A Skippers Tale XXXI

Taken Aback

Had I written this post yesterday, it would have started something like this.

“Stubborn, pig-headed, ornery, inconsiderate, foolish old bugger!”

And if you had guessed that I had started to get smatterings of the “Anger” phase of grief… you wouldn’t be far off the mark… but not for the reasons you might think.

Yesterday (and please read that as the 19th as I am writing this after midnight), Mum and I went in to see Dad.  We knew that Monday and Tuesday was going to be taken up with ringing around trying to source accommodation placements for Dad and that the three hours an average visit takes out of the day is quite a substantial chunk.

We arrived at the hospital around 11.30am.  We found Dad sitting up in his chair with the ABC morning news on.  On the table in front of him was what I thought at first to be the leftovers from his breakfast (there were items there, but no tray).   Mum asked Dad had he had breakfast… Dad said yes… but from what we could see, the only thing he seemed to have ‘eaten’ was a glass of apple juice.  Mum asked Dad why he hadn’t had breakfast and he responded with a statement that at first Mum and I shrugged off to misspeaking.

“I’ve trained myself to eat less than what they require of me.”

I think the statement caught Mum by surprise and we both seemed to have the same thought that perhaps making the choices by himself were getting confusing for Dad, so Mum went off to speak to his nurse and Dad and I chatted as best we could… in other words I spoke he zoned in and out while he ate about half a wholemeal bread roll.

While Mum was gone the orderly came to deliver the menu for the next day, and I was just about to go through it with Dad when Mum came back with a little sign to stick on Dad’s table to help people with Dad’s food choices (aka a list of things he preferred etc).  We asked Dad what he might like and he became quite evasive… When Mum asked did he want something hot or cold for lunch, he replied

“It doesn’t matter, whatever they send is just going to be sent back.”

Mum and I looked at each other.  Mum said to Dad that he had to eat to keep his strength up; which was when he repeated what he said earlier. “I’ve trained myself to eat less than what they require of me.”

If Mum had not been sitting on her walker I think she would have fallen over.  After a moment, Mum moved so that she was sitting right in front of Dad and told him he had to eat something and asked if he didn’t want to eat

During the course of this illness I have seen Dad shoot several pugnaciously belligerent glares at Mum and I… something akin to a child just before they let fly with a tantrum… Dad had that look at that moment.  “No.” was the reply.

This really did a number on Mum and I could see that she was hanging on very tenuously to her calm.

“You’ve given up haven’t you?” Mum asked.

From my angle in the chair I didn’t see Dad’s response, but Mum said he nodded.  That was the end of Mum, she covered her face and started to cry and I knew it was time for us to go.  Mum said later that she wanted to shout at him how there were hundreds of other people in that hospital many of them in agonizing pain who wanted to live, and here he was in very little pain letting himself slip away.

Mum didn’t say it… but she did express a little of her anger at Dad’s response just as the Nurse arrived.  Mum let the nurse know what was going on and we left.  All I could do was hold Mum at that point… I think it really shattered her to see Dad like that.

For me personally I found myself shutting out any emotion at that moment, my job then and there was to be there for Mum and to drive us home… I know driving calms me when I AM upset, but it’s not a great place to start a car trip from.  My frustration and emotion came out last night in the shower… again….

I think the hardest thing for me in all this is the fact that in a very true sense, I have already sort of lost part of Dad.  Since this all blew up I think I have heard Dad laugh probably twice.  Dad has always had a good sense of humour and often we would watch something on TV and he would have a chuckle… If this was Star Trek I would say something has removed his emotion chip.  He is so…. bland… so…. toneless…. all the nuance and timbre of his personality seems to have been leeched away.  I wish I could understand what he is going through and somehow link into him and help, but I am really powerless.

Mum has to see her Dr either tomorrow if there is a cancellation or Wednesday.  Mum’s wheezing is getting more pronounced and I have noticed that on days when we are going in to see Dad that Mum is being physically ill in the mornings a churning stomach.  I am going with her and I’m going to see if the Dr’s can a) do a referral for her to get her own ACAT and b) if we can get a referral to speak to someone in a counseling role so that she can have an independent, yet sympathetic person to vent to.  And don’t worry… I will be probably doing the same… however, I think I will use the services of the group through work and/or the University offered counselors too.

