Chapter 344 - Early Morning Stress

In the previous post I described the events of early Monday morning. Well, when on a good thing, stick to it. We had our usual lunchtime fare; a spud boiled in the microwave, then cut in half, a handful of grated cheese added, micro-waved again, then sour cream and salsa (for me) and chutney or pickles (for her) added. There was a little Rosella Fruit Chutney left in a bottle, so I used that on her spud. About half an hour later she mentioned that her top lip was swelling and tingling. I could see nothing amiss. Another half an hour later at 1320 her top lip began to look like a duck's bill. She was not light headed, no pain, not bilious but her whole left foot tingled yet only the toes on her right foot. Blood pressure and temperature were 130/89 76 and 36.8C. She became distressed and measured 164/99 84 at 1350 after going to the loo. "OK, to the hospital" I said. "Call the ambulance" she asked. I resisted, perhaps a typical way to avoid the prying eyes of the other old farts in our village; "Ask not for whom the ambulance comes, it comes for Thee". There was no problem helping her into and out of the car from the wheel chair. The Triage nurse checked her over before giving her an anti-histamine by mouth, pointed out that half the town were in front of us so please wait. We waited till around 1600, her lip was subsiding, we told reception we were going home. At home she needed the loo, then again at 1700 and again at 1740; the last two times using the wheel chair there and back. Her top lip was still slightly swollen.

On Tuesday morning she missed taking the 0200 Sinemet, no mishaps with her weighty night time bloomers which weighed 1.55kg at 0645. At 0800, after Personal Care had showered and dressed her, she said "It's not kicking in as it used to" referring to 0600 meds. I checked her at 0830, finding her sitting on the end of what is now my bed, head forward resting on some sheets she had folded on her knees - in a deep sleep. 0835 a piddle on the loo, then a poo at 0930. She was very sluggish to and from the loo. Today was Sheltered Workshop Day. Very slow getting to and into the car. After arriving at the establishment she was unable, or could not compute how to get out of the car. We waited for more than 5 minutes before she was able to transfer to her walker. I collected her around 1600 when we popped in to speak to the person now responsible for these respite days so that she can attend each Saturday as well as Tuesday.

Wednesday an average day except on two occasions around 1000 and 1420, both times on the loo, her CB radio was not close at hand for her to call for help. She wasted half an hour attempting to call out to me in my Dungeon. Quite stressed as a result.

By 0545 Thursday morning she was in much pain having been on her back all night. Very painful thighs, lower back and buttocks. Packing her with pillows and beneath her feet helped as she sat on the side of the bed. At some unearthly hour of the night she had told me there was a buzzing noise in the room; I told her it was simply my CPAP machine; I could hear nothing. Thursday night I decided to move her Apo pump changeover forward to 2130 and fit her overnight bloomers so that my chores were complete prior to her 2200 meds, allowing me to get to sleep earlier.

All went to plan until 0345 Friday morning when she woke me.

She began describing what was happening to her and by about 0410 I was awake enough to scribble the following notes .............

"You're going one way and I'm going the other" she said. Had been awake for ages. Has been laying on her back. Very excited. Grappling with bed rails, pulls herself over one way but then goes over the other way. Thinks she is going further and further down the bed but her head is within 200mm of the head board. Legs aching. Bare legs, no bed clothes on but is hot. Asks me "Can't you see what is happening?" Says "I am definitely not asleep, feels like gravity is pulling me the wrong way. This is the worst it's been, this moving, yesterday needing pillows to sit up straight. Can you hear my bed?" She thinks my CPAP machine is doing something to her bed, so I switched it off. She said "There is still a vibration." She raised the head of the bed and I could hear a buzzing sound. Earlier she said she was adjusting the bed and the vibration came "then all this business started" by which I imagine she referred to the moving side to side she experienced.

I used a piece of dowel to listen to each of the motors (equivalent to the old technique "stick a screwdriver into your lug hole, the other end onto an engine or whatever" to hear a rumble or a knock); the centre motor, with power supply and control box attached, which adjusts the head end of the bed had a low level buzzing coming from it, typical of a switching power supply. The buzz did not change as each of the motors was activated. The buzz stopped when the bed was switched off at the power point. I noted that none of the metal bed frame components were bonded to the earth wire in the power cable; strange for piece of medical equipment.

