7 - My Story - the Fire in my belly
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I am keyboard warrior dressed in my pjs, slippers and dressing gown, firing off my ballistic missiles of truth to change the world so all full time unpaid carers are respected, supported and protected.
My mission is to protect all carers as we have a global dementia humanitarian crisis
I don’t have all the answers. But we have to start somewhere.
We cannot wait for the elusive dementia cure and treatments to be discovered, because so many carers lives are being destroyed now.
Why is it most caring is done by women, like child rearing and housework which is always taken for granted. Yet without all our hardwork the world could not function. Women are consistently paid less than men, this news article 19 November 2019.
https://www.news.com.au/finance/money/wealth/gender-pay-gap-still-disappointing-in-australia-statistics-show/news-story/77988272a8222d0253dc2e1c2122d3fa
Carers around the globe are taken for granted, forgotten and ignored. I’m determined to change this and one day I will speak at the United Nations in New York.
I have been working on these carer strategies every day for the last 2 years to protect everyone’s futures.
Just like climate change, dementia is affecting everyone.
With our aging population won’t your parents as they age, require home care?
Won’t you need it too when you age, with over 100 forms of dementia, a cure/ treatment is a long way away.
Why, because 1 in 3 will be diagnosed. 1 in 10 become carers, destroy carers health and financial security and the governments are forcing carers all onto welfare for the next 30 years in their old age with ill health, after all our sacrifices.
Your children and grandchildren, much smaller generations will have to pay much higher taxes to support all carers on welfare in their old age, as the long term solutions were never considered.
Only those who are very rich can afford it and only those who have nothing, are in aged care facilities as the government provides their care.
For everyone else the costs to put their loved one into an aged care facility, is just way too expensive. Did you know 70% are cared for at home by loved ones.
For everyone else in between, we are destroying our health and financial security and saving just the Australian government $77 billion pa for all our selfless care, and paying for everything with zero tax concessions and I’m determined to change this for everyone.
My choices were,
Sell everything to put mum into an aged care facility which would mean anything from $600,000 to $1,000,000 cash plus $1500 to $2,500 per week for her care
Or take care of mum at home, give up my life, career and had absolutely no idea it would destroy my financial security and affect my health.
We need consistent, just, fair tax and legal rules for everyone.
Just like abortion in Ireland, gay marriage, a black American President, ‘they all said this would never happen’ and it has. The world must change we must have fair, just, consistent tax and legal rules, for every one and we must protect all carers.
The public sector must have the same work practices as the private sector, so tax payers money is no longer wasted. Then the public sector can attract the best people who will care about their work, are accountable for their service. So we are provided with the best services and care and they ensure we have fair, just consistent rules for everyone. It is so frustrating dealing with the public sector, where so many fob us off and do nothing.
Of course there are a number who are very proactive, provide enormous assistance and support.
How can I have any credibility without telling the facts?
Where did I get the fire in my belly to fight for all carers around the world because I have been thru hell by our unjust government legislation and policies in Australia.
The first part is my story and how I found the Herculean courage to be so brave.
So many said to me, when mum got her wings, “you don’t need to fight anymore for carers.” I said “no, things must change and I’m determined to protect all carers.”
The second part is the strategies that all our governments should implement because I have lived it and want to protect all of you.
Including employment, taxation, respite care, care expenses, superannuation, national carers card, higher carers allowance, carers app, support services for children who are carers, legal support
I am not Robinson Crusoe, just have Herculean courage to tell my story, to help change the world for all carers.
Have volunteered with Starlight since 2004.
In 2005 I won Volunteer of the year Award at MLC and won a return trip to New York for all my fundraising and volunteering I have done over the years.
Would you not fight with all your might to hang onto your only asset, my parents bought in 1965. Would you sell your property because of unjust taxes and government decisions, not extravagant living. Of course not, but that’s different because ‘they’ are not in my shoes.
