Chapter 214 - Signs

We refer to sitting on the loo, waiting for a bowel movement as "meditating". Each day she feels the need to "go", sitting on her bidet (I use the other bathroom) for 10 to 15 minutes at a time. I'm not sure how often each day she meditates. Last night she told me that she wasn't constipated and when she does pass something then it's soft. I suggested that perhaps her need to meditate is similar to her need to urinate, a frequency incontinence problem. At least with urinating, there is always something to void but with meditating there is no sense of accomplishment when nothing is passed. Unfortunately, the feeling to void anything stresses her; she fears being unable to contain herself and messing herself, so she needs to respond to a false call of nature then is frustrated that an urgent need cannot be satisfied. When I explained to her my thoughts of tremor-like muscular movements in her pelvic region stimulating voiding feelings she raised the matter of her being unable to raise her hips sufficiently to roll over in bed, even though she has her satin add-on in place over the lower sheet. In thinking about it, rolling over in bed requires me to apply force from my arms & legs while arching my back at the same time; so what seems to be a simple procedure to me must be beyond her co-ordination. So when she is unable rotate her body by pulling/pushing herself by grasping the bed-poles on each side and grasping the monkey bar above her head she then needs to get out of bed & back in again.

I woke early this morning, about 4:30, unable to sleep, the above thoughts going around in my mind, so I left her CB radio beside her pillow & tip-toed out here at 6:00. She just came to the door, time for her first dose of pills, she says she will stay up as well.

On Monday up to the usual club to meet with Ugly Sisters to celebrate a birthday. One said "She seems much worse today." "Why?" "There are a lot more tremors." What can I say? How do I explain that's just the tip of the iceberg? She says that if it was simply tremors then she could easily cope. Anyway, she enjoyed the day, although she later said she had been able to cope because we were with her sisters; any one else a different matter.

We attended a lunch at the village hall on Wednesday to celebrate the national day. We took her collapsible walker so that she was able to sit on it at the table; a little more comfortable for her not to be clamped into position by the heavy chairs.

On Thursday up the country road for a Bowen session. Less aches after this time. We went to the club for lunch before seeing "The King's Speech". So a full day for her and she wasn't very comfortable in the evening.

Friday an hour & a half from our appointment time we left the doctor's. She asked & was given a prescription for Sifrol ER, the slow release version. She hopes this may iron out some of her on/off fluctuations. At least she will only need to take one of these each day; plus her other meds of course. Our chemist has never dispensed Sifrl ER so she needs to wait until after the weekend to use it.

I have suffered sciatic problems in my left hip & leg this past week, due to sitting too long in my office chair in this dungeon. I should have had a Bowen session. Anyway, the pain in my hip when attempting to assist her rise from chairs, getting off the loo, adjusting her clothing, completing tasks for her has been excruciating at times. Makes me realise how vulnerable we are. On Friday I attempted to arrange another ACAT assessment but after 10 minutes on a phone queue I gave up. I will try again on Monday.

Chapter 213 - Exit from a Bad FortnighF

She has been going down hill, impacting both of us emotionally.

Last Monday she was unable to raise herself from the loo & adjust her clothing at least 5 times. That same day I found her her stuck at the doorway into the hall, stooped & grasping the door jamb for support, her CB radio on the handle of her trolley too far to reach. She was coming to ask me something, I can't remember what. Lots of pain in her lower back & right leg.

The next day she was compelled to lay down at 11:30 because she had that shivering, shuddering feeling of, as she calls it, "someone walking over my grave." She needed help to the bed where she slept until 1PM. In mid-afternoon I cancelled our rain check lunch for the following day with our friends from Big Smoke (did I mention that I cancelled with them the previous Wednesday because she was just not functional when it was time to leave for the drive to the club?). That night about 10PM when I was helping her in the bath room she asked that the room light be left off (subdued light enters from the street light outside the window) so that she would not be bothered by the tile pattern on the floor (plain tiles, so it was the square pattern of the grouting that bothered her - I was unaware that the tiles in our bathroom had an impact on her, as does bright contrasting tiles in other places). Lots of pain. Someone asked me on the phone whether all this was due to the PD, how bad were the "shakes"? Others fail to realise that tremors are merely the tip of the iceberg. As she says herself, "If were only the shakes I could tolerate that."

Wednesday turned out to be a "reasonable" day - I took no notes. I think that was the day I became irritable with her while I attempted to set up a new BlueTooth head set for her to use with Skype. She began some embroidery for a quilt for an Ugly Sister. A call from the Bowen lady to set an appointment for next day cheered her.