At 0440 she felt cold, needed the bed clothes on. She attempted to describe what she had been feeling, that she was moving past objects. I suggested "like on a merry-go-round?", she said yes.

I wondered later whether she experienced the feeling of being drunk when one's head feels as if it is swinging sideways but other senses indicate that is not so.

By 0450 she was beginning to panic, saying "For 3 nights now I have missed the 2am Sinemet.". Both feet were tingling like crazy. Five minutes later the tingling was all around her genital area.

At 0550 she had scheduled meds; a little later we removed her heavy night bloomers, then onto the loo for a poo but nothing came. Shortly before Personal Care came at 0700 I placed her Apo pump in its container and sticky taped it shut .

A quiet morning while our Domestic Engineer vac'd and washed floors and sorted some of our cupboards which I get in a mess. While she was here I went to the chemists for one of my own meds.

She needed the wheel chair from the loo to her recliner at 1340. I bolted in to her at 1400 when a loud noise occurred next door, thinking she may have fallen. She was OK. She was unable to move her left leg, although it was relaxed and movable in my hands. Both legs were "burning". I rubbed a cream on her right foot and on her left foot and lower leg.

By 1430 she experienced strong head tingling, also in her genital area, before falling asleep in the wheel chair. She was alert by 1500 when I pushed the wheel chair to the kitchen table where she is now sewing again. The tingling sensations in private places is very reminiscent of the outcome of being over medicated when she was discharged from the clinic in Batman City many years ago.

Here's hoping our weekend is quiet.

Chapter 343 - Delusion at 4AM

I woke at 0400, laying in the darkness for awhile not wishing to disturb her, for then she'd become restless, looking forward to her 0600 meds. But I needed to go. She was already awake. She asked for another pad to place in her incontinence bloomers. "Why, the pants and the pad will absorb well over a litre of piddle!" "But it's all wet" she said. "You won't be able to simply pull the pad free, it's just too difficult without releasing the sticky tabs on the pants" I replied. As a minor domestic began, I relented, grabbing another pad insert from the cupboard, whereupon she put her hand inside the pants and pulled out the pad. I was amazed, then I realised that the pad was perfectly dry except for two small drip marks on it. I asked her to feel in the pants; dry. So from 2200 to 0400 she had not voided at all!! So why in hell did she believe she was "wet"? Now she wanted to piddle. I wheeled the commode over and helped her onto it. Sounds of a reasonable stream rather than the usual slow drip; must be a litre I thought. I measured what was in the commode pan - only 200ml. I hadn't bothered to record the last time she had piddled in the loo last night but assume it was between 2130 and 2200 so 200ml was not very much. As a comparison, I weighed dry pants plus pad in the same bowl as I weighed wet pants and pad back on 10th May. Since the wet pants and pad weighed 1.45kg on the 10th and this morning the dry weighed 0.55kg, roughly speaking there were 900ml collected back on the 10th. Also, when she had catheters inserted, the over night bags collected between 600 and 1000ml. We both returned to bed, me very irritated. I went back to sleep listening to the Goon Show on the radio. Or was that as I woke again at 0610? She had not dribbled and did not want to use the commode. So I went to do 10 minutes of Wii Fit Hula Hoops, halfway through realising my CB radio was still in the bedroom. Returning to the bedroom, I found her seated on the commode, with its wheels unlocked, and not where I had left it. I locked the wheels then returned to finish my exercise. Back in the bedroom at 0630 she told me she wanted to walk to the loo for a poop. I wheeled her there, checking that the "occupied" sensor was working so as to know whether we were due for a bum wiping problem like we had yesterday. The sensor worked. (Yesterday I checked the operation of the sensor; it can be operated by gently touching the position with a finger tip, a cold spoon, but not by the weight of a partially full plastic bottle of shampoo. So it is neither a temperature, infra-red or a weight detector. Perhaps an induction sensor? Anyway, yesterday's problem suggests that her buttocks were not in close enough contact with a 1cm square area of the seat which I have now marked with red ink so a finger can be placed on it next time.)

Time had run out for me to have a shower before care came to help her have one. I made breakfast and showered later. I may delay my shower in future since that removed some stress in completing necessary tasks before her shower.

After the care had gone we discussed our situation, that at this time she does not really need the luxury  of outside help for showers, yet we believe we need to be in the "system" to help us cope with developments down the track of life. I need to find an independent helpful person for advice.

