Chapter 64 - Drifting

Following her last KYB meeting for the year last Tuesday, we made another visit to the hot air city; again so soon, a bad habit. This time because she found that her successful embroidery of some towels the previous week was hampered by the difficulty of moving her chair between her PC and her embroidery machine. There was only a hard plastic mat (rather badly cracked) in front of the desk, so rolling the chair off that onto carpet was hard for her. She had found that she was able to cope with threading the machine from a single spool stand rather than from the larger, multi-spooled device above the machine. That is, she was able to remain seated. Wishing to encourage her, I decided we needed two new mats, one at the PC and the other at the embroidery machine. This time we bought more expensive mats, (with a few other necessities, $300 worth) hopefully they won't crack too soon, and they overlap slightly in the middle of the room, giving her a reliable raceway from one side of the room to the other. Not that she races. Since then she has composed a design and has stitched it out onto several stock linen doily things. Hooped in the large Giga-hoop we have had for a long time but never used. She figured out how to edit and layout the design without my help. Most encouraging. Although this activity does aggravate the pain she currently has in her arms.

Most mornings she needs help drying and dressing after showering. Most afternoons she sleeps for an hour or so. Not today; she is asleep in her chair as I type in the evening. Yesterday we had planned to attend a friend's 60th birthday party in the steel city; we didn't go; she had disturbed sleep until around 4am and she was not keen to socialise at a party. We have made plans to visit the friends on the weekend after next.

A few nights ago the king of the free world (diminishing tenure thank goodness) was on a news clip extolling the freedom and democracy he has to give to the peoples of the world. Such clips are shown simply to irritate me. I yelled at the TV "And you are a dick-head!"; I don't remember ever having caused her to laugh so much. I was astonished. Am I so funny?

During the week she read an article in a PD newsletter that meds should be taken two hours before or one hour after meals. So now we have our main meal in the middle of the day and so far she seems to forget about breakfast and in the evening we nibble something. So our timetable is something like this:

0600 1 x Modopar Rapid
0700 shower, but maybe later
0900 1 x Sinemet CR, 1 x Inderal
1000 maybe a nibble for breakfast?
1200 main meal as lunch
1400 1 x Sinemet CR, 1 x Inderal
1900 1 x Sinemet CR, 1 x Inderal
2000 maybe a nibble for dinner?
2200 1x Deralin
2400 1 x Sinemet CR, 1 x Inderal

Should be both keep this up we may both lose weight if we avoid the nibbles. I find my appetite wains when I have to prepare food around 1130. Today a couple of snags with vegetables. My gut churns at the thought. Lunch at a restaurant never bothers me though. She wondered whether we should stock up with frozen dinners. We are definitely becoming a couple of old farts. Do you remember the movie version of "Iris", John Bayley's book? (A biography of his wife Iris Murdoch.) Well, we don't yet have tinned food cans laying about but maybe we are trending that way.

Chapter 63 - A Busy Period Ends

This past weekend saw the end of several weeks of activity. On Wednesday life long friends (and rellies) arrived in town in their caravan so we both enjoyed long chats, some hilarity and for a few of us, the odd bottle of red. On Thursday we took them to the hot air city where we bought some timber off-cuts for our son who is a "woody" hobbyist. Usually we drive to & from that town as quickly as we can, but this time we dawdled and enjoyed ourselves. Friday was a disaster - after taking her 6am meds then needing some help drying & dressing following a shower, she returned to bed, where she slept until 10:30am, both of us forgetting her 9am meds. I had to cancel our planned morning tea visit with our friends to the new bakery at the other end of our town. Off & on during the week she found sufficient energy and motivation to embroider towels for a new member in the family of our son's in-laws. I can't remember the last time she did some stitching; at least many months ago. Help was needed with threading and hooping, as she tended to be chair bound in front of her machine.

Once again the clan gathered for an early Xmas celebration in our village hall. This year she decided to hand out presents to the kids in those green environmentally-friendly shopping bags, although there was some ripping of conventional wrappings. Yet I am saddened that she is unable to fully play the part of grandmother.

No church on Sunday. Neither of us suggested going; we simply dawdled into the morning. She had been given some clothes as a present; too small for someone that needs looseness for ease of in & out of so down town in the afternoon to seek an exchange at her clothes store of choice, but no such luck, the place was shut.

Surprise! At 8:10am I just checked on her to discover that she had showered, dried, dressed,and breakfasted in front of the telly. A start to a good day perhaps, except she asked me to take the dirty clothes basket out to the laundry, and that means later I will need to mannishly hang (ie. not in an approved manner) the stuff on the line.