The 45 minute trip up the country road for the Bowen appointment didn't bother her so much this time and she resisted the desire to sleep on the return trip. The gentle treatment left her feeling as if she had been kicked by a horse all over. On return home she became engrossed in embroidery & the patch work to make a wall hanging for Ugly Sister.

Friday found her very sore. For a very gentle treatment that Bowen lady certainly knows where to touch for maximum effect. She had risen at 6AM and later when I rose she needed the treadmill to gain a little flexibility & ease the pain. Mid morning she was doing her puzzles waiting for meds "kick-in" to enable her to resume quilting. I offered to help her onto the treadmill. Using her trolley, she made the hall doorway then asked for help to sit. "It's too scary" she said as I helped her onto a kitchen chair. She began some more puzzles, then later called me on the CB to ask for help to return to her favourite chair in the back room. She had begun to feel in danger of falling off the kitchen chair. By lunchtime she was moving about again & discovered her small LED torch (she keeps beside her pillow on her bed for when she rises during the night) on the floor near the foot of her bed. I was accused of "borrowing" it but not returning it to it's proper place - I hadn't. Then she wondered whether a prowler had been in the house - no one had of course. I assume she dropped during one of her trips to the loo. In mid-afternoon she called on the CB, unable to rise from her favourite chair, even very difficult with my help. She wanted to use the treadmill but needed to circumnavigate the kitchen table several times first pushing her trolley to limber up. After ten minutes on the treadmill she needed to return to her chair to have some cold water. About 10 minutes later "things were beginning to work" so she rose, went into the sewing room to attack the patchwork project. That evening I heard her call (fortunately I had no music playing). She had been in her sewing room without her CB. On the way to the loo she found the back room in darkness and froze. I helped her there & with necessary adjustment then back to her chair, ringing wet. She asked for cold water & I switched on the A/C. She is frequently in a lather of sweat, even her hands & arms.

Yesterday was average, a few calls for help, some pain & stiffness. She asked for some mentholated gel to be rubbed on her back - I hate touching the stuff - and she often applies it to her legs & lower back. After much frustration she now has the majority of the wall hanging together, needed when we meet with the Ugly Sisters on Monday.

This morning has started well, working on the patchwork project. A little after 11AM I was called to extricate a needle jammed into the dog on her machine. At this point she decided to have a rest from the work because she felt she was in danger of ruining it.

Chapter 212 - Morning has Broken

"What's the time?" she asked from her chair as I unpacked the dishwasher. "Nine thirty." As she shuffled across the room I asked whether she wanted the treadmill. "If I don't have a shower now I'll lose it."

Prior to the above, she had been up before me this morning, doing puzzles in a booklet that we figured out she had been given when she was in hospital in 1995. "Why are you using it?" "I've finished the puzzle magazines." I proceeded to do the minimum Wii exercise I do lately, Hula Hoops, for 11 minutes then I showered & prepared my breakfast (she already had hers). She attempted Hula Hoops, failing as usual, (although yesterday she made 19 rotations in one direction) then began stepping, usually good for her, but after some 300 steps pains in her legs forced her to stop. "Use the Circulation Booster" I said. That eased her leg pains.

As she went into the bathroom, I went to my dungeon to begin this chapter. Within a couple of minutes she called on the CB that she needed help. "I need the shower chair." She had run out of steam. So I positioned the shower chair, helped her off with her nightie, then handed her the shower rose. I waited outside the door until she finished her shower. She called " There is nothing to stand on." I had positioned the shower chair over the plastic mat in the shower area. As I pushed the fabric bath mat closer to her and asked her to stand she pleaded "I can't, the floor is too slippery." Wet non-slip tiles do feel a little slippery. I kicked the bath mat onto the wet area & began to dry her. "I have to get out of here'" so I lead her, dripping, into the bedroom, where she needed a solid object to hang onto. The wardrobe doors were opened so she was able to grip the shelving while I dried her. Then she sat heavily on the bed. As I fumbled opening her incontinence pants I irritably told her I knew what I was doing as she tried to tell me which was the rear, where the label is, as she always does. They need to be threaded over her feet while she is seated before standing so that I can hitch them up. This part of the operation is trickier than could be expected; I have her hold my shoulders while I am seated on my bed while I grasp for her clothing & as I do so, her hips begin to oscillate back & forth at a great rate. Then she sat again. "Which trousers do you want?" I asked as I slid open the wardrobe door . "Out in the laundry." "What's wrong with all of these?" as I waved my hand towards a rack of jeans & things. "They are too tight to get up & down easily." An image of me rescuing her off the toilet seat because of such difficulty came to mind. "A mauve, dark brown pair at the front of the ...." she said trailing off as I went to the laundry. The slacks were threaded over her feet, the she stood as I hitched them up. As we shuffled out to her chair "Could you pull the pants up at the back please? That's better." "Do you want the treadmill now?" "What's the time?" "Ten o'clock." "In about half an hour; I must take my pills." So began this Sunday morning. Mornings are not always like this. Some mornings I go looking for her only to find she has risen, showered, had breakfast & is in her sewing room, all without needing help.

