Chapter 630 - The Carnival is Over

 She died yesterday at 2010. I was asleep seated in the recliner chair beside her bed in a palliative care room in the new local base hospital.

Not wishing to re-live the days since my last post I will only briefly describe my experience of her final days.

On Sunday last I pressed our alarm button when she began waving arms and kicking legs and making choking noises and from my description it was thought she was having a cardiac arrest so 5 nurses and an ambulance man arrived in two vehicles in a very short short time. She wasn't in cardiac arrest but she was taken to emergency anyway. Before I left home for the hospital a couple of hours later a doctor phoned to ask about my wishes regarding CPR  and admission for an overnight stay before I left for the hospital. Minimal panic on my part this time and family had called in and had been present when she was taken away. When I arrived at the hospital I signed the usual paper work about assigning the hospital rights to claim on her medical fund. The doctor appeared and discussed "making her comfortable". After leaving and later returning to the hospital I found her in Room 26 on the top floor. 

On Monday I returned to the hospital at 0600 to change her pump, as I had the night before. After that the pump changes were left for the nurses to do. Mid-afternoon she was alert, hallucinating, weaving her hands in mid-air above herself and speaking in a thick tongued voice which I was unable to understand. About to leave her for awhile, I looked down on her face and said "I love you", to which she replied "I love you" in a clear distinct voice and the hint of a smile, or was that my imagination? They were the last distinct words we spoke to each other.

Yesterday I returned to her bedside from 0830. Mid-morning the Chaplain came to the room and when I referred to the old hospital building where Palliative Care beds were I learned that they were no longer there but here in the new hospital building and Room 26 was one of those rooms. No one had told me, partly I suppose because it had ben a long weekend with reduced staff levels. We had a meaningful chat in the "Carer's Room" where I learned the tea and coffee facilities were to be found. Then later I left to find some lunch and on returning had a long and meaningful talk with the senior Palliative Care nurse. She agreed that it was a good idea for me to return to Room 26 to spend the night there. Which I did, attired in an old track suit, with a few necessities to help me through the night, asleep on a recliner which was more attractive to me that a narrow firm couch also in the room. She was asleep as I settled down to watch the news and send myself to sleep by reading a good book; instead I slept, waking sometime later to find her asleep for evermore. I kissed her forehead then went to find the nurses.

So her progression that began in 1991 has ended, at long last.

Chapter 629 - The Path is Dipping Again

 We reached the end of our COVID isolation last Thursday none the worse; life was expected to return to normal, ours that is not yours. Saturday was a better than normal day, at least in some respects. Her fingers were not curling into fists which has been happening lately. At 0730 she said "I'm dying for a drink" so I gave her 100ml of water then 10 minutes late she wanted more, so another 200ml. She asked to eat her small tub of diced apricots without assistance, then asked for melted cheese on toast. So I prepared the toast without crusts for her, but "it wouldn't go down", meaning she was unable to swallow the bolus formed in her mouth.

A short time later I noticed her hands were curling into fists, the right more than the left. She wanted a cold fizzy drink while I went to buy some mugs with handles, the type suitable for young children. On my return she was humming; a good sign I thought! I put 200ml of mango smoothie in one of the new mugs; disappointed to see her difficulty holding the handles. A short time later she dropped the mug into her lap, and even though the drinking spout is reasonably small the majority of the smoothie was in her lap, seated in her wheel chair, before it dribbled onto the floor.

After the mess was cleaned she wanted to sew so I made space in her sewing room and wheeled her in there. She was soon "speaking" to her sister about whether she wanted some of her fabrics. Then later as she folded a piece of fabric she said "I would not mind some water"; most unusual, normally she does not ask for fluids. That evening I gave her a slice of chocolate cake and ice cream for sweets. Shortly afterwards I found it to be a crumbling sticky mess to be cleaned from her lap, wheel chair cushion and the floor. Later. as I put her to bed, she again asked for more water to drink as well as some wool and a crochet needle with which she failed to even cast on one stitch.