So many suggest to me just sell one unit, whilst they live in a house and have no idea of the many challenges you have being part of a strata, I’m only swapping one problem for an even bigger problem.
I went through absolute misery when I owned another unit in a block of units in Rose Bay.I had 2 court cases from 1998 until 2007 over a water table issue as the Council made the mistake of not requiring hydro-logical and geo-technical reports.
In September 2006 I was forced out of my home, by the tenant from hell who would not let me sleep for 6 months as she was deliberately and constantly slamming doors all through the night. The owner would do nothing. I went to the Law Society for help and discovered to my horror, that tenants have more rights than owners, I could not sue the owner who would do nothing re his nightmare tenant and there was nothing I could do. I was devastated after all the work I had done looking after the strata for 13 years, as Chairman of the committee. I had to move out of my beautiful home and rent a tiny house so I could sleep in peace. I took the tenant to the tenancy tribunal and lost. I wrote to the SMH and had the opportunity to tell my story to Channel 7 nationally and was interviewed by Helen Wellings. Being able to sleep in peace is a fundamental right, just like freedom of speech.
At least by owning all the units I can control the noise by the residents, can make all the decisions, even though it is very hard work and ensure everyone can live and sleep in peace.
I will NEVER go through this again. I just want a peaceful life.
I had a severe nervous breakdown 2010, (spent my bday in hospital ) with my then partners custody court case and my job I loved was made redundant and work rang me 30 minutes before I went into the witness box about a job and this broke my mind. My Drs said no one could endure that amount of pressure. I was so ashamed and embarrassed at the time. Did you know both Abraham Lincoln and Walt Disney suffered from a nervous breakdown ?
They did not think I would recover, I worked very hard every single day for 3 and half years to get well. I lost all my confidence, so asked if I could volunteer in Starlight’s head office 3 days a week doing general admin work and did this for 8 months until I returned to full time employment May 2012. I still was not well and did not feel 100 % until July 2013.
Mum was diagnosed with dementia January 2013, we did not have any debts.
April 2013 had mandatory council fire orders with 8 pages of required renovations.
Do you honestly think I wanted to renovate, after being so unwell, my mother had just been diagnosed with dementia and working full time? Had to take out a huge mortgage to pay for the renovations.
As the building was originally a house and is 100 years old, once you start renovations, you open up a Pandora’s box of unexpected gigantic expenses. I ended up doing the block without the cameras. Very stressful making endless decisions and choosing everything, I was the architect.
I have cleaned every inch of this building, every tile, cupboard, washed every blind, back and front, ironed all the curtains, washed the floors, cleaned all the carpets. As with all renovations there is dust and grime in every nook and cranny.
2013, was a Starlight Ambassador when they celebrated 25 years in Australia. Had my life story told in the Starlight play, huge honour and took enormous courage.
How much do I tell of my life? How can you understand, if parts of the story are missing, it’s impossible. Told it all after much soul searching.
https://www.linkedin.com/pulse/all-my-many-challenges-have-made-me-fearless-n-strong-deanna/
It ran for 10 nights at the Monkey Baa theatre, Darling Harbour Quarter, sponsored by Lend Lease. Lisa Chapple was going to play me, but my story was too confronting.
Which is what gave me the courage to tell all my dire financial difficulties to help all carers. I could never understand why I have had so many endless challenges.
I do now, as it made me brave and fearless, prepared me for the Deanna and Goliath Battle to protect all carers and change the world.
With Neil Perry for National Starlight Day on National TV, of course I was dressed in one of my Hawaiian shirts.
Kate Fraser Actress played me in the Starlight Play.
After being forced to resign by a horrible boss due to mum’s dementia the Friday before Christmas in 2014, was absolutely devastated and cried buckets. My salary was $82,000. pa. I had no salary, no income and was in the middle of renovations due to mandatory council fire orders.
