Residential Aged ‘Care’

I write this in a state of mild rage and frustration.

Over the last two weeks The Australian newspaper has published articles about the state of the Aged Care system in our country.  Last weekend Rick Morton wrote an article titled ‘Adrift in the Uncertain Market For Aged Care’ and this weekend Andrew Burrell wrote ‘Families Demand Action over aged Care Standards‘. This article is currently paywalled but I will link to it in due course.

It seems the corporatisation of the residential aged care sector, much like the child care sector ( and I use the word ‘care’ lightly in both cases), has resulted in reduction of qualified staff, appalling staff patient ratios, and a quest to make millions out of  people least able to speak for themselves, in order to please shareholders.

Some of the examples in this morning’s paper and other investigations are horrendous:

  • A woman, whose husband has dementia, drives 40 minutes each way several times a week to visit him, and found him one day, half-naked, sitting in a chair covered in his own excrement.  He was not in his room – he was in a public area.  She doesn’t know how long he was there.
  • The same woman found him one morning in a sodden incontinence pad, and blood on his sheets from a tear in his scrotum.
  • Elderly patients left on toilets for hours due to staff shortages and fed pureed party pies in order to cut costs.  You can read that horror story here.
  • A resident having urine soaked sheets thrown at him; a resident being made to walk, while screaming in pain, with an undiagnosed broken thigh bone; a resident with undiagnosed pneumonia being taken home only to die a week later.  Those stories from 2015 are here
  • A resident in his mid-eighties left in urine soaked chairs, bed and adult diapers several times, then being sent off to have a circumcision as he kept getting urinary tract infections, and the facility’s doctor thought they would decrease if he was circumcised. The surgery took place while his penis was infected.  He died in agony 6 weeks later after contracting blood poisoning.  He was my maternal grandfather.

Sadly, a Google search with the words ‘Aged Care horror stories’ brings up pages of results.

My own observational experience, as Power of Attorney for my former neighbour, who is now in a nursing home, is not pleasant.  It is a lovely looking facility – lovely grounds, modern and large rooms, aesthetically pleasing.  But they are chronically under-staffed and in the last two years staff have changed so significantly that I rarely see or speak to the same person twice.  Most of the staff are ‘aged care workers’, and English is rarely their first language.  If I can barely understand them, how can elderly, often hard of hearing residents cope?  In a 6 week period she went from being able to get around on her own on a wheely walker, to requiring a hoist to get her from the bed to the bathroom.  Once in the toilet, she then had to wait for someone to remember to come back and get her off again.  No one had called me, but it was obvious to me something significant had happened to her in that 6 week period to cause such a change in mobility.

I firmly believe that there needs to be an emotional connection between the elderly person and the carer or carers in order for appropriate care to be given.  All of the stories above are from relatives of the resident – what happens to those who have no one to look after them, or advocate for them?

This is why I am determined to keep my own father in his own home for as long as humanly possible.  A nursing home is absolutely a last resort.  With the help of providers of in-home care services, this will be possible.  For how long, I don’t know. But I hope and pray that his last days will not be spent in any discomfort feeling like no one cares, while shareholders of listed companies in the business of aged care check the stock market every day.

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Bureaucracy gone mad Part IV – It’s not over

In the early hours of Boxing Day 2016, Dear Old Dad had a fall while feeding Oscar Prince of Cats. Most people would cover their ears at 3am if their cat decided he was hungry but not my Dad.  As he leant down to put Oscar’ food on the floor, he lost his balance and fell hard, fracturing his wrist. But it wasn’t Oscar’s fault. 

That is the preface to this sad and frustrating story. My Uncle, who had been visiting recently, and who is also quite handy, suggested a grab rail on the wall of the kitchen where Dad leans while putting the food down.  Brilliant!!  Why did I not think of this?  I love it when a fresh pair of eyes sees a situation and thinks of a solution. My suggestion that Oscar be fed on the kitchen bench was unsatisfactory – for a number of reasons obviously.  

Genius

In hindsight, it was an act of purest optimism to make the call I then made. There is a quite useful company called Home Assist, which provides subsidised services for the elderly on limited incomes. In our local area, Home Assist is managed by Communify. They had arranged the installation of a grab rail for the toilet, and  a hand railing next to the front stairs, when Dad first moved into his current home. 

So I called and cheerily introduced myself, identified my father, and proved who I was to enable me to speak to them on his behalf.  This is how it went down:

Me:  I would like to arrange for a grab rail to be installed on a wall in my dad’s kitchen.

Janice (not her real name):  I see. Let me check the availability of our occupational therapist to come and do an assessment. 

Me:  (momentary silence while my heart sank, my teeth and fist clenched, and tongue sharpened). I believe he has already had an assessment for this very purpose.