A very different day was  Sunday. At 0310 she was awake, she was "Just nice. Is it time to get up yet?" Her Duodopa pump was beeping with a high pressure alarm at 0615, the tubing had kinked and the pump only required to be repositioned to clear the alarm. It was not possible to say how long the alarm had lasted. At 0820 as I slid her onto the commode she belched then vomited green bile and shortly afterwards a yellowish phlegm. She was unable to accept a sip of water. I returned her to bed and replaced her wrap around pants. Her vital signs were 36.4C, 121/76 and 86, and 96% oxygen and 88. I rang a COVID 1800 number and spoke to a nurse who suggested the problem sounded like reflux and to call back should the symptoms continue. At 1035 she was breathing deeply and slowly and asked for water. By 1145 she felt better so I showered her. She drank 100ml of water containing one sachet of Movicol at 1245 before I gave her three teaspoons of SPC diced apricot which was coughed back up. Fifteen minutes later she coughed up a blob of clear, thick phlegm then there was thick clear strings of snot on her fingers and shortly after her vital signs were 38.2C, 105/79 90, and 91% oxygen and 90. Her temperature remained between 37.1 and 38.5 for the next hour and she continued to dribble snot and drooled phlegm. About 1500 I pressed our emergency alarm, gave my concerns to the operator who alerted the ambulance service who rang and asked the details of our emergency. A Paramedic was dispatched and at our place in about 15 minutes. A member of our village management arrived about the same time. The Paramedic used one of our RAT's which indicated positive, took a blood test and ear canal temperature which was 39.1C. Meanwhile the patient dribbled snot and spit. The Paramedic said all that need to be done at the moment was Panadol every 4 hours and regular Hydralyte drinks so we decided, bearing in mind the complications with Duodopa pumps and I would be unable to enter the hospital, that she should remain at home.. By 1800 she was 37.6C and no longer dribbling snot or drooling and at 2200 36.2C.

Then through the dark hours of Monday morning while attending to her and having her drink soluble Panadol, she was often in a cataleptic state (quoting from "Silas Marner"), assuming that may be due to my not having given her a Symmetrel capsule the day before, and one was not given to her until 1300, because the capsule is very small and could easily enter her breathing passages. After her morning shower she asked to return to bed, remaining there until lunch time. She was unable to swallow a small piece of crumpet she wanted for breakfast. At times she needed to clear her mouth of spit. 

I suppose we continue in a state of isolation until this coming Easter Sunday. No longer I hope, for some short time ago someone close suggested I seek assistance from palliative care. After searching in circles for contact details I rang our local Community Health, was given an 1800 number and left my details, not expecting a rapid response. Not so, because a nice person responded, checked our details and made an appointment to visit us next Wednesday 20th April. I am glad the appointment was not made for yesterday; perhaps by next week she may be better able to cope with visitors.

She is unable to take solid foods since this experience. I need to coerce her to even take Sustagen and whey products as thick fluids because she seems to tire of taking a mouthful at a time from the spout of small beakers then swallowing. Her dyskinesia problems may have lessened but her hallucination problems have certainly increased and of a less benign nature.

Chapter 628 - Catching Up

A friend on reading my last post, when I referred to what I call Zombie mode, responded by email "I should have twigged to this possibility some time ago. Google:  Catalepsy,  Wikipedia has a brief article and it mentions PWP. If it isn’t this it might take you elsewhere." and then followed up with "I forgot to mention, I became familiar with the condition when reading Silas Marner in High School 60 years ago. (pity I can’t remember all the other stuff)". I myself read most of George Elliott's novels way back in the early '60's but missed reading her (yes, she was an authoress) "Silas Marner". And, perhaps, had I read the novel I may have answered my own question about Zombie Mode. Let me quote from Chapter 1 of "Silas Marner", a novel written in 1861:

......Jem Rodney, the mole-catcher, averred that one evening as he was returning homeward, he saw Silas Marner leaning against a stile with a heavy bag on his back, instead of resting the bag on the stile as a man in his senses would have done; and that, on coming up to him. he saw that Marner's eyes were set like a dead man's, and he spoke to him, and shook him, and his limbs were stiff, and his hands clutched the bag as if they'd been made of iron; but just as he had made up his mind that the weaver was dead, he came all right again, like, as you might say, in the twinkly of an eye, and said "Good-night", and walked off.

....... Silas's cataleptic fit occurred during the prayer-meeting.....

Although I have yet to read beyond Chapter 1, that short excerpt describes fairly accurately what I observe when she enters her trance-like state when seated on her commode. After some Googling, I replied to my friend "I am finding there are numerous similar disabilities each named cataxxxxxxx where xxxx can be substituted with -atonia, -lepsy, -plexy, etc etc and if I had ever studied Greek or Latin I'm sure all these variations would be meaningful and memorable without having to plough through obscure learned papers." So now I am reasonably content, and although unable to exactly name her condition, I can let it go as a problem and at leisure further research it or, perhaps, one day soon, query someone of the medical profession.

