Chapter 464 - A Ruined Day

She wanted a new clothes basket for our bathroom; only Kmart on-line seemed to have something suitable. We needed some groceries. I decided to go out this afternoon. Some soiled towels and a leak in bed  required some washing first. By mid morning I needed to escape, so suggested we go shopping. I thought she best have a piddle first; which became a desire to defecate (crap) which caused numerous comments along the line of "I can feel it there!" resulting in her donning a rubber glove to search for "it". After 1/2 an hour she gave up and as I helped her pull up her incontinence pants I found them full of shit. And smears on the rear of her jumper, blouse and slacks. This time I did the donning (my own size L's). While seated on the commode she undressed completely, I pushed her on the commode under the shower to clean up, then dry, socks & shoes on to protect her feet before partly dressing, then onto the Sara Stedy to pull up her pants and soon after into the car and down the street, but not before another load of washing was started.

Down the street into the new cafe; our coffees arrived quickly, our meals didn't. Just before I intended to complain, a waitress appeared checking on what we had ordered and 30 seconds later our meals arrived. My calamari was dry and barely chewable. Obviously the order had been lost in a warming tray. Her spud wedges were OK. Then 10 minutes later a young bloke appeared asking if all was OK, to which I replied "this is a bit dry" and refused his offer to correct. We don't need to go there again.

Earlier in the week one of the Wild Dog carers said that on Saturday and Sunday nights her job before us was cancelled, could she "come to us at 1830 rather than sit in a cold car". Of course I agreed. So last evening we prepared the usual matters before 1830 but the woman failed to arrive until 1850. When I pointed out that she had wanted to come at 1830 and I had agreed, the woman replied that the office had given her another job to fill in her time. No one told us to save the stress of sitting on the loo and then the commode for a long time. I was unhappy so shot off an email to the Wild Dog office to tell them I had learned my lesson and will not agree to to "private" arrangements with their carers and I'm sure they want it no other way either. That same carer is expected tonight.

After seeing her podiatrist on Thursday I took her to a dentist appointment that I made after she mentioned that her front lower teeth were at an odd angle. The dentist found nothing amiss and did not bother even to clean them, even though it is over 2 years since she last had work done by another dentist she found "too rough". We celebrated a successful morning by having an excellent lunch at the club, although that evening she became very dyskinetic and twisted in bed. The evening Wild Dog carer commented on her smile, obviously not her usual PD grimace. The dentist described the location of the saliva glands in the mouth; that the ones on each side of the upper gums produce "ropey" saliva and a more appropriate description of the spit as thick as snot her mouth has produced lately could not be found. Since I stopped her using Biotine toothpaste and mouth spray she has not commented on the thick spit, although she occasionally spits into a tissue but nowhere near as much as before. My theory is that her ropey saliva glands are stimulated by the Biotene rather than the glands in her lower mouth which produce thinner saliva.

Wild Dog care minded her while I saw my "shrink" in the late afternoon of Thursday. Another useful chat. He thinks she may benefit from talking of her fears of a nursing home future should I succumb first. I will need to broach the subject with her, for she has negative memories of the therapy in aftermath of the Queen St Massacre many years ago.

I had a RAS assessment at home on Tuesday which will permit me regularly to attend a dementia carers group. She was quite disinterested in what the questioning was all about and went about her own business. It seems I will now be eligible for support in my own right such has domestic help about the home. Although the route to obtaining support is at times none too clear, I am surprised at how much assistance we are given by the government. For instance, the application for additional incontinence aids was approved and I placed our first order on Friday.

So although I feel somewhat down in the dumps tonight, this past week has been good to us.

Chapter 463 - Odd Things

During the last week her sewing room was a mess as she moved lots of books out to the TV room and "sorted" fabrics and stuff. Monday I began helping her clean up when I discovered her searching the Yellow Pages to find where old clothes could be dumped instead of cleaning up. She was unable to see that doing so was a distraction late in the afternoon; several garbage bags  with old clothes remain in the garage.

Did I mention I bought a pair of padded covers for the side rails on her bed? After I found her one night laying partially across the bed, feet and hands entangling in the rails. They fit reasonable well except on the cover on the room side I have had to sticky tape down the top edge for her to be able to see her clock and to minimise claustrophobic feelings. Also bought a pillow slip that helps maintain ambient temperature  of her head. The horse shoe shaped neck pillow bought at Kmart was used once and found to give her a headache across the eyes but perhaps she wore it too long.

Tuesday night she woke me at nearly 2200 (we both must have been tired that night to be asleep then) to tell me she was on the "wrong side" of her bed, which is hard to do in a single bed. That morning she woke with a painful back.

