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?