On Monday 28th March, I came down with my annual Man 'Flu (although last year it ignored me) so I tested myself with a RAT which returned a negative result, as did similar tests on Tuesday and Wednesday then on Thursday my result was positive. On testing her, she was positive too. I took myself to a drive though PCR test station and the result that night was positive. I did not inconvenience her by organising a wheel chair friendly cab to take her for a PCR test and I doubt the cabbie would have been thrilled either. Although I warned Wild Dog Care last Monday, I reaffirmed my situation on Thursday. Since then, our lifestyle has not changed because our lives are similar to that of a celibate monk living in a cave. Respite sessions for last Friday and also tomorrow were cancelled. I have a document from NSW Health  saying my period of self isolation completes next Wednesday. During my isolation period I have felt "better" than when I assumed I had Man Flu' a week ago; except my left shoulder and my left arm were painful for a week and that I thought was due to physical stress of moving her to and from bed (although heart problems came to mind) and yesterday my right fore arm was also very painful. She has frequently needed to return to bed during the day and is having increasing difficulty eating even soft foods so much so I'm now giving her Sustagen in milk and often Milo the last few days. Several times she dry retched after sipping fluids. PD progression or Covid side effects?

Chapter 627- A Rose by Any Other Name

I have written in posts past about the occurrence of what I have called "Zombie Mode" in my PWP. Remember I quoted the doctor on duty at our local Emergency who said in answer to my question "What will I do next time this happens?" to which he answered "Wait a little longer" and the notes scribbled on a sheaf of results of tests performed on her after someone queried the hallowed halls of West Beer suggesting to me, at least, that the elderly make mistakes in handling a Duodopa pump?

I have often searched on-line for professional descriptions and a professional title to Zombie Mode, when my PWP stops all conscious activity, eyes wide open staring, sitting upright in wheel chair or commode, without dyskinesia, or any other movement, and her BP and oxygen level OK. An Allied Health Professional suggested some time ago that the symptom may be "Petite Mal" although such tend to be of short duration, observed in children without suggestions that female PWP's in their late 70's suffer the problem.

By sheer good luck while Googling combinations of suitable words I stumbled upon and read a few descriptive phrases at     https://connect.mayoclinic.org/discussion/parkinsons-unresponsive-episodes     where I read all the posts to learn that there are many carers out there puzzling about "seizures" lacking a meaningful name. Has anyone in either a white coat or a three piece suit studied these "episodes"? Perhaps if I Google often and long enough  I may discover how to deal with my loved one switching off into a trance like state for a few minutes or for an hour or two. And with repetition, such an event no longer scares the hell out of me. But one day will she not come out of it?

This morning I answered a query within an email  with some raw details (usually I don't do that) and received, in part, the following "Poor lady has had a long battle with illness as I remember she was not a ‘well woman’ when we all first met back somewhere around 2007. That time frame seems an eon in itself. It must be so sad for you to watch, I just cannot imagine!!!!"

      

Chapter 626 - Some Days Are Diamond; the Remainder Are Shit

 I just noticed that I mis-numbered my last 3 or 4 few chapter numberings; perhaps I'm losing things myself. Well, at my age such is to be expected. Like this morning, I returned her to bed at 0820 after getting her up and onto the commode then onto the pedals half an hour earlier. Now at 1120 she remains in bed although a few minutes ago I had to reposition her feet away from the padded side panel of her bed to stop her dyskinetic kicking; for any restrictions placed on her feet, eg tight sheets or the bed's side panel initiate the kicking action even when she appears asleep.

Anyway, at 1000 the Wild Dog carer arrived to give my PWP her usual daily shower. I met her at the door  so that she in bed would not wake. I will shower her later. When I described the current situation at our place the carer told me of her recent experience at home with her parents in Big Smoke; her mother has dementia, her father says the mother must enter a nursing home once he is called upon to clean up a "mess"; i.e. shit. The carer thinks I am doing a fantastic job and that was my cue to therapeutically waffle (therapeutic for me that is) for 20 minutes or so, ending in me following the carer to her car as she exceeded her allotted 30 minutes here. It is just so good to speak to a sympathetic ear, or to be one myself, without becoming a bore. Yet there is never sufficient time available and for the likes of myself I tend to elaborate with side issues, never reaching the conclusion to my original statement. For instance, take this morning, I was attempting to describe the outcome of bowel movements here yesterday, yet never came to my intended conclusion.

