Chapter 480 - Why Can't I Have a Holiday Too?

"Why can't I have a holiday too?" she has queried several times when the idea of respite was broached. I began to realise that she needs a change of routine as well as I do; weekly shopping trips, having someone attend to her each morning and evening, rare phone calls, watching little TV, DVDs and streamed material, inability to sew or read anymore (well, very little), rare visitors must be boring for her in the long term. Yes, I saw that she does need a change of scene. However I was unable to figure out how to go about it; mobile shower/commode chair, lifter/transporter, adjustable hospital bed; until I discovered that disability equipment suppliers rented such items for short terms, say a week. Finding on-line several such places in a town about 4 hours away I booked an "accessibility" room in a motel for a week then obtained quotes for rental equipment. There are two problems; availability of the equipment when we need it and whether a hospital bed can be fitted into the lifts of the multi-storied motel. At a pinch I think we can manage without the bed or find another motel but the one booked is at the bottom end of the shopping centre so handling in and out of the car can be reduced. This morning as I was getting her ready to get out of bed she became upset that our holiday will not work out; she was fearful of being away from her familiar surroundings and routines.

On Thursday 11th January she saw our GP who said the carotid artery scans were clear. A trainee at the doctor's room asked whether we were willing to discuss our medical care with her, we did so then the trainee visited us at home the next day. She came with a boxed bunch of daisies for my PWP who seemed not to realise that the flowers were a considerate gift for her, largely ignoring them. I made a point of thanking the trainee.

This past week she has had an afternoon nap every day. Most evenings in bed from 8PM she has watched a movie, causing her restlessness and inability to sleep until late.

Yesterday, Saturday, her appointment to see a cardiologist over at the new medical centre happened at long last. Following some discussion of her medical history and the suspected TIA that occurred before Xmas, she was given an ultrasound scan of her heart (I was not in the very small lab room to see and she is fuzzy about what was done) then had a Holter monitor attached that I need to remove at 11AM today then return it tomorrow.

The handling of the Holter monitor was part of her upset this morning. She seemed unable to understand why the connections had to remain connected to her chest since she had been told not to have a shower this morning while the attachments were connected. The intention was for the carer from Wild Dog to give her a sponging while she was seated in her commode shower chair. She was concerned that her nether regions needed washing (I can understand that after spending the night in incontinence bloomer) so we compromised with sponging on the upper half and the shower rose sprayed from below onto her bottom.

Chapter 479 - Mind Numbing Activities

Two mornings she spent sorting the bundle of keys hanging on hooks beneath a small shelf on the wall. Initially sorting keys into groups, taking them off small spring circles, wondering about the use of each key, generally mixing the 16 year collection. Several belong to the caravan we sold several years ago. Keys for safes I relocated to a "safer" place. On the second morning she became obsessed with finding a duplicate to our letter box up in the village hall; I have one with my car and house keys. Later that day  her carer (a Wednesday when I "respite" for 5 hours) wheeled her to the letter box where a suspect the letter box duplicate key did not fit; I wonder what that key was for; perhaps the battery compartment on the caravan? Some 4-5 hours passed with this activity.

She frequently re-sorts our collection of CD's and DVD's; not into any particular order but frequently returns naked disks to their cases. One day she needed to locate the LSVT "homework" disk bought prior to her beginning that expensive PD exercise training several years ago. On the second morning of that search I dug through my collection of embroidery tutorials and found the disk in question, even finding the written report given at the end of the training justifying why she showed very little improvement (not really the fault of the training, just that she was accepted too late in her PD life to benefit from it). When I showed her the disk, she realised that was not what she had been looking for but rather a DVD set of Ti Chi exercises conducted against a backdrop of trees. Not finding that either, she looked on line, finding what she thought was it and when I said we will buy it she lost interest. I thought probably because the instructor and students were all seen standing which of course she is unable to do.

Rose stems are trimmed once blooms fade in vases and I am asked to plant the sticks in the hope of growing new roses. These sticks are regularly watered but quickly turn brown. I expect this activity to begin again when our few roses bloom again in the autumn.

The cleaning chemicals in the cupboard beneath the kitchen sink are frequently re-sorted. As are the fridge a food pantry.

Some weeks ago I bought some trousers for myself. Being a short arsed bloke the legs always need "taking up". There are at least 3 pairs in the sewing room needing completion. As are several pairs of her slacks which have had the elastic bottoms cut off. The activities spread thread and fluff all over the house. Once such routine chores were 10 minute jobs for her. Quite a few of her clothes have rectangular cut outs where labels and ribands removed.

She has an intolerance for loose threads, often picking at threads in the towelling socks we have on the seating pads on the Sara Steady transported. On morning while seated on the loo I found her pulling threads from the hem on the shower curtain. Of course pulling rather than cutting a thread encourages more thread ends to appear.

Yesterday and today she has been attempting to polish our kitchen table to with Windex and other cleaning concoctions. Shiny while wet but quickly dulls. Perhaps I should attempt to find some furniture polish.