Janice:  How long ago would that have been?

Me:  Approximately 5 years ago – when he had other handrails installed.

Janice:  Oh well, he will need another one. 

Me:  (momentary silence while I rolled my eyes, and took a deep breath). Janice, do you think he has become more agile and less frail between the ages of 89 and 94?  Is this really necessary?

Janice:  Yes. That’s our procedure. 

Me:  (optimistically). Could I send you the ACAT assessment report from just last month to save time?

Janice:  No we have to do our own assessment. 

Me:  (momentary silence, while I close my eyes and unclench my teeth)  Well, I guess I’ll just organise my own tradesman to do it at great expense. I don’t really want my dad to have yet another person coming in to his home and asking him the same questions other alleged service providers have asked him.

Janice:  Well, it that’s what you prefer to do. 

Me:  (sarcasm dripping from my voice). Thanks so much for your help.

I mean – really?  How hard do government subsidised agencies have to make it for the elderly and their carers?  Why would they need to send an occupational therapist out to visit him again, ask the same questions they asked before, to get the same answers, to tick a box, to allow someone to organise a tradesman to come and do the work, when it has been done before?  To keep people in a job?  Imagine how often this happens?  How many elderly people don’t bother because it’s too difficult?  Or takes too long?  I despair, I really do. I thought I was done with the bureaucracy but apparently not.   I don’t expect I will be done for a while either, regrettably.

You can read Parts I, II and III in this series here, here and here.

As it turns out, my handyman works for Communify, and laughed when I told him the story, and expressed some sympathy for my position.  We have already made a time for him to come over and install it.

Honestly, I would take a tranquiliser if I could just unclench my teeth.

pills

I’m always wasting a good worry.

I can’t recall what made me start being a worrier. My mother once told me that I was born looking worried, but personally I have yet to meet a newborn that doesn’t look like it is terribly concerned about the conflict in the middle east, or the current economic crisis.

As a child, a trip in the car meant that I worried about running out of petrol. A school camp meant I worried about the weather, that I would be cold, or that something would happen to my parents while I was away. Our parents saying we needed a family meeting meant that I worried they were going to tell us they were getting divorced (honestly – they never argued, showed no signs of unhappiness, but that was my first thought).  I read a book once about a young woman with leukaemia – from that moment on, every bruise made me think about the fact that this was the first sign of the disease.

At school I of course worried about exams, my uniform being right, getting a detention (never happened), and that the train bridge across the Brisbane River would choose the very moment my train was going over it to collapse, plunging the train and all of us in it into the Brisbane river. Twice a day five days a week I worried about this and had an escape plan every single time.

I loved the Peanuts cartoons and especially Lucy Van Pelt. In one of my favourites she is talking to Schroeder, telling him that she had worried about an exam all week. She worried and worried and worried and got an A. In the final frame, Lucy says “I wasted a good worry”. This, it seems, was to be my life’s story.

When I became a mother there was so much to worry about I couldn’t possibly list them all. I worried someone would break in and abduct the baby while I was in the shower. I worried they were eating too much or not enough. I worried that a visitor with a cold would end up in a hospital visit for my child.

I’ve not stopped being a worrier, but at least now I more often than not can tell when I’m doing it unnecessarily. And I have a swathe of quotes about worrying to remind me why I shouldn’t:

  • Worry is like a rocking chair, it gives you something to do, but gets you nowhere.
  • Stop being afraid of what could go wrong and focus on what could go right
  • Worrying will never change the outcome
  • Worry is a misuse of your imagination
  • I’ve had a lot of worries in my life, most of which never happened.

Note – worrying may not change the outcome but I’m confident I’ll be the best prepared in an emergency.  if it happens

I started looking after Dad when he was 88 and to be honest he did not need a lot of looking after then. When Mum died he lived a 45 minute drive away but I made the trip there times a week to drop off meals and assist with the odd thing with which he needed help. But the endless worry about him started the day Mum died. What if he fell and couldn’t call, What if he calls an ambulance and they can’t get in to the house?

As he has become older there are more things about which to worry, which seems to correlate to the level of his movement and independence and general health. Thank goodness he does not have dementia!

  • I worry about him being lonely
  • I worry about him hanging the washing out, as it involves walking down three stairs
  • I worry that, if he hasn’t answered the phone, he is lying on the floor unconscious
  • I worry if he gets a cold, assuming it will turn into pneumonia
  • I worry that something will happen to him when I am away, which means I don’t go away very often unless someone is available to care for him
  • I worry he will fall down the stairs at church
  • I worry about him being too hot or too cold
  • I worry about him falling in the bathroom
  • I worry how he will cope every time there is a change in his circumstances
  • I worry about his finances
  • I worry about the need for him to one day go into a nursing home

I DON’T worry about him driving or any other people on the roads any more thank goodness, as that particular avenue of pleasure has been voluntarily given up. He does however worry about my driving. Maybe it’s genetic.