Anyway… bed calls.

Later days…

Yoli

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A Skippers Tale XXX

Longshot

And it is indeed.  Mum and I attended a meeting with Dad at the Cancer centre today with his Radiation Oncologists Stephanie and Suki.  We are still trying to processes the information they have given us and work out how much is wishful thinking/bolstering out spirits and how much is not.

The easiest way for me to explain is to show you.

scan1

This scan was taken on the 9th of February this year when the attack first happened.  Now, you need to understand that you are looking at Dad’s brain as if you are looking up from his feet and that the left is the right and the right is the left.  So, in this cross section you can see the three tumours (I’ve shaded them in red).  The one closest to the edge is the one they biopsied to confirm the prognosis of GBM (Glioblastoma Multiforme)  You can see why they couldn’t go after the other two.  Even then, the one that is sitting right at the centre of the hemispheres is ever so slightly encroaching on the right side of the brain.

Now compare it to the one taken last week.

Scan2

Suki Gill, Dad’s lead Radiation Oncologist was saying that SOME of this “Growth” may be a ‘false reading’ as often areas of the brain that have been treated from the radiation can mimic growth on the scans, the real deciding factor is how the patient is doing.

And this is where we have the conundrum.  We want so badly for this to be true and that this image is only showing scorched cells from the treatment, but the truth of the matter is… Dad isn’t getting better.  Every day I’m seeing more of him slip away.  He has this persistent cough that isn’t on his chest, but is irritating to him and the act of coughing continuously is causing his head to hurt.

Dad, unlike me, is very resistant to the idea of painkillers… you basically had to hit him over the head with a 2×4 repeatedly to get him to even take a Panadol…  (Me, well… let’s just say I’m like my friend Kate here… we should buy shares in the company that makes Neurophan and Mersyndol :D)  But more recently Dad has been admitting to having increased headaches.  The Dr’s are going to put him on a cough suppressant and antibiotics to see if they can clear up the cough.

Mum is having it rough… even setting aside the stress of the trips into see Dad, she is just getting really tired.  We are trying to work it so that Mum has the afternoons free to have a sleep if she needs it, but it’s just all a bit overwhelming.

She’s made the decision that she’s not going to be able to make it in to see Dad at Charlies every day… it’s just too much, which of course is playing on her mind over the fact that she’s not going in every day… Mum knows that her health has to be taken care of, and lots of you have reassured her of that fact, but as she says… it doesn’t make it any easier.

I think she would feel better if she knew someone was visiting Dad on the days we can’t make it… even though the likelihood is that Dad probably wouldn’t remember it after a while…

The sooner we can get Dad out of Hospital and into some sort of care arrangement the better.  To that end Monday is the big ring around day.  The first question we have to ask is do they have any funded bed available, because if they don’t we already know that the placements are going to be about the same as I had previously ranted over.

One final thing before I sign off… I asked the doctors a question today, one that I felt like a complete heartless cow for, but I wanted to know for Mum and Dad’s sake as much as my own.  I asked the question about the end… What could we expect.

I’ve mentioned this to a couple of you already, and the answer is pretty much what I suspected.  As this disease progresses, Dad is going to want to sleep more and more… let’s face it, sleep is our body’s way of trying to heal…  Any discomfort associated with this is likely to come from swelling around the tumour sites which is when they would manage Dad’s pain levels with appropriate medication.  Suki alluded to the fact that in most cases, death comes simply and relatively peacefully.  The analogy he used is that the brain might fail to send out the message to the heart to keep beating, or the lungs to keep breathing.  This oddly comforts me…. it really doesn’t…. but it does at the same time.

Anyway… I’m off to bed again… There is a pile of paperwork that i have to wade through tomorrow and bills I have to work out if have been paid or not yet.

All my best to everyone reading this

Yoli

A Skippers Tale XXIX

Ship to shore do you read me anymore?

Sorry for the brief break in transmission, but the past couple of days have been fairly full on in mine and Mum’s department, but fairly light on in Dad’s.

We were scheduled to have a meeting with Marie the social worker at Charlies 10am Monday morning.  The purpose of the meeting was to sign the authorities for them to do and updated ACAP assessment so that we can get things moving on getting Dad in to full time care.  As it turned out, our electrician turned up to do the preliminary wiring for the shed and Mum was quite under the weather… We now think it is was a combination of stress and strain on her body that resulted in it going… nup, we’ve had enough!  So we delayed going into the hospital until today.

