Chapter 417 - The Eye of the Beholder

A fortnight ago she came with me to a Hot Air City appointment for my mouth to be scanned for dental purposes. We arrived early, sat in the car for awhile then she needed a toilet so I roamed the building looking for a disabled loo. There was one adjacent to the room where I had my appointment. When we entered the room for my appointment  the woman there appeared flustered and confused, before suggesting that a scan was unsuitable for her because of the exposure time required. I explained that I was the one to be scanned; the woman was very relieved. Then while I was being positioned in the scanning machine I was asked whether "she" was my mother. More embarrassment. That is the first time in quite a few years that we have been asked such a question. Makes me wonder how frequently strangers leave such a question unasked.

Physio A at the hospital visited one afternoon to see the Sara Stedy, saying it was better for her to do sit-to-stands in it rather than the rails in the garage, partly because there was much less strain on her shoulders when beginning a stand from an almost upright position. Then at the appointment last Wednesday a "boot" was loaned for intermittent use now that the Botox had relaxed the left leg muscles. I attach the boot each day, tightening the velcro straps which place pressure on her leg and foot to force the heel towards the floor. I need to check with finger to ensure that no pressure points develop. I am not very confident about how well the boot and exercise are contributing to returning her foot to normal. Although compliant when I place the boot on her left leg and help her exercise, she thinks she should be able to place her left heel on the floor even now, not seeming to understand haw gradual the process is.

For the previous two Sundays she was taken shopping by a Wild Dog care lady but not today. I took her around two clothing shops last Monday (there was nothing she wished to buy) when we went to Hot Air City to buy some high density foam blocks to be used as foot rests and a wedge beneath her legs in bed.

I gave up attempting to make a couple of early Android tablets operate reliably for her to play some games so bought her a new Samsung 9.7" model which works well except I am having difficulty preventing pop-ups which confuse her in the middle of a game.

Yesterday some friends from Steel City visited for a BBQ; giving us another day of "holiday". So she has missed two respite days; Wednesday and Saturday this week.

On Thursday I video'd her legs, expecting them to shake as vigorously as they did the afternoon before when I took her to our GP to show him bruising on her legs which I thought may be thrombosis problems; he didn't think so unless bruising happens on other parts of her body. Her last blood tests gave no indication of such problems. A student doctor was most interested in her PD symptoms.

On Friday I again increased the Duodopa flow rate, as agreed with Doctor F., from 4.8 to 5.0 ml/Hour. So far her punding has not worsened, although she continues to be easily distracted. She often notices an item "out of place" as she begins breakfast or the like, becomes wholly absorbed in a task such as re-arranging the contents of the fridge or the food cupboard and protests loudly when I attempt to return her to a task at hand. As Wild Dog care ladies are about to leave she frequently raises a topic with them, or shows them a piece of sewing, and they politely take notice of her rather than continue to the door. She often tries to give them objects she has sewn or doesn't want anymore, and they are not allowed to accept "gifts". If she is sewing immediately prior to us going out in the car she will insist on completing tasks before leaving, even when there is no need to do so. One of the reasons I am encouraging her to play games on a tablet is to satisfy what seems to me to be a fascination with tapping touch screens on phones or the T Hub.

One of the blocks of foam I bought is to give her greater confidence sitting down on the loo from the Sara Stedy which raises her enough for her to sense there is a long drop between her bottom and the seat. Sitting down on the large block of foam then rising slightly for me to withdraw the block from beneath her bum reduces her stress, as well as balancing any strain between her arms while at the same time prevents me stressing my right hip if I have to transfer her by swinging her bottom from the wheel chair to the toilet seat, by lifting the seat of her pants. Unless we can reduce such physical strain on both of us, we will both end up in care. And I try to keep out of the way of any transfers when Wild Dog ladies are here each morning and evening; a matter of self preservation.

Chapter 416 - A Clayton's Holiday

We have had cousins with us for a few days; their stay extended by several more days because he had an infected elbow following a fall some time ago. He was prepared to wait for matters to heal in time while taking antibiotics prescribed by his doctor at home, but when the elbow began swelling, looking as if it had a boil on it I suggested I take him to emergency at our local hospital, where he was given intra-venous injections of antibiotic, continued twice a day at our place by "Hospital To the Home" nurses at our place. When I took the cousins to the railway at 0530 this morning I told them I felt as if I have been on a holiday myself, experiencing almost a week away from our normal routines and having others to speak to. They would like to see us visit them but I cannot commit to that not simply because of our care arrangements, and not just the matter of having assistance morning and night; more the issues of mobility, transfers and incontinence.

She continues to need the cooling of fans at times during day and night.

Last Monday the hospital physio said there was insufficient movement in her foot yet to apply an orthosis cast, perhaps at the next visit on Tuesday.

Duodopa is still running at 4.8mL/hour. Her leg dyskinesias may have reduced a little. She complains of leg and foot pains, and when in bed her feet seem to "tangle" together, catching in the sheets although they seem normal to me. Her feet are usually at different temperatures, the left colder.

Her upper right arm is very sore so I have applied Voltarin aided by a vibrator.

I must have some breakfast at this early hour while she remains dozing in bed.

Chapter 415 - Outsourcing

I dislike such hideous managerial terms as "outsource" yet at the moment I'm unable to think of a more appropriate term to describe shirking of responsibility. This morning we met a young lady from Wild Dog Care at the coffee shop we visit most Sunday mornings; the young lady wheeled her through KMart and some other places for an hour then returned to the coffee shop where we then had a coffee and a milk shake, although the young lady excused herself for she had 5 minutes to get to her next appointment. I will schedule a shopping expedition for next Sunday at Target. While they were shopping I stocked up on food stuffs from Coles as well as going to the chemist. She apparently enjoyed her short outing, although she didn't buy very much.

She frequently comments about her inability to read fine print, of being unable to thread needles. I intend to take a sample of some print she was unable to read this evening down to our optometrist for comment. Her glaucoma drops are administered every night at 10PM and the lubrication spray as often as I remember during the day. Even so, her eyes are frequently red rimmed.

The Duodopa flow remains at 4.8 ml/hour. I suspect her legs may not be shaking as much the last few days. Again on Wednesday her bowel movements were quite loose, so she has not had Movicol since. However her motions are less frequent now, lots of flatulence, but not yet complaining of doing "marbles" although yesterday I saw evidence of such in her incontinence pants after she complained of "still something there". I am concerned that she is eating less, disinterested in lunch and only takes what I offer (frozen dinners) of an evening. There is little point in cooking conventional meals.

Tomorrow she sees the hospital physio for the first time since the Botox injections in her left leg. We like to think her left foot is a little more pliable and the toes are able to wriggle more. Tomorrow we will see.

And today was our change back to real time, which meant she was able to sleep an hour longer this morning. But tonight, from about 1730 onwards she was tired, worn out, sweating until she felt greasy to the touch. So by 1830 she had a large bowel movement, and while seated on the loo I wiped her body with a flannel wetted with cold water, helped her clean her teeth, then to bed and fitted the overnight incontinence pants. Shortly after the Wild Dog Care lady rang to say she was on her way, arriving on time. Since there was nothing for her to do, I placed a chair at the bedside and left the two of them to have a goodnight chat, and that will be good for her.