Chapter 597 - Another Trip to Emergency

On getting her up at 0720 Monday 24th May there was a big turd in her pull-ups. Then after she had been on the pedal machine  another large and some small in the pot. Late that morning  her dyskinesia was bad so I returned her to the pedals which seems to alleviate her kicking, and several minutes later found her asleep. Then about 1400 dyskinesia bothered her again so another short period on the pedals until she began dozing again so I transferred her onto her bed where she slept for about an hour. To bed by 1900, laying on her back without dyskinesia, listening to an audio book until 2230 when she woke me to stop the book reading.

The next day, Tuesday 25th May, she was hard to wake when I asked whether she wanted to get up, saying "Yeahh" without moving. I stripped my bed, for the day was Domestic Cleaning Day, then I asked her again "Do you want to get up? Go to the loo?" "Yeahhh" yet her eyes did not open. Then she said "Cold" so I pulled her sheet and quilt back over her, her eyes remained closed and mild dyskinesia began then stopped Then at 0730 and 0745 I asked "Do you want to get up? "No" was the answer; this was unusual because most mornings she is eager to urinate, even though her pull-ups may already be quite heavy. So I showered.

At 0800 her eyes were open and there was mild dyskinesia, still not wanting to get up, she said she "had aches and pains everywhere". Her tummy was sensitive when I pressed low on her left hand side. She wanted to be rolled over, vaguely indicating her left hand side. As I moved her I felt that her pull-ups were very wet. Comfortable on her left hand side she began returning to sleep. Using her small wrist BP monitor a reading of 183/94 and 140 pulse rate was taken on her left wrist. The oximeter measured 92% and pulse rate of 100 on her left index finger. She still did not want to get up but "Feel alright, just want my legs to stop".

I rang the Home Care Supervisor at Wild Dog to ask whether their nurse could have a look at her before I rang for the ambulance. By 0830 her eyes were open, said she felt "Alright" before closing them again. She was more awake by 0840 when I again checked her BP at 146/78 69. I gave her some tissues because her mouth had excessive thick spit. She remained on her left hand side without dyskinesia. Then at 0850 she wished to get up, so I transferred her onto the commode, where she piddled but no poop, then onto the pedals. The nurse arrived at 0900 when the "patient" was about her usual self. The nurse left as a carer arrived, along with a trainee, to give her a shower and to dress her. Just after the Carer left the interstate volunteer rang to have the weekly video chat with her over Skype. I did not bother ringing for an ambulance. The day continued with its normal hum-drum activities. At 1830 I discovered that in the morning's activities I had not replaced the Duodopa cassette, which I found to all intents and purposes empty, there being only a small blob of white fluid left in the cassette.