The Nurses had informed us that Dad had started doodling pictures of cats on his napkin, so when we went in today we made sure that I had put a pad of my cartridge paper and some pencils in with our stuff.  Dad back in the day was quite the talented artist… it seems to run in the family, as we (ie our extended family) have several bits of art work by various men in our family over the years… I have to dig out Dad’s “Helicopter” one some day.

We tried a bit of an experiment with Dad while we were in there today, I had noticed that for a good couple of weeks that Dad hadn’t seemed to have said Mum or My name out loud, so we wanted to see if this was just because when you know someone really well you don’t always say their name, or if he had actually forgotten.  Ironically when we first questioned him Dad responded with our email “Names” BML3598 and Rimsey… go figure.

After talking to Dad we headed off for our meeting with Marie.  She’s being able to use the original assessment to build a new more care driven one for Dad, so a lot of the work has been taken off our hands thankfully.  She commented that Dad is in an unusual situation… They would prefer NOT to keep him in hospital simply for the fact that he isn’t dependent on MEDICAL assistance at this time, neither do they think he’s a good candidate for a traditional “Transitional” placement in a care facility, so they were talking to Bethesda Hospital in Claremont to see if they could find some sort of arrangement… He’s slipping between the two cracks of a) being well enough that he’s not considered “Rehab” and b) not being ill enough to fit the traditional palliative *at*this*stage*.  Marie has given us a list of care facilities in the Perth metro area and it’s now a case of doing the ring around to find somewhere that has a concessional bed.

She sent us home with a wadge of paperwork to fill in – it is basically the same form I got on Friday with all 145 questions… HOWEVER, I did find out that because Mum and Dad are receiving DVA benefits that most of the asset information has been included on that so I could avoid a dog load of questions that were, quite frankly, going to be a pain the butt to try and find and so I should have that off to the assessment team in the next day or two.

Our liaison Buster called to say that he had been in this afternoon to see Dad and, much like Sid before him, found that Dad lost focus fairly quickly and seemed quite tired.  He did also mention that he had spoken to DVA and they had sent an email outlining which facilities would accept Dad at full funding for palliative treatment.  Bethesda was one, and St John of God’s Murdoch was another…  St John’s Murdoch would be brilliant, as it is much closer (only about 17 km’s) from us instead of 40.

We do have a couple of other balls up in the air, but I’m not going to jinx anything by getting my hopes up…

Mum has decided that she’s gotten to the point that she doesn’t think that she is going to be able to make it in to see Dad everyday where he is… it just takes too much out of her.  This evening her legs were like rubber and shaking because of the walking she has done in the past couple of days.  We are certainly going to look at two things in the near future… 1) selling her 2009 Toyota Yaris sedan – putting it out there if anyone is interested… and getting instead a little buggy (God help us all) and 2) trying to trade in her current walker for one of the newer models that can double as a wheelchair.  Mum and I can do a sort of arrangement with her current one, only she has to be facing me and tuck her feet back up under her legs which isn’t very comfortable.  Nowadays you can get ones that actually have the handles that can spin around so that a companion can push the walker like a wheelchair….

Personally, as mercenary as it sounds, when everything has settled down I am going look at having a couple of days somewhere just to unwind and completely relax.  I know I have had my two “nerdycon” weekends as my bestie Leanne calls them, but they were pretty full on, yes they were a break, but not a very relaxing one.  If I take a break this time, it’s going to be a full on – do nothing but veg out if I want to break where I don’t have to do anything if I can possibly avoid it!  But that is for the future.  For now, as always, one foot in front of the other, one day at a time… that’s all any of us can do…

Love to you all, and thank you for your messages, and I apologise if I am not responding individually.

Yoli

A Skippers Tale XXVIII

There be Pirates in these waters!

It’s 8.30 and I am struggling to stay awake long enough to post. Mum and I are knackered! So an apology if this is brief.

After dropping the puppy off at doggy daycare Mum and I headed into the hospital with a view to catch up with Dad’s social worker to discuss where we go from here.  We arrived to find Dad’s room nicely located near the Blue elevators at the back of the hospital.  Dad was sound asleep when we arrived.