Chapter 62 - Scary

"That was scary last night" she said in reply to my comment that she was walking well this morning. She had showered and dressed herself about an hour after taking her early morning start-of-the-day Modopar Rapid. But she decided to crawl back into bed for awhile.

It began yesterday morning with her having a blood test at the pathology place. The vein in her left arm had to be used, the vein also used for dye injection for the CT scan last week. The result was bruising and a lump where I imagine there has been some leakage. Then in the afternoon she began preparations for an embroidery project (this will be her first effort in many months). She called me on the CB - anywhere she moved in her sewing room forced her into a corner where she became "stuck". By the time I cleared the room of unnecessary boxes, put things away and generally cleared the place she was beyond being able to commence the embroidery. Another day, except the task is to be completed by Saturday. In the evening she typed her KYB lesson.

At one point she needed me but I had left my CB behind. I found her standing twisted, holding onto a shelf of the wardrobe in the sewing room. She was stiff, afraid to move. Afraid.

She needed more help than usual rising from her chair. Several times I needed to lead her towards the bathroom. She needed to grasp the doorways as she passed through.

Then, just before midnight, she attempted to undress in the bedroom. Couldn't do so, because she needed to hang on with both hands to the wardrobe shelf (she finds them useful supports). She was afraid of falling. Her stiffened arms made removing her clothes very difficult, especially when her hands kept grabbing the shelf. Similar problems attempting to dress her in her pajamas. This is the first time I have needed to undress her, except occasionally a bra clip (you know those little wire things at the back). She behaved as though she was on the edge of a tall building, afraid of the height and needing to hold on from fear of falling. Reminded me of the episode of Mr Bean on the high diving board, although here it wasn't funny. Later, around 2am while I slept, she was wide awake, unable to lay still, needing to turn from side to side and doing that easily, which is never the case normally. That lasted about an hour.

At 8:45am she poked her head into my dungeon, bright eyed and chirpy.

Where are we coming from, going to? Yesterday evening she was obviously under-medicated, in the middle of the night obviously over-medicated. I suspect these extremes are moving closer together. Expletive deleted.

Chapter 61 - Why Do They Ask?

Why do they ask how she is today? When I cannot answer with words that would convey her feelings, her frustration, her pain in any meaningful sense? Last night for instance - I found her sitting on the side of her bed, sobbing, unable to pull-up her pajama pants. How can I explain that? Or this morning as her tremors increased as we sat in the church pew, to the point when we stood about to enter the aisle for communion she shook her head and we sat down again. "You go" she said, but I would not go, leaving her behind. Later, as the final stragglers shuffled to the front of the church, I queried whether she was willing to attempt going now that there was no queue in which to stand stationary. "No, I can't. I will have to turn around to leave the altar rail. I don't trust my balance". And no one noticed our non-participation.

After church she dozed in her chair at home, then decided she needed to lay down. "Wake me for my 2 o'clock pills". I did so; she took her meds after I brought them in, then decided she needed more sleep. I will wake her at 4.

Last Thursday following our PD group meeting we celebrated our 43rd wedding anniversary with lunch at the club. She had a roast, then wanted a "Baileys Tart" (containing the good drop) which was unavailable so I ordered an "Ultimate Tart", and I even had the waitress laughing at my tasteless wisecracks.

Yesterday while I was out for a couple of hours with our village photographic group she assembled an embroidery design to be applied to some towels. Yet to be stitched before next weekend. We are pleased she succeeded. I suspect the mental effort caused her problems today.

But how can I answer those questions? Perhaps they are simply "How is the weather today?" questions, not really needing a meaningful response. Fortunately, blogging is therapeutic.

An hour now until I wake her.

Chapter 60 - Some Irregularities

Saturday day before yesterday. "I fell" she said as she appeared at my dungeon door. She had stumbled backwards into the blanket box (in which she keeps shoes) at the end of her bed, coming down on her right knee again and bouncing her head against the corner of the mattress on my bed. No serious damage done, although her knee has been tender since, mostly when climbing into bed. Later the same day she almost lost her balance again but fortunately I was able to support her. The blanket box is now positioned against some spare wall near the front door. She needs space to manouver.

She enjoyed the theatre BYO "restaurant" we, with friends, drove to in an outlying town Saturday evening. A rollicking comic musical about transportation to this country. Very congested tables & seating that she coped with quite well.

Yesterday north to be at a granddaughter's 10th birthday party. A grandmother who has difficulty fulfilling her role for seven grandchildren saddens me. That, to my mind, is the most hurtful aspect of this disease. A woman unable by circumstances to fulfill herself as completely as she needs to for the next generation.