Wednesday 26th May began at 0100 when she woke me because she wanted the toilet. Dyskinesia. I transferred her to the commode using the Sara Stedy, so that lowering her pull-ups was  a little easier. After piddling, no poop, I transferred her back onto her bed where I rolled her back and forth to raise the pull-ups then left her on her right hand side without dyskinesia. At 0630 she had dyskinesia which stopped after I placed a soft pillow between her feet. The pump was set to Day Rate 7.0 from Night Rate of 2.0. At 0730 she only grunted when I tried to wake her. By 0755 she seemed awake enough to move her onto the commode, saying "Yeah" when I suggested doing so. After wheeling the commode into the bathroom I tore off her pullups and removed them into the pot, my normal procedure. I wiped spittle from her chin with a tissue. She had piddled a little but no poop. Her eyes were wide open, staring straight ahead, not responding to my suggestions to poop if possible. By 0815 she began to "wake" a little, responding with "Mmmmm" when I suggested putting her feet on the pedal machine. Once I had done so, needing to put her feet into the slippers glued to the actual pedals, her eyes remained open, but was unresponsive to questions. I put her knitted poncho over her shoulders. Several minutes later I offered her the small drink container in which a cachet of Molaxole was dissolved in about 100ml of water, which she raised to her lips the pushed it away. Then she shut her eyes, her feet continuing to move with the powered pedals, she sitting up right without a suggestion of slumping. At one point she quickly moved her right hand to her ear, then lowered it again. About 0900 I rang a caring help line in Big Smoke and I left a message since I seemed to have called before anyone was in the office. She dribbled spit down her chin. She said "Mmmmm" whenever I asked "Can you talk?" Just before the Wild Dog carer arrived to shower her there were a few round pebbles in the commode pot. Since she was sitting so upright on the commode I decided we should give her a brief shower after which I pressed the emergency button for an ambulance, and before they arrived we dressed her in pull-ups and a nighty. Remembering the day before, I replaced the Duodopa cassette and checked her BP at 124/66 78, oximeter 94%  82 and temperature 36.After the ambulance took her to Emergency I made several phone call then after placing some medication items and information into a small case I drove to Emergency. Needless to say, of the suite of tests completed upon her, none showed any serious anomalies and there were no recommendations other than to arrange a visit to her favourite neurologist in Big Smoke next week. One positive thing to come from this escapade to Emergency was that the attending doctor took me aside to speak about Advanced Care Planning, I sometimes retaliate by asking whether they themselves have put their own house in order, but this time I didn't say that. Anyway, the doctor must have contacted a nurse who handles such advice matters, for she arrived at the bedside, and after appropriate introductory chatting proceeded to give my dearest one of those brief verbal cognitive tests so loved by geriatricians. I had been completely unaware that a person existed in the system to give assistance with finalising documentation after one has ticked all the appropriate  boxes of web based forms listing questions about dialysis, organ donation, when the plug can be pulled etc etc. So I have made an appointment for us to see her this coming Tuesday.

Anyway, last Tuesday I cancelled the Wild Dog care visit scheduled for 1800 and the ambulance returned her home at that time to bed. There is much more that could be described that happened this past week but at this moment, who really gives a damn.

Chapter 596 - Dyskinesia and Other Motions

Written Sunday 16th May

On Friday I discovered that on replacing the Duodopa cassette it was marked "Thur D" meaning "Thursday Day" meaning I had failed to replace the cassette on Thursday night! there was a very small amount of white fluid left so it hadn't quite run out; I calculated that about 99mls had been used. So it was empty. I mark the cassettes so that I know when they were replaced because I confess that I sometimes forget.  During Friday her dyskinesia was almost constant. Before breakfast she passed several balls of poop, after breakfast what I call a "cat turd" indicating its size then no more for the remainder of the day. After denying that she still had tummy pains she admitted that there was an ache on her left side. Having not received any requests to visit the doctor since last week's ultrasound of her stomach, I rang the surgery on Friday to learn that the doctor had marked her file "Normal, no further action",  Apart from the constipation says I. She had itchy sore eyes this same morning for which Optifresh and Tears Again were applied, she put on sunglasses and I closed the curtains. I attached the new FitBit to her right ankle to monitor the dyskinesia. Friday evening she went to bed at 1900, the dyskinesia ceasing as soon as she lay down, began again and faded away when I turned her onto her right hand side.

On Saturday (yesterday) she passed two small pebbles before breakfast, but a short time before the Wild Dog carer arrived to shower her she passed an enormous turd, followed by soft and runny stuff. Several mounds of soft poop were passed later, suggesting that there had been a blockage, hopefully now cleared. No further motions later in the day. Interestingly her day was almost completely dyskinesia free. When I changed from night rate to day rate in the morning I discovered the Morning Dose was locked out, suggesting that during the night she had rested her elbow or some such on the button, activating it. The lock out lasts for about 20 hours and I attempted to initiate a morning dose at times during the day and evening without success, suggesting it was inadvertently activated in the early hours of the morning. The function worked this morning. Last night I discovered that I had not replaced the Exelon 10 patch since 1000 on Thursday so I replaced it at 2015 (I place tape over the patch and write the replacement day and time on it, to hold the patch in place during sweating and showers). How the hell do I expect to get a feel for the causes of the dyskinesia when I keep making such careless errors?