After encouraging Dad to eat his breakfast before the staff came to take the tray, we waited for the Social Worker.  I could see Mum was getting more and more stressed as the minutes passed. Finally Mum had enough and she went ‘for a walk’… Code for… “I’m going to find out what the hell is going on”.  Ironically it turned out that Marie our Social Worker was just cramming Dad’s notes when Mum arrived at the nurses station.

We discussed with Marie our concerns for Dad, and despite asking him a fairly straight forward question about what had happened in the last few minutes, Dad’s memory played tricks on him… He recounted being asleep and waking up to Mum touching his hand and that he had eaten his breakfast, but then he went on to say about other people in the ward and how they were in there for the same thing trying to get the blood sugar settled etc…  Mum went to correct him, but I touched her hand, and as I explained to her later… when Dad is talking like that it’s not in his best interests to interrupt or correct him especially if a medical person is trying to assess him… plus any train of thought could be derailed very easily if we interrupted.

Marie agreed with the Dr’s and our assessment, that Dad isn’t in a well enough state to return home for care.  Many of you may be aware or have been able to read between the lines of this blog, but in the past week or so, the tumour has started his ability to regulate or control his bodily functions on a semi regular basis.  This, along with the fear of Dad falling or inadvertently injuring himself trying to do household items is getting beyond our ability to assist him.

We have made an appointment with Marie for Monday morning to complete an authority for what they call an ACAT (Aged Care Assessment Team).  This re-assessment will be a follow up to the one that was done when Dad first got out of hospital.  With this we can start looking at facilities that might be able to take Dad.

When we got home This afternoon I called the care centre I had previously alluded to in my blog, and we were able to go down and have a look at it.  It is a wonderful light and airy place that I am sure Dad would be happy in….  *IF* we have $490,000 to put down as a bond!!!!!!!

What.  The.  Actual.  Faaaaaaaark!

<<INSERT RANT HERE>>

It boggles my mind that in addition to the daily rate of $47 and change room rate, families of patients are expected to fork over nearly HALF A MILL in bond money…. FOR WHAT?  Okay I appreciate like any bond it’s designed to be there for damage etc that the person may cause… and I can appreciate that with some of the longer term patients you could be looking at someone in care for 5+ years….  But for someone in Dad’s position… really?  If you can’t pony up all the money they do have a nice option where you pay what you can and then you have to pay the INTEREST on what ever is left over… at 6.5%.  All in all with no deposit you would be looking at approx $1800 per fortnight.

Now… this is not taking into consideration any concessions you might be entitled to through the likes of Centrelink or DVA… however, you then have the issue that you need to find a facility that has an available “Concessional” bed available!  And even then it doesn’t cover everything.

Holy Crap!

I said to Mum, half joking, that at this rate I’ll put my stuff in the unit into storage and move into the main part of the house and we will hire a full-time live in nurse and ensconce her and Dad in the unit!!!!!  It would cost less!

And the thing is, this isn’t going to be a long term placement.  I mentioned to a few people that I would be surprised if Dad was with us at Christmas 2016.  At the rate of decline Dad is experiencing… I’m starting to wonder if we will be sharing Christmas this year with him.

Anyway… I am cold and I am tired and I am going to bed and hope something improves tomorrow.

Love

Yoli

A Skippers Tale XXVII

A Change of Berth

After yesterday shock Mum and I both had a pretty disturbed nights sleep (go figure).  However, what sleep we did get seemed to help a bit and we were feeling a bit more brighter this morning.

This was helped by the fact that we had a call from Dad’s doctor (Chris) to go over with me what he had told Mum yesterday.  Also he informed us that he had spoken to Dad and that he was now aware of what his condition was like.  Dad knowing lifted a fair amount of weight of Mum’s shoulders, because, as she said to me, she didn’t think she could face Dad having to sit on the information if he hadn’t been told.

Chris advised me that while there don’t appear to be any NEW tumours the ones that are there have not halted their growth despite the treatments.  The tumour that is the deepest in left hemisphere right near the ‘brain crack’ or septum pellucidum to be accurate (I *think*) has had a significant increase and has now started to infiltrate the right hemisphere of Dad’s brain.  God only knows what functionality issues that might cause, and it’s something that we are going to talk to Chris about tomorrow.

