Chapter 471 - Just Wear and Tear

I just put her to bed at 1PM after taking her to the loo for a big poop, an event that almost calls for celebration. she was hot, needing the wall mounted fan on, her face is flushed. The Wild Dog carer arrived for physio activities but she was unable to do standing exercises at the frame; I was told her legs were shaking too much to stand. I like to think this is caused by her overnight dose of Duodopa being increased to 3.4 ml/hr as directed by the neuro, but I doubt it, although her symptoms seem to worsen during the week following an increase. Living with this 24x7 I am not clear in my own mind whether there has been improvement in the long term or not. I am sure that her right foot is going the way of the left. A few weeks ago she found wearing shoes to bed helped her feet not "tangle" and whatever other sensations come from her feet, so we bought a pair of soft slippers for the purpose; within a few nights the slippers were easily kicked off and are no longer asked for.

After 25th September I began forgetting to attach the FitBit to her right leg, then when I next tried I was unable to to get it to sync to the account. A few days ago I had it working again and from a quick glance at the charts there seems to be little change over time, suggesting her leg dyskynesia is independent of overnight medication changes made each fortnight.

Had I mentioned her glaucoma related eye pressures had returned to 24/26? On 20th September the specialist wrote a script to be mailed to us to replace AZOPT with Simbrinza. The post mark on the envelope indicated 26/9 and it arrived on 29/9, only 9 days to travel 80 kms; signs of a poorly managed office. A few days after the 20th I rang and was given "It's in the post" message, then later I asked for the script to be FAX'd to the chemist and that arrived the day before the mailed script.

Her craft activities are in more of a turmoil than ever; I suspect the Wild Dog carers have lost hope of helping her to complete quilts or knitting. Each Wednesday and Saturday they assist her for 5 hours between 0930 and 1430 while I go to one of the clubs to read or talk. Her sewing room has piles of material and stuff on the floor and tables, the chest of drawers is empty, the 4 high stack of cubes we bought is not being used to store stuff, several times I have returned home to find her conventional sewing machine "not working", there is a pile of new clothes that have been "modified" but not finished; long arms on blouses shortened but not hemmed, elastic bottoms on slacks cut of but not hemmed. In the case of the latter she chopped the fabric to pieces to retrieve the elastic even though I said buying new elastic was cheap and not time consuming. And the mess left on the floor after retrieving the elastic prompted us to buy a battery powered hand held vacuum cleaner for her to clean up the threads and tatters before they spread through the house on feet and wheel chair wheels. Also several pairs of shoes have had their worn velcro straps removed to be replaced by elastic strips; a job in hand.

Cleaning continues to be a time consuming task, a tooth brush scrubbing the timber floor in front of the sink and dishwasher; similarly around her toilet bowl. I often find her leaning forward out of her wheel chair at such tasks without the brakes on; one of these days a fall head first onto the floor. Yet to be used is a hand held steam cleaner for glass and tiles but I think I will be the one to use that.

Bowel actions continue to be a problem. Although I imagine all bulking products are much the same, she has found Benefiber the easiest to take in fruit juice each morning; 3 very much heaped tea spoons of the stuff don't exactly work wonders and she continues to have frustrating efforts on the loo. At times I have given her a repeat dose in late afternoon.

Part of my Wednesday respite is grocery shopping, much quicker and easier that pushing the wheel chair with a special trolley attached. So Sundays have become a religious event traipsing around KMart, Target and Bunnings plus other junk shops. Of course, there is the obligatory craft magazine to buy with a coffee shop visit to follow that may or may not include a lunch.

At the monthly Carers Group I now attend each month there was discussion about respite and "up to 63 days each year" she could be entitled to with her Level 4 package. So last Friday I decided  to research the matter to see what I needed to do (over and above convincing her to take a holiday at an "institution" or a "home", all such being non PC words. A helpful young  (she sounded so) told me by phone from Aged Care that she needs re-assessing to gain the extra level of care so I was questioned for about half an hour, then told that the assessment looked good and that I would be contacted. And so I was told, this morning, Monday, that re-assessing was not needed since she was already approved for 63 days of respite and all we needed to do was negotiate with an establishment for a placement. Now comes the hard part.