A beautiful clear blue sky with freezing wind day here today, Sunday, so I talked her into walking around to the local restaurant, she in her wheel chair, for lunch, leaving about 1130 and returning about 1430. Her dyskinesias began as soon as we exited our front door and have continued beyond placing her on the loo and then onto the commode (for comfort) although she didn't poop. She now has her feet up watching "Rev" on BritBox. As we arrived at the restaurant people began yelling at me; then a bloke ran up to say she was dragging her left foot on the ground; she actually wasn't although from a distance it may have looked that way. On the way home, on the short street to our village, I need to walk on the roadway because there is no path, a car coming towards us slowed to a crawl and then stopped for us to pass, even though there was sufficient room. Such considerate people simply make the two of us feel abnormal and aggravate her dyskinesia, which hadn't stopped at all during during our outing, except perhaps when she began nodding off just before we left. We sit outside so that she does not feel on show and can readily rest her feet on my lap.

Continued Wednesday 19th May, the following was emailed to a counsellor on 17th May

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What was thought to be infection of [her] Duodopa stoma and treated with ineffective anti-biotics by a GP at a surgery in [town] is not correct and a GP at another surgery prescribed ointments then when [clinic person] at [West Beer] became involved a script for Benacomb was supplied and has been used for two weeks now and the inflammation has reduced.

A referral to Dr at the [Town] Medical Clinic concerning [her] anal prolapse was provided by a GP at a [town]  surgery after showing her a photo of the condition. The appointment made has been postponed until 31st May 2021 due to Dr's temporary absence. I am concerned that Dr may decide to perform a colonoscopy on [her]. I doubt I could cope with the preparation procedures for [her] to have a colonoscopy, having personally experienced the procedure myself. Also advice would be needed on Duodopa usage during all aspects of a colonoscopy procedure,

Until I attended a recent webinar about continence I had not realised that [she] suffered severe constipation. For quite some time Pam's stools have been a collection of loose or sometimes compacted small firm balls that rolled on the bathroom floor if the pan was not in [her] commode/shower chair. She has been taking Benefiber for fibre bulk in fruit juice regularly and irregularly laxative Movicol or Molaxcole, although the latter is given every morning now. Attempts are made to encourage greater fluid intake, especially when [her]leg dyskinesia causes excessive sweating. Each morning [she] has four Hydralyte tables in about 700ml of water to compensate for the sweating.

[Her] leg dyskinesia may continue for hours. Charts from a FitBit device on her right ankle have been shown to others, showing that there is a tendency  for dyskinesia to occur from early afternoon, although any stress will initiate the problem at any time. I have found neither halting the Duodopa pump for say half an hour or giving a bolus dose has any effect on her dyskinesia. I have found that laying [her] on her bed may stop the dyskinesia and usually she needs to lay on her right side for cessation to occur, and less often when on her back or left side. Sometimes cessation is immediate but usually I need to stroke her leg with both hands to gradually reduce the frequency and amplitude of the dyskinesia and ask her to keep her eyes closed and to relax. I suspect medical professionals think my results at stopping [her] sessions of dyskinesia are imaginary. Occasionally my efforts fail and the dyskinesia continues until she falls asleep exhausted. Quite often her legs "kick" for bursts of several minutes so much at say 0200 or 0300 that her "hospital" type bed rattles and wakes me, although she remains asleep and sometimes I turn her, without waking her, to stop the dyskinesia.

Some weeks ago when getting [her] out of the car on a slider board onto her wheelchair she began to fall so I had to lower her as gently as possible onto the garage floor. Some scratches and bruising on [her] legs occurred. I made the decision to only transport [her] on a wheel chair adapted taxi in the future. This will prevent appointments in Sydney for [her] because there is only one provider in [town] capable of day trips out of town and only maybe on one particular day of a week and then only for bookings well in advance. Funding is not an issue since that would come out of [her] Level 4 package even though the cost is about $800 as it was with Wild Dog Care in a conventional car.

