Chapter 35 - New Toy

Yesterday morning I had to return a second time to Woollies because they had difficulty finding the $299 DVD recorder they shipped in for me. Once connected into the rat's nest of cabling I discovered that our second working VCR was no longer so; had to borrow the one from the bedroom, and then we spent the afternoon, evening & early morning copying old tapes to DVD. Since this has to be done in real time, she has a chore in front of her and her enthusiasm will wane once she has her favourites, such as her Doris Day collection, copied. She knitted occasionally during the hours. She decided that we will have our main meal in the evenings rather than comply with the social mores of old fogies. I found the day's activities quite satisfying, even having bought the "Australian" as in days of old, to read on Saturdays. Strangely, I had difficulty concentrating on the newspaper articles; difficulty holding the pages, needed extra light to see the fine text. Do you think this is an age problem (no, we don't live in that state anymore) or that one becomes used to reading news on a screen these days? Anyway, $2.20 worth of scrap paper into the re-cycling box this morning. Anyway, she remained awake until about 4am, then had difficulty waking to the alarm for meds at 7am, asked several times later whether she had taken them, then woke me at 10:30am. Church missed today.

Chapter 34 - An Interesting Week

A week fades from memory too quickly so I need to consult the little diary in which I record her notable PD variations on the theme. Starting from where I left off last Saturday morning she showered herself although help was needed to dry her. During the afternoon she completed some of the puzzles in her magazines before a little machine embroidery and again a little in the evening. This is encouraging, although she quickly tires, stiffens, fingers trouble threading the needle. By 10pm she was ready for bed. This is great! But no, within half an hour she was uncomfortable, too awake, a stiff neck. Reading in the back room until 1:30am when back in bed after the loo she quickly fell asleep.

On Sunday I woke her in readiness for church. Showered & dressed herself, maybe I helped with her bra. Rather than shopping immediately after church she decided she needed some rest so home we went until venturing out at 3pm. After the supermarket she readily accepted my suggestion of a visit to the video shop. On the way back up the street she said "I feel as if someone has given me a new lease on life" and promptly suggested we call into the club for coffee. She had an evil looking tart with "Bailey" in its title plus hot chocolate while I indulged in pecan pie & coffee. The new lease did not last for long - sleep failed to come to her until 3am.

In a continuing attempt to break the cycle, I woke her at 8:15 on Monday after which she showered & dressed herself. We then spent an hour or so down at the Cottage. In the evening some sewing (completing the stitching of a bought rose design) as well as little knitting, something pink she began when the cousins were with us. Next morning when asked how well she slept the answer was "I didn't hear the clock chime between 4 and 5."

On Tuesday between 7 & 8am she asked me twice whether she had taken her pills at 7am. Strange? I had her a little late to KYB at 10:15am. She watched DVDs most of the afternoon, I think all of the first series of "Bewitched". I watched a little; hating to admit that some of it was funny, I had to because I laughed. In the evening a very long VOIP chat to her good friend in the duck pond town we came from. She was asleep by 2:30am. And she slept deeply, taking a long time to respond to the alarm at 7am. She made the observation that at sometime during the night she had rolled over, having found herself facing opposite the direction in which she went to bed. This is important to her because her inability to turn automatically during the night seems to be the cause of stiff neck, back pain and general discomfort. I woke her about 9am and after showering she decided to wash clothes which I hung askew on the line. During the afternoon she watched DVDs and prepared some things for our day trip tomorrow. We ate early on pasta & sauce so that we could go to the quilting group at our village hall about the time she was due to take her evening meds. She was able to stitch her squares in short bursts; although "burst"suggests a degree of rapidity and in her case the machine was running full slow. But she was able to progress with the quilt. Asleep by 2:30am, loo on her own at 5am, she needed waking at 8:20am on Thursday morning. Although able to shower & dry herself, help was needed with her nickers. She had some back pain. She was not keen about our picnic drive to a little "town" on a back road to the coast (150 years ago it was the only road into the area). With our friends aboard we headed east a little after 10am; stopped for late morning tea at a bush camping spot on the banks of a river; toilet stop at the small town in the centre of the district before turning northish on bitumen & gravel for our goal - the little town which advertised itself on the web as having a "caravan park with full facilities". Well it did, but unavailable for use, because the owners were unwilling to pay more in public liability insurance than they received in site fees. Expletive. This was to be the quiet place to again test our caravanning legs following a year of going nowhere. After avoiding a side-of-the-road picnic spot populated by one dead kangaroo, we found a property access path opposite the cemetery on the south side of town where we set up table & chairs to comfortably devour the excellent lunch provided by our friends. We returned home in the late afternoon, taking another route, because you know of my dislike of returning the way I came. She had a pleasant day; no complaints about my driving (I never went over 80 & friends were with us). We had no need for an evening meal, almost. She was very surprised at 8pm that she had forgotten to take pills an hour & a half earlier, then having taken them, to have them "kick in" by 9pm, when she ate 3 small blueberry muffins .

