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.

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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)