A Skippers Tale XXXVI

Scuppered

Ever heard of the expression Deja Moo?  The feeling you’ve seen this shit before?  Welcome to my world this evening.

Had a meeting today with Dad’s Doctor and the Social Worker at Bethesda.  We’d been blind-sided a week ago when we had a call from Paula (the Doctor) advising us that were we are this was just a temp placement.  Well today we started discussing options.  I’m not going to bore you with the details but suffice to say Mum and I have found ourselves back where we started when Dad was first admitted.  Needing to find accommodation for Dad.

One thing that has changed is our understanding of what ‘concessional’ means in this scenario.  About 15 things depending on who you talk to….

The long and the short of it is, Dad has been assessed as having just over $260,000 in ‘assets’, so as a result that is the amount of getting Dad into a home would be… either that or pay a Daily Accommodation Payment of 6.5% ($655) per fortnight on top of a Daily living payment of $47.49 ($664) so in total about $1300 per fortnight in total.  Mum and Dad’s total income from their pensions is about $1400 a fortnight… it’s bonkers.

Overall, today has been one of those rare days when I have thought ***k it, I give up. I had to leave the meeting with the social worker at one point on the pretext of needing to go to the ladies… it was either that or burst into tears and slap the woman into next week.

We are sort of managing to keep the balls in the air, but the deeper we get into this, the more balls keep getting added to the act and I’m not sure just how much longer I can keep them up there.

Bed is calling and my eyes get heavy typing this…. I will go to bed and hope for some more energy in the morning.

A Skippers Tale XXXV

Ready the cannons!

Oooohkay…. Many of you, I know, have been wondering what the last cryptic post was about.

Now that I have had the chance to calm down… a little… I can explain.

When this all blew up, we were advised to apply for consideration of benefits relating to this illness and a couple of other things that Dad has never claimed for.  It resulted in me having to complete 4 lots of paperwork to send to 2 different parts of DVA because apparently Dad (like many of his comrades) fall under two different sets of rules… everything up to 1972 comes under what’s called SCRA, and everything after 72 is something else…

In their wisdom, DVA had two case officers handling the different cases… Case officer A) – we will call her “Betty” was handling the SCRA application which covered two parts, the Glioblatoma and ‘every else’ (chronic chest, ulcer, hearing loss etc).  Then we had case officer B) – let’s call her “Fanny” shall we!  Again her forms were broken down to Glioblatoma and a second one for everything else.

Betty, was a sweetheart.  She contacted us if something didn’t arrive, she asked questions, provided extra forms and even called me to get a better understanding of how we believed Dad’s Gastric Ulcer was associated with his service.  When she had made her decision she called me to tell me that the Chest issue (Chronic Bronchitis) was going to be accepted, but that unfortunately the the Glioblastoma wasn’t because based on their medical information that his service wasn’t seen to be a contributing factor… she went through and explained the fact we could appeal if we had additional information etc… and that the Ulcer case would have a decision made shortly once she’d been able to review my expanded paperwork.

Fantastic… brilliant…. we knew where we stood.

FANNY on the other hand appears to have just been one!  We received a blanket response from this person saying that all applications were being denied.  They even went as far as imply that if Dad had helicobacter pylori he should have applied for it when he left the navy… That would be a fine trick!  Dad left in 1982… that was the year that Professor Marshall drank a cocktail from a petri dish to help support his theory of how ulcers were formed… clinical trials of an antibiotic did start until the 1990’s and I should know as Dad was part of them!!!!!!!  Fanny even went on to say that Dad hadn’t had any recent instances so it didn’t matter.  Had they contact us we could have provided all the details we provided to BETTY… In fact… They should have had the information there on dad’s file after I did!

They also made a wade of other assumptions that were wrong, and we are now going to have to appeal all that…

They devil’s in the detail…

So now… on top of everything else I have to start trolling through Dad’s medical records to find out all the supporting information I can before i look at making an appeal.

To that end… with relationship to the brain cancer…. can people please let me know if you know ANYONE with military history who has passed away or has been diagnosed with a brain cancer.  I am trying to dig up information from the US as well – there is even a facebook page dedicated to Vietnam Vets who are suffering GBM.

That was number one.

Number 2… DVA contact us, again through letter, saying that based on Dad’s assets, we don’t look like we are eligible for any concessions for care placements… Frell

Number 3…  Sir Charlies may have led us up the Garden path… because we had a call from Bethesda saying that “did we know that Bethesda is only a short term palliative care service, also known as “transitional”?”  FECK ARSE SHITE! (This may not however be too much of an issue as Dad may be at a point of being ‘full palliative’ and in that case we might be able to get into Hollywood Repat or St John of God’s Murdoch…. watch this space.