JANUARY 2015 first time I thought would lose everything
Luckily could access my super, just met the cut off date with my birthday and sold my shares. I have paid over $120,000 in unjust land tax, when I cannot pay my bills, do all the work, paid for her outings and pull ups $300 per week, ($250 per month for 6 hours carers from St Lukes, $160 per week for Holdsworth seniors community group who took mum out plus $50 per week for her pull ups) - drowning in debt.
Everything is a big secret and I was not aware of the carers allowance until March 2016, when Professor Brodaty mum’s geriatrician advised me. You cannot back date it to, when you give up work. What a difference this would make to so many carers being able to back date it. All I received was $63.50 per week carers allowance and $10 per week incontinence allowance.
Since I gave up paid employment December 2014 my salary was $82,000, to become a full time carer,
I have lost $804,810 I am not Robinson Crusoe
This does not include interest nor lost super contributions
$382,000 for my salary since January 2015
$180,000 super spent on living expenses and bills
$120,000 has been paid in unjust annual land tax
$50,000 shares sold spent on living expenses and bills
$55,000 for mum’s homecare package that I never received
$14,000 in lost rent as my tenant who worked for NBN, had his contract cut short, by another government decision and it took me over 3 months to find another. Why, because the government has allowed way too many units to be built and so many are empty for months at a time. In the interim, the bills still have to paid
$3810 carers allowance from January 2015 to February 2016, as I was not aware I was entitled to my carers allowance
I had 2 full time jobs, looking after all mum’s care needs 7 days a week.
Plus being the property manager, cleaning, gardening, bins, looking after the tenants, maintenance, spending 15 hours a week tracking every penny on a monthly spreadsheet, which I still do. Have had no money in my bank account since 2015.
July 2017 I attended a my Aged Care homecare package information session at Holdsworth our local seniors community group. I was overjoyed I could apply for home assistance to look after Mum and be able to have a weekend off to myself. So booked another ACAT assessment and Mum was assessed as Level 4 Homecare package in August and was approved = $55K pa for care for mum.
But this did not mean she would get one. I had to send 50 pages of forms, bank and credit card statements, title deeds, mortgage payments etc so we could be financially assessed at to how much it would cost us to pay for the homecare package each week.
I posted it all my financial paperwork and mum’s homecare package Lvl 3 was approved in November 2017 . I was thrilled, I met with Holdsworth several times to discuss mums homecare package and the services we needed. I was desperate to have a weekend off, I wanted cameras installed so I could check on her from my phone as it’s impossible to be with her 24/7. I wanted her outings paid for and her nappies.
I started on this journey of being a loud voice for all carers, when I was facing a $1 million dollar fine from Council for not being compliant with mandatory Council Fire Orders in October 2017.
OCTOBER 2017 second time thought going to lose everything.
The stress was too much, I had severe chest pains going down my left arm. I let Council know I was not well with way too much stress and I would be in touch, as I had one unit vacant and was unable to do the last of the ceilings. I put Mum into urgent respite care. I did not care the aged care facility had not processed all the paperwork. Mum was going in, regardless as I was at breaking point.
I went to see my GP got a referral to a Professor who saw me in a couple of days. They did not tell me at the time, they were very worried. I had every possible test to check my heart, CT scan with ink, blood test, angiogram, numerous ultrasounds to check all my valves. Thank fully my heart is in very good health. I have no money in my bank account, told him my story and asked could he just bulk bill me, which he very kindly agreed to.
I had a rest and regrouped and got in touch with Council who were very kind and compassionate and understood my dire predicament. I had to provide a builders report and electrician report on all the fire orders completed, there is 8 detailed pages of work that had to be undertaken throughout the building. With only the outstanding ceilings remaining. They would wait until I could afford to install the ceilings.
Not fair I could not access a homecare package, because my paperwork was lost 4 times by Centrelink and there is a waiting list of 176,000 for a homecare package.
When you are entitled to $55,000 pa in care services, which would allow you, to have occasionally have a weekend off.