When he broke his wrist a few months ago I worried about EVERYTHING – how would he dress, undress, shower, eat, balance, cut up Oscar’s chicken meat.

As it turns out, most of the things I worry about are wasted worries, and as I cheerily tell him (while not always believing it myself) – every problem has a solution!

We had an intellectual discussion one day, Dad and I, about the concept of worry and anxiety and he told me that his father had often quoted something to him and his brothers about worry – he couldn’t quite recall the whole thing but said part of it was ‘worry is rust upon the blade’. So out came my iphone for a google search (he always marvels that I carry an encyclopaedia around with me) and I found the quote:

worry

I have left the quote ‘as is’ without attempting to make the language gender neutral.

So what to do? I accept that I am a worrier. I notice when I am worrying and practice not catastrophising to the worst possible scenario. I certainly don’t (to my knowledge) show Dad that I am worried about anything to do with him.  I have started practising meditation to slow down my brain and stop the thousands of small but annoying worries that flit through my bring each day.  As it turns out meditation is a skill that takes a lot of practice.

Worrying about our loved ones is natural.  Oddly I do not worry about him dying – I know this will happen; but it is because I know Dad is not at all worried about dying.  He has such a strong faith and I do believe he is ready.  I just hope he goes to sleep one night and when I don’t get my 7.30 am phone call to let me know he is up and about, and I check up on him, that I find him looking at peace, in eternal sleep.

Lost and Found

I spend a lot of time looking for lost things.  My own, my husband’s, my childrens’.  And especially my father’s things. Mostly I am looking for other people’s belongings, not my own.  After all it is not really lost until Mum can’t find it.  Inevitably – and often quite quickly –  I am successful, but Dad’s garage door remote control defeated me.

When Dear Old Dad gave up driving just before Christmas, I took one of his garage door remote controls to keep in my car, as collecting him for an outing, was much easier if I could drive into the garage, and also easier for him in terms of stairs to be negotiated, concrete ground and shelter from the weather.

This has worked well for a long time until the great meltdown of 2017 where I found that I was having to drive Dad somewhere every day, and sometimes twice a day.   Dad goes to church twice a week; Wednesdays being one of those days.  Uber became the preferred method of transport, once I discovered you can pre-order Ubers.  And then I found a local Uber driver who became a regular driver for Dad. Everything was coming together nicely.  [insert evil genius laugh]

However we have had lot of rain  cyclone blow through town recently and it was necessary for the Uber drivers to drive up Dad’s very steep driveway and into the driveway to collect him. This required Dad to open the garage door with his remote, and take the remote with him to open it again on the return trip.  What could possibly go wrong?

Last Wednesday, the Uber driver collected Dad for church, and I collected Dad from church to take him to a medical appointment. And then we went home, driving up into the garage using my remote control to open the door.

Some days later, he announced that he had lost his remote control.  We retraced steps.  He had used it on Wednesday going to church.  It had been in his pocket.  But didn’t use it on the way home.  I called the driver – not in his car.  I got on my hands and knees and inspected under the seats in my car.  No sign.  Called the doctor’s surgery. Nothing handed in.  Called the church – not there either.  All of this convinced me it was in the house.  I checked the pockets of every pair of pants he owned.  I looked under the bed. In the bins.  Under the desk.  In the corners of couches.  Under papers on the desk.  In the kitchen drawers.  Behind the filing cabinet. In the freaking garden.  It was nowhere to be found.

So I did what any sensible person would do – assume it was lost forever, assume the other one would one day go missing and immediately reach for my phone and google the remote to purchase a replacement.  And I found it immediately on a specialist remote control website.  In fact, they could sell me a generic remote for less than half the price of the real deal.

I love a bargain.  So I bought two, assuming again that at least one would be lost in the future.  It’s why I have a spare wheeling walker in storage and a spare walking stick.  Just in case.  Doesn’t everyone prepare for the worst like this?

After just a couple of days the new remotes arrived and I went back on the website to download the instructions to get the remotes to sync with Dad’s garage door.  It was at this point that I noticed, in very small writing ‘Do not purchase this remote if your remote has the words ‘Merlin +2.0’ on the front.  I knew – I just knew that when I glanced down at the remote in the coin tray in my car what I would see.  Sure enough:

 

remoteremote

I was in the car, parked by the side of the road.  I’m sure the people passing by heard me beating the steering wheel.  Should this not be written in LARGE RED LETTERS rather than small writing as an afterthought?  I called the remote company hoping perhaps there was a mistake (idiot).  Nope – patiently, the man in the ‘people who don’t read instructions department’ explained  I had to send those ones back, order the proper one, pay for it plus express post and I’d be right.  Of course the legitimate remote was twice the price.  I helpfully suggested that they use the LARGE RED LETTERS idea on their website.  He didn’t respond.