And this morning's delusion makes me wonder whether that was a matter of PD symptoms (that is, cognitive decline), reaction medication changes (so perhaps temporary) or medication side effects from quantity (so perhaps permanent at current meds levels) or her system returning to some normality in that her bladder is not undergoing spasms or whatever induces nocturia (to be hoped for).

Below is her current meds schedule.

Chapter 342 - A Milestone Passed

Her feet behave strangely. Last Tuesday, after spending the whole day on her walker at Respite and needing the wheelchair to transfer her from car to recliner at home, she complained that as I removed the elastic tubing on her left leg that touching one foot, either one, caused tingling sensations in the other. I think I have noted this effect before.

On Wednesday at 4am I woke when she thought she was rolling out of bed; I raised the rails while she took her 2am Sinemet. Her speech was slurred. The last of the antibiotic at breakfast. At 1:50 I found her on the plastic chair next to her loo unable to walk. Eventually at 2:15 I wheel chaired her to her recliner. She described burning in both legs and pain in her left arm. Again at 2015 she needed assistance to get off the loo.

The fact has dawned on me that when I am "respiting", away from home for an hour or two, and someone from the Care place is looking after her, she cannot be assisted to any great degree onto or off chairs or the loo. Against OHS rules. The "carers" are not allowed to lift her. No one has specifically mentioned this. When I asked one of the women who help shower her of a morning about lifting she said that when such help is required, the person in attendance will ring for assistance which will be here in 5 minutes (they work out of the institution about a kilometre distant). Perhaps that is a possibility if the backup assistance is ready and waiting; however I doubt whether such speedy response is available outside normal office hours. I queried the Coordinator of TACP to be told the same. All this is so very reasonable, yet begs the question about how the "resident" carer copes on his own. All very well on the one hand to repeatedly say that he needs respite but on the other not to be forth coming with the logistics of what the PWP may face in his absence. And should we ever have a lifter or sling to assist transferring her then such need to be operated by two people; where does that leave a lone carer? See further on about Saturday's experience.

Thursday I drove to Hot Air City for her appointment with Polly the PD Nurse. No more "free" chauffeur services now that she is discharged from TACP. We paused as usual at the rest stop with toilet facilities on the edge of Dry Lake. On the return trip I had a snooze at another rest stop after dining at a MacDonald's for lunch and wheeling her around a BIG W for some clothes and as an "outing" for her. At the Hospital I wheel chaired her to and from the appointment. Polly obtained approval from the urologist to increase her Apomine to 12ml per day. After returning home I made the following notes:

1745 seated on recliner feet on square pillow, unable to lift left foot, able to lift right foot slightly - sort of paralysed, I can easily lift either foot - negligible tingling, no burning but feet are a dead weight - feet are bare and cool, big toes feel large - hardly feels light touch on left foot but scratching hurts, right foot senses light touch better - touching big toes together causes tingling from calf of left leg to heel and little toe.

So Thursday night I filled the syringe with 12ml of Apomine and 8ml of saline and  Friday morning was a bad one for her.

Some notes I sent to Polly on Friday:

**********************************************

0100 - [She] woke me, cramping in thighs and calves of both legs, I rubbed them with Ice Gel, giving some relief. Her mouth was dry, sipped water. About 0115 she was feeling better. 0120 checked pump reading as 20:51 and OK.

0440 approx - [She] used the commode after removing the Molicare pants which were quite heavy with content.

0600 meds failed to kick in until 0830, and then "suddenly" did so.

1000 meds taken normally but she said she was not "waiting for them as usual". [She] has been hand sewing most of the morning but she said she was going over the same actions (pinning pieces of fabric together etc) without getting anywhere but by 1130 her hands were freer and she made progress.

1145 I had her call [the Care Place] to ask whether she may attend Respite tomorrow, Saturday (in order to sample Saturday's activities to see whether suitable as respite). No one answered (all in a meeting it turned out) so [she] left a message and in specifying our phone number she muddled the numbers and I corrected her 3 times (I think) before she had the correct numbers and sequence. This bothers me because her ability to handle phone number strings normally amazes me.

When I asked her to describe her last night experiences she simply said "horrendous". It was difficult for her to describe what that meant and I had to persist to hear "back and legs cramped up", frequent piddling", "pants very heavy with piddle", "head tingles continuous since last night, not spasmodic as before", "dull head ache all day", "did not feel fine after shower and dressing".