Chris did say that there was another treatment they could try, it was “Good” in his words… “But not fantastic”… it also would cost about $20,000 because it is still a bit experimental and not covered by Medicare.  I told Chris ultimately what both Mum and Dad told him.  Mum and Dad’s wishes when it comes to things like resuscitation and other ‘life extending’ treatments is both the same… neither of my folks want treatment for the sake of time…  There are no guarantees… this particular type of tumour IS terminal, so what’s the point of putting Dad thorough potentially wasted/painful treatments with unknown side effects for the sake of a few weeks/months more?  Chris agreed and believed that quality over quantity is sometimes the best thing and that he had just mentioned it because some patients want to ‘throw everything’ at it.  Chris commented that Dad was ‘Stoic’ when he was discussing the situation with him (a very appropriate choice of words for Dad).

Mum and I went in to see him after we had spoken to Chris… he was still on ward G41 despite having been said he was being moved up to Oncology about 4 times 😀  I spoke briefly to the social worker who is handling Dad’s case and she said she would look to catch up with us tomorrow (Friday) if possible.  While we were talking Dad, for the first time, actively sought painkiller medication… Now, for those of you who know my Dad… he’s never been one to take undue medication… getting him to take a panadol almost required a Royal decree… so to see him ask for painkillers, it gave us an indication that he is aware of what is going on and that now he needs to accept any help he can get to make things easier.

The other big first came when we were about to leave.  As Dad and Mum hugged he apparently whispered in Mum’s ear… “It’s going to be okay”.  This is the first time since his initial diagnosis that Dad has outwardly demonstrated his acknowledgment of Mum’s situation.  That’s not to say I am certain that he’s been thinking and worrying about her… but he just hadn’t said anything up until that point.

So now we need to move forward.  As much as it grieves Mum and I not to be able to care for Dad at home we had to be practical about a few things.  Dad is in that no-mans-land between being able bodied and not… the steroids are chewing through Dad’s muscle reserves and so he will become increasingly frail.  One of our biggest fears with him in the house is him falling if I am out or something of the like.  The other issue we have is as this progresses and his memory diminishes we may get to the point where Dad becomes a danger to himself left on his own even for the shortest period of time.

As it was we were constantly having to watch where he was, and what he was doing… we had a couple of near misses where Dad had decided to put the dogs tea into cook, but without any water in it… there is a real chance that Dad might start something every day, but end up forgetting what he was doing and walk away leaving an unattended flame or something of the sort.  At least if we can get him into a care facility, he will still have freedom and independence, but to a point… he would be less likely to encounter activities that could pose a threat by himself.

We have been given the name of good care facility that is just down in Kelmscott (about 7 kms away from home) that deals with people with a full spectrum of care thanks to our former neighbour Lyn.  So we are going to talk to the social worker about that tomorrow.  We have spoken to buster who has said that DVA should pick up all costs associated with getting Dad into a placement which is brilliant, because I didn’t know how gobsmacking expensive the bond for one of these places are… it’s bonkers…. and it should be illegal!

This afternoon Dad had a visit from Uncle Shane… and guess what!  They have finally moved him up to ward G73!!!! about frickin time!  And while Uncle Shane was with Dad, Mum and I had a visit from my cousin Paul, which was really appreciated too!

Anyway… it’s late… my fingers risk freezing to the keyboard and I want to catch up on what I missed last night.

So… again, thanks for your well wishes…

Love Yoli

A Skippers Tale XXVI

St Elmo’s Fire

This is a very brief post for this evening as it is pretty much all I can do right now.

I returned from collecting Coco from doggie daycare today just as family pulled up who was purchasing our cross trainer.  I stayed outside to help them, said my farewells and walked inside to find Mum in a right state.

While I had been outside one of Dad’s doctors had called to speak to Mum about Dad’s general care… and the results of the MRI.

The long and the short of it is… the treatments Dad has had haven’t worked.  Not only are the tumours still there, but it appears it is the worst we suspected… there are more.

How many, I don’t know… and until I can speak to the Doctor tomorrow I can’t offer really any more information.

The Doctor asked Mum outright if she believed that we would be able to care for Dad at home.  Much to Mum’s distress she/we have agreed that if Dad’s condition continues the way it has… then, no.