Wearily I pointed out to Dad that I had made a mistake but the new remote would be with us soon.

That night we had the family all together for dinner.  I was relating the saga of the lost remote and my son, who had driven Dad to and from church the previous Sunday said ‘Is it black and green?’.  It was in his car.  Dad hadn’t used it on Wednesday; he had not used it since Sunday.

Meanwhile, two new wrong versions of the remote were paid for, sent back with a begging letter for a refund, a new, legitimate remote ordered, paid for, with express post, while the ‘lost’ one, which was never in fact lost, had been sitting in my son’s car, while I went slowly demented trying to find it.

#justkeepswimming

 

 

 

My Father’s Gifts

Today is my birthday.  I am 55.  55!  How did that happen?  It doesn’t seem that long ago that I was turning 21.   My father was almost 40 when I was born so it is always easy to remember how old he is.  He did not marry until late (well, in those days, 30 was considered late), so consequently Mum and Dad’s  four children, including the first who died  were born over a 9 year period until his 40th year.

dad and me

Aren’t we adorable?

My day started today with a cup of tea in bed with some sourdough bread toast, and the paper, one of the cats and the dog in the room with me, and a gift from my husband.  I stayed in bed for a while – a rare occurrence.  But I did get to see Dad early, as today coincided with the need for the ulcer dressing change that has to happen every two days.

He greeted me with his beautiful smile and a big hug as he said ‘Happy Birthday’.  I took off the dressing and sent him off to the shower, then fixed him up afterwards.  This ulcer business is SLOW.  It is almost closed but after four months, it feels like it is going to take another four months.

I was not in a rush so stayed for a chat.  He told me that while he was waiting for me to be born, he was practicing making jigsaw puzzles.  Someone had given him an old sewing machine that had been converted with some sort of small saw, to enable it to make jigsaw puzzles.  ‘I was getting quite good at it’ he said.  But he was interrupted by the doctor telling him he and Mum had another girl.  He said he didn’t finish the jigsaw puzzle.

A few days ago he pondered what he could get me for my birthday.  At 55 I don’t think Dad needs to be bothered with worrying about that any more because I can honestly say there is nothing I want or need at this age.  But it got me thinking about the many gifts he has given us or taught over the years and here are just a few of them:

  • Education is important  – Dad is a very intelligent man.  He topped the nation in Greek studies at some point.  He still knows his Latin Roots.  He can intelligently discuss any subject (except perhaps how a computer or iPhone works).  A good and well rounded education was very  important to our parents and all three of us have in turn made sure our own children have had the best education.  Dad did not earn a lot of money as an Anglican priest, so to put three children through private schools was always a stretch and they sacrificed a lot to get through that very expensive time.  We have all had successful careers due to that good start in life, which means we are now in a position to help him out financially if he needs it, even though he doesn’t want us to.
  • Values – Dad has always had a strong faith and strong values.  While we may not have always followed them or been true to them, we always come back to them.  He has never wavered.  A fair few CEOs and politicians could take a leaf out of his book about how to live values and values based leadership
  • Resilience – my goodness he is resilient. My sister keeps reminding me of how resilient he is, whenever I am fearful of the impact of some change on him,  and I wish I had that strength of character, or at least to that extent.  When I think of how much he has been through since Mum died and how much change he has coped with my heart bursts with pride.  He has taught me that the sun will come up after a tough day, and to have faith that things will get better.
  • Budgeting – my husband and other family members will laugh at this one but honestly he has taught me this.  I remember each week he would write up a little book – every pay had a particular sum of money allocated to different things, and I started doing the same almost 20 years ago for those regular bills like rates, electricity, school fees and also christmas presents so that we didn’t have a hideous surprise in January. If I didn’t want to use the shampoo and conditioner they bought, I had to pay for my own.  As soon as I started a part-time job, I had to pay a small amount of board (which I later found out they saved to pay for my wedding).   I opened his mail once while he was away and his electricity bill was so small I thought it was a mistake.  I commented on this to one of my kids who said ‘yeah it’s really weird – grandad only ever has the light on that he’s using’.  Quite!
  • Reading is the best entertainment – he still uses his library card at the age of 94.  And reads the paper every day.  And writes to politicians.  It is a bit sad that he has never learnt to uses an iPad or a computer as he would be reading things on it all the time!  Reading was a night time ritual for us all – and I could read before I went to school; not because I am so smart, but because my parents or siblings would read to me every night.
  • Cards and other games are also good entertainment – we were a big card and board game playing family, as we didn’t acquire a television until I was about 8 years old.  One that required one to get up off one’s arse to change the channel to a selection of only four channels .  In black and white (Yes I am that old).  When we get together we still play cards.  He is a cunning old fox with cribbage and scrabble and it is hard to beat him.  Family lore has it that Dad would only read the scores out when he was winning.  He also taught me to be competitive.
  • A smile will cure most ills – Dad has the most glorious smile; one that always reaches his eyes.  On the few occasions that he is grumpy, he will always find something to smile about.  That resilience thing in micro.

