Chapter 375 - A Cock-up Resolved

Yesterday morning around 0900 I rang the chemist; there had been no FAX's from the doctor. I drove to the surgery, confronted by a grumpy receptionist. She had to ring the doctor in his room to ask him to print the modified instructions for the blister packs. She gave me the sheet of paper and when I went to place tick marks upon it where there was agreement with my schedule she became excited and said I mustn't mark it, "So print me another then" I said, and in the stressful moments I confirmed the details were correct. He had even included non-PD items like Macrogol, hardly suitable for a blister pack, but at least the Wild Dog people will be unable to deny her this, and other over the counter items like calcium, magnesium and vitamin C (except I don't believe she has been given these items yet, today will tell). Then the receptionist placed the chemist's copy in a sealed envelope for me to take to the chemist, but when she said she was about to FAX the document to the chemist as well I asked "why?", she replied "Well, that [referring to the sealed envelope] can be modified before you get to the chemist" then said something about it being the law.

FAX's must be slow these days because I arrived at the chemist before any FAX did. Excitedly handing the envelope to the chemist staff I realised I did not have the container of incorrectly filled blister packs or leftover medications with me, of course the chemist didn't, the damn things were locked away at Wild Dog. Trying to obey road laws, out I went to Wild Dog, found the Nurses' Station, without identifying myself, asked for and was given the container of pills, returned to the chemists where I mentioned my PWP had no meds for 1400 (her due dose time) it then being about 1100. Then home to collect some necessaries for my PWP and a chicken sandwich. Back down at the shopping centre I was parking the car when the chemist rang me that the blister packs were complete. I collected the blister packs (only 4 this time), bought a container of chewable vitamin C then had a coffee while I verified the contents of the blister packs were correct. Returned to Wild Dog at 1345, had my PWP check the blister packs as correct, buzzed the nurse to take the blister packs (I retained the bottles of excess pills in the car as a safety measure) to wherever such are locked away, pointing out that the next dose of meds were due in a few minutes time at 1400. Sot on, someone else returned shortly after with a little paper cup containing the correct dose. I went home, returning later to change over the Apo pump and syringe.

I later returned home to bring her own commode to her to use. Her room has a commode, an non-adjustable tall one so her feet do not touch the floor, and to top it off, had been custom made for someone with only one leg. Wild Dog do not have a replacement for her. She has her wheel chair with her but wishes to walk a little, so this afternoon I will take her collapsible walker in to her, plus satin draw sheets and possible other stuff should I remember what they are.

I needed to read for awhile from 0100 this morning then woke at 0645 feeling refreshed. Now about 0930 I have returned to feeling normally tired and fuzzy headed. Time will tell. Although I have left messages on her mobile, she is yet to call me today.

Chapter 374 - A Cock-up

Here I am at 0600, awake since 0400, unable to return to sleep, even though I have minimal responsibilities for the next fortnight while she is in respite. And therein lays a tale.

Somewhen between Xmas and New year I rang the coordinator  who handles the home care at Wild Dog, asking what we need to do to organise a week's respite. You know the advice easily given that "carers" need to take care of them selves? Well, I had decided to accept the advice. I am unable to shake off my feeling of tiredness, I am more irritable and short with her, I suspect I stumble a little (although no one has noticed), I am not relaxed while driving and have reservations parking in busy car parks and prefer one in a side street, my Lumosity scores are dropping but not by much. Possibly all due to lack of sleep and stress. The coordinator said she would ask the responsible person to call me. No one called, but then it was the slack holiday season after all. So on 7th January I sent the same co-ordinator an email; she replied that she had sent an email with my contact details and ACAT assessment to the responsible person, mentioning the name. Still no response by the 9th say I rang Wild Dog's number which was politely answered by the person I needed to speak to. Knowledge of any messages from the other co-ordinator was denied. After I described what we needed the response was "Only shared accommodation is available" to which I replied "NO!"; to which I was asked for my contact number while management was contacted for a decision about a single room. Puzzled me that the person needed no other information from me, causing me to believe she already knew my PWP's situation. So much for not getting the message. Shortly after I was called back. A single room was available from next Tuesday (that is yesterday as I write). Then I mentioned the Apo pump and self medication of Parky Pills. Another call back; senior staff knew all about pumps and meds needed to be in blister packs, I protested but we would sort it out on the day.

By Sunday I decided that blister packs may not be a bad thing. So I called into the chemist asking that her meds as per my schedule (you know, the small spread sheet I attach to some of these posts) be packaged into a blister pack for two weeks to pacify the Wild Dog management. No problems I was told EXCEPT that directions to say what was in the pack had to be authorised by the doctor, otherwise Wild Dog will not accept it. So I needed to have the doctor FAX the schedule to the chemist before they made the blister packs. The chemist also said that due to the number of meds and the number of doses they would need to join several blister pack sheets together. I left a schedule with the chemist.