Not fair to pay for everything, do all the work, destroy your health and financial security, never have a weekend off, cannot afford a holiday and pay unjust land tax where you are taxed twice.
Below this article was published on Saturday 11 November 2017 I was interviewed on what it means to be a full time carer. I prepared 12 pages, and the article was only 700 words.
https://www.seniorsnews.com.au/news/baby-boomer-shares-ideas-for-making-carer-job-bett/3261456/
I started an online petition for a national carers card, have just over 1000 signatures
https://www.change.org/p/christian-porter-mp-aph-gov-au-every-full-time-carer-who-does-not-receive-a-pension-should-have-a-national-carers-card
So this interview and article preparation started me on my mission to speak out for all carers and I decided to send this letter to the Prime Minister and many others November 2018.
https://www.linkedin.com/pulse/carers-need-your-help-deanna-mastellone/
From this letter I was invited by Dementia Australia to become a Dementia Advocate. They have given me numerous opportunities to attend various events where my voice can be heard, which has been invaluable and amazing.
January 2018, My Aged care contact me and advise the homecare package has been cancelled. I was absolutely livid after waiting 6 months and then to be advised it was cancelled. I could not understand why and I had to ring numerous times to ascertain what had happened. They lost my financial paperwork. They do not advise you until it is cancelled.
So late January 2018, I completed all the paperwork again and handed it in personally at Centrelink. I follow up this time and after a month, it has been lost yet again and is not on the system.
February 2018 , I ask for the fax number and fax it all again. It was lost again. I am constantly ringing to follow up to see if my paperwork is loaded up on the system.
I met with my local Member of Parliament Gabrielle Upton February 2018
1st April 2018, thought mum had had a stroke, mum struggled to walk, took her to hospital, 2nd April 2018 bought a wheelchair from Aldi and brought mum home. For the next 8 weeks, I kept finding mum on the floor, absolutely heartbreaking. I had to ask a neighbour to help me get her up, as she was slowly turning into jelly and I could not pick her up on my own.
I met with the Prime Ministers office 18 April 2018 to discuss my carers strategies, all thanks to our local Member of Parliament Gabrielle Upton.
https://www.linkedin.com/pulse/strategies-discussed-prime-ministers-office-18-april-2018-mastellone/
April 2018, it is still not in the system, so I fax it again and this time I write on every page of 50 pages, mums name and her My Aged Care number and after many phone calls the financials are finally in the system ready to be assessed.
May 2018 am finally assessed at $10 per day for a Lvl 4 homecare package and now am back on the waiting list for another 6 months.
Did you know Land tax is only assessed on the land value.
It is not assessed on your overall income nor your ability to pay for it.
People do not understand there are huge bills and expenses with property and once they are paid, there is very little income to live on. Owning property is very hard work, I am not a lady of leisure.
Retirees have made many sacrifices to create an income from property rentals. They are mums and dads, trades people, teachers, my dad was a court interpreter who worked 7 days a week to provide for their retirement.
They did not go to the pub, gamble and spend all their income, like so many do. Is it fair if they have worked hard all their lives to provide for their retirement and then be taxed on the income and then taxed again annually on the land value.
Did you know if you had a million dollars in the bank, your annual interest is less than an annual pension?
When I had reached breaking point, drowning in debt, thanks to unjust NSW land tax. I had nowhere to turn to for help. FINE I will help myself.
I had $72,000 of debt, my credit cards, personal loan, including $10,000 outstanding council rates and $12,000 outstanding land tax and $750,000 interest only mortgage due to mandatory council fire orders or face a $1 million dollar fine. I could not afford to pay for help as I knew I would have to pay for mum’s funeral. All this debt was not from extravagant living but from unjust annual land tax, I live very frugally. I decided to pay my outstanding Council Rates and sent land tax, receipts of payments !
I wrote to NSW Revenue requesting a meeting to discuss my dire financial circumstances of being a full time carer, without a homecare package and advised will no longer be paying land tax.