[Her] cognitive decline has become much more obvious. [She] got on quite well with a particular carer from [Wild Dog] Care. The carer had frequently showered and dressed [her] of a morning as well as changing [her] and putting her to bed of an evening. In addition this same carer had frequently stayed with [her] for 3 hour respite periods I have on most Friday afternoons. This particular carer resigned from Wild Dog Care last week and when [she] was told, she had no idea who that carer was. [She] is no longer able to crochet or knit (thread becomes a collection of knots) or sew in any way at all. She has OCD problems finding and cleaning marks on floors, cupboards, etc.

[She] has been unable to stand independently or walk for a number of years, initially due to her left foot "drop" so is permanently wheel chair bound.

I am asking our financial advisors for advice as to how to finance Residential Care for either or both of us, after having discussed the details with a Wild Dog Care consultant 2 weeks ago.

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Finished Wednesday 19th May

She says she has had no stomach pains in the last few days. Her bowel motions are more "fluid", hopefully eliminating any blockage on the left hand side where the nurse detected less gurgling than expected some weeks ago. This presents other problems of course; for instance, the sequence of events from getting her up onto the commode is to take her into the bathroom where the overnight incontinence pants and pad are removed, often with a squashed turd in situ, then still seated on the commode, I take her into the lounge room where the pedal machine is mounted on a board. The commode is positioned that she can easily move her legs while her feet are held within an old pair of male slippers glued to the pedals and in the case of her left foot (the "bad" one), elastic tape is used to keep the foot in the left slipper. The pedal machine remote control is held by a loop of cotton tape to one arm of the commode. Because she recently tore off the remote control labelling (she often tears labels of clothing and equipment), we only know the function of one button, START/STOP. The rhythmical movement when pedalling (passively) encourages bowel movements. While she drinks Molaxole laxative powder in a small quantity of water and four Hydralyte tablets in about 700ml of water I prepare her breakfast of a small tub of diced fruit, a baby drink bottle of fruit juice with two heaped spoonsful of Benefiber, a plate of NutriGrain, a slice of toasted bread and melted cheese. Then I move her from the pedals before I transfer her using the Sara Stedy from the commode onto her wheel chair where she sits bare bottomed on a "bluey" disposable sheet while she eats breakfast. On finishing breakfast I transfer her back to the commode where her stoma is cleaned and "toe guards" are taped over her toes to prevent skin damage should dyskinesia occur while she is seated on the commode in the shower and then the first action in dressing her after a shower is to dry her toes and replace the toe guards with socks. Now her more fluid bowel motions result in some bowel action on each physical transfer and into the pot in the commode, and during showering this morning, quite a number of small soft turds fell onto the tiles around the drain whole. The Wild Dog carer helping her shower this morning was cautioning her about female hygiene to avoid UTI's. To date she has not suffered UTI's even though she wears incontinence pants and pads 24x7. The procedures described in this paragraph begin by 0630 and complete by 1000 when the Wild Dog carer leaves after  having showered and dressed her.

Yesterday I had a long discussion with a financial advisor about planning for Residential Care for one or both of us. Please note that such care is not imminent, rather a matter of determining the best approach to financing such care if and when needed. Just one step in what I may have called, in another lifetime, Potential Problem Analysis, and as I said to the advisor yesterday, this will help me sleep at night. Although the advisor was willing to jump straight into the task, she said her "diary was full until July" so I said since Residential Care was not an immediate need then I was quite prepared to wait. Perhaps the cost of this planning may be wasted and Residential Care not needed. One can hope.

Now I need to sit in the sunshine and unwind.

Chapter 595 - Preparations for Decision Making

 I just sent off a request for financial advice about Residential Care for one of us at some future time. I feel much better for having taken another cautious step as I did recently by speaking to a consultant at Wild Dog Carers. My head spins too much trying to solve financial problems that involve government pensions, superannuation, residential care financing and personal assets; just too many simultaneous equations. Even winning Tatts, although most unlikely and easier to catch COVID, would just add another variable. Anyway, I have now committed to paying someone to sort it out for me, yet without making a commitment to implement the matter, something similar to standing at the edge of a cliff then taking a step back.