The Duodopa pump in regular use failed to switch to Morning Dose mode on Wednesday; its replacement arrived this morning.

We attended a seminar conducted by the state PD organisation at the local club on Thursday. The usual lousy room for such things; poor acoustics, projected slides too small to read, several diagrams not explained fully. She told me later that she "didn't understand any of it". That surprised me; after 25 years of PD experience.

Friday was a messy day. Mid morning she had taken herself to the loo, messed her pants. She had a second shower while I cleaned the loo. After she showered and things had been cleaned, I was reattaching the Duodopa pump when she asked "What is that for?" pointing to the Peg-J tube. That startled and puzzled me; such a question from someone who has had the tube coming out of her stomach wall for 2 years.

Some weeks ago I discontinued giving her Benefibre along with Movicol at breakfast time as recommended when she had the colonoscopy. When she became too loose the Benefibre was discontinued. Then quite recently I reduced the Movicol to 1/2 a sachet so mid last week she was straining, complaining of always have an urge, doing peanuts and marbles only, so back to a full Movicol on Thursday morning. Friday I rang the incontinence nurse at Community Health only to learn that she was away until this week and she is the  "incontinence nurse" on Tuesdays. Perhaps I'll get a call tomorrow. I'm pleased this episode waited a day to happen.

On most nights she yells and laughs in her sleep, waking me. I'm having her take her body temperature with her ear temperature sensor which shows between 35 and 37 C when she says she is "boiling" and I find her face/head feels at ambient but her legs and feet feel very hot to me, so I must set up my multi-meter's thermistor probe to record skin temperatures. At PD clinics she is often asked about hallucinations; she often sees shadows or objects and asks whether such are something else. I wonder whether hallucinations may also involve other senses such as touch and temperature, not just the visual.

On Sunday when we went shopping again she said she was "doing everything backwards, felt confused'. Her right foot had crossed under her left (seated in the wheel chair) without her having willed it. Felt funny doing things. Did not remember the fluffy blue top the Wild Dog carer had dressed her in that morning.

Recently she has mentioned that her lower front teeth have moved, with one tilting inwards. She says they are not loose. Perhaps this is the beginning of periodontal problems so I have made an appointment for her for a dentist unseen before; others she has seen lack wheel chair access, referred her to Hot Air City and were "too rough". It may be at least 2 years since she has seen a dentist. She complains that I am domineering.

Chapter 462 - Made Someone's Day

Most Sundays are a day of ritual. Me haggling her to clean teeth and use the loo so that we can be at the mall in a disabled parking slot by 0930 before they fill. So I found a number when we arrived a little after 1000, although I had to paddle in a puddle; seems there is a counsel regulation that a number of such slots must collect rain water. Into KMart where 4 pairs of shoes were bought for her, two same design as the last ones now becoming a little tatty plus another two slipper types; the latter I think only $3 which is fortunate because this morning she finds that they fall off her feet, especially her left which is "dropped". Not that she uses shoes to walk in, being wheel chair bound, but to protect her sensitive feet. Also a horse shoe shaped collar to wear in bed; which she did last night and may have given her a head ache with which she woke this morning. And a small stick-handled vacuum cleaner for the princely sum of $29, for her to collect threads and fabric choppings that she drops on the floor. The other day, while she sat on the loo, I removed the front wheels of the wheel chair to dig quantities of thread out of the axles; should the vacuum cleaner be used regularly that task may not be required so often. Then to the newsagent to buy another quilting magazine, followed by coffee and hot chocolate opposite. We needed to wait at the supermarket for a wheel chair attachable trolley to be found. Sometime much later the trolley was overflowing as I pushed the semi-trailer combination to a checkout, at the same time carrying a pack of 20 toilet rolls. A good trick I use is to poke a finger through the plastic covering of the pack into the centre of an end roll and that makes the pack so much easier to carry. As I dumped the toilet rolls on the check out conveyor followed by food stuffs I said to the cashier "Do you think it strange that we spend so much money on foodstuffs then have to buy these things to get rid of the results?". She burst out laughing, saying "You've made my day. I hadn't thought of that before." So satisfying to bring a ray of sunshine to someone. Home again a little before 1300. Although she has not had an "accident" when someone from Wild Dog Care has taken her shopping, she has intimated that this may be why she prefers me to take her, even though she complains that I whisk her in and out of the aisles between clothing racks or food stuff shelving far too quickly.