{She] looks weary, speech "thick" at lunch time. I found her asleep in her recliner at 1350.

At 1400, about to take her meds, she pushed her trolley out to my dungeon to tell me both legs were aching as they were in bed last night, toes on both feet "sticking up" and feel "they don't belong" to her.

She looks tired and sluggish in mid afternoon.

******************************************************

Late on Friday a new adjustable bed arrived for her, one which is height adjustable, which is what we should have bought earlier but that was before I learned when she was in Re-hab that the height adjustment is really for the benefit of carers' backs when attending to patients, as when attaching infusion needles. So I now have her old adjustable bed, finding it much more comfortable than my old bed (which is in pieces in pride of place in the lounge room at the moment). Working at re-arranging our bedroom for a couple of hours was exercise I didn't wish for. Into bed at 2030 her left foot was tight from toes to arch whereas only her right toes were tight. The dull head ache had faded by 7pm, no burning sensations, was speaking OK but she was a little disoriented, now being in a bed on the other side of the room (her old bed was too heavy to move around; her new one has lockable wheels).

At 0130 Saturday morning I woke to find her playing with the bed controls, attempting to switch the wall mounted fan on, for the room temperature was unusually warm. She returned to sleep, missing the 2am Sinemet, waking again at 0530 with tingling right foot toes and over her entire left foot. Her right foot was tight; so was the left as well as up to the calf.

Prior to going around to the Sheltered Workshop for respite she used the loo for a poo, then found that the bidet failed to provide a wash cycle. I found that the seat's body detector was not working and no matter how I re-positioned her, the "occupied" light never came on, thus no wash cycle. She attempted to wipe herself with toilet paper but her right hand is incapable of reaching to the appropriate place, partly because of her shape and a smallish toilet seat. So we reached and proceeded beyond the milestone we both hoped we would never reach. I placed a surgical glove on my right hand and performed the function she had decided I would never have to do.

With that milestone behind (pun not intended) us I took her to respite where she had a pleasant day while I did some grocery shopping and watched the movie "Belle" an excellent movie and the only one worthy of watching in town at the moment, then a light lunch at the Club where I bumped into an acquaintance whose PWP is now in the nursing home section of their retirement village. He seemed a little lost.

Last night at 2200 meds time and Apo pump changeover I noticed that the heels of both her feet were bright pink; she said they "were burning up". She also needed Ice Gel across her shoulders. Again she slept through the 2am Sinemet, and that may be partly due to less sleep disturbance since she has been using the Molicare piddle pants at night (eg last Sunday) as well as the increase in Apo. Unfortunately for her back, when she woke at 0450 she had not moved from her right side where she had me position her last night. Her mouth was dry; she asked for her water bottle.

Chapter 341 - Going Downhill

The direction we are heading is not good; am I becoming depressed? Hard to tell, being within myself looking outwards life is becoming a chore, always tired, reduced sleep, feel exhilaration after friends visit releasing us from the daily grind. I have done no thread painting since September last year and my new interest, 3D printed lithophanes, has quickly become of little challenge, not so much a challenge anymore although I seem to be losing the desire to be creative. Every  once in a while I am challenged by a technical matter, a feeling of interest in resolving a problem that quickly becomes annoying with little satisfaction once solved.

Writing this blog is tending toward a chore. So what follows are some edited emails (I do so detest that word "redacted" but then I'm modifying or deleting words rather than hiding them behind black bars of felt tip pen).

"I dropped off a mid-stream sample yesterday afternoon, in the mean time Dr I. provided a script for Cefaclor, which I collected from the chemist this morning. Girly pink fluid because the PWP has had a hell of a job swallowing BIG pills or gelatin capsules; D. the RN organised that, since I assumed antibiotics were, well, pills.

Dr I's receptionist will Fax a 50/5 Apo to the Hospital Pharmacy sometime today so I had better double check that. We have enough on hand to last until next Tuesday.

I have been drawing up two x 1ml every second night, placing one aside, after expelling any air from the syringe, for the following night, and then topping up with 5 x 2ml ampoules. So I will do the same with 50/5 but fill both syringes up to 11ml then add saline. And dispose of the remainder of the Apo. Will our Prime Minister's Thought Police punish me for such waste? ;-)

By the way, is it better to store the 11ml of Apo in the fridge with/without the saline added?