There are many other things of course – these are the ones that spring to mind when I sat down to type.  I used the following quote at Dad’s 90th birthday party.  I remember looking for the perfect quote about fathers, and found it.

How lucky are we to have had a father like this?

 

kelland

Bureaucracy Gone Mad- Part III (A Story of Hope and Redemption)

Where we last left off, I was left waving a white flag trying to get some assistance for Dad to shower when he had a broken wrist.

We struggled along and after a couple of hiccoughs disasters with a reaction to a new dressing then an infection, his ulcer started slowly improving and the dressing only needed changing every two days.  I decided to do this myself without including XYZCare, thinking it would not be too long from being healed.  Six weeks later and that damn ulcer is still not completely healed.  BUT Dad is happier and I am able to do the dressing change first thing in the morning for him.

However, for me, what had been once ‘popping in’ to see Dad once a day,  dropping dinner down and having a game of cribbage, became several hours a day some days, with shopping, visits to the doctor, chemist, bank, the library, church, haircuts etc etc. Coupled with ongoing chronic pain I was starting to struggle.  I know how lucky I am – my Dear Old Dad says ‘thank you’ to me every single day, and is rarely grumpy or cranky, and his big smile, even in dire circumstances, makes me happy. But I knew I needed help.

I had been following the story of Five Good Friends* since its inception – it seemed to me to be a home care service with a real service mentality.  As Dad had already been approved for a Level 2 Home care package through ACAT, I gave Five Good Friends a call to find out more and they were able to explain exactly what it meant, how much it was worth and what it would cost Dad, or me. Which was nothing!  Not only that, but I had a real person to talk to, who gave me her mobile phone number and email address.  No pressing ‘1’ for this or ‘2’ for that and talking to a different person each time.  I was sold on their model and their very real service mindset for the elderly people their carers look after, and the technology they were going to be using for us to be able to communicate directly with the carers coming to help Dad.  The new Consumer Directed Care rules from February 27 this year, made choosing the care provider easier and meant that all care could be provided by the one organisation even if not necessarily the same person, depending on the tasks.  It helped enormously that the two ladies who came to visit, both admired Oscar.  That pretty much sold Dad who was originally a bit dubious about having strangers coming in to visit.

But wait! (of course).  As we had not used the approved package before, I had to call My Aged Care (horrors) to activate the package.  Thinking somewhat foolishly this would be an easy process, (yeah, you’d think all optimism would have been destroyed by now) I gathered all of Dad’s and my identification and referral numbers, took a deep breath and made the call.

In short, because I wanted the care package to start soon-ish because of some medical treatment of my own, this elevated the request to ‘urgent’.  Which meant that they had to do a WHOLE NEW ACAT TEST.  WHICH WOULD TAKE 1-2 WEEKS.  I am not making this up.

So, I wearily asked the person on the phone, Dad has to have another ACAT test, where he will be asked the same questions, and all but about two of the questions would have the same answer, in order to activate a service that had already been approved?  Yes.  Yes that was and is in fact correct.

I *may* have sworn.  I *may* have referred to the system as a total waste of taxpayers’ money, while assuring the person on the phone I was not upset with her at all, but the dreadful system she worked in.  She agreed with me and said it was all terribly complicated.

The absurdity of this situation officially reached peak levels.

So My Aged Care activated another plan, the Commonwealth Home Support  Package service,  which they were able to do with the push of a button, with the referral going through to Five Good Friends straight away. They will choose an appropriate person for Dad based on his needs (as discussed) and introduce him or her to Dad.   Once ACAT is done (again) and the level 2 home care package approved (again), his approval will go into a queue. The carer won’t change but new forms will need to be completed to change over from the current CHSP

And we will be underway.  Even Oscar is exhausted by the bureaucracy and felt the need for a bit of hand holding.  I can feel my teeth unclenching and my shoulder blades starting to unhinge from my ear lobes.  The relief is palpable.