I had prepared a folder of all my financials, bank records, statements, monthly spreadsheets where I track every penny, income, bills, 8 pages of mandatory council fire orders, living expenses etc so they could see my dire circumstances.
14 May 2018, Gabrielle Upton my local MP waved her magic wand and a NSW Tax Commissioner was waiting for me for my meeting with NSW Revenue
He was gobsmacked when I explained how dementia, like climate change is affecting everyone and will affect his children and grandchildren having to support all carers in their old age for the next 30 years. He completely agreed with me, things must change. I asked please do not send the debt collectors after me, have had enough, looking after my mother 7 days a week and am beyond exhausted.
https://www.linkedin.com/pulse/my-meeting-nsw-revenue-tax-commissioner-re-unjust-14-deanna/
**_Because Centrelink had lost my financial paperwork 4 times for a Homecare Package and cancelled it. _**It took me 6 months to get my financial paperwork in the system for it to be assessed.
I was advised when it was finally assessed in May 2018 I only had to pay $10 per day for her level 4 homecare package. Only then did mum return to the back of the waiting list for at least another 6 months.What this means is, with a level 4 homecare package she would have access to $55,000 pa to spend on services and care to look after her at home and it would cost $3,650 pa.
However self funded retirees do not have respite care included in their homecare packages and you must pay for this and it is not tax deductible. After working 7 days a week for $1 an hour all you are entitled to is $63.50 per week carers allowance. And then you have to pay someone to do your job so you can have a rest. Is this right ? Is this fair? Of course not !!!
1st June 2018, Mum had stopped walking and I could not access any assistance. I hired a hospital bed to help me sit her up to feed her.
I knew mum was dying, once she stopped walking. I have never known such anguish, despair and had absolutely nowhere to turn to, for help.
Mum went down very fast once she stopped walking, absolute blessing, she was gone in 13 weeks.
2nd July Malcolm Turnbull announced $38 million for dementia research, one of my carer strategies, (not the amount of money) - thrilled !
After my meeting on the 14th May 2018 with a NSW Tax Commissioner.
2nd July 2018 I still had the NSW Chief Tax Commissioner threaten to default my mortgage, (which means I would lose everything) unless I continued to pay unjust land tax of $12,000 till December 2018.
I was absolutely gutted and cried buckets.
JULY 2018 MUM WAS DYING, PETRIFIED FOR A THIRD TIME GOING TO LOSE EVERYTHING
Rang my local MP Gabrielle Upton in tears and was advised to put it in writing and she would assist me.
When I posted this up on social media, I copped so much criticism and lost friends, who know jack shit and have mouths the size of watermelons. Why are so many, so quick to judge and criticize, when they have no knowledge of the hell and misery I was going through. How many other carers are in such dire circumstances but they tell no one, as there is huge shame and embarrassment when you are facing gigantic financial difficulties.
They completely underestimated me, they thought this would scare me away, been through way too much in my life, am scared of nothing !
I was so hurt, upset and then I was absolutely LIVID !!!
https://www.linkedin.com/pulse/all-my-many-challenges-have-made-me-fearless-n-strong-deanna/
In desperation I rang St Vincent’s hospice, hoping I could book her in, they said, no, not possible to admit someone with dementia, there is absolutely nowhere to turn to for help. Why is it elsewhere in the world you can ? this must change too !
They advised me to contact my GP to organise with Uniting for the Geriatric Flying Squad.
My GP got in touch with Uniting at War Memorial who sent out the next day the Geriatric Flying Squad team who assessed mum. They immediately organised an air mattress to help with mum’s bed sores and hoist at no cost. The nurse came over every couple of days to dress her bed sores.
How many other carers are in this situation ???? The geriatric flying squad told me there are many, many in my shoes who are drowning in debt, cannot access any help, refuse to sell.
There are 176,000 on the waiting list for Homecare packages.
