This is not meant to be a negative-sounding title, but is in fact just what it says it is.
You may have gathered from previous postings on this blog that I play in a brass band. Well it so happens that over the Easter weekend, I’m supposed to be off with the band to compete in the National Titles being held in Adelaide. The time away is from early pm Thursday 21st April and returning late pm on Sunday 24th.
Under normal circumstances Pam would need 24 hour care and this would be no trouble for TRIO Support to organise on our behalf. However, it would significantly impact on the allocated hours I have remaining for this year and so to alleviate that, it was suggested that Pam might like to take ‘Respite Leave’ in an MS-specific venue of which there were two offered – one in Melbourne and the other in Ocean Grove. Pam embraced this idea and the thought of the beach appealed to her and so it was decided to book her into Karingal Ocean Grove House starting Monday 18th April and concluding a fortnight later on Sunday 1st May. This respite centre idea saves massively on my remaining allocated respite hours (compared with 24 hour care at home) and gives Pam an unexpected holiday. This was all decided months ago.
An even bigger surprise came when I was told that Pam would be taken and returned by Air Ambulance at no cost at all to us. It just required the booking by our GP, Dr Meyer – and that only needed to be done a couple of days before the 18th, furthermore. I thought all my Christmases had come at once – even though I still had to be involved with my car to carry Pam’s wheelchair, luggage, medication and foodstuffs to and from Ocean Grove.
Pam’s mother and sister are arranging to stay in an Ocean Grove apartment for a few days and Pam and her mother will spend time together – for sadly, possibly the last time. Both Pam and her mother have serious medical and/or age-related issues which, over time, make extensive travel closer to impossible and which bring death inevitably closer.
Enough of that morbidity! Pam is so looking forward to this holiday, (a backhanded one if ever there was) and strangely, I’m even looking forward to the two car trips to boot! I plan to stay in Corio with my sister-in-law Dorothy and even get to visit my brother Ted, where he now lives with dementia at Grace McKellar House.
I’m writing this particular post on Sunday 10th April (by the way) so there’s just over a week to go. A few days ago I casually asked the doctor’s receptionist if she could ask him to make up a “Drug Chart” for the respite centre and perhaps to make the Air Ambulance booking if it was not too soon. As it turned out, I learnt from her (Tanya) that Dr. Meyer was to be away all next week (!) (Just as well I rang when I did.)
I was soon contacted by Tanya and she explained that the Air Ambulance people had put Pam’s flight-needs on the lowest of priorities because she wasn’t a medical emergency being taken to hospital. Therefore it couldn’t be known exactly when she would be picked up (by ambulance) and taken to Mildura Airport. It might be any time Monday and conceivably as late as Tuesday or even Wednesday.
I had to take this news on the chin – beggars can’t be choosers! Furthermore, I completely understood and agreed that this is how it had to be. But it blew out the water my hopes of getting away 3 or 4 hours before Pam was to be picked up (while being cared for in the mean time by a Trio Support Carer) in order to allow me to arrive at Ocean Grove around about the same time as Pam. If I couldn’t know when she was to be picked up, how could I ever know when to so leave? The more I thought about this, the more difficulties I could see: If they couldn’t pick her up until Wednesday lunch time, it would be too late for me to drive down, speak to the staff about Pam’s needs, satisfy myself that she was happily settled and then return home in time to leave with the band for Adelaide – and so I’d have to cancel it.
Furthermore, the return pickup was even more problematic: Given the low priority, I would have to rebook her departure to Friday 29th or even as early as Thursday 28th to ensure her being picked up by her discharge time on Sunday – and that would mean that I would have to get back there (to Ocean Grove) well before I had originally thought necessary – so I rang the Air Ambulance folk.