So that’s where things stand for now…  We had intended to take Coco in to see her Dad today, but last night the poor baby pulled up lame on her right back leg, so it was a quick trip to the vet for some anti-inflammatory drugs and a day of rest for the puppy.

Now I am going to go back and fight with my uni assignment some more…

Yols

ADDENDUM… I have decided to participate in a fundraising walk happening in Perth in November that is specifically raising funds for brain cancer research… if you want to read about it.

https://www.walk4braincancer.com.au/my-fundraising/179/ozzyols-walk4braincancer-perth

A Skippers Tale XXXIV

Batten Down the Hatches Boys!  This storm’s going to be a bitch!

In certain circles, I am known by the name “Tempest”.  I chose the name because I have the uncanny knack of popping up from no where and leaving a trail of devastation and pain behind me!

Suffice to say, someone today read the weather forecast wrong.

At this particular time I am not in a position, or mind, to go into the particulars of what has gotten me cursing worse than anything you lot of Dad’s ilk could muster, but I will say this.

  1. It does have to do with Dad
  2. No, it’s not to do with his care or immediate health
  3. I am incredibly pissed
  4. for those who know me, I am currently conversing in slow – even – monotone…

As so as I have had a chance to cool down (or some might say warm up) and a chance to speak to a few people over the weekend/early next week I will post more details as I might need some assistance from people reading this…

So good night all

“Tempest”

A Skippers Tale XXXIII

A New Port

Yes people… Dad has been re-berthed… He is now located in Bethesda Hospital in Claremont.

On Thursday around lunchtime Mum and I had a call from the nurse at Sir Charlies advising us that Dad’s move to the Hospice unit at Bethesda was going to happen in the next couple of hours.

The what now?

Oh, didn’t they call you?

<<nash teeth>>  Um that would be no!

We knew that Sir Charlies were looking to speak to the palliative care team to see what could be done for Dad, but once again communication wasn’t their strong suit.  The good news is, Bethesda is a DVA approved hospital and this now means that Mum and I don’t have to do the great chase around for a placement in a home.

One other distinct advantage is… Bethesda is smack dab on the Swan River.

I was going into Perth that evening for a lecture event so I swung past the ward to see Dad in his new digs…. it’s such an improvement on his last one… He has an en-suite room to himself and he has garden and water glimpses from his window.  The best bit is that the patient lounge looks straight out over the top of the Claremont Yacht Club and the river… When Mum and I arrived yesterday, Dad’s bed had been moved into the room so he could sit and watch all the boats 😀

Oh, before anyone panics… Dad *is* in the hospice, but isn’t in any immediate danger as far as we know.  He has just gotten past the point where moving him to an care facility would be a bit redundant.

When we were first told Mum was quite a bit all for getting him transferred to Murdoch so that he was closer to us.  However, having seen Bethesda, and the impact that the change of pace and view has done for Dad, we think yes it’s more inconvenient for us… but far far better for Dad.

For those of you not familiar with Perth, if you imagined a square with Gosnells being one corner, Claremont would be the directly diagonal one with Fremantle and Perth being the other corners.  Either way, if we go through Freo or Perth the distance from our house to Bethesda is about the same 31km.  What is going to be the determining factor for our travel is the congestion on the roads at any given time of the day.

Since moving there Dad has been quite the social butterfly.  In addition to my visit on Thursday and our visit on Saturday.  Dad has also had a visit from a former recruit who joined the same time Dad did back in 61 at Leeuwin, and then today we learned that Auntie Jane and Uncle Shane and done another flying visit up to see him too… he’s in demand.

But for now we are a bit relieved, but the pressure is still on.  We have a visit from Franco the Navy Chaplin this week, and several other events planned.  We are trying to get as much things in place and finalised while Dad is still with us so that it will make things easier when the time comes.

One final thing… I know I posted this on Facebook recently so I apologise if you have seen it twice, but… recently some of Mum and my conversations have reluctantly turned into… “When there’s just the two of us” (our code for Dad passing away). Some are serious, some not so much… the other night’s conversation falls probably into the latter.

“I was just thinking… When it’s just the two of us… What are we going to do with Dad’s Study?”
<<pause>>
<<in unison>>
“I know/I was thinking…. Library”
<<look startled at each other, and then crack up>>

A Skippers Tale XXXII

Run Aground.