 

Oscar

It will be alright

 

* #notsponsored #justverygrateful

Bureaucracy gone mad – Part II

For those playing along at home, we left off at XYZCare, coming out to see Dear Old Dad to ‘assess’ him in relation to his need to have his ulcer wound dressings changed on a daily basis.

A couple of mini dramas catastrophes followed the ulcer scenario.

Two weeks before Christmas Dad had a minor car accident. Thankfully with a wall. Fortunately, no one was hurt (and it could have been much worse) but having thought about it, that was the event that made Dad decide to give up driving. He had resisted gentle entreaties, and was loath to give up his independence but we assured him that we would put things in place to make sure he could get around.  And he got around a lot for a 94-year-old.  So transport became an issue.

Then, in the early hours of Boxing Day he had a fall and broke his wrist. The emergency room staff sent him home with me and my sister (who was visiting with her family at the time)  with some tape he could use to tape a rubbish bag on his arm (his right arm of course) when showering.  My sister and I exchanged knowing glances, but she helped Dad every day get the bag on to his arm.

Dad was coming away on holidays to the beach with us, so he had company,  people to play cards with, my sister to flog at scrabble,  and also people to drive him around and assist with the showering process, as well as the wound dressing. It is not very dignified to have your daughter help you getting into the shower but manage we did. Thank goodness for my sister’s presence, help, patience and willingness to be flogged at scrabble every day.

Having his right arm in a cast did not interfere with his ability to enjoy the beach and a glass of champagne with his daughters, and, fot the most part, did not dim his glorious smile.

Dad - deckDad - beach

 

My sister and her husband took him back to Brisbane with them and they extended their stay in Brisbane until we got home from our holiday, as we did not want him to be on his own.

On Monday, 3 January 2017, while I was still at the beach, and as planned, I thought I would make a quick call to add assistance with showering to the ulcer wound dressing.

Stop

On that day, there were a total of 20 phone calls between me, My aged Care, XYZCare and the ‘assessment’ team they used, recorded on my phone.

You see, supervising or assisting with a shower is not a nursing duty. The nurse that was coming daily was not allowed to do that. And because this was a ‘new thing’ (the broken wrist), XYZCare needed to do a new support plan to put in place the sending a different person to assist with showering. Even though the ulcer wound needed to be dressed immediately after showering.  Wearily I pointed out, several times, the sheer lunacy of this situation, and the added stress for Dad (and me) trying to make sure it was all done correctly and with a minimum amount of time and fuss.

However we never got there – the twenty telephone calls included a necessary call (actually about three calls) to My Aged Care to get a new referral. And to have it marked urgent. This was sent to XYZCare head office. It then had to be sent to the local office for them to implement (as per the initial request mentioned in the earlier blog post).   Literally  – 20 phone calls to and from various agencies involved in aged care and I am still waiting for a return phone call from XYZCare as to how this could be implemented. I waved the white flag, purchased a special waterproof sleeve on the internet that Dad could manage to put on himself, and hoped, that with my help, he could manage and not fall before the nurse came.  But one very kind nurse ‘took longer’ than she needed with Dad and ‘accidentally’ was there at the time Dad needed to take his shower, on the days she was rostered on.  Bless her for that small act of compassion and kindness.

Honestly, I would have started taking calm down pills if only I could have unclenched my teeth.

I have previously mentioned Yes, Minister, and I cannot help but wonder at the number of people employed in the behemoth of the aged care industry, to fill in endless forms and the  cost to the pubic purse. How much better could the money be spent on the actual people who need it?

“The public”,  said Sir Humphrey,  “do not know anything about wasting public money. We are the experts”

Next – Part III – good news in the form of private enterprise and Five Good Friends (aptly named).

Bureaucracy gone mad – Part I

One of my mother’s favourite expressions, articulated with great regularity while I was growing up, is that ‘patience is a virtue’. This is because I am not naturally a patient person and have been known to express my frustration loudly on occasion, even as a child.

My experiences as a grown up, navigating the bureaucracy of Aged Care in this country, have tried my patience to the point of frustration more times than I can count. And there are so many frustrations this blog post is going to have to be a series, not just one.

I hate that I occasionally cry out of frustration – it seems so shrill and weak. It is like all the patience has been sucked out of me leaving a vacuum that only loud, angry and ugly tears can fill. It comes to this I think because the high expectations I have of service providers are not met, especially at times of already high stress. In the case of Aged Care, it happens far too frequently.

As Shakespeare once said:

Expectation is the root of all heartbreak.