Anyway.  I don’t want to leave Mum alone in the main part of the house for too long.

I will update when I have more information.

Yoli

A Skippers Tale XXV

Chock-A-Block

Well today was a sort of a non starter in the Lawrence clan.  We had been told by the nurses at Sir Charlies that Dad was going to be moved from ward G41 to ward G73 sometime that morning.

For the past few days the Doctors from the oncology ward have been coming down to check on Dad on the cardiac ward, today was going to be the day that they would finally have a bed free to move him upstairs.

As we were about to head into the city, we had a call from the crew who are building my studio out the back to say that the products were FINALLY being delivered…. as in they were on their way… crap!  Fortunately the ‘lower’ car bay at the front of Mum and Dads place was free so we told them just to put the stuff in there it would be secure, because as sure as god made little green apples if it had been left out the front there would be a bit missing by the time we needed it.

Crisis averted Mum and I headed in… Now the weather in Perth has been, um… damp the last couple of days, and today was no exception… exceptionally cold and drizzly with bouts of psycho rain dumpage it made for an interesting trip in on the freeway.  Fortunately we had left after rush hour which limited the chance of us meeting a traffic snarl.  As a recent Facebook post I saw said… “If you don’t swear while you are driving, you aren’t paying enough attention to the road”… so true!

Jesse, Dad’s nurse called just as we were going along Mounts Bay Road (about 5 minutes from the Hospital) to say come up to G41 as the transfer hadn’t happened yet.  We arrived to find Dad standing up and looking out the window in his room at the misty landscape.  The hospital PJ’s were a bit loose and I don’t know exactly how much weight he has lost since this started, but to give you an idea Dad used to wear between an L and XL in menswear… now he would be a solid M bordering even on a S… and dare I say it lest the ladies on this mailing list grind their teeth… he has achieved that which many of us only dream of… Thigh Gap! (however I am not suggesting this as an effective course of action!)

The Dex seems to be having some effect because though still confused Dad seemed more lucid.  He still can’t handle questions that have multiple answers like do you want shepherd pie or pork medallions for tea?  Trying to grip on to both options still alludes him.  The frustrating thing for him I think is the fact that I’m sure he is aware that he’s heard the two options he just can’t get his brain to hang on to the information.

Jesse came in and said there was likely to be a bit of a delay up at Oncology because they were so under the pump bed wise up there.  And that they would probably wait to do the family meeting until Dad is settled in the ward.  I did ask about the MRI that Dad had had, but Jesse said she hadn’t seen the results and she wasn’t able to interpret them anyway.  The other thing she did say was that they had taken a urine sample from Dad and it appeared to have some bio-buggers in it.  I wasn’t aware until that time that a bladder infection in older people can cause confusion!  So in addition to all his other medications, Dad has been put on a course of antibiotics to try and clear anything like a UTI up to see if that makes a significant difference too.

We left the hospital shortly after that and headed back home.  On the trip in Mum had mentioned to me that last night she had been laying in bed and she has finally come to the conclusion that in reality she hasn’t ‘accepted’ what has happened to Dad.  This revelation didn’t surprise me.  I had suspected as much for some time, but it was good for Mum to be able to get herself to a point where she can acknowledge it herself.  I’ve suggested that when we speak to the social worker that she perhaps see if there is a counselor that she could sit down with and talk about what’s happening.  I know all our friends and family have offered their love and support, and even the Doctors and Nurses have been great… but everyone around us has a vested interest as it were… you guys are having to deal with this news in your own worlds, and the medical staff by nature take a more clinical approach.  Mum needs to be able to talk to someone who has the skills needed to be able to offer comfort and support, but still maintain some detachment.  I am sure there are things that Mum wants to talk to someone about, but might not feel it’s appropriate/right to offload on one of us.  I really hope that she can get to talk to someone, I think it would do a world of good for her… heck… that being said… it wouldn’t hurt if I took some of my own advice too.

We arrived home just in time for the arrival of two strapping young lads and a trailer load of prefabbed sheets ready for assembly.  We have told the hospital we basically won’t be free until Friday as the shed might go up tomorrow or Thursday.  Once the shed is up, I will finally be able to start unloading my assorted junk from the house to the the shed 😀

Other than that we had lunch, watched some TV… and I finally appreciate why Dad spent much of his time dozing in his chair… when you have a lap full of cat and dog and a gentle murmur from the TV… sleep comes damn fast!