A couple of days ago I took her for an ultrasound scan on her stomach, hoping to learn what was causing her pain on the left side. As always, the professional avoided saying what was seen, other than commenting that the process was complicated by her dyskinesia and her inability to get out of her wheel chair. He did mention the word "constipation" which I am well aware of and have increased the laxative to two doses each day. I am already regretting doing so but the additional work and care is worth avoiding hospitalisation and other complications.

I had started to think there was an association between bowel movements and dyskinesia. The last few days and nights have had long bouts of dyskinesia yet she has produced piles of thin cat-like turds. This morning the Wild Dog carer said she passed a very large stool at showering time, although I am unsure how big "very large" was. Interestingly, her dyskinesia has been much less today. However, she has been very dull today, subdued, not interested in an audio book or TV. On Friday I bought her a green cactus "trunk" with a red cactus ball grafted  onto the top. Her OCD problems took over and she had removed the cactus from the pot I had bought it in, although it remained in a black plastic container, although perhaps not for much longer if I had not discovered her at it, so I took her outside in her wheel chair and we planted the cactus in the centre of a large shallow bowl I recently bought for some other succulents.

I was very sad to watch her over several days attempting to crochet what may have been intended as a square or a circle coming to nothing. After producing a heap of knots for awhile she was then unable to cast on and crochet a few stitches. Sometime ago she pulled the case off a pillow and began picking at loose threads along one end, eventually revealing the foam chip filling. I tried to discourage her from doing this but she decided she needed to undo the entire seam at one end in order to make repairs. I had to take it from her and some days late I hand sewed the seam shut with a length of wool using a sort of chaff bag stitch. The job looks OK once the pillow case hides is replaced to hide the seam. She is no longer bothered about, not yet anyway.

Chapter 594 - Can Anyone Know?

 I spent 2 hours speaking with the Customer Relations Consultant at Wild Dog on Tuesday 27th April about our financial position and the costs involved in a single room with en-suite at their establishment. I probably revealed too much detail about our funds but what the hell, the whole exercise of funding Residential Care is controlled by rules laid down by the government manipulated by strategies to suit each case. I have attended three, perhaps four, presentations given by CentreLink experts, one of which stated that he must have sat through maybe ten such presentations before he fully understood the subject. In our case, the funding will be from our Self Managed Superannuation Fund which contains a large proportion of market valued investments and pays us a pension the amount of which is set at or above a yearly determined minimum percentage of the Fund value, as set by the government. Without using confusing buzz words about which I have a muddy understanding, Residential Care can be funded by a lump sum refundable "loan", a daily non-refundable fee or a combination of the two. And I almost forgot, a daily fee to fund those little extras that the living need to make the act of living worthwhile, beginning with a single room with en-suite (who would wish otherwise, coping with the noises, gaseous, fluid and solid emanations of strangers?). In our case our Fund is too small to fund a lump sum, therefore our estate will decrease with time as daily fees are paid. Tough on expectant heirs. While one of us remains living in the family home (in our case  leased) the value of the home is not considered an asset.  Our government funded part Age Pension Age Pensions will continue. I vaguely see that a degree of strategic thinking is needed to balance  the needs of each partner, one outside, the other inside the "Institution" (there, I said the word) with pensions and assets. And note that what I have written above assumes that one of us, either me or her, blissfully remains in a state of Independent Living. I have arrived at about my "Use by Date" although I'm unsure whether the Life Expectancy figures refer to a male born today or someone born in the year I was. Should I be concerned? Not much I can do about it, as evidenced by our demised house cleaner, a brother-in-law, and a 2nd cousin each of which departed without any fan fare.