Last Sunday was one of those "diamond" days, although only relative within our domestic context these days. Showered by a carer at 1000, she asked for porridge for breakfast. Then I left for the chemist to order her next batch of Duodopa and collect a month's script of Symmetrel. The chemist did nt have the Symmetrel script so I returned home to search for it. Finding the script, as I was about to leave home again I suggested bringing take-away lunch back for her; she asked for fish and chips. This surprised me; she had lost interest in such lunches. Anyway, she ate most of the larger piece of fish and many of the chips. (I carefully reheated the second piece of fish and the remaining chips the next day but she hardly touched it). Throughout the day and into the evening she watched TV (well, the TV was on showing items that were acceptable to her). Around 2030 she had a "meal" of mango smotthie and one or two Tim Tams. By 2130 she was in bed listening to an audio book. During the day and evening there were a number of short duration dyskinetic outbursts.

The following day, Monday, began normally (which I won't bother to describe) but after 0900 when I noted "has done a medium pile of soft poop. Very good!! To breakfast, is docile, legs stiff, dyskinesia" then "0925 Legs ache, dyskinesia, put back to bed, no pants just on a greenie". At 0935 I gave her a bolus dose from the pump hoping to relax her legs and by 0937 she was asleep and no dyskinesia. At 1000 the Wild Dog office rang to say that due to flood waters that morning's carer was running 20 minutes late. We decided not to cancel the service so the showering took place and after the usual stoma maintenance she was in her wheel chair for breakfast at 1100. From then on dyskinesia began and continued with hardly a break. Her daily Symmetrel tablet had no effect. She had several bowel motions during the day. She difficulty swalling any of the fish and chips reheated (carefully) from the previous day, accepted a bowl of pumpkin soup of which she ate some when I fed her then a little of a small custard tart and ice cream. After sitting on the commode, cleaning her teeth, wiping her down, for she was very sweaty, with a damp towel then I dressed her for bed. Dyskinesia stopped as soon as she lay on her right hand side. She listened to a book reading. By 2200 her dyskinesia was strong in her legs. She asked to be rolled onto her back and the room fans to be turned off. By 2300 the dyskinesia had reduced to finer rapid movements of her legs. She thought she could go to sleep. A little after midnight she was still awake, the dyskinesia mild. Rubbing her legs gave no relief to the dyskinesia. I returned to my bed. At 0320 I found her still awake, saying "I've been in bed too long" yet she did not wish to get up. At 0550 I found her awake, holding up the pump which was stopped. Had she stopped it? She didn't know. I later weighed that partially used cassette and compared it to the weight of the one used the previous night to find the weights differed by only 0.2 gm so the pump must have stopped when she had held it up with her thumbs pressing on the buttons of the pump. At 0700 she needed the commode, doing only a small piddle and a small lump of poop. I cleaned her bottom as I returned her to bed and to sleep. At 0830 her toes on her left foot was touching the side panel of the bed and when I moved her legs into the middle of the bed and rubbed her left leg the dyskinesia stopped. At 0930 while seated on the commode again she drank about 100mL of water with a Movicol and about 600mL of flavoured water containing 2 Hydralyte tablets. Just before the carer arrived for showering at 1000 she hallucinated that gardening work was happening across the street. The day turned out to be average for her of dyskinesia, commode stops and unwatched TV. A little after 2100 she told me her sister was in the wardrobe. I checked on her several times during the early hours of Wednesday morning to find her awake. At 0330 she tried to describe a big machine she said I was driving.

Yesterday she passed several large piles of poop while seated on the commode. Then a quantity of what looked like pumpkin soup, as if some sort of blockage had cleared. She has done little poop since then.

Last night she tried to introduce me to someone who she thought was standing behind her. telling the person she could speak to me. She sees crowds of people milling around. Asks whether her sisters have gone. I try to note such comments but in the early hours I am sleepy, dazed and confused. What she says is meaningful to her, I try not to contradict her, to tell there are no other people in our house, that what she sees is in her imagination, that what she sees is all part of her dream.

This morning, beginning at 0140 and finishing at 0420, I wrote 7 notes, some of which make little sense. An example, at 0215 I heard her calling, she told me there was a "crowd" and that "I have lost all her parcels"; was she shopping?? At 0245 I placed a chair beside her bed for me to sit on and someone was told to "walk past him". I was told to "go stop them". At 0420 I went to bed to sleep properly. Today was a less stressful day.

Today, since having breakfast around lunch tome she has been dyskinesia free, but is docile and not interested in anything beyond the imaginary needle and thread she stitches to repair her clothing, the apron I place on her to limit the spread of spilled food stuffs.

Today was tolerable, what brings tonight and tomorrow? Diamond or crap?