I contacted the media for assistance, no one would help me. I wrote to the Premier and requested a meeting, was fobbed off.
9 July 2018 I wrote to 80 NSW MPs and rang 25 of their offices.
16 July mum’s funding for her level 4 homecare package came through.
However that night I broke my right wrist. When you are beyond exhausted from working 7 days a week and have gigantic financial worries that cause you many sleepless nights. We all do stupid things, I was watering the garden at night, as this was the only time I could do it, I tripped and fell heavily backwards on the concrete and broke my right wrist.
Even with a broken right wrist this did not stop me from writing to many politicians, thanking them for their assistance with mum’s homecare package, I wrote with my left hand.
Mum had to go into urgent respite care and of course this is not included in a self funded retiree homecare package, I paid for it on my credit cards. 6 weeks later she got her wings and I had to go into even more debt to pay for her funeral.
I firmly believe out of everything bad, always good comes!
I had no other option but to fight for justice for every carer!
This huge injustice created the fire in my belly, my determination and mission to change the world for all carers and stop others suffering and ensure they do not endure the hell I have.
Just like my beloved Mum who fought for 8 years to save Rose Bay from a giant marina and won the battle, she never once gave up. So the bay is protected for everyone to enjoy the views to Manly and it is not filled with plastic trophy boats that go nowhere.
My story submitted to the Royal Commission for Aged Care September 2018, mum’s diagnosis, no debt 2013, impossible to access any help, unjust taxation to drowning in debt after sacrificing everything and doing all the work
https://www.linkedin.com/pulse/royal-commission-aged-care-taxation-impossible-mastellone-m-com/
I have had nothing in my bank account since 2015, as it all goes on bills and my bills exceed my income all thanks to unjust land tax, where we are taxed twice.
I’m still drowning in huge debt from unjust land tax, not from extravagant living, still paying off, my $8,700 in respite care so I could have a rest, my mothers funeral costs, who passed over 12 months ago and have yet to intern her ashes and organise her headstone with unjust land tax. Have yet to sort out Mum’s things. Way too many battles and not enough hours in the day.
My car, have had it since new is 20 years old next April, still goes like a rocket and I call it the Millennium Falcon. My wonderful mechanic assures me, he will keep it going for a few more years.
If I chose to return to work, my tax rate would be 49 cents in the dollar plus PAYE tax, on a salary of $82,000, so all I would be doing is working to pay tax.
I cannot afford to pay my accountant to put in my tax returns for the last 4 years, the ATO owes me money, as my bills exceed my income.
Interest only mortgage has increased $600 per month since 2016, yet the Reserve Bank interest rate has dropped dramatically. All bills have increased, yet cannot increase rents, salaries not increased, property prices dropped 20% and rents have dropped 10%.
NSW Land tax has not followed property prices and rentals
If I sell, will have capital gains tax except for my 1 bedroom unit that I live in, plus pay off my huge mortgage and will end up on a pension.
Even though my parents bought this property in 1965 and is now in my name, there is a capital gains tax bill if and when the property is sold. My beloved Dad worked 7 days a week all his life, paid his taxes to provide for our futures and retirement. He would be heartbroken to see me in such dire circumstances.
I could never understand why both my parents were always buried in papers, they both always fought for justice. They both had brilliant intellectual minds
Now I’m following in their footsteps as I’m buried in papers with so many battles.
I did not sacrifice everything, work hard for nothing, 7 days a week, to lose everything.
How many other carers are in the exactly the same position or worse than me, have lost everything ?
After doing all the work, sacrificing their lives, their health and financial security.
We are saving Australia alone $60 billion pa for all our selfless care and our health and financial security is being destroyed by unjust government legislation and policies.
Is this Right ?
Otherwise all children and grandchildren will be left with the burden of much higher taxes to support all carers for the next 30 years as the long term solutions were never considered.
Your parents will need care and then one day you will need care.
We must change this for everyone !!!