Monday morning, a little after 0900, I gave a copy of the schedule (in which the PD meds were highlighted in red),  on which I had added instructions for the doctor that my PWP was going into respite, to the doctor's receptionist. Then I continued to the chemist, telling them what was in train, leaving all her meds with them (since I am a pessimist, she had made up sets of meds for all of Monday and Tuesday) and buying some op-sites for the Apo infusions and ointment for the old infusion sites. The chemist said they would ring the doctor's surgery by lunchtime. Mid-morning I took  completed admission paper work to Wild Dog, I was told that staff had determined that I could administer the Apo, I pleased them that blister packs were being prepared for her conventional PD pills.

Mid-afternoon Monday I contacted the chemist; they had called the doctor's many times but no FAX. I rang the doctor, the receptionist said she had sent the FAX "15 minutes ago"; rang back the chemist, no FAX even after double checking; rang back the doctor's receptionist who then resent the FAX; rang back the chemist - FAX just received. Time was then about 1630, chemist there until 1830, I said I will collect at 1800 (that way I was sure of no delivery foul-ups). At 1800 I collected some 6 sheets of blister pack, including the doctor's FAX to the chemist.

At home she looked at the blister packs, declaring "these are all wrong". Included were doses of Sifrol (she was weaned off the stuff during February - March if I recall correctly, included were doses of Sinemet which had been reduced, also Motilium. As I later figured out, the doctor had simply FAX'ed to the chemist the list of current scripts, in use or not, that he had listed on his system  for her. I thought I was ensuring that neurologists, GP's, hospitals and associated medical staff were all being kept on the same page about her current medications. Obviously not, which explains why sometimes I need to say "that's for your records" when a medical professional goes to hand me back the sheet of paper. If she was a dippy demented old lady and had  gone to Wild Dog with those packs without argument she would have been fed pills like a battery hen until she was over medicated. I wonder how often that happens?

So yesterday, Tuesday, I took her to Wild Dog a little after 1000, about the usual time I take her for day respite. We were escorted to her room where we waited for nursing staff. I told them the blister packs were incorrect and she will self medicate as at home, putting pills in labelled containers for each day. Too difficult for the two nurses to handle; a more senior one called, officious, "Must be in a blister pack" she says. I point out that were she to take the pills in the packs made up by the chemist then she will be over medicated. She needed to consult with management; I heatedly stated that if this was not sorted quickly then we were going home. Management person arrives, takes a higher stance "Leave it with us, we will contact the doctor to correct the schedule and organise for the medications to return to the chemist". I am slightly pacified. I tell them I will return about 1600 to change the pump; no one shows much interest; I can do it any time it suits me. They leave us, I help her unpack a little, then take her up to the day respite room for lunch.

I went home, prepared an Apo syringe leaving it in the fridge, had some lunch then down the street for a coffee and checked with the chemist. I asked to speak to the chemist involved in this saga and he passed me to another who was now handling the matter (did I detect some animosity?). She, a chemist I had not seen before, told me that no FAX had been received from doctor. Well, I thought still early days, or hours.

Back home to collect the made up Apo syringe, spares and accessories packed into the ANSSR back pack and off to Wild Dog by 1600. The Day Respite people said she was feeling weary so had returned to her room. The Day Respite manager wished to speak to me about her attending Day Respite each day she was there. I said yes to provide her with company and activities; also discussed and agreed to discounted fees during her residence. The doctor rang me to verify her meds schedule; can't those ranked by society above engineers and technicians understand a simple spread sheet?  Here am I, a retired aged buffoon, explaining to a doctor who will send a formal message to the chemist who will neatly package pills in a form acceptable to Wild Dog so that my wife can swallow them at times defined by ourselves? Is this comedy or actual farce?

I found her there sitting quietly. Sweating like a pig. Although the A/C control was set at 18C the window of the room was open. I was soon sweating as well, on this warm humid afternoon. If at home the air conditioner set to 21C would have kept her reasonably dry. I drew the curtains and closed the door while I changed the Apo pump and syringe. No staff disturbed us.

Later, after 1700 as I was leaving the Management Person saw me, called me into her office to speak with a senior RN. They had contacted the doctor and the chemist who said at that late hour nothing could be done since their pill packaging person had left for the day. It seems Wild Dog management were in a bit of a quandary. The RN said she assumed I thought she was being pedantic about the medications; I said "Yes, you are". She asked whether my PWP usually self medicates and whether under the circumstances, if specimen bottles were provided, we could make up the medication batches to tide us over until the blister pack fiasco (my word) can be resolved. I said yes, pointing out that we had come prepared for this situation with batches of meds for 1000, 1400, 1800 and 2200, which my PWP had been taking since arriving at 1000 this morning.