This morning she needed help drying & dressing after her shower. Latterly she has required little help. I served her a bowl of breakfast cereal at her chair. She just came to the door "I'm going to lay down for awhile. I can't control the shaking this morning. It's different - a "fine" tremor, something like [PD friend] has." In bed she replies "9am for my next pills" when I ask what time to wake her.

I shut door behind me.

Chapter 59 - A Trip & Some Scans

Yesterday we drove to the coastal city where her favourite doll has been waiting about 2 years for collection. The doll had been given to a lady for repairs that were completed long ago but we had been unable to meet to collect & pay. We had little difficulty finding the place; the slight difficulty at the conclusion of the trip emphasised my need for GPS navigation. She intends to dress the doll, called "Savannah", which is quite tall, in red velvet. I must gently keep her to her word. The repair lady, who makes dolls for a living, owns an old house overflowing with doll carcases, moulds and dressed specimens, gave her a miniature named "Patricia" to be dressed in lace. The fine work will be a challenge for her fingers.

Then we continued a few km's further up the coast to our friends' place where we enjoyed a BBQ, some home brew & the like before returning home on a dark rainy night. The day must have wearied her because this morning she went back to bed about 11am but was soon wakened by our ISP's contractors on the roof pointing our antenna at another tower.

Her appointment for the CAT scan at the hospital was at 2pm, just when her meds were due. She had to take 3 doses of yellow sludge before the scan and with the associated dye injection she would have returned the PD meds very quickly she was told. In a cubicle the size of a broom cupboard I had to assist her to change into a navy coloured paper hospital gown, and later, into her clothes. After her meds we drove down town for her she chest Xray. She was very tired by the time we returned home; fell asleep in her chair. Later I returned for the results of the scans. Thankfully there were no signs of any nasties. A relief. Also, we were not charged a cent for the procedures, another reason to have one of those mauve credit-card-sized pieces of plastic. The CAT scan report stated that her gall bladder was OK - most surprising since it was removed about 20 something years ago. I once heard that the bile duct acts as a reservoir after such an operation.

Chapter 58 - Bits & Pieces

The following was written last Wednesday morning

I was awake long before her alarm sounded at 6am. She took her soluble meds then I showered. A quick breakfast then frustration when I found my network connection was down again, and obviously 100Mb short of a large download I had begun late last night. Nothing to do, so typing these notes.

A 15 minute visit to the GP yesterday added $79 to our Visa account! And she only needed a couple of prescriptions and referrals for scans & a blood test. He did note however that her blood pressure was high at 160/90, much as it was the last time he saw her. Even though she is unhappy about me doing it, I must begin to regularly check her readings at home. In the past she has never suffered from "white coat" syndrome. She may not realise that high blood pressure is often symptomatic of kidney problems. And she has always been proud of her usually low readings of about 130/70 when compared to mine. The scans are to check that all is quiet following the removal of part of her right kidney almost two years ago.

A pleasure to see her sewing quilt blocks at our hall Wednesday night a week ago. Her window of opportunity was short, perhaps an hour after her 7pm meds kicked-in around 8pm. She has done no sewing since; perhaps Wednesday next week will see her try again. Today we drive to the coastal city where her ceramic doll has been waiting for two years after repairs. I am hoping she may be able to dress the doll.

Pains in her upper left arm and her right wrist cause her a fair amount of discomfort. Our Bowen lady was ill herself before we went caravanning and we have not had contact with her since our return; perhaps an appointment there may help the pains, although I suspect they are due to stress holding the bed poles when hauling her body around on the bed. Her toe nails are in need of podiatrist attention again. And she frequently complains of poor vision so a check-up is needed there as well.

Yesterday afternoon we had to collect the sachets of stuff for her to swallow before the scans on Friday. So we also walked around the block to rob the bank of a few dollars. As we returned to the truck I talked her into having a fruit juice concoction at a fruit shop/cafe. She was unhappy about entering the shop; she disliked the clutter of light weight aluminium chairs inside and was only happy to stop when she realised she could sit at a table outside. At home last night I grilled some sausages on our BBQ (now plumbed into the town gas supply) so we sat outside at the small patio table and chairs we inherited from our departed neighbours. She quite enjoyed eating there and then doing her puzzle magazines until dark when she discovered that she was unable to rise because the table was in front of her. Confined spaces are troubling her more these days; such as squeezing along the side of the truck when in the garage (she dislikes getting in or out of the vehicle while it is parked on the slight slope of our driveway). Doorways and corners cause her to freeze more often these days. She often talks to her feet demanding that they "connect" before being able to move forward.

Her second alarm clock has now woken her at 7am to shower. And my network connection remains down so I will post this later.