Chapter 219 - In the Early Hours

I am eating two slices of raisin toast with a cup of Earl Grey at 6:30AM. Not so early now but I woke at 4 went to the 'loo and then had cyclic thoughts that prevented me sleeping. You know the sort of thing "I must remember to ....; then what if .......; that was interesting when ...; etc etc" then at the end of the list the sequence begins again. The only ways I can break the chain is to read a book or make a list of the thoughts so that the items may be actioned later in the day. However, either solution can wake her, even if I leave the bedroom, and if that then it is too cool without a track suit or other clothing. So I lay there hoping the cycle fades away; it doesn't, then at 6AM her alarm goes for her first meds of the day. She murmurs. I reply. She attempts to rise for the 'loo, sits on the edge of the bed, says "I can't stand up." I roll over, stretch across the aisle, reach for her fingers. As she begins to stand she cries out & sits back on her bed. Her right hip has intense pain as soon as her weight is placed on her leg. She tries again but fails. I rise, stand in front of her and with arms around each other she stands, making slight almost whimpering sounds. We turn ever so slightly in an attempt towards the bathroom. She moves each of her feet a centimetre or two; I hear the sliding sound of her feet on the carpet. "I can't walk; I have to go to the toilet" she says. "How about using that?" I say indicating the commode "Can you get that far?" about 1 metre away at the end of her bed. I had positioned it there several weeks ago after a similar experience on another night, although not used on that occasion. With me holding her, she shuffled to the commode, I lifted the lid & pulled down her incontinence pants, she sat and after an appropriate interval "Have you finished?" I helped her up, pulled her pants up again, she shuffled back & sat on the edge of the bed. I lay down. She got into bed on her own. "Didn't that hurt?" I queried. "No, only when my weight is on it." I then ticked off the things she should be doing, like treadmill, stretching exercises, sitting on hard chairs, not stooping. "But that's the disease." Of course it is but we must routinely combat it. "When was the last time you did stretching exercise? I haven't seen you doing any." "Last Monday." "At Physio!" She changes the subject slightly "At Physio they have us stretch while sitting down." I think to myself that once a week is not enough; that is simply training. I feel guilty that I am too occupied with my activities to encourage her to exercise without appearing to bully her. When I see her stooped over her walker my mind flicks back all those years ago, when she was still 16 and I 18 as we passed on Park Street, near the Museum. That was the first time I noticed her; in a straight skirt and a twin-set, medium height heels, swaying slightly from hip to hip as she went down the hill & I came up. And my eyes fill. So cruel.

A week ago I decided to retrieve the special mattress we bought a couple of years ago. It had been so good for her back until a hollow developed at the position of her hip then she was trapped in a "hole" and I replaced the original hard mattress. For a few nights now she has had good nights' sleep on the "new" one. The old one is parked on its side in the lounge room until I decide to place it up in the ceiling. A cow of a job which I had no wish to do until we were sure she can remain comfortable on the "new" one. A friend suggests keeping both mattresses on top of the base after removing the short legs from the latter; I will try this but i suspect she will need a step ladder of sorts to be able to get into bed.

The ACAT lady rang & then posted us the completed assessment. Much to her horror, she has been assessed in the "high care" category. She interprets this as being eligible to be locked away in a urine smelling home, where, like our now deceased next door neighbour a few years ago, the staff encourage patients to fill their incontinence pads/pants each night. After the paperwork arrived in the mail it was thrown onto my desk. She finds it hard to understand that the ACAT Assessment was a planning move without me or anyone wishing to incarcerate her. It is for emergency use only.

There is a filial obligation approaching in a northern city. A duty that I do not wish to perform; she says I should go and she can look after herself for a few days, we could drive there but that will mean 2-3 days of uncomfortable travelling and accommodation each way for her as well as a couple of nights up there; or we could both fly as we did last year. One of the thoughts that keeps me awake. I will not consider asking for emergency respite care since that means she will be here on her own or in a strange bed somewhere experiencing her horrors. Easier to not attend.

When we collected her next supply of Sinemet CR yesterday our friendly chemist said the stuff is returning to normal supply. She told me that she increased from 1/2 to a whole Madopar at 10PM each night.

She was tickled pink when she won a first prize for her lingerie bag & a second for her wall hanging at the Show in the little country town. "That's the first time I have won a prize for something I made." She then began a 2012 wall hanging calendar but there was insufficient time to complete it prior to the Show in our town.

She travelled well down the 4 lane to meet our friends in an RSL club for lunch the other day. All being well, on Wednesday we meet our Big Smoke friends at the club in the town in the other direction.