So I went with the RN back to the room, some labelled specimen jars were given to us. The RN left us to conduct our sordid activities unobserved, asking that either she or a senior shift nurse be called to collect the container of meds and blister packs when we were finished. I complied with her wishes and left for home.

A day of learning experiences. My Potential Problem Analysis skills (the unwashed refer to such as pessimism) need to remember this day for I was too optimistic in only allowing for only one day's allowance of pills. I should have allowed for maybe 3 days supply.

From home I rang her several times but she was unable to reach  her mobile where I had positioned it on the charger. She rang me about 2000. The staff experienced difficulty assisting her onto the loo, an attempt with a lifter failed because the previous resident of the room had used fittings which obstructed the lifter.

When I see her later today I will lie that I enjoyed a good night's sleep.

In hindsight, the Wild Dog staff do a good job, being flexible enough for the patient's welfare needs to be met. I suppose I shouldn't ask for more than that.

But any more days like yesterday will nullify any benefits of respite for either of us.

Today is one of bureaucratic anticipation.

Chapter 373 - Puzzling Changes

After Dr M. in Hot Air City gave his casual approval for me to reduce her Apo from 12ml to 10ml, I made the change at 2200 on Friday 19th December. The next evening I recorded that she was able to take herself to the loo, pull her slacks and incontinence pants down and up again without assistance, walked unaided to get herself a nightie, then later replaced her incontinence pants, unaided, while sitting on the side of her bed. Tasks which usually require assistance. During that day she had been at respite so there is no record during the day of her abilities.

She saw our GP Dr I. on Tuesday afternoon. A bad day, beginning with her incontinence pants leaking during the night, then I had to assist the carer from Wild Dog to get her onto the commode for a shower, then later to get her off the commode onto her bed where we both had to hold her up to dress her. At the doctor's she was a tremoring, perspiring and stressed wreck. He decided she needed to take 20mg of Lexapro, or Loxalate the generic supplied by the chemist (also known as Escitalopram), and suggested Rectinol for haemorrhoids. Dr I. had no comments about variations in her Apomine dosage. When she is incapable of applying the Rectinol herself while seated on the loo, I have her sit on the commode while I apply the cream from beneath. Wearing surgical glove of course. Also, now that she was pooping more reasonably, he said she should reduce the Macrgol to one per day.

Anyway, awake around 0100 the next morning, Wednesday, pondering the mess we are in, I decided that, although she initially responded well the day after reducing the Apo to 10ml, thereafter she was in a bad way, therefore the reduction may have been a bad move. So there and then, I got out of bed, made up a 12ml Apo/8ml saline syringe and fitted it in place of the 10ml Apo/10 ml saline syringe attached a few hours before. All during the following daylight hours she was able to take herself to and fro to the loo, push her trolley around the house, behaving almost normally. A little after 0900 I drove to the chemist and on my return she had an urgent need, taking herself to and from the loo without any difficulty. Alas, such freedom of movement was not to last, the next day her quality of life returned to what we consider "normal" this past year.

So why does she have better mobility in the 24 hours following a small step change in Apo in either direction, increase or decrease? The improvement is more than my imagination, since I made my notes without such a conclusion in mind. Only in hindsight is such an improvement noticeable, and then crudely because my notes are in noway very detailed. My temptation is to switch between 10ml Apomine one day and 12ml the next as an experiment but I am sure the Apo police may not approve.

Recently an occasional infusion site has shown a small whitish area around the penetration and later turn dark as the wound heals. And usually some inflammation beneath the op-site (used to protect the infusion area) is evident at such times. I may take her to the clinical nurse for comment.

But last night I yelled "Shit!" as I withdrew the infusion needle (only 8mm in length) because a fine stream of blood droplets squirted in an arc from her abdomen over her hip onto the bed clothes. I quickly smothered the blood at the infusion site with tissue, clotting occurred, I cleaned the area with alcohol swabs and attached a circular band aid. The site looks quite OK this morning.

She spends a lot of time using her Surface Pro 3. I am frequently call to sort out messes she causes by erratically clicking on area she shouldn't and she has difficulty remembering passwords. The surface Pro is being filled with poorly identified embroidery designs she may never use, and much paper is wasted to file details of the designs. I am about to make thing easy for her to stitch some of these designs using one of our machines at the kitchen table.

Her ability to swallow is a bother; often she swallows pills and then coughs them back up as another "gets caught" in her throat. The red coated Deralin and the large Sinemet CR frequently cause her trouble. I try to encourage her to drink a lot of water between each pill; until recently she tended to through 3 or 4 pills in her mouth at a time, a very bad habit.