So on Friday I decided that perhaps we should join the older generations' habit of having our large meal at lunch time. So I BBQ'd some lamb steaks which we had with stir fried vegetables. Mid-afternoon down the street to buy a wireless dongle for the laptop and a cheap DVD recorder on "special" at Woolies (they had none left). She was keen to visit Millers, the rag shoppe, where she bought a few items. This was the first time in well over a year that she has felt confident enough to roam through racks of clothes. In the evening she had a small bowl of soup and sorted embroidery files on her PC. She was in bed asleep by 1 am; then rose for the loo 2:20, 3, 4 & 6am. At 4am she "was freezing cold" (the night was cloudy & mild) so she had to turn on the room heating. She is sleeping, I need to wake her. I just realised that she has not needed assistance these last few nights for loo visit & I don't know whether she has been needing her shoes. Are we progressing or going in eddies?

Chapter 33 - A Broken Cycle, Perhaps

She sleeps. About 7:45 on Saturday morning. So what? You may say. Well, last night she murmured "I feel sleepy. I might go to bed." at the unbelievable time of 10:30pm! "I'll be there in a little while" I replied as I was looking at the performance of our superannuation investments. She was asleep before 11pm. I lay there reading a good book because she needed to wake sometime about midnight for her last meds. I still had my glasses on when she woke me at 12:45am. "Well, that didn't achieve anything." "What? You've been asleep." I replied half asleep. "Not very much." I didn't argue; she took her meds, went to the loo. At 3:30 she woke me again for the loo. Help is needed for her to get out of bed; to fit her shoes for the short walk. At 7am a short time ago we both woke to the alarm for her first meds of the day. I stayed in bed for half an hour without falling asleep again, so I left for my dungeon while soft snoring came from the other bed.

Last night was the first time in months that she did not fear going to an uncomfortable bed, or rather a sleepless night. Matters became worse last weekend. Perhaps worse on Tuesday night when she was still attempting to sleep with the aid of warm milk with honey, her little red seed filled thermal pillow (heated in the microwave) and a few Panodols around 4am. She was heading toward reversing her night/day sleep cycle. On Tuesday evening we had eaten some extra spicy Dago-type sausages. Those of you who know me are familiar with my need, craving perhaps, for spicy food. My lack of a sense of smell, and therefore a poor taste sense as well. Interestingly, some experts believe that a lack of smell is an early indicator of the presence of PD. Not in our case. Just the opposite. She sniffs clothing to detect whether she has worn it before; I wonder whether I am missing something important in a stinking world. Food intake too close to PD meds upsets the uptake of Sinemet, so we have been separating meals and pills, especially in the evening. And I wondered whether strong spices aggravate the digestion or may even have an effect on brain. So since Wednesday night she has eaten salmon steaks while I finished the sausages. But on Thursday we had bland supermarket pizza we took out beyond the black stump to my genetically remote cousin's place, and the cousin has just returned from a second dose of breast surgery. Also, I decided she must not sleep through the morning. The time on this PC says 8:22am so I must leave to kick her out of bed.

Chapter 32 - A Day To Forget

Saturday began badly around 2am when she came to bed. She was stressed, restless. I don't know how well she slept but by 6am she took her first meds for the day, half an hour earlier than the alarm, which I turned off so as not to wake her if sleep came. She became very thirsty. Said she had been very hot during the night, although the heating was off. She asked me to refill her water bottle. I did so, then a second time; she drank at least 2 litres of water. Then slept. I went to my dungeon. She rose for the loo at 8, 9 and 10. Finally at 11:30am she rose, shaking badly but stiff & rigid at the same time. Lunch meds at 12pm. A shower was delayed until late in the afternoon when she could trust her balance. Incapable all day of any activity other than watching movies on DVD. The rigidity & shaking lasted all afternoon until around 8:15pm "all came good". She commented "This has been a most dreadful day. And I have felt hot all day." So was this PD or perhaps an infection? Midnight meds, sleep about 1am and another day begins somewhere sometime.