Our days are filled with small incidents I try to remember for recording, but each is usually forgotten in the fog. For instance, a few days ago she CB'd for help in the loo. She had pulled up her incontinence pants but her slacks remained around her ankles and beneath her feet. "I can't lift my feet to pull them up." I help her up, asking her to "climb the fireman's pole" to help her stand straighter rather than stooped. the lift each foot in turn.

We stay in-doors too much. One day she used her walker to come with me to collect the mail.

Another day I wondered whether a stroll around some of the town's junk shops would be good for her. She jumped at the opportunity; first we had a light lunch at the club (she gave me portion of her ham salad wrap) before strolling along the street to a newsagent for her puzzle magazines, then into the place where she buys cards, then a junk shop a little further along. After wandering the length of the shop, without showing much interest in anything, she said "That's enough", so we left by the rear door, back to the truck & home; all in about an hour & a half.

She often asks to use the treadmill while experiencing very sharp pains in back & legs; then after striding on the machine for a few minutes she gets off, with my help, only experiencing a dull ache.

She has had no success making an appointment with our new found Bowen person.

The oscillating column fan is often needed while she is seated in her chair. Only a little exertion causes sweating. Once as she got off the treadmill I noticed that the rear of her hands were wet with sweat and usually her hands only feel damp.

A few days ago at noon she called and I found her grasping the kitchen doorway, asking "Can I use the treadmill? The meds haven't kicked in." After only a short time she had to get off "I didn't have it up very high (speed) and I was scared." That day she wanted only a few dry biscuits for lunch.

I notice her more often slouched forward in her chair, mouth slightly open, hollow cheeked.

At almost 11am she has called me to help her onto the treadmill.

So ends an average morning.

Chapter 211- Starting a New Year Badly

I think it was early last Tuesday morning after taking her midnightish dose of meds that one became stuck in her throat. She thought that it may have been a Deralin tablet. She mustn't have realised the problem had occurred until she woke later in the dark to find a grittiness and soreness in her throat. At daylight when she told me about it she was hardly able to speak. She asked for some throat capsules, Strepsils I think it was that I found in the cupboard. She was croaky with a sore throat for several days.

Then on Thursday her dentist attacked some fillings. The work progressed with little difficulty, only one slight gag so I was told. Afterwards we had a snack at the Club (she had been told that there were no issues with eating straight away) while I waited to see my own doctor who was running late.

All this past week she has frequently called on the CB for assistance rising from her chair, help with her clothing after, sometimes before, going to the loo. She is shuffling badly at times when one foot does not travel beyond the other, although yesterday she walked around to her friend's place, aided by her walker of course.

This afternoon she had to sleep on her bed; her tremors & discomfort were getting the better of her. She tremors kept her awake last night & necessitated numerous trips to the loo. This she blamed on s few sips of bubbly, some brie, stuffed peppers, dry biscuits and chocolates we enjoyed mid-evening to celebrate New Year quietly, but she failed to see midnight, deciding on bed about 2230.

She has not needed the treadmill for days now & she hasn't used the Wii in at least a week. Her pains are nowhere near as severe as they were before the Bowen work, but she needs more treatment; her pain is relative and bearable at the moment.

Now with the warm weather she needs fans blowing on her most of the time. Whenever I assist her I note that her skin is very clammy. Maybe winter will come soon.

Notes very early the next morning. She slept this afternoon. She seems tired & is always hot, damp skin to touch. After we watched "Midsomer Murders" she went to bed. She needed help to go to the bathroom and then to bed. In the bathroom she was unable to pull up her underclothes while stooped, hanging onto the fireman's pole. I ask her to "climb the pole, hand over hand" so that she straightens sufficiently for me to pull up her clothes. While sitting on the side of the bed she remembered that she hadn't dispensed her meds into the various containers; so I went for her walker-trolley and the green bag in which she keeps all her potions. As I raised her right leg in order to topple her onto the bed she said "I'm about ready for the nursing home, but I fear that." So do I; the situation can't be allowed t