By the way, I left [her] at home alone for 20 minutes, with strict instructions not to do anything, while I collected the antibiotic and when I returned she was cleaning out our kitchen's tea/coffee cupboard (I know I leave it in a mess). Five minutes later her left leg began to "burn" with more tingling, what she refers to as a "hole" in the outside of her left leg felt "funny", and her left foot felt as if it was leaving the floor. The foot wasn't and she had to lean against the bench top to support herself. She needed help to her Rotary chair where she wanted an iron and the small ironing board to iron some fabric she wishes to cut up.

I am becoming less skilled at fitting these all night sauna bloomers on her; last night's effort leaking, so a load of washing this morning. Yesterday I ordered the largest size.

Just another day :-( "

"Recently [she] has been forgetting names, worse than I usually do. L., a recent acquaintance, has been visiting [her] lately. We first met L. and her PWP at our PD group. L. is a hospital visitor and since [her] stay in rehab, visits [her] every so often. L. arrived spot on 2pm today ([her] meds time). As she was leaving at 3pm [she] first called her "Barbara", realised her error , then called L. "Patricia". We made light of the matter. [She] then needed the loo and suddenly at 3.20pm [she] remembered she had missed her 2pm meds,distracted by L's. arrival.  Also [she] told me when she was speaking to L. about grandchildren that she "muddled up" the names of ours. [She] commented that her speech has been slurred, to be expected I suppose.

I hope the name forgetting is just a matter of missed meds."

"No panic (yet) although this morning she woke at 4am (I was already awake - bad night) then switched her light on & when I asked why, she said (half asleep) that she needed to take meds at 5am and shower at 6am. I was unable to figure out where such ideas came from. Then at 5.30 her bloomers leaked when she rolled onto her side. The damned things were not overly full because its the weight  was much less than on another morning so although these larger ones fit her better I may have left too much slack. (yes, I know, anal retentive ;-) Experience dictates I will perfect this business to minimise the washing!!

I note that a side effect of this liquid antibiotic can be delusions. We have to get out of this antibiotic cycle. The uro at [Highlands Town] said that catheters are a last resort and the GP says most women live with a mild UTI.

Dr I. faxed a script for 50/5 Apo to the Hospital (I like the way this bloke and his staff are so helpful). When I checked with the hospital's pharmacy that the script had arrived OK, I was told that quite unexpectedly some 20 packets of 20/2 Apo had arrived out of the blue. "

Our time with the TACP people is coming to an an end so that we can accept a "Level 2 Package" of care even though she has been assessed for level 4 of which there are no spare slots at the moment. Level 2 means we have 6 hours of assistance from the care provider. For a few we dabbled having the visiting carer complete other tasks, such as hanging clothes etc rather than showering her, which she can largely do herself. But the other tasks are just "make work" whereas bathroom activities are potentially dangerous so I decided to have the assistance shower her at the earlier time of 7am by which time she has had her 6am meds, I have helped her out of her night "bloomers", packed the Apo pump in its sarcophagus and applied tape around it for water proofing and then showered myself . When the assistance arrives I make our breakfast. Half an hour a day for showering and dressing consumes 3 1/2 hours of the 6 hour allowance, leaving only 2 1/2 hours for other things such as being driven to appointments, which is not much. Even though being driven to the Hot Air City hospital entrance for Parky nurse appointments is quite enjoyable, I must drive, park and push her in her walker from now on, since the round trip plus appointment lasts about 4 hours, not counting a rest stop for lunch. Perhaps I will use the time for a movie should something reasonable be showing; usually not. We believe only 3 showers per week are the norm in institutions; and that I don't consider satisfactory for anyone wearing soaker bloomers all night every night and is very prone to UTI's.

She now makes lace bordered pillows for the Sheltered Workshop so the kitchen table continues as a work bench. Perhaps she may attend for respite there another day should the other participants be able to provide a degree of social stimulation for her.

Chapter 340 - A Bloody Surprise

Around 5am this morning I tip-toed out to my loo (hers has a bidet attached so I don't use that) trying not to wake her but on my return she had woken. She saw blood on her top bed sheet, then a large bloodied area on the bottom of her nightie, as well as some on the incontinence pants she now wears to bed (more about that later). She took the pants off and I had her sit on the commode to relieve herself rather that use the loo, thinking to myself that if something serious was happening she was best not to move too far. I looked at the Apomorphine infusion site, no bleeding; I looked at fundamental orifices as best I could, no bleeding. After checking all around her buttocks and upper legs I found traces of dried blood beneath the right hand side tummy fold at the top of her right leg (professionals surely have a word to describe that area) and wiped it clear with a damp tissue. I was unable to find any cuts, scratches, small penetration marks or such. No fresh blood appeared on her skin surface. There was only a mild reddish "blush" a few cms square in the area. So I wheeled her into the shower where she washed herself and then I helped her dry and dress.

