Chapter 229 - Dip Sticks

Along to a long appointment with the Sub Continent doctor on Friday because our usual GP is booked solidly until next Wednesday week. Anyway, this one tends to talk & I feel matters can be discussed with him. I have been using the urine testing sticks for several days in the her urine in the commode, but only after I have scalded & dried it to minimise contamination. Since the various testing areas on a stick need to be observed at differing times, 30, 60 & 120 seconds I photograph them with a stopwatch close by with the time & date on a small piece of paper. The reactions continue while the reacting areas remain damp so cannot be kept for later observation. Both the leukocytes & nitrite tabs change colour; the leukocytes very quickly to a dark mauve. Usually the nitrite tab to varying shades of pink. Both suggest infection. As a control I did a test of my own urine which showed no colour changes on any tab - any one may suspect that I'm a healthy young chap.

With a number of prints in hand, a group of 4 shots of a test on a page, we saw the doctor. He seemed puzzled about how I took & printed the rather fuzzy shots. I encouraged him to keep one page of the latest test in her file. He noted that the leukocyte tab began changing colour quickly, quite noticeable at the 30 second point, long before the 2 minute point when that tab is to be recorded. He began talking about a urologist, but first another pathology test and a bout of antibiotics appropriate to e-coli. I was tempted to suggest cutting to the chase straight to a urologist, but I think a urologist may request the same path anyway, so I shut up. It was late in the day by the time we left so the antibiotics are yet to be obtained from the chemist.

The doctor also completed the paper work for her to have a disability pension rather than an aged pension so that I, the carer, will revert to a carer's pension thereby able to receive an additional $600 allowance each year. We heard of this tactic when a CentreLink person spoke at our last PD group meeting. So we discussed it with him in person on Friday & he gave us the paperwork for the application. She thinks the paper work is excessive for the amount of $600. Who cares about the tax payer? The main reason I needed to speak with Centrelink was to find out whether both our Term Allocated and Allocated superannuation pensions will be assessed as assets should either of us end up in care. The answer is "No", only the pension that can be drawn down without penalty. So that means that our assessable assets are reasonably low, thus bonds & fees will be much lower. I knew there must be some good reasons for locking away most of our money & paying fees to financial advisers.

We have discussed her anatomy with regard to more effective washing & wiping. While using the commode she is too constricted with space (arm rests) to use paper to dry herself after urinating and she is too unstable to hang onto objects with her left hand & wipe with the right after rising from the commode. So that is out for her get-ups during the small hours. I have repeatedly asked her about the "feminine hygiene" setting on the bidet which she does not use because "the stream does not seem to go to the right place". I suggested spreading her cheeks a bit. Can't do that very much she says. Anyway, this morning she discovered that by grabbing the fireman's pole (the stainless steel pole I installed from floor to ceiling in front of the toilet some years ago) and partly raising her self, the bidet water stream enters the appropriate area, then she can lower herself to be blown dry by warm air. I am so glad that I am not built like a woman, but then of course, I have my own problems. She is changing her incontinent pants at least twice a day to minimise the effect of that lovely warm possibly dampish breading ground for bacteria.

Must go to see whether she is up to having a shower. Half an hour ago she was, got side tracked getting clothes ready, showering became an impossibility, had a short walk on the treadmill and sat down in front of the TV.

Chapter 228 - Thinking Positively for a Change

Four times between 2430 and 0130 last night she told me this morning - that's each 20 minutes. Using the commode in the bedroom is now the accepted procedure, no longer a slight embarrassment. One or other of us empties it each morning, just routine. Some days ago she had an overnight dose of diarrhea and she was very pleased to be able to use her bidet on the toilet. So was I. I spoke to our chemist about those testing sticks often used by doctors & nurses for quick tests of urine. A packet of 50 was ordered for me. They are yet to be used because each morning I forget to scald the commode pot before taking an early morning sample. We realise that the testing sticks may not be as sensitive as a culture preparation at pathology but we will gain some reassurance. Wednesday a week ago we went to Southern Highlands Town to do some shopping; left at 10000, returned home at 1600 and had some junk food for lunch - in all about 3 hours driving, walking around a department store and lunch WITHOUT requiring a loo!! Yet like last night, 20 minute intervals at other times! I think it a cunning bacteria that behaves like this. She continues taking cranberry pills & yoghurts.

We went to that department store because she had seen advertised on TV some "side sleeper" pillows that seemed to be an expensive ripoff for about $60 plus postage. I found what seemed to be the same thing advertised on-line from the other side of the Pond for about $20. The pillow in question has the shape of a sea horse and has a hole into which one's ear is placed. Anyway, we found several standard looking pillow for side & tummy positions for about $16 (bought one of each & I'm using the tummy one) then discovered boxes containing the TV advertised model, $60 of course. So it went into the trolley as well.

Although she continues to use the funny side sleeper pillow I am unsure whether it has been of much benefit to her. Time will tell, as it does with so many of the experiments we try. Her first difficulty with the side sleeper pillow was that her feet gradually moved sideways to protrude over the edge of the bed. She blamed that on her satin draw sheet but I pointed out that she tends to move her lower back away from the pillow (it curves down the back), resulting in her body rotating diagonally across the bed (interrupted here when called on the CB to do up her bra strap but she refused to be playful ;-( to cause her feet to stick out. Just as when years ago when I became amorous ..... She pretends to not understand me, although our cleaning lady (more a girl in her mid-forties) thought my comments quite funny.

I am not pestering her to use the treadmill, although like this morning, she asked to use it as soon as the rose about 0830, half an hour before her meds time. She asks because I must be close at hand for safety. I only wish there was some quantitative method of measuring pain. How does a sufferer know that conditions are becoming better or simply a matter of acclimatisation? When asked this morning she was only able to say "I think so" that her pain was lessening. She seems to be mentioning leg pain less, although she often yelps when a cramp spasms down her lower legs. This happened at the shopping centre yesterday, and I can imagine such suddenness & sharpness causing stumbles & falls.