An experience in bed at 2000 on Thursday evening has me worried. She suddenly told me that her throat "burnt" each time she breathed in. She wanted some chocolate to ease the sensation, but instead worsened it. A cough lolly didn't help. The stress made her hot; needed the fan on (very cold night). Her legs were mildly dyskinetic. Then her spit was thick and sticky as it often is; sprayed her mouth with Biotene. She asked for a fruit flavoured ice cream block and that seemed to help. She thought her throat felt as if there was pepper in it. About 2100 I changed the Duodopa pump to the over night rate then she slept. Waking about 2230 she said her throat tickled when breathing in.

With a referral from our GP stating I was suffering with "carer stress", late Friday I attended my first appointment with a clinical psychologist, DG. When he began the consultation by describing what we will cover, I interrupted to say I thought it may be better for me to describe our situation, so I did, so we ran 10 minutes over the allotted hour but since he arrived 10 minutes late for the appointment I didn't feel too bad. I think I put him in the picture of our PD journey of 25 years; I feel better for that because in speaking to the two counsellors at Community Health during the last couple of years I always felt I never had the opportunity to fully describe our situation. When I mentioned cognitive decline, alluding to dementia, he pointed out that, from his training, PD was a problem in the Substantia Nigra whereas cognitive problems occurred in the frontal lobes etc. Since I am but a layman and he is not treating my PWP I disregarded his comments. Anyway, we got along well and I am to see him again. I left with some breathing exercises.

I have begun only giving her half a Movicol sachet each morning; she has been both loose and "marbles" this past week.

Chapter 461 - An Organising Week

The soup she made in our new slow cooker was reasonably good; we ate 3 evening meals of it before I threw out the remainder yesterday. Needing storage space for the slow cooker, she rearranged the kitchen cupboards again. I wonder whether we will ever use the slow cooker again.

Last week I registered on MyAgedCare and did the same for her on Monday; much easier experiences than when I attempted to and gave up last year sometime.

On Wednesday, feeling awful on a bleak miserable day, I spent most of my respite time at the club reading one of the New Scientist issues previously ignored. That was after having the right lens of my reading glasses replaced and getting some meds at the chemist. I had intended to supermarket shop but I was not capable of such a chore. On arriving home I found that she and BII from Wild Dog had cleaned out and rearranged the fridge and the hall food cupboard (the one she is unable to disturb from her wheel chair), throwing out "used by" items and "stale" stuff.

On Thursday I rang for an appointment to see our GP next Wednesday (respite day) but since he was unavailable that day was offered a slot in an hour's time. Leaving her with her alarm pendant on her wrist, I raced to the surgery and after a wait of 45 minutes saw him and described what I see as her cognitive problems and my 3 bouts of anger so far with her. He gave me  referrals for me to see a clinical psychiatrist for "carer stress" and her for another meting with the geriatrician she saw a year or so ago. My appointment is for next Friday; hers can't be until September.

Since Thursday her bowels have been very loose so I am putting no Movicol in her morning fruit juice.

She has been knitting a square to become part of a blanket; begun a week or two ago. Saturday morning saw her begin a second square with a different "yarn", fuzzy stuff attached to a string. She quickly found that this knitted more thickly than the first, so had the brilliant idea of splitting this second stuff in two since it was made of two strings. I attempted to discourage such an idea, the ball was only worth $7, and we can go and buy some more suitable. She insisted on continuing her task. Of course the result was much fluff and pieces on the floor and numbers of small balls of the yarn because she had to break it every so often. I left her to it and shopped for an hour at Coles, she at home wearing her pendant. Mid afternoon she accepted the challenge of sorting two baskets of washing, deciding that her previous task could be left; I hope not begun again. However sorting washing became a job of re-sorting the linen press, trying to measure and separating the sheets for our differently sized beds. By the time the carer came to put her to bed I needed to stuff clothes and sheets away to be able to move the wheel chair and Sara Stedy into and out of the bedroom.

Last night just before 2200 I changed her Levadopa pump flow rate from 5.4 to 2.2ml/hr, or at least I thought I had. Around 0500 this morning I woke to find her laying across her bed, kicking wildly. The pump setting was still at 5.4!! After changing the setting last night I must not have pressed the Enter button on the pump, the button that registers the change of setting. I stopped and disconnected the pump at 0515, and when the dyskinesia kicking did not slacken by 0615 I gave her two soluble Panadol and a small Turkish Delight bar. Her movements slackened within 15 minutes; she wanted the loo so I transported her on the Sara, then onto the commode and back to the bedroom where she had her feet raised on the bed. The dyskinesia ceased by 0640. I started the pump again at 0645 without giving her the Morning Dose. When the Wild Dog carer arrived a few minutes later, her legs began again and she was somewhat stiff to move for her shower. After breakfast she returned to sorting the linen cupboard again, mild dyskinesia so she administered herself a Bolus.

To one of the clubs soon to have lunch.