Now about incontinence pants, bloomers or nappies ( what some foreign nationals call "diapers"). After she saw the urologist up the 4 lane at Highlands Town last Saturday and what having to go to Big Smoke to a hospital for uro-dynamic tests (I think I am correct with that word), taking most of a day to do so,  and although TACP was willing to arrange transport to Big Smoke on this occasion, we will soon be disconnected from their care, requiring other arrangements to be negotiated so I had Dr I. our GP fax a referral down to Hot Air City to Dr H. the urologist who looked into some of my inner workings several years ago.

This change of plans has precipitated TACP handing my PWP directly into the care of the support organisation currently providing respite and shower assistance, but also because there is a "level 2" care slot available now which we are advised to accept rather than be on the end of a queue when she really needs it. She has been assessed for "level 4" support but that may not be available for some time (there has been mention of 50-60 on a waiting list). After next Tuesday's budget from our current rabid uncaring government I fear there may be changes in such forms of support. I feel obliged to continue to pay $65 each week as a form of insurance against whatever befalls us around the next bend of our downhill ageing pathway.

Since eschewing catheters a week ago we returned to her rising between 2 and 6 times each night for a piddle, although one night only once! We both declined into tiredness and feeling frazzled, she trying not to wake me and so risking falls even though the commode was beside her bed. Speaking to one of the support ladies one morning about the nocturia, the incontinence "nappies" were suggested, being described as keeping the skin dry yet able to contain a lot of fluid. As the lady extolled the virtues of the devices I asked "Have you ever tried wearing one all night and piddling yourself" and she, slightly embarrassed, said "No". My PWP decided such may be worth a test so the lady said she would arrange for to be delivered for trial. Somehow or other, the helpful TACP coordinator became involved, later in the day arriving at our place with several to trial. So for the last two nights she has worn a nappy and we have slept better for her doing so. Except for her waking at 5am this morning and finding blood..........

Now that the visiting support ladies do not have shower duties because we have reverted to me wheeling her in and out and helping with dressing we look for tasks for them to fill for a half hour. Yesterday it was hanging washing on the line that I had to take in when rain began an hour later; today it was hanging clothes on hangers plus some helpful advice about attaching the incontinence nappies.

This past Friday she was due to cancel another Motillium. In her independent wisdom some days earlier she decided to do that and take the remaining four at 1x4 times a day. I must tell Polly. There have been no after effects and she has nor complained of biliousness and bloatedness in many days.

Polly forwarded a copy of the report from the Kinetigraph she wore a couple of weeks ago; I had better not post any of it here since there may be proprietary restrictions. Most interesting results confirming her comments that early afternoons find her slowing down unable to do much with her hands and her need to think about bed from around 8pm. As I see it, her PD symptoms are very much under control. Some more active ingredient in the Apo pump may work wonders. Of course she continues to take lots of Sinemet. If her left leg was able to reliably support her then her world may be better. The dystonia twisting of her left foot may have been eased somewhat by an ankle elastic brace, worn something like a sock, organised by our friendly TACP coordinator. I must remember to pay for the device. At odd times her left foot is very dyskinetic for brief periods. Sometimes she suspects her right foot shows similar symptoms to her right.

Chapter 339 - Not Sure Where We're Going

What a title for a chapter; does it suggest confusion? Goes hand in hand with this week I suppose, beginning with emptying catheter bags without any leaks, recording quantities in my anal retentive manner, even to noting some "particles" in the otherwise clear 300ml I emptied around 3pm on Monday last. During her Tuesday at the Sheltered Workshop she found the catheter was uncomfortable, although I suspect she found it so most of the time; then at home afterwards I found some coloured drip marks on the bidet seat after she did a poo, whether urine leakage or over spray from the bidet I couldn't determine.