She asked why we bought the "Circulation Booster" (a TENS machine for both feet) some months ago. We can only guess that for relief of pain. Not sure. Perhaps I noted the reason in this blog. Anyway, she has taken to using it immediately prior to getting into bed each night. At first she complained that the stimulation was not happening. I remembered the directions that said the feet should be rubbed with a moisturising cream prior to using the machine. So each night now I gently rub some cream into her feet. This in the long term will have a benefit on the dry, cracking skin around her heals.

Last Wednesday back to Southern Highlands Town for lunch with one Ugly Sister & Co (a loo visit before leaving the club). The monthly local PD Group meeting the Thursday before. Occasional shopping. A string of appointments this coming week.

She is in the middle of constructing another quilt. In the design some triangles/squares suggest ribbands interleaving and I was surprised that she was unable to see where she had misplaced some of the pieces, destroying the effect. This happened several times before all the pieces were stitched together. I on-line ordered the four volumes of "Letters & Numbers" for her, the books from her favourite TV show. She is quite competent with the puzzles, although at the moment she prefers the word exercises. I read yesterday that a researcher is suggesting that dopamine replacement therapy (read levadopa/Sinemet) impacts one portion of the brain to reduce movement problems but also overloads a closely related part of the brain where cognitive problems are the result.

We need clouds sometimes to see that the sun shines.

Chapter 227 - What You Don't See

No, none of you see her as she is in those early dark hours of the morning. Not even those who know her personally. When the pain in her legs prevents her walking to the loo, and this morning, not even to the commode at the end of her bed. I had to bring it the 2 metres closer between our beds, help her pull down her pants as I helped her rise & pivot onto the seat - "I hope I'm in the right place" she said as she sat. She frequently sobs as I get her back into bed.

Somewhen around 5am she decided she would sit on the side of the bed, rather than lay down or go out to her favourite chair in front of the TV. She needed a pillow beneath her feet because that minimises the tremors in her legs - I wonder why? Although she initially didn't want it, I brought the circulation booster (the TENS machine for feet). The stimulation to her legs was only slight, so I applied Sorbalene cream to her feet, even though she says the foot pads on the machine become messy. After applying the cream to her feet the stimulation extended the entire lengths of her legs. I noticed that her heels were very dry & rough, so the cream may help with that as well.

She never moves around the house without her mobile trolley, loaded up with pill containers, bottle of water, Ice Gel tube for pain relief, sheet of Panadol, odd pairs of glasses, her watch plus odds & ends. And of course, her CB radio hanging by its pink strap from one of the trolley handles. I can only wonder why more people with problems like hers fail to consider using CB radios; I recently read in an on-line group someone recommending a whistle for the sufferer to attract the attention of a carer. Our CBs have helped me rescue her from many difficult stressful situations. Of course, bemused friends lacking disabilities simply cannot comprehend why we both go everywhere with a CB radio.

As she shuffled around the house the other day, not lifting her feet from the floor, the image of the woman in "Awakenings" shuffling across the black & white tiled floor came to mind. As I have said before, she may shuffle to the treadmill but usually is able to walk away from it after 5 minutes of exercise. What bugs me is why neither of us are able to motivate ourselves to use it regularly during the day. Early in the week for a day or two I set the kitchen timer for an hour & on the alarm I would help her onto the treadmill; without the alarm, neither of us think of the treadmill except when matters become dire & then it can be too late with too much pain.

I have noticed when holing her hands or arms while helping her walk or position her to be seated, the tendons in her arms are like fencing wire, even when the is no need for her arms to be tense. When grasping hands she sometimes causes me pain even though there is no need for her to grip with such force.

During the week she made some loose jackets & ponchos from some sort of blanket material because she wanted some loose clothing to be able to throw on easily. At least 5 years ago she bought a tablecloth with that sort of fret work pattern cut into it and a set of "Christmas Carol" designs to stitch onto it but she has never begun the stitching; I suspect she fears ruining the table cloth. I often times try to "bully" her into beginning the stitching. A couple of days ago she ordered 3 plain table cloths to stitch the designs, just a rectangle of plain fabric, about $20, so it won't matter should something go wrong. I feel I must encourage her to continue to stitch & sew as long as possible; I fear what is happening to the lower half of her body may progress to the upper. Fortunately she has always found pleasure in sewing activities.

She frequently declares she must remain independent. Part of that is the washing, to which I don't object, although I hang clothes on the line. She sits on a chair at the end of the laundry loading & unloading the machine.

I just went in to check on her. Found her walking about, quite briskly for her, putting away clean sheets & the like, that she had just folded, into the linen press. "Any pain?" I queried. "Just a little down the fronts of my legs" replied as she bent to rub her shins, CB radio swing on its pink strap from her hand.

Has she still a UTI? I don't know. She says she hasn't. Her trips to the loo are just as frequent as always. On the chart I made on which she records her On & Off times I want her her mark her trips to the loo to verify her idea that the urgency occurs as her meds cycle on & off. We are out of the fancy yoghurts (recommended by our daughter to protect against UTI) so down the street this afternoon to shop. We will see if we can buy some test strips to test for UTI. When she was in hospital following the melanoma removal a nurse on night shift complained when a bed pan was requested frequently that she had a UTI & was surprised that a test strip failed to indicate such. If nursing staff can use such things so can we, rather than a visit to the doctor, a referral to the testing lab & a return visit to the doctor, antibiotics & pesaries. The latter, both types prescribed, she stopped using because they caused itching.