Chapter 470 - A One Tracking Mind

As I told my Shrink yesterday, when these situations occur, I try to just walk away, leave her be, go about my own activities. Just now I have left her on the toilet. She says "There is a lump there, I can feel it! If you had a mirror you could see it!!" Instead, I don a rubber glove, wipe her with a bundle of paper, only a slight stain is on the paper; she is not shitting, there is nothing in the bowl. I leave her CB radio with her, walk away saying "Call me when you finish." So I come out here to write this depressing blurb, knowing that once I write a few paragraphs I will feel better.

Today began laying awake in the dark wondering when 0600 will come, confusion in my mind about rising an hour earlier or later at the entrance to this idiotic season of daylight saving. So I feel weary. The carer from Wild Dog arrived at the correct time, that is, an hour earlier than yesterday morning. I prepared breakfast her as usual by 0815 but she became distracted by frayed velcro on her shoe (she has already removed a piece on another pair) so I gave her the scissors she demanded to trim the threads and by 1000 she had decided to hand stitch press studs onto where the velcro was. She must have begun to realise the futility of this because I was able to dissuade her and to have some breakfast, especially the fruit juice containing the Benefibre, which she did, but that thought must have triggered the idea she needed to shit. Cleaning her teeth first, then onto the loo, and here is where I began writing. Now at 1100, I have her in the car, without having pooped, to go "shopping".

Now at 1800, I have been reading, snoozing while she has been attempting, among other things, to re-register to a rag shop site I registered her to yesterday, but today she had forgotten the password and the site was protesting that she was already registered. Then she is unhappy that a site that advertised a free knitting pattern in one of the $9.95 magazines we buy each Sunday hasn't responded and she wishes to write to them to complain. Woe is me! Although she has had her own PC's since 1996 coping with the material she finds on line is forever becoming more difficult.

Recently I made enquiries about a respite cottage in Hot Air City, the reply was as I expected for someone wheel chair bound, incontinent, PD with a Duodopa pump; she is considered "high care" so beyond the capabilities of the cottage in question. The next meeting of the local care group will discuss "Respite"; I look forward to it.

After sitting through two CentreLink presentations about the logistics of a person entering Residential Aged Care and learning that our superannuation managers will provide a one hour tele-conference on the subject for $500, I contacted CentreLink and we went together to discuss the matter with a member of staff. I have begun the paper work to be assessed for one of us to enter Residential Care, as a "dummy run" (no costs involved) just to see how matters work out. There seems no other way to plan for such a transition and to convey the concept of the process to those who may need to make decisions on our behalf. And that's in the foreseeable future; after all, one of us is 77 and the other almost 75.

During the 1 1/2 hours we were at CentreLink, she began to pick at the label on the neckline of the cardigan she had worn and had removed once in the building; soon there was a handful of fine white threads. In noticing this, I asked her what she was doing; "It tickles the back of my neck" she said and continued attacking the label; the person we were speaking to produced a pair of scissors, the label was snipped off and we continued to talk about financial matters. A small matter attracts her attention and she seems unable to drag her mind away to concentrate on a higher priority item.

Returning to our shopping today; firstly to KMart as usual where we bought 3 pairs of casual for her, one pair the same with a velcro strap across the arch as she has been wearing and 2 pairs with  elastic straps across the arch, plus some nighties and slacks, then to the newsagents for a couple of craft magazines then for lunch at the coffee shop across the aisle. Then home for a rest; several attempts to poo and successful just before the Wild Dog carer arrived. She has now chopped the arms from the nighties and elastic cuffs from the slacks; she intends to hem the ends.

There was an appointment this week for her to see the geriatrician again; she was quite negative about seeing him again, so I rang and cancelled. I don't think he is able to advise anything additional for her welfare. Visiting our GP a few days ago we learned that his last report summarised as "maintain her existing management". There is no need to unnecessarily cause her stress.

My respite periods on Wednesdays and Saturdays have been extended to 0930 - 1430 and for about 6 months my Carer friends at Hot Air City are funding the Wednesdays. At the moment, the additional hours make for more relaxing days and since I now use about 1/2 hour for supermarket shopping on Wednesdays, our Sunday shopping adventures are more much less stressful.