Some years ago, Dear Old Dad had the misfortune to contract shingles – in his eye of all places. We got on to it very quickly and while it was very painful, he bravely put up with it, along with the news that ointment had to be applied 4-5 times a day. Because he has shaky hands, he couldn’t manage this himself, although his cheeks, nose and ears managed to get some of the good stuff. Working full-time, it was only possible for me to do this for him morning and night. His GP wrote a referral to an in-home aged care service provider, let’s call them XYZCare, and arrangements were made for a nurse to pop in twice a day to apply the ointment. ‘Simples’, as the meerkat on TV says.

Things have changed significantly since then with the advent of a Behemoth called My Aged Care, which has created a level of bureaucracy, form filling and tail-chasing that would make the writers of Yes, Minister proud. In the words from their own website:

“The My Aged Care website has been established by the Australian Government to help you navigate the aged care system. My Aged Care is part of the Australian Government’s changes to the aged care system which have been designed to give people more choice, more control and easier access to a full range of aged care services.”

The emphasis is mine.  Sadly, the fact that ‘navigation’ is needed at all speaks volumes. It has not been mhy experience that access is easier.  In fact from an outside perspective, it appears to have made it much more difficult.

Somewhat fortuitously, being the practical person he is, Dad mentioned about 12 months ago, that should it be necessary for him to go into a residential aged care facility (let’s not call it  nursing home) at any stage, there was a particular one in which he would like to live. Having had some experience assisting my elderly neighbour with this process, I knew it was not as simple as ringing up and asking for a room, as you would a hotel. So an ACAT (Aged Care Assessment Team) assessment was organised, through My Aged Care (sobs), and I helped him complete the 28 page means test form, via another government department , both of which were sent off to the nursing home residential facility for his name to be put on the list. This took quite a while as the ACAT assessor didn’t come for several weeks. I gather they are very busy. And the fact that I really really do not want Dad to ever go into a nursing home residential aged care facility so the forms sat on my desk for some considerable time.

Most importantly, once done, the ACAT assessment approved Dad for a number of things including residential care, respite care, in–home nursing care, as well as an in home domestic care package. Until recently we had no reason to avail ourselves of these services other than nursing care.  And Dad did tell the assessor that he didn’t need any help anyway because he had me, and he doesn’t like being a burden on the taxpayer.  Bless.

When Dad developed an ulcer on his leg last year, it became necessary for daily dressing changes. Optimistically, I called XYZCare who had previously assisted Dad with his ointment, to get the ball rolling, and said, again optimistically, that I would get the referral from the GP as soon as possible.

Stop

 

This time, (and every time in future), I was told, I had to call My Aged Care, wait on hold for a period of time then be transferred a few times, get a referral from them for the nursing care, which was sent to XYZCare’s Head office, who told me that the local service provider (whose phone number I had) would then ‘pick up’ the referral from their system. I asked that it be designated urgent, given that the dressings had to be changed daily, commencing immediately.

The local XYZCare office is a 15 minute drive from my house, yet this process took a whole week (I would hate to think how long non urgent requests take)  and after three increasingly agitated telephone calls from me, before I had a call from them.  In the meantime, Dad to the local GP to get the dressings changed daily.

But wait, there’s more.

Even though he had previously been a client, they had closed that file, so had to come out and ‘assess’ him (even though we had a specialist report on the ulcer and its care, and the ACAT assessment), before the services could be put in place. My eyes rolled so many times with each phone call and delay, I swear I started seeing behind my own head.  Dad also didn’t understand as most of the questions were the same questions asked by ACAT.

This is not a criticism of XYZCare, but of the tangled red tape and hoops they, and the elderly they are trying to help, have to jump through, to get services in place.

Things went downhill from there. Part II coming soon.  Suffice to say my desk has a dent in it.

bang head

 

The Circle of Life

All my life’s a circle, sunrise and sundown
The moon rolls through the nighttime, till the daybreak comes around
All my life’s a circle but I can’t tell you why
The season’s spinnin’ round again the years keep rollin’ by

Harry Chapin

A few years ago now I wrote an article that ended up being published on Mamamia.  It was the story of the first few days after my mother’s death and the discovery of a suitcase full of things she had kept of the work of her three children, letters between her and dad, and her and my grandmother.  It was a surprise as my mother did not appear to be overly sentimental.  The article also touched on the grief my mother and father never acknowledged – the birth and death of their first baby.  You can read that article here.

The article ended with the words:

I am going to take my dad on a road trip one day to that little country town – after I have found someone who can beautify Ann’s grave.  We can go and acknowledge that perfect baby  who never lived,  and my mother’s loss. 

Well it took a few years.  Dad was not keen – not that he didn’t want to visit the grave; rather he was worried about a lengthy car trip at his age.

At New Year 2015, we were in North Queensland having celebrated Christmas with family there.  We were driving south to another holiday destination (my husband loves a road trip!), and he suggested taking the inland route instead of the coastal highway and suggested we stay overnight in Springsure to find the grave.

