Chapter 14 - Days Go By

I tip-toed in to check on her and on the way re-positioned the toilet seat disturbed last night. "How can I call you if I cannot reach the radio?" (after a toilet trip in the night she was wrong way up in bed so as to lay on her left side). "There was nowhere to place the radio except on the bedside cupboard". Perhaps I need to hide it beneath her pillow, she will remember where it is. I lowered her legs over the side of the bed, raised her to a sitting position then assisted her to stand. Held her in my arms until she had her balance. "Hold me" she said. We shuffled in congo-line manner to the bathroom, me in the rear. I held her nighty up while she lowered her pants, then sat. I withdrew, she needs some privacy even though the door is wide open. Then I raised her to a standing position. Sometimes she needs her slip-on shoes on her feet so that she feels her feet solidly on the floor. My arms are around her as we struggle to raise her pants. "Are you holding me?" "Yes enough but not too tightly" "Hold tightly, I don't want to fall". Whenever she returns to an un-medicated state any slight incline becomes a steep slope, inches in from the edge of the bed becomes not-far-enough-in-not-to-fall-out. Shuffling back to the bedroom she decided she was half an hour late for medication but in checking our daily notes 7:30am is about average. We should be stricter with these medication times; on the other hand some suggest medicating as needed, we fear that approach so strictness in timing may remove some of the un-predictability. But does it? I suspect events that occurred days before may modify her performance today but there are too many variables to identify. For instance, on Monday she was alive enough to pedal the exercise machine; shower, dry & dress herself without assistance; make her bed & pack chicken pieces into little bags for the freezer. The remainder of Monday completely lost.

On Tuesday, expecting the much the same of the day she prepared for her KYB group, needing assistance in the shower (the floor sloped "too much"), assistance with dressing until at 10am she rang the ladies to apologise for not making it. I needed to visit the Cottage, suggested she come for a ride in the truck & we take her walker plus a firm garden chair in case she was up to going to KYB. She felt capable when we arrived there so I helped her into the hall with the ladies & returned after she phoned me almost an hour later. She was restless, sweaty & slow until late in the afternoon when she felt ON (alive) for a period and a reasonably tremor free evening.

Wednesday just a slow day. In the afternoon she was able to remain seated in the one place during our group meeting. Our friends were caring and laid hands on her & prayed for her. In the evening to the little quilting group at our village hall where she laid out a few squares onto backing paper that makes positioning easier.

She is needing more frequent assistance to rise from chairs. She continues pain free except for the tenderness from her fall on Sunday, her right hip hurts. Her sweats continue, requiring fans blowing on her - often her blouse & bra are damp to the touch - her skin is clammy. Her fear of unbalance ever present.

As I type she appears at the door of my dungeon, radio in hand. I look down, yes, mine is hanging around my neck. "Can you bring the washing basket out to the laundry please?" Another day has started. We decide she needs to increase her medication, no more than another dose a day, and perhaps move away from the slow release type. Some literature suggests it encourages her current symptoms. We will discuss this with the specialist-physician, the caring doctor who is not a neurologist, next week. Till then, we cope.