In regard of the return trip I was told that the Air Ambulance doesn’t operate at weekends for non-emergencies. Oh no! I thought all these arrangements had just about been set in stone – and now the stones were crumbling. Well then, what to do? I tentatively booked Pam’s pickup to be Friday 29th being fully cognisant and fearful that delays might mean an actual pickup on the following Monday. I will have to contact Karingal Ocean Grove House as a matter of urgency tomorrow to ascertain this possibility. (Indeed, if it is possible, I‘ll rebook the ambulance pickup to Monday 2nd May – I never let a chance go by!) Keep smiling; I’m trying to!
Well here I am back again. It's Saturday 16th April, just two days before Pam's potential departure.
Since I last wrote; the very day after had me ringing Karingal to see if it was possible for Pam to stay over on Monday 2nd May. That was tentatively confirmed and so I then rang Pam's Case Manager, Peta Webber, to see if that would be OK. Peta eventually got back to me (after her ringing MS Australia to check for funding) with confirmation of that and so I re-rang Karingal to confirm the booking. I also rang the Air Ambulance people to re-book Pam's departure from Friday 29th April to Monday 2nd May. (Lots of phone calls brought about by a single erroneous Sunday departure booking, but I'm not complaining.) I started to wonder about funding, who was funding the Air Ambulance (and associated road ambulances) and was the $30 being charged per day for accommodation anything like the real cost?
Those questions still remain somewhat unanswered to me, but what I quickly began to notice was the willingness of cooperation being shown by everyone concerned. The Air Ambulance folk told me to phone them the night before the trip to be told when Pam would be likely to be picked up. Excellent! Now I had a chance of getting away – of course that will all depend on how early they come, but if it turns out to be around mid-day, TRIO can be involved and I can get away earlier. So I find out tomorrow night and then tell TRIO straight away.
I set about typing up a list of things to pack in readiness for Pam’s trip. I knew that if I didn’t, I would almost certainly forget heaps and over a distance like this, to forget even one thing could be disastrous. So I typed away on my PC and quickly the list grew surprisingly big. It needed tweaking over the next day or two but finished up with six categories. Here’s a list…
1. Toiletries 29 entries
2. Food / Delivery 6 entries
3. Medicines 9 entries
4. Clothes 10 entries
5. Utilities 6 entries
6. Transport 6 entries
I should add that many of the ‘entries’ in the above list are about groups of things. For example, one of the ‘Medicines’ entries is “Current daily medicines”.
On Wednesday I took Dr Meyer’s drug chart together with all of Pam’s daily medications to Brooke at our Lime Ave Chemmart Pharmacy to have them packed into Webster (blister) Packs – this is a requirement of the respite house (Karingal). Well, Brooke is the epitome of helpfulness, but she said that because of some issues with how and when Pam’s meds are delivered that that would take time to do and I was to pick them up on Friday. Unperturbed, I went home oblivious to the fact that Pam was still days away from Ocean Grove and all her meds were now at the pharmacy! Therese (a TRIO Support carer) was still with Pam and so back I went to bring back enough tablets to suffice. By the time I got there, Brooke had counted off the correct amount of tablets and had put them into properly-labelled safety-lidded pill bottles – all very professionally done and done for me at no charge!
I was somewhat bored on Thursday afternoon and I was tiring of looking at “Pam’s ‘Going-it-Alone’ List” document sitting in front of my PC keyboard, so I decided to start packing whatever I could. Here's a picture of some of the stuff going down in the car - including me, 'cos I'm driving...
(You'll notice that I didn't bother to comb my hair and that I haven't as yet been beaten quite enough with the ugly-stick. At least that's MY opinon)
There's the electric wheelchair (that's what I'm sitting in), two packed cases (with a rug on top) and boxes of PEG food. I'm nursing a box of feeding-tube Compatysets as well as a box of 50ml syringes. A few other things including the wheelchair charger are out of sight and this lot doesn't include a stack more, including the Compatyset feeding tube stand, that I can only collect and pack on the day that Pam actually leaves - what fun! This lot wouldn't fit into a Falcon, but it fits into my Renault.