It was very emotional finding that tiny grave. It was well looked after and most of the children’s graves in that little country town cemetery had fences around them – almost like a small play pen.  The cemetery itself is very peaceful, and with a description from the helpful shire council the small grave was found.  The inscription was small, and, as mentioned in the article above simply had the words “Infant daughter of the Rev A.G. Fellows.  Died at birth 25 July 1954”, confirming that my mother was not acknowledged. Knowing that she never visited the grave means that she probably never knew.  I can’t begin to imagine.

The photos I sent encouraged Dad, along with stories of some of the people we visited, including their best friends from that time.  He was still unsure of a long car trip. My husband mentioned the possibility of flying to Emerald, and hiring a car.  It was on like Donkey Kong!

The years faded away in the car on the road from Emerald to Springsure – each side road was recalled as a road to a property within the bounds of his parish; bridges over creeks were named; memories of floods and in one instance getting over a flooded creek with a coffin were recalled.  Stories of country weddings The large rock known as ‘Virgin Rock’ came into view on the outskirts of Springsure.

We checked in to the hotel and as I was carrying our bags in my phone rang – it was sister but I said I would call her back. Once a cup of tea had been made I returned that call.  I wish I had taken it earlier.  It was a call to announce the birth of her first grandchild, a little girl. Dad’s first great-grandchild.

We set off for the cemetery almost straight away. It didn’t take long to find Ann’s tiny grave.  I had alerted the parish priest that we would be visiting and someone had painted the little iron fence, and left flowers at the grave.  We stood there, silent momentarily, and  then 60 years of hidden grief for my father suddenly appeared and he cried, leaning in to my shoulder. He sobbed as if it had happened the day before.  But he then stood up straight,put his shoulders back and asked me to pray with him  He prayed for Ann and for my mother; that they were now united.  And he then also gave thanks to God for the safe arrival of his great-granddaughter that very day.  The circle of life. Full circle.  Grieving the loss of a child while celebrating the birth of another. My niece’s arrival into the world could not have come at a better time.

It was a wonderful few days – the local community in Springsure and Rolleston nearby came out in force for morning teas, and Dad was able to catch up with many old friends, including the couple who were his first wedding in the town.

I still cannot imagine my parents’ grief all those years ago; nor the years of grief that followed.  But I am so glad my father can now speak of it; and that he was able to see his daughter’s grave again.

Springsure

rolleston

Atticus Finch and Me

You never really understand a person until you consider things from his point of view…until you climb into his skin and walk around in it:

Atticus Finch, To Kill a Mockingbird

Who doesn’t love To Kill a Mockingbird?  Both the novel and the movie.  I can remember the first time I read it, and it is still a favourite movie. The first time I re-read the book it was even better, as I could picture the characters – Gregory Peck was the perfect Atticus Finch.

My father was and is not a lawyer, but he is very much like Atticus Finch.  He has strong values to which he is faithful, has been and continues to be a good father, was and still is a leader in his community.  He is someone to whom others looked up, and always looked for, and saw, the best in others.  He and my mother lived a life of service to others, and the worst punishment as a child was to be told by my father that he was disappointed.

He is still, at 94, a man to admire.  I wrote a post recently titled Just Keep Swimmingmy code for the need to keep going when times are tough.  Little did I know how important the words were.

I had a bad day last Sunday.  I wasn’t well, was tired, and something happened that made me upset, for no rational reason.  Dad needed something at the shops, and I had been to the shops that morning, taken him to church, was taking him somewhere else that afternoon, and I was generally a bit ‘over it’ that day.  I cried.  Ugly cried. I railed against the injustice of it all; the exhaustion. I guess I needed a cry – salty tears are a good cure for some ills – as I felt better not long after.  A phone call with my sister of course helped.  Figuratively speaking I gave myself an uppercut and decided to get on with it.

I realised that regardless of how difficult the situation was for me ( and let’s face it, it was only a momentary feeling, and one that I had had before, and knew it would pass), it must be so much harder for Dad – losing his independence, coping with so much change in a short space of time, facing the fact of the frailties of old age, and dealing with a bossy daughter who seemed hell-bent on changing his routines.

That realisation made me think of Atticus Finch and his advice to his children – to look at things from another’s point of view to understand what they are going through.  This had a calming influence on me  – perhaps it was not just the wise words, but the fact that I imagined Gregory Peck speaking them.

Change is difficult – coupled with old age it must be frightening.  And if Dad can do his best in those circumstances, then so can I.

I do hope Scout and Jem took care of Atticus in his old age.  I like to think they did.

atticus-finch