When we last spoke, Dad was doing his dangdest to be stubborn and not eat.  The good news is, that didn’t last long.  Once the Nurses were made aware of Dad’s shenanigans they made sure that someone sat with him while he ate his meals.  This however was not before they discovered the plastic bag that he had been hiding various food bits in… open food bits… several days old open food bits…. oh yes… and his mobile phone!  I’m not sure that Samsung covers for moldy yogurt damage <<roll eyes>>

Honestly the reason I haven’t posted anything lately is the simple fact that there wasn’t that much to tell until recently.

We are still waiting to see if we can get a placement for Dad in a facility, but it’s like pulling teeth.  One care place had the audacity to suggest that as we owned our home we could sell it to get Dad into a private placement…. um, we still live here… well you can rent can’t you?  Oh FFS!

Other suggestions have been made including we could perhaps get a Mortgage on our place.  Now, while our home would probably provide suitable equity the problem would be neither Mum or I currently have a ‘wage’ to speak of, and I don’t care how nice and friendly the banks may seem… there ain’t no WAY they would come a half a million mortgage even if we were both working!

Setting aside the concerns I have for Dad, Mum has been foremost on my mind for the last week or two.  As some of you may know, we nearly lost Mum to Pulmonary Embolisms and Atrial fibrillation last August.  So, congestion on the lungs for Mum is dangerous… she’s already been admitted post issue once with pneumonia.  So when Mum developed a deep rattling cough I had to badger her into going and seeing her Doctor who put her on a course of antibiotics.  Mum and antibiotics have a very tempestuous relationship… neither one likes being in the others ‘presence’ for any period of time.  I swear her Guts break out the little white flags after the first couple of days and say enough is enough… Add to this about the time this flared up Mum had a blood work up done as part of her annual tests, to find that her Diabetes was higher than usual, so her specialist put her on soluble diabetes meds that came with a warning that it could do a number of the stomach… Suffice to say Mum was not a happy camper.

Her normal GP put her on the non soluble version of the tablet in a hope that it would stop the upset tum, but it did no good.  Now, during all this, I noticed a couple of things… 1) Mum was complaining of blurry vision, 2) her thirst was constant, 3) she would feel light headed.  I finally got her to do a prick test with her kit only to find that her sugar levels was up around 24!  Shite!  If she hit 8 or 9 in was commented on by her GP.  So Friday just gone I said enough was enough and made an appointment for Mum to see her GP… this was getting ridiculous… at the rate things were going Mum was going to end up in Hospital herself.  (Upside, I could have perhaps asked for them to have adjoining beds!).

So through this all, while caring for Mum, we were trying to get in to see Dad as much as we could.

So today when we went in, Mum got bailed up by one of the nurses to say that we weren’t coming in often enough!  All I can say is that I am very glad that it was Mum and not I that was lectured to, because I think I would have given the nurse a smack in the gob if she’d come at me with that.  Like we aren’t guilty enough about not being able to be there with Dad more often!

Like it doesn’t tear us to go in to see a man who has been so robust in his life only to find him so frail and diminished.  He now need someone to help feed him and two people to help him move and get his ablutions done and we were told today that they had to send him down for a chest x-ray because sometimes his swallowing reflex wasn’t working fully and that water was getting down into his lungs.

We don’t even know if he can remember our names… when we ask him if he knows who we are he says yes, but doesn’t say our names….

Talking to the doctor this afternoon, he is going to speak to the palliative team about Dad’s situation to see if the whole fiasco of getting a care placement is even going to be needed.

And to top this all off, I was advised yesterday by Dad’s case officer, that DVA isn’t going to accept our claim over this tumour as according to an independent oncologist “This type of tumour wasn’t associated to the patients service”  Despite the fact that the Navy accepts that Dad was routinely exposed to hazardous materials including the likes of Asbestos, Lead Paint, Diesel, Ionizing Radiation etc.  So now I have to wait until that arrives and start trying to dig up examples, cases and numbers of veterans who have been diagnosed with this type of tumour as we are already aware that anacdotally there is a higher prevalence of it in service men.

Anyway… I am waffling and I am tired… so I will wrap this up for this evening and thank you all for reading.

On the subject of visiting.  It is just not feasible for Mum and I to make a trip into see Dad for every day of the week and so we would like to encourage anyone who might have a bit of time and be around the Nedlands area to drop in and say hi to him… we can’t be sure that he will remember your visit the next day, but I think it would be stored somewhere in his deep memory and it would help us out no end.

much love

Yoli (and Barb)

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

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