Friday came and off I went to collect the Webster Packs. Brooke was there as was Pharmacist Tim DeBoo welcoming me there. The blister packs were nearly ready to go and only need to be sealed – I offered and was allowed to help this happen. Webster Packs have to be seen to be believed – each cell is comprehensively labelled stating exactly what’s within and dates and times of the day to be delivered are also clearly labelled. Four times of day are provided for, but for Pam’s requirements there are seven times each day. This is one of the difficulties that Brooke confidently dealt with. One set of packs for four of the medication times and another set for the remaining three. It’s not quite as straight forward as that, but I won’t go into the details.
Incidentally, Tim DeBoo used to play in Mildura District Brass Band and strangely enough, the pharmacist from the Deakin Ave Chemmart branch, Geoff Steedman, still does. That could have something to do with why I choose to shop there. But I must say, having people on staff such as Brooke counts for much more.
It's now Tuesday 26th April as I type this...
All went almost according to plan for Pam’s trip to Ocean Grove. I rang the ambulance at 6pm Sunday 17th and was told I’d be rung back as soon as the air ambulance flight-time was known. At 7:50 I was indeed rung and told that Pam’s flight would almost certainly be leaving at 10am next morning.
Wonderful! I rang up TRIO and requested cover for Pam from 6:30am to allow me to get away early. I had everything already packed and those things (wheelchair, two luggage cases, colostomy gear, catheter gear, boxes of liquid PEG food etc) just needed to be taken to the car in readiness for the morning. I was up at 5:30am, Therese arrived at 6:25 and I was off to Ocean Grove!
At 10:15, I rang home expecting to get no answer, but Therese did and she said the ambulance was just arriving. Well at least they’re there, I thought – and smiled. All was well and the world could keep turning!
I arrived at Karingal Ocean Grove House around 1:45pm and had just said hello to the staff when Pam’s ambulance arrived – all the way from Avalon Airport. Was it good timing or a fluke? I spent the next couple of hours unloading Pam's gear from my car, PEG-feeding her (her 11am feed – somewhat late), explaining Pam’s needs to the staff and trying hard to ensure they understood that none of my ways were set in stone – they were to adopt any procedures they were used to just so long as Pam was happy and properly fed. Then I drove to my sister-in-law Dorothy’s place for the night prior to my return to Mildura next day (Tuesday). First stop on my way home was to Grace McKellar to see my brother Ted. He recognises very few folk these days, sometimes (far too often) not even his own loving wife Dorothy, but when he saw me for the first time in 18 months he said "You look like my brother Eric". Well that deserved a hug I thought and so gave him a good one.
Here it is, a week later… It’s amazing – I don’t know what they’re doing, but every time I ring Pam she seems younger and stronger. Her voice sounds more like it did prior to her stroke and if I didn’t know better; I’d swear she no longer had MS. She seems to be VERY happy – our daughter Jeni has been to see her and her mother and sister have taken accommodation in nearby Barwon Heads and are spending heaps of time with her. Pam told me yesterday that today she hopes to get outside with them in her wheelchair – to date, it’s been too cold, she said. I’d love it if she could get out and have a look around.
OK, I'm now writing this on 2nd May, 10pm.
I arrived back home at 4:20pm today and then unpacked my stuff and 99% of Pam's. I'd left her behind in the Geelong Hospital (Yes, the HOSPITAL..! read on) with a few tins and packets of PEG food and some colostomy gear, me being optimistic that she’d be back in Mildura just after I arrived or perhaps tomorrow – but now I’m not holding my breath!
As I described above, Pam was having a wonderful time and getting noticeably stronger by the day. I had driven down to Ocean Grove on Saturday 30th April, arriving early afternoon and there was Pam looking radiant. Everyone there, staff and clients alike, were delighted with her. I spent some time with Pam then left intending to return next day to pack her ‘stuff’ (electric wheelchair, 2 luggage cases, PEG-feed stand, assorted boxes etc), into the car.