Then the visiting RN came on Wednesday to replace the catheter (it having been in situ almost a month), did a dip stick test to detect another UTI. My order for catheters had not yet arrived so the RN planned to return the following day. Not long after the RN left my catheter order arrived (of course). I cancelled my appointment AGAIN to have my hearing checked and instead made an appointment for her to see Dr I, the GP, who prescribed a course of Ibilex 500 antibiotic. While waiting for the script to be filled at the chemist we went shopping for a water filter at Kmart where she spread eagled herself on the floor; much attention from staff. Then at home, attempting to take one of the antibiotic gelatin capsules she almost choked and not quite chucked up; I tried a teaspoon of chutney, then blackberry jam, then malt extract  before she was able to swallow the thing. We must remember to insist on not being given such capsules again. She continues to have difficulty even with the malt.

She was minded by Wild Dog carers (from the Respite place) on Thursday for 12 hours while I jollied off to Big Smoke by sodding train for a lunch with the kids I began work with way back in 1956; a dying breed. Some are planning a 60 year reunion in 2 years; I can only wonder how many will attend. I am definitely an aged old fart now; I forgot, on leaving home in the dark, to change the light weight shoes I use as slippers for my going out & about boots then while walking the streets of Big Smoke I could not be bothered to find a shoe shop. Stuff it. Anyway, the RN returned during the day, swapping out the catheter, using both I ordered because the first she tried failed. After I returned home the contents of her catheter leg bag were not looking good; streaks of blood easily seen. Then a little after 8pm, on the loo for a poo, the catheter came free. We decided to hell with catheters until she saw the urologist K up the 4 lane on Saturday. She went back to using incontinence pants and pads. Each night since we, one or both of us, is rising 3 or 4 times and the new commode/shower chair is parked at a convenient position beside her bed. So far we are no more tired than during the 2 month catheter experience.

By the way, my records show that between March 6th and May 1st she had 7 catheters fitted of which several "failed" on insertion and two "fell out". Various nurses inserted them.

Courtesy of the TACP, we were driven up the 4 lane to see Dr K on a wet and cold day yesterday. We were on time for the appointment, he was running an hour late, we saw him for no more than 15 minutes. He says catheters are a last resort. He has never heard of the laser treatment she had over West in 2000 that "strengthened" the bladder opening. She was offered a Botox treatment for her bladder (in Big Smoke of all damn places, why did we agree with the GP to see this bloke rather than going to Hot Air City?) but first she must have urine and bladder tests here locally. After reading the hand-out material this morning (she didn't want to yesterday) she was in tears, protesting that she won't be able to remain still enough for all this poking and prodding, having catheters poke into several orifices. The only help I was able to give was that it's the responsibility of the doctors to cope with her condition rather than for her to comply with them. Unfortunately, I fear the whole experience will be uncomfortable at least and embarrassing for her. Remember the old statement "specialists know more and more about less and less"? A classic; when we told Dr K. that she was on an apomorphine infusion pump, his immediate comment was "Why, are you in constant pain?" We had to explain that Apomorphine was a PD drug, so at least he learned something by our visit. He noted that the GP Dr I. had mentioned in his referral that the her neurologist Dr M. did not wish her to take Ditropan. She really needs some comforting talk about all this.

Strangely, almost interesting, Since she has not had a catheter inserted she has not felt bloated or bilious. She blamed the catheter for inducing those discomforts ever since they began; I scoffed that a tube stuck up one orifice was unlikely to produce such effects in a different "circuit" in the body. We will see.

I had mentioned to TACP that she had trouble from the weight of bed clothes irritating and causing pain to her toes. Next thing a "bed cradle" appeared to trial from very responsive helpful people. This was a framework which elevated the bed clothes at the foot of the bed. At first she thought she was kicking it so I made that impossible by adjusting the cradle's height as well as placing a pillow against it. To no avail; she decided last night she was better off without the cradle. She made a strange comment one morning; during the night she was sure one foot was kicking the other leg but when she looked, her feet were far apart. Her toes and feet continue to be very painful when touched.

Polly the PD nurse advised that there is a caution that Motilium be limited to 30mg per day because of high blood pressure problems. Motilium is the med to prevent biliousness caused by Apomorphine; my PWP has been taking 60mg per day. I became excited about this. Although the caution may be nothing to worry about, her Motilium has now been reduced by one tablet to 50mg per day. Yet we were told at the beginning of her Apo journey that Motilium should not be required after 6 months or so. Also, she is no longer taking any Sifrol.