valid pump operations, so after a day's trial I discarded the piece of plastic. I need to experiment further.

She experiences increasing difficulty chewing and swallowing food; any thing that is dry or crumbly, anything that is lumpy, anything that  forms balls of "dough" during chewing, anything that is "stringy", anything that is pellet shaped, anything that is diced, fruit skins, "skins" of batter, any food needing to be chewed. This general list includes specific items such as many biscuits, porridge, vegetables not cooked into mush, fruit cake containing sultanas, flaky grilled fish, soft bread, sticky date puddings, pineapple, green peas, small cubes of soft avocado, grapes and cherries, batter on fish, grilled red meats, chicken.

Food unable to be chewed well enough is either removed from her mouth with her fingers or spat into tissues and left on the plate; her hands often need cleaning. She usually needs a soup spoon to shovel food into her mouth and I frequently am the one needing to do the shovelling. Her clothes, wheel chair, Duodopa pump bag and the like usually catch most of the droppings. Quite often I place an apron on her at meal times. Scraps of food are found in crevices in the wheel chair or on the floor.

Her breakfasts have changed from toasted banana bread, or melted cheese on toast, to Nutri Grain to now porridge that comes in small sachets of suitably flavoured finely ground contents, although I doubt this will last because she is asking for copious quantities of brown sugar on top and once the porridge cools and thickens even additional milk and heating it is destined for the green bin. Also diced fruit and fruit juice.

Lunch is usually a banana and peanut butter smoothie (made with yoghurt, honey and four or five scoops of Sustagen) in a large glass, one or two Tim Tams and grapes and cherries (skins not swallowed)

Evening meals have been cottage pie, or lasagne or fish with vegetable of various types, all delivered frozen of course. I do not cook! Problems mentioned above have had me resort to ordering a variety of soups hoping that such will be nutritious and appetising enough for her. She enjoys dollops of sour cream in soups. I often give her peeled and diced tomatoes and diced very soft avocado sprinkled with garlic salt and lemon juice in place of conventional vegetables. Sweets during this season have mostly consisted of diced mango and ice cream.