Whenever I discourage her away from pointless activities she becomes quite snappy. I am learning to let her be if I am unable to distract her to other matters. Rather than protest I learn to find where food, cooking utensils, over the counter medications and sundry items have been moved to. It's just that I hate to have to do a mind shift when reaching into a cupboard for an item. Except for prescribed medications, they must not be moved!

Our new phone system extensions with larger buttons are easier to operate (to my mind) but she still has problems disconnecting calls, even on 'speaker phone", unless the handset can be suitably positioned to be completely hands free.

Several days ago on asking for a script for Simbrinza (glaucoma medication) to be filled the chemist told me the stuff was on back order, he checked around town at other chemists but there was no supply available. Her eye specialist is away until the end of November and the rooms he works from are closed until next Monday. I checked with our optometrist (the truly professional person who has identified our vision problems) who said there was a Simbrinza equivalent which contained a beta blocker so she advised returning her to AZOPT. Our GP gave us a script. This morning she began having AZOPT drops again, twice each day both eyes.

She is presently counting her money, loose change I leave on the cupboard after shopping. I tell her when she has $100 we will take the lot to the coin input ATM, she now has $73. She returns to cleaning the table top; I find some furniture spray. The day rolls away.

Chapter 478 - An Ending, A Beginning

Another gone, how many more left? A quiet Xmas alone except we attended a lunch in our village hall with others left by themselves. One mentioned the "Duchess", a lady who, with her aged husband in tow, relocated a short distance north of Big Smoke a year or two ago. Some months ago she lost her husband then her two sons (30 - 40 years old) to an inherited medical condition. I rang her, leaving a message. On Boxing Day she returned the call, telling me almost immediately that 2017 was the year she lost her "three men".

Another call from our daughter that same day was much more joyful; our eldest grand daughter was expecting a baby next July. I took the handset into our bedroom for my PWP to hear the news first hand. The conversation was short; I suspect interrupted by accidental button bumping even though the handset was on speaker.

So I sent the following text in an email:

Thanks for the joyful news this morning. I had hoped the news would inspire some enthusiasm, happiness, in [PWP] but that was not to be when she was intent on sorting through our wardrobe for unused clothes and 2 new pairs of trousers of mine needing the legs shortened. I have now stood on a chair to have pins inserted in one pair for her to busy herself with for the rest of the day.

So sad.

Two days later the following reply:

That's OK.
I had figured as much, given Mum's present state of mind.
Mum wasn't very enthusiastic about my pregnancies or her grandchildren either. At least to me, what she was like with others I believed was a bit more positive.
Maybe [Grand Daughter's] news will sink in a bit more over time or after the birth.
[Grand Daughter] is happy that you are excited at least.

To which I replied (in part):

I suppose it could be her "present state of mind" from your point of view except that it's her long term deteriorating PD condition in action; lack of emotion, slow unmodulated voice, inability to complete a task in hand before being distracted to something else, slowness/difficulty doing a task and from time to time says of herself that she has difficulty expressing her thoughts into words.........

I continued, in an effort to defend my PWP, by citing several instances to illustrate my PWP's enthusiasm and concern about our daughter's difficult pregnancies almost 30 years ago. My comments were not appreciated, resulting in a much longer response which concluded with:

Get your facts straight. There are many more things that you are probably ignorant of and things my mother has fabricated, exaggerated or just not told you. I am guessing I am all to blame in your eyes. I'll let that be your problem because I won't make it mine.

I have decided  to neither further this correspondence nor to attempt to clarify the number of issues raised in the email by discussing them with my PWP. A beautiful event has been ruined by misconceptions, faulty memories (mine included) and lack of personal contact.

A few days before Xmas her new recline-able, tilt in place wheel chair was delivered. There are some minor difficulties about it that we are still getting used to but the great benefit of it is the ability to make her comfortable.

Last Friday a pleasant lunch with her sisters et al at the Highlands club.

I'm unsure whether she completed raising the cuffs on my trousers, begun on Boxing Day. Yesterday she spent a number of hours attempting to sew some lace around fabric to make a table cloth. As she fatigued late in the afternoon she said she was unable understand what was happening; after hand stitching a length of the fabric she would discover she had unpicked it again; seemingly doing this repeatedly without understanding why.

She continues to sort objects in cupboards and the fridge; often only several days elapse between sorting the same cupboard; unless it's my memory failing. Pulling threads in clothing, towels and the like is a common pursuit lately. Some time ago she began cleaning labels off small jam bottles and for which I often needed to apply turps to remove glue residue; not knowing of any purpose for this activity I was quite proud of her when she began handing those bottles filled with chocolates, topped with Xmas coloured pieces of fabric, to each of the carer ladies from Wild Dog when they came to shower and dress her before Xmas.

This season I refused to send Xmas cards, instead responding with post cards displaying a local town scene, rather than pseudo religious icons, Perhaps next year I may advise all who send pithy family stories how to access this blog. It's not that I'm bitter, just not as sweet as I once was.