Chapter 617 - The Way Things Are

This morning while I sat here in my dungeon I heard a soft thumping. I discovered her on the other side of the doorway in the passage way, her dyskinetic feet bumping the door. I'm unsure whether the thumping was intended to attract my attention. I had difficulty opening the door wide enough because her wheel chair blocked the way. She has never learned how to move the wheel chair forwards or backwards or to turn it. I had to reach through the gap of the partially opened door. She must have taken ages to move from the TV in the back room to where she was bumping the door. When I asked why she didn't press the door bell button mounted on the wheel chair beneath her left knee she said she was unable to feel it. Later I tested her fingers on both hands to prove she has touch sensation in each finger and to name any finger I touched. So what she meant by being unable to "feel" the button really means she was unable to "navigate" her hands/fingers to a spot she was unable to see, in the same manner, she is unable to place her hands on the brake levers low down on each side of the wheel chair. She was once able to operate the brakes, now hardly ever, her hands flap around without touching anything. Anyway she had come to tell me that the Samsung tablet had lost video connection with the volunteer up in Cane Toad country. I will need to find a better position to mount the button.

Recently she began to use her fingers to handle her food even though I provide knife, fork and soup spoon for her to use and sometimes now I spoon feed her. Anything that requires too much chewing is removed from her mouth with fingers to be left on the side of her plate, sometimes wrapping the lump in tissue to disguise it. Usually she dribbles, leaving traces of licorice, chocolate, ice cream down her chin. Usually she is not conscious of this.

Today a Xmas card, delayed in the postal system, arrived from family. I gave it to her to look at. On the front of the card was a bell made of fine strips if tinsel stuff proud of the card surface. When I returned later I saw that most of the tinsel had been peeled away. When asked why she pulled the pieces off the card she said nothing, just stared at me with wide blue-grey eyes, pink rimmed, not attempting an explanation, for there was probably not one. She is not destructive really but loose threads, ends of bands and label-like bits attract her attention so she pulls at them until they can become rubbish. Some time ago I bought her a colourful pillow covered in patches of various fabrics giving different tactile sensations, a small zipper that works without opening to a cavity, short ribands with free ends to flutter and other bits and pieces. Designed to provide sensory stimulation and quite expensive for its size. She has largely ignored it until now when I have seen her concentrating on tucking the riband ends beneath other pieces. I'm expecting her to begin pulling at threads until holes are produced or the attachments are shredded, in a similar manner to strips of lace she has demolished.

Some time ago I bought her three skirts from Target. I had her try them on without actually wearing them. I am finding lowering and raising her slacks more and more difficult in toileting situations so tomorrow she has agreed to wear a skirt with an elastic waist band which should permit easy fitting or removal.

Now that I am using the sling lifter for all transfers and incontinence pants are fitted or removed while she lays on her bed, I have decided to use wrap-arounds rather than pull-ups, thus saving her being rolled side to side to pull them up. The wrap-arounds can be opened up, positioned on the bed, then her bottom lowered by the sling lifter onto it. I have yet to perfect the positioning operation, something similar to landing a helicopter in a strong breeze onto a bull's eye circle on an air craft carrier.

I woke at 0300 this morning to find my left knee very sore, causing me to limp as I checked on her. I found her laying on her back with her left leg bent, holding the knee in her hands. Her knee was very painful. I rubbed Deep Heat on it and returned to my bed. I worried, wondering what possible cause made both of our left knees to become so painful. At 0600 I searched for the side effects of the Moderna vaccine injections we had on Thursday; one is joint pains. That reduced my worry somewhat except I am now puzzled that her knee no longer troubles her whereas my knee remains very painful when walking or when attempting to kneel (No! Not to pray you twit). we both have muscular aches in our arms, another side effect.