So I will sign off for now… if I don’t post for the next day or two, fear not… I will update when we have new news.

Oh PS… as of 8pm this evening… Dad was still in G41 😀

A Skippers Tale XXIV

ship-shape and bristol fashion

This post heading isn’t so much for Dad… it’s more for Mum.  FINALLY success has been made in the hair department.  Today at lunch time Mum and I made it over to Maddington and she was able to get her hair cut.  Unfortunately her normal hair dresser Sue was unable to cut it owing to tearing the ligament off her knee, but her daughter Caitlyn did a brilliant job in lieu of her Mum.

We had a bit of a Blu-ray binge at Sanity and came away with Big Hero 6, Cinderella (original) and The Kingsman… Mum was itching to get home and watch Cinderella because she wanted to relive the joy she felt watching it as a small child.  Unfortunately Mum and I had both forgotten that the power was off today so that Western Power could change a light pole at the end of our street… Bugger!

So… what did people do before TV… oh yeah… read a book… it’s like downloading for your brain.  Mum and I snuggled into the lounge with lunch and a book each and waited for the power to return.  Shortly after it did we had a call from Sir Charlies.  Dad was being loaded up into the MRI tube as the technician called us… The reason for the call, there were some basic questions that Dad didn’t seem able to answer about his medical history that they needed to know.

The social worker Nadine also contacted us and it looks as if the family conference is going ahead tomorrow some time.  Either way, Mum and I will be going in to see Dad tomorrow.

We have spoken to him on and off throughout the day, and this evening Mum asked Dad what he had for tea… Dad’s response summed things up pretty well.  “I know what I had, but I can’t find the words”.  So it looks as if part of his brain seems to be responding to the extra Dexamethasone, but for how long?

Other than that I really have not a lot else to say other than it’s an unusually early time for me to be going to bed…. not…<<droopy head>>…. that…<<yawn>>… I…. <<Blink blink>> need it or any thin………..zzzzzzzzz

This is Elsie.  My human is drooling on her keyboard… So I will say goodnight and remind you all.  Your benevolent furry overlords demand your subservience… and boxes to sleepz in… and noms!

A Skippers Tale XXIII

Looking for Safe Harbour

Well, Mum and I had an uneventful, but somewhat interrupted nights sleep last night.  No real surprise there (we’re hoping for a better night tonight).

We decided to call the hospital at little after 8am to see if they might have any indication if Dad would be likely to come home today.  The nurse on duty said she wasn’t sure but if it was it wouldn’t be until later in the morning, so if we aimed to be there about 10.30 we would have a better understanding.  Mum got put through to Dad’s bed and she had a chat to him for a minute or so.

We ensconced the various pets in their appropriate places and headed in to the hospital.  Originally we believed that Dad was being put in the oncology ward, but in point of fact the ward they have him in is in the cardio ward.  This has nothing to do with any heart issues and more to do with accommodation near a nurses station.

Ironically we arrived just after the duty doctor had been to see Dad, so we were unable to talk to her, but we were able to get an in depth rundown of what was going on with Aggie his nurse.

The long and the short of it is this… Dad, like I said is now on 8mg of steroid twice a day in a hope to reduce any swelling, but after 24 hours of that, there hasn’t been any significant improvement.  Dad is calm and compliant with what the nurses want him to do, but his ability to judge when certain events about his body occur has been severely impacted.  His ability to recall things like dates and locations etc is quite strong, but Aggie suspects that this is more to do with mimicry than genuine knowledge.  His conversations are getting more and more confused/disjointed… for example he told Mum that he was waiting for the bus, when asked where he was going, he said it was going to take him around the islands.  He told the Doctor that he had major dental work that he was getting organised for.  It’s events like this that is going to shape what happens next.

Aggie said that the next step is likely going to be a family conference with the Social workers at Charlies to discuss where to go from here, and the likelihood of us seriously needing to investigate the likes of full time care for Dad.  Whether that is just general monitored (aged) care or full palliative we don’t know yet.

Aggie has also told us, that it is unlikely at this time that Dad will be going for his next round of Chemo which was due next week and although it was not specified, they have said they are going to keep him in for the next 3-4 days and I am 99.9% sure that they will use this time to get another round of tests done.