This morning we woke at 8am, she not having taken her early morning meds because I had forgotten to switch the alarm on again. Toilet, meds, return to bed. She sleeps soundly. There will be no church for us this Sunday morning.

Chapter 31 - Beginning a New Day

The alarm wakes me at 6:30am. "I've been trying to sit up for the last 15 minutes" she says from her bed. In a stupor I have difficulty disentangling myself into the aisle between our beds. I roll back her doona, pull her legs as a pair over the side of her bed. Her legs balanced in mid-air aid a gentle push on her shoulders to bring her to an upright position; almost, for she grasps the bed pole. I grope on the floor for her soft sloppy brown shoes, the ones she uses to and from the loo. "No, wrong foot" she says as I catch the toes of her left foot in the right shoe. I'm not quite with it, down on the floor, in the dimness. "Pills first or the loo?" I ask. "The loo." She lifts easily using the sling around her back. She stands with feet touching together, no balance, I hold her tightly (like I once did on the way home on Saturday nights when we were young) until she is able to shuffle her feet apart and support herself. Still holding her, she gradually rotates herself so that we can head towards the bathroom. Did you once play trains as a kid, sliding your feet while yelling "Choo-choo"? That is how we proceed, very slowly, beyond the beds and towards the bathroom, without sound effects other than that of her feet sliding on the carpet. I leave her at the doorway "Will you be OK now?" "Yes, I'm alright." as I head to the other side of the house. Through all doors open echo the sounds of tinkling in unison. I return to find her slightly stooped but holding her new fireman's pole high up. More shuffling until she turns towards the door. Back in the bedroom she takes her first medication for the day, washed down with water from her Windows XP water bottle. She shakes off her shoes beside the bed, slowly lifts her right knee onto the bed then topples sideways. I roll the doona back. Into bed myself. I lay there. The clock chimes seven, just as she gives a soft lady-like snore. I collect our CB radios, leave hers on her bedside table and tip-toe out to my dungeon. The day has started.

Chapter 30 - On Holiday

We have been on holiday without leaving our front door. It came about like this. Several weeks ago her 2nd cousin (with whom we have been close since before we were married. He & I had similar careers, each couple had children at about the same time. Been on holidays together. We are good friends, etc, etc.) had problems with new hardware/software in his computer. And last week I wished to attend a 50 year reunion lunch with blokes I started work with up north in the big smoke. So we struck a deal - 2nd cousin comes with the faulty computer and I catch the train north for one day to attend my reunion with a bunch of time-ravaged old sods.

Matters worked out well, although they took some time. The 2nd cousin had had a graphics card fail and that had been replaced by a dual head card plus a video capture card plus software by his local friendly computer shop. Except the software crashed at each capture attempt. After several days in our unheated garage, interspersed with BBQ's and bottles of medication the problem was resolved by repositioning his fancy audio card and reinstalling the audio card software. Meanwhile the ladies sat in the warmth of the house chatting and a little knitting. Once the machine problems were resolved we decided to have a computer-free day or two, but failed, since the 2nd cousin is on a steep learning curve, although we took time out for church and a lunch at the local club then a curry night which included other friends as well. Computer engineering requires much food and drink.

Although none of us could have maintained this life style for much longer, we were very thankful for the break in our captive routine. The 2nd cousin thought he had imposed upon us. Rather, we were released as if we had travelled away. Other offers for live-in computer repairs will be considered on their merits; mainly food & wine.

During the last week or so there were small events that should have been remembered for this blog, but I have forgotten. Some will breath a sigh of relief.

We bought a lifting sling from a disability outlet in the banana state. I call it her "chastity belt". The sling enables me to lift her from a seated position without pulling on her arms or shoulders and without causing twinges in my back. Pain in her arms and shoulders has subsided. Just another thing to keep close at hand with the CB radio and phone.

A local engineering shop sold me a length of stainless steel pipe and flanges to install a fireman's pole within reach of the toilet seat. The pole is between floor and ceiling, centrally positioned in front of the toilet in the main bathroom (her bathroom). By using the pole she does not pull herself off balance as she does when using grab rails mounted on the wall. And I have no need to appear with the chastity belt.

Now to plan another escape.