Chapter 625 - Matters of Concern

On her behalf I attended a non-urgent request to see the GP after the  recent annual check-up for her; there was little point stressing her. As it was I had to take her for a second visit to pathology because one vial of blood had been "lost". Two issues were remarkable; her B12 level was high but she had recently had her routine 4 monthly B12 injection and her albumin/creatinine ratio was high at 6.1 when the spec is <3.5, so another urine test was collected, for which I was given a small adhesive attachable collection bag but instead I used a length of card to which I attached the specimen container. No further results yet. This brings memories of 2004 when part of her right kidney was removed.

Last Thursday she saw a geriatrician after three deferred appointment times. The purpose of the appointment was for her to be assessed for a cognitive decline supplement to her Level 4 Home Care Package; not for obtaining more funds but for assistance finding someone able to give her appropriate mental stimulation. The geriatrician asked questions of me, after asking her whether that was OK by her. She must have nodded agreement. I expected him to give her the appropriate mental tests; you know, count backwards by seven, I will say 3 words ...., what is the date etc etc. He didn't, just asked me about her condition and health. So I handed him a summary of her condition, something that I spent a day writing her history and current status in list form. He quickly read it. I showed him the application form AC014 a Care Provider  needs to complete to make an application.; he pulled up what may have been the PAS-CIS questionnaire on his screen, wrote a score of 8 in a box on the form and the date, said to me I would need to fill in the declaration over the page and he would write a report to the GP. He also said he had never filled such a form in before. He obviously hadn't, because it is to be completed by the Care Provider, neither by him nor me. He was kind enough to push her wheel chair back to reception. I will wait to see his report to the GP. I had expected some advice; the closest to that was a question whether Residential Care had been considered.

The geriatrician was interested whether her hallucinations were fearful or not. I mentioned little girls with flowers, her sisters, people out on the street. Nothing threatening. Nothing frightening. She was still in bed this morning at 0740 when thought I heard a voice calling out. I went to her bedroom. As I entered she yelled "Mum!" and when I queried what she said, she became hesitant, looking puzzled, not saying anything. I got her up for the day. At 0930  not long before a carer came to shower her she said something about a "station"; I asked her to repeat it several times. I then realised she was saying "Everything is devastation". When I asked to clarify, she said "Everything out there, the street, the yards, all devastation". I presume she has seen too much TV footage about the ongoing flood situation along the east coast and the bombing scenes from Ukraine. I found Andre Rieu clips on You Tube and these have been playing ever since. I'm unsure how much notice she is taking of the performances.

Yesterday while on 3 hour respite I bought her a couple of more comfortable bras and a night dress at Target. While there I wandered over to the toy section where I found a peg board version of Chinese checkers and  set of wooden jig saw puzzles, the most complicated having 20 pieces. We tried the checkers this morning and I just gave her the 20 piece jig saw. I restarted the respite of 3 hours on Friday afternoons just yesterday, but how much good it is for her is anybody's guess. I think she spent part of the time 

asleep, the carer folded some washing for me and there was something dramatic (not to her taste) playing on the TV when I returned home.

A little while ago she agreed to being pushed around our village street for an "outing" but I now hear rain on the roof.

All too cruel and forgotten about.

Chapter 624 - Another Issue with the Duodopa Pump

I sent a note to the West Beer nurse asking whether other Duodopa patients accidentally activate the buttons on their pumps, and whether there is a simple way of prevention becuase my piece of Tupperware is not an ideal solution for the problem.

About 1930 last night she asked for the loo, which now means the commode. As I set up the sling lifter for the transfer from wheel chair to commode I discovered Duodopa solution on her left leg and the "bluey" mattress protector she sits on in the wheel chair. The threaded coupling between the cassette tubing and the stoma fitting was cross thread allowing the solution to escape. I had last handled  the coupling when I routinely replaced the cassette at 1600 so I assumed I was at fault, even though this was the first time such a problem had occurred in six (?) years. Then she told me she had  "tightened" the coupling and thought the leak had stopped. She had not called me because I was on the phone at the time. I now wonder whether she had undone the coupling herself then attempted to reconnect it. She remained silent about that. I will ensure the coupling is screwed together more tightly in future.

When I checked on her at 0600 this morning I found her bed light on and she was uncovered on the bed and not even a pillow beneath her head. All such things had been tipped over the side rail on the far-side of her bed. When asked why she had done that she replied "I was trying to get away" but was unable to say from what.

I have started giving her one teaspoon of benefiber again in her breakfast fruit juice because her poop is now only soft and very small pieces.