The nurses all love him, because he is polite, friendly and compliant with what they need him to do… so he’s in good hands.

As we were leaving Mum broke down a little when it hit her just how fast things have progressed and she told me of the fear that Dad quite possibly won’t be coming back home.  Talking to Lea about it, I said Mum’s worries and that it must be hard for Mum because back in ‘the day’ going into care was it… bam, you were effectively in an institution.  I don’t think Mum has had it sink in that care facilities today are so much more than just a drop and leave… they actively encourage where possible for clients to spend a day out with their families is possible.  So, I’m certain that if and when Dad does need more dedicated assistance, that there will be ample opportunities for him to ‘come home’… That and the fact that any placement we have will have the question… Can a beloved family pet come to visit 😀

So tomorrow we will find out when this family conference is going to occur… but there is something even MORE important to occur!  For the past few months Mum has been trying to get across to her hairdressers… but every time she’s made an appointment something has happened… most times it’s been Dad related.  So, tomorrow come hell or high water – Mum is making the most of Dad being in Charlies and she’s going across to the shops for a cranial weed and feed (trust me… the Lawrences and the Warburtons don’t cut hair… we weed!)

For now I am going to call my kitty back inside, and hopefully tonight I won’t have a chorus of “Oh no no no no” from two vocal locals… neither will I have a repeat of this evening when I looked out into the night and seemed to have the cast of the village of the damned looking back at me with their glowing, unblinking eyes.

Great!  Now that’s just the image I need to implant into my subconscious before going to bed!  Time to dig out the Disney!

Night All.  And once again, thank you for your kind wishes.

Yoli

A Skippers Tale XXII

Becalmed – again…

About two hours after I posted my blog last night, I had finally dosed off to sleep when the home phone rang… GAH!  Not good!!!!  I shot out of bed, nearly tripped over my cat and my bedding and raced down the hall swearing under my breath.

It was the Emergency Department doctor on call.  He was contacting us to try and get some firmer details about what was happening with Dad… apparently he wasn’t making a whole lot of sense when they admitted him.   Mum gave the appropriate information to the Doctor who did actually apologise for scaring the crap out of us and we hung up the phone… Well we were awake again… Time for another cup of tea!  Finally around 3am we went back to bed.

This morning we got up just after 8am and called through to Charlies for an update.  Dad was still in the ED as they were waiting for a bed to become free in the oncology ward to move him upstairs.  The duty nurse had said that dad was showing signs of confusion and the Neurological Doctor on call had bumped his dose of Dexamethasone from 8mg up to 16 (8 twice a day).  With reassurances that Dad was stable and comfortable, Mum and I did the ring around to let family know and then decided that we were going to do nothing… both of us had a crap night, so we decided that we wouldn’t go and see Dad until they had gotten him onto a ward.  Instead we went back to bed to try and catch up on some of the sleep we had missed.

A phone call at lunch still had Dad located in ED but at least they knew that he would be moved to Ward G41 (at some point) and to call back later that afternoon.  About this time we also had a call from my Uncle Shane saying all things considered he and Damon wouldn’t be dropping around that afternoon.  Given everything that has been going on lately with various calamities and stresses befalling both sides of my family… I’m starting to wonder exactly deities pockets the family seems to have peed into to earn their ire!

Mum caught another rest in the afternoon while I did what little shopping we needed… or more importantly the furkids needed, lest there be fangs and claws before tea time!  We called back later in the afternoon to confirm that Dad had finally been moved up to G41 and was in room 4.  Talking to the station nurse we ran down what we had been experiencing at home and she said, yes they had sort of gotten the gist of that hence they had put him in a room immediately opposite the nurses station so they would be able to keep a close eye on him… As Dad has been known to do a bit of non-directional wandering at home we mentioned that as well.  The nurse Natalie laughed and said… yup… this was what they suspected and another reason they have him in sight of the station.

So that’s where things stand for now.  I am waiting for my black beasty to finish her ablutions for the night… then I am going to bed.  We will be heading into to see Dad after 8.30 tomorrow morning and I will keep you all updated.

Thanks for your many kind words of love and support… it’s really lovely to read and very appreciated.

Yoli & Barb