Your’e on your own… the services that never were

I’ve been avoiding writing this one!  So much frustration, bureaucracy and anger.  I’m so tired of fighting it all.  It’s like one of my sergeants once said to me, ‘it’s like pushing shit uphill!’ (excuse the french).

At the moment I’m basically a full-time carer with 4 hours a week respite for me to go do stuff.  Ma is usually ok on her own for around 1 1/2 hours.  I’m on leave from work and am hoping to work two days a week from home with some time spent at work… I’m also trying to clear the house of over 50 years of ‘stuff’ in case we have to sell to fund Ma’s nursing home care.  I’m on the usual roller coaster of emotion.

Back in June, Ma was approved for a Level 3 or 4 (High level care) Home Care Package.  Our wonderful Government introduced this back in 2013 to help the aged to remain at home for as long as possible… only problem with this wonderful solution is that in our area of Blue Mountains, Hawkesbury and Nepean, there haven’t been any vacancies since June this year and probably won’t be any for some time to come!

Back in July when I was being driven to distraction with Ma’s physiological problems, I tried to once again access care. It was only after I logged onto the Federal Government’s My Aged Care website I was able to obtain some help.  They couldn’t believe that our HUGE area had no services available so rang every provider in our area on my behalf and told me in disbelief that there was nothing in our area for at least 6 months.

I can only praise them for their perseverance in wanting to assist.  They were able to send a referral to the Benevolent Society (one of the providers) for what is called ‘Community and In Home Flexible Respite’ which is funded through the Federal Government for carers to access care.  This is under the carer’s name and not the person in need of care.  They were able to provide me with 4 hours a week respite.

Ma’s ‘challenging’ behaviour of recent weeks led to her being admitted to Nepean Hospital’s Medical Assessment Unit where she underwent many test in order to determine a diagnosis.  After being poked and prodded for 10 days there is still no diagnosis and no extra help.

The social worker at the hospital tried to access a variety of services and failed… she also failed to ring back. She told me it was easier to transfer Ma straight into a nursing home, which I refused to do.

The Geriatrician told me that Ma could access more services with a proper diagnosis… but couldn’t give me a diagnosis.  In fact, nobody can give me a diagnosis!!

I tried to ring the Waitlist Officer for the Home Care Packages 5 times.  Nobody rang me back.  When I finally made contact, I was told that because I had accessed 4 hours a week respite our file had been marked ‘closed’.  This is where I got a wee bit ANGRY.  The In Home Flexible Respite program is under my name, therefore Ma’s Home Package shouldn’t have been removed from the list.  I was then told that there had been NO VACANCIES since JUNE and that being on or off the list wouldn’t have made any difference.  We are now back on the list.

In the meantime the Benevolent Society have rung to check on Ma, knowing she is now out of hospital and also checked up on me.  They have now offered me 4 hours extra a week for 5 weeks so I can go to work for a few hours. I cannot speak highly enough of them.

I have given the first lot of paperwork to Ma’s preferred nursing home.  I now have to fill out a 31 page questionnaire on Ma’s financial situation.  So that we can obtain a letter which in turn determines how much money she will pay whilst in care. So, we may have to sell the house.  If I was a full-time pensioner caring for her, the house would be exempt.

Again, I go back to the people that have nobody looking after them.  Our current system is NOT WORKING.  These people are the ones that end up either dead or in a nursing home sooner rather than later because of lack of funds available.  I have talked to:

  • a community nurse
  • a paramedic
  • care providers
  • doctors
  • a social worker.

They all agree that the system is failing our aging population.  Our politicians are letting us down.  Maybe it’s because the aging population’s votes soon won’t matter.

I urge everyone to get the word out there.  Please spread the word so that others can access care.  We are coping but as I was told by the Waitlist Officer, she hears the same story all the time.  She can’t help, but wishes she could, there just isn’t any funding.

Dementia is the second largest killer in Australia.  This is Dementia Month, make it mean something… please.

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