However, for some reason my mobile phone decided to malfunction through the night and while I ate breakfast on Sunday morning, my sister-in-law Dorothy got a phonecall from daughter Jeni. She had been trying to ring me for some time on my malfunctioning mobile to tell me that Karingal had been trying to get me but couldn’t and so they defaulted to ringing her in Mildura. The message was for me to ring Karingal urgently…
My mobile phone was stuffed (I thought) so I used Dorothy’s landline, which she would have preferred I did anyway.
I was told that Pam had felt nauseous and had vomited in the early hours after sunrise and may have aspirated some (AGAIN!). Penny, the head person to whom I was speaking, said that the ambulance was called and had just arrived. I was later rung once more by Penny and she subsequently informed me that the ambos’ opinion was that Pam needed to be taken to hospital and I should go there forthwith to be there when she arrived.
And so it was – I got there (to Geelong Hospital Emergency Dept) 10 minutes before the ambulance arrived from Ocean Grove but was made to wait a further 15 minutes while Pam was 'settled in'. I watched TV, but don’t remember a single thing I saw.
I eventually was shown to Pam’s cubicle (No 13) and there she was – thoroughly back to her pre-holiday state. She had been crook and was still feeling quite a bit iffy, she was dog-tired and could hardly string three words together to talk.
All this was happening the day before she was to be flown home! Yeah, flown home with happy memories of her wonderful back-handed holiday, a back-handed holiday now with a sting at the end.
On the previous Monday, Pam had been loaded into her wheelchair and taken by bus into town to a mystery café by the beach. Waiting there for her, to her surprise; was her mother, sister, brother-in-law and their extended family. She was fitter than she’d been for 24 months and evidently had a ball talking happily with them all and looking at the waves and the surfers thereupon.
What was happening now was not even a week after that happy time, but of course I’m so glad she had it just the same - perhaps even moreso.
Getting back to Sunday (yesterday), I drove to Karingal to collect Pam’s ‘stuff’. Penny had been an angel and had packed everything up according to my list – I could have kissed her! I had it all packed into my car within 40 minutes and I then once again drove back to see Pam. I stayed while she was admitted and trolleyed to bed B, room 703 (7th floor – at the top) in the Heath Wing of the hospital. And that’s where she is as I type this.
Whilst in the Emergency Dept, Pam was chest X-rayed and shown to have clear lungs. A second X-ray was needed at some time later to ensure there was still no infection clouding, but when I went back this morning (prior to driving back home to Mildura) Pam was looking quite well. The 2nd X-ray was still to happen, the previous Air Ambulance had been cancelled and another wouldn’t be booked until the good doctor had seen the yet-to-be-taken 2nd chest X-ray and had arranged a bed in one of Mildura’s 2 hospitals (Base or Private) – both of which are probably crowded to buggery, knowing my screwy optimism.
So here I am tonight, having been told by Geelong Hossy that Pam won’t be coming home today, but prepared to bet better than even money she’ll be home someday soon, maybe tomorrow.
Having had a big sleep, it's now Wednesday 3rd.
Pam's OK - no pneumonia and she wants to come home. Indeed that’s to where she’ll be coming – into my care and not to either of Mildura’s hospitals. So that's a plus!
Alas, they couldn’t get an Air Ambulance booked for this afternoon, but I was told she’d definitely get one tomorrow. I cannot know at this stage exactly when she will arrive here and so I have just now organised Geoff Steedman (the Pharmacist) to play my euphonium at a ‘Vintage Brass’ job in Ouyen, scheduled for the middle hours that day. I just can’t go – I’ve got to be here for my bride! Everything is unpacked and put away - the only thing missing is the missus.
(This holiday is turning into a book!)
It's just gone 4:15pm and I've also just received a call from Heath Wing (Geelong Hossy). The Air Ambulance folk have decided they can bring Pam home tonight, picking her up from there (by road ambulance) around 5pm (in just over half an hour!) I have just cancelled some previous cancellations and I guess that just about dusts off this holiday story. I wonder what happens next, and what its title will be?