A few mornings ago as I was drying parts of my anatomy after showering, a mouse decided to escape across my feet out the bathroom door; the sight may have been too much for the little thing. After dressing, and without telling her about the small animal wishing to be our tenant now that the weather has turned cold, I placed 4 rodent baits in out-of-the-way positions in the house, one being beneath the fridge. Some hours later she became concerned when she thought she saw the mouse. I told her I had laid baits and the mouse would soon be gone. I am yet to find its final resting place. Late that day when I packed the dish washer I noticed that the door on the detergent dispenser was shut and wondering whether the block of detergent may have become stuck on the previous was cycle, although I had not noticed that any plates etc had been dirty or smeared, I popped open the little door. Inside was the block of wax of the bait I had tossed beneath the fridge. When I first asked, she denied knowing anything about it, then told me she found the block of bait on the floor and since it was the correct size and thinking "dish washer detergent", had fitted it into the dispenser. I presume the mouse may have dragged the bait out from beneath the fridge. I try not to contemplate the stomach pains we may have experienced.

For about 2 days she pulled threads from a square of loosely woven fabric, making a design of crossed lines (I suppose there is a name for doing this) until all that was left were the removed threads in a pile. She enjoys folding the Coles grocery bags into small squares held in piles by rubber bands. The piles are given to one of the Wild Dog Carers who passes them onto a woman who has an incontinent daughter whose pads and pants are placed in the Coles bags. Back here at our place, I buy rolls of thin plastic bags for the same purpose. A Wild Dog carer showed her how to fold the Coles bags into triangles and using the handles on the bags to hold the triangles together without unfolding. She tried to emulate the method and failed so returned to her own method. One night she asked for a crochet hook and a ball of wool to make some circles; she blamed the wool for being "knotty" for her failure. She has lost interest in listening to book readings, perhaps because any I have found online from the library, although classified as "romance" are rather explicit, course and violent; I must search again for her preferred Mills & Boon stories. Today I found her with her wheelchair parked in the kitchen alcove with a small sharp serrated knife in hand about to do damage to the joins in the wooden flooring; she looked guilty when I discovered her.

The clinic nurse at West Beer sent a script for Kenacomb  ointment to be applied to the granulation of the stoma and Bepanthen ointment to the excoriated skin around the stoma. Although sent by Express Post, Australia Post took 7 days to deliver the envelope. There seems to have been a slight improvement since beginning this treatment from last Thursday night, twice each day.

I have decided to cancel the appointment for her to see a specialist about her anal prolapse. Regular laxative and fibre products are maintaining soft turds, although often there are marbles again but not rabbit sized firm ones that tend to bounce on the floor.

Some nights I am frequently woken by her leg dyskinesias rattling her bed. Even though the neurologist told me that a person is awake when dyskinesia occurs he is clearly wrong, because I can often roll her onto her back or to one side or the other without her eyes opening or speaking to me while dyskinesia is in full force until positioned comfortable and maybe rubbing of her legs.

I have unfortunately formed the habit of waking between 0000 and 0200 whether or not she has dyskinesia, trying to fruitlessly do mindfulness exercises, reading, listening to Radio National or audio ebooks with little success. Ruminating about her condition, appointments, jobs to do, items to buy etc etc all keep me awake. My Lumosity scores have plummeted, I find I forget things - for instance some days ago my bunch of keys fell apart; I could not remember what had held the car key, 3 or 4 house keys, bank dongle, garage door remote opener, letter box key and nail clippers together in a jumble and whatever had done so had left no traces of its construction. After several days I threaded the lot together with a tie wrap; perhaps that was what was originally used, I have no idea. Similar forgotten things have happened I am sure.

I see no reason to "put her away". For my health perhaps yet in the past when away for work reasons I became lonely and depressed quite quickly, perhaps living in hotel rooms causes that. All I need is a transfer device, a powered version of a Sara Stedy with seat pads so that transferring her is a one man job without having to strain. My arms continue to exhibit RSI like problems and sometimes she complains of shoulder pain. What a shame that the professionals failed to notice the deteriorating condition of her left foot soon enough even though I kept bringing it the the attention of her then neurologist.

I have been writing this note on and off during the day. Now with the time at 1940 I need to resist the temptation to sleep even though my mental state needs me to shut down and sleep at this early hour. I notice I keep making typos so hopefully all have been corrected. Perhaps I will search for her preferred type of love story. Best I check on her first.